qualitative longitudinal case study

Have a language expert improve your writing

Run a free plagiarism check in 10 minutes, generate accurate citations for free.

Knowledge Base

Methodology

Longitudinal Study | Definition, Approaches & Examples

Longitudinal Study | Definition, Approaches & Examples

Published on May 8, 2020 by Lauren Thomas . Revised on June 22, 2023.

In a longitudinal study, researchers repeatedly examine the same individuals to detect any changes that might occur over a period of time.

Longitudinal studies are a type of correlational research in which researchers observe and collect data on a number of variables without trying to influence those variables.

While they are most commonly used in medicine, economics, and epidemiology, longitudinal studies can also be found in the other social or medical sciences.

How long is a longitudinal study, longitudinal vs cross-sectional studies, how to perform a longitudinal study, advantages and disadvantages of longitudinal studies, other interesting articles, frequently asked questions about longitudinal studies.

No set amount of time is required for a longitudinal study, so long as the participants are repeatedly observed. They can range from as short as a few weeks to as long as several decades. However, they usually last at least a year, oftentimes several.

One of the longest longitudinal studies, the Harvard Study of Adult Development , has been collecting data on the physical and mental health of a group of Boston men for over 80 years!

Here's why students love Scribbr's proofreading services

Discover proofreading & editing

The opposite of a longitudinal study is a cross-sectional study. While longitudinal studies repeatedly observe the same participants over a period of time, cross-sectional studies examine different samples (or a “cross-section”) of the population at one point in time. They can be used to provide a snapshot of a group or society at a specific moment.

Both types of study can prove useful in research. Because cross-sectional studies are shorter and therefore cheaper to carry out, they can be used to discover correlations that can then be investigated in a longitudinal study.

If you want to implement a longitudinal study, you have two choices: collecting your own data or using data already gathered by somebody else.

Using data from other sources

Many governments or research centers carry out longitudinal studies and make the data freely available to the general public. For example, anyone can access data from the 1970 British Cohort Study, which has followed the lives of 17,000 Brits since their births in a single week in 1970, through the UK Data Service website .

These statistics are generally very trustworthy and allow you to investigate changes over a long period of time. However, they are more restrictive than data you collect yourself. To preserve the anonymity of the participants, the data collected is often aggregated so that it can only be analyzed on a regional level. You will also be restricted to whichever variables the original researchers decided to investigate.

If you choose to go this route, you should carefully examine the source of the dataset as well as what data is available to you.

Collecting your own data

If you choose to collect your own data, the way you go about it will be determined by the type of longitudinal study you choose to perform. You can choose to conduct a retrospective or a prospective study.

In a retrospective study , you collect data on events that have already happened.
In a prospective study , you choose a group of subjects and follow them over time, collecting data in real time.

Retrospective studies are generally less expensive and take less time than prospective studies, but are more prone to measurement error.

Like any other research design , longitudinal studies have their tradeoffs: they provide a unique set of benefits, but also come with some downsides.

Longitudinal studies allow researchers to follow their subjects in real time. This means you can better establish the real sequence of events, allowing you insight into cause-and-effect relationships.

Longitudinal studies also allow repeated observations of the same individual over time. This means any changes in the outcome variable cannot be attributed to differences between individuals.

Prospective longitudinal studies eliminate the risk of recall bias , or the inability to correctly recall past events.

Disadvantages

Longitudinal studies are time-consuming and often more expensive than other types of studies, so they require significant commitment and resources to be effective.

Since longitudinal studies repeatedly observe subjects over a period of time, any potential insights from the study can take a while to be discovered.

Attrition, which occurs when participants drop out of a study, is common in longitudinal studies and may result in invalid conclusions.

Prevent plagiarism. Run a free check.

If you want to know more about statistics , methodology , or research bias , make sure to check out some of our other articles with explanations and examples.

Normal distribution
Degrees of freedom
Null hypothesis
Discourse analysis
Control groups
Mixed methods research
Non-probability sampling
Quantitative research
Ecological validity

Research bias

Rosenthal effect
Implicit bias
Cognitive bias
Selection bias
Negativity bias
Status quo bias

Longitudinal studies and cross-sectional studies are two different types of research design . In a cross-sectional study you collect data from a population at a specific point in time; in a longitudinal study you repeatedly collect data from the same sample over an extended period of time.

Longitudinal study	Cross-sectional study
observations	Observations at a in time
Observes the multiple times	Observes (a “cross-section”) in the population
Follows in participants over time	Provides of society at a given point

Longitudinal studies can last anywhere from weeks to decades, although they tend to be at least a year long.

Longitudinal studies are better to establish the correct sequence of events, identify changes over time, and provide insight into cause-and-effect relationships, but they also tend to be more expensive and time-consuming than other types of studies.

The 1970 British Cohort Study , which has collected data on the lives of 17,000 Brits since their births in 1970, is one well-known example of a longitudinal study .

Cite this Scribbr article

If you want to cite this source, you can copy and paste the citation or click the “Cite this Scribbr article” button to automatically add the citation to our free Citation Generator.

Thomas, L. (2023, June 22). Longitudinal Study | Definition, Approaches & Examples. Scribbr. Retrieved August 26, 2024, from https://www.scribbr.com/methodology/longitudinal-study/

Is this article helpful?

Lauren Thomas

Other students also liked, cross-sectional study | definition, uses & examples, correlational research | when & how to use, guide to experimental design | overview, steps, & examples, "i thought ai proofreading was useless but..".

I've been using Scribbr for years now and I know it's a service that won't disappoint. It does a good job spotting mistakes”

Longitudinal Qualitative Research

Cite this chapter.

Joseph C. Hermanowicz 5

Part of the book series: Handbooks of Sociology and Social Research ((HSSR))

5708 Accesses

15 Citations

An emerging body of work has begun to reveal the empirical and theoretical successes of longitudinal qualitative research. The techniques open a window through which to see how others experience and make meaning of lives over time. Longitudinal qualitative research is amenable to studying a broad spectrum of settings and situations that characterize contemporary social life. Careful design enables such techniques to capture the conditions and processes of inter-cohort and intra-cohort variation. What is more, the methods are vital to identifying and characterizing trajectories, turning points, and interpretive stances that cover both short and long periods of time. Longitudinal qualitative methods thus push a frontier of knowledge about socially-rooted differences in development and aging. While robust in its descriptive and explanatory power, longitudinal qualitative research remains underdeveloped as a methodological tradition, and is therefore in need of codification. Using examples from the author’s own work on careers as well as other studies ranging across families, illness, education, and crime, the present work discusses the parameters that guide the use of qualitative methods in longitudinal research. Three sets of issues are discussed: issues of design (including the origination of research, number and frequency of study episodes, and protocol format); issues of execution (including subject attrition and retention, respondent reaction, and research ethics); and issues of analysis (including iterative and summative modes of data interrogation).

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Subscribe and save.

Get 10 units per month
Download Article/Chapter or eBook
1 Unit = 1 Article or 1 Chapter
Cancel anytime
Available as PDF
Read on any device
Instant download
Own it forever
Available as EPUB and PDF
Compact, lightweight edition
Dispatched in 3 to 5 business days
Free shipping worldwide - see info
Durable hardcover edition

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

How to analyse longitudinal data from multiple sources in qualitative health research: the pen portrait analytic technique

Qualitative Longitudinal Research

Synthesis: Combining Methods for the Analysis of Vulnerability Processes Across the Life Course

Armstrong, E. A., & Hamilton, L. T. (2013). Paying for the party: How college maintains inequality . Cambridge, MA: Harvard University Press.

Book Google Scholar

Baltes, P. B., & Nesselroade, J. R. (1984). Paradigm lost and paradigm regained: Critique of Dannefer’s portrayal of life-span developmental psychology. American Sociological Review, 49 , 841–847.

Article Google Scholar

Bellah, R. N., Madsen, R., Sullivan, W. M., Swidler, A., & Tipton, S. M. (1985). Habits of the heart: Individualism and commitment in American life . New York: Harper and Row.

Google Scholar

Ben-David, J. (1972). The profession of science and its powers. Minerva, 10 , 351–383.

Charmaz, K. (1990). ‘Discovering’ chronic illness: Using grounded theory. Social Science and Medicine, 30 , 1161–1172.

Charmaz, K. (2001). Qualitative interviewing and grounded theory analysis. In J. F. Gubrium & J. A. Holstein (Eds.), Handbook of interview research: Context and method (pp. 675–694). Thousand Oaks: Sage.

Chapter Google Scholar

Charmaz, K. (2007). Grounded theory. In G. Ritzer (Ed.), Encyclopedia of sociology (pp. 2023–2027). Oxford: Blackwell.

Charmaz, K., & Mitchell, R. G. (2001). Grounded theory in ethnography. In P. Atkinson, A. Coffey, S. Delamont, J. Lofland, & L. Lofland (Eds.), Handbook of ethnography (pp. 160–174). Los Angeles: Sage.

Cohler, B. J., & Hostetler, A. (2003). Linking life course and life story: Social change and the narrative study of lives over time. In J. T. Mortimer & M. J. Shanahan (Eds.), Handbook of the life course (pp. 555–576). New York: Kluwer/Plenum.

Corden, A., & Nice, K. (2007). Qualitative longitudinal analysis for policy: Incapacity benefits recipients taking part in pathways to work. Social Policy and Society, 6 , 557–569.

Dannefer, D. (1984a). Adult development and social theory: A paradigmatic reappraisal. American Sociological Review, 49 , 100–116.

Dannefer, D. (1984b). The role of the social in life-span developmental psychology, past and future: Rejoinder to Baltes and Nesselroade. American Sociological Review, 49 , 847–850.

Dannefer, D. (2013). Age and sociological explanation: Expanding horizons in the study of aging and the life course. Contemporary Sociology, 42 (6), 793–800.

Dannefer, D., & Kelley-Moore, J. A. (2009). Theorizing the life course: New twists in the paths. In V. Bengston, M. Silverstein, & N. Putney (Eds.), Handbook of theories of aging (pp. 389–411). New York: Springer.

Elder, G. H., Jr. (1974). Children of the great depression: Social change in life experience . Chicago: University of Chicago Press.

Elder, G. H., Jr. (1981). History and the life course. In D. Bertaux (Ed.), Biography and society: The life history approach in the social sciences (pp. 77–115). Newbury Park: Sage.

Elder, G. H., Jr. (1998). The life course and human development. In R. M. Lerner (Ed.), Handbook of child psychology: Vol. 1. Theoretical models of human development (pp. 939–991). New York: Wiley.

Ellis, C. (1995). Emotional and ethical quagmires in returning to the field. Journal of Contemporary Ethnography, 24 , 68–98.

Erikson, E. H. (1950). Childhood and society . New York: Norton.

Gallmeier, C. P. (1991). Leaving, revisiting, and staying in touch: Neglected issues in field research. In W. B. Shaffir & R. A. Stebbins (Eds.), Experiencing fieldwork: An inside view of qualitative research . Newbury Park: Sage.

Glaser, B., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research . New York: Aldine de Gruyter.

Gustin, B. H. (1973). Charisma, recognition, and the motivation of scientists. American Journal of Sociology, 78 (5), 1119–1134.

Hermanowicz, J. C. (1998). The stars are not enough: Scientists—Their passions and professions . Chicago: University of Chicago Press.

Hermanowicz, J. C. (2002). The great interview: 25 strategies for studying people in bed. Qualitative Sociology, 25 (4), 479–499.

Hermanowicz, J. C. (2009). Lives in science: How institutions affect academic careers . Chicago: University of Chicago Press.

Hermanowicz, J. C. (2013). The longitudinal qualitative interview. Qualitative Sociology, 36 , 189–208.

Lareau, A. (2011). Unequal childhoods: Class, race, and family life (2nd ed.). Berkeley: University of California Press.

Laub, J. H., & Sampson, R. J. (2003). Shared beginnings, divergent lives: Delinquent boys to age 70 . Cambridge, MA: Harvard University Press.

Lawton, J. (2001). Gaining and maintaining consent: Ethical concerns raised in a study of dying patients. Qualitative Health Research, 11 , 693–705.

Levinson, D. J. (1978). The seasons of a man’s life . New York: Ballantine.

Levinson, D. J. (1996). The seasons of a woman’s life . New York: Alfred A. Knopf.

Menard, S. (Ed.). (2002). Longitudinal research (2nd ed.). Thousand Oaks: Sage.

Moffatt, M. (1989). Coming of age in New Jersey: College and American culture . New Brunswick: Rutgers University Press.

Murray, S. A., Kendall, M., Carduff, E., Worth, A., Harris, F. M., Lloyd, A., Cavers, D., Grant, L., & Sheikh, A. (2009). Use of serial qualitative interviews to understand patients’ evolving experiences. British Medical Journal, 339 , b3702.

Neugarten, B. L. (Ed.). (1968). Middle age and aging: A reader in social psychology . Chicago: University of Chicago Press.

Neugarten, B. L. (1979). Time, age, and the life cycle. American Journal of Psychiatry, 136 , 887–894.

Neugarten, B. L. (1996). In D. A. Neugarten (Ed.), The meanings of age: Selected papers of Bernice L. Neugarten . Chicago: University of Chicago Press.

Neugarten, B. L., & Datan, N. (1973). Sociological perspectives on the life cycle. In P. B. Baltes & K. W. Schaie (Eds.), Life-span development psychology: Personality and socialization (pp. 53–79). New York: Academic.

Neugarten, B. L., Moore, J. W., & Lowe, J. C. (1965). Age norms, age constraints, and adult socialization. American Journal of Sociology, 70 , 710–717.

Reiss, M. J. (2005). Managing endings in a longitudinal study: Respect for persons. Research in Science Education, 35 , 123–135.

Rupp, L. J., & Taylor, V. (2011). Going back and giving back: The ethics of staying in the field. Qualitative Sociology, 34 , 483–496.

Ruspini, E. (2002). Introduction to longitudinal research . London: Routledge.

Ryder, N. B. (1965). The cohort as a concept in the study of social change. American Sociological Review, 30 , 843–861.

Saldana, J. (2003). Longitudinal qualitative research: Analyzing change through time . Walnut Creek: AltaMira.

Scheper-Hughes, N. (2000). Ire in Ireland. Ethnography, 1 , 117–140.

Scott, J., & Alwin, D. (1998). Retrospective versus prospective measurement of life histories in longitudinal research. In J. Z. Giele & G. H. Elder Jr. (Eds.), Methods of life course research: Qualitative and quantitative approaches (pp. 98–127). Thousand Oaks: Sage.

Settersten, R. A., Jr. (2003). Age structuring and the rhythm of the life course. In J. Mortimer & M. Shanahan (Eds.), Handbook of the life course (pp. 81–98). New York: Kluwer Academic/Plenum Publishers.

Settersten, R. A., Jr., & Hagestad, G. O. (1996a). What’s the latest? Cultural age deadlines for family transitions. Gerontologist, 36 (2), 178–188.

Settersten, R. A., & Hagestad, G. O. (1996b). What’s the latest? II. Cultural age deadlines for educational and work transitions. Gerontologist, 36 (5), 602–613.

Shaw, C. R. ([1930] 1966). The Jack-Roller: A delinquent boy’s own story . Chicago: University of Chicago Press.

Sheehy, G. (1976). Passages: Predictable crises of adult life . New York: Bantam.

Strauss, A. L., & Corbin, J. (1994). Grounded theory methodology: An overview. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research (pp. 273–285). Thousand Oaks: Sage.

Suttles, G. D. (1968). The social order of the slum: Ethnicity and territory in the inner city . Chicago: University of Chicago Press.

ten Have, P. (2004). Understanding qualitative research and ethnomethodology . Thousand Oaks: Sage.

Whyte, W. F. (1996). On the evolution of street corner society. In A. Lareau & J. Schultz (Eds.), Journeys through ethnography: Realistic accounts of fieldwork (pp. 9–73). Boulder: Westview.

Download references

Author information

Authors and affiliations.

Department of Sociology, The University of Georgia, Athens, GA, 30602-1611, USA

Joseph C. Hermanowicz

You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Joseph C. Hermanowicz .

Editor information

Editors and affiliations.

Department of Sociology, University of North Carolina, Chapel Hill, North Carolina, USA

Michael J. Shanahan

Life Course Center and Department of Sociology, University of Minnesota, Minneapolis, Minnesota, USA

Jeylan T. Mortimer

Department of Sociology, Washington State University, Pullman, Washington, USA

Monica Kirkpatrick Johnson

Rights and permissions

Reprints and permissions

Copyright information

About this chapter

Hermanowicz, J.C. (2016). Longitudinal Qualitative Research. In: Shanahan, M., Mortimer, J., Kirkpatrick Johnson, M. (eds) Handbook of the Life Course. Handbooks of Sociology and Social Research. Springer, Cham. https://doi.org/10.1007/978-3-319-20880-0_22

Download citation

DOI : https://doi.org/10.1007/978-3-319-20880-0_22

Publisher Name : Springer, Cham

Print ISBN : 978-3-319-20879-4

Online ISBN : 978-3-319-20880-0

eBook Packages : Social Sciences Social Sciences (R0)

Share this chapter

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

Publish with us

Policies and ethics

Find a journal
Track your research

An official website of the United States government

The .gov means it’s official. Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

The site is secure. The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Publications
Account settings
My Bibliography
Collections
Citation manager

Save citation to file

Email citation, add to collections.

Create a new collection
Add to an existing collection

Add to My Bibliography

Your saved search, create a file for external citation management software, your rss feed.

Search in PubMed
Search in NLM Catalog
Add to Search

The STS case study: an analysis method for longitudinal qualitative research for implementation science

Affiliations.

1 VA Office of Rural Health (ORH), Veterans Rural Health Resource Center-Iowa City, Iowa City VA Healthcare System, Iowa City, IA, USA. [email protected].
2 VA Health Services Research & Development Service, Center for Access and Delivery Research and Evaluation, Iowa City VA Health Care System (152), 601 Highway 6 West, Iowa City, IA, 52246, USA. [email protected].
3 VA Office of Rural Health (ORH), Veterans Rural Health Resource Center-Iowa City, Iowa City VA Healthcare System, Iowa City, IA, USA.
4 VA Health Services Research & Development Service, Center for Access and Delivery Research and Evaluation, Iowa City VA Health Care System (152), 601 Highway 6 West, Iowa City, IA, 52246, USA.
5 The Department of Internal Medicine, University of Iowa Carver College of Medicine, Iowa City, IA, USA.
6 Institute for Clinical and Translational Science, University of Iowa, Iowa City, IA, USA.
7 VISN 10/Cincinnati Tele-CC System, Cincinnati, OH, USA.
PMID: 33546599
PMCID: PMC7866713
DOI: 10.1186/s12874-021-01215-y

Background: Ethnographic approaches offer a method and a way of thinking about implementation. This manuscript applies a specific case study method to describe the impact of the longitudinal interplay between implementation stakeholders. Growing out of science and technology studies (STS) and drawing on the latent archaeological sensibilities implied by ethnographic methods, the STS case-study is a tool for implementors to use when a piece of material culture is an essential component of an innovation.

Methods: We conducted an ethnographic process evaluation of the clinical implementation of tele-critical care (Tele-CC) services in the Department of Veterans Affairs. We collected fieldnotes and conducted participant observation at virtual and in-person education and planning events (n = 101 h). At Go-Live and 6-months post-implementation, we conducted site visits to the Tele-CC hub and 3 partnered ICUs. We led semi-structured interviews with ICU staff at Go-Live (43 interviews with 65 participants) and with ICU and Tele-CC staff 6-months post-implementation (44 interviews with 67 participants). We used verification strategies, including methodological coherence, appropriate sampling, collecting and analyzing data concurrently, and thinking theoretically, to ensure the reliability and validity of our data collection and analysis process.

Results: The STS case-study helped us realize that we must think differently about how a Tele-CC clinician could be noticed moving from communal to intimate space. To understand how perceptions of surveillance impacted staff acceptance, we mapped the materials through which surveillance came to matter in the stories staff told about cameras, buttons, chimes, motors, curtains, and doorbells.

Conclusions: STS case-studies contribute to the literature on longitudinal qualitive research (LQR) in implementation science, including pen portraits and periodic reflections. Anchored by the material, the heterogeneity of an STS case-study generates questions and encourages exploring differences. Begun early enough, the STS case-study method, like periodic reflections, can serve to iteratively inform data collection for researchers and implementors. The next step is to determine systematically how material culture can reveal implementation barriers and direct attention to potential solutions that address tacit, deeply rooted challenges to innovations in practice and technology.

Keywords: Critical care; Ethnography; Implementation; Longitudinal qualitative research; Science and technology studies; Telemedicine.

PubMed Disclaimer

Conflict of interest statement

The authors declare that they have no competing interests.

Publication types

Search in MeSH

Related information

Grants and funding.

CIN 13-412/VA HSR&D Center for Access and Delivery Research and Evaluation
14385/VA Office of Rural Health, Veterans Rural Health Resource Center- Iowa City

LinkOut - more resources

Full text sources.

BioMed Central
Europe PubMed Central
PubMed Central

Other Literature Sources

scite Smart Citations
MedlinePlus Health Information

Citation Manager

NCBI Literature Resources

MeSH PMC Bookshelf Disclaimer

The PubMed wordmark and PubMed logo are registered trademarks of the U.S. Department of Health and Human Services (HHS). Unauthorized use of these marks is strictly prohibited.

Value, challenges and practical considerations when designing, conducting and analysing a longitudinal qualitative study in family medicine

Anne-Marie Boylan ,

Aleksandra J Borek .

https://doi.org/ 10.1136/fmch-2021-001283

Qualitative longitudinal design has a long tradition in a variety of social science disciplines and is increasingly used in applied healthcare research, including family medicine. While there are many definitions of longitudinal qualitative research (LQR), its most common characteristics are multiple data collection points and its focus on temporality, which prioritise the study of change and continuity. Thus, LQR can provide insights into the nature, causes and consequences of change (or its absence). In this paper, we discuss the key steps and considerations related to designing and conducting LQR in family medicine and community health. These include (1) deciding on the length of data collection and timing and number of interviews, (2) planning recruitment: attrition versus oversampling, (3) approaching data collection: asking the same or different questions, (4) planning and conducting the analysis and writing up findings, and (5) conducting ethical LQR. We also highlight what LQR can offer family medicine and community health, including (1) allowing exploration of views and experiences of a variety of participants over time; (2) following participants through important transitions; (3) studying implementation of new practices, processes or interventions; (4) exploring the importance of historical change and/or macro context on individuals’ lives; and (5) developing a deeper understanding of phenomena under study. While a lot of attention has been paid to using LQR when studying patients’ and/or carers’ experiences, we highlight its value when studying a variety of actors relevant to family medicine, including healthcare professionals and policy makers.

Introduction: what is longitudinal qualitative research (LQR)?

The value of qualitative research in applied healthcare research, including primary care, is now widely recognised and well described. 1 2 In recent decades, as the qualitative research field has matured, we have also seen exciting innovations, including the use of more complex designs, such as longitudinal qualitative design. While LQR has a long tradition in a variety of social science disciplines, 3 it is also increasingly used in applied healthcare research, 4 including family medicine.

There are many definitions of LQR in the literature, partially depending on the field in which they are used. Some definitions specify the frequency of data collection 5 ; others focus on duration of data collection, 6 while some promote a more flexible approach, noting that each study is different and may also need a different approach. 7 However, what they all highlight is that the key characteristic of LQR is both multiple data collection points and a focus on temporality, allowing the study of not only change but also continuity to become a priority. 8 9 Focusing on change and continuity can provide insights into the nature, causes and consequences of change. 1 Like quantitative research, LQR can also give us indications of increases, decreases, constancy and idiosyncrasy. 10

There are different ways in which one can conduct LQR. First, LQR can be used as either a stand-alone study or alongside other methods. 1 3 Second, longitudinal design may be planned from the outset of the study when researchers plan in advance to conduct a number of interviews over time, or it may be added in after the first data collection point if the topic or the data seem likely to benefit from subsequent data collection. 11 Finally, unlike in a narrative study where one invites participants to describe their life events in a single interview, one can conduct LQR using a prospective longitudinal design, which involves following the same individuals over a period of time or employing a recurrent cross-sectional design, which involves recruiting different participants at different time points. 1

LQR and primary care

LQR has been developed and extensively used in social sciences, including anthropology, education and psychology, but it is also a useful, yet so far underused, approach in primary care and family medicine research. While some of the overarching principles and steps of designing the LQR are similar across disciplines, what they mean for each discipline or setting may differ. LQR’s focus on change and continuity lends itself very well to the healthcare context and primary care for numerous reasons. First, as patients often experience both health and primary care services over time, prospective LQR can enable us to follow these experiences, 12 shed more light on why they may change or not, 4 and help identify patients’ changing needs. 13 Second, LQR may be useful when following both individuals (including primary care patients and healthcare professionals (HCPs) and relevant primary care organisations through important transitions to explore how they adjust, make sense of and deal with these transitions. 3 4 Third, LQR can also be used to study the process of implementing new practices in primary care in the context of both clinical trials and routine clinical care, 5 thus highlighting barriers and facilitators to embedding new processes, practices or interventions at different stages. Finally, the individual experiences of change and continuity in family medicine can occur within the broader, historical context, which can also shape these experiences. LQR can help us to understand these relationships. 1

Steps for designing, conducting and analysing LQR

In this paper, we aimed to (1) introduce LQR to family medicine researchers and clinicians; (2) highlight important steps, considerations, challenges and opportunities related to LQR; and (3) signpost to other literature that may be helpful for those new to LQR. We discuss key steps related to conducting LQR with particular emphasis on applications in family medicine and primary healthcare research. The steps presented are structured around key stages of any qualitative study, including planning and design, recruitment and data collection, and data analysis. We also discuss ethical considerations as cross-cutting these stages. As experienced qualitative researchers in primary care, we draw on wider applied healthcare research when discussing these steps as well as our experience of conducting qualitative research (including longitudinal design) while highlighting papers that have used longitudinal qualitative design in primary care in order to showcase the different approaches and the value of LQR in this particular setting. Table 1 provides more information on selected examples of longitudinal qualitative studies in family medicine and community health research. This is not an exhaustive list; rather, these were chosen by the authors to illustrate the diversity of LQR in primary care, including methodological approaches, aims and samples.

It is important to highlight that the steps and considerations presented in this paper are applicable to ‘experiential’ methodological approaches 14 (such as interpretative phenomenological analysis (IPA), narrative analysis or thematic analysis) which focus on understanding people’s views and experiences rather than discursive approaches (such as discourse analysis and conversation analysis) which are concerned with how language is used to construct a particular version of a reality. In relation to methods of data collection, we focus here on steps relevant to interviews and focus groups as these are one of the most common methods in LQR 15 and in primary care research as they allow exploration of people’s views and experiences.

Step 1: deciding on the length of data collection and timing and number of interviews

When employing LQR, researchers need to decide on three key inter-related aspects: (1) the length of the time needed for data collection, (2) timing and spacing of the interviews, and (3) number of interviews. Neale 1 suggested thinking of the overall length of data collection as the time frame of a qualitative longitudinal study, and of the number, timing and spacing of the interviews as the study tempo . Together, time frame and tempo can be seen as a framework for designing and conducting LQR.

Length of data collection

One of the key considerations when designing LQR is to decide on the overall length of the data collection period. The time frames of published longitudinal studies in primary care vary, as they are (rightly) guided by the study focus and research question. For example, a recent study on experiences of primary care HCPs on implementing remote consultations during the COVID-19 pandemic focused on the first wave of the pandemic and thus collected data over a period of 4 months (April–July 2020)20 (see also table 1 ). However, some topics may not lend themselves to such clear cut-off points. For example, when studying patients’ recovery from a particular treatment or adjustment to a new diagnosis, for example, asthma, it may be difficult for researchers to decide for how long they should follow the participants. Being guided by clinical information (eg, the ‘usual’ recovery time) might be useful for researchers while being mindful that individual trajectories may differ. Also, stopping data collection sooner may not capture some of the aspects of recovery. Finally, researchers may want to consider other factors such as availability of resources and staff.

Timing and spacing of interviews

The timing of the interviews is also crucial, and researchers may want to consider three approaches.

Approach 1: data collection around researcher-led events

One approach to deciding the timing of the interviews may involve researchers trying to define ‘events’ which may act as important time points for data collection. These time points need to be decided in relation to the population and topic under study. When exploring patient experiences of the illness trajectory, the timing of the interviews may be based on the events linked to their journey, which, for example, may involve talking to patients shortly after being diagnosed or after they complete their treatment. 16 17 One may also conduct interviews before and after the event, with the aim of understanding and comparing one’s expectations and experiences. 18 19 For example, Gordon et al studied the process of transition from trainee to trained doctor and conducted interviews with participants before they graduated from their degree (thus studying their expectations of what it means to become a doctor) and after they obtained their degree. 20 Similarly, Lester et al interviewed patients within 6 months of inception into the early intervention service and after being discharged to primary care. 19 Neale 1 suggested that having such clear events can be very helpful for establishing a clear baseline as well as a closure point for a qualitative longitudinal study and urged researchers to think carefully how the beginning and the end of the study will be defined.

Approach 2: data collection around participant-led events

Defining such events may not always be beneficial, and some highlighted the benefits of flexibility in deciding the timing of data collection 1 7 and allowing for conducting interviews around, for example, unexpected events. This may mean that researchers would be guided by the participants, who would advise when they experience any significant events in relation to the phenomena of interest. This approach is known as the mirroring process, 1 where data collection mirrors the events in participants’ lives. Consequently, researchers may be collecting data around events defined in the same way but which may not occur at the same intervals for all participants. 21 However, others also highlighted the drawbacks of this approach, noting that in larger samples, it may be difficult to keep track of all the participants and conduct interviews around the key events. 4

Approach 3: data collection based on pre-established, regular intervals

Deciding on the events may not always be possible. For example, Murray et al 13 highlighted that defining key events in relation to patient experience requires a researcher to have an understanding of a ‘typical’ illness trajectory of a given condition. For certain conditions, these may be less well defined. In such situations, it may be useful to conduct interviews at regular intervals over a period of time to facilitate an in-depth understanding of issues during a particular period rather than around key events. Nissim et al , who studied the experiences of patients with advanced cancer with the focus on the desire for hastened death, largely adopted this approach by interviewing their participants at 2–4 month intervals. 22 However, they also shortened these intervals in a number of scenarios including when participants started new treatments; self-reported measures indicated a change in their physical or psychosocial distress or patients’ condition began deteriorating. The study thus highlights the benefits of a flexible approach, combining data collection at regular intervals with participant-led events.

Number of interviews

The third aspect, the number of the interviews, will be partially framed by the two aspects discussed previously: the length of data collection and timing of the interviews. For example, if a researcher decides to collect data over a 1-year period, the significant events participants experience in their lives will somewhat indicate the number of interviews as well. However, it still leaves researchers scope to decide on the number of interviews. Neale et al 1 23 suggested that one way of viewing LQR may be to see it on a spectrum from intensive to extensive. The most intensive approach may mean that the numerous data collection points can lead to almost blurred boundaries between time points, which have been referred to as a ‘description through time’. 1 23

Regardless of the approach, it is crucial to plan the length of data collection, timing and frequency of the interviews to facilitate the primary aim of the LQR, which is to study change and continuity. 11 Also, these three aspects will need to be guided not only by the research question but also by resources and (existing) expertise within the team. Having multidisciplinary teams can be beneficial as advice from both clinicians and patients 24 on, for example, a typical clinical pathway or illness trajectory can be crucial in deciding on the timing and number of interviews and, ultimately, the success of the study.

Step 2: planning recruitment: attrition versus oversampling

Recruitment and sampling are important aspects of all qualitative research but can be particularly challenging in LQR. One of the key aspects is to decide on sample size, which may have numerous implications.

First, researchers need to strike a fine balance between sampling a sufficient number of participants and oversampling. While it is often recommended that researchers allow for sample attrition by recruiting more participants for the initial interviews than needed, in the studies where retention is high, this may lead to an excessively large sample and dataset. In this case, researchers may have to decide whether they want to follow up all the participants or a subset, taking the implications of that into account. For example, Calman et al described how initial oversampling of their participants (caregivers of cancer patients) led to a decision not to interview some participants at subsequent time points, which created tensions between researchers and participants. 4 Equally, high levels of attrition may lead to bias in the sample and the subsequent study results. 25 For example, Lester et al highlighted that they faced problems in accessing contact details of participants for the follow-up interview 3 years later and thus had relatively high attrition rate (33% of participants took part in the follow-up interview). 19

Second, as in all qualitative research, sample size will influence the depth of the analysis. Smaller samples may allow a more in-depth understanding of individual experiences and lend themselves well to methodologies that value an idiographic approach (eg, phenomenology). For example, Smith conducted interviews with four women as case studies to develop an initial theory of transitions to motherhood. In contrast, larger sample sizes may allow, through their breadth, the identification of patterns and the influence of external factors shaping individuals’ experiences to be recognised. 1 Neale 1 also pointed out that a small number of participants do not necessarily mean a small dataset, given the number of times participants might be interviewed.

Step 3: approaching data collection: asking the same or different questions

One of the key considerations when conducting subsequent interviews in LQR is deciding on what questions will be asked at each time point. Holland et al 3 suggested two approaches: one involves researchers asking the same set of questions at each time point, thus facilitating close mapping of the data at all time points. The second involves anchoring data collection on specific topics of interest which in turn may mean asking the same and/or different questions related to these topics. The reason for this is that some questions will only be relevant at particular time points. This will be especially relevant for researchers conducting interviews around key events, as described earlier. For example, in interviews with patients with limiting illness over 18 months, Worth et al covered the majority of the same topics at all time points (eg, patients’ needs) while also asking some questions only at particular time points (eg, about illness history at interview one only). 26 In contrast, Lester et al used two different topic guides and asked different questions at each time point. 19 Researchers need to consider whether and how participants may be encouraged to discuss change in their lives. Here, we outline three approaches for doing this. One approach may involve providing a participant with a summary of a previous interview at the beginning of each interview. 27 This may be useful in providing a starting point for the subsequent interview and can be an example of member checking, an approach used to enhance trustworthiness of qualitative data. 28 However, care must be taken when preparing such a summary as researchers could inadvertently impose their interpretations of the previous interview, thus distorting the participant’s story and affecting how they approach the subsequent interview. An approach facilitating a dialogue where a researcher summarises the previous interview(s) while inviting participants’ views on it might be more constructive. Such an approach can provide an opportunity for participant reflection and enhance analysis (see step 4). A second approach may involve focusing the summary on more factual events, thus acting as a reminder of when the last interview took place. A third approach may be to encourage participants to reflect on any changes they have witnessed in their lives. Researchers may want to ask participants directly whether they have experienced any changes in their lives, as well as what remained the same, and more importantly, how they feel about it. For example, Lawton et al used this approach when studying the experiences of patients with diabetes transitioning from specialist care to primary care. They encouraged participants to reflect on any changes related to their contact with diabetes services and HCPs since their last interview, as well as their understandings of why their service contact had changed over time. 29

Step 4: planning and conducting the analysis, and writing-up findings

When planning and conducting analysis in LQR, the researchers should consider (1) aims and questions that guide the analysis, (2) which approach to the analysis and writing up is appropriate for the research questions and objectives, and (3) practicalities involved in the analysis.

Aims and questions guiding LQR analysis

As the main aim of LQR is to identify change and continuity over time in phenomena of interest, the analysis needs to focus on exploring and identifying how and why change occurs or not over the study period. The analysis may also aim to identify different types of change. Researchers may want to explore the types of change proposed by Lewis 5 : individual, service, policy and structural; narrative (ie, ‘unfolding of individual stories’); participant’s reinterpretations (ie, ‘rethinking or retelling of experiences described earlier’); and researcher’s reinterpretations (eg, of what the participant described earlier). It is also important to identify when and why change is absent, and what remains stable and consistent and why.

Asking different types of questions of the data can help guide the analysis. Researchers need to relate to the research aims and questions, explore the different types of change and strive for a comprehensive understanding of the dataset, including how the analytical categories and codes relate to each other. For example, Saldaña 7 suggests using three types of questions to facilitate the analytical process: framing questions to capture the context and influences (eg, what contextual and intervening conditions appear to influence and affect participant changes through time?); descriptive questions to capture information to help answer questions (eg, what happens, increases or emerges through time?); and analytical and interpretive questions to integrate the descriptive and framing information (eg, which changes interrelate through time?).

Approaches to analysis

After deciding on research question/aims and the data collection methods, researchers need to select an appropriate analytical approach. They may want to consider two common approaches (or a combination of both) commonly described: (1) recurrent cross-sectional (ie, comparing multiple time points) and (2) trajectory or longitudinal (ie, identifying development or narratives over time). 4 9 12 Using a theoretical approach/framework may help decide on the approach to analysis and presentation of findings 4 ; for example, Murphy et al used the normalisation process theory constructs to structure the coding framework in their longitudinal study of the implementation of remote consultations in primary care during the COVID-19 pandemic.

Recurrent cross-sectional analysis focuses on changes and themes at different time points at the level of the whole sample. 4 9 12 In this approach, each round of data analysis explores a particular moment in time, but it should also aim to capture the temporal aspect and change between time points. Helpful approaches include thematic analysis (especially when the codes used capture aspects of change/stability) and framework-based analysis (eg, charting themes per time points). The strength of the recurrent cross-sectional approach is in that it enables a comparison and identification of patterns across the whole sample and that it often remains grounded in the data. The drawback may be difficulty in capturing individual narratives over time, 9 which in turn may result in a description of each time point rather than an understanding of change. 4

Trajectory or longitudinal analysis focuses on change of individuals or groups to identify trajectories of change over time. 12 It needs to include the same participants at different time points and can be facilitated by developing ‘case’ summaries or narratives that capture the changes and key themes across time for each participant. IPA might be particularly suitable to this approach, and a framework analysis may also be useful to identify the types of trajectories for subgroups of participants. The trajectory approach enables capturing and presenting the temporality of data, but it can be more difficult to capture and present patterns across the sample. With complex LQR datasets, combining cross-sectional and trajectory approaches and multiple types of analysis may be needed to capture the various aspects of the data. 9

Writing up the findings

As writing up the findings can form a part of, or refine, the analysis in qualitative research, it may be helpful to consider the analytical approach together with an approach to presenting the findings. Farr and Nizza 15 identified two common approaches to presenting the findings in longitudinal IPA papers, which may be relevant to other methodologies as well.

In the ‘themes tied to time points’ approach, each theme captures a time point or stage and includes a description of all aspects of the participants’ experiences relevant to that time point. In other words, each theme illustrates the different experiences apparent at each time point that contribute to the overall process of change/transition over time (eg, pre-event and postevent). Therefore, different themes could be identified at different time points. This approach may help present findings from the recurrent cross-sectional analysis . For example, Smith described women’s transitions to motherhood at different time points during pregnancy and after giving birth, with themes such as ‘Early pregnancy: adjustment and uncertainty’. 18

In the ‘themes spanning time’ approach, the findings are presented in one set of themes with each theme describing change over time. It may be that the focus is on a subset of themes to allow for including a more nuanced and in-depth account of change and commonalities and differences between participants. This approach may help present findings from the trajectory/longitudinal analysis and include descriptions of ‘cases’ or groups/types of trajectories. Most studies in primary care presented in table 1 used this approach; for example, Lawton et al captured the changes over time in patients’ perceptions and experiences of transitions from secondary to primary diabetes care within themes, such as ‘Practice-based care: a mixed blessing’. 29

A combined approach is also possible, such as with one theme that is divided into time points and other themes which span time. For example, Murphy et al 30 first summarised the changes over time during the transition to remote consulting and then used theoretical concepts to describe different types of changes. In all approaches it can help to present a single case and then highlight similarities and differences with other participants, label the quotes to indicate the participant and time point, and use paired quotes from the same participant that show change/progression (eg, before and after) 15 (eg, see Lester et al 19 ).

Practical considerations

With LQR analysis, researchers need to carefully think through and plan how to best manage the practical aspects of the analysis. First, this involves data management—LQR often generates large amounts of data over a prolonged period, so thoughtful, consistent and secure data management is critical. Researchers should plan consistent record-keeping (eg, labelling the interviews, researchers involved, recording summaries and reflections) and data anonymisation processes (eg, when and how it should occur) to allow engagement with participants over longer time while protecting their identities. It may help to record other relevant details to inform the analysis and interpretation, especially at later stages and in longer studies. These may include contextual details, such as records of events, changing policies, media stories, etc, which are relevant to the research topic. Agreeing a consistent approach to note-taking and researcher reflexivity can help capture, access and use the researchers’ reflections and reinterpretations over time.

Second, it is important to plan when the analysis takes place (eg, after each interview, sets of interviews, time points, at the end), what tools and strategies are used to manage the process and the amount of data, and who is involved. For example, Lewis 5 describes using different types of analysis at different points: summarising each interview after the interview within a framework organised by key themes (cross-sectional analysis) and developing ‘whole case’ summaries (a narrative analysis) after a number of interviews. Similarly, Thompson and Holland 9 describe a provisional analysis after each interview focused on processual features (eg, structure and absences), substantive content and researcher’s reflections; then after a few interviews writing a ‘summary narrative’ for each location, identifying local themes and ‘case profiles’, and tracing changes and continuities in the individual narratives over time. Summarising and conducting a provisional analysis after each interview can help inform future data collection and make incremental progress with the analysis. Analysing the whole dataset at a later or the end stage of the study may be overwhelming when faced with a large dataset but may also enable more global, holistic meaning-making through an immersive and intense analysis of the whole dataset (rather than small ‘chunks’ of the data). Working with bigger datasets or longer studies often requires a team-based approach with different researchers contributing to different parts of the study and analytical process, which highlights the need for planning and consistency of the aspects discussed previously.

Finally, researchers need to consider the implications of the sampling on analysis and data management. Overly heterogeneous samples add complexity as comparisons could be made not only between participants and time points but also between groups of participants. For example, Calman et al 4 describe the challenges of analysing data from patients with different types of cancer and trying to identify common trajectories. Analysing data from multiple types of health professionals or patients can make it more difficult to identify common trajectories than when focusing the data collection and analysis on a more homogeneous group from the outset. However, the differences between subgroups of participants may only become apparent during data collection and analysis. In this case, the use of frameworks can help with analysing and comparing data between groups of participants.

Conducting ethical LQR in primary care

LQR is subject to the same ethical concerns and considerations as qualitative research. However, given the immersive and prolonged nature of the approach, there may be more opportunities for ethical complications to arise. LQR has the potential to affect participants and researchers in particular ways that warrant special consideration. Care must be taken to avoid undue intrusion into people’s lives and to minimise the distortion of the experience being researched. 3 7 Some ethical issues may take on a particular salience when LQR is conducted by clinicians-as-researchers in primary care, so it is vital that they understand and plan for how to mitigate these issues.

Issues of confidentiality and consent

Collecting data at multiple time points generates more data, and the amount and depth of data generated means that participants may be more readily identifiable, particularly in research within organisations or with discrete populations such as primary care, where patients may be more identifiable to clinicians than in other settings. Participants must be made aware of this and informed about how researchers will protect their privacy and confidentiality. As such, consent must be seen as an ongoing iterative process, 3 4 with researchers informing participants of changes to the study or new developments as the research progresses to ensure their consent is always informed. Study materials should be clear, easy to follow, and prepared or reviewed by stakeholders, including patient and public involvement (PPI) contributors to ensure that they are sufficiently informative and acceptable to potential participants. They should provide comprehensive information about how the large volume of data will be securely stored and used in the research. Each time data is collected; participants must be informed of their right to withdraw from the study without their healthcare or rights being affected. In some instances, they may also need to be informed that data that have already been published cannot be withdrawn.

Establishing, maintaining and ending research relationships

Rapport building is an important part of any relationship between researchers and participants. Deepening relationships based on trust and familiarity invariably enrich the data and offer opportunities for producing a more complete analysis. 13 In LQR, researchers need to take care to ensure that relationships with participants do not become exploitative 3 and that appropriate boundaries are maintained. Clinician–researchers may find that disclosing their clinical status facilitates rapport-building and interviewing their own patients, with whom they have already established a rapport, may increase research participation, particularly among ‘seldom heard’ groups. 31 However, as patients may feel obliged to take part in research conducted by their clinician, it is important that invitations are made through a third party rather than by the clinician themselves.

There is potential for ‘blurred lines’ between participants and researchers to occur due to increasing familiarity and the repeated interactions that characterise LQR. For instance, Calman et al 4 found that the participants in their LQR study turned to researchers for information or advice about their diagnoses. This may particularly apply in LQR in primary care with clinicians as researchers and highlights the need to have a plan in place to deal with such occurrences. We suggest that primary care researchers can develop and maintain appropriate boundaries with clear information, discussions and reminders of the researchers’ role, and clarity over what they can and cannot offer participants. It is the researcher’s responsibility to ensure that they maintain appropriate professional boundaries and that participants remain safe. They might do this by acknowledging their dual role as clinician and researcher upfront, then explaining that offering medical advice in a research context is inappropriate, so patients should seek advice from their own clinician for any medical issues they face. Conversely, Hoddinott, a general practitioner (GP), suggests clinicians can offer advice, but that they should tell participants to raise their questions at the end of the interview. 31

A common ethical concern for qualitative research relationships is the disparity of power between researchers and participants, with power being presumed to sit with researchers and particularly clinicians-as-researchers. However, Christensen 32 argues that power does not reside with the people but is embedded in the research process and can be negotiated. By its nature, LQR offers multiple opportunities to negotiate power and to minimise its impact on the research participants and process. To that end, researchers should carefully document the impact of relationships on the research and participants. 3 This will provide opportunities to reflect on and address power imbalances, in addition to providing helpful context for understanding the data. Issues of power may not always be a concern—for example, in the case of a GP interviewing GPs. Literature on this suggests that being a GP and having insider knowledge facilitates the research process and enrichens the data. 33 It has been suggested that this is because of a shared knowledge and shared common experience. However, we would caution against presuming that sharing an experience is synonymous with sharing the same perspective. Researchers must set aside their prior assumptions and ask participants to explain what they assume to be shared assumptions. This may also help to overcome subsequent potential biases that might arise in analysis.

Participant attrition in LQR can be associated with power disparities, lack of rapport between researchers and participants, participant characteristics (eg, cognitive decline) or participation fatigue (including because of repetitious questions). As discussed in step 2, attrition needs to be considered when designing the research, and attempts to mitigate its impact should be implemented. 13 Establishing good rapport between researchers and participants may decrease the likelihood of participant attrition. 34 Efforts to do this need also to be considered in the design stage and decisions over whether participants interact with the same or various researchers need to be made. This is particularly important as there is also more chance of researcher attrition, given the length of LQR projects, 4 so teams should consider how to manage relationships with participants in the event of a researcher leaving midway through a project.

Equally, thought needs to be given to ending research relationships in LQR in a way that is satisfying for the participants. This needs to be managed from the outset by giving participants clear information about how many interactions they can expect to have with the research team. It may be appropriate to offer participants an opportunity to debrief at the end of the study to discuss their experience of the research and provide a defined endpoint. 4 This opportunity to debrief may be particularly important if the research has been conducted by a clinician based in the patients’ general practice, where there is potential for them to see each other outside of the research context. In this case, clinician–researchers should discuss the participants’ feelings about seeing them in their general practice and whether it is appropriate to make an appointment with them in future.

Emotional implications for participants and researchers

Consideration about the emotional implications of taking part in LQR is particularly important as the nature of the study design means that participants may be invited to discuss stressful, distressing or sensitive topics repeatedly over a period of time. Ethics committees may be concerned about the impact of asking people to discuss sensitive issues, 35 when discussing their experiences with a researcher may actually be cathartic. 36 In fact, LQR may offer more opportunities for catharsis than those found in other types of qualitative design. Murray et al 13 found that participants wanted to talk about sensitive issues, like death and dying, that they sometimes found it easier to talk to a researcher, and that talking in research settings made it easier for them to discuss these issues with friends and family.

LQR also has emotional implications for researchers 37 —even reading transcripts can provoke an emotional reaction. 38 Prolonged interactions with participants and data, particularly on sensitive or distressing topics, may exacerbate emotional reactions. Equally, researchers working with participants who might die during the course of the study (eg, Nissim et al ’s study on desire for hastened death 22 ) need to have a plan in place to deal with potential feelings of grief and loss. With all these risk factors, researchers may be at increased risk of burnout or ‘researcher saturation’ 39 in LQR, given the sustained nature of their involvement in the research. Researcher saturation may manifest as headaches, anxiety and distress 39 and may be the result of inappropriate management of emotional tension. Those involved in longitudinal studies on sensitive or distressing topics, in which they are repeatedly exposed to traumatic stories, may be most at risk. It is worth remembering that distressing data can affect anyone who interacts with it, including researchers, but also transcriptionists. In designing LQR, researchers have a responsibility to mitigate risk for everyone involved in the study, from participants to junior research assistants to typists.

Parker and O’Reilly 40 propose a framework for managing ethical risk. It involves raising awareness among the research community about the impact of qualitative research on researchers. Although it is not specific to LQR, it certainly is applicable, particularly in primary care, where it may be assumed that the skills associated with qualitative interviewing are similar to clinical interviewing in consultations. 31 It calls for specialist training for researchers to help them appraise, identify and manage risk. It also highlights the importance of transparent risk assessment by institutions and calls for teams to adopt a collaborative approach, ensuring researchers have an established support network and access to confidential spaces for debriefing.

Ethical conduct must be iterative and reflexive

Like all qualitative research, the emergent and iterative nature of LQR studies in primary care means that ethical issues cannot be entirely predicted. Therefore, it is important that researchers approach ethical risk assessment in qualitative research as a reflexive and iterative process. 41 This applies equally to LQR. Teams must have explicit processes in place to increase the chances of ethical concerns being addressed before they have an adverse effect on participants. PPI can ensure that researchers are aware of the scope and range of possible ethical issues that may arise in their research. 42 Reflexivity, the consideration of the impact of the researcher on the researched, 43 is an important practice in all aspects of LQR. Self-awareness and reflection throughout can prevent ethical quandaries from arising and can minimise the researcher’s impact on the research process.

Contribution to family medicine and community health research

Throughout the previous sections, we have described how LQR could be used to study change and continuity in healthcare, drawing on examples from primary and community care. In this section, we make a further case for how LQR can be a valuable approach in family medicine and community health research. We summarise five potential contributions of LQR and its relevance to these fields.

Exploring views and experiences of a variety of participants over time

Exploring views and experiences of participants over time is one of the most commonly used and suggested uses of LQR, which can be invaluable in family medicine. First, following patients’ and/or carers’ experiences of health and care in primary and community settings can aid in identifying what matters to them over time and in recognising their (changing) needs. 13 Previous studies have explored patients’ and/or carers’ changing experiences of different conditions, including diabetes, 44 chronic obstructive pulmonary disease 45 or heart failure. 46 Second, LQR can be used to study HCPs’ views and experiences within their work context. It can be useful in identifying professionals’ (changing) views, experiences of how they deliver care or the challenges they face. Third, LQR can be used to study experiences of other key actors in family medicine, such as policy makers responsible for designing or commissioning primary care services. 47

Following participants through important transitions

LQR may also be useful when following participants through important transitions and exploring how they adjust, make sense of and manage them. 3 4 For patients, this may mean following them through transitions related to their health and healthcare use, and identifying key barriers and facilitators they face when transitioning through services (eg, see Lester et al and Lawton et al in table 1 ). 19 29 Transitions, such as changing jobs or progressing through career pathways, can also be a useful lens when studying HCPs’ experiences (eg, Gordon et al 20 ).

Studying implementation of new practices, processes or interventions

LQR can also be used to study the process of implementing new practices, processes or interventions alongside clinical trials, as well as in routine clinical care, 5 thus highlighting barriers and facilitators to embedding new processes, practices or interventions at different stages. Qualitative methods are now a well-recognised way of studying implementation of interventions alongside evaluative studies (also known as process evaluation 48 ) and in service evaluations; they can contribute to an understanding of what is implemented and how, how an intervention produces change, and how context can affect implementation and outcomes of an intervention. 48 However, the longitudinal design is still not widely used, including in family medicine. Studies which used it highlighted the benefits of doing so, including more dynamic understandings of key barriers and facilitators to implementation of new processes, 30 and whether and how these barriers and facilitators may be specific to different stages of the project. 49

Exploring the importance of historical change and/or the macro context on individuals’ lives

As highlighted by Holland, 8 LQR can also contribute to studying change at a historic level, and the relationship between micro, meso and macro dimensions can be very helpful when illuminating the relationship between individual experiences and social change. 1 The COVID-19 pandemic can be one example of such historical change, which may be of relevance for studying both patients’ and HCPs’ experiences (eg, studies by Murphy et al 50 or Guzman et al 51 ). These studies can highlight how external events may affect both patients’ and HCPs’ experiences of receiving and delivering care, and how LQR is able to capture participants’ evolving experiences in relation to historical change.

Developing a deeper understanding of phenomena under study

Collection of data over time can also contribute to building a theoretical model by gaining a more in-depth understanding of phenomena of interest. For example, Smith 18 highlighted the value of longitudinal interviews in gaining a detailed insight of women’s experiences during and after pregnancy, which led to developing a theoretical model of women’s transition to motherhood. 18 Equally, doing numerous interviews not only can illuminate the process of change but also, through building better rapport with participants, can facilitate collection of more detailed data. 11

Conclusions

LQR has much to offer family medicine and community health: allowing exploration of views and experiences of a variety of participants over time; following participants through important transitions; studying implementation of new practices, processes or interventions; exploring the importance of historical change and/or the macro context on individuals’ lives; and developing a deeper understanding of phenomena under study. While a lot of attention has been paid to using LQR when studying patients’ and/or carers’ experiences, we highlight its value when studying a variety of actors relevant to family medicine, including HCPs and policy makers. By introducing the readers to some of the key considerations related to planning, conducting and analysing LQR in family medicine and community health, we hope it will help the primary care community to use this approach and lead to the conduct of high-quality research and, consequently, improved healthcare.

Publication history

Open access
Published: 20 August 2024

“Because people don’t know what it is, they don’t really know it exists” : a qualitative study of postgraduate medical educators’ perceptions of dyscalculia

Laura Josephine Cheetham 1

BMC Medical Education volume 24 , Article number: 896 ( 2024 ) Cite this article

142 Accesses

Metrics details

Dyscalculia is defined as a specific learning difference or neurodiversity. Despite a move within postgraduate medical education (PGME) towards promoting inclusivity and addressing differential attainment, dyscalculia remains an unexplored area.

Using an interpretivist, constructivist, qualitative methodology, this scoping study explores PGME educators’ attitudes, understanding and perceived challenges of supporting doctors in training (DiT) with dyscalculia. Through purposive sampling, semi-structured interviews and reflexive thematic analysis, the stories of ten Wales-based PGME educators were explored.

Multiple themes emerged relating to lack of educator knowledge, experience and identification of learners with dyscalculia. Participants’ roles as educators and clinicians were inextricably linked, with PGME seen as deeply embedded in social interactions. Overall, a positive attitude towards doctors with dyscalculia underpinned the strongly DiT-centred approach to supporting learning, tempered by uncertainty over potential patient safety-related risks. Perceiving themselves as learners, educators saw the educator-learner relationship as a major learning route given the lack of dyscalculia training available, with experience leading to confidence.

Conclusions

Overall, educators perceived a need for greater dyscalculia awareness, understanding and knowledge, pre-emptive training and evidence-based, feasible guidance introduction. Although methodological limitations are inherent, this study constructs novel, detailed understanding from educators relating to dyscalculia in PGME, providing a basis for future research.

Peer Review reports

Dyscalculia is categorised as a specific learning difference or part of neurodiversity in the UK and a learning disability in North America. Learners with dyscalculia are said to have significant difficulties in numerical processing [ 1 ]. It is increasingly acknowledged that these relate to arithmetic, statistics, ordinance, number and code memorisation and recall, with other individual variance [ 2 , 3 ]. Here, I chose to use “specific learning difference” (SpLD) to acknowledge that some feel SpLDs relate to a difference in learning needs but may not always result in learners identifying as disabled [ 4 , 5 ]. Most contemporary definitions state that these challenges are out of keeping with learner age, intelligence level and educational background [ 1 ], evolve over time but persist during adulthood.

Dyscalculia is a comparatively recently recognised SpLD with a relatively low ‘diagnosed’ population prevalence, with estimates ranging between 3% and 7% [ 2 ]. Awareness of dyscalculia is lower than more highly ‘diagnosed’ SpLDs such as dyslexia, dyspraxia and Attention Deficit and Hyperactivity Disorder (ADHD) [ 3 ], with a paucity of research-based evidence, especially relating to adult learners [ 2 ]. Of the two studies exploring dyscalculia in Higher Education Institutions (HEI), from the perspective of learners, both Drew [ 3 ] and Lynn [ 6 , 7 ] outlined poor understanding within adult learning environments and a lack of recognition of dyscalculia and of HEI learning support provision. Additionally, learner challenges were different to those described in dyslexia and dyspraxia studies, with understanding and perception of time, distance, finances, non-integer numbers, memorisation and recall of numerical codes and values being frequent issues. Potential complexity arose through possible coexistence of dyslexia or mathematical anxiety, varying learner-developed coping strategies effectiveness and learner coping mechanisms becoming ineffective during undergraduate or postgraduate education [ 3 ]. Drew’s [ 3 ] three healthcare learner participants had also experienced potential fitness to practice concerns either from themselves or educators.

Context for medical education

The number of DiT in postgraduate medical education (PGME) with dyscalculia remains unknown. Similarly, awareness levels of PGME educators, or what their experiences might be, of facilitating the learning of DiT with dyscalculia is unexplored. Indeed, there has been no published research to date relating to dyscalculia in PGME or undergraduate medical education.

This paucity of knowledge is set in the context of a presumed increasing proportion of UK PGME DiT learners with a disability resulting from increasing numbers of medical students in the UK reporting a disability [ 8 , 9 ] and in other countries such as Australia [ 10 ]. Data collection via the statutory education bodies, and the medical regulator, the General Medical Council (GMC), is challenging given the voluntary nature of SpLD declaration and persisting concerns regarding discrimination and stigma [ 11 ]. My Freedom of Information request to the GMC in February 2022 revealed that 1.25% of registered doctors have declared a ‘learning disability’ (including SpLDs) such as dyslexia.

The impact of dyscalculia on DiT and their educators is unknown. The GMC defines differential attainment as the gap in assessment outcomes between learners grouped by protected characteristic [ 12 ]. It recently commissioned research into recommending education providers create more inclusive learning environments for disabled learners [ 13 ]. Other recent research indicates that differential attainment may persist from school-based examinations through to medical school exit ranking scores and onto PGME examinations [ 14 ].

Currently, there is no publicly available information addressing the support of PGME DiT with dyscalculia within the UK, and no known prospective screening in place. Support, including reasonable adjustments for PGME DiT with additional learning needs is accessed through, and coordinated by, education bodies’ Professional Support Units (PSU), including Health Educator and Improvement Wales’ (HEIW) PSU in Wales. More widely, HEIW, the education body in Wales, is responsible for delivery and quality management of PGME in accordance with UK-level standards set by the GMC and medical speciality Royal Colleges and Faculties. Reasonable adjustments are changes, additions, or the removal of learning environment elements to provide learners with additional support and remediate disadvantage [ 15 ]. They are frequently purported to enable learners with SpLDs to learn and perform to their potential, although evidence for this is variable [ 16 , 17 ], with a marked lack of research relating to adult learners with dyscalculia.

Despite recent shifts from more teacher-centred to more student-centred learning approaches, with a range of andrological learning theories emphasising the learner being at the centre of learning [ 18 ], the educationalist remains a key element of many learning theories and PGME. Many PGME educators are practising doctors and, alongside this, must maintain a contemporaneous understanding of learning theory, training delivery, teaching, supervision and wider educational policies. However, how they approach, or would plan to approach, supporting learning for DiT with dyscalculia is unknown. Therefore, exploring the attitudes and perspectives of PGME DiT or educators regarding dyscalculia, both unresearched previously, through this paradigm could be valuable [ 19 ].

Educational challenges, learning needs and local context

For educators, a pivotal part of facilitating learning is understanding the learning needs of learners, felt to be a cornerstone of adult pedagogy [ 19 , 20 ]. Davis et al. [ 20 ] define learning needs as ‘’any gap between what is and what should be”. These can be established subjectively, objectively or a combination approach. However, Grant [ 19 ] cautions against conducting limiting, formulaic learning need assessments.

Identifying attitudes and understanding

Furthermore, attitudes are said to frame educator approaches and thus the learning experiences learners will have [ 21 ]. Attitudes are defined as “a feeling or opinion about something or someone, or a way of behaving that is caused by this” [ 22 ]. Interpretivism offers a route to exploring such attitudes by outlining that there is no one universal truth or fact, but instead many equally valid realities constructed by different individuals, their meaning-making and their experiences.

Again, research is absent within medical education relating to educators’ attitudes and understanding of learners with dyscalculia and how these might influence their approach. Current research indicates attitudes of HEI educators are often formed through their past - or absent past - experiences, lack of legal obligations knowledge and, for healthcare educators, the patient-centred role of clinical learners [ 23 ]. These appeared to help form their approach to facilitating teaching [ 23 , 24 , 25 , 26 , 27 , 28 , 29 ]. Therefore, understanding PGME educationalist attitudes towards DiT with dyscalculia would be important in helping understand how learning is facilitated.

Thus, there exists a clear lack of published knowledge and understanding regarding dyscalculia set in a context of increasing awareness of the importance of inclusivity and addressing differential attainment within medical education. The importance of educators in facilitating learning of such PGME DiT suggests that exploring their perspectives and understanding could provide valuable insights into this understudied area. Such knowledge could provide benefit to learners and those designing and delivering programmes of learning for DiT and programmes of support for educators. This includes potentially exploring the attitudes and understanding of educators who have no direct experience of dyscalculia, given that this could be the context in which a DiT with dyscalculia finds themselves in a postgraduate learning environment. Assumptions, or perceptions generated without experience or knowledge of dyscalculia, are equally important to understand in a learning context when the awareness level and prevalence of dyscalculia within DiT is unknown. This allows understanding of how learning for DiT with dyscalculia may be facilitated in a knowledge and understanding-poor context, and furthermore, what educator needs exist and what further research is needed.

Consequently, the research question and aims below were constructed.

Research question:

What are the attitudes towards , understanding and perceived challenges of dyscalculia within postgraduate medical training by postgraduate medical educators?

Research aims:

To explore the awareness and understanding of dyscalculia that postgraduate medical educators may or may not have.

To determine the attitudes that postgraduate educators have towards dyscalculia and DiT with dyscalculia and how these might be formed.

To establish the challenges that postgraduate educators perceive they encounter or might encounter when facilitating the learning of a DiT who has dyscalculia.

To provide the basis for future research studies exploring how to facilitate the learning of DiT with dyscalculia during postgraduate training.

This scoping study was designed using an interpretivist, constructivist qualitative methodology to understand the phenomenon, in detail [ 30 ] as part of a Masters in Medical Education programme.

A literature review was undertaken to enable research question and aim construction. Firstly, a focused literature search ascertained the level, and lack, of evidence existing for the study phenomenon followed by four, progressively broader, searches to understand the wider context, between October 2021 and May 2022, revealing the lack of, or limited, literature existing.

The literature search was then performed by me using guidance [ 31 , 32 ] and twenty-seven research search engines. Additionally, a spectrum of journals was searched directly. Literature was also identified through snowballing.

Keyword search terms were developed and refined during the literature search, with limits on further broadening the search based on relevance to the areas of interest: postgraduate learners, educators and SpLDs using different term combinations exploring dyscalculia and postgraduate education, SpLDs and postgraduate healthcare learners, postgraduate educators and attitudes or knowledge or experiences of facilitating learning (appendix 1, supplementary material). Broadening of search terms allowed for exploration of analogous phenomena (other SpLDs), in other postgraduate healthcare and learning contexts, and for further research question development, returning 2,638 items. Papers were initially screened using their titles and the inclusion/exclusion criteria (below) generating 182 articles, papers and theses, with abstracts and reference lists reviewed. 174 papers and eight PhD theses were appraised using guidance [ 32 , 33 , 34 ].

Inclusion criteria were:

Primary research or review.

International or UK-based research reported in English.

Postgraduate higher education (university-level, post Bachelor or equivalent degree) setting.

Relating to postgraduate or higher educationalists’ views from any discipline and knowledge of SpLDs.

Exclusion criteria were:

Literature published in non-English languages.

Opinion and commentary articles.

Undergraduate setting, unless mixed cohort/study with postgraduate learners.

Ultimately, 17 papers and one doctoral thesis were included. Whilst grey literature, this thesis [ 3 ] was included due to the dyscalculia-focused insights provided and limited adult-based dyscalculia research elsewhere. After literature appraisal, research aims and a research question were formed.

Semi-structured interviews were chosen to enable data collection and interpretation through a constructivist lens, via open enquiry rather than hypothesis testing [ 30 , 35 , 36 ]. Study participants were PGME educators, actively involved in DiT learning within any PGME programme within Wales whilst holding a Medical Trainer agreement with HEIW. Participants held a range of educationalist roles, from education supervisor to local speciality-specific Royal College tutor (local speciality training lead) to training programme director (responsible for delivery of speciality-specific training across a region).

Interview question and guide design (appendix 2, supplementary material) drew on the six qualitative and six quantitative research-based, validated published tools used to explore similar phenomena, particularly those of O’Hara [ 37 ], Ryder [ 38 ], L’Ecuyer [ 23 ] and Schabmann et al. [ 39 ]. Design also drew upon Cohen et al’s [ 40 ] recommendations of composing open, neutral questioning.

Interview format was piloted using a PGME educator from England (thus ineligible for study recruitment) with modifications resulting from participant feedback and through adopting reflexivity; as per Cohen et al. [ 41 ] and Malmqvist et al. [ 42 ]. Participant interviews took place between May and June 2022 and were recorded via the University-hosted Microsoft Teams platform, due to the pandemic-based situation and large geographical area involved, whilst maintaining interviewer-interviewee visibility during the dialogue [ 35 ]. Recruitment occurred via purposive sampling, through two HEIW gatekeepers, the national Directors of Postgraduate Secondary (hospital-based) and Primary (General Practice-based) Medical Training in Wales. An email-based invitation with project information was distributed to all postgraduate medical educators with a current HEIW Medical Trainer agreement, regularly engaging in the support of learners within PGME training, in Wales. In this case, the gatekeepers in HEIW were individuals who could grant permission and make contact with all potential eligible participants on behalf of myself, through their email databases, whilst adhering to UK data protection regulations [ 43 , 44 ].

Ethical considerations

Formal ethics approval was gained from the Cardiff University School of Medicine Research Ethics Committee. Health Research Authority ethics approval was considered but deemed unnecessary. Informed written and verbal participant consent was obtained prior to, and at the point of, interview respectively. Additionally, verbal consent for video recording was sought, offering audio recording or notetaking alternatives; however, participant discomfort was not reported. Mitigation options to avoid selection bias included selecting alternative volunteers if significant relationships between the researcher and participant had existed.

Invitations to participate were circulated to approximately 2,400 to 2,500 postgraduate secondary care trainers and 600 primary care trainers. 18 individuals indicated interest in participating, one cancelled and seven did not respond to follow-up within the two-month timeframe the MSc project schedule allowed for. Subsequent reasons given for two out of seven who subsequently responded out of timeframe included clinical demands and unexpected personal matters. 10 postgraduate educators were interviewed and all allowed video-based interview recording. Interviews lasted between 40 and 60 min. Interviews were transcribed verbatim by me and checked twice for accuracy, with participants assigned pseudonyms. Data analysis was conducted using reflexive thematic analysis (RTA) and undertaken by me, the author, as the single coder and Masters student, with transcripts analysed three times.

RTA followed the six-step approach of Braun et al. [ 45 ], Braun and Clarke [ 46 ] and Braun and Clarke [ 47 ], with a primarily inductive approach [ 47 , 48 ] through an iterative process. Both latent and semantic coding approaches were used, guided by meaning interpretation [ 49 ].

RTA allowed exploration through an interpretivist lens. Discussions persist regarding how RTA sample size sufficiency and ‘data saturation’ are determined, with RTA placing more emphasis on the analyst-based individualism of meaning-making. Therefore, mechanisms for determining thematic saturation are purportedly inconsistent and unreliable [ 50 ]. Consequently, sample size was based on the maximum number of participants recruited within the set project time limits.

Reflexivity

I strove to adopt reflexivity throughout, using a research diary and personal reflections, referring to Finlay [ 51 ] who stated that such subjectivity can evolve into an opportunity. My interest in the studied phenomenon resulted partially from my experiences as a DiT with SpLDs and from being a DiT representative. Acknowledging this was important given my perspective, as an intrinsic part of this research, could have affected data gathering, interpretation, and, ultimately, study findings through introducing insider status.

Additionally, holding an influential role within the research, with potential for ‘interviewer bias’ [ 52 ], I adopted Cohen et al.’s [ 53 ] recommendations, committing to conscious neutrality during interviews and use of an interview prompt list, whilst striving to maintain a reflexive approach. Alongside this, the impact on credibility of this study being part of a Masters project, limiting scale and timeframes were considered and mitigated by exploring these within the discussion and referring to this research as a scoping study.

Educators with limited to no direct experience of learners with dyscalculia knew little to nothing about dyscalculia (Fig. 1 ).

Summary of themes and subthemes generated

Furthermore, of the participants who did, these educators cited close second-hand experiences with family members or past learners with dyscalculia which helped shape their understanding of dyscalculia. Those that had no direct experience drew on empathy and generalisation, extrapolating from the greater knowledge and confidence they had in their understanding regarding dyslexia or other SpLDs or even analysis of the term ‘dyscalculia’ to form definitions and perceptions.

“Absolutely nothing… I saw it , [dyscalculia in the study invitation] didn’t know what it was and Googled it so very , very little really. I suppose in my simplistic surgical sieve head , I would just sort of apply the bits and pieces I know around dyslexia.” P10 .

All suggested dyscalculia represented a specific set of challenges and associated learning needs relating to numbers, numeracy or quantity where overall intelligence was preserved. Educators saw each learner as being an individual, therefore felt dyscalculia would present as a spectrum, with varying challenges and needs existing. Dyscalculia was seen as persisting lifelong, with the challenges and needs evolving with age and experiences. Common challenges suggested related to calculations, statistics, critical appraisal, awareness of time, organisation and recall of number-based information (such as job lists, blood results), spatial dimension quantification, prescribing, fast-paced tasks and emergencies, exams and learning-based fatigue or high cognitive load. Wellbeing issues relating to dyscalculia were also frequently perceived, with this potentially negatively affecting self-confidence and anxiety levels. All educators saw a key aspect of their role to be provision of pastoral support, in enabling effective learning.

Past educator experiences of dyscalculia were linked to perceived confidence in ability to support future DiT with dyscalculia. Educators felt their limited knowledge, with the primary source of information regarding dyscalculia being DiT with dyscalculia themselves, to be reflective of low levels of awareness, knowledge and identification within PGME, education systems and wider society. Some felt the proportion of PGME DiT with dyscalculia would be lower than for the general population, following challenging assessments during secondary school and undergraduate studies, but might be changing given widening participation initiatives within medicine. Others saw a potential hidden iceberg of later career stage doctors with unidentified dyscalculia who had completed training when speciality assessments relied less on numeracy.

“[It] was only because of my own experiences and my [relative] that I was able to kind of wheedle around and , you know , make them recognise that there was an issue and that , you know. But I - I think had I not had an awareness of it , I probably wouldn’t have recognised it , I think.” P7 .

Educators frequently used empathy when attempting to understand dyscalculia. Educators had mixed feelings about ‘labelling’ DiT as having dyscalculia although all felt identification of additional learning needs was key. Some felt labels were necessary to enable and better support DiT with dyscalculia in the absence of effective, feasible, inclusive education approaches, others noted the potential for stigma or generalisations.

None of the participants had received dyscalculia training. Some felt widespread societal normalisation of mathematics challenges adversely impacted upon if, and at what educational stage, dyscalculia identification occurred and needs were recognised. Many felt assumptions might occur regarding dyscalculia through others making generalisations from better known SpLDs, including dyslexia and dyspraxia, in the absence of other knowledge sources but that these extrapolations could be inaccurate and unhelpful.

“And I think there’s a lot of ‘oh you’re just bad with numbers’ or ‘ohh , you just can’t do , you know people are just , I , I suspect there’s a lot of people who have just been told they’re not very good at maths , aren’t there? And it’s just , you know they can’t , can’t do it , which you know is not really very fair , is it?” P7 .

Many felt PGME might represent a critical juncture for DiT with dyscalculia, where effective coping mechanisms developed in the past become ineffective. A variety of such coping mechanisms were suggested or hypothesised, often outlined as depending on the dyscalculia-based experience level of the educator, including checking work with others, calculator use and avoidance of numeracy-dense work or specialities.

Mechanisms were generally viewed positively except where perceived to reduce the likelihood of a DiT recognising dyscalculia themselves and seeking support.

Most felt positively towards learners with dyscalculia and their learning facilitation, especially those with greater experience of dyscalculia. Many balanced this positivity with potential concerns regarding patient safety. Concerns focused especially on heavily numeracy-based tasks, fast-paced situations, or when working independently in surgical or emergency prescription-based situations. Overall, concerns were heightened due to the clinical patient-based context to PGME learning. Two participants felt that not all DiT with dyscalculia should be supported to continue training in particular specialities where numeracy skills were seen as critical, such as ophthalmology.

“I am , and it just seemed really unfair that this one small thing could potentially have such a big impact and could potentially prevent [them] progressing and succeeding in the way that I think you know , [they , they] had the potential to.” P6 .

Educators outlined a dependence on the bidirectionality of learner-educator relationships to best facilitate DiT learning per se, and it was felt all DiT had a responsibility to be honest with educators. Some cited potential barriers to this collaboration, including past negative learner experiences, felt stigma, limited educator time and frequent DiT rotations.

“It’s a wonderful opportunity for learning which I really enjoy , because I think that this is a two-way process. You know , I think the DiT gives you things that you reflect on and you should be giving the DiT things that they reflect on” P5 .

Most felt they would take a one-to-one learning approach for DiT with dyscalculia. Group-based, fast-paced or numeracy-rich, higher risk clinical activity-based teaching would be more challenging to cater for.

For some, patient safety uncertainties abutted with the duality of being a clinician and educator, with perceived difficulty in quantifying clinical risks associated with learning and educators’ clinical workload demands limiting available time and resources. Thus, many felt that their educator roles always needed to be tempered with their duties as a doctor, prioritising patient safety and quality of care above all else.

“So , it’s not so much the learning , uh , issue that worries me. I think even if someone had dyscalculia the , uh , concepts of medicine could be understood and the basic outline of what we’re doing , but actually you’ve got to be quite precise in the vocational aspect of , of , of the training , and if you get it wrong , it’s a potential major clinical risk and obviously patient safety has to come first in everything that , that we do.” P4 .

Educators wished strongly for pre-emptive support in facilitating the learning of DiT with dyscalculia, feeling great responsibility both for DiT learning but also for upholding clinical standards and safety. Many felt they would approach HEIW’s PSU for reactive support, including seeking learner ‘diagnosis’, although some predicted this support, and their knowledge, might be limited. However, two participants outlined positive experiences after seeking PSU support.

Most educator participants supported reasonable adjustment use if patient safety and quality of care remained prioritised and preserved. Other conditions for supporting reasonable adjustments included if they enabled without giving undue advantage and if educator-related workload was not overly burdensome. Those with experience of dyscalculia more confidently volunteered reasonable adjustments suggestions, ranging from calculation-table or App access to additional time for numeracy-rich activities. Some perceived a challenging divide between clinical educators and SpLD education experts who could make potentially unfeasible reasonable adjustment recommendations, with participants suggesting the importance of greater involvement of clinical educators in developing support processes.

“If I’m honest , I don’t think we do it very well…They’re [reasonable adjustments offered] very simplistic , … you know , they’re very much based on a sort of global ability rather than realising that processing and other things might be impacted… We’re , we’re probably behind the curve and not really doing what could be done” P8 .

Further example quotes for each theme and subtheme can be found within appendix 3, supplementary material.

Experience shapes educator knowledge, understanding and attitudes

This study reveals novel findings regarding dyscalculia in PGME within a vacuum of prior research. Notably, participants’ views towards PGME learners with dyscalculia, including DiT potential to learn, practise and develop effective coping strategies, were substantially more positive and empathetic than in the closest comparable healthcare studies of other SpLDs [ 23 , 24 , 27 , 29 , 54 ]. Furthermore, the potential impact of societal normalisation of numeracy challenges on awareness of, and attitudes towards, dyscalculia explored by some participants has only previously been noted by Drew [ 3 ].

Educators’ expressions of a sense of personal or healthcare-wide lack of awareness and understanding of dyscalculia aligns with the current UK position [ 2 ]. But they also built on this, outlining how generalisation from other SpLDs or disabilities was frequently used to bridge the dyscalculia knowledge gap with some not recognising this as potentially problematic. This suggests a need for enhanced awareness and understanding within the healthcare education community of the potential fallibility of using generalisation to support learners with poorly understood additional needs.

Moreover, no other studies have revealed that healthcare educators with personal experience of a learner relative with a SpLD displayed universally positive attitudes towards DiT with the same SpLD. Whilst this could reflect inter-study methodological differences, inter-professional differences or the increasing emphasis on compassionate clinical practice [ 55 ], it also suggests influence of educator experience in attitude formation.

In addition to their attitudes, the impact of prior experience of learners with dyscalculia on educators’ knowledge, understanding and confidence was often acknowledged as important by participants. This was seen to an extent in the closest comparable SpLD studies, [ 24 , 54 ] and further shows the diverse influence of past educationalist experiences, particularly the establishment of deep, longitudinal relative-based relationships, aligning with social constructivism [ 56 ].

Unlike HEI lecturers in dyslexia studies [ 24 , 54 ], who frequently questioned the needs of learners, educators saw DiT with dyscalculia as intelligent and high-functioning, having credible additional learning needs. Needs were seen as variable unlike elsewhere. Additionally, the level of detail constructed regarding educators’ perceptions of the needs, strengths and challenges of each DiT with dyscalculia, evolving over time and experience, is not seen in non-dyscalculia SpLD studies and only alluded to for dyscalculia [ 3 ]. These differences, which may be partially explained by varying methodologies or cultural norms regarding how different SpLDs are regarded, are important to better understand.

Furthermore, the preferred educator approach of individualising learning for DiT with dyscalculia is not seen elsewhere in the literature, although this aligns with supporting learning within their zone of proximal development (ZPD). Rather, Ryder and Norwich found HEI educators actually expressed negative attitudes towards individualising learning [ 24 ]. Methodological and SpLD-specific factors may contribute to these differences, with this study’s findings aligning more closely with Swanwick’s proposal that PGME often emulates apprenticeship-type learning [ 57 ]. It would be valuable to establish the efficacy of individualised PGME-based approaches to facilitating learning with dyscalculia from DiT and educator perspectives.

Greater educator support and training regarding dyscalculia is needed

Educators’ perceived need for wider awareness of dyscalculia, alongside greater pre-emptive training and guidance tailored towards dyscalculia within PGME learning environments has also been described for other SpLDs [ 23 , 58 , 59 ]. Greater research is needed to develop such awareness and evidence-based training, with similar needs identified more widely in HEI for dyscalculia [ 3 ] and for other SpLDs [ 23 , 24 , 27 ]. Akin to some participants, Swanwick and Morris [ 60 ] discuss the increasing expectations on clinical educationalists to deliver professional-level education and Sandhu [ 61 ] explores participants’ expressed need for greater faculty development whilst rectifying the deficit of evidence-base for PGME educators to use.

The crucial importance of the bidirectionality of the educator-learner relationship, with educators perceiving themselves as learners too, is only subtly alluded to elsewhere [ 3 ]. Given the bidirectional learning relationship was reportedly undermined by frequent DiT placement rotations, fast-paced clinical environments and shift-based training patterns, further exploration of the appropriateness of current UK PGME training design for DiT with dyscalculia could be important.

Coping strategies are important to better understand

As with this study, Drew’s research suggested coping strategies for learners with dyscalculia to be potentially important, effective and helpful but could have limitations [ 3 ]. However, this study provides the first examples of coping strategies, potential or already used, by DiT with dyscalculia. It is crucial that research to develop better understanding of both positive and negative dyscalculia-based coping mechanisms occurs in the future given the broad participant concerns.

Identification is key but not fully enabling

Educators perceived early identification of dyscalculia to be key, showing commonality with dyscalculia, dyslexia and dyspraxia-based studies [ 3 , 25 , 28 ]. That identification was not seen as an absolute solution reinforces the need for further research exploring other disabling factors. However, the witnessed or potential negatives of being ‘labelled’ following dyscalculia ‘diagnosis/identification’, outlined by some participants, have been found only minimally elsewhere within learner-based dyslexia and dyscalculia HEI studies [ 3 , 25 , 28 ]. Negative consequences to labelling included the attitudes learners encountered within the clinical community, suggesting a need to understand cultural norm-related impacts. In contrast, the far greater positives to identification, and the necessity of labelling perceived by educators, were also seen in other SpLD studies [ 3 , 25 , 28 ], enabling self-understanding and access to support. Certainly, the need for improved dyscalculia identification approaches and training is highlighted by the lack of educator confidence in identifying dyscalculia where they had no relative-based experience.

Within the UK, voluntary dyslexia ‘screening’ processes are now offered to some medical students and DiT and similar opportunities could be offered for dyscalculia in the future. Moreover, accumulating evidence indicates an ever-greater importance of establishing equity of learning opportunity and that identification has a positive performance effect for DiT with dyslexia [ 16 , 62 , 63 ].

The PGME clinical context may limit support

Whilst educators clearly adopted a strongly student-centred approach to supporting learning with dyscalculia, addressing the influence of the duality of clinical educator roles on this approach is important. Educator supportive intent was twinned with tension between balancing effective DiT learning with guaranteeing patient safety within diverse, predominantly clinical learning PGME environments, sharing commonalty with L’Ecuyer’s nursing study [ 23 ]. Swanwick and Morris [ 60 ] note this influence on delivering training, with Sandhu [ 61 ] exploring general concerns regarding risk and clinical learning.

Even more pronounced perceived patient safety concerns were expressed in other nursing SpLD studies [ 23 , 29 , 54 , 64 ], and further post-qualification independent working concerns emerged [ 23 , 65 , 66 ], which limited educators’ willingness to support learning. Together, these tensions appear to set learning facilitation for those with dyscalculia within healthcare apart from non-healthcare settings. Therefore, healthcare-specific education research and training is needed to address this, especially given thus far, analogous concerns regarding dyslexia and clinical risk remain unproven.

The influence of educator-reported increasing clinical workload and resource limitations on approach towards supporting DiT with dyscalculia was similarly seen within nursing studies [ 23 , 29 ]. Whilst the impact of clinical demands on UK-based educators are broadly known [ 67 ], greater recognition of the potentially disproportionately negative impact on DiT with dyscalculia needs to be made by those overseeing training delivery.

Uncertainty regarding reasonable adjustments need addressing

Additionally, whilst educators were generally supportive of RAs for DiT with dyscalculia, most intending these to be enabling, caveats to RA introduction were substantial for some. Concerns regarding RA implementation for DiT with dyscalculia were similar to nursing and wider HEI SpLD studies [ 24 , 66 ], but less common or absolute, most relating to feasibility, fairness and adverse impact on educators. These are important to explore if inclusivity in PGME is to be further embraced. Furthermore, and similarly to HEI findings [ 24 ], participant concerns about externally-mandated RAs derived from distant SpLD experts suggest that harnessing coproduction, with greater involvement of clinical educators in RA design, could be important for future endorsement. Additionally, whilst the scale of potential RA suggestions for dyscalculia made in this study is novel, it is important that the experiences of DiT with dyscalculia themselves are captured and used to ensure adjustments are truly enabling.

Therefore, whilst this study reveals important and novel discoveries relating to educators, PGME and dyscalculia, establishing DiT experiences of dyscalculia and PGME is the most crucial avenue of future research to next undertake to better understand and enable both DiT and educators to fulfil their roles effectively and inclusively.

Limitations

As a small, qualitative scoping study undertaken in Wales, study findings cannot and should not be generalisable. Seemingly the first study in this area, transferability should also be considered carefully. Due to purposive sampling, those volunteering may have been more interested in this topic; therefore, findings may not reflect the range of knowledge, attitudes, and experiences of all PGME educators.

Furthermore, use of interviews for data collection and the resultant lack of anonymity may have altered participant contributions. Moreover, despite adopting reflexivity, as a relatively inexperienced, sole researcher, I will have engaged in interviews and analysed data with intrinsic unconscious biases, introducing variability and affecting finding credibility. Despite methodological limitations within this small scoping study, my intention was to construct detailed understanding, providing a basis for future research.

This study reveals, seemingly for the first time, the attitudes, understanding and perceptions of PGME educators relating to DiT with dyscalculia. It highlights that lack of awareness and understanding of dyscalculia exists within the PGME educator community, especially in the absence of relatives with dyscalculia, and that widely accessible, evidence-based approaches to identification, support, teaching approaches and RA provisions are needed and wanted by PGME educators.

The rich stories of participants illuminate the emphasis educators place on experiential learning in informing their perceptions and training approaches, especially in the absence of prospective dyscalculia training or evidence base to draw upon. Given this, including the impact of limited or complete lack of dyscalculia experience and the substitution of generalisation to fill knowledge gaps found in this study, there is a real need for greater PGME-focused research to pre-emptively inform and support all educators.

Furthermore, greater acknowledgement and understanding of the seminal influence that clinical context has on educators, their attitudes towards supporting DiT with dyscalculia and the highly prized bidirectional learning relationships, as revealed in this study, are needed. It highlights the need for greater research to better understand the impact that specific nuances of PGME might have on educators’ support of DiT with dyscalculia and further characterise unmet needs. Future research must begin to address educator uncertainties revealed in this study around potential concerns relating to patient safety and care and differential approaches for dyscalculia and unfairness to other learners to move PGME forward in an effective, inclusive and enabling way.

Notable in this study is the lack of the learner voice, and future research needs to begin to better understand the perceptions and experiences of DiT with dyscalculia of PGME across a wide range of aspects. These could involve those suggested by participants, including DiT PGME learning and assessment experiences, coping strategies, reasonable adjustments and cultural norm impact. Furthermore, clarifying the wider awareness and knowledge levels of PGME educators regarding dyscalculia via more quantitative approaches could help build breadth to the understanding of this poorly understood phenomenon alongside the depth provided by this study.

Data availability

No datasets were generated or analysed during the current study.

Abbreviations

Attention Deficit and Hyperactivity Disorder

Doctors in Training

General Medical Council

Higher Education Institution

Health Education and Improvement Wales

Postgraduate Medical Education

Professional Support Unit

Reasonable Adjustment

Reflexive Thematic Analysis

Specific Learning Difference

United Kingdom

Zone of Proximal Development

Laurillard D, Butterworth B. Review 4: The role of science and technology in improving outcomes for the case of dyscalculia. In: Current Understanding, Support Systems, and Technology-led Interventions for Specific Learning Difficulties: evidence reviews commissioned for work by the Council for Science and Technology. Council for Science and Technology, Government Office for Science; 2020. https://assets.publishing.service.gov.uk/media/5f849afa8fa8f504594d4b84/specific-learning-difficulties-spld-cst-report.pdf . Accessed 24th November 2023.

Parliamentary Office for Science and Technology (POST). Postnote: Dyslexia and dyscalculia. London: Parliamentary Office for Science and Technology. 2014. https://www.parliament.uk/globalassets/documents/post/postpn226.pdf . Accessed 9th October 2023.

Drew S. Dyscalculia in higher education. PhD Thesis, Loughborough University, UK; 2016.

Walker E, Shaw S. Specific learning difficulties in healthcare education: the meaning in the nomenclature. Nurse Educ Pract. 2018;32:97–8.

Article Google Scholar

Shaw S. The impacts of dyslexia and dyspraxia on medical education. PhD Thesis, University of Brighton and the University of Sussex; 2021. p. 16.

Lewis K, Lynn D. Against the odds: insights from a statistician with dyscalculia. Educ Sci. 2017;8:63. https://doi.org/10.3390/educsci8020063 .

Lewis K, Lynn D. An insider’s view of a mathematics learning disability: compensating to gain access to fractions. Investig Math Learn. 2018;10(3):159–72. https://doi.org/10.1080/19477503.2018.1444927 .

Shrewsbury D. State of play: supporting students with specific learning difficulties. Med Teach. 2011;33(3):254–5.

Google Scholar

Murphy M, Dowell J, Smith D. Factors associated with declaration of disability in medical students and junior doctors, and the association of declared disability with academic performance: observational study using data from the UK Medical Education Database, 2002–2018 (UKMED54). BMJ Open. 2022;12:e059179. https://doi.org/10.1136/bmjopen-2021-059179 .

Mogensen L, Hu W. ‘A doctor who really knows...’: a survey of community perspectives on medical students and practitioners with disability. BMC Med Educ. 2019;19:288. doi: 10.1186/s12909-019-1715-7

British Medical Association. Disability in the Medical Profession: Survey Findings 2020. 2021. https://www.bma.org.uk/media/2923/bma-disability-in-the-medical-profession.pdf . Accessed 9th October 2023.

General Medical Council. What is differential attainment? 2021. Available from: https:// www.gmc-uk.org/education/standards-guidance-and-curricula/projects/differential-attainment/what-is-differential-attainment . Accessed 9th October 2023.

General Medial Council. Welcomed and valued: Supporting disabled learners in medical education and training. 2019. https://www.gmc-uk.org/-/media/documents/welcomed-and-valued-2021-english_pdf-86053468.pdf . Accessed 9th October 2023.

Ellis R, Cleland J, Scrimgeour D, Lee A, Brennan P. The impact of disability on performance in a high-stakes postgraduate surgical examination: a retrospective cohort study. J Royal Soc Med. 2022;115(2):58–68.

Equality Act. 2010. c. 15. [Internet.] 2010. https://www.legislation.gov.uk/ukpga/2010/15 . Accessed 9th October 2023.

Asghar Z, et al. Performance of candidates disclosing dyslexia with other candidates in a UK medical licensing examination: cross-sectional study. Postgrad Med J. 2018;94(1110):198–203.

Botan V, Williams N, Law G, Siriwardena A. How is performance at selection to general practice related to performance at the endpoint of GP training? Report to Health Education England. 2022. https://eprints.lincoln.ac.uk/id/eprint/48920/ . Accessed 9th October 2023.

Taylor D, Hamdy H. Adult learning theories: implications for learning and teaching in medical education: AMEE Guide 83. Med Teach. 2013. https://doi.org/10.3109/0142159X.2013.828153 .

Grant J. Learning needs assessment: assessing the need. BMJ. 2002;324:156–9. https://doi.org/10.1136/bmj.324.7330.156 .

Davis N, Davis D, Bloch R. Continuing medical education: AMEE Education Guide 35. Med Teach. 2008;30(7):652–66.

Pit-Ten Cate I, Glock S. Teachers’ implicit attitudes toward students from different Social groups: a Meta-analysis. Front Psychol. 2019. https://doi.org/10.3389/fpsyg.2019.02832 .

Cambridge Dictionary. Meaning of attitude in English. [Internet.] 2022. https://dictionary.cambridge.org/dictionary/english/attitude . Accessed 9th October 2023.

L’Ecuyer K. Perceptions of nurse preceptors of students and new graduates with learning difficulties and their willingness to precept them in clinical practice (part 2). Nurse Educ Pract. 2019;34:210–7. https://doi.org/10.1016/j.nepr.2018.12.004 .

Ryder D, Norwich B. UK higher education lecturers’ perspectives of dyslexia, dyslexic students and related disability provision. J Res Spec Educ Needs. 2019;19:161–72.

Newlands F, Shrewsbury D, Robson J. Foundation doctors and dyslexia: a qualitative study of their experiences and coping strategies. Postgrad Med J. 2015;91(1073):121–6. https://doi.org/10.1136/postgradmedj-2014-132573 .

Shaw S, Anderson J. The experiences of medical students with dyslexia: an interpretive phenomenological study. Dyslexia. 2018;24(3):220–33.

L’Ecuyer K. Clinical education of nursing students with learning difficulties: an integrative review (part 1). Nurse Educ Pract. 2019;234:173–84. https://doi.org/10.1016/j.nepr.2018.11.015 .

Walker E, Shaw S, Reed M, Anderson J. The experiences of foundation doctors with dyspraxia: a phenomenological study. Adv Health Sci Educ Theory Pract. 2021;26(3):959–74.

Evans W. If they can’t tell the difference between duphalac and digoxin you’ve got patient safety issues. Nurse lecturers’ constructions of students’ dyslexic identities in nurse education. Nurse Educ Today. 2014;34(6):41–6. https://doi.org/10.1016/j.nedt.2013.11.004 .

Illing J, Carter M. Chapter 27: philosophical research perspectives and planning your research. In: Swanwick T, Forrest K, O’Brien B, editors. Understanding medical education: evidence, theory and practice. 3rd ed. Oxford: Wiley; 2019. pp. 393–6.

Atkinson K, Koenka A, Sanchez C, Moshontz H, Cooper H. Reporting standards for literature searches and report inclusion criteria: making research syntheses more transparent and easy to replicate. Res Synth Methods. 2015;6(1):87–95.

Cohen L, Manion L, Morrison K. Research methods in education. 8th ed. London: Routledge; 2017. pp. 171–86.

Book Google Scholar

Critical Skills Appraisal Programme (CASP): Qualitative checklist. In: Critical Appraisal Checklist. Critical appraisal skills programme. [Internet]. 2018. https://casp-uk.net/casp-tools-checklists/ . Accessed 9th October 2023.

O’Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med. 2014;89(9):1245–51.

Cohen L, Manion L, Morrison K. Research methods in education. 8th ed. London: Routledge; 2017. pp. 334–5.

DeJonckheere M, Vaughn L. Semistructured interviewing in primary care research: a balance of relationship and rigour. Fam Med Com Health. 2019. https://doi.org/10.1136/fmch-2018-000057 .

O’Hara C. To Teach or Not to Teach? A study of Dyslexia in Teacher Education. Cardiff Metropolitan University, UK;2013 p. 240.

Ryder D. Dyslexia assessment practice within the UK higher education sector: Assessor, lecturer and student perspectives. University of Exeter; 2016.

Schabmann A, Eichert H-C, Schmidt B, Hennes A-K, Ramacher-Faasen N. Knowledge, awareness of problems, and support: university instructors’ perspectives on dyslexia in higher education. Eur J Spec Needs Educ. 2020;35(2):273–82.

Cohen L, Manion L, Morrison K. Research methods in education. 8th ed. London: Routledge; 2017. pp. 507–24.

Cohen L, Manion L, Morrison K. Research methods in education. 8th ed. London: Routledge; 2017. ;523.

Malmqvist J, Hellberg K, Möllås G, Rose R, Shevlin M. Conducting the pilot study: a neglected part of the research process? Methodological findings supporting the importance of piloting in qualitative Research studies. Int J Qual Methods. 2019;18. https://doi.org/10.1177/1609406919878341 .

Miller T, Bell L. Consenting to what? Issues of access, gate-keeping and ‘informed’ consent. In: Mauthner M, Birch M, Jessop J, Miller T, editors. Ethics in qualitative research. London: Sage; 2002. pp. 53–5.

Cohen L, Manion L, Morrison K. Research methods in education. 8th ed. London: Routledge. 2017.;523.

Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.

Braun V, Clarke V. Can I use TA? Should I use TA? Should I not use TA? Comparing reflexive thematic analysis and other pattern-based qualitative analytic approaches. Couns Psychother Res. 2020;21(2):37–47.

Braun V, Clarke V. Thematic analysis. In: Cooper H, Camic P, Long D, Panter A, Rindskopf D, Sher K, editors. APA handbook of research methods in psychology, vol. 2: Research designs: quantitative, qualitative, neuropsychological, and biological. Washington, DC: American Psychological Association; 2012. pp. 57–71.

Chapter Google Scholar

Braun V, Clarke V. Reflecting on reflexive thematic analysis. Qual Res Sport Exerc Health. 2019;11(4):589–97.

Byrne DA. Worked example of Braun and Clarke’s approach to reflexive thematic analysis. Qual Quant. 2021;56:1391–412.

Braun V, Clarke V. One size fits all? What counts as quality practice in (reflexive) thematic analysis? Qual. Res Psychol. 2021;18(3):328–52.

Finlay L. Outing the researcher: the provenance, process, and practice of reflexivity. Qual Health Res. 2002;12(4):531–45. https://doi.org/10.1177/104973202129120052 .

Beer O. There’s a certain slant of light’: the experience of discovery in qualitative interviewing. OTJR. 1997;17(2):127.

Cohen L, Manion L, Morrison K. Research methods in education. 8th ed. London: Routledge; 2017. ;112.

Cameron H, Nunkoosing K. Lecturer perspectives on dyslexia and dyslexic students within one faculty at one university in England. Teach High Educ. 2012;17(3):341–52.

West M, Coia D. Caring for doctors, caring for patients. London:General Medical Council. 2019. https://www.gmc-uk.org/-/media/documents/caring-for-doctors-caring-for-patients_pdf-80706341.pdf . Accessed 8th October 2023.

Kaufman DM. Teaching and learning in Medical Education: how theory can inform practice. In: Swanwick T, Forrest K, O’Brien BC, editors. Understanding Medical Education evidence theory and practice. New Jersey: Wiley Blackwell; 2019. pp. 58–9.

Swanwick T. Postgraduate medical education: the same, but different. Postgrad Med J. 2015;91:179–81.

Farmer M, Riddick B, Sterling C. Dyslexia and inclusion: assessment and support in higher education. London: Whurr; 2002. pp. 175–81.

Mortimore T. Dyslexia in higher education: creating a fully inclusive institution. J Res Spec Educ Needs. 2013;13:38–47. https://doi.org/10.1111/j.1471-3802.2012.01231.x .

Morris C. Chapter 12: Work-based learning. In: Swanwick T, Forrest K, O’Brien B, editors. Understanding medical education: Evidence, theory and practice. 3rd ed. Oxford: Wiley; 2019. p.168.

Sandhu D. Postgraduate medical education – challenges and innovative solutions. Med Teach. 2018;40(6):607–9.

Ricketts C, Brice J, Coombes L. Are multiple choice tests fair to medical students with specific learning disabilities? Adv Health Sci Educ Theory Pract. 2010;15:265–75. https://doi.org/10.1007/s10459-009-9197-8 .

Asghar Z, Williams N, Denney M, Siriwardena A. Performance in candidates declaring versus those not declaring dyslexia in a licensing clinical examination. Med Educ. 2019;53(12):1243–52.

Riddell S, Weedon E. What counts as a reasonable adjustment? Dyslexic students and the concept of fair assessment. Int Stud Sociol Educ. 2006;16(1):57–73. https://doi.org/10.1080/19620210600804301 .

Riddick R, English E. Meeting the standards? Dyslexic students and the selection process for initial teacher training. Eur J Teach Educ. 2006;29(2):203–22. https://doi.org/10.1080/02619760600617383 .

Morris D, Turnbull P. Clinical experiences of students with dyslexia. J Adv Nurs. 2006;54(2):238–47. https://doi.org/10.1111/j.1365-2648.2006.03806.x .

General Medical Council. National Training Survey 2024 results. [Internet]. 2024 p. 4–5, 24–25, 28–32. https://www.gmc-uk.org/-/media/documents/national-training-survey-summary-report-2024_pdf-107834344.pdf . Accessed 26/7/2024.

Download references

Acknowledgements

LJC would like to thank her academic supervisor Ms Helen Pugsley, Centre for Medical Education at Cardiff University, for her guidance and encouragement during LJC’s Masters project. LJC would also like to thank all the interview participants who took an active part in shaping this project. LJC is extremely grateful for their time, honesty and for providing such vivid and illuminating windows into their roles as educators. LJC would also like to thank Dr Colette McNulty, Dr Helen Baker and wider staff members at HEIW for their support in circulating her study invitation to trainers across Wales.

LJC did not receive any funding for, or as part of, the research project described in this paper.

Author information

Authors and affiliations.

Aneurin Bevan University Health Board, Newport, UK

Laura Josephine Cheetham

You can also search for this author in PubMed Google Scholar

Contributions

LJC designed and undertook the entirety of the research project described in this paper. She also wrote this paper in entirety.

Corresponding author

Correspondence to Laura Josephine Cheetham .

Ethics declarations

Ethics approval and consent to participate.

This study received ethical approval from Cardiff University’s Medical Ethics Committee. After discussions, it was felt that NHS Research Ethics Committee approval was not needed. Written and verbally informed consent to participate was obtained, with prospective participants being provided with information regarding the study and their rights at least three weeks before interviews took place.

Consent for publication

Research participants gave written and verbal consent for the contents of their interviews to be analysed and reported as part of this study.

Competing interests

The authors declare no competing interests.

Author’s information

LJC is currently a final year GP registrar working in Wales with keen interests in differential attainment, inclusivity within education and civil learning environments. This paper is borne from a project she designed and undertook as part of her Masters in Medical Education at Cardiff University.

Additional information

Publisher’s note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Electronic supplementary material

Below is the link to the electronic supplementary material.

Supplementary Material 1

Supplementary material 2, supplementary material 3, rights and permissions.

Open Access This article is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License, which permits any non-commercial use, sharing, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if you modified the licensed material. You do not have permission under this licence to share adapted material derived from this article or parts of it. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc-nd/4.0/ .

Reprints and permissions

About this article

Cite this article.

Cheetham, L.J. “Because people don’t know what it is, they don’t really know it exists” : a qualitative study of postgraduate medical educators’ perceptions of dyscalculia. BMC Med Educ 24 , 896 (2024). https://doi.org/10.1186/s12909-024-05912-2

Download citation

Received : 27 November 2023

Accepted : 14 August 2024

Published : 20 August 2024

DOI : https://doi.org/10.1186/s12909-024-05912-2

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

Dyscalculia
Postgraduate
Neurodiversity

BMC Medical Education

ISSN: 1472-6920

General enquiries: [email protected]

An official website of the United States government

The .gov means it’s official. Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

The site is secure. The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Publications
Account settings

Preview improvements coming to the PMC website in October 2024. Learn More or Try it out now .

Advanced Search
Journal List
HHS Author Manuscripts

Longitudinal Qualitative Methods in Health Behavior and Nursing Research: Assumptions, Design, Analysis and Lessons Learned

Emily l. tuthill.

1 Department of Community Health Systems, School of Nursing, University of California San Francisco, CA, USA

Ann E. Maltby

Kira diclemente.

2 Department of Behavioral and Social Sciences, Brown University School of Public Health, Providence, RI, USA

Jennifer A. Pellowski

3 International Health Institute, Brown University School of Public Health, Providence, RI, USA

4 Department of Epidemiology and Biostatistics, University of Cape Town, South Africa

Longitudinal qualitative research (LQR) is an emerging methodology in health behavior and nursing research. Researchers are turning to LQR to understand experiences across time as well as identify facilitators and inhibitors of health/illness behaviors and transitions. Currently, a lack of information exists to guide researchers on LQR techniques and considerations. Our objective was to provide a methodological resource for health behavior and nursing researchers conducting LQR. LQR may be applied to understand any human experience, as well as the sequalae of the experience and is well suited for studying transitions and developmental or behavioral changes. Conducting LQR is resource intensive and requires flexibility and complex analyses. We discuss multiple components of LQR such as design considerations, analysis options, and our lessons learned. Despite complexities, LQR provides the opportunity to understand experiences across time within an individual and among a group resulting in holistic, in-depth understandings beyond a cross-sectional time point.

Introduction

Longitudinal qualitative research (LQR) is an emerging methodology in health behavior and nursing research—fields focused on generating evidence to support nursing practices as well as programs, and policies promoting healthy behaviors ( Glanz et al., 2008 ; Polit & Beck, 2017 ). Because human experiences are rarely comprised of concrete, time-limited events, but evolve and change across time, the use of LQR offers an innovative option to capture this natural history. The advantage of LQR over cross-sectional designs in health behavior and nursing research is that LQR provides a unique understanding of experiences across time, turning points, critical time points in transitions as well as the facilitators or challenges that support or undermine behaviors aligned with health/illness and life course transitions ( SmithBattle et al., 2018 ). In pursuit of understanding the natural history or trajectories of human experiences, LQR generates in-depth data on the social and behavioral aspects of transitions that are less evident through cross-sectional or quantitative data alone. However, the broader nursing and health behavior research literature is deficient in resources offering theoretical, methodological, and analytical guidance on conducting LQR. To fill this gap, we developed a methodological resource to guide planning and decision making in LQR for health behavior and nursing researchers by pulling from our experiences and other disciplines such as education where more literature exists on conducting LQR. Many of the examples presented here are based on our research team’s LQR applied to better understanding the transition from pregnancy to postpartum among women living with HIV in South Africa and Kenya (i.e., K23MH116807 ELT; K01MH112443 JAP). Depending on the goals of the research team, this resource may be used in its entirety or by section.

This resource includes the following sections relevant to conducting LQR:

Philosophical assumptions of LQR
Methods of LQR, including design strategies and data collection.
Analysis of LQR data, including an overview of several analysis options.
Results of LQR, including how to ensure trustworthiness of findings.
Discussion of challenges in LQR.

Examples of Longitudinal Qualitative Research from Health Sciences Disciplines.

Title/Author(s)	Discipline	Setting	Population	Study Objective	Design/Timing	Analysis	Results and Commentary
Acceptability and Utilization of Three Nutritional Supplements during Pregnancy: Findings from a Longitudinal, Mixed-Methods Study in Niger ( )	Public Health, Nutritional sciences and Biobehavioral health	Maradi region, Niger	N = 84 pregnant women, their families and healthcare providers	To examine the factors affecting acceptability and utilization of three different nutritional supplements among a rural population in southern Niger. The longitudinal aspect of this study aimed “to generate an understanding of change in women’s attitudes and experiences with supplement consumption over the course of the pregnancy.”	Two phases over a 6-month period including individual interviews, focus groups, and quantitative spot checks used to calculate supplement adherence. Phase 1: Individual interviews with Pregnant women n = 84, their husbands n = 18; their mothers-in-laws n = 9, and mid-wives n = 3, focus groups were also conducted with pregnant women n = 17 and health assistants n = 9. Household spot checks were also conducted at baseline n = 90. Phase 2 (4–6 months after Phase 1): repeat interviews (n = 39) and focus groups (n = 12) were conducted in late pregnancy or early postpartum and n = 50 spot checks were also conducted.	Mixed methods; “inductive approach” drawing from Grounded Theory; Authors report inductively generating an exhaustive list of codes across participants. Emergent themes were identified, and coded text was added to a thematic matrix stratified by key study variables (including supplement type) “for enhanced pattern identification.” Quantitative data from the “spot checks” (random checks to count how many portions of the supplement the women had on hand compared to how many they had been given) were used to indicate if the women were under-consuming, over-consuming or correctly-consuming the supplements.	The qualitative results consisted of themes found to affect consumption according to supplement type with exemplar quotes. One section of the qualitative results was dedicated to describing 2 changes they observed at the group level between Phase 1 and Phase 2. The integration of Quantitative and qualitative results is not well described. The authors description of the analysis plan lacks clarity on how Time 1 and Time 2 data were analyzed longitudinally to establish the change across time (over the course of the pregnancy).
The qualities of an effective mentor from the student nurse’s perspective: findings from a longitudinal qualitative study ( )	Health and Life Sciences and Nursing Education	Scotland, UK	N = 17 nursing students	This publication presents a subset of findings from a study aimed at discovering the effects of mentorship on nursing students following educational policy reform. In this work, the researchers specifically aim “to capture changes in the students’ perspective of their mentor over time.”	Five “informal” in-depth interviews across 3-years (n = 10); diary entries submitted to the research team after completing each clinical rotation (n = 17)	“The constant comparative method of analysis”; In vivo coding was used to represent events and ideas in the participants own words. Coded data from the transcripts and memos were reduced to categories and then collapsed into five “major categories.” Using these major categories and other supporting literature, a “core category” or “theory” was developed. “The professional socialization of HE Diploma in nursing students.”	The authors present a summary of the participants views on mentorship before and after they worked with mentors in the clinical setting. They also included the participants changing views of the role of the mentor and what constitutes good or poor mentorship. Grounded Theory approach informed the analysis, however the aspect of establishing change using their longitudinal data is unclear. Moreover, it is not clear how the findings they present relate to the analysis they describe as the findings bear no clear connection to the 5 “major categories” or “core category” which they report were the outcomes of their analysis.
Mechanisms and perceived mental health changes after a livelihood intervention for HIV-positive Kenyans: Longitudinal, qualitative findings ( )	Global public health	Migori County, Kenya	N = 54 adults living with HIV experiencing food insecurity and willing to join a patient support group	To explore “participant definitions of mental health, perceived changes in mental health due to the intervention, and mechanisms through which the intervention may have influenced mental health outcomes.”	In-depth interviews were embedded within a livelihood intervention pilot. Change was assessed indirectly by repeating the same questions after 7–9 months, as well as directly by asking about positive or negative changes in emotions. Time 1: n = 45 intervention participants interviewed 3–5 months after enrollment; Time 2: n = 31 of the 45 intervention participants and n = 9 control participants interviewed at 12 months after the start of the intervention	“Inductive-deductive team approach”; A coding framework was developed in advance according to the interview guide. Interviews were coded in large chunks under broad codes. Multiple authors examined all the excerpts under the broad code of “mental health” and applied sub-codes (“fine codes”) using inductive techniques while prioritizing the “views and voices of participants over pre-identified constructs.” Three researchers wrote analytic reports describing the sub-codes including representative quotes and divergent quotes. These reports were then used to generate theoretical constructs related to mental health change.	The authors present perceived mental health changes after participation in the intervention (i.e. reduced anxiety) with exemplar quotes from participants from before and after the intervention. They also describe the perceived mechanisms (related to the intervention) which changed the participants mental health. The mechanisms (i.e. improved food security) are some of the constructs which emerged from the analysis they describe. The description of analysis does not include how Time 1 and Time 2 interviews were handled in the analysis or how trajectories and instances of change were established. The results largely draw on how participants perceived change in Time 2. The authors preface their results with, “All quotes presented here include participant demographics, and .”
Cross-sectional profiling and longitudinal analysis: Research notes on analysis in the longitudinal qualitative study, “Negotiating Transitions to Citizenship” ( )	Social Science	Leicester, United Kingdom	N = 110 young people	The aim of the “Negotiating Transitions to Citizenship project was, “to investigate young people’s understandings and experiences of citizenship, including their sense of citizenship identity, and to consider how and why these changed over time.”	Baseline questionnaire and three interviews occurring at 1-year intervals (Time 1 n = 110; Time 2 n = 74; Time 3 n = 65)	“Cross-sectional profiling and longitudinal analysis”; Each interview was coded using predetermined codes from the first wave interview guide as well as emerging themes. Data on participants’ experiences and views were then summarized using “thematic and content analysis.” Profiles were created to show findings for each issue for each participant where all together the profile showed findings for the whole group. (See in above for more details)	Smith describes adapting interview guides to revisit aspects of participants’ individual narratives while maintaining common themes to ensure uniformity in the data. Smith also recommends progressively narrowing the focus after each round of inquiry, so as not to end up with an unmanageably broad data set making it difficult to examine any one area of change. Results of the LQR are not presented as the intention was to discuss an analysis method developed for a LQ study on citizenship. In the section (see above), we have attempted to clearly explain specific steps which could be used to apply the cross-sectional profiling approach Smith describes.
Trajectories of episodic disability in people aging with HIV: a longitudinal qualitative study. ( )	Rehabilitation Science	Southern Ontario, Canada	N = 24 adults age 50 years, who were diagnosed with HIV more than 6 years prior	“To understand how the episodic nature of HIV and the associated uncertainty shape the disability experience of adults aging with HIV over time.”	Four semi-structured interviews occurring at 5-month intervals (Time 1 n = 24, Time 2 n = 24)	“Longitudinal analyses” guided by Episodic Disability Framework; A codebook was developed using 3 initial interviews and then all first-round interviews were coded. A cross sectional summary profile was then developed for each participant. The Episodic Disability Framework was applied to code subsequent interviews. All transcripts of the three subsequent interviews were then reviewed by investigators who documented the participants progression in the areas identified by the framework. Based on the changes or lack of change documented across the different areas, longitudinal summary profiles were independently developed by two investigators and then merged. The profiles were compared and contrasted across participants and common trajectories of episodic disability were identified.	Authors present 4 main trajectories of living with episodic disability: “decreasing disability over time, increasing disability over time, stable disability over time, and significant fluctuations in disability over time.” The application of a time/ change-oriented theoretical framework helped to orient the research objectives and analysis. The detailed account of how their analysis was carried out is also a strength of this work. Findings from this study were presented in two papers written by the same authorship team and published in the same year. The second paper ( ) reports results only for women in the sample (n = 10) and focuses less on trajectories and more on what exactly contributes to uncertainty in the context of disability for women in their sample. The two papers do not cite one another.
Muslim Women’s Narratives About Bodily Change and Care During Critical Illness: A Qualitative Study ( )	Nursing and Palliative and End of Life Studies	Jordan	N = 16 Jordanian Muslim women who had undergone a minimum of 48 hours in hospital intensive care	The purpose of this work was “To explore experiences of Jordanian Muslim women in relation to bodily change during critical illness.” Where “the focus is specifically on the women’s experiences in relation to their bodies during their critical illness and the changes of these over time.” It is a presentation of findings drawn from a PhD study which “sought to describe Muslim women’s experiences of critical illness in Jordanian ICUs.”	One to three interviews at 3-month intervals (Time 1 n = 16; Time 2 n = 11; Time 3 n = 2)	“Influenced by Riessman’s method of narrative analysis ( )”; All transcripts were translated and back translated from Arabic to English. Notes were made as field notes and reflective diary entries throughout data collection and analysis. The author read and reread transcripts to become familiar with and quality check the data. Detailed reflexive accounts of each interview were then written, these included non-verbal interactions and compared and contrasted the first and follow-up interviews. Reflexive accounts of each interview were then compared and contrasted and a list of codes was developed. All transcripts were coded. Similar codes were then grouped into sub-categories and sub-categories to main categories.	In a 2010 publication, the authors describe the “main categories” that emerged from their analysis related to women’s pain and suffering ( ). They later (2012) published the article referenced here which describes the theme “bodily experiences” presented as three categories: “the dependent body, the social body, and the cultural body” with example case studies. The presentation of change across time is most apparent in the description of “the dependent body” but the case studies show progression of each category between interviews. Although not stated explicitly, the methods read as though the analysis was done after data collection was complete. It is also not clear if anything different was done with the analysis between the two publications. However, they mention “applying the concept of total pain” in 2010 and the concept of “body work” in 2012. These authors demonstrate one way of disseminating extensive LQR findings through multiple publications with specific foci. They are transparent about publishing multiple manuscripts from this data by referring to their 2010 work throughout.

Study Considerations for LQR and Lessons Learned From Conducting Our Own LQR.

Technical Item	Issue Confronted	Lesson Learned/Suggestions
Establishing Timepoints	Before establishing a timeline for the research study, there is a need to understand the timeline and critical events tied to the phenomenon of interest.	• recommend either using prior research, or a theoretical framework to establish the timeline for the LQR. • In our own research on HIV treatment across the pregnancy to postpartum transition, we relied on evidence describing the timeline for postpartum disengagement in HIV care to select our interview timepoints. Knowing when disengagement typically occurs during the postpartum period allowed us to select interview timepoints just before, and after that time. Understanding when infants were first tested for HIV and when the results were disclosed to their mothers was also important to our study’s timeline. • There may also be a need to revise timepoints based on preliminary findings. This requires flexibility and open-mindedness in order to optimize the depth and quality of data.
Eliciting a rich narrative	Not everyone who meets inclusion criteria and consents to participate is truly willing and able to share their experiences with the research team. Some participants may give short or impersonal answers or may not fully understand the questions. For example, when asked how they feel about something they may simply respond, “I don’t know” or “I felt bad” and not elaborate much, even with probing.	• Becoming familiar with the target population, language and culture is a helpful first step, especially when trying to inquire about sensitive subjects or decide on effective interview techniques. Some populations may feel more comfortable sharing in a group setting while others may be more private. For example, we found our participants described certain experiences more freely during a focus group than during one on one interviews. • Consider pre-screening participants with one or two sample questions to assess if they are willing and able to share their thoughts and feelings about the experience of interest. • We suggest preliminary testing of guides and interview techniques when possible. • We found timely debriefings with our team after data collection and subsequently reading transcripts as soon as they were available guided adjustments to our lines of questioning as well as interview techniques.
Sampling Techniques	Participants are selected based on a shared experience. But one’s experience of something is often heavily influenced by one’s personal characteristics. A challenge of LQR is to select a representative sample ensuring various points of view, while still having participants similar enough to allow connections and patterns in the experience to emerge.	• Carefully consider the population of interest and how different characteristics of potential participants might influence their experience of the phenomenon of interest. For example, if the population of interest is postpartum women, the experience of a single mother might vary from that of a woman with a stable partner. A sample with similar characteristics (age, parity, etc.) are more likely to have more similar experiences of change than participants who are very different from each other yet experiencing the “same phenomena.” • A structured purposive sampling method can be used to recruit along key axes of diversity (age, parity, education, relationship status) to facilitate the emergence of change across time and across the sample. • We found utilizing a clinic’s infrastructure and staff to identify and approach potential candidates was helpful.
Retention	It is challenging to retain participants in a study over a longer period of time.	• Regular follow-up phone calls with participants in between interview encounters as well as offering financial incentives has worked very well for us. We also worked closely with a clinic to know when appointment dates were, if participants did or did not show up, if any transfers occurred and to coordinate appointment visits with data collection. • Establishing a strong trusting relationship with the participants also helps with retention. Having the same staff member conduct all interviews and follow-up phone calls between interviews can help build this trusting relationship.
Relationships with research team	Developing trust and rapport. Recognizing when interactions are therapeutic. Study staff require support for emotionally draining work.	• The power of LQR lies in the relationships that build across time between the research team and the participants. This includes a mature respect for participants and their experience and a commitment to honoring their story through the research objectives. We invest in these relationships by thoroughly reviewing all the field notes, and interview transcripts of our participants prior to each encounter. This allows us to reference their prior concerns, feelings and situations as well as convey to them that their unique story matters to us. • These relationships may unintentionally change a participant’s experience. Participants may feel like the interview really helped them, even though it was not designed to be an intervention. It is important to acknowledge the relationship’s impact on the participant’s experience, if any. • In some cases, researchers, or their assistants in the field, may need extra support to process the emotional strain from working with participants who are sharing their personal experiences of suffering and vulnerability. Our interviewers found relief from this strain through team debriefings and discussions especially after difficult/sad interviews.
Guide Development	What to consider when developing guides for in-depth interviews with the target population or key informants and focus group discussions.	• When using a guiding theory, operationalizing the concepts of the theory can help identify key areas of inquiry. • When possible, allow time between data collection points to interpret data as well as revise and seek ethical approval(s) for subsequent guides. • Keep the guides focused on collecting information that will answer the research questions while remaining open to understanding the complexities of the answers. • Tailor later guides to each participant when feasible; use data collected in prior interviews to personalize questions as well as to ask for clarification of or elaboration on previous responses or to inquire about how experiences may have changed since the previous interview. • Alternatively, recommend considering a more consistent interview guide in terms of content and format. They caution that variations in guides can lead to misinterpretations of change. For example, a new question about community support in a follow up interview might stimulate a participant to state new information about the importance of the community support they have received. This could be interpreted as a change in the participant’s support system. However, the community support might have been equally as important during the initial interview when they were not asked about it and thus, did not mention it.
Data Management	Large data sets and fluid procedures make it easy to lose sight of the study objectives or get side tracked with other questions that emerge. Managing a large quantity of data in multiple forms including: transcribing, translating, turning notes into coherent text and organizing is a major challenge. There is also a need to consider cyber security while sharing data online with remotely located research staff.	• Constant discussion with the research team helps to balance openness to unexpected findings and the potential for new inquiry with a focus on the original research questions. • Put systems in place to securely store and manage data within the research team. • With the team’s available resources in mind, set up a detailed timeline of preliminary analysis plans including the potential coding schemas. • We used a software program to house all the raw data and perform coding and a secure server for file sharing with our transcription and translation teams.
Fidelity	Ensuring interviews conducted cross-culturally in several languages are of high quality and answer the study questions.	• Extensive training for qualitative interviewers can ensure their understanding of the research objectives is deep enough to allow the development of meaningful translations of the study’s concepts, and questions which can be clearly understood within the language and/or cultural contexts of the participants. • Post-interview briefings help to identify questions or concepts that pose difficulties due to misunderstandings or challenges with translation. For example, we found our initial translation of “an empowered woman” was not well understood in the Dholuo language during our first interviews. After discussing in-depth with our locally based research assistant, we adjusted our line of questioning and used different words and examples to describe empowerment which were better understood in subsequent interviews. • Timely team evaluations and quality checks of translations throughout data collection are also important.
Ethics	Protecting the privacy of participants can be difficult in LQR, especially in long term projects involving detailed personal data where it would be difficult to have complete anonymity or when data is expected to be used for future secondary analyses.	• Standard methodologies for ensuring confidentiality in cross-sectional research should be applied with LQR including utilizing participant identification numbers rather than participant names, storing documents that contain participants names (such as consent forms or locator information) securely and separately from all other study data, removing names and places from interview transcripts, and never reporting participant names in manuscripts or other dissemination materials. • We found that participants may feel differently across time about their participation or not recall study aims and thus reviewing the consent prior to each session as well as touching base between sessions to keep them engaged is important.
Institutional Review Boards (IRB)	Investigators may need to modify interview guides, add new scales or surveys, collect different demographic data about participants, or even increase the sample size—this can be challenging as ethical review board/IRB processing times and requirements vary across institutions and organizations. Researchers can wait from a few days to several months for approval of even minor changes, depending on geographic location and/or multiple research sites.	• Thinking ahead as best as the team can—and prepare for anticipated changes whenever possible. It is also important to have a good understanding of how the IRB you are working with operates (i.e. when they meet, how to communicate with them and typical processing times). • We have found it helpful to reiterate multiple times in the initial IRB application that our study was iterative with changes to interview guides dependent on data collected in ongoing interviews. Thus, in the initial IRB application we only sought approval for our first interview guide and indicated that we would seek IRB amendments prior to each subsequent interview. Depending upon researchers’ experiences with their own IRBs this may be an acceptable approach, or IRBs may require interview guides for all time points during the initial application review process.
Dissemination	Deciding at what point to share your findings and whether or not to publish baseline data.	• There may be very rich findings in the baseline data, but the risk of publishing it may jeopardize the power of the longitudinal results. The benefit of publishing baseline data as exploratory research is to encourage rigorous analysis of the initial status of participants’ lives before analyzing for change ( ; ).

Potential Theoretical Framework for LQR and its Application

Transition theory (tt).

( Chick & Meleis, 1986 ; Meleis et al., 2000 ) is a well-suited model to describe health behaviors that occur across time and across a transition, such as diet and physical activity across the transition from pregnancy to postpartum or drinking behaviors across the transition from adolescence to early adulthood. TT allows researchers to characterize and describe transitions, such as those described above, and define the relevant personal, community, and societal characteristics that may facilitate and inhibit health behaviors necessary for a successful transition.

Application:

In our recent study of HIV treatment adherence among pregnant and postpartum women we utilized Transitions Theory (TT) to examine maternal motivations, behaviors, and social contexts from the 8th month of pregnancy up to a year postpartum in Cape Town, South Africa ( Pellowski et al., 2019 ). During the design process, TT was chosen as an overarching theoretical framework for the study and influenced the sample of interest (recruiting women during pregnancy as opposed to only focusing on the postpartum period). TT also guided the main sections of each interview agenda with a focus on the concepts that the theory posits to be the most influential on health behaviors across this transition (e.g. personal meanings, cultural beliefs and attitudes, socioeconomic status, preparation and knowledge, partners, families, and community stigma). Additionally, the four interview time points were carefully selected to align with what TT describes as critical points and events: 1) late pregnancy was chosen to capture preparations for the transition, 2) 6–8 weeks postpartum was chosen to capture reflections on birth and initial impacts of the newborn on daily life, 3) 4–6 months postpartum was chosen to capture early infant HIV testing, the end of exclusive breastfeeding/introduction of other foods, and maternal transfer of HIV care services, and 4) 9–12 months postpartum was chosen to capture possible disengagement from HIV care and the end of the breastfeeding period for many women in this context. Finally, TT was used to guide the analysis, which utilized an inductive approach. It is of note that the application of theory to an LQR project does not restrict the types of analyses that can be utilized (e.g. inductive vs deductive approaches). In this example, TT was used as a guiding framework to ensure that all phenomena relevant to the transition from pregnancy to postpartum for women living with HIV were captured in data collection. During data analysis, the main objective was not to support or refine the theory (deductive approach), but rather to understand and make generalizations about the unique experiences of women with the constructs defined by TT serving as general reference points ( Pellowski et al., 2019 ).

An Application of the Serial Interview Approach from NIH K23MH116807

A sample of 30 perinatal women were interviewed during their 3rd trimester of pregnancy. They were asked about their breastfeeding intentions, expectations and past experiences with breastfeeding. Based on the findings from the initial interview the women were interviewed again at 6 weeks postpartum. The 6-week interview focused on how the reality of breastfeeding compared to the intentions and expectations the women had prior to giving birth, while looking for newly identified inhibitors and facilitators of breastfeeding behavior. Based on these findings, the researchers tailored a third interview guide to be used when the women reached 5–6 months postpartum to inquire how breastfeeding behaviors evolved as infants grew while exploring new contexts, such as mothers returning to the workplace.

What Makes Longitudinal Qualitative Research a Distinct Methodology?

We have already introduced LQR as an emerging methodology. However, depending on one’s understanding of what a research methodology entails, LQR may appear to be something too broad or flexible to be considered a distinct methodology in and of itself ( McCoy, 2017 ). This seems especially true when LQR is held up against long established qualitative methodologies (with more prescriptive methods) such as Grounded Theory ( Glaser & Strauss, 1967 ; Glaser, 1978 ), Ethnography ( Pelto, 2013 ) or Phenomenology ( Colaizzi, 1978 ). Further confusion surrounding LQR’s classification as a methodology may stem from the substantial overlap of qualitative techniques and procedures between methodologies ( Hermanowicz, 2013 ). Indeed, many LQR studies include the use of data collection techniques or analysis procedures commonly used in other qualitative methodologies.

We propose, however, that LQR exhibits all of the defining characteristics of a unique qualitative methodology ( Carter & Little, 2007 ), including distinct research objectives, foundational assumptions, and well-developed explanations of the methodological and analytic principles as outlined in the following sections. Central to qualitative research, while some procedures or techniques may overlap between methodologies, the research objectives, assumptions, and principles of the chosen methodology should justify the procedures/techniques used ( Carter & Little, 2007 ). For example, LQR may not simply apply a Grounded Theory analysis plan because Grounded Theory analysis procedures do not account for change across time (a primary objective of LQR). However, an inductive thematic analysis (as is applied in Grounded Theory) might be used in LQR to cross-sectionally analyze baseline data in order to identify emergent themes from the initial research encounter. Similarly, LQR studies may employ ethnographic data collection techniques such as observing behaviors across time. However, while ethnographic studies aim to understand a cultural phenomenon or behavior from the viewpoint of participants ( De Chesnay & Abrums, 2015 ) LQR aims to establish a shared understanding of how and why the phenomenon or behavior changes across time. Thus, the management and analysis of data in LQR is inherently different from other methodologies.

What are the Unique Objectives of Longitudinal Qualitative Research?

LQR’s distinction is in its aim to understand an experience or behavior(s) across time; explicitly seeking to answer, “how did this change?” “how is this different?” “why did this change?” and/or “what remains the same?” ( Saldaña, 2003 ). LQR designs have been applied in a variety of research areas including, transitions in human development ( Schmidt et al., 2019 ), the experiences of incarceration ( Cooper et al., 2015 ), aging ( Oosterveld-Vlug et al., 2013 ) and the progression of chronic illness ( Namukwaya et al., 2017 ), as well as behavioral research investigating medication adherence ( Salter et al., 2014 ; Weiser et al., 2017 ) and breastfeeding ( Doherty et al., 2006 ; Jardine et al., 2017 ). LQR may be applied to understand any human experience, as well as its sequalae and is particularly well suited for studying transition periods and developmental or behavioral changes across time. LQR may also be applied to inform the development of health behavior theories or interventions and may be used to understand if a policy or program was effective, why or why not and in what contexts might similar results be expected ( Lewis, 2007 ; see Table 1 for selected examples of study objectives).

Philosophical Assumptions of Longitudinal Qualitative Research

Although the origins of LQR are not strictly defined, there are several assumptions that comprise the philosophical underpinnings of the methodology. First, LQR is based on the assumption that two key concepts— time and change are contextual ( Saldaña, 2003 ). While LQR often occurs over months to years, it is not only the chronological passing of time that creates meaning, but rather how the individual experiences that passage of time ( Saldaña, 2003 ). Different points in a person’s life may make the experience of time qualitatively different from another—passing quickly when one is busy or having fun and slowly when one sits quietly. In addition to personal level variation in the experience of time, the cultural context may also influence the interpretation of time. For example, the acceptable age for marriage or first-time parenthood can vary greatly across cultures, which may impose different time-based milestones or experiences in one’s life.

Since time and our human experiences within it are both contextual, the change we experience across time is also contextual ( Saldaña, 2003 ). Change may not be a linear or ordered journey from one state to another with a definitive end point. Thus, the depth of transitions may not be captured when change is viewed in isolation either as a single unit of analysis or as a solitary episode. LQR assumes the need to explore the complex, haphazard and potentially contradictory ways change emerges and to conceptualize the pathways in which these complexities in experiences and behaviors exist across time ( Pettigrew, 1990 ). Overall, LQR assumes change is multi-faceted and holistic where continuity, patterns, idiosyncrasies, and contexts are key components ( Pettigrew, 1990 ).

The second assumption in LQR centers on the human experience being a construct of the participants’ personal reflections and the researchers understanding of them, allowing multiple realities to exist simultaneously ( Balmer & Richards, 2017 ; McCoy, 2017 ). Furthermore, the construction of these experiences relies on the notion that participants are willing and able to articulate their experiences in a way that can be understood by the researcher ( Baillie et al., 2000 ). In qualitative research, and LQR in particular, participants share their experiences and researchers listen, analyze, and interpret these experiences. Researchers may present their findings back to the participant for their evaluation or ask the participants about the same experience again at a later timepoint to evaluate how their experience or their feelings about it may have changed. Through this process, the essence of the experience across time is established for each participant ( Balmer & Richards, 2017 ; McCoy, 2017 ).

Methods of Longitudinal Qualitative Research

There are no gold standards or fixed rules for data collection in LQR. In general, LQR applies either prospective or retrospective designs that include two or more data collection sessions using qualitative techniques (e.g., interviews, observations, multi-qualitative methods) over a specified time frame ( Saldaña, 2003 ). Yet, the defining principles of data collection in LQR go beyond having data collected at multiple time points. The chosen data collection techniques in LQR must also ensure the quality of data collected as well as cater to the researchers’ abilities to systematically manage and thoughtfully analyze these data across time ( Smith, 2003 ). The researcher’s ongoing assessment of data coupled with the flexibility to make adjustments are hallmarks of LQR methods.

General Design Strategies

Designing LQR studies that effectively capture change is not straightforward. Two overarching complexities are, 1) the length of time needed to be considered longitudinal is not definitive and 2) a universally accepted definition of change does not exist, making it challenging to identify change processes or outcomes across time a priori ( Pettigrew, 1990 ). These complexities are key, however, for researchers to work through as they consider the change they are seeking to understand and the corresponding outcomes. Some design strategies to consider include theoretical frameworks, target population and size, setting and personnel (see Table 1 for selected examples of LQR designs, see Table 2 for additional design considerations and personal lessons learned).

Theoretical framework.

A theoretical framework is chosen based on the research objectives (See Box 1 for an example of a theoretical framework and its application in LQR). Theoretical frameworks are particularly helpful in identifying concepts relevant to the phenomenon of interest and how these concepts may change across time to influence behavior ( Chinn & Kramer, 2011 ). A theoretical framework should be chosen at the outset of project planning and inform 1) sample(s) of interest, 2) content of data collection (e.g. questions/probes developed for in-depth interviews), 3) timing of data collection and, 4) plans for data analysis. Researchers can then operationalize and explore concepts from the framework by asking: How could we define and measure these concepts in the context we are interested in? What information would help us describe and understand these concepts across time? In addition, researchers must remain open to new concepts and pathways that emerge from their data.

Identifying the target population and sample size.

Participants in longitudinal studies are selected based on their shared experience of the phenomenon of interest ( Saldaña, 2003 ). Yet, an individual’s experience is distinct and close observers (friends, family, or caregivers of the individual) can also lend valuable insight ( Johansen et al., 2013 ). Moreover, LQR does not limit the unit of analysis to individual participants. Data might also be collected from focus groups, families, or groups of co-workers ( Johansen et al., 2013 ; see Table 1 for other examples). Thus, researchers must carefully consider who to collect their data from and how many units of analysis (individuals, focus groups, families, etc.) are needed to adequately address the research aims ( Kneck & Audulv, 2019 ). In LQR, in particular, researchers must also anticipate a certain level of attrition because over time participants may migrate, die, or simply lose interest in participating in the study ( Calman et al., 2013 ; Kneck & Audulv, 2019 ). One approach researchers may use to determine sample size is estimating the number of cases needed to reach saturation ( Hennink et al., 2017 ), which for a phenomenology design is typically 10–12 participants ( Polit & Beck, 2017 ). Saldaña (2003) recommends LQR studies start with more participants than you anticipate needing to ensure data saturation is reached, especially if a study takes place over two or more years. Because the context, study design, population, and setting are study specific, determining a certain number or percent to overestimate on sample size is best left to the research team’s judgment, which is based on the stability of their target population. In a systematic review of LQR in nursing, attrition was either a major limitation (20% of studies estimated 50% attrition) or a major strength (30% of studies had 0% attrition; SmithBattle et al., 2018 ). Given these extremes, during the planning phases of the research, attention should be given to understanding sample characteristics including potential barriers to long term participation.

A number of considerations are helpful when determining study setting in LQR. First, the venue must be convenient for the participants over the study period such as one close to the participants’ home or a venue the participants frequent such as their health clinic. Second, if the research team is conducting their study within a clinic or hospital where participants are patients, gaining the support of the clinicians and administrators prior to the start of the study and maintaining strong relationships throughout the study period is key to a collaborative, lasting partnership. Support from stakeholders ensures the desired space is reserved, the study does not disrupt the patient flow, and that the research encounters can be coordinated with participants’ regularly scheduled appointments. Third, the study team needs a private, quiet and secure location where participants will be able to focus on the interview questions while feeling relaxed and comfortable enough to fully express thoughts and experiences. This will also mitigate interruptions and background noise which may distract the participant and detract from capturing clear audio recordings. Fourth, supplying refreshments, child care, and easy access to restrooms may lead to a better experience for participants. Finally, if the researcher chooses to collect data in the homes of participants, the added value of observing participants in their own environment must be weighed against the challenges of working in a less controlled setting (more distractions, interference from other people in the home, potential safety concerns for the researcher, etc.) as well as privacy concerns (particularly when discussing stigmatized diseases or behaviors). Whatever venue is chosen, to the extent that it is feasible, maintaining the same venue throughout the duration of the LQR provides important design consistency and familiarity for participants, which may help retention. Some of these items may be relevant for cross-sectional studies as well, however, we have found that accounting for the aforementioned considerations are of paramount importance in LQR as they nurture long-term participation.

LQR is labor intensive as collecting, organizing and analyzing data is time consuming. Researchers should plan ahead, mapping out the time required for each phase, strategically selecting who will carry out each task and which tasks are best executed collaboratively. Many different skills may be required including, interviewing, conducting focus groups, videography, transcribing audio, translating transcribed text, organizing and managing data and finally conducting the analysis. In addition, there are other demands on staff time including, 1) reviewing and quality checking initial data, 2) revising subsequent interview protocols and guides and 3) maintaining contact with participants between study sessions. The research team should consider the different skills each staff member brings to optimize effectiveness of the study procedures. For example, team members with knowledge of the local language and culture who conduct interviews may also provide invaluable insight into the interpretation of data and its meaning beyond the strictly literal translations of the interviews. Additionally, planning for the same study team member(s) to interact with participants at each data collection point optimizes rapport and trust and aids in retention efforts—particularly when the LQR is occurring over long periods of time (months and years; Nevedal et al., 2018 ). Managing the ebb and flow of workloads across data collection time points requires the thoughtful organization and adaptability of project coordinators in collaboration with principal investigators.

Steps for Data Collection

Step one: operationalize concepts, including time and change..

Conceptually, the notion of time may be different between participants or from the research team’s design expectations. To alleviate this potential disharmony, Pettigrew (1990) suggests that the research team clearly operationalize the concepts of time and change at the outset of the study (as discussed in the “ Philosophical Assumptions of Longitudinal Qualitative Research ” section above). In some cases, the “baseline” (starting point) from which the change/transition of interest begins may not fall within the first interview. For example, when looking at the experience of living with HIV, the baseline might be when the person was first diagnosed with HIV (i.e., years prior) or rather the first time they engaged in treatment sometime after their diagnosis. Change may also be absent across time, which may reflect positive or negative behaviors (maintaining medication compliance vs. maintaining unhealthy habits; Lewis, 2007 ; Saldaña, 2003 ).

Step two: Type of data to be collected.

LQR data may originate from interviews with members of the target population, or with key informants such as family, friends, clinicians or other stake-holders. Data may also come from short answer surveys, focus group discussions or direct observations ( Johansen et al., 2013 ). Initially, data may be in the form of audio recordings, videos, pictures, drawings or field notes. In some cases, LQR studies are embedded in randomized control trials or mixed-methods studies where various types of data were collected. For example, a study on depression might use an established screening tool to assess depression scores at each encounter prior to conducting in-depth interviews with participants. There are no restrictions or limitations to type or quantity of data collected, only the a priori considerations of the desired contribution from each data source, data management and data analysis plan.

Step three: Study approach.

There are several approaches to consider in longitudinal qualitative inquiry. The primary approach used in LQR is serial interviews ( Calman et al., 2013 ; Murray et al., 2009 ). This approach utilizes emergent issues or themes from one interview to inform the line of inquiry used in subsequent interviews. The time between data collection points allows the research team an opportunity to review the data and modify interview guides ( Smith, 2003 ). Subsequent interviews can then be designed to build on rather than duplicate the previously collected data. Importantly, process notes/interview summaries and frequent debriefing of interviews is key to ensuring subsequent interviews are on target (See Box 2 for an example of a study on breastfeeding behaviors using the serial interviews approach).

Step four: Triangulation of data.

This step is meant to validate preliminary findings and ensure data completeness and trustworthiness. There are several ways to triangulate data. For example, findings from interviews with key informants, or focus group discussions can be compared to findings from in-depth interviews with individuals to compare completeness and consistency in findings. Another option is to conduct a final exit interview with each participant ( Saldaña, 2003 ). The purpose of a final exit interview is to present the researcher’s findings to the participant for feedback. Questions may be asked to confirm or disconfirm preliminary assertions, themes or trends. Participants may also be asked to reconstruct their experience within the study timeframe. Similarly, questions could be focused on areas of uncertainty or missing details revealed by the analysis and interpretation. These final insights can assist the research team in confirming their description of change across time using a collaborative, reflective and flexible approach ( Pettigrew, 1990 ).

Analysis of Longitudinal Qualitative Research Data

Longitudinal qualitative data analyses attempt to transform data into explanations and insights which address the original research objective—understanding an experience or behavior across time. Analysis in LQR is challenging on many levels given the large amounts of data to analyze ( Lewis, 2007 ; Pope et al., 2000 ; Smith, 2003 ), the multiple types of data such as field notes, interview summaries, surveys, transcripts or even videos ( Miles et al., 2014 ) as well as the challenge of describing how the experience may change across time within participant and among a group.

The research team is tasked with managing data collection, revision/development of subsequent interview guides and possibly even initiating data analysis while data collection is still ongoing ( McLeod & Thoon, 2009 ; Pope et al., 2000 ). This is especially challenging because carefully transcribing (and when necessary translating) data is time consuming and it is not always feasible to allow ample time in between data collection time points for analysis to be completed ( McLeod & Thoon, 2009 ). Some studies are chronologically time sensitive such as those seeking to understand distinct developmental time periods that would not be captured if data collection were postponed to a later date—early parenthood for example. In these cases, detailed process notes or summaries of individual interviews and frequent debriefings with study staff may be crucial for informing subsequent rounds of data collection. Bearing in mind the aforementioned challenges, what follows are the central analytic principles and procedures for LQR analyses (see Table 1 for selected examples of LQR analyses).

Step 1: Consider the Analysis Approach

The analysis of LQR data can be carried out using a variety of different approaches with the precise methods used often evolving alongside the data collection ( Saldaña, 2003 ). Applying a deductive and/or inductive lens is often a good starting place. Using a deductive approach, researchers begin with a theory or framework in mind and analyze their data to identify specific findings that lend support to, clarify, or refine the theory/framework ( Burnard et al., 2008 ). If applying an inductive approach, researchers start from their original observations and seek to find patterns or make generalizations about their data eventually using their findings to create a theory or framework, establish pathways, or to develop themes or categories related to the phenomenon of interest ( Burnard et al., 2008 ). Researchers can also fall somewhere in between relying on predetermined codes or a framework to organize their data while still trying to identify new patterns or generalizations emerging from the data (see Box 1 for an example of this).

Researchers should also consider if their research objectives are best suited to a diachronic or synchronic analysis approach. Synchronic analysis implies analysis is simultaneous (synchronized) with data collection or occurring as a cross-sectional analysis after each wave of data collection ( Nevedal et al., 2018 ). Synchronic analyses are common in LQR because data collection and analysis are often a fluid process where initial and ongoing analyses are imperative to inform subsequent data collection encounters ( Balmer & Richards, 2017 ; Calman et al., 2013 ; Pope et al., 2000 ). Researchers must stop and ask, “what do we know so far?” “what have we missed?” and “what do we need to know more about to fully understand this experience?” The next round of inquiry is then directed accordingly ( Pope et al., 2000 ). As mentioned, in some instances, synchronic analysis may be less feasible due to time constraints or less important for achieving the study objectives. In these cases, researchers may opt for a diachronic approach, meaning they wait to conduct their analysis until after all data has been collected. Of note, researchers may also choose to conduct both synchronic analysis (cross sectional, after each research encounter) and diachronic analysis (longitudinal, using all data once data collection is complete).

Step 2: Setting Up an Analytic Roadmap

Regardless of the chosen approach, an analytic roadmap outlining the specific steps of analysis is critical to providing direction given the complexity of LQR data. As the study progresses, the initial roadmap may change, and when this happens documenting how the path taken differs from the original plan is needed. A clear and auditable “trail of decisions” ( Guba & Lincoln, 1981 , as cited in Sandelowski, 1986 , p. 33) can establish the dependability of results in qualitative research. Thus, recording when and how decisions about conducting the analysis were made is important for the research team’s reference as well as future reporting of results (see Trustworthiness of Longitudinal Qualitative Research below). The roadmap documentation should include: detailed explanations of what was done, when, and why as well as what did and did not lead to meaningful findings.

Step 3: Familiarization and Coding

After converting raw data (audio recordings, field notes, etc.) into coherent text, the next step of most analytic roadmaps is to read and reread transcripts to become familiar with the content, start identifying potential themes, and assess data quality and effectiveness of the interview guide. For some researchers, highlighting excerpts and adding comments or descriptive memos is also useful during this time, whether by hand or with qualitative data analysis software. Discussing initial data and data quality within the research team is also a part of this process. This is especially important in research teams where different members conducted the interviews and others are leading the analysis. Constructive feedback from the team can provide direction and suggestions for the interviewer in the next round of data collection while the interviewer can offer insight about the interactions with the participants (such as their tone or body language) that may not be fully evident to team members reading the transcripts.

After team discussions on data quality, the next step is often applying codes to the text. This could be a predetermined list of codes or one that emerges from the text. There are many different types of coding schemas such as descriptive coding, versus coding, or in vivo codes that one can apply to suit their analysis (for a comprehensive review on types and procedures for coding see Saldaña, 2009 ). In addition, one can apply the long table or manual approach to code data or use a qualitative data analysis software ( Polit & Beck, 2017 ). Regardless of the type(s) of codes or method by which the coding is done, the objective is to inductively and/or deductively apply codes (labels) to segments of data for the purpose of grouping and organizing thematic segments as well as highlighting exemplar excerpts.

In LQR, there may be one or more members of the research team coding data. Having multiple members of the team coding has several advantages. First, this allows for the inter-rater reliability or the degree of agreement between coders to be assessed. Higher inter-rater reliability shows that codes were applied consistently and supports the rigor and trustworthiness of the study (see trustworthiness of LQR below; Tracy, 2010 ). Moreover, when more than one team member is coding there is opportunity to discuss discrepancies in the application of codes. This guides the team in developing codes with more complete and articulate definitions as well as develops a deeper common understanding of the meaning of each code ( Miles et al., 2014 ). In addition, when various team members code transcripts inductively (without a predetermined code list) multiple perspectives may emerge and be useful, both in terms of capturing all of the possible emerging codes and also in terms of distinguishing between an individual coder’s interpretation of the text and the participants intended meaning ( Pope et al., 2000 ). Conversely, some researchers prefer to have one member do all the coding. An advantage of this approach is that one person can be fully immersed in all the data which may optimize consistency in the analysis. It may also be a pragmatic decision; for example, when an ethnographer embedded in their field site conducts all the data collection and proceeds to do the analysis, this may result in a consistent, comprehensive and thoughtful telling of an experience ( Saldaña, 2003 ).

Step 4: Describing Cross-sectional Data

Analysis of coded data in LQR frequently begins as a cross sectional analysis of the first round of data collected and can include repeated cross-sectional analyses as the researchers work to understand the experience at each timepoint of data collection ( Nevedal et al., 2018 ). Cross-sectional analyses are often conducted using techniques borrowed from other methodologies such as thematic analyses, where coded data are grouped into common sub-themes, sub-themes are grouped into themes and themes into broad categories. Importantly, a meaningful analysis must subsequently attempt to develop a longitudinal (across time) description of the themes or experiences ( Nevedal et al., 2018 ). As the analysis moves from cross sectional to longitudinal it evolves from descriptive (i.e., describing the changes observed) to exploratory (i.e., uncovering the causes and consequences of change or lack of change across time) ( Kneck & Audulv, 2019 ; Lewis, 2007 ).

Step 5: Exploring Longitudinal Data

The final analytical leap from descriptive cross-sectional to exploratory longitudinal is often poorly described in LQR ( Calman et al., 2013 ; Nevedal et al., 2018 ). This is likely because, until recently, neither prescribed nor clearly explained analysis plans for longitudinal data have been documented ( Sheard & Marsh, 2019 ). Within the LQR methodology, researchers are developing variant and sometimes discipline specific analysis techniques consistent with the objectives, assumptions, and principles of LQR ( Carter & Little, 2007 ; Sheard & Marsh, 2019 ). Such analysis plans primarily aim to find patterns of change across time and include: Longitudinal Interpretive Phenomenological Analysis (see McCoy, 2017 ), the Pen and Portrait Technique (see Sheard & Marsh, 2019 ), and the Trajectory Approach (see Grossoehme & Lipstein, 2016 ), which are described in detail elsewhere. In addition, there are the following approaches we describe in detail below:

Longitudinal analysis approaches

Framework analysis ( lewis, 2007 )..

Framework analysis organizes data into one table for each participant (or other unit of analysis) which can then be used to find patterns across participants, across time, and across various identified themes. Patterns might be similar behavioral changes, similar feelings about an experience, or related changes in themes across time. For example, a change in a participant’s understanding of their own health condition may be closely linked to the services they are inclined to access ( Lewis, 2007 ). The rows of the table (sometimes referred to as a framework or matrix) are labeled as the participant encounters (one row for each encounter) while the columns of the tables are topics or themes identified from the theoretical framework, the interview guide, or the initial readings, coding and/or thematic analysis of data (see Table 3 ). Additional columns can be left open for emerging themes ( Lewis, 2007 ). The table is filled in with summaries from each participant in each cell as applicable. Kneck and Audulv (2019) suggest using descriptive summaries during this phase so as not to make any “analytic leaps” too early in the analysis. This process helps remedy the challenge that arises should there be a misinterpretation of data early on in the analysis process upon which future analyses are then based—making it challenging to look back and identify where the misinterpretation occurred. The cells of the table may also include salient words or phrases cut and pasted directly from the transcripts. Reading down the columns the researcher can explore the themes across time, while reading along the rows of the tables the researchers can explore the linkages between themes at a given timepoint. Researchers may also “zig-zag” through the tables to identify other patterns or trends ( Lewis, 2007 ). As these fully populated descriptive tables are explored and analyzed, the researchers can create a second “analysis matrix” where each row represents one unit of analysis and the columns continue to represent the topics/issues/themes of interest. The analysis matrix is then populated with the researcher’s interpretations of how each theme changed (if at all) across time, for each unit of analysis (individual, focus group, family, etc.; Grossoehme & Lipstein, 2016 ).

Example Table for Framework Analysis—Phase 1 and Phase 2.

Phase 1 (One table for each participant)

	Theme 1	Theme 2	Theme 3	Emerging theme	Summary
Baseline					What is happening with the participant at this timepoint? What requires follow up?
Time 2
Time 3
Time 4
Phase 2 (Combining participant findings across time by theme into one table)

	Theme 1	Theme 2	Theme 3	Emerging theme	Summary

Participant #1	Description of theme’s change across time for the participant.				Overall change across time for the participant.
Participant #2
Participant #3
Participant #4
Summary	Trends in the theme’s change across time for the group.

Cross-sectional Profiling ( Smith, 2003 ).

Cross-sectional profiling develops descriptive summaries of each theme, issue, or topic identified for each participant whereby the participant’s thematic profile is developed further with every encounter ( Smith, 2003 ). The summaries might also be arranged as tables with a separate table for each theme, each row representing a participant with a column for each encounter (see Table 4 ). A profile contains a summary of the researcher’s findings related to a specific theme for each participant for each encounter. Within each table, the individual participants (the rows of the table) may be organized in groups according to demographic characteristics, intervention vs. control, or outcomes. Initially, the first column(s) of the profile table (the participants experience of the theme at the first research encounter) guides further inquiry. For example, Smith (2003) identified ineffective lines of questioning related to one of their interview topics in a first wave of profiling and subsequently adjusted their approach. Once the profile is complete (contains summarized data from each participant at each time point), the researcher establishes the overall narrative of change for each theme for the entire group as well as the sub-groups. Then the individual narratives of change can be viewed relative to the narrative of the entire group or subgroup to which the participant belonged ( Smith, 2003 ). In this way the researcher can understand patterns and facilitating or inhibiting factors for individual change as well as develop individual case studies of change within a particular theme. The case studies can then be explored in terms of theme’s findings for the whole group—is it an exemplar or deviant case, or is the change more or less significant than among other participants ( Smith, 2003 )?

Example Tables for Cross Sectional Profiling.

Theme 1	Time 1	Time 2	Time 3	Participant Summary	Group Summary
Group 1 (Single Mothers)

Participant #1	Participant#1’s experience related to Theme 1.	Continuation of Participant#1’s experience related to Theme 1, building on Time 1.	Continuation of Participant#1’s experience related to Theme 1, building on Time 2.	Summary of Participant#1’s experience of Theme 1 across time.	Theme#1 as experienced by Single Mothers across time.

Participant #5
Participant #8

Group 2 (Mothers with a supportive partner)

Participant #2
Participant #3
Participant #6

Group 3 (Mothers with an unsupportive partner)

Participant #4
Participant #7
Participant #9

Case Histories ( Thomson, 2007 ).

This type of analysis uses archives of data to construct accounts of change and continuity across time including the researchers understanding of why things happened the way they did ( Thomson, 2007 ). Researchers use multiple data sources (interview transcripts, field notes, diaries, or notes from focus groups) and synthesize large amounts of information to develop a storyline for each case (individual or group) narrating change or continuity across time (see Table 5 ; Thomson, 2007 ). Case histories go beyond the descriptive level as researchers form a more analytic narrative of the case throughout ( Henderson et al., 2012 ). Sheard and Marsh (2019) describe a similar technique which they refer to as the “pen and portrait analytic technique.” They recommend researchers focus the summaries on the information that is pertinent to the research questions—perhaps centering them around an important theme identified by the researchers. In this way the narratives help to focus the analysis rather than simply serving as an all-encompassing summary. Researchers then use the case histories or narratives to analyze trends. They can group individual case histories by demographics, intervention vs. control or outcomes looking for similarities and differences between the groups as well as exceptional cases within groups. Thomson (2007) describes putting individual case histories “in conversation with each other.” She tried to understand the differences and similarities from different perspectives such as the perspective of the individual versus the perspective of society. Using individual case histories, researchers may also seek to explain why two seemingly different cases have similar outcomes or why two similar cases have different outcomes ( Lewis, 2007 ).

Example Table for Case Histories.

	Time 1	Time 2
Participant #1	Participants narrative together with the researcher’s insights.	Continuation of the narrative with the researcher’s explanation of change including how and why it may have occurred.
Participant #2
Participant #3

Pattern-Oriented Longitudinal Analysis ( Kneck & Audulv, 2019 ).

The Pattern Oriented Longitudinal Analysis (POLA) approach is meant to be applied in nursing research when there is a single phenomenon in focus for the duration of the study and where questions and interview formats are generally consistent at each data collection point ( Kneck & Audulv, 2019 ). POLA focuses initially on describing each individual participant’s change across time and later looks for patterns of change shared among participants. The shared patterns are developed inductively rather than grouping participants into predetermined categories or outcomes ( Kneck & Audulv, 2019 ). Researchers must think critically to define a shared pattern as well as to assess the sufficiency of data which supports the defining aspects of the pattern and its boundaries (the limits outside which cases no longer fit the pattern). The POLA approach also uses matrices to organize data often with a specific analytic question in mind. For example, “how did the participants thoughts about their disease change across time?” The matrices evolve along with the analysis from organizing individual data to organizing group data. Shared patterns may eventually be categorized into types of patterns such as “a consistent pattern,” “an episodic pattern,” “an on-demand pattern” or “a translation pattern” ( Kneck & Audulv, 2019 ).

Collaboration During Analysis

In some cases, a researcher may carry out their LQR analysis independently. However, it is often necessary, and arguably advisable that researchers work collaboratively within a team to design and execute their LQR data analysis ( Calman et al., 2013 ; Pope et al., 2000 ). Working in teams can be useful for establishing reliability in coding as well as in theme development. Team members of various backgrounds will inevitably have conflicting interpretations of data leading to necessary discussions where multiple perspectives are taken into account and researchers attempt to distinguish between what is the researcher’s interpretation and what is an actual finding ( Kinnafick et al., 2014 ; Pope et al., 2000 ).

Results of Longitudinal Qualitative Research

The emergent nature of qualitative inquiry requires flexibility in research design, data collection and analyses. Defining the endpoint for analyses can be difficult and knowing at what point and in what format to disseminate your findings is equally challenging ( Thomson & Holland, 2003 ). Likewise, identifying a “gold standard” or “rules” that must be followed to ensure rigor is also a challenge and potentially less relevant as LQR research may be enriched by diverse strategies tailored to address specific research questions. Indeed, Nevedal et al. (2018) credits flexibility in LQR as a key facilitator that fosters innovation and creativity.

Ultimately, researchers aim to present results that speak to their original research objectives and in LQR, this includes a deeper understanding of the experience of change across time. Common outcomes presented in LQR publications are themes (and how they change across time), intervention development/evaluation, or conceptual pathways. For example, Clermont et al. (2018) were able to identify themes that explained decreased utilization of nutrient supplements in pregnant women despite their stated high level of acceptance. Mean-while, Corepal et al. (2018) used their qualitative study to better understand how and why an intervention designed to promote physical activity was effective among a group of adolescents. Findings from another LQR study among people living with HIV in Kenya provided key information to understand how and why a livelihood intervention impacted health behaviors ( Weiser et al., 2017 ). LQR may also identify changes in needs or levels of stress that can in turn be used to inform the development of supportive interventions ( Murray et al., 2009 ). Findings from LQR may ultimately be used by providers and case managers designing interventions to support an experience or transition that occurs across time such as a person transitioning from aggressive curative therapies to hospice care or an individual managing a progressive chronic illness (see Table 1 for additional examples).

Trustworthiness of Longitudinal Qualitative Research

The outcomes of the LQR must also adhere to a standard of rigor and quality that ensures meaningful qualitative findings. One way to describe this is by using the principle referred to as trustworthiness of data ( Polit & Beck, 2017 ). Trustworthiness of qualitative data is based on four principles, 1) credibility—how confident the researcher is in the truth of the data; 2) transferability—the extent to which the findings can be compared to similar populations in other settings; 3) confirmability—the degree to which research findings are based on participant narratives—the researcher was neutral in their analysis and interpretation and 4) dependability—the study design could be repeated with consistent findings ( Polit & Beck, 2017 ). Strategies to ensure each of these principles are met have been thoroughly discussed in the nursing literature (see Polit & Beck, 2017 ). In LQR, however, other considerations may be necessary to achieve trustworthiness.

In LQR there is often the need to make ongoing decisions about processes and procedures throughout the study including revising study guides or protocols, even if midway into the study. Changes may be essential to effectively achieve meaningful data that can be used to develop new knowledge ( Saldaña, 2003 ). That said, some qualitative researchers note that changing interview guides and formats can make it challenging to compare the responses of participants across time ( Kneck & Audulv, 2019 ). In contrast, Saldaña (2003) , argues that adjusting methods to enhance data richness allows the opportunity to gain greater descriptions that ultimately may serve a larger audience, thus satisfying the transferability principle of data trustworthiness. Transparency in reporting how and why decisions and changes to the study were made, is therefore vital to trustworthiness as it allows others to consider the decisions and changes that were made in conjunction with the researcher’s findings ( Sandelowski, 1986 ).

Discussion of Challenges in Longitudinal Qualitative Research

Despite clear benefits of LQR, there are several noteworthy challenges. First, depending on the objective of the study and the nature of the change being observed, researchers may be balancing a number of different logistical and conceptual challenges. Whether the study is investigating a disease state versus a significant life change will result in different participant experiences that may need varying amounts of time to capture the essence of that change; the amount of time needed may be a feasibility limitation for some researchers in terms of securing long-term funding as well as retaining participants. A second and related challenge is the labor-intensive nature of LQR which requires adequate funding to maintain research staff throughout the study period. Third, ethical considerations may be different for LQR versus cross sectional. By nature of LQR trying to ascertain a change across time, some studies may focus on enrolling youth or adolescents to follow over a certain number of years. This will require the careful consideration of consent processes, including the participants ability to consent and understand the objective of the study. In addition, informed consent should acknowledge the potential (albeit unknown) effects of long-term participation especially among young people whose life changes may be more unpredictable than middle-aged adults. Likewise, in cases where a person’s condition deteriorates, perhaps due to end of life, the ability to reconsent may be lost ( Murray et al., 2009 ). A fourth challenge that we note is LQR analyses are often poorly described in the literature making it difficult to follow the “recipe” (or even the thought processes) of other researchers with regard to how results were generated. This lack of explanation compromises the trustworthiness (more specifically the dependability) of the results.

Finally, a note about causality in LQR. Determining causality often requires longitudinal data to establish pathways where there is no doubt about the role of an independent variable on a dependent outcome. However, in terms of human experiences, causation is neither linear nor singular in many cases. Transitions are often impacted by multiple causes and may be better explained as “loops” versus “lines” ( Pettigrew, 1990 ). Causation is also shown when isolating independent and dependent variables to account for any confounding. However, transitions and behaviors are marked by convergent interactions and interconnected variables across time. Thus, LQR is well suited to establish or verify patterns of interactions and complex pathways but is not meant to show causation.

Summary and Conclusion

In summary, LQR provides a unique and important opportunity to understand human experiences across time within an individual and among a group using a more holistic, in-depth approach than is possible with retrospective or cross-sectional research alone. However, conducting LQR is complex and time consuming given the inherent contextual considerations of time and change and the many challenges and considerations unique to LQR. Ultimately, the task of exploring change is most effective when flexibility and acknowledgment of the process is considered at the outset. The main process elements include, managing large amounts of data; flexibility in data collection techniques to respond to data quality; sensitivity to many possible types of change that may be occurring; determining whether and in what ways these multiple types of change interrelate with each other; analyzing how and/why these changes occur; and pulling everything together in a complete and coherent report.

Ultimately, researchers must consider these complexities and processes alongside their research objectives to determine whether LQR is an appropriate choice. Our aim was to provide guidance on methodological considerations to aid the decision processes and support well informed study implementation.

Acknowledgments

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by UCSF Center for AIDS Prevention Studies and UCSF Center for AIDS Research (ELT) and by the National Institutes of Health Grants K23MH116807 (ELT) and K01MH112443 (JAP).

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Baillie C, Smith J, Hewison J, & Mason G (2000). Ultrasound screening for chromosomal abnormality: Women’s reactions to false positive results . British Journal of Health Psychology , 5 ( 4 ), 377–394. 10.1348/135910700168991 [ CrossRef ] [ Google Scholar ]
Balmer D, & Richards B (2017). Longitudinal qualitative research in medical education . Perspectives on Medical Education , 6 ( 5 ), 306–310. 10.1007/s40037-017-0374-9 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
Burnard P, Gill P, Stewart K, Treasure E, & Chadwick B (2008). Analysing and presenting qualitative data . British Dental Journal , ( 204 ), 429–432. 10.1038/sj.bdj.2008.292 [ PubMed ] [ CrossRef ] [ Google Scholar ]
Calman L, Brunton L, & Molassiotis A (2013). Developing longitudinal qualitative designs: Lessons learned and recommendations for health services research . BMC Medical Research Methodology , 13 ( 14 ), 1–10. 10.1186/1471-2288-13-14 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
Carter S, & Little M (2007). Justifying knowledge, justifying method, taking action: Epistemologies, methodologies, and methods in qualitative research . Qualitative Health Research , 17 ( 10 ), 1316–1328. 10.1177/1049732307306927 [ PubMed ] [ CrossRef ] [ Google Scholar ]
Chick N, & Meleis AI (1986). Transitions: A nursing concern. In Chinn PL (Ed.) Nursing research methodology (pp. 237–257). Aspen Publication. [ Google Scholar ]
Chinn P, & Kramer M (Eds.). (2011). Integrated theory and knowledge development in nursing (8th ed.). Elsevier. [ Google Scholar ]
Clermont A, Kodish SR, Matar Seck A, Salifou A, Rosen J, Grais RF, & Isanaka S (2018). Acceptability and utilization of three nutritional supplements during pregnancy: Findings from a longitudinal, mixed-methods study in Niger . Nutrients , 10 ( 8 ), 1073. 10.3390/nu10081073 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
Colaizzi P (1978). Psychological research as a phenomenologist views it. In Valle RS & King M (Eds.), Existential phenomenological alternatives for psychology . Open University Press. [ Google Scholar ]
Cooper HL, Caruso B, Barham T, Embry V, Dauria E, Clark C, & Comfort M (2015). Partner incarceration and African-American women’s sexual relationships and risk: A longitudinal qualitative study . Journal of Urban Health , 92 ( 3 ), 527–547. 10.1007/s11524-015-9941-8 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
Corepal R, Best P, O’Neill R, Tully MA, Edwards M, Jago R, Miller SJ, Kee F, & Hunter RF (2018). Exploring the use of a gamified intervention for encouraging physical activity in adolescents: A qualitative longitudinal study in Northern Ireland . BMJ Open , 8 ( 4 ), e019663. 10.1136/bmjopen-2017-019663 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
De Chesnay M, & Abrums ME (2015). Nursing research using ethnography: Qualitative designs and methods . Springer Publishing Company. [ Google Scholar ]
Doherty T, Chopra M, Nkonki L, Jackson D, & Persson L (2006). A longitudinal qualitative study of infant-feeding decision making and practices among HIV-positive women in South Africa . The Journal of Nutrition , 136 ( 9 ), 2421–2426. 10.1093/jn/136.9.2421 [ PubMed ] [ CrossRef ] [ Google Scholar ]
Glanz K, Rimer BK, & Viswanath K (2008). Health behavior and health education: Theory, research, and practice (4th ed.). Jossey-Bass. [ Google Scholar ]
Glaser BG (1978). Theoretical sensitivity: Advances in the methodology of grounded theory . Sociology Press. [ Google Scholar ]
Glaser BG, & Strauss AL (1967). The discovery of grounded theory: Strategies for qualitative research . Aldine de Gruyter. [ Google Scholar ]
Gray MA, & Smith LN (2000). The qualities of an effective mentor from the student nurse’s perspective: Findings from a longitudinal qualitative study . Journal of Advanced Nursing , 32 ( 6 ), 1542–1549. 10.1046/j.1365-2648.2000.01606.x [ PubMed ] [ CrossRef ] [ Google Scholar ]
Grossoehme D, & Lipstein E (2016). Analyzing longitudinal qualitative data: The application of trajectory and recurrent cross-sectional approaches . BMC Research Notes , 9 ( 1 ), 136. 10.1186/s13104-016-1954-1 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
Guba EG, & Lincoln YS (1981). Effective evaluatio ., Jossey-Bass. [ Google Scholar ]
Hatcher AM, Lemus Hufstedler E, Doria K, Dworkin SL, Weke E, Conroy A, Bukusi A, Cohen C, & Weiser SD (2019). Mechanisms and perceived mental health changes after a livelihood intervention for HIV-positive Kenyans: Longitudinal, qualitative findings . Transcultural Psychiatry , 57 ( 1 ), 124–139. 10.1177/1363461519858446 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
Henderson S, Holland J, McGrellis S, Sharpe S, & Thomson R (2012). Storying qualitative longitudinal research: Sequence, voice and motif . Qualitative Research , 12 ( 1 ), 16–34. 10.1177/1468794111426232 [ CrossRef ] [ Google Scholar ]
Hennink MM, Kaiser BN, & Marconi VC (2017). Code saturation versus meaning saturation: How many interviews are enough? Qualitative Health Research , 27 ( 4 ), 591–608. 10.1177/1049732316665344 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
Hermanowicz J (2013). The longitudinal qualitative interview . Qualitative Sociology , 36 ( 2 ), 189–208. 10.1007/s11133-013-9247-7 [ CrossRef ] [ Google Scholar ]
Jardine EE, McLellan J, & Dombrowski SU (2017). Is being resolute better than being pragmatic when it comes to breastfeeding? Longitudinal qualitative study investigating experiences of women intending to breastfeed using the theoretical domains framework . Journal of Public Health (Oxford, England) , 39 ( 3 ), e88–e94. 10.1093/pubmed/fdw073 [ PubMed ] [ CrossRef ] [ Google Scholar ]
Johansen AB, Brendryen H, Darnell FJ, & Wennesland DK (2013). Practical support aids addiction recovery: The positive identity model of change . BMC Psychiatry , 13 ( 1 ), 201. 10.1186/1471-244X-13-201 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
Kinnafick F, Thøgersen-Ntoumani C, & Duda JL (2014). Physical activity adoption to adherence, lapse, and dropout . Qualitative Health Research , 24 ( 5 ), 706–718. 10.1177/1049732314528811 [ PubMed ] [ CrossRef ] [ Google Scholar ]
Kneck Å , & Audulv Å . (2019). Analyzing variations in changes over time: Development of the pattern-oriented longitudinal analysis approach . Nursing Inquiry , 26 ( 3 ), e12288–n/a. 10.1111/nin.12288 [ PubMed ] [ CrossRef ] [ Google Scholar ]
Lewis J (2007). Analysing qualitative longitudinal research in evaluations . Social Policy and Society , 6 ( 4 ), 545–556. 10.1017/S1474746407003880 [ CrossRef ] [ Google Scholar ]
McCoy LK (2017). Longitudinal qualitative research and interpretative phenomenological analysis: Philosophical connections and practical considerations . Qualitative Research in Psychology , 14 ( 4 ), 442–458. 10.1080/14780887.2017.1340530 [ CrossRef ] [ Google Scholar ]
McLeod J, & Thoon R (2009). Researching social change . Sage Publications. https://uk.sagepub.com/en-gb/eur/researching-social-change/book229849 [ Google Scholar ]
Meleis AI, Sawyer LM, Im E, Hilfinger Messias DK, & Schumacher K (2000). Experiencing transitions: An emerging middle-range theory . Advances in Nursing Science , 23 ( 1 ), 12–28. 10.1097/00012272-200009000-00006 [ PubMed ] [ CrossRef ] [ Google Scholar ]
Miles M, Huberman M, & Saldaña J (Eds.). (2014). Qualitative data analysis: A methods sourcebook (3rd ed.). Sage. [ Google Scholar ]
Murray SA, Kendall M, Carduff E, Worth A, Harris FM, Lloyd A, Cavers D, Grant L, & Sheikh A (2009). Use of serial qualitative interviews to understand patients’ evolving experiences and needs . The BMJ , 339 ( 7727 ), 958–960. 10.1136/bmj.b3702 [ PubMed ] [ CrossRef ] [ Google Scholar ]
Namukwaya E, Murray S, Downing J, Leng M, & Grant L (2017). I think my body has become addicted to those tablets’. Chronic heart failure patients’ understanding of and beliefs about their illness and its treatment: A qualitative longitudinal study from Uganda . PLoS One , 12 ( 9 ), e0182876. 10.1371/journal.pone.0182876 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
Nevedal AL, Ayalon L, & Briller SH (2018). A Qualitative evidence synthesis review of longitudinal qualitative research in gerontology . The Gerontologist , 59 ( 6 ), e791–e801. 10.1093/geront/gny134 [ PubMed ] [ CrossRef ] [ Google Scholar ]
Oosterveld-Vlug MG, Pasman HRW, van Gennip IE, Willems DL, & Onwuteaka-Philipsen BD (2013). Changes in the personal dignity of nursing home residents: A longitudinal qualitative interview study . PLoS One , 8 ( 9 ), e73822. 10.1371/journal.pone.0073822 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
Pellowski JA, Harrison AD, Colvin CJ, Brittain K, Rini Z, Cu-Uvin S, Myer L, Operario D, & Lurie MN (2019, October, 21–22). HIV treatment adherence among pregnant and postpartum women in Cape Town, South Africa: Using transition theory to analyze longitudinal qualitative data [Poster presentation] . Inter-CFAR Women and HIV Symposium, Chicago, IL, United States. [ Google Scholar ]
Pelto PJ (2013). Applied ethnography: Guidelines for field research . Left Coast Press. [ Google Scholar ]
Pettigrew AM (1990). Longitudinal field research on change: Theory and practice . Organization Science , 1 ( 3 ), 267–292. 10.1287/orsc.1.3.267 [ CrossRef ] [ Google Scholar ]
Polit D, & Beck CT (Eds.). (2017). Nursing research: Generating and assessing evidence for nursing practice (10th ed.). Wolters Kluwer Health. [ Google Scholar ]
Pope C, Ziebland S, & Mays N (2000). Analysing qualitative data . The BMJ , 320 ( 7227 ), 114. 10.1136/bmj.320.7227.114 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
Riessman C (1993). Narrative analysis . Sage Publications. [ Google Scholar ]
Saldaña J (2003). Longitudinal qualitative research . Rowman & Littlefield Publishers. [ Google Scholar ]
Saldaña J (2009). Coding manual for qualitative researchers . Sage Publications. [ Google Scholar ]
Salter C, McDaid L, Bhattacharya D, Holland R, Marshall T, & Howe A (2014). Abandoned acid? Understanding adherence to bisphosphonate medications for the prevention of osteoporosis among older women: A qualitative longitudinal study . PloS One , 9 ( 1 ), e83552. 10.1371/journal.pone.0083552 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
Sandelowski M (1986). The problem of rigor in qualitative research . Advances in Nursing Science , 8 ( 3 ), 27–37. [ PubMed ] [ Google Scholar ]
Schmidt B, Schoppe-Sullivan S, Frizzo G, & Piccinini C (2019). A qualitative multiple case study of the division of labor across the transition to parenthood in south-Brazilian families . Sex Roles , 81 ( 5 ), 272–289. 10.1007/s11199-018-0999-0 [ CrossRef ] [ Google Scholar ]
Sheard L, & Marsh C (2019). How to analyse longitudinal data from multiple sources in qualitative health research: The pen portrait analytic technique . BMC Medical Research Methodology , 19 ( 1 ), 169. 10.1186/s12874-019-0810-0 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
Smith N (2003). Cross-sectional profiling and longitudinal analysis: Research notes on analysis in the longitudinal qualitative study, ‘negotiating transitions to citizenship’ . International Journal of Social Research Methodology , 6 ( 3 ), 273–277. 10.1080/1364557032000091888 [ CrossRef ] [ Google Scholar ]
SmithBattle L, Lorenz R, Reangsing C, Palmer JL, & Pitroff G (2018). A methodological review of qualitative longitudinal research in nursing . Nursing Inquiry , 25 ( 4 ), e12248–n/a. 10.1111/nin.12248 [ PubMed ] [ CrossRef ] [ Google Scholar ]
Solomon P, O’Brien KK, Nixon S, Letts L, Baxter L, & Gervais N (2018a). Qualitative longitudinal study of episodic disability experiences of older women living with HIV in Ontario, Canada . BMJ Open , 8 ( 4 ), e021507. 10.1136/bmjopen-2018-021507 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
Solomon P, O’Brien KK, Nixon S, Letts L, Baxter L, & Gervais N (2018b). Trajectories of episodic disability in people aging with HIV: A longitudinal qualitative study . Journal of the International Association of Providers of AIDS Care (JIAPAC) , 17 , 1–7. 10.1177/2325958218759210 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
Thomson R (2007). The qualitative longitudinal case history: Practical, methodological and ethical reflections . Social Policy and Society , 6 ( 4 ), 571–582. 10.1017/S1474746407003909 [ CrossRef ] [ Google Scholar ]
Thomson R, & Holland J (2003). Hindsight, foresight and insight: The challenges of longitudinal qualitative research . International Journal of Social Research Methodology , 6 ( 3 ), 233–244. 10.1080/1364557032000091833 [ CrossRef ] [ Google Scholar ]
Tracy SJ (2010). Qualitative quality: Eight “big-tent” criteria for excellent qualitative research . Qualitative Inquiry , 16 ( 10 ), 837–851. 10.1177/1077800410383121 [ CrossRef ] [ Google Scholar ]
Weiser S, Hatcher A, Hufstedler L, Weke E, Shari DL, Bukusi EA, Burger RL, Kodish S, Grede N, Butler LM, & Cohen C (2017). Changes in health and antiretroviral adherence among HIV-infected adults in Kenya: Qualitative longitudinal findings from a livelihood intervention . AIDS and Behavior , 21 ( 2 ), 415–427. 10.1007/s10461-016-1551-2 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
Zeilani R, & Seymour JE (2010). Muslim women’s experiences of suffering in Jordanian intensive care units: A narrative study . Intensive & Critical Care Nursing , 26 ( 3 ), 175–184. 10.1016/j.iccn.2010.02.002 [ PubMed ] [ CrossRef ] [ Google Scholar ]
Zeilani R, & Seymour JE (2012). Muslim women’s narratives about bodily change and care during critical illness: A qualitative study . Journal of Nursing Scholarship , 44 ( 1 ), 99–107. 10.1111/j.1547-5069.2011.01427 [ PubMed ] [ CrossRef ] [ Google Scholar ]

Research article
Open access
Published: 05 February 2021

The STS case study: an analysis method for longitudinal qualitative research for implementation science

Jennifer M. Van Tiem 1 , 2 ,
Heather Schacht Reisinger 1 , 2 , 3 , 4 ,
Julia E. Friberg 1 , 2 ,
Jaime R. Wilson 1 , 2 ,
Lynn Fitzwater 5 ,
Ralph J. Panos 5 &
Jane Moeckli 1 , 2

BMC Medical Research Methodology volume 21 , Article number: 27 ( 2021 ) Cite this article

4090 Accesses

5 Citations

Metrics details

Ethnographic approaches offer a method and a way of thinking about implementation. This manuscript applies a specific case study method to describe the impact of the longitudinal interplay between implementation stakeholders. Growing out of science and technology studies (STS) and drawing on the latent archaeological sensibilities implied by ethnographic methods, the STS case-study is a tool for implementors to use when a piece of material culture is an essential component of an innovation.

We conducted an ethnographic process evaluation of the clinical implementation of tele-critical care (Tele-CC) services in the Department of Veterans Affairs. We collected fieldnotes and conducted participant observation at virtual and in-person education and planning events ( n = 101 h). At Go-Live and 6-months post-implementation, we conducted site visits to the Tele-CC hub and 3 partnered ICUs. We led semi-structured interviews with ICU staff at Go-Live (43 interviews with 65 participants) and with ICU and Tele-CC staff 6-months post-implementation (44 interviews with 67 participants). We used verification strategies, including methodological coherence, appropriate sampling, collecting and analyzing data concurrently, and thinking theoretically, to ensure the reliability and validity of our data collection and analysis process.

The STS case-study helped us realize that we must think differently about how a Tele-CC clinician could be noticed moving from communal to intimate space. To understand how perceptions of surveillance impacted staff acceptance, we mapped the materials through which surveillance came to matter in the stories staff told about cameras, buttons, chimes, motors, curtains, and doorbells.

Conclusions

STS case-studies contribute to the literature on longitudinal qualitive research (LQR) in implementation science, including pen portraits and periodic reflections. Anchored by the material, the heterogeneity of an STS case-study generates questions and encourages exploring differences. Begun early enough, the STS case-study method, like periodic reflections, can serve to iteratively inform data collection for researchers and implementors. The next step is to determine systematically how material culture can reveal implementation barriers and direct attention to potential solutions that address tacit, deeply rooted challenges to innovations in practice and technology.

Peer Review reports

Ethnographic approaches offer both a method and a way of thinking about implementation science. As method, ethnography offers specific ways to document and track the implementation process in health services research. These include rapid cycle assessment [ 1 , 2 ], periodic reflections [ 3 ], and pen portraits [ 4 ], which are based upon the triangulation of multiple, diverse data sources (i.e., participant observation, in-depth interviews, document review) [ 5 , 6 ]. As a way of thinking, ethnography orients researchers and implementors to “everyday” contexts, which includes the local and the lived experience, as well as the tacit and implied [ 7 , 8 ]. Applied to process evaluations [ 9 , 10 , 11 ], adaptation and tailoring [ 3 ], and facilitation [ 5 ], the primary contribution of an ethnographic approach to implementation science [ 12 ] is its comparative and holistic examination of people’s social worlds in relationship to newly introduced interventions.

We seek to contribute to the literature on ethnography in implementation science by illustrating an approach of the case study method that we believe is well-suited to describe the impact of the longitudinal interplay between implementation stakeholders. Case studies are a familiar way to present ethnographic findings related to implementation processes [ 13 , 14 ]. In this article, we demonstrate a form of the case study method that grows out of science and technology studies (STS) and draws out the latent archaeological sensibilities implied by ethnographic methods [ 15 , 16 , 17 , 18 ]. Archeological insights are gleaned from attention to material culture, or the “stuff” with which people carry out the work of their everyday lives. Stories about how people carry out their lives with their stuff has been the work of ethnography since its inception as a method [ 19 ], but STS shifts the point of view of the narrator. Rather than stories told from the perspective of the human actors, STS starts with the material object and builds stories about the world based on how things and people share and shape each other through social practices [ 15 , 20 ].

This kind of storytelling is familiar to doctors and nurses, who “expect the patient to tell a story about daily life-events in which entities of all kinds (beans, blood, table companions, cars, needs, sugar) coexist and interfere with one another” [ 16 ]. Writing an STS case study challenges researchers to “tell stories about medicine” that read like “a good case history” [ 16 ]. To illustrate the potential of this method, in this article we “recover archaeologically and interrogate ethnographically” part of the process of implementing critical care telemedicine (Tele-CC) in the Department of Veterans Affairs (VA) [ 21 ]. By tracing the Tele-CC implementation process through people’s use and manipulation of elements of material culture, we will ground our interpretation of our observations and interviews in some of the actual objects people handled every day in their interactions with Tele-CC. We engaged with sites through repeated brief encounters over several years. As a result, we will be able to describe the contextual shaping of Tele-CC implementation through time, as well as across sites at specific points in time.

We argue that this form of case study (termed an “STS case study”) is a novel form of longitudinal qualitative research (LQR) that allows implementors to understand and impact the implementation process by distilling a lot of diverse data [ 22 , 23 ] into summaries and categories that make it possible to follow and understand change over time [ 23 ]. LQR is both a method for data collection and data analysis. Data collection based on LQR involves ethnographic engagement [ 24 ] and data analysis techniques requiring both cross-sectional and longitudinal examinations [ 22 , 25 ]. Taken together, these data collection and analysis strategies make complexity digestible. Qualitative researchers in implementation science have picked up and used LQR to track adaptations through periodic reflections [ 3 ] and pen portraits [ 4 ]. Periodic reflections are a format for guided discussions, conducted over time, that serve as a record of an implementation effort [ 3 ]. A pen portrait organizes data from different sources, at different time points, together in one document; it is like a collage describing one site where an innovation is being implemented [ 4 ]. Both periodic reflections [ 26 , 27 , 28 , 29 ] and pen portraits [ 30 , 31 ] have been used in the field to help develop study protocols; pen portraits have also been used as a method of data analysis [ 32 , 33 ]. As a novel form of LQR, the STS case study method introduces the opportunity to engage with material culture, and thus contributes a way to focus and re-focus, or calibrate, the analytic lens, or to look for how local use and understanding of the material elements of an intervention changes over time, and what that could mean for the normalization [ 34 , 35 , 36 ] of the implementation as a whole. The aims of this paper are twofold: 1) to contribute to the literature on the role of ethnography in implementation science; and to achieve that by providing a case study about 2) tracing how Tele-CC and ICU staff negotiate the implementation of surveillance technology.

The goal of the VA Tele-CC program is to expand and improve the quality of critical care delivery. In 2011–2012, two Tele-CC programs launched in VA utilizing Philips eCareManager. Currently, two hubs with attendant satellite-hubs, serve approximately 30% of VA ICUs. In 2016, one of the two Tele-CC hubs in VA partnered with eight ICUs that were primarily lower-resourced, smaller, and located in geographically isolated rural hospitals that have been especially affected by the national shortage of critical care-certified physicians and nurses [ 37 , 38 , 39 ]. The VA Office of Rural Health (ORH) funded the provision of Tele-CC in these ICUs. Tele-CC includes bedside physiologic monitor upgrades, continuous monitoring, night and weekend tele-intensivist support, and on-demand support for emergency departments. It is a technological innovation that requires both the unidirectional flow of data inputs (e.g., vital signs and labs) from the bedside to the Tele-CC, as well as teamwork between ICU and Tele-CC staff to make decisions based on these inputs and provide care. Proprietary Philips algorithms built into the Tele-CC system alert Tele-CC staff to acute physiologic concerns (e.g., sepsis alert), and the Tele-CC staff then investigate by reviewing the inputs and connecting with the ICU staff.

Prior research has shown mixed results related to staff acceptance of Tele-CC [ 40 ]. Knowing this, external facilitators [ 41 , 42 , 43 ] built a community of practice around Tele-CC through commitment work [ 35 , 44 ] characterized by a series of implementation strategies related to planning and education (i.e., building buy-in, developing relationships, developing materials, and educating) [ 45 ] that unfolded over time through virtual and in-person events. There were separate and coinciding technical, clinical, and interface implementation efforts. We followed the clinical implementation. Virtual “Clinical Information Calls” led by external facilitators and attended by internal facilitators pre-figured the in-person “Clinical Process Design Workshop (CPDW).” The Clinical Information Calls continued through an intensive 2-h Skype “Train the Trainer” that was followed by the culminating event, the in-person inauguration of Tele-CC services, or the “Go-Live.”

The Tele-CC nurses had all worked as bedside ICU nurses. They understood the protectiveness and emotional attachment characteristic of relationships between nurses, patients, and families in ICUs; they also understood that offering critical care virtually could disrupt relationships at the bedside. This manuscript will trace how Tele-CC and ICU staff negotiated mundane connections occurring within the daily flow of Tele-CC and ICU staff in and out of patients’ rooms. In the STS case study presented in this manuscript, we will model how to use STS and pay attention to aspects of material culture that may help implementors better understand and intervene upon Tele-CC implementation barriers.

Overall aim & Design

Elements of our ethnographic process evaluation [ 9 ] have been laid out in a previous manuscript [ 46 ]; the supporting research was approved by the University of Iowa Institutional Review Board (IRB # 201311734). The clinical leader of the implementation (RP) formally introduced the evaluation team (HSR, JM, JVT, JF) at the Clinical Process Design Workshop, which served as a kick-off meeting for each new round of sites. During subsequent site visits and in conversation with participants, the evaluation team introduced themselves as social scientists. We indicated that we would report our findings to the VA Office of Rural Health, which was funding the evaluation of the implementation of Tele-CC in rural sites across the United States (Award # 14385).

Over the course of 16 months, the evaluation team conducted participant observation, including producing fieldnotes [ 47 ], document review, and interviewing using qualitative techniques (e.g., root questions) [ 48 ]. We analyzed our data by first organizing segments of fieldnotes and interview transcripts according to categories [ 49 ] of implementation strategies and then according to complementarity of information across types of data (observations and fieldnotes, documents, and interviews) collected longitudinally [ 4 ], in order to build a case study in the tradition of STS. Across our data collection and analysis, we used verification strategies [ 50 ] in order to ensure the reliability and validity of our process and findings.

In this article, we will trace how external facilitators used planning and educating implementation strategies (e.g., building buy-in, developing relationships, developing materials, and educating) to normalize Tele-CC. Specifically, we will focus on the conversations around the doorbell (a chime that would ring over the speaker in the patient’s room), a feature of the Tele-CC that Tele-CC staff use to mark their impending presence in the ICU room. The focus on the material culture of the doorbell developed during the iterative analysis process (see analysis section below). We used ethnographic data collection techniques through time, as well as across sites at one point in time. As a result, we were able to produce stratigraphic observations and horizontal exposures of the tensions around the doorbell, and thus generate a partial ethnography of the uneven normalization of Tele-CC in VA.

Setting & characteristics of participants

Our continuous virtual ethnographic engagement with the implementation of Tele-CC was punctuated by in-person site visits and presence at training events. The evaluation team was included on the list of attendees at virtual events and meetings, alongside internal and external facilitators. Prior to site visits, internal facilitators and ICU staff were approached via email regarding interviews with the evaluation team. A convenience sample of external and internal facilitators, as well as ICU staff, was selected based on their presence and involvement in the implementation of Tele-CC. Participation in interviews with the evaluation team was not mandatory; however, no one outright refused to participate. External and internal facilitators from the Tele-CC and ICUs included intensivists, advanced practice nurses, and nurse managers. ICU staff included intensivists, hospitalists, nurse managers, nurses, telemetry techs, and nursing assistants across all shifts. This article reports on fieldnotes from virtual events, including the Clinical Implementation Calls and Train the Trainer event, as well as our fieldnotes and interviews at in-person events, including the Clinical Process Design Workshops (CPDW) and sites visits at three ICUs that adopted Tele-CC.

Data collection

Three ethnographers, with post-graduate degrees in geography, public health, and anthropology (JM, JF, and JVT, respectively) led the data collection efforts. We collected fieldnotes throughout the implementation process. During the virtual events (Clinical Information Calls, Train the Trainer), we called into the meetings and were largely silent; our presence was registered on the attendee list. At in-person events (CPDW, Go-Live), we embedded ourselves within small groups and participated with them in whatever activities were taking place. At 6-months post-implementation, we returned to the sites and conducted semi-structured interviews with ICU staff and internal facilitators.

Observations and Fieldnotes

During virtual events, JF and JVT observed conversations between external facilitators and internal facilitators. Conversations revolved around technical readiness, information about dates and times of upcoming events (CPDW, TTT, Go-Live), questions from the internal facilitators, and, post-CPDW, an in-depth review of each workflow layering Tele-CC into ICU practice. During the CPDW, we took notes on the lecture accompanying the PowerPoint Presentation, questions posed by internal facilitators, conversations among internal facilitators, the simulation demonstrating how the Tele-CC can assist ICUs, and the process of developing workflows. During Go-Live events, we took notes on small-group training sessions and simulations. In total, we conducted 101 h of observation (42 h during the Clinical Information Calls, 4 h during the Train the Trainer sessions, 35 h at the CPDWs, and 20 h at the Go-Live events).

Document retrieval

JF and JVT collected copies of distributed materials, including PowerPoint presentations, workflow diagrams, training templates, brochures for doctor orientation and patient and family guides, as well as copies of the scripts for training simulations. In this article, we focus specifically on the elements of the documents that focused on the doorbell, including several PowerPoint slides, and the workflow diagrams around “Camera Etiquette” (see Additional file 1 ).

Semi-structured interviews

During Go-Live, and then at 6-months post implementation, JM and JVT conducted semi-structured qualitative interviews using qualitative techniques, including linguistic intentionality, root questions, and grounded probes, in order to solicit multiple perspectives and make space to question assumptions [ 48 ] (Additional file 2 ). To promote conversation and reflexivity [ 51 ], two researchers co-led each interview. At the initiation of Tele-CC services at the site, we asked questions about the structure and function of the ICU and the patient population, preparations they had made for the implementation of the Tele-CC, as well as their knowledge about the Tele-CC. At 6-months post-implementation, we asked questions about staff expectations and perceptions of the Tele-CC, as well as how they had used it. Interview duration was based on participant availability; however, no interview lasted longer than 60 min. Interviews were audio recorded, transcribed by trained transcriptionists, and uploaded into MAXQDA for analysis [ 52 ]. Transcripts were not returned to participants for comment or correction, however we did do some member-checking [ 53 ] during repeat interviews either with the same individual, or individuals who occupied the same role, as we visited the same three ICUs at Go-Live and then 6 months post-implementation. Details about these interviews are reported in an earlier manuscript [ 46 ]; additional information is included in Table 1 (below).

Data analysis

The analysis described here was conducted for the specific objectives noted above and reflects a small part of the larger evaluation of Tele-CC implementation in VA conducted by our team [ 46 , 54 , 55 ]. Throughout our evaluation, JM, JF, and JVT used qualitative data verification strategies, to ensure the reliability and validity of our data collection and analysis process [ 50 ]. We have also been guided by Normalization Process Theory [ 34 , 35 , 36 ]; for this analysis JVT, JM, and JF categorized each implementation process by the normalization work involved: enrolment, initiation, legitimation, or activation. These details are laid out in Table 1 .

After organizing the data in this way, JVT deductively coded [ 49 ] fieldnotes according to the implementation strategies of planning and education (i.e., building buy-in, developing relationships, developing materials, and educating) [ 45 ]. While deductively coding, JVT found that one of the most intact examples of a workflow, the one for “Camera Etiquette,” was also an element of the implementation for which we had a diverse pool of data (fieldnotes, interviews, and documents). JVT conducted lexical searches across fieldnotes and interviews for “workflow” and “camera.” JVT organized the coded segments that included the terms “workflow” and “camera” chronologically, according to elements of commitment work, and noticed a particularly potent interaction between an external facilitator and an internal facilitator around the idea of the doorbell. To draw out the potential tension, and collect data from as many voices as possible, JVT conducted another lexical search for “doorbell” in interviews with all staff interviewed 6-months post-implementation at the sites. Throughout this analytic process, JVT was in conversation with JM about the application of Normalization Process Theory as an etic frame, as well the possibilities afforded by approaching the data from the perspective of science and technology studies (STS). As a result, JM and JVT wrote the article in an iterative process, in conversations shaped by effective qualitative interview techniques designed to encourage reflexivity [ 51 ] and thus draw out the richness of the connections highlighted by the different forms of data (fieldnotes, documents, interviews) collected over time [ 4 ]. We refined the discussion and conclusions through discussions and writing with the clinical leader of the implementation (who was also the Medical Director of the Tele-CC) (RP), the external educator who co-led the Go-Live trainings (who was also an APRN in the Tele-CC) (LF), and a subject matter expert who was a former ICU nurse and current VA Rural Health Scholar (JW).

Following the doorbell through the layers of the implementation process, and then across three sites at 6-months post-implementation, we exposed how different and divergent notions of surveillance grew up through the implementation of Tele-CC. We pieced together this narrative about surveillance based on our ethnographic method of data collection. Concerns about surveillance are a barrier to staff acceptance of Tele-CC, and to understand how surveillance is a barrier, we can map the materials through which surveillance comes to matter. To tell stories about surveillance, ICU and Tele-CC staff implicated brochures, cameras, buttons, chimes, motors, baths, curtains, courtesy, nighttime, spying, post-operative confusion, and voices.

Tele-CC staff used the doorbell to signal their entrance into the patient’s room. Following the chime, the camera would turn on and swivel around to face the patient’s bed and the face of the Tele-CC clinician would appear on the computer monitor. In contrast, ICU staff used a combination of slower, protracted signals, including knocking on the door, or tentatively moving the curtain, in combination with verbal cues to enter a patient’s room. The chime of the doorbell and the inevitable whir of the camera’s motor as it rotated toward the patient were new sounds for ICU staff. In talking about these sounds, ICU staff found a way to express their concerns about surveillance and privacy, for their patients, for their relationship with their patients, and for themselves.

Stratigraphic (longitudinal) observations (site 3 through the implementation process)

During Clinical Information Calls, in working through the “Camera Etiquette” workflow, internal facilitators and external facilitators spent time addressing questions about standardizing times when Tele-CC staff planned to round on ICU patients, obtaining verbal agreement from the patient for the Tele-CC to camera in to their room, potential equipment malfunctions and, specifically, the doorbell. Over the course of several calls, the external facilitators and internal facilitators worked to refine the workflows to best reflect how the Tele-CC could be “layered in” to the existing practices of the ICU. During the Clinical Implementation Call on July 11, 2017, during the discussion of the workflow entitled, “Camera Etiquette,” Patricia, one of the internal facilitators from Site 3 queried Morris, one of the external facilitators about the doorbell. The exchange is transcribed from fieldnotes below:

Patricia (Site 3): Is there a bell you ring prior in case the patient is being bathed? Morris: Yes. You’ll hear the motor of the camera move. We’ll click and show our picture. Somewhere in there, they will press a button and it will ring a doorbell. Patricia: Perfect Morris: At night, we don’t do that. We surveyed our customer clinicians. Patricia: Did you have to put up a disclaimer or any notification that cameras are being used? Morris: We give a brochure to the staff. It is a VA Telehealth rule that all patients have to consent to the video. Our nurses have a script of what they say and they’ll get consent for the audio portion of the ICU. Less than 1% of all patients refuse the [Tele-CC]. No reason to refuse, they are getting additional physicians looking over them. Does not preclude your nurses from connecting with us, just we can’t camera into the room. (Fieldnote, Clinical Implementation Call, July 11, 2017; all names are pseudonyms)

The import of Patricia’s question, “ Is there a bell you ring prior in case the patient is being bathed ,” and Morris’s response, “ You’ll hear the motor … we’ll click and show our picture … they will press a button and it will ring a doorbell ,” is not clear until the Clinical Process Design Workshop (CPDW) event 3 months later, when we participated in a conversation with Patricia and her colleague to create workflows. Our fieldnotes read,

after [an external facilitator] explained that the doorbell would sound after the [Tele-CC] nurse was in the process of camera-ing in, and that bedside staff wouldn’t have direct decision making about whether or not to permit this access … the major concern she [Patricia] mentioned was privacy for patients. [Her colleague from Site 3] replied that it would probably be similar to how people walk in and out of rooms at the hospital when rounding on patients, potentially walking in on them in moments when privacy would have been preferred. Patricia responded to this by saying in a flat tone, “Not in my ICU.” (Fieldnote CPDW, September 2017)

Similarly, the significance of Morris’s clarification that “ at night, we don’t [ring the doorbell ],” was not obvious until the Go-Live event at Site 3 (4 months after the CPDW). In an interview, Patricia spoke with us about how,

“they [the Tele-CC staff] don’t like to ring the doorbell, middle of the night to check on the patient. I want them to and they went back and forth about this … it’s like I kept saying to them, when I go into a patient’s room, I knock on the door. So that’s why I want you to ring the doorbell … you know, if I’m going into a patient’s room just with the curtains drawn, I’m gonna knock, I’m gonna say, ‘This is the nurse … [okay] if I stick my head in?’ You know? And they’ll say yes or no … but that’s the same thing I want the courtesy of the, of the doorbell.” (Site 3 T1, RN ICU)

During Go-Live, Morris oriented staff to Tele-CC through training sessions with small groups. After a brief lecture about the history of Tele-CC, Morris encouraged bedside staff to practice engaging with the Tele-CC by hitting the green button newly installed in each ICU room. In encouraging engagement with the Tele-CC, Morris specifically mentioned the doorbell. A fieldnote from one of these small groups describes his characterization of the doorbell:

Morris explains that … the hub staff can call in to the room from their end but will not do so without using a “doorbell” to buzz in to let staff and patients know that they are doing so. The camera will also rotate into the room to alert patients and on-site staff when hub staff call in. Morris has both [trainees] practice answering potential questions from patients and visitors about the cameras and the Tele-CC program along the lines of: “What is that thing? Why is it in here?” Morris also asks them to respond to a patient saying, “I don’t want it spying on me,” to which [the trainees] reply that it won’t do that. (Site 1 T1, Fieldnote)

Morris’ admonition to the trainees presages the implication of Patricia’s question about “ putting up a disclaimer or any notification about cameras,” which became visible 6 months post implementation (June 2018). Patricia had left her position, but another internal facilitator from Site 3, Forrest, who had attended the Clinical Process Design Workshop with Patricia, relayed how,

“[if] there’s no nurse in the room and there’s the [Tele-CC] nurse practitioner, you know, and the patient’s like, ‘What? I can’t hear you,’ … [and] we [the ICU nurses] didn’t hear the doorbell and then we didn’t answer it … I think that those are the kinds of opportunities we have to ensure that it’s a good patient experience … Many of our patients come post-operatively where they’re not able to be oriented [to the Tele-CC] and they could be very confused … that all of a sudden somewhere out of space a voice is coming from this thing on the wall” (Site 3 T2, MD ICU)

Retrospectively piecing together the arc of the implementation process by threading a narrative through mentions of a material object (e.g., a doorbell) was a way to re-situate ourselves in the flow of the original timeline of implementation. We developed a sense of what the doorbell was connected to (i.e., concerns about surveillance). As a result, we anticipated that looking for when people talked about the doorbell during our interviews 6-months post implementation might help us understand how conversations about surveillance changed, and also how these conversations differed across sites. Our “good case history” helped us contextualize and better understand discussions at 6-months. Looking retrospectively was a way to understand prospectively.

Horizontal (Cross-Sectional) Exposure (6-months post implementation at Site 1, Site 2, and Site 3)

Each of these threads of Patricia’s concerns were borne out amongst the ICU staff at six-months post implementation with bedside staff at Site 3. Nurses at Site 3 relayed how,

“They’re supposed to ring the doorbell. I don’t know if we don’t hear the doorbell? But we certainly don’t know when they’re gonna just pop in, usually. (Site 3 T2, RN2)

“We were under the impression … when it first got initiated, there was going to be a doorbell before any camera turning, any monitor pop … and they were supposed to talk, for instance, “Is it okay if we come in?” and that is not the case.” (Site 3 T2 RN5)

“There’s been at least three instances where they have just come in while I’ve had a patient either on the commode or standing there urinating, and I was under the impression that we could deny them entry—[P2: (overlapping) That they’re supposed to … ring a doorbell.] … Well, the doorbell rings, but then it just turns off. [P2: Oh, I don’t even hear it, yeah] … Y-you got the green button, but there should also be a red button, so if you hear the chime, you can push the red button and they WON’T come in.” (Site 3 T2 RN6 & RN 7)

Not all ICU nurses shared the perspective of the nurses at Site 3. At Site 1, we engaged two bedside nurses, who had not been internal facilitators during the implementation, in the following conversation about the doorbell at 6-months post implementation:

“[I1: We’ve heard from several different folks we’ve talked to across sites that there’s anxiety about [Tele-CC] just camera-ing into the room without calling first or ringing the doorbell. Because you had that previous set of interactions with them, has that anxiety waned?] P1: It does still surprise us sometimes when we hear a voice in there and we’ll think, “Oh, I didn’t hear the doorbell,” [I1: Yeah.] you know, so [P2: (Overlapping) Hmm yeah] sometimes the doorbell … doesn’t ring … and so they’ve [P2: Yeah.] caught us off-guard. Sometimes we’ll be in there moving a patient or something and they’ll [P2: Oh!] uh (chuckles) … We know that they will um pop in between, say, eight o’clock and nine or ten [P2: Mm-hmm.] and do an assessment on the patient, so when we hear that we’re used to hearing ‘em, but we just don’t, a lotta times don’t hear the doorbell

[I1: I see so when you hear ‘em, what do you hear?] P1: Just voices talking … They talk to the patients … [and we wonder to each other] Is that your patient? Who are they talking to? (chuckles) And then we realize it’s probably [Tele-CC] that they’re talking to

[I1: Okay so walk me through that.] P1: (Laughs) Well just sometimes it, you know, it’s eight, nine o’clock and you’ll hear someone that you-- and you’re wonderin’, is their family member in with that patient or, you know, something like that and then we kinda listen to the conversation a little bit because the [Tele-CC] has a sound, you know, [P2: Hmm.] it’s uh-- doesn’t it? Doesn’t it? It’s different than just some-- just us— [ P2: (Overlapping) Yeah, tell it’s on a speaker.] P1: Yes … Kind of an echo. [P2: Like, now if you’re listening to a radio or something, you can tell they’re-- --not right beside you. It’s--] P1: It’s a different kind of sound [P2: Mm-hmm.]. P1: It’s a different conversation than us just talking... we don’t hear it all the time, you know, and so we-we haven’t learned to assimilate it into our-our book of sounds

[I1: What does that feel like to know that there’s another presence kind of like paying attention to all of the … ] P1: (Pause) At first, it was a little uh anxious, or a little irritating just because someone else is coming in and havin’ eyes on your patient, but their-- they don’t, they don’t butt in [I1: Okay.] is what I have found. They don’t butt into the care that I’m giving.” (Site 1 T2 RN Night Shift)

At Site 2, nurses we spoke with did not mention the doorbell when they reflected on how Tele-CC staff entered patient rooms and initiated conversations. One nurse remembered how,

“I mean uh you know [they have] popped in and you know ‘how’s he doing and how’s this and how’s that.’ And converse with the people who are there. I mean I, like I said I’m fine with it. Some people I think, were very apprehensive about it. But even the people that were very apprehensive, I think that after they got used to it, they didn’t care. I mean [the Tele-CC staff] would go on ahead and they were popping in on the patients. And you know when someone’s got their door closed like over here, and the family member’s in there and that shade is pulled. Guess what? You know [Tele-CC] pops in and of course they’re gonna flag us if there’s a problem. So that’s a good thing to have.” (Site 2 T2 RN3)

Ultimately, staff at Site 3 wanted to be able to limit Tele-CC virtual entry into their ICU rooms. Staff at Site 1 and Site 2, despite having some similar misgivings about the shifting dynamic of relationships between the Tele-CC, ICU, and patient, did not feel the same way. At Site 3, the conversation hardened around hearing or not hearing the doorbell, and wanting the opportunity to hear the doorbell. At Site 1, the staff also missed the sound of the doorbell, but focused instead on how the “different kind of sound” produced by the Tele-CC signaled “a different conversation” at the bedside. Staff at Site 2 did not mention the doorbell when they recollected interactions with the Tele-CC, but they also noticed the sound of the conversation between the Tele-CC and patient; what is more, they perceived how the Tele-CC could help them circumvent barriers to entering the room (e.g., closed doors, pulled shades) that the patient and family sometimes imposed.

The ICU is a place full to bursting with sounds. Patients risk developing “ICU delirium” as a result, in part, of the sounds associated with continuous monitoring of vital signs [ 56 ] and some nurses we spoke to talked about having a “book of sounds.” We witnessed nurses respond strategically to different sounds; turning off some “alarms,” but noticing immediately and acting decisively when a sound indicated a patient was in trouble. The sound of the doorbell was new. As a noise in the ICU, the chime was an unfamiliar aural presence [ 57 , 58 ] that inadvertently encouraged nurses to notice other foreign presences accompanying the implementation of the Tele-CC.

By “recovering [the doorbell] archaeologically and interrogating [the doorbell] ethnographically” [ 21 ], we have demonstrated the utility of the STS case study as a contribution of ethnography to implementation science. While ethnography exposes the mundane particularities of an implementation, science and technology studies (STS) helps us think about how those things come to matter. Specifically, STS case-studies contribute to the literature on longitudinal qualitive research (LQR) in implementation science, including pen portraits [ 4 ] and periodic reflections [ 3 ]. Like periodic reflections and pen portraits, the STS case-study provides a way to engage with the complexity of an implementation process by tracing changes over time through interviews and observations. However, the form of an STS case-study is unique. Rather than a clean case summary, it is more like a complex case history full of the mundane bits and pieces like those pointed out by Mol and Law; here, rather than “beans, blood, [and] table companions,” we followed brochures, cameras, buttons, chimes, motors, curtains, and voices [ 16 ].

Both ICU and Tele-CC staff enter patient rooms, but they do with different tools, with different “stuff.” Bedside nurses have a curtain or a door; Tele-CC nurses have a camera that turns around and a chime they call a “doorbell.” Entering patients’ rooms implicates cameras, chimes, motors, curtains, and voices, and negotiations about how to use this stuff, sparks concerns about how ICU and Tele-CC nurses differently acknowledge movement from the communal space in the ICU to the intimate space of the patient’s room. The material stuff associated with the presence of the Tele-CC (e.g., the camera, speaker, and monitor) are already located in the patient’s room, and so we must think differently about how a Tele-CC nurse could be noticed moving from communal to private.

Though labor intensive, the components of ethnography (e.g., participant observation, fieldnotes, archival research, and interviews) generate a field of data that can be analyzed archaeologically (e.g., across and within sites, at one moment in time and over time) and as a consequence allow us to notice tacit and implied beliefs that impact an implementation process. As researchers, we did not initially know to ask about the doorbell, and it was only after combing through our fieldnotes and collected documents that we were able to trace conversations about the doorbell to planning and educating materials pre-implementation, and then forward to conversations among ICU staff 6-months post-implementation. Anchored by the material, the heterogeneity of an STS case-study generates questions (e.g., why did Patricia demand the doorbell be rung at night? Is she concerned about privacy for her staff, or the patients, or both?) and encourages exploring differences (e.g., how did nurses at Site 1 let go of wanting the sound of the doorbell and embrace the different sounds of the Tele-CC? When did the nurses at Site 2 begin to see the Tele-CC as a way for them to see into the room?). Begun early enough, the STS case-study method, like periodic reflections, can serve to iteratively inform data collection for researchers and implementors.

Tele-CC staff need a metaphor that positions the Tele-CC differently vis à vis the ICU (e.g., not a doorbell, but maybe an “arrival chime”). Terming the sound a “doorbell” implies that ICU staff may not permit Tele-CC to enter the room, much like when someone rings a doorbell at a house and the owner chooses whether to invite entry. In our context, the Tele-CC are part of the standard of care (i.e., Tele-CC cannot be denied entry into a patient’s room). Tele-CC staff recognize that ICU staff have a strong sense of autonomy in their practice and they wonder if using the term “doorbell,” and thus (incorrectly) implying that ICU staff can deny Tele-CC staff entry in to the room, creates uncertainty among ICU staff related to their own autonomy and the authority of the Tele-CC. The goal is to initiate contact with a sound that signals collaboration and partnership. Future research should explore how one negotiates virtual entry to an intimate, private space in a way that fosters teamwork.

Limitations

Our study has several limitations. First, teamwork between ICU and Tele-CC staff is so complex that 6-months is not enough time for Tele-CC and bedside staff to become familiar or comfortable with each other; in fact, it could take longer than 6 years to build trustful relationships [ 59 ]. Our data collection plan ended at 6-months post-implementation, so we did not have the opportunity to observe and learn about how staff interacted with the doorbell in the context of more trusting relationships between the ICU and Tele-CC staff. Secondly, we have no information about how patients perceive the sound of the doorbell. Finally, we do not have data gleaned from interview guides informed directly by our new understanding of the import of the doorbell. If we had the opportunity to go back to these sites, we could ask them questions that might draw out this information. However, using the STS-case study method, we were able to denote a pattern that may indicate that staff who are normalizing the sounds associated with Tele-CC may be exhibiting higher levels of acceptance of Tele-CC a part of their practice.

The STS case-study is a tool for implementors to use when a piece of material culture is an essential component of implementation. In the context of an ethnographic process evaluation of the implementation of Tele-CC services in Department of Veterans Affairs Medical Centers, the STS case-study helped us realize that we must think differently about how a Tele-CC nurse could be noticed moving from public to private space. The next step in the development of the STS case-study research method is to develop tools that will guide implementers through the STS case-study method to determine systematically how material culture can reveal implementation barriers and direct attention to potential solutions that address tacit, deeply rooted challenges to innovations in practice and technology.

Availability of data and materials

The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.

Abbreviations

Clinical Process Design Workshop

Intensive Care Unit

Longitudinal Qualitative Research

Science and Technology Studies

Tele-Intensive Care Unit (previously abbreviated as Tele-ICU)

Train the Trainer

Veterans Affairs

Palinkas LA, Zatzick D. Rapid assessment procedure informed clinical ethnography (RAPICE) in pragmatic clinical trials of mental health services implementation: methods and applied case study. Admin Pol Ment Health. 2019;46(2):255–70.

Article Google Scholar

BeeBe J. Rapid Qualitative Inquiry: A Field Guide to Team-Based Assessment. 2nd ed. London: Rowman & Littlefield; 2014.

Finley EP, Huynh AK, Farmer MM, Bean-Mayberry B, Moin T, Oishi SM, et al. Periodic reflections: a method of guided discussions for documenting implementation phenomena. BMC Med Res Methodol. 2018;18(1):153.

Article PubMed PubMed Central Google Scholar

Sheard L, Marsh C. How to analyse longitudinal data from multiple sources in qualitative health research: the pen portrait analytic technique. BMC Med Res Methodol. 2019;19(1):169.

Reisinger HS, Moeckli J, Fortney J. Rapid Ethnogrpahic Assessment for External Facilitation. 11th Annual Conference on the Science of Dissemination and Implementation. Washington, D.C; 2018.

QUALRIS. Qualitative methods in implementation science. In: sciences NNCIDoCCP, editor. Washington, D.C: US Department of Health and Human Services National Institutes of Health; 2018.

Google Scholar

Waring J, Jones L. Maintaining the link between methodology and method in ethnographic health research. BMJ Qual Saf. 2016;25(7):556–7.

Article PubMed Google Scholar

Dixon-Woods M. What can ethnography do for quality and safety in health care? Qual Saf Health Care. 2003;12:326–7.

Article CAS PubMed PubMed Central Google Scholar

Bunce A, Gold R, Davis J, McMullen C, Jaworski V, Mercer M, et al. Ethnographic process evaluation in primary care: explaining the complexity of implementation. BMC Health Serv Res. 2014;14(607).

Sutton E, Dixon-Woods M, Tarrant C. Ethnographic process evaluation of a quality improvement project to improve transitions of care for older people. BMJ Open. 2016;6(8):e010988.

Morgan-Trimmer S, Wood F. Ethnographic methods for process evaluations of complex health behaviour interventions. Trials. 2016;17(1):232.

Bauer MS, Damschroder L, Hagedorn H, Smith J, Kilbourne AM. An introduction to implementation science for the non-specialist. BMC Psychol. 2015;3:32.

McCullough MB, Chou AF, Solomon JL, Petrakis BA, Kim B, Park AM, et al. The interplay of contextual elements in implementation: an ethnographic case study. BMC Health Serv Res. 2015;15:62.

Yin R. The case study method as a tool for doing evaluation. Curr Sociol. 1992;40(1):121–37.

Ingold T. Materials against materiality. Arch Dial. 2007;14(1):1–16.

Mol A, Law J. Embodied action, enacted bodies: the example of Hypoglycaemia. Body Soc. 2004;10(2–3):43–62.

Law J. On sociology and STS. Sociol Rev. 2008;56(4):623–49.

Mol A. The body multiple: ontology in medical practice. Durham: Duke University Press; 2002.

Book Google Scholar

Malinowski B. Argonauts of the Western Pacific: an account of native Enterprise and adventure in the archipelagoes of Melanesian New Guinea London Routledge 2001 [1922].

Greenhalgh T, Swinglehurst D. Studying technology use as social practice: the untapped potential of ethnography. BMC Med. 2011;9(45).

De León J, Gokee C, Schubert A. “By the time I get to Arizona”: citizenship, materiality, and contested identities along the US–Mexico border. Anthropol Q. 2015;88(2):445–79.

Tomanović S. Reconstructing changes in Agency in the Young People’s social biographies through longitudinal qualitative research. Young. 2019;27(4):355–72.

Cameron A, Johnson EK, Lloyd L, Evans S, Smith R, Porteus J, et al. Using longitudinal qualitative research to explore extra care housing. Int J Qual Stud Health Well-being. 2019;14(1):1593038.

Bernard HR. Research methods in anthropology. 2nd ed. Walnut Creek: Altamira Press; 1995.

Solomon P, Nixon S, Bond V, Cameron C, Gervais N. Two approaches to longitudinal qualitative analyses in rehabilitation and disability research. Disabil Rehabil. 2019:1–7.

Baayd J, Simmons RG. Protocol for a process evaluation of family planning elevated: a statewide initiative to improve contraceptive access in Utah (USA). BMJ Open. 2020;10(10):e038049.

Brookman-Frazee L, Chlebowski C, Suhrheinrich J, Finn N, Dickson KS, Aarons GA, et al. Characterizing shared and unique implementation influences in two Community Services Systems for Autism: applying the EPIS framework to two large-scale autism intervention community effectiveness trials. Admin Pol Ment Health. 2020;47(2):176–87.

Hamilton AB, Brown A, Loeb T, Chin D, Grills C, Cooley-Strickland M, et al. Enhancing patient and organizational readiness for cardiovascular risk reduction among black and Latinx patients living with HIV: study protocol. Prog Cardiovasc Dis. 2020;63(2):101–8.

Morris AM, Engelberg Anderson JK, Schmitthenner B, Aylward AF, Shams RB, Hurka-Richardson K, et al. Leveraging emergency department visits to connect older adults at risk for malnutrition and food insecurity to community resources: design and protocol development for the BRIDGE study. Pilot Feasib Stud. 2020;6(1):36.

Baxter R, Murray J, O'Hara JK, Hewitt C, Richardson G, Cockayne S, et al. Improving patient experience and safety at transitions of care through the your care needs you (YCNY) intervention: a study protocol for a cluster randomised controlled feasibility trial. Pilot Feasibility Stud. 2020;6:123.

McEachan RRC, Dickerson J, Bridges S, Bryant M, Cartwright C, Islam S, et al. The born in Bradford COVID-19 research study: protocol for an adaptive mixed methods research study to gather actionable intelligence on the impact of COVID-19 on health inequalities amongst families living in Bradford. Wellcome Open Res. 2020;5:191.

Baxter R, Shannon R, Murray J, O'Hara JK, Sheard L, Cracknell A, et al. Delivering exceptionally safe transitions of care to older people: a qualitative study of multidisciplinary staff perspectives. BMC Health Serv Res. 2020;20(1):780.

Gour P, Choudhary A, Sahoo KC, Jirwe M, Hallgren M, Diwan VK, et al. Experience of Elderly People Regarding the Effect of Yoga/Light Exercise on Sedentary Behavior: A Longitudinal Qualitative Study in Madhya Pradesh, India. Geriatrics (Basel). 2020;5(4).

May CR, Cummings A, Girling M, Bracher M, Mair FS, May CM, et al. Using normalization process theory in feasibility studies and process evaluations of complex healthcare interventions: a systematic review. Implement Sci. 2018;13(1):80.

May C, Finch T. Implementing, embedding, and integrating practices: an outline of normalization process theory. Sociology. 2009;43(3):535–54.

May C. Agency and implementation: understanding the embedding of healthcare innovations in practice. Soc Sci Med. 2013;78:26–33.

Pronovost PJ, Waters H, Dorman T. Impact of critical care physician workforce for intensive care unit physician staffing. Curr Opin Crit Care. 2001;7:456–9.

Article CAS PubMed Google Scholar

Kelley MA, Chalfin DB, Crandall ED, Ingbar D, Johanson W, Medina J, et al. The critical care crisis in the United States: a report from the profession. Chest. 2004;125:1514–7.

Almenoff P, Sales A, Rounds S, Miller M, Schroeder K, Lentz K, et al. Intensive care services in the veterans health administration. Chest. 2007;132(5):1455–62.

Moeckli J, Cram P, Cunningham C, Reisinger HS. Staff acceptance of a telemedicine intensive care unit program: a qualitative study. J Crit Care. 2013;28(6):890–901.

Stetler CB, Legro MW, Rycroft-Malone J, Bowman C, Curran G, Guihan M, et al. Role of "external facilitation" in implementation of research findings: a qualitative evaluation of facilitation experiences in the veterans health administration. Implement Sci. 2006;1:23.

Lessard S, Bareil C, Lalonde L, Duhamel F, Hudon E, Goudreau J, et al. External facilitators and interprofessional facilitation teams: a qualitative study of their roles in supporting practice change. Implement Sci. 2016;11:97.

Harvey G, Loftus-Hills A, Rycroft-Malone J, Titchen A, Kitson A, McCormack B, et al. Getting evidence into practice: the role and function of facilitation. J Adv Nurs. 2002;37(6):577–88.

Bridges J, May C, Fuller A, Griffiths P, Wigley W, Gould L, et al. Optimising impact and sustainability: a qualitative process evaluation of a complex intervention targeted at compassionate care. BMJ Qual Saf. 2017;26(12):970–7.

Powell BJ, McMillen JC, Proctor EK, Carpenter CR, Griffey RT, Bunger AC, et al. A compilation of strategies for implementing clinical innovations in health and mental health. Med Care Res Rev. 2012;69(2):123–57.

Van Tiem JM, Friberg JE, Wilson JR, Fitzwater L, Blum JM, Panos RJ, et al. Utilized or underutilized: a qualitative analysis of building coherence during early implementation of a Tele-intensive care unit. Telemed J E Health. 2020.

Emerson R, Fretz R, Shaw L. Writing Ethnographic Fieldnotes. 2nd ed; 2011.

Sayre G, Young J. Beyond Open-Ended Questions: Purposeful Interview Guide Development to Elicit Rich, Trustworthy Data HSR&D CyberSeminar: US Departmet of Veterans Affairs; 2018 [Available from: https://www.hsrd.research.va.gov/for_researchers/cyber_seminars/archives/video_archive.cfm? SessionID=2439.

Saldana J. The coding manual for qualitative researchers. 3rd ed. Los Angeles: Sage Publications; 2016.

Morse J, Barrett M, Mayan M, Olson K, Spiers J. Verification Strategies for Establishing Reliability and Validity in Qualitative Research. Int J Qual Methods. 2002;1(2):13–22.

Andersen T. The reflecting team: dialogue and meta-dialogue in clinical work. Fam Process. 1987;26:415–28.

VERBI. MAXQDA 2020 [computer software]. Berlin: Available from maxqda.com ; 2019.

Lietz CA, Langer CL, Furman R. Establishing trustworthiness in qualitative research in social work. Qual Soc Work. 2016;5(4):441–58.

O'Shea AMJ, Fortis S, Vaughan Sarrazin M, Moeckli J, Yarbrough WC, Schacht RH. Outcomes comparison in patients admitted to low complexity rural and urban intensive care units in the veterans health administration. J Crit Care. 2019;49:64–9.

Fortis S, Sarrazin MV, Beck BF, Panos RJ, Reisinger HS. ICU Telemedicine Reduces Interhospital ICU Transfers in the Veterans Health Administration. Chest. 2018;154(1):69-76.

Pun BT, Ely EW. The importance of diagnosing and managing ICU delirium. Chest. 2007;132(2):624–36.

Ingold T. Against soundscape. In: Carlyle A, editor. Autumn leaves: sound and the environment in artistic practice. Paris: Double Entendre; 2007. p. 10–3.

Helmreich S. Listening Against Soundscapes. Anthropol Newsl. 2010;51(9):10.

Hoonakker PLT, Carayon P. Work system barriers and strategies reported by Tele-intensive care unit nurses: a case study. Crit Care Nurs Clin North Am. 2018;30(2):259–71.

Download references

Acknowledgments

The authors acknowledge technical support for transcription and qualitative data processing from Monica Paez, Vu-Thuy Nguyen, Elizabeth Newbury, and Chelsea Hicks. We also wish to express our appreciation for the VA staff who participated in this study to inform the implementation of tele-critical care. Finally, we would like to acknowledge the VA Office of Rural Health for funding the tele-critical care evaluation.

Funding provided by the U.S. Department of Veterans Affairs (VA) Office of Rural Health, Veterans Rural Health Resource Center- Iowa City (Award 14385). Visit www.ruralhealth.va.gov to learn more. Support is also provided by the Health Services Research and Development (HSR&D) Service through the Center for Access and Delivery Research and Evaluation (CADRE) (CIN 13–412). The Department of Veterans Affairs had no role in the analysis or interpretation of data or the decision to report these data in a peer-reviewed journal. The views expressed in this article are those of the authors and do not necessarily reflect the position or policy of the Department of Veterans Affairs or the United States government.

Author information

Authors and affiliations.

VA Office of Rural Health (ORH), Veterans Rural Health Resource Center-Iowa City, Iowa City VA Healthcare System, Iowa City, IA, USA

Jennifer M. Van Tiem, Heather Schacht Reisinger, Julia E. Friberg, Jaime R. Wilson & Jane Moeckli

VA Health Services Research & Development Service, Center for Access and Delivery Research and Evaluation, Iowa City VA Health Care System (152), 601 Highway 6 West, Iowa City, IA, 52246, USA

The Department of Internal Medicine, University of Iowa Carver College of Medicine, Iowa City, IA, USA

Heather Schacht Reisinger

Institute for Clinical and Translational Science, University of Iowa, Iowa City, IA, USA

VISN 10/Cincinnati Tele-CC System, Cincinnati, OH, USA

Lynn Fitzwater & Ralph J. Panos

You can also search for this author in PubMed Google Scholar

Contributions

We have 7 authors. We worked as a research team. The PI for this project was HSR. As such, she provided substantial contributions to the conception and design for data collection; she also revised the paper for important intellectual content. The research team for this project consisted of JVT, JF, and JM. As such, they provided substantial contributions to the design of data collection and acquisition of data, as well as providing revisions to early drafts of the article. JM and JVT contributed to the interpretation of the data through conceptual framing and theoretical expertise during the analysis. JW, LF, and RP served as subject matter experts in the field of critical care and Tele-CC. All authors contributed to the analysis and interpretation of data at various stages, though the analysis for this paper was led by JVT. Every author participated in the revising and drafting of this final manuscript and approved this version for submission for publication. Every author agrees to be accountable for all aspects of the work. All authors have read and approved the manuscript.

Corresponding author

Correspondence to Jennifer M. Van Tiem .

Ethics declarations

Ethics approval and consent to participate.

This research was approved by the University of Iowa Institutional Review Board (IRB # 201311734). Informed consented obtained from study participants was verbal. We provided a written information sheet with the elements of consent to all participants, but did not require their signature. This procedure was approved by our IRB.

Consent for publication

Not applicable.

Competing interests

The authors declare that they have no competing interests.

Additional information

Publisher’s note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Additional file 1:..

Workflow for “Camera Etiquette”

Additional file 2:.

Interview Guides

Rights and permissions

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ . The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Reprints and permissions

About this article

Cite this article.

Van Tiem, J.M., Schacht Reisinger, H., Friberg, J.E. et al. The STS case study: an analysis method for longitudinal qualitative research for implementation science. BMC Med Res Methodol 21 , 27 (2021). https://doi.org/10.1186/s12874-021-01215-y

Download citation

Received : 25 June 2020

Accepted : 22 January 2021

Published : 05 February 2021

DOI : https://doi.org/10.1186/s12874-021-01215-y

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

Longitudinal qualitative research
Science and technology studies
Implementation
Telemedicine
Critical care
Ethnography

BMC Medical Research Methodology

ISSN: 1471-2288

General enquiries: [email protected]

IMAGES

(PDF) The STS case study: an analysis method for longitudinal
PPT
(PDF) Qualitative Research on Software Development: A Longitudinal Case
10 Famous Examples of Longitudinal Studies (2024)
(PDF) Giftedness, Trauma, and Development: A Qualitative, Longitudinal
(PDF) The bereavement experiences of families of potential organ donors

COMMENTS

Developing longitudinal qualitative designs: lessons learned and
Longitudinal qualitative research is distinguished from other qualitative approaches by the way in which time is designed into the research process, making change a key focus for analysis . LQR answers qualitative questions about the lived experience of change, or sometimes stability, over time. ... LQR may be imbedded within case studies ...
Qualitative longitudinal research in health research: a method study
Qualitative longitudinal research (QLR) comprises qualitative studies, with repeated data collection, that focus on the temporality (e.g., time and change) of a phenomenon. ... (17.4%) self-identified both as having a QLR design and following one of the methodological approaches (case study: n = 8; phenomenology: n = 23; grounded theory: ...
Qualitative longitudinal research in health research: a method study
Qualitative longitudinal research (QLR) comprises qualitative studies, with repeated data collection, that focus on the temporality (e.g., time and change) of a phenomenon. The use of QLR is increasing in health research since many topics within health involve change (e.g., progressive illness, rehabilitation). A method study can provide an insightful understanding of the use, trends and ...
The STS case study: an analysis method for longitudinal qualitative
We argue that this form of case study (termed an "STS case study") is a novel form of longitudinal qualitative research (LQR) that allows implementors to understand and impact the implementation process by distilling a lot of diverse data [22, 23] into summaries and categories that make it possible to follow and understand change over time ...
Qualitative Longitudinal Research
Qualitative longitudinal research (QLR) is an emergent research methodology that has been used to study the change, short- and long-term impacts, and probable causality resulting from a particular event, phenomenon, policy, and/or intervention in a continuous fashion through multiple waves of data collection over a substantial amount of time (Holland et al., 2006; Neale, 2018; Thomson ...
Longitudinal Qualitative Methods in Health Behavior and Nursing
Longitudinal qualitative research (LQR) is an emerging methodology in health behavior and nursing research—fields focused on generating evidence to support nursing practices as well as programs, and policies promoting healthy behaviors (Glanz et al., 2008; Polit & Beck, 2017).Because human experiences are rarely comprised of concrete, time-limited events, but evolve and change across time ...
How to … do longitudinal qualitative research
Taking a longitudinal qualitative approach to such research can provide valuable insights. In this article, we present some longitudinal qualitative methods to support researchers interested in getting started with this type of research. We discuss what longitudinal qualitative approaches offer, consider the challenges and suggest how to go ...
Case Study Methodology of Qualitative Research: Key Attributes and
A case study is one of the most commonly used methodologies of social research. This article attempts to look into the various dimensions of a case study research strategy, the different epistemological strands which determine the particular case study type and approach adopted in the field, discusses the factors which can enhance the effectiveness of a case study research, and the debate ...
Longitudinal Study
Revised on June 22, 2023. In a longitudinal study, researchers repeatedly examine the same individuals to detect any changes that might occur over a period of time. Longitudinal studies are a type of correlational research in which researchers observe and collect data on a number of variables without trying to influence those variables.
Longitudinal Qualitative Research
But longitudinal qualitative research, unlike much longitudinal quantitative research, is not restricted to the use of identical questions. We again note Armstrong and Hamilton ( 2013 ) whose longitudinal study of college students was projected and well-planned, but whose serial interviews evolved, even across the span of 4 years, such that ...
Storying qualitative longitudinal research: sequence, voice and motif
Thomson R (2007) The qualitative longitudinal case history: practical, methodological and ethical reflections. Social Policy and Society 6(4 ... selves and family dynamics. In: Thomson R (ed.) (2010) Intensity and Insight: Qualitative Longitudinal Research as a Route into the Psychosocial. Timescapes Working Paper 3. Google Scholar. Thomson R ...
How to analyse longitudinal data from multiple sources in qualitative
Longitudinal qualitative research is starting to be used in applied health research, having been popular in social research for several decades. There is potential for a large volume of complex data to be captured, over a span of months or years across several different methods. ... The qualitative longitudinal case history: practical ...
The STS case study: an analysis method for longitudinal qualitative
STS case-studies contribute to the literature on longitudinal qualitive research (LQR) in implementation science, including pen portraits and periodic reflections. Anchored by the material, the heterogeneity of an STS case-study generates questions and encourages exploring differences. Begun early e …
Value, challenges and practical considerations when designing
Qualitative longitudinal design has a long tradition in a variety of social science disciplines and is increasingly used in applied healthcare research, including family medicine. While there are many definitions of longitudinal qualitative research (LQR), its most common characteristics are multiple data collection points and its focus on temporality, which prioritise the study of change and ...
Developing longitudinal qualitative designs: lessons learned and
Longitudinal qualitative methods are becoming increasingly used in the health service research, but the method and challenges particular to health care settings are not well described in the literature.We reflect on the strategies used in a longitudinal qualitative study to explore the experience of symptoms in cancer patients and their carers, following participants from diagnosis for twelve ...
Longitudinal qualitative case study
This chapter reports the methods and findings from the longitudinal qualitative case study. In line with contemporary process evaluation guidance, this is an in-depth, pre-planned and theoretically driven longitudinal, comparative, qualitative case study to support understanding of two complex interventions that aim to reduce UI in women.53 In this chapter, we refer to the interview ...
Nurturing Longitudinal Samples 2.0
Longitudinal research designs offer many strengths when compared to much more commonly used cross-sectional designs. The basic definition of longitudinal research designs requires multiple measurements over time, allowing researchers to investigate issues related to the speed, sequence, direction, and duration of changes in a wide range of outcomes ranging from biological and clinical measures ...
Giftedness, Trauma, and Development: A Qualitative, Longitudinal Case Study
A qualitative, longitudinal, phenomenological case study explored how a gifted female experienced various life events and aspects of development during adolescence and young adulthood (ages 15 ...
Qualitative Research on Software Development: A Longitudinal Case Study
A Longitudinal Case Study Methodology. Laurie M cLeod, Stephen G. MacDonell and Bill Doolin. Auckland University of Technology. Private Bag 92006, Auckland 1142, New Zealand. [email protected] ...
"Because people don't know what it is, they don't really know it exists
Dyscalculia is defined as a specific learning difference or neurodiversity. Despite a move within postgraduate medical education (PGME) towards promoting inclusivity and addressing differential attainment, dyscalculia remains an unexplored area. Using an interpretivist, constructivist, qualitative methodology, this scoping study explores PGME educators' attitudes, understanding and perceived ...
Utilizing a Matrix Approach to Analyze Qualitative Longitudinal
Qualitative Longitudinal Research. QLR is considered an "evolving methodology" that is rich and helpful in revealing an in-depth understanding of the evolution of people's lives and changes over time (Neale, 2016).It is unique in that it combines two methodologies, a longitudinal component with a qualitative lens (Neale, 2016).QLR has been especially useful for studies that investigate ...
Making Sense of Making Sense of Time: Longitudinal Narrative Research
In the special issue of Qualitative Research, different researchers apply discrete approaches to make sense of narrative stability and change in a set of case-studies from the Foley Longitudinal Study (Dunlop, 2019; Fivush et al., 2019; McLean et al., 2019; Pasupathi & Wainryb, 2019; Singer, 2019). Researchers and articles with separate ...
Longitudinal Qualitative Methods in Health Behavior and Nursing
Introduction. Longitudinal qualitative research (LQR) is an emerging methodology in health behavior and nursing research—fields focused on generating evidence to support nursing practices as well as programs, and policies promoting healthy behaviors (Glanz et al., 2008; Polit & Beck, 2017).Because human experiences are rarely comprised of concrete, time-limited events, but evolve and change ...
Strengthening Theory-Methods-Data Links
Longitudinal analysis in strategic management. In D. KetchenD. Bergh ... The tumult over transparency: Decoupling transparency from replication in establishing trustworthy qualitative research. Administrative Science Quarterly, 65: 1-19. ... Case study research: Design and methods. Newbury Park, CA: SAGE.
The STS case study: an analysis method for longitudinal qualitative
Ethnographic approaches offer a method and a way of thinking about implementation. This manuscript applies a specific case study method to describe the impact of the longitudinal interplay between implementation stakeholders. Growing out of science and technology studies (STS) and drawing on the latent archaeological sensibilities implied by ethnographic methods, the STS case-study is a tool ...

Have a language expert improve your writing

Longitudinal Study | Definition, Approaches & Examples

Table of contents

Here's why students love Scribbr's proofreading services

Using data from other sources

Collecting your own data

Disadvantages

Prevent plagiarism. Run a free check.

Cite this Scribbr article

Is this article helpful?

Lauren Thomas

Longitudinal Qualitative Research

Access this chapter

Similar content being viewed by others

How to analyse longitudinal data from multiple sources in qualitative health research: the pen portrait analytic technique

Qualitative Longitudinal Research

Synthesis: Combining Methods for the Analysis of Vulnerability Processes Across the Life Course

Author information

Corresponding author

Editor information

Rights and permissions

Copyright information

About this chapter

Download citation

Share this chapter

Save citation to file

Add to My Bibliography

The STS case study: an analysis method for longitudinal qualitative research for implementation science

Conflict of interest statement

Similar articles

Publication types

Related information

LinkOut - more resources

Other Literature Sources

Value, challenges and practical considerations when designing, conducting and analysing a longitudinal qualitative study in family medicine

Step 1: deciding on the length of data collection and timing and number of interviews

Length of data collection

Timing and spacing of interviews

Approach 1: data collection around researcher-led events

Approach 2: data collection around participant-led events

Approach 3: data collection based on pre-established, regular intervals

Number of interviews

Step 2: planning recruitment: attrition versus oversampling

Step 3: approaching data collection: asking the same or different questions

Step 4: planning and conducting the analysis, and writing-up findings

Aims and questions guiding LQR analysis

Approaches to analysis

Writing up the findings

Practical considerations

Issues of confidentiality and consent

Establishing, maintaining and ending research relationships

Emotional implications for participants and researchers

Ethical conduct must be iterative and reflexive

Exploring views and experiences of a variety of participants over time

Following participants through important transitions

Studying implementation of new practices, processes or interventions

Exploring the importance of historical change and/or the macro context on individuals’ lives

Developing a deeper understanding of phenomena under study

“Because people don’t know what it is, they don’t really know it exists” : a qualitative study of postgraduate medical educators’ perceptions of dyscalculia

Conclusions

Context for medical education

Educational challenges, learning needs and local context

Identifying attitudes and understanding

Ethical considerations

Reflexivity

Experience shapes educator knowledge, understanding and attitudes

Greater educator support and training regarding dyscalculia is needed

Coping strategies are important to better understand

Identification is key but not fully enabling

The PGME clinical context may limit support

Uncertainty regarding reasonable adjustments need addressing

Limitations

Data availability

Abbreviations

Acknowledgements

Author information

Contributions

Corresponding author

Ethics declarations

Consent for publication