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• Descriptive Research | Definition, Types, Methods & Examples

Descriptive Research | Definition, Types, Methods & Examples

Published on May 15, 2019 by Shona McCombes . Revised on June 22, 2023.

Descriptive research aims to accurately and systematically describe a population, situation or phenomenon. It can answer what , where , when and how   questions , but not why questions.

A descriptive research design can use a wide variety of research methods  to investigate one or more variables . Unlike in experimental research , the researcher does not control or manipulate any of the variables, but only observes and measures them.

Table of contents

When to use a descriptive research design, descriptive research methods, other interesting articles.

Descriptive research is an appropriate choice when the research aim is to identify characteristics, frequencies, trends, and categories.

It is useful when not much is known yet about the topic or problem. Before you can research why something happens, you need to understand how, when and where it happens.

Descriptive research question examples

• How has the Amsterdam housing market changed over the past 20 years?
• Do customers of company X prefer product X or product Y?
• What are the main genetic, behavioural and morphological differences between European wildcats and domestic cats?
• What are the most popular online news sources among under-18s?
• How prevalent is disease A in population B?

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Descriptive research is usually defined as a type of quantitative research , though qualitative research can also be used for descriptive purposes. The research design should be carefully developed to ensure that the results are valid and reliable .

Survey research allows you to gather large volumes of data that can be analyzed for frequencies, averages and patterns. Common uses of surveys include:

• Describing the demographics of a country or region
• Gauging public opinion on political and social topics
• Evaluating satisfaction with a company’s products or an organization’s services

Observations

Observations allow you to gather data on behaviours and phenomena without having to rely on the honesty and accuracy of respondents. This method is often used by psychological, social and market researchers to understand how people act in real-life situations.

Observation of physical entities and phenomena is also an important part of research in the natural sciences. Before you can develop testable hypotheses , models or theories, it’s necessary to observe and systematically describe the subject under investigation.

Case studies

A case study can be used to describe the characteristics of a specific subject (such as a person, group, event or organization). Instead of gathering a large volume of data to identify patterns across time or location, case studies gather detailed data to identify the characteristics of a narrowly defined subject.

Rather than aiming to describe generalizable facts, case studies often focus on unusual or interesting cases that challenge assumptions, add complexity, or reveal something new about a research problem .

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

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McCombes, S. (2023, June 22). Descriptive Research | Definition, Types, Methods & Examples. Scribbr. Retrieved September 10, 2024, from https://www.scribbr.com/methodology/descriptive-research/

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Understanding Descriptive Research Designs and Methods

Siedlecki, Sandra L. PhD, RN, APRN-CNS, FAAN

Author Affiliation: Senior Nurse Scientist and Clinical Nurse Specialist, Office of Nursing Research & Innovation, Nursing Institute, Cleveland Clinic, Ohio.

The author reports no conflicts of interest.

Correspondence: Sandra L. Siedlecki, PhD, RN, APRN-CNS, 3271 Stillwater Dr, Medina, OH 44256 ( [email protected] ).

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Descriptive Research and Qualitative Research

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• Eunsook T. Koh 2 &
• Willis L. Owen 2  

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Descriptive research is a study of status and is widely used in education, nutrition, epidemiology, and the behavioral sciences. Its value is based on the premise that problems can be solved and practices improved through observation, analysis, and description. The most common descriptive research method is the survey, which includes questionnaires, personal interviews, phone surveys, and normative surveys. Developmental research is also descriptive. Through cross-sectional and longitudinal studies, researchers investigate the interaction of diet (e.g., fat and its sources, fiber and its sources, etc.) and life styles (e.g., smoking, alcohol drinking, etc.) and of disease (e.g., cancer, coronary heart disease) development. Observational research and correlational studies constitute other forms of descriptive research. Correlational studies determine and analyze relationships between variables as well as generate predictions. Descriptive research generates data, both qualitative and quantitative, that define the state of nature at a point in time. This chapter discusses some characteristics and basic procedures of the various types of descriptive research.

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Koh, E.T., Owen, W.L. (2000). Descriptive Research and Qualitative Research. In: Introduction to Nutrition and Health Research. Springer, Boston, MA. https://doi.org/10.1007/978-1-4615-1401-5_12

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• Knowledge Base
• Methodology
• Descriptive Research Design | Definition, Methods & Examples

Descriptive Research Design | Definition, Methods & Examples

Published on 5 May 2022 by Shona McCombes . Revised on 10 October 2022.

Descriptive research aims to accurately and systematically describe a population, situation or phenomenon. It can answer what , where , when , and how   questions , but not why questions.

A descriptive research design can use a wide variety of research methods  to investigate one or more variables . Unlike in experimental research , the researcher does not control or manipulate any of the variables, but only observes and measures them.

Table of contents

When to use a descriptive research design, descriptive research methods.

Descriptive research is an appropriate choice when the research aim is to identify characteristics, frequencies, trends, and categories.

It is useful when not much is known yet about the topic or problem. Before you can research why something happens, you need to understand how, when, and where it happens.

• How has the London housing market changed over the past 20 years?
• Do customers of company X prefer product Y or product Z?
• What are the main genetic, behavioural, and morphological differences between European wildcats and domestic cats?
• What are the most popular online news sources among under-18s?
• How prevalent is disease A in population B?

Prevent plagiarism, run a free check.

Descriptive research is usually defined as a type of quantitative research , though qualitative research can also be used for descriptive purposes. The research design should be carefully developed to ensure that the results are valid and reliable .

Survey research allows you to gather large volumes of data that can be analysed for frequencies, averages, and patterns. Common uses of surveys include:

• Describing the demographics of a country or region
• Gauging public opinion on political and social topics
• Evaluating satisfaction with a company’s products or an organisation’s services

Observations

Observations allow you to gather data on behaviours and phenomena without having to rely on the honesty and accuracy of respondents. This method is often used by psychological, social, and market researchers to understand how people act in real-life situations.

Observation of physical entities and phenomena is also an important part of research in the natural sciences. Before you can develop testable hypotheses , models, or theories, it’s necessary to observe and systematically describe the subject under investigation.

Case studies

A case study can be used to describe the characteristics of a specific subject (such as a person, group, event, or organisation). Instead of gathering a large volume of data to identify patterns across time or location, case studies gather detailed data to identify the characteristics of a narrowly defined subject.

Rather than aiming to describe generalisable facts, case studies often focus on unusual or interesting cases that challenge assumptions, add complexity, or reveal something new about a research problem .

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McCombes, S. (2022, October 10). Descriptive Research Design | Definition, Methods & Examples. Scribbr. Retrieved 9 September 2024, from https://www.scribbr.co.uk/research-methods/descriptive-research-design/

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What is Descriptive Research? Definition, Methods, Types and Examples

Descriptive research is a methodological approach that seeks to depict the characteristics of a phenomenon or subject under investigation. In scientific inquiry, it serves as a foundational tool for researchers aiming to observe, record, and analyze the intricate details of a particular topic. This method provides a rich and detailed account that aids in understanding, categorizing, and interpreting the subject matter.

Descriptive research design is widely employed across diverse fields, and its primary objective is to systematically observe and document all variables and conditions influencing the phenomenon.

After this descriptive research definition, let’s look at this example. Consider a researcher working on climate change adaptation, who wants to understand water management trends in an arid village in a specific study area. She must conduct a demographic survey of the region, gather population data, and then conduct descriptive research on this demographic segment. The study will then uncover details on “what are the water management practices and trends in village X.” Note, however, that it will not cover any investigative information about “why” the patterns exist.

Table of Contents

What is descriptive research?

If you’ve been wondering “What is descriptive research,” we’ve got you covered in this post! In a nutshell, descriptive research is an exploratory research method that helps a researcher describe a population, circumstance, or phenomenon. It can help answer what , where , when and how questions, but not why questions. In other words, it does not involve changing the study variables and does not seek to establish cause-and-effect relationships.

Importance of descriptive research

Now, let’s delve into the importance of descriptive research. This research method acts as the cornerstone for various academic and applied disciplines. Its primary significance lies in its ability to provide a comprehensive overview of a phenomenon, enabling researchers to gain a nuanced understanding of the variables at play. This method aids in forming hypotheses, generating insights, and laying the groundwork for further in-depth investigations. The following points further illustrate its importance:

Provides insights into a population or phenomenon: Descriptive research furnishes a comprehensive overview of the characteristics and behaviors of a specific population or phenomenon, thereby guiding and shaping the research project.

Offers baseline data: The data acquired through this type of research acts as a reference for subsequent investigations, laying the groundwork for further studies.

Allows validation of sampling methods: Descriptive research validates sampling methods, aiding in the selection of the most effective approach for the study.

Helps reduce time and costs: It is cost-effective and time-efficient, making this an economical means of gathering information about a specific population or phenomenon.

Ensures replicability: Descriptive research is easily replicable, ensuring a reliable way to collect and compare information from various sources.

When to use descriptive research design?

Determining when to use descriptive research depends on the nature of the research question. Before diving into the reasons behind an occurrence, understanding the how, when, and where aspects is essential. Descriptive research design is a suitable option when the research objective is to discern characteristics, frequencies, trends, and categories without manipulating variables. It is therefore often employed in the initial stages of a study before progressing to more complex research designs. To put it in another way, descriptive research precedes the hypotheses of explanatory research. It is particularly valuable when there is limited existing knowledge about the subject.

Some examples are as follows, highlighting that these questions would arise before a clear outline of the research plan is established:

• In the last two decades, what changes have occurred in patterns of urban gardening in Mumbai?
• What are the differences in climate change perceptions of farmers in coastal versus inland villages in the Philippines?

Characteristics of descriptive research

Coming to the characteristics of descriptive research, this approach is characterized by its focus on observing and documenting the features of a subject. Specific characteristics are as below.

• Quantitative nature: Some descriptive research types involve quantitative research methods to gather quantifiable information for statistical analysis of the population sample.
• Qualitative nature: Some descriptive research examples include those using the qualitative research method to describe or explain the research problem.
• Observational nature: This approach is non-invasive and observational because the study variables remain untouched. Researchers merely observe and report, without introducing interventions that could impact the subject(s).
• Cross-sectional nature: In descriptive research, different sections belonging to the same group are studied, providing a “snapshot” of sorts.
• Springboard for further research: The data collected are further studied and analyzed using different research techniques. This approach helps guide the suitable research methods to be employed.

Types of descriptive research

There are various descriptive research types, each suited to different research objectives. Take a look at the different types below.

• Surveys: This involves collecting data through questionnaires or interviews to gather qualitative and quantitative data.
• Observational studies: This involves observing and collecting data on a particular population or phenomenon without influencing the study variables or manipulating the conditions. These may be further divided into cohort studies, case studies, and cross-sectional studies:
• Cohort studies: Also known as longitudinal studies, these studies involve the collection of data over an extended period, allowing researchers to track changes and trends.
• Case studies: These deal with a single individual, group, or event, which might be rare or unusual.
• Cross-sectional studies : A researcher collects data at a single point in time, in order to obtain a snapshot of a specific moment.
• Focus groups: In this approach, a small group of people are brought together to discuss a topic. The researcher moderates and records the group discussion. This can also be considered a “participatory” observational method.
• Descriptive classification: Relevant to the biological sciences, this type of approach may be used to classify living organisms.

Descriptive research methods

Several descriptive research methods can be employed, and these are more or less similar to the types of approaches mentioned above.

• Surveys: This method involves the collection of data through questionnaires or interviews. Surveys may be done online or offline, and the target subjects might be hyper-local, regional, or global.
• Observational studies: These entail the direct observation of subjects in their natural environment. These include case studies, dealing with a single case or individual, as well as cross-sectional and longitudinal studies, for a glimpse into a population or changes in trends over time, respectively. Participatory observational studies such as focus group discussions may also fall under this method.

Researchers must carefully consider descriptive research methods, types, and examples to harness their full potential in contributing to scientific knowledge.

Examples of descriptive research

Now, let’s consider some descriptive research examples.

• In social sciences, an example could be a study analyzing the demographics of a specific community to understand its socio-economic characteristics.
• In business, a market research survey aiming to describe consumer preferences would be a descriptive study.
• In ecology, a researcher might undertake a survey of all the types of monocots naturally occurring in a region and classify them up to species level.

These examples showcase the versatility of descriptive research across diverse fields.

Advantages of descriptive research

There are several advantages to this approach, which every researcher must be aware of. These are as follows:

• Owing to the numerous descriptive research methods and types, primary data can be obtained in diverse ways and be used for developing a research hypothesis .
• It is a versatile research method and allows flexibility.
• Detailed and comprehensive information can be obtained because the data collected can be qualitative or quantitative.
• It is carried out in the natural environment, which greatly minimizes certain types of bias and ethical concerns.
• It is an inexpensive and efficient approach, even with large sample sizes

Disadvantages of descriptive research

On the other hand, this design has some drawbacks as well:

• It is limited in its scope as it does not determine cause-and-effect relationships.
• The approach does not generate new information and simply depends on existing data.
• Study variables are not manipulated or controlled, and this limits the conclusions to be drawn.
• Descriptive research findings may not be generalizable to other populations.
• Finally, it offers a preliminary understanding rather than an in-depth understanding.

To reiterate, the advantages of descriptive research lie in its ability to provide a comprehensive overview, aid hypothesis generation, and serve as a preliminary step in the research process. However, its limitations include a potential lack of depth, inability to establish cause-and-effect relationships, and susceptibility to bias.

Frequently asked questions

When should researchers conduct descriptive research.

Descriptive research is most appropriate when researchers aim to portray and understand the characteristics of a phenomenon without manipulating variables. It is particularly valuable in the early stages of a study.

What is the difference between descriptive and exploratory research?

Descriptive research focuses on providing a detailed depiction of a phenomenon, while exploratory research aims to explore and generate insights into an issue where little is known.

What is the difference between descriptive and experimental research?

Descriptive research observes and documents without manipulating variables, whereas experimental research involves intentional interventions to establish cause-and-effect relationships.

Is descriptive research only for social sciences?

No, various descriptive research types may be applicable to all fields of study, including social science, humanities, physical science, and biological science.

How important is descriptive research?

The importance of descriptive research lies in its ability to provide a glimpse of the current state of a phenomenon, offering valuable insights and establishing a basic understanding. Further, the advantages of descriptive research include its capacity to offer a straightforward depiction of a situation or phenomenon, facilitate the identification of patterns or trends, and serve as a useful starting point for more in-depth investigations. Additionally, descriptive research can contribute to the development of hypotheses and guide the formulation of research questions for subsequent studies.

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Descriptive Research 101: Definition, Methods and Examples

Parvathi Vijayamohan

Last Updated: 16 July 2024

10 min read

Table Of Contents

• Descriptive Research 101: The Definitive Guide

What is Descriptive Research?

• Key Characteristics
• Observation
• Case Studies
• Types of Descriptive Research
• Question Examples
• Real-World Examples

Tips to Excel at Descriptive Research

• More Interesting Reads

Imagine you are a detective called to a crime scene. Your job is to study the scene and report whatever you find: whether that’s the half-smoked cigarette on the table or the large “RACHE” written in blood on the wall. That, in a nutshell, is  descriptive research .

Researchers often need to do descriptive research on a problem before they attempt to solve it. So in this guide, we’ll take you through:

• What is descriptive research + its characteristics
• Descriptive research methods
• Types of descriptive research
• Descriptive research examples
• Tips to excel at the descriptive method

Click to jump to the section that interests you.

Let’s begin by going through what descriptive studies can and cannot do.

Definition: As its name says, descriptive research  describes  the characteristics of the problem, phenomenon, situation, or group under study.

So the goal of all descriptive studies is to  explore  the background, details, and existing patterns in the problem to fully understand it. In other words, preliminary research.

However, descriptive research can be both  preliminary and conclusive . You can use the data from a descriptive study to make reports and get insights for further planning.

What descriptive research isn’t: Descriptive research finds the  what/when/where  of a problem, not the  why/how .

Because of this, we can’t use the descriptive method to explore cause-and-effect relationships where one variable (like a person’s job role) affects another variable (like their monthly income).

Key Characteristics of Descriptive Research

• Answers the “what,” “when,” and “where”  of a research problem. For this reason, it is popularly used in  market research ,  awareness surveys , and  opinion polls .
• Sets the stage  for a research problem. As an early part of the research process, descriptive studies help you dive deeper into the topic.
• Opens the door  for further research. You can use descriptive data as the basis for more profound research, analysis and studies.
• Qualitative and quantitative research . It is possible to get a balanced mix of numerical responses and open-ended answers from the descriptive method.
• No control or interference with the variables . The researcher simply observes and reports on them. However, specific research software has filters that allow her to zoom in on one variable.
• Done in natural settings . You can get the best results from descriptive research by talking to people, surveying them, or observing them in a suitable environment. For example, suppose you are a website beta testing an app feature. In that case, descriptive research invites users to try the feature, tracking their behavior and then asking their opinions .
• Can be applied to many research methods and areas. Examples include healthcare, SaaS, psychology, political studies, education, and pop culture.

Descriptive Research Methods: The Top Three You Need to Know!

In short, survey research is a brief interview or conversation with a set of prepared questions about a topic. So you create a questionnaire, share it, and analyze the data you collect for further action.

Read more : The difference between surveys vs questionnaires

• Surveys can be hyper-local, regional, or global, depending on your objectives.
• Share surveys in-person, offline, via SMS, email, or QR codes – so many options!
• Easy to automate if you want to conduct many surveys over a period.

FYI: If you’re looking for the perfect tool to conduct descriptive research, SurveySparrow’s got you covered. Our AI-powered text and sentiment analysis help you instantly capture detailed insights for your studies.

With 1,000+ customizable (and free) survey templates , 20+ question types, and 1500+ integrations , SurveySparrow makes research super-easy.

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Product Market Research Survey Template

Preview Template

2. Observation

The observational method is a type of descriptive research in which you, the researcher, observe ongoing behavior.

Now, there are several (non-creepy) ways you can observe someone. In fact, observational research has three main approaches:

• Covert observation: In true spy fashion, the researcher mixes in with the group undetected or observes from a distance.
• Overt observation : The researcher identifies himself as a researcher – “The name’s Bond. J. Bond.” – and explains the purpose of the study.
• Participatory observation : The researcher participates in what he is observing to understand his topic better.
• Observation is one of the most accurate ways to get data on a subject’s behavior in a natural setting.
• You don’t need to rely on people’s willingness to share information.
• Observation is a universal method that can be applied to any area of research.

3. Case Studies

In the case study method, you do a detailed study of a specific group, person, or event over a period.

This brings us to a frequently asked question: “What’s the difference between case studies and longitudinal studies?”

A case study will go  very in-depth into the subject with one-on-one interviews, observations, and archival research. They are also qualitative, though sometimes they will use numbers and stats.

An example of longitudinal research would be a study of the health of night shift employees vs. general shift employees over a decade. An example of a case study would involve in-depth interviews with Casey, an assistant director of nursing who’s handled the night shift at the hospital for ten years now.

• Due to the focus on a few people, case studies can give you a tremendous amount of information.
• Because of the time and effort involved, a case study engages both researchers and participants.
• Case studies are helpful for ethically investigating unusual, complex, or challenging subjects. An example would be a study of the habits of long-term cocaine users.

7 Types of Descriptive Research

Descriptive Research Question Examples

• How have teen social media habits changed in 10 years?
• What causes high employee turnover in tech?
• How do urban and rural diets differ in India?
• What are consumer preferences for electric vs. gasoline cars in Germany?
• How common is smartphone addiction among UK college students?
• What drives customer satisfaction in banking?
• How have adolescent mental health issues changed in 15 years?
• What leisure activities are popular among retirees in Japan?
• How do commute times vary in US metro areas?
• What makes e-commerce websites successful?

Descriptive Research: Real-World Examples To Build Your Next Study

1. case study: airbnb’s growth strategy.

In an excellent case study, Tam Al Saad, Principal Consultant, Strategy + Growth at Webprofits, deep dives into how Airbnb attracted and retained 150 million users .

“What Airbnb offers isn’t a cheap place to sleep when you’re on holiday; it’s the opportunity to experience your destination as a local would. It’s the chance to meet the locals, experience the markets, and find non-touristy places.

Sure, you can visit the Louvre, see Buckingham Palace, and climb the Empire State Building, but you can do it as if it were your hometown while staying in a place that has character and feels like a home.” – Tam al Saad, Principal Consultant, Strategy + Growth at Webprofits

2. Observation – Better Tech Experiences for the Elderly

We often think that our elders are so hopeless with technology. But we’re not getting any younger either, and tech is changing at a hair trigger! This article by Annemieke Hendricks shares a wonderful example where researchers compare the levels of technological familiarity between age groups and how that influences usage.

“It is generally assumed that older adults have difficulty using modern electronic devices, such as mobile telephones or computers. Because this age group is growing in most countries, changing products and processes to adapt to their needs is increasingly more important. “ – Annemieke Hendricks, Marketing Communication Specialist, Noldus

3. Surveys – Decoding Sleep with SurveySparrow

SRI International (formerly Stanford Research Institute) – an independent, non-profit research center – wanted to investigate the impact of stress on an adolescent’s sleep. To get those insights, two actions were essential: tracking sleep patterns through wearable devices and sending surveys at a pre-set time – the pre-sleep period.

“With SurveySparrow’s recurring surveys feature, SRI was able to share engaging surveys with their participants exactly at the time they wanted and at the frequency they preferred.”

Read more about this project : How SRI International decoded sleep patterns with SurveySparrow

1: Answer the six Ws –

• Who should we consider?
• What information do we need?
• When should we collect the information?
• Where should we collect the information?
• Why are we obtaining the information?
• Way to collect the information

#2: Introduce and explain your methodological approach

#3: Describe your methods of data collection and/or selection.

#4: Describe your methods of analysis.

#5: Explain the reasoning behind your choices.

#6: Collect data.

#7: Analyze the data. Use software to speed up the process and reduce overthinking and human error.

#8: Report your conclusions and how you drew the results.

Wrapping Up

Whether it’s social media habits, consumer preferences, or mental health trends, descriptive research provides a clear snapshot into what people actually think.

If you want to know more about feedback methodology, or research, check out some of our other articles below.

👉 Desk Research 101: Definition, Methods, and Examples

👉 Exploratory Research: Your Guide to Unraveling Insights

👉 Design Research: Types, Methods, and Importance

Content marketer at SurveySparrow.

Parvathi is a sociologist turned marketer. After 6 years as a copywriter, she pivoted to B2B, diving into growth marketing for SaaS. Now she uses content and conversion optimization to fuel growth - focusing on CX, reputation management and feedback methodology for businesses.

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What is Descriptive Research and How is it Used?

Introduction

What does descriptive research mean, why would you use a descriptive research design, what are the characteristics of descriptive research, examples of descriptive research, what are the data collection methods in descriptive research, how do you analyze descriptive research data, ensuring validity and reliability in the findings.

Conducting descriptive research offers researchers a way to present phenomena as they naturally occur. Rooted in an open-ended and non-experimental nature, this type of research focuses on portraying the details of specific phenomena or contexts, helping readers gain a clearer understanding of topics of interest.

From businesses gauging customer satisfaction to educators assessing classroom dynamics, the data collected from descriptive research provides invaluable insights across various fields.

This article aims to illuminate the essence, utility, characteristics, and methods associated with descriptive research, guiding those who wish to harness its potential in their respective domains.

At its core, descriptive research refers to a systematic approach used by researchers to collect, analyze, and present data about real-life phenomena to describe it in its natural context. It primarily aims to describe what exists, based on empirical observations .

Unlike experimental research, where variables are manipulated to observe outcomes, descriptive research deals with the "as-is" scenario to facilitate further research by providing a framework or new insights on which continuing studies can build.

Definition of descriptive research

Descriptive research is defined as a research method that observes and describes the characteristics of a particular group, situation, or phenomenon.

The goal is not to establish cause and effect relationships but rather to provide a detailed account of the situation.

The difference between descriptive and exploratory research

While both descriptive and exploratory research seek to provide insights into a topic or phenomenon, they differ in their focus. Exploratory research is more about investigating a topic to develop preliminary insights or to identify potential areas of interest.

In contrast, descriptive research offers detailed accounts and descriptions of the observed phenomenon, seeking to paint a full picture of what's happening.

The evolution of descriptive research in academia

Historically, descriptive research has played a foundational role in numerous academic disciplines. Anthropologists, for instance, used this approach to document cultures and societies. Psychologists have employed it to capture behaviors, emotions, and reactions.

Over time, the method has evolved, incorporating technological advancements and adapting to contemporary needs, yet its essence remains rooted in describing a phenomenon or setting as it is.

Descriptive research serves as a cornerstone in the research landscape for its ability to provide a detailed snapshot of life. Its unique qualities and methods make it an invaluable method for various research purposes. Here's why:

Benefits of obtaining a clear picture

Descriptive research captures the present state of phenomena, offering researchers a detailed reflection of situations. This unaltered representation is crucial for sectors like marketing, where understanding current consumer behavior can shape future strategies.

Facilitating data interpretation

Given its straightforward nature, descriptive research can provide data that's easier to interpret, both for researchers and their audiences. Rather than analyzing complex statistical relationships among variables, researchers present detailed descriptions of their qualitative observations . Researchers can engage in in depth analysis relating to their research question , but audiences can also draw insights from their own interpretations or reflections on potential underlying patterns.

Enhancing the clarity of the research problem

By presenting things as they are, descriptive research can help elucidate ambiguous research questions. A well-executed descriptive study can shine light on overlooked aspects of a problem, paving the way for further investigative research.

Addressing practical problems

In real-world scenarios, it's not always feasible to manipulate variables or set up controlled experiments. For instance, in social sciences, understanding cultural norms without interference is paramount. Descriptive research allows for such non-intrusive insights, ensuring genuine understanding.

Building a foundation for future research

Often, descriptive studies act as stepping stones for more complex research endeavors. By establishing baseline data and highlighting patterns, they create a platform upon which more intricate hypotheses can be built and tested in subsequent studies.

Descriptive research is distinguished by a set of hallmark characteristics that set it apart from other research methodologies . Recognizing these features can help researchers effectively design, implement , and interpret descriptive studies.

Specificity in the research question

As with all research, descriptive research starts with a well-defined research question aiming to detail a particular phenomenon. The specificity ensures that the study remains focused on gathering relevant data without unnecessary deviations.

Focus on the present situation

While some research methods aim to predict future trends or uncover historical truths, descriptive research is predominantly concerned with the present. It seeks to capture the current state of affairs, such as understanding today's consumer habits or documenting a newly observed phenomenon.

Standardized and structured methodology

To ensure credibility and consistency in results, descriptive research often employs standardized methods. Whether it's using a fixed set of survey questions or adhering to specific observation protocols, this structured approach ensures that data is collected uniformly, making it easier to compare and analyze.

Non-manipulative approach in observation

One of the standout features of descriptive research is its non-invasive nature. Researchers observe and document without influencing the research subject or the environment. This passive stance ensures that the data gathered is a genuine reflection of the phenomenon under study.

Replicability and consistency in results

Due to its structured methodology, findings from descriptive research can often be replicated in different settings or with different samples. This consistency adds to the credibility of the results, reinforcing the validity of the insights drawn from the study.

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Numerous fields and sectors conduct descriptive research for its versatile and detailed nature. Through its focus on presenting things as they naturally occur, it provides insights into a myriad of scenarios. Here are some tangible examples from diverse domains:

Conducting market research

Businesses often turn to data analysis through descriptive research to understand the demographics of their target market. For instance, a company launching a new product might survey potential customers to understand their age, gender, income level, and purchasing habits, offering valuable data for targeted marketing strategies.

Evaluating employee behaviors

Organizations rely on descriptive research designs to assess the behavior and attitudes of their employees. By conducting observations or surveys , companies can gather data on workplace satisfaction, collaboration patterns, or the impact of a new office layout on productivity.

Understanding consumer preferences

Brands aiming to understand their consumers' likes and dislikes often use descriptive research. By observing shopping behaviors or conducting product feedback surveys , they can gauge preferences and adjust their offerings accordingly.

Documenting historical patterns

Historians and anthropologists employ descriptive research to identify patterns through analysis of events or cultural practices. For instance, a historian might detail the daily life in a particular era, while an anthropologist might document rituals and ceremonies of a specific tribe.

Assessing student performance

Educational researchers can utilize descriptive studies to understand the effectiveness of teaching methodologies. By observing classrooms or surveying students, they can measure data trends and gauge the impact of a new teaching technique or curriculum on student engagement and performance.

Descriptive research methods aim to authentically represent situations and phenomena. These techniques ensure the collection of comprehensive and reliable data about the subject of interest.

The most appropriate descriptive research method depends on the research question and resources available for your research study.

Surveys and questionnaires

One of the most familiar tools in the researcher's arsenal, surveys and questionnaires offer a structured means of collecting data from a vast audience. Through carefully designed questions, researchers can obtain standardized responses that lend themselves to straightforward comparison and analysis in quantitative and qualitative research .

Survey research can manifest in various formats, from face-to-face interactions and telephone conversations to digital platforms. While surveys can reach a broad audience and generate quantitative data ripe for statistical analysis, they also come with the challenge of potential biases in design and rely heavily on respondent honesty.

Observations and case studies

Direct or participant observation is a method wherein researchers actively watch and document behaviors or events. A researcher might, for instance, observe the dynamics within a classroom or the behaviors of shoppers in a market setting.

Case studies provide an even deeper dive, focusing on a thorough analysis of a specific individual, group, or event. These methods present the advantage of capturing real-time, detailed data, but they might also be time-intensive and can sometimes introduce observer bias .

Interviews and focus groups

Interviews , whether they follow a structured script or flow more organically, are a powerful means to extract detailed insights directly from participants. On the other hand, focus groups gather multiple participants for discussions, aiming to gather diverse and collective opinions on a particular topic or product.

These methods offer the benefit of deep insights and adaptability in data collection . However, they necessitate skilled interviewers, and focus group settings might see individual opinions being influenced by group dynamics.

Document and content analysis

Here, instead of generating new data, researchers examine existing documents or content . This can range from studying historical records and newspapers to analyzing media content or literature.

Analyzing existing content offers the advantage of accessibility and can provide insights over longer time frames. However, the reliability and relevance of the content are paramount, and researchers must approach this method with a discerning eye.

Descriptive research data, rich in details and insights, necessitates meticulous analysis to derive meaningful conclusions. The analysis process transforms raw data into structured findings that can be communicated and acted upon.

Qualitative content analysis

For data collected through interviews , focus groups , observations , or open-ended survey questions , qualitative content analysis is a popular choice. This involves examining non-numerical data to identify patterns, themes, or categories.

By coding responses or observations , researchers can identify recurring elements, making it easier to comprehend larger data sets and draw insights.

Using descriptive statistics

When dealing with quantitative data from surveys or experiments, descriptive statistics are invaluable. Measures such as mean, median, mode, standard deviation, and frequency distributions help summarize data sets, providing a snapshot of the overall patterns.

Graphical representations like histograms, pie charts, or bar graphs can further help in visualizing these statistics.

Coding and categorizing the data

Both qualitative and quantitative data often require coding. Coding involves assigning labels to specific responses or behaviors to group similar segments of data. This categorization aids in identifying patterns, especially in vast data sets.

For instance, responses to open-ended questions in a survey can be coded based on keywords or sentiments, allowing for a more structured analysis.

Visual representation through graphs and charts

Visual aids like graphs, charts, and plots can simplify complex data, making it more accessible and understandable. Whether it's showcasing frequency distributions through histograms or mapping out relationships with networks, visual representations can elucidate trends and patterns effectively.

In the realm of research , the credibility of findings is paramount. Without trustworthiness in the results, even the most meticulously gathered data can lose its value. Two cornerstones that bolster the credibility of research outcomes are validity and reliability .

Validity: Measuring the right thing

Validity addresses the accuracy of the research. It seeks to answer the question: Is the research genuinely measuring what it aims to measure? In descriptive research, where the objective is to paint an authentic picture of the current state of affairs, ensuring validity is crucial.

For instance, if a study aims to understand consumer preferences for a product category, the questions posed should genuinely reflect those preferences and not veer into unrelated territories. Multiple forms of validity, including content, criterion, and construct validity, can be examined to ensure that the research instruments and processes are aligned with the research goals.

Reliability: Consistency in findings

Reliability, on the other hand, pertains to the consistency of the research findings. When a study demonstrates reliability, this suggests that others could repeat the study and the outcomes would remain consistent across repetitions.

In descriptive research, factors like the clarity of survey questions , the training of observers , and the standardization of interview protocols play a role in enhancing reliability. Techniques such as test-retest and internal consistency measurements can be employed to assess and improve reliability.

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18 Descriptive Research Examples

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Dr. Cornell has worked in education for more than 20 years. His work has involved designing teacher certification for Trinity College in London and in-service training for state governments in the United States. He has trained kindergarten teachers in 8 countries and helped businessmen and women open baby centers and kindergartens in 3 countries.

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This article was peer-reviewed and edited by Chris Drew (PhD). The review process on Helpful Professor involves having a PhD level expert fact check, edit, and contribute to articles. Reviewers ensure all content reflects expert academic consensus and is backed up with reference to academic studies. Dr. Drew has published over 20 academic articles in scholarly journals. He is the former editor of the Journal of Learning Development in Higher Education and holds a PhD in Education from ACU.

Descriptive research involves gathering data to provide a detailed account or depiction of a phenomenon without manipulating variables or conducting experiments.

A scholarly definition is:

“Descriptive research is defined as a research approach that describes the characteristics of the population, sample or phenomenon studied. This method focuses more on the “what” rather than the “why” of the research subject.” (Matanda, 2022, p. 63)

The key feature of descriptive research is that it merely describes phenomena and does not attempt to manipulate variables nor determine cause and effect .

To determine cause and effect , a researcher would need to use an alternate methodology, such as experimental research design .

Common approaches to descriptive research include:

• Cross-sectional research : A cross-sectional study gathers data on a population at a specific time to get descriptive data that could include categories (e.g. age or income brackets) to get a better understanding of the makeup of a population.
• Longitudinal research : Longitudinal studies return to a population to collect data at several different points in time, allowing for description of changes in categories over time. However, as it’s descriptive, it cannot infer cause and effect (Erickson, 2017).

Methods that could be used include:

• Surveys: For example, sending out a census survey to be completed at the exact same date and time by everyone in a population.
• Case Study : For example, an in-depth description of a specific person or group of people to gain in-depth qualitative information that can describe a phenomenon but cannot be generalized to other cases.
• Observational Method : For example, a researcher taking field notes in an ethnographic study. (Siedlecki, 2020)

Descriptive Research Examples

1. Understanding Autism Spectrum Disorder (Psychology): Researchers analyze various behavior patterns, cognitive skills, and social interaction abilities specific to children with Autism Spectrum Disorder to comprehensively describe the disorder’s symptom spectrum. This detailed description classifies it as descriptive research, rather than analytical or experimental, as it merely records what is observed without altering any variables or trying to establish causality.

2. Consumer Purchase Decision Process in E-commerce Marketplaces (Marketing): By documenting and describing all the factors that influence consumer decisions on online marketplaces, researchers don’t attempt to predict future behavior or establish causes—just describe observed behavior—making it descriptive research.

3. Impacts of Climate Change on Agricultural Practices (Environmental Studies): Descriptive research is seen as scientists outline how climate changes influence various agricultural practices by observing and then meticulously categorizing the impacts on crop variability, farming seasons, and pest infestations without manipulating any variables in real-time.

4. Work Environment and Employee Performance (Human Resources Management): A study of this nature, describing the correlation between various workplace elements and employee performance, falls under descriptive research as it merely narrates the observed patterns without altering any conditions or testing hypotheses.

5. Factors Influencing Student Performance (Education): Researchers describe various factors affecting students’ academic performance, such as studying techniques, parental involvement, and peer influence. The study is categorized as descriptive research because its principal aim is to depict facts as they stand without trying to infer causal relationships.

6. Technological Advances in Healthcare (Healthcare): This research describes and categorizes different technological advances (such as telemedicine, AI-enabled tools, digital collaboration) in healthcare without testing or modifying any parameters, making it an example of descriptive research.

7. Urbanization and Biodiversity Loss (Ecology): By describing the impact of rapid urban expansion on biodiversity loss, this study serves as a descriptive research example. It observes the ongoing situation without manipulating it, offering a comprehensive depiction of the existing scenario rather than investigating the cause-effect relationship.

8. Architectural Styles across Centuries (Art History): A study documenting and describing various architectural styles throughout centuries essentially represents descriptive research. It aims to narrate and categorize facts without exploring the underlying reasons or predicting future trends.

9. Media Usage Patterns among Teenagers (Sociology): When researchers document and describe the media consumption habits among teenagers, they are performing a descriptive research study. Their main intention is to observe and report the prevailing trends rather than establish causes or predict future behaviors.

10. Dietary Habits and Lifestyle Diseases (Nutrition Science): By describing the dietary patterns of different population groups and correlating them with the prevalence of lifestyle diseases, researchers perform descriptive research. They merely describe observed connections without altering any diet plans or lifestyles.

11. Shifts in Global Energy Consumption (Environmental Economics): When researchers describe the global patterns of energy consumption and how they’ve shifted over the years, they conduct descriptive research. The focus is on recording and portraying the current state without attempting to infer causes or predict the future.

12. Literacy and Employment Rates in Rural Areas (Sociology): A study aims at describing the literacy rates in rural areas and correlating it with employment levels. It falls under descriptive research because it maps the scenario without manipulating parameters or proving a hypothesis.

13. Women Representation in Tech Industry (Gender Studies): A detailed description of the presence and roles of women across various sectors of the tech industry is a typical case of descriptive research. It merely observes and records the status quo without establishing causality or making predictions.

14. Impact of Urban Green Spaces on Mental Health (Environmental Psychology): When researchers document and describe the influence of green urban spaces on residents’ mental health, they are undertaking descriptive research. They seek purely to understand the current state rather than exploring cause-effect relationships.

15. Trends in Smartphone usage among Elderly (Gerontology): Research describing how the elderly population utilizes smartphones, including popular features and challenges encountered, serves as descriptive research. Researcher’s aim is merely to capture what is happening without manipulating variables or posing predictions.

16. Shifts in Voter Preferences (Political Science): A study describing the shift in voter preferences during a particular electoral cycle is descriptive research. It simply records the preferences revealed without drawing causal inferences or suggesting future voting patterns.

17. Understanding Trust in Autonomous Vehicles (Transportation Psychology): This comprises research describing public attitudes and trust levels when it comes to autonomous vehicles. By merely depicting observed sentiments, without engineering any situations or offering predictions, it’s considered descriptive research.

18. The Impact of Social Media on Body Image (Psychology): Descriptive research to outline the experiences and perceptions of individuals relating to body image in the era of social media. Observing these elements without altering any variables qualifies it as descriptive research.

Descriptive vs Experimental Research

Descriptive research merely observes, records, and presents the actual state of affairs without manipulating any variables, while experimental research involves deliberately changing one or more variables to determine their effect on a particular outcome.

De Vaus (2001) succinctly explains that descriptive studies find out what is going on , but experimental research finds out why it’s going on /

Simple definitions are below:

• Descriptive research is primarily about describing the characteristics or behaviors in a population, often through surveys or observational methods. It provides rich detail about a specific phenomenon but does not allow for conclusive causal statements; however, it can offer essential leads or ideas for further experimental research (Ivey, 2016).
• Experimental research , often conducted in controlled environments, aims to establish causal relationships by manipulating one or more independent variables and observing the effects on dependent variables (Devi, 2017; Mukherjee, 2019).

Experimental designs often involve a control group and random assignment . While it can provide compelling evidence for cause and effect, its artificial setting might not perfectly mirror real-worldly conditions, potentially affecting the generalizability of its findings.

These two types of research are complementary, with descriptive studies often leading to hypotheses that are then tested experimentally (Devi, 2017; Zhao et al., 2021).

Benefits and Limitations of Descriptive Research

Descriptive research offers several benefits: it allows researchers to gather a vast amount of data and present a complete picture of the situation or phenomenon under study, even within large groups or over long time periods.

It’s also flexible in terms of the variety of methods used, such as surveys, observations, and case studies, and it can be instrumental in identifying patterns or trends and generating hypotheses (Erickson, 2017).

However, it also has its limitations.

The primary drawback is that it can’t establish cause-effect relationships, as no variables are manipulated. This lack of control over variables also opens up possibilities for bias, as researchers might inadvertently influence responses during data collection (De Vaus, 2001).

Additionally, the findings of descriptive research are often not generalizable since they are heavily reliant on the chosen sample’s characteristics.

See More Types of Research Design Here

De Vaus, D. A. (2001). Research Design in Social Research . SAGE Publications.

Devi, P. S. (2017). Research Methodology: A Handbook for Beginners . Notion Press.

Erickson, G. S. (2017). Descriptive research design. In  New Methods of Market Research and Analysis  (pp. 51-77). Edward Elgar Publishing.

Gresham, B. B. (2016). Concepts of Evidence-based Practice for the Physical Therapist Assistant . F.A. Davis Company.

Ivey, J. (2016). Is descriptive research worth doing?.  Pediatric nursing ,  42 (4), 189. ( Source )

Krishnaswamy, K. N., Sivakumar, A. I., & Mathirajan, M. (2009). Management Research Methodology: Integration of Principles, Methods and Techniques . Pearson Education.

Matanda, E. (2022). Research Methods and Statistics for Cross-Cutting Research: Handbook for Multidisciplinary Research . Langaa RPCIG.

Monsen, E. R., & Van Horn, L. (2007). Research: Successful Approaches . American Dietetic Association.

Mukherjee, S. P. (2019). A Guide to Research Methodology: An Overview of Research Problems, Tasks and Methods . CRC Press.

Siedlecki, S. L. (2020). Understanding descriptive research designs and methods.  Clinical Nurse Specialist ,  34 (1), 8-12. ( Source )

Zhao, P., Ross, K., Li, P., & Dennis, B. (2021). Making Sense of Social Research Methodology: A Student and Practitioner Centered Approach . SAGE Publications.

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• Dave Cornell (PhD) https://helpfulprofessor.com/author/dave-cornell-phd/ 15 Theory of Planned Behavior Examples
• Dave Cornell (PhD) https://helpfulprofessor.com/author/dave-cornell-phd/ 18 Adaptive Behavior Examples

• Chris Drew (PhD) https://helpfulprofessor.com/author/chris-drew-phd/ 23 Achieved Status Examples
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• What is descriptive research?

Last updated

5 February 2023

Reviewed by

Cathy Heath

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Descriptive research is a common investigatory model used by researchers in various fields, including social sciences, linguistics, and academia.

Read on to understand the characteristics of descriptive research and explore its underlying techniques, processes, and procedures.

Analyze your descriptive research

Dovetail streamlines analysis to help you uncover and share actionable insights

Descriptive research is an exploratory research method. It enables researchers to precisely and methodically describe a population, circumstance, or phenomenon.

As the name suggests, descriptive research describes the characteristics of the group, situation, or phenomenon being studied without manipulating variables or testing hypotheses . This can be reported using surveys , observational studies, and case studies. You can use both quantitative and qualitative methods to compile the data.

Besides making observations and then comparing and analyzing them, descriptive studies often develop knowledge concepts and provide solutions to critical issues. It always aims to answer how the event occurred, when it occurred, where it occurred, and what the problem or phenomenon is.

• Characteristics of descriptive research

The following are some of the characteristics of descriptive research:

Quantitativeness

Descriptive research can be quantitative as it gathers quantifiable data to statistically analyze a population sample. These numbers can show patterns, connections, and trends over time and can be discovered using surveys, polls, and experiments.

Qualitativeness

Descriptive research can also be qualitative. It gives meaning and context to the numbers supplied by quantitative descriptive research .

Researchers can use tools like interviews, focus groups, and ethnographic studies to illustrate why things are what they are and help characterize the research problem. This is because it’s more explanatory than exploratory or experimental research.

Uncontrolled variables

Descriptive research differs from experimental research in that researchers cannot manipulate the variables. They are recognized, scrutinized, and quantified instead. This is one of its most prominent features.

Cross-sectional studies

Descriptive research is a cross-sectional study because it examines several areas of the same group. It involves obtaining data on multiple variables at the personal level during a certain period. It’s helpful when trying to understand a larger community’s habits or preferences.

Carried out in a natural environment

Descriptive studies are usually carried out in the participants’ everyday environment, which allows researchers to avoid influencing responders by collecting data in a natural setting. You can use online surveys or survey questions to collect data or observe.

Basis for further research

You can further dissect descriptive research’s outcomes and use them for different types of investigation. The outcomes also serve as a foundation for subsequent investigations and can guide future studies. For example, you can use the data obtained in descriptive research to help determine future research designs.

• Descriptive research methods

There are three basic approaches for gathering data in descriptive research: observational, case study, and survey.

You can use surveys to gather data in descriptive research. This involves gathering information from many people using a questionnaire and interview .

Surveys remain the dominant research tool for descriptive research design. Researchers can conduct various investigations and collect multiple types of data (quantitative and qualitative) using surveys with diverse designs.

You can conduct surveys over the phone, online, or in person. Your survey might be a brief interview or conversation with a set of prepared questions intended to obtain quick information from the primary source.

Observation

This descriptive research method involves observing and gathering data on a population or phenomena without manipulating variables. It is employed in psychology, market research , and other social science studies to track and understand human behavior.

Observation is an essential component of descriptive research. It entails gathering data and analyzing it to see whether there is a relationship between the two variables in the study. This strategy usually allows for both qualitative and quantitative data analysis.

Case studies

A case study can outline a specific topic’s traits. The topic might be a person, group, event, or organization.

It involves using a subset of a larger group as a sample to characterize the features of that larger group.

You can generalize knowledge gained from studying a case study to benefit a broader audience.

This approach entails carefully examining a particular group, person, or event over time. You can learn something new about the study topic by using a small group to better understand the dynamics of the entire group.

• Types of descriptive research

There are several types of descriptive study. The most well-known include cross-sectional studies, census surveys, sample surveys, case reports, and comparison studies.

Case reports and case series

In the healthcare and medical fields, a case report is used to explain a patient’s circumstances when suffering from an uncommon illness or displaying certain symptoms. Case reports and case series are both collections of related cases. They have aided the advancement of medical knowledge on countless occasions.

The normative component is an addition to the descriptive survey. In the descriptive–normative survey, you compare the study’s results to the norm.

Descriptive survey

This descriptive type of research employs surveys to collect information on various topics. This data aims to determine the degree to which certain conditions may be attained.

You can extrapolate or generalize the information you obtain from sample surveys to the larger group being researched.

Correlative survey

Correlative surveys help establish if there is a positive, negative, or neutral connection between two variables.

Performing census surveys involves gathering relevant data on several aspects of a given population. These units include individuals, families, organizations, objects, characteristics, and properties.

During descriptive research, you gather different degrees of interest over time from a specific population. Cross-sectional studies provide a glimpse of a phenomenon’s prevalence and features in a population. There are no ethical challenges with them and they are quite simple and inexpensive to carry out.

Comparative studies

These surveys compare the two subjects’ conditions or characteristics. The subjects may include research variables, organizations, plans, and people.

Comparison points, assumption of similarities, and criteria of comparison are three important variables that affect how well and accurately comparative studies are conducted.

For instance, descriptive research can help determine how many CEOs hold a bachelor’s degree and what proportion of low-income households receive government help.

• Pros and cons

The primary advantage of descriptive research designs is that researchers can create a reliable and beneficial database for additional study. To conduct any inquiry, you need access to reliable information sources that can give you a firm understanding of a situation.

Quantitative studies are time- and resource-intensive, so knowing the hypotheses viable for testing is crucial. The basic overview of descriptive research provides helpful hints as to which variables are worth quantitatively examining. This is why it’s employed as a precursor to quantitative research designs.

Some experts view this research as untrustworthy and unscientific. However, there is no way to assess the findings because you don’t manipulate any variables statistically.

Cause-and-effect correlations also can’t be established through descriptive investigations. Additionally, observational study findings cannot be replicated, which prevents a review of the findings and their replication.

The absence of statistical and in-depth analysis and the rather superficial character of the investigative procedure are drawbacks of this research approach.

• Descriptive research examples and applications

Several descriptive research examples are emphasized based on their types, purposes, and applications. Research questions often begin with “What is …” These studies help find solutions to practical issues in social science, physical science, and education.

Here are some examples and applications of descriptive research:

Determining consumer perception and behavior

Organizations use descriptive research designs to determine how various demographic groups react to a certain product or service.

For example, a business looking to sell to its target market should research the market’s behavior first. When researching human behavior in response to a cause or event, the researcher pays attention to the traits, actions, and responses before drawing a conclusion.

Scientific classification

Scientific descriptive research enables the classification of organisms and their traits and constituents.

Measuring data trends

A descriptive study design’s statistical capabilities allow researchers to track data trends over time. It’s frequently used to determine the study target’s current circumstances and underlying patterns.

Conduct comparison

Organizations can use a descriptive research approach to learn how various demographics react to a certain product or service. For example, you can study how the target market responds to a competitor’s product and use that information to infer their behavior.

• Bottom line

A descriptive research design is suitable for exploring certain topics and serving as a prelude to larger quantitative investigations. It provides a comprehensive understanding of the “what” of the group or thing you’re investigating.

This research type acts as the cornerstone of other research methodologies . It is distinctive because it can use quantitative and qualitative research approaches at the same time.

What is descriptive research design?

Descriptive research design aims to systematically obtain information to describe a phenomenon, situation, or population. More specifically, it helps answer the what, when, where, and how questions regarding the research problem rather than the why.

How does descriptive research compare to qualitative research?

Despite certain parallels, descriptive research concentrates on describing phenomena, while qualitative research aims to understand people better.

How do you analyze descriptive research data?

Data analysis involves using various methodologies, enabling the researcher to evaluate and provide results regarding validity and reliability.

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Descriptive Research: Definition, Characteristics, Methods + Examples

Suppose an apparel brand wants to understand the fashion purchasing trends among New York’s buyers, then it must conduct a demographic survey of the specific region, gather population data, and then conduct descriptive research on this demographic segment.

The study will then uncover details on “what is the purchasing pattern of New York buyers,” but will not cover any investigative information about “ why ” the patterns exist. Because for the apparel brand trying to break into this market, understanding the nature of their market is the study’s main goal. Let’s talk about it.

What is descriptive research?

Descriptive research is a research method describing the characteristics of the population or phenomenon studied. This descriptive methodology focuses more on the “what” of the research subject than the “why” of the research subject.

The method primarily focuses on describing the nature of a demographic segment without focusing on “why” a particular phenomenon occurs. In other words, it “describes” the research subject without covering “why” it happens.

Characteristics of descriptive research

The term descriptive research then refers to research questions, the design of the study, and data analysis conducted on that topic. We call it an observational research method because none of the research study variables are influenced in any capacity.

Some distinctive characteristics of descriptive research are:

• Quantitative research: It is a quantitative research method that attempts to collect quantifiable information for statistical analysis of the population sample. It is a popular market research tool that allows us to collect and describe the demographic segment’s nature.
• Uncontrolled variables: In it, none of the variables are influenced in any way. This uses observational methods to conduct the research. Hence, the nature of the variables or their behavior is not in the hands of the researcher.
• Cross-sectional studies: It is generally a cross-sectional study where different sections belonging to the same group are studied.
• The basis for further research: Researchers further research the data collected and analyzed from descriptive research using different research techniques. The data can also help point towards the types of research methods used for the subsequent research.

Applications of descriptive research with examples

A descriptive research method can be used in multiple ways and for various reasons. Before getting into any survey , though, the survey goals and survey design are crucial. Despite following these steps, there is no way to know if one will meet the research outcome. How to use descriptive research? To understand the end objective of research goals, below are some ways organizations currently use descriptive research today:

• Define respondent characteristics: The aim of using close-ended questions is to draw concrete conclusions about the respondents. This could be the need to derive patterns, traits, and behaviors of the respondents. It could also be to understand from a respondent their attitude, or opinion about the phenomenon. For example, understand millennials and the hours per week they spend browsing the internet. All this information helps the organization researching to make informed business decisions.
• Measure data trends: Researchers measure data trends over time with a descriptive research design’s statistical capabilities. Consider if an apparel company researches different demographics like age groups from 24-35 and 36-45 on a new range launch of autumn wear. If one of those groups doesn’t take too well to the new launch, it provides insight into what clothes are like and what is not. The brand drops the clothes and apparel that customers don’t like.
• Conduct comparisons: Organizations also use a descriptive research design to understand how different groups respond to a specific product or service. For example, an apparel brand creates a survey asking general questions that measure the brand’s image. The same study also asks demographic questions like age, income, gender, geographical location, geographic segmentation , etc. This consumer research helps the organization understand what aspects of the brand appeal to the population and what aspects do not. It also helps make product or marketing fixes or even create a new product line to cater to high-growth potential groups.
• Validate existing conditions: Researchers widely use descriptive research to help ascertain the research object’s prevailing conditions and underlying patterns. Due to the non-invasive research method and the use of quantitative observation and some aspects of qualitative observation , researchers observe each variable and conduct an in-depth analysis . Researchers also use it to validate any existing conditions that may be prevalent in a population.
• Conduct research at different times: The analysis can be conducted at different periods to ascertain any similarities or differences. This also allows any number of variables to be evaluated. For verification, studies on prevailing conditions can also be repeated to draw trends.

Advantages of descriptive research

Some of the significant advantages of descriptive research are:

• Data collection: A researcher can conduct descriptive research using specific methods like observational method, case study method, and survey method. Between these three, all primary data collection methods are covered, which provides a lot of information. This can be used for future research or even for developing a hypothesis for your research object.
• Varied: Since the data collected is qualitative and quantitative, it gives a holistic understanding of a research topic. The information is varied, diverse, and thorough.
• Natural environment: Descriptive research allows for the research to be conducted in the respondent’s natural environment, which ensures that high-quality and honest data is collected.
• Quick to perform and cheap: As the sample size is generally large in descriptive research, the data collection is quick to conduct and is inexpensive.

Descriptive research methods

There are three distinctive methods to conduct descriptive research. They are:

Observational method

The observational method is the most effective method to conduct this research, and researchers make use of both quantitative and qualitative observations.

A quantitative observation is the objective collection of data primarily focused on numbers and values. It suggests “associated with, of or depicted in terms of a quantity.” Results of quantitative observation are derived using statistical and numerical analysis methods. It implies observation of any entity associated with a numeric value such as age, shape, weight, volume, scale, etc. For example, the researcher can track if current customers will refer the brand using a simple Net Promoter Score question .

Qualitative observation doesn’t involve measurements or numbers but instead just monitoring characteristics. In this case, the researcher observes the respondents from a distance. Since the respondents are in a comfortable environment, the characteristics observed are natural and effective. In a descriptive research design, the researcher can choose to be either a complete observer, an observer as a participant, a participant as an observer, or a full participant. For example, in a supermarket, a researcher can from afar monitor and track the customers’ selection and purchasing trends. This offers a more in-depth insight into the purchasing experience of the customer.

Case study method

Case studies involve in-depth research and study of individuals or groups. Case studies lead to a hypothesis and widen a further scope of studying a phenomenon. However, case studies should not be used to determine cause and effect as they can’t make accurate predictions because there could be a bias on the researcher’s part. The other reason why case studies are not a reliable way of conducting descriptive research is that there could be an atypical respondent in the survey. Describing them leads to weak generalizations and moving away from external validity.

Survey research

In survey research, respondents answer through surveys or questionnaires or polls . They are a popular market research tool to collect feedback from respondents. A study to gather useful data should have the right survey questions. It should be a balanced mix of open-ended questions and close ended-questions . The survey method can be conducted online or offline, making it the go-to option for descriptive research where the sample size is enormous.

Examples of descriptive research

Some examples of descriptive research are:

• A specialty food group launching a new range of barbecue rubs would like to understand what flavors of rubs are favored by different people. To understand the preferred flavor palette, they conduct this type of research study using various methods like observational methods in supermarkets. By also surveying while collecting in-depth demographic information, offers insights about the preference of different markets. This can also help tailor make the rubs and spreads to various preferred meats in that demographic. Conducting this type of research helps the organization tweak their business model and amplify marketing in core markets.
• Another example of where this research can be used is if a school district wishes to evaluate teachers’ attitudes about using technology in the classroom. By conducting surveys and observing their comfortableness using technology through observational methods, the researcher can gauge what they can help understand if a full-fledged implementation can face an issue. This also helps in understanding if the students are impacted in any way with this change.

Some other research problems and research questions that can lead to descriptive research are:

• Market researchers want to observe the habits of consumers.
• A company wants to evaluate the morale of its staff.
• A school district wants to understand if students will access online lessons rather than textbooks.
• To understand if its wellness questionnaire programs enhance the overall health of the employees.

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Descriptive Research and Case Studies

Learning objectives.

• Explain the importance and uses of descriptive research, especially case studies, in studying abnormal behavior

Types of Research Methods

There are many research methods available to psychologists in their efforts to understand, describe, and explain behavior and the cognitive and biological processes that underlie it. Some methods rely on observational techniques. Other approaches involve interactions between the researcher and the individuals who are being studied—ranging from a series of simple questions; to extensive, in-depth interviews; to well-controlled experiments.

The three main categories of psychological research are descriptive, correlational, and experimental research. Research studies that do not test specific relationships between variables are called descriptive, or qualitative, studies . These studies are used to describe general or specific behaviors and attributes that are observed and measured. In the early stages of research, it might be difficult to form a hypothesis, especially when there is not any existing literature in the area. In these situations designing an experiment would be premature, as the question of interest is not yet clearly defined as a hypothesis. Often a researcher will begin with a non-experimental approach, such as a descriptive study, to gather more information about the topic before designing an experiment or correlational study to address a specific hypothesis. Descriptive research is distinct from correlational research , in which psychologists formally test whether a relationship exists between two or more variables. Experimental research goes a step further beyond descriptive and correlational research and randomly assigns people to different conditions, using hypothesis testing to make inferences about how these conditions affect behavior. It aims to determine if one variable directly impacts and causes another. Correlational and experimental research both typically use hypothesis testing, whereas descriptive research does not.

Each of these research methods has unique strengths and weaknesses, and each method may only be appropriate for certain types of research questions. For example, studies that rely primarily on observation produce incredible amounts of information, but the ability to apply this information to the larger population is somewhat limited because of small sample sizes. Survey research, on the other hand, allows researchers to easily collect data from relatively large samples. While surveys allow results to be generalized to the larger population more easily, the information that can be collected on any given survey is somewhat limited and subject to problems associated with any type of self-reported data. Some researchers conduct archival research by using existing records. While existing records can be a fairly inexpensive way to collect data that can provide insight into a number of research questions, researchers using this approach have no control on how or what kind of data was collected.

Correlational research can find a relationship between two variables, but the only way a researcher can claim that the relationship between the variables is cause and effect is to perform an experiment. In experimental research, which will be discussed later, there is a tremendous amount of control over variables of interest. While performing an experiment is a powerful approach, experiments are often conducted in very artificial settings, which calls into question the validity of experimental findings with regard to how they would apply in real-world settings. In addition, many of the questions that psychologists would like to answer cannot be pursued through experimental research because of ethical concerns.

The three main types of descriptive studies are case studies, naturalistic observation, and surveys.

Clinical or Case Studies

Psychologists can use a detailed description of one person or a small group based on careful observation.  Case studies  are intensive studies of individuals and have commonly been seen as a fruitful way to come up with hypotheses and generate theories. Case studies add descriptive richness. Case studies are also useful for formulating concepts, which are an important aspect of theory construction. Through fine-grained knowledge and description, case studies can fully specify the causal mechanisms in a way that may be harder in a large study.

Sigmund Freud   developed  many theories from case studies (Anna O., Little Hans, Wolf Man, Dora, etc.). F or example, he conducted a case study of a man, nicknamed “Rat Man,”  in which he claimed that this patient had been cured by psychoanalysis.  T he nickname derives from the fact that among the patient’s many compulsions, he had an obsession with nightmarish fantasies about rats. 

Today, more commonly, case studies reflect an up-close, in-depth, and detailed examination of an individual’s course of treatment. Case studies typically include a complete history of the subject’s background and response to treatment. From the particular client’s experience in therapy, the therapist’s goal is to provide information that may help other therapists who treat similar clients.

Case studies are generally a single-case design, but can also be a multiple-case design, where replication instead of sampling is the criterion for inclusion. Like other research methodologies within psychology, the case study must produce valid and reliable results in order to be useful for the development of future research. Distinct advantages and disadvantages are associated with the case study in psychology.

A commonly described limit of case studies is that they do not lend themselves to generalizability . The other issue is that the case study is subject to the bias of the researcher in terms of how the case is written, and that cases are chosen because they are consistent with the researcher’s preconceived notions, resulting in biased research. Another common problem in case study research is that of reconciling conflicting interpretations of the same case history.

Despite these limitations, there are advantages to using case studies. One major advantage of the case study in psychology is the potential for the development of novel hypotheses of the  cause of abnormal behavior   for later testing. Second, the case study can provide detailed descriptions of specific and rare cases and help us study unusual conditions that occur too infrequently to study with large sample sizes. The major disadvantage is that case studies cannot be used to determine causation, as is the case in experimental research, where the factors or variables hypothesized to play a causal role are manipulated or controlled by the researcher. 

Link to Learning: Famous Case Studies

Some well-known case studies that related to abnormal psychology include the following:

• Harlow— Phineas Gage
• Breuer & Freud (1895)— Anna O.
• Cleckley’s case studies: on psychopathy ( The Mask of Sanity ) (1941) and multiple personality disorder ( The Three Faces of Eve ) (1957)
• Freud and  Little Hans
• Freud and the  Rat Man
• John Money and the  John/Joan case
• Genie (feral child)
• Piaget’s studies
• Rosenthal’s book on the  murder of Kitty Genovese
• Washoe (sign language)
• Patient H.M.

Naturalistic Observation

If you want to understand how behavior occurs, one of the best ways to gain information is to simply observe the behavior in its natural context. However, people might change their behavior in unexpected ways if they know they are being observed. How do researchers obtain accurate information when people tend to hide their natural behavior? As an example, imagine that your professor asks everyone in your class to raise their hand if they always wash their hands after using the restroom. Chances are that almost everyone in the classroom will raise their hand, but do you think hand washing after every trip to the restroom is really that universal?

This is very similar to the phenomenon mentioned earlier in this module: many individuals do not feel comfortable answering a question honestly. But if we are committed to finding out the facts about handwashing, we have other options available to us.

Suppose we send a researcher to a school playground to observe how aggressive or socially anxious children interact with peers. Will our observer blend into the playground environment by wearing a white lab coat, sitting with a clipboard, and staring at the swings? We want our researcher to be inconspicuous and unobtrusively positioned—perhaps pretending to be a school monitor while secretly recording the relevant information. This type of observational study is called naturalistic observation : observing behavior in its natural setting. To better understand peer exclusion, Suzanne Fanger collaborated with colleagues at the University of Texas to observe the behavior of preschool children on a playground. How did the observers remain inconspicuous over the duration of the study? They equipped a few of the children with wireless microphones (which the children quickly forgot about) and observed while taking notes from a distance. Also, the children in that particular preschool (a “laboratory preschool”) were accustomed to having observers on the playground (Fanger, Frankel, & Hazen, 2012).

It is critical that the observer be as unobtrusive and as inconspicuous as possible: when people know they are being watched, they are less likely to behave naturally. For example, psychologists have spent weeks observing the behavior of homeless people on the streets, in train stations, and bus terminals. They try to ensure that their naturalistic observations are unobtrusive, so as to minimize interference with the behavior they observe. Nevertheless, the presence of the observer may distort the behavior that is observed, and this must be taken into consideration (Figure 1).

The greatest benefit of naturalistic observation is the validity, or accuracy, of information collected unobtrusively in a natural setting. Having individuals behave as they normally would in a given situation means that we have a higher degree of ecological validity, or realism, than we might achieve with other research approaches. Therefore, our ability to generalize the findings of the research to real-world situations is enhanced. If done correctly, we need not worry about people modifying their behavior simply because they are being observed. Sometimes, people may assume that reality programs give us a glimpse into authentic human behavior. However, the principle of inconspicuous observation is violated as reality stars are followed by camera crews and are interviewed on camera for personal confessionals. Given that environment, we must doubt how natural and realistic their behaviors are.

The major downside of naturalistic observation is that they are often difficult to set up and control. Although something as simple as observation may seem like it would be a part of all research methods, participant observation is a distinct methodology that involves the researcher embedding themselves into a group in order to study its dynamics. For example, Festinger, Riecken, and Shacter (1956) were very interested in the psychology of a particular cult. However, this cult was very secretive and wouldn’t grant interviews to outside members. So, in order to study these people, Festinger and his colleagues pretended to be cult members, allowing them access to the behavior and psychology of the cult. Despite this example, it should be noted that the people being observed in a participant observation study usually know that the researcher is there to study them. [1]

Another potential problem in observational research is observer bias . Generally, people who act as observers are closely involved in the research project and may unconsciously skew their observations to fit their research goals or expectations. To protect against this type of bias, researchers should have clear criteria established for the types of behaviors recorded and how those behaviors should be classified. In addition, researchers often compare observations of the same event by multiple observers, in order to test inter-rater reliability : a measure of reliability that assesses the consistency of observations by different observers.

Often, psychologists develop surveys as a means of gathering data. Surveys are lists of questions to be answered by research participants, and can be delivered as paper-and-pencil questionnaires, administered electronically, or conducted verbally (Figure 3). Generally, the survey itself can be completed in a short time, and the ease of administering a survey makes it easy to collect data from a large number of people.

Surveys allow researchers to gather data from larger samples than may be afforded by other research methods . A sample is a subset of individuals selected from a population , which is the overall group of individuals that the researchers are interested in. Researchers study the sample and seek to generalize their findings to the population.

There is both strength and weakness in surveys when compared to case studies. By using surveys, we can collect information from a larger sample of people. A larger sample is better able to reflect the actual diversity of the population, thus allowing better generalizability. Therefore, if our sample is sufficiently large and diverse, we can assume that the data we collect from the survey can be generalized to the larger population with more certainty than the information collected through a case study. However, given the greater number of people involved, we are not able to collect the same depth of information on each person that would be collected in a case study.

Another potential weakness of surveys is something we touched on earlier in this module: people do not always give accurate responses. They may lie, misremember, or answer questions in a way that they think makes them look good. For example, people may report drinking less alcohol than is actually the case.

Any number of research questions can be answered through the use of surveys. One real-world example is the research conducted by Jenkins, Ruppel, Kizer, Yehl, and Griffin (2012) about the backlash against the U.S. Arab-American community following the terrorist attacks of September 11, 2001. Jenkins and colleagues wanted to determine to what extent these negative attitudes toward Arab-Americans still existed nearly a decade after the attacks occurred. In one study, 140 research participants filled out a survey with 10 questions, including questions asking directly about the participant’s overt prejudicial attitudes toward people of various ethnicities. The survey also asked indirect questions about how likely the participant would be to interact with a person of a given ethnicity in a variety of settings (such as, “How likely do you think it is that you would introduce yourself to a person of Arab-American descent?”). The results of the research suggested that participants were unwilling to report prejudicial attitudes toward any ethnic group. However, there were significant differences between their pattern of responses to questions about social interaction with Arab-Americans compared to other ethnic groups: they indicated less willingness for social interaction with Arab-Americans compared to the other ethnic groups. This suggested that the participants harbored subtle forms of prejudice against Arab-Americans, despite their assertions that this was not the case (Jenkins et al., 2012).

Think it Over

Research has shown that parental depressive symptoms are linked to a number of negative child outcomes. A classmate of yours is interested in  the associations between parental depressive symptoms and actual child behaviors in everyday life [2] because this associations remains largely unknown. After reading this section, what do you think is the best way to better understand such associations? Which method might result in the most valid data?

clinical or case study:  observational research study focusing on one or a few people

correlational research:  tests whether a relationship exists between two or more variables

descriptive research:  research studies that do not test specific relationships between variables; they are used to describe general or specific behaviors and attributes that are observed and measured

experimental research:  tests a hypothesis to determine cause-and-effect relationships

generalizability:  inferring that the results for a sample apply to the larger population

inter-rater reliability:  measure of agreement among observers on how they record and classify a particular event

naturalistic observation:  observation of behavior in its natural setting

observer bias:  when observations may be skewed to align with observer expectations

population:  overall group of individuals that the researchers are interested in

sample:  subset of individuals selected from the larger population

survey:  list of questions to be answered by research participants—given as paper-and-pencil questionnaires, administered electronically, or conducted verbally—allowing researchers to collect data from a large number of people

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• Rat man.  Provided by : Wikipedia.  Located at :  https://en.wikipedia.org/wiki/Rat_Man#Legacy .  License :  CC BY-SA: Attribution-ShareAlike
• Case study in psychology.  Provided by : Wikipedia.  Located at :  https://en.wikipedia.org/wiki/Case_study_in_psychology .  License :  CC BY-SA: Attribution-ShareAlike
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• Open access
• Published: 06 September 2024

Motivations of family advisors in engaging in research to improve a palliative approach to care for persons living with dementia: an interpretive descriptive study

• Stephanie Lucchese 1 , 2 ,
• Marie-Lee Yous 1 ,
• Julia Kruizinga 1 ,
• Shirin Vellani 2 , 3 ,
• Vanessa Maradiaga Rivas 1 ,
• Bianca Tétrault 4 ,
• Pam Holliday 1 ,
• Carmel Geoghegan 5 ,
• Danielle Just 2 ,
• Tamara Sussman 4 ,
• Rebecca Ganann 1 &
• Sharon Kaasalainen 1  

Research Involvement and Engagement volume  10 , Article number:  94 ( 2024 ) Cite this article

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A Strategic Guiding Council (SGC) was created within a Family Carer Decisions Support study, to engage family carers of persons with advanced dementia as advisors to inform the design and implementation of the study. The SGC consists of an international group of family advisors from Canada, the Republic of Ireland, the United Kingdom, the Netherlands, and the Czech Republic. There are limited studies that have explored the integration of Patient and Public Involvement (PPI) in dementia research, end-of-life care and long-term care. Therefore, this study explores PPI engagement in health research with family carers to understand further their interest in being involved in the SCG within the FCDS intervention which is focused on supporting caregivers to make decisions about end-of-life care for residents with advanced dementia.

This study utilized an interpretive descriptive design and explored the motivations of ten family advisors from Canada, the Republic of Ireland, the United Kingdom, and the Netherlands in being part of the SGC. Semi-structured interviews were conducted by phone or videoconferencing and were recorded, transcribed, and analyzed using thematic analysis.

Three themes generated from the findings of the study were (1) engaging in reciprocal learning; (2) using lived experience to support other family carers; and (3) creating a collective momentum for advocacy and change.

Conclusions

Family carers motivations to being part of the SCG was driven by their intent to help carers navigate the health system and to create a psychosocial support system for other carers experiencing end-of-life with their loved ones. Being part of the SCG provided a benefit to family carers which provided a venue for them to contribute meaningful information from their experience, learn from other health professionals, research and other advisors and an avenue for advocacy work to improve access to end-of-life care supports through education. To our knowledge, this is the first study that explores the motivations of an international group of family advisors’ engagement in health research to promote integration of a palliative approach to dementia care in long-term care homes. This study further contributes to the literature from an international perspective the importance of PPI in research. Further research is warranted that explores PPI in research to improve access to end-of-life supports.

Plain English summary

Patient and public involvement (PPI) in research has been growing worldwide and ensures that research conducted is relevant to the needs of patients. Within the Family Carer Decisions Support study, we created a Strategic Guiding Council (SGC) to engage family carers of persons with advanced dementia as advisors to improve access to a palliative approach to care. The SGC includes family advisors from Canada, the Republic of Ireland, the United Kingdom, the Netherlands, Italy and the Czech Republic. The goal of the strategy was to engage with family advisors in research activities to improve access to a palliative approach and quality of care provided to people with dementia receiving end-of-life care. Including patients and family in research is extremely important, therefore our aim in this study was to explore family advisors’ motivations to engaging in the SGC. Family advisors reported encountering challenges with navigating the health system with end-of-life care and they chose to participate in the SGC to support other carers who are experiencing a similar situation. Being part of the SGC also provided the family advisors with an avenue to advocate on the importance of improving access to end-of-lifesupports and the opportunity to learn from other advisors, health professionals and researchers.

Peer Review reports

Introduction

Patient and Public Involvement (PPI) in research has been growing internationally due to efforts to ensure that health research is relevant, meaningful and impactful for patients and the public [ 1 ]. PPI ensures studies are focused on patient-identified priorities and encourages patients and their family/friends to be proactive partners in all stages of the research process: study design, intervention implementation, interpretation and developing of findings and knowledge translation [ 2 , 3 ]. PPI values a person’s lived experience and reported benefits include improvement in patient experiences, high quality health care and ensuring research funding is allocated to studies that are relevant and deemed a priority to patients and the public [ 4 , 5 ]. Most importantly, PPI ensures that work is being carried out with or by members of the public, rather than for them or about them.

The inclusion of PPI in health research has been deemed a priority in many countries [ 6 ]. The United Kingdom has made PPI participation a requirement to increase community involvement in health service planning and decision making in the delivery of health initiatives and research [ 6 ]. Similarly, in Canada, the Canadian Institute for Health Research (CIHR) developed partnerships with funding agencies to develop a Strategy for Patient-Oriented Research to improve health outcomes by promoting the engagement of patients and focusing on priorities identified by patients [ 7 ]. PPI has been studied in stroke care [ 8 ], dialysis [ 9 ], mental health research [ 10 ] and has been growing within dementia research [ 11 ]. Findings from the Bethell et al. (2018) scoping review discussed the importance of collective learning from people with lived experience with dementia and reinforced the importance of challenging societal views that portray people with dementia as not fully capable of participating in research [ 11 ]. Although there is broad consensus on the importance of integrating PPI in health research, further research is warranted to explore the integration of PPI in dementia research, long term care (LTC) and end-of-life care to improve health outcomes for older adults living with dementia and their family carers through meaningful engagement in health research.

In order to improve the quality, relevance and uptake of research amongst family carers, PPI engagement was integrated within the Family Carer Decision Support (FCDS) mySupport study [ 12 , 13 , 14 ]. The FCDS intervention focused on supporting caregivers to make decisions about end-of-life care for residents with advanced dementia. Introducing a palliative approach to care promotes a comprehensive person-centered approach to care for residents during end-of-life through advance care planning, management of disease symptoms, psychosocial and spiritual care and bereavement support [ 15 ]. The FCDS study was implemented in Canada, the Republic of Ireland, the United Kingdom, the Netherlands, Czech Republic, and Italy during the COVID-19 pandemic. An international PPI panel, called The Strategic Guiding Council, was formed early on to help inform the design, implementation and evaluation of the FCDS intervention by advising the research team and sharing their experiences in caring for individuals living with advanced dementia in LTC. There were 15 people involved in the Strategic Guiding Council. These individuals met via Zoom at quarterly Strategic Guiding Council meetings. They were involved in reviewing draft intervention components such as the comfort care booklet, providing assistance in interpreting study findings, and offering recommendations for knowledge translation and dissemination activities [ 16 , 17 ].

To our knowledge, there are currently no research studies that have explored PPI engagement in health research within an international Strategic Guiding Council. In addition, there is little information in the literature that discusses how to engage and involve families in LTC research [ 18 , 19 ]. Meaningful engagement with family carers is an important area to focus on in research as it provides researchers with a unique perspective of their lived experience which can also lead to an improvement in research questions, facilitate knowledge transfer and promote trust [ 18 , 20 ]. Therefore, this qualitative study aimed to contribute to the literature on PPI engagement with family carers by exploring the motivations of family carers to become family advisors on the Strategic Guiding Council. It is imperative to explore the motivations of family carers in research for recruitment and retention purposes as they are important members of the research team who can provide feedback on the practicality and relevance of interventions. The research question was: What are family advisors’ motivations in working with a Strategic Guiding Council and research team to promote integration of a palliative approach to dementia care in LTC homes?

This study utilized Sally Thorne’s (2016) interpretive description methodology to address the research question. Interpretive description is grounded in a naturalistic inquiry and objective knowledge is unattainable through empirical analysis but rather, the participants and researcher construct meaning together [ 21 ]. Interpretive descriptive is known as a useful methodology to generate knowledge for health service research due to its focus on experiential knowledge and exploring human commonalities and differences [ 21 ]. This approach was suitable for this study to reflect on the diverse experiences of family carers in supporting persons living with dementia which shaped their motivations to engage in research as family advisors.

Convenience sampling [ 22 ] was used to locate participants who were interested in being a member of the Strategic Guiding Council to advise the FCDS study and share their viewpoint as family carers for individuals living with advanced dementia. Specifically, they met the following inclusion criteria: (a) family carer of a person with advanced dementia (living or passed away in the last five years); (b) 16 years of age or older; and (d) comfortable communicating in English.

Recruitment

Recruitment for the Strategic Guiding Council consisted of both passive and active recruitment strategies. We attempted to recruit participants from all six countries involved in the FCDS intervention, however we were unable to recruit family carers from Italy and the Czech Republic due to language barriers. Hence, we ended up with family carers from four of the six participating countries: Canada, United Kingdom, the Republic of Ireland and the Netherlands. The recruitment of family advisors to join the Strategic Guiding Council and research study was conducted through the completion of an Expression of Interest Form and country-specific recruitment flyer, which were posted at local organizations (i.e., LTC homes) for a period of two months between June to August 2020. The Expression of Interest Form and the Country-Specific Recruitment Flyers were also posted on the mySupport website. Family carers who were interested in participating in the Strategic Guiding Council completed the Expression of Interest Forms and once completed, the PPI study coordinator, along with the country-specific research representative, contacted eligible individuals who met the inclusion criteria.

Active recruitment strategies for the study consisted of staff working in LTC homes or nursing homes to share information to family carers regarding the Strategic Guiding Council and mySupport study following a recruitment script guideline developed by the research team. Verbal permission was sought from the family carers to have their contact information shared with the research team to discuss the Strategic Guiding Council and mySupport study further. A telephone or email recruitment script was used by research staff to inform interested family carers about the study, answer any questions and affirm their continued interest to participate. Family carers that provided consent to be part of the Strategic Guiding Council as family advisors were provided with an orientation, which was conducted by the PPI coordinator or the country-specific research representative either in-person or virtually. Two family advisors were included in this manuscript as co-authors as they contributed to writing and reviewing the manuscript.

Data collection

Demographic data such as country of residence, sex, age, and relationship to person living with dementia were collected electronically using LimeSurvey. Semi-structured interviews were conducted by the PPI coordinator or by the country specific research representative either on the telephone or Zoom videoconference platform based on participants’ preference from September 2020–2021. The interviewers were master’s prepared or graduate students in the field of nursing and health studies. Interviews were scheduled based on their preference for time in their respective time zones and within the first three months of joining the Strategic Guiding Council. Interviews were conducted in English and the country specific research coordinator was available to assist participants with translation support as a ‘buddy’. Participants took part in an interview in a quiet, private location of their choosing such as in their home. An interview guide was used to explore family carers’ motivation in working with a Strategic Guiding Council and research team and developed through a review of the literature for PPI concepts. Examples of interview questions were: What is your experience with palliative care? What is your experience working with research and what about your experience working on a panel or a committee? What is your understanding of a Strategic Guiding Council? The interviews lasted 30 to 40 min and were audio-recorded and transcribed verbatim. Identifying information was removed and transcripts were reviewed against the recording for accuracy [ 23 ]. Participants’ identity was protected throughout the study and all study information that was recorded, transcribed and analyzed were kept in a locked cabinet or stored in a password protected, encrypted file.

Data analysis

Demographic data were analyzed using counts for categorical data and means and standard deviations (SD) for continuous data. The first stage of data analysis consisted of “sorting and organizing” [21 pp 156] the data by reading the transcripts. In the second stage, “making sense of pattern” [21 pp 163], the authors (SL and JK) analyzed two transcripts independently and generated a code list and themes. The authors (SL and JK) met together and discussed their preliminary findings. Descriptive codes were merged to develop themes or groupings [ 21 ]. The findings were then discussed with additional research team members (SV, VM and SK) and themes were defined based on consensus. Once consensus was gained within the research team, SL proceeded with analyzing the remaining transcripts using Dedoose qualitative software. For the final stage, “transforming pattern into findings” [21 pp 173] the author SL met frequently with the research team during data analysis to review the findings and themes generated. The final written conceptualization of the findings was reviewed by the research team and presented in this study [ 21 ].

Ethical considerations

This study was approved by local research ethics board (#5837). Research was conducted following the standards outlined by the Tri- Council Policy Statement for Ethical Conduct for Research Involving Humans [ 24 ]. Written and verbal informed consent was sought from all participants with the understanding that their participation in the study would not influence them or their relatives care at the LTC home. Each participant had experience as a family carer for a relative with dementia and due to this, were sensitive to emotional reactions. Therefore, the sensitive interviewing techniques were employed, which included validation of emotions and experiences of the interviewer, frequent breaks and if needed, discontinuation of the interview.

Rigour and trustworthiness

Several strategies were employed by the research team to enhance trustworthiness and rigour in the study. The research team participated in co-constructing knowledge by interpreting participants experiences from the semi-structured interviews. Researcher triangulation was achieved by meeting frequently with the research team to discuss data analysis and themes developed. Engaging in triangulation allowed the researcher to confirm constructed perception of an event or process [ 21 ]. An audit trial was maintained by the primary author to establish confirmability of the research findings and ensure the findings are based on participants responses instead of the researchers’ own preconceptions and biases.

Characteristics of sample

A total of 10 family advisors shared their perspectives in being part of the Strategic Guiding Council for the mySupport Family Carer Decision Support Study. There was representation from four countries, Canada ( n  = 4), United Kingdom ( n  = 1), the Netherlands ( n  = 1), and the Republic of Ireland ( n  = 4). Demographics were missing for some advisors ( n  = 5). Half of the advisors were female ( n  = 5). The mean age of advisors was 65.6 years (SD = 5.0) and most were caring for a spouse or parent. Most of the advisors reported having education at the post-secondary level (i.e., college, bachelor’s degree, masters).

Overview of findings

Three themes represented the family advisors’ motivation in engaging with the Strategic Guiding Council: (1) engaging in reciprocal learning; (2) using lived experience to support other family carers ; and (3) creating a collective momentum for advocacy and change.

Theme 1. Engaging in reciprocal learning

This first theme explains how family advisors were motivated to be engaged with the Strategic Guiding Council and research team to help and also learn about health and social services from other care partner experiences. This was identified by one advisor who shared: “I have experiences that might be valuable, but other people on the council may have experiences that could help me as well” (P2, Canada). A family advisor expressed that engaging with health professionals on the research team (e.g., nurses, physicians, social workers) allowed for reciprocal learning, where the care partner learned from the health professional and the health professional had the chance to learn from caregivers:

I also very much enjoy the interaction of working with professionals [health]. I love the learning experience that both of us can get and ultimately again as we discussed before, what I learn I can then take back to the people who can gain the most from what I learn. Which are the people suffering the condition. (P5, United Kingdom)

By engaging with the Strategic Guiding Council, participants mentioned that it provided them with the opportunity to learn about interventions and programs that are happening in other countries. Family advisors further endorsed that being involved with the Strategic Guiding Council, not only did it promote reciprocal learning between the caregiver and healthcare team, it also allowed family advisors to be active participants in their loved one’s care and not “only visitors” (P6, The Netherlands).

Theme 2. Using lived experience to support other family carers

This theme describes the participants’ lived experience as a family carer of a person with dementia and how their experience was a driver for engaging with the Strategic Guiding Council. Based on their own experiences, family advisors expressed a strong desire to create a circle of moral and psychosocial support system for other carers. Advisors endorsed that their personal experience with a loved one gave them “the drive to do something” (P10, the Republic of Ireland). This revealed how they reflected on their previous experiences in supporting persons with dementia to inform necessary changes for other family carers. The advisor further elaborated: “I thought for anybody that’s going through it, you know I’m going to try and do something to help improve this”. This sentiment was further expressed by another participant:

I think just giving my personal experience that I’ve had in Long Term Care. I watched how my father lived and how his end of life was and just want to help in any way that I can for other families going through such a difficult time. (P1, Canada)

Family advisors expressed experiencing challenges with obtaining appropriate end-of-life care for their loved one due to clinicians working in care homes limited knowledge regarding a palliative approach to care, which contributed to negative experiences. One participant mentioned, “My mom’s GP [general practitioner] denied her Palliative Care because he said she didn’t have Cancer” (P9, The Republic of Ireland). The advisor further attributed that the lack of information from the physician led to feelings of frustration but then ‘sparked something within’, which led the participant to determine that: “rather than fighting the system, I educated myself. I just decided I would speak out and tell mom’s story to change those mistakes and hopefully make a difference” (P9, The Republic of Ireland)

Another advisor expressed a similar situation where she experienced challenges with her husband receiving adequate pain management despite advocating on his behalf to stakeholders in his long-term care home and physician. The advisor shared:

With my husband, the home didn’t know anything about Palliative Care and we became increasingly desperate because he was having such terrible pain. Awful pain, and it was just awful to see his body twisting. I was so desperate. I tried to get him into a hospice and they had no beds and I turned to the Palliative Care nursing team that cover residents around the country side and towns. They said they can’t come in and help unless they are asked to by the GP that covers the residential home and I asked him [GP] and he wouldn’t speak to me. (P5, United Kingdom)

After advocating on behalf of her husband for adequate end-of-life care, the advisor further shared:

It was only the day before he died that he was completely pain free. The last few days of his life he had some pain control. That shouldn’t have happened, he should have had pain control months before, or weeks before he became in such a terrible state. That’s why I’m desperate that it doesn’t happen to other people. (P5, United Kingdom)

Although many family advisors shared negative experiences with end-of-life care, an advisor described end-of-life care as a “beautiful, worthwhile thing to be a part of” (P2, Canada). She further describes how end-of-life care has been a large part of her life since she was a caregiver to family members who passed away in LTC. Therefore, she hopes to be able to help others going through a difficult moment by sharing her experience:

It’s worthwhile to be able to share the things you know and share your experience with families to have when they are facing this end-of-life care phase. It’s a really difficult circumstance to be in and it’s very complex it’s nothing that you can rehearse for… I think that my experience could be valuable to other people. (P2, Canada)

A strong motivating factor that led advisors to engage with the Strategic Guiding Council and research team was to help others navigate the health system. Advisors expressed encountering challenges navigating the health system to ensure that their family member with dementia was provided with the treatment that they needed. Many endorsed a motivation to be engaged with the Strategic Guiding Council was to help other caregivers navigate the health system. An advisor shared: "I think it is in helping people find their way through different systems … as they begin to navigate it and know the important things to look for and what things to just let go" (P4, Canada).

In addition, an advisor also learned from her experience that it is important to seek help early on and engage in discussions about dying early on in a person’s care until they are at the end-of-life. She shared:

My mission is that what happened to my husband never happens to other people. They get to that stage and understand and get help quickly … definitely get help early on and leave it sort of until its Palliative and it can’t be controlled. They need to know earlier on. (P5, United Kingdom)

A family advisor further described supporting a family member with dementia as the power of attorney and described the process as not black or white. The advisor disclosed the challenges and complexities of being power of attorney, especially in relation with capacity of understanding concerns. Supporting families navigate these concerns was a motivating factor for the advisor to join the Strategic Guiding Council. One advisor expressed: “To think that I could help family members understand what might be ahead of them, I thought was interesting and useful…so that was the motivation” (P8, The Republic of Ireland). Overall, participants identified the importance of sharing their knowledge and experience as a means of enlightening others and helping other carers in their caregiving journey.

Theme 3. Creating a collective momentum for advocacy and change

This theme describes the importance of advocacy to improve access to palliative care supports and education to reduce stigma in end-of-life care. Family advisors are motivated to be engaged with the Strategic Guiding Council to be able to use their voice to improve the quality of care provided to individuals with dementia and use their voices to “support or influence the direction of the program (P7, The Republic of Ireland). An advisor shared:

Advocate for elderly people to have Comfort Care, even if it is not in the last part of their lives. They have to have Comfort Care even when the disease of Dementia comes, to have all the people around you and try to make the life of the person as comfortable as can be. (P6, The Netherlands)

An advisor shared how being involved in their loved ones care brought fulfillment in their life through the advocacy work they are engaged in:

I look back now and I think it’s probably the best thing I have achieved in my life. Plus, it’s opened up my world to meeting amazing people. Like even now talking to you today [researcher], like if mom hadn’t come into my life, I wouldn’t be doing any of this [advocacy]. I don’t’ know what I’d be doing but I certainly wouldn’t’ be worrying about Dementia and end of life or having anything to do with it. It’s completely the opposite to what my life was. (P9, The Republic of Ireland)

Despite programs developed to bring more awareness regarding dementia care, advisors endorsed that there is still stigma that exists regarding dementia.

I don’t know about other countries but in the Republic of Ireland there’s not as much of a stigma as there was but there’s definitely still a stigma around Dementia or Alzheimer’s. There’s definitely huge education needed for the general public as well. It’s getting better. People are more aware, as well as there are more supports. But there’s still … you know, it’s one of those things that some people don’t want to talk about. (P10, The Republic of Ireland)

The Strategic Guiding Council was identified as an opportunity for advisors to be engaged in research initiatives and cross-country collaborations to improve integration of a palliative approach to care for individuals with dementia. An advisor who also had a long career in research shared:

I like the idea that it’s an international project and it will be interesting to see what the results are and also to make a difference for families that have family members or friends who have Dementia and reach end of life. It would be nice to make a difference if we can somehow. I like fairly efficient things, but I want to see some real impact you know collectively from this research project. I’ve been doing research for forty-five years so I know that lots of things take a long time to make a difference but I’d like to see some real outcomes from the research. (P3, Canada)

Through engagement in the Strategic Guiding Council and research team, a collective momentum for change can be made to improve the care being provided to people with dementia and provide person-centered care. An advisor emphasized the importance for health professionals to explore the wishes of the person with dementia and their family members to improve quality of life:

The nurses and the staff must be aware of the wishes of patients and family of the patients so they can be part of the last few times [moments] of the patient’s life and try to make it more about the person and family want to have and not the wishes of the organization to be efficien.t (P6, The Netherlands)

This study sought to explore the perspectives of family advisors’ motivations in working with a Strategic Guiding Council and research team to promote integration of a palliative approach to improve dementia care in LTC homes. To our knowledge, this is the first study which explores the perspectives of family carers motivations to participate in PPI research in an international Strategic Guiding Council, from four participating countries (Canada, United Kingdom, Republic of Ireland, and the Netherlands). The Strategic Guiding Council international study provided the advisors with an opportunity to be engaged in cross-country collaborations to improve end-of-life care for individuals with dementia and support the research team in determining opportunities to improve patient and family engagement.

The study findings are relevant to healthcare as it provides the perspectives of family carers motivation in being partners in care and research, which is an area of research that requires further exploration in LTC settings [ 18 ]. Involving family and patients in the development and implementation of research, enriches the relevance of the study by generating interventions that are sustainable and translatable to the community of interest [ 25 ]. PPI involvement is a growing area in health research and ensures that research is conducted in a manner that is relevant and meaningful to patients and the public [ 26 , 27 ]. Warner et al. [ 28 ] emphasizes the importance of involving patients and families in their care to ensure care reflects their needs and values. Through patient and family integration in the planning process, it can lead to positive patient end-of-life and family bereavement outcomes [ 28 ].

Family advisors in the study discussed how their lived experience providing care for a person with dementia was a motivating factor to wanting to be engaged with a Strategic Guiding Council and research team. Participants wanted to use their experience to help others who are going through difficult situations. Similar to the findings in our study, a study conducted by Cashin et al. [ 29 ] explored family’s motivation to being engaged in research and education development with health professionals, which was driven by their desire to improve their knowledge and promote awareness of dementia. Findings from the study are also consistent with family centered research that has been conducted in different disciplines. O’Keeffe et al. [ 30 ] explored family members motivation to being engaged in research in the field of adolescent mental health. A commonly cited motivation for being engaged with a research team was a desire to help others going through similar difficulties [ 30 ].

Advisors in the study discussed challenges with obtaining appropriate referral for end-of-life care or palliative treatment (i.e., pain management) for their loved one which was a driver for them to want to be engaged in a Strategic Guiding Council. Advisors reported stakeholders in care homes and health professionals limited knowledge regarding a palliative approach to care as a reason for experiencing challenges with obtaining a referral or treatment. This finding is consistent in the literature which discusses the need to expand education on end-of-life care amongst health professionals of all disciplines, patients and family [ 31 , 32 , 33 ]. In a study from Bolt et al. [ 34 ], the author emphasizes that nurses who provide care to people with dementia have a crucial role in identifying end-of-life needs and observing changes in clinical health status due to their frequent interactions with residents. However, it is imperative to explore effective education opportunities to promote capacity building within health professionals working in long-term care homes to provide a palliative approach to care to improve the health service delivery of older adults receiving end-of-life care.

PPI research is critical and it is imperative that researchers aim to achieve actionable outcomes with the participation of patients and public participation in research [ 11 ]. Advisors in the study disclosed how they want to be involved with the research team to be able to ‘see some real impact’ from the research projects they are engaged with. In a systematic review conducted by Domecq et al. [ 35 ], patient engagement in the planning and execution of research may improve its translation into clinical practice and may yield meaningful reports that’s written in a language that is understandable for participants and the community, thus supporting knowledge translation. Increasing participatory action research amongst patients and family to improve end-of-life careand dementia care may improve a person’s quality of life through the inclusion of individuals with lived experience to make program improvement recommendations [ 11 ]. Thus, reinforcing the importance of an interdisciplinary and unified approach to research.

Results from this study generated implications for research, policy, and practice. Research and policy implications generated from the study further emphasizes the importance of ensuring PPI is integrated in LTC settings and international research projects to further improve the implementation of a palliative approach to care within nursing homes and improve the quality of life of residents in the late phase of their illness. Advisors in the Strategic Guiding Council supported the FCDS study and were actively involved in creating guides for families and education materials along with the research team. Practice implications from the study reinforces the importance of involving family members in the decision-making process of their loved one’s goals of care during end of life. Families who are not provided the opportunity to discuss their relative’s illness, prognosis, and treatment experience difficulties with decision-making processes, feel uncertainty about the illness and may also feel unprepared for their relative’s death [ 31 ]. Exploring the motivations of family carers allowed the research team to engage family carers meaningfully by ensuring that their perspectives and lived experiences were incorporated in the FCDS research study. In addition, this study further contributes to the limited body of literature that explores PPI research amongst family caregivers in LTC [ 18 , 19 ].

Strengths and limitations

A major strength of this study is that the Strategic Guiding Council includes advisors from four countries with unique contexts with regards to healthcare systems and available services and presents findings PPI research within an international team. Additional study strengths include strategies to enhance trustworthiness of the study findings which consisted of meeting with the research team to engage in debriefing to ensure reflexivity and conformability with the research findings. The authors in the study also utilized triangulation to ensure rigour, which allowed for the confirmation of the findings and different perspective with the phenomena of interest [ 36 ]. Despite the research study utilizing a small sample of individuals from participating countries, this study offered an international perspective that explored the motivation of family advisors’ in working with a Strategic Guiding Council and research team which has not be explored before. Future qualitative research could include a large sample size and more countries beyond Canada and Europe. Advisors had to be comfortable in speaking in English, however a ‘buddy’ such as a research coordinator was assigned to those who required some translation. Despite the use of a ‘buddy’, due to limited time and resources we were unable to recruit family advisors in Italy and Czech Republic. Therefore, we were unable to include advisors in the study due to their limited proficiency in English. Future research should have measures in place to allow participants to take part in interviews in the language of their choosing. This study was also conducted during the COVID-19 pandemic and therefore future research should explore the impact of the pandemic with family caregivers’ participation in research. Additionally, the findings reinforce that family caregivers are motivated to be active participants in their loved ones care and want to be involved in meaningful work through research engagement. Therefore, researchers should aim to explore further family caregivers role in research to support in recruitment and to conduct meaningful research to improve health service delivery for patients.

This study contributed to the enrichment of literature by exploring PPI in research from an international perspective. Motivations that led to engagement with the Strategic Guiding Council and research team consisted of family advisors’ using lived experience to support other family carers and the motivation to engage in reciprocal learning with other care partners and research professionals. While many Family Advisors had strong motivations to be engaged with the Strategic Guiding Council and research team, many endorsed aspirations to support care partners navigate through the complexity of the health system and create a collective momentum for advocacy and change to improve end of life dementia care through their involvement with the Strategic Guiding Council.

Data availability

No datasets were generated or analysed during the current study.

Abbreviations

Patient and Public Involvement

Strategic Guiding Council

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Acknowledgements

The authors wish to thank all the members of the Strategic Guiding Council and all the international researchers in the mySupport study. This study was supported by EU Joint Programme—Neurodegenerative Disease (JPND) project. The project is supported through the following funding organisations under the aegis of JPND— (Canada, Canadian Institutes of Health Research; Czech Republic, Ministry of Education, Youth and Sport; Ireland, Health Research Board; The Netherlands, ZonMW; United Kingdom, Alzheimer’s Society)— www.jpnd.eu .

This is an EU Joint Programme -Neurodegenerative Disease Research (JPND) project. The project is supported through the following funding organisations under the aegis of JPND - www.jpnd.eu : Canada, Canadian Institutes of Health Research (grant number 161462); the Czech Republic, Ministry of Education, Youth and Sport (grant number 8F19005); Netherlands, Netherlands Organisation for Health Research and Development (grant number 733051084); Republic of Ireland, Health Research Board (grant number JPND- HSC-2018–002); the UK, Alzheimer’s Society (grant number AS-IGF-17–001). The funders had no role in the design of the study, and will have no role in its execution, analysis, interpretation of the data or write up.

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SK is the principal investigator of the study. SL, JK, SV, VM and SK were involved in data analysis. SL and ML drafted the initial version of the manuscript. All authors (SK, SL, ML, JK, SV, VM, BT, PH, CG, DJ, TS, RG) have read, made critical revisions, and approved the final manuscript.

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Faculty of Health Sciences, School of Nursing, McMaster University, 1280 Main Street West, Hamilton, Ontario, L8S 3Z1, CanadaStephanie Lucchese RN, MN, Marie-Lee Yous RN, PhD Julia Kruizinga RN, MScN Vanessa Maradiaga Rivas RN, MScN, Pam Holliday BSc(PT), MSc, Rebecca Ganann RN, PhD, Sharon Kaasalainen RN, PhD.

Lawrence S. Bloomberg, Faculty of Nursing, University of Toronto, 155 College Street, Toronto, Ontario, M5T 1P8, CanadaStephanie Lucchese RN, MN, Shirin Vellani NP, PhD, Danielle Just PhD.

Virtual Behavioral Medicine Program, Toronto Rehabilitation Institute – University Health Network, 550 University Avenue, Toronto, Ontario, M5G 2A2, Canada Shirin Vellani NP, PhD.

Faculty of Arts, School of Social Work, McGill University, 550 Sherbrooke Ouest H3A B9, Montreal, Quebec, H3A 1B9, CanadaBianca Tétrault BA, MSW, Tamara Sussman, MSW, PhD.

Dementia Ireland, Keeping the Spotlight on Dementia and End of Life - Oughterard, Co. Galway, Ireland Carmel Geoghegan

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Correspondence to Sharon Kaasalainen .

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Lucchese, S., Yous, ML., Kruizinga, J. et al. Motivations of family advisors in engaging in research to improve a palliative approach to care for persons living with dementia: an interpretive descriptive study. Res Involv Engagem 10 , 94 (2024). https://doi.org/10.1186/s40900-024-00623-w

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• Volume 58, Issue 17
• Where is the research on sport-related concussion in Olympic athletes? A descriptive report and assessment of the impact of access to multidisciplinary care on recovery
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• http://orcid.org/0000-0002-3298-5719 Thomas Romeas 1 , 2 , 3 ,
• http://orcid.org/0000-0003-1748-7241 Félix Croteau 3 , 4 , 5 ,
• Suzanne Leclerc 3 , 4
• 1 Sport Sciences , Institut national du sport du Québec , Montreal , Quebec , Canada
• 2 School of Optometry , Université de Montréal , Montreal , Quebec , Canada
• 3 IOC Research Centre for Injury Prevention and Protection of Athlete Health , Réseau Francophone Olympique de la Recherche en Médecine du Sport , Montreal , Quebec , Canada
• 4 Sport Medicine , Institut national du sport du Québec , Montreal , Quebec , Canada
• 5 School of Physical and Occupational Therapy , McGill University , Montreal , Quebec , Canada
• Correspondence to Dr Thomas Romeas; thomas.romeas{at}umontreal.ca

Objectives This cohort study reported descriptive statistics in athletes engaged in Summer and Winter Olympic sports who sustained a sport-related concussion (SRC) and assessed the impact of access to multidisciplinary care and injury modifiers on recovery.

Methods 133 athletes formed two subgroups treated in a Canadian sport institute medical clinic: earlier (≤7 days) and late (≥8 days) access. Descriptive sample characteristics were reported and unrestricted return to sport (RTS) was evaluated based on access groups as well as injury modifiers. Correlations were assessed between time to RTS, history of concussions, the number of specialist consults and initial symptoms.

Results 160 SRC (median age 19.1 years; female=86 (54%); male=74 (46%)) were observed with a median (IQR) RTS duration of 34.0 (21.0–63.0) days. Median days to care access was different in the early (1; n SRC =77) and late (20; n SRC =83) groups, resulting in median (IQR) RTS duration of 26.0 (17.0–38.5) and 45.0 (27.5–84.5) days, respectively (p<0.001). Initial symptoms displayed a meaningful correlation with prognosis in this study (p<0.05), and female athletes (52 days (95% CI 42 to 101)) had longer recovery trajectories than male athletes (39 days (95% CI 31 to 65)) in the late access group (p<0.05).

Conclusions Olympic athletes in this cohort experienced an RTS time frame of about a month, partly due to limited access to multidisciplinary care and resources. Earlier access to care shortened the RTS delay. Greater initial symptoms and female sex in the late access group were meaningful modifiers of a longer RTS.

• Brain Concussion
• Cohort Studies
• Retrospective Studies

Data availability statement

Data are available on reasonable request. Due to the confidential nature of the dataset, it will be shared through a controlled access repository and made available on specific and reasonable requests.

https://doi.org/10.1136/bjsports-2024-108211

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WHAT IS ALREADY KNOWN ON THIS TOPIC

Most data regarding the impact of sport-related concussion (SRC) guidelines on return to sport (RTS) are derived from collegiate or recreational athletes. In these groups, time to RTS has steadily increased in the literature since 2005, coinciding with the evolution of RTS guidelines. However, current evidence suggests that earlier access to care may accelerate recovery and RTS time frames.

WHAT THIS STUDY ADDS

This study reports epidemiological data on the occurrence of SRC in athletes from several Summer and Winter Olympic sports with either early or late access to multidisciplinary care. We found the median time to RTS for Olympic athletes with an SRC was 34.0 days which is longer than that reported in other athletic groups such as professional or collegiate athletes. Time to RTS was reduced by prompt access to multidisciplinary care following SRC, and sex-influenced recovery in the late access group with female athletes having a longer RTS timeline. Greater initial symptoms, but not prior concussion history, were also associated with a longer time to RTS.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

Considerable differences exist in access to care for athletes engaged in Olympic sports, which impact their recovery. In this cohort, several concussions occurred during international competitions where athletes are confronted with poor access to organised healthcare. Pathways for prompt access to multidisciplinary care should be considered by healthcare authorities, especially for athletes who travel internationally and may not have the guidance or financial resources to access recommended care.

Introduction

After two decades of consensus statements, sport-related concussion (SRC) remains a high focus of research, with incidence ranging from 0.1 to 21.5 SRC per 1000 athlete exposures, varying according to age, sex, sport and level of competition. 1 2 Evidence-based guidelines have been proposed by experts to improve its identification and management, such as those from the Concussion in Sport Group. 3 Notably, they recommend specific strategies to improve SRC detection and monitoring such as immediate removal, 4 prompt access to healthcare providers, 5 evidence-based interventions 6 and multidisciplinary team approaches. 7 It is believed that these guidelines contribute to improving the early identification and management of athletes with an SRC, thereby potentially mitigating its long-term consequences.

Nevertheless, evidence regarding the impact of SRC guidelines implementation remains remarkably limited, especially within high-performance sport domains. In fact, most reported SRC data focus on adolescent student-athletes, collegiate and sometimes professional athletes in the USA but often neglect Olympians. 1 2 8–11 Athletes engaged in Olympic sports, often referred to as elite amateurs, are typically classified among the highest performers in elite sport, alongside professional athletes. 12 13 They train year-round and uniquely compete regularly on the international stage in sports that often lack professional leagues and rely on highly variable resources and facilities, mostly dependent on winning medals. 14 Unlike professional athletes, Olympians do not have access to large financial rewards. Although some Olympians work or study in addition to their intensive sports practice, they can devote more time to full-time sports practice compared with collegiate athletes. Competition calendars in Olympians differ from collegiate athletes, with periodic international competitions (eg, World Cups, World Championships) throughout the whole year rather than regular domestic competitions within a shorter season (eg, semester). Olympians outclass most collegiate athletes, and only the best collegiate athletes will have the chance to become Olympians and/or professionals. 12 13 15 In Canada, a primary reason for limited SRC data in Olympic sports is that the Canadian Olympic and Paralympic Sports Institute (COPSI) network only adopted official guidelines in 2018 to standardise care for athletes’ SRC nationwide. 16 17 The second reason could be the absence of a centralised medical structure and surveillance systems, identified as key factors contributing to the under-reporting and underdiagnosis of athletes with an SRC. 18

Among the available evidence on the evolution of SRC management, a 2023 systematic review and meta-analysis in athletic populations including children, adolescents and adults indicated that a full return to sport (RTS) could take up to a month but is estimated to require 19.8 days on average (15.4 days in adults), as opposed to the initial expectation of approximately 10.0 days based on studies published prior to 2005. 19 In comparison, studies focusing strictly on American collegiate athletes report median times to RTS of 16 days. 9 20 21 Notably, a recent study of military cadets reported an even longer return to duty times of 29.4 days on average, attributed to poorer access to care and fewer incentives to return to play compared with elite sports. 22 In addition, several modifiers have also been identified as influencing the time to RTS, such as the history of concussions, type of sport, sex, past medical problems (eg, preinjury modifiers), as well as the initial number of symptoms and their severity (eg, postinjury modifiers). 20 22 The evidence regarding the potential influence of sex on the time to RTS has yielded mixed findings in this area. 23–25 In fact, females are typically under-represented in SRC research, highlighting the need for additional studies that incorporate more balanced sample representation across sexes and control for known sources of bias. 26 Interestingly, a recent Concussion Assessment, Research and Education Consortium study, which included a high representation of concussed female athletes (615 out of 1071 patients), revealed no meaningful differences in RTS between females and males (13.5 and 11.8 days, respectively). 27 Importantly, findings in the sporting population suggested that earlier initiation of clinical care is linked to shorter recovery after concussion. 5 28 However, these factors affecting the time to RTS require a more thorough investigation, especially among athletes engaged in Olympic sports who may or may not have equal access to prompt, high-quality care.

Therefore, the primary objective of this study was to provide descriptive statistics among athletes with SRC engaged in both Summer and Winter Olympic sport programmes over a quadrennial, and to assess the influence of recommended guidelines of the COPSI network and the fifth International Consensus Conference on Concussion in Sport on the duration of RTS performance. 16 17 Building on available evidence, the international schedule constraints, variability in resources 14 and high-performance expectation among this elite population, 22 prolonged durations for RTS, compared with what is typically reported (eg, 16.0 or 15.4 days), were hypothesised in Olympians. 3 19 The secondary objective was to more specifically evaluate the impact of access to multidisciplinary care and injury modifiers on the time to RTS. Based on current evidence, 5 7 29 30 the hypothesis was formulated that athletes with earlier multidisciplinary access would experience a faster RTS. Regarding injury modifiers, it was expected that female and male athletes would show similar time to RTS despite presenting sex-specific characteristics of SRC. 31 The history of concussions, the severity of initial symptoms and the number of specialist consults were expected to be positively correlated to the time to RTS. 20 32

Participants

A total of 133 athletes (F=72; M=61; mean age±SD: 20.7±4.9 years old) who received medical care at the Institut national du sport du Québec, a COPSI training centre set up with a medical clinic, were included in this cohort study with retrospective analysis. They participated in 23 different Summer and Winter Olympic sports which were classified into six categories: team (soccer, water polo), middle distance/power (rowing, swimming), speed/strength (alpine skiing, para alpine skiing, short and long track speed skating), precision/skill-dependent (artistic swimming, diving, equestrian, figure skating, gymnastics, skateboard, synchronised skating, trampoline) and combat/weight-making (boxing, fencing, judo, para judo, karate, para taekwondo, wrestling) sports. 13 This sample consists of two distinct groups: (1) early access group in which athletes had access to a medical integrated support team of multidisciplinary experts within 7 days following their SRC and (2) late access group composed of athletes who had access to a medical integrated support team of multidisciplinary experts eight or more days following their SRC. 5 30 Inclusion criteria for the study were participation in a national or international-level sports programme 13 and having sustained at least one SRC diagnosed by an authorised healthcare practitioner (eg, physician and/or physiotherapist).

Clinical context

The institute clinic provides multidisciplinary services for care of patients with SRC including a broad range of recommended tests for concussion monitoring ( table 1 ). The typical pathway for the athletes consisted of an initial visit to either a sports medicine physician or their team sports therapist. A clinical diagnosis of SRC was then confirmed by a sports medicine physician, and referral for the required multidisciplinary assessments ensued based on the patient’s signs and symptoms. Rehabilitation progression was based on the evaluation of exercise tolerance, 33 priority to return to cognitive tasks and additional targeted support based on clinical findings of a cervical, visual or vestibular nature. 17 The expert team worked in an integrated manner with the athlete and their coaching staff for the rehabilitation phase, including regular round tables and ongoing communication. 34 For some athletes, access to recommended care was fee based, without a priori agreements with a third party payer (eg, National Sports Federation).

• View inline

Main evaluations performed to guide the return to sport following sport-related concussion

Data collection

Data were collected at the medical clinic using a standardised injury surveillance form based on International Olympic Committee guidelines. 35 All injury characteristics were extracted from the central injury database between 1 July 2018 and 31 July 2022. This period corresponds to a Winter Olympic sports quadrennial but also covers 3 years for Summer Olympic sports due to the postponing of the Tokyo 2020 Olympic Games. Therefore, the observation period includes a typical volume of competitions across sports and minimises differences in exposure based on major sports competition schedules. The information extracted from the database included: participant ID, sex, date of birth, sport, date of injury, type of injury, date of their visit at the clinic, clearance date of unrestricted RTS (eg, defined as step 6 of the RTS strategy with a return to normal gameplay including competitions), the number and type of specialist consults, mechanism of injury (eg, fall, hit), environment where the injury took place (eg, training, competition), history of concussions, history of modifiers (eg, previous head injury, migraines, learning disability, attention deficit disorder or attention deficit/hyperactivity disorder, depression, anxiety, psychotic disorder), as well as the number of symptoms and the total severity score from the first Sport Concussion Assessment Tool 5 (SCAT5) assessment following SRC. 17

Following a Shapiro-Wilk test, medians, IQR and non-parametric tests were used for the analyses because of the absence of normal distributions for all the variables in the dataset (all p<0.001). The skewness was introduced by the presence of individuals that required lengthy recovery periods. One participant was removed from the analysis because their time to consult with the multidisciplinary team was extremely delayed (>1 year).

Descriptive statistics were used to describe the participant’s demographics, SRC characteristics and risk factors in the total sample. Estimated incidences of SRC were also reported for seven resident sports at the institute for which it was possible to quantify a detailed estimate of training volume based on the annual number of training and competition hours as well as the number of athletes in each sport.

To assess if access to multidisciplinary care modified the time to RTS, we compared time to RTS between early and late access groups using a method based on median differences described elsewhere. 36 Wilcoxon rank sum tests were also performed to make between-group comparisons on single variables of age, time to first consult, the number of specialists consulted and medical visits. Fisher’s exact tests were used to compare count data between groups on variables of sex, history of concussion, time since the previous concussion, presence of injury modifiers, environment and mechanism of injury. Bonferroni corrections were applied for multiple comparisons in case of meaningful differences.

To assess if injury modifiers modified time to RTS in the total sample, we compared time to RTS between sexes, history of concussions, time since previous concussion or other injury modifiers using a method based on median differences described elsewhere. 36 Kaplan-Meier curves were drawn to illustrate time to RTS differences between sexes (origin and start time: date of injury; end time: clearance date of unrestricted RTS). Trajectories were then assessed for statistical differences using Cox proportional hazards model. Wilcoxon rank sum tests were employed for comparing the total number of symptoms and severity scores on the SCAT5. The association of multilevel variables on return to play duration was evaluated in the total sample with Kruskal-Wallis rank tests for environment, mechanism of injury, history of concussions and time since previous concussion. For all subsequent analyses of correlations between SCAT5 results and secondary variables, only data obtained from SCAT5 assessments within the acute phase of injury (≤72 hours) were considered (n=65 SRC episodes in the early access group). 37 Spearman rank correlations were estimated between RTS duration, history of concussions, number of specialist consults and total number of SCAT5 symptoms or total symptom severity. All statistical tests were performed using RStudio (R V.4.1.0, The R Foundation for Statistical Computing). The significance level was set to p<0.05.

Equity, diversity and inclusion statement

The study population is representative of the Canadian athletic population in terms of age, gender, demographics and includes a balanced representation of female and male athletes. The study team consists of investigators from different disciplines and countries, but with a predominantly white composition and under-representation of other ethnic groups. Our study population encompasses data from the Institut national du sport du Québec, covering individuals of all genders, ethnicities and geographical regions across Canada.

Patient and public involvement

The patients or the public were not involved in the design, conduct, reporting or dissemination plans of our research.

Sample characteristics

During the 4-year period covered by this retrospective chart review, a total of 160 SRC episodes were recorded in 132 athletes with a median (IQR) age of 19.1 (17.8–22.2) years old ( table 2 ). 13 female and 10 male athletes had multiple SRC episodes during this time. The sample had a relatively balanced number of females (53.8%) and males (46.2%) with SRC included. 60% of the sample reported a history of concussion, with 35.0% reporting having experienced more than two episodes. However, most of these concussions had occurred more than 1 year before the SRC for which they were being treated. Within this sample, 33.1% of participants reported a history of injury modifiers. Importantly, the median (IQR) time to first clinic consult was 10.0 (1.0–20.0) days and the median (IQR) time to RTS was 34.0 (21.0–63.0) days in this sample ( table 3 ). The majority of SRCs occurred during training (56.3%) rather than competition (33.1%) and were mainly due to a fall (63.7%) or a hit (31.3%). The median (IQR) number of follow-up consultations and specialists consulted after the SRC were, respectively, 9 (5.0–14.3) and 3 (2.0–4.0).

Participants demographics

Sport-related concussion characteristics

Among seven sports of the total sample (n=89 SRC), the estimated incidence of athletes with SRC was highest in short-track speed skating (0.47/1000 hours; 95% CI 0.3 to 0.6), and lower in boxing, trampoline, water polo, judo, artistic swimming, and diving (0.24 (95% CI 0.0 to 0.5), 0.16 (95% CI 0.0 to 0.5), 0.13 (95% CI 0.1 to 0.2), 0.11 (95% CI 0.1 to 0.2), 0.09 (95% CI 0.0 to 0.2) and 0.06 (95% CI 0.0 to 0.1)/1000, respectively ( online supplemental material ). Furthermore, most athletes sustained an SRC in training (66.5%; 95% CI 41.0 to 92.0) rather than competition (26.0%; 95% CI 0.0 to 55.0) except for judo athletes (20.0% (95% CI 4.1 to 62.0) and 80.0% (95% CI 38.0 to 96.0), respectively). Falls were the most common injury mechanism in speed skating, trampoline and judo while hits were the most common injury mechanism in boxing, water polo, artistic swimming and diving.

Supplemental material

Access to care.

The median difference in time to RTS was 19 days (95% CI 9.3 to 28.7; p<0.001) between the early (26 (IQR 17.0–38.5) days) and late (45 (IQR 27.5–84.5) days) access groups ( table 3 ; figure 1 ). Importantly, the distribution of SRC environments was different between both groups (p=0.008). The post hoc analysis demonstrated a meaningful difference in the distribution of SRC in training and competition environments between groups (p=0.029) but not for the other comparisons. There was a meaningful difference between the groups in time to first consult (p<0.001; 95% CI −23.0 to −15.0), but no meaningful differences between groups in median age (p=0.176; 95% CI −0.3 to 1.6), sex distribution (p=0.341; 95% CI 0.7 to 2.8), concussion history (p=0.210), time since last concussion (p=0.866), mechanisms of SRC (p=0.412), the presence of modifiers (p=0.313; 95% CI 0.3 to 1.4) and the number of consulted specialists (p=0.368; 95% CI −5.4 to 1.0) or medical visits (p=0.162; 95% CI −1.0 to 3.0).

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Time to return to sport following sport-related concussion as a function of group’s access to care and sex. Outliers: below=Q1−1.5×IQR; above=Q3+1.5×IQR.

The median difference in time to RTS was 6.5 days (95% CI −19.3 to 5.3; p=0.263; figure 1 ) between female (37.5 (IQR 22.0–65.3) days) and male (31.0 (IQR 20.0–48.0) days) athletes. Survival analyses highlighted an increased hazard of longer recovery trajectory in female compared with male athletes (HR 1.4; 95% CI 1.4 to 0.7; p=0.052; figure 2A ), which was mainly driven by the late (HR 1.8; 95% CI 1.8 to 0.6; p=0.019; figure 2C ) rather than the early (HR 1.1; 95% CI 1.1 to 0.9; p=0.700; figure 2B ) access group. Interestingly, a greater number of female athletes (n=15) required longer than 100 days for RTS as opposed to the male athletes (n=6). There were no meaningful differences between sexes for the total number of symptoms recorded on the SCAT5 (p=0.539; 95% CI −1.0 to 2.0) nor the total symptoms total severity score (p=0.989; 95% CI −5.0 to 5.0).

Time analysis of sex differences in the time to return to sport following sport-related concussion in the (A) total sample, as well as (B) early, and (C) late groups using survival curves with 95% confidence bands and tables of time-specific number of patients at risk (censoring proportion: 0%).

History of modifiers

SRC modifiers are presented in table 2 , and their influence on RTP is shown in table 4 . The median difference in time to RTS was 1.5 days (95% CI −10.6 to 13.6; p=0.807) between athletes with none and one episode of previous concussion, was 3.5 days (95% CI −13.9 to 19.9; p=0.728) between athletes with none and two or more episodes of previous concussion, and was 2 days (95% CI −12.4 to 15.4; p=0.832) between athletes with one and two or more episodes of previous concussion. The history of concussions (none, one, two or more) had no meaningful impact on the time to RTS (p=0.471). The median difference in time to RTS was 4.5 days (95% CI −21.0 to 30.0; p=0.729) between athletes with none and one episode of concussion in the previous year, was 2 days (95% CI −10.0 to 14.0; p=0.744) between athletes with none and one episode of concussion more than 1 year ago, and was 2.5 days (95% CI −27.7 to 22.7; p=0.846) between athletes with an episode of concussion in the previous year and more than 1 year ago. Time since the most recent concussion did not change the time to RTS (p=0.740). The longest time to RTS was observed in the late access group in which athletes had a concussion in the previous year, with a very large spread of durations (65.0 (IQR 33.0–116.5) days). The median difference in time to RTS was 3 days (95% CI −13.1 to 7.1; p=0.561) between athletes with and without other injury modifiers. The history of other injury modifiers had no meaningful influence on the time to RTS (95% CI −6.0 to 11.0; p=0.579).

Preinjury modifiers of time to return to sport following SRC

SCAT5 symptoms and severity scores

Positive associations were observed between the time to RTS and the number of initial symptoms (r=0.3; p=0.010; 95% CI 0.1 to 0.5) or initial severity score (r=0.3; p=0.008; 95% CI 0.1 to 0.5) from the SCAT5. The associations were not meaningful between the number of specialist consultations and the initial number of symptoms (r=−0.1; p=0.633; 95% CI −0.3 to 0.2) or initial severity score (r=−0.1; p=0.432; 95% CI −0.3 to 0.2). Anecdotally, most reported symptoms following SRC were ‘headache’ (86.2%) and ‘pressure in the head’ (80.0%), followed by ‘fatigue’ (72.3%), ‘neck pain’ (70.8%) and ‘not feeling right’ (67.7%; online supplemental material ).

This study is the first to report descriptive data on athletes with SRC collected across several sports during an Olympic quadrennial, including athletes who received the most recent evidence-based care at the time of data collection. Primarily, results indicate that the time to RTS in athletes engaged in Summer and Winter Olympic sports may require a median (IQR) of 34.0 (21.0–63.0) days. Importantly, findings demonstrated that athletes with earlier (≤7 days) access to multidisciplinary concussion care showed faster RTS compared with those with late access. Time to RTS exhibited large variability where sex had a meaningful influence on the recovery pathway in the late access group. Initial symptoms, but not history of concussion, were correlated with prognosis in this sample. The main reported symptoms were consistent with previous studies. 38 39

Time to RTS in Olympic sports

This study provides descriptive data on the impact of SRC monitoring programmes on recovery in elite athletes engaged in Olympic sports. As hypothesised, the median time to RTS found in this study (eg, 34.0 days) was about three times longer than those found in reports from before 2005, and 2 weeks longer than the typical median values (eg, 19.8 days) recently reported in athletic levels including youth (high heterogeneity, I 2 =99.3%). 19 These durations were also twice as long as the median unrestricted time to RTS observed among American collegiate athletes, which averages around 16 days. 9 20 21 However, they were more closely aligned with findings from collegiate athletes with slow recovery (eg, 34.7 days) and evidence from military cadets with poor access where return to duty duration was 29.4 days. 8 22 Several reasons could explain such extended time to RTS, but the most likely seems to be related to the diversity in access among these sports to multidisciplinary services (eg, 10.0 median days (1–20)), well beyond the delays experienced by collegiate athletes, for example (eg, 0.0 median days (0–2)). 40 In the total sample, the delays to first consult with the multidisciplinary clinic were notably mediated by the group with late access, whose athletes had more SRC during international competition. One of the issues for athletes engaged in Olympic sports is that they travel abroad year-round for competitions, in contrast with collegiate athletes who compete domestically. These circumstances likely make access to quality care very variable and make the follow-up of care less centralised. Also, access to resources among these sports is highly variable (eg, medal-dependant), 14 and at the discretion of the sport’s leadership (eg, sport federation), who may decide to prioritise more or fewer resources to concussion management considering the relatively low incidence of this injury. Another explanation for the longer recovery times in these athletes could be the lack of financial incentives to return to play faster, which are less prevalent among Olympic sports compared with professionals. However, the stakes of performance and return to play are still very high among these athletes.

Additionally, it is plausible that studies vary their outcome with shifting operational definitions such as resolution of symptoms, return to activities, graduated return to play or unrestricted RTS. 19 40 It is understood that resolution of symptoms may occur much earlier than return to preinjury performance levels. Finally, an aspect that has been little studied to date is the influence of the sport’s demands on the RTS. For example, acrobatic sports requiring precision/technical skills such as figure skating, trampoline and diving, which involve high visuospatial and vestibular demands, 41 might require more time to recover or elicit symptoms for longer times. Anecdotally, athletes who experienced a long time to RTS (>100 days) were mostly from precision/skill-dependent sports in this sample. The sports demand should be further considered as an injury modifier. More epidemiological reports that consider the latest guidelines are therefore necessary to gain a better understanding of the true time to RTS and impact following SRC in Olympians.

Supporting early multidisciplinary access to care

In this study, athletes who obtained early access to multidisciplinary care after SRC recovered faster than those with late access to multidisciplinary care. This result aligns with findings showing that delayed access to a healthcare practitioner delays recovery, 19 including previous evidence in a sample of patients from a sports medicine clinic (ages 12–22), indicating that the group with a delayed first clinical visit (eg, 8–20 days) was associated with a 5.8 times increased likelihood of a recovery longer than 30 days. 5 Prompt multidisciplinary approach for patients with SRC is suggested to yield greater effectiveness over usual care, 3 6 17 which is currently evaluated under randomised controlled trial. 42 Notably, early physical exercise and prescribed exercise (eg, 48 hours postinjury) are effective in improving recovery compared with strict rest or stretching. 43 44 In fact, preclinical and clinical studies have shown that exercise has the potential to improve neurotransmission, neuroplasticity and cerebral blood flow which supports that the physically trained brain enhanced recovery. 45 46 Prompt access to specialised healthcare professionals can be challenging in some contexts (eg, during international travel), and the cost of accessing medical care privately may prove further prohibitive. This barrier to recovery should be a priority for stakeholders in Olympic sports and given more consideration by health authorities.

Estimated incidences and implications

The estimated incidences of SRC were in the lower range compared with what is reported in other elite sport populations. 1 2 However, the burden of injury remained high for these sports, and the financial resources as well as expertise required to facilitate athletes’ rehabilitation was considerable (median number of consultations: 9.0). Notably, the current standard of public healthcare in Canada does not subsidise the level of support recommended following SRC as first-line care, and the financial subsidisation of this recommended care within each federation is highly dependent on the available funding, varying significantly between sports. 14 Therefore, the ongoing efforts to improve education, prevention and early recognition, modification of rules to make the environments safer and multidisciplinary care access for athletes remain crucial. 7

Strength and limitations

This unique study provides multisport characteristics following the evolution of concussion guidelines in Summer and Winter Olympic sports in North America. Notably, it features a balance between the number of female and male athletes, allowing the analysis of sex differences. 23 26 In a previous review of 171 studies informing consensus statements, samples were mostly composed of more than 80% of male participants, and more than 40% of these studies did not include female participants at all. 26 This study also included multiple non-traditional sports typically not encompassed in SRC research, feature previously identified as a key requirement of future epidemiological research. 47

However, it must be acknowledged that potential confounding factors could influence the results. For example, the number of SRC detected during the study period does not account for potentially unreported concussions. Nevertheless, this figure should be minimal because these athletes are supervised both in training and in competition by medical staff. Next, the sport types were heterogeneous, with inconsistent risk for head impacts or inconsistent sport demand which might have an influence on recovery. Furthermore, the number of participants or sex in each sport was not evenly distributed, with short-track speed skaters representing a large portion of the overall sample (32.5%), for example. Additionally, the number of participants with specific modifiers was too small in the current sample to conclude whether the presence of precise characteristics (eg, history of concussion) impacted the time to RTS. Also, the group with late access was more likely to consist of athletes who sought specialised care for persistent symptoms. These complex cases are often expected to require additional time to recover. 48 Furthermore, athletes in the late group may have sought support outside of the institute medical clinic, without a coordinated multidisciplinary approach. Therefore, the estimation of clinical consultations was tentative for this group and may represent a potential confounding factor in this study.

This is the first study to provide evidence of the prevalence of athletes with SRC and modifiers of recovery in both female and male elite-level athletes across a variety of Summer and Winter Olympic sports. There was a high variability in access to care in this group, and the median (IQR) time to RTS following SRC was 34.0 (21.0–63.0) days. Athletes with earlier access to multidisciplinary care took nearly half the time to RTS compared with those with late access. Sex had a meaningful influence on the recovery pathway in the late access group. Initial symptom number and severity score but not history of concussion were meaningful modifiers of recovery. Injury surveillance programmes targeting national sport organisations should be prioritised to help evaluate the efficacy of recommended injury monitoring programmes and to help athletes engaged in Olympic sports who travel a lot internationally have better access to care. 35 49

Ethics statements

Patient consent for publication.

Not applicable.

Ethics approval

This study involves human participants and was approved by the ethics board of Université de Montréal (certificate #2023-4052). Participants gave informed consent to participate in the study before taking part.

Acknowledgments

The authors would like to thank the members of the concussion interdisciplinary clinic of the Institut national du sport du Québec for collecting the data and for their unconditional support to the athletes.

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Supplementary materials

Supplementary data.

This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

• Data supplement 1

X @ThomasRomeas

Correction notice This article has been corrected since it published Online First. The ORCID details have been added for Dr Croteau.

Contributors TR, FC and SL were involved in planning, conducting and reporting the work. François Bieuzen and Magdalena Wojtowicz critically reviewed the manuscript. TR is guarantor.

Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

Competing interests None declared.

Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

Provenance and peer review Not commissioned; externally peer reviewed.

Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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• Indian J Crit Care Med
• v.23(Suppl 4); 2019 Dec

Understanding Research Study Designs

Priya ranganathan.

Department of Anesthesiology, Critical Care and Pain, Tata Memorial Hospital, Mumbai, Maharashtra, India

In this article, we will look at the important features of various types of research study designs used commonly in biomedical research.

How to cite this article

Ranganathan P. Understanding Research Study Designs. Indian J Crit Care Med 2019;23(Suppl 4):S305–S307.

We use a variety of research study designs in biomedical research. In this article, the main features of each of these designs are summarized.

TERMS USED IN RESEARCH DESIGNS

Exposure vs outcome.

Exposure refers to any factor that may be associated with the outcome of interest. It is also called the predictor variable or independent variable or risk factor. Outcome refers to the variable that is studied to assess the impact of the exposure on the population. It is also known as the predicted variable or the dependent variable. For example, in a study looking at nerve damage after organophosphate (OPC) poisoning, the exposure would be OPC and the outcome would be nerve damage.

Longitudinal vs Transversal Studies

In longitudinal studies, participants are followed over time to determine the association between exposure and outcome (or outcome and exposure). On the other hand, in transversal studies, observations about exposure and outcome are made at a single point in time.

Forward vs Backward Directed Studies

In forward-directed studies, the direction of enquiry moves from exposure to outcome. In backward-directed studies, the line of enquiry starts with outcome and then determines exposure.

Prospective vs Retrospective Studies

In prospective studies, the outcome has not occurred at the time of initiation of the study. The researcher determines exposure and follows participants into the future to assess outcomes. In retrospective studies, the outcome of interest has already occurred when the study commences.

CLASSIFICATION OF STUDY DESIGNS

Broadly, study designs can be classified as descriptive or analytical (inferential) studies.

Descriptive Studies

Descriptive studies describe the characteristics of interest in the study population (also referred to as sample, to differentiate it from the entire population in the universe). These studies do not have a comparison group. The simplest type of descriptive study is the case report. In a case report, the researcher describes his/her experience with symptoms, signs, diagnosis, or treatment of a patient. Sometimes, a group of patients having a similar experience may be grouped to form a case series.

Case reports and case series form the lowest level of evidence in biomedical research and, as such, are considered hypothesis-generating studies. However, they are easy to write and may be a good starting point for the budding researcher. The recognition of some important associations in the field of medicine—such as that of thalidomide with phocomelia and Kaposi's sarcoma with HIV infection—resulted from case reports and case series. The reader can look up several published case reports and case series related to complications after OPC poisoning. 1 , 2

Analytical (Inferential) Studies

Analytical or inferential studies try to prove a hypothesis and establish an association between an exposure and an outcome. These studies usually have a comparator group. Analytical studies are further classified as observational or interventional studies.

In observational studies, there is no intervention by the researcher. The researcher merely observes outcomes in different groups of participants who, for natural reasons, have or have not been exposed to a particular risk factor. Examples of observational studies include cross-sectional, case–control, and cohort studies.

Cross-sectional Studies

These are transversal studies where data are collected from the study population at a single point in time. Exposure and outcome are determined simultaneously. Cross-sectional studies are easy to conduct, involve no follow-up, and need limited resources. They offer useful information on prevalence of health conditions and possible associations between risk factors and outcomes. However, there are two major limitations of cross-sectional studies. First, it may not be possible to establish a clear cause–benefit relationship. For example, in a study of association between colon cancer and dietary fiber intake, it may be difficult to establish whether the low fiber intake preceded the symptoms of colon cancer or whether the symptoms of colon cancer resulted in a change in dietary fiber intake. Another important limitation of cross-sectional studies is survival bias. For example, in a study looking at alcohol intake vs mortality due to chronic liver disease, among the participants with the highest alcohol intake, several may have died of liver disease; this will not be picked up by the study and will give biased results. An example of a cross-sectional study is a survey on nurses’ knowledge and practices of initial management of acute poisoning. 3

Case–control Studies

Case–control studies are backward-directed studies. Here, the direction of enquiry begins with the outcome and then proceeds to exposure. Case–control studies are always retrospective, i.e., the outcome of interest has occurred when the study begins. The researcher identifies participants who have developed the outcome of interest (cases) and chooses matching participants who do not have the outcome (controls). Matching is done based on factors that are likely to influence the exposure or outcome (e.g., age, gender, socioeconomic status). The researcher then proceeds to determine exposure in cases and controls. If cases have a higher incidence of exposure than controls, it suggests an association between exposure and outcome. Case–control studies are relatively quick to conduct, need limited resources, and are useful when the outcome is rare. They also allow the researcher to study multiple exposures for a particular outcome. However, they have several limitations. First, matching of cases with controls may not be easy since many unknown confounders may affect exposure and outcome. Second, there may be biased in the way the history of exposure is determined in cases vs controls; one way to overcome this is to have a blinded assessor determining the exposure using a standard technique (e.g., a standardized questionnaire). However, despite this, it has been shown that cases are far more likely than controls to recall history of exposure—the “recall bias.” For example, mothers of babies born with congenital anomalies may provide a more detailed history of drugs ingested during their pregnancy than those with normal babies. Also, since case-control studies do not begin with a population at risk, it is not possible to determine the true risk of outcome. Instead, one can only calculate the odds of association between exposure and outcome.

Kendrick and colleagues designed a case–control study to look at the association between domestic poison prevention practices and medically attended poisoning in children. They identified children presenting with unintentional poisoning at home (cases with the outcome), matched them with community participants (controls without the outcome), and then elicited data from parents and caregivers on home safety practices (exposure). 4

Cohort Studies

Cohort studies resemble clinical trials except that the exposure is naturally determined instead of being decided by the investigator. Here, the direction of enquiry begins with the exposure and then proceeds to outcome. The researcher begins with a group of individuals who are free of outcome at baseline; of these, some have the exposure (study cohort) while others do not (control group). The groups are followed up over a period of time to determine occurrence of outcome. Cohort studies may be prospective (involving a period of follow-up after the start of the study) or retrospective (e.g., using medical records or registry data). Cohort studies are considered the strongest among the observational study designs. They provide proof of temporal relationship (exposure occurred before outcome), allow determination of risk, and permit multiple outcomes to be studied for a single exposure. However, they are expensive to conduct and time-consuming, there may be several losses to follow-up, and they are not suitable for studying rare outcomes. Also, there may be unknown confounders other than the exposure affecting the occurrence of the outcome.

Jayasinghe conducted a cohort study to look at the effect of acute organophosphorus poisoning on nerve function. They recruited 70 patients with OPC poisoning (exposed group) and 70 matched controls without history of pesticide exposure (unexposed controls). Participants were followed up or 6 weeks for neurophysiological assessments to determine nerve damage (outcome). Hung carried out a retrospective cohort study using a nationwide research database to look at the long-term effects of OPC poisoning on cardiovascular disease. From the database, he identified an OPC-exposed cohort and an unexposed control cohort (matched for gender and age) from several years back and then examined later records to look at the development of cardiovascular diseases in both groups. 5

Interventional Studies

In interventional studies (also known as experimental studies or clinical trials), the researcher deliberately allots participants to receive one of several interventions; of these, some may be experimental while others may be controls (either standard of care or placebo). Allotment of participants to a particular treatment arm is carried out through the process of randomization, which ensures that every participant has a similar chance of being in any of the arms, eliminating bias in selection. There are several other aspects crucial to the validity of the results of a clinical trial such as allocation concealment, blinding, choice of control, and statistical analysis plan. These will be discussed in a separate article.

The randomized controlled clinical trial is considered the gold standard for evaluating the efficacy of a treatment. Randomization leads to equal distribution of known and unknown confounders between treatment arms; therefore, we can be reasonably certain that any difference in outcome is a treatment effect and not due to other factors. The temporal sequence of cause and effect is established. It is possible to determine risk of the outcome in each treatment arm accurately. However, randomized controlled trials have their limitations and may not be possible in every situation. For example, it is unethical to randomize participants to an intervention that is likely to cause harm—e.g., smoking. In such cases, well-designed observational studies are the only option. Also, these trials are expensive to conduct and resource-intensive.

In a randomized controlled trial, Li et al. randomly allocated patients of paraquat poisoning to receive either conventional therapy (control group) or continuous veno-venous hemofiltration (intervention). Patients were followed up to look for mortality or other adverse events (outcome). 6

Researchers need to understand the features of different study designs, with their advantages and limitations so that the most appropriate design can be chosen for a particular research question. The Centre for Evidence Based Medicine offers an useful tool to determine the type of research design used in a particular study. 7

Source of support: Nil

Conflict of interest: None

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• Published: 09 September 2024

Trends of Toxoplasma gondii and common transfusable venereal infections among blood donors in Menoufia Province, Egypt

• Marwa A. Gouda   ORCID: orcid.org/0000-0003-1723-6792 1 ,
• Sara A. Saied 2 ,
• Walaa Mohamed Omar Ashry 3 ,
• Raafat Abd-Rabow Abd-Eltwab 4 ,
• Mohamed Morshdy Aldesoky 4 ,
• Omnia Ahmed El-dydamoni 5 ,
• Marwa Yousef 6 &
• Mona M. El-Derbawy 7  

Scientific Reports volume  14 , Article number:  20920 ( 2024 ) Cite this article

Metrics details

• Epidemiology
• Microbiology

Blood transfusion has a hazard of transmission of many pathogens, including Toxoplasma gondii ( T. gondii ) and other venereal infections. It is crucial to conduct epidemiological surveillance to detect the prevalence of these pathogens. The study aimed to assess the seroprevalence of T. gondii and common transfusable venereal infections among healthy blood donors in Menoufia Province, Egypt, and identify associated risk factors. Four hundred twenty individuals were recruited between January and April 2023 for cross-sectional descriptive research from the blood banks of Menoufia University medical hospitals. Collected blood samples were screened for anti- T. gondii IgM and IgG, HBsAg, anti-HCV antibodies, HIV p24 antigen and anti-HIV antibodies, and anti- Treponema pallidum antibodies. 46 (11.0%) and 22 donors (5.2%) individuals tested positive for anti- T. gondii IgG with a 95% CI (8.3–14.6) and IgM with a 95% CI (3.5–8.1), respectively, while one patient (0.2%) was positive for both antibodies. Regarding venereal infections, 12 (2.9%) were positive for HBV, 6 (1.4%) were positive for HCV, 7 (1.7%) were positive for HIV, and none of the tested population showed positivity for syphilis. Female gender, consumption of raw meat, agricultural environment, poor awareness about T. gondii , and blood group type (especially AB and O groups) were identified as independent risk factors for T. gondii infection. The study highlights the importance of testing blood donors for T. gondii and common transfusable venereal illnesses. Starting health education programs and preventative measures, such as suitable meat handling and cleanliness practices, is critical for minimizing the occurrence of these illnesses. Larger-scale additional study is advised to confirm these results and provide guidance for public health initiatives.

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Introduction.

Blood transfusion is a critical medical procedure vital for patients’ treatment. Every year, millions of people are exposed to avoidable life-threatening risks as a result of hazardous blood transfusions. The major transfusion-transmitted infections are Hepatitis B virus (HBV), Hepatitis C virus (HCV), human immunodeficiency virus (HIV), and syphilis, which pose significant threats to recipient safety 1 .

Toxoplasma gondii is a food-borne zoonotic protozoan parasite capable of infecting all homoeothermic vertebrates; however, felids, which are members of the Felidae family, serve as the definitive hosts for ( T. gondii ) infection, as both the sexual (intestinal) and asexual (tissue) cycles occur simultaneously in these animals (cats), resulting in un-sporulated non-infectious oocyst elimination and excretion 2 .

Oocysts may shed in vast numbers, even though they typically shed within 1–3 weeks. Oocysts sporulate in the environment in one to five days and spread infection. Warmer settings can facilitate sporulation more quickly, which increases the rate at which oocysts are found in the environment 3 . Temperature, humidity, and precipitation patterns all influence the survival and dissemination of T. gondii oocysts in the environment 4 . Warmer temperatures and greater rainfall can help oocysts survive and spread, potentially boosting infection rates in both animal and human populations 5 .

The infection with T. gondii usually appears as mild manifestations observed on exposure in immunocompetent people, such as warmth, tiredness, and cervical lymphadenopathy, which are self-limited; however, pneumonitis and encephalitis are complications of the infection, which is severe in immunocompromised people (such as AIDS patients) and blood recipients (such as those with thalassemia, haemophilia, dialysis patients, organ transplant recipients, and neonatal jaundice) 6 , 7 .

Co-infections can increase the severity of some infectious disorders. It has the potential to affect immune responses, and disease severity, and increase inflammatory cytokines 8 . Since T. gondii is considered one of the most successful parasites on the planet, the T. gondii disease burden has been classified as one of the most significant parasitic disorders. In order to reduce the occurrence of T. gondii infection among humans, it is urgent to understand the current status of this pathogen. Our study aimed to estimate the current situation of T. gondii and other transfusable venereal infections among blood donors in Menoufia Province, reflecting previously unknown regional outlines. Also, the study evaluated possible risk factors linked to T. gondii exposure in the population. Finally, the study intended to propose community-wide methods to raise awareness and prevent T. gondii infection.

Subjects and methods

Ethical approval and consent to participate.

This study was conducted in accordance with the ethical principles outlined in the Declaration of Helsinki and was approved by the National Liver Disease Institute’s research ethics committee (NLI IRB procedure N. 00,422/2022). All subjects have given informed consent after being informed about the study’s objectives, the importance of participation as part of the community, and any potential adverse side effects of puncture. All subjects gave informed consent after being informed about the study’s objectives, the importance of participation as part of the community, and any potential negative side effects of puncture.

Study design

This cross-sectional descriptive study involved 420 blood donors’ serum samples. Samples were gathered randomly from blood donor volunteers in Menoufia University hospitals’ blood banks between January and April 2023. The inclusion criteria included individuals aged 18 and above who volunteered to participate by giving blood and providing informed permission. Individuals with a history of chronic diseases, recent infections, or who refused to participate were excluded from the study. Menoufia Province is a governorate in northern Egypt near the Nile Delta. Its surface area is about 2,543.03 km 2 , with 4,366,000 people in total, as reported in 2018, and its longitude and latitude are 30.52° N and 30.99° E. The governorate is considered one of Egypt’s regions with the highest population densities and is an important center for liver transplantation at the National Liver Institute.

Sample size estimation

The present sample size was calculated according to Yılmaz et al. (2021) 9 , who revealed 2.3% T. gondii IgM seropositivity at alpha error 0.05 and the power of the study 90%; the estimated sample size was 396 participants. Under the following formula,

e2,where n = sample size, z = standard error with the chosen level of confidence (1.96), p  = proportion detected in the reference study, q = 1 −  p , and e = acceptable sample error (0.05).

Questionnaire

A predesigned questionnaire was taken from each participant. It included:

Socio-demographic data.

Awareness about T. gondii infection: was assessed through a series of questions assessing the fundamental understanding of the disease, the transmission routes, hosts, the role of raw meat consumption in transmission, agricultural-related activities and other suggested risk factors, and possible complications of T. gondii infection, particularly for pregnant women and persons with weakened immune systems. Through 15 questions that were scored as (2, for correct answer; 1, for incomplete answer; and 0, for wrong answer, with a total score of 30; the good awareness level was at a score of 15 or above while the score less than 15 was considered as poor awareness.

Risk factors associated with T. gondii infection: including dealing with cats, agricultural environment-related activity, eating or dealing with raw meat as well as hand washing before eating, it also included other data, including blood group type, and previous blood transfusion.

Blood Sampling

Each person donated three mL of venous blood, centrifuged for five minutes at 3000 rpm to extract the serum and kept at − 20 °C for further laboratory analysis.

Enzyme-linked immunosorbent assay (ELISA)

Serum samples were transferred to the Parasitology Laboratory, Department of Clinical and Molecular Parasitology, National Liver Institute, Menoufia University, Egypt, to detect T. gondii -specific IgM and IgG antibodies. All were analyzed using an ELISA kit that is available commercially (Cat No. SL2055Hu_1 and SL2054Hu-1, SunLong Biotec). The manufacturer’s guidelines were fulfilled for running the analysis. Based on ELISA kits, positive samples were considered at titers above 1 and 3 IU for IgM and IgG, respectively. Negative samples were defined at values below 0.8 and 1 IU for IgM and IgG, respectively. Between the two ranges, a grey zone is reported. The optical density (OD) was measured under a 450 nm wave.

Venereal infection screening

All samples were tested for HBV surface antigen (HBsAg), anti-HCV antibodies, HIV p24 antigen, anti-HIV antibodies, and anti- T. pallidum antibodies. The venereal infection screening was conducted using an immunoassay Cobas e 601 immunoassay analyzer (Roche Diagnostics, Germany), which employs electrochemiluminescence (ELC) technology. The tests used were Elecsys HBSAGII (Cat No. 07251076190), Elecsys AHCVII (Cat No. 06427405190), Elecsys HIV Duo test (Cat No. 07229542190), and Elecsys Syphilis (Cat No. 07251378190), all provided by COBAS (Roche Diagnostics) and performed according to the manufacturer’s instructions.

Statistical analysis

Categorical and quantitative data were analyzed using SPSS (Statistical Package Software for Social Science) version 20.0 (SPSS Inc., Chicago, IL, USA). The prevalence of T. gondii antibodies and positivity to other transfusable venereal infections were assessed through frequency, percentage, and a 95% confidence interval (CI). Comparing positive and negative T. gondii antibody groups regarding qualitative variables by chi-squared test and quantitative normally distributed data was tested by student’s t-test. The study employed multivariate binary logistic regression analysis to calculate adjusted odds ratios (ORs) and 95% confidence intervals (CIs) to determine independent risk factors for T. gondii infection. A p-value of less than 0.05 determined a statistically significant result.

Prevalence of transfusable venereal infections

Regarding the prevalence of transfusable venereal infections, initial screenings (for HBV, HCV, HIV, and syphilis) detected 12 cases (2.9%) positive for HBsAg, six positive cases for anti-HCV antibodies (1.4%), seven cases positive for HIV p24 antigen and anti-HIV antibodies (1.7%), and nonpositive for syphilis (Fig.  1 ,B).

( A ): Prevalence of T. gondii among blood donors ( B ): Prevalence of transfusable venereal diseases.

Seropositivity of T. gondii infection

The ELISA test screened 420 blood samples for T. gondii- specific IgG and IgM antibodies. Out of them, 69 (16.4%) blood donors had anti- T. gondii antibodies in their sera (IgG, IgM, or both) (Fig.  1 , A). Forty-six cases (11%) were IgG-only seropositive, 22 cases (5.2%) were IgM-positive, and one case was positive for both IgG and IgM (0.2%) (Table 1 ).

Demographic characteristics of the studied population

Among the healthy blood donors enlisted in this research, the respondents’ average age was 32.39 ± 10.51 years (with a range of 17–66 years). Ages 21–40 comprised the largest age cohort of blood donors (68.1%). The vast bulk of the subjects (97.1%) were men. Sixty-six-point two percent (66.2%) of the volunteers were highly educated (Table 2 ).

Significant risk factors

Sixty-three (15.4%) of male-positive cases and six (50%) of female-positive cases indicated that the female sex was a major risk factor. Also, dealing with cats, eating rand, dealing with row meat, the agricultural environment, poor awareness about T. gondii infection, and blood groups were significant risk factors for T. gondii infection. Age, residence, educational level, and the presence of other transfusable venereal infections weren’t associated with the T. gondii infection (Table 3 ). There was no significant association between seropositivity for T. gondii and venereal infections (Table 4 ).

Multivariate analysis of independent risk factors associated with T. gondii infection

Multivariate regression analysis revealed that female gender, consumption of raw meat, agriculture environment and poor T. gondii infection awareness were independent risk factors for T. gondii infection with an odds ratio (95% CI): 3.1 (1.81–9.45), 32.62 (13.14–81.0), 4.57 (2.01–10.41), 12.66 (4.53–35.42) for the female gender, consumption of raw meat, agriculture environment, lack of T. gondii infection awareness respectively while for ABO grouping with taking B group as a reference, AB and O groups were independent risk groups with odds ratio (95% CI): 3.26 (1.92–7.84) & 4.58 (2.11–11.47) respectively (Table 5 ).

Understanding the prevalence of T. gondii and venereal infectious pathogens and risk factors among blood donors in Menoufia Province is crucial for public health strategies. This research is an epidemiologic report on seropositivity to T. gondii infection among healthy blood donors in Menoufia blood banks, Egypt. Menoufia Governorate had a low prevalence compared to most worldwide studies. In this research, the authors reported a total seroprevalence of 16.4% (95% CI 13–20.3); IgM-positive cases represented 5.5%, posing a risk of transmitting the infection to blood recipients. By integrating molecular approaches, supplementary serological markers, and direct proof of parasitemia, the hypothesis can be substantially reinforced, leading to a more thorough evaluation of the risk of T. gondii infection by blood transfusion, which is undertaken currently in epidemiological national research funded by STDF aiming to complete the current research.

Globally, according to estimates by Foroutan-Rad et al. 10 , T. gondii infection affects 33% of blood donors worldwide, with rates highest in Africa (46%) and lowest in Asia (29%) 10 . The prevalence rate varies by nation: 6.26% in China 11 , 9.3% in Taiwan 12 , 19.66% in India 13 , 20.5% in Serbia 14 , 25.6% in Turkey 9 , 36% in Portugal 15 , 48.1% in Brazil 16 , and 67.92% in Côte d’Ivoire 17 .

In other African countries, the seroprevalence among tested blood donors was 44.4% in South-West and Central-East Tunisia 18 and 47.7% in Sidi Bel Abbès, West Algeria 19 . The difference in serological methods used across studies is probably the main factor in the difference in reported prevalence of T. gondii infection among different nations.

Compared with previous findings from other Egyptian governorates, the current seroprevalence rates are consistent with those from El-Wadi El Gadded, which had the lowest incidence between 1 and 25% 20 . Earlier studies reported a prevalence between 33.7 and 67.4% of healthy Egyptian blood donors had antibodies to T. gondii infection, comparable to a range of 3–42.5% in the general Egyptian population. Increased seropositivity was seen. in the Lower Egypt bordering governorates of Sharqia and Qalyoubia (38.8% and 27.5% respectively), as well as in the rural Upper Egypt governorate of Beni-Suef (35.2%) 21 . Cairo also had high infection rates (between 30 and 42.5%) 21 . The studied group’s higher level of illness knowledge is probably the reason for the reduced infection prevalence when compared to estimates from throughout the world. These differences point to possible socioeconomic and geographic variables affecting T. gondii exposure in Egypt.

Multivariate regression analysis displayed that contact with cats, consuming raw or undercooked meat, and having agricultural pursuits are significant risk factors for T. gondii seropositivity, demonstrating that both infection routes—ingesting oocysts (soil contamination, contaminated water, and contaminated raw food e.g. salads, vegetables) and tissue cysts found in undercooked meat (a foodborne transmission)—showed up among the blood donors with different educational levels. These findings are supported by earlier studies 9 , 22 . From their results, domestic cats may be related to the exposure of the individuals included in the study to T. gondii . However, it is worth noting that direct contact with cats does not guarantee transmission of the parasite since T. gondii oocysts are eliminated as non-infective. In contrast to the present findings, El-Deeb and their alleles 23 found no statistically significant association between seropositivity concerning contact with domestic cats and meat consumption in Menoufia, Egypt. However, contact with soil was a considerable risk factor, which could be explained by the prevalence of domestic and stray cats, both more susceptible to parasites 23 .

Likewise, in the research done by Mahmoudvand et al. 22 , the prevalence of T. gondii infection in the current study was significantly higher in female donors (95%CI 1.71–17.52) despite the limited number of female participants in our study compared to male donors. Mahmoudvand et al. 22 , attributed this disparity to the female daily exposure to more tissue cysts and oocysts. Handling raw meat and gardening are cultural practices and household activities that may expose women to greater levels of T. gondii . Therefore, validating these findings using a more extensive sample size is necessary. These results were not supported by Hosseini and his/ her colleagues 24 , who did not find gender a significant risk factor.

Seropositivity in this research was higher in rural areas (53.6%) than in urban areas (46.4%); however, the difference was insignificant. This finding contrasts with those reported by some authors 22 , 24 . They hypothesized in their research that the overabundance of cats, inadequate sanitation of the environment, and lax hygiene standards might cause this difference.

The ABO phenotype and RhD antigen were previously associated with pathogenic protozoa of the phylum Apicomplexa. The protective effect of type O blood against severe malaria has been observed, possibly explaining the high prevalence of type O in regions where Plasmodium falciparum is endemic 25 .

Our current research discovered that blood donors carrying the type O blood group had the highest incidence of T. gondii infection and were riskier, with a significant difference between T. gondii and ( P  < 0.001), which is equivalent to the findings reported previously in northern Egypt 26 but different from those reported in Iran, where they found blood group B carriers more susceptible to infection with T. gondii infection 24 . Following the findings of Hosseini et al. research, the level of disease between Rh-positive and negative samples was not different 24 . Despite the association our study found between the blood group and seropositivity, this does not prove that the two are causally related to the onset of illness. Our study’s findings should be seen as preliminary and need more investigation in follow-up studies.

Most positive cases ranged from 21 to 40 years; however, age was not a significant risk factor in our univariate analysis. In the same vein, research done in Ardabil Province, northwestern Iran, demonstrated that most positive cases were aged 31–40 with no significant difference 27 . Unlike the current finding, other authors found that age substantially contributes to infection. Their conclusion was attributed to the cumulative effect of being exposed to the parasite over time 14 .

This research showed a higher prevalence of HBsAg (2.9%), followed by HIV and HCV (1.7% and 1.4%, respectively). Syphilis cases were absent among the studied population. The higher percent of HBsAg compared to other screened transfusion-transmissible infections was consistent with similar reports from a study among blood donors in Bahir Dar, North West, Ethiopia, where HBV was prevalent in 2.8% of cases, followed by HIV and HCV 28 .

Co-infections can worsen the symptoms of some infectious disorders. It can modulate immune responses, exacerbate disease severity, and increase inflammatory cytokines. While this study did not find a substantial prevalence of co-infection between T. gondii and the viral agents tested (HBV, HIV, and HCV), other research suggests that these pathogens may interact. In Egypt, for example, T. gondii co-infection with HBV and HCV was reported 29 . Furthermore, HIV infection may impair the immune system, increasing the risk of reactivating latent T. gondii infection 8 , 11 . T. gondii co-infection with certain viruses must be addressed to prevent, detect, and cure infections. It needs further examination and research.

Conclusion and recommendations

This cross-sectional research investigated the seroprevalence of T. gondii and common transfusable venereal infections across healthy blood donors in Egypt’s central Menoufia blood banks. According to this study, the governorate of Menoufia had a low incidence of T. gondii infection among blood donors.

Therefore, testing for T. gondii infection is required in blood donors to prevent potentially fatal outcomes for blood receivers. Building programs for health education are also required as a suitable strategy for preventing diseases.

Value-added of this research

We addressed the seroprevalence of T. gondii in the studied population, which provides a step for further studies and implementation research on a larger scale to test preventive strategies in the future.

Data availability

This article encompasses all data that was generated or evaluated.The corresponding author will provide any additional inquiries.

Abbreviations

Complete blood picture

Hepatitis B virus

Treponema pallidum

Hepatitis C virus

Human immunodeficiency virus

Enzyme-linked immunosorbent assay

Immunoglobulin G

Immunoglobulin M

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Acknowledgements

This work was created at the National Liver Institute and Faculty of Medicine at Menoufia University in Shebin El Kom City, Egypt. We appreciate the blood donors who took part in our research.

Open access funding provided by The Science, Technology & Innovation Funding Authority (STDF) in cooperation with The Egyptian Knowledge Bank (EKB). The research paper, writing, and publication were done without receiving any financial assistance.

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Marwa A. Gouda

Department of Clinical Pathology, National Liver Institute, Menoufia University, Menoufia, Egypt

Sara A. Saied

Department of Medical Microbiology and Immunology, Damietta Faculty of Medicine (Girls), Al-Azhar University, Damietta, Egypt

Walaa Mohamed Omar Ashry

Department of Medical Microbiology and Immunology, Damietta Faculty of Medicine, Al-Azhar University, Damietta, Egypt

Raafat Abd-Rabow Abd-Eltwab & Mohamed Morshdy Aldesoky

Department of Medical Microbiology and Immunology, Faculty of Medicine for Girls (Cairo), Al-Azhar University, Cairo, Egypt

Omnia Ahmed El-dydamoni

Department of Epidemiology and Preventive Medicine, High Institute of Public Health, Alexandria University, Alexandria, Egypt

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Barriers of access to primary healthcare services by National Health Insurance Fund capitated members in Uasin Gishu county, Kenya

• Barbara Nawire Were 1 ,
• Eunice Muthoni Mwangi 2 &
• Lillian Wambui Muiruri 1  

BMC Health Services Research volume  24 , Article number:  1025 ( 2024 ) Cite this article

Metrics details

The study identifies provision of primary healthcare services using the capitated health model as a prerequisite for promoting positive healthcare outcomes for a country’s population. However, capitated members have continued to face challenges in accessing primary healthcare services despite enrolment in the National Health Insurance Fund (NHIF). This study sought to determine if variables such as patient knowledge of the NHIF benefit package, NHIF Premium Payment processes, selecting NHIF capitated health facilities, and NHIF Communication to citizens’ influences access to primary healthcare services.

A cross-sectional analytical research design was adopted. Data was collected from patients who were using NHIF cards, who were drawn from health facilities. Data was collected using a structured questionnaire where some of the questions were rated using the Likert scale to enable the generation of descriptive statistics. Data was analysed using descriptive and inferential statistics. Logistic regression was conducted to determine the relationship between the independent and the dependent variables.

The study found that four independent variables (Patient knowledge of NHIF Benefit Package, NHIF Premium Payment processes, Selecting NHIF capitated Health Facility, and NHIF Communication to citizens) were significant predictors of access to capitated healthcare services with significance values of .001, .001, .001 and .001 respectively at 95% significance level.

Conclusions

The study found that familiarity with the NHIF benefit package significantly influenced NHIF capitated members' access to primary healthcare services in Uasin Gishu County. While most members were aware of their healthcare entitlements, there's a need for increased awareness regarding access to surgical services and dependents' inclusion. Facility selection also played a crucial role, influenced by factors like freedom of choice, NHIF facility selection rules, facility appearance, and proximity to members' homes. NHIF communication positively impacted access, with effective communication channels aiding service accessibility. Premium payment processes also significantly linked with service access, influenced by factors such as payment procedures, premium awareness, payment schedules, registration waiting periods, and penalties for defaults. Overall, patient knowledge, NHIF communication, premium payment processes, and facility selection all contributed positively to NHIF capitated members' access to primary healthcare services in Uasin Gishu County.

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Introduction

Health financing plays a critical role in the functioning of healthcare systems, encompassing the acquisition, pooling, and allocation of funds to address people’s healthcare needs [ 1 ]. An effective health financing system should be capable of consistently generating sufficient funds to facilitate access to high-quality health services without imposing financial burdens [ 2 , 3 ]. The core functions of health financing comprise revenue collection, risk pooling, and the purchasing of health services [ 4 , 5 ]. Purchasing can take either a passive or strategic approach. Strategic purchasing aims to optimize health system performance, while passive purchasing operates within predetermined budgetary constraints. Strategic purchasing, integral to achieving Universal Health Coverage (UHC), prioritizes both adequate resource mobilization and efficient resource utilization [ 6 , 7 , 8 ]. Provider payment mechanisms within healthcare systems primarily include fee-for-service, salary, and capitation. Strategic employment of capitation holds promise for advancing UHC objectives. Capitation involves providers receiving fixed payments per enrolled individual over a defined period, fostering a shift towards preventive care [ 9 ]. Simplified billing procedures under capitation streamline administrative processes and incentivize preventive healthcare, thus reducing reliance on costly interventions [ 10 , 11 , 12 ].

Globally, the capitation model predominates in tax-funded health systems like those of Italy and the UK, where general practitioners deliver primary care [ 13 , 14 ]. As countries commit to UHC, many are considering integrating capitation with other payment models to enhance healthcare efficiency and performance [ 13 , 15 ]. However, challenges such as inadequate incentive structures and concerns about limiting consumer choice hinder widespread adoption [ 16 , 17 ].

Kenya's National Hospital Insurance Fund (NHIF) predominantly employs capitation to finance primary healthcare services, contracting various organizations to provide outpatient care. Despite the theoretical benefits of capitation in promoting preventive care and reducing hospitalization rates, challenges persist, including inadequate funding and delays in payment [ 18 , 19 , 20 ]. Kenya's efforts to achieve UHC through NHIF expansion face obstacles such as reliance on out-of-pocket payments and inconsistencies in service provision [ 21 , 22 , 23 ].

To address these challenges, this study was conducted in Uasin Gishu County, Kenya, to explore the barriers of access to primary healthcare services by national health insurance fund capitated members in Uasin Gishu county, Kenya. The findings aim to inform decision-makers and stakeholders on measures to enhance access to primary healthcare services within the national scheme.

This cross-sectional analytical research was conducted in Uasin Gishu County, Kenya, chosen due to its large population exceeding 1.3 million in 2019 and a notable inter-censual growth rate of 3.6%, surpassing the national rate of 2.9% [ 24 ]. The county's poverty rate, at 44.6% as of 2006, highlights socio-economic disparities affecting the purchasing power of primary healthcare services. Among its 125 public health facilities, there's one national referral hospital, two district hospitals, 11 sub-district hospitals, 88 dispensaries, and 23 health centres. Utilizing a multistage sampling technique, 90 facilities were selected, targeting over 10,000 capitated members [ 25 ]. Based on Krejcie and Morgan's formula [ 14 ], a sample of 384 respondents was determined, proportionately allocated to the facilities according to NHIF registration. Within each facility, simple random sampling was employed.

Data collection utilized a structured questionnaire, employing a three-point Likert scale, administered in English, covering socio-demographic characteristics, independent variables (NHIF benefit package, premium payment processes, communication to citizens, and healthcare provider selection), and the dependent variable (access to NHIF primary healthcare services) [ 26 ]. Logistic regression analysed the relationship between independent and dependent variables, with Likert scale responses converted into binary variables, where agreement was coded as 1 and disagreement or not sure as 0. This binary coding facilitated the analysis, reflecting patients' access or lack thereof to primary healthcare services.

Two hundred eighty-two out of 384 participants responded, contributing to a 73% response rate, ideal for analysing socio-demographic characteristics such as gender, age, number of children, marital status, education, employment, household income, and NHIF contributions as presented in Table  1 .

The primary age group of respondents was 25 to 34 years, typically productive and focused on personal and organizational growth. They exhibited a high likelihood of seeking healthcare services, with many having young families, leading to increased capitation subscription, contribution, and utilization rates. The majority had partners, had 1–2 children, had acquired tertiary education, had employment, and had a household income adequate for NHIF premiums.

Access to NHIF primary care health services

The study dependent variable was patient’s access to NHIF Primary Care Health Services. Descriptive results are presented in Table  2  [ 27 ]. 

Over 70% agreement was observed regarding positive staff attitude, feeling safe while with staffs, staff competence and willingness to assist patients, NHIF service availability, and manageable waiting times. However, 226(80%) agreed to paying out-of-pocket for registration, consultation, medications, or laboratory services despite having prepaid for the services.

Logistic regression

The independent variable in this study were (NHIF Benefit Package, premium payment processes, communication to citizens, and healthcare provider selection) and the dependent variable was access to NHIF primary healthcare services. Logistic regression was undertaken of the variables to determine the barriers of access to primary healthcare services by national health insurance fund capitated members in Uasin Gishu county, Kenya.

The model used in this study was as follows:

where Z is a linear combination of the covariates expressed as:

The model employed in this study was formulated as follows:

where Z represents a linear combination of the covariates, with X1, X2, X3, and X4, being the independent variables (NHIF Benefit Package, premium payment processes, communication to citizens, and healthcare provider selection). The intercept is represented by β0, whereas β1, β2, β3 and β4 denote the estimates of the increase in log odds of the dependent variable (access to NHIF primary care health services) for each unit increase in the respective independent variables. An odds ratio of 1 indicates that the independent variable has no effect on the dependent variable. An odds ratio greater than one suggests a greater risk association, while ratio less than one indicates a reduced risk or the ability of the independent variable to mitigate the risk of access to NHIF primary care health services [ 28 ].

A logistic regression analysis was conducted to examine the impact of patients’ knowledge of the NHIF benefit package, premium payment process, facility selection, and communication from NHIF on their access to services. The results are presented in Table  3  [ 29 ]

The results reveal that patients who knew the NHIF benefit package were 9.274 times more likely to receive the healthcare services compared to those unaware of the benefit package. In addition, patients who knew about the NHIF premium payment process were 5.339 times more likely to visit the NHIF recommended health facilities compared to those unaware of the process. The NHIF members who knew how to select a health facility were 6.101 times willing to access NHIF services compared to their counterparts who had no knowledge of health care facility selection. Members who receive communication were also more likely to access primary healthcare services.

The predominant age group among respondents was between 25 and 34 years, representing individuals at their peak productivity and deeply invested in personal and professional growth. This cohort exhibited the highest likelihood of seeking healthcare services, leading to increased rates of capitation subscription, contribution, and utilization [ 30 ]. Married couples showed a higher rate of insurance coverage, attributed to their responsibilities towards dependents and a comparatively higher household income, facilitating premium payments [ 31 ]. Moreover, a majority of respondents had attained at least minimum academic and professional qualifications, enhancing their understanding of NHIF procedures and terms. They also boasted household incomes adequate for monthly NHIF contributions [ 32 ].

However, patient awareness of NHIF primary health service benefits remained limited, with approximately 25% expressing disagreement or uncertainty regarding their entitlements [ 23 , 33 ]. Understanding of NHIF benefits significantly influenced access to capitated health services positively [ 34 ]. While NHIF continuously reviews its benefit package, many members only become aware of the outpatient services when they necessitate them, possibly due to the on-demand nature of outpatient care utilization [ 35 , 36 ].

Effective communication from NHIF positively impacted access to primary care health services under capitation. Despite positive feedback regarding NHIF's provision of necessary information, a significant portion of respondents expressed dissatisfaction with NHIF's responsiveness to public complaints and its clarity regarding service packages. NHIF primarily communicates through its website and media advertisements, but the limited reach of these channels potentially hinders members' awareness of their entitlements, affecting healthcare access and potentially leading to under or over-provision of services [ 18 , 23 , 37 , 38 , 39 ]. Equity and efficiency in healthcare provision can be achieved by empowering the service providers and the members with the information by adopting effective communication channels [ 40 , 41 ]. The findings agree with other studies which show that some of the communication media used by the NHIF included television, radio, newspaper, social media, mobile phones, billboards, and sensitization campaigns [ 33 ,  42 ]. They agree with the findings of another study where reportedly 57% of the respondents are provided information by NHIF while 43% are not receiving any communication from NHIF regarding the health services covered [ 23 , 33 , 43 ]. In addition, the results also highlight that no legislation provides for feedback or complaints mechanism from members or beneficiaries [ 18 , 23 , 44 ].

Approximately 20% of respondents were unaware of the premium payment process, indicating a lack of clarity regarding NHIF contributions [ 45 , 46 , 47 , 48 ]. The perception of NHIF-accredited health facilities significantly influenced service utilization, with patients associating the facilities' image with service quality [ 35 , 36 , 49 ]. However, the accreditation status varied among clinics and higher-level facilities, potentially impacting service uptake [ 50 , 51 ]. Additionally, individuals diagnosed with chronic illnesses exhibited a higher likelihood of selecting healthcare providers and utilizing services, with private providers restricted to specific service categories compared to government hospitals [ 52 , 53 ].

Limitations

Using structured questions to collect self-reported data. Participants may provide inaccurate or biased responses due to social desirability bias or recall bias. Additionally, respondents' comprehension of the questions or their willingness to disclose certain information could vary, leading to inconsistencies in the data collected. This could affect the validity and reliability of the study's findings.

The findings of the research may have limited generalizability beyond the specific context of Uasin Gishu County. Factors influencing access to primary healthcare services can vary significantly depending on geographical location, cultural norms, healthcare infrastructure, and other contextual factors. Therefore, the determinants identified in this study may not be applicable to capitated members in other regions of Kenya or in different counties; limiting the broader applicability of the research findings and the study also targeted NHIF accredited public health facilities in Uasin Gishu County, Kenya. Privately owned hospitals were excluded. Hence the study findings can be generalized to public facilities.

Out of pocket payment despite prepayment remains a key barrier of access to primary healthcare services. NHIF capitated members are generally aware of their healthcare entitlement. However, efforts are needed to enhance more awareness regarding entitlement to surgical services, inclusion of dependents, access to information about the benefit package, feedback and complaint mechanisms, premium payment process, awareness of the premium to be paid, payment schedule, the waiting period before registration and accessing services, and penalties in the event of default. This information could be used to advocate for the implementation of effective communication systems that allow for real-time dissemination of information and feedback, as well as to conduct regular in-service training and recruiting a well-educated workforce that is familiar with NHIF procedures and terms in order to promote the NHIF in the face of capitated members' social-demographic profiles, and to increase knowledge of the health coverage plan for the informal sector and flexible payment platforms. Utilizing vernacular to reach more communities, particularly in rural areas could broaden outreach.

Availability of data and materials

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

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Acknowledgements

I thank the county government of Uasin Gishu-county directors, the healthcare facility managers, service providers and their clients for their support in the study. I am also gratefully to my supervisors Dr. Eunice Muthoni Mwangi and Ms. Lillian Wambui Muiruri for their guidance through the process from inception to ensuring the objective of this study is achieved.

The author received no financial support for the research, authorship and /or publication of this manuscript.

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Department of Health Systems Management, Kenya Methodist University-Nairobi, Nairobi, Kenya

Barbara Nawire Were & Lillian Wambui Muiruri

Department of Population Health - Medical College, Aga Khan University-Nairobi, Nairobi, Kenya

Eunice Muthoni Mwangi

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Correspondence to Barbara Nawire Were .

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Ethical clearance was obtained from Kenya Methodist University Scientific and Ethics Review Committee (KeMU/SERC/HSM/22/2022), the National Commission of Science and Technology and Innovation (NACOSTI/P/22/19153), and the County Director of Health. Participants provided informed consent, assured of confidentiality and anonymity. They were informed of the voluntary nature of participation and their right to withdraw at any time.

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Were, B.N., Mwangi, E.M. & Muiruri, L.W. Barriers of access to primary healthcare services by National Health Insurance Fund capitated members in Uasin Gishu county, Kenya. BMC Health Serv Res 24 , 1025 (2024). https://doi.org/10.1186/s12913-024-11282-8

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