how many participants in qualitative research according to creswell

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• v.4(1); 2012 Mar

Qualitative Research Part II: Participants, Analysis, and Quality Assurance

This is the second of a two-part series on qualitative research. Part 1 in the December 2011 issue of Journal of Graduate Medical Education provided an introduction to the topic and compared characteristics of quantitative and qualitative research, identified common data collection approaches, and briefly described data analysis and quality assessment techniques. Part II describes in more detail specific techniques and methods used to select participants, analyze data, and ensure research quality and rigor.

If you are relatively new to qualitative research, some references you may find especially helpful are provided below. The two texts by Creswell 2008 and 2009 are clear and practical. 1 , 2 In 2008, the British Medical Journal offered a series of short essays on qualitative research; the references provided are easily read and digested. 3 – , 8 For those wishing to pursue qualitative research in more detail, a suggestion is to start with the appropriate chapters in Creswell 2008, 1 and then move to the other texts suggested. 9 – , 11

To summarize the previous editorial, while quantitative research focuses predominantly on the impact of an intervention and generally answers questions like “did it work?” and “what was the outcome?”, qualitative research focuses on understanding the intervention or phenomenon and exploring questions like “why was this effective or not?” and “how is this helpful for learning?” The intent of qualitative research is to contribute to understanding. Hence, the research procedures for selecting participants, analyzing data, and ensuring research rigor differ from those for quantitative research. The following sections address these approaches. table 1 provides a comparative summary of methodological approaches for quantitative and qualitative research.

A Comparison of Qualitative and Quantitative Methodological Approaches

Data collection methods most commonly used in qualitative research are individual or group interviews (including focus groups), observation, and document review. They can be used alone or in combination. While the following sections are written in the context of using interviews or focus groups to collect data, the principles described for sample selection, data analysis, and quality assurance are applicable across qualitative approaches.

Selecting Participants

Quantitative research requires standardization of procedures and random selection of participants to remove the potential influence of external variables and ensure generalizability of results. In contrast, subject selection in qualitative research is purposeful; participants are selected who can best inform the research questions and enhance understanding of the phenomenon under study. 1 , 8 Hence, one of the most important tasks in the study design phase is to identify appropriate participants. Decisions regarding selection are based on the research questions, theoretical perspectives, and evidence informing the study.

The subjects sampled must be able to inform important facets and perspectives related to the phenomenon being studied. For example, in a study looking at a professionalism intervention, representative participants could be considered by role (residents and faculty), perspective (those who approve/disapprove the intervention), experience level (junior and senior residents), and/or diversity (gender, ethnicity, other background).

The second consideration is sample size. Quantitative research requires statistical calculation of sample size a priori to ensure sufficient power to confirm that the outcome can indeed be attributed to the intervention. In qualitative research, however, the sample size is not generally predetermined. The number of participants depends upon the number required to inform fully all important elements of the phenomenon being studied. That is, the sample size is sufficient when additional interviews or focus groups do not result in identification of new concepts, an end point called data saturation . To determine when data saturation occurs, analysis ideally occurs concurrently with data collection in an iterative cycle. This allows the researcher to document the emergence of new themes and also to identify perspectives that may otherwise be overlooked. In the professionalism intervention example, as data are analyzed, the researchers may note that only positive experiences and views are being reported. At this time, a decision could be made to identify and recruit residents who perceived the experience as less positive.

Data Analysis

The purpose of qualitative analysis is to interpret the data and the resulting themes, to facilitate understanding of the phenomenon being studied. It is often confused with content analysis, which is conducted to identify and describe results. 12 In the professionalism intervention example, content analysis of responses might report that residents identified the positive elements of the innovation to be integration with real patient cases, opportunity to hear the views of others, and time to reflect on one's own professionalism. An interpretive analysis, on the other hand, would seek to understand these responses by asking questions such as, “Were there conditions that most frequently elicited these positive responses?” Further interpretive analysis might show that faculty engagement influenced the positive responses, with more positive features being described by residents who had faculty who openly reflected upon their own professionalism or who asked probing questions about the cases. This interpretation can lead to a deeper understanding of the results and to new ideas or theories about relationships and/or about how and why the innovation was or was not effective.

Interpretive analysis is generally seen as being conducted in 3 stages: deconstruction, interpretation, and reconstruction. 11 These stages occur after preparing the data for analysis, ie, after transcription of the interviews or focus groups and verification of the transcripts with the recording.

• Deconstruction refers to breaking down data into component parts in order to see what is included. It is similar to content analysis mentioned above. It requires reading and rereading interview or focus group transcripts and then breaking down data into categories or codes that describe the content.
• Interpretation follows deconstruction and refers to making sense of and understanding the coded data. It involves comparing data codes and categories within and across transcripts and across variables deemed important to the study (eg, year of residency, discipline, engagement of faculty). Techniques for interpreting data and findings include discussion and comparison of codes among research team members while purposefully looking for similarities and differences among themes, comparing findings with those of other studies, exploring theories which might explain relationships among themes, and exploring negative results (those that do not confirm the dominant themes) in more detail.
• Reconstruction refers to recreating or repackaging the prominent codes and themes in a manner that shows the relationships and insights derived in the interpretation phase and that explains them more broadly in light of existing knowledge and theoretical perspectives. Generally one or two central concepts will emerge as central or overarching, and others will appear as subthemes that further contribute to the central concepts. Reconstruction requires contextualizing the findings, ie, positioning and framing them within existing theory, evidence, and practice.

Ensuring Research Quality and Rigor

Within qualitative research, two main strategies promote the rigor and quality of the research: ensuring the quality or “authenticity” of the data and the quality or “trustworthiness” of the analysis. 8 , 12 These are similar in many ways to ensuring validity and reliability, respectively, in quantitative research.

 1. Authenticity of the data refers to the quality of the data and data collection procedures. Elements to consider include:

  • Sampling approach and participant selection to enable the research question to be addressed appropriately (see “Selecting Participants” above) and reduce the potential of having a biased sample.

  •  Data triangulation refers to using multiple data sources to produce a more comprehensive view of the phenomenon being studied, eg, interviewing both residents and faculty and using multiple residency sites and/or disciplines.

  • Using the appropriate method to answer the research questions, considering the nature of the topic being explored, eg, individual interviews rather than focus groups are generally more appropriate for topics of a sensitive nature.

  • Using interview and other guides that are not biased or leading, ie, that do not ask questions in a way that may lead the participant to answer in a particular manner.

  • The researcher's and research team's relationships to the study setting and participants need to be explicit, eg, describe the potential for coercion when a faculty member requests his or her own residents to participate in a study.

  • The researcher's and team members' own biases and beliefs relative to the phenomenon under study must be made explicit, and, when necessary, appropriate steps must be taken to reduce their impact on the quality of data collected, eg, by selecting a neutral “third party” interviewer.

 2. Trustworthiness of the analysis refers to the quality of data analysis. Elements to consider when assessing the quality of analysis include:

  • Analysis process: is this clearly described, eg, the roles of the team members, what was done, timing, and sequencing? Is it clear how the data codes or categories were developed? Does the process reflect best practices, eg, comparison of findings within and among transcripts, and use of memos to record decision points?

  • Procedure for resolving differences in findings and among team members: this needs to be clearly described.

  • Process for addressing the potential influence the researchers' views and beliefs may have upon the analysis.

  • Use of a qualitative software program: if used, how was this used?

In summary, this editorial has addressed 3 components of conducting qualitative research: selecting participants, performing data analysis, and assuring research rigor and quality. See table 2 for the key elements for each of these topics.

Conducting Qualitative Research: Summary of Key Elements

JGME editors look forward to reading medical education papers employing qualitative methods and perspectives. We trust these two editorials may be helpful to potential authors and readers, and we welcome your comments on this subject.

Joan Sargeant, PhD, is Professor in the Division of Medical Education, Dalhousie University, Halifax, Nova Scotia, Canada.

• Recognition

John Creswell on the Value of the Qualitative Approach

John W. Creswell

Say the name John Creswell in the presence of social and behavioral scientists and almost immediately you’ll start hearing fond remembrances of one or more of his books on qualitative methodology, quite likely on the mixed methods approach for which he’s been an apostle. And what an apostle – he’s written 28 books on mixed methods research, qualitative research and research design.

That loving response by students past and present, and the track record it represents, has been validated anew by the Textbook and Academic Authors Association (TAA), which this year is honoring one of Creswell’s most popular texts with its McGuffey Longevity Award, which honors well-written, well-research,, well-designed – and most importantly, well-received –books that have been in print for at least 15 years.

In honoring the book, the TAA judges cited two of the attributes that have long marked Creswell’s work, robust research design and absolute accessibility. “ Qualitative Inquiry and Research Design , ” the judges wrote, “ dependably reveals the research design path and provides navigational aids. No doubt it will continue to encourage more generations of researchers to embrace excellent qualitative research because of these attributes.” Taking advantage of the honor, we asked both Creswell and Poth about their work on the book, about trends in methods, and about their own academic journeys. John Creswell’s answers are below; read Cheryl Poth’s reflections on methodology and being asked to join up with a giant whose workshop “changed the course” of her career by clicking here..

Creswell is a professor of family medicine and co-director of the Michigan Mixed Methods Research and Scholarship Program at the University of Michigan. While at the University of Nebraska-Lincoln, he held the Clifton Endowed   Professor Chair, served as director of a mixed methods research office, founded the SAGE journal, the  Journal of Mixed Methods Research , and was an adjunct professor of family medicine at the University of Michigan and a consultant to the Veterans Administration.

The market has spoken as to whether your books — not just this one!– are successes. But from your vantage point, why are your books, and this one in particular, a success?

Over the years I have learned from readers that my books are successful because I simplify and clarify the basic research ideas so that a reader can easily learn how to conduct research. I have also been described as a clear, concise writer, and in my books, I share what has actually worked for me in research and talk about my own studies. This lends a personal touch to the writing. One of the best compliments I received for my writing came from a reader who asked me if I still practiced water aerobics because I had brought in as an example something from my water aerobics class in one of my books. What resonated with this person was my personal experience that helped the reader understand and remember my point about doing research.

What have you learned in between each edition?

I have learned how important ethics is in doing qualitative research and continue to expand my ethics discussion with each new edition. I have also learned that 5 approaches might be expanded to include more approaches, such as participatory action research and discourse analysis. But five approaches seems to be enough for the present moment, and I do not want to keep expanding the content of the book.

W hat was the original reason you wrote this particular book on the five approaches, as opposed to a different way to explain qualitative inquiry and research design?

I felt that qualitative research was not simply one type of design but many possibilities for the researcher. This was especially true after the early 1990s when specific books were being published on types of qualitative designs, such as grounded theory, phenomenology, and case studies. I felt that the researcher needed to select from among the different types of designs, and that my book could present the possibilities so that the researcher could make an informed decision as to what type of qualitative design would be best for their project. Thus, the Qualitative Inquiry and Research Design book put five approaches side-by-side so that a researcher might decide which approach was best for their project.

What was, or is, your own biggest stumbling block in deploying qualitative research methodology?

For many years I needed to convince researchers of the value of qualitative research. The approach to research had been primarily quantitative, statistically oriented research. So my challenge was to create the best argument possible for the value of qualitative research and why it was useful as an approach to research. This involved talking about how hearing the voices of participants was important, how specific words used by participants were important, and how the setting or context of the research situation was valuable to know. Today, I find that I have less to justify the use of qualitative research and focus more on how to actually employ the approach in an actual study.

While you’re certainly best-known in these parts for your advocacy and support of qualitative inquiry and mixed methods, your ‘day job’ is as a professor of family medicine. [He was a Senior Fulbright Scholar to South Africa in 2008 and to Thailand in 2012. In 2011, he co-led a national working group on mixed methods practices at the National Institutes of Health, served as a visiting professor at Harvard’s School of Public Health, and received an honorary doctorate from the University of Pretoria, South Africa.] Would you outline the overlap between those two spheres?

In family medicine at Michigan, I am a full-time researcher helping faculty and students prepare their research applications for funding sources. I also provide workshops on qualitative and mixed methods research. So in my day job at Michigan, I am continually employing my ideas about how to conduct good research. At Michigan I do not teach formal graduate courses, but my workshops do provide a teaching opportunity for me

While I know all the tips and approaches are valuable, if you were told to write a book with only one tip for research design, what would it be?

The one tip I would provide is to think about the parts of conducting research – the problem, the data collection, the data analysis, the interpretation – and consider how these parts interact. All of my books take the position that the “process of research” is fundamental to conducting and writing about research, and that a good research study portrays the interaction among all of the parts of research

While receiving an excellence award is certainly an honor in itself, what sort of actionable information does being recognized for having a text that has stood the test of time provide for your own writing/textbook creation?

With all of my new editions to my research books, I think that I am up to 28 books now, the question is, “Do I write another book?” I cannot answer this question right now, although I would like to write (and am writing my memoir) a literary book. Recognition gives me the incentive to continue writing more books, whether academic or literary in form. The habit of writing has certainly set in for me, and I am such that I will continue. The award just encourages me onward.

Michael Todd

Social Science Space editor Michael Todd is a long-time newspaper editor and reporter whose beats included the U.S. military, primary and secondary education, government, and business. He entered the magazine world in 2006 as the managing editor of Hispanic Business. He joined the Miller-McCune Center for Research, Media and Public Policy and its magazine Miller-McCune (renamed Pacific Standard in 2012), where he served as web editor and later as senior staff writer focusing on covering the environmental and social sciences. During his time with the Miller-McCune Center, he regularly participated in media training courses for scientists in collaboration with the Communication Partnership for Science and the Sea (COMPASS), Stanford’s Aldo Leopold Leadership Institute, and individual research institutions.

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Qualitative study design: Sampling

• Qualitative study design
• Phenomenology
• Grounded theory
• Ethnography
• Narrative inquiry
• Action research
• Case Studies
• Field research
• Focus groups
• Observation
• Surveys & questionnaires
• Study Designs Home

As part of your research, you will need to identify "who" you need to recruit or work with to answer your research question/s. Often this population will be quite large (such as nurses or doctors across Victoria), or they may be difficult to access (such as people with mental health conditions). Sampling is a way that you can choose a smaller group of your population to research and then generalize the results of this across the larger population.

There are several ways that you can sample. Time, money, and difficulty or ease in reaching your target population will shape your sampling decisions. While there are no hard and fast rules around how many people you should involve in your research, some researchers estimate between 10 and 50 participants as being sufficient depending on your type of research and research question (Creswell & Creswell, 2018). Other study designs may require you to continue gathering data until you are no longer discovering new information ("theoretical saturation") or your data is sufficient to answer your question ("data saturation").

Why is it important to think about sampling?

It is important to match your sample as far as possible to the broader population that you wish to generalise to. The extent to which your findings can be applied to settings or people outside of who you have researched ("generalisability") can be influenced by your sample and sampling approach. For example, if you have interviewed homeless people in hospital with mental health conditions, you may not be able to generalise the results of this to every person in Australia with a mental health condition, or every person who is homeless, or every person who is in hospital. Your sampling approach will vary depending on what you are researching, but you might use a non-probability or probability (or randomised) approach.

Non-Probability sampling approaches

Non-Probability sampling is not randomised, meaning that some members of your population will have a higher chance of being included in your study than others. If you wanted to interview homeless people with mental health conditions in hospital and chose only homeless people with mental health conditions at your local hospital, this would be an example of convenience sampling; you have recruited participants who are close to hand. Other times, you may ask your participants if they can recommend other people who may be interested in the study: this is an example of snowball sampling. Lastly, you might want to ask Chief Executive Officers at rural hospitals how they support their staff mental health; this is an example of purposive sampling.

Examples of non-probability sampling include:

• Purposive (judgemental)
• Convenience

Probability (Randomised) sampling

Probability sampling methods are also called randomised sampling. They are generally preferred in research as this approach means that every person in a population has a chance of being selected for research. Truly randomised sampling is very complex; even a simple random sample requires the use of a random number generator to be used to select participants from a list of sampling frame of the accessible population. For example, if you were to do a probability sample of homeless people in hospital with a mental health condition, you would need to develop a table of all people matching this criteria; allocate each person a number; and then use a random number generator to find your sample pool. For this reason, while probability sampling is preferred, it may not be feasible to draw out a probability sample.

Things to remember:

• Sampling involves selecting a small subsection of your population to generalise back to a larger population
• Your sampling approach (probability or non-probability) will reflect how you will recruit your participants, and how generalisable your results are to the wider population
• How many participants you include in your study will vary based on your research design, research question, and sampling approach

Further reading:

Babbie, E. (2008). The basics of social research (4th ed). Belmont: Thomson Wadsworth

Creswell, J.W. & Creswell, J.D. (2018). Research design: Qualitative, quantitative and mixed methods approaches (5th ed). Thousand Oaks: SAGE

Salkind, N.J. (2010) Encyclopedia of research design. Thousand Oaks: SAGE Publications

Vasileiou, K., Barnett, J., Thorpe, S., & Young, T. (2018). Characterising and justifying sample size sufficiency in interview-based studies: systematic analysis of qualitative health research over a 15-year period. BMC Medical Research Methodology, 18(148)

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• Last Updated: Jun 13, 2024 10:34 AM
• URL: https://deakin.libguides.com/qualitative-study-designs

Qualitative Research Methods: A Critical Analysis

11 Pages Posted: 13 May 2021

Northern Caribbean University

Enid F. Newell-McLymont

Date Written: May 13, 2021

Creswell (2014) noted that qualitative research is an approach for exploring and understanding the meaning individuals or groups ascribe to a social or human problem. The article embodies a critical analysis of chapters one to twelve of Stake (2010). In chapter one, Qualitative research: How things work is seen as qualitative, is based on a comprehensive aim seeking to answer the questions why and how. It analyzes actions and interactions, taking into account the intentions of the actors. An analytic perspective on the interpretation of the Person as an instrument is the thrust of chapter two. Chapter three examines the experiential understanding: Most qualitative study is experiential, in this chapter stake (2010) discusses two common research approaches, qualitative and quantitative methods. Chapter four Stating the Problem: Questioning How This Thing Works. Chapter five deals with the Methods-Gatherings Data, while chapter six illuminates the Review of Literature: Zooming to See the Problem. In chapter seven, the author implores the evidence: Bolstering Judgment and Reconnoitering. Chapter eight propels Analysis and Synthesis: How Things Work. Chapter nine acts as a mirror that invites the researcher to examine their action research and Self-­Evaluation: Finding our Own How our Place Works. Finally, in chapters ten to twelve, the author compels Storytelling: Illustrating How Things Work, Writing the Final Report: An Iterative Convergence, and Advocacy and Ethics: Making Things Work Better. This work is expected to guide future researchers in developing their research in qualitative research.

Keywords: Qualitative Research, The Thing, Review of Literature, Evidence, Triangulation, Bias

Suggested Citation: Suggested Citation

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Northern caribbean university ( email ), do you have a job opening that you would like to promote on ssrn, paper statistics, related ejournals, engineering education ejournal.

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The Process Of Qualitative Interview: Practical Insights For Novice Researchers

Qualitative research offers a thorough investigation into a particular phenomenon or an issue. The nature of this approach is considered particularly useful in the study of behavioural issues, personal, and sensitive topics. Moreover, this approach gives researchers the proper tools to understand issues and problems in their natural settings. Data collection tools in qualitative research differ from one approach to another. Nevertheless, interviews remain one of the most crucial tools in extracting rich and genuine insights about the issues being studied. Additionally, it grants the researchers close access to the participants’ perspectives and experiences. However, most researchers enter this arena without any prior experience or sound knowledge about the required skills to ensure an effective and dynamic interviewing process. Unlike quantitative research, qualitative data collection tools can be puzzling especially if this was coupled with the lack of experience. Thus, this study presents practical insights pertaining some effective ways to conduct proper interviewing process. The study was conducted relying on both document analysis and field-work experience. These practical insights are geared towards novice researchers. Also, these prerequisite steps are based on fieldwork experience as well as previous academic literature works.

Keywords: Data collection , interviews , qualitative research , social science

Introduction

The endeavours to sculpture the most effective approach in investigating theoretical and practical problems have been of a constant concern for social science scholars. Qualitative research is one of the fast-growing methods; this approach is designed to explore social interactions and comprehend people’s perspective, delves into individuals’ experiences, the nature of their behaviours, and what affects their behaviour. According to ( Pope & Mays, 1995, pp. 42-45 ) qualitative research is all about “reaching the parts other methods cannot reach.” ( Rowan & Huston, 1997 ). Thus, it involves a systematic process of collecting, organizing, and interpreting the derived data from interviews, observations, documents and other artefacts.

Qualitative methods are utilized mainly in the investigation and the study of meanings pertaining to social phenomena as encountered by individuals themselves, in their day to day life ( Malterud, 2001 ). Recently, Qualitative approaches have developed into a vast and sometimes almost perplexing field of research. However, these approaches have become part of the preparation in empirical research methods in different fields of study and in a wide range of scholarly disciplines. This wide variety of fields extends from psychology to sociology, to educational and economic studies, to cultural and behavioural studies, etc. ( Jenner et al., 2004 ). However, ( Creswell, 2007, p. 129 ) stated that while there are different types of data in qualitative research, all data falls into four primary categories “observations, interviews, documents, and audio-visual materials” ( Jacob & Furgerson, 2012, p. 1 ).

One of the primary sources of data in qualitative research is obtained through one-on-one interviews or focus-group interviews. Qualitative interviewing is a powerful and flexible research tool which can be utilized to discover and explore new ranges of research ( Britten, 1995 ). Among the various types of qualitative interviewing; semi-structured is the one widely used in social sciences disciplines. This type of interview is conducted based on flexible structure comprised of open-ended questions that articulate the issue to be explored, at least, to begin with, then the researcher or the participant may diverge and extend his answer in order to follow up an idea in more details ( Britten, 1995 ). Furthermore, the purpose of using semi-structured interviewers is to attempt to be sensitive and interactive to the concepts and words expressed by the interviewee and try to keep the interview guide flexible. Its purpose also is to plunge below the surface of the issue being investigated, examine what interviewees say in great detail, and unveil new insights, ideas, and concepts which were not expected at the beginning of the investigation. Additionally, one crucial aspect of interviewing is that the researcher should grasp interviewees’ meanings instead of depending on their presumptions.

Interviewing is a crucial research tool, and it is rapidly becoming a vital instrument in qualitative research. Even though much has been written on how to analyse and interpret qualitative data cultivated from interviews and observations. Nevertheless, far less has been written on how to conduct an effective and robust interviewing process. The primary purpose of this paper is to offer practical techniques on how to prepare and conduct qualitative one-on-one semi-structured interviews. As researchers, we need the stories of people for various purposes. They assist us in uncovering phenomena, allow us to describe people, and offer many improvements in different fields of research. By authentically nurturing the stories of others, not just our different areas of studies but also qualitative research will be improved by what we learn ( Jacob & Furgerson, 2012 ). Most importantly, interviews are effective tools by which we can investigate and address real-life problems. .

Problem Statement

Qualitative research has gained an important status across the different disciplines of social sciences. However, the application of the various qualitative approaches is less common compared to quantitative approaches. This is mainly due to the lack of resources that provide comprehensive and practical knowledge on the different steps and requirements of conducting proper qualitative research. Moreover, most people, especially students and novice researchers have very limited exposer to qualitative approaches during their education and training. Most academic and professional training focuses more on quantitative approaches while neglecting the importance and uniqueness of qualitative research.

Qualitative research provides researchers with the tools that allow them to delve deeply into meanings, social and organizational issues, and closely engage with phenomenon in their natural settings. Worldwide, qualitative researchers investigate the tapestries of daily existences, people's understandings, memories and imaginations, the ways in which social structures, organisations, discourses, or relationships operate, and the importance of the interpretations they create ( Chowdhury, 2015 ). Yet, most research students and novice researchers are less inclined and prepared to adopt qualitative research in their research. Furthermore, despite the abundant school of thoughts, philosophies, and theories on qualitative research approaches. Practical guides on the different phases of qualitative research are far behind other research approaches, especially within the disciplines of social sciences. Thus, it is important for qualitative researchers and scholars to generate practice-based insights for novice researchers and students in order to help them enter and thrive within the field of qualitative research. In line with this, the current study focused on providing insights on conducting effective qualitative data collection using semi-structured interviews.

Research Questions

The study was guided by one main research question - what are the necessary skills and/or steps in conducting effective qualitative data collection using semi-structured interviews?

Purpose of the Study

The purpose of this study is to identify the best skills and/or steps in conducting qualitative data collection using semi-instructed interview. The following parts of this study discuss the skills and steps by which researchers can improve the quality of their data collection process through semi-structured interviews. The following four tips are recommended for beginner researchers in the fields of social sciences who seek to establish robust knowledge and practice in qualitative research interviewing. However, this paper does not claim to offer one-fits-all techniques; these suggested insights are the result of field-work experience in semi-structured qualitative interviewing backed by previous academic works. Hence, it is not holistic nor above criticism as it reflects a personal research experience. The ultimate purpose of this paper is to improve the experience of qualitative data collection through interviewing and interacting with respondents. Finally, it is important to bear in mind that there are various schools of thoughts regarding the nature as well as the procedures of qualitative research. Nevertheless, taken together, the steps presented in this study offer a practical guide to a better data collection process using semi-structured interviews.

Research Methods

The study was conducted relying on both document analysis and field-work experience to collect and analyse the data. Document analysis is a qualitative research approach where documents and previous scholarly works are evaluated and reviewed in a systematic manner to answer the research question. This approach can assist researchers in uncovering meanings, discovering insights, and developing an understanding about the relevant research issue ( Bowen, 2009 ). The findings of this study are the results of a mixture of previous scholarly work and field-based experiences of the researchers.

The following sections present the key steps and techniques in conducting effective qualitative data collection using semi-structured interviews.

Preparation for the Interview Process

The various qualitative research designs are focused on gaining a deep and detailed understanding of a particular phenomenon or are concerned with meanings that are embedded in the why and how of a specific process, issue, scene, situation, a subculture or a group of social interactions ( Dworkin, 2012 ). For this reason, an essential step in the process of qualitative research is to carefully locate potential people or places to study. Also, researchers should plan for, and anticipate, in advance for any possible obstacles in gain access to organizations or individuals. Another important aspect in the initial stages of data collection is to be aware of the most research tools that can be applied to create rapport with respondents so that they will be willing to give valuable information. A strongly interrelated phase in qualitative research includes identifying a method for the purposeful sampling of sites or individuals ( Creswell & Creswell, 2017 ).

When we interview, we ask people to share their stories, their personal experiences, and perspectives ( Jacob & Furgerson, 2012 ). Hence, gaining proper knowledge about the respondents of the study is crucial if the researcher wants to build trust with the interviewees. Doing background research on the respondents, their field of work, level of education, their organizational and cultural context is essential to the process of interviewing. Approaching the respondents without prior knowledge of their background can lead to several issues that can influence the effectiveness of the interviewing process and might result in mistrust or misunderstanding especially if the issue being investigated of relative sensitivity. This is most relevant in cross cultural studies. Additionally, the data collection process is a series of interrelated activities which aim at collecting robust information to address emerging questions ( Creswell & Poth, 2016 ). A significant part of this interconnected process of qualitative data collection is getting familiar with the subjects of the study before starting the interview process. There must be a consistency between the different stages of qualitative research.

More so, according to Creswell & Creswell ( 2017 ), the current discussion on qualitative interviewing stresses on the significance of reflecting upon the relationship between the researcher and the participants of the study ( Creswell & Creswell, 2017 ). collecting and analysing information related to the interview’s issues and subjects is a crucial initial step in the preparation of the interview. This information offers ideas and concepts for potential questions and assists in understanding the interviewees’ cultural context and the environment where they live ( Dilley, 2000 ). One way to make sure that the interview process will be conducted smoothly is to start with a pilot testing with few respondents or experts in the field of study. The pre-testing of the interview structure can guarantee that the interview structure is well-suited for the study, and most importantly, to assure a positive engagement from the part of the respondents. Knowing the respondents in terms of their educational, cultural, and organizational backgrounds helps in improving interviewer-interviewees relationship and mentally prepare the researcher for issues that might raise during the field work.

Timeframe and Funding

Very often, researchers neglect the issue of time and finding out of enthusiasm and eagerness to explore and investigate an issue of interest. Yet, without securing enough funding for the data collection phase, the process can be of a great challenge. Depending on personal resources can be financially exhausting. Collecting qualitative data using interviews is undoubtedly a taxing process, this is particularly relevant for novice researchers involved in research projects that require an extensive interviewing process such as grounded theory, case study research, and phenomenology. For example, Equipment issues are one of the concerns in conducting interviews; recording tools and transcribing equipments are required to be well-organized prior to the interview process ( Creswell & Creswell, 2017 ).

The ambition of conducting a robust data collection process should also coincide with the amount of time the researcher can have. Some research projects require a long period of time and in some cases a team of collaborators and research associates. Thus, having enough funding or proper financial sources is very crucial to the success of any research project. Novice researchers using qualitative approaches are usually challenged by the volume of time required to gather qualitative data and also by the richness of the collected data. Thus, novice researchers could ease this process by engaging in a limited data collection phase and start with a pilot study to acquire initial experience ( Doody & Doody, 2015 ). The limited data collection phase may include one or two observations or interviews for the purpose of estimating the needed time to collect sufficient data ( Creswell & Creswell, 2017 ).

Developing the Interview Questions

One of the most important elements of the interview design is creating effective and coherent research questions ( Turner III, 2010 ). Preparing the interview guide or the interview questions is vital to the effectiveness of the data collection. Interview questions work as roadmap for the journey we want our interviewees to take. These questions serve as a map we suggest for our respondents to guide them to markers and landmarks that we believe are crucial to our study and to the understanding of the issue being studied. Likewise, an interview is a communication act and the researcher are one of its main actors. The interview questions work as a script for us to refer to, but similar to every good actor, the interviewer should know his lines well before the curtain rises ( Dilley, 2000 ). The process of qualitative research is highly connected, this means that to develop clear and effective interview questions requires a clear and focused research question which implies that the purpose of the study must not be ambiguous and be clearly articulated.

Crafting the proper interview questions requires careful attention to the objective of the research and the nature of the study. Some sensitive topics require the involvement of experts in the field in order to avoid offending the respondents or ending up with superficial and/or insincere answers. Before even drafting the first interview question, the researcher should know what the research literature says about the respondents that might be involved in the study. A rigorous understanding of the key purpose of the research leads to a better structuring of interview questions that are grounded on the previous literature as well as the peculiarity of the issue being investigated. Also, the researcher needs to be aware of what differs from what previous research says, and which still need to be answered. It also helps in focusing or narrowing the interview questions in a way that will generate meaningful information ( Jacob & Furgerson, 2012 ). It is recommended that each research question to have a maximum of three interview questions. Moreover, some research questions require two or three interview questions in order to address different aspects of the issue being investigated. However, the researcher should be flexible and committed according to the nature of the study. This means that some broad research questions require more than three interview questions in order to fully cover the objective of the research.

After creating the main interview questions, the researcher moves to the next step which is drafting the probing questions or follow up questions. Probing questions are also a very useful tool in persuading the respondents in giving more information on the issue being investigated. Also, very often, some researchers try to strictly adhere to the interview guide, which may restrain them from getting valuable information. Having a well-structured interview guide is a necessity. However, the researcher needs to be resilient and steer the questions depending on the willingness of respondents to open up for more insights. With all that mentioned, As stated by Patton, good questions in qualitative interviews should be open-ended, neutral, sensitive, and clear to the interviewee ( Britten, 1995 ). It is important to mention that, follow-up questions should be based on the respondents' responses to pre-constructed questions. One way to keep the interviewer on track is by creating prompts or probes for each question. These probing questions assist in reminding the interviewer of his questions while at the same time give opportunity to unexpected information to emerge ( Jacob & Furgerson, 2012 ).

A proper interview guide should include an introductory section which contains an opening statement about the role and the position of the interviewer, an overview on the issue of the interview, and objective of the study. The introductory section should also include a brief explanation on guidelines and rules during the interview session which will help in making the process smooth and transparent. The second section of the interview guide should include the opening questions, key questions, probing questions, and ending questions ( Krueger, 2014 ). A well-structured interview guide is very crucial to the success of any interview session; it works as road map for the researcher towards the attainment of relevant data. Furthermore, the interview questions should involve the respondents and make them positively engaged in a fruitful discussion which will bring to light their perspectives and views ( Krueger, 2014 ).

Another significant aspect is that the interviewer should be aware of his communication skills. People skills are very decisive in increasing the reliability of the collected information, and the most vital communication skills is to show an interest in the respondent views and experiences to create a more friendly environment for the interviewee. As stated by Dilley “We must be inquisitive, intrusive perhaps but always in a polite and questioning manner” ( Dilley, 2000, p. 136 ). In addition, after a proper structuring of the interview questions, a pilot test is necessary as mentioned earlier to assist the interviewer in detecting possible weaknesses, flaws, or other limitations related to the design of the interview and give him/her the opportunity to make necessary modification before embarking in the data collection process ( Turner III, 2010 ).

Planning the Nature of the Interview Session

In deciding on the nature of the interview sessions, several factors should be considered prior to the process of interviewing. The interviewer should be aware of the roles and the positions of respondents of the study and their work schedule. This is important because some respondents might be more comfortable with phone interviews instead of face-to-face interviewing due to their hectic schedule. Others, on the other hand, prefer to meet and get to know the interviewer. These two forms of interviewing raise the question of the quality of recording devices; in some cases, the researcher needs to supplement the recording process with notes to fully capture the answers and perspectives of respondents.

Another important decision to make about the interview session is the location, the place where the interviewing process will be taking place is crucial to the attainment of sound data. Friendly, peaceful and less destructive location is best suitable for an effective interview session. Thus, the respondents should be included in making the decision about the location of the interview. These factors greatly affect the effectiveness of the respondents' willingness to participate positively in the study and avoid rejection. To create a perfect environment for the interview session, the choice of location and the timing are two major factors. Moreover, listening skills are a factor of great importance in the process of qualitative data collection and it is perhaps one of the most difficult to learn ( Dilley, 2000 ). The researcher wants to build trust with the interviewee as he or she collects important background data. This can be achieved by looking at the literature to help you decide what background data is important to collect ( Jacob & Furgerson, 2012 ).

In addition, the interview guide should offer wording that will help the researcher to ease any concerns the participant might have about confidentiality of information. This can be attained by giving participants plenty of time to read through the form and ask as many questions as she or he needs to ask. Also, the researcher should ensure that the interviewees understand that the interviewer will hold their confidence and that they may withdraw from the study at any time is an important aspect of gaining their trust. Building trust with the participants of the study will grant the researcher access to their authentic experiences which will help the trustworthiness of the study and the quality of the collected data. According to Creswell and Creswell ( 2017 ) given the complex skills required for conducting an effective interview, it is no surprise that the interview process is often referred to as a “craft” which can be developed by practice ( Creswell & Creswell, 2017 ).

Finally, the interviewees are the key source of information in qualitative research across a wide field of studies. Therefore, the researcher should provide a clear map to the purpose of the study and simplify the terms and key concepts of the interview questions. Participants should find no difficulties understanding its intended meaning, especially if the issue being investigated requires a thorough probing. According to Dilley ( 2000 ), interviewees need to be comfortable during the interview session, especially if a study addresses deep and complex issues. They also need to feel confident of their ability to respond to the interview’s questions and to have a clear idea on how their experiences fit in the study. This will often make interviewees reflect on their responses and sometimes provide multiple or extensive answers ( Dilley, 2000 ).

The main purpose of the current paper is to offer practical insights on the process of qualitative data collection through semi-structured interviews for novice researchers. The paper has presented four important steps for an effective interview process based on both practical experience and previous scholarly work. Although this study focuses on one-on-one interviews in data collection, the presented steps may well be useful for other forms of interviews. This paper contributes to the existing knowledge of qualitative research by providing practical tools and insights that can yield a better data collection process. The previous steps if put into practice by researchers, it will ease and boost the effectiveness and the realization of a robust interviewing process.

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Benlahcene, A., & Ramdani, A. (2021). The Process Of Qualitative Interview: Practical Insights For Novice Researchers. In C. S. Mustaffa, M. K. Ahmad, N. Yusof, M. B. M. H. @. Othman, & N. Tugiman (Eds.), Breaking the Barriers, Inspiring Tomorrow, vol 110. European Proceedings of Social and Behavioural Sciences (pp. 405-413). European Publisher. https://doi.org/10.15405/epsbs.2021.06.02.52

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Qualitative Inquiry

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This chapter discusses the nature of the qualitative inquiry. Qualitative inquiry refers to “a broad approach” that qualitative researchers adopt as a means to examine social circumstances. The inquiry is based on an assumption which posits that people utilize “what they see, hear, and feel” to make sense of social experiences. There are many features that differentiate qualitative inquiry from the quantitative approach. Fundamentally, it is interpretive. The meanings and interpretations of the participants are the essence of qualitative inquiry. Qualitative researchers can be perceived as constructivists who attempt to find answers in the real world. Fundamentally, qualitative researchers look for meanings that people have constructed. Qualitative research is valuable in many ways. It offers researchers to hear silenced voices, to work with marginalized and vulnerable people, to address social justice issues, and to contribute to the person-centered healthcare and the design of clinical trials. The chapter discusses in great depth the distinctive features of the qualitative inquiry. In particular, it includes the inductive nature of qualitative research, methodological frameworks, purposive sampling technique, saturation concept, qualitative data analysis, and the trustworthiness of a qualitative study.

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Creswell, J. W. (2014). Research Design: Qualitative, Quantitative and Mixed Methods Approaches (4th ed.). Thousand Oaks, CA: Sage

The book Research Design: Qualitative, Quantitative and Mixed Methods Approaches by Creswell (2014) covers three approaches-qualitative, quantitative and mixed methods. This educational book is informative and illustrative and is equally beneficial for students, teachers and researchers. Readers should have basic knowledge of research for better understanding of this book. There are two parts of the book. Part 1 (chapter 1-4) consists of steps for developing research proposal and part II (chapter 5-10) explains how to develop a research proposal or write a research report. A summary is given at the end of every chapter that helps the reader to recapitulate the ideas. Moreover, writing exercises and suggested readings at the end of every chapter are useful for the readers. Chapter 1 opens with-definition of research approaches and the author gives his opinion that selection of a research approach is based on the nature of the research problem, researchers' experience and the audience of the study. The author defines qualitative, quantitative and mixed methods research. A distinction is made between quantitative and qualitative research approaches. The author believes that interest in qualitative research increased in the latter half of the 20th century. The worldviews, Fraenkel, Wallen and Hyun (2012) and Onwuegbuzie and Leech (2005) call them paradigms, have been explained. Sometimes, the use of language becomes too philosophical and technical. This is probably because the author had to explain some technical terms.

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Conducting a well-established research requires deep knowledge about the research designs. Doing research can be likened to jumping into the sea which may transform into a huge ocean if the researcher is not experienced. As a PhD candidate and a novice researcher, I believe that the book "Research Design: Qualitative, Quantitative and Mixed Methods Approaches" by J.W. Creswell is a true reference guide for novice researchers since it is the most comprehensive and informative source with its reader-friendly structure.

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How many participants do I need for qualitative research?

• Participant recruitment
• Qualitative research

6 min read David Renwick

For those new to the qualitative research space, there’s one question that’s usually pretty tough to figure out, and that’s the question of how many participants to include in a study. Regardless of whether it’s research as part of the discovery phase for a new product, or perhaps an in-depth canvas of the users of an existing service, researchers can often find it difficult to agree on the numbers. So is there an easy answer? Let’s find out.

Here, we’ll look into the right number of participants for qualitative research studies. If you want to know about participants for quantitative research, read Nielsen Norman Group’s article .

Getting the numbers right

So you need to run a series of user interviews or usability tests and aren’t sure exactly how many people you should reach out to. It can be a tricky situation – especially for those without much experience. Do you test a small selection of 1 or 2 people to make the recruitment process easier? Or, do you go big and test with a series of 10 people over the course of a month? The answer lies somewhere in between.

It’s often a good idea (for qualitative research methods like interviews and usability tests) to start with 5 participants and then scale up by a further 5 based on how complicated the subject matter is. You may also find it helpful to add additional participants if you’re new to user research or you’re working in a new area.

What you’re actually looking for here is what’s known as saturation.

Understanding saturation

Whether it’s qualitative research as part of a master’s thesis or as research for a new online dating app, saturation is the best metric you can use to identify when you’ve hit the right number of participants.

In a nutshell, saturation is when you’ve reached the point where adding further participants doesn’t give you any further insights. It’s true that you may still pick up on the occasional interesting detail, but all of your big revelations and learnings have come and gone. A good measure is to sit down after each session with a participant and analyze the number of new insights you’ve noted down.

Interestingly, in a paper titled How Many Interviews Are Enough? , authors Greg Guest, Arwen Bunce and Laura Johnson noted that saturation usually occurs with around 12 participants in homogeneous groups (meaning people in the same role at an organization, for example). However, carrying out ethnographic research on a larger domain with a diverse set of participants will almost certainly require a larger sample.

Ensuring you’ve hit the right number of participants

How do you know when you’ve reached saturation point? You have to keep conducting interviews or usability tests until you’re no longer uncovering new insights or concepts.

While this may seem to run counter to the idea of just gathering as much data from as many people as possible, there’s a strong case for focusing on a smaller group of participants. In The logic of small samples in interview-based , authors Mira Crouch and Heather McKenzie note that using fewer than 20 participants during a qualitative research study will result in better data. Why? With a smaller group, it’s easier for you (the researcher) to build strong close relationships with your participants, which in turn leads to more natural conversations and better data.

There’s also a school of thought that you should interview 5 or so people per persona. For example, if you’re working in a company that has well-defined personas, you might want to use those as a basis for your study, and then you would interview 5 people based on each persona. This maybe worth considering or particularly important when you have a product that has very distinct user groups (e.g. students and staff, teachers and parents etc).

How your domain affects sample size

The scope of the topic you’re researching will change the amount of information you’ll need to gather before you’ve hit the saturation point. Your topic is also commonly referred to as the domain.

If you’re working in quite a confined domain, for example, a single screen of a mobile app or a very specific scenario, you’ll likely find interviews with 5 participants to be perfectly fine. Moving into more complicated domains, like the entire checkout process for an online shopping app, will push up your sample size.

As Mitchel Seaman notes : “Exploring a big issue like young peoples’ opinions about healthcare coverage, a broad emotional issue like postmarital sexuality, or a poorly-understood domain for your team like mobile device use in another country can drastically increase the number of interviews you’ll want to conduct.”

In-person or remote

Does the location of your participants change the number you need for qualitative user research? Well, not really – but there are other factors to consider.

• Budget: If you choose to conduct remote interviews/usability tests, you’ll likely find you’ve got lower costs as you won’t need to travel to your participants or have them travel to you. This also affects…
• Participant access: Remote qualitative research can be a lifesaver when it comes to participant access. No longer are you confined to the people you have physical access to — instead you can reach out to anyone you’d like.
• Quality: On the other hand, remote research does have its downsides. For one, you’ll likely find you’re not able to build the same kinds of relationships over the internet or phone as those in person, which in turn means you never quite get the same level of insights.

Is there value in outsourcing recruitment?

Recruitment is understandably an intensive logistical exercise with many moving parts. If you’ve ever had to recruit people for a study before, you’ll understand the need for long lead times (to ensure you have enough participants for the project) and the countless long email chains as you discuss suitable times.

Outsourcing your participant recruitment is just one way to lighten the logistical load during your research. Instead of having to go out and look for participants, you have them essentially delivered to you in the right number and with the right attributes.

We’ve got one such service at Optimal Workshop, which means it’s the perfect accompaniment if you’re also using our platform of UX tools. Read more about that here .

So that’s really most of what there is to know about participant recruitment in a qualitative research context. As we said at the start, while it can appear quite tricky to figure out exactly how many people you need to recruit, it’s actually not all that difficult in reality.

Overall, the number of participants you need for your qualitative research can depend on your project among other factors. It’s important to keep saturation in mind, as well as the locale of participants. You also need to get the most you can out of what’s available to you. Remember: Some research is better than none!

Capture, analyze and visualize your qualitative data.

Try our qualitative research tool for usability testing, interviewing and note-taking. Reframer by Optimal Workshop.

Published on August 8, 2019

David Renwick

David is Optimal Workshop's Content Strategist and Editor of CRUX. You can usually find him alongside one of the office dogs 🐕 (Bella, Bowie, Frida, Tana or Steezy). Connect with him on LinkedIn.

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Facilitators, barriers and support needs to GLA:D exercise adherence – a mixed method study

• Franziska Matile 1 ,
• Irina Nast 1 &
• Karin Niedermann 1  

BMC Sports Science, Medicine and Rehabilitation volume  16 , Article number:  130 ( 2024 ) Cite this article

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Knee and hip osteoarthritis (OA) are among the most common musculoskeletal joint diseases worldwide. International guidelines recommend exercise and education as first-line interventions for their management. The Good Life with osteoArthritis Denmark (GLA:D) programme aims to achieve self-management using group exercise and education sessions. It also encourages participants to stay physically active and perform GLA:D exercises (GE) twice weekly after programme end. This study investigated the participants’ self-reported level of physical activity (PA) and self-reported adherence to the GE between five and 17 months after completion of the GLA:D programme and also explored the barriers, facilitators and support needs to achieve long-term adherence to GE.

A mixed method study using an exploratory sequential design was performed. A qualitative phase, involving semi-structured interviews and a focus group, led to the development of a questionnaire on participants’ level of PA, as well as ratings of the barriers, facilitators and support needs for the achievement of long-term adherence to GE. In a second quantitative phase, the survey was conducted online with former GLA:D participants from Switzerland. Descriptive statistical analysis and a group comparison between adherent and non-adherent participants to the GE were performed using Fisher’s exact test, odds ratio, and confidence interval.

Eleven former GLA:D participants attended the interviews and focus group, and former GLA:D participants (30% response rate) participated in the survey. Of these, 84% ( n  = 285) reported to reach the recommended level of PA and 53% ( n  = 178) GE adherence. The top barrier to GE adherence was no/little self-discipline to perform GE (40%, n  = 112) and the top facilitator was GE are easy to perform (93%, n  = 300). The top 3 items regarding support needs to enhance GE adherence were a shortened version (max. 30 min) of the GE home programme (75%, n  = 255), monthly continuation of small GE groups under GLA:D physiotherapists’ supervision (65%, n  = 221), and monitoring with  regular testing of individual progress (65%, n  = 221).

Conclusions

The top barriers and facilitators should be considered by those responsible for the GLA:D programme and may need to be specifically addressed during and after the programme. The development of a shortened version of the GLA:D programme, a post-GLA:D group, and monitoring with regular testing seem crucial for enhancing GE adherence.

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Peer Review reports

Osteoarthritis (OA) is the most common musculoskeletal joint disease worldwide [ 1 ]. A large proportion of the affected people suffer from OA of the weight-bearing joints, with knee OA and hip OA mostly common [ 2 ]. The most important symptoms are pain, impaired physical function and reduced quality of life [ 3 ]. Thus, OA not only has a significant negative impact on the affected individuals, but also on the health system due to high socio-economic costs [ 4 ]. The Global Burden of Disease Study 2017 revealed a global point prevalence of 3,754.2/100,000 and an annual incidence of 181.2/100,000 persons with OA across 195 countries [ 2 ]. The same study showed a 9.3% global rise in the prevalence of OA between 1990 and 2017 along with an increase in prevalence with age, confirming that elderly people are more often affected. With increasing life expectancy, a rise in future prevalence is very likely [ 2 ]. Effective OA management is of great importance in order to minimise the personal and socio-economic consequences of OA [ 4 ].

International clinical guidelines for the management of OA recommend exercise and education as first-line interventions [ 5 , 6 ]. Exercise is a subset of physical activity (PA) that is “planned, structured and repetitive, and has as a final or an intermediate objective, the improvement or maintenance of physical fitness” [ 7 ]. It is important to provide education alongside exercise for people with knee and hip OA [ 8 ]. The World Health Organisation (WHO) 2020 guidelines for PA [ 9 ] recommend persons being physically active at moderate intensity for at least 150 to 300 min a week or, alternatively, at vigorous intensity for at least 75 to 150 min a week, or a combination of both intensities and a reduction in sedentary time. For additional health benefits, it is recommended to perform muscle-strengthening activities on two or more days a week.

The Good Life with osteoArthritis Denmark (GLA:D) programme was developed in Denmark in 2013 as an implementation of the international clinical guidelines for the management of knee and hip OA into clinical practice [ 5 , 6 ]. In the GLA:D programme, GLA:D-certified physiotherapists provide two group patient education sessions and 12 exercise group sessions. Its aims are to relieve pain, improve physical function and quality of life, and promote self-management strategies to foster long-term adherence to PA and GE [ 10 ]. The GE programme includes 10 exercises that are standardised but indivdualised on four levels of progressive difficulty. Neuromuscular exercises (NEMEX) form the core of the GE, together with core strengthening and walking exercises. Each participant performs his/her individual exercise programme, which is regularly adapted to achieve progress. Participants are recommended to continue performing the GE at least twice weekly after completion of the programme. The GLA:D programme has been implemented in Switzerland since 2019. The results of the GLA:D programmes, both internationally [ 11 ] and in Switzerland [ 12 ], show remarkable improvements in pain, physical function and quality of life at programme end, which are sustained at the one-year follow-up. The knee pain was reduced by 27% directly after the programme and by 26% in the one-year follow-up. The knee physical function was improved by 16% directly after the programme and by 12% after one-year follow-up [ 12 ]. These results of an implementation (i.e. best practice) project are notable, since research usually shows that PA interventions for knee and hip OA are effective at improving outcomes only for a short period (≤ six months after intervention cessation) [ 13 ].

There is evidence that the majority of people with knee and hip OA are less active than healthy people [ 14 ] and that only a small to moderate proportion of these people meet the recommended level of PA [ 15 ]. The study by Pisters et al. showed that the recommended level of PA and exercise adherence declined 15 months after a PA-enhancing intervention [ 16 ], thus justifying the need for long-term support of PA and exercise adherence. Additionally, Pisters et al. found a positive relationship between adherence to PA and exercise and intervention outcomes in people with knee and hip OA [ 16 ]. The WHO defines adherence as “the extent to which a person’s behaviour […] corresponds with agreed recommendations from a health care provider” [ 17 ].

Investigation of barriers and facilitators is important in obtaining a better understanding of long-term adherence to GLA:D exercises. General barriers and facilitators of PA in people with knee and hip OA have already been the subject of research [ 18 , 19 ]. In Kanavaki et al., the main barriers were found to be pain, physical limitations, negative PA experiences, lack of motivation and behavioural regulation, whereas the main facilitators identified were positive PA experience, knowledge, adjusting and prioritising PA and social support [ 19 ].

To date, little is known about the barriers, facilitators and support needs affecting adherence to PA and GE after the GLA:D programme, although it can be assumed that the GE and education programme reduces some of the barriers and strengthens some of the facilitators.

An understanding of the most important factors influencing long-term adherence to GE and the incorporation of effective interventions to support long-term adherence to GE are critical. Cinthuja et al. showed some effective strategies to improve long-term exercise adherence by people with lower limb OA, such as providing booster-sessions and telephone-linked communication [ 20 ].

This study aims to investigate GLA:D Switzerland participants’ self-reported level of PA and self-reported adherence to GE between five and 17 months after programme completion, as well as to explore the barriers, facilitators and support needs to achieve GE long-term adherence.

Study design

A mixed-methods study with an ‘exploratory sequential design’ was conducted [ 21 ]. The study was carried out in two phases: (1) a qualitative phase, during which semi-structured individual interviews and a focus group were carried out, serving as basis for (2) a quantitative phase, when an online survey was performed. More details to the mixed-methods study design can be found in the flow chart in Fig.  1 .

Mixed method study design flow chart

Qualitative phase

Setting and participants.

The participants were recruited by certified GLA:D PTs from the surroundings of the University (within a radius of 25 km), by means of the purposive sampling method. Inclusion criteria were: (1) Adult (> 18 years); (2) Between 1 and 20 months after conclusion of the GLA:D programme; (3) written and spoken Swiss German or German language skills; and (4) written informed consent. Additionally, a maximum variation strategy was followed by the researchers when including participants by covering a broad range of demographic and disease-related characteristics in terms of age, gender, knee OA, hip OA and rural or urban living. Due to availability of the participants, participants were allocated either to the individual interview or to the focus group setting, depending on their time availability. Individual telephone interviews and a face-to-face focus group were conducted between August and October 2021, following the practical guide for focus groups by Krueger [ 22 ]. The individual interviews lasted between 25 and 30 min. The focus group took place at the Zurich University of Applied Sciences in Winterthur and was of 90 min duration. Two experienced physiotherapy researchers conducted the individual interviews (KN ( n  = 2), IN ( n  = 1)) and the focus group (KN, IN). The focus group was moderated by IN and KN took field notes. The individual interviews and the focus group were conducted in the Swiss German language and were audiotaped. As the interviews and focus group were originally developed in German, the materials were translated into English for the purpose of this publication. The language was translated with DeepL Translator and revised by a native speaker.

Interviews and focus group

In a first step, a question guide for the semi-structured interviews and the focus group was developed. The structure and the content of the question guide was based on expert opinion and a literature review [ 23 ]. The experts were a physiotherapist who has previously delivered the GLA:D programme and two researchers who have evaluated the impact and implementation of the GLA:D programme in Switzerland. The questions encompassed the three points of interest that were defined a priori: (1) Attitude towards PA and GE; (2) Barriers and facilitators affecting long-term adherence to PA and GE; and (3) Support needed to enhance long-term adherence to PA and GE. The semi-structured interview guide is shown in the Additional file 1 .

Transcription and Coding of the interviews and the focus group was conducted by the first author (FM) and advised by the two co-researchers (KN, IN). For the analysis the software of MAXQDA (Version 2020) was used. During transcription, the language was transliterated from Swiss German to German language. An inductive content analysis according to Elo and Kyngäs (2008) was performed. In the organising phase, the transcripts were open-coded and then condensed into items. In the grouping phase, the items were firstly allocated to subcategories, then to generic categories and finally to the main categories [ 24 ]. The category system is provided in the Additional file 2 .

Quantitative phase

The study sample for the survey were former GLA:D participants from Switzerland. The inclusion criteria were: (1) completion of the GLA:D programme in the past 5 to 17 months; (2) Possession of an email address; and (3) written and spoken German language skills. Recruitment was supported by the management of GLA:D Switzerland, since the study participants were selected from the GLA:D Switzerland data register. The invitation links were sent by email to all 1,140 former GLA:D participants fulfilling the inclusion criteria. A reminder was sent after two weeks.

Questionnaire

The self-administered questionnaire contained questions on: (1) Demographic and disease-related characteristics; (2) The level of PA, using the German Short-Form International Physical Activity Questionnaire (IPAQ-SF) [ 25 ], which has acceptable measurement properties [ 26 ]; (3) Frequency and duration of self-reported GE adherence; (4) Barriers and facilitators to the recommended GE performance; and (5) Support needs. The questions on barriers and facilitators were derived from the qualitative interview and focus group data (see Additional file 2 ), as well as the findings on barriers and facilitators in knee and hip OA populations in the systematic review by Kanavaki et al. [ 19 ]. This resulted in 31 barrier and 31 facilitator items. Questions on the support needed to promote long-time adherence to GE were derived from the qualitative interview and focus group data and were also integrated into the questionnaire. Prior to commencing data collection, the comprehensibility of the online survey and its duration were pilot-tested on six former or current GLA:D programme participants. The feedback of these individuals was integrated into the final version of the questionnaire. The questionnaire was shortened and the wording of the questions improved.

Five-point scales were used for the rating of the barrier and facilitator items by the survey participants. Barriers: ‘not hindering at all’, ‘little hindering’, ‘rather hindering’, ‘very hindering’, ‘not applicable’; and Facilitators: ‘not facilitating at all’, ‘little facilitating’, ’rather facilitating’, ‘very facilitating’, ‘not applicable’. The usefulness of the support needs was rated on a 4-point scale (‘not useful at all’, ‘little useful’, ’rather useful’, ’very useful’) (see Additional file 3 ). The survey software Unipark was employed for the online survey (QuestBack, https://www.unipark.com ). For purpose of this publication the questionnaire was translated into English.

Statistical analysis

Demographic data is presented as absolute and relative frequencies or as mean values with standard deviations, as appropriate. The levels of PA and self-reported GE adherence, barriers, facilitators and support needs are all expressed as frequencies. To compare the GE-adherent participants (those performing the recommended GE ≥ 2 times per week) and the GE-non-adherent participants (those performing GE < 2 times per week), barriers and facilitators were rated separately, and the data analysed by group. The group differences were compared for the frequencies of barriers and facilitators, respectively, using the Fisher’s exact test. Therefore, the answer categories were collapsed into the two groups ‘not at all/little hindering/facilitating’ and ‘rather/very hindering/facilitating. The answer category ‘not applicable’ was excluded in the statistical analysis. The statistics revealed the odds ratio (OR) with the confidence interval (CI) and the p -value. The level of significance was set to p  < 0.05. Data was exported and analysed by FM with the support of a statistician using the statistical software RStudio (Version 1.2.5019). The Tables were created with Microsoft Excel (Version 16.43).

Participants

Eight persons (four females, 50%) with a mean age of 66 (±9.8) years participated in the focus group and three persons (two females, 66%) with a mean age of 60 (± 7.6) participated in the single interviews. From the sample of 1,140 persons, 630 people started the survey and 339 (30%) completed it. Participants were mostly female (n = 227, 67%) with a mean age of 67 (±9.3) years, ranging from 29 to 89 years. Table  1 provides a detailed overview of the participants’ demographic and disease-related characteristics for the qualitative and quantitative phase.

Key findings interviews and focus group

The analysis of the individual interviews and the focus group revealed a category system with barriers, facilitators and support needs as well as more detailed generic categories and subcategories. For the barriers and facilitators four generic categories could be revealed: (1) health- related factors; (2) social factors; (3) personal factors; and (4) environmental factors. More information is provided in the Additional file 2 .

Level of PA and GE adherence

About 84% ( n  = 285) of the respondents met the PA guidelines and stated they performed 150 min per week or more of moderate intensity PA. The recommended GE on two or more days per week was performed by 53% ( n  = 178) respondents according to self-reported data (see Table  2 ).

Barriers and facilitators affecting long-term GE adherence

The respondent’s ratings in the survey of the barriers are shown in Table  3 and the facilitators in Table  4 .

The top 3 barriers included: (1) no/little self-discipline to perform GE (40%, n  = 112); (2) no/little motivation to perform GE (33%, n  = 91); and (3) no/too little integration of GE into the daily/weekly structure (32%, n  = 90).

The top 3 facilitators were: (1) GE are easy to perform (93%, n  = 300); (2) Progress and improvements (93%, n  = 303); and (3) GE are individually adapted (90%, n  = 287).

Comparisons of the ratings of barriers and facilitators between the GE-adherent and GE-non-adherent groups are shown in Tables  3 and 4 , respectively.

The group comparison indicated differences for the top 3 barrier items. The top 3 barriers for the GE-non-adherent respondents were no/little self-discipline to perform GE (54%, n  = 74), no/too little integration of GE into the daily/weekly structure (50%, n  = 69), and no/little motivation to perform GE (49%, n  = 67). In contrast, the top 3 barriers for the GE-adherent respondents were reduced general health (27%, n  = 42), pain before exercising (26%, n  = 43), and no/little self-discipline to perform GE (26%, n  = 38).

Group comparison of the barriers revealed that respondents in the GE-adherent group rated barrier items as ‘rather or very hindering ’ significantly less often for the following factors: Social factors (4 items); Personal factors (4 items); Organisational factors (4 items); Programme-related factors (2 items); and Health-related factors (1 item) (Table  3 ).

Group comparison of the facilitators revealed that both groups rated the two items progress and improvements (94%, n  = 167 vs. 91%, n  = 136) and GE are easy to perform (95%, n  = 166 vs. 91%, n  = 134) as their top 2 facilitators. The other facilitator items differed between the two groups. The adherent respondents rated the facilitators intention to perform GE (93%, n  = 165) and confidence to perform GE independently (91%, n  = 161) high, while the non-adherent respondents rated GE are individually adapted (90%, n  = 156) and enough time to perform GE (90%, n  = 157) high.

Group comparison of the facilitators revealed that respondents in the GE-adherent group rated facilitator items as ‘rather or very facilitating’ significantly less often for the following factors: Personal factors (2 items); Health-related factors (1 item); GE programme-related factors (1 item); and Organisational factors (1 item) (Table  4 ).

Support needs

Table  5 details the respondents ratings of the perceived usefulness of the support needs in promoting long-term adherence to GE with the goal of ‘twice a week GLA:D with long-term continuation’. The items were ranked based on their perceived usefulness (‘rather/’very useful’). The top 3 useful support needs were the items: (1) shortened version (max. 30 min.) of the GE home programme (75%, n  = 255); (2) monthly continuation of small GE groups with GLA:D physiotherapist supervision (65%, n  = 221); and (3) regular testing of individual progress with GLA:D physiotherapist (e.g. 2x/year) (65%, n  = 221).

Both the adherent and the non-adherent respondents rated the item shortened version (max. 30 min.) as the top useful support service. Significantly more adherent than non-adherent respondents rated the item independent GE performance with an app with GE videos (OR 1.77 (1.13–2.8); p  < 0.01) as ‘rather/very useful’.

The additional file 4 presents the results of the open question from the survey. The people were asked, what other support needs they would wish to achieve this goal ‘twice a week GE with long term continuation’.

This study aimed to explore the barriers, facilitators and support needs for long-term adherence to GE, as experienced by the respondents. This is the first study to explore former GLA:D participants’ perceptions of the barriers and facilitators affecting their long-term GE adherence. Additionally, this study aimed to investigate respondents’ level of self-reported PA and self-reported adherence to GE between five and 17 months after completion of the GLA:D programme.

Physical activity and GLA:D exercise adherence

The results showed that 84% ( n  = 285) of respondents reached the recommended level of PA and 53% ( n  = 178) reached the GE adherence goal of exercising at least twice weekly.

A survey among the general Swiss population in 2017 showed a prevalence of recommended self-reported PA of 76% [ 27 ]. Comparing these results with international literature, a Swedish study by Sturesdotter et al. showed a prevalence of recommended self-reported PA of 79% for people with knee and hip OA at 12 months after a supported self-management programme [ 28 ]. The results of the study by Pisters et al. were comparable with this study, with a prevalence of recommended self-reported PA of 87% at 15 months after a behavioural exercise and activity programme followed by booster sessions in the first year after the programme [ 29 ].

Compared to the prevalence of recommended PA (84%, n  = 285) found in this study, a substantially smaller portion of respondents (53%, n  = 178) were adherent to the GE recommendations of exercising at least twice weekly. These rates are comparable with a Danish cohort of 10’000 participants (unpublished data). Pisters et al. showed similar self-reported exercise adherence results, with a rate of 59% at 15 months after a behavioural exercise programme with booster sessions in the first year after the programme [ 29 ].

Interestingly, the relatively low GE adherence rate (53%, n  = 178) was not reflected in an overall deterioration in pain and functioning over a one-year period [ 12 ]. In contrast, the achieved results were sustained and are comparable in all countries where GLA:D programmes are offered. In our study almost 50% of the people did the GE not at all or once per week. Thus, it is still relevant to know more about barriers and facilitators for effectively supporting GE adherence, as we can’t assume that non-adherent participants can keep the results after programme participation to the same extent as adherent participants.

Barriers and facilitators affecting GE long-term adherence

The top barrier found to GE adherence was no/little self-discipline to perform GE and the top facilitator was GE are easy to perform . The group comparison showed substantial differences in the ranking of the top barriers and small variations in the ranking of the top facilitators. This reinforces the need to particularly consider the barriers to achieve long-term adherence and to develop strategies to overcome hindering factors.

In general, it is notable that barriers were perceived less hindering than facilitators were perceived as facilitating. For example, 40%, n  = 112 rated the top barrier as hindering, whereas 94% rated the top facilitator as facilitating. It can be hypothesised that, in general, the facilitators are perceived as being more meaningful and having greater participant focus compared to the barriers, or that people tend to give a socially desired response rather than an accurate one. Another general pattern can be seen in the ratings of barriers and facilitators in the group comparison. Notably, more non-adherent respondents weighted barrier items as being more hindering, whereas the two groups rated facilitator items as being similarly facilitating. It can therefore be hypothesised that respondents in the non-adherent group perceive obstacles as more hindering.

The dominant three barriers revealed in our study are no/little self-discipline to perform GE, no/little motivation to perform GE and no/little integration of GE into the daily/weekly structure . Lack of motivation seems to be a strong hindering factor regarding exercise adherence, as it was also the most prominent barrier in the study by Knoop et al. [ 30 ]. While adherent respondents considered ‘health-related factors’ to be important barriers, non-adherent respondents weighted the personal and organisational barriers higher. It is important to consider these group differences when planning interventions to enhance long-term exercise adherence after GLA:D. The barriers should be evaluated and addressed individually for each GLA:D participant, both during and after the GLA:D programme. The research by Duong et al. confirms that adherence is always influenced by multiple factors, and they differ between individuals and within an individual over time. To overcome lack of self-discipline and lack of motivation, regular supervision with a booster session or monitoring of progress could improve self-efficacy [ 31 ]. Regular exercise engagement depends on a complex interplay of physical, personal, psychological, social and environmental factors, as revealed by the systematic review by Kanavaki et al. [ 19 ].

The most highly rated facilitator items in this study are GE are easy to perform , progress and improvements , and GE individually adapted. Our finding on the item ‘ GE are individually adapted’ is supported by the review on knee OA and exercise adherence by Marks, which points out the importance of indivdualised exercise prescriptions [ 32 ]. The item ‘progress and improvements’ seems to be a strong facilitator, as in the literature review by Dobson et al. many facilitators were related to reinforcement topics like improvement and positive exercise experience [ 18 ]. As the extent of the perceived barriers and facilitators diverged significantly between the two groups, the group differences must be considered when developing strategies to enhance long-term adherence to GE. For example, GE adherence should be monitored during and after the programme, barriers and facilitators should be individually identified and addressed using behavioural change tools.

The following top 3 support needs revealed relevant and interesting options to increase long-term GE adherence: (1) shortened version (max. 30 min) of the GE home programme; (2) monthly continuation of small GE groups with a GLA:D physiotherapist supervision; and (3) regular testing of individual progress with a GLA:D physiotherapist .

The adherent and non-adherent respondents agreed on the top useful support service ‘ shortened version (max. 30 minutes) of the GE home programme’ . Thereafter, the ratings varied slightly between the groups. The adherent respondents rated ‘ independent exercising with videos’ as significantly more useful than the non-adherent respondents. This result could be explained by the findings on the barriers and facilitators in our study, which indicate that lack of intention, motivation and self-discipline, as well as the need for external pressure (e.g. appointment) are barriers to long-term GE adherence. Whilst self-efficacy is considered an important component for self-management among patients with OA to affect PA adherence positively [ 33 ], Olsson et al. point out that more on-going support might be needed to maintain self-efficacy after a self-management OA programme [ 34 ]. Therefore, it may be worthwhile to analyse the factors that strengthen individual self-efficacy, especially for non-adherent persons.

The systematic review by Cinthuja et al. showed that booster sessions appear to enhance exercise adherence in people with lower limb OA, although only up to the 12 months follow-up [ 20 ]. These review findings are consistent with other literature, which suggest that people fail to maintain long-term exercise adherence and stress the importance of the provision of support. According to the review by Marks, long-term monitoring is indicated to encourage exercise adherence [ 32 ], which is in line with the participant ratings on useful support needs in this study, such as regular testing and GE group offers. Furthermore, behaviour change techniques (BCTs) such as ‘patient- led goal setting’, ‘self- monitoring of behaviour’ and ‘social support’ demonstrated highest effectiveness ratios to promote PA adherence [ 35 ]. Duong et al. emphasise that the implementation of BCT’s, such as booster sessions should be used to improve exercise adherence, which supports the findings of this study [ 31 ]. The study by Willett et al. concluded that peoples’ perceived beliefs about their capabilities should be targeted by facilitating psychosocial support and access to resources for PA maintenance post-discharge [ 36 ]. Therefore, the focus of the suggested monthly post-GLA:D GE groups should not only be on GE performance, individual adaptation and regular testing, but also on psychosocial support. This could minimise main barriers, combatting lack of motivation and encouraging self-discipline. Participants require strategies and interventions to overcome these barriers and appropriate post-GLA:D programmes should be developed.

Strengths and limitations

The mixed method approach, which links the qualitative exploration of barriers and facilitators in a purposefully selected sample and the quantitative evaluation of identified factors among the community of GLA:D participants, is a strength of this study. It allowed the exploration of all aspects of the barriers and facilitators to long-term GE adherence.

A limitation of the study is the fact that the questionnaire was not statistically validated before use – although it was pilot tested for comprehensibility and completeness (face validity). Furthermore, our sample displayed a relatively high level of participant education. It has previously been shown that people with a lower level of education are less physically active than people with a higher level of education [ 37 ]. What may also limit the generalizability is the finding, that the sample contains mostly unemployed people who might have different barriers than employed people. In addition, the exclusion of non-German speaking participants further limits the general applicability of the study. Furthermore, the high drop-out rate was noticeable in the study. The hypothesis for the relatively high drop out rate is the length of the questionnaire, as drop outs occurred not at one special question but more in the course of the whole questionnaire”.

The self-reported measures of the level of PA and GE adherence should be interpreted with caution, due to possible overestimation through social desirability or recall bias. To reduce overestimation future research should measure PA and GE adherence with electronic monitoring like wearables or apps instead of self-reported questionnaire. The perceived level of PA may not correspond with an objectively measured level of PA [ 38 ]. Since participation in this study was voluntary, it is likely that mainly persons with a high interest in PA, GE and the importance of barriers and facilitators for GE, may be represented in the study, thus biasing the results.

Regarding the inclusion timeline the authors had to find a middle way between including a broad sample, that reflects reality, and nevertheless narrowing down the time after GLA:D completion, because of its effect on the adherence rate.

Practical and research implications

The most important barriers, facilitators and useful support needs revealed in this study should guide the development of strategies to enhance long-term GE performance after GLA:D. Regarding the barriers to long-term GE adherence, the highest positive impact should address the lack of self-discipline and motivation and the introduction of time management and behavioural change tools. The former could be achieved through enabling joyful and rewarding moments while exercising and the latter by providing advice and support for the integration of GE into the daily and weekly structure. In the GLA:D exercise group a number of behaviour change tools are already used e.g. graded tasks, feedback, providing information, peer-modelling and self-monitoring. Regarding the facilitators to long-term GE adherence, it is important to focus during and after the GLA:D programme on individually adapted exercises that are easy to perform and that help participants to prioritise their GE.

The results on support needs suggest that GE at home should take no more than 30 min and that there should be a possibility to attend monthly booster sessions in small groups with a GLA:D physiotherapist. Finally, regular testing to measure progress could considerably enhance long-term GE adherence. Further research should focus on strategies to minimise barriers and empower facilitators, as well as to evaluate their effectiveness on long-term GE adherence.

The GE adherence rates in this study show that maintaining GE after a GLA:D programme over the long-term is challenging and is influenced by many extrinsic and intrinsic factors. The results demonstrate the requirement for additional support to maintain GE adherence in the post-GLA:D phase. Participants need strategies and interventions to overcome their barriers and to enhance the facilitators. Appropriate post-GLA:D programmes to improve long-term adherence are critical. Barriers and facilitators were rated differently by the GE adherent and non-adherent respondents. Therefore, a patient-centered approach with the consideration of individual goals, abilities, barriers and facilitators and the development of individual behavioural change strategies to minimise the barriers and enhance facilitators could support an improvement in long-term GE adherence. The development of a shortened version of the GLA:D programme (maximum 30 min), the introduction of a post-GLA:D group, and a long-term monitoring with regular testing also appear crucial to maximise long-term GE adherence in former GLA:D participants.

Data availability

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

Abbreviations

GLA:D exercise (s)

Good Life with osteoArthritis Denmark

Osteo arthritis

Physical Activity

World Health Organisation

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Acknowledgements

The authors thank Jolanta Boganski for managing the recruitment of the study participants for the online survey and all the physiotherapists who supported the recruitment of the interview and focus group participants. Further thanks go to André Meichtry for his support on the statistical analysis. My heartfelt gratitude goes to all the study participants in the focus group, the interviews and the online survey for their participation and support in the realisation of this study.

The research did not receive any specific grant from funding agencies in the public, commercial, or non-profit sectors. Open access funding provided by ZHAW Zurich University of Applied Sciences

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Matile, F., Nast, I. & Niedermann, K. Facilitators, barriers and support needs to GLA:D exercise adherence – a mixed method study. BMC Sports Sci Med Rehabil 16 , 130 (2024). https://doi.org/10.1186/s13102-024-00913-6

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Challenges and coping mechanisms of parents of children with attention deficit hyperactivity disorder in Addis Ababa, Ethiopia: a qualitative study

• Wongelawit Mesfin 1 &
• Kassahun Habtamu 1  

BMC Psychology volume  12 , Article number:  354 ( 2024 ) Cite this article

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Attention deficit hyperactivity disorder (ADHD) is a neurodevelopmental disorder that has manifestations of inattention, hyperactivity, and impulsivity. It affects every facet of a child’s life, including one’s own emotions, family and school life, and social interaction. The few available studies on ADHD conducted in Ethiopia focus on teachers’ awareness and the prevalence of ADHD. None of these studies has taken into account parents of children who have ADHD. The present study, therefore, aimed to find out the challenges and coping mechanisms of parents who have children with ADHD.

A phenomenological qualitative study was conducted to explore the experiences of parents who have children with ADHD. The study was carried out in Addis Ababa, the capital city of Ethiopia. Fourteen parents and two healthcare providers were involved in the study. Participants were selected using a purposive sampling technique. In-depth interviews were conducted with parents of children with ADHD ( n  = 8) and healthcare providers ( n  = 2). One focus group discussion (FGD), consisting of six members, was also conducted with parents. A topic guide for conducting the interviews and FGD was developed. Interviews and the FGD were audio-recorded. The data were transcribed verbatim, translated into English, and then analyzed using a thematic analysis approach.

With regard to challenges of parents of children with ADHD, three themes emerged: social challenges, economic challenges and psychological challenges. Stigma is found to be the most common challenge. Other challenges included worry about the child’s future, lack of social support, strained relationships with others, impact on their job, and marital conflict. Concerning coping mechanisms, two themes emerged: Inward and outward means of coping. The inward means of coping included prayer and developing an optimistic mindset whereas the outward means were family support, healthcare providers’ guidance, and social avoidance.

Conclusions

The study found that parents of children with ADHD experience several aspects of psychological, social, and economic challenges. Support from healthcare professionals, family members, and the community at large is found to be useful for parents to cope with these challenges. Future research should focus on evaluating interventions that would help parents with ADHD cope with the challenges they experience.

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Introduction

The Diagnostic and Statistical Manual of Mental Disorders (DSM) defines attention deficit hyperactivity disorder (ADHD) as a neurodevelopmental disorder characterized by inattention, disorganization, and/or hyperactivity-impulsivity [ 1 ]. Inattention and disorganization entail inability to stay on task, seemingly not to listen, and losing materials, at levels that are inconsistent with age or developmental level [ 2 ]. Hyperactivity-impulsivity, on the other hand, refers to over-activity, fidgeting, inability to stay seated, intruding into other people’s activities, and inability to wait- symptoms that are excessive for age or developmental level [ 3 ]. These symptoms have to present prior to age 12 years, have also been present in two settings (at home and school) and they interfere with, or reduce the quality of social, academic, or occupational functioning [ 1 ]. ADHD is believed to occur in all cultures in about 5% of children and about 2.5% of adults [ 4 ]. The prevalence of ADHD worldwide is estimated to be around 6 in 100 children and adolescents and 3 in 100 adults [ 5 , 6 ].

According to the World Health Organization (WHO), there are three categories of ADHD [ 7 ]. The first is the predominately inattentive type. In this category are those children with poor attention who may forget time and again, are easily distracted, sidetracked from a task, appear not to be listening, are messy, take time to initiate doing things and lose their possessions regularly. The second category is the predominately hyperactive/impulsive type. Children with hyperactivity may often be restless, fidgety, full of energy or “always on the go”, loud, continuously chattering, unable to stay seated (in the classroom, workplace, etc.), running about or climbing in inappropriate places and unable to play or do leisure activities quietly. Children with symptoms of impulsivity may often do things without thinking, have difficulty waiting for their turn in games or a queue, interrupt people in conversation, blurt out answers before the question is finished, look intrusive and start using other people’s things without permission [ 8 ]. The third one, which is the combined type, has symptoms from both the inattentive and the hyperactive/impulsive types.

ADHD has an impact on the different aspects of a child’s life, such as poor peer relationships, and low self-esteem [ 9 ]. Children with ADHD show significant academic underachievement and educational problems [ 10 , 11 , 12 ]. For instance, they score significantly lower on reading and arithmetic tests than controls [ 13 ].

ADHD is commonly associated with elevated levels of parenting stress because the parents’ perceptions of the demands of their role as parents exceed their resources to cope with them [ 14 ]. Stress from parenting is a set of processes that starts off from efforts to adapt to calls of parenthood and results in unwanted psychological and physiological responses [ 15 ]. Apart from higher emotional impact, impaired family activities, less parental warmth, and higher parental depression and anxiety, parents of children diagnosed with ADHD reported higher stress [ 16 ]. A study has shown that the children’s problems affect the parenting stress more than parenting stress affects the children’s problems [ 17 ]. For instance, a study showed that South African parents experienced difficulties such as negative emotions, economic problems, inadequate social support, stigma, and extra care giving responsibilities [ 18 ]. Tanzanian parents experienced difficulties in handling children whose level of functioning was impaired due to abnormal and disruptive behaviour such as not being able to follow parental instructions [ 19 ]. They are also faced with psychological problems due to caring demands exacerbated by a lack of support and stigma from the community, disruptions in family functioning and social interactions among family members.

Parents need coping mechanisms to deal with the challenges they are facing in raising a child with ADHD. Folkman & Lazarus [ 20 ] explained coping as an individual’s continuous effort in thoughts and actions to manage specific external or internal demands appraised to be challenging and overwhelming to the individual. In addition, coping is considered highly contextual, in that its effectiveness is determined by the ability to change over time and across different conditions. There is no previous study on the coping mechanisms of parents who have children with ADHD in Ethiopia. Nevertheless, a study on mothers of autistic children found that religion, experience sharing, and social support are the most commonly used coping mechanisms [ 21 ]. A similar study on parents of children with intellectual disability showed that religion (praying, fasting, and attending church ceremonies), experience sharing with like parents and maintaining smooth relations with their children’s teachers are their coping mechanisms [ 22 ].

Few studies have been conducted on the prevalence, risk and protective factors and impact of ADHD in the Ethiopian context [ 23 , 24 , 25 ]. Nevertheless, to the best of our knowledge, there are no studies done on the challenges and coping mechanisms of parents of children with ADHD in the Ethiopian context. This study, therefore, aimed to explore the challenges and coping mechanisms of parents of children with ADHD.

Study design

A phenomenological qualitative study was conducted. A qualitative approach was more suitable for this study as it seeks to acquire an in-depth understanding of the experiences of parents with ADHD through exploration instead of measurement [ 26 ]. According to Draper [ 27 ], qualitative research investigates a phenomenon considering the context of people’s everyday lives and also attempts to understand and explain the world from participants’ points of view. Green & Thorogood [ 28 ] concur by stating that the focus of qualitative research is to find explanations for questions such as “what”, “how” or “why” of an occurrence.

This study intended to assess the challenges parents of children with ADHD face and the coping mechanisms they use. Data were gathered by using in-depth and key informant interviews and focus group discussion. In doing so, the study gave participants the freedom to articulate their experiences with their own words rather than choosing words from a predetermined list. The study also adopted Bronfenbrenner’s Ecological Model as its theoretical framework [ 29 ].

Study setting

The study was conducted at St. Paul Hospital, located in Addis Ababa, the capital city of Ethiopia. The present site of the hospital building was constructed in 1968/69 and could admit 400 inpatients and 300 outpatients. St. Paul’s Hospital opened a medical college during the Ethiopian Millennium celebration in 2007 after serving the nation as a hospital for six decades. Afterward, it was renamed St. Paul’s Hospital Millennium Medical Collage (SPHMMC) by the Ministry of Health of Ethiopia. At present, it has more than 2,500 clinical, academic and administrative staff. While the inpatient capacity is 700 beds, more than 2,000 outpatient and emergency clients visit the health facility every day. St. Paul Hospital has a vision of becoming a medical university with a prestigious academic and research center, and one of the most sought- after medical care providers [ 30 ].

The Child and Adolescent Psychiatry Department of the hospital launched its service around 8 years ago. It provides services to children and adolescents who have different types of psychiatric conditions such as depression, autism spectrum disorder, ADHD, intellectual disability, substance use disorder, oppositional defiant disorder, and conduct disorder. On average, around ten patients pay a visit to the department daily. Service users will have their follow-ups until age 18 years in the Department and then will get transferred to the Adult Psychiatry Department. There are two resident psychiatrists, one senior psychiatrist, two psychologists and two nurses who are providing services in the Department.

Participants

Purposive sampling was used to select participants in the study. This was carried out until saturation was reached. Parents who have children with diagnosed ADHD and healthcare providers who are providing treatment to children with ADHD participated in the study. Participants had to meet the following inclusion criteria to be included in the study: being a parent to a child with a diagnosis of ADHD, ability to communicate fluently in Amharic, and willingness to participate in the study. As for the healthcare providers, the study included the two of them who were on duty during the study. The target population of this study was parents of children who have ADHD at St. Paul Hospital and health care professionals who were providing services to these children and their parents. The nurse provided the information on whether parents had children with ADHD or not. Then, parents were asked for their oral consent to participate in the study.

There is no formula to acquire a sample size in qualitative research. Rather, most scholars agree on the concept of data saturation to reach to sample size. Englander [ 31 ] argued that sample size in qualitative research is often determined on the basis of theoretical saturation (the point in data collection when new data no longer bring additional insights to the research questions). Sandelowski [ 32 ] suggested that the assessment of the sample size’s appropriateness becomes a “matter of judgment”, depending on the milestones retained in the attention field by the researcher.

Creswell [ 33 ] recommended interviews with up to 10 people in phenomenological research so this study planned to interview two healthcare professionals and eight parents who have a child with ADHD. Regarding the focus group discussion, Johnson & Christensen [ 34 ] suggested that focus groups usually contain 6–12 persons. Krueger [ 35 ] suggested 6–9 focus group members and groups with more than 12 participants tend to limit each person’s opportunity to share insights and observations while focus groups with less than 6 participants make it difficult to sustain a discussion. One focus group discussion was conducted comprising six parents who have a child with ADHD.

Methods and procedures of data collection

In-depth and key informant interviews and focus group discussion (FGD) were used as methods of data collection. Both interviews and FGD gave the participants the autonomy to express their experiences in raising children with ADHD. In-depth interviews and FGD were conducted with parents of children with ADHD. Healthcare professionals who diagnose and provide treatment to children with ADHD at St. Paul Hospital were also interviewed. Triangulation is of vital significance in qualitative research in terms of data collection method and data source. Having different respondents for the interview and FGD enriched the information gathered. The sequence for the data collection was from individual interviews with parents to focus group discussion with parents and then to individual interviews with healthcare providers. The major reason for this sequence was that in-depth interview with parents was the primary method of data collection and it was easier to make the interview with parents iterative than the interview with healthcare providers as well as the FGD with parents. In addition, the interview with parents shaped both the FGD and the interview with healthcare providers.

We developed a topic guide for the interviews and the focus group discussion (Supplementary Material 1 ). The questions within the topic guide we used for parents focused on finding out parents’ reactions to the first diagnosis of their child, the change after diagnosis, their positive experiences, the challenges they face and their coping mechanisms. For the healthcare providers, the questions focused on finding out about parents’ reactions to the first diagnosis of their children, the challenges of parents and the support given by the healthcare providers. For each guiding question, planned probes were included.

Interviews involve a one-to-one in-depth discussion where the researcher adopts the role of an “investigator.” This implies the researcher asks questions, controls the dynamics of the discussion, or engages in dialogue with a specific individual at a time [ 36 ]. According to Nyumba [ 36 ] in a focus group discussion, researchers adopt the role of a “facilitator” or a “moderator.” In this setting, the researcher facilitates or moderates a group discussion between participants and not between the researcher and the participants. The study was conducted in a naturalistic setting of the out-patient of the Department of Child and Adolescent Psychiatry at St. Paul’s Hospital. Both the interviews and focus group discussion were conducted in Amharic and electronically recorded. This allowed the researcher to refer to the data gathered anytime and also avoid recall bias. In-depth interviews with parents lasted between 30 and 50 min, whereas the FGD took 90 min. The key informant interview with one of the healthcare providers lasted 45 min and with the other 60 min.

Data analysis

Data were transcribed verbatim and then translated into English. We followed the following four steps in analyzing the data: (a) familiarization with the data, (b) generating initial codes and searching for themes, (c) reviewing themes, and (d) naming themes [ 28 ].

In the course of getting familiar with the data, we listened to the audio recordings several times and transcribed the recordings into text format. Then meticulous reading of the transcripts was carried out with the aim of spotting keywords or phrases describing the experiences of the informants. Labeling and organizing the relevant pieces enabled the coding to be achieved which subsequently helped in identifying key themes. The formation and naming of these key themes were a result of the grouping of related themes. Then the subthemes were formed.

Ethical considerations

We confirm that the study was conducted in accordance with the Declaration of Helsinki. Ethical approval for the study was obtained from the Research Ethics Committee of the School of Psychology, Addis Ababa University, and the Ethics Committee of St. Paul’s Hospital Millennium Medical College. The study was carried out in a manner that was transparent to all the participants. All the participants in the study were well informed of the aim of the study. Only those who gave their oral informed consent to participate in the study were included. The participants were assured that the data gathered would only be used for research purpose. In addition, they were reassured that the use of the voice recording was solely for the research.

Assurance of confidentiality was attained by giving pseudonyms to participants. At the end of the interview, all participants were debriefed. Finally, the researcher offered the chance of getting the findings of the research to the participants.

The socio-demographic characteristics of the interview and FGD participants are presented in Table  1 .

The in-depth interview participants were eight in number and all were biological parents. Seven mothers and a father participated in the interview. All were married, except one (who was divorced), in terms of marital status. The age of the parents who participated in the interview ranged from 27 to 48 years. Concerning their religion, two of them were Muslims, two of them were Orthodox Christians and the rest four were Protestants. With regards to educational level, one was not able to read and write, two were seventh graders, three were tenth graders, one was eleventh grader and one had a BA degree. When it comes to occupation, five of them were stay at home mothers, one a cleaner, one tea and coffee vendor and one a pastor. Respondents of the focus group discussion were six biological parents. The group consisted of four mothers and two fathers, with age ranging from thirty to sixty. When it comes to marital status, there was one single parent, four married and one cohabiting with a partner. Four of them were orthodox Christians whereas the other two were Protestant or Muslim. Regarding their educational level, two of them had first degree, one had diploma, two of them completed 12th grade and one was a tenth grader. Concerning their occupation, the two degree holders both were teachers, one self-employed and three of them were stay-at home mothers.

Concerning the socio-demographic characteristics of health care professionals, one was a female General Practitioner and the other was a male third-year Psychiatry resident. Both were single. In terms of religion, one was Muslim and the other Protestant.

The major themes along with their sub-themes that emerged from the data are presented in Table  2 .

Parents’ reaction to their children’s diagnosis

For the question about their reaction when the healthcare provider first informed them about their children’s diagnosis, parents responded that they reacted with a range of feelings. There was no ‘right’ way to feel to come to terms with the diagnosis and move on with everyday life. The healthy thing to do was to recognize and validate these feelings. Some accepted it, some were shocked and confused and others were engulfed with different feelings. Apart from those who accepted it easily, we had observed other parents responding with sadness and teary eyes or even sobbing.

Parents’ acceptance of their children’s diagnosis is a way of melding the condition in their lives without engaging in any intrapersonal conflict. Intrapersonal conflict was a fight within oneself with one’s thoughts and values. The intrapersonal conflict for parents like these might be in the form of self-blame, guilt, blaming others, becoming mad at God, or taking the incident as a punishment from God. Easy acceptance of their children’s diagnosis was possible for some parents because of the prior information they got from different sources.

While we were living in Saudi Arabia, I had seen TV programs that enabled me to have a clue concerning children’s mental health. So accepting it was not that much of a trouble to me. (INTV, Fatuma) As a teacher, I knew the behaviour of children. I had noticed something wasn’t right when it came to the behaviour of my son. I couldn’t understand why he didn’t have the motivation and the patience to study. I searched over the internet and finally took him for an assessment. (FGD, Afework)

Shock and confusion

Hearing the unexpected news yielded two predominant emotions: shock and confusion. Shock was a reaction to a surprising and unpleasant incident while confusion was a state where one feels disoriented, cannot think clearly and is unable to make a decision. Two of the interviewed mothers had the following to say:

My daughter was on Thyroxine tablets that were prescribed to her by doctors in Saudi Arabia. Back then I was told that my daughter’s behaviour was a result of the side effect of this medication. But when we came to Ethiopia, she was diagnosed with ADHD. As I had accepted what the doctors from Saudi Arabia said about the behaviour of my daughter, finding out she had a mental health condition was shocking. The two different opinions of the doctors made me confused. Why the doctors did come up with two different diagnoses? (INTV, Sifan) I didn’t expect my daughter would be diagnosed with a mental health condition so it was shocking news for me. I raised my daughter alone and struggled to support us. God knew what I was going through and had helped my problems come to pass. So, when this happened I was confused why God allowed another problem to happen to me. I had seen no hope until my daughter started taking the medication. (INTV, Tirunesh)

Emotional ambivalence

Some of the parents reported that they experienced emotional ambivalence (a state where one has a mixture of emotions that might contradict each other). These included anxiety, hopelessness, depression, guilt, self-blame, denial, shame, self-doubt, sadness and blame. Anxiety arises from the feeling of uncertainty and fear about what the future holds for their children. Blaming others, guilt and self-blame were effects of the search for possible causes of the disorder. Parents moved down memory lane to dig out what they should have done. Anxiety, fear and insecurity could lead to denial about the incident. Feelings of shame arise when parents think about what society might say about their child’s diagnosis. Parents also might doubt themselves about their competence as a parent.

The news about the diagnosis erupted mixed emotions in other parents which included denial, anxiety, sadness, hopelessness, shame and self-blame. One mother whose son had epilepsy explained the assurance they had in prayer for the spiritual healing of their son. Not seeing any progress made her sought professional help. He was not only diagnosed with epilepsy but also with ADHD. What she had felt was anxiety, hopelessness, confusion, shame and self-blame. This was what another sobbing mother had to say:

My son had swallowed a coin and we took him to the hospital. X-ray images were taken thrice. I blame myself for not refusing when the medical practitioners did that. So I believe the exposure to the X-ray that day caused my son’s ADHD. I felt as though I’d failed so I blamed myself for that . In addition, I had shame, denial and guilt. (FGD, Mesert)

A father had also the following to share:

As our neighbors told us, my son had fallen several times when he was very little and we believe that his ADHD was a result of it. A teacher was complaining about my son’s behaviour to his mother. His mother told the teacher that he had started holy water treatment for his behaviour. The principal of the school overheard their conversation and later on warned us that he must get assessed by a professional. As the school is an international school, she also wanted a medical certificate after his assessment in order for them to support him afterwards. I had felt shame and sadness. (FGD, Workneh)

The two healthcare professionals described what the reactions of parents were when they were first told about the diagnosis of their children. The resident psychiatrist reported that most parents got confused, shocked, and exhibited denial.

The general practitioner shared her observation as:

Most of the parents did not have a clue about ADHD and often were perplexed and assumed ADHD was as a full-blown psychosis. Moreover, parents wrestled with self-blame if something had happened in the past which they might think had caused their child’s disorder. This included a fall of the child that took place during the early years, instances during their pregnancy, etc. (INTV, GP)

Parental change after diagnosis

Parents reported that they experienced a change in themselves after they knew about the diagnosis of their children. These included an increased understanding of ADHD and better care provision.

Awareness about ADHD

For some of the parents, the change after the diagnosis of the child was an increased understanding about the condition not only for themselves but also for the ones that were close to them. Two parents shared the changes that took place with them as follows:

I thought my son’s condition was associated with supernatural evil manifestation and that was the reason why we chose prayer prior to getting him professionally evaluated. Our perspective has shifted after his diagnosis. (INTV, Deraretu) The first time I heard about ADHD was in the psychiatrist’s office during my son’s assessment. When I go home, I shared the information with my wife. Later on, I told my elder sister about it as she sometimes looked after him. (INTV, Haile)

Knowing about their children’s condition has enabled some parents to become better caregiver to their children. One parent described it as:

I not only give him unique attention to his needs but also strive for his emotional well-being. I am always more watchful when relatives come to visit us so that they don’t call him “naughty” or something else. Whenever I had to go pay a visit to a relative, I wanted to take my other kids along and leave my son home. On the one hand, I feel like I am protecting him from harsh comments. On the other hand I knew this would make him feel lonely. In the end, I refrained from doing this and went by myself. (INTV, Tayitu)

Another parent added:

I came to know that physical exercise helps with concentration. I always encourage my son to do regular physical exercises. (FGD, Afework)

Positive experiences while parenting a child with ADHD

Even though their situation was unfortunate and dubious, parents gained some sort of positive experience in the upbringing of their children with ADHD. These included knowledge, advocacy, and inspiration.

For most of the parents, their knowledge of ADHD increased after the diagnosis. Moreover, they shared what they knew with the ones they believed should know about their children’s condition as described in the quotations below.

A teacher had called my son stupid which had been informed to the director. As the teachers didn’t have a clue about ADHD, I made a brief explanation about his condition to all of them. (INT, Haile) Fellow teachers used to tell me to support my son academically as if I was negligent towards this. I tutored a lot of children and enabled them to be high achievers academically. I knew my son had a good potential but the perspective of others differed about it. I shared what I knew about the condition with a heavy heart knowing it was not a one-time incident. I wish people were aware of ADHD. (FGD, Afework)

Becoming an advocate for children with ADHD was another positive experience gained for most of the parents. Parents have become advocates with the intention creating a supportive environment for their children. The quotation below supports this narration.

If I see children who have similar behaviour as my son’s, the first thing that comes to mind is his condition (ADHD). Whenever I take a taxi and observe a hyperactive child, I try to play with them and defend them if any negative comment is forwarded. (INTV, Kedija)

Another parent claimed that he not only became an advocate for children with ADHD but also for mental health in general.

During a discussion about mental health, I made sure people dropped any myths they might have about ADHD and other mental health issues. Even the ones we considered worst like schizophrenia can be managed with medication and normal life can be attained. (FGD, Workneh)

Inspiration

Some of the parents wanted to share their experiences with other similar parents and also get encouraged by other parents who have children with other neurodevelopmental disorders. A parent highlighted her positive experience in terms of knowledge of ADHD, inspiration, and advocacy as follows.

While waiting for my son’s turn at the hospital, I always engage in a conversation with other parents. If the parents have a newly diagnosed child, I tell them their journey might be challenging but it’s manageable. I told them how I managed my son’s epilepsy and ADHD. If their child has autism or another condition, it’s my turn to learn from their strength. (FGD, Mesert)

Challenges of parents of children with ADHD

The study found that parents of children with ADHD experienced psychological, social, and economic challenges. More specifically, these included worry about the future of the child, stigma, lack of social support, strained relationship with others, impact on their job, marital conflict, teachers’ lack of knowledge on ADHD, and having anxiety and depression symptoms.

Social challenges

Social challenges were those challenges originating from society and have negative consequences on the individual. Stigma was found to be one of the major social challenges for the majority of the parents. This included a negative, biased and unfair belief about ADHD. An excuse for laziness, way out of trouble, wrongly disciplined, and judgment on parents were some of the aspects of stigmata associated with ADHD.

Less social support from relatives and neighbors and a low level of knowledge of teachers take up the next level of challenges. The less social support from relatives and neighbors might be the result of stigma. Strained relationships and marital conflict are the challenges that stood out for a few parents in addition to other social challenges. Due to the stigma and social avoidance, some parents had strained relationships with members of their community. Others had conflicts with their partners regarding the diagnosis and treatment of their child’s ADHD.

A parent stated her experience as:

I face different setbacks but the one that hurts me most is my marital conflict. My husband doesn’t seem to care about my son who has ADHD. Ever since my son’s diagnosis, he isolated himself from anything connected to my son’s condition. In regards to my son’s school, the school administration informed me that my son wasn’t up to the criteria set for kids with autism and therefore had to leave the school. I took the case to the Ministry of Education. So I carry the entire burden by myself. (FGD, Muluemebet)

Another mother added:

I have a similar story. My mother-in-law believes that my son’s condition is brought by evil spirits and the remedy is in the hands of a shaman. As she has inflicted this idea in my husband’s head, a fight arises whenever my son’s condition is raised. One day my son was late to come home. But when he returned, his father locked the door and started beating him up. He opened the door to let him out on the arrival of the police. Even though I had explained to my sisters about my son’s condition, they suggested I should look for a detention facility for children like him. Due to my son’s condition, I no longer work and am a housewife. I sometimes get judged about my son by individuals from my church’s congregation. (FGD, Mesert)

Economic challenges

Economic challenges were those challenges that put economic turmoil on an individual due to mental health conditions. Quitting job to take care of their children with ADHD was the challenge to many of the parents. As taking care of children with ADHD demands a lot of patience, parents especially mothers fear other caregivers might lose their temper and hurt their children, and, therefore, quit their job to look after these children. Few parents reported the stress they had because of their socioeconomic status and others terminated their children’s follow-up due to financial strain. Overall, parents of children with ADHD described the impact on jobs and expenses associated with the child’s illness.

Spending extra time on school-related activities, such as helping the child to do homework and assignments was found to be difficult and frustrating not only for the child but also for the parent as well. A parent stated that her life is always nothing but stress. This parent carries the burden of being a single mother, divorced, financially constrained, and a daughter with a mental health condition who always worries about the actions of her landlord and stigma.

My husband abandoned me the minute our daughter had her first seizure. She no longer has seizures but I have never heard from him. Because of her behaviour, I got to relocate and met new landlords frequently. As I am the sole breadwinner, the financial constraint is enormous. With the earnings I get from selling tea and coffee, meeting my needs of living expenses coupled with my daughter’s follow-up is so nerve-racking. Moreover not knowing her condition, people always judge me for not raising a well-behaved child. (INTV, Tirunesh)

Psychological challenges

Psychological challenges as a result of being a parent of children with ADHD which included stress, anxiety, sadness, loneliness, helplessness, hopelessness, and depression were frequently aired in the interviews and FGD. Most of the parents worried about their child’s future. Parents worried a lot about who would have the patience to take care of these children when they were no longer alive. A mother claimed she had been depressed for some time until recently. This mother felt helplessness and had no happiness in life.

Here is what two mothers had to say about the psychological challenges of parents of children with ADHD.

I was in a queue waiting for a taxi with my daughter. She wanted to play around but I refused to let her go because I feared a car might hit her. She knelt, started crying and would not stand up. One guy interfered and asked me why she was crying. He was so suspicious that I abducted someone else’s child. An ugly scene was created which later involved the police. I explained her condition to them and the case was solved. I was humiliated. Another issue that I face constantly is with my daughter’s handwriting. Her teachers said that her handwriting is below her peers. Her teachers not only complain about her behaviour but also her handwriting. This deeply made me sad and angry. (FGD, Sifan) I constantly worry a lot about my son. I always beg my son not to go out of our compound but boredom seems the rationale for him to do so. Some boys have got sexually molested near where we live. My prior warnings and advice I gave him didn’t seem to work as I had to tell him time and time again. (FGD, Mesert)

The first author witnessed one of the parents who participated in the interview throwing the appointment card on the nurse’s desk and shouting at her which later ended up in crying. The interviewer calmed her down and she said she was so stressed out. According to her, nurses in the other department mistreated her and people were judging her. She later apologized to the nurse for the way she behaved.

When it comes to the challenges that parents of children with ADHD faced, the resident explained that they faced stigma, hopelessness, and depression.

The general practitioner added:

ADHD affects every aspect of the lives of these parents. The significant challenge that parents face is at the school where these children go to. Unless they have comorbid conditions, children with ADHD go to regular schools and are bombarded by the harsh criticisms and judgments of their teachers who lack knowledge about ADHD. In addition, managing the child’s behaviour daily, stress, concern about the future of the child, impact on their job and marital conflict were other challenges that parents faced. Upon discovering heredity as being one possible etiology of ADHD, most couples argued over who passed it on to the child and mothers ended up taking the blame mostly. Some couples don’t reach an agreement on whether to continue with the follow-up or not. This mostly resulted in the discontinuation of the treatment. Some fathers also expressed feelings of doubt about the mother’s competence as a parent. Sometimes the diagnosis of the child involves not only the parents but also in-laws. (INTV, GP)

Some parents whose children had become teens explained another psychological challenge as:

My son used to take his medication properly. The doctors had increased the dosage of his medication. I was the one who gave him the medication every night. By the time he became a teen, he started refusing to take his medication and going for follow-ups. My wife and I couldn’t force him to continue and we are waiting on him to start again. The journey takes a different lain when children with ADHD become adolescents. (FGD, Afework) My son doesn’t want to go to the hospital now. The different mental conditions of the children he saw at the hospital tormented him emotionally. By the time he became a teen, he claimed he wasn’t as mentally ill as the others and did not see the point of going to the hospital. As the medication had made a huge difference for him, I did not want him to stop taking it. So I usually go to the hospital without him for the prescription. I usually inform the doctors about his status and any change in his behaviour if any and they adjust the dosage accordingly. I wanted to have more kids but changed my mind after his diagnosis. (INTV, Menen)

Coping mechanisms of parents of children with ADHD

Parents reported different types of coping mechanisms they use to deal with the challenges they face when raising children with ADHD. Parents used a combination of different coping mechanisms which could be broadly grouped into two: inward means and outward means.

Inward means

The inward means were the mechanisms that the parents perform to come up with a positive outlook. These included prayer and the state of being an optimist. Prayer decreased stress, gave a sense of relief, improved self-esteem, and increased spirituality. Due to challenges like isolation and stigma, prayer was a way to connect to their Creator where parents feel their worries and fears are heard without judgment and validation for what they go through. Being optimist during difficult times helped with handling stress and boosted resilience.

Prayer was practiced as the first coping mechanism by almost all parents. Being optimistic was another coping mechanism for other parents. Below are what three parents had to say about their use of inward coping mechanisms:

I observed my daughter grasping something faster than her siblings and knew she had potential. So I believe that Allah has created her for a bigger purpose in life. I pray and lean on Him to help her be what He wants her to be. (FGD, Sifan) With a lot of challenges that are going on in my life, prayer is the one thing that calms me down. As my elder sisters are living within the same compound, we have daily prayer. I pray about my son a lot. I believe God has a bigger purpose in my son’s life. (FGD, Mesert) I don’t know what I would do without prayer. Being a single mom with a mentally ill child, facing financial constrain, and living in a hypercritical society is so exhausting. When I pray to God for my provision, He miraculously makes it available. (INTV, Tirunesh) Even though I am faced with different challenges, I am trying to see the bright side of life. Whenever I take my child for a checkup, I get a chance to observe other mothers who have children with autism or other disorders. My challenges mean little when compared with theirs. This makes me grateful and hopeful. (FGD, Sifan)

Outward means

The outward means referred to coping mechanisms that parents get from their environment. These coping mechanisms included family support, healthcare providers’ guidance, and social avoidance. Every appointment gave a chance to the parents to get little information. Few but very close individuals knew about their child’s condition and give support to these parents. Others use avoiding social gatherings and interactions as a coping mechanism. In fear of the stigma, these parents had decided to meet up with only those who knew their child’s condition. Some even did not have friends that they can talk to.

Some parents reported that guidance from healthcare providers was one of the most useful coping mechanisms. Healthcare providers’ guidance in combination with other coping mechanisms was used by many parents. Some parents also used family support as a coping mechanism.

I haven’t told anyone about my son’s condition except my sister who is supportive of me. I don’t allow my son to go out and play with kids from the neighborhood for fear of being called names and getting bullied. I had observed a few kids who exhibited similar behaviour as my son and I believed their parents kept their conditions undisclosed. I therefore did the same thing and kept it a secret. My son had a seizure in the beginning and people had compassion for such illness not for his ADHD. Due to this, I prefer my son’s seizure over his ADHD. I wish people would stop being judgmental towards any illness. (INTV, Tayitu)

A mother expressed how the assistance she got from the health care providers became one of her coping mechanisms as

In the beginning, my husband and I were so much focused on prayer as a solution to our child’s problem. But after a while, the continuous aid from the healthcare providers became one of our coping means. (INTV, Deraretu)

A mother used social avoidance as a coping mechanism and expressed it as

I take him [the child with ADHD] anywhere I go like grocery shopping and other places he shouldn’t supposed to go like funerals. I have avoided meeting up with my friends. My parents’ place is a safe haven for my son and me. I am longing to see a support group with whom I can talk freely without being judged. (INTV, Fatuma)

The study shows that the reaction of parents during and after the diagnosis of their children varies from simple acceptance to a mixture of different emotions. Some of the parents noticed deviant behaviour in their children and got their children assessed due to their doubt and later on accepted their child’s diagnosis easily. Due to prior knowledge they have had on ADHD, these parents accepted the diagnosis easily as it gave them relief regarding their doubt. This finding is similar to other studies done on ASD diagnosis in a way that parental suspicion of a child’s developmental problems leads to getting an early diagnosis and coping more with the diagnosis than those not suspicious [ 37 , 38 ]. A study by Dosreis et al. [ 39 ] had a similar finding on parents of children with ADHD that acceptance was achieved by 38% of parents as their main concern was trying to find an explanation for the difficult behaviour of their children.

For parents whose children have been diagnosed with mental illness, resolution is a fundamental part of the process en route to acceptance [ 40 , 41 ]. According to Pianta and Marvin [ 42 ], resolution can be taken as accepting the diagnosis and integrating it into one’s life while refusing to accept self-blame. Milshtein et al. [ 40 ] argued resolution is a perception of complying and acknowledging the diagnosis and its inference. For parents of children with ASD, acceptance and normalization are very important to give the best possible life to their children [ 21 ].

Upon finding out about their child’s diagnosis, the majority of participants flaunted their reactions with a variety of emotions which include hopelessness, confusion, shame, guilt, self-blame, confusion, anxiety and denial. This is consistent with the findings of other previous studies done on the commonly experienced emotions about a child’s mental health diagnosis which include helplessness, devastation, sadness, loneliness, guilt, anxiety, and grief [ 43 , 44 ]. Parents of children with mental illness go through a feeling of loneliness, misunderstanding, stigma and rejection, grief and self-blame, cynicism, unhappiness, guilt, and anxiety [ 44 ]. In congruence with other studies [ 40 , 41 ], the findings of this study showed no relationship between the reactions of parents to diagnosis and parental demography. Fathers and mothers of children with ADHD reacted similarly.

The positive experiences parents gain while raising children with ADHD include knowledge, advocacy, and inspiration. Consistent with our study, Ustilaite and Cvetkova [ 45 ] revealed that parents of children with disabilities gained a range of positive experiences like inner parental growth, family relationships, finding new spiritual and material resources and feelings such as love, emotional bond with the child, and child as a source of joy and happiness.

Parents who are involved in this study experience different types of psychological, social, and economic challenges while raising children with ADHD. From these, parents’ concern for the future well-being of children and stigma from the community stood out. Social challenges include stigma, limited social interaction, marital conflict, strained relationships, teachers’ lack of knowledge of ADHD, and low social support. According to Sirey and colleagues [ 46 ], stigma is a socially formulated observable fact that encompasses stereotyping, labeling, segregation, loss of status, and nepotism which are allowed to take place in social circumstances by individuals with power. A “culture of suspicion”, about mental health treatment particularly if it involves a child, has been created by the stigmatizing convictions towards people with mental health conditions [ 47 ].

The finding that some parents have challenges in their social interaction and have strained relationships is similar to a previous study [ 48 ] which found that children’s ADHD has negatively influenced parents’ social lives and forced them to have frictions in their relationships. Other similar studies have revealed that parents had feelings of isolation from their friends and families, due to other adults being intolerant of their children’s behaviour [ 18 , 49 ]. In regards to marital conflict, this study has similar findings to other studies [ 18 , 50 ] which found that it is a result of unlike opinions among parents on the diagnosis and treatment of their child. Other studies revealed that it might be caused by troubles with a child’s behavior [ 51 ]. In a study conducted by Wymbs et al. [ 52 ] parents who had a child with ADHD were not only more likely to divorce but also had a shorter latency to divorce than parents of children without ADHD.

Ambikile and Outwater [ 53 ] found that the challenges of Tanzanian parents who have children with mental disorders including ADHD were insufficient children’s social services, stigma, childcare strain, lack of public awareness of mental illness, absence of social support, and troubles with social life. As per the different studies conducted in Ethiopia [ 54 , 55 ], a large number of teachers lack knowledge on ADHD. This negatively impacts the parents and that is what the present study identified as one of the challenges for the parents.

A study carried out in Ethiopia on parents of children with ASD revealed that parents have a social burden [ 56 ]. Other similar studies [ 57 , 58 ] found that the challenges of parents of children with ASD were marital conflict, time-consuming, lack of social support, stigma, the severity of the child’s behaviour, child’s inability to understand feelings and needs, inadequate service (school and treatment), and lack of self-care. In another study, separation from a partner, family/societal reactions, and social isolation are the challenges of parents who have children with intellectual disability [ 59 ].

The study found that parents of children with ADHD experience severe economic challenges and this is consistent with findings of previous studies. For instance, Fridman et al. [ 60 ] found that parents of children with ADHD are likely to quit their jobs to take care of their children. Kvist et al. [ 61 ] also concluded that having a child with ADHD will decrease the labor supply of parents. This is likely to put parents to severe economic strain. Studies conducted in Ethiopia [ 62 , 63 ] found that parents of children with neurodevelopmental disorders experience such economic challenges as financial difficulty, lack of education and training, lack of financial support and employment opportunities.

Parents of children with ADHD also experience several psychological challenges. The current study revealed that what constantly worries parents is that who, in a highly stigmatized society, would have the patience to take care of their children in their absence. Cheung & Theule [ 64 ] and Durukan et al. [ 65 ] found a higher prevalence of depression and anxiety than parents of children without ADHD. This was similar to the experiences of some of the respondents in the present study. The present finding is in line with the study by Deault [ 66 ] that parents of children with ADHD have stress on which the children might play a role. In addition, Minichil et al. [ 67 ] found out that parents of children with mental health conditions can go through depression due to low social support which is also prevailing in this study. In another study, parents of children with ADHD reported that they experience greater levels of parenting stress than parents of children with autism [ 68 ] or with serious conditions such as Epilepsy [ 69 ]. Another study revealed that the distress is related to isolation, stigma, and frustration due to the lack of support [80].

Studies conducted in Ethiopia [ 65 , 66 , 67 ] found that the psychological challenges of parents of children with ASD were stress, concern about the child’s future, and psychological burden. According to Negash [ 59 ] uncertainty about the future, emotional disturbance, and spiritual crises were the challenges of parents who have children with intellectual disability. Tanzanian parents who have children with mental disorders including ADHD experience stress, sadness, bitterness and concern about the present as well as the future life of their children [ 53 ]. Three-fourths of parents in Nepal who have children with intellectual disability suffer from severe stress to clinically significant stress caused by their children’s disorder [ 70 ].

The present study adopted the Bronfenbrenner’s Ecological Model as its theoretical model. This theory describes the existence of multifaceted levels of the environment with an effect on the development of a child [ 29 ]. The theory demonstrates the development of a child within a system, the interaction between the systems, and the influences they have on each other and the child. According to the views of the theory, a complex system of relationships affected by multiple levels of the surrounding environment is where a child develops. When we compare the ecological model with all the challenges parents of children with ADHD are going through, here are some of our observations. At the microsystem level, it was found that the low level of knowledge the teachers have about ADHD has an impact on the parents. The reaction of some church members about the behaviour of a child with ADHD and the humiliation it has on the parents exhibit the bi-directional influence of the microsystems. At the exosystem, what was observed were the interactions of the parents with their neighbors, with friends of the parents, with their in-laws and relatives, and the way our mass media wrongly portrays mental health. At the macrosystem level, it was observed how these parents were affected by the stigma that exists about mental health. At the chronosystem level, the experience of some parents going through divorce, separation and an incident where a mother was forced to relocate from place to place due to her child’s condition was encountered. In addition, as explained by the ecological theory, the child will lack the means to explore other parts of the environment if the interaction in the immediate microsystem breaks down. The absence of acceptance in the child/parent (child/other significant adult) relations will make the children look for attention in an improper place. These inadequacies appear during adolescence as anti-social behaviour, absence of directing oneself and self-control [ 29 ]. This was somehow partially evident with the two parents who have teens with ADHD.

For the majority of the parents, adaptive strategies like religion, optimism, guidance from professionals and family support are used as coping mechanisms. Almost all of the parents use prayer as a coping strategy. Parents reported that they feel less stressed and believe that better days will come after praying. Healthcare providers’ guidance is also another coping mechanism that most parents use to deal with their challenges. The support from family members also played a role as a coping strategy. Research has revealed that religion is used to going through unpleasant experiences and trying to make meaning out of them and finally coming up with an optimistic outlook [ 71 ]. A Tanzanian study found that support from professionals, spiritual help from traditional healers and religious leaders, and assistance in child care from other family members were the coping mechanisms used by parents who have children with mental disorders including ADHD [ 53 ]. For parents of children with ASD, trying to make meaning out of the situation, support groups, being optimistic and religiosity were used as coping mechanisms [ 56 ]. Another similar study found that religion, social support, increased knowledge of autism, acceptance and cherishing little progress are the coping mechanisms for parents who have children with ASD [ 58 ].

Parents in the present study use optimism as a coping mechanism and this is consistent with the finding of a study by Oelofsen and Richardson [ 72 ] which revealed that parents of children with ADHD used an optimistic belief of having control over the situation, high sense of coherence and support as coping strategies. Parents from Hong Kong use acceptance, problem-centered coping methods and situational-based acts as their coping strategies [ 73 ]. A Nepalese study revealed that coping strategies used by Nepalese parents who have children with intellectual disability were acceptance, societal support, positive reinterpretation and growth, planning, inhibition of competing actions and use of emotional social support [ 70 ]. A similar study in Ethiopia found that spiritual beliefs, hope (better future) and relationships with other similar parents were the coping mechanisms of parents of children with intellectual disability [ 59 ].

Other parents use maladaptive coping strategies like social avoidance as a coping mechanism for the challenges they face. Avoidance coping strategies take place when stressful circumstances, experiences, or complicated opinions and feelings are averted to use as a coping strategy. This study is in line with one study that revealed that mothers who have children with ADHD use avoidance as one of their coping strategies [ 74 ].

Strengths and limitations

We substantiated the views of parents who have children with ADHD by interviewing healthcare providers who are providing treatment to children with ADHD. We also used different methods of data collection (i.e. in-depth interviews and FGD) for triangulation purpose. Nevertheless, the findings of this study need to be interpreted taking several limitations into account. This is a qualitative study and generalizability of the findings of the study to other populations and study setting would not be possible. The participants were recruited from one government hospital and those who are attending private health centers might have different experiences. All respondents are from Addis Ababa and their experiences might be different from those living in the rural areas where the stigma is believed to be higher. In addition, the majority of the participants of the study are mothers and the experiences reported in the study may not represent fathers who have children with ADHD.

Parents of children with ADHD experience various psychological, social and economic challenges. Support from healthcare professionals, family members and society at large plays a role for parents to cope with these challenges. Knowledge about ADHD prior to the diagnosis of the child has helped parents to easily accept the condition. Easy acceptance of the diagnosis reduces the psychological challenges of the parents. By creating awareness to society, most of the challenges of parents who have children with ADHD can be minimized.

The concerned government body has to consider the financial constraints parents are facing and facilitate further medication subsidies not only for children with ADHD but also for children with other neurodevelopmental disorders. This will encourage parents who intend to discontinue their children’s follow-up because of financial constraints to reconsider their intention. Healthcare facilities diagnosing and treating children with ADHD need to see the desperate need to facilitate for the parents to set up a support group where they would be able to exchange their experiences with like parents which in turn serve as a coping mechanism.

Policymakers need to observe the lack of teachers’ awareness about ADHD and the skill to handle children with ADHD as one of the challenges for parents of children with ADHD and work to design strategy to provide training that would equip teachers with the necessary knowledge in dealing with students with ADHD. As per the narratives of some of the parents, they are in constant brawls with their children who just became adolescents over their refusal to take medication. This can be an area for further study. Another focus for future research can be evaluating interventions that would help parents with ADHD cope with the challenges they experience. Quantitative studies that would estimate the burden and associated factors of parents who have children with ADHD are also warranted.

Data availability

The data used for this analysis will become available through the first author at any time from now up on reasonable request.

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Attention Deficit Hyperactivity Disorder

American Psychological Association

Autism Spectrum Disorder

Diagnostic and Statistical Manual of Mental Disorders

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We are enormously thankful to the parents as well as the healthcare professionals who participated in this study.

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W.M. and K.H. conceived and designed the study. W.M. did recruitment of the participants and led the data collection process. W.M. did the data analysis in close consultation with K.H. W.M. produced the first draft of the manuscript. K.H. supported in the interpretation of data and significantly contributed in the writing of the manuscript. Both authors approved the final manuscript to be submitted for publication.

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The state of AI in early 2024: Gen AI adoption spikes and starts to generate value

If 2023 was the year the world discovered generative AI (gen AI) , 2024 is the year organizations truly began using—and deriving business value from—this new technology. In the latest McKinsey Global Survey  on AI, 65 percent of respondents report that their organizations are regularly using gen AI, nearly double the percentage from our previous survey just ten months ago. Respondents’ expectations for gen AI’s impact remain as high as they were last year , with three-quarters predicting that gen AI will lead to significant or disruptive change in their industries in the years ahead.

About the authors

This article is a collaborative effort by Alex Singla , Alexander Sukharevsky , Lareina Yee , and Michael Chui , with Bryce Hall , representing views from QuantumBlack, AI by McKinsey, and McKinsey Digital.

Organizations are already seeing material benefits from gen AI use, reporting both cost decreases and revenue jumps in the business units deploying the technology. The survey also provides insights into the kinds of risks presented by gen AI—most notably, inaccuracy—as well as the emerging practices of top performers to mitigate those challenges and capture value.

AI adoption surges

Interest in generative AI has also brightened the spotlight on a broader set of AI capabilities. For the past six years, AI adoption by respondents’ organizations has hovered at about 50 percent. This year, the survey finds that adoption has jumped to 72 percent (Exhibit 1). And the interest is truly global in scope. Our 2023 survey found that AI adoption did not reach 66 percent in any region; however, this year more than two-thirds of respondents in nearly every region say their organizations are using AI. 1 Organizations based in Central and South America are the exception, with 58 percent of respondents working for organizations based in Central and South America reporting AI adoption. Looking by industry, the biggest increase in adoption can be found in professional services. 2 Includes respondents working for organizations focused on human resources, legal services, management consulting, market research, R&D, tax preparation, and training.

Also, responses suggest that companies are now using AI in more parts of the business. Half of respondents say their organizations have adopted AI in two or more business functions, up from less than a third of respondents in 2023 (Exhibit 2).

Gen AI adoption is most common in the functions where it can create the most value

Most respondents now report that their organizations—and they as individuals—are using gen AI. Sixty-five percent of respondents say their organizations are regularly using gen AI in at least one business function, up from one-third last year. The average organization using gen AI is doing so in two functions, most often in marketing and sales and in product and service development—two functions in which previous research  determined that gen AI adoption could generate the most value 3 “ The economic potential of generative AI: The next productivity frontier ,” McKinsey, June 14, 2023. —as well as in IT (Exhibit 3). The biggest increase from 2023 is found in marketing and sales, where reported adoption has more than doubled. Yet across functions, only two use cases, both within marketing and sales, are reported by 15 percent or more of respondents.

Gen AI also is weaving its way into respondents’ personal lives. Compared with 2023, respondents are much more likely to be using gen AI at work and even more likely to be using gen AI both at work and in their personal lives (Exhibit 4). The survey finds upticks in gen AI use across all regions, with the largest increases in Asia–Pacific and Greater China. Respondents at the highest seniority levels, meanwhile, show larger jumps in the use of gen Al tools for work and outside of work compared with their midlevel-management peers. Looking at specific industries, respondents working in energy and materials and in professional services report the largest increase in gen AI use.

Investments in gen AI and analytical AI are beginning to create value

The latest survey also shows how different industries are budgeting for gen AI. Responses suggest that, in many industries, organizations are about equally as likely to be investing more than 5 percent of their digital budgets in gen AI as they are in nongenerative, analytical-AI solutions (Exhibit 5). Yet in most industries, larger shares of respondents report that their organizations spend more than 20 percent on analytical AI than on gen AI. Looking ahead, most respondents—67 percent—expect their organizations to invest more in AI over the next three years.

Where are those investments paying off? For the first time, our latest survey explored the value created by gen AI use by business function. The function in which the largest share of respondents report seeing cost decreases is human resources. Respondents most commonly report meaningful revenue increases (of more than 5 percent) in supply chain and inventory management (Exhibit 6). For analytical AI, respondents most often report seeing cost benefits in service operations—in line with what we found last year —as well as meaningful revenue increases from AI use in marketing and sales.

Inaccuracy: The most recognized and experienced risk of gen AI use

As businesses begin to see the benefits of gen AI, they’re also recognizing the diverse risks associated with the technology. These can range from data management risks such as data privacy, bias, or intellectual property (IP) infringement to model management risks, which tend to focus on inaccurate output or lack of explainability. A third big risk category is security and incorrect use.

Respondents to the latest survey are more likely than they were last year to say their organizations consider inaccuracy and IP infringement to be relevant to their use of gen AI, and about half continue to view cybersecurity as a risk (Exhibit 7).

Conversely, respondents are less likely than they were last year to say their organizations consider workforce and labor displacement to be relevant risks and are not increasing efforts to mitigate them.

In fact, inaccuracy— which can affect use cases across the gen AI value chain , ranging from customer journeys and summarization to coding and creative content—is the only risk that respondents are significantly more likely than last year to say their organizations are actively working to mitigate.

Some organizations have already experienced negative consequences from the use of gen AI, with 44 percent of respondents saying their organizations have experienced at least one consequence (Exhibit 8). Respondents most often report inaccuracy as a risk that has affected their organizations, followed by cybersecurity and explainability.

Our previous research has found that there are several elements of governance that can help in scaling gen AI use responsibly, yet few respondents report having these risk-related practices in place. 4 “ Implementing generative AI with speed and safety ,” McKinsey Quarterly , March 13, 2024. For example, just 18 percent say their organizations have an enterprise-wide council or board with the authority to make decisions involving responsible AI governance, and only one-third say gen AI risk awareness and risk mitigation controls are required skill sets for technical talent.

Bringing gen AI capabilities to bear

The latest survey also sought to understand how, and how quickly, organizations are deploying these new gen AI tools. We have found three archetypes for implementing gen AI solutions : takers use off-the-shelf, publicly available solutions; shapers customize those tools with proprietary data and systems; and makers develop their own foundation models from scratch. 5 “ Technology’s generational moment with generative AI: A CIO and CTO guide ,” McKinsey, July 11, 2023. Across most industries, the survey results suggest that organizations are finding off-the-shelf offerings applicable to their business needs—though many are pursuing opportunities to customize models or even develop their own (Exhibit 9). About half of reported gen AI uses within respondents’ business functions are utilizing off-the-shelf, publicly available models or tools, with little or no customization. Respondents in energy and materials, technology, and media and telecommunications are more likely to report significant customization or tuning of publicly available models or developing their own proprietary models to address specific business needs.

Respondents most often report that their organizations required one to four months from the start of a project to put gen AI into production, though the time it takes varies by business function (Exhibit 10). It also depends upon the approach for acquiring those capabilities. Not surprisingly, reported uses of highly customized or proprietary models are 1.5 times more likely than off-the-shelf, publicly available models to take five months or more to implement.

Gen AI high performers are excelling despite facing challenges

Gen AI is a new technology, and organizations are still early in the journey of pursuing its opportunities and scaling it across functions. So it’s little surprise that only a small subset of respondents (46 out of 876) report that a meaningful share of their organizations’ EBIT can be attributed to their deployment of gen AI. Still, these gen AI leaders are worth examining closely. These, after all, are the early movers, who already attribute more than 10 percent of their organizations’ EBIT to their use of gen AI. Forty-two percent of these high performers say more than 20 percent of their EBIT is attributable to their use of nongenerative, analytical AI, and they span industries and regions—though most are at organizations with less than $1 billion in annual revenue. The AI-related practices at these organizations can offer guidance to those looking to create value from gen AI adoption at their own organizations.

To start, gen AI high performers are using gen AI in more business functions—an average of three functions, while others average two. They, like other organizations, are most likely to use gen AI in marketing and sales and product or service development, but they’re much more likely than others to use gen AI solutions in risk, legal, and compliance; in strategy and corporate finance; and in supply chain and inventory management. They’re more than three times as likely as others to be using gen AI in activities ranging from processing of accounting documents and risk assessment to R&D testing and pricing and promotions. While, overall, about half of reported gen AI applications within business functions are utilizing publicly available models or tools, gen AI high performers are less likely to use those off-the-shelf options than to either implement significantly customized versions of those tools or to develop their own proprietary foundation models.

What else are these high performers doing differently? For one thing, they are paying more attention to gen-AI-related risks. Perhaps because they are further along on their journeys, they are more likely than others to say their organizations have experienced every negative consequence from gen AI we asked about, from cybersecurity and personal privacy to explainability and IP infringement. Given that, they are more likely than others to report that their organizations consider those risks, as well as regulatory compliance, environmental impacts, and political stability, to be relevant to their gen AI use, and they say they take steps to mitigate more risks than others do.

Gen AI high performers are also much more likely to say their organizations follow a set of risk-related best practices (Exhibit 11). For example, they are nearly twice as likely as others to involve the legal function and embed risk reviews early on in the development of gen AI solutions—that is, to “ shift left .” They’re also much more likely than others to employ a wide range of other best practices, from strategy-related practices to those related to scaling.

In addition to experiencing the risks of gen AI adoption, high performers have encountered other challenges that can serve as warnings to others (Exhibit 12). Seventy percent say they have experienced difficulties with data, including defining processes for data governance, developing the ability to quickly integrate data into AI models, and an insufficient amount of training data, highlighting the essential role that data play in capturing value. High performers are also more likely than others to report experiencing challenges with their operating models, such as implementing agile ways of working and effective sprint performance management.

About the research

The online survey was in the field from February 22 to March 5, 2024, and garnered responses from 1,363 participants representing the full range of regions, industries, company sizes, functional specialties, and tenures. Of those respondents, 981 said their organizations had adopted AI in at least one business function, and 878 said their organizations were regularly using gen AI in at least one function. To adjust for differences in response rates, the data are weighted by the contribution of each respondent’s nation to global GDP.

Alex Singla and Alexander Sukharevsky  are global coleaders of QuantumBlack, AI by McKinsey, and senior partners in McKinsey’s Chicago and London offices, respectively; Lareina Yee  is a senior partner in the Bay Area office, where Michael Chui , a McKinsey Global Institute partner, is a partner; and Bryce Hall  is an associate partner in the Washington, DC, office.

They wish to thank Kaitlin Noe, Larry Kanter, Mallika Jhamb, and Shinjini Srivastava for their contributions to this work.

This article was edited by Heather Hanselman, a senior editor in McKinsey’s Atlanta office.

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