Novel insights into patients' life-worlds: the value of qualitative research

Abstract

In The Lancet Psychiatry, Lucy Livingston and colleagues1Livingston LA Shah P Happé F Compensatory strategies below the behavioural surface in autism: a qualitative study.Lancet Psychiatry. 2019; (published online July 23.)http://dx.doi.org/10.1016/S2215-0366(19)30224-XPubMed Scopus (78) Google Scholar amply demonstrate the rich potential of qualitative methods to provide insight into the life-worlds of patients and analysis of hitherto un(der)explored facets of mental and physical health conditions. The publication of their paper reflects increasing acknowledgment of the value of qualitative methods in medical research. At the same time as some medical publications have questioned the wider value and impact of qualitative research,2Greenhalgh T Annandale E Ashcroft R et al.An open letter to The BMJ editors on qualitative research.BMJ. 2016; 352i563Crossref PubMed Scopus (206) Google Scholar health and social policy3Swindells M Putting patients at the heart of all we do.https://www.england.nhs.uk/blog/putting-patients-at-the-heart-of-all-we-do/Date: April 7, 2017Date accessed: July 1, 2019Google Scholar increasingly demand engagement with the voices and perspectives of patients—something only truly understood through qualitative inquiry. Through Livingston and colleagues' research, we gain a moving insight into the experiences of compensatory strategies for people on the autism spectrum, those with an autism spectrum diagnosis as well as those who might be on the spectrum, but do not have a diagnosis. Their study demonstrates the way in which successful use of deep compensatory strategies can obscure diagnosis and hinder access to reasonable adjustments in contexts such as the workplace. Qualitative research not only gives entry to patient perspectives, but also offers a rich range of methods to explore anything from health policy to doctor–patient interactions. Good clinical practice, and indeed policy, depends on the sorts of knowledge generated through small, in-depth qualitative studies, as well as information generated through large-scale clinical trials. For example, patients and doctors can have quite different understandings of medical conditions, and these differences can lead to “ruptures in communication”4Edgar A Kitzinger C Kitzinger J Interpreting chronic disorders of consciousness: medical science and family experience.J Eval Clin Pract. 2015; 21: 374-379Crossref PubMed Scopus (17) Google Scholar and thus impoverished medical care, patient and family dissatisfaction, and even distress. Livingston and colleagues' study1Livingston LA Shah P Happé F Compensatory strategies below the behavioural surface in autism: a qualitative study.Lancet Psychiatry. 2019; (published online July 23.)http://dx.doi.org/10.1016/S2215-0366(19)30224-XPubMed Scopus (78) Google Scholar is a compelling example of how a small-scale qualitative study can produce insights that can inform diagnostic criteria, clinical assessment, and patient care. Across the multidisciplinary field of health research, qualitative methods, and indeed thematic analysis,5Braun V Clarke V Using thematic analysis in psychology.Qual Res Psychol. 2006; 3: 77-101Crossref Scopus (64574) Google Scholar, 6Braun V Clarke V Reflecting on reflexive thematic analysis.Qual Res Sport Exerc Health. 2019; 11: 589-597Crossref Scopus (1803) Google Scholar, 7Braun V Clarke V Terry G Thematic analysis.in: Rohleder P Lyons AC Qualitative research in clinical and health psychology. Palgrave Macmillan, Basingstoke2014: 95-113Google Scholar are not novel, but well established, with a long and rich history. The theories and methodological writings that inform the practice are, however, sometimes at odds with the paradigms, values, and norms that dominate in medical research. As such, we are delighted to see The Lancet Psychiatry recognising the value of a thematic analysis approach. This clash of values can produce some tensions and publishing expectations at odds with what is seen as good practice by qualitative methodologists, recognising there are many and diverse views on this.8Malterud K Qualitative research: standards, challenges, and guidelines.Lancet. 2001; 358: 483-488Summary Full Text Full Text PDF PubMed Scopus (2647) Google Scholar In Livingston and colleagues' Article, we see this tension in the discussion of generalisability—not usually a demonstration of the value of qualitative research,9Smith B Generalizability in qualitative research: misunderstandings, opportunities and recommendations for the sport and exercise sciences.Qual Res Sport Exerc Health. 2018; 10: 137-149Crossref Scopus (426) Google Scholar the reporting of frequency counts for themes—something that we and others do not advocate, because frequency does not simply correspond to importance,5Braun V Clarke V Using thematic analysis in psychology.Qual Res Psychol. 2006; 3: 77-101Crossref Scopus (64574) Google Scholar and concerns about the representativeness of the sample.8Malterud K Qualitative research: standards, challenges, and guidelines.Lancet. 2001; 358: 483-488Summary Full Text Full Text PDF PubMed Scopus (2647) Google Scholar Furthermore, what is missing in their paper, for us, is a clear statement about the philosophical assumptions and values on which their research design and practice rest. Qualitative research needs to clearly identify the foundations for the claims that are made.8Malterud K Qualitative research: standards, challenges, and guidelines.Lancet. 2001; 358: 483-488Summary Full Text Full Text PDF PubMed Scopus (2647) Google Scholar This concern is not trivial or minor; there are many different orientations to qualitative research and very different bases for claiming evidence in qualitative research10Grant BM Giddings LS Making sense of methodologies: a paradigm framework for the novice researcher.Contemp Nurse. 2002; 13: 10-28Crossref PubMed Scopus (72) Google Scholar—patient experience and voices is just one approach. For the quality of the evidence presented to be meaningfully assessed, researchers need to be clear about why they can claim what they claim. Medical journals generally have reporting structures firmly informed by the standards of quantitative positivist empiricism, and these structures do not work well for qualitative projects. For example, the third person, passive voice removes the active voice of the researcher, something much qualitative research values (as do Lancet journals). Strict word limits mean that participant data, which are vital for validity in qualitative research, are often extracted from the analytical narrative and relegated to tables, as we see in this Article. Such formatting style not only sidelines participant voices, it precludes the detailed analysis of particular extracts of data, which is common to much qualitative inquiry, and allows analysis to go beyond a fairly direct reporting of participant perspectives. Journals that wish to embrace qualitative research need to develop more flexibility in how such research can be reported. For medical researchers who might worry about the question of quality, there have been decades of lively discussion over quality criteria for qualitative research, which ranges from complex theoretical debates to the development of various appraisal tools. More recently, where a sizeable body of qualitative research has been done in a particular area, methods such as thematic synthesis have been developed to provide practitioners and policy makers with the evaluative equivalent of a systemic review.11Malterud K Qualitative metasynthesis: a research method for medicine and health sciences. Routledge, London2019Crossref Google Scholar But first the primary qualitative studies need to find publishing outlets in high-quality medical and health journals. We have published extensively around thematic analysis and qualitative research. Books include: Successful Qualitative Research (SAGE, 2013; co-authored) and Collecting Qualitative Data (Cambridge, 2017; coedited with Debra Gray). Compensatory strategies below the behavioural surface in autism: a qualitative studyIncreased awareness and measurement of compensatory strategy use in autism should guide future diagnostic guidelines, towards improved diagnostic accuracy and support for people with autism spectrum disorder whose cognitive difficulties are not immediately evident in observable behaviour. Full-Text PDF Open AccessSeeing the unseen realities of autismAre you 100% authentically yourself, in every context, without thinking about how to change your behaviour to facilitate relationships with other people? The answer is probably “no”. In The Lancet Psychiatry, Lucy Livingston and colleagues1 used a qualitative thematic approach to explore various aspects of social–cognitive compensation, including strategies to support social interaction, moderating factors that affect compensation use and success, and associated positive (and negative) outcomes in adults with and without autism spectrum disorder. Full-Text PDF Open AccessDeeper understandingGood medical practice exists at the intersection of general observation with individual experience. Even in the era of high-tech medicine, this remains the case. There is not, nor will be, any biomedical test that can determine the confluence of personal history and current circumstances that determines a person's unique state of being. Robert Burton, author of the influential 17th-century medical text The Anatomy of Melancholy, recognised the importance of the individual perspective: “that diet which is most propitious to one, is often pernicious to another, such is the variety of palates, humours, and temperatures”. Full-Text PDF

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