A specific method for qualitative medical research: the IPSE (Inductive Process to analyze the Structure of lived Experience) approach

Background This paper reports the construction and use of a specific method for qualitative medical research: The Inductive Process to Analyze the Structure of lived Experience (IPSE), an inductive and phenomenological approach designed to gain the closest access possible to the patients’ experience and to produce concrete recommendations for improving care. This paper describes this innovative method. Methods IPSE has five steps: 1) set up a research group, 2) ensure the originality of the research, 3) organize recruitment and sampling intended to optimize exemplarity, 4) collect data that enable entry into the subjects’ experience, and 5) analyze the data. This final stage is composed of one individual descriptive phase, followed by two group phases: i) structure the experience, and ii) translate the findings into concrete proposals that make a difference in care. Results This innovative method has provided original findings that have opened up new avenues of research and have important practical implications, including (1) the development of patient-reported outcomes, (2) clinical recommendations concerning assessment and treatment, (3) innovative ways to improve communication between patients and doctors, and (4) new insights for medical pedagogy. Conclusions IPSE is a qualitative method specifically developed for clinical medical research to reach concrete proposals, easily combined with quantitative research within a mixed-method study design and then directly integrated within evidence-based medicine.

[1]  E. Husserl The idea of phenomenology , 1980 .

[2]  L. Verneuil,et al.  Crossing the perspectives of patients, families, and physicians on cancer treatment: A qualitative study , 2016, Oncotarget.

[3]  Morgan C. Benton The End of Average: How to Succeed in a World That Values Sameness , 2016 .

[4]  David F. Tolin,et al.  OR integration: what it is--and what it isn't. , 2007, Health devices.

[5]  T. Medsger,et al.  The value of the Health Assessment Questionnaire and special patient-generated scales to demonstrate change in systemic sclerosis patients over time. , 1997, Arthritis and rheumatism.

[6]  Sharon Kaasalainen,et al.  Managing multiple chronic conditions in the community: a Canadian qualitative study of the experiences of older adults, family caregivers and healthcare providers , 2017, BMC Geriatrics.

[7]  B. Thombs,et al.  Scleroderma patient perspectives on social support from close social relationships , 2020, Disability and rehabilitation.

[8]  Hude Quan,et al.  How to practice person‐centred care: A conceptual framework , 2017, Health expectations : an international journal of public participation in health care and health policy.

[9]  I. Dey Grounding grounded theory : guidelines for qualitative inquiry , 1999 .

[10]  K. Park,et al.  Physicians' Experience of Communication with Nurses related to Patient Safety: A Phenomenological Study Using the Colaizzi Method. , 2018, Asian nursing research.

[11]  G. Joachim,et al.  Life with a rare chronic disease: the scleroderma experience. , 2003, Journal of advanced nursing.

[12]  E. Husserl,et al.  The Crisis of European Sciences and Transcendental Phenomenology: An Introduction to Phenomenological Philosophy , 1936 .

[13]  P. Ruszniewski,et al.  Perspectives of patients and physicians about neuroendocrine tumors. A qualitative study , 2018, Oncotarget.

[14]  J. Haythornthwaite,et al.  Assessing body image in patients with systemic sclerosis (scleroderma): validation of the adapted Satisfaction with Appearance Scale. , 2007, Body image.

[15]  M. Speranza,et al.  Living from day to day - qualitative study on borderline personality disorder in adolescence. , 2013, Journal of the Canadian Academy of Child and Adolescent Psychiatry = Journal de l'Academie canadienne de psychiatrie de l'enfant et de l'adolescent.

[16]  M. Garrouste-Orgeas,et al.  Phenomenologic analysis of healthcare worker perceptions of intensive care unit diaries , 2013, Critical Care.

[17]  L. Isham,et al.  The complexities and contradictions in participatory research with vulnerable children and young people: A qualitative systematic review. , 2018, Social science & medicine.

[18]  Lea Tufford,et al.  Bracketing in Qualitative Research , 2012 .

[19]  Sue Ziebland,et al.  Analysing qualitative data , 2000, BMJ : British Medical Journal.

[20]  O. Sibony,et al.  Using and Reporting the Delphi Method for Selecting Healthcare Quality Indicators: A Systematic Review , 2011, PloS one.

[21]  L. Chularojanamontri,et al.  Dermatology life quality index in Thai patients with systemic sclerosis: a cross-sectional study. , 2011, Indian journal of dermatology, venereology and leprology.

[22]  Janice M. Morse,et al.  Qualitative Health Research: Creating a New Discipline , 2012 .

[23]  J. F. Caron-Flinterman,et al.  Patient–expert partnerships in research: how to stimulate inclusion of patient perspectives , 2011, Health expectations : an international journal of public participation in health care and health policy.

[24]  S. Thorne Interpretive Description: Qualitative Research for Applied Practice , 2008 .

[25]  Hilde van der Togt,et al.  Publisher's Note , 2003, J. Netw. Comput. Appl..

[26]  I. Gasquet,et al.  The Adolescent Depression Rating Scale ( ADRS ) : a validation study , 2007 .

[27]  L. Mouthon,et al.  Patients’ views and needs about systemic sclerosis and its management: a qualitative interview study , 2017, BMC Musculoskeletal Disorders.

[28]  Anne W. Riley,et al.  Pediatric patient-reported outcome instruments for research to support medical product labeling: report of the ISPOR PRO good research practices for the assessment of children and adolescents task force. , 2013, Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research.

[29]  L. Verneuil,et al.  Patients’ quality of life during active cancer treatment: a qualitative study , 2018, BMC Cancer.

[30]  Scott Turow The Burden of Proof , 1990 .

[31]  K. Charmaz,et al.  Teaching Theory Construction With Initial Grounded Theory Tools , 2015, Qualitative health research.

[32]  C. Moustakas Phenomenological Research Methods , 1994 .

[33]  P. F. Colaizzi Psychological research as the phenomenologist views it , 1978 .

[34]  Debbie Kralik,et al.  Reflexivity: A Practical Guide for Researchers in Health and Social Sciences , 2005 .

[35]  R. Digiuseppe,et al.  Developing the therapeutic alliance in child—adolescent psychotherapy , 1996 .

[36]  C. Pope,et al.  Qualitative Research: Reaching the parts other methods cannot reach: an introduction to qualitative methods in health and health services research , 1995 .

[37]  A. Steinberg,et al.  The role of NZB-NZW F1 thymus in experimental tolerance and auto-immunity. , 1970, Arthritis and rheumatism.

[38]  L. Kohn,et al.  Les méthodes de recherches qualitatives dans la recherche en soins de santé : apports et croyances , 2014 .

[39]  M. Hennink,et al.  What Influences Saturation? Estimating Sample Sizes in Focus Group Research , 2019, Qualitative health research.

[40]  M. Moro,et al.  First Parent-Child Meetings in International Adoptions: A Qualitative Study , 2013, PloS one.

[41]  J. Poole,et al.  Reliability and validity of the Arthritis Hand Function Test in adults with systemic sclerosis (scleroderma). , 2000, Arthritis care and research : the official journal of the Arthritis Health Professions Association.

[42]  R. Boudreau,et al.  Reliability and validity of the delta finger-to-palm (FTP), a new measure of finger range of motion in systemic sclerosis. , 2010, Clinical and experimental rheumatology.

[43]  R. Fopp Epistemology and Metaphysics for Qualitative Research , 2017 .

[44]  J. Bottorff,et al.  Further Than the Eye Can See? Photo Elicitation and Research With Men , 2007, Qualitative health research.

[45]  N. Britten Qualitative Research: Qualitative interviews in medical research , 1995 .

[46]  D. Zahavi Applied phenomenology: why it is safe to ignore the epoché , 2019, Continental Philosophy Review.

[47]  P. Gérardin,et al.  The Experience of Psychiatric Care of Adolescents with Anxiety-based School Refusal and of their Parents: A Qualitative Study. , 2018, Journal of the Canadian Academy of Child and Adolescent Psychiatry = Journal de l'Academie canadienne de psychiatrie de l'enfant et de l'adolescent.

[48]  M. Revel,et al.  Assessing disability and quality of life in systemic sclerosis: construct validities of the Cochin Hand Function Scale, Health Assessment Questionnaire (HAQ), Systemic Sclerosis HAQ, and Medical Outcomes Study 36-Item Short Form Health Survey. , 2007, Arthritis and rheumatism.

[49]  Amedeo Giorgi,et al.  The Descriptive Phenomenological Psychological Method , 2012 .

[50]  M. Moro,et al.  A qualitative study of the role of food in family relationships: An insight into the families of Brazilian obese adolescents using photo elicitation , 2016, Appetite.

[51]  J. Sibeoni,et al.  Photo-elicitation with adolescents in qualitative research: an example of its use in exploring family interactions in adolescent psychiatry , 2017, Child and Adolescent Psychiatry and Mental Health.

[52]  Drew McDermott,et al.  A critique of pure reason 1 , 1987, The Philosophy of Artificial Intelligence.

[53]  A. Ejova,et al.  Support group programme for siblings of children with special needs: predictors of improved emotional and behavioural functioning , 2016, Disability and rehabilitation.

[54]  I. Holloway,et al.  Ethical Issues in Qualitative Nursing Research , 1995, Nursing ethics.

[55]  D. Zahavi Getting It Quite Wrong: Van Manen and Smith on Phenomenology , 2018, Qualitative health research.

[56]  B. Thombs,et al.  Development and validation of the brief‐satisfaction with appearance scale for systemic sclerosis , 2010, Arthritis care & research.

[57]  B. Thombs,et al.  The Experience of Emotional Distress Among Women With Scleroderma , 2012, Qualitative health research.

[58]  A. Strauss,et al.  The Discovery of Grounded Theory , 1967 .

[59]  K. Nielsen,et al.  Collaboration and patient safety at an emergency department - a qualitative case study. , 2018, Journal of health organization and management.

[60]  T. Mapp Understanding phenomenology: the lived experience , 2008 .

[61]  J. Sibeoni,et al.  Psychiatric care of children with autism spectrum disorder – What do their siblings think about it? A qualitative study , 2019, Autism : the international journal of research and practice.

[62]  F. Guillemin,et al.  French Adaptation and Validation of the Helping Alliance Questionnaires for Child, Parents, and Therapist , 2006, Canadian journal of psychiatry. Revue canadienne de psychiatrie.

[63]  O. Wiklund,et al.  Understanding the Patient Perception of Statin Experience: A Qualitative Study , 2019, Advances in Therapy.

[64]  Lawrence R. Ness,et al.  Are We There Yet - Data Saturation in Qualitative Research (TQR Published).pdf , 2015 .

[65]  M. Eklund,et al.  Hand Mobility in Scleroderma (HAMIS) test: the reliability of a novel hand function test. , 2000, Arthritis care and research : the official journal of the Arthritis Health Professions Association.

[66]  F. Cinar,et al.  Living with scleroderma: patients’ perspectives, a phenomenological study , 2012, Rheumatology International.

[67]  A. DiCenso,et al.  The use of triangulation in qualitative research. , 2014, Oncology nursing forum.

[68]  P. Viens,et al.  Discordance between physicians' estimations and breast cancer patients' self-assessment of side-effects of chemotherapy: an issue for quality of care. , 1997, British Journal of Cancer.

[69]  M. Manen Phenomenology of Practice , 2007, Phenomenology & Practice.

[70]  H. Glaesmer,et al.  [Qualitative methods in psychiatric research]. , 2011, Neuropsychiatrie : Klinik, Diagnostik, Therapie und Rehabilitation : Organ der Gesellschaft Osterreichischer Nervenarzte und Psychiater.

[71]  B. Thombs,et al.  Exploring Sources of Emotional Distress among People Living with Scleroderma: A Focus Group Study , 2016, PloS one.

[72]  A. Booth Harnessing Energies, Resolving Tensions: Acknowledging a Dual Heritage for Qualitative Evidence Synthesis , 2018, Qualitative health research.

[73]  L. H. Shu,et al.  Considering Confirmation Bias in Design and Design Research , 2013, J. Integr. Des. Process. Sci..

[74]  M. Suarez‐Almazor,et al.  Disease and symptom burden in systemic sclerosis: a patient perspective. , 2007, The Journal of rheumatology.

[75]  M. Kerr,et al.  Reflections on qualitative data analysis training for PPI partners and its implementation into practice , 2019, Research Involvement and Engagement.

[76]  H. Pain A Literature Review to Evaluate the Choice and Use of Visual Methods , 2012 .

[77]  Elizabeth Molsen,et al.  Content validity--establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO Good Research Practices Task Force report: part 2--assessing respondent understanding. , 2011, Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research.

[78]  T. Parmenter,et al.  Remaining open to quantitative, qualitative and mixed-method designs : an unscientific compromise, or good research practice? , 2008 .

[79]  S. Ziebland,et al.  Analysing qualitative data , 2000, BMJ : British Medical Journal.

[80]  L. Verneuil,et al.  Patients' perspectives on acromegaly diagnostic delay: a qualitative study. , 2019, European journal of endocrinology.

[81]  N. Denzin,et al.  Introduction: The Discipline and Practice of Qualitative Research. , 2005 .

[82]  Douglas A. Harper,et al.  Talking about pictures: A case for photo elicitation , 2002 .

[83]  D. Wild,et al.  Assessing and demonstrating data saturation in qualitative inquiry supporting patient-reported outcomes research , 2010, Expert review of pharmacoeconomics & outcomes research.

[84]  W H Isbister,et al.  Qualitative research in health care , 2000, BMJ : British Medical Journal.

[85]  M. Patton Qualitative research & evaluation methods , 2002 .

[86]  N. Hoffart Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory , 2000 .

[87]  Jonathan A. Smith,et al.  Interpretative Phenomenological Analysis: Theory, Method and Research , 2009, QMiP Bulletin.

[88]  Derek Freeman,et al.  Margaret Mead and Samoa: The Making and Unmaking of an Anthropological Myth , 1983 .

[89]  J. Creswell,et al.  Determining Validity in Qualitative Inquiry , 2000 .

[90]  P. Gérardin,et al.  Obstacles and facilitators of therapeutic alliance among adolescents with anorexia nervosa, their parents and their psychiatrists: A qualitative study , 2020, Clinical child psychology and psychiatry.

[91]  Karen Harker,et al.  Is Qualitative Research Second Class Science? A Quantitative Longitudinal Examination of Qualitative Research in Medical Journals , 2011, PloS one.

[92]  D. Sackett,et al.  Evidence based medicine: what it is and what it isn't , 1996, BMJ.

[93]  M. Bayliss,et al.  PRO development: rigorous qualitative research as the crucial foundation , 2010, Quality of Life Research.

[94]  Gaetano Rocco,et al.  Symptomatic toxicities experienced during anticancer treatment: agreement between patient and physician reporting in three randomized trials. , 2015, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[95]  T. May,et al.  Qualitative Interviewing: Asking, Listening and Intepreting , 2002 .

[96]  H. Starks,et al.  Choose Your Method: A Comparison of Phenomenology, Discourse Analysis, and Grounded Theory , 2007, Qualitative health research.

[97]  Robert D Truog,et al.  Patients and doctors--evolution of a relationship. , 2012, The New England journal of medicine.

[98]  S. A. Jacob,et al.  A meta-synthesis on parenting a child with autism , 2016, Neuropsychiatric disease and treatment.

[99]  Paul Bloom,et al.  The Curse of Knowledge in Reasoning About False Beliefs , 2007, Psychological science.

[100]  Edgar Morin,et al.  La méthode. 3 : La connaissance de la connaissance : Anthropologie de la connaissance , 1992 .

[101]  B. Falissard,et al.  Qualitative Approach to Attempted Suicide by Adolescents and Young Adults: The (Neglected) Role of Revenge , 2014, PloS one.

[102]  M. Kris,et al.  Patient versus clinician symptom reporting using the National Cancer Institute Common Terminology Criteria for Adverse Events: results of a questionnaire-based study. , 2006, The Lancet. Oncology.

[103]  S. Thorne,et al.  PRO-based follow-up as a means of self-management support – an interpretive description of the patient perspective , 2018, Journal of Patient-Reported Outcomes.

[104]  G. Gard,et al.  Concepts of functioning and health important to people with systemic sclerosis: a qualitative study in four European countries , 2011, Annals of the rheumatic diseases.

[105]  U. S. Department of Health and Human Services FDA Cen Research,et al.  Guidance for industry: patient-reported outcome measures: use in medical product development to support labeling claims: draft guidance , 2006, Health and quality of life outcomes.

[106]  J Savage,et al.  Ethnography and health care , 2000, BMJ : British Medical Journal.

[107]  M. Moro,et al.  Cultural Identity and Internationally Adopted Children: Qualitative Approach to Parental Representations , 2015, PloS one.

[108]  Marilys Guillemin,et al.  Questions of process in participant-generated visual methodologies , 2010 .

[109]  N. Leidy,et al.  Content validity--establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report: part 1--eliciting concepts for a new PRO instrument. , 2011, Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research.

[110]  P. Sainsbury,et al.  Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. , 2007, International journal for quality in health care : journal of the International Society for Quality in Health Care.

[111]  N. Denzin,et al.  The discipline and practice of qualitative research [Introduction]. Denzin & Y. S. Lincoln (Eds.), The handbook of qualitative research (2nd ed. , 2000 .

[112]  B. Falissard,et al.  Qualitative research using photo-elicitation to explore the role of food in family relationships among obese adolescents , 2012, Appetite.

[113]  Jeffrey P. Aguinaldo,et al.  Qualitative Analysis in Gay Men's Health Research: Comparing Thematic, Critical Discourse, and Conversation Analysis , 2012, Journal of homosexuality.

[114]  J. Morse The Significance of Saturation , 1995 .

[115]  Scott Reeves,et al.  An introduction to reading and appraising qualitative research , 2008, BMJ : British Medical Journal.