The experience of a program combining two complementary therapies for women with breast cancer: An IPSE qualitative study.

INTRODUCTION: The use of complementary therapies within oncology is a clinical issue, and their evaluation a methodological challenge. This paper reports the findings of a qualitative study exploring the lived experience of a French program of complementary therapies combining structured physical activity and MBSR among women with breast cancer. METHODS: This French exploratory qualitative study followed the five stages of the Inductive Process to analyze the Structure of lived Experience (IPSE) approach. Data was collected from February to April 2021 through semi structured interviews. Participants, purposively selected until data saturation. Inclusion criteria were: being an adult woman with breast cancer whatever the stage who had completed their treatment and were part of the program of complementary therapies. RESULTS: 29 participants were included. Data analysis produced a structure of experience based on two central axes: 1) the experience these women hoped for, with two principal expectations, that is to take care of their bodies and themselves, and to become actors in their own care; and 2) an experience of discovery, first of themselves and also in their relationship with the exterior, whether with others, or in society, and in the relationships with health-care providers. CONCLUSIONS: Our results from this French study reinforce the data described in other western countries about the needs of women receiving care in oncology departments for breast cancer: they need to be informed of the existence of supportive care in cancer by the health-care professionals themselves, to be listened to, and to receive support care. A systematic work of reflexivity about this redundancy in our results and in the qualitative literature, led us to question what impeded the exploration of more complex aspects of the experience of this women-the inherently emotional and anxiety-inducing experience of cancer, especially anxiety about its recurrence and of death-and to suggest new research perspectives to overcome these methodological and theoretical obstacles.

Perspectives of French adolescents with ADHD and child and adolescent psychiatrists regarding methylphenidate use.

Many studies have demonstrated the short-term efficacy and tolerability of methylphenidate treatment adolescents with attention deficit hyperactivity disorder (ADHD). Qualitative literature on this matter focused on school outcomes, long-term side effects, family conflicts, personality changes and stigmatization. Yet, no qualitative study has crossed the perspectives of child and adolescent psychiatrists (CAPs) prescribing methylphenidate and adolescents with ADHD. This French qualitative study followed the five stages IPSE-Inductive Process to analyze the Structure of lived Experience-approach. Fifteen adolescents with ADHD and 11 CAPs were interviewed. Data collection by purposive sampling continued until data saturation was reached. Data analysis, based on a descriptive and structuring procedure to determine the structure of lived experience characterized by the central axes of experience, produced two axes: (1) The process of methylphenidate prescription, highlighting how this prescription was motivated from the exterior, experienced as passive by the adolescents and required commitment from the CAPs; and (2) the perceived effects of methylphenidate treatment, in three domains: at school, in relationships and in the sense of self. Findings raised both the issues of the epistemic position and social representation of the adolescents about ADHD and methylphenidate within this specific French context, and the self-awareness and perception of the adolescents with ADHD. We conclude that these two issues need to be regularly addressed by the CAPs prescribing methylphenidate to avoid epistemic injustice and prevent the harmful effects of stigmatization.

Early-treatment stage for adolescents with depression and their parents: An IPSE qualitative study.

The period at the start of treatment of adolescents with depression is both crucial and complex. Adolescents' and parents' perspectives on that early-treatment stage are important but have not yet been explored. The present study explores the lived experience of the early-treatment stage among adolescents with major depressive disorder and their parents and aims to cross their perspectives. This French qualitative multicentre study followed the five stages IPSE approach. Semi-structured interviews with adolescents with depression and with their parents were conducted. Data collection by purposive sampling continued until we reached theoretical sufficiency. Forty-seven participants-20 adolescents, 27 parents-were included. Data analysis produced a structure of lived experience based on two axes: (1) what leads to care: what is shown, what is seen, describing a dynamic process of showing and seeing around the start of treatment and (2) the start of treatment: knowing and sharing everyone's explanations. Results suggest some early therapeutic alliance facilitators, that is, first to be able to see the depressive manifestations and directly address the issue of depression based on what is shown and seen, second to give the opportunity to both adolescents and parents to share their views and explanations about the adolescent's distress, and finally to explicitly name this distress depression to first agree on the term to use.

Disclosing Child Sexual Abuse to a Health Professional: A Metasynthesis.

Objective: Sexual abuse is a major public health problem. Its disclosure to a health professional could help to reduce its impact on survivors' lives. The objective of this metasynthesis, combining a systematic review and an analysis of the qualitative studies, was to explore the qualitative literature concerning the experience of a survivor disclosing sexual violence experienced in childhood to a health professional, from the perspective of both. Methods and Data Sources: We used four databases and two journals (Medline, PsycINFO, EMBASE, and SSCI, and the Journal of Sexual Abuse and Child Abuse and Neglect) to identify studies concerning this disclosure of sexual abuse to healthcare professionals from the point of view of the survivors and the health professionals. After assessing the methodological quality of the articles with the "Critical Appraisal Skills Program (CASP)," we conducted a thematic analysis of the data extracted during the review. Results: This review includes 20 articles, covering the data of 612 participants: 291 who were adults at the time of the study but abused in childhood, 152 minors, 14 parents of adolescents, and 155 healthcare professionals. Two themes emerged from the analysis: (1) the disclosure as experienced by the professionals, and (2) the disclosure as experienced by the survivors. Conclusion: Our results show that survivors had a diachronic approach to the experience of disclosure. They suggest a change over time in how survivors experience disclosure: relief and release were seen only among the adult participants, at a distance from - long after - the disclosure. This study made it possible to identify new perspectives for research in the field of child psychiatry and to formulate concrete clinical proposals, in particular, by applying the principle of patient experts to involve now-adult survivors in training and increase the awareness of the healthcare professionals concerned.

The sensory experiences of autistic people: A metasynthesis.

LAY ABSTRACT: Sensory atypicalities are very common among autistic people and are integrated in several theories and explanatory models of autism. Qualitative studies have explored these singular sensory experiences from the perspectives of autistic people themselves. This article gathers all these qualitative studies and provides original findings regarding the everyday sensory experience of autistic people, that is, around four dimensions - physical, emotional, relational and social - experienced holistically, as inseparable, and not hierarchically or in terms of cause and effect. Adopting this holistic view could improve the adaptation of the sensory environment in health care facilities and the training of professionals around this specific issue.

Clinical practice during the COVID-19 pandemic: a qualitative study among child and adolescent psychiatrists across the world.

BACKGROUND: The COVID-19 pandemic has directly impacted the field of child and adolescent psychiatry, affecting all aspects of the lives of children and their families and increasing their risk of distress and mental health issues, especially among children with preexisting psychiatric disorders. Child and adolescent psychiatrists (CAPs) across the world have had to adapt their practice, due to lockdown and social distancing measures. This study aimed to explore how CAPs experienced their clinical practice in these singular conditions. METHODS: This exploratory international qualitative study used the Inductive Process to analyse the Structure of lived Experience (IPSE) approach, which is a five-stage inductive process used to explore the lived experience of participants in depth and to analyze their structure of lived experience. This study took place from March through July 2020 through individual in-depth video interviews. The sample size was determined according to the principles of theoretical sufficiency. RESULTS: 39 CAPs from 26 countries participated (age range 32-70 years; 23 women). Data analysis produced a structure of lived experience comprising three central axes of experience: (1) lost in space, lost in time, describing CAPs' experience of disorganization of their clinical practice in the dimensions of lived time and lived space, (2) the body-of CAPs and patients-underlining their disconcerting experience of both sensory aspects and the non-embodied encounter during clinical practice, and (3) unpleasant emotions, with angst and loneliness the two main feelings coloring their clinical practice experience. CONCLUSIONS: This analysis of the structure of lived experience of CAPs went beyond the sole context of the pandemic and revealed key aspects of what usually organizes CAP clinical practice. It identified two blind spots or conceptual voids within the child and adolescent psychiatry field: first, the intrinsic therapeutic function of a CAP clinical practice and, second, the important diagnostic and therapeutic function of the embodied encounter during CAP consultations. Beyond the context of COVID-19, further research should investigate these aspects to better define what a CAP does in practice and to increase both attractiveness and recruitment in this specialty.

When primary care providers and smokers meet: a systematic review and metasynthesis.

Primary Care Providers (PCPs) often deal with patients on daily clinical practice without knowing anything about their smoking status and willingness to quit. The aim of this metasynthesis is to explore the PCPs and patients who are smokers perspectives regarding the issue of smoking cessation within primary care settings. It relies on the model of meta-ethnography and follows thematic synthesis procedures. Twenty-two studies are included, reporting on the view of 580 participants. Three main themes emerge: (i) What lacks, (ii) Some expectations but no request, and (iii) How to address the issue and induce patients' motivation. Our results reveal a global feeling of a lack of legitimacy among PCPs when it comes to addressing the issue of tobacco and smoking cessation with their patients, even though they have developed creative strategies based on what is at the core of their practice, that is proximity, continuity, long-term and trustworthy relationship.

Medical Students' Perspectives on Empathy: A Systematic Review and Metasynthesis.

PURPOSE: Some evidence indicates that physician empathy declines during medical training, which has made it the subject of much research. Qualitative studies are relevant in this context, focusing as they do on how students themselves conceive and understand empathy during medical school. The aim of this study was to explore medical students' perspectives on empathy by conducting a metasynthesis, including a systematic review of the literature and analysis of included studies. METHOD: The authors systematically searched 4 databases through June 17, 2019, for qualitative studies reporting medical students' perspectives on empathy in medical school. They assessed article quality using the Critical Appraisal Skills Program, and they applied thematic analysis to identify key themes and synthesize them. RESULTS: The authors included 35 articles from 18 countries in their analysis. Four main themes emerged: (1) Defining empathy, with a lack of understanding of the concept; (2) Teaching empathy, with a focus on the hidden curriculum and clinical supervisors; (3) Willingness to be an empathetic doctor, with ambivalence expressed by some study participants; and (4) Evolution of empathy during medical school, specifically its decline. CONCLUSIONS: Medical students are beset by theoretical confusion regarding the concept of empathy, and they express doubts about its utility and relevance. Instruction should focus on simpler concepts such as listening, and schools should leverage clinical supervisors' strong influence on students' empathy. Prioritizing certain types of knowledge (clinical facts) during medical education has a globally negative effect on medical students' empathy.

The Lived Experience of First-Episode Psychosis: A Systematic Review and Metasynthesis of Qualitative Studies.

Both research and care have focused on first episodes of psychosis (FEPs) as a way to address the issue of early stages of schizophrenia and to reduce the duration of untreated psychosis. The objective of this study was to explore specifically the lived experience of FEP from the point of view of patients and their families by applying a metasynthetic approach, including a systematic review of the literature and analyses of qualitative studies on the subject. This metasynthesis follows thematic synthesis procedures. Four databases were systematically searched for qualitative studies reporting FEP from the patient or family's perspective. Article quality was assessed with the Critical Appraisal Skills Program. Thematic analysis was used to identify key themes and synthesize them. Thirty-eight articles were included, covering data from 554 participants (378 patients and 176 relatives). Three themes emerged from the analyses: (1) When and how does a FEP start? (2) What are its negative and positive aspects? (3) How do patients and families recount FEPs? Our results found important discrepancies between the experiences of patients and those of their families, especially regarding positive aspects. In light of the confusion reported by patients and notable in our results, we also discuss the gap between the name, FEP, and the lived experience of patients and family members in order to explore its practical implications.

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.

The Lived Experience of Work-Related Issues Among Oncology Nurses: A Metasynthesis.

BACKGROUND: Many qualitative studies have focused on the experience of nurses specialized in oncology and the ways they describe and understand that experience. OBJECTIVE: We aimed to perform a metasynthesis, a systematic review, and an analysis of qualitative studies focused on the experiences and perspectives of oncology nurses about work-related issues. METHODS: We searched international publications to identify relevant qualitative research exploring oncology nurses' experiences. Thematic analysis was used to identify key themes and synthesize them. RESULTS: We identified 63 articles from 61 studies (>1000 nurses) from 23 countries. Two main themes emerged: (1) the relational dimension of work-related issues, on the one hand with other professionals and on the other hand with patients and families; and (2) the strategies for coping with the work-related difficulties, including partnership, communication and support, and training. CONCLUSIONS: Our results revealed the central place of loneliness. The nurses simultaneously described feeling lonely due to their individual stance and being alone due to the absence of institutional support, with a confusion between these 2 forms of loneliness. This finding echoes specific aspects of oncology. IMPLICATIONS FOR PRACTICE: Specific training and support group appear to be relevant ways to help oncology nurse to cope better with this loneliness and to bear the stress of this difficult field.

Physicians' Perspectives About Burnout: a Systematic Review and Metasynthesis.

BACKGROUND: Doctors' burnout is a major public health issue with important harmful effects on both the healthcare system and physicians' mental health. Qualitative studies are relevant in this context, focusing as they do on the views of the physicians of how they live and understand burnout in their own professional field. OBJECTIVE: To explore physicians' perspectives on burnout by applying a metasynthesis approach, including a systematic literature review and analysis of the qualitative studies. DATA SOURCES: Medline, PsycINFO, EMBASE, and SSCI from the earliest available date to June 2018 REVIEW METHODS: This metasynthesis follows thematic synthesis procedures. Four databases were systematically searched for qualitative studies reporting doctors' perspectives on burnout. Article quality was assessed with the Critical Appraisal Skills Program. Thematic analysis was used to identify key themes and synthesize them. RESULTS: Thirty-three articles were included, covering data from more than 1589 medical doctors (68 residents and 1521 physicians). Two themes emerged from the analysis: (1) stress factors promoting burnout-ranked as organizational, then contextual and relational, and finally individual-factors and (2) protective factors, which were above all individual but also relational and organizational. CONCLUSIONS: The individual and organizational levels are abundantly described in the literature, as risk factors and interventions. Our results show that doctors identify numerous organizational factors as originators of potential burnout, but envision protecting themselves individually. Relational factors, in a mediate position, should be addressed as an original axis of protection and intervention for battling doctors' burnout.

Patients' perspectives on acromegaly diagnostic delay: a qualitative study.

Context Acromegaly has a substantial diagnostic delay associated with an increased risk of comorbidities and psychosocial deterioration. Qualitative methods which focus on the ways that individuals understand and relate to what they are experiencing are the best methods for exploring patients' perspectives. To the best of our knowledge, they have not been developed in the context of acromegaly. Objectives This study aimed to explore the experience of the diagnostic pathway of patients with acromegaly. Design We conducted a qualitative study, based on 20 face-to-face unstructured interviews in a third referral Endocrinology center. Participants, purposively selected until data saturation, were patients with acromegaly with diverse disease durations, types of treatment or associated comorbidities. The data were examined by thematic analysis. Results Our analysis found four themes: (i) what happened for patients before the diagnosis; (ii) what happened after; (iii) the style or type of doctor involved and (iv) patients' suggestions for limiting diagnostic delay. Our findings underlined the direct associations between diagnostic delay and the doctor-patient encounter, and the truly catastrophic experience of this disease, both before and after the diagnosis. Conclusions Diagnosis of acromegaly requires active medical involvement and awareness. Intervention of patient-experts in medical schools may help to be more aware of this disease. Endocrinologists caring for patients with acromegaly should also address the catastrophic dimension of the patient's experience and initiate the narrative to help them to put it into words for preventing harmful consequences such as social isolation and QoL impairment, but also anxiety or depression.

Perspectives of patients and physicians about neuroendocrine tumors. A qualitative study.

PURPOSE: Gastrointestinal neuroendocrine tumors (NETs) are rare, complex to manage, and often have a chronic course. Qualitative methods are a tool of choice for focusing on patients' and physicians' points of view especially when dealing with a complex and rare disease. Nonetheless, they remain undeveloped in research related to NETs. This study aimed to explore the experience of NETs among both patients and their physicians and to cross their perspectives for the purpose of finding pathways to improving care. RESULTS: Our analysis found two themes: (1) the questions raised by this disease, and (2) the complex experience of this singular disease. Our findings underlined the experience of confusion found among patients regarding the patient's unusual somatic experience and around the question of vocabulary, i.e. the naming of the disease and the semantic field of severity in the medical discourse. CONCLUSION: Means for reducing the confusion that patients experience in this disease are needed. The explanations that the physician offers to the patient must clarify the issues related to NETs. We therefore propose a statement that all physicians can use to support patients diagnosed with neuroendocrine tumors to clear up potential confusion. METHODS: We conducted a qualitative study, based on 40 semi-structured interviews, in a specialized department of gastro-pancreatology. Participants, purposively selected until data saturation, came from two different sub-samples: (i) patients with a metastatic NETs (N = 20) and (ii) their referring physicians (N = 10). The data were examined by thematic analysis.