Subjective Experience Of Illness Research Articles

D’une institution à l’autre : de l’hypercomplexité de l’hôpital à la place singulière des psychologues institutionnels référés à la psychanalyse

ContextThis article aims to open a debate on how our contemporary societal context, both psychically and structurally, shapes the essential institution that is the public hospital. ObjectivesTo achieve this, the authors start with a clinical construction that allows them to highlight the hypercomplexity of the situations encountered daily by those who inhabit these spaces, including patients, their relatives, and the diverse healthcare providers. Following this, they focus on the unique role of the institutional psychologist who is referenced to psychoanalysis. MethodThe situation that opens this text, providing both its starting point and framework, is a clinical fiction. This narrative is composed of fragments from real, recurrently observed situations in our practice, supervision, and research settings – in other words, from foundational cases (Fustier, 2020). We align ourselves with a Freudian tradition, adopting the principle of analytical construction, positing that this situation is an initial level of interpretation of the hypercomplexity we aim to explore throughout this text. ResultsThe hypercomplexity observed and described in this clinical fiction led us to formulate numerous hypotheses and highlight the essential presence of psychoanalysis in hospitals. Psychoanalysis offers the necessary perspective to elaborate and impart meaning to otherwise unthinkable situations. InterpretationsFrom the conjunction of subjective experiences of somatic illness to the institutional issues unique to hospitals – intersected by the divergent representations of healthcare professionals – we emphasize the unique position of the psychodynamically oriented psychologist within this complex system.

Experiences of patients with endometriosis with a digital health application: a qualitative analysis

BackgroundEndometriosis is a frequent disease in women of reproductive age in which the endometrium occurs outside the uterine cavity. Multimodal treatment approaches are necessary due to loss of quality of life and the chronic nature of the disease. Digital health applications (DiGa) are becoming increasingly important. This research project investigates how a healthcare app can influence the subjective experience of illness in patients with endometriosis.MethodsEmpiric data were collected through semi-structured interviews. Data analysis was carried out using qualitative focussed interview analysis. Reliability was ensured by joint interdisciplinary and interprofessional evaluation of the interviews by experts and those affected.ResultsTen patients with endometriosis and the prescribed healthcare app Endo-App© were examined. Categories were defined from the superordinate categories “Factors influencing the experience of illness” and “Evaluation of the app”. The app provided reliable information, promoted self-efficacy through exercises and strengthened the perception of the individuality of the illness. It helped to minimise nocebo effects from internet research and enabled a positive change of perspective. Patients criticised the time required for data input and had data protection concerns. The educational elements were often seen as redundant. Some patients only used the app briefly, or not at all.ConclusionOnce a DiGa has been prescribed, it may be useful to explain its use on an outpatient basis and validate regular use. Blind re-prescribing of DiGas should be avoided. Younger patients with a recent diagnosis or patients following rehabilitation may benefit more from prescribing.

Is it useful to understand disease through Husserl’s transcendental phenomenology?

This article explores the relationship between disease and our understanding of it through the lens of Husserl’s phenomenology. It argues that understanding disease requires us to examine the fundamental conditions and various aspects and that phenomenology provides a way to do this. Husserl’s transcendental phenomenology helps us identify the structures of experience necessary for the possibility of experiencing disease, and to recognize how these structures shape our understanding of it. His transcendental philosophy reveals that the subjective experience of illness can be understood in terms of general concepts. In this point, this article will critically sketch some misunderstandings of disease, followed by an exploration of phenomenological explorative methods. Husserl’s phenomenological inquiry is significant in its disclosure of ways in which internal experiences can be shared as general concepts.

Patients’ lived experience and reflections on long COVID: an interpretive phenomenological analysis within an integrated adult primary care psychology NHS service

BackgroundLong Covid is an unknown illness which has been shown to affect sufferers regardless of mild initial COVID-19 or age. There is still a lot unknown about long COVID illness. There has been a call to understand this illness not only from a professional standpoint but also through the lived experience of patients. Patient reported outcomes through lived experience research is one such angle. To date, no research has explored the overall lived experiences and long COVID illness trajectory perspectives of the patients. This study aimed to gather patient reported outcomes of their long COVID through lived experience research. It recruited adult participants aged 18-years and over who had been referred to a primary care integrated psychology service. The study employed qualitative research using semi-structured interviews and Interpretive Phenomenological Analysis methodology.ResultsA total of eighteen participants completed the study. From their lived experiences, the participants uncovered the varied symptoms of long COVID. They also uncovered their lived progression of living with an unknown chronic illness. Common themes included uncertainty, mental and social impacts, and the processes of self-advocacy, mastering their symptoms, subjective recovery and future coping.ConclusionThis study uncovered the lived experience of long COVID in participants. The results from this study uncovered the lived subjective biopsychosocial experiences of long COVID chronic illness. Traditionally, patients receive care and recommendations from healthcare professionals. However, as long COVID is a new illness, this care model was limited. The participants in the current study described being left with a sense of uncertainty and role confusion. However, participants were able to realize their locus of control over their long COVID illness progression. This illustrates that patients have the resources to uncover the unknowns of this new illness which could inform clinical practice and further research. This suggests that that long COVID needs to be approached from a biopsychosocial perspective which emphasises patient involvement.

Clinical Markers Associated With Risk of Suicide or Drug Overdose Among Individuals With Smoking Exposure: A Longitudinal Follow-up Study of the COPDGene Cohort

Studies have shown that COPD and smoking are associated with increased suicide risk. To date, there are no prospective studies examining suicide risk among individuals with smoking exposure along a spectrum of pulmonary diseases ranging from normal spirometry to severe COPD. Which clinical variables predict death by suicide or overdose of indeterminate intent in a large cohort of individuals with smoking exposure within the Genetic Epidemiology of COPD (COPDGene) study? We studied data from 9,930 participants involved in COPDGene, a multisite, prospective cohort study of individuals with smoking exposure. Primary cause of adjudicated deaths was identified by using death certificates, family reports, and medical records. Time to death by suicide/overdose was examined as the primary outcome in Cox regression models including age, sex, race, BMI, pack-years, current smoking status, airflow limitation (FEV1 %predicted), dyspnea (modified Medical Research Council scale score≥ 2), 6-min walk distance, supplemental oxygen use, and severe exacerbations in the prior year with time-varying covariates and other causes of death as a competing risk. The cohort was 47%female and 33%Black (67%White); they had a mean ± SD age of 59.6 ± 9.0 years and a mean FEV1 %predicted of 76.1 ± 25.5. Sixty-three individuals died by suicide/overdose. Factors associated with risk of suicide/overdose were current smoking (hazard ratio [HR], 6.44; 95%CI, 2.64-15.67), use of sedative/hypnotics (HR, 2.33; 95%CI, 1.24-4.38), and dyspnea (HR, 2.23; 95%CI, 1.34-3.70). Lower risk was associated with older age (per-decade HR, 0.45; 95%CI, 0.31-0.67), higher BMI (HR, 0.95; 95%CI, 0.91-0.99), and African-American race (HR, 0.41; 95%CI, 0.23-0.74). Severity of airflow limitation (FEV %predicted) was not associated with suicide risk. In this well-characterized cohort of individuals with smoking exposure with and without COPD, risk factors for suicide/overdose were identified that emphasize the subjective experience of illness over objective assessments of lung function.

The Ontology of Oncology: Navigating Cyborgs and Assemblages Through Cancer Treatment

ABSTRACT Through narrative, the subjective experience of illness offers a corrective to biomedicine’s interpretive grip. Narrative is both process and product and illness narratives, in particular, are examples of embodied research. This ecopathography – drawing upon embodied experiences of treatment and recovery from late stage Non-Hodgkin’s lymphoma – enlists Haraway’s cyborg and Lupton’s digital assemblage in an effort to make broader claims about patient care in the United States, and specifically, the role of technology in healthcare and in the construction of patient identity. A surgically implanted port (facilitating blood draws and the delivery of chemotherapy) and the patient portal (representing the results of those blood draws as well as a medium for communication) provide a foundation for how cyborgian assemblages both assist and trouble the cancer experience. At stake is the fluidity and ambiguity of boundaries (human/machine, human/animal, and physical/virtual) and the management of those boundaries with regard to patient care.

“I Just Can't Take It Anymore”: Using Suicide Notes to Understand Suicidality in Older Adults

<h3>Introduction</h3> Suicide is a complex multifactorial process that can result from a variety of biological, psychosocial and social stressors. The relative contributions of these stressors vary across the lifespan, as has been shown through epidemiological studies. Older adults face a unique set of challenges which may predispose them to suicidal ideation and suicide completion. Our study explored the subjective experience of mental illness and suicidality through the analysis of suicide notes, specifically in the older adult population. <h3>Methods</h3> Suicide note samples were obtained from the Office of the Chief Coroner for Ontario for suicide deaths in Toronto, Canada between 2003 and 2009. We employed a constructivist grounded theory informed analysis of written samples, whereby thematic analysis was conducted through line-by-line open coding, axial coding and theorizing of data. Demographic data and method of suicide were also collected. <h3>Results</h3> A total of 29 suicide notes (average 221 words per letter; range 6-1095) written by individuals 65 years and older (average age 76.2±8.3) at time of death were included in the analysis. Expressed reasons for suicide centred on themes of burdensomeness, experiences of mental illness, loneliness/isolation and physical health/disability. Suicide notes also elucidated the writers' conceptions of suicide as well as their emotional responses to stressors. <h3>Conclusions</h3> Suicide notes offer a unique window into the lived experience of those at highest risk of suicide. Our study can help bridge the gap between the known risk factors for suicide in older adults, with the subjective thoughts and emotions of those in distress.

Radiotherapy: death talk on Primetime National Radio - The Steve Hewlett interviews

ABSTRACT Between October 2016 and February 2017, BBC Radio 4 broadcast a series of interviews with presenter Eddie Mair and journalist Steve Hewlett, following Hewlett’s diagnosis with oesophageal cancer. These interviews, which became compelling listening – and for a brief moment, part of public conversation – provide the focus for this article. Three broad but overlapping themes are identified from analysis of the interviews: 1) the subjective lived experience of illness, and specifically, oesophageal cancer; 2) the experience of navigating UK cancer care, and debates about the organisation and delivery of UK healthcare; and 3) the function of talk in mediating the experience of living with/dying from cancer. Two further strands are woven into the discussion: the specificity of male cancer talk; and radio as a medium for facilitating first-person narratives of illness/dying.

When Lay Knowledge is a Symptom: The Uses of Insight in Psychiatric Interventions

In psychiatry, the concept of “insight” commonly refers to a patient’s judgment that they have a mental illness and need clinical treatment. However, this concept has been criticized because it imposes psychiatric knowledge on the subjective experiences of mental illness and possible interventions. A significant body of literature is critical of mental health interventions; however, insight remains under-explored in this realm. This paper adds to critical analyses of insight by exploring how it is defined and deployed by mental health professionals in an acute inpatient mental health unit in a Canadian general hospital and what disciplinary and epistemic effects it has on patients. To this end, I draw on Foucault’s theories of psychiatric power and Fricker’s concept of epistemic injustice to analyze results from an ethnographic study conducted in an inpatient mental health unit. The results show how patients’ resistance to medical compliance is framed by staff as a lack of insight, which reinforces the psychiatric model of mental illness.

Health on Social Media: Mediatization of Subjective Experience?

Social media arguably have transformed the way people communicate about health. Research has documented that social media offer a forum for the expression of subjective experience, feelings, and personal management of illness, marking a groundbreaking shift from illness as a private experience, to the personalization of public health debates. Most studies, however, are focused on specific patient groups and forums dedicated to health and do not cover a broader range of postings, political debate, and information sharing on social media. With this backdrop, this paper explores the bigger picture of health communication on social media by harnessing machine learning methods including supervised classification and topic modeling applied to 280,000 Norwegian social media posts published on Twitter, Online Forums, and Instagram during the period 2012-2018. The results show that only one-third of the posts can be characterized as personalized communication. Furthermore, there are important differences across social media platforms—the forums being most personalized and Twitter being less personalized. The topic analysis reveals that health communication on social media reflects three sets of concerns—illness or health conditions, the health care system and its professionals, and life-styles issues—that display different levels of personalization across platforms and over time.

Die Phänomenologie der Medizin und ihre feministische Kritik

AbstractThe phenomenology of medicine is that part of the research field of the philosophy of medicine that asks about the subjective experience of illness. In contrast to the philosophy of medicine, the phenomenological approaches explicitly include medical and bioethical questions as part of their research interests. The paper provides an overview of the most important questions and topics of the phenomenology of medicine. Subsequently I will refer to the fundamental critique articulated by feminist positions in the field of phenomenology of medicine. In addition to the socio-political contextualisation of the experience of illness, this also includes the necessary recourse to empirical research.

Exploring Well-Being Outcomes Among Persons Living with Dementia: Self-Reports Versus Caregiver Proxy Reports

Literature documents positive effects of religion and spirituality on health including improved cognitive function, quality of life, and well-being. Extant research suggests that persons living with dementia (PWD) are more likely to have spiritual needs and rely on others to support their spiritual well-being than those without dementia. However, spiritual care is absent or minimally present in dementia care. To effectively address spiritual needs of PWDs, accurate screening and assessment is critical. We conducted an integrative review of the current literature on measures of religion and spiritualty for PWDs by searching five databases (ATLA Religion, CINAHL, PsychInfo, PubMed, and SocIndex) and identified 14 studies that were peer-reviewed original research articles focusing on assessment of religion/spirituality among PWDs and published between 2000-2020 in English. Most were conducted in Europe (n=7), included PWD in mild stage (n=68) from various settings, and were cross-sectional in design (n=8). Of a total of 17 measures identified, 6 were originally developed for the general population and then adapted for PWD, and only 3 were validated for PWD. A majority of the studies were limited in sample size, generalizability, methodological rigor, and measure validation. More research is needed using diverse samples and rigorous study designs to develop valid screening and assessment tools for this population. Improving religious and spiritual measures could greatly impact public health by improving quality of life for millions of individuals suffering from dementia and their caregivers who carry a heavy burden.

The making and unmaking of Hashimoto's thyroiditis: On the mismatch between illness and disease. Results from an Italian study.

The diagnostic process in contemporary medical practice is increasingly technical, specialised and relying on population-based ranges of biological normalcy. Disease is defined according to a hierarchy of evidence that privileges specialist knowledge and marginalises subjective experiences of illness. Medical and individual definitions of the situation can conflict in two ways: (i) a diagnosis is made in the absence of symptoms, (ii) individual suffering does not constitute 'real' disease if it is not validated by scientific evidence. This article investigates how the discrepancy between specialist and embodied knowledge is experienced and tentatively solved by patients' self-narratives. Starting from the analysis of 22 in-depth interviews with people affected by autoimmune diseases, we focus on the subgroup affected by Hashimoto's thyroiditis. Applying the most-different-systems design, we confront two flesh-and-blood ideal-types of illness narratives characterised by a mismatch between illness and disease. Their diagnostic trajectories are outlined and discussed as poles of a continuum of experiences resulting from different configurations of medical evidence of disease and subjective evidence of illness.

Case vignettes for simulated patients based on real patient experiences in the context of OSCE examinations: workshop experiences from interprofessional education.

Background: Patient-centredness (PCN) is an increasingly demanded objective in health care and has gained importance for the care situation, for research, and the education of healthcare professions. The literature shows that the term PCN is not uniformly defined. Key aspects for the concept of PCN can be found in the integrative model and its dimensions by Scholl and colleagues (2014), which are incorporated into the acquisition of competencies in Objective Structured Clinical Examination (OSCE) examination formats. The inclusion of subjective experiences of persons directly affected in health-related situations is recognized as an important factor for continuous improvement in health care. In the interprofessional education of healthcare professions, subjective experiences serve as a starting point in relation to OSCE exams. In this context, the project “DIPEx” “Database of Individual Patients’ Experiences” stands for the systematic collection and evaluation of subjective experiences of illness using scientific methods.Aim: The aim of this interprofessional training workshop was to show how PCN can support the writing of case vignettes based on real experiences from systematically collected narratives within the DIPEx project, as well as the preparation of simulation subjects for OSCE examinations in the healthcare professions.Methods: Interactive, moderated workshop with two theory-based input presentations on the systematic development of interprofessional case vignettes based on four steps, group work with synthesis in the form of statements, and a concluding outlook. Results: With regard to the aims of the workshop, the synthesis included results at two levels: exemplary results on aims not explicitly addressed: Interprofessional teaching is full of presuppositions and requires clarification of four different perspectives in advance to be included in case development;exemplary results on explicitly addressed aims: Listening to and incorporating the real-life experiences and narratives of persons directly affected in health-related situations and their families was seen as an important learning aspect for PCN in relation to the practitioner-patient relationship. Five key statements on explicit aims for case development involving PCN emerged from the group work. Conclusion: Competency-based interprofessional education of health professionals and PCN can benefit from real patient narratives of health and illness as simulated patients can portray roles in OSCE formats in a realistic and convincing manner.

Reflections on a person's experience of mental illness: an innovative teaching pilot for second-year medical students

AimsWe sought to develop a teaching pilot to help year 2 medical students meet the following learning outcomes: Develop a better understanding of patient and carer experiences of mental illness; Recognise and challenge unhelpful attitudes towards people with mental illness; Promote a broader understanding of cultural issues surrounding mental illness, including stigma and discrimination.Method337 medical students were invited to attend a lecture by author LQ, a documentary photographer who presented a narrative of his brother Justin's lived experience of schizophrenia (louisquail.com/big-brother-introduction). 197 students attended the session, which was recorded and made available online. Students were invited to enter a competition to win a signed copy of LQ's book, ‘Big Brother’ and asked to submit either a 500-word written reflective piece, or a creative work accompanied by a 200-word statement. 13 submissions were received, including paintings, drawings, collage, photography, and poetry, all of which were blind rated by authors SR and GB, based on originality and quality of reflection. Of the six shortlisted, three winning entries were chosen by author LQ.ResultAll reflections moved away from a technical understanding of schizophrenia, towards person-centred interpretations, with dominant themes of ‘stigma’, ‘disempowerment’, ‘understanding people as individuals’, ‘subjective experience of mental illness’, ‘inclusion’ and ‘healing power of nature’.The three prize winners (authors GY, AK and KT) used different mediums: GY painted an osprey over a chaotic collage of disordered and stigmatizing words (the osprey representing empowerment and the “reservoir for wellbeing in nature”); AK's sonnet began as an ode to the chaos of Justin's experience, but the concluding lines reframed this struggle, conveying feelings of hope and beauty; and KT's self-portrait, produced with a slow shutter-speed photograph, powerfully conveyed a sense of disorientation and disturbance. She reflected on how the stigma of mental illness affects self-perception. The talk was well-attended, and reflections were of high quality. A limitation of this pilot was that only a small proportion of students completed the reflective assignment.ConclusionInnovative teaching strategies are needed to address negative attitudes towards mental illness and psychiatry, which are prevalent amongst the medical profession. This pilot provides a model for combining carer-led, reflective, and creative elements in undergraduate psychiatry teaching, with the aim of challenging stigma. This model will be evaluated in a further study involving fifth year medical students, which will use a validated scale to measure change in students’ attitudes towards mental illness and psychiatry.

Irritability in Mood Disorders: Neurobiological Underpinnings and Implications for Pharmacological Intervention.

Feeling irritable is a common experience, both in health and disease. In the context of psychiatric illnesses, it is a transdiagnostic phenomenon that features across all ages, and often causes significant distress and impairment. In mood disorders, irritability is near ubiquitous and plays a central role in diagnosis and yet, despite its prevalence, it remains poorly understood. A neurobiological model of irritability posits that, in children and adolescents, it is consequent upon deficits in reward and threat processing, involving regions such as the amygdala and frontal cortices. In comparison, in adults with mood disorders, the few studies that have been conducted implicate the amygdala, orbitofrontal cortices, and hypothalamus; however, the patterns of activity in these areas are at variance with the findings in youth. These age-related differences seem to extend to the neurochemistry of irritability, with links between increased monoamine transmission and irritability evident in adults, but aberrant levels of, and responses to, dopamine in youth. Presently, there are no specific treatments that have significant efficacy in reducing irritability in mood disorders. However, treatments that hold some potential and warrant further exploration include agents that act on serotonergic and dopaminergic systems, especially as irritability may serve as a prognostic indicator for overall clinical responsiveness to specific medications. Therefore, for understanding and treatment of irritability to advance meaningfully, it is imperative that an accurate definition and means of measuring irritability are developed. To achieve this, it is necessary that the subjective experience of irritability, both in health and illness, is better understood. These insights will inform an accurate, comprehensive, and valid interrogation of the qualities of irritability in health and illness, and allow not only a clinical appreciation of the phenomenon, but also a deeper understanding of its important role within the development and manifestation of mood disorders.

In Search for the Meaning of Illness: Content of Narrative Discourse Is Related to Cognitive Deficits in Stroke Patients.

Stroke survivors undergo a thorough cognitive diagnosis that often involves administration of multiple standardized tests. However, patient’s narrative discourse can provide clinicians with additional knowledge on patient’s subjective experience of illness, attitude toward current situation, and motivation for treatment. We evaluated the methods of analyzing thematic content and story types in relationship to cognitive impairment in stroke survivors with no aphasia (including 9 left hemisphere damage – LHD patients, and 16 right hemisphere damage – RHD patients). Cognitive impairment was evaluated in comparison to a group of 25 patients with orthopaedic injury not involving the brain. Our findings primarily show that higher elaboration on own cognitive problems, physical ailments or coping strategies in LHD patients and cognitive problems, emotional issues and circumstances of illness onset in RHD patients is related to deficits in executive functions and retrieval of information from memory. Furthermore, RHD patients who use more chaos story type show lower executive functioning. However, these results did not survive the significance threshold of p < 0.05 after Bonferroni adjustment for multiple comparisons. In conclusion, this study provides preliminary evidence that stroke survivor’s narrative can constitute an additional source of clinically-relevant information regarding patient’s experience of illness and attitude toward recovery. This knowledge can aid clinicians and nurses in everyday interactions with the patients and support individualized strategy to treatment. Still, the current results need be confirmed with future studies in a larger cohort of stroke patients.

Glimpsing the raging seas that stop swans: A qualitative look at living with multimorbidity and pain in patients from a tertiary care service.

Multimorbidity requires complex and ongoing care. Understanding the subjective illness experience is critical to effective care. Literature isn’t clear about illness perception in patients with multimorbidity followed in services of high complexity. This study aims to investigate the illness experience based on narratives about daily living and symptoms of patients with multimorbidity and pain in a tertiary health care service.Methods:Qualitative narrative inquiry design with framework analysis from semi-structured interviews at a tertiary internal medicine outpatient clinic. Patients with Elixhauser comorbidity index ≧3 or and pain during the last week were included. Framework analysis was performed using 3 main patterns of illness experience from a previous study: “Gliding swan” (Resilience); “Stormy Seas” (Vulnerability); and “Stuck adrift” (Disruption); and identifying subthemes. One case study was selected from each main category. 43 patients, 14 classified as “gliding swan,” 12 as “stormy seas” and 17 as “stuck adrift.” Within the “gliding swan” group, positive examples of how to navigate through physical and emotional factors to sustain their wellbeing based on comprehension; In the “stormy seas” group, themes revolved around vulnerability, burden and ambiguity in relation to the health team. In the “stuck adrift” group the main content was about overwhelmed feelings and limitations.Conclusion(s):Narratives brought the content about lacking personalized understanding of diseases, with great emotional repercussion. Some meaningful anchors were highlighted. This study reinforces multimorbidity and pain interact and that healthcare professional should be aware of the turbulences that can disturb navigation in the raging seas of long-term multimorbid conditions.

Mapping the needs and psychological outcomes of Slovenian adolescent and young adult cancer patients: An exploratory mixed-method study.

With improving survival rates, it is becoming increasingly important to understand the psychological aspect and needs of young cancer patients and survivors. Our goal was to describe the self-reported levels of psychological distress, subjective illness experience and needs of young Slovenian cancer patients and survivors. Seventy-nine participants, aged 19-39years, answered questionnaires about anxiety, depression, mental defeat, cancer worry and their experience of learning the diagnosis and being treated. We used visualisations to demonstrate the relationship between anxiety and depression. The qualitative responses were summarised using a content analysis approach. Twenty-eight (35%) participants scored in the clinical range for anxiety and fifteen (19%) for depression. Cancer-related worry was common (85% reported at least one worry). Mental defeat was positively associated with measures of psychological distress. Those who felt negative about learning their diagnosis emphasised the need for more time, empathy and dignity. Psychological support during illness was seen as crucial. Anxiety and depression remain a problem for a subset of patients. Medical professionals working with young people with cancer should encourage a warm atmosphere as they attend to patients' needs and concerns.

Doctor-patient care relationship in genetic cardiomyopathies: An exploratory study on clinical consultations.

BackgroundThe present study aims to explore the setting of consultation and communication between physicians and patients affected by genetic cardiomyopathies, investigating how the two parts of the therapeutic relationship participate and share information.Methods and results45 adult patients affected by various cardiomyopathies took part in a prospective case study while attending consultations at a cardiologic outpatient clinic constituting an Italian referral centre for cardiomyopathies. A researcher observed the consultations, which were audio-recorded and transcribed. Transcripts were coded and an analysis of setting, type of communication implemented and participation of doctors and patients in terms of word-count and type of questions/answers was carried out.Overall word-count was significantly higher for physicians than for patients (t(44) = 9,506; p<0.001). Doctors were prone to ask closed questions (t(44) = -11,90; p<0.001) while patients preferred open answers (t(44) = 5.58; p<0.001), enriched with subjective issues related to their illness experience. Partial correlation highlights a significant positive relation between doctors’ closed question and patients’ open answers (r = .838; p<0.001).ConclusionsFindings emphasize patients’ need for adequate time and space to share their subjective illness experience with the physician, within an approach informed by the insights and recommendations of Narrative Medicine. These findings are instrumental to improving the specific clinical setting for individuals with genetic cardiomyopathies.