Multi-perspective Qualitative Study Research Articles

How do Educational Staff and Students in a Medical School Perceive Social Accountability? A Multi-Perspective Qualitative Interview Study

Background: The majority of medical education is currently biomedical, while the concept of social accountability is not always systematically integrated. Education on social accountability equips students with the knowledge and skills to be socially accountable health professionals. However, the existing definitions of social accountability are not consistently applied, and the perspectives of important stakeholders are lacking. This study explores the perceptions of medical students and educational staff members on the construct of social accountability. Methods: This study uses an exploratory qualitative design in which online semi-structured interviews were conducted with 28 educational staff members and 16 students at a medical school in the Netherlands. Participants were recruited using purposeful sampling and snowballing techniques. The interviews were qualitatively analyzed according to the grounded theory approach. Results and Conclusion: Amongst the participants, there was unfamiliarity with the term, social accountability. Participants mentioned the impact on society, institutional responsibility, and context-dependency as all features of social accountability. In line with previous studies, participants identified community-based learning and working, patient-centeredness, and diversity as sub-aspects of social accountability. Further aspects identified by the participants are sustainability, moral issues, and interprofessional collaboration. This study provided more insight into the construct of social accountability from the perspectives educational staff and students at a medical school.

Managing well-being in paediatric critical care: a multiperspective qualitative study of nurses’ and allied health professionals’ experiences

ObjectivesIt is well evidenced that healthcare professionals working in paediatric critical care experience high levels of burn-out, compassion fatigue and moral distress. This worsened during the COVID-19 pandemic. This work...

Primary care provision for young people with ADHD: a multi-perspective qualitative study.

Attention deficit hyperactivity disorder (ADHD) is a highly prevalent neurodevelopmental disorder. UK guidance states that primary care has a vital role in effective ADHD management, including referral, medication prescribing and monitoring, and providing broader mental health and wellbeing support. However, many GPs feel unsupported to provide health care for young people with ADHD. Inadequate health care is associated with rising costs for patients and society. To investigate the experiences of young people with ADHD accessing primary care in England, from the perspectives of people with lived experience of ADHD and healthcare professionals (HCPs). A qualitative study. Interviews were conducted with HCPs (GPs, practice managers, and a wellbeing worker) and people with lived experience of ADHD (young people aged 16-25 years and their supporters) located in integrated care systems across England. Semi-structured interviews were conducted with participants at five purposively selected general practices (varying by deprivation, ethnicity, and setting). Questions focused on experiences of accessing/providing health care for ADHD. Reflexive thematic analysis was undertaken within a critical realist framework to understand how provision works in practice and to explore potential improvements. In total, 20 interviews were completed with 11 HCPs and nine people with lived experience. Three themes were generated: a system under stress, incompatibility between ADHD and the healthcare system, and strategies for change in ADHD primary care provision. Standardisation of ADHD management in primary care, providing better information and support for HCPs, and advising on reasonable adjustments for people with lived experience could help improve access to effective treatments for young people living with ADHD.

Factors influencing the healthcare transition in Chinese adolescents with inflammatory bowel disease: a multi-perspective qualitative study

BackgroundThe development and implementation of the transition from pediatric to adult healthcare systems for adolescents with inflammatory bowel disease (IBD) should consider stakeholders’ perceptions. This study aimed to explore the factors influencing the transition of Chinese adolescents with IBD from the perspectives of patients, parents, and healthcare providers.MethodsA descriptive qualitative research was conducted. Purposive sampling was used to recruit 36 participants, including 13 patients, 13 parents, and 10 providers, from a tertiary pediatric IBD center, a tertiary adult IBD center, and the China Crohn’s & Colitis Foundation in Zhejiang Province, China. Individual semi-structured interviews were used to collect data on facilitators and barriers to the transition process. Conventional content analysis was used to analyze the interview transcripts.ResultsNine primary themes were identified. Patients with young age, prolonged disease duration, severe disease, academic pressures such as the Gaokao, low level of disease acceptance, limited transition consciousness, low self-efficacy, poor transition communication, and inadequate medical transition system serve as barriers. While patients with the mentality of guilt towards their parents; parents with low education levels and intensive work schedules, high levels of disease acceptance, and situations of parent-child separation; stakeholders with high transition consciousness, high transition self-efficacy, and effective transition communication act as facilitators. Furthermore, community support and hospital guide services were also contributing factors during the transition.ConclusionsThis study offers comprehensive insights into the factors affecting the transition of Chinese adolescent IBD patients. The process is continuously influenced by stakeholders, community, and healthcare environments and policies. Identifying these factors provides healthcare providers with a reference for developing and implementing targeted transition interventions.

Impact of a prehabilitation and recovery programme on emotional well-being in individuals undergoing cancer surgery: a multi-perspective qualitative study

BackgroundPrehabilitation and recovery programmes aim to optimise patients’ physical fitness and mental well-being before, during and after cancer treatment. This paper aimed to understand the impact of such a programme on emotional well-being in individuals undergoing cancer surgery. The programme was multi-modal, containing physical activity, well-being and nutritional support.MethodsQualitative interviews were conducted with 16 individuals who participated in a prehabilitation and recovery programme. Twenty-four health care staff involved in referral completed an online survey. An inductive, thematic analysis was conducted, integrating perspectives of patients and staff, structured with the Framework approach.ResultsPatients seemed to experience emotional benefits from the programme, appearing less anxious and more confident in their ability to cope with treatment. They seemed to value having something positive to focus on and control over an aspect of treatment. Ongoing, implicit psychological support provided by Exercise Specialists, who were perceived as expert, available and caring, seemed valued. Some patients appeared to appreciate opportunities to talk about cancer with peers and professionals. Discomfort with talking about cancer with other people, outside of the programme, was expressed.ConclusionsParticipation in a prehabilitation and recovery programme appeared to yield valuable emotional well-being benefits, even without referral to specialist psychological support.Study registrationThe study protocol was uploaded onto the Open Science Framework 24 September 2020 (https://osf.io/347qj/).

A Multi-Perspective Qualitative Study About Working With Autistic Individuals in Prison-Based Interventions to Address Sexual Offending

Research suggests that sexual offending is one of the more common forms of offending behaviour committed by autistic individuals. Despite this, very little research has investigated approaches to rehabilitation for autistic individuals who have sexually offended. The small body of literature that does exist suggests that interventions to address sexual offending may not be sufficiently adapted for this group. In this paper we present an exploratory qualitative study that (i) explores how prison-based interventions to address sexual offending are experienced by autistic individuals with sexual offense convictions and the staff who work with them, and (ii) identifies and explores the features of prison-based sexual offending interventions that may be challenging or beneficial for autistic individuals, from the perspective of those involved in treatment. Semi-structured interviews were conducted with 12 autistic men serving prison sentences for sexual convictions, and 13 members of prison staff. A multi-perspective phenomenologically-informed thematic (MPT) analysis identified three themes of ‘Feeling overwhelmed’, ‘Out of the comfort zone’, and ‘(Dis)connected to others’. These themes highlight some of the key issues relating to the format and delivery of interventions, as well as the impact of the broader prison context on rehabilitation.

"I'd rather wait and see what's around the corner": A multi-perspective qualitative study of treatment escalation planning in frailty.

People living with frailty risk adverse outcomes following even minor illnesses. Admission to hospital or the intensive care unit is associated with potentially burdensome interventions and poor outcomes. Decision-making during an emergency is fraught with complexity and potential for conflict between patients, carers and clinicians. Advance care planning is a process of shared decision-making which aims to ensure patients are treated in line with their wishes. However, planning for future care is challenging and those living with frailty are rarely given the opportunity to discuss their preferences. The aim of the ProsPECT (Prospective Planning for Escalation of Care and Treatment) study was to explore perspectives on planning for treatment escalation in the context of frailty. We spoke to people living with frailty, their carers and clinicians across primary and secondary care. In-depth online or telephone interviews and online focus groups. The topic guide explored frailty, acute decision-making and planning for the future. Data were thematically analysed using the Framework Method. Preliminary findings were presented to a sample of study participants for feedback in two online workshops. We spoke to 44 participants (9 patients, 11 carers and 24 clinicians). Four main themes were identified: frailty is absent from treatment escalation discussions, planning for an uncertain future, escalation in an acute crisis is 'the path of least resistance', and approaches to facilitating treatment escalation planning in frailty. Barriers to treatment escalation planning include a lack of shared understanding of frailty and uncertainty about the future. Emergency decision-making is focussed on survival or risk aversion and patient preferences are rarely considered. To improve planning discussions, we recommend frailty training for non-specialist clinicians, multi-disciplinary support, collaborative working between patients, carers and clinicians as well as broader public engagement.

Stakeholders’ perceptions and experiences of an outdoor activity project on children myopia prevention: a multiperspective qualitative study

Abstract Objective: The current investigation sought to examine the experiences and perspectives of the project coordinators, participating parents, and children to identify strategies for enhancing children’s engagement and adherence to outdoor physical activities. Methods: A descriptive, qualitative study was conducted from October 2019 to December 2019 through in-depth interviews with 32 families who participated in the Community Child Myopia Prevention Project, 15 project volunteers, and 8 community organizers. Results: Five themes and 10 subthemes were identified to enhance children’s participation rate and adherence to the project. The 5 themes were as follows: (1) overcoming parental barriers, (2) attracting parental participation, (3) active support from parents, (4) creating a positive experience for children, and (5) integration into children’s daily lives. Conclusions: Empowering parents and children by meeting their needs, creating innovative activities, and connecting them with community social networks support the successful integration of the outdoor activity program into their daily lives. The sharing and integration of community resources through community empowerment can provide a framework for developing future community interventional projects.

Influencing factors of home exercise adherence in elderly patients with stroke: A multiperspective qualitative study.

Evidence has shown that stroke exercise rehabilitation is the most effective way to improve disease prognosis, but home exercise adherence in elderly patients with stroke is low due to they are more likely to have movement disorders, cognitive disorders, mental disorders, etc. Currently, most studies on exercise adherence in elderly patients with stroke are quantitative, and there is a lack of qualitative studies from the perspective of patients, caregivers, and medical staff. Considering the importance of home exercise adherence in elderly patients with stroke, the present study aimed to explore the influencing factors of home exercise adherence in them and summarize the potential ways to improve it. From October to December 2022, 9 medical staff, 12 elderly patients with stroke and 7 caregivers from a level A tertiary hospital and community health service center in Nanjing, Jiangsu Province were selected by the purposive sampling and were interviewed in a face-to-face semi-structured way. The data were analyzed and summarized by the phenomenological analysis of Colaizzi's method. The influencing factors of home exercise adherence in elderly patients with stroke can be summarized into 3 themes and 8 subthemes. These were individual factors (physical impairment, exercise self-efficacy, and depression), family factors (caregiving ability and emotional support); and stroke rehabilitation environment (exercise prescription, monitoring and feedback, and organizational policy). Home exercise adherence in elderly patients with stroke was influenced by many factors. Medical staff should assess the patient's physical function and depression, establish a multi-support system, formulate personalized exercise prescription, pay attention to the monitoring and feedback of home-based exercise rehabilitation, and improve the home-based rehabilitation model for stroke, so as to improve the home exercise adherence in elderly patients with stroke and promote the best rehabilitation effect.

When chronic critical illness is a family affair: A multi-perspective qualitative study of family involvement in long-term care.

Those with chronic critical illness (CCI) remain dependent on life-sustaining treatments and increasingly reside in long-term care facilities equipped to meet their needs. The nature of family involvement in care remains undetermined thwarting approaches to mitigate poor family outcomes. The research objective was to explicate family involvement in the care of an individual with CCI who resides in long-term care. In this qualitative research, we used thematic analysis and constant comparative techniques to analyze data from interviews with 38 participants: 11 family members, 6 residents with CCI, and 21 healthcare providers. Involvement in care entailed family: (1) reorienting their life despite the stress and emotional toll; (2) assuming responsibility for meaningful activities and management of practical matters, yet struggling alone; (3) advocating for care by being present, reminding and pushing, and picking their battles; and (4) figuring out how to contribute to nursing care, but with unclear expectations. The burden of family caregiving was substantial, contrasting the assumption that family are relieved of their caregiver responsibilities when the patient with CCI is in a care facility. Research to address unmet family needs specific to their roles and responsibilities could potentially improve family outcomes and is warranted.

Specifics of and training needs in the inter-professional home care ofpeople with dementia.

Introduction: Successful home care for people living with dementia (PLwD) allows them to live in their own home environment for as long as possible. Current findings indicate a need for further development of medical and nursing knowledge and skills in evidence-based collaborative care for these patients. Aim: To identify specifics of inter-professional care for PLwD and training needs of home care nurses and general practitioners involved in care. Method: A multi-perspective qualitative study was conducted, comprising focus groups as well as individual interviews. Focus groups and interviews followed a semi-structured topic guide. Interview data was digitally recorded and transcribed verbatim, followed by a thematic framework analysis. Results: The sample consisted of nine nurses, one medical assistant, three general practitioners and nine family caregivers of PLwD. Five themes related to inter-professional home care were inductively developed: challenges in outpatient dementia care, challenges in collaboration, insufficient healthcare infrastructure, competencies needed in dementia care, and training requirements. Challenges were a lacking flow of information as well as continuity and organization of care. Home care nurses and family caregivers complained about missing communication skills in health professionals involved in the care of PLwD. Conclusions: The interviews revealed heterogeneous training needs of home care nursing staff and general practitioners that can be addressed by an inter-professional training course.

Exploring How U.S. High School Staff Support, Protect, and Affirm Sexual and Gender Minority Youth: Methods and Lessons Learned from a Qualitative Interview Study

Background. Sexual and gender minority youth (SGMY) experience health inequities compared with cisgender heterosexuals, and these inequities are heightened in areas with high structural stigma. Quantitative research shows school assets (e.g., adult support) are associated with better health for SGMY. Though some qualitative studies elucidated how school staff support SGMY, none have triangulated such strategies in a geographically and sociodemographically diverse sample of school staff and SGMY. This paper describes a multi-perspective qualitative study design and offers lessons learned from conducting such a study. Methods. Using a novel stratified sampling frame, we interviewed 60 SGMY and 29 school staff who attended/worked at high schools in U.S. states with low, medium, and high structural stigma. To ensure sociodemographic diversity, we constructed sampling quotas, and recruited SGMY using social media and staff using a multi-pronged approach. Results. The stratified sampling strategy met our goal of enrolling diverse SGMY and staff participants. SGMY participants attended schools in low ( n = 20), medium ( n = 22), and high ( n = 18) structural stigma states. We enrolled 18 cisgender girls, 18 cisgender boys, and 24 gender minority youth. Fifty-three percent of SGMY were youth of color, and 45% attended schools in rural areas. School staff participants worked at schools in low ( n = 11), medium ( n = 11), and high ( n = 7) structural stigma states. School staff participants were 55% heterosexual, 91% cisgender, and had diverse roles (e.g., teacher, principal, librarian, and nurse). Conclusions. This paper describes new methods for collecting qualitative data from diverse SGMY and school staff. Some lessons learned from this study include the importance of using trauma-informed interviewing methods, having a suicidality safety protocol, establishing a priori sampling quotas, and creating tailored social media advertisements. With these data we will explore the heterogeneity of SGMY and school staff experiences across varying structural stigma levels, yielding foundational information for future school-based interventions.

Self-regulation in Barth syndrome: a qualitative perspective of adolescents, adults and parents in the U.K

BackgroundBarth syndrome (BS) is a life-threatening genetic disease caused by abnormal lipids in the mitochondria of cells and mostly affects young males. Those living with BS have severe exercise intolerance, lethargy and fatigue due to muscle disease which affect their daily life. Previous research suggests a need for qualitative exploration of self-regulation in BS and the inter-personal processes at play in family life. Therefore this study aimed to explore self-regulation and coping strategies and inter-personal responses in individuals and families affected by Barth syndrome. A multi-perspective qualitative study based on face to face, semi-structured, in-depth interviews with 11 participants (9–27 years, mean 15 years) with BS and/or their parents participating in a randomised double-blind clinical drug trial (CARDIOMAN). Interviews were transcribed verbatim and managed in NVivo prior to conducting a thematic analysis (AS and GH).ResultsFour key themes were identified: diagnosis and treatment, social support, identity and social integration, symptoms and self-regulation. The present findings suggest that self-regulation and coping in boys with BS was interpersonal and contingent on parental awareness such that parents were aware that their child had a limited energy reserve and that had to be managed due to the implications of fatigue for daily living.ConclusionThe findings support previous quantitative work demonstrating that children and parents tend to share a coherent view of BS. However, there is a need for greater awareness from others within the wider context of social and employment networks to minimise adverse implications for future life choices.

Transition from a renal paediatric clinic to an adult clinic: Perspectives of adolescents and young adults, parents and health professionals.

The management of chronic kidney disease is complex. With disease management being the responsibility of parents in the paediatric renal clinic, the responsibility is gradually shifted to adolescents and young adults during the transition to adult care. This multi-perspective qualitative study aimed to explore the experiences of adolescents and young adults, their parents and health professionals to gain an insight into transitional care. Focussing on the transition process and transfer to adult care, 18 adolescents and young adults and eight mothers participated in individual semi-structured interviews. Additionally, three focus groups were conducted with 20 multidisciplinary health professionals. Data were transcribed verbatim and analysed thematically. Similar responses from adolescents and young adults and mothers included the reluctance to leave the paediatric health service. Mothers found the transition to adult care more challenging than the adolescents and young adults. While health professionals acknowledged that engaging adolescents and young adults in their own care was challenging, they believed parents had an important role in facilitating their child's independence. This study highlights that health professionals in both paediatric and adult health services need to work collaboratively. However, importantly, health professionals need to be mindful that parents require an equal amount of engagement as adolescents and young adults, if not more, to mitigate parental barriers in achieving a successful transfer.

Health-related expectations of the chronically critically ill: a multi-perspective qualitative study

BackgroundThose who survive critical illness only to become chronically critically ill (CCI) experience a high symptom burden, repeat episodes of illness exacerbation, communication barriers, and poor health outcomes. Yet, it is unclear how CCI individuals and their family understand their health and the importance of prognostic information following hospitalization. The research purpose was to examine expectations about health and disease prognosis of CCI residents in long-term care from the perspectives of the CCI themselves and their family members, as well as to describe healthcare provider (HCP) interpretations of, and reactions to, these health-related expectations.MethodsIn this qualitative interpretive descriptive study, conducted in British Columbia, Canada, 38 semi-structured interviews were conducted (6 CCI residents, 11 family members, and 21 HCPs) and inductively analyzed using thematic and constant comparative techniques.ResultsThere was divergence in CCI resident, family and HCP expectations about health and the importance of disease prognosis, which contributed to conflict. CCI residents and family viewed conflict with HCPs in relation to their day-to-day care needs, while HCPs viewed this as arising from the unrealistically high expectations of residents and family. The CCI residents and family focussed on the importance of maintaining hope, and the HCPs highlighted the complexity of end-of-life decisions in conjunction with the high expectations and hopes of family.ConclusionsThe emotional and ongoing process of formulating health-related expectations points to the need for future research to inform the development and/or adapting of existing communication, psychosocial and health services interventions to ease the burden experienced by those who are CCI.

Views about integrating smoking cessation treatment within psychological services for patients with common mental illness: A multi-perspective qualitative study.

BackgroundTobacco smoking rates are significantly higher in people with common mental illness compared to those without. Smoking cessation treatment could be offered as part of usual outpatient psychological care, but currently is not.ObjectiveTo understand patient and health care professionals' views about integrating smoking cessation treatment into outpatient psychological services for common mental illness.DesignQualitative in‐depth interviews, with thematic analysis.ParticipantsEleven Improving Access to Psychological Therapies (IAPT) psychological wellbeing practitioners (PWPs), six IAPT patients, and six stop smoking advisors were recruited from English smoking cessation, and IAPT services.ResultsPatients reported psychological benefits from smoking, and also described smoking as a form of self‐harm. Stop smoking advisors displayed therapeutic pessimism and stigmatizing attitudes towards helping people with mental illness to quit smoking. PWPs have positive attitudes towards smoking cessation treatment for people with common mental illness. PWPs and patients accept evidence that smoking tobacco may harm mental health, and quitting might benefit mental health. PWPs report expertise in helping people with common mental illness to make behavioural changes in the face of mood disturbances and low motivation. PWPs felt confident in offering smoking cessation treatments to patients, but suggested a caseload reduction may be required to deliver smoking cessation support in IAPT.ConclusionsIAPT appears to be a natural environment for smoking cessation treatment. PWPs may need additional training, and a caseload reduction. Integration of smoking cessation treatment into IAPT services should be tested in a pilot and feasibility study.Patient or public contributionService users and members of the public were involved in study design and interpretation of data.

Understanding the management of heart failure with preserved ejection fraction: a qualitative multiperspective study.

About half of all people with heart failure have heart failure with preserved ejection fraction (HFpEF), in which the heart is stiff. This type of heart failure is more common in older people with a history of hypertension, obesity, and diabetes mellitus. Patients with HFpEF are often managed in primary care, sometimes in collaboration with specialists. Knowledge about how best to manage this growing population is limited, and there is a pressing need to improve care for these patients. To explore clinicians' and patients'/carers' perspectives and experiences about the management of HFpEF to inform the development of an improved model of care. A multiperspective qualitative study involving primary and secondary care settings across the east of England, Greater Manchester, and the West Midlands. Semi-structured interviews and focus groups were conducted. Transcribed data were analysed using framework analysis and informed by the normalisation process theory (NPT). In total, 50 patients, nine carers/relatives, and 73 clinicians were recruited. Difficulties with diagnosis, unclear illness perceptions, and management disparity were identified as important factors that may influence management of HFpEF. The NPT construct of coherence reflected what participants expressed about the need to improve the identification, understanding, and awareness of this condition in order to improve care. There is a pressing need to raise the public and clinical profile of HFpEF, develop a clear set of accepted practices concerning its management, and ensure that systems of care are accessible and attuned to the needs of patients with this condition.

"Doing it Right" Overnight: a Multi-perspective Qualitative Study Exploring Senior Medical Resident Overnight Call.

Competency-based medical education (CBME) requires the development of workplace-based assessment tools that are grounded in authentic clinical work. Developing such tools, however, requires a deep understanding of the underlying facets of the competencies being assessed. Gaining this understanding remains challenging in contexts where performance is not readily visible to supervisors such as the senior medical resident (SMR) on-call role in internal medicine. This study draws on the perspectives of healthcare professionals with whom the SMR interacts with overnight to generate insights into the different components of on-call SMR practice and the range of ways SMRs effectively and less effectively enact these. We used a constructivist grounded theory (CGT) approach to examine variation in how on-call SMRs carry out their role overnight. Six medical students, five junior residents, five internal medicine attending physicians, five emergency physicians, and three emergency nurses conducted observations of their on-call interactions with SMRs. Participants were then interviewed and asked to elaborate on their observations as well as provide comparative reflections on the practices of past SMRs they worked with. Strong collaboration and organizational skills were identified as critical components to effectively being the on-call SMR. Perceived weaker SMRs, while potentially also having issues with clinical skills, stood out more when they could not effectively manage the realities of collaboration in a busy workplace. What consistently differentiated a perceived effective SMR from a less effective SMR was someone who was equipped to manage the realities of interprofessional collaboration in a busy workplace. Our study invites medical educators to consider what residents, particularly those in more complex roles, need to receive feedback on to support their development as physicians. It is our intention that the findings be used to inform the ways programs approach teaching, assessment, and the provision of feedback.

Appropriate Employment for Segregated Roma: Mechanisms in a Public-Private Partnership Project.

Our earlier article showed that increased employability of segregated Roma may improve their well-being and health. To achieve that, appropriate employment based on a public–private partnership could be the key. For optimal design of such a partnership, we need insight into its potential mechanisms. Evidence on this is lacking, however. This paper builds on the previously published article by focusing on mechanisms for achieving better health. Therefore, our aim was to identify the potential mechanisms by which a public–private Roma employment project could increase employability. We investigated a Roma employment project called Equality of Opportunity established by a private company, U.S. Steel Kosice in eastern Slovakia. We conducted a multi-perspective qualitative study to obtain key stakeholders’ perspectives on the potential mechanisms of a public–private Roma employment project in terms of increased employability. We found three types of mechanisms. The first type regarded formal job mechanisms, such as an appropriate employment and salary offer and a bottom-up approach in capacity building. The second type involved sustainability mechanisms, such as the personal profile of project and work-shift coordinators, the continuous offer of training and cooperation with relevant stakeholders (municipalities, community centers, etc.). The third type was cultural mechanisms, such as personal contact with project participants, attention to less-voiced groups like children, the motivation of project participants, a counter-value reciprocity approach and respect for the specifics of Roma history. Our findings imply that policymakers could consider public–private partnerships for increasing the employability of segregated Roma, as they have the potential to address a wider range of social needs simultaneously.

Patient-reported outcome measures in the interaction between patient and clinician \u2013 a multi-perspective qualitative study

BackgroundThis article addresses patient-reported outcome (PRO)-based follow-up used as a substitute for regularly scheduled follow-ups. In PRO-based follow-up, patients’ PRO data filled in by the patients at home are used by clinicians as a decision aid to identify those who need clinical attention based on an automated PRO algorithm, clinical attention being either a phone call or a physical consultation. A physical consultation in the outpatient clinic prompted by the patient’s PRO is termed a “PRO consultation.”In this multi-perspective qualitative study, we explored the influence of patients’ self-reported data on patient-clinician interaction during PRO consultations in epilepsy outpatient clinics. Interpretive description was the methodological approach, applying data from participant observations, informal interviews with clinicians, and semi-structured interviews with clinicians and patients.ResultsWe found that application and deliberate use of patients’ PRO measures can affect patient-clinician interaction, promoting patient involvement in terms of improved communication and increased patient activation. These findings reflect the general patterns that have been reported in the literature. In addition, we found that PRO measures also may induce unmet expectations among some patients that can have a negative effect on patients’ experiences of the interaction and their follow-up experience in general. We extracted two thematic patterns that represent PRO measures’ potential for patient involvement in the patient-clinician interaction. The first pattern represents enablers, and the second pattern represents barriers for PRO measures to affect patient involvement.ConclusionsApplying PRO measures in clinical practice does not automatically enhance the patient-clinician interaction. To strengthen the benefits of PRO measures, the following supplementary clinical initiatives are suggested: summarizing and reporting the PRO measures back to the patient, considering carefully which PRO measures to include, training clinicians and assuring that the patients’ introduction to PRO-based follow-up clarifies expectations.