Community-based mental health interventions in low- and middle-income countries: a qualitative study with international experts.

BACKGROUND: Mental health services are scarce in low- and middle-income countries (LMICs), and designing and implementing effective interventions can be difficult. The aim of this international study was to explore the key lessons for developing, implementing, and evaluating community-based mental health and well-being interventions in LMICs, with an additional focus on older adults. METHODS: Research and clinical experts in developing and implementing psychosocial community-based interventions in LMICs were interviewed remotely between October 2021 and January 2022. Participants were recruited via existing global health networks and via published literature searches. Participants were asked about their experiences of developing and implementing interventions, and about key barriers and facilitators during the process. Interviews lasted up to 45 min, and data were analysed using combined inductive and deductive thematic analysis. RESULTS: Sixteen global mental health experts participated. Five themes with different sub-themes were generated: Mechanisms and contexts; Barriers; Facilitators; Public and stakeholder involvement; Looking through an ageing lens. The development and delivery of mental health interventions in LMICs are facilitated through integration into existing health infrastructures and working with existing job roles as delivery agents. Public and stakeholder involvement are crucial at all stages of development through to implementation to focus on meeting local needs and sustaining participant motivation. Logistical barriers of transport, resources, and location need to be addressed, emphasising local sustainability. CONCLUSIONS: This study provides important insights for how the development, implementation, and evaluation of community-based mental health and well-being interventions in LMICs can be optimised, and can complement general guidance into complex interventions developments.

Clinician views on best practice community care for people with complex emotional needs and how it can be achieved: a qualitative study.

BACKGROUND: Individuals with Complex Emotional Needs (CEN) services, a working description to refer to the needs experienced by people who may have been diagnosed with a "personality disorder", face premature mortality, high rates of co-morbidity, service user and treatment costs. Service provision for this population is recurrently identified as needing to be transformed: there are serious concerns about quality, accessibility, fragmentation of the service system and the stigma and therapeutic pessimism service users encounter. Understanding clinician perspectives is vital for service transformation, as their views and experiences shed light on potential barriers to achieving good care, and how these might be overcome. In this study, we aimed to explore these views. METHODS: We used a qualitative interview design. A total of fifty participants from a range of professions across specialist and generic community mental health services across England who provide care to people with CEN took part in six focus groups and sixteen one-to-one interviews. We analysed the data using a thematic approach. FINDINGS: Main themes were: 1) Acknowledging the heterogeneity of needs: the need for a person-centred care approach and flexibility when working with CEN, 2) 'Still a diagnosis of exclusion': Exploring the healthcare provider-level barriers to providing care, and 3) Understanding the exclusionary culture: exploring the system-based barriers to providing care for CEN. Across these themes, staff highlighted in particular the need for care that was person-centred, relational, empathic, and trauma informed. Major barriers to achieving this are stigmatising attitudes and behaviour towards people with CEN, especially in generic mental health services, lack of development of coherent service systems offering clear long-term pathways and ready access to high quality treatment, and lack of well-developed structures for staff training and support. DISCUSSION: Overall, the findings point towards clinician views as generally congruent with those of service users, reinforcing the need for priorities towards systemwide change to ensure that best practice care is provided for people with CEN. Particularly prominent is the need to put in place systemwide training and support for clinicians working with CEN, encompassing generic and specialist services, and to challenge the stigma still experienced throughout the system. CONCLUSIONS: Staff working with this service user group report that delivering best practice care requires services to be flexible, integrated, and sustainably funded, and for staff to be supported through ongoing training and supervision.

Service user perspectives of community mental health services for people with complex emotional needs: a co-produced qualitative interview study.

BACKGROUND: There is consensus that services supporting people with complex emotional needs are part of a mental health care system in which change is needed. To date, service users' views and co-production initiatives have had little impact on the development of interventions and care. This needs to change, and our paper evidences the experiences and perspectives of a diverse range of people on how community services can best address the needs of people with complex emotional needs. METHODS: A co-produced qualitative research study. Lived experience researchers led data collection and analysis. Individual interviews were conducted with 30 people across England who had a diverse range of experiences and perspectives of using community services for complex emotional needs. Participants were asked about their experiences of using community services for their mental health, and views on how community services can best address their needs. Thematic analysis was used to analyse the data. RESULTS: Participants reported some experiences of good practice but also of experiences of severely stigmatising interventions, a lack of effective support and service fragmentation. Relational Practice was identified as the central overarching theme and describes how community services can best support people with complex emotional needs. This approach involves care delivered in a non-stigmatising, individualised and compassionate way and care that is trauma-informed. It involves care that is planned collaboratively with service users to ensure their multiple needs are addressed in a flexible, holistic and consistent way which accounts for the long-term and fluctuating nature of their needs. CONCLUSIONS: Relational practice approaches have potential to facilitate better community care for people with complex emotional needs. Research and service development are needed to examine how best to implement such approaches across the mental health service system. This work must be co-produced with people with relevant lived experience, their carers and the professionals who support them.

Participatory codesign of patient involvement in a Learning Health System: How can data-driven care be patient-driven care?

BACKGROUND: A Learning Health System (LHS) is a model of how routinely collected health data can be used to improve care, creating 'virtuous cycles' between data and improvement. This requires the active involvement of health service stakeholders, including patients themselves. However, to date, research has explored the acceptability of being 'data donors' rather than considering patients as active contributors. The study aimed to understand how patients should be actively involved in an LHS. DESIGN: Ten participatory codesign workshops were conducted with eight experienced public contributors using visual, collective and iterative methods. This led contributors to challenge and revise not only the idea of an LHS but also revise the study aims and outputs. RESULTS: The contributors proposed three exemplar roles for patients in patient-driven LHS, which aligned with the idea of three forms of transparency: informational, participatory and accountability. 'Epistemic injustice' was considered a useful concept to express the risks of an LHS that did not provide active roles to patients (testimonial injustice) and that neglected their experience through collecting data that did not reflect the complexity of their lives (hermeneutic injustice). DISCUSSION: Patient involvement in an LHS should be 'with and by' patients, not 'about or for'. This requires systems to actively work with and respond to patient feedback, as demonstrated within the study itself by the adaptive approach to responding to contributor questions, to work in partnership with patients to create a 'virtuous alliance' to achieve change. PATIENT OR PUBLIC CONTRIBUTION: Public contributors were active partners throughout, and co-authored the paper.

Community-based mental health and well-being interventions for older adults in low- and middle-income countries: a systematic review and meta-analysis.

BACKGROUND: Mental health support is often scarce in low- and middle-income countries (LMIC), with mental health stigmatised. Older adults are some of the most vulnerable members of society and may require specific types of mental health support. The aim of this mixed-methods systematic review and meta-analysis was to explore the types, components, and efficacy of psychosocial community-based mental health interventions for older adults (aged 60 + years) residing in LMIC. METHODS: Six databases were searched in August 2021. Studies published since 2000 were included if they collected primary quantitative or qualitative data on community-based interventions for improving mental health for older adults residing in LMICs, focusing on improving mental health and well-being outcomes. Full texts were screened by two researchers. RESULTS: From 24,378 citations identified, 40 studies met eligibility criteria. Across 12 countries, interventions were categorised into those focusing on (1) Established forms of psychological therapy; (2) Exercise; (3) Education; (4) Social engagement; (5) Multi-component. Most interventions were effective in reducing levels of depression, anxiety, and improving well-being, including reminiscence therapy, different types of socialising, and breathing and laughter exercises. Some interventions reported no benefits and those that did at times failed to report continued benefits at follow-up. Given the variations in intervention type and delivery, cultures, and outcome measures used, underpinning factors of intervention success or failure were difficult to establish. CONCLUSIONS: Psychosocial interventions for older adults in LMIC need to be adapted to local contexts depending on culture and population needs. Existing interventions and their components can be used as a foundation to produce adapted and multi-component interventions, to tackle growing and inadequate mental health care provision in LMIC. TRIAL REGISTRATION: The review protocol was registered on PROSPERO [CRD42021271404].

Understanding post-conflict mental health needs and co-producing a community-based mental health intervention for older adults in Colombia: a research protocol.

BACKGROUND: Older adults in Colombia have seen a number of stressful life events - including the Colombian armed conflict, forced misplacement and recently COVID-19. These events likely have had and are having a substantial impact on people's mental health and well-being, whilst mental health care provision in Colombia is not sufficient and often access is limited and unaffordable. Therefore, the aim of this study is to understand the impact of stressful life events on the mental health of older adults living in Colombia, and co-produce, pilot, and evaluate a community-based mental health intervention in Turbo. METHODS: This 3-year international mixed-methods study comprises of three phases: Phase I will explore the impact of stressful life events on the mental health of older adults living in Colombia, and their mental health needs, via quantitative needs assessments and qualitative interviews and focus groups; Phase II will involve synthesising the findings from Phase I as well as conducting a systematic review and qualitative interviews with experts into implementing mental health interventions in LMICs to co-produce a community-based mental health intervention with older adults and local community group leaders and care providers; Phase III will involve the piloting and evaluation of the mental health intervention via quantitative and qualitative assessments. Co-production and public involvement underpin each element of this project. DISCUSSION: Appropriate mental health care is as important as physical health care, but this study also looks at how we might integrate these findings into community-level public health initiatives for application both within Colombia and more widely in both LMICs and more developed countries. This study protocol will act as a guide for the development and adaptation of psychosocial mental health interventions in different cultures and contexts.

Co-designing new tools for collecting, analysing and presenting patient experience data in NHS services: working in partnership with patients and carers.

BACKGROUND: The way we collect and use patient experience data is vital to optimise the quality and safety of health services. Yet, some patients and carers do not give feedback because of the limited ways data is collected, analysed and presented. In this study, we worked together with researchers, staff, patient and carer participants, and patient and public involvement and engagement (PPIE) contributors, to co-design new tools for the collection and use of patient experience data in multiple health settings. This paper outlines how the range of PPIE and research activities enabled the co-design of new tools to collect patient experience data. METHODS: Eight public contributors represented a range of relevant patient and carer experiences in specialist services with varied levels of PPIE experience, and eleven members of Patient and Participation Groups (PPGs) from two general practices formed our PPIE group at the start of the study. Slide sets were used to trigger co-design discussions with staff, patient and carer research participants, and PPIE contributors. Feedback from PPIE contributors alongside verbatim quotes from staff, patient and carer research participants is presented in relation to the themes from the research data. RESULTS: PPIE insights from four themes: capturing experience data; adopting digital or non-digital tools; ensuring privacy and confidentiality; and co-design of a suite of new tools with guidance, informed joint decisions on the shaping of the tools and how these were implemented. Our PPIE contributors took different roles during co-design and testing of the new tools, which supported co-production of the study. CONCLUSIONS: Our experiences of developing multiple components of PPIE work for this complex study demonstrates the importance of tailoring PPIE to suit different settings, and to maximise individual strengths and capacity. Our study shows the value of bringing diverse experiences together, putting patients and carers at the heart of improving NHS services, and a shared approach to managing involvement in co-design, with the effects shown through the research process, outcomes and the partnership. We reflect on how we worked together to create a supportive environment when unforeseen challenges emerged (such as, sudden bereavement).

The way we collect and use patient experience data is important because of concern that patients and carers may be excluded by the limited ways it is currently done in NHS services. In this study, we worked in partnership with researchers, staff, patient and carer participants, and patient and public involvement and engagement contributors, to co-design new tools for the collection, analysis and presentation of patient experience data. We focused on services for people with musculoskeletal conditions and services for people with severe mental health conditions. Our PPIE group, formed at the start of the study, represented a range of relevant and diverse health experiences from patients and carers of specialist services, and primary care. The aim of this paper is to share our experiences from working in partnership with our PPIE contributors on the co-design work of the study. Illustrations of how the PPIE activities added crucial insights in the shaping of the tools are given alongside the research data from patients, carers and staff participants. We experienced some challenges during the project. We discuss how we managed to work together to create a supportive environment when unforeseen challenges emerged (such as, sudden bereavement). Our experiences of developing multiple components of PPIE work for this study demonstrates the importance of tailoring PPIE to suit different settings, and to complement people's strengths and capacity. It also shows the value of bringing diverse experiences together enabling a shared approach to co-design. Researchers and PPIE contributors wrote this paper jointly.

"Nobody Seems to Know Where to Even Turn To": Barriers in Accessing and Utilising Dementia Care Services in England and The Netherlands.

BACKGROUND: Accessing post-diagnostic care can be difficult for people with dementia and their informal carers. Little is known, however, about the determinants of barriers to access, and how these might vary between countries. The aim of this study was to explore potential inequalities in access to formal dementia care services between England and the Netherlands, specifically from more disadvantaged areas. METHODS: This was a mixed-methods study, involving semi-structured qualitative interviews and a carer questionnaire. People with dementia and informal carers were recruited by clinicians. The postal survey was co-produced with people with dementia, informal carers, and health care professionals. The survey asked carers about their own and their relatives with dementia's, social support service usage and financing; as well as how they were made aware of services and whether they required more support. Qualitative transcripts were analysed by two researchers in each country using thematic analysis. RESULTS: A total of 103 carer questionnaires were received by post and 13 interviews were conducted with people with dementia and family carers between January 2020 and April 2020. Many services were accessed via self-funding. Thematic analysis generated five core themes: Health literacy; Having faith and lack of faith; Service suitability; Structural issues surrounding service provision; and Financing care. One major difference between both country's systems of care were the case manager and network support which people with dementia and carers benefitted from in the Netherlands, which was rarely the case in the UK. CONCLUSIONS: People with dementia and informal carers need to be supported better in accessing formal dementia care services in both the UK and the Netherlands, whilst some learning can be taken to improve access.

More than a method: trusting relationships, productive tensions, and two-way learning as mechanisms of authentic co-production.

BACKGROUND: Knowledge mobilisation requires the effective elicitation and blending of different types of knowledge or ways of knowing, to produce hybrid knowledge outputs that are valuable to both knowledge producers (researchers) and knowledge users (health care stakeholders). Patients and service users are a neglected user group, and there is a need for transparent reporting and critical review of methods used to co-produce knowledge with patients. This study aimed to explore the potential of participatory codesign methods as a mechanism of supporting knowledge sharing, and to evaluate this from the perspective of both researchers and patients. METHODS: A knowledge mobilisation research project using participatory codesign workshops to explore patient involvement in using health data to improve services. To evaluate involvement in the project, multiple qualitative data sources were collected throughout, including a survey informed by the Generic Learning Outcomes framework, an evaluation focus group, and field notes. Analysis was a collective dialogic reflection on project processes and impacts, including comparing and contrasting the key issues from the researcher and contributor perspectives. RESULTS: Authentic involvement was seen as the result of "space to talk" and "space to change". "Space to talk" refers to creating space for shared dialogue, including space for tension and disagreement, and recognising contributor and researcher expertise as equally valuable to the discussion. 'Space to change' refers to space to adapt in response to contributor feedback. These were partly facilitated by the use of codesign methods which emphasise visual and iterative working, but contributors emphasised that relational openness was more crucial, and that this needed to apply to the study overall (specifically, how contributors were reimbursed as a demonstration of how their input was valued) to build trust, not just to processes within the workshops. CONCLUSIONS: Specific methods used within involvement are only one component of effective involvement practice. The relationship between researcher and contributors, and particularly researcher willingness to change their approach in response to feedback, were considered most important by contributors. Productive tension was emphasised as a key mechanism in leading to genuinely hybrid outputs that combined contributor insight and experience with academic knowledge and understanding.

We conducted a study exploring how patients could be involved in improving services using health data. This paper reports on the evaluation of that study. We collected different kinds of feedback throughout, including a survey of impacts on contributors, a focus group to reflect on what worked well and what could be done better, and also sharing thoughts throughout the study itself. We analysed this feedback together, to make sure that both contributor and researcher perspectives were considered equally.We found that the successful co-production that happened during the study was the result of having 'space to talk' and 'space to change'. Space to talk that meant we all shared our views and recognised each other as experts bringing equally important knowledge. Space to change meant that we acted on the knowledge shared, to change both the study and to change how we worked together.We found that these themes occurred at multiple levels. They were partly achieved by the specific participatory codesign methods that were used, but equally or perhaps more important was the trusting relationship between the researcher and contributors, including openness to explore tensions. The wider systems that supported involvement, in this case the financial reimbursement for contributor time, were also as important to this as the things that happened within the study itself.We recommend that future work creates 'space to talk' and 'space to change', and reports openly on how both contributors and researchers are affected by this.

What makes primary care effective for people in poverty living with multiple chronic conditions?: study protocol.

BACKGROUND: The inverse care law persists: people living in poverty have the greatest needs and face considerable challenges in getting the care they need. Evidence reveals that GPs encounter difficulties in delivering care to poor patients, while many of those patients feel stigmatized by healthcare professionals. Patients living in poverty report negative healthcare experiences and unmet healthcare needs. Indeed, there is a growing recognition in primary care research of the importance of addressing the capabilities and social conditions of the poor when delivering care. Few studies have looked at the factors contributing to effective and "socially responsive" care for people living in poverty. METHODS/DESIGN: Our study adopts a qualitative ethnographic approach in four healthcare organizations in deprived areas of metropolitan Montreal (Québec, Canada), using patient shadowing techniques and interviews. Data will be collected through fieldwork observations and informal interviews with patients before and after consultations. We will observe medical consultations, care organization activities, and waiting areas and reception of patients. We will conduct a total of 36 individual interviews with 12 GPs and 24 patients. The interviews will be audio-recorded and transcribed for purposes of analysis. The analysis consists of debriefing sessions, coding and interpretive analysis. DISCUSSION: This study aims to investigate how positive healthcare interactions between physicians and patients can improve the management of chronic conditions. We hypothesize that factors related to care organization, to healthcare professionals' experience and to patients may enhance the quality of healthcare interactions, which may have positive impacts for preventing and managing chronic conditions. Our study will provide a unique set of data grounded in the perspectives of healthcare professionals and of patients living in poverty.

Physicians' social competence in the provision of care to persons living in poverty: research protocol.

BACKGROUND: The quality of the physician-patient therapeutic relationship is a key factor in the effectiveness of care. Unfortunately, physicians and people living in poverty inhabit very different social milieux, and this great social distance hinders the development of a therapeutic alliance. Social competence is a process based on knowledge, skills and attitudes that support effective interaction between the physician and patient despite the intervening social distance. It enables physicians to better understand their patients' living conditions and to adapt care to patients' needs and abilities. METHODS/DESIGN: This qualitative research is based on a comprehensive design using in-depth semi-structured interviews with 25 general practitioners working with low-income patients in Montreal's metropolitan area (Québec, Canada). Physicians will be recruited based on two criteria: they provide care to low-income patients with at least one chronic illness, and are identified by their peers as having expertise in providing care to a poor population. For this recruitment, we will draw upon contacts we have made in another research study (Loignon et al., 2009) involving clinics located in poor neighbourhoods. That study will include in-clinic observations and interviews with physicians, both of which will help us identify physicians who have developed skills for treating low-income patients. We will also use the snowball sampling technique, asking participants to refer us to other physicians who meet our inclusion criteria. The semi-structured interviews, of 60 to 90 minutes each, will be recorded and transcribed. Our techniques for ensuring internal validity will include data analysis of transcribed interviews, indexation and reduction of data with software qualitative analysis, and development and validation of interpretations. DISCUSSION: This research project will allow us to identify the dimensions of the social competence process that helps physicians establish therapeutic relationships with low-income patients living with chronic illness. This study will also offer concrete recommendations for improving health interventions among low-income patients and for helping them to better manage their chronic illnesses. Ultimately, our aim is to strengthen the capacity of the health care system and of professionals to provide care that is adapted to the social conditions of people living in poverty.

The wounding path to becoming healers: medical students' apprenticeship experiences.

BACKGROUND: This article responds to repeated calls in the literature to teach medical students how to treat the whole patient, not just the disease. It focuses on the educational experiences of medical students in a Canadian university in an effort to clarify the determinants of "caring" in medical education. METHOD: Nineteen (19) second-year medical students volunteered to keep weekly journal entries during the first five months of their medical apprenticeship. In journal entry analyses, the authors identified themes through a consensus-building coding process detailed in the work of Maykut and Morehouse (1994) and Huckin (2004). For this article, the authors focus on those themes most closely related to the students' caring experiences during their apprenticeship. RESULTS: The data highlight components of the medical system which made it difficult for students to engage in caring practices during their apprenticeship: the competing discourses of empathy and efficiency, the objectification of patients, the power of the medical hierarchy, and the institutionalized practice of wounding. CONCLUSION: The authors argue that returning medical care and students' experience to a balance of attention to curing and caring is a complex undertaking requiring a re-conceptualization of the process and goals of medical care.

Hedonic contrast and condensation: good stimuli make mediocre stimuli less good and less different.

Loud sounds make soft sounds softer (contrast) and also make them less discriminable (which we call condensation). We report on parallel phenomena in hedonics: Good stimuli reduce the pleasantness of less good stimuli, and also reduce people's preferences among the less good stimuli. In Experiment 1, subjects rated the pleasantness of fruit juices diluted to approximate hedonic neutrality. Subjects who had just previously drunk and rated some good-tasting full-strength juices rated thediluted juices lower than did subjects who had not (hedonic contrast). In Experiment 2, subjects drank pairs of diluted juices and rated their preference for one juice over the other. Subjects who had just previously drunk and rated pairs of full-strength juices gave lower preference ratings between the diluted juices than did subjects who had not (condensation). Thus the same stimulus set produced contrast in Experiment 1 and condensation in Experiment 2, paralleling results in loudness.

Fragmented care and whole-person illness: Decision-making for people with chronic end-stage kidney disease.

PURPOSE: The study reported herein sought to better understand how patients with multi-morbid, chronic illness-who receive care in institutions designed for treatment of acute illness-experience and engage in health-related decisions. METHODS: In an urban Canadian teaching hospital, we studied the interactions of six hemodialysis patients and 11 of the health professionals involved in their care. For 1 year (September 2009 to September 2010), we conducted ethnographic observation and interviews of six cases each comprising one hemodialysis patient and various health professionals including medical specialists, nurses, a social worker, and a dietician. RESULTS: We found that the ubiquity and complexity of health-related decision-making in the lives of these patients suggests the need for a more holistic interpretation of health-related decision-making. DISCUSSION: We propose an interpretation of decision-making as an ongoing process of integrating illness and life; as frequently open-ended, cumulative, and relational; and as fundamentally shaped by the fragmented delivery of care for patients with multiple morbidities. CONCLUSION: Our understanding of decision-making suggests that people living with complex chronic illness need to receive care from institutions that recognize and address their multi-morbidity as a whole illness that is constantly being integrated into the life of a whole person.

OA8†Caring for the family caregiver: working with volunteers to implement and improve a service to enable family caregivers to maintain their own wellbeing.

BACKGROUND: Family caregivers suffer physically, mentally, and spiritually. Community volunteers play an important role in supporting patients at the end of life or former caregivers in bereavement. However, there are no research reports of volunteer services focused on maintaining the wellbeing of end-of-life caregivers. AIM: To have volunteers, a hired volunteer coordinator, health care providers, and researchers implement and formatively evaluate a volunteer service to enable family caregivers to maintain their well being while providing care and subsequent bereavement. This presentation will focus on the volunteers' roles with the project as both agents of change to the service and as support for the caregivers. METHOD: A qualitative formative evaluation informed by Guba and Lincoln's Fourth Generation Evaluation (1989) participatory design was conducted. Data was collected through individual interviews, focus groups, participant observation during volunteer support meetings, and through volunteers' written reflections. RESULTS: Amongst the volunteers, volunteer coordinator, and principal investigator, there was mutual respect for and interest in learning about everyone's roles and experiences in the project. The experience was rewarding because they felt they helped the family caregiver and enjoyed developing and improving the service and working in a supportive team. Volunteers' challenges included being nervous for their first meeting with a caregiver, and frustration with some rules put in place to protect them (e.g. not helping the caregiver with direct care for the patient). CONCLUSION: Volunteers can be an effective part of the research team, while providing valuable support and encouragement for family caregivers to maintain their own wellbeing.

'Non-compliance' as illness management: Hemodialysis patients' descriptions of adversarial patient-clinician interactions.

With only 50% of patients in developed countries following the therapies prescribed for them by health professionals, "non-compliance" is commonly described as causing increases in morbidity, hospital visits, and overall healthcare costs. A plethora of non-compliance studies have failed to identify consistent predictors for, or solutions to, patients' non-compliance. Our longitudinal (September 2006-September 2008) participatory action research (PAR) focused on (a) understanding hemodialysis patients' perspectives on the challenges and solutions to living well with their chronic illness and (b) taking action to improve this population's quality of life. The study's participants included seven purposefully sampled patients in two hospital hemodialysis units in Canada. A small sample size was essential to accommodate our commitment to conducting a PAR study with this patient population whose unpredictable health status presented significant challenges to recruitment, follow-up interviews, and participation in data analysis. Data collection and analysis over 2 years included over 100 h of ethnographic field observation, bi-weekly unrecorded and 12 audio-recorded in-dialysis interviews, five video-recorded life-history interviews, two video-recorded focus groups, and five video-recorded dialysis treatment sessions. Thematic content analysis drew attention to patients' descriptions of adversarial interactions with health professionals. In these interactions, three points of tension were identified: (a) between whole person care and "assembly line" treatment, (b) between patient knowledge and medical expertise, and (c) between shared decision-making and "digging to find out". The article concludes that these adversarial relationships are indicative of a lack of trust stemming from health professionals' failure to interact with patients as whole persons with unique expertise on their bodies, their experience of illness, and their lives.