Effective peer-to-peer support for young people with end-stage renal disease: a mixed methods evaluation of Camp COOL

__Abstract__ __Background__ The Camp COOL programme aims to help young Dutch people with end-stage renal disease (ESRD) develop self-management skills. Fellow patients already treated in adult care (hereafter referred to as ‘buddies’) organise the day-to-day program, run the camp, counsel the attendees, and also participate in the activities. The attendees are young people who still have to transfer to adult care. This study aimed to explore the effects of this specific form of peer-to-peer support on the self-management of young people (16–25 years) with ESRD who participated in Camp COOL (CC) (hereafter referred to as ‘participants’). __Methods__ A mixed methods research design was employed. Semi-structured interviews (n = 19) with initiators/staff, participants, and healthcare professionals were conducted. These were combined with retrospective and pre-post surveys among participants (n = 62), and observations during two camp weeks. __Results__ Self-reported effects of participants were: increased self-confidence, more disease-related knowledge, feeling capable of being more responsible and open towards others, and daring to stand up for yourself. According to participants, being a buddy or having one positively affected them. Self-efficacy of attendees and independence of buddies increased, while attendees’ sense of social inclusion decreased (measured as domains of health-related quality of life). The buddy role was a pro-active combination of being supervisor, advisor, and leader. __Conclusions__ Camp COOL allowed young people to support each other in adjusting to everyday life with ESRD. Participating in the camp positively influenced self-management in this group. Peerto- peer support through buddies was much appreciated. Support from young adults was not only beneficial for adolescent attendees, but also for young adult buddies. Paediatric nephrologists are encouraged to refer patients to CC and to facilitate such initiatives. Together with nephrologists in adult care, they could take on a role in selecting buddies

Questioning patient engagement: research scientists’ perceptions of the challenges of patient engagement in a cardiovascular research network

Sandra L Carroll,1 Gayathri Embuldeniya,1 Julia Abelson,2 Michael McGillion,1 Alexandre Berkesse,3 Jeff S Healey4 1Faculty of Health Sciences, School of Nursing, McMaster University, Hamilton, ON, 2Faculty of Health Sciences, Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, ON, 3Faculty of Medicine, University of Montreal, Montreal, QC, 4Faculty of Health Sciences, Department of Medicine, McMaster University, Hamilton, ON, Canada Background: Patient engagement in research is a dominant discourse in clinical research settings as it is seen as a move toward sustainable and equitable health care systems. In Canada, a key driver is the Strategy for Patient-Oriented Research of the Canadian Institutes of Health Research, which asserts that meaningful patient engagement can only be fostered when stakeholders understand its value. This study assessed researchers’ perceptions of the meaning and value of patient engagement in research within a Canadian cardiovascular research network. In doing so, the secondary aim was to inform the development of a structured patient engagement initiative by identifying potential challenges and related mitigation strategies.Methods: We employed a multi-method strategy involving electronic surveys and semi-structured telephone interviews with network research scientists across Canada. Interview data were analyzed using thematic and content analysis. Survey data were analyzed using descriptive statistics.Results: Thirty-eight electronic surveys (response rate =33%) and 16 interviews were completed with network members. Some participants were uncertain about the meaning and value of patient engagement. While voicing guarded support, four challenges relating to patient engagement were identified from the interviews: 1) identification of representative and appropriate patients, 2) uncertainty about the scope of patients’ roles given concerns about knowledge discrepancies, 3) a perceived lack of evidence of the impact of patient engagement, and 4) the need for education and culture change as a prerequisite for patient engagement. Research scientists were largely concerned that patients untrained in science and tasked with conveying an authentic patient experience and being a conduit for the voices of others might unsettle a traditional model of conducting research.Conclusion: Concerns about patient involvement in research were related to a lack of clarity about the meaning, process, and impact of involvement. This study highlights the need for education on the meaning of patient engagement, evidence of its impact, and guidance on practical aspects of implementation within this research community. Keywords: patient oriented research, health policy, medical culture, patient-centered care, strok

“I don’t know exactly what you’re referring to”: the challenge of values elicitation in decision making for implantable cardioverter-defibrillators

Sandra L Carroll,1–3 Gayathri Embuldeniya,3 Jasprit Pannag,1 Krystina B Lewis,4 Jeff S Healey,2,3,5 Michael McGillion,1,2 Lehana Thabane,2,6,7 Dawn Stacey4,8 1School of Nursing, McMaster University, Hamilton, ON, Canada; 2Population Health Research Institute, Hamilton Health Sciences, Hamilton, ON, Canada; 3Hamilton Health Sciences, Hamilton, ON, Canada; 4School of Nursing, University of Ottawa, Ottawa, ON, Canada; 5Department of Medicine, McMaster University, Hamilton, ON, Canada; 6Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton, ON, Canada; 7Biostatistics Unit, St. Joseph’s Healthcare, Hamilton, ON, Canada; 8Ottawa Hospital Research Institute, Ottawa, ON, Canada Purpose: Patients’ values are a key component of patient-centered care and shared decision making in health care organizations. There is limited understanding on how patients’ values guide their health related decision making or how patients understand the concept of values during these processes. This study investigated patients’ understanding of their values in the context of considering the risks/benefits of receiving an implantable cardioverter-defibrillator (ICD). Patients and methods: A qualitative substudy was conducted within a feasibility trial with first-time ICD candidates randomized to receive a patient decision aid or usual care prior to specialist consultation. Semi-structured interviews were conducted with participants post-implantation or post-specialist consultation. Results: Sixteen patients (ten male) aged 47–87 years participated. Of these, ten (62.5%) received the patient decision aid prior to specialist consultation. Findings revealed patients were confused by the word “values” and had difficulty expressing values related to risks/benefits during ICD decision making. When probed, values were conceptualized broadly capturing other factors such as desire to live, good quality of life, family’s views, ICD information, control over decision, and medical authority. Conclusion: This study revealed the difficulty patients considering an ICD had with articulating their values in the context of an ICD health decision and highlighted the challenge to effectively elicit patients’ values within health decisions overall. It is suggested that there should be a shift away from the use of the word “values” when speaking directly to patients toward language such as “what matters to you the most” or “what is most important to you”. Keywords: values, patient preferences, patient engagement, qualitative, health decisio

Mechanisms, contexts and points of contention: operationalizing realist-informed research for complex health interventions

Abstract Background The concept of “mechanism” is central to realist approaches to research, yet research teams struggle to operationalize and apply the concept in empirical research. Our large, interdisciplinary research team has also experienced challenges in making the concept useful in our study of the implementation of models of integrated community-based primary health care (ICBPHC) in three international jurisdictions (Ontario and Quebec in Canada, and in New Zealand). Methods In this paper we summarize definitions of mechanism found in realist methodological literature, and report an empirical example of a realist analysis of the implementation ICBPHC. Results We use our empirical example to illustrate two points. First, the distinction between contexts and mechanisms might ultimately be arbitrary, with more distally located mechanisms becoming contexts as research teams focus their analytic attention more proximally to the outcome of interest. Second, the relationships between mechanisms, human reasoning, and human agency need to be considered in greater detail to inform realist-informed analysis; understanding these relationships is fundamental to understanding the ways in which mechanisms operate through individuals and groups to effect the outcomes of complex health interventions. Conclusions We conclude our paper with reflections on human agency and outline the implications of our analysis for realist research and realist evaluation