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Background: Peritoneal dialysis (PD) can offer patients more autonomy and flexibility compared with in-center hemodialysis (HD). However, burnout – defined as mental, emotional, or physical exhaustion that leads to thoughts of discontinuing PD – is associated with an increased risk of transfer to HD. We aimed to describe the perspectives of burnout among patients on PD and their caregivers. Methods: In this focus group study, 81 patients and 45 caregivers participated in 14 focus groups from 9 dialysis units in Australia, Hong Kong, and the United States. Transcripts were analyzed thematically. Results: We identified two themes. Suffering an unrelenting responsibility contributed to burnout, as patients and caregivers felt overwhelmed by the daily regimen, perceived their life to be coming to a halt, tolerated the PD regimen for survival, and had to bear the burden and uncertainty of what to expect from PD alone. Adapting and building resilience against burnout encompassed establishing a new normal, drawing inspiration and support from family, relying on faith and hope for motivation, and finding meaning in other activities. Conclusions: For patients on PD and their caregivers, burnout was intensified by perceiving PD as an unrelenting, isolating responsibility that they had no choice but to endure, even if it held them back from doing other activities in life. More emphasis on developing strategies to adapt and build resilience could prevent or minimize burnout.

Background Dialysis care often focuses on outcomes that are of lesser importance to patients than to clinicians. There is growing international interest in individualizing care based on patient priorities, but evidence-based approaches are lacking. The objective of this study was to develop a person-centered dialysis care planning program. To achieve this objective we performed qualitative interviews, responsively developed a novel care planning program and then assessed program content and burden. Methods We conducted 25 concept elicitation interviews with US hemodialysis patients, care partners and care providers, using thematic analysis to analyze transcripts. Interview findings and interdisciplinary stakeholder panel input informed the development of a new care planning program, My Dialysis Plan. We then conducted 19 cognitive debriefing interviews with patients, care partners and care providers to assess the program’s content and face validities, comprehensibility and burden. Results We identified five themes in concept elicitation interviews: feeling boxed in by the system, navigating dual lives, acknowledging an evolving identity, respecting the individual as a whole person and increasing individualization to enhance care. We then developed a person-centered care planning program and supporting materials that underwent 32 stakeholder-informed iterations. Data from subsequent cognitive interviews led to program revisions intended to improve contextualization and understanding, decrease burden and facilitate implementation. Conclusions My Dialysis Plan is a content-valid, person-centered dialysis care planning program that aims to promote care individualization. Investigation of the program’s capacity to improve patient experiences and outcomes is needed.

Background Individuals on hemodialysis bear substantial symptom burdens, but providers often underappreciate patient symptoms. In general, standardized, patient-reported symptom data are not captured during routine dialysis care. We undertook this study to better understand patient experiences with symptoms and symptom reporting. In exploratory interviews, we sought to describe hemodialysis nurse and patient care technician perspectives on symptoms and symptom reporting. Methods We conducted semi-structured interviews with 42 US hemodialysis patients and 13 hemodialysis clinic personnel. Interviews were conducted between February and October 2017 and were analyzed using thematic analysis. Results Seven themes were identified in patient interviews: (i) symptoms engendering symptoms, (ii) resignation that life is dependent on a machine, (iii) experiencing the life intrusiveness of dialysis, (iv) developing adaptive coping strategies, (v) creating a personal symptom narrative, (vi) negotiating loss of control and (vii) encountering the limits of the dialysis delivery system. Overall, patient symptom experiences and perceptions appeared to influence symptom-reporting tendencies, leading some patients to communicate proactively about symptoms, but others to endure silently all but the most severe symptoms. Three themes were identified in exploratory clinic personnel interviews: (i) searching for symptom explanations, (ii) facing the limits of their roles and (iii) encountering the limits of the dialysis delivery system. In contrast to patients, clinic personnel generally believed that most patients were inclined to spontaneously report their symptoms to providers. Conclusions Interviews with patients and dialysis clinic personnel suggest that symptom reporting is highly variable and likely influenced by many personal, treatment and environmental factors.