Family Members’ Experiences With Dialysis and Kidney Transplantation

Abstract

Rationale & Objective Understanding whether family members’ experiences with patients’ treatment for end-stage kidney disease (ESKD) were expected could guide the development of family-centered interventions that enhance the preparedness of patients and their care partners for kidney replacement therapies. We explored unexpected negative experiences with ESKD treatments among family members of dialysis and posttransplantation patients to identify meaningful directions for family-centered research and clinical care. Study Design Qualitative study. Setting & Participants 8 focus groups comprising 49 family members of dialysis patients and living donor kidney transplant recipients undergoing medical care in Baltimore, MD. Analytical Approach Focus groups were stratified by patients’ treatment (in-center hemodialysis, home hemodialysis, peritoneal dialysis, or living donor kidney transplantation) and family members’ self-reported race (African American vs non–African American), resulting in 2 groups per treatment experience. Inductive thematic analysis was used to identify themes in focus group transcripts. Themes shared across different treatment groups were highlighted to provide insight into common experiences. Results We identified 4 themes that described family members’ unexpected negative treatment experiences: becoming a care partner (unanticipated responsibilities and sleep disruptions), adverse psychological treatment responses in patients (eg, depression) and family members (eg, anxiety), treatment delivery and logistics (insufficient information, medication regimen, and logistical inconveniences), and patient morbidity (dialysis-related health problems and fatigue). All themes were relevant to discussions in the in-center hemodialysis, peritoneal dialysis, and transplantation groups, whereas psychological responses and morbidity themes did not reflect discussions in home hemodialysis groups. Limitations Data collection occurred from 2008 to 2009; family members were recruited through patients undergoing care in 1 geographic area; 1 family member participant per patient. Conclusions Family members described a broad range of unexpected negative experiences with ESKD treatments. Efforts to prepare families for ESKD treatments through more family-centered care, early and tailored education, and interventions targeting care partner preparedness, health provider–family member communication, and relationship dynamics in family member–patient dyads are needed.

Perceptions of patients with end-stage kidney disease (ESKD) and their informal caregivers on palliative care as a treatment option: a qualitative study

“…The support of informal caregivers is instrumental in decisions regarding the treatment of patients with ESKD [52,53]. Indeed, informal caregivers of patients with ESKD have their usual routines disrupted in many unexpected ways as a result of the disease, including having to accompany them to the renal centre and dealing with untoward psychological responses of patients to the disease and its treatment such as depression [53].…”

“…The support of informal caregivers is instrumental in decisions regarding the treatment of patients with ESKD [52,53]. Indeed, informal caregivers of patients with ESKD have their usual routines disrupted in many unexpected ways as a result of the disease, including having to accompany them to the renal centre and dealing with untoward psychological responses of patients to the disease and its treatment such as depression [53]. Yet, informal caregivers, sometimes, pressurise patients with ESKD to initiate and sustain RRT, with the belief that patients could get better with time, especially when patients are relatively young [25,54].…”

Home Dialysis in the United States: A Roadmap for Increasing Peritoneal Dialysis Utilization

“…Among populations with greater socioeconomic disadvantages, kidney failure remains an outsized burden, and this disparity is further seen in the relative rates of home dialysis uptake. 13 Factors such as poverty, housing instability, care partner limitations, lack of storage space, and low health literacy present real challenges to home dialysis use, 14 and there may also be provider biases around patients' capacity for learning PD. Some of these factors may be overcome by proactively providing assistance, especially in the early period after PD initiation.…”

Perceptions of patients with end-stage kidney disease (ESKD) and their informal caregivers on palliative care as a treatment option: a qualitative study

“…The support of informal caregivers is instrumental in decisions regarding the treatment of patients with ESKD (49,50). Indeed, informal caregivers of patients with ESKD have their usual routines disrupted in many unexpected ways as a result of the disease, including having to accompany them to the renal centre and dealing with untoward psychological responses of patients to the disease and its treatment such as depression (50).…”

“…The support of informal caregivers is instrumental in decisions regarding the treatment of patients with ESKD (49,50). Indeed, informal caregivers of patients with ESKD have their usual routines disrupted in many unexpected ways as a result of the disease, including having to accompany them to the renal centre and dealing with untoward psychological responses of patients to the disease and its treatment such as depression (50). Yet, informal caregivers, sometimes, pressurise patients with ESKD to initiate and sustain RRT, with the belief that patients could get better with time, especially when patients are relatively young (23,51).…”