Caregiver Experience in Pediatric Dialysis.

BACKGROUND AND OBJECTIVES: Pediatric dialysis is thought to be burdensome on caregivers given their need to assume dual responsibilities of parental and medical management of their child's chronic illness. In this study, we seek to describe the experience of parental caregivers of children receiving chronic dialysis for end-stage kidney disease. METHODS: We performed semistructured interviews of primary caregivers of children with end-stage kidney disease receiving chronic peritoneal dialysis or hemodialysis for at least 8 weeks from March 2016 to April 2017 at 3 pediatric dialysis centers in the United States. We performed a thematic analysis to inductively derive and identify themes and subthemes related to positive and negative caregiver experiences. RESULTS: Thirty-five caregivers completed interviews. Four major themes were identified, each with several subthemes: (1) caregiver medicalization (subthemes: diagnosis and initiation, disease management, and the future), (2) emotional adjustment (initial and/or acute phase, acceptance, personal growth, and medical stress and psychological burden), (3) pragmatic adaptation (disruption, adaptation of life goals and/or sense of self, and financial impact), and (4) social adjustment (relationship opportunity, relationship risk, advocacy, family functioning, and intimate relationships). These themes and subthemes reflected a broad range of experiences from positive to severely burdensome. CONCLUSIONS: Caregivers of patients on dialysis report a broad range of positive and burdensome experiences. These results reveal a need for continued advocacy to support families with a child on dialysis and can be used to develop targeted measures to study and improve caregiver experience in this population.

Quality of Life Intervention Planning: Pilot Study in Youth with Kidney Failure Who Are on Dialysis.

This pilot study assessed the feasibility and acceptability of a new quality of life (QOL) assessment and intervention methodology (AIM) for youth on dialysis and their caregivers. Thirty-nine patients and their caregivers participated in the QOL AIM, which incorporates patient-centered care practices to identify needs, choose interventions, and evaluate impact on QOL functioning. Participants found the QOL AIM to be feasible and acceptable, and were overall satisfied with perceived improvement in patient QOL functioning. The QOL AIM shows promise for QOL intervention planning.

Health-related quality of life functioning over a 2-year period in children with end-stage renal disease.

BACKGROUND: Optimal care of the pediatric chronic kidney disease/end stage renal disease (CKD/ESRD) patient must now incorporate health-related quality of life (HRQOL) assessment and management. METHODS: This study reports the first data on longitudinal change in global (PedsQL(TM)4.0) and disease-specific (PedsQL(TM)3.0 ESRD Module) HRQOL pediatric ESRD patient and proxy ratings over four assessment periods spanning approximately a 2-year period. General linear mixed modeling was used to analyze associations between patient demographics, medical variables, and patient and proxy HRQOL scores. RESULTS: Self-reported and/or proxy data were available for at least two time-points for 53 patients (age 2-18 years; 60 % male), of whom 27 were receiving in-center hemodialysis. CONCLUSIONS: Patient ratings on global health and physical activity, emotional, and social and disease-specific worry and communication domains were higher (i.e., better) than parent-proxy ratings, confirming the importance of obtaining both sources of information. Patients on dialysis longer, particularly females, reported worse emotional functioning; females also reported more physical appearance concerns. Parents rated older children and those on dialysis longer as functioning worse on multiple global and disease-specific (e.g., fatigue, relationship) domains. Parents also rated children as functioning increasingly worse in school over time. Further, patient ESRD history (acute onset vs. medically managed) impacted how parents viewed the burden of ESRD on their child over time.

Medical traumatic stress symptoms in pediatric patients on dialysis and their caregivers: a pilot study.

Research demonstrates that children undergoing burdensome and invasive treatments and their caregivers may experience medical traumatic stress. Pediatric patients on dialysis and caregivers were screened for medical traumatic stress using a modified version of a commonly used trauma symptom checklist. Many patients and caregivers indicated initiating dialysis was a traumatic experience. These preliminary findings underscore important, but often overlooked, patient and family experiences and offer the opportunity to enhance patient care and outcomes.