Psychosocial considerations and recommendations for care of pediatric patients on dialysis.

Dialysis treatment has evolved to enable children to live longer and transition to adulthood. Thus, the focus of care shifts to a consideration of pediatric patients' quality of life and psychosocial functioning across childhood, adolescence, and young adulthood. Despite well-documented concerns in various domains (including depression/anxiety, self-esteem and social functioning, behavior problems, and academic and cognitive functioning), limited literature exists regarding psychosocial guidelines for children and adolescents undergoing dialysis. This article aims to address this gap by providing a review of the pediatric literature examining psychosocial functioning in patients treated with dialysis, as well as recommendations for specific psychosocial concerns. Overall recommendations for care include screening for anxiety and depression, referral to pediatric psychologists for evidence-based intervention, utilization of child life specialists, opportunities to promote social functioning, neuropsychological evaluation and school programming, ongoing support in preparing for transition to adult care, and periodic measure of quality of life. Together, these suggestions promote a holistic approach to patient-centered care by supporting both physical and psychosocial well-being.

Use of Creative Writing to Illustrate Lived Experiences in Hemodialysis-Dependent Children with Chronic Kidney Failure.

Pediatric kidney failure is a relatively rare but devastating medical condition associated with a high degree of disease-related burden, but little is known about children's lived experiences. Finding ways to better understand their experiences can lead to improvement in direct patient care, health-related quality of life (HRQoL), and long-term functioning. Arts in Health (AIH) may be one means of understanding children's lived experiences. A retrospective review of a creative, writing-based AIH project by pediatric patients on hemodialysis was conducted. A qualitative directed-content analysis identified five main themes, including physical shackle, feeling mental and emotional distress, relying on a hemodialysis machine, dealing with problems, and feeling different. This study elucidates the lived experiences of children with chronic kidney failure by validating patients' experiences and highlighting their resilience.

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.