Supporting the Family System for Children with Kidney Disease

Caregivers and siblings of children with kidney disease face unique trials. Caregiver challenges exist at the intrapersonal level (e.g., mental health conditions, fatigue, loss of freedom), the interpersonal level (e.g., conflicts, disruptions in family routines), and the external level (e.g., practical needs, responsibilities, and logistics). Caregiver experiences vary based on disease stage, with the diagnosis/predialysis phase characterized by shock, distress, and confusion; the renal replacement stage characterized by restrictions, logistical challenges, and increased responsibilities; and the posttransplant stage characterized by fear of rejection, struggles with medication adherence, and opportunities for post-traumatic growth. Sibling challenges in the family functioning, relationships, and well-being spheres include routine disruptions, family conflicts, anxiety, jealousy, and feelings of being overlooked. Social determinants of health related to family characteristics and access to care and resources impact families of children with CKD, with caregiver health literacy of particular concern. Interventions for caregivers (such as psychotherapy, surgical preparation strategies, Web-based support groups, and respite care) and siblings (such as involvement in care planning, information-sharing approaches, and support groups/camps) provide opportunities for improved functioning of the family system. Shared decision-making and family-centered approaches to care can be helpful tools for providers working with families in clinical settings.