Examining the roles and experiences of fathers of children with chronic kidney disease

Abstract

This study examined roles and experiences of fathers of children with chronic kidney disease (CKD). Based on interpretive description, semistructured interviews were conducted with 22 fathers of children receiving a range of treatments (transplant, peritoneal dialysis, hemodialysis, and CKD not requiring renal replacement therapy). Fathers described various experiences and means of adjusting to shifts associated with pediatric CKD. These included loss of personal control, a sense of personal isolation, and a stance of remaining strong amidst personal suffering. Nuanced differences according to modality of CKD care were identified. Fathers engaged in strategies that fostered coping, such as remaining positive and taking charge. They conveyed deep love for their child, and demonstrated ingenuity and persistence in care. Few resources of support were accessed by fathers. Study recommendations invite holistic approaches to health care, with improved resources for families— including fathers—in addressing the needs of this population.