Life participation in parents of children with chronic kidney disease

Background The caregiver burden among parents of children with CKD is high and can impair their life participation, which may in turn have negative consequences on their children's care and outcomes. We aim to describe effects on the life participation in parents of children with CKD, from the perspectives of their children, health professionals, and their own. Methods We thematically analyzed data from the Standardised Outcomes in Nephrology – Children and Adolescents Initiative (SONG-Kids) life participation workshops involving children with childhood CKD, parents/caregivers, and health professionals, for content related to perspectives on life participation among parents of children with CKD. Results Four international consensus workshops were conducted (one in-person in English language and three online - two in English and one in Spanish) with 171 participants including 79 patients and parents/caregivers and 92 health professionals from 16 countries. Four themes were identified: health priorities undermining ability to participate in activities and socialise; medical responsibilities conflicting with the nurturing parental role; impeding ability to work; and measuring and addressing life participation in parents of children with CKD. Conclusion Managing parental and disease-related responsibilities can impair life participation in parents of children with CKD, particularly in the areas of work and social activities. Strategies to identify and address parental life participation appear to be needed, which may include interventions to alleviate caregiver burden and distress.