Life Participation in Parents of Children With CKD.

BACKGROUND

The caregiver burden among parents of children with chronic kidney disease (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 life participation in parents of children with CKD, from the perspectives of their children, health professionals, and the parents themselves.

METHODS

We thematically analyzed data from the Standardized Outcomes in Nephrology-Children and Adolescents Initiative (SONG-Kids) life participation workshops involving children with childhood CKD, parents or caregivers, and health professionals, for content related to perspectives on life participation among parents of children with CKD.

RESULTS

A total of 4 international consensus workshops were conducted (1 in-person in English and 3 online-2 in English and 1 in Spanish) with 171 participants, including 79 patients and parents or caregivers and 92 health professionals from 16 countries. Overall, 4 themes were identified-health priorities undermining ability to participate in activities and socialize; 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.