Caregiver Perspectives on Family Psychosocial Risks and Resiliencies in Pediatric Sickle Cell Disease: Informing the Adaptation of the Psychosocial Assessment Tool

Abstract

There were 2 related objectives of this qualitative study focused on caregivers of children with sickle cell disease (SCD): (1) to assess caregiver perspectives on the acceptability and utility of the Psychosocial Assessment Tool (PAT) as a screener of family psychosocial risk in pediatric SCD and (2) to examine caregiver perspectives on psychosocial risk factors, as well as their resiliencies and coping strategies, to help inform possible modifications to the PAT. Caregivers (n = 43) of youth with SCD completed the PAT to assess feasibility of administration and a subset (n = 22) completed a qualitative interview organized around principles of cognitive interviewing for instrument validation. Constant comparative analyses involved coding interviews, organizing coding categories into themes, and systematically reintegrating themes regarding caregiver perspectives. Caregivers had positive reactions to the PAT, including its ability to broadly assess risk factors, potential utility in helping connect families to resources, and the brevity and ease of completion. Caregivers described salient family stressors as well as adaptive coping strategies that generally aligned well with areas assessed by the PAT, and also provided feedback that can help inform modification of the PAT to better fit the SCD population. Families of youth with SCD face significant psychosocial stressors but demonstrate resiliency in using adaptive coping strategies. Study results support the continuing development of the PAT as a family psychosocial risk screener in pediatric SCD that can enhance the delivery of evidence-based care and reduce health disparities.