Parental perspectives on family-centered care in pediatric neurology: An explanatory sequential mixed-methods study.

Abstract

Aim: To explore parents' experiences of family-centered care (FCC) in a pediatric neurology clinic.

Method: In this explanatory sequential mixed-methods study, parents of children with neurological conditions completed the Measure of Processes of Care (MPOC-20) and the Pediatric Quality of Life (PedsQL) surveys. Linear regression analysis was used to explore associations between MPOC, PedsQL scores, and demographic variables. Through an interpretive description framework, semi-structured interviews were conducted with a subset of parents to develop a deeper understanding of parental experiences and were analyzed using a phronetic iterative approach.

Results: Parents rated the MPOC-20 domains 'respectful and supportive care' the highest and 'providing general information' the lowest (n = 69). Child's age and parents' marital status were predictive of lower 'providing general information' and 'specific information' scores; and child's age, area of residence, and the number of additional services were predictive of lower total, emotional, and social PedsQL scores. A conceptual framework highlighting the parents' role in their child's healthcare experiences was developed on the basis of interview findings.

Interpretation: This study demonstrates the need to improve FCC (providing general and specific information about the child's condition) and to encourage partnerships between parents and healthcare providers. Involving genetic counsellors in care teams facilitates information sharing, shared decision-making, communication, and the provision of support resources.