Family-centered assessment and function for children with chronic mechanical respiratory support

Introduction: The purpose of this study was to assess health-related quality of life (HRQL) when managing severe, chronic respiratory insufficiency (CRI) at home.

Methods: Families enrolled in a comprehensive program for CRI completed the Child Health Ratings Inventories with (a) parent-proxy ratings of the child's HRQL and (b) the parent's own HRQL. Psychometrics and known groups comparisons were reported. Linear regressions models assessed the effect of the parent's HRQL on proxy ratings.

Results: Eighty-six parents (67%) completed the measures. The child global HRQL score was low (63.1, SD = 24.9), although ratings of "family life" were higher (73.8, SD = 26.5). The parent global HRQL and emotional functioning (EF) scores were low, despite preserved physical and role function. Having a child with a congenital versus an acquired disability was associated with higher parental EF (p = .004). Higher parental EF correlated with a higher global child HRQL (p < .001).

Discussion: Families of children with CRI experience reduced HRQL. The Child Health Ratings Inventories is a valid tool for this assessment, identifying emotional distress and potential gaps in support.