Quality of Life of Children with 22q11.2 Deletion Syndrome: Family-, Healthcare-, and Community Relationships Matter

Abstract

Objective: Children with 22q11.2 deletion syndrome (22q11DS) have numerous needs that make partnerships between family, health care, and community essential. This study examined the effect of maternal perceptions of social capital on child quality of life (QOL). Mothers’ experiences with family centered care were explored as a mediator. Method: Data were retrieved from the 22q Family Matters Project. Eighty-two mothers from across the US with children who have 22q11DS were included. All mothers completed a mailed-survey. The main outcome measure was parent-proxy child QOL using the PedsQLTM Generic Core Scale. Other variables included the Social Capital Scale, a composite measure of family centered care, child age, child health complexity, and maternal education level. Path models were examined using multiple regression, as described by Baron and Kenny (1986). Results: Children with 22q11DS have complex health problems that negatively affect their QOL (p < .001). Mothers’ perceptions of social capital in their communities explained why some children have relatively higher QOL (p < .05). Family centered care did not explain the variation in child QOL (p > .10); the mediation hypothesis was not supported. Mothers with higher education reported less family centered care (p < .05); however, these mothers also had children with relatively higher QOL (p < .05). Conclusion: This study provides evidence that QOL among children with 22q11DS is affected by more than biomedical factors. Family and community partnerships matter as we seek to develop evidence-based collaborative healthcare models.