Quality of Life Among Caregivers of Individuals With 22q11.2 Deletion Syndrome and Intellectual Disability

Caregiving for a person with 22q11.2 chromosome deletion syndrome (22q) often entails dealing with medically life-threatening complications and is significantly compounded when the care recipient has comorbid 22q and intellectual disability (ID). The purpose of this study was to examine the effect of support, spirituality, and resiliency on the quality of life (QOL) of caregivers of individuals with comorbid 22q/ID to ascertain if these protective factors would reduce their caregiving burden. Study participants consisted of 469 caregivers of persons with 22q/ID who were recruited through 22q social advocacy groups. Correlational analyses, analyses of variance, and multiple regression analysis were used to identify significant results regarding caregivers’ QOL. The results showed a significant correlation between supports (immediate family, extended family, community, and religious organizations) as a means to mitigate caregiver stress. The mitigation of stress was also a significant correlating factor for improving the QOL of caregivers. In addition, the role of spirituality/religion showed a promising correlation for helping improve the QOL among caregivers as a secondary mitigating factor. Males endorsed more caregiver stress than females and the age of the care recipient was related to caregiver stress and QOL. Resilience was not a significant mitigating factor for improving caregiver QOL. Implications for caregivers and recommendations for future caregiver research are provided