The health-related quality of life in mothers of surviving deaf-blind adult children with congenital rubella syndrome

The purpose of this study is to determine the health related quality of life (HRQOL) of mothers of surviving deaf-blind adult children with congenital rubella syndrome (CRS) and the relationship of factors that influence it. This study uses a cross sectional design with all of the study participants having surviving CRS adult children born from the 1963-1965 epidemic. Demographic information was incorporated into a self-administered questionnaire along with three established instruments: The Medical Outcomes Study 36-Item Short-Form Health Survey, Caregiver Strain Index (CSI) and the Modified Barthel Index (MBI). This study utilizes the Family Systems Theory to expand the understanding of maternal HRQOL. Analysis revealed that: (1) Maternal CSI scores were significantly associated with the HRQOL domains F (13, 273) = 67.175 p < .001. Mothers who experienced high levels of caregiver stress had a poorer overall quality of life than those with lower levels of stress. (2) The deaf-blind adult child's with CRS functional ability was significantly associated with the maternal HRQOL domains F (22, 263) = 17.03 p < .001. Mothers of adult deaf blind children with low MBI scores had poorer overall quality of life than those with higher scores. (3) Communication method were significantly associated with the HRQOL domains. Communication with American Sign Language (M = 80.39, SD = 20.8) demonstrated better overall maternal HRQOL scores than those with gestures (M = 31.49, SD = 32.57), F (8, 277) = 17.471, p < .001. (4) Behaviors were significantly associated with the HRQOL domains with the largest difference between the adult-child demonstrating no apparent behavior (M = 89.77, SD = 11.7) to those presenting aggressive behavior (M = 30.95, SD = 30.37), F (7, 279) = 21.130 p < .001. As the prevalence of children with disabilities continues to increase, so does the demand for professionals who understand the unique needs of caregivers. As these children transition to adult care, professionals must understand the impact the special needs have on the mother and by extension, the family, and be able to provide the care and resources needed to bridge the transition and support the continued care.