Health-related quality of life and coping strategies among families with Down syndrome children in South India

Abstract

BackgroundDown Syndrome (DS) is the most common chromosomal disorder associated with intellectual disability. Besides clinical management, additional support to cope with the demands of life is also necessary. These parents are frequently unstable and forego their Quality of Life (QoL), suffer additional economic difficulties, ill health and have lower well-being than families without disabilities. Hence, the study intends to evaluate the Health-Related QoL (HR-QoL) and coping strategies among families of DS children. MethodsThis explorative, cross-sectional study was conducted among parents/caregivers of DS children (n = 51). Socio-demographic details, HR-QoL, coping strategies and perspectives on having a child with disability were obtained through a standard questionnaire. ResultsMost DS children were upper and upper-middle class of urban background. The mean score of the QoL of the families was found to be 68.98%. The least and the most affected domains were cognitive functioning (71.67%) and worry (57.33%), respectively. Maximum coping was through the instrumental social support, active coping and religious coping. Though 27.45% were upset with the diagnosis, most had a “feeling of love” towards the child (72.55%). 50.98% had limited knowledge about DS and lacked organizational support (60.78%). ConclusionWith increasing life expectancy, the gap continues concerning the assessment of needs beyond medical aid among DS children. Better HR-QoL and coping with the stress could be ensured by the provision of comprehensive health policies inclusive of training programs, stress management, as well as psychosocial and organizational support across any socio-economic strata.