Respite Care for caregivers of mentally challenged children in Pakistan: A Feasibility Study of the Family Peer Support Buddy Program

Abstract

Introduction: The Global prevalence of childhood disability is estimated to be around 95 million, with 50 million living in South Asia. In Pakistan, the prevalence of childhood disability is reported to be 19.1 per 1000 for profound disability, and 65.3 per 1000 for mild retardation. Caring for a child with a disability can have a significant impact on the well-being of caregivers. Respite care can be provided formally, taking help from trained professionals or informal care can be offered by friends and family members. Regardless of the type of respite care, the goal is to provide caregivers with a temporary break, which can help them, manage the challenges associated with care giving. Aim: This study aims to investigate the feasibility of delivering the adapted version of the Family Peer Support Buddy Program by voluntary family members. Methods and analysis: Setting: This study was carried out in rehabilitation institutes in Islamabad and Rawalpindi. Participants, including primary caregivers having a mentally challenged child and voluntary family members, were recruited. Volunteers were trained in their listening skills to provide respite to the caregivers. Data collection: Data was collected from the participants on recruitment, retention during the intervention period, acceptance of the intervention, satisfaction with and completion of the intervention 3 times, (0, 6, and 12 weeks). The stress levels and quality of life of the caregivers were also measured thrice with the help of validated tools. Results: 100 (100%) completed the first phase of data collection, 92 (92%) completed 2nd phase, and 85 (85%) completed 3rd phase of data collection. The acceptance rate for the mode and venue of intervention delivery was 100% and 68 (85%) of the caregivers and 74 (92%) of the volunteers were satisfied with the intervention. Results of the ANOVA test revealed a statistically significant difference in stress levels and quality of life of the caregivers before and after the intervention. Pearson product-moment correlation showed a strong negative relationship between stress levels and the quality of life of caregivers.