Who cares? Understanding the landscape of caregiving for persons with developmental disabilities in Singapore

Abstract

Despite extensive research on various landscapes of care, the specific domain of caregiving for persons with developmental disabilities (PWDDs) remains under-explored. This study delves into how families caring for PWDDs perceive the distribution of care work and the role of the State in influencing this distribution, focusing on the perspectives of family members who are primary caregivers. Through a thematic analysis of 18 qualitative semi-structured interviews with parents and siblings of PWDDs, this research sheds light on the intricate interplay between Familism, institutions of care, and the Feminisation of Care. Our findings indicate that families emerge as the cornerstone of caregiving, assuming the majority of responsibilities. Notably, within these family structures, there is a marked gender disparity in the allocation of care tasks, with women significantly more likely to bear the brunt of caregiving duties. While state and non-governmental organisations (NGOs) support systems are ostensibly designed to alleviate the burden on families, limitations in the scope and efficacy of such support inadvertently perpetuate the reliance on family-based care. This study contributes to the literature by highlighting the perceptions, challenges faced, and aspirations of family members towards distributing care work. It underscores the need for more robust support mechanisms and greater societal inclusivity to support family caregivers in Singapore.