The Experience of Caregiving for an Adult Sibling with Down Syndrome

Abstract

Adults with Down syndrome are living longer than ever before and are likely to outlive their parents. Adult siblings have been identified as future caregivers, yet little is known about this experience. The prominent caregiving literature focuses on the anticipation of caregiving rather than on the experience of being a caregiver. The aim of this study was to explore the lived experience of being a caregiver to an adult sibling with Down syndrome. A descriptive phenomenological approach was used to interview seven siblings who were partial and full caregivers for an adult sibling with Down syndrome. The participants fulfilled multiple roles in the lives of their siblings throughout their adult lives, but felt unprepared to fulfill the duties of being full-time caregivers upon the death of their parents. Navigation of the social service system was complex and frustrating with no support or guidance. Everyday tasks of caregiving were time consuming and managing the medical and social service needs of their siblings was viewed as a huge responsibility. Participants felt the responsibilities of caregiving put limitations on their personal lives. Despite the challenges, participants felt caregiving had benefits also. The transition to being caregivers was difficult because of the lack of planning by their parents, yet participants have not made plans for the future succession of caregiving. Implications are identified for healthcare and social service professionals to aid families in the care of adults with Down syndrome and in planning for the future transition of caregiving in families.