The Experience of having Primary Caregiving Responsibilities for an Adult Sibling with Down Syndrome
Abstract Background: The current generation of adults with Down syndrome is living longer and is likely to outlive their parents. Siblings have been identified as the likely future caregivers for adults with Down syndrome, yet little is known about what the experience is like for those who are currently caring for their siblings. It is necessary to gain an understanding of what the service needs are for this population in order to assist sibling caregivers. Objectives: To explore and describe the experience of being an adult who is partially or fully involved with primary caregiving responsibilities for a sibling with Down syndrome. Method: Using a phenomenological approach, interviews were conducted with seven participants who were either partial or full caregivers for their siblings who had Down syndrome. The interviews were audiotaped, transcribed, and analyzed using qualitative techniques. Themes were identified and described and the experiences of the participants were presented in narrative format. Results: Participants assumed the caregiving responsibilities for their siblings upon the disability or deaths of their parents. The transition was difficult since no prior planning had taken place. Caregiving has taken over every facet of their lives and requires juggling and coordinating on a daily basis. Conclusions: There is a need to promote communication about future planning among family members to provide for a smooth transition of caregivers upon the disability or death of the parents. Implications for nursing, social services, and future research are addressed.
Down syndrome, adults, siblings, caregiving, future planning, phenomenology, Clinical and Medical Social Work, Genetics and Genomics, Medicine and Health Sciences, Nursing
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