Exploring the Perceptions and Needs of Sibling Caregivers for Adults with Intellectual or Developmental Disabilities

Purpose: Sibling caregivers comprise a population of increasing significance to intellectual/developmental disabilities (I/DD) policy and practice. As persons with I/DD and their caregiving parents age, more families are turning to adult siblings to continue caregiving. Today, over 80% of persons with I/DD live with family members; up to 20% reside with siblings. Sibling caregiving has the potential to meet some of the growing social need for later life care of persons with I/DD, but is not well understood.

Sibling caregivers are often assumed to share the characteristics and needs of other caregivers, e.g. parental caregivers or adult children caring for aging parents; however this assumption has not been well tested. Studies have centered largely on children. A growing number of recent studies concern adults. These studies tend to explore expectations and likelihood of assuming care given certain characteristics of the person with I/DD, and parental influences. The present study focused on factors associated with successful caregiving outcomes among siblings already providing care.

Method: A web-based questionnaire was developed to learn factors involved in decision-making dynamics, information and service needs, retrospective evaluation of the decision to provide care, and future caregiving intentions. The study utilized mixed quantitative-qualitative methodologies.

Responses were obtained from 1,073 adult sibling caregivers across the United States. Respondents needed to report an average of 16 hours per month caring for adult siblings with I/DD living outside of I/DD system funded settings to participate. Results were analyzed using logistic and linear regression to test hypotheses, with interaction effects examined to identify the impact of caregiver stage of life on intent to continue providing care.

Results: Service usage was associated with intent to provide future care and caregiver satisfaction. Services appeared most important for young adults under age 35 and those age 50 and older. People with less formal education reported higher intent to provide care in the future, as did those receiving more services. Positivity of caregiver-recipient relationships was associated with increased caregiving satisfaction and likelihood of continuing to provide care. Qualitative responses revealed that supportiveness of spouses/partners played an important role in future caregiving intentions. Interestingly, siblings' caregiving definitions were diverse. Definitions often included care for aging parents to facilitate them continuing in primary care roles. Some did not identify with the term “caregiver,” though they provided substantive care.

Implications: Given gaps in communication between siblings and service providers, including social workers, results highlight a need for organizational policy changes to promote sibling inclusion in current and future care planning processes. They also suggest a need for sibling education about the disabilities service system—and education of the providers on siblings' unique perspectives. Increased sibling involvement in the “care team” may build in supports that will sustain positive relationships between siblings and promote increased caregiving satisfaction. In this poster, these and more findings will be described within the framework of developing best practices and shifting organizational paradigms to better serve sibling caregivers.