Physician Cohen Children's Medical Center of Northwell Health Cohen Children's Medical Center of Northwell Health, Connecticut, United States
Background: About 3% of the population has an intellectual/developmental disability (IDD) and many of these individuals outlive their caregivers. This prevalence highlights the importance of supporting caregivers in developing long-term care (LTC) plans for their loved one. Identification of a primary caregiver has been established as the key step in future planning, but further insight into the impact of caregiver social support and interaction with informal/formal system support on planning development is critical.
Objective: To further understand the role of caregiver social support and interaction with informal/formal systems and their influence on LTC planning.
Design/Methods: Our study included a convenience sample of family caregivers of children with IDD. Participants received a cross-sectional survey distributed via IDD advocacy groups and health care systems in NY and OH. Questions explored caregiver demographics, social support—defined as identifying an additional individual who could assist with care recipient needs—, support from formal/informal systems, and LTC planning behaviors.
Results: Caregivers (n=205) were predominantly parents/legal guardians (64%), White (88%), non-Hispanic (96%), and females (88%) (Table 1). About 35% of caregivers (n=194) identified a source of social support. The mean number of formal system supports for caregivers (n=207) was 3.3+2.1 (three most common: federal health insurance, Medicaid waivers, and a form of monthly cash stipend). The mean number of informal system support for caregivers was 3.9+2.5 (three most common: friends/family, school-based services, and online communities). Caregivers with an identified source of social support engaged in more LTC behaviors compared to those unable to identify a source of social support (3.4+0.9 versus 3.1+0.9, p=.036). Further, formal and informal system supports were significant predictors of LTC planning. Conclusion(s): Caregivers who identified an individual who could assist with care recipient needs were found to participate in more LTC planning. Both the number of formal and informal supports were also significant predictors of LTC planning. Further studies into the social/emotional needs of caregivers, available mental health programs, and barriers to obtaining services is imperative.
Authors/Institutions: Telmo C. Santos, Cohen Children's Medical Center, Danbury, Connecticut, United States; Caren Steinway, Cohen Children's Medical Center, Danbury, Connecticut, United States; Jack Chen, Cohen Children's Medical Center, Danbury, Connecticut, United States; Ariana M. Mastrogiannis, Cohen Children's Medical Center, Danbury, Connecticut, United States; Sophia Jan, Cohen Children's Medical Center, Danbury, Connecticut, United States