591 - Burden and the association with social support among caregivers of individuals with intellectual/developmental disabilities

Poster Number: 591
Publication Number: 591.403

Telmo Santos, Cohen Children's Medical Center, New Hyde Park, NY, United States; Caren Steinway, Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, New Hyde Park, NY, United States; Jack Chen, Northwell Health, Jamaica, NY, United States; Ariana Mastrogiannis, Cohen Children's Medical Center, NYC, NY, United States; Jason Woodward, Cincinnati Childrens Hospital Medical Center, Cincinnati, OH, United States; Ilka K. Riddle, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States; John Berens, Baylor College of Medicine, Houston, TX, United States; Sophia Jan, Cohen Children's Medical Center, New Hyde Park, NY, United States

Background: Over 70% of individuals with intellectual and developmental disabilities (IDD) live at home with their primary caregiver. Many of these individuals outlive their caregivers, ushering in novel challenges as caregivers plan for the future of their care recipient. Therefore, it is critical to establish a deeper understanding of burden among these caregivers, in order to better support them and their care recipients.

Objective: To identify the degree of burden among primary caregivers of individuals with IDD, and to assess whether caregiver burden is lower in the presence of social support or engagement in respite care services.

Design/Methods: Our study included a convenience sample of caregivers of individuals with IDD. Participants received a cross-sectional survey distributed via IDD advocacy groups and health care systems in NY, OH, TX, and PA. Questions explored caregiver demographics and socioeconomic factors, burden based on the Zarit Caregiver Burden Index (ZCBI), caregiver social support (presence of an individual who could assist with care recipient needs), engagement in formal/informal support systems, and long-term care planning behaviors.

Results: Caregivers (n=405) were predominantly parents (91.6%), female (89.4%), and non-Hispanic (88.6%). Mean ZCBI score was 19.8+9.1, indicating a high degree of burden. Approximately 38.3% of participants (n=155) identified a source of social support, and 26.2% (n=106) reported receipt of respite care. Those with a source of social support had lower mean caregiver burden scores (ZCBI score of 16.3+8.5 versus 23.6+9.4, p< .001).Caregivers receiving respite care services however, had higher ZCBI scores compared to those not utilizing these services (21.9+9.9 versus 18.9+8.7, p=.005). Multivariate analysis further demonstrated that social support, as well as other factors, including White race, were associated with lower burden scores.Conclusion(s): Caregivers of individuals with IDD were found to have a high level of burden. Although the presence of social support was associated with a lower degree of burden, less than 40% of caregivers were able to identify a source of social support. From a clinical standpoint, medical providers of individuals with IDD can engage social workers who can link caregivers with resources for developing social support networks, joining caregiver support groups, and engaging earlier in underutilized programs like respite care.
Table 1.) Demographics/socioeconomic characteristics of caregivers (Nf405)
Table 2.) Association between presence of social support or current receipt of respite care services and caregiver burden*Zarit Caregiver Burden Index; total scores range from 0 to 48; higher scores = greater degree of burden. The caregiver burden score was calculated as a continuous (outcome) variable. Based on a secondary analysis of four studies that included caregiver populations of care recipients with three distinct advanced conditions (cancer, dementia, brain injury), the cutoff between low and high level of burden is 12.