Caregiving for Youth with Co-Occurring Developmental Disabilities and Behavioral Health Issues When Caregivers Face Additional Health-Related Stressors: Analysis of Risk and Protective Factors From a National Sample

Background: Family caregivers of youth with DD and behavioral health issues experience the highest level of caregiving strain. Many must also deal with their own or another family member’s chronic health condition, which may place them at additional risk for poor outcomes. Aims: (1) Provide a “snapshot” of DD family caregivers based on a national sample; (2)identify risk and protective factors among groups of DD caregivers with graduated levels of health-related stressors; (3) examine the impact of risk and protective factors on strain for DD caregivers.Methods and procedures: We conducted a secondary analysis of data from N = 600 DD care-givers recruited through sites across the United States. Risk and protective factors were compared among three groups of caregivers at study enrollment: (1) those focused on providing care for the target youth with DD, without additional health-related stressors with which to contend; (2) those contending with minor additional health-related stressors; and, (3) those contending with major additional health-related stressors. Predictors of caregiving strain at six months post-enrollment were identified.Results: 52% of the overall sample was unemployed and 71% were living at or below poverty.Differences were found among groups on a variety of risk and protective factors. With some exceptions, predictors of caregiving strain were similar to non-DD populations.Conclusions and implications: This study provides valuable information about a population of caregivers who are highly vulnerable to poor outcomes. Findings highlight the importance of considering the needs, strengths, and outcomes of family caregivers.