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

Background/Purpose:The CDC estimates that approximately 15% of children and adolescents in the U.S. experience a developmental disability (DD) and that approximately 30% of these youth also have a diagnosable mental or behavioral health issue. Studies have shown that caregivers of youth with co-occurring DD and behavioral health issues experience the highest levels of caregiving strain. In addition, many of these caregivers must also deal with their own or another family member’s chronic health condition, stressors which may place them at even greater risk for poor outcomes. The aims of this study are to: (1) Provide a descriptive “snapshot” of caregivers of youth with co-occurring DD and behavioral health issues; (2) identify risk and protective factors among three groups of caregivers with graduated levels of health-related stressors (i.e., without additional health stressors, with minor health stressors, and with major health stressors), and; (3) examine the impact of risk and protective factors on caregiving strain in this DD caregiver population.

Methods: We conducted a secondary analysis of baseline data from DD caregivers (N= 600) participating in SAMHSA’s Longitudinal Child and Family Outcome Study. One-way ANOVA and chi-square tests were used to explore group differences in risk and protective factors. Linear regression with 6-month follow-up caregiving strain subscale scores as the dependent variables was used to identify predictors of objective, subjective internalized, and subjective externalized caregiving strain.

Results:Overall, caregivers were predominantly female (92%), white (66%), relatively well-educated (81.2% with at least a high school diploma), and living at or below the poverty level (71%). Significant group differences were found on a variety of risk factors (e.g., current unemployment, mental health and substance use issues, caregiver ratings of youth behavioral problems, caregiving strain) and protective factors (e.g., time for self or family, behavioral health literacy and empowerment, family quality of life). Predictors of caregiving strain were similar to non-DD caregivers and included youth behavioral problem severity and family quality of life. Compared to those without additional health stressors, caregivers with minor health stressors had significantly lower levels of caregiving strain.  

Conclusions and Implications: This study is among the first to explore risk and protective factors in a national sample of caregivers of youth with co-occurring DD and behavioral health issues. We found a number of striking features in the overall sample (e.g., 71% were living in poverty compared with a 15% poverty rate in the U.S. adult population), as well as significant differences between groups (e.g., 70% of caregivers with major health stressors with recent depression compared with 37% in the group without health stressors). While predictors of caregiving strain in this sample were similar to non-DD populations, it is noteworthy that experiencing a minor health stressor was protective against strain in this sample. These and other findings have implications for research, practice, and policy in social work.