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.
Caregiver strain rises sharply when families juggle DD plus any chronic health stressor, so screen for poverty and parent illness at intake.
01Research in Context
What this study did
Researchers looked at a national sample of 600 caregivers of youth with developmental disabilities. They wanted to see how extra health stressors, like a parent's own chronic illness, change caregiver strain.
The team used existing survey data to sort families into groups based on how many health-related stressors they faced. Then they compared risk and protective factors across these groups.
What they found
Half of the caregivers lived in poverty or were unemployed. As health stressors piled up, caregiver strain rose in a clear step-wise pattern.
The predictors of strain looked similar to those seen in non-DD families: low income, poor caregiver health, and lack of support.
How this fits with other research
The finding extends Burford et al. (2003) and Martorell et al. (2011), who also showed that adding mental-health issues to ID/DD hikes family burden. Faso et al. (2016) widens the lens to any chronic health stressor, not just psychiatric ones.
Klein et al. (2024) mirrors the strain picture in a smaller Canadian DCD sample, while Scheithauer et al. (2025) give concrete numbers: 73 % of caregivers face physical harm from severe behaviour. Together they paint a growing evidence map that more diagnoses equal more risk.
An apparent contradiction pops up with Laposa et al. (2017): they report coping skills matter more than caregiving load. Faso et al. (2016) still find load matters, but the two studies measured different things—objective tasks versus added health roles—so both can be true.
Why it matters
If half of DD caregivers are in poverty and strain climbs with each new health problem, you need to screen for these factors at intake. Ask about parent health, income, and other caregiving roles before writing behaviour plans. Simple referrals to food banks, respite, or a PHQ-9 depression screen (already validated by Jin-Ding et al. 2014) can keep families in treatment and improve client outcomes.
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02At a glance
03Original abstract
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 caregivers 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.
Research in developmental disabilities, 2016 · doi:10.1016/j.ridd.2016.09.013