Publication year
2016
Citation Title
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
Journal Name
Research in Developmental Disabilities
Journal Volume
59
Page Numbers
399-409
DOI
190.1016/j.ridd.2016.09.013
Summary
Caring for a child with a developmental disability can be stressful and may be particularly difficult when additional stressors are added. Risk and protective factors for caregivers of children with developmental disabilities were compared for families with no, minor, or major additional health concerns. These caregivers handled extreme levels of stress (e.g., emotional, financial, relational) related to their child’s disorder, but more support from family and friends seemed to buffer caregiver stress.
Key Findings
Caregivers, in general and in particular those with additional major health stressors, had very high rates of unemployment (52%, 67%) and poverty (71%, 75%), respectively.
Higher family functioning and time for self-care were associated with less caregiver emotional stress at follow-up.
More child internalizing and externalizing behaviors were associated with greater emotional stress and number of stressful events among caregivers at follow-up.
Implications for Military Professionals
Attend trainings about how to support caregivers of youth with developmental disabilities
Facilitate support groups for military families with youth with a developmental disability
Implications for Program Leaders
Educate military parents who are caregivers of youth with developmental disabilities about the risk and protective factors for their own adjustment and well-being
Provide workshops for military families with a child with developmental disabilities to learn improved family communication, decision-making, and support
Implications for Policy Makers
Support programs that offer help to military caregivers of children with developmental disabilities to find employment and childcare
Recommend providing mental health resource referrals in all military parenting programs
Methods
Data from caregivers of youth with a developmental disability and co-occurring behavioral health problem were drawn from a Children’s Mental Health Initiative study of at-risk families.
Caregivers completed baseline and six-month follow-up questionnaires about family support services, stressors, youth’s behaviors and disabilities, self-care, and family functioning.
Caregivers’ stressors and risk and protective factors were compared between caregivers with either no, minor, or major additional health stressors of themselves or another family member.
Participants
Participants included 600 caregivers (M = 39.15 years, SD = 9.67) who were 92% female and primarily biological parents (76%), grandparents (8%), or foster, adoptive, or step-parents (13%).
Caregivers had either no (34%), minor (51%), or major (16%) additional family health stressors.
Caregivers’ children with developmental disabilities were ages 6-20 years and 72% male.
Caregivers identified as White (56%), Black (22%), Latino (12%), Multiracial (6%), Native American (2%), or Asian American (1%).
Limitations
Participant drop-out was problematic (26%), and participants who remained in the study reported more child internalizing and caregiver mental health problems at baseline.
Caregivers were 92% female, and results may not generalize to male caregivers.
It is unclear how seriousness of additional health concern groups were determined, and researchers’ subjectivity may have influenced the results.
Avenues for Future Research
Compare differences in caregiver stress when additional health problems are related to either the caregiver’s or another family member’s health
Examine differences in male and female caregiver stress levels in high-stress family situations
Explore voluntary and involuntary factors related to caregiver unemployment
Focus
Civilian
Population Focus
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 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.
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