A Systematic Review of Resilience in Family Caregivers of Autistic Adults: Implications for Research,Practice,and Policy

Abstract

Background: Family caregivers (FCGs) of autistic adults may provide lifelong care and experience chronic stress, stigma, and social isolation, placing them at risk of poor health and quality of life (QOL). Resilience, stress, and coping research have primarily been limited to FCGs of autistic children with inconsistent conceptual and operational definitions and measurement. Our systematic review aimed to examine resilience in FCGs of autistic adults.

Methods: Guided by the Transactional Model of Stress and Coping (TMSC), our review followed Preferred Reporting Items for Systematic Review and Meta-Analysis guidelines and was registered with PROSPERO. Comprehensive searches of 10 databases identified 1935 records. Johns Hopkins Evidence-Based Practice Model and Guide Tools guided the risk of bias analysis.

Results: Our systematic review included 19 studies that met inclusion criteria. We conducted a narrative analysis and mapped included studies’ concepts to the TMSC. Designs were cross-sectional and phenomenological. Higher FCG QOL and well-being were associated with increased problem and meaning-focused coping, social support, future planning, and less perceived burden and stigma. A variety of FCG and autistic adult person and environment factors provided context for the stress and coping process.

Conclusions: Social support and coping strategies were crucial for FCG resilience outcomes and may inform clinical guidelines and policy development. Additional research is warranted to examine social support, coping strategy, future planning, and perceived burden and stigma as modifiable factors to enhance FCG resilience. Using well-defined theoretical constructs and measures would strengthen future systematic reviews and contribute to clinical guidelines and policy development.

Community Brief

Why is this an important issue?

Decades of research have focused on the high stress, social isolation, stigma, poor health, well-being, and quality of life of family caregivers of autistic children. More recently studies have included family caregivers of autistic adults. But few studies have focused on the resilience of family caregivers of autistic adults.

What is the purpose of the review?

Using a stress and coping framework to organize the review, we sought to understand research published about family caregiver resilience.

What did the authors do to review the literature?

Using a preregistered plan, we systematically searched 10 national databases for studies about the resilience of adult caregivers of autistic adults. Searches identified 1935 records, and after initial screening, we read 86 articles to determine if they were about resilience in family caregivers of autistic adults. After a careful quality assessment of each study using published quality tools, we included 19 studies in the final analysis.

What did the authors find?

Resilience of family caregivers was associated with increased social support, problem-solving and meaning-making coping skills, planning for future care of the autistic adult, and less feelings of burden and stigma. We used the stress and coping framework to organize the 19 studies to aid future study design, guide clinicians, and provide evidence to policymakers making decisions about funding supports and services for families.

In summary, what did those studies show?

Adequate social support and problem-solving and meaning-making coping skills were crucial to family caregiver resilience. Social support (especially peer networks) and effective coping skills can lessen the impact of chronic stress, stigma, and unmet service needs on family caregiver health, well-being, and quality of life.

What are the remaining gaps in the literature?

More studies are needed using a strengths- or asset-based approach to studying stress and coping of family caregivers of autistic adults. Future studies would benefit from well-defined, theory-based studies of social connection, self-stigma, and coping that include autistic adults’ perspective. Studies that include multiple family members and studies at the community level may reveal opportunities to increase family resilience.

Based on this review, what do the authors recommend?

We recommend additional research to understand better how modifiable factors such as social support, problem-solving and meaning-making coping skills, future care planning, and lessening feelings of burden and self-stigma may enhance family caregiver resilience. Researchers, clinicians, policymakers, and others may use this information to develop services and supports for individuals, families, and communities tailored to growing social support, social networks, and effective coping skills.