Author(s): Marsack-Topolewski, C. N.
Published In: Families in Society: The journal of Contemporary Social Services, 102 (2), 240-252. (2020)
Study Aim/Purpose: The aim of this study is to examine the mediating effects of informal social support on the relationship between caregiver burden and quality of life for parents who care for only one adult child with Autism Spectrum Disorder (ASD) (noncompound caregivers) and those who provide care to multiple recipients (compound caregivers).
Summary of Methods: The study used a nonexperimental quantitative correlational research design to analyze survey responses of caregivers. Parent caregivers of adult children with ASD were recruited through various methods, including announcements by disability and autism-specific groups and face-to-face recruitment by the PI, who attended meetings with local organizations and support groups. Additional participants were recruited using snowball sampling (e.g., word of mouth). For analysis of the difference between these two groups, survey respondents were divided into two groups: compound caregivers who care for an adult child with ASD and another person, and noncompound caregivers who only care for their adult child with ASD. Participants completed a web-based survey. After data cleaning and eliminating cases who did not meet the inclusion criteria or had missing responses, the analysis included 320 participants, including 112 compound caregivers and 208 noncompound caregivers. The survey included demographic questions, measures of caregiver burden (using the Caregiver Burden Inventory and Caregiver Reaction Assessment); perceived quality of life (Assessed using the psychological domain of the World Health Organization’s WHOQOL-BREF, and informal social support received based on 7 items from the Coronary Heart Disease (ENRICHD) Social Support Index (ESSI).
A four-step mediation analysis was used to determine if the causal variable of caregiver burden is statistically correlated with quality of life and/or with informal social support, if informal social support is statistically correlated with the outcome variable of quality of life, and whether and to what extent the informal support was mediating the relationship between caregiver burden and quality of life. The latter analysis was conducted using the Sobel test, with a result greater than zero indicating that the informal support is partially mediating the relationship.
Summary of Results: For the study participants in total and for the compound and noncompound groups separately, the authors found a statistically significant relationship between level of caregiver burden and quality of life, indicating lower caregiver burden was associated with more positive quality of life. Lower levels of informal social support were related to greater caregiver burden for both groups of caregivers. Further, the key study finding was that informal supports were found to partially mediate the relationship between caregiver burden and quality of life for both groups , with a lesser effect for compound caregivers than for noncompound caregivers.
Study Limitations (as cited by authors): The authors acknowledged several limitations of this study. First, information was not obtained regarding the type or number of disabilities of the care recipients. Second, no information was obtained on whether the caregivers lived with the recipients of their care, the relationship of the recipients to their caregiver, and the caregivers’ health conditions. Third, the study participants were mostly female, White and of higher socioeconomic status, thus limiting the generalizability of the findings.
Authors’ Discussion/Conclusions: The authors note that future studies on this topic should recruit and secure a more heterogeneous sample of caregivers. The research should examine the role of formal social supports as well as informal supports in mediating the relationship between caregiver burden and quality of life. They also see a need for longitudinal research to examine the role of compound caregiving overtime as care recipients’ health and caregiving needs change over time.
With regard to this study’s implications for practice, the authors recommend that providers actively work with caregivers “to brainstorm and assess their level of informal support” and engage in intentional planning to balance everyday duties, obtain periods of respite (e.g. a family member staying with the care recipient while the caregiver takes care of her or his needs) and access informal social support networks as “a nonjudgmental ally to provide an outlet to share frustrations and reduce tension.”
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