Respite care and stress among caregivers of children with autism spectrum disorder: an integrative review

Author(s): Whitmore, K.E.

Published In: J Pediatr Nurs, 31(6):630-652

Study Aim/Purpose: The aim of this paper was to review existing primary research studies examining the relationship between respite care and stress among caregivers of children with autism spectrum disorder (ASD). 

Summary of Methods: The review used an integrative review framework to identify English language studies published within the last 10 years that used either experimental or non-experimental designs. Articles were located using the PubMed, CINAHL, ERIC, and Psych Info databases using the following key words: ‘child development disorders pervasive’ or ‘autism’ or ‘autism spectrum disorder’ and ‘stress’ or ‘parent stress’ or ‘caregiver stress’ and ‘respite care.” Additionally, references from articles identified in the database searches were reviewed to identify additional articles for inclusion. 

Summary of Key Results (related to studies of effectiveness): A total of 26 documents was identified and a final sample of 11 articles were included in the review. Of these, ten were appraised as descriptive or qualitative studies and one was an expert opinion publication. While most of the studies found that respite care was associated with lower stress, several found that respite care was associated with higher stress, and one found no association. 

Limitations of Studies Reviewed (as cited by the author): The author found that the quality and scientific rigor of studies reviewed were limited. The studies were all descriptive, observational studies using retrospective design with no control groups. The author also noted limited comparability across studies because study sample size (ranging from six to 166) and measures of respite care and caregiver stress varied greatly. The author also pointed out the homogeneity of the study populations with the majority only studying caregivers who were Caucasian females, well-educated, married or partnered, not poor, and employed at least part-time. 

Authors’ Discussion/Conclusions: The author states that “due to the lack of consistency and quality across the studies,” findings must be interpreted with caution and “significant gaps remain.” A model for future research is proposed that takes into account intermediate factors such as (1) the adequacy of informal respite care (e.g., provided by family members, friends, neighbors, and faith-based organizations); (2) the effects of informal respite care on caregivers’ stress level and their need for formal respite care; and (3) the adequacy of the formal respite care received (e.g., using measures of frequency, duration, and timing as well as caregiver satisfaction with respite care). The author also recommends that research be conducted with more demographically diverse populations of caregivers including non-White mothers, fathers, caregivers living in rural areas, and caregivers with lower incomes and educational levels.