Parents’ experiences of accessing respite care for children with Autism Spectrum Disorder (ASD) at the acute and primary care interface: a systematic review

Abstract

Background: Population prevalence estimates by the World Health Organisation suggest that 1 in 160 children worldwide has an Autism Spectrum Disorder (ASD). Accessing respite care services for children with an ASD can often be a daunting and exhaustive process, with parents sometimes forced to access acute hospital services as an initial point of contact for respite care or in a crisis situation. To gain an in-depth understanding of accessing respite care for children with an ASD, from the perspectives of parents, a systematic review of the evidence on parent's experiences and views of respite care for children with an ASD at the acute and primary interface was undertaken. Methods: Pubmed, Embase, CINAHL and PsycINFO were systematically searched. Studies identified as relevant based on predetermined eligibility criteria were selected for inclusion. The search strategy also targeted unpublished studies and grey literature. Qualitative data and qualitative components of mixed method studies that represented the experiences of parents accessing respite care for children with an ASD were eligible for inclusion. A meta-aggregative approach was used during data synthesis. Results: Database searching elicited 430 records of which 291 studies remained after removal of duplicates. These 291 studies were screened for title and abstract by two reviewers resulting in 31 studies to be screened at full text and assessed for eligibility. Six studies met the inclusion criteria and a further additional study also met the inclusion criteria during a manual search. As a result, 7 studies were selected for the review as set out in Fig. 1. Conclusion: In the absence of appropriate services and defined pathways to support services such as respite care, overwhelmed parents and community providers of mental health resources may not be in a position to meet the specific needs of children with an ASD and their families which may be contributing to a direct increase in hospitalizations. This systematic review identified a number of barriers to respite care, of which the findings can be used to inform future service development and further research. Knowledge of parental experiences in caring for a child with an ASD is vital in addressing the need and type of respite care required for children with an ASD. Systematic review registration: PROSPERO CRD42018106629.

Impact of Respite Care Services Availability on Stress, Anxiety and Depression in Military Parents who have a Child on the Autism Spectrum

“…This association needs to be assessed carefully, however, as there were only fifteen officers represented in our study population and the input from these officers may not be reflective of the military officer population as a whole. A recent systematic qualitative review of parental perceptions and individual experiences with respite services expounded upon some of the major barriers parents face in accessing available respite care resources for their child with ASD (Cooke et al, 2020 ). This review highlights the need for families with autism spectrum disorder children to receive better education and counseling on the benefits of respite care; and the need to dispel emotional barriers to seeking out help and resources.…”

The Impact of COVID-19 Pandemic Containment Measures on Families and Children with Moderate and High-Functioning ASD (Autism Spectrum Disorder)

“…Increased stress levels and lower levels of well-being of parents of children with ASD were confirmed by a large number of studies [29] in comparison with parents of neurotypical children or children with other forms of disability [30][31][32][33]. Furthermore, it could often lead to burnout, depression, and psychological and physical breakdown, a condition that is exacerbated by deficits in services and general childcare [26,27,34].…”

Exploring Challenges and Needs of Parents Providing Care to Children with Autism Spectrum Disorders: A Qualitative Study

“…This causes many parents to avoid going out and adopt a different lifestyle. Studies have shown that some parents, due to the severe stress imposed by long-term, extensive care provision, completely withdraw from social life due to the child's behavioral problems and the conflicts caused when others try to deal with the autistic child (23). Research has shown that negative judgments by others increase depression, anger, and stress in parents (6).…”