Development and evaluation of a novel caregiver-report tool to assess barriers to physical healthcare for people on the autism spectrum

Abstract

Highlights A novel caregiver-report Barriers to Healthcare tool for autistic individuals was developed and evaluated. Results suggest that barriers to healthcare occur at the patient, healthcare-provider and systems levels. Autism severity, anxiety, general adjustment problems, age, and having unmet needs significantly predicted barriers endorsed. This tool may guide the development and evaluation of initiatives to reduce healthcare barriers for autistic individuals;

Development and preliminary evaluation of a novel physician-report tool for assessing barriers to providing care to autistic patients

“…GP General practitioner congruent with current understandings of barriers to access by autistic patients and their caregivers [26,66], and may be considered to supplement existing tools for caregivers [31] and autistic adults [26]. It must be noted that there is some convergence between items in the current tool and those of previously reported tools which assess barriers to healthcare for autistic patients (e.g., [13,33,61,67]).…”

“…In order to ensure that this is the case, the specific difficulties physicians face when caring for their autistic patients first need to be understood. Although measures exist to facilitate exploration of healthcare-associated barriers among autistic adults [26], or the caregivers of autistic individuals [31], there is a lack of established methods for engaging staff about their experiences and perceptions. A number of previous studies have used HCP-reported measurement tools to assess barriers to providing healthcare to autistic individuals, however, they are typically limited in the array of barriers that they assess (e.g., [32][33][34]).…”

“…Future research should also use the current tool with other HCP populations such as nurses and allied health professionals. In a previous study [31], the authors developed a caregiver-report Barriers to Healthcare tool, and Raymaker and colleagues [26] have developed a selfreport tool for autistic adults. There is a need however, to involve healthcare providers other than physicians in this type of work as these professionals are also highly involved in the care of autistic patients.…”

A Systematic Review of Interventions to Improve Healthcare Experiences and Access in Autism

“…This is particularly true given that none of the included studies employed a full randomized controlled trial design (two studies employed randomization but were described as pilot studies) which continues to constitute the "gold standard" for interventional research and to afford the most trustworthy evidence on effectiveness (Bothwell et al, 2016;Hariton & Locascio, 2018). However, research has now effectively delineated the barriers to healthcare access (Calleja et al, 2020;Mason et al, 2019;Walsh et al, 2020a), and there exist a number of tools to facilitate data collection in relation to the barriers to healthcare access experienced by autistic adults (Nicolaidis et al, 2013) or the caregivers of autistic persons (Walsh et al, 2020b) or healthcare providers (Walsh et al, 2021) which should facilitate future research in this area. This research must move beyond developing understanding on, and collecting data relating to experiences of, healthcare access and experiences of autistic persons to "actioning" data to inform the development and implementation of interventions to improve the care and health of autistic persons.…”

“…Researchers, or quality professionals, may wish to use existing tools to establish the barriers to care in advance of intervention development to ensure that interventions are likely to yield perceptible improvements for autistic patients. For example, Raymaker and colleagues (2017) have developed a tool that allows autistic individuals to self-report barriers experienced in healthcare settings, Walsh et al (2020b) present a tool which allows the caregivers of autistic patients to report on the frequency and severity of barriers experienced in physical healthcare settings, and Walsh et al (2021) have completed initial validation of a tool which allows healthcare providers to identify barriers to care provision or access for autistic patients. The use of such tools will allow providers or organizations to determine the most frequent (and in some instances, the most severe) barriers impacting care for autistic patients within their organization or setting.…”