A meta‐synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children

Boshoff, Kobie; Bowen-Salter, Holly; Gibbs, Deanna; Phillips, Rebecca; Porter, Lisa; Wiles, Louise

doi:10.1111/hsc.13369

Cited by 15 publications

(8 citation statements)

References 41 publications

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“…3,24 Furthermore, waiting rooms could be particularly challenging for autistic patients; thus, efforts to improve the comfort (e.g., developmentally appropriate toys/books) can improve the health care experience. 25,26 Barriers noted in other studies but not explicitly discussed by our participants included stigma and socioeconomic determinants of health. 2,9…”

Section: Discussionmentioning

confidence: 93%

Elucidating the Perspectives of Autistic Youth About Their Health Care Experiences: A Qualitative Study

O'Hagan,

Foster,

Ursitti

et al. 2023

J Dev Behav Pediatr

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Objectives: Autistic individuals have higher rates of co-occurring medical conditions and service use. However, autistic individuals and their families also reported lower satisfaction with health care service delivery. Previous studies described health care experiences of autistic adults, but less is known about those of autistic adolescents and young adults. This study aimed to qualitatively describe the health care experiences of autistic youth. Methods: Four longitudinal/serial focus groups were conducted with 8 autistic adolescents and young adults. Participants were members of an autistic patient advisory board, which is part of a broader initiative at a large, urban, safety-net hospital to improve the health care experiences of autistic patients. Focus groups were conducted virtually and were audio-recorded. Audio recordings were transcribed and verified for accuracy. Transcripts were consensus-coded with an inductive approach using tenets of grounded theory. Results: Findings included 4 recurring themes: accessibility and accommodations, barriers of health service use, patient involvement in health care decisions, and facilitators of patient-clinician relationship. Participants noted that visit preparation, sensory items, and repeated positive interactions with clinician were helpful to build a positive health care experience. Conclusion: Our findings support previous research that suggest the need to individualize care, ensure availability of accommodations, apply flexibility in practice whenever possible, and increase health care professional knowledge about this unique patient population.

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Section: Discussionmentioning

confidence: 93%

Elucidating the Perspectives of Autistic Youth About Their Health Care Experiences: A Qualitative Study

O'Hagan,

Foster,

Ursitti

et al. 2023

J Dev Behav Pediatr

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“…Even though the included studies span over 21 years (1999 to 2020), it is surprising how the results and the themes within the studies did not vary across time, setting, and location (Walsh et al, 2021;Doherty et al, 2022;Soke et al 2018;Mazurek et al, 2020;Heslop et al, 2021;Boshoff et al, 2021;Mencap, 2012). Although policies and legislatures keep changing and upgrading over time, the barriers encountered by autistic children and their parents when accessing healthcare services remain constant, which reinforces the need for the current study.…”

Section: Discussionmentioning

confidence: 99%

Barriers and Facilitators of Healthcare Access for Autistic Children in the UK: a Systematic Review

Babalola,

Sanguedolce,

Dipper

et al. 2024

Rev J Autism Dev Disord

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Background Individuals with autism are more likely to suffer from various physical and mental health problems and experience disparities in effectively accessing healthcare services. This review aims to identify studies that report on the experiences of autistic children, their parents/carers, and the healthcare professionals treating them; to develop an understanding of the facilitators and barriers to healthcare access in order to inform policies and practice to improve access to healthcare for autistic children in the UK. Methods A total of 3069 records were screened, and 24 studies were included; six quantitative, four qualitative, and fourteen mixed-methodology studies. Results Professional and parental knowledge about autism, sensory issues, challenging behaviour, system-level barriers, patient-provider-parent communication issues, lack of person-centred care, stigma, and culture emerged as significant barriers to accessing healthcare for autistic children. Conclusions Families of autistic children experience several barriers to accessing healthcare. Recommendations for those planning services and clinicians are discussed.

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“…Other, ASD and non-ASD behavioral parent treatment research has indicated that the use of motivational interviewing techniques enhances caregiver engagement and ultimately outcomes (Nock & Kazdin, 2005 ; Rogers et al, 2019 ). It is also possible that variables such as simple access to treatment with a provider with ASD knowledge and understanding, having parental voices heard and recognized, feeling listened to and validated, and hearing about the experiences of other caregivers of autistic youth are helpful (Boshoff et al, 2021 ). Thus, improvements were noted in both groups, possibly due to the PST being an efficacious intervention on its own.…”

Section: Discussionmentioning

confidence: 99%

A Preliminary Evaluation of a Brief Behavioral Parent Training for Challenging Behavior in Autism Spectrum Disorder

Rohacek

Baxter

Sullivan

et al. 2022

J Autism Dev Disord

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Children with autism spectrum disorder (ASD) often exhibit challenging behaviors. Existing behavioral parent trainings (BPT) address ASD symptomology, but are lengthy and associated with significant attrition. In the current pilot study, a longitudinal randomized controlled trial was used to evaluate a novel brief BPT targeting caregivers of children with ASD ages 5–9. The 6-session BPT, delivered in a group format, focused on high-frequency challenging behaviors (e.g., problem behaviors, feeding and sleep issues). Caregivers who received BPT ( n = 29), relative to an active control (psychoeducation/supportive therapy; n = 9), reported higher treatment satisfaction and acceptability. Challenging behaviors were reduced in the BPT and active control groups. The novel BPT was a feasible and acceptable intervention to target challenging behaviors in youth with ASD. Supplementary Information The online version contains supplementary material available at 10.1007/s10803-022-05493-3.

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A meta‐synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children

Cited by 15 publications

References 41 publications

Elucidating the Perspectives of Autistic Youth About Their Health Care Experiences: A Qualitative Study

Elucidating the Perspectives of Autistic Youth About Their Health Care Experiences: A Qualitative Study

Barriers and Facilitators of Healthcare Access for Autistic Children in the UK: a Systematic Review

A Preliminary Evaluation of a Brief Behavioral Parent Training for Challenging Behavior in Autism Spectrum Disorder

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