Health communication: A pilot study comparing perceptions of women with and without high functioning autism spectrum disorder

Lum, Michelle; Garnett, Michelle; O’Connor, Erin L.

doi:10.1016/j.rasd.2014.09.009

Cited by 38 publications

(46 citation statements)

References 53 publications

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“… 59 Physical examinations can also be a source of embarrassment and/or discomfort for individuals with intellectual disabilities. 38 , 60 – 63 Some people with intellectual disabilities and/or autism find the clinical environment daunting, 63 , 64 owing to unpleasant or alarming noises, odours, and bright lights. 31 , 65 The waiting room may induce anxiety, especially if the individual is unsure of why they are there.…”

Section: Resultsmentioning

confidence: 99%

Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review

Doherty¹,

Atherton

Boland³

et al. 2020

BJGP Open

129

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BackgroundGlobally, people with intellectual disabilities and/or autism experience health inequalities. Death occurs at a younger age and the prevalence of long-term morbidities is higher than in the general population. Despite this, their primary healthcare access rates are lower than the general population, their health needs are often unmet, and their views and experiences are frequently overlooked in research, policy, and practice.AimTo investigate the barriers and facilitators reported by individuals with intellectual disabilities, autism, or both, and/or their carers, to accessing and utilising primary health care for their physical and mental health needs.Design & settingAn integrative review was undertaken, which used systematic review methodology.MethodElectronic databases MEDLINE, Embase, CINAHL (Cumulative Index to Nursing and Allied Health Literature), and Cochrane were searched for relevant studies (all languages) using a search strategy. Two researchers independently screened the results and assessed the quality of the studies.ResultsSixty-three international studies were identified. Six main themes relating to barriers and facilitators emerged from an analysis of these studies. The main themes were: training; knowledge and awareness; communication; fear and embarrassment; involvement in healthcare decision-making; and time. All the themes were underpinned by the need for greater care, dignity, respect, collaborative relationships, and reasonable adjustments. Opposing barriers and facilitators were identified within each of the main themes.ConclusionAdolescents and adults with intellectual disabilities and/or autism experience several barriers to accessing and utilising primary health care. The findings highlight the reasonable adjustments and facilitators that can be implemented to ensure that these individuals are not excluded from primary health care.

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Section: Resultsmentioning

confidence: 99%

Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review

Doherty¹,

Atherton

Boland³

et al. 2020

BJGP Open

129

View full text Add to dashboard Cite

show abstract

“…A general lack of understanding and misconceptions about ASD have been found in both health care and broader contexts, contributing to families' experiences of social stigma (Drainoni et al, 2006;Hoogsteen and Woodgate, 2013;Lutz et al, 2012;McGonigle et al, 2014;Martin, 2012;Quirantes, 2009;Wnoroski, 2008;Woodgate et al, 2008). In a study by Lum et al (2014), stigmatizing behavior on the part of HCPs proved to be a barrier to patient disclosure. In an effort to manage stigma, individuals and their families have employed strategies that allow them to make decisions around the delivery of their information (Birenbaum, 1970;Farrugia, 2009;Goffman, 1963;Green et al, 2005;Herman, 1993;Schneider and Conrad, 1980;Tröster, 1997;Voysey, 1972).…”

Section: Introductionmentioning

confidence: 99%

Parent and health care provider perspectives related to disclosure of autism spectrum disorder in pediatric emergency departments

Muskat

Greenblatt

Nicholas

et al. 2016

Autism

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Children and youth with autism spectrum disorder presenting in emergency departments face potential cognitive, sensory, and behavioral challenges, and it is crucial for providers to be aware of their unique needs. However, disclosure of a child's autism spectrum disorder can be complex for parental caregivers and is not well understood. This qualitative study utilized a grounded theory approach and analyzed data from 28 parents and 16 health care providers related to autism spectrum disorder disclosure within two Canadian pediatric emergency departments. Study results indicated that participants identified benefits and risks of disclosure. Encouraging understanding, expediting service, and preparing health care providers for working with children with autism spectrum disorder were identified as benefits of disclosure. Risks related to disclosure included potential negative attributions toward the children and parental discomfort in disclosing a diagnosis in front of the children. Parents discussed the health care encounters they experienced following disclosure and provided recommendations for improving the disclosure process in the emergency department. It is recommended that future research explore the experiences of parents who choose not to disclose their child's autism spectrum disorder. Greater awareness of the disclosure experience and the development of resources and tools to support communication between parents and health care providers are also recommended.

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“…Therefore, the current tool aimed to fill this gap and address barriers at each level. It is important to note that there was some convergence with items from previously developed tools (e.g., Bultas, McMillin, & Zand, 2016 ; Lum, Garnett, & O’Connor, 2014 ; Raymaker et al, 2016 ). This is unsurprising as there are a finite number of ways to ask about a particular barrier, as evinced by the convergence observed across tools included in the previous systematic review ( Walsh et al, 2020 ; e.g., I don’t have insurance coverage - Raymaker et al, 2016 ; Insurance benefits never/always cover child’s needs - Ahmedani & Hock, 2012 ; Difficulties related to insurance coverage - Kuhlthau et al, 2016 ; no insurance – Chiri & Warfield, 2012 ).…”

Section: Discussionmentioning

confidence: 99%

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

Walsh

Lydon

Hehir

et al. 2020

Research in Autism Spectrum Disorders

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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;

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Health communication: A pilot study comparing perceptions of women with and without high functioning autism spectrum disorder

Cited by 38 publications

References 53 publications

Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review

Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review

Parent and health care provider perspectives related to disclosure of autism spectrum disorder in pediatric emergency departments

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

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