Shared Decision Making and Treatment Decisions for Young Children With Autism Spectrum Disorder

Levy, Susan E.; Frasso, Rosemary; Colantonio, Stephanie; Reed, Hayley; Stein, Gail; Barg, Frances K.; Mandell, David S.; Fiks, Alexander G.

doi:10.1016/j.acap.2016.04.007

Cited by 66 publications

(53 citation statements)

References 29 publications

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“…Children with ASD may experience negative reactions to particular sensory stimuli in their environments (e.g., bright lights, beeping of machines, and physical touch), a symptom that was only recently added to the criteria for ASD with the release of the Diagnostic and Statistical Manual of Mental Disorders , Fifth Edition (American Psychiatric Association, ; Muskat et al, ). Other characteristics of certain medical settings that aggravate child sensitivities include the presence of many HCPs in a treatment room, long wait times, and the fast pace of office or department (Kopecky et al, ; Levy et al, ; Muskat et al, ). Parents reported that they feel rushed and that their visits are not long enough to discuss all their concerns (Levy et al, ).…”

Section: Resultsmentioning

confidence: 99%

“…Parents also sometimes feel that HCPs do not listen to and support them (Carbone, Farley, & Davis, ; Levy et al, ; van Tongerloo, van Wijngaarden, van der Gaag, & Lagro‐Janssen, ). Some parents believe this is due to a lack of interest or time on the part of the physician, and this can make parents feel helpless (Strunk et al, ).…”

Section: Resultsmentioning

confidence: 99%

“…(American Psychiatric Association, 2013; Muskat et al, 2015). Other characteristics of certain medical settings that aggravate child sensitivities include the presence of many HCPs in a treatment room, long wait times, and the fast pace of office or department (Kopecky et al, 2013;Levy et al, 2016;Muskat et al, 2015). Parents reported that they feel rushed and that their visits are not long enough to discuss all their concerns (Levy et al, 2016).…”

Section: Diagnostic and Statistical Manual Of Mental Disorders Fifthmentioning

confidence: 99%

“…ASD is characterized by difficulty with social communication as well as restricted or repetitive behaviour or interests (American Psychiatric Association, ). Children with ASD often have co‐morbid developmental, psychiatric, and medical conditions, such as gastrointestinal symptoms, epilepsy, and seizures (Levy et al, ). Children with ASD are more likely to have these conditions, as well as asthma and food allergies, than children without ASD (Schieve et al, ).…”

Section: Introductionmentioning

confidence: 99%

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Medical care experiences of children with autism and their parents: A scoping review

Wilson¹,

Peterson

2018

Child

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Children with autism spectrum disorder (ASD) and their families may benefit from the provision of additional supports in health care settings, particularly when preparing for and attending medical appointments. This review examined literature that describes experiences in medical care settings from the perspective of patients under age 18 with ASD and their caregivers. A scoping review was conducted to examine the experiences of children with ASD and their families in medical care settings. Twenty-nine studies meeting inclusion criteria were identified and reviewed. The review indicated a number of challenges (e.g., parent-reported problems in parent-provider communication and overwhelming environments) as well as factors that facilitate positive experiences (e.g., providing positive reinforcement and explaining exam steps) during medical appointments. Children with ASD and their families are faced with many challenges while receiving care in medical settings. The present review identified many challenges families face, as well as facilitators of positive experiences. Understanding the unique experiences of patients with ASD and their parents will help to improve experiences in medical care settings for children, caregivers, and health care providers.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Diagnostic and Statistical Manual Of Mental Disorders Fifthmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Medical care experiences of children with autism and their parents: A scoping review

Wilson¹,

Peterson

2018

Child

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“…Within the broader context of shared treatment decision-making, research on the perspectives of both parents and providers of children with ASD regarding CHA use reinforces that CHA can be a divisive for families and providers. 32 In addition, research on provider perspectives of CHA suggests that a majority of providers encourage the use of some CHA for ASD but may want additional training on CHA. 33 Increased provider training regarding CHA and ASD may, consequently, be help promote disclosure.…”

Section: Discussionmentioning

confidence: 99%

Parent disclosure of complementary health approaches used for children with autism spectrum disorder: Barriers and facilitators

Lindly

Thorburn

Heisler

et al. 2017

Complementary Therapies in Medicine

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Background and Objectives Complementary health approaches (CHA) are widely used among children with autism spectrum disorder (ASD). As part of shared treatment decision-making, healthcare providers are encouraged to discuss CHA with parents of children with ASD. Yet prior research suggests that parents often do not disclose CHA used for children, and their reasons for nondisclosure are poorly understood. We, therefore, aimed to identify barriers and facilitators to parent disclosure of CHA used for children with ASD. Design and Setting In-depth interviews were conducted with 31 parents who reported that they were currently using CHA for their child’s ASD in Denver, Colorado or Portland, Oregon. Results We used content analysis to identify six main themes indicating that the following factors play a role in disclosure: parents’ drive to optimize their child’s health, parent self-efficacy discussing CHA with healthcare providers, parent beliefs about the effectiveness of CHA, parent-provider relationship quality, provider attitudes and knowledge regarding CHA and ASD, and visit characteristics. Conclusions Study findings suggest that family and health system factors, together, influence parent disclosure of CHA used for children with ASD. Multifaceted intervention concurrently targeting the CHA-related knowledge, beliefs, and self-efficacy of parents whose children have been recently diagnosed with ASD, in addition to the CHA-related attitudes and knowledge of their healthcare providers may promote disclosure and shared treatment decision-making about the use of CHA.

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Shared decision-making interventions for people with mental health conditions

Aoki

Yaju

Utsumi

et al. 2022

Cochrane Database of Systematic Reviews

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Shared Decision Making and Treatment Decisions for Young Children With Autism Spectrum Disorder

Cited by 66 publications

References 29 publications

Medical care experiences of children with autism and their parents: A scoping review

Medical care experiences of children with autism and their parents: A scoping review

Parent disclosure of complementary health approaches used for children with autism spectrum disorder: Barriers and facilitators

Shared decision-making interventions for people with mental health conditions

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