Parent and Physician Perceptions of Medical Home Care for Children With Autism Spectrum Disorders in the State of Kentucky

Williams, P. Gail; Tomchek, Scott; Grau, Rebecca; Bundy, Myra Beth; Davis, Deborah Winders; Kleinert, Harold L.

doi:10.1177/0009922812460333

Cited by 16 publications

(7 citation statements)

References 19 publications

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“…Strunk et al () noted that some parents felt that providers treated them poorly and perceived them negatively as parents. Conversely, Williams et al () found that most parents of children receiving care in medical homes felt that HCPs provided a caring environment and were encouraging of parents' abilities.…”

Section: Resultsmentioning

confidence: 99%

“…Nonetheless, they still experience unmet needs, despite their higher rate of utilization, greater expenditure, and longer time spent in medical appointments (Cheak‐Zamora & Farmer, ; Kogan et al, ; Kuhlthau et al, ; Strunk et al, ; Williams et al, ; Zuckerman et al, ). Although having a medical home is associated with fewer unmet needs (Cheak‐Zamora & Teti, ; Kogan et al, ) and greater satisfaction with care (Zuckerman et al, ), most children with ASD do not have medical homes (Williams et al, ). In fact, they are less likely to have a medical home than children in general and children with other special health care needs (Brachlow, Ness, McPheeters, & Gurney, ; Kogan et al, ).…”

Section: Discussionmentioning

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: Discussionmentioning

confidence: 99%

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

Wilson¹,

Peterson

2018

Child

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confidence: 99%

“…In addition, the literature indicates that the core features of ASD in children can lead to behaviors that parents find challenging (Williams et al, 2012). These challenging behaviors can increase the level of anxiety and stress in parents of children with ASD in comparison to parents of children with other developmental disorders, and this may decrease parents' satisfaction with the effectiveness of intervention programs (Russell & McCloskey, 2016;Williams et al, 2012). This possibility is substantiated by research indicating that when parents are involved in the process of determining intervention goals for their children with ASD, the level of their anxiety and stress can decrease remarkably, and this can lead to increased satisfaction with the intervention programs used for their children (Bloch & Weinstein, 2009;Dunn, Cox, Foster, Mische-Lawson, & Tanquary, 2012;Guldberg et al, 2011).…”

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confidence: 99%

The intervention priorities of parents of children with autism spectrum disorders in Iran

Ghanadzade¹,

Waltz

Ragi³

2018

Research in Autism Spectrum Disorders

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When designing and implementing evidence-based programs for children with an autism spectrum disorder, the intervention priorities of parents are important criteria. Although studies in developed countries have explored parents' intervention priorities, there is a paucity of this kind of research in developing countries. This research explores the intervention priorities of 207 Iranian parents for their children with autism in Tehran, the capital of Iran. Participants with children between 2 to 21 years of age were asked to rate their intervention priorities from among 10 main categories. In addition, correlations between children's difficulties and parental intervention priorities were examined. The results indicate that building social communication skills was the highest intervention priority for parents of Iranian children with autism, a contrast to typical current service provision in Iran. The results also substantiated that presence of social communication difficulties and challenging behaviors in children are typically correlated with parents' intervention priorities. 1. Introduction The intervention priorities of parentsof children with an Autism Spectrum Disorder (ASD) are important: understanding these and incorporating them into treatment and support programs is likely to increase parental acceptance, participation and satisfaction, and these factors are likely to lead to better outcomes for children. However, the priorities of parents in developing and developed countries may differ. This research seeks to understand the treatment priorities of parents in Iran, and to compare these with parental priorities reported in similar studies completed in developed countries. A secondary aim is exploring whether there is a correlation between parents' intervention priorities and their child's ability level. Autism Spectrum Disorders are neurodevelopmental disorders that can be diagnosed by documenting difficulties in social communication skills and the existence of repetitive and stereotypical behavior (American Psychiatric Association, 2013). The most recent research literature indicates that the prevalence of ASD is increasing in most countries (Hill, Zuckerman, & Fombonne, 2015; Pellicano, Dinsmore, & Charman, 2014). This increase in prevalence is not believed to reflect a rise in incidence, but is instead derived from increased awareness and availability of diagnostic services (Rice et al., 2012). In Iran, the first study about the prevalence of ASD reported a rate of 6.26 in 10,000 (Samadi, Mahmoodizadeh, & McConkey, 2012), but a more recent study indicates that prevalence has reached 95.2 in 10,000 (Samadi & McConkey, 2015). Parents and professionals try hard to find more effective and evidence-based interventions for their children or clients with ASDs

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“…Research shows that various barriers have been identified in implementation [27,28]. Gaps have been uncovered between families' beliefs and the actual services received [29,30], including differences on care practices [31], professional insensitivity [32,33], and parental dissatisfaction with health care [34,35]. Parents' health concerns for CNDD also differ significantly from routinely addressed concerns during well-health visits [36].…”

Section: Introductionmentioning

confidence: 99%

Parental Perceptions of Family Centered Care in Medical Homes of Children with Neurodevelopmental Disabilities

Zajicek-Farber

Lotrecchiano

Long

et al. 2015

Matern Child Health J

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Life course theory sets the framework for strong inclusion of family centered care (FCC) in quality medical homes of children with neurodevelopmental disabilities (CNDD). The purpose of this study was to explore the perceptions of families with their experiences of FCC in medical homes for CNDD. Using a structured questionnaire, the Family-Centered Care Self-Assessment Tool developed by Family Voices, this study surveyed 122 parents of CNDD in a large urban area during 2010-2012. Data collected information on FCC in the provision of primary health care services for CNDD and focused on family-provider partnerships, care setting practices and policies, and community services. Frequency analysis classified participants' responses as strengths in the "most of the time" range, and weaknesses in the "never" range. Only 31 % of parents were satisfied with the primary health care their CNDD received. Based on an accepted definition of medical home services, 16 % of parents reported their CNDD had most aspects of a medical home, 64 % had some, and 20 % had none. Strengths in FCC were primarily evident in the family-provider partnership and care settings when focused on meeting the medical care needs of the child. Weaknesses in FCC were noted in meeting the needs of families, coordination, follow-up, and support with community resources. Improvements in key pediatric health care strategies for CNDD are recommended. CNDD and their families have multifaceted needs that require strong partnerships among parents, providers, and communities. Quality medical homes must include FCC and valued partnerships with diverse families and community-based providers.

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Parent and Physician Perceptions of Medical Home Care for Children With Autism Spectrum Disorders in the State of Kentucky

Cited by 16 publications

References 19 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

The intervention priorities of parents of children with autism spectrum disorders in Iran

Parental Perceptions of Family Centered Care in Medical Homes of Children with Neurodevelopmental Disabilities

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