Parents' and professionals' perceptions of family-centered care for children with autism spectrum disorder across service sectors

Hodgetts, Sandra; Nicholas, David; Zwaigenbaum, Lonnie; McConnell, David

doi:10.1016/j.socscimed.2013.07.012

Cited by 103 publications

(86 citation statements)

References 17 publications

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“…22,23 As signatories to the United Nations Conventions on the Rights of the Child and Rights of Persons with Disabilities, governments have committed to assist parents in the performance of their childrearing responsibilities, and that persons with disabilities and their family members should receive the necessary assistance to enable families to contribute toward the full and equal enjoyment of the rights of persons with disabilities.…”

Section: Tablementioning

confidence: 99%

Maltreatment Risk Among Children With Disabilities

et al. 2017

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Section: Tablementioning

confidence: 99%

Maltreatment Risk Among Children With Disabilities

et al. 2017

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“…Furthermore, parents of disabled children face a number of well documented, out-of-the-ordinary challenges and hardships. These may include intensive and/or unpredictable childcare demands (McCann, Bull, and Winzenberg 2012;Plant and Sanders 2007;Sawyer et al 2011); difficulty accessing and navigating poorly resourced service systems (Browne et al 2013;Hodgetts et al 2013;Reichman, Corman, and Noonan 2008;Rodger and Mandich 2005); inflexible employment conditions and/or a lack of inclusive childcare options, leading to under-employment and financial hardship (Booth-Laforce and Kelly 2004;Freedman, Litchfield, and Warfield 1995;Grace et al 2008;Gordon, Rosenman, and Cuskelly 2007;Shearn and Todd 2001;Seltzer et al 2001); and the threat of negative social evaluation (e.g. of being judged to be a bad parent), on account of perceived child behaviour problems (Green 2007;Neely-Barnes et al 2011;Rapanaro, Bartu, and Lee 2008;Samuel, Hobden, and LeRoy 2011;Voysey Paun 2006;Woodgate, Ateah, and Secco 2008).…”

Section: Introductionmentioning

confidence: 99%

Benefit-finding or finding benefits? The positive impact of having a disabled child

McConnell

Savage

Sobsey

et al. 2014

Disability & Society

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This study investigated the positive impact of having a disabled child. The question addressed is whether the positive impacts reported by parents are better characterised as artefacts of stress-processing or transformational outcomes. A total of 538 parent-carers in Alberta, Canada completed a survey. Most parents reported benefits. Their reports were corroborated by measures of family cohesion and social support. Reported benefit had no observed stress-buffering effects. The findings suggest that reported benefits are not merely perceived for the sake of coping. These are better viewed as outcomes of a transformational life-learning process. When parent-carers report benefits, we should take them at their word.

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“…Put simply, when unaware to the child's disability, the nurses did not have the chance to specifically prepare for the child. Previous research has revealed that the absence of any structure in place for preparation, the knowledge and the attitude of the nurse can only help a child with ASD to a limited extent (17,24,29,30). This study's findings occasionally revealed special and experienced staff working with these children in certain departments.…”

Section: Discussionmentioning

confidence: 68%

Perioperative and Anesthesia Guidelines for Children with Autism: A Nationwide Survey from Sweden

Berglund

Huus

Enskär

et al. 2016

J Dev Behav Pediatr

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Perioperative and anesthesia guidelines for children with autism: A nationwide survey from Sweden. Developmental and Behavioral Pediatrics, 37(6) The overall aim of this study was to describe the current set of guidelines for the preparation and care for children with Autism spectrum disorder (ASD) in the perioperative setting across Sweden and explore the content of these guidelines in detail. Method: An online questionnaire was distributed to the chairpersons of all anesthesia departments (n= 68) and pediatric departments (n= 38) throughout Sweden. Follow-up phone calls were made to those departments that did not return the questionnaire. The presence of guidelines was analyzed via descriptive statistics. These guidelines and comments on routines used in these departments were analyzed inspired by conventional content analysis. Results: Seven out of the 68 anesthesia departments and none out of the 38 pediatric departments across Sweden have guidelines for preparing and/or administering care to children with ASD within the perioperative setting. From the guidelines and routines used, 3 categories emerge: "lacking the necessary conditions," "no extra considerations needed" and "care with specific consideration for children with ASD." These 3 categories span a continuum in the care. In the first category, the anesthesia induction could result in the child with ASD being physically restrained. In the last category, the entire encounter with the health care service would be adapted to the specific needs of the child. Conclusion: There is a lack of evidence-based guidelines specifically designed to meet the needs of children with ASD in the preoperative period in Sweden. Further research is needed to understand if children with ASD would benefit from evidence-based guidelines. Journal of

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Parents' and professionals' perceptions of family-centered care for children with autism spectrum disorder across service sectors

Cited by 103 publications

References 17 publications

Maltreatment Risk Among Children With Disabilities

Maltreatment Risk Among Children With Disabilities

Benefit-finding or finding benefits? The positive impact of having a disabled child

Perioperative and Anesthesia Guidelines for Children with Autism: A Nationwide Survey from Sweden

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