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Perioperative and anesthesia guidelines for children with autism: A nationwide survey from Sweden
Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.ORCID iD: 0000-0001-7153-8543
Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.ORCID iD: 0000-0003-4599-155X
Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.ORCID iD: 0000-0001-8596-6020
Jönköping University, School of Health and Welfare, HHJ, Dep. of Natural Science and Biomedicine. Jönköping University, School of Health and Welfare, HHJ. Biomedical Platform.ORCID iD: 0000-0002-9819-0468
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2016 (English)In: Journal of Developmental and Behavioral Pediatrics, ISSN 0196-206X, E-ISSN 1536-7312, Vol. 37, no 6, 457-464 p.Article in journal (Refereed) Published
Abstract [en]

Objective: 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 through descriptive statistics. These guidelines and comments on routines used in these departments were analyzed inspired by conventional content analysis.

Results: Seven of the 68 anesthesia departments and none 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.

Place, publisher, year, edition, pages
2016. Vol. 37, no 6, 457-464 p.
Keyword [en]
autism spectrum disorder, children with ASD, guidelines, preparation, anesthesia, perioperative settings
National Category
Pediatrics
Identifiers
URN: urn:nbn:se:hj:diva-29779DOI: 10.1097/DBP.0000000000000289ISI: 000379783300004PubMedID: 27011004Scopus ID: 2-s2.0-84961390460OAI: oai:DiVA.org:hj-29779DiVA: diva2:919689
Available from: 2016-04-14 Created: 2016-04-14 Last updated: 2017-03-28Bibliographically approved
In thesis
1. Developing guidelines in nursing care of children with Autism Spectrum Disorder in high technology health care settings
Open this publication in new window or tab >>Developing guidelines in nursing care of children with Autism Spectrum Disorder in high technology health care settings
2017 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Introduction. The high technology environment such as a radiology and anaesthesia department in a typical health care setting can many times be a frightening environment for children. Children with neurodevelopmental disorders, such as Autism Spectrum Disorder (ASD), have problems with communication and social interaction. They are dependent on routines and can have higher sensitivity to sensory stimuli than other children. These children are one group who constitutes special challenges in reducing anxiety and creating participation in a high technology environment. This can make them prone to frightening encounters in health care settings if not cared for with special consideration.

Aim: The overall aim of this thesis was to audit and enhance the care of children in a high technology environment in the health care system with a focus on children with Autism Spectrum Disorder.

Methods: A descriptive design was used with both qualitative and quantitative methods. In Study I, 32 nurse anaesthetists were interviewed to explore the actions and experiences of caring for children in a high technology environment using a qualitative method, known as the Critical Incident Technique (CIT). In the two following studies (Study II, III) a cross-sectional design was used and two national surveys were performed to obtain knowledge on the status in Sweden regarding the care of children with ASD in high technology environments. Sixty-eight anaesthesia departments, 38 paediatric departments and 86 radiology departments responded to the survey. Descriptive statistic was used for the answers apart from the comments part of the questionnaire where qualitative content analysis was used. Due to the limited existence of guidelines in these environments, the creation ofevidence-based guidelines was performed in Study IV, using a Delphi method. The Delphi study was based on information gleaned from the previous studies and from the literature, and 21 experts identified in Study II and III were the expert panel developing the guidelines.

Result: Nurses identified children with special needs such as children with ASD as a vulnerable group in a high technology environment (Study I). Seven departments in the anaesthesia context had guidelines for caring for children with ASD in the perioperative context. In the other departments, the care of children with ASD was dependent on the knowledge of the nurse presently working there (Study II). None of the radiology departments in Sweden had guidelines on how to care for children with ASD going through a radiographic examination without anaesthesia (Study III). As a result of Study I, II and III, the need for structured guidelines for caring for children with ASD in a high technology context was identified and a set of guidelines and a checklist was created. The guidelines relate to the organisational structure for the care of children with deficits in social interaction, communication, sensory sensitivity and dependence on routines. The checklist relates to gleaning information about the specific child to be able to give person-centred care based on the specific characteristic of the child (Study IV).

Conclusion: Nurses working in a high technology environment in health care have diverse experiences of preventing anxiety in children with ASD coming for a challenging procedure. There are a limited number of evidence-based guidelines to decrease anxiety and to create participation in this group ofchildren. Evidence-based guidelines were created as a tool for enhancing person-centred care in a high technology environment for this group of children. The fact that several problems are assembled under one disorder makes ASD a useful condition to have as a basis for formulating national guidelines. Guidelines that cater for the care of children with ASD in a high technology environment using a person-centred approach may also extend to the care for children with other neurodevelopmental disorders that exhibit some of the same problems as children with ASD.

Place, publisher, year, edition, pages
Jönköping: Jönköping University, School of Health and Welfare, 2017. 98 p.
Series
Hälsohögskolans avhandlingsserie, ISSN 1654-3602 ; 079
Keyword
Anaesthesia, autism, children, guidelines, nurses, participation, radiology
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-35268 (URN)978-91-85835-78-2 (ISBN)
Public defence
2017-04-28, Forum Humanum, Hälsohögskolan i Jönköping, Jönköping, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2017-04-06 Created: 2017-03-28 Last updated: 2017-04-10Bibliographically approved

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Gimbler Berglund, IngalillHuus, KarinaEnskär, KarinFaresjö, MariaBjörkman, Berit
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