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Children with autism spectrum disorder in high technology medicine environments: a qualitative systematic review of parental perspectives
Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare. Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science.ORCID iD: 0000-0003-2373-5483
Jönköping University, School of Health and Welfare, HHJ, Department of Clinical Diagnostics. Jönköping University, School of Health and Welfare, HHJ. CHILD.ORCID iD: 0000-0003-2500-190x
Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.ORCID iD: 0000-0001-7153-8543
Jönköping University, The University Library.ORCID iD: 0000-0003-2621-6080
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2024 (English)In: Systematic Reviews, E-ISSN 2046-4053, Vol. 13, no 1, article id 34Article, review/survey (Refereed) Published
Abstract [en]

Background: Children with autism spectrum disorders are frequent visitors to high technology environments, and their needs may differ from those of their typically developed peers. Procedures in high technology environments can constitute a challenge for these children and their parents since the environment presents many challenges relevant to the child’s impairments. This systematic review aimed to explore the experiences of children with autism spectrum disorders and their parents during procedures in a high technology environment. Methods: The following sources were searched for this systematic review: Cochrane CENTRAL Trials, CINAHL, Dentistry and Oral Sciences Source, MEDLINE, PsycINFO, Scopus, and Web of Science Core Collection. The search terms included variants of the following concepts: (1) children with autism spectrum disorder and/or their parents and (2) anesthesia or radiographic departments. Publications were not limited by date or study design. Result: Out of 13,389 bibliographic records, nine studies were eligible for synthesis. After another search in October 2022, one additional study was eligible for synthesis.None of the studies reported children’s experiences, and all ten reported their parents’ experiences. Only one study was conducted in a radiographic context. Parents’ experiences were both positive and negative and were categorized into two main categories: (1) challenges in a new environment and (2) health care professionals’ approaches. Conclusion: Studies describing children’s experiences with procedures in high technology environments are lacking. The parents described a need for health care professionals to work in structured ways with their child and to be able to make suitable adaptations. Systematic review registration: This systematic review was registered in advance on the Open Science Framework, https://doi.org/10.17605/OSF.IO/5TXWJ .

Place, publisher, year, edition, pages
BioMed Central (BMC), 2024. Vol. 13, no 1, article id 34
Keywords [en]
Autism spectrum disorders, Children, Experiences, High technology environments, Parents, Procedures, article, child, Cochrane Library, dentistry, health care personnel, human, pharmaceutics, PsycINFO, systematic review, Web of Science
National Category
Nursing
Identifiers
URN: urn:nbn:se:hj:diva-63440DOI: 10.1186/s13643-023-02440-wScopus ID: 2-s2.0-85182858966Local ID: GOA;;933590OAI: oai:DiVA.org:hj-63440DiVA, id: diva2:1832615
Available from: 2024-01-30 Created: 2024-01-30 Last updated: 2024-05-08Bibliographically approved
In thesis
1. Finding a pathway – through a procedure in a high-technology environment for a child with an autism spectrum disorder from the perspectives of parents and healthcare professionals
Open this publication in new window or tab >>Finding a pathway – through a procedure in a high-technology environment for a child with an autism spectrum disorder from the perspectives of parents and healthcare professionals
2024 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

This thesis framed in the area of disability research describes the pathway for a child with autism spectrum disorder (ASD) through a procedure in a high-technology environment, anaesthesia or radiographic procedures from the perspectives of parents and healthcare professionals. Visiting healthcare services for such procedures can be challenging for a child with ASD partially because of all the stressors in the environment but also because of the preparation phase and the interruptions in the daily routines. Finding the most suitable pathway puts high demands on parents and healthcare professionals and the organisation.

This thesis aims to explore and deepen the understanding of the pathway of a child with ASD through a procedure in a high-technology environment from the perspectives of parents and healthcare professionals.

Four studies with different methods were conducted to achieve this overall aim, and the four studies had sub-aims connected to the overall aim. Study I explored the parent’s experience of procedures in the high-technology environment together with their child with ASD. Data were collected by a systematic literature review and were obtained from ten studies describing the parents’ experiences. Studies II and III used critical incident technique (CIT) to identify healthcare professionals’ different experiences of situations and actions when leading a child with ASD through a procedure. Twenty healthcare professionals were interviewed, and the interviews revealed over five hundred situations and actions. The situations and actions were then clustered and analysed separately. In Study IV, the parents described the path through a procedure from their own perspective and also from the child’s perspective. The analysis was conducted using reflexive thematic analysis.

The findings revealed the complexity of leading a child with ASD through a procedure, underscoring the interplay between the child's impairment and the demanding environment. Parents expressed a profound sense of responsibility for their child's well-being during procedures, and potential consequences of the procedure for the child. Healthcare professionals described a challenge in those situations in relation to the child, the parents, and organisational structures. Healthcare professionals have a great role in facilitating the child’s progress during a procedure in high-technology environments, and in collaboration with the parents the best outcome can be achieved.

Through the lens of the Person Process Context Time model (PPCT model) the findings contribute to a deeper understanding of the complexity of leading a child with the disabilities associated with ASD through an environment full of sensory stimuli. Additionally, the findings can contribute as a tool for healthcare professionals in such situations. The healthcare professionals also need to be aware of the burden and loneliness the parents feel in those situations and the tools they require to navigate through the procedure. Furthermore, this thesis underscores the importance of initiating discussions around the use, impact, and consequences of physical restraint during those procedures.

Place, publisher, year, edition, pages
Jönköping: Jönköping University, School of Health and Welfare, 2024. p. 75
Series
Hälsohögskolans avhandlingsserie, ISSN 1654-3602 ; 135
Keywords
children with autism, parents, healthcare professionals, high-technology environment, procedures, experiences
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-64162 (URN)978-91-88669-45-2 (ISBN)978-91-88669-46-9 (ISBN)
Public defence
2024-05-31, Forum Humanum, School of Health and Welfare, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2024-05-08 Created: 2024-05-08 Last updated: 2024-05-08Bibliographically approved

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Pettersson, EmelieMøller Christensen, BeritGimbler Berglund, IngalillNylander, ElisabethHuus, Karina

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