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Developing guidelines in nursing care of children with Autism Spectrum Disorder in high technology health care settings
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
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 [en]
Anaesthesia, autism, children, guidelines, nurses, participation, radiology
National Category
Nursing
Identifiers
URN: urn:nbn:se:hj:diva-35268ISBN: 978-91-85835-78-2 (print)OAI: oai:DiVA.org:hj-35268DiVA: diva2:1085185
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
List of papers
1. Nurse anaesthetists' experiences with pre-operative anxiety
Open this publication in new window or tab >>Nurse anaesthetists' experiences with pre-operative anxiety
2013 (English)In: Nursing Children and Young People, ISSN 2046-2336, Vol. 25, no 1, 28-34 p.Article in journal (Refereed) Published
Abstract [en]

Aims To explore nurse anaesthetists’ experiences and actions when administering and caring for children requiring anaesthesia.

Method A qualitative design employing critical incident technique was used. Interviews were carried out with a purposeful sample of nurse anaesthetists (n=32). The nurse anaesthetists’ experiences were grouped into two main areas: organisation focused and interrelational focused. Actions were grouped into two main areas: optimising the situation and creating interpersonal interaction.

Findings The categories and subcategories of the nurses’ experiences appeared to influence the outcome for the child. The nurse anaesthetists’ first priority was to create an optimal environment and increase sensitivity in their interactions with the child.

Conclusion Sensitivity to the child and flexibility in altering actions are key strategies to avoid physical restraint.

Keyword
Anaesthesia, children’s surgery, nurse anaesthetists, pre-operative anxiety, peri-operative nursing
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:hj:diva-22671 (URN)10.7748/ncyp2013.02.25.1.28.s9537 (DOI)
Available from: 2013-12-12 Created: 2013-12-12 Last updated: 2017-03-28Bibliographically approved
2. Perioperative and anesthesia guidelines for children with autism: A nationwide survey from Sweden
Open this publication in new window or tab >>Perioperative and anesthesia guidelines for children with autism: A nationwide survey from Sweden
Show others...
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.

Keyword
autism spectrum disorder, children with ASD, guidelines, preparation, anesthesia, perioperative settings
National Category
Pediatrics
Identifiers
urn:nbn:se:hj:diva-29779 (URN)10.1097/DBP.0000000000000289 (DOI)000379783300004 ()27011004 (PubMedID)2-s2.0-84961390460 (Scopus ID)
Available from: 2016-04-14 Created: 2016-04-14 Last updated: 2017-03-28Bibliographically approved
3. Peri-radiographic guidelines for children with autism spectrum disorder: a nationwide survey in Sweden
Open this publication in new window or tab >>Peri-radiographic guidelines for children with autism spectrum disorder: a nationwide survey in Sweden
Show others...
2017 (English)In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 43, no 1, 31-36 p.Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: This study aimed to investigate the prevalence of guidelines and routines used nationwide when children with autism spectrum disorder (ASD) are taken care of and examined in a radiology department during a peri-radiographic process.

METHOD: A nationwide survey was compiled and distributed to 94 radiology departments throughout Sweden, i.e. those performing more than 100 000 radiographic examinations annually. The survey was designed as a web questionnaire with seven questions on possible guidelines and/or routines for the departments when preparing and taking care of children with ASD in conjunction with a radiographic procedure. The data were scrutinized, using descriptive statistics.

RESULTS: In total, 86 radiology departments responded to the survey (response rate 92%). Of those departments, 40 did not examine children with ASD. None of the departments included in the study had existing guidelines underpinning the routines when preparing and performing radiographic examinations for children diagnosed with ASD. A few departments (n = 8) would set aside more time for the procedure if it were known in advance that the child to be examined had been diagnosed with ASD. Also, some departments (n = 7) had radiographers who were more experienced in the care of children who would be appointed to perform examinations for children with ASD.

CONCLUSION: It is suggested that guidelines should be developed in order to increase interaction in a supportive way and decrease anxiety during the peri-radiographic process with children with ASD.

Place, publisher, year, edition, pages
Wiley-Blackwell, 2017
Keyword
autism spectrum disorder (ASD); children; guidelines; preparation; radiographic procedure
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-32259 (URN)10.1111/cch.12427 (DOI)000396460600003 ()27807874 (PubMedID)2-s2.0-84997047807 (Scopus ID)
Available from: 2016-11-10 Created: 2016-11-10 Last updated: 2017-04-21Bibliographically approved
4. Management of children with Autism Spectrum Disorder in the anesthesia and radiographic context
Open this publication in new window or tab >>Management of children with Autism Spectrum Disorder in the anesthesia and radiographic context
Show others...
2017 (English)In: Journal of Developmental and Behavioral Pediatrics, ISSN 0196-206X, E-ISSN 1536-7312, Vol. 38, no 3, 187-196 p.Article in journal (Refereed) Published
Abstract [en]

Objective: As a primary objective, this study purports to develop guidelines to better care for children with autism spectrum disorder (ASD), particularly regarding these children's preparation for anesthesia and radiologic procedures.

Methods: Using a Delphi method with an online distribution of questionnaire, guidelines for caring for children with ASD were created. Twenty-one participants were included in the expert panel. These participants were working with children with ASD in several anesthesia and radiology departments in Sweden. A list of items was created from a previous survey and the literature. In the first round, the items with <60% agreement were discarded. Items were merged, and a new list was created. Two more similar rounds were performed. In the last 2 rounds, 21 participants responded, and 80% agreement was considered to be consensus.

Results: The final guidelines consisted of 14 items and a checklist of 16 factors. The 5 areas covered by the items and the checklist were as follows: planning involving parents/guardians, features in the environment, and use of time, communication, and the health care professionals. The organization was important in making it possible for the health care professional to care for the individual child according to the child's needs. It was important to involve the parents/guardians to obtain knowledge about the functioning of the child.

Conclusion: A caring encounter involving a child with ASD in the anesthesia and radiology contexts requires advance planning, catered specifically to the individual needs of each child. To accomplish this, general knowledge regarding ASD and ASD's particular manifestation in the child entrusted to their care, is required from the health care workers. The organization needs to have structures in place to facilitate this process.

Place, publisher, year, edition, pages
Wolters Kluwer, 2017
National Category
Nursing Anesthesiology and Intensive Care
Identifiers
urn:nbn:se:hj:diva-35267 (URN)10.1097/DBP.0000000000000432 (DOI)000399585500004 ()28333847 (PubMedID)2-s2.0-85015965039 (Scopus ID)
Available from: 2017-03-28 Created: 2017-03-28 Last updated: 2017-05-12Bibliographically approved

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