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.

Introduction: Anxiety is often experienced by children undergoing health care procedures, and children with autism spectrum disorders (ADS) experience more anxiety than typically developed children. A prerequisite for obtaining an optimum procedure is firstly based on the health care provider’s knowledge about children with ASD, but may also depend on the use of guidelines. Two previous national surveys showed, that none radiology or paediatric departments and a minority of anaesthesiology departments throughout Sweden use specific guidelines when seeing children with ASD. Following, the purpose was to develop guidelines to use when caring for and preparing children with ASD in those settings.

Methods: A modified Delphi method was used, including19 experts identified from the two afore mentioned surveys. The questions considered in the process, proceeded from previous research and the results from the surveys. The experts’ responses regarding the importance of each item, were analysed and scrutinized between each round.

Results: The Delphi process resulted in guidelines consisting of 15 items and a checklist with 16 aspects. The items cover the areas: planning and involving parents, features in the environment, use of time, communication, thehealth care professionals. The checklist covers the child’spattern of communication, anxiety, sensory stimuli, special interests and likes/dislikes.

Conclusions: To obtain an optimum caring encounter when a child with ASD is seen in the preoperative and radiology setting, a meticulous planning is important and the environment should be adjusted for the needs of the child. To accomplish this, guidelines need to be in place and be followed.

To review the longitudinal trajectories – and the factors influencing their development – of mental health problems in children with neurodevelopmental disabilities. Systematic review methods were employed. Searches of six databases used keywords and MeSH terms related to children with neurodevelopmental disabilities, mental health problems, and longitudinal research. After the removal of duplicates, reviewers independently screened records for inclusion, extracted data (outcomes and influencing factors), and evaluated the risk of bias. Findings were tabulated and synthesized using graphs and a narrative. Searches identified 94,662 unique records, from which 49 publications were included. The median publication year was 2015. Children with attention deficit hyperactivity disorder were the most commonly included population in retrieved studies. In almost 50% of studies, trajectories of mental health problems changed by < 10% between the first and last time point. Despite multiple studies reporting longitudinal trajectories of mental health problems, greater conceptual clarity and consideration of the measures included in research is needed, along with the inclusion of a more diverse range of populations of children with neurodevelopmental disabilities.

Pain is among the most common effects of cancer and its treatment. Children and young people with cancer often consider pain from procedures and treatment to be the worst aspect of their illness. This study aimed to i) identify and describe knowledge and attitudes to pain and pain management amongst nurses working with children with cancer and ii) compare the perspectives on pain and pain management of nurses from UK, South Africa and Sweden. 106 nurses working with children with cancer in UK, South Africa and Sweden completed Salanterä’s (1999) questionnaire on nurses’ attitudes to pain in children. Nurses had good levels of knowledge and positive attitudes to pain management, with Swedish nurses’ having higher levels of knowledge and a more positive attitude to pain management than nurses from UK or South Africa. A high level of knowledge was correlated to a more positive attitude to pain management. Knowledge levels need to be improved to ensure more positive attitudes to pain management, especially for nurses in South Africa. Swedish nurses’ level of knowledge about non-pharmacological pain management strategies has scope for improvement. British nurses may need to focus more on the sociology and psychology of pain.

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.

Forty to sixty percent of all children having surgery experience preoperative anxiety. Preoperative anxiety is a risk factor for negative behavioural changes postoperative. It is of importance to find strategies in the interaction with the child to reduce anxiety. The overall aim was to describe CRNA's interaction with the child in relation to anxiety during anaesthesia induction and to describe the translation process of m-YPAS into Swedish and the testing of the psychometric properties in a Swedish context. In paper I an explorative qualitative approach with CIT was used and 32 CRNAs were interviewed. Experiences described were about the organisation which included effect of information, teamwork and time. Other experiences were grouped around interrelations such as, communication, meeting both anxious and calm children and experiences of use of physical restraint. Actions taken to reduce anxiety were optimizing the situation, as acting according to the situation, it could mean altering routines, though always without jeopardizing the safety of the child, preparing ahead and using distraction. Creating interpersonal interaction such as, creating contact, participation and using collaboration with the child, parents and colleagues. In paper II m-YPAS was translated into Swedish using cross cultural back translation. The psychometric properties of m-YPAS were tested in two phases. In phase I 52 children were assessed in real time by two SRNAs and one CRNA using m-YPAS and NAS. In phase II 98 video films of children were assessed by experienced CRNAs in the same way as in phase I. The psychometric properties of m-YPAS were good. Conclusion: In the interaction between CRNAs and the child, being flexible and sensitive to the child, taking the role of the child, and acting according to the need of the child were cornerstones in reducing preoperative anxiety and avoiding use of physical restraint. The m-YPAS can be used as an educational tool to enhance the anaesthetist's ability to interpret the child's anxiety. The m-YPAS is a valid and reliable assessment instrument to examine the efficiency of interventions and compare the result of research between cultures.

Att komma till ett sjukhus för en undersökning eller behandling kan vara en skrämmande upplevelse för barn. När de kommer till en främmad miljö som inte är anpassad för dem kan de uppleva känslor av osäkerhet, hjälplöshet och oro. Barn med autismsspektrumtillstånd (AST) har problem med kommunikation, social interaktion, är känsliga för sensoriska stimuli, till exempel ljud, ljus eller beröring, och är dessutom beroende av rutiner. Dessa barn utgör en utsatt grupp i den högteknologiska miljön inom sjukvården och detta gör att de löper en stor risk att ett besök inom denna miljö riskerar att bli en skrämmande upplevelse. Detta i sin tur kan leda till att barnen inte medverkar och besöket blir en upplevelse som ytterligare förstärker deras rädsla för sjukvården. Att möta barn med AST kan vara en utmaning för vårdpersonalen, där riktlinjer för omhändertagande kan vara en hjälp för att kunna ge en person-familjecentrerad omvårdnad men det är få anestesiavdelningar i Sverige som har strukturerade riktlinjer för omhändertagandet av barn med autismsspektrumtillstånd. Dessa barns besök behöver vara välplanerade och genomföras på ett sätt som tar hänsyn till det individuella barnets fungerande och behov. En förutsättning för att kunna ge dessa barn ett bra omhändertagande är att man vet i förväg att det är ett barn med denna diagnos som är planerad för en procedur. Har man denna kunskap kan man ta kontakt med föräldrarna och skräddarsy planeringen och vården efter barnets specifika behov. Det behövs också en kunskap hos personalen om autismspektrumtillstånd och hur man kan möta barn med denna funktionsnedsättning för att skapa en gott bemötande för dessa barn.

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.

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.

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.

Aim: To identify factors that influence nurses' pain management in children.

Method: A qualitative design was used. Twenty-one nurses working in one paediatric department were interviewed using semi-structured interviews. Data were analysed by means of content analysis.

Findings: The way nurses manage pain in children is affected by factors such as co-operation between nurses and physicians and between nurses and patients, children's behaviour, routines in the organisation, and the experience and knowledge of nurses.

Conclusion: Pain management in children could be improved through increased co-operation between nurses, physicians and parents. Planning time and good routines could facilitate pain management. Education about pain management and children's pain behaviour might also improve nurses' ability to manage pain in children.

Background: Participation in daily activities is expressed as a human right. Full participation of children with disabilities in daily activities creates optimal opportunities for learning and development. Previous studies have focused primarily on proxy ratings of participation of children with intellectual disabilities in daily activities. However, little is known about how the children rate barriers and facilitators to their participation in everyday activities. Objectives: To identify barriers to and facilitators for everyday activities as experienced by children with intellectual disabilities from low- and middle-income countries and high-income countries. The research questions were as follows: 'what barriers to participation do children with disabilities experience in everyday activities?' and 'what facilitators to participation do children with disabilities experience in everyday activities?' Method: A qualitative content analyses was used in this study, and individual interviews were conducted with 49 children with intellectual disabilities. The interviews were performed using pictures. The children also selected the most important activities and described in their own words the facilitators and barriers relevant to being able to perform the activities. Results: The most important activities were organised leisure activities, formal learning at school, taking care of other family members and family mealtimes. Self-reported barriers identified were personal functioning, social exclusion and lack of resources. The identified facilitators included satisfaction, personal capability, being included and having access to resources. Conclusion: These findings provide important knowledge about the factors to consider in the development of interventions, aimed at improving the participation of children with intellectual disabilities.

Purpose: The purpose of this study was to identify and describe Vietnamese nurse’s pain management in children.

Methods: A quantitative cross-sectional study using a questionnaire measuring 110 registered Vietnamese nurse’s perception of pain and pain management in children.

Results: The results showed that many nurses in Vietnam are using pain assessment instruments as well as non-pharmacological alleviations methods extensively. Vietnamese nurses had high levels of knowledge in physiology of pain. Nurses’ knowledge about the use of pain medication was correlated to attitudes. The higher level of knowledge the nurses had about pain medication, the more positive was their attitude towards pain management in general.

Conclusion: In conclusion, the most commonly used non-pharmacology pain alleviation method among the nurses was talking to the child and be close to the child. This method to attempt to relive pain is valuable as it doesn’t require any specific equipment. Vietnamese nurses had high levels of knowledge about physiology of pain.

Background: Research has shown that all children and adolescents have the right to participate in their everyday life. However, little is known about what impacts the participation of children and adolescents with disabilities living in low-and middle-income countries. Objective: The present study undertakes a scoping review of research to synthesise the current literature about barriers and facilitators to participation in everyday life for children and adolescents with disabilities living in lowland middle-income countries. Method: A scoping review was conducted. The databases Psyc INFO, MEDLINE, CINAHL, Pubmed, ERIC and African Wide information were searched for studies published between 2001 and April 2018. Data was analysed using deductive content analysis. The barriers and facilitators to participation were categorised into personal factors, social factors, environmental factors, and policy and programme factors. Result: In the end, 17 articles were included for data extraction as they mentioned barriers and facilitators to participation for children and adolescents with disabilities. Most of the reviewed studies reported on barriers to participation. Only one of the studies was performed in a country classified as a low-income country; all other studies were performed in middle-income countries. The results indicate that some factors, especially social factors, could be perceived as both facilitators and barriers to participation. Conclusion: There is a lack of studies describing barriers and facilitators in lowland middleincome countries. Barriers and facilitators in proximity to the child and family are most frequently described in the literature.

Aim  To describe nurses' experiences when caring for children in pain.

Background  Earlier studies have shown that nurses are key actors in pain management and that there is a need to focus on the nurses' own experiences of caring for children in pain.

Method  Semi-structured interviews were conducted with 21 nurses at one paediatric clinic. The data were analysed by means of content analysis.

Results  The interviews suggested that when a child's pain followed an expected pattern and they complied with treatment, the nurses trusted their knowledge and felt comfortable. On the other hand, in unpredictable situations the nurses felt fearful, powerless, abandoned and distrustful.

Conclusion  The nurses were comfortable in predictable situations, but if a situation was unpredictable, they felt they had lost control over it.

Implications for pain management  To reduce feelings of abandonment, work shifts should be organized so that more experienced nurses can work side by side with those who are less experienced. Pain assessment tools and guidelines for pain management should be introduced into the daily work, and systematic reflection should be used for nurses' professional development.

Objective

To conduct a scoping review on the literature on visual aids in health education for persons with low-literacy.

Methods

A scoping review methodology was employed. Pre-defined selection criteria identified 47 studies for inclusion. Data were extracted in relation to: (a) definitions of low-literacy and health literacy, (b) population studied, (c) research country, (d) consent procedures, (e) visual aids used, (f) development of visual aids, and (g) targeted outcomes.

Results

Visual aids developed with persons with low-literacy demonstrated statistically significant improvements in health literacy outcomes, with benefits in medication adherence and comprehension also reported. Pictograms and videos were the most effective visual aids. Only one study adapted consent procedures for low-literacy participants.

Discussion

Visual aids in health education materials may benefit persons with low-literacy levels, but large gaps in the research base are evident. Experimental research in low- and middle-income countries, with a particular focus on consent for participants with low-literacy is needed.

Practice implications

Visual aid design needs to include stakeholders. Consent procedures and decision-making need to be specifically adapted for participants with low-literacy.

Background: High technological environments can be challenging for children with autism spectrum disorders (ASD), because they can be sensitive to new environments, new faces and changes in daily routines. Those children are frequent visitors in those settings, and due to their heightened healthcare needs and their comorbidities, it could constitute a challenge for healthcare professionals to encounter those children. Exploring the healthcare professionals' experiences can contribute to facilitate the procedure for a child with ASD. Method: A qualitative descriptive retrospective design with a critical incident technique has been used to capture the situations. Twenty healthcare professionals were interviewed about situations affecting the procedure in the high-technology environments, defined as anaesthesia and radiology departments. Result: The findings revealed both favourable situations and unfavourable situations affecting the procedure in the high-technology environment. The situations described by the healthcare professionals often involved their interactions with the child and the parents. The interactions were influenced by the parents' attitudes to the procedure and also the healthcare professionals and the parents' different expectations on the procedure. Other experiences described by the healthcare professionals were the unpredictability in different situations. Those situations were related to the child's unpredictable behaviour in those environments and also to the unpredictable effect of premedication provided to the child. Moreover, the result revealed the organizational prerequisites for facilitating a procedure, such as not feeling any time pressure when leading a child through a procedure. Conclusions: Interactions between healthcare professionals, children with ASD and parents in the high-technology environment are complex. Unpredictability characterizes situations when leading a child with ASD through a procedure. This place demands on the healthcare professional, the environment and the organization.

PURPOSE: To explore actions taken by health care professionals during a procedure with a child with autism spectrum disorder.

DESIGN AND METHOD: Critical incident technique was used, which is a technique with a qualitative descriptive retrospective design, to capture situations experienced by health care professionals during a procedure in an anaesthesia or radiology department. Health care professionals from anaesthesia and radiology departments (n = 20) were interviewed about situations affecting the procedure.

RESULTS: The findings revealed a broad range of actions (n = 205) taken by the health care professionals during a procedure with a child with autism spectrum disorder. The analysis resulted in two main areas: Finding a way to facilitate a procedure in a high technology environment and Creating a trustful relationship with a child with autism spectrum disorder. The most common action in the first area, was to adjust routines. In the second area the most common action was to take one step at a time and not force or rush the child during the procedure.

PRACTICE IMPLICATIONS: The health care professionals used a broad range of different actions to facilitate a procedure in the high technology environment for a child with ASD, which indicates the need for a flexible approach. The actions taken included both adjustments to the environment and enhancing interactions with the child.

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 .

Background:

The modified Yale Preoperative Anxiety Scale (m-YPAS) is an observational behavioral checklist that has been widely used as an indicator of pre-operative anxiety in children. The present study describes the translation process of m-YPAS into Swedish and the testing of its reliability and validity when used with Swedish children.

Methods:

The questionnaire was translated using standard forward-back-forward translation technique. The validation process was divided into two phases: a pilot study with 61 children as a first version and a test of a final version with 102 children.

Results:

The reliability tested with Cronbach's alpha was acceptable to good. Interrater reliability analyzed with weighted kappa was acceptable to good with Students Registered Nurse Anesthetists and Certified Registered Nurse Anesthetist (CRNA) as evaluators (phase 1) and good to excellent with CRNA's very experienced in child anesthesia (phase 2). Both concurrent and constructed validity could be demonstrated.

Conclusion:

This validation study of the Swedish version of the m-YPAS shows good consistency, interrater validity, and construct validity when used by experienced assessors.