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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., (© 2023 The Authors. Child: Care, Health and Development published by John Wiley & Sons Ltd.)

Background: Children with intellectual disabilities (IDs) are vulnerable and participate less in everyday activities compared to their peers with typical development. This study aimed to identify barriers and facilitators related to the participation in everyday activities of children with IDs in China., Methods: Twenty semi-structured interviews were conducted with primary caregivers of children with IDs from special schools in Tianjin, China. The data were transcribed and analysed using inductive qualitative content analysis., Results: Four categories of barriers to participation in everyday activities for children with IDs were identified: insufficient knowledge, attitudes and skills in primary caregivers; ID-related characteristics of children; stigma and Chinese culture; and lack of support from society. Four categories describing facilitators of participation in everyday activities for children with IDs were also identified: the optimistic attitude of the primary caregiver; adequate family support; active environment in school and policy; and attractive characteristics of children with IDs., Conclusions: The findings in this study add knowledge on important barriers and facilitators affecting the participation of children with IDs in everyday activities in China. The primary caregivers' voices need to be heard by government and society. Appropriate and effective changes in family-oriented services and the legal, social, political and economic context of the child welfare management system for the scale-up of improving participation should be implemented for children with IDs., (© 2022 The Authors. Child: Care, Health and Development published by John Wiley & Sons Ltd.)

Introduction: Adolescents need support from family, friends, and teachers to increase their involvement in everyday life. Their environment and their own characteristics also influence their ability to participate in an everyday supportive environment., Aim: The aim of the study was to investigate patterns of support from parents, teachers, and very important persons such as peers to the ability of adolescents to participate in everyday life, as well as the importance of interpersonal relations as experienced by the adolescents., Method: The study has a cross-sectional design. The data compiled and analysed in this study are part of a longitudinal study of adolescents and their development into adults-LoRDIA (Longitudinal Research on Development In Adolescence). A combination of person- and variable-oriented design was used to capture patterns of support., Results: Adolescents with a complicated home situation and low economic prerequisites who received little support from parents and friends participated to a lower degree in home activities. A substantial number of these adolescents had self-reported neurodevelopmental disorders and, as a group, were more often exposed to harassment. However, these adolescents participated to a higher extent in school activities, although they received little support from the teachers. The adolescents who received most support from parents and teachers were those with a country of origin other than Sweden and those who lived with both of their parents and had more siblings than average. However, this did not mean that they participated to a higher extent in home and school activities., (© 2019 John Wiley & Sons Ltd.)

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., (© 2016 John Wiley & Sons Ltd.)

Background: Besides the right to freedom, human rights can be seen as a basic requirement also for the maintenance of human dignity and the opportunity to thrive - particularly in the case of children with disabilities. It is imperative to explore primary caregivers' awareness of the human rights of their children with intellectual disabilities in view of the role they may play in either facilitating or restricting these rights. This paper explores the awareness of 219 primary caregivers of the human rights of their children with intellectual disabilities., Method: A descriptive survey design was used with a custom-designed questionnaire that employed a deductive content analysis based on the articles of the United Nations Convention on the Rights of a Child. Comparisons were drawn between the awareness of primary caregivers from urban and those from rural areas., Results: The majority (85.5%) of participants agreed that their child with intellectual disability had rights. Three broad kinds of right were mentioned (in descending order): provision rights, protection rights and participation rights. Participants from both urban and rural areas mentioned education (a provision right) most frequently. However, participants from urban areas were more aware of the different rights that existed than were their counterparts from rural areas., Conclusion: Primary caregivers in both rural and urban areas are aware of the rights of their children with disabilities, although there are significant differences between them., (© 2016 John Wiley & Sons Ltd.)

Background: It has been stated that care for children with chronic health conditions tends to focus on condition-specific issues rather than how these children experience their health and everyday life functioning., Aim: The aim of this study was to explore children's experiences about a structured assessment of health-related quality of life applied during a patient encounter., Methods: Prior to the start of the study, a clinical intervention based on the questionnaire DISABKIDS Chronic Generic Measure (DCGM-37) was performed. A qualitative explorative design was chosen, and 25 children between 10-17 years of age were interviewed after the consultation at four different paediatric outpatient clinics. Data were analysed according to qualitative content analysis., Results: The results were twofold: children experienced that the assessment was providing them with insights about their health, which motivated them to make lifestyle changes. When outcomes were discussed and requested, the children felt encouraged., Conclusions: The use of an assessment of health-related quality of life may promote insights about health and encourage children with chronic health conditions to discuss their outcomes with healthcare professionals., (© 2016 John Wiley & Sons Ltd.)

Background: A child rights-based approach to research articulates well with Article 12 of the United Nations Convention on the Rights of the Child (CRC) and highlights the importance and value of including children's own views about aspects that concern them. The aim of this study is to compare children with intellectual disability's own ratings (as self-raters) to those of their primary caregivers (as proxy raters) regarding human rights of children. The study also aims to establish whether there is an inter-rater agreement between the self-raters and proxy raters concerning Maslow's hierarchy of needs., Method: This study is nested in a larger study examining the human rights of children with intellectual disability in South Africa. In total, 162 children with intellectual disability from 11 schools across three provinces and their primary caregivers participated by answering parts of a Children's Rights Questionnaire (CRQ) developed by the researchers based on the United Nation's CRC. We compared the answers for six questions in the questionnaire that were addressed to self-raters (children) and proxy raters (primary caregivers) in the same way., Results: Questions regarding basic needs, such as access to clean water or whether the child had food to eat at home, were answered similarly by self-raters and proxy raters. Larger differences were found when self-raters and proxy raters were asked about whether the child had things or friends to play with at home. Socio-economic variables seemed to affect whether self-raters and proxy raters answered similarly., Conclusion: The results underscore the importance of promoting children's rights to express themselves by considering the opinions of both the children as self-raters and their primary caregivers as proxy raters - not only the latter. The results indicate that it is especially important to include children's own voices when more complex needs are surveyed. Agreement between self- and proxy ratings could be affected by socio-economic circumstances., (© 2015 John Wiley & Sons Ltd.)