AimTo compare children with and without neurodevelopmental disorders (NDD) in self-rated activity competence, participation, and the associations between activity competence and participation.MethodsThis cross-sectional study included 126 children with NDD and 115 without NDD, aged 6-12 years, who completed interviews with the Perceived Efficacy and Goal Setting System (PEGS) and Picture My Participation (PmP). Independent t-tests or Mann-Whitney U tests examined group differences in the PEGS and PmP scores. Correlation and regression analyses examined associations between the PEGS and PmP scores.ResultsChildren with NDD perceived lower physical competence than children without NDD, particularly in self-care (d = 0.80) and leisure (d = 0.66). The two groups did not differ in participation. Both groups demonstrated significant correlations between perceived activity competence and attendance (r = 0.21-0.49) and involvement (r = 0.19-0.53); significantly lower correlations were observed in children with NDD than those without (d = 0.22-0.28). Perceived activity competence significantly influenced attendance (beta = 0.365) and involvement (beta = 0.391).ConclusionsChildren with NDD perceived less competency than peers without NDD. Children's perceived activity competence is correlated bi-directionally with perceived participation. Clinicians can support competence to promote participation, or by supporting participation, the competence can be enhanced.

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.

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

Preliminary evidence of the content validity of the simplified Chinese version of ‘Picture My Participation’ (PMP-C; Simplified) items and reliability of the subscale attendance for the effectiveness of the use with children and youth in mainland China has been collected. However, evidence of construct validity for the instrument is not yet available.

Aim

To explore the construct validity of the attendance scale in PMP-C (Simplified).

Methods

A cross-sectional study using convenience sampling was conducted using PMP-C (Simplified) with a picture-supported interview for 290 children and youths aged 5–21 with and without ID in urban and rural areas of mainland China. Exploratory factor analysis (EFA) was performed using the principal component analysis (PCA) to analyse the resulting data.

Results

The EFA extracted five factors with eigenvalues greater than one and the cumulative contribution rate of factors accounted for 51.62% of the variance. All items had factor loadings above 0.50. The five subcomponents included: organised activities, social activities, taking care of others, family life activities and personal care and development activities.

Conclusion

The results of the factor analysis support the construct validity of the PMP-C (Simplified) attendance scale. It provides further psychometric evidence that PMP-C (Simplified) is a sound measure to assess participation for children and youths in mainland China.

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.

PURPOSE: To describe how parents with deafblindness experience parenting and family life.

MATERIALS AND METHODS: This a qualitative interview study. Fourteen parents with deafblindness were interviewed. Most were mothers (n = 10), with ages ranging between 33 and 57 years (mean 46 years). Interviews were transcribed, and the analysis was done using inductive qualitative content analysis.

RESULTS: The analysis resulted in the overarching theme, 'Living family life as a parent with deafblindness is not a walk in the park, but it is rewarding', and three subthemes, 'Being a competent parent despite having deafblindness', 'Needing support to fulfil my parental obligations' and 'Parenting is a struggle due to my deafblindness'. The results encompass many experiences and feelings and illustrate the complex reality of these parents in their parental role and family life.

CONCLUSION: The parents expressed their joy in being parents, but these feelings were intertwined with negative aspects of being unable to take on the desired responsibility or not receiving the necessary support. When requested, tailored support should be offered from social services, health care and rehabilitation services in order for parents with deafblindness to take on the parental responsibility they want and to be able to actively participate in family life.

The Short Warwick-Edinburgh Mental Well-being Scale (SWEMWBS) is effective in assessing positive aspects of mental health. Despite its advantages, little is known about group differences in the interpretation of SWEMWBS items across age groups, especially during the adolescence period. Hence, this study examined the psychometric properties of the SWEMWBS through Confirmatory Factor Analysis (CFA), Rasch analysis and network analysis of Swedish adolescents during the COVID-19 pandemic. A total of 5548 participants from the south of Sweden (i.e., Jönköping County) took part in this cross-sectional study through an online platform between September 2020 and October 2020. The CFA, Rasch (including differential item functioning, DIF) analysis and network analysis were used to examine the psychometric properties and measurement invariance of the SWEMWBS. The SWEMWBS had a unidimensional structure with robust psychometric properties. The CFA demonstrated measurement invariance across gender, school year and country of birth, which was also confirmed by Rasch DIF. Furthermore, considerable associations between the items of the SWEMWBS, general health and COVID-19 impact items were observed in network analysis. The SWEMWBS showed robust psychometric properties capable of assessing positive aspects of mental health and well-being among adolescents.

BACKGROUND: There is limited knowledge regarding the perceived participation of children with long-term health conditions in everyday activities. Children may have perceptions that differ from those of their primary caregivers. It is unclear whether children and caregivers rate their participation in everyday situations in the same way.

OBJECTIVES: We aimed to explore the level of agreement pertaining to perceived participation (attendance and involvement) and examine whether differences exist in the rank order of activities selected as the three most important between reports from children with long-term health conditions and their primary caregivers.

METHODS: The simplified Chinese version of the Picture My Participation (PMP-C; Simplified) was used in an interview with children with long-term health conditions; meanwhile, their primary caregivers finished the questionnaire independently. Data were analyzed using Wilcoxon tests, weighted kappa values, and Spearman's rank order correlation.

RESULTS: Children with long-term health conditions reported significantly lower attendance scores for six activity items (p < 0.05) and higher involvement scores for two activity items (p < 0.05) than their primary caregivers did. An overall slight to fair agreement in perceived participation was found at the child-caregiver dyad level, though differences in dyads were observed. A strong correlation was identified between the rank order of the most important activities for both groups (r = 0.81).

CONCLUSIONS: Differences may exist between the perceived participation of children with long-term health conditions, as reported by primary caregivers and the children themselves. The findings highlight that children with long-term health conditions exhibit unique views with respect to their perceived participation and have to be asked regarding their perceptions themselves.

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 was 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.

Background

Picture My Participation (PMP) is a valid instrument for measuring participation of children with disabilities, but it has not yet been evaluated for its content validity for children with autism spectrum disorders (ASD) in mainland China.

Aim

To explore the content validity of the simplified Chinese version of PMP (PMP-C; Simplified) for children with ASD and typically developing (TD) children in mainland China.MethodsA sample of children with ASD (n = 63) and TD children (n = 63) recruited through purposive sampling were interviewed using the PMP-C (Simplified), which contains 20 items of everyday activities. Children rated attendance and involvement on all activities and selected three most important activities.

Results

Children with ASD selected 19 of 20 activities as the most important activity while TD children selected 17 activities. Children with ASD used all scale points for rating attendance and involvement on all activities. TD children used all scale points for rating attendance and involvement in 10 and 12 of 20 activities, respectively.

Conclusion

The contents of 20 activities of PMP-C (Simplified) were relevant for all children and especially for children with ASD for assessing participation in community, school and home activities.