Barriers and facilitators to participation in everyday activities for children with intellectual disabilities in China.

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.

Healthcare professionals' experiences of situations during a procedure with a child with autism spectrum disorder in the high-technology environment.

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.

Participation of young people with disabilities and/or chronic conditions in low- and middle-income countries: a scoping review.

AIM: The purpose of this scoping review was to describe and map the literature available on the participation of young people (0-21y) with disabilities and/or chronic conditions living in low- and middle-income countries (LMICs). METHOD: A systematic search and selection process identified 78 publications. Descriptive data were extracted using a data-charting form, and studies were mapped using the family of participation-related constructs framework. RESULTS: The findings demonstrated that, although the published evidence is steadily increasing, the participation research on this vulnerable population is still either absent or very scarce in the majority of LMICs, and very little is known about the participation of children with chronic health conditions. Most studies included in this review focused on attendance or 'being there'. INTERPRETATION: Although attendance is an important aspect, more needs to be done to understand children's experiences or involvement while attending, thus capturing both dimensions of participation. WHAT THIS PAPER ADDS: There is an increasing trend in research on participation patterns of children with disabilities in low- and middle-income countries. Most research focuses on children's attendance, or 'being there'. We know very little about children's involvement, or experience, while attending daily activities.

Psychological distress and quality of life in Iranian adolescents with overweight/obesity: mediating roles of weight bias internalization and insomnia.

PURPOSE: To examine whether weight-related self-stigma (aka weight bias internalization) and insomnia are potential predictors of psychological distress and quality of life (QoL) among Iranian adolescents with overweight (OW)/obesity (OB). To examine whether weight-related self-stigma and insomnia are potential mediators in the relationship between excess weight and health outcomes of distress and QoL. METHODS: All participants (n = 934; 444 males; mean age = 15.7 ± 1.2 years; zBMI = 2.8 ± 1.0) completed questionnaires on weight-related self-stigma and insomnia at baseline. Six months later, they completed questionnaires on psychological distress and QoL to assess health outcomes. Relationships among variables were tested using mediation analyses with bootstrapping method. RESULTS: Weight-related self-stigma significantly mediated the effects of zBMI on psychological distress (effect = 0.22; bootstrapping SE = 0.09; 95% CI = 0.08, 0.45), psychosocial QoL (effect = - 0.64; bootstrapping SE = 0.19; 95% CI = - 1.10, - 0.32), and physical QoL (effect = - 1.35; bootstrapping SE = 0.54; 95% CI = - 2.43, - 0.26). Insomnia also significantly mediated the effects of zBMI on psychological distress (effect = 2.18; bootstrapping SE = 0.31; 95% CI = 1.61, 2.81), psychosocial QoL (effect = - 0.89; bootstrapping SE = 0.33; 95% CI = - 1.60, - 0.28), and physical QoL (effect = - 0.83; bootstrapping SE = 0.42; 95% CI = - 1.69, - 0.02). Full mediations were found in psychosocial QoL; partial mediations were found in psychological distress and physical QoL. CONCLUSIONS: Weight-related self-stigma and insomnia were significant mediators in the effects of excess weight on health outcomes. Therefore, it is important to identify and treat weight-related self-stigma and insomnia for adolescents with OW/OB. LEVEL OF EVIDENCE: Level V, cross-sectional descriptive study.

Patterns of support to adolescents related to disability, family situation, harassment, and economy.

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.

An Analytic Review of Clinical Implications From Nursing and Psychosocial Research Within Swedish Pediatric Oncology.

The purpose of this manuscript is to analyze researchers' suggestions for clinical implications of their findings as stated in recent published articles on nursing and psychosocial research within the setting of Swedish pediatric oncology. Identified categories included staff awareness of the effects of child illness on families; systems for care improvement; provision of quality of care, education and support; and empowerment of children and families. In order to be able to realize these clinical suggestions, expanded research is needed as well as continued education and support for staff.

Construct validity of the simplified Chinese version of the instrument 'Picture My Participation'.

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.

Children with autism spectrum disorder in high technology medicine environments; a qualitative systematic review of parental perspectives.

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 .

The Short Warwick-Edinburgh Mental Well-being Scale (SWEMWBS) - A psychometric evaluation of adolescents in Sweden during the COVID-19 pandemic.

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.

Comparing children's self-report instruments for health-related quality of life using the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY).

UNLABELLED: Children with chronic conditions often experience a long treatment which can be complex and negatively impacts the child's well-being. In planning treatment and interventions for children with chronic conditions, it is important to measure health-related quality of life (HrQoL). HrQoL instruments are considered to be a patient-reported outcome measure (PROM) and should be used in routine practice. PURPOSE: The aim of this study was to compare the content dimensions of HrQoL instruments for children's self-reports using the framework of ICF-CY. METHOD: The sample consist of six instruments for health-related quality of life for children 5 to 18 years of age, which was used in the Swedish national quality registries for children and adolescents with chronic conditions. The following instruments were included: CHQ-CF, DCGM-37, EQ-5D-Y, KIDSCREEN-52, Kid-KINDL and PedsQL 4.0. The framework of the ICF-CY was used as the basis for the comparison. RESULTS: There were 290 meaningful concepts identified and linked to 88 categories in the classification ICF-CY with 29 categories of the component body functions, 48 categories of the component activities and participation and 11 categories of the component environmental factors. No concept were linked to the component body structures. The comparison revealed that the items in the HrQoL instruments corresponded primarily with the domains of activities and less with environmental factors. CONCLUSIONS: In conclusion, the results confirm that ICF-CY provide a good framework for content comparisons that evaluate similarities and differences to ICF-CY categories. The results of this study revealed the need for greater consensus of content across different HrQoL instruments. To obtain a detailed description of children's HrQoL, DCGM-37 and KIDSCREEN-52 may be appropriate instruments to use that can increase the understanding of young patients' needs.

Participation of children with long-term health conditions compared to that of healthy peers: A cross-sectional comparative study.

BACKGROUND: Knowledge is limited on attendance and involvement of perceived participation of children with long-term health conditions. AIMS: To evaluate the perceived participation of children with long-term health conditions and to compare their participation with that of healthy peers. MATERIAL AND METHODS: A cross-sectional comparative study was designed using self-reported data from 65 children with long-term health conditions and from 65 healthy peers, utilising the simplified Chinese version of Picture My Participation (PMP-C; Simplified). RESULTS: The frequency scores of children with long-term health conditions were significantly lower than those of healthy peers in terms of attendance for the total domain and for 13 activity items. The involvement scores of children with long-term health conditions were significantly lower than those of healthy children in 3 items. There was a strong correlation between rank orders of the most important activities for the two groups (r = 0.83). CONCLUSIONS: Children with long-term health conditions participated less in activities compared to healthy children. Further studies are required to investigate factors of the participation of children. SIGNIFICANCE: The PMP-C (Simplified) offered an opportunity for children to express their own perspectives of participation based on their individual experience of the activity.

Agreement between children with long-term health conditions and their primary caregivers on reports of perceived participation.

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.

Content validity of the instrument 'Picture My Participation' for measuring participation of children with and without autism spectrum disorder in mainland China.

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. METHODS: A 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.

Discussing racism in healthcare: A qualitative study of reflections by graduate nursing students.

AIM: The aim is to illustrate and analyse reflections from graduate nursing students over their experience of discussing racism in healthcare in an educational intervention. DESIGN: A qualitative, descriptive design was adopted. METHODS: Data were collected through written reflections and analysed through content analysis. In total, 81 students participated in the intervention; 39 paediatric and 42 public health care nursing students. Of those, 27 participants gave consent to have their written reflections included in the study. RESULTS: Three main categories were developed in the content analysis of student reflections: (a) the implicit embeddedness of racism in healthcare organization; (b) the effect of racism on interactions with patients; and (c) a growing awareness of one's own understanding of racism. This study indicates that student nurses discussed racism as relevant to understanding good clinical practice for the benefit of patients and work-based wellbeing of staff. This recognition of the organizational nature of racism warrants nursing leaders and managers to include racism as a social determinant of health in the undergraduate and graduate curricula to educate the next generation of nursing about racism.

Test-retest reliability of Picture My Participation in children with intellectual disability in South Africa.

BACKGROUND: Picture My Participation (PmP) is a promising instrument for measuring the participation in everyday situations of children with intellectual disability (ID), particularly in low- and middle-income countries. AIM: To explore test-retest reliability of PmP by comparing two repeated measurements of children with ID in an urban context in South Africa. METHODS: A picture-supported interview with 31 children with ID, aged 7-17 years, was conducted twice, two weeks apart. The children rated their participation, operationalised as attendance and involvement, in 20 everyday activities. Analyses were completed for total scores, for the four subcomponents and at item level. RESULTS: Test-retest agreement at an item level for both attendance and involvement showed slight/fair agreement for most activities (Kappa = 0.01-0.40), and moderate agreement for some activities (Kappa = 0.41-0.60). Moderate agreement was shown for the total scale and at component level (ICC = 0.5-0.75), except for (firstly) attendance of and involvement in 'Family Activities' (ICC = 0.26 for attendance, 0.33 for involvement), and (secondly) involvement in 'Personal Activities' (ICC = 0.33). CONCLUSION: The result indicates that PmP can reliably be used at component level and as a screening tool for intervention planning to identify participation and participation restrictions in children with ID.

Living an ordinary life - yet not: the everyday life of children and adolescents living with a parent with deafblindness.

INTRODUCTION: The family life of people living with one family member with deafblindness has been sparsely described. PURPOSE: The aim of the study was to explore how children experience their everyday family life when having a parent with deafblindness. METHODS: An explorative study in which data have been collected by qualitative interviews of children. Qualitative content analysis has been used for analysing the data. RESULTS: Overall theme; Living an ordinary life-yet not, is based on four categories with subcategories. A family like any other describes: Having the same family life as their friends, Acting like other children and It is what it is. Different everyday life describes: Acknowledging differences, Adjusting to the parent's needs and Financial strain. Being there for the parent describes: Helping the parent and Protecting the parent from harm. Being emotionally affected describes: Feelings of frustration, Feelings of compassion and Need for support. CONCLUSION: Children as relatives of parents with deafblindness have been given a voice. The children live an ordinary life, but at the same time a different ordinary life. Professionals need to take the child and their needs into account when support is given.

Short-term longitudinal participation trajectories related to domestic life and peer relations for adolescents with and without self-reported neurodevelopmental impairments.

BACKGROUND: With maturity and development, complexity in demands and roles change. As participation is often restricted in children with disabilities, this process might be delayed in adolescents. Investigating profiles of participation for adolescents with and without neurodevelopmental impairments could provide an understanding of which factors relate to high level of participation. The aim is to investigate trajectories of participation in everyday activities across clusters based on self-rated participation patterns in frequency of participation and perceived importance of activities related to domestic life and peer-related activities for adolescents with and without self-reported neurodevelopmental impairments. METHODS AND PROCEDURES: A prospective person-based cohort study design. OUTCOMES AND RESULTS: Five typical trajectories were identified. Trajectories between clusters with high perceived involvement in peer relations were associated with sibling support and family communication. Self-reported neurodevelopmental impairments did not predict participation profiles at certain time points, nor movements between clusters when measuring self-reported attendance and importance in domestic life and in peer-related activities. CONCLUSION AND IMPLICATIONS: Perceived sibling support and family communication are important for predicting typical trajectories across clusters in frequency of attendance and the perceived importance of domestic life and peer relations. Type of impairment was less important in predicting typical trajectories.

Voices of children with intellectual disabilities on participation in daily activities.

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.

Transcultural adaptation, content validity and reliability of the instrument 'Picture My Participation' for children and youth with and without intellectual disabilities in mainland China.

BACKGROUND: 'Picture My Participation' (PMP) is a validated questionnaire for assessing participation in everyday activities by children with disabilities in low and middle income countries, but it is not yet available in simplified Chinese. AIM: To describe the cross-cultural adaptation of the simplified Chinese version of 'Picture My Participation' (PMP-C; Simplified) and explore its validity and reliability. METHODS: A cross-sectional study using convenience sampling was conducted using PMP-C (Simplified) with structured interviews supported by pictures for children and youth with and without intellectual disabilities (ID) in mainland China. The validity of the PMP-C (Simplified) was demonstrated by face validity and content validity while the reliability was evaluated for internal consistency and test-retest reliability. RESULTS: Five items were slightly modified and eight pictures were revised to improve their fit with the culture of mainland China. All the items in PMP-C (Simplified) had excellent content validity, and face validity. The internal consistency, reliability coefficient and test-retest reliability of the subscale attendance for children and youth with and without ID were excellent. CONCLUSION: Preliminary evidence of the content validity of PMP-C (Simplified) items and reliability of the subscale attendance for use with children and youth in mainland China has been gathered. However, psychometric properties in terms of construct validity for the whole instrument and reliability for the engagement subscale need further exploration.

Barriers and facilitators to participation for children and adolescents with disabilities in low- and middle-income countries - A scoping review.

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 low- and 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 low- and middle- income countries. Barriers and facilitators in proximity to the child and family are most frequently described in the literature.