How can we reach long-lasting inclusive participation for all? A vision for the future.

In 2022, an international conference was held focusing on 'participation'. We shared current evidence, identified knowledge gaps and worked together to understand what new knowledge and community and practice changes were needed. This brief communication is a summary of the conference delegates' discussions. We present the key assumptions we make about participation and propose what is needed to create change for societies, communities, families and individuals. While we have some robust evidence to support participation approaches, more is needed, and it is everyone's responsibility to build an inclusive society where participation for all is the reality.

Strategies Used by Professionals in Pediatric Rehabilitation to Engage the Child in the Intervention Process: A Scoping Review.

AIM: To investigate strategies used by professionals in pediatric rehabilitation to engage children in every step of the intervention process, including assessment, goal setting, planning and implementation of the intervention, and results evaluation. METHODS: A scoping literature review was conducted, and seven databases were searched, including CINAHL and MEDLINE, ProQuest Central, PsycINFO, Social Science Premium Collection, PubMed, and Web of Science. A citation search of included articles was completed. Predetermined criteria, quality standards, and PIO framework guided the selection process. Results were presented in relation to Self-Determination Theory (SDT) and the contextual model of therapeutic change. RESULTS: In total, 20 studies were included in the review. Pediatric professionals reported that therapeutic use of self and their own engagement in the intervention facilitated the establishment of a supportive relationship. Providing clear explanations about their role and therapy rationale developed positive expectations. By making the child feel successful within-session and outside-session activities, professionals enhanced child mastery. Professionals' strategies were abstractly described. CONCLUSIONS: Further research is needed to investigate strategies that are effective in the different steps of the intervention. More observational, longitudinal studies are required to capture fluctuations in in-session engagement.

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.

Structural validity and internal consistency of the Strengths and Stressors in Parenting (SSF) Questionnaire in parents of children with developmental disabilities.

The current study investigated the structural validity and internal consistency of the Strengths and Stressors (SSF) questionnaire. The SSF is used in Swedish habilitation services to measure the positive and negative consequences that the fostering of a child with a developmental disability can have on family functioning in six domains: parent's feelings and attitudes, social life, family finances, relationship to the other parent, siblings, and professional support. The proposed six-factor model was tested with confirmatory factor analysis with data collected from 291 parents of children with developmental disabilities. The six-factor model had an acceptable fit according to most fit indices, but two items were non-significant. Overall, the internal consistency was acceptable or good. The SSF, with the proposed six-factor solution, can be a useful tool when assessing parental perspectives on the impacts of having a child with a developmental disability in clinical settings and research.

Feasibility of an eye-gaze technology intervention for students with severe motor and communication difficulties in Taiwan.

Eye-gaze technology provides access to a computer through the control of eye movements, thus allowing students with severe motor and communication difficulties to communicate and participate in curriculum activities and leisure; however, few studies have investigated whether any challenges exist to its implementation. This study examines the feasibility for teachers, parents, and therapists of applying an eye-gaze technology intervention for students with severe motor and communication difficulties in everyday settings. A mixed-method design was applied, focusing on the acceptability, demands, implementation, and practicality of the technology applications. Data was collected from 16 participants who assisted five students using eye-gaze technology in a previous 6-month intervention. The intervention comprised (a) use of eye-gaze devices with individualized content; and (b) services including training in use, team meetings, and bi-monthly support on implementation problems. The results showed that the participants perceived the technology as appropriate to enhance interaction and understanding of the students' learning and communication messages. Portable and easy-to-adjust systems were crucial to apply eye-gaze technology in different contexts. Improving eye-gaze services was required to afford in-service education, follow-up services, and loaning programs for sustainable implementation. The facilitators and barriers could guide researchers and practitioners to enhance the implementation of eye-gaze technology.

The application of the family of participation-related constructs (fPRC) framework to AAC intervention outcomes in children with complex communication needs: a scoping review.

Participation is a fundamental human right, and being able to communicate is an essential component of participation in various life situations, such as at school, with peers, and in the community. Augmentative and alternative communication (AAC) interventions aim to facilitate communication and social interaction, independence, and participation in all aspects of life. The purpose of this study was to summarize and map the AAC intervention outcomes for children with complex communication needs onto the Family of Participation-Related Constructs (fPRC) framework. The scoping review identified 270 studies for inclusion, and the data gathered was extracted and mapped onto the fPRC framework. The results indicate that although many studies have reported on participation-related constructs such as activity competence and context, there is still insufficient focus on attendance and involvement, sense of self, and environment constructs. Hence, future research in the field of AAC is needed on the various constructs of participation proposed by the fPRC framework.

Adjusting and doing the same: school nurses' descriptions of promoting participation in health visits with children of foreign origin.

BACKGROUND: School nurses in the school health services are assigned to promote health and participation among children when conducting health visits. Still, for children of foreign origin this promotion of participation might be hampered by challenges related to cultural diversity and language barriers. Therefore, knowledge needs to be developed regarding how these children's participation can be promoted, to support them in sharing and describing matters important for their health. The aim was to investigate school nurses' descriptions of promoting participation for children of foreign origin in health visits. METHODS: A content analysis of 673 Swedish school nurses' answers to eight open-ended questions regarding promotion of participation for children of foreign origin was conducted. The open-ended questions were part of a larger web-based cross-sectional survey distributed to school nurses in Sweden. RESULTS: The results show that school nurses use three main approaches during the health visit: adjusting according to the child's proficiency in Swedish and/or cultural or national background, adjusting according to the child's individual needs, and doing the same for all children regardless of their origin. Yet, adjustments according to the child's proficiency in Swedish and/or cultural or national background were the most common. CONCLUSIONS: By combining the approaches of adjusting, a child-centered care that contributes to children's participation in health visits and equity in health could be provided.

Parental Perspectives on Family Mealtimes Related to Gastrostomy Tube Feeding in Children.

Built on the important functions daily routines serve families and child health, this study aimed to explore parents' descriptions of mealtimes and food-related challenges when living with a child using a gastrostomy feeding tube. The study was informed by ecocultural theory and based on in-depth interviews combined with stimulated recall. The interviews of 10 parents were inductively analyzed by means of qualitative content analysis. Four main categories comprised the parents' descriptions: "One situation, different functions," "On the child's terms," "Doing something to me," and "An unpredictable pattern," with one overarching theme. The analyses showed that the parents strived to establish mealtimes in line with their cultural context, although they struggled to reach a point of satisfaction. The study highlights the importance of health care professionals to address the medical aspects of caring for a child with a G-tube, but also the potential psychological and social consequences for ordinary family life.

Longitudinal pathways of engagement, social interaction skills, hyperactivity and conduct problems in preschool children.

Preschool children's engagement/social interaction skills can be seen as aspects of positive functioning, and also act as protective aspects of functioning. On the other hand, hyperactivity/conduct problems are risk aspects that negatively affect children's everyday functioning. Few studies have investigated such orchestrated effects on mental health in young children over time. The aims of the study are first, to identify homogeneous groups of children having similar pathways in mental health between three time points. Second, to examine how children move between time points in relation to risk and protective factors. Alongitudinal study over 3 years, including 197 Swedish preschool children was used. Questionnaire data collected from preschool teachers. Statistical analysis using person-oriented methods with repeated cluster analyses. Children high in engagement/social skills and low in conduct problems continue to function well. Children with low engagement/social skills exhibiting both hyperactivity and conduct problems continue to have problems. Children with mixed patterns of protective factors and risk factors showed mixed outcomes. The stability of children's pathways was quite high if they exhibited many positive protective factors but also if they exhibited many risk factors. Children exhibiting a mixed pattern of protective and risk factors moved between clusters in a less predictable way. That stability in mental health was related to the simultaneous occurrence of either many protective factors or many risk factors supports the notion of orchestrated effects. The results indicate that early interventions need to have a dual focus, including both interventions aimed at enhancing child engagement and interventions focused on decreasing behavior problems.

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.

The development of the clinical assessment tool "Health and Everyday Functioning in Young Children with Cancer".

BACKGROUND: Young children's experiences of everyday life with cancer are vital in guiding care. The universal and interdisciplinary language of the International Classification of Functioning (ICF) and the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) has wide reaching effects for the care of young children in need. The aim of this study was to select and validate the content of a clinical assessment tool (CAT) for health and everyday functioning in young children with cancer. METHODS: A comprehensive set of ICF-CY codes (n = 70) mapping everyday function and health was previously identified from the transcripts of 12 interviews with young children with cancer and their parents at a paediatric oncology centre in the west of Sweden. Three transcripts were from data collected shortly after diagnosis, three transcripts from 6 months after diagnosis, three transcripts from 12 months after diagnosis, and three transcripts from 18 months after diagnosis. The present study involved the development of items based on the ICF-CY codes. RESULTS: The CAT consists of 52 items grouped in four dimensions: "the child herself/himself," "the child's everyday life," "the child's need for support," and "the child's contacts with health care." CONCLUSION: The questions correlate well with known research results and highlight areas that are important for health and everyday life for young children with cancer. This tool, based on children's experiences, can be used by both parents and health care personnel such as nurses to highlight aspects of health and function in everyday life for the young child with cancer that otherwise might be missed. This novel approach using the ICF-CY could be used to guide the delivery of care towards living an everyday life with a long-term illness.

School nurses' self-assessed cultural competence when encountering children of foreign origin: A cross-sectional study.

The purpose of this study was to investigate associations between school nurses' self-assessed cultural competence in health visits with children of foreign origin and demographic variables, by using a cross-sectional design. A Web-based questionnaire assessing cultural competence and demographic variables was distributed to a nationally representative sample (n = 816) of school nurses in Sweden. Data were analyzed using regression analysis. School nurses assessed themselves as culturally aware and moderately culturally competent, but not as culturally knowledgeable, culturally skilled, or comfortable in cultural encounters. Cultural competence was related to education in cultural diversity, how often nurses encounter children of foreign origin, and nurses' country of origin. In total, these variables explained 23.6% of the variation in school nurses' cultural competence. Because school nurses regard themselves as moderately culturally competent, a foundation for promoting children's health on equal terms in school health care exists. However, education in cultural diversity combined with other additional strategies is needed to further strengthen school nurses' cultural knowledge, skills, and comfort level in encounters with children of foreign origin.

Achievement and participation in schools for young adolescents with self-reported neuropsychiatric disabilities: A cross-sectional study from the southern part of Sweden.

BACKGROUND: Schools are expected to be an environment where children can reach their fullest potential and develop their talents, personality, as well as their mental and physical abilities. Children with disabilities often have restricted participation and lower achievement in school. The aim is to investigate if there are any differences in participation and achievement in school between adolescents, with and without self-reported neuropsychiatric disabilities, and to explore the relations between achievement and participation. METHODS: A cross-sectional study was carried out based on data collected from 1520 adolescents in the sixth and seventh grade, from the south of Sweden. Multiple logistic regression was conducted to explore the relationship between having a neuropsychiatric disability, with participation and achievement, and how different factors affected this relationship. RESULTS: Having a self-reported neuropsychiatric disability increases the likelihood of having restricted participation (adjusted odds ratio (AOR): 2.89; 95% confidence interval (CI): 1.99-4.23) and lower achievement in school (AOR: 2.94; 95% CI: 2.06-4.24). These adolescents were also more likely to have negative relationships to their teachers, be bullied, have poorer connectedness to their parents, come from families with less money, be trying drugs and be male, in comparison to the adolescents without a neuropsychiatric disability. The odds of having lower achievement increased with lower engagement and absenteeism from class. CONCLUSIONS: Adolescents with self-reported neuropsychiatric disabilities have a disadvantaged situation in school, and are exposed to factors that could have long-term negative effects. More longitudinal research is required to conclude what factors are causing restricted participation and low achievement.

Intervention in time-processing ability, daily time management and autonomy in children with intellectual disabilities aged 10-17 years - A cluster randomised trial.

BACKGROUND/AIM: Difficulties with management of time are frequently observed in children and youth with intellectual disabilities (IDs). The aim of this study was to evaluate a new intervention programme 'My Time' to improve time-processing ability (TPA) in children with IDs aged 10-17 years (n = 61). METHODS: Cluster randomised and waiting-list control group design was used. Data collection included the Kit for assessment of TPA, the Time-Parent scale and a self-rating of autonomy to assess occupational performance in daily life. The method was implemented over an 8-week period. Effect size (ES) was calculated and an analysis of covariance on the individual level and a two-stage process on the cluster level. RESULTS: The estimated mean improvement in the KaTid-Child score from baseline (t1) to t2 was significantly higher in the intervention group compared to the waiting-list group, ES Cohen's d = 0.64. CONCLUSION: The results present first evidence of the effectiveness of a new occupational therapy intervention programme ('My Time') to facilitate TPA in children with mild to moderate IDs. Children with IDs aged 10-17 years could improve their TPA at a measurable pace when given intervention. The method could complement interventions using time-assistive devices. Children with IDs should be identified to guide intervention. Further research is necessary to establish whether using the intervention programme can facilitate the development of TPA in younger children.

Measures used to quantify participation in childhood disability and their alignment with the family of participation-related constructs: a systematic review.

AIM: We aimed to identify measures used to assess the participation of disabled children and to map the measures' content to the family of participation-related constructs (fPRC) to inform future research and practice. METHOD: Six databases were searched to identify measures used to assess participation in health, psychology, and education research. Included studies involved children aged 0 to 18 years with a permanent impairment or developmental disability and reported use of a quantitative measure of participation. A second search sought relevant literature about each identified measure (including published manuals) to allow a comprehensive understanding of the measure. Measurement constructs of frequently reported measures were then mapped to the fPRC. RESULTS: From an initial yield of 32 767 articles, 578 reported one or more of 118 participation measures. Of these, 51 measures were reported in more than one article (our criterion) and were therefore eligible for mapping to the fPRC. Twenty-one measures quantified aspects of participation attendance, 10 quantified aspects of involvement as discrete scales, and four quantified attendance and involvement in a manner that could not be separated. INTERPRETATION: Improved understanding of participation and its related constructs is developing rapidly; thoughtful selection of measures in research is critical to further our knowledge base. WHAT THIS PAPER ADDS: The fPRC can support our rapidly evolving and expanding understanding of participation. Instruments selected to measure participation do not always align with emerging concepts. Matching research aims to a chosen measure's content will improve understanding of participation. Opportunities exist to develop validated participation measures, especially self-reported measures of involvement.

Standardised assessment of functioning in ADHD: consensus on the ICF Core Sets for ADHD.

Attention-deficit/hyperactivity disorder (ADHD) is associated with significant impairments in social, educational, and occupational functioning, as well as specific strengths. Currently, there is no internationally accepted standard to assess the functioning of individuals with ADHD. WHO's International Classification of Functioning, Disability and Health-child and youth version (ICF) can serve as a conceptual basis for such a standard. The objective of this study is to develop a comprehensive, a common brief, and three age-appropriate brief ICF Core Sets for ADHD. Using a standardised methodology, four international preparatory studies generated 132 second-level ICF candidate categories that served as the basis for developing ADHD Core Sets. Using these categories and following an iterative consensus process, 20 ADHD experts from nine professional disciplines and representing all six WHO regions selected the most relevant categories to constitute the ADHD Core Sets. The consensus process resulted in 72 second-level ICF categories forming the comprehensive ICF Core Set-these represented 8 body functions, 35 activities and participation, and 29 environmental categories. A Common Brief Core Set that included 38 categories was also defined. Age-specific brief Core Sets included a 47 category preschool version for 0-5 years old, a 55 category school-age version for 6-16 years old, and a 52 category version for older adolescents and adults 17 years old and above. The ICF Core Sets for ADHD mark a milestone toward an internationally standardised functional assessment of ADHD across the lifespan, and across educational, administrative, clinical, and research settings.

An international clinical study of ability and disability in ADHD using the WHO-ICF framework.

This is the fourth and final study designed to develop International Classification of Functioning, Disability and Health (ICF, and children and youth version, ICF-CY) core sets for attention-deficit hyperactivity disorder (ADHD). To investigate aspects of functioning and environment of individuals with ADHD as documented by the ICF-CY in clinical practice settings. An international cross-sectional multi-centre study was applied, involving nine units from eight countries: Denmark, Germany, India, Italy, Portugal, Saudi Arabia, Sweden and Taiwan. Clinicians and clinical researchers rated the functioning level of 112 children, adolescents and adults with ADHD using the extended ICF-CY checklist version 2.1a. The ratings were based on a variety of information sources, such as medical records, medical history, clinical observations, clinical questionnaires, psychometric tests and structured interviews with participants and family members. In total, 113 ICF-CY categories were identified, of which 50 were related to the activities and participation, 33 to environmental factors and 30 to body functions. The clinical study also yielded strengths related to ADHD, which included temperament and personality functions and recreation and leisure. The study findings endorse the complex nature of ADHD, as evidenced by the many functional and contextual domains impacted in ADHD. ICF-CY based tools can serve as foundation for capturing various functional profiles and environmental facilitators and barriers. The international nature of the ICF-CY makes it possible to develop user-friendly tools that can be applied globally and in multiple settings, ranging from clinical services and policy-making to education and research.

Which factors most influence referral for restorative dental treatment under sedation and general anaesthesia in children with complex disabilities: caries severity, child functioning, or dental service organisation?

BACKGROUND: The UN Convention on the Rights of the Child gives all children right to the highest standard of services for treatment and rehabilitation. For children with disabilities, sedation and general anaesthesia (GA) are often indicated for dental treatment; however, accessibility to this varies. The International Classification of Functioning, Disability and Health - Child and Youth version (ICF-CY) enables a biopsychosocial description of children undergoing dental treatment. AIM: To investigate conscious sedation and GA in children with complex disabilities and manifest caries and analyse how caries, child functioning, and dental service organisation relate to dental GA (DGA), comparing Argentina, France, and Sweden using the ICF-CY. DESIGN: Quantitative, cross-sectional; data collected through structured interviews, observation, and dental records. RESULTS: Sedation and DGA were common. Children with limitations in interpersonal interactions and relationships were more likely to have had DGA (OR: 5.3, P = 0.015). Level of caries experience was strongly correlated with experience of DGA. There were significant differences between countries regarding caries prevalence, sedation, DGA, and functional and environmental factors. CONCLUSIONS: Although caries experience and child functioning are important, dental health service organisation had the most impact on the incidence of DGA, and for the use of conscious sedation, for children with complex disabilities.

The Relationship Between Intelligence Quotient and Aspects of Everyday Functioning and Participation for People Who Have Mild and Borderline Intellectual Disabilities.

BACKGROUND: This study explored the relationship between intelligence quotient (IQ) and aspects of everyday functioning/participation in individuals (age 16-40) who have a mild/borderline intellectual disability (IQ 55-85). METHOD: Correlations were examined between IQ and (i) self-rated (n = 72) ability, participation as performance (how often an activity is performed), important participation restriction (not/seldom performing an activity perceived as important) and general well-being and (ii) proxy-rated (n = 41) ability and participation as performance. RESULTS: No significant correlations between IQ and any of the explored measures were found. However, the effect sizes of the correlations between IQ and ability were considered as small but not negligible. CONCLUSIONS: The results support the notion that IQ is a poor predictor of general aspects of everyday functioning in persons with mild/borderline intellectual disability. The result indicates that self-ratings partly generate other information than proxy ratings which may be important for assessments of supportive requirements and diagnosis.

Participation, both a means and an end: a conceptual analysis of processes and outcomes in childhood disability.

This review outlines a conceptual approach to inform research and practice aimed at supporting children whose lives are complicated by impairment and/or chronic medical conditions, and their families. 'Participation' in meaningful life activities should be an essential intervention goal, to meet the challenges of healthy growth and development, and to provide opportunities to help ensure that young people with impairments reach their full potential across their lifespan. Intervention activities and research can focus on participation as either an independent or dependent variable. The proposed framework and associated hypotheses are applicable to children and young people with a wide variety of conditions, and to their families. In taking a fresh 'non-categorical' perspective to health for children and young people, asking new questions, and exploring issues in innovative ways, we expect to learn lessons and to develop creative solutions that will ultimately benefit children with a wide variety of impairments and challenges, and their families, everywhere.