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Participation and Well Being Among Children and Youth With Childhood Onset Disabilities

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A special issue of International Journal of Environmental Research and Public Health (ISSN 1660-4601). This special issue belongs to the section "Children's Health".

Deadline for manuscript submissions: closed (31 December 2020) | Viewed by 54810

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Special Issue Editors

Dr. Dana Anaby

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Guest Editor

School of Physical and Occupational Therapy, McGill University, Montreal, QC, Canada
Interests: participation and well-being; childhood disability; intervention plans to enhance community engagement; environmental impacts on participation; knowledge translation

Prof. Dr. Mats Granlund

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Guest Editor

CHILD Research Group, School of Health and Welfare, Jönköping University, 551 11 Jönköping, Sweden
Interests: participation in everyday life for children and youth with disabilities; assessment methods and interventions; positive functionning of children with disabilites; interaction between children with disabilities and their environment; self-esteem; consequences of activity involvement

Special Issue Information

Dear Colleagues,

Participation, defined as involvement in life situations, is considered beneficial to children’s development, health, and well-being. Prior research has shown that the participation of children and youth with various types of disabilities is often restricted around the globe. Factors affecting the participation patterns of those with childhood-onset disabilities are also well-documented and include personal, familial, and environmental factors.

This Special Issue hopes to advance this current body of knowledge through high-quality multi-disciplinary research that enhances our understanding of:

1) The impact of participation on subjective well-being;

2) Effective interventions to improve children’s participation and emotional well-being;

3) Knowledge translation (KT) strategies and implementation processes aimed at bringing changes in clinical practice towards a greater focus on participation for this population.

We welcome research on participation in different settings (e.g., home, school, and/or community) that focuses on but is not limited to the following lines of inquiry:

Well-designed intervention studies aimed at improving participation and, thereby, subjective well-being, as well as longitudinal studies demonstrating participation trajectories. Pilot studies, impairment-based interventions, and exercise programs are not within the scope of this Special Issue.
Studies examining the relationships between participation and well-being, especially those that focus on mental or psychosocial elements of well-being (e.g., mood/emotional status, self-esteem, friendships, life satisfaction) rather than solely aspects of physical well-being (e.g., fitness, energy, pain, physical functioning).
KT initiatives facilitating the uptake of new evidence regarding participation and/or well-being in clinical day-to-day practice. Examples include KT implementation strategies or methods to evaluate participation-based practices, and studies illustrating existing knowledge-to-practice gaps.

Dr. Dana Anaby
Prof. Mats Granlund
Guest Editors

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. International Journal of Environmental Research and Public Health is an international peer-reviewed open access monthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2500 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

children
adolescents
subjective well-being
participation
community engagement
childhood disability

Published Papers (14 papers)

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Research

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18 pages, 1213 KiB

Open AccessArticle

Participation Restrictions among Children and Young Adults with Acquired Brain Injury in a Pediatric Outpatient Rehabilitation Cohort: The Patients’ and Parents’ Perspective

by Florian Allonsius, Arend de Kloet, Gary Bedell, Frederike van Markus-Doornbosch, Stefanie Rosema, Jorit Meesters, Thea Vliet Vlieland and Menno van der Holst

Int. J. Environ. Res. Public Health 2021, 18(4), 1625; https://doi.org/10.3390/ijerph18041625 - 8 Feb 2021

Cited by 9 | Viewed by 3280

Abstract

Improving participation is an important aim in outpatient rehabilitation treatment. Knowledge regarding participation restrictions in children and young adults with acquired brain injury (ABI) is scarce and little is known regarding the differences in perspectives between patients and parents in the outpatient rehabilitation setting. The aims are to describe participation restrictions among children/young adults (5–24 years) with ABI and investigating differences between patients’ and parents’ perspectives. At admission in 10 rehabilitation centers, patients and parents were asked to complete the Child and Adolescent Scale of Participation (CASP; score 0–100; lower score = more restrictions) and injury/patient/family-related questions. CASP scores were categorized (full/somewhat-limited/limited/very-limited participation). Patient/parent-reported outcomes were compared using the Wilcoxon signed-rank test. 223 patients and 245 parents participated (209 paired-samples). Median patients’ age was 14 years (IQR; 11–16), 135 were female (52%), 195 had traumatic brain injury (75%). The median CASP score reported by patients was 82.5 (IQR: 67.5–90) and by parents 91.3 (IQR: 80.0–97.5) (difference = p < 0.05). The score of 58 patients (26%) and 25 parents (10%) was classified as ‘very-limited’. Twenty-six percent of children and young adults referred for rehabilitation after ABI had “very-limited” participation. Overall, parents rated their child’s participation better than patients themselves. Quantifying participation restrictions after ABI and considering both perspectives is important for outpatient rehabilitation treatment. Full article

(This article belongs to the Special Issue Participation and Well Being Among Children and Youth With Childhood Onset Disabilities)

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16 pages, 1177 KiB

Open AccessArticle

Cross-Cultural Adaptation and Evaluation of the Participation and Environment Measure for Children and Youth to the Indian Context—A Mixed-Methods Study

by Roopa Srinivasan, Vrushali Kulkarni, Sana Smriti, Rachel Teplicky and Dana Anaby

Int. J. Environ. Res. Public Health 2021, 18(4), 1514; https://doi.org/10.3390/ijerph18041514 - 5 Feb 2021

Cited by 6 | Viewed by 2937

Abstract

Culturally appropriate measures enable knowledge transfer and quality improvement of rehabilitation services in diverse contexts. The Applied Cultural Equivalence Framework (ACEF) was used in a two-phased mixed methods study to adapt and evaluate the Participation and Environment Measure-Children and Youth (PEM-CY) in India. Cognitive interviews with caregivers of children with disabilities (n = 15) aged 5–17 years established conceptual, item, semantic, and operational equivalence of the Indian PEM-CY. Construct validity was assessed by comparing PEM-CY scores of children with and without disabilities (n = 130) using a case-control design. Cognitive interviews resulted in operational (60.3%), semantic (26.4%), and item-level (13.2%) modifications in the PEM-CY with no changes at the conceptual level. Internal consistency (n = 130) was acceptable to excellent (0.61–0.87) on most scales. Test–retest reliability (n = 30) was good to excellent (ICC ≥ 0.75, Kappa 0.6–1.0) for most scales. Significant differences in all PEM-CY summary scores were found between children with and without disabilities, except for environmental supports. Children with disabilities had lower scores on frequency and involvement in activities across all settings; their caregivers desired greater change in participation and reported experiencing more environmental barriers across settings. Findings suggest the adapted PEM-CY is a valid and reliable measure for assessing the participation of Indian children. Full article

(This article belongs to the Special Issue Participation and Well Being Among Children and Youth With Childhood Onset Disabilities)

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16 pages, 1405 KiB

Open AccessArticle

Participation Profile of Children and Youth, Aged 6–14, with and without ADHD, and the Impact of Environmental Factors

by Tair Shabat, Haya Fogel-Grinvald, Dana Anaby and Anat Golos

Int. J. Environ. Res. Public Health 2021, 18(2), 537; https://doi.org/10.3390/ijerph18020537 - 11 Jan 2021

Cited by 10 | Viewed by 4335

Abstract

Background: Children and youth with attention deficit hyperactivity disorder (ADHD) may experience difficulties in participation, but few studies examine their participation and the environmental factors affecting participation. This study explored the participation and the environmental factors of children and youth, with and without attention deficit hyperactivity disorder (ADHD), in the following three settings: home, school, and community. Materials and Methods: Parents of 65 participants aged 6–14 (M = 9.91, SD = 1.87) with and without ADHD completed the Participation and Environment Measure for Children and Youth (PEM-CY) questionnaire, which evaluates participation and environmental factors, along with demographic and screening questionnaires. Results: The ADHD group (n = 31) scored significantly lower than the non-ADHD group (n = 34) in “frequency” at home, “involvement”, and overall environmental support in all settings, with parents expressing a greater desire to change their child’s home and community participation. For the ADHD group, a relationship was found between environmental support and involvement in all three settings. Conclusions: The findings demonstrated differences in the participation of children and youth with ADHD across different settings, compared to those without ADHD, and confirmed the effect of environmental factors on participation, especially involvement. It is essential to consider participation measures and environmental factors when designing interventions for children and youth with ADHD. Full article

(This article belongs to the Special Issue Participation and Well Being Among Children and Youth With Childhood Onset Disabilities)

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12 pages, 763 KiB

Open AccessArticle

Exploring the Impacts of Environmental Factors on Adolescents’ Daily Participation: A Structural Equation Modelling Approach

by Yael Fogel, Naomi Josman and Sara Rosenblum

Int. J. Environ. Res. Public Health 2021, 18(1), 142; https://doi.org/10.3390/ijerph18010142 - 28 Dec 2020

Cited by 3 | Viewed by 2479

Abstract

Adolescents with neurodevelopmental difficulties struggle to perform daily activities, reflecting the significant impact of executive functions on their participation. This research examines an integrated conceptual model wherein supportive environmental factors in the community, school and home settings explain the children’s participation (involvement and frequency) with their daily activities performance as a mediator. Parents of 81 10- to 14-year-old adolescents with and without executive function deficit profiles completed the Participation and Environment Measure for Children and Youth and the Child Evaluation Checklist. A secondary analysis was conducted to examine the structural equation model using AMOS software. The results demonstrated support for the hypothesised model. Supportive environmental demands in school predicted 32% of home participation, and the adolescents’ daily performance reflected that executive functions mediated the relationship between them. Together, these findings highlight the school environment as the primary contributor that affects the children’s functioning according to their parents’ reports and as a predictor of high participation at home in terms of frequency and involvement. This study has implications for multidisciplinary practitioners working with adolescents in general, and in the school setting specifically, to understand meaningful effects of executive functions on adolescents’ daily functioning and to provide accurate assistance and intervention. Full article

(This article belongs to the Special Issue Participation and Well Being Among Children and Youth With Childhood Onset Disabilities)

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18 pages, 1169 KiB

Open AccessArticle

Experiences of Using Pathways and Resources for Engagement and Participation (PREP) Intervention for Children with Acquired Brain Injury: A Knowledge Translation Study

by Melanie Burrough, Clare Beanlands and Paul Sugarhood

Int. J. Environ. Res. Public Health 2020, 17(23), 8736; https://doi.org/10.3390/ijerph17238736 - 24 Nov 2020

Cited by 4 | Viewed by 2696

Abstract

Background: Children with acquired brain injury experience participation restrictions. Pathways and Resources for Engagement and Participation (PREP) is an innovative, participation focused intervention. Studies have examined PREP in Canadian research contexts, however little is known about implementation in real-life clinical settings. This study aimed to understand experiences of clinicians implementing PREP in a UK clinical context, with a focus on implementation processes and key factors for successful implementation. Methods: A qualitative single-site 8-week knowledge translation intervention study, guided by an action research framework, explored clinicians’ experiences of implementation. Six occupational therapists (OTs) working in a neurorehabilitation setting participated. The therapists provided two intervention sessions per week, over four weeks for one child on their caseload. Planning, implementation and evaluation were explored through two focus groups. Thematic analysis was used to analyse data. Results: Two themes, “key ingredients before you start” and “PREP guides the journey”, were identified before introducing PREP to practice. Four additional themes were related to PREP implementation: “shifting to a participation perspective”, “participation moves beyond the OT”, “environmental challengers and remedies” and “whole family readiness”. A participation ripple effect was observed by building capacity across the multi-disciplinary team and families. The involvement of peers, social opportunities and acknowledging family readiness were key factors for successful implementation. Conclusions: The findings illustrate practical guidance to facilitate the uptake of participation-based evidence in clinical practice. Further research is required to understand aspects of knowledge translation when implementing participation interventions in other UK clinical settings. Full article

(This article belongs to the Special Issue Participation and Well Being Among Children and Youth With Childhood Onset Disabilities)

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16 pages, 1473 KiB

Open AccessFeature PaperArticle

Longitudinal Trends of Participation in Relation to Mental Health in Children with and without Physical Difficulties

by Ai-Wen Hwang, Chia-Hsieh Chang, Mats Granlund, Christine Imms, Chia-Ling Chen and Lin-Ju Kang

Int. J. Environ. Res. Public Health 2020, 17(22), 8551; https://doi.org/10.3390/ijerph17228551 - 18 Nov 2020

Cited by 5 | Viewed by 2177

Abstract

Children with physical disabilities (PD) are known to have participation restrictions when in inclusive settings alongside typically developing (TD) children. The restrictions in participation over time may affect their mental health status. This study aimed to investigate the longitudinal relationship between independence in activities (capability) and frequency of attendance in activities, in relation to perceived mental health status in children with and without PD. The participants were a convenience sample of parents of 77 school children with PD and 94 TD children who completed four assessments with a one-year interval between each assessment. Parents of these children were interviewed with the Functioning Scale of the Disability Evaluation System—Child version (FUNDES-Child). Three dimensions of mental health problems—loneliness, acting upset, and acting nervous—were rated by parents with the Child Health Questionnaire (CHQ). Linear trend was tested by repeated-measure ANOVA. The results revealed different longitudinal patterns of independence and frequency of attendance over time for children with PD and TD. Frequency of attending activities may be more important than independence in performing activities for experiencing fewer mental health problems. The findings highlight the need for supporting children’s actual attendance in daily activities which may benefit their later mental health. Full article

(This article belongs to the Special Issue Participation and Well Being Among Children and Youth With Childhood Onset Disabilities)

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26 pages, 414 KiB

Open AccessArticle

Occupational Performance Coaching with Parents to Promote Community Participation and Quality of Life of Young Children with Developmental Disabilities: A Feasibility Evaluation in Hong Kong

by Chi-Wen Chien, Yuen Yi Cynthia Lai, Chung-Ying Lin and Fiona Graham

Int. J. Environ. Res. Public Health 2020, 17(21), 7993; https://doi.org/10.3390/ijerph17217993 - 30 Oct 2020

Cited by 12 | Viewed by 3294

Abstract

Participation in community activities contributes to child development and health-related quality of life (HRQOL), but restricted participation has been reported in children with disabilities. Occupational performance coaching (OPC) is an intervention that targets participatory goals in child performance through coaching parents, with evidence of effectiveness for pediatric populations. Little is known about the feasibility of OPC in Hong Kong, or its effect on children’s community participation and HRQOL. A mixed-methods case study design was applied to explore Hong Kong parents’ experience of OPC in relation to goal achievement, community participation, and HRQOL change in children. Four parents of young children with developmental disabilities (aged five to six years) received OPC for three to eight sessions within one to three months. Quantitative pre- and post-intervention data were analyzed descriptively. Semi-structured interviews with parents were conducted at post-intervention, and analyzed using content analysis. Results showed a trend of improvement in goal performance, child involvement in community activities, and specific aspects of HRQOL among most participants. Parents perceived undertaking OPC positively, described gaining insights and skills, and felt supported. The findings suggest that OPC warrants further investigation for use in Hong Kong, to promote children’s community participation and quality of life. Full article

(This article belongs to the Special Issue Participation and Well Being Among Children and Youth With Childhood Onset Disabilities)

13 pages, 365 KiB

Open AccessArticle

The Participation of Children with Intellectual Disabilities: Including the Voices of Children and Their Caregivers in India and South Africa

by Shakila Dada, Kirsty Bastable, Liezl Schlebusch and Santoshi Halder

Int. J. Environ. Res. Public Health 2020, 17(18), 6706; https://doi.org/10.3390/ijerph17186706 - 15 Sep 2020

Cited by 5 | Viewed by 2730

Abstract

There is a shortage of research on the participation of children with intellectual disabilities from middle-income countries. Also, most child assessments measure either the child’s or the caregiver’s perceptions of participation. Participation, however, is an amalgamation of both perspectives, as caregivers play a significant role in both accessing and facilitating opportunities for children’s participation. This paper reports on both perceptions—those of children with intellectual disabilities and those of their caregiver, in India and South Africa. A quantitative group comparison was conducted using the Children’s Assessment of Participation and Enjoyment (CAPE) that was translated into Bengali and four South African languages. One hundred child–caregiver dyads from India and 123 pairs from South Africa participated in the study. The results revealed interesting similarities and differences in participation patterns, both between countries and between children and their caregivers. Differences between countries were mostly related to the intensity of participation, with whom, and where participation occurred. Caregiver and child reports differed significantly regarding participation and the enjoyment of activities. This study emphasises the need for consideration of cultural differences when examining participation and suggests that a combined caregiver-and-child-reported approach may provide the broadest perspective on children’s participation. Full article

(This article belongs to the Special Issue Participation and Well Being Among Children and Youth With Childhood Onset Disabilities)

12 pages, 314 KiB

Open AccessArticle

Children in South Africa with and without Intellectual Disabilities’ Rating of Their Frequency of Participation in Everyday Activities

by Alecia Samuels, Shakila Dada, Karin Van Niekerk, Patrik Arvidsson and Karina Huus

Int. J. Environ. Res. Public Health 2020, 17(18), 6702; https://doi.org/10.3390/ijerph17186702 - 15 Sep 2020

Cited by 12 | Viewed by 2968

Abstract

In a low-and middle-income country (LMIC) such as South Africa, not much is known about how children with intellectual disabilities (ID) participate in everyday activities, as no studies to date have compared their participation to peers without ID from the same background. Using a newly developed, contextually valid measure of participation, Picture my Participation (PmP), 106 children with (73) and without ID (33), rated their frequency of participation in activities of daily living. Previous international research has established that children with ID tend to participate less frequently than children without ID in everyday activities outside of the school setting. However, much of this research is based on proxy ratings from caregivers rather than children with ID themselves. There is a growing body of evidence that suggests children with disabilities have uniquely different views of their own participation than their caregivers. The existing research evidence is also delimited to studies conducted predominantly in high income contexts (HICSs). Since it is universally acknowledged that participation patterns are affected by the environment, it is important to evaluate the generalizability of the current evidence to LMICs. The current study found that there were many similar patterns of participation between the two groups although significant differences were noted in social, community, leisure and self-care activities. We compare these results to findings from studies conducted in HICs and find that there are similarities but also differences across contexts. This study highlights the importance of gaining a child’s perspective of participation and understanding how intellectual disability can affect participation relative to peers without ID in LMICS. Full article

(This article belongs to the Special Issue Participation and Well Being Among Children and Youth With Childhood Onset Disabilities)

18 pages, 338 KiB

Open AccessArticle

The Role of Social Support in Participation Perspectives of Caregivers of Children with Intellectual Disabilities in India and South Africa

by Shakila Dada, Kirsty Bastable and Santoshi Halder

Int. J. Environ. Res. Public Health 2020, 17(18), 6644; https://doi.org/10.3390/ijerph17186644 - 11 Sep 2020

Cited by 14 | Viewed by 3250

Abstract

Caregivers are an intrinsic component of the environment of children with intellectual disabilities. However, caregivers’ capacity to support children’s participation may be linked to the social support that they, as caregivers, receive. Social support may increase participation, educational, psychological, medical and financial opportunities. However, there is a lack of information on social support in middle-income countries. The current study described and compared the social support of caregivers of children with intellectual disabilities by using the Family Support Survey (FSS) in India and South Africa. The different types of social support were subsequently considered in relation to participation, using the Children’s Assessment of Participation and Enjoyment (CAPE). One hundred caregiver–child dyads from India and 123 from South Africa participated in this study. The data were analysed using non-parametric measures. Indian caregivers reported greater availability of more helpful support than did the South African caregivers. Social support was associated with children’s participation diversity (India) and intensity (South Africa). The child-/caregiver-reported participation data showed different associations with participation. Results from this study suggest that perceived social support of caregivers differs between countries and is associated with their child’s participation. These factors need to be considered when generalising results from different countries. Full article

(This article belongs to the Special Issue Participation and Well Being Among Children and Youth With Childhood Onset Disabilities)

16 pages, 985 KiB

Open AccessArticle

Structural Validity of an ICF-Based Measure of Activity and Participation for Children in Taiwan’s Disability Eligibility Determination System

by Ai-Wen Hwang, Chia-Feng Yen, Hua-Fang Liao, Wen-Chou Chi, Tsan-Hon Liou, Ben-Sheng Chang, Ting-Fang Wu, Lin-Ju Kang, Shu-Jen Lu, Rune J. Simeonsson, Tze-Hsuan Wang and Gary Bedell

Int. J. Environ. Res. Public Health 2020, 17(17), 6134; https://doi.org/10.3390/ijerph17176134 - 24 Aug 2020

Cited by 6 | Viewed by 2341

Abstract

To assess activity and participation for children in Taiwan’s Disability Eligibility Determination System (DEDS), we developed a questionnaire, the Functioning Disability Evaluation Scale (FUNDES-Child), based on the Child and Adolescent Scale of Participation (CASP). The study follows a methodology research design to investigate the construct validity of the frequency and independence dimensions of FUNDES-Child 7.0. Two samples were randomly stratified from the databank of 13,835 children and youth with disabilities aged 6.0–17.9 years to examine structural validity by exploratory factor analysis (EFA, n = 4111, mean age of 11.3 ± 3.5) and confirmatory factor analysis (CFA, n = 4823, mean age of 11.4 ± 3.5)). EFA indicated a 4-factor structure for the frequency dimension (51.3% variance explained) and a 2-factor structure for the independence dimension (53.6% variance explained). The CFA indicated that the second-order factor structures of both dimensions were more parsimonious with adequate fit indices (Goodness fit Index, GFI; Normed Fit Index, NFI; Comparative Fit Index, CFI; and Tucker-Lewis Index, TLI ≥ 0.95, Root Mean Square Error of Approximation, RMSEA < 0.06). Results provide evidence that the participation part of FUNDES-Child 7.0 has acceptable structural validity for use in Taiwan’s DEDS. Utility of FUNDES-Child 7.0 in rehabilitation, welfare, and educational services needs further study. Full article

(This article belongs to the Special Issue Participation and Well Being Among Children and Youth With Childhood Onset Disabilities)

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15 pages, 1336 KiB

Open AccessArticle

Exploring the Participation Patterns and Impact of Environment in Preschool Children with ASD

by Ghaidaa Khalifa, Peter Rosenbaum, Kathy Georgiades, Eric Duku and Briano Di Rezze

Int. J. Environ. Res. Public Health 2020, 17(16), 5677; https://doi.org/10.3390/ijerph17165677 - 6 Aug 2020

Cited by 11 | Viewed by 4333

Abstract

Participation in everyday activities at home and in the community is essential for children’s development and well-being. Limited information exists about participation patterns of preschool children with autism spectrum disorder (ASD). This study examines these participation patterns in both the home and community, and the extent to which environmental factors and social communication abilities are associated with participation. Fifty-four parents of preschool-aged children with ASD completed the Participation and Environment Measure for Young Children and the Autism Classification System of Functioning: Social Communication. The children had a mean age of 48.9 (8.4) months. Patterns of participation were studied using descriptive statistics, radar graphs, and Spearman correlations. Children with ASD participated in a variety of activities at home and in the community, but showed a higher participation frequency at home. Parents identified different barriers (e.g., social demands) and supports (e.g., attitudes) in both settings. There was a moderate positive association between children’s social communication abilities and their levels of involvement during participation and the diversity of activities. This study highlights the importance of social communication abilities in the participation of preschool children with ASD, and the need to support parents while they work to improve their child’s participation, especially within their communities. Full article

(This article belongs to the Special Issue Participation and Well Being Among Children and Youth With Childhood Onset Disabilities)

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18 pages, 4520 KiB

Open AccessArticle

Changes in Overall Participation Profile of Youth with Physical Disabilities Following the PREP Intervention

by Colin Hoehne, Brittany Baranski, Louiza Benmohammed, Liam Bienstock, Nathan Menezes, Noah Margolese and Dana Anaby

Int. J. Environ. Res. Public Health 2020, 17(11), 3990; https://doi.org/10.3390/ijerph17113990 - 4 Jun 2020

Cited by 10 | Viewed by 4290

Abstract

The Pathways and Resources for Engagement and Participation (PREP), an environmental-based intervention, is effective in improving the participation of youth with disabilities in specific targeted activities; however, its potential impact on overall participation beyond these activities is unknown. This study examined the differences in participation levels and environmental barriers and supports following the 12-week PREP intervention. Existing data on participation patterns and environmental barriers and supports, measured by the Participation and Environment Measure for Children and Youth, pre-and post-PREP intervention, were statistically analyzed across 20 youth aged 12 to 18 (mean = 14.4, standard deviation (SD) = 1.82) with physical disabilities in three settings: home, school and community. Effect sizes were calculated using Cohen’s d. Following PREP, youth participated significantly less often at home (d = 2.21; 95% Confidence Interval (CI) [1.79, 2.96]), more often (d = 0.57; 95% CI [−0.79, −0.14]) and in more diverse activities (d = 0.51; 95% CI [−1.99, −0.51]) in the community. At school, significantly greater participation was observed in special school roles (t = −2.46. p = 0.024). Involvement and desire for change remained relatively stable across all settings. A substantial increase in community environmental supports was observed (d = 0.67), with significantly more parents reporting availability of, and access to information as a support (χ² = 4.28, p = 0.038). Findings lend further support to the effectiveness of environmental-based interventions, involving real-life experiences. Full article

(This article belongs to the Special Issue Participation and Well Being Among Children and Youth With Childhood Onset Disabilities)

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Other

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19 pages, 1405 KiB

Open AccessConcept Paper

Definitions and Operationalization of Mental Health Problems, Wellbeing and Participation Constructs in Children with NDD: Distinctions and Clarifications

by Mats Granlund, Christine Imms, Gillian King, Anna Karin Andersson, Lilly Augustine, Rob Brooks, Henrik Danielsson, Jennifer Gothilander, Magnus Ivarsson, Lars-Olov Lundqvist, Frida Lygnegård and Lena Almqvist

Int. J. Environ. Res. Public Health 2021, 18(4), 1656; https://doi.org/10.3390/ijerph18041656 - 9 Feb 2021

Cited by 33 | Viewed by 11923

Abstract

Children with impairments are known to experience more restricted participation than other children. It also appears that low levels of participation are related to a higher prevalence of mental health problems in children with neurodevelopmental disorders (NDD). The purpose of this conceptual paper is to describe and define the constructs mental health problems, mental health, and participation to ensure that future research investigating participation as a means to mental health in children and adolescents with NDD is founded on conceptual clarity. We first discuss the difference between two aspects of mental health problems, namely mental disorder and mental illness. This discussion serves to highlight three areas of conceptual difficulty and their consequences for understanding the mental health of children with NDD that we then consider in the article: (1) how to define mental health problems, (2) how to define and assess mental health problems and mental health, i.e., wellbeing as separate constructs, and (3) how to describe the relationship between participation and wellbeing. We then discuss the implications of our propositions for measurement and the use of participation interventions as a means to enhance mental health (defined as wellbeing). Conclusions: Mental disorders include both diagnoses related to impairments in the developmental period, i.e., NDD and diagnoses related to mental illness. These two types of mental disorders must be separated. Children with NDD, just like other people, may exhibit aspects of both mental health problems and wellbeing simultaneously. Measures of wellbeing defined as a continuum from flourishing to languishing for children with NDD need to be designed and evaluated. Wellbeing can lead to further participation and act to protect from mental health problems. Full article

(This article belongs to the Special Issue Participation and Well Being Among Children and Youth With Childhood Onset Disabilities)

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