Towards multi-faceted outcomes of participation-based interventions: mapping the PREP's effects for children and youth with disabilities.

PURPOSE: Systematically organizing participation effects may guide participation-based research designs in rehabilitation. This perspective paper uses existing evidence on Pathways and Resources for Engagement and Participation (PREP) to showcase the multitude of effects from a single intervention and synthesize the magnitude of these effects. METHODS: An outcome matrix of participation effects comprising three dimensions (intermediate, instrumental, ultimate) and two levels (transient, enduring) was used to systematically map PREP's effects. Forest plot demonstrated clinically important changes in the Canadian Occupational Performance Measure (COPM) across studies. Effect sizes were calculated. RESULTS: The majority of outcomes from 11 studies were mapped to ultimate-transient effects (e.g., changes in participation of self-chosen activities), followed by instrumental-transient effects (e.g., changes in motor body functions). Fewer outcomes were mapped to ultimate-enduring effects (e.g., changes of participation for a longer period or across settings) or intermediate-enduring effects (e.g., therapist-applied knowledge), demonstrating the gaps for investigating enduring effects. COPM changes in most studies (89%) showed clinical significance with small to large effects. CONCLUSIONS: Systematic mapping from PREP example guides categorizing multidimensional outcomes. Future participation-based studies can employ individual-based mixed-methods designs to delve into the long-lasting enduring outcomes of youth capacity-building and the transformative process of pursuing meaningful participation goals.

Systematically organizing participation effects according to the proposed matrix enhances understanding of multidimentisonal outcomes from a single participation-based intervention.Child/youth-engaging interventions like Pathways and Resources for Engagement and Participation (PREP) can offer a multitude of benefits that promote outcomes of participation and physical and mental health, enhancing efficient/effective rehabilitation services.It is essential that future intervention designs prioritize long-lasting/enduring effects across broad settings and capture underlying processes and capacity building of children/youth toward sustainable participation outcomes.

Disseminating the F-Words for Child Development to Parents of Children With Developmental Disabilities in Iran: A Qualitative Pilot Feasibility Study.

BACKGROUND: Attitudes toward childhood disability have historically focused on biomedical efforts on 'fixing'. The introduction of WHO's ICF framework for health and Canadian researchers' 'F-words' (functioning, fitness, fun, friends, family and future) have significantly changed the field. To explore whether the F-words ideas influenced parents' perspectives on their child's abilities and rehabilitation goals, this qualitative pilot study introduced the F-words to Iranian parents with a child with a developmental disability. METHODS: This study was conducted in Tabriz, Iran, in 2023, using Iranian educational F-words materials built on ideas available on the CanChild F-words Knowledge Hub. Data were collected through semistructured interviews with five mothers of children <5 years old with a developmental disability before and after attending an 'F-words Awareness Session' and analysed using thematic analysis. RESULTS: In the preinterviews, six themes (and 20 subthemes) were identified: (i) routines (5); (ii) challenges (4); (iii) parental concerns (3); (iv) child's needs and priorities (3); (v) the role of parents in satisfying needs and challenges (2); and (vi) expectations of rehabilitation (3). In the postinterview, the same six themes and four additional subthemes emerged. CONCLUSION: Findings from the pilot study showed that the intervention had an impact on the attitudes and behaviours of participants. Specifically, teaching about the F-words reduced parents' emphasis on the concept of 'normality'. Families' positive response to the 'F-words Awareness Session' indicates their openness to incorporating this approach into their daily lives. These findings highlight the potential benefits of utilizing the F-words in rehabilitation in Iran. Studies like these can serve as a foundation for developing effective strategies for integrating the F-words into existing rehabilitation practices in Iran.

A qualitative exploration to inform an oral health training for disability care workers in Burkina Faso.

AIM: To explore enablers and barriers to the creation of an oral health training for care workers at specialized centres for children with disabilities in Ouagadougou. DESIGN: This was a formative study informed by the Theoretical Domains Framework using qualitative methods. METHODS: Qualitative observations and 14 semi-structured interviews were conducted with care workers from six specialized centres for disability. RESULTS: Carer workers emphasized that a successful oral health training must account for available resources and competencies in each specific centre. Part of the training must be dedicated to oral hygiene targeted for people with disabilities and provide knowledge about risk factor management. Care workers must be empowered through the training with practical skills and tools to manage regular toothbrushing and identify oral health needs of their dependents. CONCLUSION: This study gathered valuable and unique perspectives about the roles of care workers of children with disabilities in Ouagadougou and underscores the need for improving access to oral health and care services for children with disabilities in low-resourced settings. IMPLICATIONS FOR PATIENT CARE: Teams planning oral health promotion activities in low resourced settings for vulnerable population groups can benefit from the methodology and results of this research for ensuring their interventions are appropriate and relevant. IMPACT: This is a unique field study conducted in a scarcely researched area of caregiving practices for children with disabilities in a low-income country, Burkina Faso. Results from the disability centre observations and interviews with local caregivers are of great value to any team planning health projects in similar low-resourced settings. Psychiatric and mental health nursing practices are highly context-dependent, thus using proposed qualitative methods can help to ensure that planned interventions are appropriate and relevant. PATIENT OR PUBLIC CONTRIBUTION: There was no patient contribution in this study.

School-Based Occupational Therapists' Roles Supporting Transitions Into and Throughout Kindergarten to Grade 12: A Scoping Review.

IMPORTANCE: Large educational transitions occur when students enter and exit school or move between grades or divisions within the kindergarten to Grade 12 (K-12) school system. For students with disabilities, the quality of large educational transitions affects academic and postschool outcomes, which is germane to school-based occupational therapists. OBJECTIVE: To explore the school-based occupational therapy literature to describe the roles of occupational therapists in supporting large educational transitions and to identify relevant terminology. DATA SOURCES: We searched six databases (CINAHL, EMCare, Embase, ERIC, MEDLINE, and PsycINFO) for peer-reviewed publications in English with no date limitations. STUDY SELECTION AND DATA COLLECTION: We included articles focused on children and youth with disabilities and school-based occupational therapy services supporting large transitions within K to 12 education. Using directed content analysis, we reported on publication characteristics, occupational therapy roles, and terminology. FINDINGS: We included 46 publications spanning 37 yr that addressed transitions into school (n = 3), within K to 12 grades or divisions (n = 10), or to exit secondary education (n = 33). Occupational therapists assumed many roles in supporting large transitions, some much more frequently than others; 125 transition terms were used across included articles with few terms explicitly defined. CONCLUSIONS AND RELEVANCE: School-based occupational therapists' involvement in educational transitions is extensive, with potential for expansion. Consistency in terminology would support future research and practice. Plain-Language Summary: A large educational transition occurs when students move between a school, grade, or division as part of their K to 12 education. For students with disabilities, the quality of a large educational transition affects their academic and postschool outcomes. This review provides an understanding of how school-based occupational therapists support educational transitions for youth with disabilities. The review found that occupational therapists took on many roles, with the potential for expanding their roles. The review also identified 125 transition terms that were used across the literature review and found that few terms were explicitly defined. Consistency in terminology would support future research and expanded occupational therapy practice in this area.

Reliability and validity of a measure of service providers' perceptions of child and parent engagement in pediatric rehabilitation therapy sessions.

BACKGROUND: There is growing interest in client engagement in pediatric rehabilitation. This article investigated the psychometric properties of a measure of service providers' perceptions of the affective, cognitive and behavioural engagement of both children with disabilities and their parents in pediatric rehabilitation therapy sessions. METHODS: Test-retest reliability of the Pediatric Rehabilitation Intervention Measure of Engagement-Service Provider version (PRIME-SP) was examined using engagement ratings made by 60 service providers for 77 children and 73 parents. Construct validity was examined using the known-group validity technique, utilizing service providers' ratings of the engagement of parents and their children attending the same session with the service provider. We hypothesized that there would be significantly different, yet moderately correlated engagement ratings for children and their parents. RESULTS: There was evidence of moderate test-retest reliability for the child ratings, indicative of dynamicity across occasions, but also a degree of consistency, as aligned with our expectations. Service providers' ratings of parent and child engagement were not significantly correlated and paired t-tests indicated significantly higher engagement scores for parents than children. CONCLUSIONS: The study provides preliminary evidence to support the reliability and validity of the PRIME-SP as a tool for service providers to document, reflect on and monitor child and/or parent engagement.

The need for prosthetic and orthotic rehabilitation inclusion in early pediatric intervention centers in India: A viewpoint.

The article focuses on the need for prosthetic and orthotic services in India to improve the quality of life of children with disabilities through early identification and intervention. Early intervention is the earliest identification and comprehensive service and support for children with developmental delays and disabilities ranging from 0 to 6 years to improve their ability to adapt to society. A practical early intervention delays or prevents future complications and prepares the child for functional adult life. It may positively affect the quality of life of the differently abled and their family members, and they can lead an active personal and social life. Also, such interventions promote the well-being and dignity of the differently abled and their parents, which may result in national economic progress. Prosthetic and orthotic rehabilitation facilities under the leadership of qualified professionals are needed in India's government and private setups.

Subjective well-being and social inclusion at school for students with a disability, according to their parents, in France.

BACKGROUND: Providing inclusive, quality education for all children is one of the United Nations' sustainable development goals for 2030. AIMS: The aim of this study, carried out in France among 491 parents of children with a disability aged 3 to 18 and enrolled in ordinary schools, is to measure the well-being and social inclusion of children and to identify the factors that promote well-being and social inclusion at school. METHODS AND PROCEDURES: The parents fill in various questionnaires relating to the well-being and social inclusion of their child, the quality of their relationship with the teacher and their satisfaction with the accommodations offered at school. They also provide information about their child and their socio-economic situation. OUTCOMES AND RESULTS: Regression analyses show that well-being and social inclusion depend on the nature of the child's disability and decrease with age but do not significantly depend on child's gender and academic level or social background. Furthermore, well-being and social inclusion can be significantly improved when the quality of the parent-teacher relationship and school accommodations are satisfying. CONCLUSIONS AND IMPLICATIONS: The results of this study encourage the development of quality parent-teacher relationships to promote well-being at school.

Effectiveness of school-based interventions on child sexual abuse knowledge in children with disabilities: Systematic review and meta-analysis.

BACKGROUND: Children with disabilities (CWDs) constitute a substantial segment of the population who encounter abuse, emphasizing the need to comprehend the influence of school-based interventions on this susceptible group. AIM: This systematic review and meta-analysis aimed to identify and evaluate the effectiveness of school-based interventions in enhancing child sexual abuse (CSA) knowledge among CWDs. PARTICIPANTS: This meta-analysis incorporated seven published studies, encompassing 387 CWDs. METHODS: Our study synthesizes findings from seven experimental and quasi-experimental studies, adhering to the PRISMA guidelines. The study was registered in PROSPERO. The literature search, conducted between September 25, 2023, and October 2, 2023, employed various databases and keywords relevant to the study's scope. The research question and articles' eligibility were assessed using the Population, Intervention, Comparison, Outcomes, and Study type (PICOs). The meta-analysis was conducted using the Comprehensive Meta-Analysis (CMA) software. RESULTS: The school-based intervention greatly impacted CWDs' CSA knowledge scores (Hedges's g = 1.026 [95% CI: 0.845; 1.208], z = 11.074, p = 0.000). The findings of this meta-analysis demonstrate that Questionnaire/scale-based knowledge measurement (Hedges's g = 2.586 [95% CI: 0.920; 4.252], z = 3.043, P = 0.002) and Vignette-based knowledge measurement (Hedges's g = 1.065 [95% CI: 0.655; 1.474], z = 5.100, p = 0.000) are effective in assessing CWDs' knowledge of CSA. CONCLUSION: This systematic review and meta-analysis of seven randomized controlled studies and quasi-experimental studies provide robust evidence supporting the effectiveness of school-based interventions in significantly enhancing CSA knowledge among CWDs. IMPLICATIONS TO PRACTICE: These findings are potentially significant evidence for education professionals, including educators and school health nurses.

Factor structure of FUNDES-Child-SE measuring the participation and independence of children with disabilities.

BACKGROUND: FUNDES-Child-SE is a proxy rating questionnaire for measuring participation and independence in children with disabilities in a Swedish context. It includes the components of frequency of attendance, engagement and independence. The original, Taiwanese FUNDES-Child 7.0, has previously been found to have a four-factor structure for frequency of participation and a two-factor structure for independence. The aim of this study was to test the factor structure in FUNDES-Child-SE. The factor structure is an important part of construct validity. METHODS: Caregivers of 163 children with disabilities aged 6-18 years participated in this cross-sectional study. Exploratory factor analysis was used to find the factor structure for Engagement. Confirmatory factor analysis was used to test the factor structure for all three components. RESULTS: The proposed factor structure for frequency of participation (daily living participation frequency, mobility participation frequency, learning participation frequency and community participation frequency) and independence (daily living independence and social participation independence) fit with data from FUNDES-Child-SE after excluding three to five items and adding two to five covariances of residuals. In the engagement component, two factors, named engagement in informal activities and engagement in formal activities, were found. After excluding one item and adding 10 covariances of residuals, the factor structure had an acceptable fit to data. CONCLUSIONS: Differences in components' factor structure indicate that attendance and engagement are separate aspects of participation. Before using numeric scores from FUNDES-Child-SE in clinical settings, responsiveness and interpretability should be evaluated.

Addressing the Paediatric Physiotherapy's Unmet Needs.

This viewpoint emphasises the vital role that paediatric physiotherapy plays in satisfying children's rehabilitation requirements, especially those of children with chronic illnesses and impairments. It highlights issues including inadequate education and a lack of personnel, underscoring the need for individualised care in a variety of paediatric settings. The letter promotes more knowledge, financing, and research to improve the quality and accessibility of paediatric physical therapy services offered worldwide. It urges medical practitioners and legislators to address these significantly unmet needs in order to improve developmental outcomes and assure children's optimal physical well-being through the prioritisation of early intervention and tailored therapy. Key Words: Paediatric physiotherapy, Rehabilitation, Physical therapy.

'There was nothing, just absolute darkness': Understanding the needs of those caring for children and young people with complex neurodisability in a diverse UK context: A qualitative exploration in the ENCOMPASS study.

BACKGROUND: Children and young people (CYP) with complex neurodisability experience multiple physical, communication, educational and social challenges, which require complex packages of multidisciplinary care. Part of the holistic care required includes supporting the families and parents/caregivers. The aim of the wider study was to introduce a new programme ('Ubuntu') to parents/caregivers and healthcare professionals (HCPs) in order to test the feasibility and acceptability of the concept and content, with the goal of potential adaptation for the UK in mind. Data collection and analysis uncovered rich data on caregiving journeys, navigation of health services, and perceived service gaps. This paper focuses solely on these topics. Further papers will report on the feasibility and adaptation data. METHODS: Two rounds of semi-structured interviews were conducted with 12 caregivers of CYP with complex neurodisability and six HCPs from a variety of disciplines, recruited from a community child health service in London Borough of Newham, UK in 2020. The interviews included open-ended questions to explore caregiving journeys, experiences of navigating health services and perceived service gaps. Transcripts were analysed using a data-driven inductive thematic analysis. RESULTS: Three themes were identified that related to the aim of understanding caregivers' experiences and unmet needs relating to current service provision. These were (1) Caregiver Mental Health, (2) The Information Gap and (3) The Need for Holistic Support. Mental health difficulties were reported, particularly around the period of diagnosis. Priority needs included the provision of clear information about the diagnosis and services offered, opportunities to forge peer support networks and for services across the community to collaborate. CONCLUSIONS: The delivery of health services for CYP with neurodisability should encompass the broad needs of the family as well as meeting the clinical needs of the CYP.

[Trust in socialization institutions as a necessary social condition for effective integration of disabled children into society].

The article is devoted to the analysis of the problem of trust in the institutions of socialization of children with disabilities. The role of such institutions of socialization of disabled children as family, education, healthcare, public organizations, and the media is analyzed. The analysis was based on the results of a sociological study conducted in May-June 2023 among family members raising disabled children (Moscow, St. Petersburg, Belgorod, Kursk). The study revealed significant differences in respondents' assessments of their trust in socialization institutions. It has been established that the media has become an outsider of trust. In the course of the analysis, the authors concluded that it is necessary to apply an integrated approach to the activities of institutions for the socialization of children with disabilities, which should be based on interdepartmental interaction «family - NGOs - authorities - healthcare, education - media - business¼. The proposed approach, according to the authors, ensures the effectiveness, targeting and transparency of activities.

Fatherhood in disability rehabilitation in the United Arab Emirates: Exploring fathers' involvement in raising children with disabilities.

BACKGROUND: The first agent of socialisation is the family, who are expected to facilitate the inclusion of children in societal activities. While mothers' voices have been widely captured in the literature regarding their experiences raising children with disabilities, fathers' perceptions of their knowledge of and involvement in the development of children with disabilities have been understudied, particularly in non-Western contexts. AIM: The main aim of this study was to examine fathers' perceptions of their involvement in raising children with disabilities in the United Arab Emirates. METHODS AND PROCEDURES: In total, 469 fathers were recruited to understand their involvement in raising their children with disabilities. The Fathers' Involvement in Development and Rehabilitation Scale was used to collect data, which were analysed using SPSS and AMOS. OUTCOMES AND RESULTS: The results showed that fathers rated themselves highly for their attitudes, support, and participation in training to support their children with disabilities. Demographic variables, such as nationality and educational qualifications, provided additional insight into their involvement in raising their children with disabilities. CONCLUSIONS AND IMPLICATIONS: The study concludes with suggestions for training programmes to change fathers' attitudes towards children with disabilities, as such programmes can enable them to better support their children's development.

Inclusion, Participation, Belonging = Surviving, Thriving, Flourishing.

PURPOSE: To share my perspectives on how pediatric physical therapists support children with disabilities and their families to maximize their potential to flourish. KEY POINTS: Best practice supports the inclusion of people with disabilities in all aspects of society. Policy statements from governmental agencies, research universities, advocacy, and non-governmental organizations all support inclusion. The concept of belonging and how pediatric physical therapists can promote belonging is less familiar to pediatric physical therapists than inclusion and participation. Essential elements necessary to bring about a sense of belonging in young children will be presented, leading to a discussion on the role of the pediatric physical therapist and key implications for the early childhood system of care. CONCLUSIONS: Pediatric physical therapists support children with disabilities and their families to maximize the potential of every child. I propose that to do this, we must focus our interventions to promote a child's active participation in community life and build programs and relationships that promote belonging. CLINICAL RELEVANCE: Interventions for children with disabilities will be successful by focusing on the outcomes that promote inclusion, participation, and belonging.

Harnessing Mobility: A Medically Complex Child's Home Program Utilizing an In-Home Body Weight Support System.

PURPOSE: To describe a home program for a child with medical complexity using an over-ground body weight support (BWS) system. SUMMARY OF KEY POINTS: Children with medical complexity often use home programs due to challenges with regular therapy attendance. In this case, effective home program components including child centered design, family leadership, and best practice principles were prioritized around the PUMA (portable mobility aid for children). This BWS system was to be used for 1 hour per day to support mobility and active play. STATEMENT OF CONCLUSIONS: The CMC and family demonstrated high adherence, using over-ground BWS 87% of the 135 days it was accessible with an average daily usage of 59 min spread across 1-3 bouts per day. The average daily fun index during usage was 7/10. RECOMMENDATIONS FOR CLINICAL PRACTICE: This home program demonstrated over-ground BWS technology as a feasible, fun platform for functional mobility and socialization in a child with significant medical and physical limitations.

Impact of video vector analysis of ankle foot orthoses in children with physical disability: A 10-year clinical review.

BACKGROUND: Ankle Foot Orthoses (AFOs) are frequently prescribed to manage gait impairments in children with physical disability, and it is important that AFOs are prescribed and fitted appropriately to maximize potential benefits. AFO tuning, manipulation of the AFO footwear combination (AFO-FC) by means of video vector analysis, is routinely used to optimize AFO use. However, the incidence or types of changes that are implemented after this type of orthotic review are unknown. RESEARCH QUESTION: To investigate the impact of a multi-disciplinary video vector clinic on AFO provision in children with physical disability. METHODS: All children who attended a video vector clinic over a period of 10-years from the establishment of the clinic were included in the study. Outcomes of the clinic were grouped into 5 categories: (1) No change to AFO-FC; (2) Altered/tuned AFO-FC; (3) Discontinued AFO-FC; (4) Recast AFO; (5) Change in prescription. Data were summarised narratively. RESULTS: 141 independently ambulant children were included. The diagnoses were bilateral cerebral palsy (39 %, n=55), unilateral cerebral palsy (38 %, n=54), spina bifida (9 %, n=13), hereditary spastic paraparesis (2 %, n=3) and other (11 %, n=16). No changes were made in 52 % of cases (n=74), tuning in 22 % of cases (n=31), the AFO was recast in 13 % of cases (n=19) and discontinued in 10 % of cases (n=14). A prescription change was recommended in 3 % of cases (n=4). SIGNIFICANCE: Our findings suggest that the video vector clinic is a time efficient and effective means of assessing gait function in children with AFOs. Without assessment at the clinic, most of the children assessed would likely have been referred for a full and more time consuming 3-dimensional gait analysis. Video vector analysis at the initial AFO fitting may improve alignment and possibly reduce non-compliance at an earlier stage.

Setting the Stage for Play: Exploring the Relationship Between Play Type and Positive Caregiving Strategies During Therapeutic Playgroup.

IMPORTANCE: Although play and positive caregiving strategies have been associated with child well-being, little is known about the relationship between play type and strategies used by caregivers in early childhood. OBJECTIVE: To investigate whether a relationship exists between play type and positive caregiving strategies. DESIGN: Exploratory correlational nonexperimental design. SETTING: Early childhood center. PARTICIPANTS: A convenience sample that included 60 observations of 14 caregivers during a therapeutic playgroup with 14 children with and without disabilities ages 15 mo to 3 yr (4 fathers, 3 mothers, 1 nanny, and 6 female early childhood teachers; age range = 30-39 yr). The caregivers were Black (n = 1; 7.1%), Hispanic (n = 5; 35.7%), and White (n = 8; 57.1%). OUTCOMES AND MEASURES: Positive caregiving strategies were scored using the Parenting Interactions with Children: Checklist of Observations Linked to Outcomes. RESULTS: Results revealed no significant correlations between play type and positive caregiving strategy. There was a positive, significant correlation between caregiving strategies (affection, responsiveness, encouragement, teaching, and total; rpbs = .767-.970, n = 58, p = .001). The play type and caregiver type variables did not predict total positive caregiving strategies, F(2, 57) = 2.147, p = .126. One variable, caregiver type, added statistical significance to the prediction (p = .045). CONCLUSIONS AND RELEVANCE: The findings show no relationship between play type and positive caregiving strategy. Consideration of the types of caregivers participating in a therapeutic playgroup and their roles and use of positive strategies during play is worthy of further investigation. Plain-Language Summary: This study explored how parent and teacher caregivers supported children (both with and without disabilities) during a therapeutic playgroup at an early childhood center. Therapeutic playgroups are a special type of group play in which a trained professional helps guide play activities to support participation. The researchers wanted to see whether there was a connection between the type of play the children engaged in and how the adult caregivers interacted with them. The surprising finding was that there was no link between play type and how caregivers interacted. However, the caregivers often used positive strategies with the children, regardless of the play activity. Interestingly, type of caregiver (parent, teacher) seemed to make a slight difference in how they interacted with the children during playtime. Overall, this study suggests that more research is needed to understand how the types of play activities and objects might influence caregiver interactions during group play.

True inclusion: evaluation protocol for an approach to increase meaningful participation of children with disability in athletics.

Children with disability face many barriers to participating in community sports. Little Athletics Australia aims to increase fair and meaningful inclusion via a new structure which will enable all children to take part in the same contest by competing for their 'personal best' score. Named the True Inclusion Method (TIM), this new structure will be piloted in 13 sites across six states. Formative evaluation of this pilot will critique TIM and its implementation using observations of events, and interviews and surveys with child athletes with and without disability, their parents/carers and Little Athletics volunteers. Implementation outcomes are acceptability, appropriateness, adoption, feasibility and fidelity. Qualitative data will be analysed thematically. TIM is designed to encourage inclusive participation by children with disability in sporting events, and to improve the competitive experience for all children by celebrating personal achievement and fostering fun.