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.

Development and evaluation of the Family Needs Questionnaire for Pediatric Rehabilitation.

PURPOSE: To develop the Family Needs Questionnaire-Pediatric Rehabilitation (FNQ-PR) version and evaluate the reliability and concurrent validity of this self-report measure for caregivers of children with disabilities who receive pediatric rehabilitation services. MATERIALS/METHODS: The 39-item FNQ-PR was developed through a modified Delphi Technique. For test-retest evaluation, parents completed the FNQ-PR twice through an online REDCap survey, 1-3 weeks apart. Concurrent validity data (parent-report Impact on Family Scale [IFS-15] and Measure of Processes of Care [MPOC-20]) were collected at baseline. Reliability analyses included ICCs (95%CI) and internal consistency evaluation. RESULTS: Twenty-five caregivers of children ages 2-18 years (mean age 12.2 years) with a disability completed the FNQ-PR at baseline, and 21 completed the retest. FNQ-PR total score demonstrated excellent test-retest reliability (ICC = 0.84); internal consistency was high. The FNQ-PR total score was strongly negatively associated with IFS-15 total score (r = -0.62) and showed fair to strong association with MPOC subscale scores (0.45 ≤ r ≤ 0.70). Participants did not identify issues with the online format or FNQ-PR item rating. CONCLUSIONS: The FNQ-PR demonstrated excellent overall reliability and strong evidence of validity. It fills a gap in clinical care of families of children with disabilities, providing a systematic way for families to identify the extent to which their needs are perceived to have been met. Clinicians can use this tool to target unmet needs that are most important to families. FNQ-PR use in future research will support exploration of the impact of specific child and family factors on family needs.

Impact of COVID-19 on clinical practice of UK-based speech and language therapists working with school-aged children with neurodisability and oropharyngeal dysphagia: A survey.

BACKGROUND: The COVID-19 pandemic and response changed clinical service delivery and practice for speech and language therapists (SLTs) in the United Kingdom. SLTs work with children with neurodisability regarding both difficulties with their communication and eating and drinking skills (oropharyngeal dysphagia). This survey aimed to specifically explore the impact of the COVID-19 pandemic on SLT practice for school-aged children with dysphagia. METHODS: UK-based SLTs working with school-aged children with neurodisability and oropharyngeal dysphagia were recruited to share their perceptions on the impact of COVID-19 on practice. Four questions focusing on COVID-19 impact were part of a larger online survey exploring SLT clinical practice regarding mealtime management of children with neurodisability and oropharyngeal dysphagia, which included demographic information, service delivery, assessment and intervention practices. COVID-19 impact questions were a mixture of multiple choice and free text responses. The survey was disseminated using professional networks and social media, between 14 May and 30 July 2021. Data were analysed using descriptive statistics and qualitative content analysis. RESULTS: One hundred and two participants answered at least one of the four COVID-19 questions. Eighty-two per cent of SLTs either agreed or strongly agreed that COVID-19 impacted on service delivery to children and families. Negative impacts on service delivery included school absences/closures, home visiting restrictions, families declining input and/or having barriers to telehealth use and the impact of mask wearing on interactions. Positive impacts included increased telehealth access and skills, increased contact with families and focus on children's eating and drinking function within the home environment. Participants aimed to maintain the increased contact with families alongside a hybrid service delivery approach of in-person and virtual appointments. CONCLUSIONS: This survey provides novel information capturing SLT practice change across two waves of COVID-19 and return to in-person practice for UK children with neurodisability.

The experiences of families of children with cerebral palsy and complex disability after three years accessing the National Disability Insurance Scheme.

INTRODUCTION: In Australia, children with cerebral palsy and complex disability receive funded supports through the National Disability Insurance Scheme (NDIS). This individualised funding scheme requires parents to navigate and advocate on behalf of their child, supported by expert reports, recommendations, and allied health services. Supports aim to enable participation in all areas of daily life, which may be otherwise largely inaccessible to children with complex disability and their families. This study aimed to explore the experiences of families of children with complex disability after 3 years accessing the NDIS. METHODS: A qualitative research design with a demographic questionnaire and in-depth interview was undertaken. Purposive sampling was used to recruit participants from one organisation providing occupational therapy and other allied health services. Data analysis implemented Braun and Clarke's thematic approach to examine the experiences of participants. CONSUMER AND COMMUNITY INVOLVEMENT: This research was conducted with a registered National Disability Insurance Scheme provider to give voice to parent consumers who raise children with complex disability. FINDINGS: Seven mothers and one father (N = 8) of children with complex disability were interviewed. Most parents reported increased success and satisfaction navigating the scheme. Five overall themes were generated from the data: pivotal roles of families, parental empowerment, life-changing equipment, the fallibility of the scheme, and a critical scheme. CONCLUSION: Parents reported reliance on the scheme for their child's basic daily care and a more enriched life for their child and family. Parents were grateful for the scheme but experienced inconsistencies, navigation difficulties, and variable choice and control. Most parents had fears about the sustainability of the scheme, translating into uncertainty about their child's future. Allied health professionals, including occupational therapists, are key advocates for children with complex disability and their families. Collaboration through sharing knowledge and skills to support children, their families, and carers is key to empowering parents to navigate the NDIS. PLAIN LANGUAGE SUMMARY: The National Disability Insurance Scheme (NDIS) provides funding for people with permanent and significant disability. Children with cerebral palsy (and other complex disability) are lifetime users of the NDIS. For children with complex disability, their families are crucial to ensuring that their daily needs are being met, including providing medication. Previous research indicated that parents rely on the NDIS to support their children; however, there have been various challenges such as long wait times for equipment and difficulty understanding how to use the scheme. This study explored the experiences of families of children with complex disability, after more than 3 years of being an NDIS participant. Eight parents from one therapy service provider completed a short questionnaire about themselves, their child, and their family, followed by an interview with the first author. Four authors (occupational therapists) worked together to design and implement this study. The findings highlighted several key points: the important role of parents as caregivers; parents became more knowledgeable and confident to navigate the NDIS with time; equipment funded by the NDIS was life-changing; the NDIS has ongoing issues; and the crucial nature of the NDIS. Occupational therapists can be extremely important to families, including with supporting families to navigate the NDIS and advocating for them. Occupational therapists must stay current with their knowledge of the NDIS as they provide lifetime support, including prescribing equipment, technology, and home modifications.

Application of the child community health inclusion index for measuring health inclusion of children with disabilities in the community: a feasibility study.

BACKGROUND: Participation in the community is a fundamental human right for children with disabilities and is a key component of their health and development. Inclusive communities can enable children with disabilities to participate fully and effectively. The Child Community Health Inclusion Index (CHILD-CHII) is a comprehensive assessment tool developed to examine the extent to which community environments foster healthy, active living for children with disabilities. OBJECTIVES: To assess the feasibility of applying the CHILD-CHII measurement tool across different community settings. METHODS: Participants recruited through maximal representation, and purposeful sampling from four community sectors (Health, Education, Public Spaces, Community Organizations) applied the tool on their affiliated community facility. Feasibility was examined by assessing length, difficulty, clarity, and value for measuring inclusion; each rated on a 5-point Likert scale. Participants provided comments for each indicator through the questionnaire and a follow-up interview. RESULTS: Of the 12 participants, 92% indicated that the tool was 'long' or 'much too long'; 66% indicated that the tool was clear; 58% indicated that the tool was 'valuable' or 'very valuable'. No clear consensus was obtained for the level of difficulty. Participants provided comments for each indicator. CONCLUSION: Although the length of the tool was regarded as long, it was seen to be comprehensive and valuable for stakeholders in addressing the inclusion of children with disabilities in the community. The perceived value and the evaluators' knowledge, familiarity, and access to information can facilitate use of the CHILD-CHII. Further refinement and psychometric testing will be conducted.

'Our time is precious': An exploration of parental feeding behaviours for boys with Duchenne muscular dystrophy.

INTRODUCTION: Due to the increased risk of obesity for boys with Duchenne muscular dystrophy (DMD), recent guidelines recommend that dietary intake is carefully managed. Parents play an important role in the development of their child's eating behaviours and patterns. However, despite what is known about the increased risk of obesity for children with DMD, little is known about parental feeding behaviours in this population. The objective of this study was to qualitatively explore the experiences of parents of children with DMD around their child's weight management and understand what influences their feeding behaviours. METHODS: This paper reports a secondary data analysis. Semi-structured, individual interviews were conducted and analysed using qualitative description. RESULTS: Thirteen parents were interviewed for the study. Three themes were developed: (1) parent responses to healthcare provider interactions, (2) mixed emotions contributing to feeding approach and (3) variable parenting feeding styles. Within the third theme, two subthemes arose including (1) control and preoccupation and (2) striking a balance. CONCLUSION: Given the potential impact of higher weights on the progression of DMD, it is important that healthcare providers explore feeding behaviours with families. However, it is essential that healthcare providers consider the impact of these conversations on parents, as well as the broader issues that may place additional pressure on the lives of families.

Youth and family engagement in childhood disability evidence syntheses: A scoping review.

Within the last decade, stakeholder engagement in research has become increasingly popular in childhood disability research; however, literature on the engagement of youth with neurodisabilities and their families in evidence syntheses is underdeveloped. Involving patients as partners in research has the potential to improve applicability and relevance of the research and benefit patient partners (e.g. enhanced self-esteem, increased research knowledge and skills); however, the methods, challenges, outcomes and recommendations of engaging youth with neurodisabilities and their families in evidence syntheses are unknown. Two parents of youth with complex disability needs were engaged as partners throughout this review. Following methods outlined by Arksey and O'Malley (2005), the primary research question in this scoping review is twofold: (i) what activities have youth with neurodisabilities and their families been engaged in as part of evidence syntheses and (ii) what were the outcomes of that engagement? After full text review of 369 articles, nine articles were included. Youth and families were engaged prior to the evidence synthesis and at every stage in the project, most often during data analysis where they contextualized the findings. Youth and family engagement were not formally evaluated; however, positive outcomes were reported by parents and researchers. Challenges such as increased time, sustaining engagement, and parents' dissatisfaction with their level of involvement were reported. Recommendations centred around providing partners with information, building relationships via social media, and openly communicating about roles, feedback and logistics. Childhood disability researchers should be aware of how they can increase engagement opportunities at all stages of evidence syntheses and how they might improve accessibility for youth with neurodisabilities and their families. Further research is needed to solidify a unified framework for conduct and reporting of youth and family engagement in evidence syntheses.

Content development of the Child Community Health Inclusion Index: An evaluation tool for measuring inclusion of children with disabilities in the community.

BACKGROUND: Addressing barriers in the environment can contribute to health and quality of life for children with disabilities and their families. The Community Health Inclusion Index (CHII) is a measurement tool developed in the United States to identify environmental barriers and facilitators to community health inclusion. The CHII adopts an adult viewpoint and aspects crucial for children may have been omitted. AIMS: This study aimed to develop a comprehensive list of items that are relevant for the community inclusion of children with disabilities in the Canadian context. METHODS: The relevance and priority of items generated from a review of existing guidelines and best practice recommendations for community inclusion were rated as a dichotomous response and discussed by an expert panel in relevant fields related to children with disabilities. RESULTS: A total of 189 items from 12 instruments and best practice guidelines were identified. Expert consensus contributed to a relevant and comprehensive list of items. Expert suggestions were considered to refine and reduce the item list. CONCLUSION: This study highlights the importance of a child version of a community inclusion tool, as the needs of children with disabilities differ from those of adults. It can help communities improve inclusion of children with disabilities and inform health promotion initiatives for this population.

Christy Brown's 'My Left Foot': An insider's insights into growing up with cerebral palsy.

IMPORTANCE: The field of childhood disability has undergone a sea-change in the past two decades. Remarkably, 70 years ago, the ideas now taking root were expressed with poignant clarity by Ireland's Christy Brown, providing lessons that were there to be learned, illustrating why 'My Left Foot' remains a singular contribution to the literature about child development and disability. OBJECTIVE OF THIS ESSAY: The World Health Organization's 2001 reconsideration of 'disability' (the International Classification of Functioning, Disability and Health or ICF) has spawned considerable uptake and adaptation of contemporary concepts, notably with the 'F-Words for Childhood Disability' (now the 'F-words for Child Development'). Published in 1954, Christy Brown's ground-breaking poetic autobiography 'My Left Foot' resonates today with messages that bring the ICF to life vividly and memorably. REVIEW: The author, a developmental paediatrician, has refracted the themes of 'My Left Foot' through an ICF lens to illustrate that concepts now considered modern have long been in plain sight, but sadly ignored. Christy Brown's first-person narrative animates ideas and messages for all who work in the field of childhood disability. FINDINGS: This essay is a personal reflection that draws together both contemporary 21st century concepts and ideas from the time that Christy Brown was a young author reporting his perspectives and perceptions on living with 'disability'. CONCLUSIONS AND RELEVANCE: The lessons Christy Brown generously shared 70 years ago should be heeded today. In the context of modern thinking and action regarding 'childhood disability', we need an approach to all we do that sees and respects children with 'disabilities' as whole people, that situates them in the context of family and community, that identifies and promotes their strengths and aspirations within both the health professional community and the community at large and enables them to 'become' and to 'belong'.

Care coordination of children with neurodevelopmental disabilities and medical complexity during the COVID-19 pandemic: Caregiver experiences.

BACKGROUND: The COVID-19 pandemic and subsequent public health restrictions created significant challenges for children with neurodevelopmental disabilities with medical complexity and their caregivers including restrictions in care coordination for children and their families. Care coordination enhances families' skills in accessing and coordinating medical, education and disability care across sectors and systems. OBJECTIVE: This study examined the implications of pandemic restrictions on care coordination from caregiver perspectives. These experiences can inform emergency preparedness planning and recovery strategies. METHOD: A qualitative descriptive design was utilized to explore and describe the experience of caregivers of children with neurodevelopmental disabilities and medical complexity. Nineteen caregivers were interviewed about their experience with care coordination during the pandemic. FINDINGS: Caregiver experiences of care coordination during the pandemic highlighted the importance of care coordination during a public health emergency. Two themes emerged: (1) disruptions to care coordination from initial COVID-19 restrictions leading to lack of access to supports and services, increasing level of need, and impacts of disruption for caregivers and children; and (2) adaptation and responsiveness to COVID-19 restrictions by advocating for families and managing uncertainties. RECOMMENDATIONS: Recommendations include recognition of care coordination as a protective factor, designation as an essential service and sustained or increased funding for care coordination during emergencies. Families should be engaged in identifying care needs during care coordination, including during public health emergencies.

Expert Appraisal of the 2022 Canadian Para Report Card on Physical Activity for Children and Adolescents With Disabilities.

This report provides an expert appraisal of the Canadian Para Report Card on physical activity (PA) for children and adolescents with disabilities. Thirteen indicators were graded by a panel of researchers, representatives from disability and PA organizations, and parents of children and adolescents with disabilities using benchmarks of the Global Matrix 4.0 and previous Canadian PA Report Cards. Facilitated panel discussions were used to appraise the available evidence based on data gaps, opportunities, and recommendations. The available data sources included four nationally generalizable or representative data sets. Grades were assigned to 8/13 indicators and ranged from B+ to F. Data gaps in measurement and national surveillance systems were identified. Ableism was an issue identified within some of the reporting benchmarks. The absence of PA from existing accessibility legislation in Canada was a policy gap of concern. Recommendations related to research, surveillance, and policy are provided to enhance PA among children and adolescents with disabilities in Canada.

Outdoor Physical Activity and Play Among Canadian Children and Youth With Disabilities During the COVID-19 Pandemic: Findings From the National Physical Activity Measurement Study.

This study explored the association between socioecological factors and outdoor physical activity (PA) and play in children with disabilities during the COVID-19 pandemic. Parents (N = 133) completed a survey to report changes in their child's outdoor PA and play during the pandemic (from prepandemic levels), and child, household, and neighborhood environment factors. Children with a PA-supporting parent and from multichild and White households had lower odds of reporting decreased outdoor PA. Children from multichild, higher income, married couple households and a PA-supporting parent had lower odds of decreased outdoor play. Living in neighborhoods with higher urbanization (i.e., high dwelling density, street intersections, and land-use mix) was associated with greater odds of decreased outdoor PA and play. Future research that uses larger and more representative samples of children with disabilities is needed to test for the multivariate effects of socioecological variables on outdoor PA and play.

Telerehabilitation for Children and Youth with Developmental Disabilities and Their Families: A Systematic Review.

AIM: To determine the level of evidence for the effectiveness of telerehabilitation against comparison interventions in improving child- and parent-related outcomes in children and youth with developmental disabilities. METHOD: A systematic approach, comprised of a comprehensive search; transparent study selection, data extraction, quality assessment by independent reviewers; and synthesis of sufficiently similar data (per diagnostic group, health profession, and overall level of evidence for each outcome) was undertaken. RESULTS: Fifty-five studies (29 randomized trials) were included across six diagnostic groups and ten health professions. Common telerehabilitation targets varied across diagnostic groups and included motor function, behavior, language, and parental self-efficacy. Telerehabilitation was found to be either more effective or as effective versus comparison intervention in improving 46.9% or 53.1% of outcomes, respectively. It was never found to be detrimental or less effective. Strong to moderate, limited, and insufficient levels of evidence were found for 36.5%, 24.5%, and 38.6% of the outcomes, respectively. CONCLUSION: There is sufficient evidence suggesting that telerehabilitation is a promising alternative when face-to-face care is limited. It is comparable to usual care and is more effective than no treatment. Blending in-person and telerehabilitation approaches could be beneficial for the post-pandemic future of rehabilitation in pediatric care.

The unmet need for treatment of children with musculoskeletal impairment in Malawi.

BACKGROUND: More than a billion people globally are living with disability and the prevalence is likely to increase rapidly in the coming years in low- and middle-income countries (LMICs). The vast majority of those living with disability are children residing in LMICs. There is very little reliable data on the epidemiology of musculoskeletal impairments (MSIs) in children and even less is available for Malawi. Previous studies in Malawi on childhood disability and the impact of musculoskeletal impairment (MSI) on the lives of children have been done but on a small scale and have not used disability measurement tools designed for children. Therefore in this study, we aimed to estimate the MSI prevalence, causes, and the treatment need among children aged 16 years or less in Malawi. METHODS: This study was carried out as a national cross sectional survey. Clusters were selected across the whole country through probability proportional to size sampling with an urban/rural and demographic split that matched the national distribution of the population. Clusters were distributed around all 27-mainland districts of Malawi. Population of Malawi was 18.3 million from 2018 estimates, based on age categories we estimated that about 8.9 million were 16 years and younger. MSI diagnosis from our randomized sample was extrapolated to the population of Malawi, confidence limits was calculated using normal approximation. RESULTS: Of 3792 children aged 16 or less who were enumerated, 3648 (96.2%) were examined and 236 were confirmed to have MSI, giving a prevalence of MSI of 6.5% (CI 5.7-7.3). Extrapolated to the Malawian population this means as many as 576,000 (95% CI 505,000-647,000) children could be living with MSI in Malawi. Overall, 46% of MSIs were due to congenital causes, 34% were neurological in origin, 8.4% were due to trauma, 7.8% were acquired non-traumatic non-infective causes, and 3.4% were due to infection. We estimated a total number of 112,000 (80,000-145,000) children in need of Prostheses and Orthoses (P&O), 42,000 (22,000-61,000) in need of mobility aids (including 37,000 wheel chairs), 73,000 (47,000-99,000) in need of medication, 59,000 (35,000-82,000) in need of physical therapy, and 20,000 (6000-33,000) children in need of orthopaedic surgery. Low parents' educational level was one factor associated with an increased risk of MSI. CONCLUSION: This survey has uncovered a large burden of MSI among children aged 16 and under in Malawi. The burden of musculoskeletal impairment in Malawi is mostly unattended, revealing a need to scale up both P&O services, physical & occupational therapy, and surgical services in the country.

Exploring 10 years of dissemination of the F-words for Child Development: A multifaceted case study.

BACKGROUND: There is growing interest in exploring how to move research findings into practice. Since 2014, a team of families and researchers has been working to promote and study the dissemination of the "F-words for Child Development" (Function, Family, Fitness, Fun, Friends, and Future). This case study describes our dissemination strategies and uses the Diffusion of Innovation theory to understand the factors contributing to the uptake of the F-words-a function-promoting, strengths-based, and family-centred innovation in child health and development. METHODS: Between November 2011 and November 2021, we collected data from multiple sources: our dissemination strategies, including affiliated documents/artefacts (e.g., videos and presentations) and evaluation data (e.g., surveys and Google/video analytics). We used a two-step analysis: (1) a chronological time series to describe the processes involved along with indicators of dissemination over time (e.g., increase knowledge and awareness); and (2) Diffusion of Innovation theory to explore the factors that contributed to the uptake of the F-words. RESULTS: Multifaceted dissemination strategies were essential to raise awareness and increase families' and service providers' knowledge of the F-words. These included three primary strategies: (i) development and distribution of educational materials; (ii) presentations at educational meetings; and (iii) educational outreach visits. Additional strategies, such as the use of mass media, collaboration with early adopters/champions, and the involvement of family members further supported dissemination efforts. Diffusion of Innovation factors (innovation characteristics, time, social systems, and communication channels) all contributed to the uptake of this innovation. CONCLUSIONS: Purposeful planned dissemination practice, to increase knowledge and awareness of an innovation, is an important step in the knowledge translation process. Over a period of 10 years, through the use of multiple dissemination strategies conducted in partnership with families and service providers, the F-words have spread globally. Diffusion of Innovation theory has served to help understand how and why the F-words are being shared and adopted around the world.

Perceptions of family-centred care among caregivers of children with cerebral palsy in South India: An exploratory study.

BACKGROUND: Parental views and expectations about family-centred care (FCC) need to be understood for its successful implementation. Knowledge of caregiver's perceptions and needs, within their social and cultural context, forms the basis for effective health care partnerships with families. The purpose of this study was to explore perceptions about FCC among caregivers of children with cerebral palsy (CP) in South India. METHOD: Fourteen caregivers of children with CP (aged 4-12 years) living in rural areas of the coastal region of Karnataka, India, participated in this qualitative study. Face-to-face semi-structured interviews were recorded and transcribed for analysis using the framework and hybrid approaches. Thematic mapping of the categories and themes was done to explore relationships about perceptions of FCC. RESULTS: Caregiver's life emerged inductively as a new theme highlighting caregiver's own physical and mental health, family roles and well-being, integrating the onus of care with household responsibilities, limited participation in personal activities and social isolation. The qualitative findings revealed the ubiquity of respectful and trusting relationships with health professionals while expressing paucity of coordinated comprehensive care, sporadic partnerships and opportunities for shared decision-making; desire for receiving specific information related to child's progress and prognosis; and general information on community resources and the need of empowerment and support groups. CONCLUSION: Our study has practical implications for the implementation of FCC within the South Indian context, by recognizing unique caregiver needs and expectations in sync with cultural perspectives towards childhood disability such as societal stigma, values and traditional beliefs; attitudes towards medical professionals; and life stressors and gender responsibilities.

Implementing Pathways and Resources for Engagement and Participation (PREP) for Children with Disabilities in Inclusive Schools: A Knowledge Translation Strategy.

Aims: To examine the effectiveness of PREP (Pathways and Resources for Engagement and Participation) knowledge translation (KT)-program on (a) change in practice behaviors and improved knowledge of school-based occupational therapists, and (b) participation of children with disabilities in inclusive education.Methods: A mixed-methods design was employed. Therapists (n = 39) completed a 30-hour program. Each therapist applied PREP intervention to one child (n = 39) aged 4-15 (Mean = 9.31, SD = 2.4). Therapists' outcomes included: (a) knowledge of PREP evaluated using a clinical vignette, analyzed descriptively, (b) change in practice behavior measured by the Professional Evaluation and Reflection on Change Tool (PERFECT), analyzed thematically. Change in children' participation pre- and post-KT-program and during follow-up was measured by the Canadian Occupational Performance Measure (COPM), analyzed using ANOVA.Results: Therapists acquired knowledge of PREP (vignette mean score 17.7/20). PERFECT revealed therapists' self-perceived changes in practice: incorporating an environmental perspective, expanding partnerships, and redirecting focus on participation. Completing the KT-program was a primary enabler and reason for change. Children's participation significantly improved post KT-program and during follow-up in both performance (p < 0.001) and satisfaction (p < 0.001).Conclusions. KT strategies, as illustrated in this study, accelerated the uptake of evidence-based interventions, minimizing existing 'know-do' gaps and promoting children's health through participation.

Childhood disability, social class and social mobility: A neglected relationship.

Disability theorists have long highlighted the role of institutional, social, and environmental barriers in constructing disability, emphasizing its parallels with other socially constructed axes of stratification. However, despite theoretical developments toward sociological understandings of disability, social stratification and life-course research have largely neglected childhood disability as a social division. As a result, we still know little surrounding the socio-economic attainment of disabled children and young people. Drawing on Next Steps data, this research note highlights stark overlooked inequalities between disabled and non-disabled young people's activity status and social mobility in early adulthood. We specifically focus on the importance of social class for disabled young people's outcomes, emphasizing the need for intersectional analyses of disability inequalities. We also outline longitudinal survey data enhancements necessary for life-course research on childhood disability and its intersections.

Co-development of the ENVISAGE-Families programme for parents of children with disabilities: Reflections on a parent-researcher partnership.

INTRODUCTION: In childhood disability research, the involvement of families is essential for optimal outcomes for all participants. ENVISAGE (ENabling VISions And Growing Expectations)-Families is a programme comprising five online workshops for parents of children with neurodevelopmental disorders. The workshops aim to introduce parents to strengths-based perspectives on health and development. The research is based on an integrated Knowledge Translation (iKT) approach, in which knowledge users are involved throughout the research process. This article is co-authored by the ENVISAGE health service researchers (N = 9) and parent partners (N = 3) to describe the process through which we co-developed and implemented the workshops. METHODS: Collaborative auto-ethnography methods, based on a combination of interviews, qualitative surveys, and discussions held to complete the Guidance for Reporting Involvement of Patients and Public-2 tool, were used to describe the co-design process, the benefits gained, and lessons learned. FINDINGS: Parents (n = 118) were involved in developing and implementing the ENVISAGE workshops across the different phases, as partners, collaborators, or participants. Three parents were involved as investigators throughout. We identify seven key ingredients that we believe are necessary for a successful parent-researcher working relationship: (i) consistent communication; (ii) clear roles and expectations; (iii) onboarding and feedback; (iv) flexibility; (v) understanding; (vi) self-reflection; and (vii) funding. CONCLUSION: Patient and family engagement in research is a rapidly growing area of scholarship with new knowledge and tools added every year. As our team embarks on new collaborative studies, we incorporate this knowledge as well as the practical experience we gain from working together.

Managing the uncertainty associated with being a parent of a child with a long-term disability.

AIM: This article aims to explore the important theme of uncertainty and how this is experienced by parents of children with long-term disability or illness. It also aims to consider how health professionals might offer support to parents to manage their uncertainty without taking away their hope. BACKGROUND: Before taking up their role in a collaborative partnership with health professionals, parents first need to 'get used' to being a parent of a child with long-term disability. During this time, parents experience considerable uncertainty and employ different strategies to try to manage this. METHODS: The study was guided by a constructivist grounded theory methodology. This involved an iterative process of repeated cycles of data collection and analysis, which consisted of 12 semi-structured, in-depth interviews with 14 parents of children accessing paediatric services within a single National Health Service (NHS) Trust. RESULTS: The overarching theme of 'managing uncertainty' is presented with its constituent core categories/subthemes of 'minimizing concerns', 'getting an answer' and 'prioritizing the diagnosis'. CONCLUSIONS: This article presents and discusses a new understanding of how parents might be supported to manage the uncertainty associated with having a child with a long-term disability. It is suggested that support needs to move beyond the provision of accurate and timely information, to include measures/strategies that help parents to accept and make sense of their situation. Re-centring the child and reducing focus on diagnosis may help to allow space for continued hope.