Reflexive thematic analysis of a coaching-based, holistic approach to child development.

BACKGROUND: The F-words Life Wheel (FWLW) approaches child development by hybridizing a holistic model in the F-words for Child Development, and a coaching model in Occupational Performance Coaching, along with a life-flow approach in the Kawa model. We report the impact of the FWLW as experienced by families. METHODS: This was a qualitative interview study of parents of children with developmental needs and experts in child development using reflexive thematic analysis. RESULTS: From 13 interviews, we developed three themes: 1) overwhelming, 2) power rebalance and 3) connectedness. The overwhelming theme addresses how life with developmental needs is challenging, engaging with the health and disability system is difficult and the focus on deficits can lead to a sense of being overwhelmed. The power rebalance theme addresses the transition from professionals calling the shots to giving agency to the child and family. Holistic goal setting empowers parents and children to direct and prioritize therapy, and helps shift from a deficit-focused to a 'can-do' attitude. The connectedness theme addresses the linkages between psychological health, physical health, the extended family and the planet as a whole. CONCLUSIONS: The FWLW approach appears to be empowering and motivating for children and families.

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.

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'.

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.

Service Providers' Perspectives on Using the 'F-Words in Childhood Disability': An International Survey.

AIMS: The 'F-words in Childhood Disability' - operationalizing the International Classification of Functioning, Disability and Health Framework - have attracted great interest around the world. However, we have yet to learn how service providers (SPs) are using them. The aim of this study was to explore international SPs' attitudes toward and use of the 'F-words'. METHODS: A survey was administered, guided by the Theory of Planned Behavior, including Likert-scaled statements and an open-ended question. Ninety-one SPs working with children with impairments from 27 countries completed the survey. RESULTS: While 82 agreed the 'F-words' are good practice, only 60 are using the 'F-words'. Similarly, 52 SPs agreed that their colleagues approved of their use and 54 felt they were easy for families to use and understand. Respondents reported three main uses: (i) support of preexisting clinical approaches, (ii) direct integration into practice, and (iii) being taught in higher education. They also identified barriers to implementation (e.g., alternative clinical approaches and limited resources). CONCLUSIONS: Findings provide insights in how the 'F-words' are being used and the limitations thereof, which can inform future directions to support international implementation. With international SPs, we need to develop adapted dissemination tools to support uptake by individuals worldwide.

Exploring the international uptake of the "F-words in childhood disability": A citation analysis.

BACKGROUND: The "F-words in childhood disability" (function, family, fitness, fun, friends, and future) were introduced in a concept paper in 2012 entitled, "The F-words in childhood disability: I swear this is how we should think!". The "F-words" are grounded in, and aim to operationalize, the World Health Organization's (World Health Organization, 2001) International Classification of Functioning, Disability and Health (ICF) framework. A citation analysis was conducted to explore the extent of research uptake of the "F-words" concepts. METHODS: Three databases-Google Scholar, Wiley Online, and Web of Science-were searched from July 2012 to December 2018 for sources that cited the original F-words paper. Dates of publication and countries of first authors were extracted from all cited articles, and a taxonomy was developed to categorize the type of usage. RESULTS: The search yielded 157 sources from 26 countries, and the number of citations has continued to increase since the paper's publication. Sources were placed into three categories: cited/referenced (n = 109; i.e., the paper was simply cited), integrated/informed (n = 36; i.e., the F-words were stated within the text), and non-English (n = 12). Of the 36 integrated/informed sources, 34 (94.4%) applied the F-words to the ICF framework and five themes emerged with respect to the use of the F-words: (a) support of a holistic approach to childhood disability, (b) association of the F-words to physical activity and rehabilitation, (c) application and measurement of quality of life, (d) F-words research team-related papers, and (e) "other" category. CONCLUSION: This citation analysis shows that the F-words are mainly being used to operationalize the ICF, support a holistic approach to childhood disability, and inform physical activity and rehabilitation-based interventions. These perspectives will play an important role in informing the next steps with respect to moving the F-words into research and practice.

Perspectives in childhood-onset disabilities: integrating 21st-Century concepts to expand our horizons.

PURPOSE: A powerful aphorism states: "If I hadn't believed it, I wouldn't have seen it!" This challenging notion reminds us how strongly we are influenced by prevailing ideas, and how we interpret things according to current fashions and teachings. MATERIALS AND METHODS: In this paper we present and discuss contemporary perspectives concerning childhood-onset disability and the evolving nature of how people are thinking and acting. We illustrate these ideas by reminding readers of how we have all traditionally been trained and acculturated to think about many dimensions of neurodevelopmental disability ("What?"); reflect on the impact of these ways of thinking in terms of what we have conventionally "seen" and done ("So What?"); and contrast those traditions with contemporary concepts that we believe or know impact the field ("Now What?"). RESULTS: Many of the concepts discussed here will be familiar to readers. In taking this analytically critical perspective we aim to illustrate that by weaving these individual threads together we are able to create a coherent fabric that can serve children with childhood-onset NDD, their families, service providers, the community, and policy-makers. We do not purport to offer a comprehensive view of the whole field. CONCLUSIONS: We encourage readers to consider the integration of these new ways of thinking and acting in our still-evolving field of "childhood-onset disability".

21st-century thinking about childhood-onset neurodisability builds on WHO's ICF framework for health, expanding well beyond traditional primary biomedical foci on diagnosis and management and toward a focus on functioning and belonging.New emphases put family at the centre, attending to family voices and prioritizing family wellbeing as targets for intervention equal to a focus on the child.There is strong emerging evidence to support the value and impact of these broader approaches on overall family functioning and wellbeing.These developments are primarily conceptual rather than technical: they emphasize child and family development, parenting, promotion of functioning, and a life-course approach from the start of intervention.

Evaluation of daily and social participation of children with Cerebral Palsy across different age groups with a focus on the 'F'-words: Function, family, fitness, fun, friends and future.

BACKGROUND: The impact of disability differs across cultures. This study aimed to determine the predictors of participation in children with cerebral palsy (CP) in Turkey, based on the six F-words. METHODS: Cross-sectional study exploring participation profiles of 450 children with CP, aged between 2 and 18 years. Pediatric Evaluation of Disability Inventory (PEDI) evaluated functional skills, and Assessment of Life Habits (LIFE-H) version 3.0 assessed daily and social participation. Hierarchical linear regression models were done to determine the predictors of participation in daily activities (PDA) and social roles (PSR) in three age groups (2-4, 5-13 and 14-18 years) based on the 6 F-words (mobility of PEDI for 'fitness'; four classification systems and self-care of PEDI for 'functioning'; social functions of PEDI for 'friends'; demographic information by parents for 'family'; the recreation of LIFE-H for 'fun'; and different stages of development for 'future'). RESULTS: The most important predictors for total PDA by age group were: self-care (p = 0.012) of PEDI in 2-4 y; self-care (p = 0.001) and mobility (p = 0.005) of PEDI in 5-13 y; GMFCS (p = 0.006) and mobility (p = 0.002) of PEDI in 14-18 y. Significant predictors for PSR differed by age group: self-care (p = 0.001) of PEDI in 2-4 y; self-care (p = 0.023) and mobility (p = 0.006) of PEDI in 5-13 y; and GMFCS (p = 0.004) and MACS (p = 0.003) in 14-18 y. CONCLUSIONS: Six F-words of function and fitness focussed on self-care in younger children with an increasing emphasis on mobility and ability levels according to age. Therefore, rehabilitation for different aspects of the functional levels is needed to improve participation in life across the six F-words framework; plus take into consideration context, age-differences, family's expectations, life requirements, environmental needs, and cultural differences.

Assigning F-words as ingredients of interventions for children with cerebral palsy functioning at GMFCS IV and V: A scoping review protocol.

Introduction: Children with Cerebral Palsy (CP) functioning at Gross Motor Function Classification System (GMFCS) levels IV and V require "on time" identification and intervention. Interventions offered continue to be a challenge, in high-, but even more so in middle-, and low-income countries. Aim: To describe the methods developed to explore the ingredients of published studies on early interventions in young children with cerebral palsy (CP) at highest risk of being non-ambulant based on the "F-words for child development framework" and the design of a scoping review exploring these ingredients. Method: An operational procedure was developed through expert panels to identify ingredients of published interventions and related F-words. After sufficient agreement among researchers was reached, a scoping review was designed. The review is registered in the Open Science Framework database. The "Population, Concept and Context" framework was used. Population: young children (0-5 years with CP and at highest risk for being non-ambulant (GMFCS levels IV or V); Concept: non-surgical and non-pharmacological early intervention services measuring outcomes from any ICF domain; Context: studies published from 2001 to 2021. After duplicated screening and selection, data will be extracted and quality will be assessed with the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) and Mixed Methods Appraisal (MMAT) tools. Results: We present the protocol to identify the explicit (directly measured outcomes and respective ICF domains) and implicit (intervention features not explicitly intended or measured) ingredients. Conclusion: Findings will support the implementation of the F-words in interventions for young children with non-ambulant CP.

Developmental Disability: Families and Functioning in Child and Adolescence.

The WHO's International Classification of Functioning, Disability and Health (ICF) provides an integrated framework for health for everyone. Several aspects of this approach to health allow us to see people's lives in a richer and more holistic manner than has traditionally been the case based on diagnosis alone. These features include the positive language (emphasizing in particular "activity," "participation," and "personal factors"); the interconnections of the parts of this "dynamic system," in which every component can influence every other one; and the formal inclusion of "contextual factors"-personal and environmental-that are otherwise too easy to take for granted and then ignore. This paper addresses the "environmental" dimension of the ICF framework-specifically referring to "family" as the central environmental force in the lives of children and adolescents. The perspectives of the author are those of a developmental pediatrician, whose career has focused on children with conditions that challenge their development, and their families. Lessons learned from a lifetime of work-including teaching and research as well as clinical services-are offered. Particular emphases will be on (i) the importance of focusing on the family in a non-judgmental "family-centered" way; (ii) how conceptual ideas about child (and family) development and parenting are as important as technical approaches to intervention; and (iii) how the ICF framework "allows"-indeed encourages-such a focus to have value and importance equal to the best of biomedical interventions. Examples from current research will illustrate how these ideas can be implemented.

Parenting a Child with a Neurodevelopmental Disorder.

PURPOSE OF REVIEW: Traditional thinking and focus in 'childhood disability' have been on the child with the impairment - with the imperative to make the right diagnosis and find the right treatments. The implicit if not direct expectation was that interventions should aim to 'fix' the problems. Professionals have led the processes of investigation and management planning, with parents expected to 'comply' with professionals' recommendations. Much less attention has been paid to parents' perspectives or their wellbeing. RECENT FINDINGS: In the past two decades, we have seen a sea change in our conceptualizations of childhood disability. The WHO's framework for health (the International Classification of Functioning, Disability and Health (aka ICF)) and CanChild's 'F-words for Child Development' inform modern thinking and action. We now recognize the family as the unit of interest, with parents' voices an essential element of all aspects of management. The goals of intervention are built around the F-words ideas of function, family, fun, friendships, fitness and future. SUMMARY: There has been world-wide uptake of the F-words concepts, with increasing evidence of the impact of these ideas on parents and professionals alike. There are important implications of these developments on the structure, processes and content of services for children with neurodevelopmental disorders, their families and the services designed to support them.

Knowledge translation strategies to support service providers' implementation of the "F-words in Childhood Disability".

PURPOSE: Service providers are adopting the "F-words" in practice as a strengths-based approach to childhood disability. This study aimed to gain insight into service providers' uses of the "F-words", associated barriers, and knowledge translation strategies needed to support implementation. METHODS: Service providers were invited to participate in an interview after completing an online survey on their clinical implementation of the "F-words". Content analysis provided insight into use of the "F-words" and perceived barriers; and to identify knowledge translation strategies to facilitate implementation. RESULTS: Twenty-one service providers from nine countries participated in interviews. Applications of the "F-words" included its use as a conceptual framework, directly in practice, and in teaching/training. Barriers included conflicting attitudes, insufficient funding, language, and misalignment with organizational/government priorities. To support the adoption of the "F-words", participants recommended knowledge translation strategies including local opinion leaders, linkage and exchange, educational outreach and meetings, and distribution of educational materials. CONCLUSIONS: Understanding uses, barriers to use, and knowledge translation strategies will inform future directions to move the "F-words" into practice. A critical step in bridging the research-to-practice gap and encouraging more widespread adoption requires collaboration with service providers to tailor knowledge translation strategies to fit the local context.Implications for RehabilitationService providers around the world are interested in the ICF-based "F-words" and are adopting them in clinical practice to support a holistic, strengths-based approach to childhood disability.While there is considerable uptake of the "F-words", service providers have experienced barriers including conflicting attitudes of families and colleagues, insufficient funding, lack of translations, and misalignment with organizational and government priorities.To further support implementation and overcome perceived barriers, service providers recommended using four knowledge translation strategies: (i) local opinion leaders; (ii) linkage and exchange; (iii) educational outreach/meetings; and (iv) the distribution of educational materials.Service providers and researchers must partner together to tailor knowledge translation strategies to the local context in order to address the needs and priorities of service providers' specific settings and bridge the gap between research evidence and practice.

A Web-Based Knowledge Translation Resource for Families and Service Providers (The "F-Words" in Childhood Disability Knowledge Hub): Developmental and Pilot Evaluation Study.

BACKGROUND: The "F-words in Childhood Disability" (Function, Family, Fitness, Fun, Friends, and Future) are an adaptation and an attempt to operationalize the World Health Organization's (2001) International Classification of Functioning, Disability and Health (ICF) framework. Since the paper was published (November 2011), the "F-words" have attracted global attention (>12,000 downloads, January 2018). Internationally, people have adopted the "F-words" ideas, and many families and service providers have expressed a need for more information, tools, and resources on the "F-words". OBJECTIVE: This paper reports on the development and pilot evaluation of a Web-based knowledge translation (KT) resource, the "F-words" Knowledge Hub that was created to inform people about the "F-words" and to provide action-oriented tools to support the use of the "F-words" in practice. METHODS: An integrated research team of families and researchers at CanChild Centre for Childhood Disability Research collaborated to develop, implement, and evaluate the Knowledge Hub. A pilot study design was chosen to assess the usability and utility of the Web-based hub before implementing a larger evaluation study. Data were collected using a brief anonymous Web-based survey that included both closed-ended and open-ended questions, with the closed-ended responses being based on a five-point Likert-type scale. We used descriptive statistics and a summary of key themes to report findings. RESULTS: From August to November 2017, the Knowledge Hub received >6,800 unique visitors. In 1 month (November 2017), 87 people completed the survey, of whom 63 completed the full survey and 24 completed 1 or 2 sections. The respondents included 42 clinicians and 30 family members or individuals with a disability. The majority of people visited the Knowledge Hub 1-5 times (n=63) and spent up to 45 minutes exploring (n=61) before providing feedback. Overall, 66 people provided information on the perceived usefulness of the Knowledge Hub, of which 92% (61/66) found the Knowledge Hub user-friendly and stated that they enjoyed exploring the hub, and a majority (n=52) reported that the Knowledge Hub would influence what they did when working with others. From the open-ended responses (n=48), the "F-words" videos (n=21) and the "F-words" tools (n=15) were rated as the best features on the Knowledge Hub. CONCLUSIONS: The "F-words" Knowledge Hub is an evidence-informed Web-based KT resource that was useful for respondents, most of whom were seen as "early adopters" of the "F-words" concepts. Based on the findings, minor changes are to be made to improve the Knowledge Hub before completing a larger evaluation study on the impact at the family, clinician, and organizational levels with a wider group of users. Our hope is that the "F-words" Knowledge Hub will become a go-to resource for knowledge sharing and exchange for families and service providers.