Changing Directions and Expanding Horizons: Moving towards More Inclusive Healthcare for Parents of Children with Developmental Disabilities.

Family-centred service (FCS) acknowledges the importance of family engagement in therapeutic processes and focuses on the needs of all family members. This way of thinking and practicing is becoming increasingly recognized as an optimal care delivery model for families of children with developmental disabilities (DDs). However, in most places, disability services are oftentimes 'child-centric', wherein family members are seen only as partners in therapy or care delivery, while their own needs are not addressed. This arises from the lack of awareness of complex and highly individual family needs by professionals with whom they interact, but also from a significant lack of service infrastructure oriented towards parent-specific needs in existing service delivery models. This concept paper highlights the known challenges associated with parenting a child with a DD and discusses the intersectionality of factors impacting parental health and well-being, with a goal of promoting more equitable, holistic, and inclusive healthcare for all family members of children with DDs.

Fisioterapia em crianças com paralisia cerebral no Brasil: uma revisão de escopo.

OBJETIVO: Identificar e avaliar os estudos publicados sobre fisioterapia em crianças e adolescentes brasileiros com paralisia cerebral (PC), usando o modelo da Classificação Internacional de Funcionalidade, Incapacidade e Saúde (CIF). MÉTODO: Artigos em inglês e português publicados até outubro de 2020, sem restrição de data, foram pesquisados em diferentes bases bibliográficas. Foram extraídos dados sobre as características do estudo, métricas do periódico, características da amostra, domínios da CIF explorados a partir dos componentes e desfechos das intervenções. Para caracterizar as evidências, os estudos foram classificados de acordo com os níveis de evidência do Centro de Medicina Baseada em Evidência de Oxford. RESULTADOS: Noventa e quatro estudos foram incluídos. Crianças com PC espástica e com menores limitações nas habilidades motoras grossas foram as mais reportadas; 67% dos estudos apresentaram baixos níveis de evidência e foram publicados em periódicos sem fator de impacto. As três intervenções mais frequentes foram o conceito neuroevolutivo Bobath/terapia do neurodesenvolvimento, a terapia com vestes e a estimulação transcraniana por corrente contínua. Os componentes das intervenções exploraram estruturas e funções do corpo (73,4%), atividade (59,6%) e ambiente (2,1%). Entretanto não exploraram a participação (0%). Os desfechos investigados abordaram atividade (79,8%), estruturas e funções do corpo (67,0%), participação (1%) e ambiente (0%). INTERPRETAÇÃO: Os estudos de intervenções fisioterapêuticas para crianças e adolescentes brasileiros com PC, apresentam maior foco em minimizar deficiências em estruturas e funções do corpo e limitações de atividades. São necessários mais estudos, com melhor nível de evidência e foco ampliado para a participação e os fatores ambientais.

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.

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.

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.

Using the ICF in transition research and practice? Lessons from a scoping review.

BACKGROUND: The International Classification of Functioning, Disability and Health (ICF) and subsequent ICF-CY (child and youth version) recognize the importance of personal and environmental factors in facilitating holistic transition planning and service delivery for youth with chronic health conditions (YCHC). AIMS: The objective of this scoping review is to investigate the degree to which the ICF and ICF-CY have been used in transition research and practice since its initial publication. METHODS: Arksey and O'Malley's five-stage methodological framework guided the scoping review using the following databases: AMED, CINAHL, EMBASE, HealthSTAR, MEDLINE, and PsycINFO. Keywords included: 'ICF', 'ICF-CY', and 'transition', which were adapted to each database. RESULTS: 25 articles met final inclusion. Two key themes emerged regarding use of the ICF: 1) the ICF enhances transdisciplinary processes to inform transition planning and interventions; and 2) the ICF facilitates comprehensive and developmentally appropriate transition services over a youth's lifecourse. The strengths and limitations of the ICF in guiding the planning and delivery of transition services are discussed. Some limitations include the large number of items inherent within the ICF and a lack of clarity between the components of activity and participation. CONCLUSION: Key recommendations include: i) further explanation and development of items for quality of life and well-being, personal factors, and psychological issues; and ii) additional research to advance knowledge towards developing empirically- based evidence for the application of the ICF in clinical practice to facilitate transition.

Glycerin enemas and suppositories in premature infants: a meta-analysis.

BACKGROUND AND OBJECTIVE: Premature infants are often given glycerin enemas or suppositories to facilitate meconium evacuation and transition to enteral feeding. The purpose of this study was to assess the available evidence for this treatment strategy. METHODS: We conducted a systematic search of Medline, Embase, Central, and trial registries for randomized controlled trials of premature infants treated with glycerin enemas or suppositories. Data were extracted in duplicate and meta-analyzed using a random effects model. RESULTS: We identified 185 premature infants treated prophylactically with glycerin enemas in one trial (n = 81) and suppositories in two other trials (n = 104). All infants were less than 32 weeks gestation and had no congenital malformations. Treatment was associated with earlier initiation of stooling in one trial (2 vs 4 days, P = .02) and a trend towards earlier meconium evacuation in another (6.5 vs 9 days, P = .11). Meta-analysis demonstrated no effect on transition to enteral feeding (0.7 days faster, P = .43) or mortality (P = 0.50). There were no reports of rectal bleeding or perforation but there was a trend towards increased risk of necrotizing enterocolitis with glycerin enemas or suppositories (risk ratio = 2.72, P = .13). These three trials are underpowered and affected by one or more major methodological issues. As a result, the quality of evidence is low to very low. Three other trials are underway. CONCLUSIONS: The evidence for the use glycerin enemas or suppositories in premature infants in inconclusive. Meta-analyzed data suggest that treatment may be associated with increased risk of necrotizing enterocolitis. Careful monitoring of ongoing trials is required.

The ICF model of functioning and disability: incorporating quality of life and human development.

OBJECTIVE: Since its 2001 publication, a number of issues have been raised about the ICF. The World Health Organization anticipated the ICF would undergo a continuous process of revision. This paper adds to this process. METHOD: This article describes how the ICF framework shares a number of tenets with a systems perspective. An argument is built for why the ICF model of functioning and disability should be expanded to include the concepts of quality of life and human development. A modified model is presented that depicts a person's life quality and his/her potential for development as the outcomes and processes that arise from the interconnected, ever-changing influences of health, functioning and contextual factors. CONCLUSIONS: A modified ICF model based on a systems perspective depicts a holistic view that acknowledges health, functioning, life quality and development are intertwined and are essential concepts to consider in the lives of all people.

A home for medically complex children: the role of hospital programs.

The medical home is a conceptual model of continuous and comprehensive care provision that is associated with improved outcomes for children with special healthcare needs. Most applications of the medical home have focused on improving primary care services. Despite concerted efforts to apply the medical home concept to the care of children with special healthcare needs, many barriers to its implementation still exist, in particular, for the subset of children with special healthcare needs who are medically complex. Applying the medical home concept to hospital-based care coordination may benefit both children with complex conditions and their families, as well as the community-based providers.

Effective rehabilitation for children and adolescents with brain injury: evaluating and disseminating the evidence.

OBJECTIVE: To develop and evaluate literature reviews of the effectiveness of rehabilitation interventions for children with brain injury. DESIGN: We wrote 6 research summaries, which were evaluated by study participants. SETTING: Community. PARTICIPANTS: A convenience sample that included 18 parents of children with brain injury, 18 service providers, and 12 insurance industry representatives. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Questionnaire designed for the evaluation of printed material. RESULTS: Few articles were found that focused on evaluation of rehabilitation interventions for children with brain injury. Study participants were representative of a broad range of educational and professional backgrounds. Before reading the research summaries, service providers reported greater familiarity with the topics than did parents and insurance representatives. Despite this finding, there were no significant between-group differences in the format, content, and impact ratings provided by the 3 participant groups. CONCLUSIONS: Research summaries written in a clear, straightforward manner are appropriate for people with different educational and professional backgrounds. Further research into the effectiveness of rehabilitation interventions is needed to support informed decision-making that results in the best outcomes for children with brain injury.

Controversial treatment of spasticity: exploring alternative therapies for motor function in children with cerebral palsy.

The treatment and management of children with cerebral palsy is an ever-evolving story. In the past 20 years, a number of exciting innovations in treatment have expanded the opportunities to help children. At the same time, the field has experienced a remarkable proliferation of "alternative" therapies-approaches based on ideas about the biologic basis of neurodevelopmental disabilities and their management that differ considerably from conventional thinking in Western medicine. Professionals working with children with cerebral palsy and their families are frequently asked for an opinion about or even endorsement of these new and "promising" approaches to therapy. These can be very difficult to provide when the evidence is limited, peer-reviewed reports are scarce, and the primary source of information is the World Wide Web. The purposes of this article are to discuss briefly why it can be difficult to ascertain whether any treatment--conventional or alternative--does more harm than good, and to consider what rules of evidence can be applied to make a sound judgment about a new treatment. The article then discusses several current controversial alternative therapies, reviewing the available literature and offering a critical appraisal of each. Topics addressed include hyperbaric oxygen therapy, conductive education, the Adeli suit, and therapeutic (subthreshold) electrical stimulation because these approaches have been applied to children with cerebral palsy.

Health-related quality of life in childhood epilepsy: moving beyond 'seizure control with minimal adverse effects'.

Childhood epilepsy is one of the most important and prevalent neurological conditions in the developing years. Persons with childhood onset epilepsy are at a high risk for poor psychosocial outcomes, even without experiencing co-morbidities. The goal of management of children with epilepsy should be to enable the child and the family to lead a life as free as possible from the medical and psychosocial complications of epilepsy. This comprehensive care needs to go beyond simply trying to control seizures with minimal adverse drug reactions. Seizure frequency and severity is only one important outcome variable. Other factors such as social, psychological, behavioural, educational, and cultural dimensions of their lives affect children with epilepsy, their families and their close social networks. A number of epilepsy-specific health-related quality of life (HRQL) scales for children have been developed with the aim to include and measure accurately the impact and burden of epilepsy. Their target populations, details of the origin of the items, and psychometric properties vary significantly. Their strengths and weaknesses will be identified more clearly through their continued use in the clinical setting and in research studies. Only a few studies to date have utilized these or generic HRQL measures to assess the HRQL of specific populations with epilepsy. Future research needs to develop theory driven models of HRQL and identify measurable factors that have important correlations with outcomes. Since biomedical variables like seizure frequency and severity have only moderate correlations with HRQL, other independent factors including the child's resilience, co-morbid conditions, parental well-being, family factors and societal/cultural variables may play a major role. We also need to learn what encompasses comprehensive patient care, define the goals of management and evaluate the impact of different interventions. Future studies need to include the children's own perspectives of their HRQL in addition to parental reports. Finally, clinicians need to familiarize themselves with outcome measures, be able to evaluate them, and use them routinely in their day-to-day practice.