Clinical application and feasibility of utilizing the PEDI-CAT to assess activity and participation among children receiving physical therapy incorporating hippotherapy.

BACKGROUND: Hippotherapy (HPOT) is a physical therapy (PT) treatment tool using equine movement to improve mobility for children with movement impairments. Although research suggests HPOT improves body structure and function, there is limited evidence regarding its impact on activity and participation outcomes in a clinical setting. The Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT) may be useful in HPOT settings to highlight changes in activity and participation. PURPOSE: 1) Evaluate the PEDI-CAT's sensitivity to changes in activity and participation among children receiving PT using HPOT; 2) determine feasibility of administering the PEDI-CAT in a HPOT setting; and 3) examine how PEDI-CAT scores influence clinical decision-making. METHODS: Participants (N = 34) were children who attended weekly PT using HPOT for 6 months. The PEDI-CAT was completed for all participants by a parent or caregiver at initial treatment (T1) and 6 months later (T2). A linear mixed effects model was used to evaluate changes in scores over time. Team meetings occurred monthly to discuss how PEDI-CAT scores impacted treatment. RESULTS: There were significant improvements across 3 PEDI-CAT domains between T1 and T2 for all children with small effect sizes and nonsignificant changes noted within two diagnostic subgroups with small-to-medium effect sizes. The PEDI-CAT was completed by all participants without interrupting treatment flow. PEDI-CAT score reports enriched therapist-client conversations increasing shared decision-making. CONCLUSION: PTs who treat children using HPOT may feasibly use the PEDI-CAT to assess changes in activity level outcomes and to assist clinical decision-making.

Disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across health, social care and education

This guideline covers support for disabled children and young people with severe complex needs, from birth to 25 years. It aims to encourage education, health and social care services to work together and provide more coordinated support to children and young people, and their families and carers.

Telehealth in Pediatric Rehabilitation.

Pediatric rehabilitation focuses on optimizing function and quality of life of children through a holistic and transdisciplinary patient-centered team approach. This article describes the incorporation of telehealth in pediatric rehabilitation and its growth over the past decade. It also reviews the experience of practitioners using telehealth by necessity during the 2020 COVID-19 pandemic. Evidence suggests many applications where telehealth can appropriately substitute for traditional in-person visits, and there are many potential applications of telehealth to be explored as a means to enhance connectivity of the interdisciplinary rehabilitation team and the outreach to patients in remote and underserved areas.

Exploração qualitativa do itinerário terapêutico de crianças com deficiência física na Nigéria usando análise de conteúdo temática / Exploración cualitativa del itinerario terapéutico de niños con discapacidades físicas en Nigeria utilizando análisis de contenido temático / Qualitative exploration into therapeutic itinerary of children with physical disabilities in Nigeria using thematic content analysis

Resumo Objetivo Explorar o itinerário terapêutico na busca de cuidados para crianças com deficiências físicas pelos cuidadores. Métodos Um plano qualitativo descritivo que recrutou nove cuidadores de crianças com deficiência física, com consentimento, que frequentavam um Hospital Universitário Nigeriano. Foi utilizado um guia de entrevista semi-estruturado para coletar dados sobre o itinerário terapêutico, que foi definido como os caminhos percorridos pelos indivíduos para resolver o seu problema de saúde. As entrevistas foram gravadas em áudio e transcritas literalmente. Os dados foram analisados utilizando a análise do conteúdo temático. Resultados os temas emergentes revelaram que os cuidadores iniciaram o itinerário terapêutico para os respetivos filhos após a observação de quaisquer deficiências que vão para além de doenças casuais. A falta de capacidade dos hospitais privados, que servem como ponto inicial de entrada na busca de cuidados, encorajou a procura por cuidados nos hospitais públicos, lares espirituais, e clínicas tradicionais. A entrada na fisioterapia dependia de auto-referências, referências por parentes e médicos. Cuidar de crianças com deficiência física prejudicou de modo significativo a vida social, as finanças, o trabalho do cuidador; e expectativas não alcançadas de que a criança melhorasse o mais cedo possível encorajaram um pluralismo contínuo. Conclusão e implicações para a prática O fato de ter crianças com deficiências e de ter havido atraso nos progressos levou os cuidadores a práticas múltiplas e complexas na busca de cuidados de saúde.

Resumen Objetivo Explorar el itinerario terapéutico para la búsqueda de cuidado de niños con discapacidad física por parte de los cuidadores. Métodos Un diseño cualitativo descriptivo que recluta a nueve cuidadores de niños con discapacidades físicas que asisten a un hospital universitario de Nigeria. Se utilizó una guía de entrevista semiestructurada para recopilar datos sobre el itinerario terapéutico que se definió como los caminos que recorren los individuos para abordar su problema de salud. Las entrevistas fueron grabadas en audio y transcritas textualmente. Los datos se analizaron mediante análisis de contenido temático. Resultados Los temas emergentes revelaron que los cuidadores iniciaron un itinerario terapéutico para sus hijos al observar cualquier impedimento que vaya más allá de las enfermedades casuales. La falta de capacidad en los hospitales privados, que sirve como punto inicial de entrada en la búsqueda de atención, fomenta la vacilación en los hospitales públicos, hogares espirituales y clínicas tradicionales. La entrada en fisioterapia dependía de las autorremisiones, las derivaciones de familiares y médicos. El cuidado de niños con discapacidad física afectó significativamente la vida social, las finanzas y el trabajo del cuidador; y las expectativas no satisfechas de que un niño se recupere lo antes posible fomentaron el pluralismo continuo. Conclusión e implicaciones para la práctica El hecho de que los niños presentaran discapacidades e hitos retrasados condujo a múltiples prácticas complejas de búsqueda de atención médica entre los cuidadores. Por lo tanto, estos cuidadores se vuelven médicos pluralistas y encubiertamente no se adhieren a las prescripciones de tratamiento hospitalario.

Abstract Objective To explore the therapeutic itinerary for seeking care for children with physical disabilities by caregivers. Methods A descriptive qualitative design recruiting nine consenting caregivers of children with physical disabilities attending a Nigerian Teaching Hospital. A semi-structured interview guide was used to collect data on therapeutic itinerary which was defined as the paths taken by individuals to address their health problem. Interviews were audio-recorded and transcribed verbatim. Data was analyzed using thematic content analysis. Results Emerging themes revealed that caregivers commenced therapeutic itinerary for their children upon observation of any impairments that go beyond casual illnesses. Lack of capacity in private hospitals, which serves as initial point of entry into care seeking, encourage vacillation into public hospitals, spiritual homes, and traditional clinics. Entry into physiotherapy was dependent on self-referrals, referrals by relatives, and physicians. Caring for children with physical disability significantly affected caregiver's social life, finances, work; and unmet expectations for a child to get well as soon as possible encouraged continuous pluralism. Conclusion and implications for the practice Having children presenting with impairments and delayed milestones led to complex multiple health care seeking practices among caregivers. Thus, these caregivers become medical pluralists and covertly non-adherent to hospital treatment prescriptions.

Complementary and Alternative Medicine Use in Children with a Developmental Disability and Co-occurring Medical Conditions.

OBJECTIVE: The primary aim of this study was to evaluate differences in the prevalence of complementary and alternative medicine (CAM) usage among children with and without developmental disabilities (DD). Secondarily, the association between CAM usage and comorbid chronic medical conditions was explored among children with DD. DESIGN: Data come from the 2012 Child Complementary and Alternative Medicine Supplement of the National Health Interview Survey, a nationally representative sample of children in the United States between the ages of 4 and 17 (n = 10,218).Main outcome measures Multiple logistical regression models provided insight into the relationships between parent-report CAM usage, DD, and chronic medical conditions. RESULTS: Children with developmental disabilities were more likely to use CAMs compared to their typically developing peers (21% vs 16%). Children with DDs and comorbid chronic medical conditions used CAMs at even higher rates (23% vs 18%). CONCLUSIONS: Results indicated that children with DD, especially those with a co-occurring chronic medical condition, use CAMs more often that typically developing children. Given scarcity of information on safety and effectiveness, clinical providers need to be alert to which children may be more likely to be exposed to CAMs. Communication between parents and providers needs to include discussion of CAM treatments.

Dog-Assisted Therapy in Neurorehabilitation of Children with Severe Neurological Impairment: An Explorative Study.

BACKGROUND: Dog-assisted therapy (DAT) is increasingly applied in neurorehabilitation of patients with severe neurological impairments. To date, there are only anecdotal reports investigating its effects. OBJECTIVES: This study was aimed to evaluate the potential of DAT in pediatric inpatient neurorehabilitation for severely neurologically impaired children and adolescents, to identify characteristics of patients receiving this therapy, characteristics of the therapy sessions, and to evaluate feasibility and extent of goal achievement. METHODS: We retrospectively analyzed 850 DAT sessions performed between 2010 and 2017 at an inpatient neurorehabilitation center. The dataset included 196 children and adolescents (Md = 5.50, 0.58-20.33 years) suffering from severe neurological impairments (disorders of consciousness in 37 patients) of various etiologies. We extracted information regarding patient and session characteristics, analyzed the predefined goals with content analysis, and examined to what extent the goals were met during DAT. Data were analyzed using descriptive statistics. RESULTS: Patients received an average of 4.34 therapy sessions. A total of 247 of 392 predefined goals (63%) were reached during DAT. The most frequently achieved goal was "enhancing fun" (83%), followed by "establishing contact and communication" (81%), and "relaxation" (71%). Only one critical incident regarding the dogs' safety occurred. CONCLUSION: DAT is a feasible approach and appears to facilitate emotional, social, and psychological goals in children and adolescents with severe neurological impairment.

Mental Health Care in Pediatric Rehabilitation Hospitals: A Biopsychosocial, Collaborative, and Agency-based Service Integration Approach.

Background: Canadian hospitals are not currently prepared to meet the psychosocial needs of children with disabilities as services are rooted in a biomedical care model. Objective: To describe a practical and holistic framework for pediatric rehabilitation hospitals to meet the health care needs of children and their families. Method: An environmental scan was conducted of best practice guidelines, policy documents, and models of integrated mental health care. Recommendations from clinical guidelines and national strategy documents were incorporated to develop a service integration approach. Results: An agency-based approach was used to develop a two-phase biopsychosocial framework. In framework Phase I, reactive care is provided to mental health concerns. In Phase II, there is a shift to proactive care and mental health wellbeing. Conclusions: Emphasis is placed on capacity building of clinical staff into best practices for mental health care. Implementation needs and consideration for uptake of the framework are also discussed.

Mothers supporting play as a choice for children with disabilities within a culturally and linguistically diverse community.

Background: Play is a right for children; an essential childhood occupation influenced by their family environment. Despite increasing recognition of unstructured outdoor play benefits, children with disabilities experience limited play opportunities.Aim: To apply a capabilities approach lens to understand outdoor play decision-making by mothers of children with disabilities within a culturally and linguistically diverse community.Materials and methods: Data collection for this case study involved semi-structured interviews with five mothers of primary school-aged children with disabilities and a week-long survey that profiled their children's outdoor play. Analysis was thematic and involved identifying barriers and opportunities at each ecocultural layer, aggregating strategies families used to address the barriers, and understanding their overall play decision-making.Findings: Mothers considered the child's interests and abilities, valued play as both a means and ends, planned for play, and facilitated in the moment as required. Multiple factors influenced mothers' outdoor play decisions. Mothers' values were child-centred, positively influencing the child's play opportunities.Conclusion and significance: This study's capabilities lens could inform professions such as occupational therapy to support families of children with disabilities from culturally diverse communities to advocate for play opportunities across settings.

Interest of children with unilateral spastic cerebral palsy in bimanual daily activities.

Background: Many bimanual activities are challenging for children with unilateral spastic cerebral palsy (USCP).Aims: To investigate hand use by children with USCP in daily activities of their interest.Material e methods: Sample included twenty children with USCP, aged 8 to 14 years old. Participants identified bimanual activities of their interest and no interest. Children's performance on these activities were videotaped. Videos were coded according to the affected extremity's forms and effectiveness of use, caregiver provision and types of assistance, and child's satisfaction. The relative proportions of each parameter were compared using the signed-rank test, considering the time spent in activities of interest and no interest.Results: We analyzed 116 activities. We found effects of interest in children's satisfaction (p = 0.003) and on the type of assistance (p = 0.03). Specifically, children demonstrated longer periods of satisfaction performing activities of their interest and caregiver physical assistance was provided for longer periods of time in activities of no interest. There were no effects on the other parameters.Conclusions: A model that illustrates the impact of a child's interest on the performance of daily bimanual activities is presented, grounded in our results and in the literature.

'I Didn't Know What to Expect': Describing Parents' Expectations in Children's Rehabilitation Services.

Aims: The aim of this paper is to provide a holistic description of the nature, formation and impact of parents' therapy related expectations.Methods: This qualitative descriptive study drew from initial and follow up interviews with 20 parents of children ≤ 6 years who had a developmental disability or delay and used therapy services at a children's treatment center in Ontario, Canada. Conventional content analysis was used to inductively generate themes and investigator triangulation was completed.Results: Parent's child related expectations focused on whether the child would receive a diagnosis and what they might achieve. Parents held expectations about the availability of service and how it would be offered. Parents' expectations of service providers included their knowledge, skills, relationships and communication with the children and parents. Parents held expectations of themselves related to attendance and roles in therapy sessions and home practice. These expectations are described according to how they are shaped and changed them over time. The impact of matched/mismatched expectations is explored.Conclusion: Service providers can improve family-centred care and collaboration with parents by explicitly discussing parents' expectations when beginning, and throughout, therapy. Parent satisfaction and therapy engagement may improve if parents and service providers negotiate and agree upon expectations.

Vocal training technology for children with delayed psychoverbal development

The relevance of this research is based on the fact that delayed psychoverbal development is very common is very common in modern children. The problems caused by delayed psychoverbal development accompany many pathologies connected with the development of the nervous system. Therefore, the issues of providing help and training to such children are becoming increasingly relevant both in Russian and foreign pedagogy. The article looks at some aspects of the vocal training technology used in work with children who have delays in psychoverbal development in order to improve the level of their cognitive and communicative skills, develop their thinking, speech, memory and empathy and overcome psychological difficulties. Research methods include theoretical works by Russian psychologists and a pedagogical experiment in vocal training of children with health problems.

The experience of carers of children with cerebral palsy living in rural areas of Ghana who have received no rehabilitation services: A qualitative study.

AIM: This study aims to explore the experiences of carers of children with cerebral palsy living in rural areas of Ghana who have received no rehabilitation services. BACKGROUND: Cerebral palsy is the most common chronic disability from childhood, which needs lifelong rehabilitation. Most of the population living in rural communities in Ghana have virtually no form of rehabilitation services for their chronic disabling conditions. Caring for children with disability are known to be challenging especially when coupled with environmental challenges in rural communities. RESULTS: Purposive and snowball techniques were used to recruit 12 carers, age 22 to 68 years, of children with cerebral palsy aged 7 to 15 years. Two main themes, developing personal beliefs to support the caregiving role and the demands that shape the experience of caring, emerged from six subthemes and 25 theme clusters of the narratives of the carers. The essential structure of the phenomenon demonstrated the complex interaction of personal and environmental factors in harmony with the actual demands to influence the experiences of participants positively or negatively. Positively, carers achieved coping, committed to caring, hoped for the future, and accepted the condition. However, negatively, carers described the triggering factors of feeling of despair and sorrow as frustration and lack of understanding of the condition, felt stigmatized, and perceived the child was going through pain and suffering. CONCLUSIONS: Carers derived strength from their religious and spiritual beliefs to balance the demands of caregiving. Findings could be used as basis for developing interventions to support carers and inform new strategies for rehabilitation service and sensitization of community members about inclusion of children with disabilities.

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.

Parents' perception of health care services for girls with Rett syndrome.

BACKGROUND: Rett syndrome (RTT) is a severe neurodevelopmental disorder, implying impairment and disability across several domains. METHOD: We investigated parents' perception of the caregiving process in a sample of 55 mothers and fathers of girls with RTT using the MPOC-20 questionnaire. The association of parents' satisfaction with clinical variables has also been explored. RESULTS: We obtained intermediate levels of satisfaction on the MPOC-20 Coordinated and Comprehensive Care and Respectful and Supportive Care scales. The performance was lower on the scales Providing General Information and Providing Specific Information. Mothers' assessment was not associated with clinical variables such as walking disability, presence of scoliosis, or epilepsy. For children with greater degree of walking impairment, fathers expressed the need of having more information available. CONCLUSIONS: Although parents seemed satisfied of the caregiving process, clinicians should put more emphasis on their need of receiving general and specific information on RTT along the entire rehabilitation program.

Active exercise interventions improve gross motor function of ambulant/semi-ambulant children with cerebral palsy: a systematic review.

PURPOSE: Evaluate effectiveness of active exercise interventions for improving gross motor activity/participation of school-aged, ambulant/semi-ambulant children with cerebral palsy (CP). METHOD: A systematic review was conducted following PRISMA guidelines. Five databases were searched for papers including school-aged children with CP, participating in active, exercise interventions with gross motor outcomes measured at the Activity/Participation level. Interventions with previous systematic reviews were excluded (e.g. hippotherapy). Evidence Level and conduct were examined by two raters. RESULTS: Seven interventions (34 studies) met criteria. All studies reported on gross motor function, however, a limited number investigated participation outcomes. Strong positive evidence was available for Gross Motor Activity Training (n= 6, Evidence Level II-IV), and Gross Motor Activity Training with progressive resistance exercise plus additional physiotherapy (n = 3, all Evidence Level II). Moderate positive evidence exists for Gross Motor Activity Training plus additional physiotherapy (n = 2, all Evidence Level II) and Physical Fitness Training (n = 4, Evidence Level II-V). Weak positive evidence was available for Modified Sport (n = 3, Evidence Level IV-V) and Non-Immersive Virtual Reality (n = 12, Evidence Level II-V). There was strong evidence against Gross Motor Activity Training plus progressive resistance exercise without additional physiotherapy (n = 4, all Evidence Level II). INTERPRETATION: Active, performance-focused exercise with variable practice opportunities improves gross motor function in ambulant/semi-ambulant children with CP. Implications for rehabilitation Active exercise interventions improve gross motor function of ambulant/semi-ambulant children with cerebral palsy. Gross Motor Activity Training is the most common and effective intervention. Practice variability is essential to improve gross motor function. Participation was rarely measured and requires further research, particularly in interventions that embed real-world participation opportunities like Modified Sport.

Relationship Between Coping Strategies, Religious Attitude, and Optimism of Mothers of Children With Cancer.

INTRODUCTION: The purpose of this study was to examine the relationship between coping strategies, religious attitude, and optimism of mothers of children with cancer. METHOD: The sample was 97 mothers of children with cancer. To collect data, the Coping Strategy Questionnaire, Religious Attitude Scale, and Life Orientation were used. RESULTS: There were positive correlations between the total score of Coping Strategy Questionnaire and emotional scores of Religious Attitude Scale ( r = 0.170, p = .04). The correlation relationship between mothers' coping, religious tendencies, and optimism tendencies was not significant ( p > .05). There were also positive correlations between Coping Strategy Questionnaire Social Support Seeking subscale and the total scores of Religious Attitude Scale ( r = 0.189, p = .03) and Life Orientation Test ( r = 0.183, p = .03). DISCUSSION: Mothers with a higher religious attitude had bettter social support and were more optimistic. These results will contribute to understanding the influence of religion in different cultures.

Verbal learning and memory in prelingually deaf children with cochlear implants.

OBJECTIVE: Deaf children with cochlear implants (CIs) show poorer verbal working memory compared to normal-hearing (NH) peers, but little is known about their verbal learning and memory (VLM) processes involving multi-trial free recall. DESIGN: Children with CIs were compared to NH peers using the California Verbal Learning Test for Children (CVLT-C). STUDY SAMPLE: Participants were 21 deaf (before age 6 months) children (6-16 years old) implanted prior to age 3 years, and 21 age-IQ matched NH peers. RESULTS: Results revealed no differences between groups in number of words recalled. However, CI users showed a pattern of increasing use of serial clustering strategies across learning trials, whereas NH peers decreased their use of serial clustering strategies. In the CI sample (but not in the NH sample), verbal working memory test scores were related to resistance to the build-up of proactive interference, and sentence recognition was associated with performance on the first exposure to the word list and to the use of recency recall strategies. CONCLUSIONS: Children with CIs showed robust evidence of VLM comparable to NH peers. However, their VLM processing (especially recency and proactive interference) was related to speech perception outcomes and verbal WM in different ways from NH peers.

There is no place like @home!: The value of home consultations in paediatric rehabilitation.

BACKGROUND: Family-centred services (FCS) is widely regarded as the best practice approach in early interventions. Creating a therapeutic environment, which also stimulates collaboration between parents and service professionals, is a way to conform to the principles of FCS. The present paper describes the project entitled @home, involving the implementation of home consultations by a specialized team working with children aged 0-5 years at our rehabilitation centre in the Netherlands. The objectives of this article are to (a) describe the development and implementation of home consultations as part of regular care and (b) share the experiences of parents and service providers with home consultations. METHOD: The implementation process was divided into 3 steps: (1) interviewing experts, (2) adjusting current rehabilitation trajectories, and (3) service providers offering consultations to children at home. The experiences with the home consultations were immediately incorporated in the system, making the implementation an iterative process. RESULTS: In 82% of the 133 home conducted consultations, the service professionals reported that it was more valuable to offer home consultations than seeing the child at the rehabilitation centre. The semistructured interviews revealed that parents and service providers found that they received and provided more tailored advice, perceived a more equal partnership between service professionals and parents, and reported that the home consultations provided a good natural therapeutic environment where a child can be itself and where the child performs best. CONCLUSION: By using the @home system based on the 3 service models, home consultations are now part of the regular paediatric rehabilitation system at our rehabilitation centre.

Reflections on Health Promotion and Disability in Low and Middle-Income Countries: Case Study of Parent-Support Programmes for Children with Congenital Zika Syndrome.

Universal health coverage (UHC) has been adopted by many countries as a national target for 2030. People with disabilities need to be included within efforts towards UHC, as they are a large group making up 15% of the world's population and are more vulnerable to poor health. UHC focuses both on covering the whole population as well as providing all the services needed and must include an emphasis on health promotion, as well as disease treatment and cure. Health promotion often focusses on tackling individual behaviours, such as encouraging exercise or good nutrition. However, these activities are insufficient to improve health without additional efforts to address poverty and inequality, which are the underlying drivers of poor health. In this article, we identify common challenges, opportunities and examples for health promotion for people with disabilities, looking at both individual behaviour change as well as addressing the drivers of poor health. We present a case study of a carer support programme for parents of children with Congenital Zika Syndrome in Brazil as an example of a holistic programme for health promotion. This programme operates both through improving skills of caregivers to address the health needs of their child and tackling poverty and exclusion.