Research on Children With Cerebral Palsy in Low- and Middle-Income Countries.

The purpose of this special communication is to present ideas and thoughts from a symposium at the 75th Annual Meeting of the American Academy for Cerebral Palsy and Developmental Medicine. These included perspectives and lessons from 3 previously published review studies regarding cerebral palsy (CP) research in Brazil, India, and African countries, which explored the literature through the lens of the World Health Organization's International Classification of Functioning, Disability and Health (ICF) framework. Using this common lens, first we present the main findings of each of these articles, as well as the similarities and differences in CP research across these low- and middle-income countries (LMICs). Second, considering current evidence, lessons from other LMICs and based on our experiences, we raise recommendations of critical areas to be addressed such as ICF framework implementation and best evidence practice on CP, focusing on prevention, early diagnosis, and intervention (see Supplemental Digital Abstract, available at: http://links.lww.com/PPT/A413 ).

Treatment and re/habilitation of children with cerebral palsy in India: a scoping review.

AIM: To describe the nature and extent of the literature addressing the medical and its re/habilitative management of cerebral palsy (CP) in India. METHOD: Online worldwide scholarly databases, research hosting directories, Indian publishing houses, and grey literature were used to identify papers published between 2005 and 2016. We retrieved 144 English language papers that described the medical and rehabilitative management of Indian children with CP. RESULTS: Quantitative, qualitative, and mixed research designs are published by a variety of health care professionals in India. Intervention (45%) and observational studies (30%) predominate. Outcomes were categorized using the World Health Organization's International Classification of Functioning, Disability and Health framework, with body structure and function most reported and activity/participation least reported; 57% described its re/habilitation interventions and 43% were medical interventions. INTERPRETATION: There is a substantial body of CP research in India that focuses on interventions to reduce impairments, with minimal attention given to activities and participation, environmental, and personal factors. Twenty-six per cent of studies are published in what appear to be 'predatory journals'. This paper serves as an alert about the presence of 'predatory journals' in medicine that may introduce publication bias, which can distort results reported in those studies individually, or from conclusions drawn in reviews that contain those studies. WHAT THIS PAPER ADDS: Cerebral palsy research in India focuses on interventions to reduce impairment. Activities, participation, and environmental factors are minimally addressed. Quantitative studies are more common than qualitative studies. Many Indian studies are published in journals that are not indexed in worldwide databases of scholarly journals.

TRATAMIENTO Y REHABILITACIÓN DE NIÑOS CON PARÁLISIS CEREBRAL EN LA INDIA: REVISIÓN PANORÁMICA: OBJETIVO: Describir la naturaleza y extensión de la literatura que trata sobre el manejo médico y de rehabilitación de la parálisis cerebral (PC) en la India. METODO: Con el fin de identificar artículos publicados entre 2005 y 2016, se utilizaron bases de datos académicos en línea de todo el mundo, directorios de investigación, imprentas de publicación de la India, y literatura no convencional. Obtuvimos 144 publicaciones en el idioma inglés que describían el manejo médico y de rehabilitación de niños con PC en la India. RESULTADO: Diseños de investigación de tipo cuantitativos, cualitativos y mixtos fueron publicados por una variedad de profesionales de la salud en India. Predominan los estudios de intervención (45%) y de observación (30%). Los resultados fueron categorizados utilizando el marco de la Clasificación Internacional de Funcionamiento, Discapacidad y Salud de la Organización Mundial de la Salud (OMS) con más reportes sobre estructuras y funciones corporales y menos reportes sobre actividad y participación; 57% describieron intervenciones de rehabilitación y 43% fueron intervenciones médicas. INTERPRETACIÓN: En la India hay un inventario sustancial de investigaciones sobre PC que se focalizan en intervenciones destinadas a reducir limitaciones, dando mínima atención a actividades y participación, factores ambientales y factores personales. Se publican 26% de estudios en los que parecerían ser revistas de dudosa calidad científica llamadas "revistas depredadoras". Este trabajo sirve como una alerta sobre la presencia en medicina de "revistas depredadoras" que pueden introducir publicaciones sesgadas, las que pueden distorsionar resultados publicados en esos estudios de manera individual, o sacar conclusiones erróneas en revisiones que contienen dichos estudios.

TRATAMENTO E REABILITAÇÃO DE CRIANÇAS COM PARALISIA CEREBRAL NA ÍNDIA: UMA REVISÃO DE ESCOPO: OBJETIVO: Descrever a natureza e extensão da literatura abordando o manejo médico e de reabilitação da paralisia cerebral (PC) na Índia. MÉTODO: Bases de dados científicas online de todo o mundo, diretórios de pesquisa, casas de publicação indianas, e literatura cinzenta foram usadas para identificar artigos publicados entre 2005 e 2016. Obtivemos 144 artigos em língua inglesa que descreveram o manejo médico e de reabilitação de crianças indianas com PC. RESULTADOS: Desenhos de pesquisas quantitativos, qualitativos, e mistos foram publicados por uma variedade de profissionais da saúde na Índia. Estudos de intervenção (45%) e observacionais (30%) predominaram. Os resultados foram categorizados usando a estrutura da Classificação Internacional de Funcionalidade, Incapacidade e Saúde da Organização Mundial de Saúde, sendo que a estrutura e função do corpo foi o domínio mais reportado e atividades/participação o menos reportado; 57% descreveram intervenções de reabilitação e 43% eram intervenções médicas. INTERPRETAÇÃO: Há uma quantidade substancial de pesquisas em PC na Índia que focam em intervenções para reduzir deficiências, com atenção mínima dada a atividades e participação, e fatores pessoais e ambientais. Vinte e seis por cento dos estudos foram publicados em jornais médicos aparentemente predatórios, o que pode introduzir vieses de publicação, e distorcer os resultados relatados nestes estudos individualmente, ou em conclusões obtidas em revisões que contém este estudo.

Assessing reading levels of health information: uses and limitations of flesch formula.

BACKGROUND: Written health information is commonly used by health-care professionals (HCPs) to inform and assess patients in clinical practice. With growing self-management of many health conditions and increased information seeking behavior among patients, there is a greater stress on HCPs and researchers to develop and implement readable and understandable health information. Readability formulas such as Flesch Reading Ease (FRE) and Flesch-Kincaid Reading Grade Level (FKRGL) are commonly used by researchers and HCPs to assess if health information is reading grade appropriate for patients. PURPOSE: In this article, we critically analyze the role and credibility of Flesch formula in assessing the reading level of written health information. DISCUSSION: FRE and FKRGL assign a grade level by measuring semantic and syntactic difficulty. They serve as a simple tool that provides some information about the potential literacy difficulty of written health information. However, health information documents often involve complex medical words and may incorporate pictures and tables to improve the legibility. In their assessments, FRE and FKRGL do not take into account (1) document factors (layout, pictures and charts, color, font, spacing, legibility, and grammar), (2) person factors (education level, comprehension, health literacy, motivation, prior knowledge, information needs, anxiety levels), and (3) style of writing (cultural sensitivity, comprehensiveness, and appropriateness), and thus, inadequately assess reading level. New readability measures incorporate pictures and use complex algorithms to assess reading level but are only moderately used in health-care research and not in clinical practice. Future research needs to develop generic and disease-specific readability measures to evaluate comprehension of a written document based on individuals' literacy levels, cultural background, and knowledge of disease.

Perspectives on rehabilitation of children with cerebral palsy: exploring a cross-cultural view of parents from India and Canada using the international classification of functioning, disability and health.

PURPOSE: To explore parents' perspectives on rehabilitation of their child with cerebral palsy and their information needs. METHODS: Semistructured interviews were conducted with parents of children with CP from India (n = 11) and Canada (n = 7). Data were analyzed through an interpretive description approach using the International Classification of Functioning, Disability and Health framework. RESULTS: Body Structure and Function: Indian parents were more focused on fixing body structure and function challenges, and independent walking, than Canadian parents. Activity and Participation: All Canadian children were actively involved in school and fun activities in the community. Due to lack of accessible services, Indian children had less school and community participation. Environmental factors: accessible communities, occupational therapy services and greater use of assistive devices enabled Canadian children. Social and cultural beliefs, lack of access to services and inaccessible communities were the barriers experienced by Indian parents. Information needs: both groups needed information to make their child more functional. CONCLUSION: Canadian parents experience a more enabling environment and express a more social view of their child's health, suggesting both education on the International Classification of Functioning, Disability and Health principles and services are needed to better enable and empower Indian parents. There remains a need for healthcare professionals and services in both countries to be more family-centered. Implications for rehabilitation To help parents in rehabilitating their children with cerebral palsy (CP), in India, there is a need to (1) incorporate ICF education into medical curricula and clinical practice; (2) increase the availability of skilled healthcare professionals and centers; (3) make infrastructural and policy reforms to make the society more accessible for the disabled children. Education, counseling and awareness about CP might help both groups of parents, society, and HCPs to change their beliefs and attitudes regarding CP and its rehabilitation. Both countries would benefit from user-friendly and transparent policies. This will help parents to become more aware of them and use them in the rehabilitation process.

Qualitative research in rehabilitation science: opportunities, challenges, and future directions.

PURPOSE: Qualitative research has had a significant impact within rehabilitation science over time. During the past 20 years the number of qualitative studies published per year in Disability and Rehabilitation has markedly increased (from 1 to 54). In addition, during this period there have been significant changes in how qualitative research is conceptualized, conducted, and utilized to advance the field of rehabilitation. The purpose of this article is to reflect upon the progress of qualitative research within rehabilitation to date, to explicate current opportunities and challenges, and to suggest future directions to continue to strengthen the contribution of qualitative research in this field. METHODS: Relevant literature searches were conducted in electronic data bases and reference lists. Pertinent literature was examined to identify current opportunities and challenges for qualitative research use in rehabilitation and to identify future directions. RESULTS: Six key areas of opportunity and challenge were identified: (a) paradigm shifts, (b) advancements in methodology, (c) emerging technology, (d) advances in quality evaluation, (e) increasing popularity of mixed methods approaches, and (f) evolving approaches to knowledge translation. Two important future directions for rehabilitation are posited: (1) advanced training in qualitative methods and (2) engaging qualitative communities of research. CONCLUSION: Qualitative research is well established in rehabilitation and has an important place in the continued growth of this field. Ongoing development of qualitative researchers and methods are essential. Implications for Rehabilitation Qualitative research has the potential to improve rehabilitation practice by addressing some of the most pervasive concerns in the field such as practitioner-client interaction, the subjective and lived experience of disability, and clinical reasoning and decision making. This will serve to better inform those providing rehabilitation services thereby benefiting patients that are utilizing these services. Changes over time in how qualitative research is conceptualized, conducted, and utilized to advance rehabilitation science have resulted in a number of unique opportunities and challenges in using qualitative research that must be considered within this field. Advances in methodology and increased expectations for evaluation must be considered to ensure quality and credibility of qualitative rehabilitation research within rehabilitation. Improved quality and credibility may increase likelihood of research dissemination and use by clinicians intervening within the rehabilitation process in order to improve clinical practice. In order to maximize opportunities and mitigate challenges there are two principal future directions for rehabilitation scientists to consider: (1) advancing training in qualitative methods to adequately prepare future rehabilitation scientists and (2) engaging qualitative communities of research.

Muscle strength differences in healthy young adults with and without generalized joint hypermobility: a cross-sectional study.

BACKGROUND: Generalized joint hypermobility (GJH), in the absence of symptoms, is a common clinical finding. The joint instability present due to excessive musculoskeletal flexibility in hypermobile joints impairs the external force production during muscle contraction. However, whether GJH is associated with muscle weakness is unclear. This study evaluated differences in upper and lower limb muscle strengths among asymptomatic young adults with and without GJH. METHODS: One hundred six young adults (53 hypermobile, i.e. 25 male (mean age 22 ± 1.8); 28 female (mean age 21 ± 1.8), and 53 non-hypermobile, i.e. 25 male (mean age 19 ± 1.06); 28 female (mean age 20 ± 1.4) were selected using a cut-off ≥ 4 on Beighton and Horan Joint Mobility Index. Isometric strength of elbow and knee extensors was measured using an isokinetic dynamometer. Independent sample t- tests were done to compare the muscle strengths of hypermobile and non-hypermobile participants. One-way ANCOVA was applied to control the effect of height and body mass on muscle strength. RESULTS: Male hypermobile participants had significantly less strength than non-hypermobile males in the right (71.7 Nm, SD = 23.1, vs 97.6 Nm, SD = 47.4, p = 0.006*) and left (74.8 Nm, SD = 24.3, vs 97.7 Nm, SD = 45.5, p = 0.007*) elbow extensors and right knee extensors (188.7 Nm, SD = 83.3, vs 228.3 Nm, SD = 106.7, p = 0.03*). In females, both elbow extensors (right: 51.9 Nm, SD = 16.2 vs 48.8 Nm, SD = 17.8, p = 0.4; left: 48.9 Nm, SD = 17.2, vs 44.7 Nm, SD = 15.1, p = 0.2) and knee extensors (right: 161.3 Nm, SD = 74.9 vs 145.5 Nm, SD = 75.8, p = 0.3; left: 155.2 Nm, SD = 73 vs 124.3 Nm, SD = 69.6, p = 0.07) strength were not statistically different between hypermobile and non-hypermobile participants. CONCLUSION: The findings indicate that male participants with GJH have less isometric muscle strength in both elbow extensors and right knee extensors compared to non-hypermobile male participants. Female hypermobile participants did not show any significant differences in muscle strength compared to non-hypermobile female participants.