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Background/Objectives: Children’s motivational predisposition may directly impact on engagement in therapy and adherence to intervention. To examine relationships between mastery motivation and other personal and environmental factors in school aged children with congenital hemiplegia.

Objective: The International Classification of Functioning and Disability (ICF) centres on participation as the ultimate outcome for persons with disabling conditions. In the ICF, participation is defined as involvement within a life situation and encompasses personal maintenance, mobility, information exchange, social relationships, home life, education, work and employment, economic life and community, social, and civic life. Children's participation needs to be considered in the context of school, home, and broader community environments. This study aimed to investigate the validity, reliability, sensitivity to change, feasibility, accessibility, and practicality of use of measurements of participation of primary school children with hemiplegia. Design: A systematic review. Method: Inclusion criteria: assessments that measure primary school aged children (5-13y) with cerebral palsy or physical disabilities AND participation (at least 30% content), but may also include activity and environmental factors. Exclusion criteria: papers not published in English that assess quality of life, impairments, communication, or interpersonal relationships. Three raters independently assessed all papers and reached consensus. Results: Systematic searching identified 17 assessments. Consensus agreement was reached for the Canadian Occupational Performance Measure (COPM); School Function Assessment (SFA);' Assessment of Life Habits (LIFE-H for children 1.0);2 Children's Assessment of Participation and Enjoyment(CAPE);3 Goal Attainment Scaling (GAS); and School Outcomes Assessment. The Children Helping Out: responsibilities, Expectations and Supports (CHORES) was selected by two of the raters. The CAPE, SFA, and LIFE-H were found to have the best clinimetric properties. The LIFE-H covers 13 life habit areas. Content validity is good and test retest reliability for most areas is adequate (ICC=O.314.74).* The SFA is judgement based, with specific assessment of participation in school. It has high internal consistency (coefficient alpha=0.924.98), excellent test retest reliability (ICC=0.824.98),and adequate interrater reliability (ICC=0.624.73).' Four studies have supported content and construct validity. The CAPE measures participation in non-school mandated activities. Test development and standardization indicates sufficient internal consistency (0.42 formal domain, 0.76 informal domain), test retest reliability (ICC=0.64-0.86) and validity3 Conclusion: The most suitable measures of participation for primary school children with hemiplegia are the CAPE and LIFE-H for home and broader community environments and the SFA for the school environment. The results of this review will further inform the outcome measures for the participation domain in a randomized trial of upper limb training in children with hemiplegia.

Background Promoting participation physical activity (PA) is an important means of promoting healthy growth and development in children with cerebral palsy (CP). The ActiGraph is a uniaxial accelerometer that provides a realtime measure of PA intensity, duration and frequency. Its small, light weight design makes it a promising measure of activity in children with CP. To date no study has validated the use of accelerometry as a measure of PA in ambulant adolescents with CP. Objectives To evaluate the validity of the ActiGraph accelerometer for measuring PA intensity in adolescents with CP, using oxygen consumption (VO2), measured using portable indirect calorimetry (Cosmed K4b2), as the criterion measure. Design Validation Study Participants/Setting: Ambulant adolescents with CP aged 10–16 years, GMFCS rating of I-III. The recruitment target is 30 (10 in each GMFCS level). Materials/Methods Participants wore the ActiGraph (counts/min) and a Cosmed K4b2 indirect calorimeter (mL/kg/min) during six activity trials: quiet sitting (QS), comfortable paced walking (CPW), brisk paced walking (BPW), fast paced walking (FPW), a ball-kicking protocol (KP) and a ball-throwing protocol (TP). MET levels (multiples of resting metabolism) for each activity were predicted from ActiGraph counts using the Freedson age-specific equation (Freedson et al. 2005) and compared with actual MET levels measured by the Cosmed. Predicted and measured METs for each activity trial were classified as light (> 1.5 METs and

Aim To gain insight into parents’ perspectives about their decision‐making process concerning nusinersen treatment for their child, including perceived needs and concerns, and to explore factors that influence this process. Method This was an exploratory qualitative interview study among parents of children with spinal muscular atrophy types 1 to 3. Data were analysed using inductive thematic analysis. Results Nineteen parents of 16 children representing 13 families participated. A wide variety of perspectives was reported ranging from a biomedical approach, which focused on battling the disease, to a holistic approach, which aimed for a good quality of life for their child. The most important factors that helped parents to decide were honest and neutral communication with their physician and access to available information. Interpretation It is important physicians understand that there are different perspectives influencing the decision‐making process. Physicians should create an environment that allows parents to accept or reject treatment by communicating honestly and openly with them and by discussing both options extensively. Clear information about pros and cons, recent developments in research, and the experiences of other parents should be made available to enable parents to make an informed decision. What this paper adds Parents perceived different needs and concerns about nusinersen treatment, which emphasized individual differences.Parents’ perspectives varied from battling the disease to preserving quality of life.Life expectancy, stopping deterioration, and improving quality of life were the perceived benefits of nusinersen treatment.Open communication about the pros and cons of treatment with clinicians facilitated decision‐making.Clear and honest information facilitated the alignment of values and goals., What this paper adds Parents perceived different needs and concerns about nusinersen treatment, which emphasized individual differences.Parents’ perspectives varied from battling the disease to preserving quality of life.Life expectancy, stopping deterioration, and improving quality of life were the perceived benefits of nusinersen treatment.Open communication about the pros and cons of treatment with clinicians facilitated decision‐making.Clear and honest information facilitated the alignment of values and goals. This article's abstract has been translated into Spanish and Portuguese. Follow the links from the abstract to view the translations.

Currently, coaching is increasingly applied to foster the involvement of families with an infant or young child with special needs in early intervention and paediatric rehabilitation. Coaching practices are included in many forms of intervention and are regarded as essential to reach beneficial outcomes for the child and family. There are, however, many ambiguities that blur the concept of coaching and hamper its understanding and integration as an evidence‐based approach in early intervention and paediatric rehabilitation: lack of differentiation between coaching and training of families, for example. Challenges to incorporate coaching into professional practice relate to adult learning processes and knowledge acquisition, and transformation of attitudes, beliefs, and treatment habits. In this paper, we review the barriers encountered and the possibilities available to promote successful implementation of coaching in early childhood interventions. What this paper adds Literature defines coaching ambiguously, which hampers its implementation in early intervention.The term ‘coaching’ should be reserved for relationship‐directed, family‐centred intervention., What this paper adds Literature defines coaching ambiguously, which hampers its implementation in early intervention.The term ‘coaching’ should be reserved for relationship‐directed, family‐centred intervention. Video Podcast: https://youtu.be/mIrUbjwj-pw

To describe the nature and extent of the literature addressing the medical and its re/habilitative management of cerebral palsy (CP) in India.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.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.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.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.

Aim To investigate the efficacy of waiting room media for reducing anxiety and increasing satisfaction at a paediatric rehabilitation hospital. Method In this clustered, parallel, randomized controlled trial, 310 young people with disabilities (age range 5-19y) and their parents attending outpatient clinics were assigned to interactive media (n=113), a silent nature video (n=97), or media-free comparison (n=100) groups. Young person and parent anxiety was reported using the State-Trait Anxiety Inventory (STAI) on arrival and after 10 minutes in the waiting space. Questionnaires measured young person, parent, and staff satisfaction. Results Young people exposed to interactive media reported a postexposure state anxiety that was 1.1 raw points (2.7 standardized points) lower on the STAI than the comparison group (95% confidence interval [CI] -1.9 to -0.22). There was no difference in postexposure state anxiety between the passive media and comparison groups (95% CI -0.64 to 1.1). Parents' state anxiety did not differ between conditions, but interactive media were associated with greater satisfaction (p=0.009). Of 120 staff, 119 reported that interactive media improved the clinic experience for families. Interpretation Interactive media designed for accessible, hands-free play mitigate waiting anxiety and increases satisfaction. This paper provides evidence to guide design and decision-making around the use of interactive media in health care spaces. What this paper adds Interactive media reduced preclinic waiting anxiety for young people with disabilities. Interactive media were accessible to young people with a range of mobility. Interactive media increased parental and staff satisfaction in the clinic. Guidelines for the design of hands-free, inclusive interactive media for health care facilities are presented.

Item does not contain fulltext The aim of this paper was to systematically review the literature on the significance of specific neurological signs in infancy, in particular in infants at risk for developmental problems such as cerebral palsy (CP). A literature search was performed using the databases PubMed, Embase, Web of Science, and AMED. Papers on infantile reactions ('primitive reflexes') and postural reactions were included if data were available allowing for calculation of sensitivity, specificity, or positive and negative predictive value for CP or atypical developmental outcome. Our search identified 23 articles on 20 different neurological signs. Properties of six neurological signs were reported in at least three different papers. The data indicated that, in early infancy, an absent Moro or plantar grasp response may be predictive for adverse developmental outcome. After early infancy, persistence of the Moro response and asymmetric tonic neck reflex was clinically significant. Prediction of a delayed emergence of the parachute reaction increases with age. Abnormal performances on the pull-to-sit manoeuvre and vertical suspension test have predictive significance throughout infancy. The neurological signs reviewed have some predictive value in infants at risk. For most of the signs, criteria for abnormality and significance are age-dependent.

Autism is a polysemous concept. It is defined as a neurodevelopmental disorder that is diagnosed based on an assessment of behaviour and dysfunction. Autism also refers to a specific way of information or sensorial processing. For those diagnosed with autism, it is a real and shared experience. In this paper, I sketch the moral work that biological conceptions of autism perform. They help to conceptualize the diagnosis and associated challenges as real and they remove some of the blame from the diagnosed person and/or their parents. But such approaches also risk neglecting the role of behaviour as a meaningful reaction to experiences. In thinking about the ethics of autism research, diagnosis of autism, and autism care, the recent findings of epigenetics and systems biology may help us overcome the dichotomy between biology and psyche, and point the way to a more nuanced and ethical view. What this paper adds The meaning of ‘autism’ has different layers and as such autism is a polysemous concept.The lived experience of autistic people matters in research., What this paper adds The meaning of ‘autism’ has different layers and as such autism is a polysemous concept.The lived experience of autistic people matters in research. This article is commented on by Graf on page 994 of this issue. This article's abstract has been translated into Spanish and Portuguese. Follow the links from the abstract to view the translations.

Aim The aim of this review was to synthesize empirical evidence of family factors associated with participation of children with disabilities aged 5 to 12 years to inform the development of family‐centred participation‐fostering interventions. Method A systematic search was performed for articles published in English between 2001 and 2017 in MEDLINE, PsycINFO, CINAHL, Scopus, and ASSIA following the Preferred Reporting Items for Systematic Review and Meta‐Analysis (PRISMA) guidelines. Quality of evidence was appraised using the Research Triangle Institute Item Bank. Family factors associated with participation were identified and assessed using a multistage ‘semi‐quantitative’ approach. Results Thirty studies were included in the review. Four non‐modifiable ‘status’ factors consistently associated with participation were parental ethnicity, parental education, family type, and family socio‐economic status. Six modifiable ‘process’ factors with consistent associations with participation were parental mental and physical health functioning, parental self‐efficacy beliefs, parental support, parental time, family preferences, and activity orientation. Interpretation Rehabilitation professionals should direct their focus towards modifiable family factors as primary targets for family‐centred interventions. Strategies that can improve families’ access to information, counselling, and community support services are likely to support children's participation by empowering families and optimizing their health and well‐being. What this paper adds Non‐modifiable ‘status’ and modifiable ‘process’ factors are important in participation of children with disabilities.Disadvantaged family circumstances shaped by status factors are associated with reduced participation.Key process factors for intervention are parental mental and physical health and parental self‐efficacy beliefs.Other important process factors for intervention are parental support and time, family preferences, and activity orientation., What this paper adds Non‐modifiable ‘status’ and modifiable ‘process’ factors are important in participation of children with disabilities.Disadvantaged family circumstances shaped by status factors are associated with reduced participation.Key process factors for intervention are parental mental and physical health and parental self‐efficacy beliefs.Other important process factors for intervention are parental support and time, family preferences, and activity orientation. This article is commented on by Anaby and Pozniak on page https://doi.org/10.1111/dmcn.14156 of this issue. This article's abstract has been translated into Spanish and Portuguese. Follow the links from the http://onlinelibrary.wiley.com/doi/10.1111/dmcn.14133/abstract to view the translations.

Aim The psychological and psychiatric outcome of children with acquired brain injury is influenced by many variables. A review was undertaken to clarify the contribution of family function, how it relates to injury severity, and what particular aspects of family function influence psychological outcome in this group. Method A systematized review of the literature of studies published between 1970 and 2012 from OvidMedline, PsychoInfo, PsycARTICLES, and Cochrane was undertaken focusing on family function, injury severity, and psychiatric outcome. Results Thirty-six papers met the inclusion criteria. Injury severity was linked to the development of organic personality change. Family function before injury, measured by the Family Assessment Device or the Clinical Rating Scale, had a statistically significant effect on general psychological functioning in six out of eight studies. Family function had a significant effect for oppositional defiant disorder and secondary attention-deficit–hyperactivity disorder. The effects of family function may differ depending on the age of the child and the severity of the injury. Some styles of parenting moderated recovery. After injury, family function was related to the child's contemporaneous psychiatric symptoms. The level of evidence for these papers was 3 or 4 (Oxford Centre for Evidence-based Medicine criteria). Interpretation Screening for some aspects of family functioning before injury and family function during the rehabilitation phase may identify children at risk of psychiatric disorders.

Children with hearing impairment frequently show behavioural problems.1–3 In terms of the type of behavioural difficulty associated with hearing impairment, difficulties related to attention have been specifically noted.4 For example, between one-third and one-half of children with hearing impairment have been reported as showing externalizing behavioural problems including difficulties with attention.5 Emotional problems are also a feature of children with hearing impairment.6,7 It has been suggested that speech and signing were a mediator of the effect of hearing loss on behaviour.1 The effect of hearing impairment on behaviour was less marked for children with better communication skills. These results parallel those from hearing children. There are well-replicated findings that, for a range of language related skills, poor development is linked with increased behavioural problems.8 As with hearing children, behavioural problems in young children with hearing impairment may be associated with a wide range of biological (e.g. preterm birth) and social (e.g. unresponsive parenting) factors.9 Moreover it is well established that children with physical disabilities and chronic illnesses have an elevated rate of behavioural and emotional difficulties.10 The factor of central interest in this paper is whether differences in the age at which permanent childhood hearing impairment (PCHI) is identified in children are related to the risk of behavioural problems. It has been suggested that enrolment in an intervention programme by the age of 9 months lessens the deficit of verbal ability compared with later intervention by as much as 19 points in the verbal ability quotient.11,12 We have shown previously, in the sample discussed in this paper, that behavioural problems are found more frequently in children with PCHI than in hearing children.2 We have also shown, in the same sample, that early confirmation of PCHI is followed by improved language (particularly receptive language) abilities at primary school age.13,14 It would therefore be expected that early confirmation would decrease the rate of behavioural problems in children with PCHI because language ability mediated the impact of PCHI on behaviour. This paper tests this hypothesis in children with hearing loss taking part in a follow-up of a cohort study of the outcome of universal newborn screening for hearing impairment.

Aim This paper is a systematic review of physical activity measurement instruments for field-based studies involving children with cerebral palsy (CP). Method Database searches using PubMed Central, MEDLINE, CINAHL Plus, PsycINFO, EMBASE, Cochrane Library, and PEDro located 12 research papers, identifying seven instruments that met the inclusion criteria of (1) having been developed for children aged 0 to 18 years, (2) having been used to evaluate a physical activity dimension, and (3) having been used in a field-based study involving children with CP. The instruments reviewed were the Activities Scale for Kids – Performance version (ASKp), the Canada Fitness Survey, the Children’s Assessment of Participation and Enjoyment/Preferences for Activities of Children (CAPE/PAC), the Compendium of Physical Activities, the Physical Activity Questionnaire – Adolescents (PAQ-A), StepWatch, and the Uptimer. Second-round searches yielded 11 more papers, providing reliability and validity evidence for the instruments. Results The instruments measure physical activity frequency, mode, domain, and duration. Although most instruments demonstrated adequate reliability and validity, only the ASKp and CAPE/PAC have established reliability and validity for children with physical disabilities; the Uptimer has established concurrent validity. No instrument measuring intensity in free-living has been validated or found reliable for children with CP. Interpretation The findings suggest that further studies are needed to examine the methodological properties of physical activity measurement in children with CP. Combining subjective and objective instruments is recommended to achieve better understanding of physical activity participation.

This paper which Dr. Hillman gave as his Presidential address in Las Vegas was being prepared for the press when Dr. Hillman died. He and I had discussed the changes which he wished to make for publication both at Las Vegas and in Nashville but, alas, the suggested revisions had not been made. In general, he wished to cut the opening section which reviewed past Academy policy and activity, as he felt this was more appropriate for a spoken paper than a published one, but he wished to expand the sections where he was critically appraising our present efforts. For instance, we had discussed expanding his comments on the multi-disciplinary team and making these more astringent. Under the circumstances the responsibility for final revision of the text has fallen on me. I have tried to carry out the changes as I think he envisaged them, but inevitably have made fewer changes than were planned. I have kept as closely to his text as possible.