Improving health in children with disabilities: an ...

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Improving health in children with disabilities: an intervention-development study to ... Newcastle University, UK; 2Leeds Community Healthcare NHS Trust, UK.

Improving health in children with disabilities: an intervention-development study to support participation in leisure in 8-12 year olds with communication and mobility limitations. Jennifer McAnuff MSc,1,2 Allan Colver MD,1 Tim Rapley PhD,1 Niina Kolehmainen PhD1 1 Institite of Health & Society, Newcastle University, UK; 2Leeds Community Healthcare NHS Trust, UK

PLAIN ENGLISH SUMMARY Participating in leisure activities is important for the health and well-being of all children. Children with communication and mobility difficulties participate in leisure much less than other children, and the gap widens at age 8-12 years. The proposed study asks: What influences leisure participation in these children? What can NHS clinicians do to support them? And, how should clinicians go about doing it? To answer these, the study will: review existing evidence; ask clinicians and parents for their views; work with clinicians and parents to turn their ideas into specific, practical solutions; and try out the solutions in the NHS. SCIENTIFIC ABSTRACT Approximately 7% (900,000) of UK children aged 0-18 years have disabilities. They may have diagnoses such as cerebral palsy or learning disabilities and often experience a combination of difficulties in communication and mobility. Children with disabilities experience significant restrictions in ‘participation’ – i.e. involvement in life situations, such as leisure, education and selfcare. These participation restrictions have negative consequences for their development, placing them at significant risk of long-term problems in health and wellbeing. Current childhood disability evidence proposes three pathways to participation: body functions/structures (e.g. joint mobility), personal factors (e.g. child’s motivation) and environmental factors (e.g. family behaviours). NHS interventions most commonly support participation by targeting body functions/structures. The interventions have been subject to a high volume of research over time, however there remains an absence of evidence that targeting body functions/structures translates to participation outcomes. Studies of children with disabilities have shown that personal and social environmental factors determine participation outcomes, however these pathways have rarely been systematically investigated and capitalised on. Research from other disability fields suggests that conceptualising participation as behaviour (i.e. “doing stuff”), and incorporating behaviour change techniques (e.g. confidence-building techniques) that target personal and/or social environmental factors into interventions, are effective at changing what people do in life situations. The proposed study will systematically draw on theory and evidence about participation as behaviour to: (i) develop evidence about specific, replicable intervention techniques to support participation in children with disabilities, specifically participation in leisure; and (ii) generate clear descriptions of feasible, acceptable ways to deliver these techniques in NHS settings. To achieve these aims, the study will address three questions: What personal/social environmental factors influence participation in leisure in children aged 8-12 years with communication and mobility limitations? What intervention techniques should NHS clinicians use to target these factors? And, how should clinicians go about delivering these techniques?

For more information on the study, please contact [email protected]

2 The project draws on the WHO International Classification of Functioning, Disability and Health, a conceptual framework that integrates biomedical, personal and environmental perspectives on illness and health. The methodology is based on the MRC guidance for developing complex interventions. The research plan will meet five objectives: 1) To identify modifiable personal and social environmental factors that explain participation in leisure in the target population; 2) To identify and specify intervention techniques with evidence of their potential to modify these factors to change participation; 3) To establish a consensus among experienced clinicians, researchers and service users about which of the techniques show the greatest potential for changing participation and will thus be taken forward for further intervention development; 4) To generate descriptions of acceptable, feasible ways of delivering these techniques in NHS settings, as perceived by service users and clinicians; and 5) To test the feasibility of delivering these techniques and measuring their effects. The methods used will consist of two systematic reviews of current evidence (objectives 1 – 2); a Delphi study involving clinicians, researchers and service users (objective 3); focus groups with children, parents and clinicians (objective 4); and three mixed methods (QUANT+qual) single case studies (objective 5). The primary output will be an intervention manual, based on evidence, that will: provide a list of clearly specified, replicable intervention techniques for targeting modifiable personal and social environmental factors related to children’s participation in leisure; and present clear descriptions of feasible and acceptable approaches to delivering the techniques in NHS settings. The manual will enable NHS clinicians to provide evidence-based support for participation outcomes, and will provide a basis for further large-scale effectiveness research on participation interventions. The secondary output will be a design for a feasibility trial of selected intervention techniques, with a view to a definitive evaluation trial.

This abstract summarises proposed independent research funded by Health Education England / National Institute for Health Research (NIHR) under the Clinical Doctoral Research Fellowship Scheme (CDRF-2014-05-043). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

For more information on the study, please contact [email protected]