Evidence to Practice Commentary Advancing the Evidence and the Right to Participation

Novak, Iona

doi:10.3109/01942638.2013.834179

Cited by 8 publications

(8 citation statements)

References 21 publications

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“…coached parents. These coaching approaches to participation interventions are consistent with current theories about how to achieve beneficial participation outcomes . In contrast to individualized approaches, Guli et al .…”

Section: Discussionsupporting

confidence: 69%

“…These coaching approaches to participation inter-ventions are consistent with current theories about how to achieve beneficial participation outcomes. 32,33 In contrast to individualized approaches, Guli et al 28 implemented a group-based manualized drama programme for children with autism spectrum disorder, non-verbal learning disorders, or attention-deficit-hyperactivity disorder. The programme aimed to improve the social competence of participants in natural settings by enhancing interactions between participants.…”

Section: Interventionsmentioning

confidence: 99%

See 1 more Smart Citation

The effect of interventions aimed at improving participation outcomes for children with disabilities: a systematic review

Adair

Ullenhag

Keen

et al. 2015

Develop Med Child Neuro

149

141

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CAPEChildren's Assessment of Participation and Enjoyment RCT Randomized controlled trial AIM Enhancement of participation has been described as the ultimate outcome for health and educational interventions. The goal of this systematic review was to identify and critically appraise studies that aimed to improve the participation outcomes of children with disabilities.METHOD Nine databases that index literature from the fields of health, psychology, and education were searched to retrieve information on research conducted with children with disabilities aged between 5 years and 18 years. Articles were included if the author(s) reported that participation was an intended outcome of the intervention. The articles included were limited to those reporting high-level primary research, as defined by Australia's National Health and Medical Research Council evidence hierarchy guidelines. No restrictions were placed on the type of intervention being investigated.RESULTS Seven randomized controlled or pseudo-randomized studies were included. Only three of these studies identified participation as a primary outcome. Both individualized and group-based approaches to enhancing participation outcomes appeared to be effective. Studies of interventions with a primary focus on body function or activity level outcomes did not demonstrate an effect on participation outcomes.

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Section: Discussionsupporting

confidence: 69%

Section: Interventionsmentioning

confidence: 99%

The effect of interventions aimed at improving participation outcomes for children with disabilities: a systematic review

Adair

Ullenhag

Keen

et al. 2015

Develop Med Child Neuro

149

141

View full text Add to dashboard Cite

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“…To ensure new models of provision meet the needs of stakeholders, further service development of the work should be co-produced [39, 43, 44], involving DMD family members, specialist and community physiotherapists, representatives of schools and/or teaching assistants, community AT pool providers and third sector organisations. Participation is currently inequitable, being determined by income and location [25, 45]. The UN Convention on the Rights of Persons with Disabilities (Articles 19, 25 and 30) [46] and, in the UK, The Children and Families Act 2014 (special educational and health provision reasonably required) [47, 48] provide an ethical and legal basis to guide co-production of new services.…”

Section: Discussionmentioning

confidence: 99%

Aquatic therapy for boys with Duchenne muscular dystrophy (DMD): an external pilot randomised controlled trial

Hind

Parkin

Whitworth

et al. 2017

Pilot Feasibility Stud

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BackgroundStandard treatment of Duchenne muscular dystrophy (DMD) includes regular physiotherapy. There are no data to show whether adding aquatic therapy (AT) to land-based exercises helps maintain motor function. We assessed the feasibility of recruiting and collecting data from boys with DMD in a parallel-group pilot randomised trial (primary objective), also assessing how intervention and trial procedures work.MethodsAmbulant boys with DMD aged 7–16 years established on steroids, with North Star Ambulatory Assessment (NSAA) score ≥8, who were able to complete a 10-m walk test without aids or assistance, were randomly allocated (1:1) to 6 months of either optimised land-based exercises 4 to 6 days/week, defined by local community physiotherapists, or the same 4 days/week plus AT 2 days/week. Those unable to commit to a programme, with >20% variation between NSAA scores 4 weeks apart, or contraindications to AT were excluded.The main outcome measures included feasibility of recruiting 40 participants in 6 months from six UK centres, clinical outcomes including NSAA, independent assessment of treatment optimisation, participant/therapist views on acceptability of intervention and research protocols, value of information (VoI) analysis and cost-impact analysis.ResultsOver 6 months, 348 boys were screened: most lived too far from centres or were enrolled in other trials; 12 (30% of the targets) were randomised to AT (n = 8) or control (n = 4). The mean change in NSAA at 6 months was −5.5 (SD 7.8) in the control arm and −2.8 (SD 4.1) in the AT arm. Harms included fatigue in two boys, pain in one. Physiotherapists and parents valued AT but believed it should be delivered in community settings. Randomisation was unattractive to families, who had already decided that AT was useful and who often preferred to enrol in drug studies. The AT prescription was considered to be optimised for three boys, with other boys given programmes that were too extensive and insufficiently focused. Recruitment was insufficient for VoI analysis.ConclusionsNeither a UK-based RCT of AT nor a twice weekly AT therapy delivered at tertiary centres is feasible. Our study will help in the optimisation of AT service provision and the design of future research.Trial registration ISRCTN41002956 Electronic supplementary materialThe online version of this article (doi:10.1186/s40814-017-0132-0) contains supplementary material, which is available to authorized users.

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“…[96][97][98][99] The conceptual framework developed through an integrative review by Kanagasabai et al 100 suggests contextual conditions under which participation is reduced or maintained ( Figure 2). Another review, by Kang et al, 101 proposes that participation is optimised with physical, social and self-engagement.…”

Section: Modelling Process: Developing Programme Theorymentioning

confidence: 99%

“…64,96 Clear principles are required to guide the coproduction of new services 241 and these might be provided by the United Nations Convention on the Rights of Persons with Disabilities, which urges state providers to promote 'full inclusion and participation in the community' (Article 19), provide 'services designed to minimize and prevent further disabilities, including among children . .…”

Section: Focus Is On Equality and Narrowing Health Inequalitiesmentioning

confidence: 99%

Aquatic therapy for children with Duchenne muscular dystrophy: a pilot feasibility randomised controlled trial and mixed-methods process evaluation

Hind

Parkin

Whitworth

et al. 2017

Health Technol Assess

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BackgroundDuchenne muscular dystrophy (DMD) is a rare disease that causes the progressive loss of motor abilities such as walking. Standard treatment includes physiotherapy. No trial has evaluated whether or not adding aquatic therapy (AT) to land-based therapy (LBT) exercises helps to keep muscles strong and children independent.ObjectivesTo assess the feasibility of recruiting boys with DMD to a randomised trial evaluating AT (primary objective) and to collect data from them; to assess how, and how well, the intervention and trial procedures work.DesignParallel-group, single-blind, randomised pilot trial with nested qualitative research.SettingSix paediatric neuromuscular units.ParticipantsChildren with DMD aged 7–16 years, established on corticosteroids, with a North Star Ambulatory Assessment (NSAA) score of 8–34 and able to complete a 10-m walk without aids/assistance. Exclusions: > 20% variation between baseline screens 4 weeks apart and contraindications.InterventionsParticipants were allocated on a 1 : 1 ratio to (1) optimised, manualised LBT (prescribed by specialist neuromuscular physiotherapists) or (2) the same plus manualised AT (30 minutes, twice weekly for 6 months: active assisted and/or passive stretching regime; simulated or real functional activities; submaximal exercise). Semistructured interviews with participants, parents (n = 8) and professionals (n = 8) were analysed using Framework analysis. An independent rater reviewed patient records to determine the extent to which treatment was optimised. A cost-impact analysis was performed. Quantitative and qualitative data were mixed using a triangulation exercise.Main outcome measuresFeasibility of recruiting 40 participants in 6 months, participant and therapist views on the acceptability of the intervention and research protocols, clinical outcomes including NSAA, independent assessment of treatment optimisation and intervention costs.ResultsOver 6 months, 348 children were screened – most lived too far from centres or were enrolled in other trials. Twelve (30% of target) were randomised to AT (n = 8) or control (n = 4). People in the AT (n = 8) and control (n = 2: attrition because of parental report) arms contributed outcome data. The mean change in NSAA score at 6 months was –5.5 [standard deviation (SD) 7.8] for LBT and –2.8 (SD 4.1) in the AT arm. One boy suffered pain and fatigue after AT, which resolved the same day. Physiotherapists and parents valued AT and believed that it should be delivered in community settings. The independent rater considered AT optimised for three out of eight children, with other children given programmes that were too extensive and insufficiently focused. The estimated NHS costs of 6-month service were between £1970 and £2734 per patient.LimitationsThe focus on delivery in hospitals limits generalisability.ConclusionsNeither a full-scale frequentist randomised controlled trial (RCT) recruiting in the UK alone nor a twice-weekly open-ended AT course delivered at tertiary centres is feasible. Further intervention development research is needed to identify how community-based pools can be accessed, and how families can link with each other and community physiotherapists to access tailored AT programmes guided by highly specialised physiotherapists. Bayesian RCTs may be feasible; otherwise, time series designs are recommended.Trial registrationCurrent Controlled Trials ISRCTN41002956.FundingThis project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full inHealth Technology Assessment; Vol. 21, No. 27. See the NIHR Journals Library website for further project information.

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Evidence to Practice Commentary Advancing the Evidence and the Right to Participation

Cited by 8 publications

References 21 publications

The effect of interventions aimed at improving participation outcomes for children with disabilities: a systematic review

The effect of interventions aimed at improving participation outcomes for children with disabilities: a systematic review

Aquatic therapy for boys with Duchenne muscular dystrophy (DMD): an external pilot randomised controlled trial

Aquatic therapy for children with Duchenne muscular dystrophy: a pilot feasibility randomised controlled trial and mixed-methods process evaluation

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