Participation in physical leisure pursuits and play in children with motor impairments: developing a theory- and evidenc

Lead Research Organisation: Newcastle University
Department Name: Inst of Health and Society

Abstract

Between six and nine percent of children experience problems with their motor abilities (e.g. coordination, balance) and participation in daily life (including taking part in physical leisure pursuits and play). These children are at high risk of long-term health and social difficulties. Appropriate treatments and support potentially have considerable lifetime benefits for these children and their families, and for society more widely.

Currently, the help available to these children consists of different kinds of exercises and games recommended by occupational therapists and physiotherapists. There is little research to say whether these actually help the children. Research in other fields has shown that using strategies that support, for example, the person‘s confidence or motivation can make a difference. Although therapists include some of these strategies in the exercises and games already, they do not do this systematically.

The proposed project will work with children and their parents, and use two frameworks (from the World Health Organisation and the Medical Research Council) to develop ways to increase children‘s participation in physical leisure pursuits and play in ways acceptable to them. The project will pave the way for future development of non-drug treatments for children.

Technical Summary

Motor impairments (e.g. difficulties with motor control, muscle tone) affect between 6-9% of children. These children are often diagnosed with conditions such as developmental coordination disorder or cerebral palsy. They experience significant difficulties in participating in everyday life and are at high risk of long-term health and social problems. Despite this high burden of disease, interventions to manage these problems have been subject to little systematic research.

Current interventions for these children consist of ‘therapeutic activities‘ (e.g. exercises) that aim to increase what the children do in their daily lives. The interventions are poorly defined, lack explicit hypotheses about why or how they might work, and have insufficient evidence to support their effectiveness. The proposed research will identify:

The ‘key ingredients‘ of an effective intervention to increase participation in physical leisure pursuits and play in children with motor impairments.
How these ingredients can be combined in a feasible and acceptable intervention.

Research in stroke and chronic pain has shown that incorporating behaviour change strategies (e.g. confidence-building techniques) into therapeutic interventions significantly improves what patients can do (i.e. activity) and actually do (i.e. participation). Carers have also been shown to have an important role, suggesting that effective interventions should systematically incorporate therapeutic, personal (e.g. child‘s confidence) and environmental (e.g. parents‘ beliefs) components.

This 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, operationalised into five steps:
(1) identify biomedical, personal and environmental factors proposed to predict children‘s participation in leisure pursuits and play;
(2) develop an explicit model of the key predictors of participation;
(3) select therapeutic and behaviour change strategies to target the proposed predictors;
(4) operationalise the strategies in a feasible and acceptable intervention; and
(5) model the intervention processes and outcomes within single cases.

The primary output will be a detailed protocol for an intervention that is based on empirical evidence and a theoretical model of disability in terms of behaviour (i.e. what children actually do). Such an intervention, if subsequently found to be effective, will support children with motor difficulties in attaining life-long well-being and participation in society. The project will also be an exemplar for the development of non-drug interventions by allied health professionals.

Publications

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Armitage A (2016) Implementing better healthcare: using audit and feedback to change occupational therapists' practice in Association of Pediatric Chartered Physiotherapists' Journal

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Armitage S (2017) Ingredients and change processes in occupational therapy for children: a grounded theory study. in Scandinavian journal of occupational therapy

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McAnuff J (2015) Family-clinician interactions in children's health services: a secondary analysis of occupational therapists' practice descriptions. in Health expectations : an international journal of public participation in health care and health policy

 
Title PPI Drawings by JB 
Description Drawn images to facilitate engagement of young children. These were developed from children's drawings by an artist, and continue to be used by our group for dissemination, engagement and illustration. 
Type Of Art Artwork 
Year Produced 2015 
Impact Better engagement of children, but also enthusiastic engagement of other researchers and clinicians through visual media. 
 
Description DoH Under5s Physical Activity Infographic
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
URL https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/541228/Children_0-5_infogr...
 
Description Evidence Exchange workshops to professionals
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact Approximately 100 community paediatric professionals have attended specific training workshops on how to implement family centred goals in practice. A formal evaluation and feedback from participants indicate the session have changed practice, and that these changes improve efficiency of care which in turn improves access to care.
 
Description Doctoral Research Training Fellowship
Amount £364,106 (GBP)
Funding ID DRF-2016-09-028 
Organisation National Institute for Health Research 
Sector Public
Country United Kingdom
Start 01/2017 
End 12/2020
 
Description FMSEngage
Amount £1,980 (GBP)
Organisation Newcastle University 
Sector Academic/University
Country United Kingdom
Start 01/2016 
End 03/2016
 
Description Fellowships - CAT scheme
Amount £277,700 (GBP)
Funding ID CDRF-2014-05-043 
Organisation National Institute for Health Research 
Sector Public
Country United Kingdom
Start 04/2015 
End 03/2018
 
Description Foundation Fellowship
Amount £283,202 (GBP)
Funding ID 8911 
Organisation Versus Arthritis 
Sector Charity/Non Profit
Country United Kingdom
Start 04/2018 
End 03/2021
 
Description HTA
Amount £245,174 (GBP)
Funding ID HTA - 13/144/01 
Organisation National Institute for Health Research 
Sector Public
Country United Kingdom
Start 08/2015 
End 05/2017
 
Description Health Technology Assessment
Amount £251,448 (GBP)
Funding ID 17/70/01 
Organisation National Institute for Health Research 
Sector Public
Country United Kingdom
Start 04/2018 
End 06/2019
 
Description Impact Awards
Amount $300,000 (CAD)
Organisation Ontario Child Health Support Unit 
Sector Charity/Non Profit
Country Canada
Start 04/2016 
End 03/2018
 
Description Improvement/Implementation Science Fund
Amount £38,506 (GBP)
Organisation The Children's Foundation 
Sector Charity/Non Profit
Country United Kingdom
Start 09/2017 
End 08/2020
 
Description Integrated Clinical Academic Fellowships - Senior Clinical Lecturer
Amount £549,316 (GBP)
Funding ID ICA-SCL-2015-01-003 
Organisation National Institute for Health Research 
Sector Public
Country United Kingdom
Start 06/2016 
End 05/2021
 
Description PDG
Amount £99,633 (GBP)
Organisation National Institute for Health Research 
Sector Public
Country United Kingdom
Start 04/2015 
End 09/2016
 
Description RCF NuTH
Amount £10,040 (GBP)
Funding ID RCF1516040 
Organisation Newcastle upon Tyne Hospitals NHS Foundation Trust 
Sector Academic/University
Country United Kingdom
Start 09/2015 
End 02/2016
 
Description UKOTRF
Amount £10,000 (GBP)
Organisation Royal College of Occupational Therapists 
Sector Learned Society
Country United Kingdom
Start 04/2014 
End 03/2015
 
Title A database of parents' beliefs about children's participation in leisure 6-8yrs 
Description A database of qualitative evidence from a systematic review. Consists of parents' beliefs about the factors related to their children's participation in leisure. 
Type Of Material Database/Collection of data 
Year Produced 2012 
Provided To Others? Yes  
Impact Those accessing the data prepared and delivered a presentation to MSc students in their local University. 
 
Title A framework for specifying rehabilitation interventions 
Description A framework that enables rehabilitation researchers to categorise the components of their interventions to the active ingredients, mechanisms, and context. 
Type Of Material Data analysis technique 
Year Produced 2013 
Provided To Others? Yes  
Impact Other researchers have reported they have changed their intervention research approach as the result of using the framework. 
 
Description JMcA NIHR PhD proposal 
Organisation Leeds Community Healthcare NHS Trust
Department Children's Occupational Therapy
Country United Kingdom 
Sector Hospitals 
PI Contribution Substantial intellectual input in the initiation, design and planning of the project.
Collaborator Contribution Leeds: a person applying for an NIHR fellowship Newcastle: intellectual input and supervision for the proposed fellow.
Impact NIHR CAT PhD Fellowship applications submitted in April 2014; interview in October 2014; outcome pending. Increased clinical academic capacity in Leeds NHS - evidenced e.g. as new clinical practices and interventions implemented in the service, a number of presentations and invited workshops at national and international multidisciplinary, peer-reviewed conferences and events, and invitations to present as a keynote at national conferences.
Start Year 2012
 
Description MSc students Mac - parents' views ENDED 
Organisation McMaster University
Department CanChild Centre for Childhood Disability Research
Country Canada 
Sector Academic/University 
PI Contribution Substantial intellectual contribution. A dataset for the project. The first version of the protocol for the project.
Collaborator Contribution Students to work on the project. Supervision of the students. Other resources (e.g. data base management).
Impact An agreement for contributions, working arrangements and student supervision. Agreement for the project delivery timeline. Poster presented by the students.
Start Year 2012
 
Description Physical activity in under5s - Cambridge 
Organisation University Medical Center Utrecht (UMC)
Country Netherlands 
Sector Academic/University 
PI Contribution A collaboration around the funding application
Collaborator Contribution Intellectual input and expertise about physical activity, change pathways to it, and potential intervention in the mainstream public health.
Impact A successful funding application and a subsequent protocol
Start Year 2016
 
Description Physical activity in under5s - Cambridge 
Organisation University of Cambridge
Country United Kingdom 
Sector Academic/University 
PI Contribution A collaboration around the funding application
Collaborator Contribution Intellectual input and expertise about physical activity, change pathways to it, and potential intervention in the mainstream public health.
Impact A successful funding application and a subsequent protocol
Start Year 2016
 
Description RITs (review and d-m tree) 
Organisation Leeds Community Healthcare NHS Trust
Department Children's Occupational Therapy
Country United Kingdom 
Sector Hospitals 
PI Contribution Substantial intellectual contribution.
Collaborator Contribution Substantial intellectual contribution.
Impact Symposium at an international conference, two manuscripts for peer-reviewed journals currently under way.
Start Year 2010
 
Description RITs (review and d-m tree) 
Organisation McMaster University
Department Offord Centre for Child Studies
Country Canada 
Sector Academic/University 
PI Contribution Substantial intellectual contribution.
Collaborator Contribution Substantial intellectual contribution.
Impact Symposium at an international conference, two manuscripts for peer-reviewed journals currently under way.
Start Year 2010
 
Description Systematic review of parents' beliefs about children's participation 
Organisation University Medical Center Utrecht (UMC)
Department De Hoogstraat Rehabilitation Centre
Country Netherlands 
Sector Hospitals 
PI Contribution Substantial intellectual contribution to the research idea and methods. Leadership for taking the work forward. Researcher time in conducting the work (identification and selection of the papers, retrieval of full papers, data analysis and synthesis). Leadership in dissemination.
Collaborator Contribution The collaborator has co-written the protocol, has provided researcher resources and has contributed intellectual input and expertise in planning of methods and dissemination.
Impact A protocol for a systematic review. Presentations at national and international conferences. This work is multidisciplinary, involving clinician researchers (allied health professionals, paeditricians), a movement scientist, a health psychologist and a qualitative research expert.
Start Year 2011
 
Description Systematic review: children's views of participation 
Organisation University of Queensland
Department School of Health and Rehabilitation Sciences
Country Australia 
Sector Academic/University 
PI Contribution Substantial intellectual contribution. Supervision of a PhD student.
Collaborator Contribution Substantial intellectual contribution. Supervision of a PhD student.
Impact A paper published in a peer reviewed journal (Powrie et al 2015).
Start Year 2010
 
Title Parent goal elicitation questionnaire 
Description An easy to use, piloted questionnaire to elicit parent goals at clinical encounters. The questionnaire is designed to enable a subsequent, efficient and effective delivery of further goal setting and action planning. 
IP Reference  
Protection Copyrighted (e.g. software)
Year Protection Granted 2014
Licensed No
Impact The questionnaire is in use at one NHS service, and has been requested for use at a second service.
 
Title Participation in Physical Play intervention 
Description An intervention consisting of four behaviour change techniques. designed to increase children's participation in physical play by changing parental behaviour. 
IP Reference  
Protection Copyrighted (e.g. software)
Year Protection Granted 2014
Licensed No
Impact None yet, requires further evaluation of effectiveness.
 
Title Training module for therapists (participation intervention) 
Description A training manual for enabling therapists to develop the competencies required to deliver the Participation in Physical Play intervention. 
IP Reference  
Protection Copyrighted (e.g. software)
Year Protection Granted 2014
Licensed No
Impact None yet. The intervention and the manual requires further evaluation of effectiveness.
 
Title Participation in Physical Play intervention 
Description Four behaviour change techniques to increase child participation in physical play by changing parent behaviour. Early feasibility and acceptability work completed, planning further modifications followed by a formal randomised pilot. 
Type Therapeutic Intervention - Psychological/Behavioural
Current Stage Of Development Refinement. Clinical
Year Development Stage Completed 2014
Development Status Actively seeking support
Impact This is the first systematically developed behaviour change intervention targeted at children with motor impairments. 
 
Description AHP CYP event 2009, 2010 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? Yes
Type Of Presentation Poster Presentation
Geographic Reach Regional
Primary Audience Health professionals
Results and Impact A poster presentation at the event:

Kolehmainen N, Francis J, Owen C, McKee L, Ramsay C. Participation in Physical Play Study: an MRC study to develop a theory- and evidence-based intervention. Allied Heath Professions in Children & Young People's Health Services (AHP CYP) Network Annual Meeting. Edinburgh, UK. October 2010 [Poster]

Kolehmainen N, Francis J, Duncan EAS, McKee L, Grant, A. Good Goals: supporting therapists to manage caseloads. Allied Health Professions in Children & Young People's Health Services (AHP CYP) Network launch event. Perth, UK. October 2009 [Poster]

Increased awareness by services on research into caseload management and shared goal setting.
Year(s) Of Engagement Activity 2009,2010
 
Description COT CYPF Research engagement talk 2013 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Health professionals
Results and Impact An oral presentation authored by Kolehmainen N, McAnuff J. and delivered by McAnuff, titled: Exciting opportunities for advancing occupational therapy practice: what role will you play? College of Occupational Therapists Children, Young People and Families annual conference. Chester, UK. November 2013

Greater visibility and knowledge for research among AHPs
Year(s) Of Engagement Activity 2013
 
Description Clinician Academic Blog 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A blog designed to inform, and bust myths, about clinical academic careers for allied health professionals, nurses and midwives. The audience is international across the World, and comments (some left on the blog, others on twitter, and some in person) indicate the readers change their views and actions as the result of reading the blog posts. Some readers also become contributors.
Year(s) Of Engagement Activity 2016,2017
URL https://clinicianacademic.wordpress.com
 
Description Facebook page, twitter 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact We run a facebook web page and actively engage on twitter.

Comments, suggestions, responses from a wide range of audience - and greater visibility to our work and the topic area.
Year(s) Of Engagement Activity 2012,2014
 
Description Family goal setting talks 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact We (including a parent collaborator) presented workshops to international audiences (n=600; n=100; and n=30) and national audience (n=25, n=25) of researchers, parents, practitioners and decision makers.

Gorter JW, Kay D, Kolehmainen N, Camden C. The F-words in childhood disability: Why is it so hard to do in the real world? International Cerebral Palsy Conference. Pisa, Italy. October 2012 [Workshop] A joint workshop with a parent

Gorter JW, Michelle Gentis, Kolehmainen N, Camden C. The F-words in childhood disability. NeuroDevNet Conference. Vancouver, Canada. May 2013 [Workshop]

McAnuff J, Kay D, Seidel A, Kolehmainen N. How can I "do" family-centred, shared goal-setting? An interactive workshop for service providers and parents. European Academy of Childhood Disability. Vienna, Austria. July 2014. [Workshop]

Kolehmainen N, Kay D, Seidel A, McAnuff J. How to do family-centred goal-setting in practice? North of England Collaborative Cerebral Palsy Annual Conference. Durham, UK. October 2014 [Two workshop, invited]

The presentations generated a lot of interest in and awareness of our work.

We have recently began to measure the impact of these workshops. Participants report, on average, 0.9/1 that they will change practice as a result of attending the workshop (e.g. listen to parents, ask parents questions, seek to name parent goals) and 6/7 that they will recommend the workshop to a colleague or a parent.
Year(s) Of Engagement Activity 2012,2013,2014
 
Description Feeback to sites MRC PPP 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Health professionals
Results and Impact The session sparked a lot of discussion; some people contacted me afterwards for information; some have since reported they have sought ways to change practice; and some have reported they have implemented changes in practice.

A clinical service has adopted new approaches to interventions. Clinicians have described greater focus on child participation in physical play.
Year(s) Of Engagement Activity 2013,2014
 
Description MRC advisory panels 2010-14 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Participants in your research and patient groups
Results and Impact I engage parent and child representatives as formal advisors in a project

A template for child friendly recruitment procedures and materials, data collection materials, and dissemination materials.
Parent friendly recruitment and data collection materials.
Both sets of these materials have been used in other research since then.
Year(s) Of Engagement Activity 2010,2011,2012,2014
 
Description McMaster Rounds 2010 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Geographic Reach Local
Primary Audience Health professionals
Results and Impact A presentation to approx 50 clinicians.

Kolehmainen N. Managing caseloads efficiently, equitably and with focus on the family. Chedoke Grand Rounds, McMaster Children's Hospital. Hamilton, Canada. April 2012 [Oral]

The feedback from clinicians indicated that they found the session informative and it resulted in being more knowledgable and confident in managing their caseloads.
Year(s) Of Engagement Activity 2012
 
Description Scottish Paediatric OT services 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Type Of Presentation Workshop Facilitator
Geographic Reach Regional
Primary Audience Health professionals
Results and Impact Typically 15-50 clinicians and managers attend these sessions. The topics and talks vary depending on the needs of the group and the research evidence to be disseminated at the time. The focus is on increasing evidence based practice through knowledge translation and dissemination activities. The methods used are active participation and techniques from implementation science targeted at the participants' skills and confidence. The long-term aim is to build their capacity.

2006: A successful funding application to CSO for a three-year research training fellowship

2009: A successful funding application to CSO for a 12-month research study to follow-on the project above

2009/10: A successful MRC Population Health Scientist Fellowship application

2012: A strategy statement from the Scottish managers network that outlines an aim for the Scottish clinical occupational therapy networks to become formal partners in the implementation of research evidence into practice.

2013: Increased awareness amongst clinicians about the need to begin to use research evidence. The services are clearer about their outcomes and interventions, and are beginning to develop ways to measure outcomes in routine practice.

Ongoing outputs: Invitations for further discussions, workshops, and more detailed advice. Interest amongst clinicians in being involved in research projects.
Year(s) Of Engagement Activity 2006,2007,2008,2012,2013
 
Description Study newsletters - Professionals 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Health professionals
Results and Impact Newsletters to healthcare professionals

Greater visibility to the research and the wider topic.
Year(s) Of Engagement Activity 2010,2011,2012,2013,2014