Participation - Optimising Outcomes in Childhood-Onset Neurodisability

Enabling Participation provides a key reference work for health and education practitioners who wish to optimise outcomes for children, young people and families where there is an individual with a childhood onset neurodisability. By focusing on participation -- what is it, how to measure it and how to influence it - the book aims to support professionals to utilise the most recent developments in the field.
Written in five parts, the book provides the reader with knowledge about the concept of participation; detailed understanding of how varying contexts influence participation outcomes; how to measure participation as an outcome and as a process; how to intervene to promote participation outcomes; and future directions and challenges. Chapters provide diverse examples of evidence-based practices and are enriched by scenarios and vignettes to engage and challenge the reader to consider how participation in meaningful activities might be optimised for individuals and their families. The book's practical examples aim to facilitate knowledge transfer, clinical application and service planning for the future.

List of contents

Author Appointments ix Preface xiii
Acknowledgements vii
Part I Conceptual Issues in Participation 1
Vignette 1.1 Samuel's Magic Talking Machine!
Juan Bornman 3
1 The Nature of Participation
Christine Imms 5
Vignette 1.2 You Have to Walk and Talk to Go to School
(India) Pranay Jindal 12
2 Participation: Theoretical Underpinnings to Inform and Guide Interventions
Gillian King, Jenny Ziviani, Christine Imms 15
Vignette 2.1 Annie's in Charge of the Baking
(UK) Carolyn Dunford 25
3 Impact of Childhood Neurodisability on Participation
Claire Willis, Mats Granlund 27
Vignette 3.1 The Battle Hymn of the Tiger Mom
(Taiwan) Ai-Wen Hwang 35
Part II Contexts for Participation 39
4 Defining Contexts of Participation: A Conceptual Overview
Dido Green 41
Vignette 4.1 I Will Not Kill My Child
(Kenya) Joseph K Gona, Charles R Newton 46
5 Unpacking Contexts for Participation in Activities that Comprise Family Life: Self and Family
Jessica M Jarvis, Mary A Khetani 47
Vignette 5.1 The Mothers' Wishes and Dreams
(Iran) Farzaneh Yazdani 55
6 Participation and School Space: The Role of Environment in Inclusion
Wesley Imms, Benjamin Cleveland, Chris Bradbeer 57
7 Social Contexts: Communication, Leisure and Recreation Beata
Batorowicz Martine Smith 67
Vignette 7.1 Gift and the Snake that Wouldn't Go to Sleep
(South Africa) Juan Bornman 76
Vignette 7.2 In the Shadow of Rockets
(Israel) Orit Bart, Limor Rosenberg 78
Vignette 7.3 Reveal the Abilities
(Vietnam) Yen-Thanh Mac 80
8 Societal Influences on Participation
Dido Green, Bengt Westerberg 83
Vignette 8.1 Legislation is Not Enough
(USA) Michele Shusterman 93
Vignette 8.2 Starting School
(Australia) Loretta Sheppard, Nicole Cassar 95
9 Therapy as a Life Situation
Christine Imms 97
Vignette 9.1 Therapy Means Work, Not Play
(Romania) Liana Nagy, Stefania Bibolar 103
10 Involvement of Young People and Families in All Stages of Research: What, Why, and How?
Marjolijn Ketelaar, Dirk-Wouter Smits, Karen van Meeteren, Martijn Klem, Mattijs Alsem 105
Part III Measuring Participation 119
11 An Overview of Measurement Issues Related to Participation
Christine Imms 121
12 Measuring Participation as an Outcome: Attendance and Involvement
Brooke Adair, Annette Majnemer, Christine Imms 129
13 Measuring Participation as a Means: Participation as a Transactional System and a Process
Gillian King, Mats Granlund, Christine Imms 143
14 Measurement Challenges
Christine Imms, Jessica M Jarvis, Mary A Khetani, Bridget O'Connor 161
Vignette 14.1 Jack in the Box
(Australia) Bridget O'Connor 170
Part IV Participation Interventions 173
15 Enabling Participation: Innovations and Advancements
Dido Green 175
16 Providing Opportunities for Participation: A Focus on the Environment
Dana Anaby 179
17 Enhancing Participation Outcomes in Community Contexts
Nora Shields, Ai-Wen Hwang, Jessica Kramer 187
Vignette 17.1 School Lunches in Japan
(Japan) Manabu Saito, Motohide Miyahara 201
18 Participatory Interventions: Interventions Situated in Meaningful Contexts Citlali
Lopez-Ortis Reidun, Jahnsen Dido Green 205
Vignette 18.1 From Overcoming to Enjoying
(Vietnam) Yen-Thanh Mac 217
Part V Future Challenges 219
19 Childhood Disability and Participation in the 21st Century
Peter Rosenbaum 221
Vignette 19.1 A Newcomerto Canada
(Canada) Dana Anaby 227
20 Evolution of Needs and Expectations: The Transformation of Disabled Individuals and Healthcare Providers Bernard Dan, Karine Pelc, Michel Sylin 229
Vignette 20.1 Ken and the Natural Disaster
(Japan) Naru Fukuch,i Motohide Miyahara 236
Vignette 20.2 My Child is Possessed by Evil Spirits
(Kenya) Joseph K Gona, Charles R Newton 238
21 Cultural and Contextual Challenges in Resource-Poor Countries: The Case of Sub-Saharan Africa Joseph K Gona Karen Bunning, Charles R Newton 239
Vignette 21.1 When Ben Smiled
(South Africa) Juan Bornman 245
22 Looking to the Future
Dido Green, Christine Imms 247
Index 251

About the author

Christine Imms is a Professor of Occupational Therapy and was the inaugural National Head of School of Allied Health (2011-2018) and co-founding Director of the Centre for Disability and Development Research at the Australian Catholic University. Christine's clinical experience led to a long-standing interest in understanding the participation outcomes of those with childhood-onset neurodisability. Her research has predominantly involved children and young people with cerebral palsy, and been focused on describing patterns of participation, developing measures and designing and testing interventions. Her research track record includes over 100 peer reviewed publications, more than $11.3million (AUD) in grant income, and supervision of 30 research students.
Dido Green gained extensive clinical experience as an Occupational Therapist specializing in paediatric neurodisability, with an MSc in Clinical Neuroscience and PhD in Motor Learning. Research interests focus on translational medicine emphasizing an ecological approach to understanding challenges to performance and participation in children and young people with neurodisability. Dido has developed child-centred intervention protocols addressing limitations to activity capacity and participatory outcomes. Several clinical trials have focussed on meaningful outcomes for children and their families. These projects and clinical experience have highlighted the inter-relationship between multiple person, environment and activity factors and need to look beyond diagnostic labels to optimise participatory outcomes. Her research track record includes over 100 peer reviewed publications, more than £5million (GBP) in grant income, and supervision of 15 research students.

Product details

• Authors: Dido Green, C Imms, Christine Imms, Christine (Australian Catholic University) G Imms, Christine (School of Occupational Therapy Imms, Christine Green Imms
• Assisted by: Dido (Brunel University London Green (Editor), Christine (Australian Catholic University) Imms (Editor)
• Publisher: MacKeith Press
• Languages: English
• Product format: Hardback
• Released: 31.01.2020
• EAN: 9781911612162
• ISBN: 978-1-911612-16-2
• No. of pages: 288
• Series: Clinics in Developmental Medicine; Clinics in Developmental Medic
• Subjects: Natural sciences, medicine, IT, technology > Medicine > Clinical medicine; MEDICAL / Neurology, Medical / Nursing