This unique book focuses on enabling children and young people with neurodisability to participate in the varied life situations that form their personal, familial and cultural worlds.
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.
The only book to focus on participation in children with childhood onset neurodisability
This book brings together highly expert contributors, experienced in the field and up to date with current conceptual frameworks and research.
Vignettes, scenarios and real-life stories are used to challenge assumptions, support application to practice and drive future thinking.
By providing an international perspective on participation, the book addresses issues influencing engagement in meaningful activities across contexts and cultures.
This book will be of interest to practitioners including medical and allied health professionals, particularly: Physiotherapists, Occupational Therapists, Speech and Language Therapists, Psychologists and Neuropsychologists, Paediatric Neurologists, Paediatric Neurodisability specialists and specialist Nurses.
Additionally, Movement and Rehabilitation scientists as well as those working in Special Educational Needs and Social Care environments will find relevant information to support their work and inter-disciplinary practice and impact on policy. Other stakeholders, including consumers (parents and those with lived experience of childhood onset disability) and policy makers, may find information of value to their planning.
Video about the book
Watch the editors Christine Imms and Dido Green discuss the book below:
Clinics in Developmental Medicine
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.
Front matter i Contents
ii Author appointments
iv Preface – What this book is about Imms & Green
PART I: Conceptual issues in participation
I Vignette 1.1 Samuel’s magic talking machine (Sth Africa) Bornman
1 The nature of participation Imms
Vignette 1.2 You have to walk and talk to go to school (India) Jindal
2 Participation: Theoretical underpinnings to inform and guide intervention King, Ziviani & Imms
Vignette 2.1 Annie’s in charge of the baking (UK) Dunford
3 Impact of childhood neurodisability on participation Willis & Granlund
Vignette 3.1 The battle hymn of the Tiger Mom (Taiwan) Huang
PART II: Contexts for participation
II 4 Defining contexts of participation: A conceptual overview Green
Vignette 4.1 I will not kill my child (Kenya) Gona & Newton
5 Unpacking contexts for participation in activities that comprise family life Jarvis & Khetani
Vignette 5.1 The mother’s wishes and dreams (Iran) Yazdani
6 Participation and school space: The role of environment in inclusion Imms, Cleveland, Bradbeer
7 Social contexts: Communication, leisure and recreation Batorowicz & Smith
Vignette 7.1 Gift and the snake that wouldn’t go to sleep (Sth Africa) Bornman
Vignette 7.2 In the shadow of rockets (Israel) Bart
Vignette 7.3 Reveal the abilities (Vietnam) Mac
8 Societal influences on participation Green & Westerberg
Vignette 8.1 Legislation is not enough (USA) Shusterman
Vignette 8.2 Starting school (Australia) Sheppard & Cassar
9 Therapy as a life situation Imms
Vignette 9.1 Therapy means work, not play (Rumania) Nagy & Bibolar
10 Involvement of young people and families in all stages of research: What, Why, and How? Ketalaar, Smits, van Meeteren, Klem, Alsem
PART III: Measuring participation
III 11 An overview of measurement issues related to participation Imms
12 Measuring participation as an outcome: attendance and involvement Adair, Majnemer & Imms
13 Measuring participation as means: Participation as a transactional system and a process King, Granlund & Imms
14 Measurement challenges Imms, Jarvis, Khetani & O’Connor
Vignette 14.1 Jack in the box (Australia) O’Connor
PART IV: Participation interventions
IV 15 Enabling participation: Innovations and advancements Green
16 Providing opportunities for participation: A focus on environment Anaby
17 Enhancing participation outcomes in community contexts Shields, Hwang & Kramer
Vignette 17.1 The school lunch in Japan Saito & Miyahara
18 Participatory interventions: interventions situated in meaningful contexts Lopez-Ortis, Jansen & Green
Vignette 18.1 From overcoming to enjoying (Vietnam) Mac
PART V: Future challenges
V 19 Childhood disability and participation in the 21st Century Rosenbaum
Vignette 19.1 A newcomer to Canada (Canada) Anaby
20 Evolution of needs and expectations: the transformation of disabled individuals and healthcare providers Dan, Pelc & Sylin
Vignette 20.1 Ken and the natural disaster (Japan) Fukuchi & Miyahara
Vignette 20.2 My child is possessed by evil spirits (Kenya) Gona & Newton
21 Cultural and contextual challenges in resource poor countries: the case of Sub-Saharan Africa Gona, Bunning & Newton
Vignette 21.1 When Ben smiled… (Sth Africa) Bornman
22 Looking to the future Green & Imms
'This reference book gives a culturally based approach to participation in neurodevelopmental disabilities. It covers how participation in society is defined at various ages, measurement of participation, advancements in the field, along with future challenges. The purpose of this book is to gather experiences and knowledge from around the world, and to highlight experiential knowledge in a cross-cultural fashion. This is a worthy objective in that the book follows up on goals established from the ICF criteria 20 years ago. It meets these goals in an approachable manner making it more accessible via multicultural understanding. I felt that the best part of the book was cultural influences on pediatric neurodevelopmental disability.'
Ben Katholi, MD, Shirley Ryan AbilityLab
'The publication of the International Classification of Functioning, Disability and Health led to an international shift in the health care for those with disabilities. Moving from emphasizing assessments and interventions to ‘fix’ body functions and structures, we are in the position today where successful participation in everyday life is seen as the ultimate outcome of health services for those in need of special support. Each part of the book contains several vignettes. These personal stories are contributions from authors across the world. The intent of these vignettes is to provide context and to point the way towards future actions. They help make this book easy-to read but are still thought-provoking enough to be useful for researchers and healthcare practitioners. Also, by adding a summary of key ideas, the reader can easily grasp the main thrust of the chapters.'
Marieke Coussens | Dominique Van de Velde, Developmental Medicine & Child Neurology, June 2020
Participation – Chapter 1: The Nature of Participation (free ebook) - £0