Occupational Therapy and Duchenne Muscular Dystrophy

by Stone, Kate; Tester, Claire; Blakeney, Joy; Howarth, Alex; McAndrew, Hether; Traynor, Nicola; McCutcheon, Mary; Johnston, Ruth

• ISBN13: 9780470510308
• ISBN10: 0470510307
• Edition: 1st
• Format: Paperback
• Copyright: 2007-10-15
• Publisher: WILEY

Summary

This is a practical guide for Occupational Therapists and others who provide services to people who have Duchenne muscular dystrophy. The goal of the book is to deepen the readers understanding of the support that occupational therapists can offer to families who are affected by this condition. Written by experienced occupational therapists with a special interest in Duchenne muscular dystrophy. The book will provide information and support to therapists who may be working in isolation, or who rarely work with this client group. It is for the experienced therapist as well as the student. Each chapter of this book gives a clear and comprehensive description of different aspects of occupational therapy assessments and interventions.

Author Biography

Joy Blakeney, Dip COT, Senior Practitioner, Paediatric Community Occupational Therapist, formerly of West Lothian Council Social Work Department.

Alex Howarth, BSc Occupational Therapy, Senior Paediatric Occupational Therapist, NHS Lothian University Hospitals Division.

Ruth Johnston, BSc (Hons) Occupational Therapy, Senior Occupational Therapist – Child Health, NHS Fife.

Heather McAndrew, BSc (Hons) Occupational Therapy, Senior Paediatric Occupational Therapist, NHS Borders.

Mary McCutcheon, Dip COT, Senior Paediatric Occupational Therapist, formerly of Ashcraig School, Glasgow.

Kate Stone, Dip COT, MSc (MedSci) in Palliative Care, Senior Practitioner, Paediatric Community Occupational Therapist, Inverclyde Council Social Work Services.

Claire Tester, Dip COT, PG Dip, AHP Consultant in Cancer for Scotland, Scottish Executive on secondment from the Children’s Hospice Association, Scotland (CHAS).

Nicola Traynor, BSc Occupational Therapy, Senior Paediatric Occupational Therapist, NHS Lothian University Hospitals Division.

Table of Contents

Contributors	p. xiii
Preface	p. xv
Acknowledgements	p. xvii
Duchenne Muscular Dystrophy: A Medical Overview	p. 1
Clinical Features	p. 2
Key Points	p. 3
The Occupational Therapy Process	p. 5
Introduction	p. 5
Definition of Occupational Therapy	p. 6
Assessment	p. 7
Planning	p. 15
Interventions	p. 15
Evaluation	p. 20
Key Points	p. 20
Case Study	p. 21
Study Questions	p. 22
The Psychosocial and Emotional Impact of Duchenne Muscular Dystrophy: Some Considerations	p. 23
Introduction	p. 23
Some Considerations at Different Ages and Stages	p. 25
Overnight Ventilation	p. 27
Grief and Loss	p. 27
Depression	p. 28
Impact on Parents	p. 29
Psychosocial Pointers to Consider	p. 30
Emotional Impact upon Therapist	p. 33
Key Points	p. 34
Case Study	p. 34
Study Questions	p. 35
From our Point of View: From Young Men with Duchenne Muscular Dystrophy, as Shared with Claire	p. 37
Aged 11 Years	p. 38
Aged 15 Years	p. 39
Aged 18 Years	p. 40
Aged 27 Years	p. 42
Study Questions	p. 43
Personal Activities of Daily Living	p. 45
Introduction	p. 45
General Upper-Limb Function for Self-Care Tasks	p. 46
Toileting	p. 47
Washing	p. 50
Grooming	p. 51
Dressing	p. 51
Easy Reacher	p. 52
Eating	p. 52
Sleeping	p. 54
Call System	p. 55
Sexual Health and Well-Being	p. 56
Key Points	p. 57
Case Study	p. 57
Study Questions	p. 59
Solution	p. 59
Seating	p. 61
Introduction	p. 61
Considerations	p. 61
Adaptations	p. 62
Tables/Trays	p. 65
Wheelchairs	p. 66
Environmental Considerations	p. 68
Funding	p. 69
Servicing	p. 70
Car Seating	p. 70
Key Points	p. 71
Case Study	p. 71
Study Questions	p. 72
Moving and Handling	p. 73
Introduction	p. 73
When Does Moving and Handling Need To Be Introduced?	p. 74
Needs of the Individual Requiring Assistance	p. 75
Individual Capability of the Handler	p. 76
Environmental Considerations	p. 77
Moving and Handling Equipment	p. 77
Key Points	p. 80
Case Study	p. 80
Study Questions	p. 80
Solution	p. 81
Occupational Therapy in Education	p. 83
Introduction	p. 83
Classroom Considerations	p. 84
Equipment	p. 86
Other Areas of the School	p. 89
Transition Planning	p. 92
Key Points	p. 94
Case Study	p. 95
Case Study Questions	p. 96
Solution	p. 96
Study Questions	p. 97
Learning and Behaviour Difficulties	p. 99
Introduction	p. 99
Developmental Profile	p. 99
Attention Deficit	p. 100
Dyspraxia	p. 101
Dyslexia	p. 102
Behaviour	p. 102
Social Skills and Self-Esteem	p. 104
Last Word	p. 105
Key Points	p. 106
Case Study	p. 106
Study Questions	p. 106
Leisure and Play	p. 107
Introduction	p. 107
Play	p. 108
Holidays	p. 109
Sports	p. 111
Hobbies	p. 112
Friends and Family	p. 113
Key Points	p. 113
Case Study	p. 114
Study Questions	p. 115
Community Care	p. 117
Introduction	p. 117
Community-Care Assessments	p. 117
Community-Care Plans	p. 120
Community-Care Services	p. 121
Implementing a Care Plan	p. 126
Monitoring and Reviewing	p. 127
Key Points	p. 127
Case Study	p. 128
Study Questions	p. 129
Housing Issues	p. 131
Initial Contact	p. 131
Legislation	p. 132
The Existing House	p. 132
Housing Options	p. 138
Emotional Issues	p. 140
Key Points	p. 141
Case Study	p. 142
Study Questions	p. 143
Social Needs: An Overview	p. 145
Introduction	p. 145
Checklist	p. 147
Comment	p. 149
Key Points	p. 150
Case Study	p. 150
Study Questions	p. 151
Employment	p. 153
Introduction	p. 153
Occupational Therapists and Work	p. 153
Careers Advice	p. 154
Disability Employment Advisers	p. 155
Employment Assessments	p. 155
Workstep	p. 155
New Deal for Disabled People	p. 156
Job Introduction Scheme	p. 156
Access to Work	p. 156
The Neuromuscular Centre	p. 157
Disability Discrimination Act 1995	p. 157
Employers	p. 158
Interviews	p. 159
Work Adjustments	p. 159
Discrimination	p. 159
Flexible Working for Carers	p. 160
Key Points	p. 160
Case Study	p. 160
Study Questions	p. 161
Transport	p. 163
Introduction	p. 163
Disability Living Allowance	p. 163
Motability Scheme	p. 164
Road Tax	p. 164
Parking Badges and Parking Bays	p. 164
Transport to Hospital	p. 165
Transport to Schools and Nurseries	p. 165
Transport to Further Education	p. 166
Transport to Employment	p. 166
Travel by Private Car	p. 166
Travel by Taxi	p. 168
Travel by Bus	p. 168
Travel by Ferries and Ships	p. 169
Travel by Train	p. 170
Travel by Underground	p. 171
Travel by Tram	p. 171
Travel by Aeroplane	p. 171
Concessionary Fares	p. 171
Wheelchairs	p. 173
Insurance	p. 174
Key Points	p. 174
Case Study	p. 174
Study Questions	p. 176
Bereavement and Anticipatory Grief	p. 177
Introduction	p. 177
Loss	p. 177
Bereavement	p. 178
Anticipatory Grief	p. 180
When Someone Dies	p. 180
In Summary	p. 181
Key Points	p. 181
Case Study	p. 181
Study Questions	p. 182
The Role of the Hospice	p. 183
Introduction	p. 183
Hospices and Palliative Care	p. 183
Role of the Hospice	p. 185
Summary	p. 190
Key Points	p. 191
Case Study	p. 191
Study Questions	p. 192
In Conversation with Occupational Therapists	p. 193
Introduction	p. 193
Key Points	p. 197
Study Questions	p. 197
The Future	p. 199
	p. 201
	p. 205
	p. 207
	p. 211
	p. 215
	p. 217
	p. 221
	p. 225
	p. 231
	p. 241
Further Reading for Depression and Anxiety	p. 241
Further Reading for Social Needs	p. 242
Further Resources	p. 242
Some Web Addresses for ADD	p. 243
Dyspraxia Assessments	p. 243
Dyslexia	p. 243
Social Skills Training	p. 244
Useful Websites	p. 244
Index	p. 247
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