
Occupational Therapy and Duchenne Muscular Dystrophy
by Stone, Kate; Tester, Claire; Blakeney, Joy; Howarth, Alex; McAndrew, Hether; Traynor, Nicola; McCutcheon, Mary; Johnston, RuthBuy New
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Summary
Author Biography
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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