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Judi Edmans, PhD, MPhil, DipCOT, FCOT is a Senior Research Fellow in the Division of Rehabilitation and Ageing at the University of Nottingham. She has been qualified for over 35 years, has worked mainly in stroke both in clinical practice and research and is the editor of the book Occupational Therapy and Stroke.
List of contributors, x
Academic foreword, xi
Service user foreword, xii
Preface, xiii
Acknowledgements, xiv
1 Introduction, 1
1.1 Economic impact of long?]term neurological conditions, 1
1.2 Definition of long?]term neurological conditions, 2
1.3 International Classification of Functioning, Disability and Health, 2
1.4 Huntington's disease, 4
1.5 Motor neurone disease, 9
1.6 Multiple sclerosis, 13
1.7 Parkinson's, 18
1.8 Self?]evaluation questions, 22
References, 22
2 Delivering good quality, safe and effective care, 24
2.1 Introduction, 24
2.2 The strategic context, 24
2.3 Evidence?]based practice, 27
2.4 Clinical guidelines, 33
2.5 Practice guidance, 33
2.6 Client expertise in evidence?]based practice, 35
2.7 Quality improvement, 36
2.8 Health economic evaluation, 39
2.9 Professional standards of practice, 40
2.10 CPD and lifelong learning, 40
2.11 Self?]evaluation questions, 42
References, 43
3 Person?]centredness and long?]term neurological conditions, 46
3.1 Introduction, 46
3.2 Person?]centredness, 46
3.3 Client?]centred practice, 48
3.4 Self?]management, 55
3.5 Co-production, 57
3.6 Evaluating your practice, 58
3.7 Self-evaluation questions, 59
References, 60
4 Theoretical basis, 63
4.1 Introduction, 63
4.2 Definitions of occupational therapy, 63
4.3 Central philosophy of occupational therapy, 65
4.4 Core professional reasoning skills, 65
4.5 Conceptual models of occupational therapy practice, 69
4.6 Frames of reference, 78
4.7 Context?]dependent practice skills, 81
4.8 Self?]evaluation questions, 83
References, 83
5 Occupation and long?]term neurological conditions, 86
5.1 Introduction, 86
5.2 Defining occupation, 86
5.3 Occupational patterns, 87
5.4 Doing, being, becoming and belonging, 88
5.5 Occupational dysfunction, 93
5.6 Occupational adaptation, 96
5.7 Defining occupational goals, 98
5.8 Self?]evaluation questions, 99
References, 99
6 Identifying occupational performance enablers and deficits, 101
6.1 Introduction, 101
6.2 What is measurement?, 101
6.3 What are occupational therapy outcomes?, 102
6.4 Selecting the right measure, 103
6.5 Commonly used measures in neurological rehabilitation, 106
6.6 Disease?]specific measures, 111
6.7 Self?]evaluation questions, 118
References, 118
7 Occupational therapy intervention, 122
7.1 Introduction, 122
7.2 Activities of daily living, 123
7.3 Fatigue management, 124
7.4 Cognitive rehabilitation, 126
7.5 Anxiety management, 129
7.6 Falls management, 135
7.7 Pain management, 137
7.8 Managing tremor, 140
7.9 Sleep, 143
7.10 Sexual relationships and intimacy, 144
7.11 Self evaluation questions, 147
References, 147
8 Using technology to support participation, 150
8.1 Introduction, 150
8.2 Environmental characteristics and occupational performance, 150
8.3 Environmental adaptations, 151
8.4 Assistive technology, 152
8.5 Assistive devices, 152
8.6 Housing adaptations, 154
8.7 Seating and postural management, 156
8.8 Management of posture and positioning in sitting, 158
8.9 Management of posture and positioning in lying, 160
8.10 Splinting, 162
8.11 Electronic assistive technology, 163
8.12 Self?]evaluation questions, 168
References, 168
9 Living with a long?]term neurological condition, 171
9.1 Introduction, 171
9.2 Transitions theory, 171
9.3 Illness experiences, 172
9.4 Rehabilitation and recovery, 173
9.5 Lifespan transitions, 174
9.6 Social and cultural transitions, 175
9.7 Caregiving, 183
9.8 Psychosocial adjustment, 185
9.9 Self?]evaluation questions, 189
References, 189
10 Planning for the future, 194
10.1 Introduction, 194
10.2 Disease progression, 194
10.3 The nature of occupation in death and dying, 197
10.4 Facilitation of meaning, quality of life and well?]being, 198
10.5 Spirituality, 198
10.6 Therapeutic use of self, 199
10.7 Advance care planning, 200
10.8 Conclusion, 209
10.9 Self?]evaluation questions, 209
References, 210
Index, 212
It is estimated that 10 million people in the United Kingdom live with some form of neurological condition that impacts on their everyday lives (Department of Health [DoH], 2005). Neurological conditions account for one in five emergency hospital admissions, one in eight general practice consultations and a high proportion of severe and progressive disability in the population (Association of British Neurologists, 2003). As many as 350?000 people in the United Kingdom need help with activities of daily living because of a neurological condition and 850?000 people care for someone with a neurological condition (DoH, 2005). Due to their devastating impact and their generally progressive nature, neurological conditions are considered as long-term affecting individuals throughout their life span.
Occupational therapy is defined as 'a client-centred health profession concerned with promoting health and well-being through occupation enabling people to participate in everyday life' (World Federation of Occupational Therapists, 2011). Occupational therapy practice focuses on enabling individuals to modify and adapt elements of their roles, occupations or environments to support occupational participation in response to changes within their lives. Occupational therapists have a key role to play in supporting people living with a long-term neurological condition to manage a life of unpredictability and uncertainty. This requires a complex combination of knowledge and skills to address the physical, psychological, cognitive and emotional needs of people together with a broad range of assessments and interventions.
The DoH (2005) describes 'long-term neurological conditions' as
a range of conditions affecting the brain or spinal cord which occur through a variety of mechanisms which include the following:
This book specifically focuses on the following progressive neurological conditions:
Whilst there is an abundance of literature relating to each of these medical conditions the primary aim of this book is to place this knowledge and understanding within the context of occupational therapy practice. In order to fully understand the holistic needs of their clients occupational therapists are required to develop knowledge of the underlying pathology of each of these neurological conditions. However this understanding from a medical perspective should not be assumed to represent a medical model of care with an emphasis on symptomatic management. Throughout this book the focus is on delivering person-centred models of practice which support the complexity of the needs of people with neurological conditions from an occupational perspective.
The International Classification of Functioning, Disability and Health (ICF) offers a conceptual basis for the definition and measurement of health and disability (World Health Organisation [WHO], 2002). Developed within a biopsychosocial model, ICF views disability and functioning as outcomes of interactions between health conditions (diseases, disorders and injuries) and contextual factors, as shown in Figure 1.1. Amongst contextual factors are external environmental factors (e.g., social attitudes, architectural characteristics, legal and social structures) and internal factors which include gender, age, coping styles, social background, past and current experience, character and other factors that influence how disability is experienced by the individual (WHO, 2002).
Figure 1.1 Model of disability that is the basis for ICF.
(Source: WHO, 2002, p. 9. Reproduced with permission of World Health Organisation.)
Within this framework ICF defines three levels of human functioning: functioning at the level of body or body part (impairment), the whole person (activity limitations) and the whole person in a social context (participation restrictions). The formal definitions of these components of ICF are provided in Box 1.1 (WHO, 2002).
Body functions are physiological functions of body systems (including psychological functions).
Body structures are anatomical parts of the body such as organs, limbs and their components.
Impairments are problems in body function or structure such as significant deviation or loss.
Activity is the execution of a task or action by an individual.
Participation is involvement in a life situation.
Activity limitations are difficulties an individual may experience in involvement in life situations.
Participation restrictions are problems an individual may experience in involvement in life situations.
Environmental factors make up the physical, social and attitudinal environment in which people live and conduct their lives.
Source: WHO (2002, p. 10). Reproduced with permission of World Health Organisation.
The remainder of this chapter presents each of the four neurological conditions in relation to body functions, body structures and impairments, highlighting the differences and similarities of each condition. Subsequent chapters explore the wider implications for activity and participation.
HD is a rare disease, affecting an estimated 7-10 people per 100?000 or somewhere in the region of between 4200 and 6000 people in the United Kingdom (Quarrell, 2008). The onset of the disease is insidious and the age of onset depends on a number of different factors. Most people develop the condition between the ages of 30 and 50 years, but the disease can appear in all age groups (Nance et al., 2013). The HD gene is dominant, which means that each child of a parent with HD has a 50% chance of inheriting the disease and is said to be 'at-risk'. Males and females have the same risk of inheriting the disease. HD occurs in all races (Nance et al., 2013).
There is currently no cure or treatment which can halt, slow or reverse the progression of the disease (Nance et al., 2013) and people with HD tend to die, on average, between 15 and 16 years after the onset of symptoms (Quarrell, 2008). People don't die from HD itself, but they die from complications such as choking, heart failure, and infection or aspiration pneumonia (Nance et al., 2013).
HD is a hereditary neurodegenerative genetic disorder caused by an expansion of a repeating CAG triplet series in the huntingtin gene on chromosome 4, which results in a protein with an abnormally long polyglutamine sequence (Nance et al., 2013).
HD causes cells in the brain to die, specifically the caudate and the putamen and, as the disease progresses, the cerebral cortex. These organic changes lead to cognitive, motor and psychiatric changes that have a devastating impact on the individual. As the brain cells die, a person with HD becomes less able to control their movements, recall events, make decisions and control their emotions (Nance et al., 2013).
Symptoms may include minor involuntary movements, subtle loss of coordination, difficulty thinking through complex problems, depression, irritability, or disinhibition (Nance et al., 2013). Early symptoms of the disease often include subtle cognitive changes including the following:
Chorea may be prominent, and people with HD have increasing difficulty with voluntary motor tasks. There may be issues with swallowing, balance, falls and weight loss. Problem solving becomes more difficult due to difficulties sequencing, organising or prioritising information (Nance et al., 2013).
The initial physical symptoms will gradually develop into more obvious involuntary movements such as jerking and twitching of the head, neck and arms and legs. These movements may interfere...
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