Prevalence of stroke in the UK
The population of the UK and elsewhere is living longer. The average lifespan since 1960 in England and Wales has increased by 10 years for men and 8 years for women.1 One in six members of the UK population were aged over 65 years at the time of the 2011 census,2 and the over-85-year-old age bracket is the fastest growing sector.3 It is predicted that, by 2031, 22% of the population will be over 65 years old.4 The incidence of stroke increases significantly with age.5 According to British Heart Foundation statistics released in 2012, there are approximately 152,000 strokes in the UK5 and approximately 65,000 people experience their first transient ischaemic attack (TIA) each year.6
Survival rates following stroke have improved significantly over the last 20 years because of medical advances in acute care and increased public awareness of stroke symptoms. However, owing to the decreasing levels of stroke mortality there is a significant rise in the number of people living with stroke-related disabilities.
In 2012, it was estimated that there are 1.2 million stroke survivors living in the UK.5 Stroke represents the third most common cause of disability-adjusted life-years worldwide.7–9 The disabilities experienced as a result of stroke are complex,10 potentially involving a multitude of physical and mental impairments, including difficulties as detailed in Box 1.
Physical and mental impairments Arm and/or leg movement.
Approximately 10% of patients are discharged from hospital directly to a long-term care facility,11,12 and 25% of stroke survivors require long-term institutional care as a result of the brain injury.13 Clearly, clinically effective and cost-effective health technologies designed to ameliorate disability and improve quality of life for a growing population of older stroke survivors are needed.
Long-term care descriptors
In England, at the end of 2012 there were 4675 care homes with nursing facilities (218,387 beds) registered with the Care Quality Commission, and 12,917 residential care homes without nursing facilities (245,942 beds).14 The distinction between homes that provide nursing care and those that offer only residential care is dependent on the skills of the care home staff, and not necessarily associated with the level of disability of the residents. Homes that provide nursing care employ qualified nurses, whereas homes that provide residential care are not required to employ qualified health professionals. It is estimated that between 20% and 45% of all people newly admitted to residential care settings in the UK have stroke-related disabilities.11,15–17 The prevalence of stroke and dementia in the older population suggests a huge demand for long-term care facilities, and the provision of effective health-care technologies within those facilities, both now and in the future.18
Health-care services within care home settings
Older people with complex health conditions are the main users of health and social care services.19 From 1990 to 2010 in the UK there was a significant shift in long-term care for older adults away from geriatric hospitals, and more towards care homes.20 Long-stay hospital wards benefit from established auditing systems which, prior to recent developments in social care provision, care homes did not. As a consequence, patients living in care homes have been described as ‘living on the margins of care’.21 During this period there have been a number of initiatives, devised by government, in association with the Royal College of Physicians (RCP), that have introduced care standards to regulate, and improve, health care for the older population, and develop a more integrated service in care homes.3,19,20,22–24
The National Service Framework for old age presented care standards with three themes: dignity in care; joined-up care; and healthy ageing – promoting exercise and activity, independence, well-being and choice.19 The joined-up care theme outlined reforms to ensure a comprehensive health assessment is conducted prior to admission to a long-term residential facility, to establish individual health-care needs.3 The National Service Framework listed standards for four main components central to the development of an integrated stroke service in older age: prevention, immediate care, early and continuing rehabilitation, and long-term support.3,19
In addition to the National Service Framework, the RCP produced a series of guidelines to enhance the health of older adults in long-term care.20 A component within these guidelines focused on ‘overcoming disability’ from a therapeutic perspective.20 The guidelines highlighted the importance of the care home environment, and the use of aids, equipment and adaptations to address disability and improve function in long-term care facilities. The philosophy behind these guidelines was that small increases in functional capacity of older people are deemed to impact positively on quality of life and cost of care.20 The section on ‘overcoming disability’ concentrates on providing access to resources to improve or maintain functioning in primary activities of daily living (ADL).
For the purposes of this trial, primary ADL are referred to as personal or self-care ADL. Personal ADL are defined as:
These initiatives have instigated considerable progress in raising standards, increasing awareness of health-care issues in older age and lessening the long-standing stigma associated with this population. However, despite this progress, care services for older adults with high support needs, such as stroke survivors residing in care homes, are notoriously inconsistent, and most often dictated by financial constraints at a regional level.25
More residents with a higher level of dependency and complex care needs are being admitted to care homes than ever before.26 For residents with high levels of support needs, there is more of an emphasis on providing specialist care for a short period towards the end of life to ease suffering and promote dignity throughout.16 It is critical to design health services with the needs, circumstances and preferences of the service users in mind.19,27 Establishing an evidence base for clinically efficacious and cost-effective therapeutic health technologies, suitable for use by the NHS in care homes to promote dignity, joined-up care and increased independence is a research priority.
Occupational therapy
Occupational therapy is the therapeutic intervention that promotes health by enhancing the individual’s skills, competence and satisfaction in daily occupations . . . to act on the environment and successfully adapt to its challenges.
Yerxa et al.28 p. 6
Activity is essential to health and well-being.29 In the re-drafted report published by the World Health Organization entitled International Classification of Functioning, Disability and Health (ICF),30 the term ‘disability’ is described in reference to the interaction between an individual’s impairments, activity limitations, participation restrictions and their environment. This definition focuses on the individual’s capacity to engage in functional activity.
Occupational therapists aim to improve the quality of life of their patients by attempting to augment functional activity and increase their capacity to engage in personal ADL.31 A philosophy of occupational therapy (OT) is that the intervention is most effective when it is integrated into the context of the individual.31 OT typically applies a patient-centred goal-setting approach, so that the therapy package is individualised for each patient, and the goals of therapy are continually reviewed in relation to progress.32 The treatment programme is planned around the patient’s goals. The patient is given as much autonomy as possible in maintaining or improving his or her own quality of life. Task-specific training, guidance and supervision is given to reinforce safe and effective practice of personal ADL.33 Where necessary, training involves the use of adaptive equipment (e.g. adapted cutlery or walking aids) to facilitate an increase in capability, ameliorate activity limitations and provide therapeutic aid. Enabling modifications, tailored to individual needs, can be applied to the environment to promote safe and effective practice of ADL (e.g. the installation of bed levers, grab rails or a raised toilet seat). Particular attention is given to communication, to engender an informal atmosphere that will enable the exchange of ideas, and the offering of peer support. In summary:
Occupational therapy is a complex intervention. Practice includes skilled observation; the use of standardised and non-standardised assessments of the biological, psychiatric, social, and environmental determinants of health; clarification of the problem; formulation of individualised treatment goals; and the delivery of a set of individualised problem solving interventions.34
Historically, OT services within the NHS have been situated in acute hospital services; however, nowadays therapists also operate as a part of local authority social care services throughout the UK. The ‘joined-up care’ initiative has helped instigate service reform to better suit the needs of users in the local community.3,19 A review of the effectiveness of OT administered by local authority social services to older people at home has shown high satisfaction levels for the service.34 It has also been suggested that the provision of adapted equipment to reduce dependency on additional services may be cost-effective.35
Occupational therapy for stroke rehabilitation
The National Institute for Health and Care Excellence guidelines for stroke rehabilitation recommend that OT should be provided for people after stroke to help ameliorate difficulties with personal ADL.36 The guidelines also stipulate that stroke survivors should be monitored regularly by occupational therapists with core competencies in this area.36
Occupational therapy delivered to stroke survivors in their own homes has good evidence of benefit.34,37 A systematic review and meta-analysis were conducted by members of the research team to determine whether or not OT, focused on promoting increased activity and independence in performing personal ADL, improves recovery for stroke survivors.34 Analysis of nine trials (1258 participants) found that OT increased personal ADL scores, measured using the Barthel Index of Activities of Daily Living (BI). The standardised mean difference was 0.18 [95% confidence interval (CI) 0.04 to 0.32; p = 0.01] in favour of OT, compared with receiving no intervention or usual care. This equates to a single-point difference (5%) on the BI (20-point scale). Furthermore, for every 100 people who received OT after a stroke, 11 (95% CI 7 to 30) would be spared a poor outcome, defined as death or deterioration in abilities to perform ADL [odds ratio (OR) 0.67, 95% CI 0.51 to 0.87; p = 0.003].34 The review concluded that targeted OT should be available to everyone who has had a stroke, to reduce disability and increase independence in performing personal ADL.
Although the systematic review concluded that OT is effective when administered in patients’ homes,34 the clinical efficacy and cost-effectiveness of OT administered to stroke survivors living in a care home setting was not known. Differentiating stroke survivors who live in their own homes from stroke survivors residing in care homes is important. Typically, stroke survivors living in care homes have increased physical and mental limitations as a result of their brain injury, and their functional capacity to perform personal ADL is often restricted. For instance, 78% of residents in a care home have cognitive impairment, 76% need some form of assistance with ambulation and 71% are incontinent.17 Reduced functional capacity may limit stroke survivors’ ability to engage in, and respond to therapy. As a result, generalisation of results from community studies to care home settings should be treated with caution.
Occupational therapy for care home residents with stroke-related disabilities
In the Netherlands, 93% of care home residents regularly receive some form of OT;38 however, in the UK it is available to as few as 3–6% of residents.39,40 An audit of over 1000 residents in England found that none had been assessed for OT.41 The most recent stroke guidelines recommend reducing nationwide variability in rehabilitative care after stroke,42 including the care home setting.43 Owing to the number of patients transferring directly from hospital to a care home environment following a stroke, as opposed to returning home,13,44 it is necessary for rehabilitation and social care services to achieve equivalent standards, especially for those patients with increased dependence.
Following admission to a care home, stroke survivors’ health state typically follows a downward trajectory. Observational data suggest that care home residents spend 97% of their daytime hours sitting inactive with eyes open or eyes closed.45 Inactivity in older care home residents can pose further health risks, such as pressure ulcers, joint contractures, pain, incontinence and low mood.46 The provision of OT as a means of augmenting levels of functional activity may reduce the likelihood of these further health conditions and reduce unnecessary dependence.
Current evidence evaluating the efficacy of OT across the whole care home population, not restricted to residents who have experienced a stroke, has shown conflicting results.47,48–51 The evidence relating specifically to stroke survivors living in care homes is extremely limited. A systematic review considering the efficacy of providing OT to stroke survivors living in care homes was conducted by our research team.52 Literature searches were performed within: MEDLINE, EMBASE, the Cumulative Index to Nursing and Allied Health Literature, the Cochrane Central Register of Controlled Trials, six trials registers and 10 additional bibliographic databases (all searches ended in September 2012).52 The review process revealed only one relevant randomised controlled trial (RCT) conducted to date; this was the OT intervention for residents with stroke living in UK Care Homes (OTCH) cluster randomised Phase II pilot trial discussed in full in Chapter 2. No firm conclusions of efficacy of OT provided to care home residents with stroke-related disabilities could be drawn from the systematic review.52
Depression in stroke survivors residing in care homes
Symptoms of depression are common in older residents residing in care homes,53–57 and very common following stroke.58 Experiences of depression following stroke may be directly attributable to the brain injury or an adverse psychological response to trauma.58 Communication problems following stroke limit residents’ ability to express feelings of low mood and may be difficult to recognise by unqualified members of staff.59 Presence of depression in care home residents is associated with poor outcomes and increased mortality.57 Symptoms of depression include:
losing interest in everyday activities
finding it difficult to concentrate or make decisions
feeling worthless, guilty, helpless, hopeless or in despair
A previous study, assessing the feasibility of a trial evaluating the effectiveness of an OT programme at reducing levels of depression in a care home population, found no significant effects.60 However, the trial was not powered to evaluate the efficacy of OT in alleviating in symptoms of depression. The OTCH trial sought to assess the influence of OT on levels of depression as a secondary outcome measure to the performance of personal ADL.
Assessing health-related quality of life in stroke survivors residing in care homes
A central philosophy underpinning OT is that the intervention involves engaging in activities that hold meaning for the individual. The personalised meaning behind the activities is thought to help promote increased quality of life for that individual.31 Health-related quality of life (HRQoL), assessed according to a number of physical and emotional dimensions of interest,61 can be used to measure the perceived impact of a chronic disease.62 The purpose of including a measure of HRQoL was to provide an additional multidimensional scale that considers both physical and emotional functioning to evaluate potential effects of the OT intervention not captured by the BI.
Training for care home staff
In the UK, the majority of care for older stroke survivors living in long-term care institutions is provided by the staff of those institutions.63 During the OTCH Phase I stage, a number of care home staff in one area of the UK were interviewed.41 From the staff responses, it was evident that none of the care homes was providing aids and appliances effective in reducing physical decline, that is there was a difference between policy and practice. It is therefore doubtful whether or not the RCP guidelines on ‘overcoming disability’ could be universally implementable across the UK.20 The guidelines highlight the importance of the care home environment and the use of aids, equipment and adaptations to address disability and improve function in long-term care facilities. The results from the Phase I interviews were a strong indication that any development of health services in care homes needs to directly involve the staff who provide the majority of residents’ care.
A later report highlighted several aspects of staff involvement deemed fundamental in establishing a more positive culture in care homes.64 It promoted the importance of staff training to move away from the prevalent model of task-based care system of doing things ‘for’ residents, and more towards a system with a shared commitment (‘doing with’) that includes emotional care. Consequently, the involvement of care home staff in the evaluation of OTCH was regarded as integral, in order to increase awareness of the broad spectrum of stroke-related disabilities and to provide continuity in care practices between staff and visiting therapists.
Aims and objectives of the Occupational Therapy intervention for residents with stroke living in UK Care Homes trial
Disabilities affecting ADL are commonplace for stroke survivors living in UK care homes, and yet access to rehabilitation services, particularly OT, is very restricted. The purpose of the study was to conduct a Phase III RCT to evaluate the effects of a targeted 3-month course of OT (with provision of adaptive equipment, minor environmental adaptations and staff education) for people with stroke sequelae living in care homes.
The primary outcome measure assessed was the capacity to perform personal ADL.
The secondary outcome measures assessed were mobility, depression and health-related quality of life.
An economic evaluation of the intervention was conducted in parallel with the evaluation of clinical efficacy as part of the health technology assessment. Providing an OT service to stroke survivors resident in care homes was compared against usual care. The trial aimed to evaluate whether or not there is sufficient evidence to advocate the routine implementation of OT for all stroke survivors living in care homes.
