Rehabilitation and recovery – principles of rehabilitation

This section addresses the core principles of rehabilitation and its delivery.  All subsequent sections of this chapter should be read keeping these overarching principles and recommendations in mind. It is acknowledged that rehabilitation, recovery, and adjustment are different albeit linked concepts that may take place over differing time frames and require differing levels of support. Where necessary and appropriate, community rehabilitation may be delivered by combined stroke and neuro-therapy teams; however, these teams should have the skills and resources (including staffing) to be able to meet the standards within this guideline.  Interventions and support provided by rehabilitation and life after stroke services should span these varying needs and timescales to fulfil the requirement of the United Nations Convention on the Rights of Persons with Disabilities (United Nations, 2022) to deliver “effective and appropriate measures, including through peer support, to enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life”. [2023]

Decisions about rehabilitation potential have far-reaching consequences for individual patients, including the withdrawal of active rehabilitation. The term ‘rehabilitation potential’ is viewed negatively by stroke survivors and can be inappropriately used by clinicians as justification for rationing access to services. Access to rehabilitation should be driven by the presence of stroke-specific goals. These should not be limited to functional improvement and should include domains such as adjustment, psychological well-being, education regarding stroke, social participation, management of complications, and the management of care needs. All domains should be considered as aspects of rehabilitation and therefore the term ‘no rehabilitation potential’ is not appropriate and should not be used. [2023]

Given the dynamic nature of stroke recovery, fixed decisions around appropriateness of rehabilitation should not be made too early after stroke. Co-existent conditions such as dementia, sensory impairments, or other comorbidities can complicate delivery of rehabilitation, but they should not be the sole reason for not pursuing a rehabilitative approach. [2023]

Selection of an appropriate rehabilitation pathway (e.g. inpatient rehabilitation, early supported discharge) should be determined by the patient’s goals coupled with an understanding of their impairments, abilities, prognosis and the evidence base, informing access to the right service at the right time, at an appropriate intensity. Information should be shared with the person with stroke and their carer(s), to ensure goals and expectations are informed and achievable. There are predictive tools (such as the Orpington Prediction Scale (Mohapatra & Jones, 2015), PREP2 (Stinear et al, 2017a), and TWIST (Smith et al, 2017)) that give useful information at a population level and can be used to inform such discussions. [2023]

Decisions regarding discharge from rehabilitation should be made with involvement of the person with stroke (shared decision making) when stroke-related goals have been met. This should never be an irrevocable decision, but should include the opportunity for review and access back into services at any time via self referral or professional referral. The decision should relate to the person’s rehabilitation needs at a single point in time. It should be understood that a person with stroke may have stroke-related needs or goals at any point following their stroke. Life after stroke services should be available to support and advise during, between, and following different phases of rehabilitation (Section 5.27 Further rehabilitation). [2023]

Rehabilitation is an adaptive process, and the practice and repetition of functional tasks for months or years is a key component of optimal recovery. The evidence for intensity of therapy within this chapter mainly relates to physical and functional rehabilitation after stroke. Less is known about the intensity of therapy required for psychological, cognitive or sensory effects of stroke; however, some principles regarding practice and training may be relevant. [2023]

Greater amounts of physical therapy (i.e. dose) are associated with better recovery (Kwakkel et al, 1999; Kwakkel & Wagenaar, 2002; Bhogal et al, 2003a; Bhogal et al, 2003b; Kwakkel et al, 2004). The dose of therapy is multi-faceted, encompassing not only the number of treatment sessions, but also their duration and frequency. It is unclear whether therapy needs to be more intense (i.e. the same amount of therapy over a shorter time) but there is evidence that motor learning is best accomplished with challenging, motivating tasks and variable training schedules (Krakauer, 2006). In reality, stroke therapy is rarely delivered intensively or in high doses. Studies have shown that therapy sessions commonly feature low numbers of repetitions, low cardiovascular activity , and with the patient frequently inactive (Bernhardt et al, 2004; Lang et al, 2009; Scrivener et al, 2012; West & Bernhardt, 2012; Hayward & Brauer, 2015). This is a particular issue in the UK, where many services are unable to deliver guideline-recommended levels of activity. In the year April 2021-22 the Sentinel Stroke National Audit Programme (SSNAP) reported that 16.8% of patients received more than 45 minutes of occupational therapy 7 days a week, 11.9% received more than 45 minutes of physiotherapy 7 days a week and 6.6% received at least 45 minutes of speech and language therapy 7 days a week in participating UK hospitals. In recent years other countries such as Australia (Stroke Foundation, 2022), Canada (Teasell et al, 2020) and the Netherlands (Veerbeek et al, 2014a) have significantly progressed this target to the expectation that patients receive at least three hours of therapy per day. [2023]

The content of therapy is also important. An ineffective therapy will not benefit patients whatever the dose or intensity. As detailed in this chapter, the most effective therapy for promoting motor recovery after stroke is based on exercise and practice of functional tasks augmented as necessary by technological and priming techniques (Veerbeek et al, 2014b; French et al, 2016a; Wattchow et al, 2018; Scrivener et al, 2020). The main points of post-stroke therapy aimed at motor recovery are understanding the impairments, activity, and individualised goals, leading to a high number of repetitions of relevant exercise and functional tasks. The amount of activity that patients are able to undertake during rehabilitation is more important than how much time patients spend in face-to-face therapy with qualified therapists. These principles apply to inpatient, outpatient and community settings. Commissioners/service planners, service managers and clinicians must drive improvements in the culture and processes of rehabilitation to maximise both therapist-delivered therapy and opportunities and support for practice and activity outside formal therapy sessions, recognising that rehabilitation can be delivered in a number of ways including supervised practice, group work and self practice. Delivery methods should be considered to ensure both effective delivery for patients and efficient use of resources. [2023]

Goal setting can be defined as a behavioural target that is central to rehabilitation, but is also effective in secondary risk factor reduction such as weight loss, smoking cessation or alcohol reduction.  Goal setting is the process by which the person with stroke (and their family or carers if they wish) and members of the stroke team identify individual treatment goals which are meaningful, challenging and have personal value.  Goals are worked towards over a specified period of time, both short and long term.  Traditionally goals have been therapy-led and orientated to specific therapy targets which are realistic and measurable.  This method has proved to be an effective and efficient rehabilitation tool when used flexibly to reflect that the person’s ability and motivation to participate may fluctuate over time.  A balance should be made between practicality, working in a step wise approach and supporting the aspirations of the person with stroke.  Recently a move towards self-management and self-efficacy has been promoted as a more person-centred approach to goal setting. [2016]

There is increasing evidence of psychological factors that influence confidence and adjustment to life after stroke. Self-efficacy has been defined as an ‘individual’s belief in their own capability’ and has been found to be positively associated with mobility, activities of daily living, and quality of life and negatively associated with depression after stroke (Korpershoek et al, 2011). Self-efficacy is closely related to mood and self-esteem, and there are relations between self-efficacy and emotional states (depression, anxiety) and quality of life. [2016]

Self-efficacy may mediate self-management skills such as problem solving and goal setting and is used as an outcome measure in some self-management programmes (Korpershoek et al, 2011; Lennon et al, 2013; Parke et al, 2015; Warner et al, 2015). There is emerging evidence on the utility of changing self-efficacy to influence independence and the promotion of self-management after stroke. Self-management has been defined in various ways but many programmes refer to the ‘actions and confidence of individuals to manage the medical and emotional aspects of their condition in order to maintain or create new life roles’ (Corbin, 1998; Parke et al, 2015). Programmes mainly focus on supporting the knowledge and skills required to self-manage, and range from educational approaches to interventions to support behaviour change. [2016]

Remotely delivered therapy is rehabilitation delivered using technology, with a remote therapist personalising a programme or tasks to specifically address identified impairments or goals. This may take place with a therapist present during the session remotely to adapt and give feedback in real time, or asynchronous practice, when the therapist gives and receives feedback offline. Therapy can be delivered via videoconferencing, and can be individual or in a group. The term is used synonymously with telerehabilitation, which has been defined as “the use of telecommunication, by either direct video or audio, to deliver rehabilitative interventions” (Appleby et al, 2019). Telehealth or telemedicine often uses similar technologies but focuses on risk factors, secondary prevention, behaviour or lifestyle modifications (Bashshur, 1995). [2023]

Telerehabilitation saw significant advances during the COVID-19 pandemic, with programmes such as N-ROL (Neuro Rehab On-Line) and the Bridges community of practice (www.bridgesselfmanagement.org.uk) providing examples and guidance to assist patients and therapists to engage in remotely delivered rehabilitation. [2023]

A range of technologies can be used for communication between the patient and therapist, such as telephone, videoconferencing, apps, sensors (e.g. pedometers, wearable devices) and virtual reality (Laver et al, 2020). Technological innovations such as telerehabilitation may help address barriers to accessing face-to-face rehabilitation, such as time and resource limitations, geographical isolation and compliance with rehabilitation (Appleby et al, 2019). There are potential advantages of remotely delivered therapy in terms of patient satisfaction (although studies are affected by selection bias), motivation, agency, the patient and therapist not needing to travel, and efficiency for multidisciplinary teams. Barriers to use by patients and therapists can include difficulties with equipment set up, connectivity and problems with the interface (Tyagi et al, 2018) and lack of privacy in the home setting. Additional barriers may impact on ability to engage with telerehabilitation for those with reduced comprehension, cognitive processing difficulties, or visual deficits. [2023]

Local systems should consider digital inequities and digital literacy, as well as socio economic impact on availability of equipment. Careful consideration should be taken as to whether remotely delivered therapy is best placed to meet the needs of individuals (particularly those with cognitive or language deficits), and which programs and equipment may be most accessible. For those unable to access remotely delivered therapy, a face-to-face alternative should be available. Support such as volunteers or peer support should be considered for those who are keen to trial technology-based options. [2023]

Self-directed rehabilitation (or self-practice) refers to approaches for promoting independent therapeutic activity away from a clinical setting (Da-Silva et al, 2018). Self-directed rehabilitation can be considered as an option alongside other rehabilitation approaches to increase overall therapy time and dose. Personalising programmes to the individual’s health beliefs, situation, preferences and needs is important for facilitating adherence to self-practice (Vadas et al, 2021). Self-directed rehabilitation is often part of a comprehensive rehabilitation approach rather than a separate entity. [2023]