The carers of stroke survivors express a need to be recognised by hospital rehabilitation teams as partners in care. Carers emphasised that their deep knowledge can contribute to joint decision making about the care of their spouse or family member. This research suggests that considering carers’ needs for support, information and training into care planning could ease the distress currently reported.
This review describes how family, friends and spouses often felt emotionally overwhelmed, excluded from important discussions about the stroke survivor’s rehabilitation or unsupported in adapting to their caring role. The review included studies from ten diverse countries, and transferability of the research was enhanced by this. The review also benefited from a combined sample of 452 stroke carers.
The findings do reinforce the importance of working in partnership with carers to co-design care, providing them with the practical training they need, identifying and signposting the support available.
Why was this study needed?
In recent years there has been substantial progress in improving stroke awareness and treatment. Consequently, more people are surviving strokes than previously. However, two out of three of the UK’s 1.2 million stroke survivors are left with some kind of disability and rely on informal carers and spouses to help them remain independent.
During initial hospital-based rehabilitation after a stroke, survivors may not be able to fully communicate, so their friends and family play an important role in expressing their wishes and needs. This can place an unexpected burden on these family members, friends and spouses who are often unprepared for the practical help that will be required after discharge from hospital.
Despite the essential role that carers fulfil there is little evidence on how best to prepare them for their new responsibilities. This review set out to bring together the available evidence of carers’ views on their previous experiences of hospital-based rehabilitation, and the information and support they received on transition into this new role.
What did this study do?
This was a review of 34 qualitative articles using questionnaires, interviews and focus groups to explore 452 carers’ experiences, needs and preferences of hospital-based stroke rehabilitation programmes. The findings of the studies were grouped into themes by two or more researchers before the seven main themes were finalised.
Nine of the studies were based in the UK and included 84 adult carers. The rest were from USA, Canada, Australia, New Zealand, Ireland, Germany, Sweden, Singapore and Taiwan. Studies were published between 1997 and 2015, and included from three to 48 carer experiences.
Quality of reporting was assessed using a recognised tool, with a third of the studies reporting less than half of the criteria. However, overall the researchers judged that the findings generally represented carers’ experiences.
What did it find?
- Carers reported feeling overwhelmed by emotion, shock at the person having a stroke and a sense of grief. These reactions were particularly common when the person had speech problems after their stroke. Carers felt that it was important for staff to prepare carers for reality whilst maintaining hope and positivity. These feelings were eased through emotional, psychosocial and practical support, which was reported as sometimes lacking.
- Carers wanted to feel more actively involved, feeling heard and listened to and recognised as part of the stroke survivor’s rehabilitation and ongoing care. Carers felt less able to support the stroke survivor if they didn’t understand what the recovery trajectory was or how they were progressing.
- The workload of hospital staff meant that carers often felt they had to chase up information or services. Carers sometimes felt that hospital staff perceived them as a nuisance and they reported having to “pick their battles”.
- The sudden nature of stroke meant that many carers needed time to understand and adapt. Not knowing how to navigate the hospital environment left them feeling disoriented. Carers appreciated the time spent by individual staff explaining the rehabilitation process.
- Carers felt that they would benefit from more support to ease the transition back into the home environment. They particularly valued respite care, with many needing someone else to give them “permission” to take time out.
What does current guidance say on this issue?
NICE guidelines emphasise that hospital-based stroke rehabilitation services should consist of a multidisciplinary team actively working in partnership and close communication with stroke survivors and their families and carers.
NICE recommend appropriate planning and training for carers to facilitate a return home. A social care assessment should identify any practical requirements for the stroke survivor or their family/carer.
Under the Care Act 2014, carers have a legal right to a “carer’s assessment” to identify what support they need and assess their eligibility for financial support from local authorities. Support ranges from direct help with their caring responsibilities, to helping carers to stay connected friends/family or providing temporary replacement care to give the carer respite.
What are the implications?
The overarching theme of this review is that carers felt a need to have their important role in stroke survivors’ rehabilitation better recognised. An inclusive environment could be created to enable carers to access support, information and training.
The relevance of these experiences to current UK practice should be considered, as services are likely to have changed over the past 20 years. Nevertheless, the needs highlighted by these studies support the current focus on co-designing rehabilitation services and regularly reviewing carers’ needs in the UK.
A themed review, Roads to Recovery, brings together NIHR evidence relevant to those planning and delivering stroke services, and to those living with stroke and their carers.
Citation and Funding
Luker J, Murray C, Lynch E, et al. Carers' experiences, needs and preferences during inpatient stroke rehabilitation: a systematic review of qualitative studies. Arch Phys Med Rehabil. 2017. [Epub ahead of print].
The researchers involved in this review were in receipt of Fellowships from the Australian National Health and Medical Research Council (NHMRC).
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NIHR DC. Roads to Recovery. London: National Institute for Health Research Dissemination Centre; 2017.
Stroke Association. State of the nation: stroke statistics. London: Stroke Association; 2017.
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