NIHR Signal Carers of stroke survivors voice an unmet need for practical and emotional support

Published on 22 August 2017

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.  

Carers of stroke survivors voice an unmet need for practical and emotional support

Share your views on the research.

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).

Bibliography

NHS Choices.  Stroke – act F.A.S.T. London: Department of Health.

NHS Choices. Carers' rights and the Care Act. London: Department of Health; 2015.

NICE. Stroke rehabilitation in adults. CG162. London: National Institute for Health and Care Excellence; 2013.

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.

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).

Bibliography

NHS Choices.  Stroke – act F.A.S.T. London: Department of Health.

NHS Choices. Carers' rights and the Care Act. London: Department of Health; 2015.

NICE. Stroke rehabilitation in adults. CG162. London: National Institute for Health and Care Excellence; 2013.

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.

Carers' experiences, needs and preferences during inpatient stroke rehabilitation: a systematic review of qualitative studies

Published on 2 April 2017

Luker, J.,Murray, C.,Lynch, E.,Bernhardsson, S.,Shannon, M.,Bernhardt, J.

Arch Phys Med Rehabil , 2017

OBJECTIVE: To report and synthesise the experiences, needs and preferences of carers of stroke survivors undergoing inpatient rehabilitation. DATA SOURCES: MEDLINE, CINAHL, Embase, PsycINFO and Web of Science were searched to March 2016. Reference lists of relevant publications were searched. No language restrictions were applied. STUDY SELECTION, APPRAISAL AND DATA EXTRACTION: Eligible qualitative studies reported the experiences of carers of stroke survivors who underwent inpatient rehabilitation. Selection, quality appraisal, and data extraction were undertaken by two or more reviewers. The search yielded 3532 records; 93 full-text publications were assessed for eligibility and 34 documents (33 studies) were included. Comprehensiveness of reporting was assessed using the COREQ framework. All text in studies' results and discussion sections were extracted for analysis. DATA SYNTHESIS: Extracted texts were analysed inductively using thematic synthesis. Seven analytical themes were developed that related to the carers' experiences, needs and preferences: (1) Overwhelmed with emotions; (2) Recognition as a stakeholder in recovery; (3) Desire to be heard and informed; (4) Persisting for action and outcomes; (5) Being legitimate clients; (6) Navigating an alien culture and environment; (7) Managing the transition home. CONCLUSIONS: This systematic review provides new insights into the experiences, needs and preferences of carers of stroke survivors undergoing inpatient rehabilitation. Carers experienced distress as they navigated a foreign culture and environment without adequate communication and processes in place for their inclusion. We recommend deliberate efforts to provide a more inclusive environment that better supports and prepares carers for their new role.

Expert commentary

I support the view that, whilst in hospital, healthcare professionals are focused primarily on the ongoing work and supporting inpatient care and outcomes, including planning the discharge of the stroke survivor.

As a stroke survivor, I recognise that this can be a barrier when a more comprehensive, holistic approach is required. Carers and families need a full understanding of their future role, both to help them personally and for the sake of the stroke survivor. In my experience of stroke, there was a distinct lack of training in place for the future carer.

Finally, I support the view that systems should be implemented to enable carers to gain the support they need themselves. For example, access to professional help and time out or respite support are important for carers to fulfil their vital role.

Phil Johnson, Stroke Survivor & Nottingham University Stroke Research Partnership Core Team Member