Art & science literature review
Effects of stroke on informal carers O’Shea R, Goode D (2013) Effects of stroke on informal carers. Nursing Standard. 28, 15, 43-47. Date of submission: July 16 2013; date of acceptance: September 9 2013.
Abstract Informal carers have a pivotal role in caring for patients who have had a stroke. Research has shown that informal carers have unmet information, psychological and social needs. There is a lack of research about how informal carers in Northern Ireland manage the role of caring for a patient who has experienced stroke, and what kind of support they need and receive. This literature review explores the experiences of informal carers providing stroke care in the home. The issues highlighted in the article are relevant worldwide, because the incidence of stroke is increasing in developed and developing countries.
Authors Rachel O’Shea Staff nurse, Stroke Unit, Northwick Park Hospital, Harrow. Debbie Goode Lecturer, University of Ulster, School of Nursing, Magee Campus, Londonderry. Correspondence to: [email protected]
Keywords Education, informal carers, literature review, psychological effects, support, stroke care
Review All articles are subject to external double-blind peer review and checked for plagiarism using automated software.
Online Guidelines on writing for publication are available at www.nursing-standard.co.uk. For related articles visit the archive and search using the keywords above.
APPROXIMATELY 15 MILLION people worldwide experience stroke annually, of whom five million are left permanently disabled, placing a burden on family and community services (World Health Organization 2005). The incidence of stroke is increasing in developed and developing countries (World Heart Federation 2013). In Northern Ireland, there are an estimated 4,000 occurrences of stroke annually and 32,000 people are living with disabilities as a result of stroke (Stroke Association 2013). In addition, the incidence of stroke is likely to continue to increase because of the increasing ageing
population, the growing epidemic of diabetes and obesity in the general population, and an increased prevalence of patients with heart failure (Gordon et al 2004, Department of Health (DH) 2008, British Heart Foundation 2012, Department of Health, Social Services and Public Safety (DHSSPS) 2013a). As a result, Northern Ireland, as well as the rest of the world, is facing a stroke epidemic (World Stroke Organization 2013). Stroke is estimated to cost the UK economy £8.9 billion per year, with direct care accounting for approximately 50% of total NHS costs and informal care accounting for 27% of the total costs (Saka et al 2009). According to the DHSSPS (2008), 4,000 people experience stroke annually in Northern Ireland, while Smith et al (2004) suggested that more than one third of these may be dependent on an informal carer. The Northern Ireland census of population for 2011 indicated that there are approximately 213,980 informal carers in Northern Ireland (Northern Ireland Statistics and Research Agency 2011). Stroke rehabilitation has reduced associated disability, with a corresponding decrease in institutionalised care, and has resulted in an increase in the number of patients who have experienced stroke returning home and receiving care in the community (McCullagh et al 2005). Stroke has the potential to not only affect the health and quality of life of the patient, but also of informal carers (Mackenzie et al 2007).
Literature review A literature review was conducted to identify the effect of stroke on informal carers using the following search engines: Cumulative Index to Nursing and Allied Health Literature (CINAHL), ScienceDirect, Cochrane Library, MEDLINE, PsycINFO and SwetsWise. Keywords used to identify relevant literature included stroke, informal carers, carers’ experiences, support, challenges, psychological effects and emotional effects, using the Boolean operators AND and OR. Relevant books and government legislation were also explored. The search was limited to literature from 2003-13 to ensure the most relevant and up-to-date information was included, and was limited to the English language. Forty-two articles were reviewed. The review of the literature
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Art & science literature review indicated that informal carers predominantly reported unmet needs in relation to information provision, and social and psychological support.
Psychological effects Caring for patients who have experienced stroke can have adverse psychological effects on informal carers (van Exel et al 2005). Informal carers are at risk of developing depression, strain and anxiety in the weeks and months following stroke (Green and King 2009, Gillespie and Campbell 2011). Stroke occurs suddenly, without warning, and is relatively unpredictable in terms of recovery (Greenwood et al 2009a). This sudden, unplanned and unpredictable event can have a major effect on the psychological health of informal carers. In a cohort study conducted by Simon et al (2009), 105 informal carers of patients who recently experienced stroke were interviewed. It was found that carers were two-and-a-half times as likely to have significant psychological distress compared with a control group of non-carers. In a qualitative study undertaken in Finland, Berg et al (2005) interviewed 98 carers of patients who had experienced stroke at the acute phase, and at six months and 18 months post-stroke. It was found that 38% of carers who were also spouses were exhausted at six months and 29% were exhausted at 18 months. The evidence suggests that there is a correlation between exhaustion and depression, with carers who are exhausted more likely to experience depressive symptoms (Berg et al 2005). Comparing these results to an earlier study by Berg et al (2003), which identified a 23-29% rate of patient depression, depression in carers was found to be more prevalent than in patients (Berg et al 2005). Berg et al (2005) explained that depressive symptoms in the acute phase are an indicative factor for depression at later stages. As a result, it is important that healthcare professionals include an assessment of the informal carer’s needs as part of the rehabilitation plan for the patient who has experienced stroke. There is evidence from qualitative literature reviews that informal carers of patients who have had a stroke experience positive outcomes also, such as being brought closer to patients who had a stroke; appreciating their own life, health and inner strength; and learning new skills (Gillespie and Campbell 2011). In a purposive sample of 31 informal carers, Greenwood et al (2009a) found that carers identified relative and absolute positives. For example, a relative positive was comparing the patient with other patients who had experienced more severe disabilities. Absolute positives included the carer being
brought closer to the patient, the carer realising his or her own inner strengths, and carers and patients taking better care of their health. Haley et al (2009) conducted an epidemiologically based study that explored the problems and benefits experienced by carers. More than 90% of carers reported that their experiences had increased their appreciation for life, 86% of carers stated that the event strengthened their relationships with others, and 81% of carers reported that their experience had given more meaning to their life. According to Greenwood et al (2009a), informal carers begin to see positive outcomes in relation to their psychological health when they overcome challenges in their caring role. However, this study was limited by a small sample size and participants were recruited only from one acute and two rehabilitation units in the same hospital. The literature suggests that caring for patients who have experienced stroke can affect the psychological health and wellbeing of their informal carers. Informal carers experience exhaustion, strain, anxiety and depression, and their needs should be assessed by healthcare professionals who should also provide support to help carers meet these needs.
Challenges regarding provision of information According to Twiddy et al (2012), carers are generally more pessimistic about the future than patients who have experienced stroke. This may be because of carers’ lack of knowledge in relation to the illness trajectory and what potential outcomes could occur (Mackenzie et al 2007) or unpreparedness to cope with their new caring role (Visser-Meily et al 2006). In a qualitative UK cohort study, Simon et al (2008) interviewed 105 informal carers, and questionnaires on measures of psychological health, physical health, social wellbeing, handicap of the patient and formal community support were completed. The results showed that 57% (n=44) of carers were dissatisfied with the information they had received regarding the role of carer. This is in agreement with the results of a small qualitative study by Cecil et al (2011), in which semi-structured interviews and a focus group were used to explore informal carers’ views and opinions of the major issues and concerns faced in everyday life. All participants identified the provision of information as a crucial requirement to enable them to care for patients who had experienced stroke. These carers felt that they were not provided with enough information regarding the complications of stroke, the changes that
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may occur in the patient’s personality and the likelihood of the event reoccurring. However, the rigour of this study was compromised by the small sample size and the findings were limited to female carers’ perspectives (Cecil et al 2011). In a qualitative study in Sweden, Gosman-Hedström and Dahlin-Ivanoff (2012) used focus groups to explore how 16 female carers felt about their life situation after their partners experienced stroke. The carers highlighted how they had to deal with uncertainty and unpredictability in their lives when the patient was discharged from hospital. They also appeared to be grateful to still be living with their husbands but because of the stroke, they had to deal with personality changes, unpredictable behaviour and fear of the stroke recurring. It also emerged that participants felt anxious and worried, and as a result they distanced themselves from their social network and confined themselves to their homes. However, the study had a small sample size, may not be culturally transferable and the findings were limited to female carers’ perspectives. Between 25% and 50% of patients who have experienced stroke require some assistance with activities of daily living (Gordon et al 2004). Informal carers are required to provide assistance and support with these activities, but receive little training for this role (Kalra et al 2004). In a randomised controlled trial, 300 patients who had experienced stroke and their informal carers were given formal training to determine whether a training programme would reduce carer burden (Kalra et al 2004). The training consisted of providing basic moving and handling skills to assist activities of daily living for patients who had experienced stroke. The results indicated that the training programme significantly reduced carers’ burden, anxiety and symptoms of depression. Furthermore, it was found that carers’ quality of life increased at three months, and again at 12 months, following patient discharge. In addition, the training helped patients to achieve greater independence at an early stage of rehabilitation. In a systematic review, Brereton et al (2007) discussed the benefits of supportive interventions for carers as well as the relevance of information and educational support. For example, learned helplessness, where the person learns to accept the situation without trying to find a solution or a way out of the problem for the patient who has experienced stroke, is an area that can be addressed with support and education for the carer and family. Therefore, the literature review identified areas where information was required by informal carers. In particular, information needs included those relating to the role of the carer, complications
of stroke, dealing with changes in patients’ personality and likelihood of recurrence of stroke.
Challenges regarding support networks Greenwood et al (2010) conducted a qualitative study using interview techniques to explore informal carers’ experiences of caring for patients who had experienced stroke from discharge to three months later. One informal carer described how she was reluctant to leave the patient alone because of the patient’s post-stroke cognitive ability and unpredictable behaviour. For these reasons, she relied heavily on family and friends for support. Simon et al (2009) stated that good quality informal support networks protect carers from psychological distress. Interestingly, formal support networks, for example paid carers, can have a negative effect on both informal carers’ and patients’ lives (Greenwood et al 2010). In the Greenwood et al (2010) study, informal carers discussed the unreliability of services and inconsistency of timing relating to the support visits of paid carers, with carers and patients reporting increased anxiety. A study conducted by Strudwick and Morris (2010) using semi-structured interviews explored the experiences of African-Caribbean informal carers providing care for patients who had experienced stroke in the UK. These carers preferred to be independent from formal paid care services, reasoning that they understood and cared for patients’ needs better than formal services. This suggests that instead of focusing on formal services for carers, the aim should be to improve the quality of informal caring networks (Simon et al 2008). Patients who have experienced stroke and carers’ perceptions of a family support organiser were investigated in 20 semi-structured interviews conducted in a randomised controlled trial (Lilley et al 2003). Results indicated that individuals who received this service reported that the inclusion of a family support organiser was valuable in helping to claim benefits, as a source of information about stroke and providing continuity between stroke services. Provision of emotional support was highlighted only by a few interviewees. A control group who did not receive the family support organiser service described feelings of isolation, difficulties with accessing information and being let down by stroke services post-discharge. However, it should be noted that the study was limited by the exclusion of non-English speaking participants and a small sample size. In a qualitative study, Bulley et al (2010) conducted semi-structured interviews to explore nine informal carers’ experiences of life
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Art & science literature review following stroke. Findings indicated that the participants experienced profound deprivation and disengagement from their usual routines because of the nature of their caring role. Some participants were forced to resign from their place of work, causing financial uncertainty and anxiety, and leaving them with feelings of loss in relation to their hopes, plans and aspirations for the future. These informal carers also suggested that social activities such as hobbies and outings were often difficult to justify because the patients who experienced stroke relied heavily on the informal carer for most activities. Limitations of this study included the small sample size and three interviews were conducted in the presence of a patient who had experienced stroke, which may have compromised the carers’ responses. In a systematic literature review by Stoltz et al (2004), it was found that carers fear social isolation and wish to network in groups with peers, either for social or learning requirements. In a study in Sweden, Henrisksson and Andershed (2007) interviewed ten family carers who had taken part in a six-week support group programme
to explore the effect that this had on informal carers’ lives. Although the programme was for palliative informal carers, the intervention applied to informal stroke carers. The support group provided participants with an opportunity to socialise and share experiences with others in similar situations. For some participants, it was their only opportunity to leave their home. All participants claimed they felt relaxed within this supportive environment. A limitation of this study was that the participants knew the nurse researcher on a personal level, which may have had a positive effect on the findings. UK national guidance for stroke recognises that informal carers require physical, emotional, social and financial support to cope with the problems that may arise when caring for a patient who has experienced stroke (Royal College of Physicians 2012). There are also government strategies to improve healthcare professionals’ role in supporting informal carers, for example Carers at the Heart of 21st-Century Families and Communities (DH 2008) and Caring for Carers: Recognising, Valuing and Supporting the Caring Role (DHSSPS 2006). The need for professional
References Berg A, Palomäki H, Lehtihalmes M, Lönnqvist J, Kaste M (2003) Poststroke depression: an 18-month follow-up. Stroke. 34, 1, 138-143. Berg A, Palomäki H, Lönnqvist J, Lehtihalmes M, Kaste M (2005) Depression among caregivers of stroke survivors. Stroke. 36, 3, 639-643. Brereton L, Carroll C, Barnston S (2007) Interventions for adult family carers of people who have had a stroke: a systematic review. Clinical Rehabilitation. 21, 10, 867-884. British Heart Foundation (2012) Coronary Heart Disease Statistics. A Compendium of Health Statistics. 2012 Edition. British Heart Foundation, London. Bulley C, Shiels J, Wilkie K, Salisbury L (2010) Carer experiences of life after stroke – a qualitative analysis. Disability and Rehabilitation. 32, 17, 1406-1413. Cecil R, Parahoo K, Thompson K, McCaughan E, Power M, Campbell Y (2011) ‘The hard work starts now’: a glimpse into the lives of carers of community-dwelling stroke
survivors. Journal of Clinical Nursing. 20, 11-12, 1723-1730.
and family relationships. Nursing Standard. 26, 2, 39-46.
Department of Health (2008) Carers at the Heart of 21st-Century Families and Communities. The Stationery Office, London.
Gordon NF, Gulanick M, Costa F et al (2004) Physical activity and exercise recommendations for stroke survivors: an American Heart Association scientific statement from the Council on Clinical Cardiology, Subcommittee on Exercise, Cardiac Rehabilitation, and Prevention; the Council on Cardiovascular Nursing; the Council on Nutrition, Physical Activity, and Metabolism; and the Stroke Council. Circulation. 27, 109, 2031-2041.
Department of Health, Social Services and Public Safety (2006) Caring for Carers: Recognising, Valuing and Supporting the Caring Role. DHSSPS, Belfast. Department of Health, Social Services and Public Safety (2008) Improving Stroke Services in Northern Ireland. DHSSPS, Belfast. Department of Health, Social Services and Public Safety (2013a) A Fitter Future for All. Framework for Preventing and Addressing Overweight and Obesity in Northern Ireland 2012-2022. DHSSPS, Belfast.
Gosman-Hedström G, Dahlin-Ivanoff S (2012) ‘Mastering an unpredictable everyday life after stroke’ – older women’s experiences of caring and living with their partners. Scandinavian Journal of Caring Sciences. 26, 3, 587-597.
Managing uncertainty in life after stroke: a qualitative study of the experiences of established and new informal carers in the first 3 months after discharge. International Journal of Nursing Studies. 46, 8, 1122-1133. Greenwood N, Mackenzie A, Cloud GC, Wilson N (2009b) Informal primary carers of stroke survivors living at home – challenges, satisfactions and coping: a systematic review of qualitative studies. Disability and Rehabilitation. 31, 5, 337-351. Greenwood N, Mackenzie A, Cloud G, Wilson N (2010) Loss of autonomy, control and independence when caring: a qualitative study of informal carers of stroke survivors in the first three months after discharge. Disability and Rehabilitation. 32, 2, 125-133.
Department of Health, Social Services and Public Safety (2013b) Carers. www.dhsspsni.gov.uk/ ec-carers (Last accessed: November 26 2013.)
Green TL, King KM (2009) Experiences of male patients and wife-caregivers in the first year post-discharge following minor stroke: a descriptive qualitative study. International Journal of Nursing Studies. 46, 9, 1194-1200.
Haley WE, Allen JY, Grant JS, Clay OJ, Perkins M, Roth DL (2009) Problems and benefits reported by stroke family caregivers: results from a prospective epidemiological study. Stroke. 40, 6, 2129-2133.
Gillespie D, Campbell F (2011) Effect of stroke on family carers
Greenwood N, Mackenzie A, Wilson N, Cloud G (2009a)
Henriksson A, Andershed B (2007) A support group programme for
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support and training for informal carers is essential (Mackenzie et al 2007, Greenwood et al 2009a, 2009b, 2010).
Recommendations for informal carers For informal carers in Northern Ireland and elsewhere, challenges remain in terms of information provision and social support. For informal carers to effectively face the challenges of caring for their loved one at home, they must be provided with the appropriate level of education and training before discharge of the patient who has experienced stroke. Once carers are given the correct tools to overcome challenges in terms of knowing how to perform the role of carer and having support networks in place, they can ensure their own health and wellbeing. In Northern Ireland, the DHSSPS (2013b) provides carers with information and support about financial and physical help, and assessment. The Northern Health and Social Care Trust (2012) developed a five-year strategy in consultation with some of the 53,507 unpaid carers within the trust area in a bid to meet their needs. The strategy is set in
relatives during the late palliative phase. International Journal of Palliative Nursing. 13, 4, 175-183. Kalra L, Evans A, Perez I et al (2004) Training carers of stroke patients: randomised controlled trial. British Medical Journal. 328, 7448, 1099-1104. Lilley SA, Lincoln NB, Francis VM (2003) A qualitative study of stroke patients’ and carers’ perceptions of the stroke family support organizer service. Clinical Rehabilitation. 17, 5, 540-547. Mackenzie A, Perry L, Lockhart E, Cottee M, Cloud G, Mann H (2007) Family carers of stroke survivors: needs, knowledge, satisfaction and competence in caring. Disability and Rehabilitation. 29, 2, 111-121. McCullagh E, Brigstocke G, Donaldson N, Kalra L (2005) Determinants of caregiving burden and quality of life in caregivers of stroke patients. Stroke. 36, 10, 2181-2186. Northern Health and Social Care Trust (2012) NHSCT
the context of the themes of identification of and interface with carers, provision of information and training for carers, guidance relating to employment and available support services for all, including provision for young carers. This is particularly relevant and timely given the projected increase in the number of stroke survivors and an increased reliance on informal carers to care for patients who have experienced stroke.
Conclusion The issues highlighted in this literature review are relevant to Northern Ireland and are a global concern because of the increasing incidence of stroke worldwide. Informal carers continue to have unmet psychological, information and social needs, and therefore are at increased risk of developing depression, strain and anxiety in the weeks and months following stroke. An accurate assessment by healthcare professionals of the needs of informal carers is important as part of an effective rehabilitation plan for the patient who has experienced stroke to improve quality of life of both patients and their carers NS
Carers’ Strategy. 2012-2017. www.northerntrust.hscni. net/images/NHSCT_Carers_ Strategy.pdf (Last accessed: November 26 2013.) Northern Ireland Statistics and Research Agency (2011) Census 2011. tinyurl.com/NIcen2011 (Last accessed: November 26 2013.) Royal College of Physicians (2012) National Clinical Guideline for Stroke. Fourth edition. RCP, London.
Smith LN, Lawrence M, Kerr SM, Longhorne P, Lees KR (2004) Informal carers’ experience of caring for stroke survivors. Journal of Advanced Nursing. 46, 3, 235-244. Stoltz P, Udén G, Willman A (2004) Support for family carers who care for an elderly person at home – a systematic literature review. Scandinavian Journal of Caring Sciences. 18, 2, 111-119.
Saka Ö, McGuire A, Wolfe C (2009) Cost of stroke in the United Kingdom. Age and Ageing. 38, 1, 27-32.
Stroke Association (2013) Stroke Facts and Statistics for Your Area. www.stroke.org.uk/ news/stroke-facts-and-statisticsyour-area (Last accessed: November 26 2013.)
Simon C, Kumar S, Kendrick T (2008) Formal support of stroke survivors and their informal carers in the community: a cohort study. Health and Social Care in the Community. 16, 6, 582-592.
Strudwick A, Morris R (2010) A qualitative study exploring the experiences of African-Caribbean informal stroke carers in the UK. Clinical Rehabilitation. 24, 2, 159-167.
Simon C, Kumar S, Kendrick T (2009) Cohort study of informal carers of first-time stroke survivors: profile of health and social changes in the first year of caregiving. Social Science and Medicine. 69, 3, 404-410.
Twiddy M, House A, Jones F (2012) The association between discrepancy in illness representations on distress in stroke patients and carers. Journal of Psychosomatic Research. 72, 3, 220-225.
van Exel NJ, Koopmanschap MA, van den Berg B, Brouwer WB, van den Bos GA (2005) Burden of informal caregiving for stroke patients. Identification of caregivers at risk of adverse health effects. Cerebrovascular Diseases. 19, 1, 11-17. Visser-Meily A, Post M, Gorter JW, Berdenis SB, Van Den Bos T, Lindeman E (2006) Rehabilitation of stroke patients needs a family-centred approach. Disability and Rehabilitation. 28, 24, 1557-1561. World Health Organization (2005) Global Burden of Stroke. www.who.int/cardiovascular_ diseases/en/cvd_atlas_15_ burden_stroke.pdf (Last accessed: November 26 2013.) World Heart Federation (2013) Stroke. www.world-heartfederation.org/cardiovascularhealth/stroke (Last accessed: November 26 2013.) World Stroke Organization (2013) World Stroke Campaign. www. worldstrokecampaign.org/2012/ Pages/Home.aspx (Last accessed: November 26 2013.)
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Effects of stroke on informal carers O’Shea R, Goode D (2013) Effects of stroke on informal carers. Nursing Standard. 28, 15, 43-47. Date of submission: July 16 2013; date of acceptance: September 9 2013.
Abstract Informal carers have a pivotal role in caring for patients who have had a stroke. Research has shown that informal carers have unmet information, psychological and social needs. There is a lack of research about how informal carers in Northern Ireland manage the role of caring for a patient who has experienced stroke, and what kind of support they need and receive. This literature review explores the experiences of informal carers providing stroke care in the home. The issues highlighted in the article are relevant worldwide, because the incidence of stroke is increasing in developed and developing countries.
Authors Rachel O’Shea Staff nurse, Stroke Unit, Northwick Park Hospital, Harrow. Debbie Goode Lecturer, University of Ulster, School of Nursing, Magee Campus, Londonderry. Correspondence to: [email protected]
Keywords Education, informal carers, literature review, psychological effects, support, stroke care
Review All articles are subject to external double-blind peer review and checked for plagiarism using automated software.
Online Guidelines on writing for publication are available at www.nursing-standard.co.uk. For related articles visit the archive and search using the keywords above.
APPROXIMATELY 15 MILLION people worldwide experience stroke annually, of whom five million are left permanently disabled, placing a burden on family and community services (World Health Organization 2005). The incidence of stroke is increasing in developed and developing countries (World Heart Federation 2013). In Northern Ireland, there are an estimated 4,000 occurrences of stroke annually and 32,000 people are living with disabilities as a result of stroke (Stroke Association 2013). In addition, the incidence of stroke is likely to continue to increase because of the increasing ageing
population, the growing epidemic of diabetes and obesity in the general population, and an increased prevalence of patients with heart failure (Gordon et al 2004, Department of Health (DH) 2008, British Heart Foundation 2012, Department of Health, Social Services and Public Safety (DHSSPS) 2013a). As a result, Northern Ireland, as well as the rest of the world, is facing a stroke epidemic (World Stroke Organization 2013). Stroke is estimated to cost the UK economy £8.9 billion per year, with direct care accounting for approximately 50% of total NHS costs and informal care accounting for 27% of the total costs (Saka et al 2009). According to the DHSSPS (2008), 4,000 people experience stroke annually in Northern Ireland, while Smith et al (2004) suggested that more than one third of these may be dependent on an informal carer. The Northern Ireland census of population for 2011 indicated that there are approximately 213,980 informal carers in Northern Ireland (Northern Ireland Statistics and Research Agency 2011). Stroke rehabilitation has reduced associated disability, with a corresponding decrease in institutionalised care, and has resulted in an increase in the number of patients who have experienced stroke returning home and receiving care in the community (McCullagh et al 2005). Stroke has the potential to not only affect the health and quality of life of the patient, but also of informal carers (Mackenzie et al 2007).
Literature review A literature review was conducted to identify the effect of stroke on informal carers using the following search engines: Cumulative Index to Nursing and Allied Health Literature (CINAHL), ScienceDirect, Cochrane Library, MEDLINE, PsycINFO and SwetsWise. Keywords used to identify relevant literature included stroke, informal carers, carers’ experiences, support, challenges, psychological effects and emotional effects, using the Boolean operators AND and OR. Relevant books and government legislation were also explored. The search was limited to literature from 2003-13 to ensure the most relevant and up-to-date information was included, and was limited to the English language. Forty-two articles were reviewed. The review of the literature
© NURSING / RCN december 11 No :: vol 28 uses no 15 :: 2013 43 Downloaded fromSTANDARD rcnpublishing.com byPUBLISHING ${individualUser.displayName} on Mar 20, 2015. For personal use only. other without permission. Copyright © 2015 RCN Publishing Ltd. All rights reserved.
Art & science literature review indicated that informal carers predominantly reported unmet needs in relation to information provision, and social and psychological support.
Psychological effects Caring for patients who have experienced stroke can have adverse psychological effects on informal carers (van Exel et al 2005). Informal carers are at risk of developing depression, strain and anxiety in the weeks and months following stroke (Green and King 2009, Gillespie and Campbell 2011). Stroke occurs suddenly, without warning, and is relatively unpredictable in terms of recovery (Greenwood et al 2009a). This sudden, unplanned and unpredictable event can have a major effect on the psychological health of informal carers. In a cohort study conducted by Simon et al (2009), 105 informal carers of patients who recently experienced stroke were interviewed. It was found that carers were two-and-a-half times as likely to have significant psychological distress compared with a control group of non-carers. In a qualitative study undertaken in Finland, Berg et al (2005) interviewed 98 carers of patients who had experienced stroke at the acute phase, and at six months and 18 months post-stroke. It was found that 38% of carers who were also spouses were exhausted at six months and 29% were exhausted at 18 months. The evidence suggests that there is a correlation between exhaustion and depression, with carers who are exhausted more likely to experience depressive symptoms (Berg et al 2005). Comparing these results to an earlier study by Berg et al (2003), which identified a 23-29% rate of patient depression, depression in carers was found to be more prevalent than in patients (Berg et al 2005). Berg et al (2005) explained that depressive symptoms in the acute phase are an indicative factor for depression at later stages. As a result, it is important that healthcare professionals include an assessment of the informal carer’s needs as part of the rehabilitation plan for the patient who has experienced stroke. There is evidence from qualitative literature reviews that informal carers of patients who have had a stroke experience positive outcomes also, such as being brought closer to patients who had a stroke; appreciating their own life, health and inner strength; and learning new skills (Gillespie and Campbell 2011). In a purposive sample of 31 informal carers, Greenwood et al (2009a) found that carers identified relative and absolute positives. For example, a relative positive was comparing the patient with other patients who had experienced more severe disabilities. Absolute positives included the carer being
brought closer to the patient, the carer realising his or her own inner strengths, and carers and patients taking better care of their health. Haley et al (2009) conducted an epidemiologically based study that explored the problems and benefits experienced by carers. More than 90% of carers reported that their experiences had increased their appreciation for life, 86% of carers stated that the event strengthened their relationships with others, and 81% of carers reported that their experience had given more meaning to their life. According to Greenwood et al (2009a), informal carers begin to see positive outcomes in relation to their psychological health when they overcome challenges in their caring role. However, this study was limited by a small sample size and participants were recruited only from one acute and two rehabilitation units in the same hospital. The literature suggests that caring for patients who have experienced stroke can affect the psychological health and wellbeing of their informal carers. Informal carers experience exhaustion, strain, anxiety and depression, and their needs should be assessed by healthcare professionals who should also provide support to help carers meet these needs.
Challenges regarding provision of information According to Twiddy et al (2012), carers are generally more pessimistic about the future than patients who have experienced stroke. This may be because of carers’ lack of knowledge in relation to the illness trajectory and what potential outcomes could occur (Mackenzie et al 2007) or unpreparedness to cope with their new caring role (Visser-Meily et al 2006). In a qualitative UK cohort study, Simon et al (2008) interviewed 105 informal carers, and questionnaires on measures of psychological health, physical health, social wellbeing, handicap of the patient and formal community support were completed. The results showed that 57% (n=44) of carers were dissatisfied with the information they had received regarding the role of carer. This is in agreement with the results of a small qualitative study by Cecil et al (2011), in which semi-structured interviews and a focus group were used to explore informal carers’ views and opinions of the major issues and concerns faced in everyday life. All participants identified the provision of information as a crucial requirement to enable them to care for patients who had experienced stroke. These carers felt that they were not provided with enough information regarding the complications of stroke, the changes that
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may occur in the patient’s personality and the likelihood of the event reoccurring. However, the rigour of this study was compromised by the small sample size and the findings were limited to female carers’ perspectives (Cecil et al 2011). In a qualitative study in Sweden, Gosman-Hedström and Dahlin-Ivanoff (2012) used focus groups to explore how 16 female carers felt about their life situation after their partners experienced stroke. The carers highlighted how they had to deal with uncertainty and unpredictability in their lives when the patient was discharged from hospital. They also appeared to be grateful to still be living with their husbands but because of the stroke, they had to deal with personality changes, unpredictable behaviour and fear of the stroke recurring. It also emerged that participants felt anxious and worried, and as a result they distanced themselves from their social network and confined themselves to their homes. However, the study had a small sample size, may not be culturally transferable and the findings were limited to female carers’ perspectives. Between 25% and 50% of patients who have experienced stroke require some assistance with activities of daily living (Gordon et al 2004). Informal carers are required to provide assistance and support with these activities, but receive little training for this role (Kalra et al 2004). In a randomised controlled trial, 300 patients who had experienced stroke and their informal carers were given formal training to determine whether a training programme would reduce carer burden (Kalra et al 2004). The training consisted of providing basic moving and handling skills to assist activities of daily living for patients who had experienced stroke. The results indicated that the training programme significantly reduced carers’ burden, anxiety and symptoms of depression. Furthermore, it was found that carers’ quality of life increased at three months, and again at 12 months, following patient discharge. In addition, the training helped patients to achieve greater independence at an early stage of rehabilitation. In a systematic review, Brereton et al (2007) discussed the benefits of supportive interventions for carers as well as the relevance of information and educational support. For example, learned helplessness, where the person learns to accept the situation without trying to find a solution or a way out of the problem for the patient who has experienced stroke, is an area that can be addressed with support and education for the carer and family. Therefore, the literature review identified areas where information was required by informal carers. In particular, information needs included those relating to the role of the carer, complications
of stroke, dealing with changes in patients’ personality and likelihood of recurrence of stroke.
Challenges regarding support networks Greenwood et al (2010) conducted a qualitative study using interview techniques to explore informal carers’ experiences of caring for patients who had experienced stroke from discharge to three months later. One informal carer described how she was reluctant to leave the patient alone because of the patient’s post-stroke cognitive ability and unpredictable behaviour. For these reasons, she relied heavily on family and friends for support. Simon et al (2009) stated that good quality informal support networks protect carers from psychological distress. Interestingly, formal support networks, for example paid carers, can have a negative effect on both informal carers’ and patients’ lives (Greenwood et al 2010). In the Greenwood et al (2010) study, informal carers discussed the unreliability of services and inconsistency of timing relating to the support visits of paid carers, with carers and patients reporting increased anxiety. A study conducted by Strudwick and Morris (2010) using semi-structured interviews explored the experiences of African-Caribbean informal carers providing care for patients who had experienced stroke in the UK. These carers preferred to be independent from formal paid care services, reasoning that they understood and cared for patients’ needs better than formal services. This suggests that instead of focusing on formal services for carers, the aim should be to improve the quality of informal caring networks (Simon et al 2008). Patients who have experienced stroke and carers’ perceptions of a family support organiser were investigated in 20 semi-structured interviews conducted in a randomised controlled trial (Lilley et al 2003). Results indicated that individuals who received this service reported that the inclusion of a family support organiser was valuable in helping to claim benefits, as a source of information about stroke and providing continuity between stroke services. Provision of emotional support was highlighted only by a few interviewees. A control group who did not receive the family support organiser service described feelings of isolation, difficulties with accessing information and being let down by stroke services post-discharge. However, it should be noted that the study was limited by the exclusion of non-English speaking participants and a small sample size. In a qualitative study, Bulley et al (2010) conducted semi-structured interviews to explore nine informal carers’ experiences of life
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Art & science literature review following stroke. Findings indicated that the participants experienced profound deprivation and disengagement from their usual routines because of the nature of their caring role. Some participants were forced to resign from their place of work, causing financial uncertainty and anxiety, and leaving them with feelings of loss in relation to their hopes, plans and aspirations for the future. These informal carers also suggested that social activities such as hobbies and outings were often difficult to justify because the patients who experienced stroke relied heavily on the informal carer for most activities. Limitations of this study included the small sample size and three interviews were conducted in the presence of a patient who had experienced stroke, which may have compromised the carers’ responses. In a systematic literature review by Stoltz et al (2004), it was found that carers fear social isolation and wish to network in groups with peers, either for social or learning requirements. In a study in Sweden, Henrisksson and Andershed (2007) interviewed ten family carers who had taken part in a six-week support group programme
to explore the effect that this had on informal carers’ lives. Although the programme was for palliative informal carers, the intervention applied to informal stroke carers. The support group provided participants with an opportunity to socialise and share experiences with others in similar situations. For some participants, it was their only opportunity to leave their home. All participants claimed they felt relaxed within this supportive environment. A limitation of this study was that the participants knew the nurse researcher on a personal level, which may have had a positive effect on the findings. UK national guidance for stroke recognises that informal carers require physical, emotional, social and financial support to cope with the problems that may arise when caring for a patient who has experienced stroke (Royal College of Physicians 2012). There are also government strategies to improve healthcare professionals’ role in supporting informal carers, for example Carers at the Heart of 21st-Century Families and Communities (DH 2008) and Caring for Carers: Recognising, Valuing and Supporting the Caring Role (DHSSPS 2006). The need for professional
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Gosman-Hedström G, Dahlin-Ivanoff S (2012) ‘Mastering an unpredictable everyday life after stroke’ – older women’s experiences of caring and living with their partners. Scandinavian Journal of Caring Sciences. 26, 3, 587-597.
Managing uncertainty in life after stroke: a qualitative study of the experiences of established and new informal carers in the first 3 months after discharge. International Journal of Nursing Studies. 46, 8, 1122-1133. Greenwood N, Mackenzie A, Cloud GC, Wilson N (2009b) Informal primary carers of stroke survivors living at home – challenges, satisfactions and coping: a systematic review of qualitative studies. Disability and Rehabilitation. 31, 5, 337-351. Greenwood N, Mackenzie A, Cloud G, Wilson N (2010) Loss of autonomy, control and independence when caring: a qualitative study of informal carers of stroke survivors in the first three months after discharge. Disability and Rehabilitation. 32, 2, 125-133.
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Henriksson A, Andershed B (2007) A support group programme for
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support and training for informal carers is essential (Mackenzie et al 2007, Greenwood et al 2009a, 2009b, 2010).
Recommendations for informal carers For informal carers in Northern Ireland and elsewhere, challenges remain in terms of information provision and social support. For informal carers to effectively face the challenges of caring for their loved one at home, they must be provided with the appropriate level of education and training before discharge of the patient who has experienced stroke. Once carers are given the correct tools to overcome challenges in terms of knowing how to perform the role of carer and having support networks in place, they can ensure their own health and wellbeing. In Northern Ireland, the DHSSPS (2013b) provides carers with information and support about financial and physical help, and assessment. The Northern Health and Social Care Trust (2012) developed a five-year strategy in consultation with some of the 53,507 unpaid carers within the trust area in a bid to meet their needs. The strategy is set in
relatives during the late palliative phase. International Journal of Palliative Nursing. 13, 4, 175-183. Kalra L, Evans A, Perez I et al (2004) Training carers of stroke patients: randomised controlled trial. British Medical Journal. 328, 7448, 1099-1104. Lilley SA, Lincoln NB, Francis VM (2003) A qualitative study of stroke patients’ and carers’ perceptions of the stroke family support organizer service. Clinical Rehabilitation. 17, 5, 540-547. Mackenzie A, Perry L, Lockhart E, Cottee M, Cloud G, Mann H (2007) Family carers of stroke survivors: needs, knowledge, satisfaction and competence in caring. Disability and Rehabilitation. 29, 2, 111-121. McCullagh E, Brigstocke G, Donaldson N, Kalra L (2005) Determinants of caregiving burden and quality of life in caregivers of stroke patients. Stroke. 36, 10, 2181-2186. Northern Health and Social Care Trust (2012) NHSCT
the context of the themes of identification of and interface with carers, provision of information and training for carers, guidance relating to employment and available support services for all, including provision for young carers. This is particularly relevant and timely given the projected increase in the number of stroke survivors and an increased reliance on informal carers to care for patients who have experienced stroke.
Conclusion The issues highlighted in this literature review are relevant to Northern Ireland and are a global concern because of the increasing incidence of stroke worldwide. Informal carers continue to have unmet psychological, information and social needs, and therefore are at increased risk of developing depression, strain and anxiety in the weeks and months following stroke. An accurate assessment by healthcare professionals of the needs of informal carers is important as part of an effective rehabilitation plan for the patient who has experienced stroke to improve quality of life of both patients and their carers NS
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