Addressing the burden of stroke caregivers: a literature review Deborah Jacks Camak
Aims and objectives. To examine the empirical literature regarding the risk of burden experienced by the older adult caregiver of the stroke survivor. The scope of this review was limited to older adult family members caring for older adult stroke survivors as evidenced in the literature written between the years of 2009–2014. Background. This article will explore published research within the past five years (2009–2014) that addresses the issue of burden among older adult caregivers of stroke survivors in addition to the implication for the changes needed within the nursing profession to mitigating the burden experienced by the caregiver. Many stroke survivors are in their 6th decade of life or older, with caregivers approximately the same age. This literature review specifically focuses on the role of nursing and the issue of caregiver burden. Design. Literature Review. Methods. A review of the literature published between 2009–2014 related to the lived experience of caregivers of stroke survivors and the role of nursing related to mitigating caregiver burden. Results. Numerous factors impact the lived experience of caregivers providing care for the stroke survivor. Assuming the role of caregiver has an inherent risk which can result in health compromises for the caregiver. It is the responsibility of the nurse to assess, design interventions and provide education to prepare the caregiver for the demands of the role. Conclusions. The literature review has shown that research regarding the risk of caregiver burden and the resulting health compromise is scarce. In addition, there is a lack of evidence-based nursing interventions aimed at assuaging the risk of caregiver burden. Relevance to clinical practice. Caregiver stress culminating in burden is commonly a reason for the eventual institutionalisation of the stroke survivor. Critically assessing and providing for the physical, psychosocial and educational support needs of stroke caregivers will assist in mitigating the daily burden experienced by the caregiver. Caregiver burden often results in psychological and physical health compromise for the caregiver. This literature review will address the role of the caregiver and the responsibilities of nursing to meet the needs of the caregiver.
Key words: burden, caregivers, caregiving burden, decision making, depression, discharge planning, emotional distress family caregiving, family nursing, mental health nursing, nursing, older adults, patient education and practice, stress, stroke Accepted for publication: 16 April 2015
Introduction Within medical literature, stroke is defined as a cerebral vascular accident resulting in an interruption of blood flow to an area of the brain from either a blood clot or the rupture of a blood vessel. The interruption of perfusion leads to ischemia, brain cellular damage, and often-permanent Author: Deborah Jacks Camak, MSN, RNC, Nursing Instructor, Dishman Department of Nursing, Lamar University, Beaumont, TX, USA
loss of the abilities of speech, mobility and memory. In the USA, stroke affects approximately 800,000 individuals annually making it one of the leading causes of disability (‘Stroke’ 2014). The occurrence of stroke is sudden causing chronic disability or impairment that can result in moderate or severe incapacitation. Even though stroke can be fatal there are approximately 65 million stroke survivors within Correspondence: Deborah Jacks Camak, Dishman Department of Nursing, Lamar University, 4400 MLK BLVD, P.O. Box 10009, Beaumont, TX 77710, USA. Telephone: +1 864 942 2887 or +1 409 880 8839. E-mail: [email protected]
© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 2376–2382, doi: 10.1111/jocn.12884
the USA (‘Stroke’ 2014). Many stroke survivors are in the 6th or later decades of life, with caregivers approximately the same age. Even though stroke can occur at any age, it most often occurs in the late middle-age or older adult years affecting individuals nearing or in retirement. Data obtained by Hall et al. (2012) reveal that more than twothirds of the stroke hospitalisations documented from 1989–2009 were for older adults greater than 65 years of age. According to Demaerschalk et al. (2010), ‘given that the majority of strokes occur in the elderly (age > 65 years), the prevalence of stroke is expected to increase dramatically with the lengthening of life expectancy and advancing age of our population’. Stroke often results in chronic disability for the stroke survivor and lifelong changes for the caregiver. Stroke resulting in impairment is not only stressful for the survivor but stressful for the caregiver as well. Providing continuous care for a loved one after a stroke often involves handling behavioural, physical, communication and memory impairments. Caregiving stress culminating in burden can result in negative emotional, social, environmental and health related difficulties for both the stroke survivor and the caregiver. According to the Family Caregiver Alliance (2014a), ‘family caregivers experience high rates of depression, stress, and other mental health problems’. It is critical for nurses to assess for, provide education for and address the burden experienced by the caregivers with the admission of the stroke survivor.
Methods Aim There is a paucity of research addressing the risk of caregiver burden and evidence based nursing interventions aimed at reducing the risk of. A literature review was used as the basis for identifying the stressors experienced among caregivers and the implications for nursing.
Search strategy A literature review was conducted using the following terms: ‘caregivers’, ‘stroke’, ‘burden’, ‘depression’, ‘family nursing’, ‘mental health nursing’, ‘stress’, ‘older adults’, ‘family caregiving’, ‘discharge planning’, ‘emotional distress’, ‘caregiving burden’, ‘decision making’, ‘patient education and practice’ and ‘nursing’. The databases used were: CINAHL, PubMed, MEDLINE, Expanded Academic, NIH.GOV, FCA.org and CDC.gov. A total of 42 articles published within the past five years were retrieved with 22 © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 2376–2382
published during the years of 2009 and 2014 selected for reference in this article. Of the 42 articles retrieved, 34 were research articles. Of the articles selected, each article was evaluated for its contribution to the body of literature related to caregiver burden and the role of the nurse in addressing caregiver needs. Finally, 15 research articles, two literature reviews and two reports from the Centers for Disease Control and Prevention [CDC], one report from the National Institute of Health [NIH] and two reports from FCA organisation were selected.
Inclusion criteria 1 Type of participants: caregivers of stroke survivors, informal caregivers, stroke survivors. 2 Outcome data: lived experience of caregiving, caregiving burden, educational needs of caregivers, relationship of caregivers with nurses and interventions to address the needs of caregivers. 3 Publication language and date: published in English from 2009–2014. 4 Type of research: systematic reviews, longitudinal, descriptive studies, mixed –methods longitudinal studies, interviews, correlation studies, cross-sectional study, survey, screening tools, scales and randomised experimental design.
Exclusion criteria Research that did not address: caregiver burden, the role of nursing related to the needs of caregivers and stroke survivors or interventions to mitigate caregiver burden.
Results The characteristics and contributions of the selected research studies and literature reviews are listed in Tables 1 and 2. The literature review exposed the lived experience of caregiver burden and the need for nursing to assess and address the needs of the caregiver immediately upon admission of the stroke survivor. The following issues related to the risk for caregiver burden and the role of nursing in mitigating the risk was identified.
Caregiver stress Research has shown that care-giving stress can result in negative psychological impact, anxiety and physical health decline for the caregiver (Das et al. 2010, King et al. 2010, Peyovi et al. 2012, Chen & Botticello 2013, Denno et al.
DJ Camak Table 1 Description of studies Author/year
Bakas et al. (2009)
40 stroke caregivers
Cameron et al. (2011)
300 stroke survivors and caregivers 146 stroke caregivers 3416 noncaregivers 17 stroke caregivers 199 stroke survivors and caregivers 153 caregivers
Caregiver reported less task difficulty and improved mood Caregivers reported distress
Memory Screening tool Interview Interview
Greenwood and Mackenzie (2010) Haley et al. (2010)
Anxiety and depression screening
King et al. (2010)
Lutz et al. (2011)
19 stroke survivors and 15 caregivers 4 adult children 159 stroke survivors and caregivers
Depressive scale, framington stroke risk scale physical examination, interview Moos and Schafer Model of coping, FIMS scale, survey Interview
Chen and Botticello (2013) Creasy et al. (2013) Das et al. (2010) Denno et al. (2013)
Ostwald et al. (2009)
Percieved stress scale, FIMS, F-COPES MOS survey
Peyovi et al. (2012)
Pierce et al. (2012)
Bakas caregiving outcomes scale, CES-D scale Interview
Shanmugham et al. (2009)
Beck depression scale
Shyu et al. (2010)
158 stroke survivors and caregivers
Experimental caregiver support programme
Table 2 Description of literature reviews Sample/design
Rigby et al. (2009) Demaerschalk et al. (2010)
Literature review Literature review
Caregiver burden is significant Cost linked to stroke is significant
2013). The sense of burden compounded by isolation from prior social networks and the overwhelming demands of providing daily care for the stroke survivor correlates with the risk for deleterious physical and psychological health outcomes particularly among the older adult caregivers. Stroke caregivers are often older adults struggling daily to meet the needs of the stroke survivor, many times without adequate or consistent support. Caregiver role assessment should be a nursing priority soon after admission of the stroke client to assuage care-giving stress by implementing appropriate support networks.
Caregiver strain is associated with increased stroke risk Caregiver strain is not always obvious. Support systems for caregivers is needed Caregivers are unprepared for their role Caregiver stress is associated with poor functioning in the stroke survivor and lack of social support Nurses should assess caregivers for the risk of depression, support needs Need for respite care and for nurses to address support needs of caregivers Dysfunctional problem solving ability are indirectly predictive of depression The programme reduced stress among the caregivers
Caregiver lack of preparation
Caregivers may be at risk for cogntive decline Nursing needs to engage caregivers Caregivers reported emotional and financial distress Caregivers are at a higher risk for anxiety and depression Anxiety among caregivers is widespread
Research has shown that caregivers have extensive information and educational needs that include medication administration, physical care, diet, safety with transfers and many other important topics. Caregivers are dependent upon health care providers, particularly nursing, for adequate preparation for the discharge. Unfortunately, research has shown that some caregivers are hesitant to ask crucial questions of the health care staff and may possess a misunderstanding as to the requirements of their role. In a recent research study of 28 family caregivers by Creasy et al. (2013) it was found that some caregivers felt disconnected, ignored and degraded by health care providers and were therefore, unsuccessful in obtaining answers to their information needs. In the research, the challenges expressed by caregivers include; a lack of communication with health care providers, lack of information related to the expected prognosis of stroke, in addition to postdischarge needs and © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 2376–2382
expectations (Creasy et al. 2013). Lutz et al. (2011) revealed overwhelming experiences expressed by caregivers that include, falls at home with the stroke survivor and fear of administering unfamiliar and multiple medications throughout the day. Shortened hospital stays and lack of reimbursement from insurance companies have forced health care facilities to provide care in a hurried, abbreviated manner. Nurses are pressed to provide care quickly with an increasingly staggering number of sicker patients. As Lutz et al. (2011) discussed, many caregivers are not fully aware of the demands of their role. Lack of communication with the health care professionals and lack of information compounds the symptoms of burden in caregivers and enhances their feelings of loneliness. Gaps in the research include a paucity of evidence-based educational programmes addressing the unique educational needs of caregivers beginning with the admission of the stroke survivor. In the research, the challenges expressed by caregivers include feelings of isolation, loneliness, ‘as if they were pushed off a cliff’, exhaustion, ‘running on empty’, an inability to sleep, the loss of self-identity, abandonment and lack of information related to the expected prognosis and care needs of the stroke survivor (King et al. 2010, Lutz et al. 2011, Pierce et al. 2012). A research study composed of 146 caregivers identified that caregiving stress may result in poor cognitive functioning contributing to memory loss in comparison with 3416 noncaregivers (Chen & Botticello 2013). The research reveals the lack of interventions to address the results of caregiver burden.
Caregiver risk for depression Often, the caregiver must assume the role without warning or preparation. The changes that occur due to a beloved family member experiencing a stroke event produce a crisis experience for the caregiver. These changes include role, economic and social adjustments in addition to appropriately meeting the physical and medical needs of the stroke survivor. Caregivers are suddenly responsible for providing assistance with activities of daily living such as hygiene, mobility, feeding and administering medication. As Ostwald et al. (2009) discovered in a study of 159 caregivers, the degree of physical impairment of the stroke survivor and the preparation for discharge provided by nursing can either mitigate or enhance the stress experienced by the caregiver. The burden experienced by the caregiver includes physical fatigue, psychological distress and loss of social relationships, financial worries and lack of social support. Rigby et al. (2009) defined, ‘Caregivers burden is a term © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 2376–2382
used to describe the weight or load carried by caregivers as a result of adopting the caregiver role’. As Denno et al. (2013) discussed, ‘Caregiver burden is often measured by the amount of time required by the caregiver, difficulty in tasks performed, and lifestyle changes as a result of caregiving’. Emotions associated with burden are pernicious and grievous. Pierce et al. (2012) revealed that as the physical stress of caregiving becomes overwhelming, caregivers experience dread and despair over the thought of another day of caregiving. One caregiver stated that ‘you just feel like you want a truck to hit you’ (Pierce et al. 2012). The research further reveals a lack of identified social support services available for caregivers such as respite care services and caregiver support organisations. Within the research, studies have shown that the development of depression among caregivers is a risk and stems from a lack of preparedness for the abrupt role change resulting from the stroke event, frustration and a lack of social support. The demands of providing daily care for the stroke survivor cause the caregiver to sacrifice opportunities for social participation in the community. Denno et al. (2013) surveyed 153 caregivers and found that increased caregiver burden was strongly correlated with caregiver anxiety and depression. In a research study of 45 caregivers, Greenwood and Mackenzie (2010) found that 511% developed anxiety within the first month postdischarge and 311% scored within the cut off for depression. Peyovi et al. (2012) conducted a correlation study to examine the relationship between the care-related life changes and the development of depression with 60 caregivers of stroke survivors. Of the 60 participants, 40% were depressed or at risk of developing depression due to caregiver burden (Peyovi et al. 2012). Shanmugham et al. (2009) studied 40 caregivers one month postdischarge to explore the correlation of dysfunctional problem-solving to the risk of depression. The study revealed that 44% of the participants were deemed as being at risk of developing depression and in addition, dysfunctional problem solving served as an important predictor of the risk of depression for the caregiver (Shanmugham et al. 2009). In a study of 300 stroke survivors and caregivers, Cameron et al. (2011) discovered that the inability to remain socially active in valued activities and maintain a sense of control over daily life contributes significantly to the caregivers’ psychological compromise. Haley et al. (2010) found that high caregiver strain increased the risk for stroke among caregivers to an estimated 23% higher risk in comparison with less stressful caregivers. Caregiver burden compounded with high stress and feelings of isolation significantly compromises the caregivers’ health. Gaps in the research include a lack of significance viewed by the health
care community towards the caregiver maintaining social interaction to mitigate loneliness and the lack of interventions towards addressing burden.
Assessment of caregivers The need for registered nurses skilled in assessment screening for caregiver burden will become urgent as the baby boomers age. Caregivers will rely upon nurses to assist with all issues of daily life such as, how to balance caregiving schedules, identifying community support services and how to reduce stress through relaxation techniques (King et al. 2010). Many caregivers are struggling to provide for their family members while balancing other responsibilities; therefore, nurses must be able to offer creative and appropriate assistance. The research clearly exposes the need for assessment of caregiver burden, interventions to assist caregivers and follow up support for both the caregiver and stroke survivor. The research has revealed a lack of evidence-based standards for the identification, treatment and follow-ups of caregiver burden.
Discussion Within the next 20 years, it is estimated that the older adult population will increase dramatically as the baby boomers age and profoundly affect the health care industry. Older adults typically have chronic diseases associated with being older in age that compromise their health often leading to functional decline. This demographic change underscores the urgency to address the issue of caregiver burden. According to the Centers for Disease Control and Prevention [CDC] (2011), there are more than 34 million unpaid caregivers within the USA with 83% being family caregivers. Caregivers often provide physically strenuous and emotionally taxing care to their family member with very little outside support. Caregivers without adequate support are at a greater risk of burnout and negative psychological impact. Often, the caregiver is the spouse of the stroke survivor who is thrust into the role suddenly and must provide the physically strenuous and emotionally taxing care with little outside support. Many authors have identified the needs of the caregivers of stroke survivors, describing their experience of physical and financial burden, loneliness and confinement. The constellation of mental, emotional and physical strain for the caregiver has the potential for negative physical and emotional outcomes. Difficulty with daily caregiving tasks can escalate emotional stress and eventually result in negative health decline for the caregiver. Stressors faced by the caregivers include anger, loneliness,
fear, role expectations, communication difficulties, financial pressures and lack of social support. Nurses are crucial as advocates for caregivers. Peyovi et al. (2012), identified that the life changes associated with caregiving had the potential to contribute to the risk of negative psychological outcomes for caregivers. Nurses have the ability to reduce the risk of developing negative physical and psychological health outcomes faced by older adult caregivers with the identification of risk factors that could result in burden. Hence, there is a need to provide continuing education for nurses with regard to the identification of risk factors among caregivers and the need to design interventions to mitigate the risk of the development of burden. The dearth of strategies for coping among caregivers is profound. Caregivers need to know that someone is available to assist, answer questions and provide guidance when needed. Bakas et al. (2009) conducted a research study involving 40 caregivers in a Telephone Assessment and Skill Building programme which they entitled, TASK. The research revealed significant increases in optimism, skill competency and coping with the needs of daily caregiving simply by nurses providing telephone based support for the caregivers during the first several weeks postdischarge (Bakas et al. 2009). When caregivers are aware that someone is available to discuss issues and provide guidance during this crisis time, it greatly reduces anxiety and loneliness.
Relevance to clinical practice Nursing implications begin with a clear understanding of the impact and consequences of caregiving upon the caregiver (Pierce et al. 2012). Nurses should identify and assess the caregiver as part of the admission process. Assessment of the caregiver for burden is an advanced practice that nurses prioritise during the admission of the stroke survivor. Research has shown that depression among caregivers is evident before discharge and stems from a lack of preparedness and social support. Providing appropriate care for the stroke survivor includes providing interventions to reduce or assuage burden in their caregivers. Nurses must remember that not all caregivers will be forthcoming with their educational needs or be proactive in preparing for the role of caregiver. It is the responsibility of the nurse to ensure that they have appropriately identified and provided preparatory education for the caregiver beginning with admission of the stroke survivor. As Creasy et al. (2013) discussed, many caregivers are unaware of the questions that they should be asking. Viewing caregivers as © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 2376–2382
a partner throughout the inpatient care trajectory will not only provide for educational moments but increase the caregiver’s confidence and competence after discharge (Creasy et al. 2013). Preparatory education should be holistically planned. The teaching of medication administration, transfer techniques, dietary needs and so forth is understood by nursing as information that must be shared; however, the nurse similarly should review with the caregiver strategies to address behavioural issues with the stroke survivor, reduce stress, manage schedules, identify support systems for respite care within the community and when the caregiver should seek assistance. Ostwald et al. (2009) emphasised that preparation for caregiving should include not only stress management skills and guidance in managing the physical, cognitive and behavioural changes in the stroke survivor but also the changing dynamics in the relationship between the caregiver, family and stroke survivor. Nursing and equally, the interdisciplinary team, should discuss the expectations regarding the changes in the stroke survivor as well as appropriate problem-solving methods with the caregiver in preparation for discharge. Shyu et al. (2010) discovered in a study of 158 stroke survivors and caregivers, that an individualised caregiver oriented educational programme assessing the caregivers educational, social, health and emotional support needs with appropriate consultation and referral prior to discharge of the stroke survivor improved the quality of life for the caregiver and the quality of care provided by the caregiver to the stroke survivor in addition to reducing the risk of institutionalisation of the stroke survivor. In summary, this literature review reveals the following: • The role of family caregiving is burdensome and most caregivers are not prepared to assume the responsibilities of providing continuous care for their family member.
Many family caregivers are older adults with multiple health needs of their own. As a profession, nursing needs to focus on the mental, physical and psychosocial health compromise that is inherent with the daily responsibilities of the older adult family caregiver. Nursing must assess the family caregiver for the risk of burden beginning with the admission of the stroke survivor.
Conclusion Stroke is a leading cause of disability affecting not only the stroke survivor but the caregiver as well. Abruptly, usually without forewarning, caregivers are thrust into a lifelong role change. Unfortunately, Nurses often focus on the needs of the stroke survivor without consideration of the needs of the caregiver which are vital and genuine. Burden among caregivers is corroborated by a plethora of research. The research fails to provide substantial evidence based resources to address the profound and formidable needs of the caregivers. Nurses should be on the forefront using ingenuity, sensitivity, creativity, knowledge of families, psychology, gerontology and case management to design evidence-based interventions to address the needs of caregivers.
Conflict of interest The authors declare there are no conflicts of interest.
Funding This is a literature review article and has not received any sources of funding.
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