EACH YEAR, STROKE affects close to 800,000 people. It's the third leading cause of death in the United States, behind heart disease and cancer.1 Two-thirds of patients who survive need rehabilitation to regain some or all of their previous abilities, including speech, walking, writing, and other basic skills.2 Stroke is one of the leading causes of long-term disability in the United States with up to 30% of survivors permanently disabled.1 Most of these disabled survivors will be cared for by family members or other loved ones.
The emotional, physical, social, and financial suffering that occurs as a result of caring for a friend or relative with a chronic illness or disability has been coined caregiver burden.3 This article describes caregiver burden as experienced by those caring for stroke survivors and provides information and resources nurses can use to help patients and their caregivers manage their stressful circumstances.
Change, challenge, and uncertainty
Having a stroke is a life-changing event. Only 10% of stroke survivors return to their prestroke abilities.2 A person goes from a routine everyday life to one of change, challenge, and uncertainty within a matter of hours. Once the person is stabilized, the full extent of the injury can be determined and the recovery process may begin.
The stroke survivors' degree of disability is influenced by multiple factors, such as area of brain injured, age, and comorbidities such as hypertension, diabetes, or a previous stroke or brain injury.4
Every person is affected by stroke differently, but some signs and symptoms are predictable depending on the area of the brain affected. For example, patients who experience a stroke involving the left side of the brain will have right-sided hemiplegia, and vice versa.5 (See Tracing cerebral circulation for more examples.)
The success of recovery depends on four factors: The extent of the injury, the skill of the rehabilitation specialists, the support and cooperation of family and friends, and the timing of rehabilitation. According to the National Institute of Neurological Disorders and Stroke, caregiving by family and friends can be one of the most important factors in a stroke survivor's recovery.2
In the United States, almost 29% of the population serves as an unpaid caregiver to a family member.6 This includes caregivers of adults as well as children, demonstrating the magnitude of the caregiving role. Without this informal caregiver population, the care burden would shift onto government agencies such as Medicaid, and the quality of life and health status of the survivors would surely decline.7
The responsibility of caring for a loved one who's suffered a stroke is tremendous, complex, and different from most life-altering illnesses. Families and friends are thrust into the caregiver role in a matter of hours. They have no time to learn new skills, which leads to uncertainty and confusion.8
Most caregivers are unprepared to meet the challenges of this role due to the sudden nature of stroke onset and the extent of care the patient needs.9 Caregivers need information related to stroke, such as the likelihood of another stroke, individualized information related to the stroke survivors' particular challenges, and information about available social or financial resources.10 In addition, they may also need to learn how to help their loved one move about, eat, dress, speak, and perform any number of other tasks that were once taken for granted. For caregivers who lack financial and social resources, the challenges can be overwhelming.
Long-term caregiving can take a toll on the caregiver's mental and physical health. Chronic medical conditions such as hypertension, depression, and chronic obstructive pulmonary disease are more common among caregivers than noncaregivers.11 In one of the first studies to examine caregiver strain, Schulz and Beach found that caregivers who were providing care and experiencing caregiver strain had a 63% higher risk of dying than the noncaregiver control subjects.12
Many caregivers experience financial pressures as well. According to DeVol et al., lost wages for caregivers alone are estimated at $11 million a year.13
Besides affecting the caregiver, caregiver burden may also weigh heavily on the survivor. According to the National Elder Mistreatment Study (2010), 1 in 10 older adults has reported abuse or mistreatment.14 Twenty percent of elder abuse cases involve neglect, which is defined as “refusal or failure by those responsible to provide food, shelter, healthcare or protection for a vulnerable elder.”15 Self-neglect and passive neglect can also be considered types of elder abuse. Passive neglect, which simply involves a failure to meet the older adult's needs, isn't necessarily willful and may stem from the caregiver's inadequate knowledge or his or her own infirmity.16 One can see how some caregivers who are sleep deprived and lack social and financial support may become subject to charges of neglect.
Caregiving's positive side
While many negative outcomes are associated with caregiving, some patients and caregivers consider it a time of closeness and intimacy that's life-changing or even awe-inspiring. Many caregivers report that they “wouldn't change a thing” if given a chance to do things differently. However, even these caregivers need resources and interventions that will help them reap the rewards of caregiving and reduce the burden.1
How can nurses help ease the burden and support the rewards of someone caring for a stroke survivor? Nurses interact with family members, patients, and their caregivers daily. Nurses in all settings are in key positions to identify caregivers at risk for or living with caregiver burden. To better understand the risks that contribute to caregiver burden, however, nurses need a thorough understanding of the caregivers' experiences.
Factors contributing to caregiver burden
Many caregivers have had no experience with caregiving and don't know how to care for a disabled person. They may also have to take on other new responsibilities, such as household chores and financial management.7 Due to the acute needs of patients who've suffered a stroke, many caregivers put patients' needs first at the expense of their own.
Caregivers must learn to depend on others for help.8 If the caregiver must return to work, families may need to hire formal caregivers, which contributes to the overall financial burden.7
How well the caregiver copes depends on several variables, such as the patient's physical and cognitive impairments, the caregiver's sense of unity and coping styles, family member relationships, and social support. The greater the patient's physical and cognitive impairment, the greater the stress on the caregiver.
Research has shown that caregivers who have a passive coping style are more susceptible to caregiver burden than those with a more assertive coping style.16 Examples of a passive coping style include isolating oneself from others, worrying about the past, and focusing on negative emotions. Someone with an active coping style takes charge, asks for assistance, asks questions, and pursues answers; this approach is associated with more positive outcomes.17
Assessing for caregiver burden
Nurses caring for stroke patients may identify caregivers at highest risk for caregiver burden by assessing characteristics of both the patient and the caregiver. Caregivers who have a passive coping style, seem anxious or depressed, and/or lack family support may be at higher risk.18
Greater burden is also associated with greater care needs of seriously ill patients, which are in turn associated with older age, poorer physical functioning, incontinence, and low income.18 Nurses can assume that lower functional assessment scores correlate with a higher risk of caregiver burden. However, not all caregivers will have the same perception of burden, so it's important to ask.19
Many tools have been developed over the years to assess caregiver burden in those caring for persons with Alzheimer disease, cancer, lung diseases, and other chronic illnesses, but few have been created specifically for caregivers of stroke survivors. The Bakas Caregiving Outcomes Scale was created to determine outcomes of caregiving and factors associated with positive outcomes versus poor outcomes among caregivers of stroke survivors.20 Many other tools available to assess caregivers of other types of patients can be adapted for stroke survivors because of the similarities between patient and caregiver needs in families affected by stroke and other chronic conditions.
Whalen and Buchholz performed a systematic review of 112 caregiver burden screening tools and provided a summary of 74 tools.21 Not all of the tools will be appropriate for caregivers of stroke survivors, so it's important to identify tools that match your patient/caregiver population.
Choosing an assessment tool
One of the earliest caregiver burden assessment tools and the most widely used is the Zarit Burden Interview (ZBI).21 The revised ZBI is composed of 22 questions that caregivers answer using a 5-point Likert scale rating, from never to nearly always. Questions explore such issues as whether the caregiver feels angry, isolated, embarrassed, or inadequate in the caregiving role. Based on the total score, results range from little or no burden (0-21) to severe burden (61-88).
The ZBI was created to determine burden in those caring for relatives with Alzheimer disease, but it's been reproduced many times for other diseases in multiple languages, including Hebrew, Japanese, and Chinese. The Cronbach's alpha coefficient for the ZBI has been found to be between 0.69 and 0.89 when tested for three different advanced disease states including brain injury, which may include stroke.22 This score indicates a fairly high level of reliability as most researchers wish for a Cronbach's alpha of 0.7 or more.23
The American Medical Association (AMA) has devised a caregiver self-assessment questionnaire that can be found on their website.24 The Caregiver Self-assessment Questionnaire: How are You? is intended to be completed by caregivers and shared with their healthcare providers. The questionnaire has been tested and analyzed by statistical analysis but it was evaluated with only 150 subjects.24 The Cronbach's alpha was rated at 0.78, making it reliable.
This questionnaire is comprised of 16 yes-or-no questions plus two questions about the caregivers' stress level and general health that he or she rates on a scale of 1 to 10. Any question answered yes indicates a need for further investigation by the healthcare provider.24
The AMA self-assessment questionnaire is very easy to follow and provides a framework for the healthcare provider to discuss interventions with the caregiver. It provides suggestions for caregivers, such as reminders to make appointments for their own care, joining support groups, or speaking to someone about respite care for their loved one.24
The Modified Caregiver Strain Index (MCSI) was developed to determine the level of strain experienced by the caregiver.25 Strain is defined as the combination of stress and burden experienced by the caregiver. The MCSI is given at the onset of caregiving and again on a regular basis to determine changes in level of caregiving strain.
The MCSI uses 13 questions with a 3-point Likert scale. A response of yes, on a regular basis is given 2 points, yes, sometimes, 1 point, and no, 0 point.25
The MCSI targets four domains of strain: financial, physical, psychological, and social/personal. The MCSI has been tested and analyzed for validity and reliability. The Cronbach's alpha was 0.90.
The MCSI is free and easy to use; however, testing must be repeated over time to identify patterns of caregiver strain.
The Perceived Caregiver Burden Scale (PCB) was created by Stommel, Given, and Given in 1990 with a revision by Gupta in 1999.19,26 Stommel et al. noted that in order for an event, activity, or circumstance to be considered burdensome, the caregiver must view it that way.19 What may be considered burdensome by one caregiver may not seem burdensome to another.
The PCB measures the level of impact on finances, caregiver's schedule, health, and feelings of abandonment and entrapment.19 The Cronbach's alpha for the PCB ranged from 0.89 to 0.96.
The PCB comprises 31 items while the revised version contains 13 items. The revised PCB was used in several studies done in India.21
The Family Caregiver Alliance has created a toolkit to assist practitioners in assessing the needs of caregivers.27 The toolkit contains samples of assessment tools as well as resources for caregivers. Many of the assessment tools featured have been created by various state healthcare agencies from across the United States. The toolkit can be obtained from the Family Caregiver Alliance website.27 (See Caregiver resources.)
Each of the tools is useful for initiating a conversation about caregiver burden. Tools that are shorter are obviously easier and take less time to administer than the more involved tools.
Nurses should consider patient and caregiver needs and abilities when determining the best tool. Keep in mind that with any tool, the healthcare professional must be willing and able to spend time to discuss the results of the tool or screen. A tool that's used but not discussed or addressed is useless.
Needs and interventions
While it is often natural (and ideal) to view caregivers as members of the interdisciplinary team caring for a patient, it's important to realize that they too may have needs that require intervention. One of the most common contributing factors to caregiver burden is the lack of information and understanding. One study showed that 87% of caregivers felt they needed more information about topics related to caregiving, such as keeping their family member safe and finding time to care for themselves.8 Caregivers also needed information about the disease itself, including the likelihood of another stroke, and training on caring for their loved one. Other areas of informational need were related to financial entitlements and local services.10
Communication with the caregiver is important to determine areas of need. By providing individualized information and education, nurses can assist in alleviating caregiver burden. As part of an interdisciplinary team, nurses can also request input from other disciplines, such as social work, occupational therapy, and physical therapy.
Other issues, such as a lack of control and unpredictability, contribute to caregiver burden.10 In a study, caregivers often reported problems with paid caregivers, such as caregivers not arriving on time, possibly mistreating the patient, or stealing from them.10 Because of this lack of predictability, family caregivers often couldn't accomplish many routine activities, such as going to work, shopping, or performing other household chores. Some caregivers say that even if they do go out, they feel guilty leaving their loved one home.8
Nurses can advocate for the family by recommending federally approved agencies that hire bonded and secured employees who are reliable and caring. Hours of need are important and should be included in the evaluation process and in the contractual agreement with the home care service providers. Consistency of caregivers is important in maintaining predictability for both the patient and caregiver.
Caregivers in one study reported that at times, they couldn't provide the care that their loved one needed, such as helping him or her up after a fall or changing a bedbound patient's clothing without assistance.8 Education about proper lifting techniques, care of the bedbound patient, and emergency interventions is imperative for the family caregiver.
Berger, a stroke survivor and author, described learning how to fall while in the rehabilitation center so when he fell at home, both he and his wife were less anxious. Learning to fall helped him protect himself and minimize the risk of injury, giving him a level of comfort that reduced his stress about falling.28 Education of family members while the patient is hospitalized about tasks of care, such as incontinence care, and transfers between bed and chair, will give the caregiver more confidence and reduce anxiety.
Studies that have been done to evaluate the effectiveness of caregiver interventions have mixed results. It's difficult to identify an effective intervention when multiple interventions are being used, and some interventions may work better for one caregiver than another. However, what has been shown is that for high levels of caregiver burden, counseling is the most effective intervention.18 Education has also been found to have a positive effect in 66 percent of studies but surprisingly, peer support wasn't found to be effective.18
Interventions must be individualized to the caregiver and stroke survivors' particular situation, including education in much needed areas such as disease process, signs and symptoms, expectations for recovery, medications, self-care, and respite care.7 The Internet is a popular resource for many, so educate caregivers on how to identify reliable Internet resources.
Providing caregivers with resources for respite care, financial aid, and social support will give them more control over their life situation, so make sure you're well-informed for the benefit of both the survivor and the caregiver.6
Nurses can help caregivers take control
As our population ages, the incidence of stroke is likely to increase as well. People are living longer due to improved medical care, raising the number of people living with a chronic illness or disability who depend on family and friends for their care.27 Nurses can empower these caregivers to take control of their situation by providing education, resources, support, and interventions.
AARP Caregiving Resource Center
Administration on Aging, National Family Caregiver Support Program
http://www.aoa.gov (click on AoA programs)
American Foundation for the Blind
American Stroke Association
ARCH National Respite Network and Resource Center (minimal membership fee associated with active membership)
CaringBridge.org (nonprofit agency supporting free websites for helping families stay in touch when family members are ill)
Caring for Your Parents (TV special from PBS includes online caregiver's handbook)
Caregiver Action Network
CareGivingHelp.org (offers videos demonstrating caregiving skills and issues)
Disability.gov (also a federal government website for information and resources related to disability programs and services)
Elder Care Link (offers a free homecare provider referral service)
Family Caregiver Alliance: National Center on Caregiving
Full Circle of Care (helps family caregivers plan and make informed choices)
Healthcare.gov (managed by the U.S. Department of Health and Human Services)
Lighthouse International (offers assistance for people with vision disabilities)
National Alliance for Caregiving
National Institute on Aging
Rosalyn Carter Institute for Caregiving
Social Security Administration
Strength for Caring (sponsored by Johnson & Johnson)
Well Spouse Association (support for spousal caregivers)