contact hours easing the burden e

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ACH 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, walk- ing, 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 mem- bers 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 care- giver burden as experienced by those caring for stroke survivors and provides information and resources nurses can use to help patients and their caregivers man- age stressful circumstances. Change, challenge, 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 depend- ing on the area of the brain affected. For example, patients who experi- ence a stroke involving the left side of the brain will have right-sided hemiplegia, and vice versa. 5 (See Tracing cerebral circulation.) The suc- cess of recovery depends on four factors: The extent of the injury, the skill of the rehabilitation specialists, the support and co-operation 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 By Inez Lynne Brandon, MSN, RN, CHPN, CNL, OCN Easing the burden E 2.0 CONTACT HOURS 20 December 2013 • Nursing Management www.nursingmanagement.com Copyright © 2013 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

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ACH 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, walk-

ing, 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 mem-

bers 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 care-

giver burden as experienced by

those caring for stroke survivors

and provides information and

resources nurses can use to help

patients and their caregivers man-

age stressful circumstances.

Change, challenge, 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 depend-

ing on the area of the brain affected.

For example, patients who experi-

ence a stroke involving the left side

of the brain will have right-sided

hemiplegia, and vice versa.5 (See

Tracing cerebral circulation.) The suc-

cess of recovery depends on four

factors: The extent of the injury, the

skill of the rehabilitation specialists,

the support and co-operation 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

By Inez Lynne Brandon, MSN, RN, CHPN, CNL, OCN

Easing the burden

E

2.0CONTACT HOURS

20 December 2013 • Nursing Management www.nursingmanagement.com

Copyright © 2013 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

nursingmanagement.com Nursing Management • December 2013 21

on family caregivers

Copyright © 2013 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

22 December 2013 • Nursing Management www.nursingmanagement.com

Easing the burden on family caregivers

“Informal” caregivers

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 mag-

nitude of the caregiving role. With-

out this informal caregiver popula-

tion, 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 uncer-

tainty 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 obstruc-

tive pulmonary disease are more

common among caregivers than

noncaregivers.11 In one of the first

studies to examine caregiver strain,

it was found that caregivers who

were providing care and experienc-

ing caregiver strain had a 63%

higher risk of dying than the non-

caregiver control subjects.12 Many

caregivers experience financial

pressures as well. 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 responsi-

ble to provide food, shelter, health-

care 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 infir-

mity.16 One can see how some care-

givers who are sleep deprived and

lack social and financial support may

become subject to charges of neglect.

Caregiving’s positive side

Although many negative outcomes

are associated with caregiving,

some patients and caregivers con-

sider it a time of closeness and inti-

macy 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 survi-

vor? Nurses interact with family

members, patients, and their care-

givers daily. Nurses in all settings

are in key positions to identify

caregivers at risk for or living with

caregiver burden. To better under-

stand the risks that contribute to

caregiver burden, however, nurses

need a thorough understanding of

the caregivers’ experiences.

Factors contributing to overload

Many caregivers have had no expe-

rience 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

For families and friends who are thrust intothe caregiver role in a matter of hours,the challenges can be overwhelming.

Copyright © 2013 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

www.nursingmanagement.com Nursing Management • December 2013 23

caregiver must return to work, fami-

lies may need to hire formal caregiv-

ers, 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 rela-

tionships, and social support. The

greater the patient’s physical and

cognitive impairment, the greater

the stress on the caregiver.

Research has shown that caregiv-

ers who have a passive coping style

are more susceptible to caregiver

burden than those with a more asser-

tive coping style.16 Examples of a pas-

sive 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 pur-

sues answers; this approach is associ-

ated with more positive outcomes.17

Assessing the issue

Nurses caring for stroke patients

may identify caregivers at highest

risk for caregiver burden by assess-

ing characteristics of both the

patient and the caregiver. Caregiv-

ers 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, incon-

tinence, 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 bur-

den, 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 cre-

ated specifically for caregivers of

stroke survivors. The Bakas Care-

giving Outcomes Scale was created

to determine outcomes of caregiv-

ing 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 fam-

ilies affected by stroke and other

chronic conditions.

Researchers performed a system-

atic 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 pop-

ulation.

Choosing an assessment tool

One of the earliest caregiver bur-

den assessment tools and the most

Tracing cerebral circulation4,5,29

Typical signs and symptoms of stroke vary depending on the location and brain structures involved. • If the middle cerebral artery is affected, patients may experience communi-

cation deficits such as inability to speak, read, understand, or write. Some patients also experience visual field cuts and hemiparesis.

• If the anterior cerebral artery is affected, patients may develop confusion, weakness, paralysis, urinary incontinence, lack of coordination, and person-ality change.

• If the posterior cerebral artery is affected, patients may experience changes in vision, sensory impairment, dyslexia, or coma.

• Deficits to the vertebral or basilar artery may lead to dizziness, weakness, visual deficits, slurred speech, amnesia, or ataxia.

Middle cerebralAnterior cerebral

Anterior spinal

Anterior communicatingInternal carotidPosterior communicatingPosterior cerebralBasilarVertebral

Copyright © 2013 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

24 December 2013 • Nursing Management www.nursingmanagement.com

Easing the burden on family caregivers

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 care-

giver feels angry, isolated, embar-

rassed, or inadequate in the care-

giving 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 dis-

ease, 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 dis-

ease 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 Associa-

tion (AMA) has devised a caregiver

self-assessment questionnaire that

can be found on its website.24 The

Caregiver Self-assessment Question-naire: How are You? is intended to

be completed by caregivers and

shared with their healthcare pro-

viders. 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 com-

prised of 16 yes-or-no questions

plus 2 questions about the caregiv-

ers’ 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 investi-

gation by the healthcare provider.24

The AMA self-assessment ques-

tionnaire is very easy to follow and

provides a framework for the

healthcare provider to discuss

interventions with the caregiver. It

provides suggestions for caregiv-

ers, such as reminders to make

appointments for their own care,

joining support groups, or speak-

ing to someone about respite care

for their loved one.24

The Modified Caregiver Strain Index (MCSI) was developed to

determine the level of strain expe-

rienced 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 deter-

mine 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, psycho-

logical, and social/personal. The

MCSI has been tested and ana-

lyzed 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 in 1990,

with a revision in 1999.19,26 It has

been 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 burden-

some 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 abandon-

ment 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 sev-

eral studies done in India.21

The Family Caregiver Alliance has

created a toolkit to assist practitio-

ners in assessing the needs of care-

givers.27 The toolkit contains sam-

ples 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

Although it’s often natural to view caregivers as members of

the interdisciplinary team caring for a patient, it’s important to

realize that they may also have needs that require intervention.

Copyright © 2013 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

www.nursingmanagement.com Nursing Management • December 2013 25

take less time to administer than

the more involved tools. Nurses

should consider patient and care-

giver 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

Although it’s often natural (and

ideal) to view caregivers as mem-

bers of the interdisciplinary team

caring for a patient, it’s important

to realize that they may also have

needs that require intervention. One

of the most common contributing

factors to caregiver burden is the

lack of information and under-

standing. One study showed that

87% of caregivers felt they needed

more information about topics

related to caregiving, such as keep-

ing 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 informa-

tional need were related to financial

entitlements and local services.10

Communication with the care-

giver is important to determine

areas of need. By providing individ-

ualized information and education,

nurses can assist in alleviating care-

giver burden. As part of an interdis-

ciplinary 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, con-

tribute 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 predictabil-

ity, 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 fam-

ily 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

Caregiver resources

AARP Caregiving Resource Centerhttp://www.aarp.org/relationships/caregivingPhone: 888-687-2277

Administration on Aging, National Family Caregiver-Support Programhttp://www.aoa.gov (click on AoA programs)Phone: 202-619-0724

American Foundation for the Blindhttp://www.afb.org/Phone: 800-232-5463

American Stroke Associationhttp://www.strokeassociation.org/STROKEORG/Phone: 888-478-7653

ARCH National Respite Network and Resource Center (minimal membership fee associated with active membership)http://www.archrespite.org/

Caregiving.comhttp://www.caregiving.com

CaringBridge.org (nonprofit agency support-ing free websites for helping families stay in touch when family members are ill)http://www.caringbridge.org/

Caring for Your Parents (TV special from PBS includes online caregiver’s handbook)http://www.pbs.org/wgbh/caringforyourparents

Caregiver Action Networkhttp://www.nfcacares.org1-800-896-3650

CareGivingHelp.org (offers videos demonstrating caregiving skills and issues)http://www.caregivinghelp.orgPhone: 773-508-1015

Caring Todayhttp://www.caringtoday.com

Disability.gov (also a federal government web-site for information and resources related to

disability programs and services)https://www.disability.gov/

Elder Care Link (offers a free homecare provider referral service)http://www.eldercarelink.com

Family Caregiver Alliance: National Center on Caregivinghttp://www.caregiver.orgPhone: 800-445-8106

Full Circle of Care (helps family caregivers plan and make informed choices)http://www.fullcirclecare.org

Healthcare.gov (managed by the U.S. Department of Health and Human Services)http://www.healthcare.gov/

Helpguide.orghttp://www.helpguide.org

Lighthouse International (offers assistance for people with vision disabilities)http://www.lighthouse.orgPhone: 1-800-829-0500

National Alliance for Caregivinghttp://www.caregiving.org

National Institute on Aginghttp://www.niapublications.org

Rosalyn Carter Institute for Caregivinghttp://www.rci.gsw.eduPhone: 229-928-1234

Social Security Administrationhttp://www.ssa.gov

Strength for Caring (sponsored by Johnson & Johnson)http://www.strengthforcaring.com

Well Spouse Association (support for spousal caregivers)http://www.wellspouse.org

Copyright © 2013 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

26 December 2013 • Nursing Management www.nursingmanagement.com

Easing the burden on family caregivers

and in the contractual agreement

with the home care service provid-

ers. Consistency of caregivers is

important in maintaining predict-

ability 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 bed-

bound patient’s clothing without

assistance.8 Education about proper

lifting techniques, care of the bed-

bound 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 cen-

ter 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 fall-

ing.28 Education of family members

while the patient is hospitalized

about tasks of care, such as inconti-

nence care, and transfers between

bed and chair, will give the care-

giver more confidence and reduce

anxiety.

Studies that have been done to

evaluate the effectiveness of care-

giver interventions have mixed

results. It’s difficult to identify an

effective intervention when multi-

ple 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 Educa-

tion has also been found to have a

positive effect in 66% of studies but,

surprisingly, peer support wasn’t

found to be effective.18

Interventions must be individu-

alized 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 edu-

cate caregivers on how to identify

reliable Internet resources. Provid-

ing 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

Help gain control

As our population ages, the inci-

dence of stroke is likely to increase

as well. People are living longer

due to improved medical care,

increasing the number of people

living with a chronic illness or dis-

ability who depend on family and

friends for their care.27 Nurses can

empower these caregivers to take

control of their situation by provid-

ing education, resources, support,

and interventions NM

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3. Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980;20(6):649-655.

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Work Prac. 1999;9(4):508-520.27. Family Caregiver Alliance. Caregivers count

too! A toolkit to help practitioners assess the needs of family caregivers. http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1695.

28. Berger PE, Mensh S. How to Conquer the

World With One Hand...And an Attitude. 2nd ed. Merryfield, VA: Positive Power Publishing; 2011.

29. Porth CM. Essentials of Pathophisiology:

Concepts of Altered Health States. 3rd ed. Philadelphia, PA: Wolters Kluwer/Lippincott, Williams and Wilkins; 2011: 942.

Inez Lynne Brandon is a clinical care coordinator at St. Francis Medical Center in Trenton, N.J.

The author has disclosed that she has no financial relationships related to this article.

DOI-10.1097/01.NUMA.0000437769.63768.ca

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