chapter 7-family caregivers-kyna b. david

7/25/2019 Chapter 7-Family Caregivers-kyna b. David

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FAMILYCAREGIVERS

KYNA B. DAVID


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FAMILY CAREGIVERS

Familyis a cultural, legal, sociological, and individually

defined concept. Traditional definitions of family include

what we refer to as a:

nuclear family

father,

mother, and one or morechildren

extended family, which adds grandparents, aunts,

uncles, and cousins.

Today, blended families (those with parents who are ontheir second or more marriages with children from

previous marriages), as well as single-parent families,

same-sex families, and families that are childless by

choice, are more common.


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FAMILY CAREGIVERS

There are several definitions of family in the literature,

which describe the structure, function, interactions, and

symbolism of family.

First, structuraldefinitions describe families based onmembership and relationships between family

members.

second category for defining families is functional.

!f the function of families is to procreate and thennurture children, then the evaluation of family function

is based on the number of children born within the

family.


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FAMILY CAREGIVERS

third category of definitions of family is based on interactions

within the family group. !t loo"s at the role of family members,

the power dynamics within the family, and how family members

relate to each other. This broad category would allow for wor"

groups or societies to be defined as family as well as a group offriends who view themselves as a family

Finally, the last category of family definitions is a symbolic

representation and is defined by the individual family using

stories or symbols to defi ne membership. For example, the

family may be defined through its generational ownership of ahome in which many family members have been born and died.

The symbolic representation of a family may be also related to a

piece of land on which the family has lived or wor"ed for

decades and which represents the experience and livelihood of

the whole family.


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FAMILY CAREGIVERS

There are many different types of family groups based on

the structure, including (#olicy !nstitute for Family

!mpact $eminars, %&'):

couples without dependent children (married andunmarried)

single-parent families (never married, separated,

divorced, or widowed)

two-parent family household (not married, firstmarriage, and secondthird marriage)

foster families

adoptive families

estranged families


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FAMILY CAREGIVERS

nuclear, extended, or multigenerational households

none/one/two/multiple wage earners

living apart together families

The type of family groups varies by socioeconomiccharacteristics, such as:

education level

income level

!n addition, there are seven family life cycle stages, which

vary by family type, including families with:

no children

infants and preschoolers


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FAMILY CAREGIVERS

school-age children

dolescents

no dependent children

elderly dependents elderly dependents with adult childrengrandchildren.

Family groups also vary by the:

ethnicracialcultural bac"ground

religion, informal social networ" (friends and neighbors) relationships to community

the area where they live:

*ural

$uburban


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FAMILY CAREGIVERS

+rban

yths about the family may influence health

professionals assumptions, beliefs, and expectations

related to families and their interactions within thehealth care system.

The first is that family members have the best

interests of the patient at heart. This assumption

persists in the face of reports of domestic violence,

elder and child abuse, neglect, and abandonment.


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FAMILY CAREGIVERS

The second is the belief that children, especially

female children, have an obligation to care for

chronically ill or impaired family members,

especially elders. This expectation is shared by family,medical providers, and cultural norms, irrespective of

the burden this places on the individual, without

recognition of their additional or other family and

wor" responsibilities.


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DEFINITIONS OF FAMILY ANDFAMILY

CAREGIVERS familymay be defined as two or more people who havecome together for a self-defined common purpose (+.$.

ensus /ureau, %&&'). That purpose:

may be procreation may be simple companionship, but the persons

involved view themselves as family with the bonds

and responsibilities one expects from a family of

origin or blood relationship. family caregiver is a member of this family who has

chosen or who has been designated as the caregiver for

one or more family members who cannot manage normal

activities of daily living without help.


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CAREGIVERS There are several definitions of family caregivers, such as: Family (informal caregiver is any relative, partner, friend,

or neighbor who has a significant personal relationship

with, and provides a broad range of assistance for, an

individual with an acute, chronic, or disabling condition.

These individuals may be primary or secondary caregivers

and live with, or separately from, the person receiving care

(Family aregiver lliance, %&'b).

Family caregiver is someone who is responsible forattending to the daily needs of another person. 0e or she is

responsible for the physical, emotional, and often financial

support of another person who is unable to care for himself

or herself due to illness, in1ury, or disability (2ationallliance for are ivin %&' .


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CAREGIVERS There are also formal caregivers who are either trainedand paid for their services, or who serve as volunteers to

care for an individual. Formal caregivers may include

home health care providers, or other professionals orvolunteers (Family aregiver lliance, %&'b3 2ational

lliance for aregiving, %&').


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Statistics Related toFamily Caregivig

The typical recipient of care is a relative (!"#, including a

parent ($"# or a child (%.

The recipients of care are primarily female ("'#, with an

average age of 4' years. $eventy percent of the carerecipients are adults, 5& years or older.

l)heimer*s disease or dementia is the main problem for

caregivers ('%6 in %&&7).

The average period of caregiving is &." years, with '6 ofcaregivers caring for their loved one for more than 5 years.

The average caregiving time is '+.& hr/wee female

caregivers spend more caregiving time than do male

caregivers (%'.7 vs. '8.9 hrwee"3 2ational lliance foraregiving in collaboration with *#, %&&7).

T! " d d " $t


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T!e "#rdes ad "ee$tso% Family

Caregivig Family caregivers provide extraordinary uncompensatedcare, which is physically, emotionally, socially, and

financially demanding.

The caregiving role begins immediately at the point ofdiagnosis and continues over the illness tra1ectory (iven,

iven, ; $herwood, %&'%) with needs for information

about care and the patients disease ($ta1duhar et al.,

%&'&) that vary at the different stages of the patientsillness (


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Caregivig Family caregivers experience the physical strainassociated with caregiving and also fear, confusion,

powerlessness, and a sense of vulnerability despite their

attempts to maintain normalcy (Fun" et al., %&'&). They

often suffer from symptoms of anger, depression, and

anxiety and may become demorali=ed and exhausted

(>arit, %&&4).

aregivers themselves may experience increased physicalillness, exacerbation of comorbid conditions, and a

greater ris" of mortality (Family aregiver lliance,

%&&4a).

T! " d d " $t


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Caregivig /urdens associated with caregiving include (0udson, %&&93#apastavrou, haralambous, ; Tsangari, %&&73 *abow,

0auser, ; dams, %&&93 $herwood et al., %&&?3


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Caregivig s caregivers abandon leisure, religious, and socialactivities, there is heightened marital and family stress,

with long-term conseAuences for the health and the

stability of the family (Bumont, Bumont, ; ongeau,

%&&?).

hanges experienced across the cancer tra1ectory reAuire

caregivers to adapt to a new set of patient needs, creating

increased distress, yet caregivers are reluctant to identifythemselves as individuals who need support (Fun" et al.,

%&'&). This reflects the concept of legitimacy of needs

or caregiver ambivalence, as they do not want to

CbotherD professionals or shift attention away from theatient Fun" et al., %&'& .

T! " d d " $t


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Caregivig ccording to lu"ey (%&&8), some caregivers hide theirfeelings of loss and grief from the patient, which is

termed bridled grief (0ouldin, %&&83


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Caregivig study by Eim and $chul= (%&&?) compared the strains offamily caregivers of cancer patients to the strain of

caregivers of frail elders and dementia and diabetes patients.

The results showed that the level of strain of caregivers

of cancer patients is greater than the strain on caregivers

of elderly or diabetes patients.

/ut cancer caregiver strain is comparable to that of

caregivers of dementia patients. ancer and dementia

caregivers reported higher levels of:

physical strain

emotional stress

financial hardship as a result of providing care

T! " d d " $t


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Caregivig The crucial difference between cancer and dementiacaregivers was that:

cancer caregivers are distressed by various acute

medical conditions experienced by the patient, suchas surgery, chemotherapy, or radiation therapy (e.g.,

catheter care or managing patients emesis or

fatigue symptoms)

whereas caregivers of dementia patients aredistressed by the significant cognitive and

functional decline and behavioral changes, which

progress over time.

T!e " rdes ad "ee$ts


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Caregivig $tudies indicate that family caregivers describe feelingsof satisfaction for a 1ob well done, particularly when the

patient appreciates and ac"nowledges their care and

support, and when caregivers feel a sense of giving bac"

for the care and nurturing they themselves received

(2arayan, @ewis, Tornaotre, 0epburn, ; orcoran-#erry,

%&&'3 2eff, By, Fric", ; Easper, %&&83 $chuma"er, /ec",

; arren, %&&4).

The positive aspects associated with the caregiving

experience may act as a buffer against overwhelming

burden and traumatic grief (0udson, %&&93 augler et al.,

%&&53 $almon, Ewa", cAuaviva, /randt, ; gan, %&&53$teel, amblin, ; arr, %&&? .

T!e "#rdes ad "ee$ts


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Caregivig aregivers who have a positive approach to life are betterable to cope with caregiving demands ($ta1duhar, artin,

/arwich, ; Fyles, %&&?) and are motivated to maintain

their caregiving role (0igginson ; ao, %&&?).

T!e "#rdes ad "ee$ts


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Caregivig

T&EORETICAL


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T&EORETICALFRAME'OR(S RELATED

TO FAMILY CAREGIVING From a family theorist perspective, /ahr and /ahr (%&&')have also explored the concept of self-sacrifice and its

meaning in the family. They ta"e this stance in opposition

to the theories that stress individual choice and the

primacy of the individual over the good of the whole.

They assert that self-sacrificein the interest of the family

should be viewed as a virtue. /ahr and colleagues go on

to say that love is the motivation for this sacrifice,manifested as selfless generosity, and contrasts with the

ethic of personal gain that characteri=es social

relationships outside the family.

T&EORETICAL


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TO FAMILY CAREGIVING aregiver transitions encompass the patients phases ofillness (2orthouse, Eatapodi, $chafenac"er, ;


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TO FAMILY CAREGIVING +ncovering these ris"s may be enhanced byunderstanding the transition process (eleis et al.,

%&&&, p. '%). a1or concepts of this transition theory

(Figure 8.') include:

the nature of transitions, including the types,

patterns, and properties of transitions3

transition conditions (facilitators and inhibitors)

within the context of persons, community, andsociety3

patterns of response in terms of process and

outcome indicators3 and nursing therapeutics.

T&EORETICAL


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TO FAMILY CAREGIVING The types of transitions include: developmental,

$ituational

healthillness organi=ational.

The pattern of transitions can be:

$ingle

ultiple

$eAuential

$imultaneous

relatedunrelated

T&EORETICAL


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TO FAMILY CAREGIVING The properties of transition experiences include: wareness

ngagement

change and difference transition time span

ritical points and events

eleis et al. (%&&&) also identifies the transition conditions,

particularly the: importance of personal meaning and cultural beliefs and

attitudes

families socioeconomic status and their preparation and

"nowledge of the illness tra1ectory.

T&EORETICAL


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TO FAMILY CAREGIVING

Middle Range Theory of Transition

T&EORETICAL


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TO FAMILY CAREGIVING he earlin 0tress rocess 1odel(#earlin et al., '77&) and anumber of stress and coping measures are compared and are

helpful for researchers studying stress in caregivers.

he earlin 0tress rocess 1ode addresses the experience of

caregiving, including caregiving transitions and transitional

events that occur from one phase of the illness tra1ectory to

another and one stage of caregiving to another.

ccording to #earlin et al. ('77&), the five ma1or components

in caregivers experience include: 2aregiving contextGwhich includes:

sociodemographic characteristics of the caregiver and

patient

history of illness

T&EORETICAL


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TO FAMILY CAREGIVING history of caregiving caregiving living arrangements.

rimary stressorsGwhich arise directly from the

patients illness and may include the patients: symptoms or impairment

ability to perform activities of daily living

cognitive deficits

behavioral problems as well as stressors such as

caregiver burden, including the sub1ective

assessment of the degree to which the caregiver

perceives each event, including:

T&EORETICAL


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TO FAMILY CAREGIVING possible role overload (time and energy) role captivity (trapped in the caregiving role)

the loss of relationship (lost intimacy and social

exchanges).0econdary stressorsGwhich include:

tension and conflict in maintaining other roles in

ones life such as employment and family

relationships interruptions in other areas of the caregivers life

intrapsychic strains, which erode a persons self-

concept in terms of caregiver mastery and

competence.

T&EORETICAL


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TO FAMILY CAREGIVING3esourcesGwhich include: social, financial, and internal resources, which

increase the ability to manage stressful experiences

social support, which involves information,material, or financial support

as well as instrumental and emotional support and

perceived gains from the caregiving experience.

4utcomeswhich include positive and negativehealth outcomes related to caregivers.

T&EORETICAL


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TO FAMILY CAREGIVING !n addition, Tsai (%&&) has developed a middle rangetheory of caregiver stress. This theory reflects the

philosophy and framewor" of the *oy daptation odel.

The model and subseAuent theory is an input

processoutput type model (Figure 8.%) that ma"es four

assumptions:

aregivers can respond to change

aregivers perceptions determine how they respondto environmental stimuli

aregivers adaptation is a function of the

environmental stimuli and adaptation level

T&EORETICAL


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TO FAMILY CAREGIVING aregivers effectors (e.g., physical function, selfesteem mastery, role en1oyment, and marital

satisfaction) are results of chronic caregiving.

T&EORETICAL


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Middle Ran e Theor of Care iver Stress

T&EORETICAL


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TO FAMILY CAREGIVING Fletcher et al. (%&'%) developed a theoretical model ofcancer family caregiving experience. a1or elements of

this model include the following:

The stress process: primary stressors

secondary stressors

cognitive appraisal

cognitive and behavioral responses

outcomes of health and wellbeing

2ontextual factors:

personal

T&EORETICAL


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TO FAMILY CAREGIVING sociocultural economic, health care

2ancer diagnosis/initial treatment

*emission surveillance cancer-free survivorship

*ecurrence or second cancer end-of-life (H@) care

bereavement

T&EORETICAL


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Caner !a"il Care ivin #$ eriene


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FAMILY ASSESSMENT

aregiver well-being is closely lin"ed with patient

well-being (Eutner ; Eilbourn, %&&73 #orter, Eeefe,

arst, c/ride, ; /aucom, %&&?).

s patient performance status and Auality of life(IH@) decline over time (Jelanovich ;


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FAMILY ASSESSMENT

s patients are placed in more costly hospital or

nursing home settings (Fun" et al., %&'&), they may

also be at ris" of poor care or neglect (/ee, /arnes, ;

@u"er, %&&73 aslow, @evine, ; *einhard, %&&4). 2aregiver assessment is a systematic process of

gathering information about a caregiving situation to

(Feinberg ; 0auser, %&'%3 *# Fact $heet, p. '):

identify the specific problems, needs, strengths,

and resources of the family caregiver

as well as the ability of the caregiver to contribute

to the needs of the care recipient.


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FAMILY ASSESSMENT

systematic approach to assess the caregivers needs and

strengths is crucial in order to develop a dyadic

intervention that can improve the outcomes for both

caregivers and care recipients (Feinberg ; 0auser, %&'%).

aregiver assessment can be used for determining

eligibility for services, identifying unrecogni=ed or subtle

problems that might not be obvious although they have

great impact on successful caregiving.

The assessment process also promotes the development of

a strong, trusting, therapeutic relationship between the

clinician and the caregivers.


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FAMILY ASSESSMENT

The advantages of assessment as a basis for accessing

services and support are many, but >arit (%&&4) outlines

some specific benefits.

The first is the identification of problems in thecaregiving context, including but not limited to

interpersonal, relational, situational, or financial

problems. These problems may be potential or actual.

The second advantage is the clarification of roles andresponsibilities for family members, as well as a clear

estimate of the resources available versus those that

will be needed to provide the reAuired care.


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FAMILY ASSESSMENT

The assessment can also reveal actual and potential

stresses that can be dealt with before they reach

overwhelming and incapacitating anxiety and

depression leading to despair.

The structured and systematic nature of a good caregiver

assessment assures that important aspects will not be

missed and that a comprehensive approach is

implemented.


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FAMILY ASSESSMENT


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FAMILY ASSESSMENT


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FAMILY ASSESSMENT


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FAMILY ASSESSMENT


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Carig %or t!e Caregiver

Family caregivers must be recogni=ed as care recipients

in their own right. There is agreement that many times

caregivers simply burn out over the course of caregiving.

hysical, emotional, compassion fatigue sets in, and the

caregivers have no reserve to care for the recipients, much

less themselves. This leads to neglect of their own needs and

health and the development of depression and other

emotional complications as well as physical illness (Family

aregiver lliance, %&&4a).

Family caregivers have a right to their own support and

assessment of their needs, with their experience evaluated

Cnot as a proxy response for patients but as an outcome

itselfD ($teinhauser, %&&5).


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Their resources and capabilities are influenced by

multiple factors, such as (/ernard ; uarnaccia, %&&3

$ta1duhar et al., %&'&):

ender

ge

thnicity

ducation

socioeconomic status

geographic location


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fter one has completed a careful family assessment,

identification of the family strengths and wea"nesses that

will have an impact on the caregiver and or the care

recipient and their relationship should be identified,

clustered, and organi=ed in a way that they reflect the

priorities and function of the dyad. enerally, strategies

can be successful by addressing four general areas:

0etting realistic goals involves the identification of

"ey tas"s and responsibilities and then priorities for

what must and can be accomplished in an hour, a day,

or a wee" (Bemiris et al., %&'%3 $unnerhagen, Hlver,

; Francisco, %&'3


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5aving difficult discussions Bifficult discussions often

involve H@ sub1ects, and there are many areas of life that

are difficult to discuss for reasons of history, family

dynamics, cognitive dysfunction, or embarrassment

(herlin et al., %&&53


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Finding help There are two categories of finding help:

First, and possibly most straightforward, is help that is available

through social programs, support groups, and organi)ations

(Family aregiver lliance, %&'e3 2ational lliance for

aregiving, %&').

The second and more difficult tas" of finding help may be

enlisting the cooperation and contribution of other family

members in the care of the recipient (/arbosa, Figueiredo, $ousa,

; Bemain, %&''3 Family aregiver lliance, %&'b3 2ational

lliance for aregiving in collaboration with *#, %&&7).

Family history and dynamics may ma"e this impossible even with

difficult discussions directed at resolving conflicts that fester with

anger and resentment and or blame for past experiences. !t may

be impossible and inappropriate to reAuest some family members

to overcome past abuse that they have finally resolved in order to

provide care for the source of their abuse.

Evidece)"ased Family


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Evidece "ased FamilyCaregiver

Itervetios meta-analysis found that there were three types of

interventions offered to caregivers:

#sychoeducational

s"ill training therapeutic counseling

These interventions significantly improved caregiver

outcomes, such as burden, coping ability, self-efficacy, and IH@, although these interventions had

small to medium effects (2orthouse et al., %&'&).


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T&AN( YO*+++

chapter 7-family caregivers-kyna b. david

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