chapter 7-family caregivers-kyna b. david
TRANSCRIPT
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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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DEFINITIONS OF FAMILY ANDFAMILY
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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DEFINITIONS OF FAMILY ANDFAMILY
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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T!e "#rdes ad "ee$tso% Family
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 " $t
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T!e "#rdes ad "ee$tso% Family
Caregivig /urdens associated with caregiving include (0udson, %&&93#apastavrou, haralambous, ; Tsangari, %&&73 *abow,
0auser, ; dams, %&&93 $herwood et al., %&&?3
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T!e "#rdes ad "ee$tso% Family
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 " $t
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T!e "#rdes ad "ee$tso% Family
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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T!e "#rdes ad "ee$tso% Family
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 " $t
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T!e "#rdes ad "ee$tso% Family
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$ts
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T!e "#rdes ad "ee$tso% Family
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$ts
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T!e "#rdes ad "ee$tso% Family
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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T!e "#rdes ad "ee$tso% Family
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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T&EORETICALFRAME'OR(S RELATED
TO FAMILY CAREGIVING aregiver transitions encompass the patients phases ofillness (2orthouse, Eatapodi, $chafenac"er, ;
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T&EORETICALFRAME'OR(S RELATED
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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T&EORETICALFRAME'OR(S RELATED
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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T&EORETICALFRAME'OR(S RELATED
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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T&EORETICALFRAME'OR(S RELATED
TO FAMILY CAREGIVING
Middle Range Theory of Transition
T&EORETICAL
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T&EORETICALFRAME'OR(S RELATED
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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T&EORETICALFRAME'OR(S RELATED
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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T&EORETICALFRAME'OR(S RELATED
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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T&EORETICALFRAME'OR(S RELATED
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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T&EORETICALFRAME'OR(S RELATED
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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T&EORETICALFRAME'OR(S RELATED
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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T&EORETICALFRAME'OR(S RELATED
TO FAMILY CAREGIVING
Middle Ran e Theor of Care iver Stress
T&EORETICAL
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T&EORETICALFRAME'OR(S RELATED
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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T&EORETICALFRAME'OR(S RELATED
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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T&EORETICALFRAME'OR(S RELATED
TO FAMILY CAREGIVING
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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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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Carig %or t!e Caregiver
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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Carig %or t!e Caregiver
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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Carig %or t!e Caregiver
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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Carig %or t!e Caregiver
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*+++