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This is to certify that the
thesis entitled
SATISFACTION WITH NURSING HOME CARE AND

CAREGIVER BURDEN AMONG FAMILY CAREGIVERS OF
INSTITUTIONALIZED ADULTS WITH DEMENTIA

presented by

Kathleen A. Thomas

has been accepted towards fulﬁllment
of the requirements for

M. S . degree in Nursing

 

 

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Major professor

Date ”111,9 9/

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MS U i: an Affirmative Action/Equal Opportunity Institution

 

 

 

 

 

LIBRARY
Michigan State
University

 

 

SATISFACTION WITH NURSING HOME CARE AND
CAREGIVER BURDEN AMONG FAMILY CAREGIVERS OF
INSTITUTIONALIZED ADULTS WITH DEMENTIA
By

Kathleen A. Thomas

A THESIS

Submitted to
Michigan State University
in partial fulﬁlhnent of the requirements
for the degree of

MASTER OF SCIENCE

College of Nursing

1996

ABSTRACT
SATISFACTION WITH NURSING HOME CARE AND
CAREGIVER BURDEN AMONG FAMILY CAREGIVERS OF
INSTITUTIONALIZED ADULTS WITH DEMENTIA
By

Kathleen A. Thomas

Family caregiving continues and feelings of burden associated with
family caregiving can persist in the nursing home setting. The purpose of this
study was to examine the relationship between family caregiver satisfaction
with nursing home care and caregiver burden as measured by the Caregiver
Reaction Assessment (Given, Given, Stommel, Collins, King, & Franklin,
1992). The sample was nonrandom, consisting of 97 white, well-educated
family caregivers of relatives with dementia who resided in a nursing home.
Impact on Schedule was negatively correlated with Satisfaction with
Technical Care among family caregivers (r = -25; 2-tailed p < .05; df = 92) of
nursing home residents with dementia. Caregiver Esteem was positively
correlated with Satisfaction with Preservative Care among spouse caregivers
(r = .38; 2-tailed p < .01; df = 56) of nursing home residents with dementia.

Implications for practice and research are presented.

TABLE OF CONTENTS

CHAPTER I: INTRODUCTION 1
CHAPTER 11: REVIEW OF THE LITERATURE
Caregiver Burden 7
Satisfaction With Nursing Home Care 13
Hypotheses 18
CHAPTER III: THEORETICAL FRAMEWORK 19
CHAPTER IV: METHODS 27
Measurement of Family Caregiver Burden 29
Measurement of Family Caregiver
Satisfaction With Nursing Home Care 31
CHAPTER V: RESULTS .
Description of the Sample 35
Interscale Correlation’s and Item Means 37
Results of Hypothesis Testing 38
Discussion 41
Implications for Practice 50
Suggestions for Further Research 52
Evaluation of Theoretical Framework 54
Conclusion 55
APPENDIX A 59

Letter of Approval from Michigan State University’s
Committee for Research Involving Human Subjects

APPENDIX B 60
Subscale Items for Two Dimensions of Family Caregiver Burden:
Caregiver Esteem and Impact on Schedule

iii

APPENDIX C 61
Subscale Items for Two Dimensions of Family Caregiver Satisfaction
With Nursing Home Care: Preservative and Technical Care

LIST OF REFERENCES 62

iv

Table 1

Table 2

Table 3

Table 4

LIST OF TABLES

Sociodemographic Characteristics of Family Caregivers
and Institutionalized Adults with Dementia 36

Mean Scores on Subscales of Caregiver Reactions
and Satisfaction with Nursing Home Care among
Family Caregivers of Institutionalized Adults with Dementia 38

Correlation’s between Subscales of Caregiver Reactions
and Satisfaction with Nursing Home Care among
Family Caregivers of Institutionalized Adults with Dementia 39

Correlation’s between Subscales of Caregiver Reactions

and Satisfaction with Nursing Home Care among

Spouse and Nonspouse Caregivers of

Institutionalized Adults with Dementia 401

LIST OF FIGURES

Figure 1 Neuman’s Systems Model

Figure 2 Family Caregiver Satisfaction With Nursing Home Care
Related to Two Dimensions of Caregiver Burden

21

26

Chapter I

INTRODUCTION

Advances in healthcare technology have lengthened the human life
span. Consequently, our society is experiencing growmg numbers of aging
adults, many of whom have impaired cognitive ability and rely on others for
assistance with activities of daily living (ADL) (Green, 1991; Weisensee &
Kjervik, 1989; Williams, 1989). The care of adults who are unable to
function independently is usually not provided by healthcare workers;
approximately 75-90% of this care is performed by family caregivers
(Brackley, 1992; Parker, Iversen, & Polich, 1989; Pierson & Irons, 1992;
Weisensee & Kjervik, 1989).

The family caregiver is frequently a woman, such as the wife or
daughter (Green, 1991; King, 1993; Temple & F awdry, 1992), which is not
surprising considering the nurturing role (Gilligan, 1982) and longevity of
women in our society. Women tend to live longer than men, and therefore are
more likely to be available to care for an impaired family member. Changing

trends in family dynamics, including more women in the work force, high
1

2
divorce rates, lack of geographical cohesiveness, and tendencies to bear

fewer children later in life, have implications for family caregivers (Williams,
1989). Longer life spans may mean that the duration of the caregiving
arrangement is increased, and smaller, geographically diverse families may
mean that fewer family members are available to share caregiving
responsibilities. The family caregiver, busy with a career or young children,
coping with a divorce, or experiencing personal health problems, may ﬁnd
caring for a cognitively impaired family member difﬁcult (Beach, 1993).
Family caregivers typically experience physical, psychosocial, and
economic distress as a result of the burdens of caring for a family member
with Alzheimer’s Disease or other dementia’s (Davis, 1992; Fletcher &
Winslow, 1991; Given, King, Collins, & Given, 1988; Parker, 'et al., 1989).
Interventions for family caregiver burden may include education, counseling,
support groups, adult day-care, respite services, and nursing home placement
of the care recipient (Lawton, Brody, Saperstein, & Grimes, 1989).
Generally, family caregivers cope remarkably well with the burdens of
caregiving. Institutionalization is a last resort that is often postponed until the
physical or mental health of the caregiver is at risk (Collins, Given, & Given,
1994; Neundorfer, 1991; Pruchno, Michaels, & Potashnik, 1990; Smith, &

Bengston, 1979).

3
Moving a family member to a nursing home, which has been described

as a family crisis (Ferris, 1992; McF all & Miller, 1992), may create
additional stress for the burdened caregiver. F arnily caregivers who place a
relative in a nursing home may feel they are not fulﬁlling familial obligations
and view nursing home placement as a breakdown in family unity (Cafferata
& Stone, 1991/1992; Callahan, 1988; Duffy, Hepburn, Christensen, &
Brugge-Wiger, 1989; Kuhlman, Wilson, Hutchinson, & Wallhagen, 1991;
Matthiesen, 1989). In a society that values freedom, justice, and
individuality, nursing homes are viewed as places where elderly are
warehoused following abandonment by their families; places where
dependent adults are neglected, abused, and denied human dignity (Collopy,
Boyle, & Jennings 1991). Despite these negative implications,nursing home
placement of an elderly family member is common and has even been
described as a normative transitional event in family development (Brody,
1985; Walsh, 1989).

Family caregivers of relatives with dementia may present to the
primary healthcare setting with symptoms of stress related to caregiver
burden. Interventions, such as adult day care or support groups, may be
inaccessible due to lack of availability or economic baniers (Collins, King, &

Kokinakis, 1994; Theis, MOSS, & Pearson, 1994). The growth of home

4
healthcare services may provide some relief for family caregivers, but it is not

reasonable to expect that home care for individuals with dementia will replace
the need for nursing home care. Current literature suggests that caregiver
burden is not reduced following institutionalization (Barber, 1993; Dellasega,
1991; King, Collins, Given, & Vredevoogd, 1991; Pratt, Wright, & Schmall,
1987; Stephens, Kinney, & Ogrocke, 1991; Stevens, Walsh, & Baldwin,
1993). Based on current literature, primary healthcare providers may hesitate
to recommend nursing home placement to family caregivers.

Continued caregiver burden among farmly caregivers following
institutionalization of a relative with dementia is surprising considering the
expectation that decreased responsibility for around-the-clock caregiving
Should reduce the burden among family caregivers. What are possible
explanations for family caregiver burden following institutionalization of a
relative with dementia? There are numerous variables which may effect the
sense of burden experienced by family caregivers of demented nursing home
residents (Brody, Dempsey, & Pruchno, 1990). Nursing home care is
expensive; the usual private-pay cost often exceeds $100 per day. Insurance
coverage, such as Medicare or other third party reimbursement, is frequently

inadequate or nonexistent (Marion Merrell Dow, 1992). Medicaid pays for

5
nursing home care only if the client is impoverished--oﬁen as a result of

paying privately for nursing home care.

In addition to economic burdens, family caregivers devote signiﬁcant
physical and/or emotional energy toward the care of relatives in nursing
homes. Family caregivers often maintain extensive contact with their
relatives following institutionalization, continuing to participate in caregiving
activities such as feeding, grooming, doing laundry, providing emotional
support, and transporting relatives for ancillary healthcare services (Moulton,
1993; Stephens, et al., 1991; Stevens, et al., 1993). Furthermore, family
caregivers of nursing home residents may grieve the loss of privacy and
intimacy they enjoyed prior to institutionalization, and this grieving process
may be emotionally burdensome.

This researcher has served as Director of Nursing in a small nursing
home in western Michigan for ﬁfteen years and has observed numerous
family caregivers of nursing home residents. Many family caregivers of
nursing home residents feel burdened relative to their caregiver role. Family
caregivers may cry and admit to feeling guilty or powerless because they
cannot continue to care for their relative at home. Nevertheless, this
researcher has observed that most family caregivers acknowledge their

limitations and accept the need for nursing home care.

6
For example, a 76 year old caregiver daughter had a 99 year old

mother with dementia who resided in the nursing home. One day the
daughter complained about her mother’s care, telling this researcher that she
had found her mother sitting slumped over in a bedside chair. The daughter
assumed that her mother had been neglected by nursing home staff because it
was obvious that her mother needed to lie down. The researcher comforted
the daughter by explaining that, immediately prior to the daughter’s visit, staff
had offered to lay her mother down, but her mother refused. The daughter
apologized tearfully, explaining, “It is hard to see Morn like this, but I can
handle it . . . as long as I know she is taken care of.”

This researcher proposed that a signiﬁcant variable associated with
family caregiver burden after a relative with dementia moves to a nursing
home is lack of satisfaction with nursing home care. The research question
was: Is there a relationship between family caregiver satisfaction with
nursing home care and caregiver burden among family caregivers of

institutionalized adults with dementia?

Chapter 11

REVIEW OF THE LITERATURE

F amilv Caregiver Burden

Caregiver burden may be deﬁned as the physical, psychological,
emotional, social, or ﬁnancial problems experienced by family members
caring for impaired older adults (Gwyther & George, 1986). Caregiver
burden may be objective or subjective. Objective burdens include the care-
recipient’s physical dependency needs, such as need for assistance with
bathing, dressing, toileting, and feeding, or behavioral problems, such as
wandering, inability to communicate, or resisting ADL assistance. Subjective
burden is the caregiver’s emotional response, such as feeling fatigued from
constant caregiving demands or embarrassed by the care-recipient’s
idiosyncratic behaviors.

Negative responses, or burdens, seem to be the dominant reactions
reported in the literature among family caregivers of relatives with dementia.
In contrast, and commonly overlooked in the literature, family caregiving for

relatives with dementia may result in positive reactions, such as enhanced
7

8
feelings of esteem related to the caregiver role. Positive reactions to family

caregiving seem reasonable considering the strong sense of responsibility and
intimacy among family members (Given, et al., 1992). Lack of positive
reactions to caregiving among family caregivers of relatives with dementia
may be burdensome.

Caregiver burden may be deﬁned relative to characteristics of the care-
recipient or the caregiver. Characteristics of the care-recipient that may be
burdensome include the diagnosis, such as Alzheimer’s Disease, which is a
common focus in the literature. Other diagnoses of care-recipients which
have been reported in the literature relative to family caregiver burden include
hip fractures, strokes, or cardiac disease (Vitaliano, Young, & Russo, 1991).
Characteristics of the family caregiver that may affect caregiver burden
include familial relationship to the care-recipient (i.e. spouse versus adult
child), gender, employment status, economic resources, social support, and
personal coping strategies (Vitaliano, et al., 1991).

Caregiver burden is likely to vary depending upon the availability and
utilization of healthcare services such as nutritional support, respite services,
Hospice care, adult day care, or home nursing services. Investment of
healthcare dollars for intervention strategies and evaluation of these strategies

may be based on family caregiver reactions. Family caregiver burden may be

9
affected by healthcare policy, such as family leave legislation (Given, et al.,

1992)

Caregiver burden has been described as uni-dimensional (Zarit & Zarit,
1987), but more recently is described as a multi-dirnensional concept (Given,
et al., 1992; Novak & Guest, 1989). Given, et a1. (1992) developed the
Caregiver Reaction Assessment (CRA) which includes ﬁve dimensions of
caregiver reactions including, (1) caregiver esteem, (2) lack of family support,
(3) impact on ﬁnances, (4) impact on schedule, and (5) impact on health.
Caregiver esteem is a positive reaction to family caregiving, whereas the
other dimensions of caregiver reactions are negative. Caregiver esteem is the
extent to which caregiving provides a personal sense of reward and
accomplishment; caregiving is enjoyable and does not cause reSentrnent.
Lack of family support is the extent to which the family works together so
that the caregiver does not feel abandoned. Impact on ﬁnances is the strain
on the ﬁnancial situation of the caregiver associated with caregiving. Impact
on schedule is the extent to which caregiving interrupts usual activities and
the degree to which the caregiver’s activities center on caregiving. The ﬁnal
dimension, impact on health, is the caregiver’s physical strength for
caregiving and adverse physical effects resulting from the caregiving

experience.

10
The environment in which family caregiving occurs has not been

examined sufﬁciently as it relates to caregiver burden; burdens of family
caregiving may vary signiﬁcantly depending upon whether the care-recipient
is at home or in a nursing home. The literature relative to family caregiver
burden is vast, but generally relates to family caregiving outside of an
institution. There seems to be an implicit assumption that family caregiving
ceases when institutionalized care commences, which is obviously a false
assumption based on the continued involvement of family caregivers
following nursing home placement (King, et al., 1991).

Representative samples of family caregivers have not been used to
study caregiver burden in the nursing home setting. For example, Dellasega
(1990) reported that family caregivers continued to experience Caregiver
burden following nursing home placement. Dellasega’s results can not be
generalized to family caregivers of nursing home residents because the
sample consisted of caregivers who were participants of a caregiver support
group. Family members who attend a caregiver support group may
experience caregiver burden differently or utilize different coping styles than
the general population of family caregivers of nursing home residents.
Despite limitations in Dellasega’s sample, numerous other studies (Barber,

1993; King, et al., 1991; Pratt, et al., 1987; Stephens, et al., 1991; Stevens, et

11
al., 1993) support the notion that family caregiver burden continues following

nursing home placement of the care recipient.

The experience of family caregivers of nursing home residents has not
been adequately explored. It is clear that family caregivers continue to
function in a caregiver role and continue to experience caregiver burden after
institutionalization of their family member (Johnson, Morton, & Knox, 1992;
Ross, Rosenthal, & Dawson, 1993; Stevens, et al., 1993). Continued
caregiver burden following institutionalization seems to contradict the logic
that reduced responsibility for hands-on care will relieve caregiver burden.
Considering the signiﬁcant investment of healthcare dollars in nursing home
care, continued burdens among family caregivers of nursing home residents is
disturbing.

It is reasonable to assume that the burdens of family caregivers outside
the nursing home differ from the burdens of family caregivers following
institutionalization. Describing and explaining the reactions of family
caregivers of nursing home residents is prerequisite to designing effective
interventions. This study aims to improve understanding of family caregiver
reactions following nursing home placement of a demented relative.

For the purpose of this study, caregiver burden among family

caregivers of institutionalized adults with dementia was deﬁned relative to

12
two dimensions of caregiver reactions: caregiver esteem and impact on

schedule. Caregiver esteem may be related to nursing home satisfaction
because the family caregiver has contracted for nursing home care as a
substitute for family caregiving. The nursing home, as a surrogate for family
in-home care, is providing care which the family would provide if the family
caregiver were not too burdened to persevere. Ifthe family caregiver is
satisﬁed with nursing home care, the family caregiver may feel that their
caregiving responsibility has been fulﬁlled. If the family caregiver is not
satisﬁed with nursing home care, the family caregiver may feel a sense of low
caregiver esteem due to failure to arrange adequate care. Therefore,
satisfaction with nursing home care infers quality family caregiving, which
has implications for the esteem of the family caregiver.

Impact on schedule may be related to nursing home satisfaction
because a family caregiver, dissatisﬁed with nursing home care, may visit the
nursing home frequently to monitor nursing home care or provide hands-on
care that is perceived to be inadequate in the nursing home. Traveling to and
from the nursing home to monitor care may become the central activity in the
farrrily caregiver’s schedule and may interfere with other activities. The
family caregiver who is satisﬁed with nursing home care may visit when

convenient, not based on a schedule of perceived caregiving demands.

l3
Fmthermore, the family caregiver who is satisﬁed with nursing home care

may feel comfortable limiting the frequency and duration of nursing home
visits, thus resulting in less impact on their daily schedule.
Family Caregiver Satisfaction With Nursingilome Care

Society views nursing homes unfavorably in terms of quality of care.
Not only has government regulation of nursing homes been ineffective in
assuring nursing home quality, government over-regulation of nursing homes
has added barriers to quality in nursing home care (Collopy, et al., 1991).
There is an impetus in healthcare to improve quality by focusing on outcomes,
one of which is client satisfaction. Unfortunately, literature about quality in
nursing home care continues to focus largely on structure and process criteria,
such as staffing ratios and infection control practices (Bliesmer& Earle,
1993; Menzey 1989; O’Leary, 1992). A few studies have attempted to elicit
resident satisfaction with nursing home care (Kane, 1983), but these studies
are obviously limited to subjects who are able to respond in a meaningful
way, which excludes large numbers of nursing home residents with dementia.
Family caregivers of nursing home residents continue to be involved in a
caregiving role following institutionalization, monitoring nursing home care to

assure quality. Therefore, quality of care for nursing home residents with

14
dementia may be assessed based on family caregiver satisfaction with nursing

home care.

Family caregivers often function as surrogate decision makers, formally
or informally, for nursing home residents, particularly those with dementia
(Corcoran, 1993; Montrniny, 1990). The ethical presumption is that family
caregivers are likely to know the wishes and sensibilities of their relatives and
to make decisions in their relatives’ best interests (Kapp, 1991). Family
caregivers of nursing home residents with dementia oﬁen determine where the
client lives and whether care is satisfactory. The literature suggests that
families may be generally dissatisﬁed with nursing home care (Collins,
Stommel, Wang, & Given, 1994).

Prawitz, Lawrence, Draughn, & Wozniak (1991) found that family
caregivers of nursing home residents in general (not just those with dementia)
were more satisﬁed with nursing home care after they investigated several
homes and family members agreed about the home selected. Family
caregivers were generally less satisﬁed when they were forced to make an
immediate decision about placement, felt they lacked sufﬁcient time to
investigate homes, and chose the ﬁrst home with space available. This

researcher found no references in the literature that reported family caregiver

1 5
satisfaction with nursing home care among family caregivers of relatives with

dementia.

Since family caregivers function as surrogate decision makers for
nursing home residents with dementia, it is reasonable to review literature that
describes nursing home residents’ satisfaction with nursing home care. The
assumption is that, since the family caregiver is acting as a surrogate decision
maker, the family caregiver will accurately judge qualities in nursing home
care consistent with the resident’s sensibilities if the resident were able to
assess or communicate her or his own satisfaction with nursing home care. A
further assumption is that the fanrily caregiver values qualities in nursing
home care similar to those that the demented nursing home resident values.

Satisfaction with nursing home care is a subjective variable that is
based on cultural values and beliefs. Knox & Upchurch (1992) found that
nursing home residents value the following aspects of nursing home care
(listed in descending order): family and visitors, clean and comfortable
surroundings, good food, caring staff, feeling useful, affection, religious
activities, social activities, ﬂexibility in daily schedule, and privacy. Joiner &
Freudiger (1993) used the Home Satisfaction Scale which asks residents to

rate the following phases of life in the institution: food, medical care, rules

l6
and regulations, cleanliness, living quarters, religious activities, recreation,

and employees in the home.

Bowers (1988) described two dimensions of caregiving in nursing
homes--technical and preservative. Either technical Or preservative care may
be provided by family or facility caregivers. Technical care involves
providing for physical or material needs of the resident which may be
provided by the family caregiver but is usually expected of nursing home
staff Bowers reported that families perceive technical expertise as
prerequisite to satisfactory nursing home care. “Families expect staff to have
technical knowledge about medications, disease processes, . . . as well as
technical skills for performing skilled procedures. . . .Failure to recognize
symptoms of an accelerated or new disease process, or the side effects of
medications was consistently interpreted as evidence of poor quality care . . .
Safe and efﬁcient transfer of a resident from bed to chair or toilet were
consistent expectations (Bowers, 1988, p. 365).”

Preservative care refers to care which aims to preserve the nursing
home resident’s sense of self and is often performed by family caregivers.
The purposes of preservative care include maintaining family connectedness,
resident dignity, resident hopes of recovery, and resident control of the

environment. Preservative care includes psychosocial tasks such as

17
reminiscing, personalizing the resident’s room, celebrating birthdays,

selecting and caring for clothing, and reading and writing letters (Bowers,
1988)

F arnily members may view the performance of technical care by
nursing home staff as a threat to their more important aim of preservative
care. For example, nursing home staff may encourage a resident in self-
feeding with the aim to rehabilitate or maintain ﬁrnctional ability (technical
care). Family caregivers may prefer that nursing home staff feed their relative
to avoid spillage of food during self-feeding which may be perceived as
undigniﬁed (preservative care). F arnily caregivers of nursing home residents
may attribute responsibility for the performance of most tasks to the nursing
home staff, but hold themselves responsible for monitoring and evaluating the
quality of care and providing the staff with biographical information which
enables staff to provide preservative care (Bowers, 1988).

Family caregivers of nursing home residents expect that satisfactory
preservative care can exist without satisfactory technical care, but
preservative care is an essential component of satisfactory technical care
(Bowers, 1988). Thus, family caregivers do not expect themselves to be
technically proﬁcient, but family caregivers do expect nursing home

caregivers to treat residents as uniquely human individuals, based on input

18
from family caregivers. For the purpose of this study, satisfaction with

nursing home care was deﬁned as the family caregiver’s perception that the
nursing home was providing an acceptable level of preservative and technical
care.

Hypotheses

The following hypotheses were tested in this study:

1. Family caregiver satisfaction with preservative nursing home care is
positively correlated with caregiver esteem.

2. Family caregiver satisfaction with preservative nursing home care is
negatively correlated with impact on schedule.

3. Family caregiver satisfaction with technical nursing home care is
positively correlated with caregiver esteem.

4. Family caregiver satisfaction with technical nursing home care is

negatively correlated with impact on schedule.

Chapter III

THEORETICAL FRAMEWORK

Neuman’s Systems Model is the conceptual ﬁamework which guided
this study. Betty Neuman, the nurse theorist who developed Neuman’s
Systems Model, had a background in mental health nursing and her model is
useful for studying family caregivers of dementia clients. Neuman’s Systems
Model is one of open systems in which complex elements are organized and
interacting. The client system is viewed as concentric rings surrounding a
central core (Figure l). The core contains basic survival elements and usual
patterns of response. Lines of resistance immediately surround the core and
function to protect it. The outer-most ring, called the ﬂexible line of defense,
protects the normal line of defense, which surrounds the lines of resistance
and represents the usual state of wellness. The client system is composed of
protective elements categorized within ﬁve variables--physiological,
psychological, sociocultural, developmental, and spiritual--which are

contained in all client systems and exist in each line of resistance and defense

l9

20
(Neuman, 1989). The client system may include individuals, groups, such as

families, or entire communities.

According to Neuman’s Model, health is perceived as a continuum
based on energy. The extremes on the continuum are optimal wellness, with
maximum available energy, and death, which is total energy depletion. When
elements of the system are in harmony, balanced, or stable, energy is
conserved, and wellness is optimized. Energy may be maximized by
strengthening any of the lines of resistance or defense. When stressors from
the internal, external, or created environment impact upon the system, energy
is used to maintain stability. If energy supplies are insufficient to maintain
stability, stressors penetrate the normal line of defense, and wellness is

compromised. If stressors penetrate the core, serious illness or death occurs

(Nemnan, 1990).

21

FlexiblgLine_oj Defense '

, / USual Line of Defense\ ‘ \

 

Figure 1 Neuman’s Systems Model

22
The environment is deﬁned as all factors surrounding the client system.

The relationship between the client and the environment is reciprocal or
circular in nature, including input, output, and feedback. Neuman deﬁnes
three environmentS--intemal, external, and created. The internal environment
includes all forces contained within the boundaries of the client system. The
external environment includes all forces outside the boundaries of the client
system (N euman, 1989). Neuman deﬁnes the created environment as,
. . the protective, unconsciously derived environment that exists for all
clients . . . The created environment, which includes elements of both the
internal and external environments, acts as an intrapersonal protective shield
or safety net against the reality of the internal and extemal environments; the
true nature or reality of client and environmental exchanges (1990, p. 129).”
Although elements of the created environment conserve energy by protecting
the system, the created environment may become the source of stressors
relative to the degree that the created environment offers protectiveness for
the system.

The internal, external, or created environment is the source of stressors
which are “tension-producing stimuli or forces (Neuman, 1989, p. 23)” that
impact upon the client system, potentially disrupting system stability.

Stressors may be known or unknown, real or potential. More than one

23
stressor may occur simultaneously, and any stressor inﬂuences the client’s

reaction to other stressors to some degree. Stressors may vary in intensity,
and the impact of similar stressors may vary depending on system resistance
(Neuman, 1989). 9

According to Neuman (1989), primary, secondary, and tertiary levels
of prevention as intervention may be implemented to promote, maintain, or
regain optimal wellness. Primary prevention includes interventions which
mitigate potential stressors or strengthen system defense against stressors.
Secondary prevention includes interventions which reduce system reaction to
environmental stressors and maintain system stability in response to stressors.
Tertiary prevention includes interventions which restore system stability
following the impact of stressors.

For the purpose of this study, the client system is the family caregiver
of a demented nursing home resident. The burden of caring for a demented
family member requires energy; therefore, caregiver burden is a stressor
which threatens system stability. Caregiver burden is both objective and
subjective and may be a stressor from the internal, external, and/or created
environments. Family caregivers vary in the amount of energy available to
respond to the burden of caring for a demented relative. Factors which may

inﬂuence the amount of energy available to the family caregiver include, but

24
are not limited to, economic resources, functional status of the caregiver, and

knowledge of healthcare practices. Care-recipient variables which may
increase the intensity of caregiver burden and, therefore, consume signiﬁcant
energy may include physical dependency or improper social functioning
commonly associated with dementia (Bull, 1990; Given, Collins, & Given,
1988; Given et al., 1988; Haley & Pardo, 1989).

Primary prevention as intervention for caregiver burden among family
caregivers of relatives with dementia outside of the nursing home setting
which may strengthen the ﬂexible line of defense and optimize wellness in the
family caregiver system includes family counseling or caregiver support
groups. Secondary prevention as intervention that may reduce the impact of
caregiver burden so that system stability is maintained includes visiting nurse
or respite services. When the stress of caring for a demented relative outside
of the nursing home depletes energy to the extent that the family caregiver’s
normal line of defense is penetrated in Spite of secondary intervention, 3 need
for nursing home care exists. Tertiary prevention as intervention for caregiver
burden among family caregivers of relatives with dementia includes nursing
home care for the demented relative. Satisfactory nursing home care
strengthens the lines of resistance because caregiving activities are performed

by nursing home staff, conserving energy within the family caregiver system

25
Many stressors, known or unknown, may consume energy and threaten

system stability of the family caregiver of the demented nursing home
resident. Two dimensions of caregiver reactions, impact on schedule or lack
of caregiver esteem, are stressors which effect stability of the family caregiver
system following nursing home placement of a demented family member
(Figure 2).

Family caregiver satisfaction with nursing home care is a system
variable which strengthens the lines of resistance so that the core of the
family caregiver system is protected and stability may be restored to the
system following nursing home placement of a demented relative.
Dissatisfaction with nursing home care may be an additional stressor upon the
family caregiver system resulting in further instability in the system. Nursing
home placement as a tertiary intervention for caregiver burden may not
restore the family caregiver system to the level of the ﬂexible line of defense
because other stressors may consume energy. Nevertheless, family caregiver
satisfaction with nursing home care may resist caregiver burden so that the
core of the family caregiver system is protected. Further interventions, such

as family counseling, may restore the normal line of defense.

26

Caregiver’s Impact on
(low) Esteem Schedule

/ - ‘ \ \
,Famrly Carggwer Satrsfactron‘
/ yfrth/Nirrsing Horrfe\Care(
\
I /

 

Figure 2 Family Caregiver Satisfaction With Nursing Home Care
Related to Two Dimensions of Caregiver Burden

Chapter IV

METHODS

The current study utilized pre-existing data from a larger research
project entitled, “The Impact of Alzheirners Disease on Family Caregivers”
(NIMH #2 R0] 41766, Clare Collins, RN, PhD, F .A.A.N., principle
investigator). The study was funded by the National Institute of Mental
Health and canied out by the College of Nursing at Michigan State University
from 1989 to 1993. A longitudinal survey design was used with three
measurement points during the four year period of data collection. At each
data collection point, family caregivers participated in a one and one-half hour
telephone interview and completed a mailed self-administered booklet. One
of the many objectives of the larger study was to describe family caregiver
reactions to the caregiver role following institutionalization of their family
member. Family caregivers who experienced nursing home placement of
their relative continued to participate in the larger study.

In the larger study, a convenience sample of 350 family caregivers was

recruited through mailings to potential participants located through the
27

28
Alzheimers Association and other healthcare agencies in southwestern

Michigan. Caregiver/care-recipient dyads who met the following criteria
were enrolled in the study: (1) the caregiver was self-identiﬁed as the family
member providing the most care to a relative with Alzheimers Disease or
related dementia; (2) the care-recipient was at least 55 years of age and
dependent in at least one ADL, such as need for assistance with bathing,
dressing, or feeding, and one instrumental ADL, such as need for assistance
with grocery shopping, preparing meals, or managing ﬁnances; (3) the care-
recipient had received a diagnosis of Alzheimers Disease or related disorder
(by caregiver report; no independent conﬁrmation of diagnosis was made);
and (4) the caregiver and care-recipient resided outside of an institution at the
time of entry into the study. Caregivers from the larger study who
subsequently institutionalized their relative following enrollment in the larger
study compose the sample for the current study (N = 97).

Consent procedures for the original study conformed to the guidelines
of the Department of Health and Human Services and were approved by
Michigan State University’s Committee for Research Involving Human
Subjects (UCRIHS). Procedures consisted of a verbal explanation of the
study by the interviewer at the screening interview, completion of a written

consent form at the ﬁrst interview, and explanation followed by verbal

29
reafﬁrmation of consent at each subsequent telephone interview. Additional

approval from Michigan State University’s UCRIHS was obtained prior to
data analysis for the current study (Appendix A).
Measurement of Family Caregiver Burden

Two subscales of the CRA (Given, et al., 1992), Caregiver Esteem and
Impact on Schedule, were used to measure caregiver burden in this study.
The CRA is administered in a 5-point Likert questionnaire format, with
responses ranging from, (1) strongly disagree, to (5) strongly agree. Items on
the Caregiver Esteem and Impact on Schedule subscales are positively coded
with the exception of one item on the Caregiver Esteem subscale, “I resent
having to care for _,” which is coded in a negative direction. A lower
score on the Caregiver Esteem subscale or a higher score on the Impact on
Schedule subscale represents greater burden. The CRA is intended to be
used to study family caregivers of disabled, dependent, or ill older adults,
regardless of the diagnoses of the care recipient, familial relationship of the
caregiver to the care recipient, the setting in which care is given, or healthcare
agencies involved. The CRA was published in 1992 (Given, et al.) and has
been used extensively to study family caregiving. Nevertheless, prior to the
present study, the CRA has not been used to analyze reactions of family

caregivers with relatives in a nursing home.

30
An adequate sample (N = 754) of caregivers, was studied in the

development of the CRA. During the exploratory phase of the CRA’S
development 377 family caregivers of elderly patients were studied; 267 were
caregivers of family members with physical impairments, and 110 were
caregivers of family members with dementia. 185 cases from the exploratory
sample were compared longitudinally at six-month intervals in three waves.
During the conﬁrmatory phase of the CRA’S development, 37 7 different
caregivers were studied; 276 were caregivers of family members who had
cancer and 101 were caregivers of family members with dementia.

Several methods for assuring the validity of the CRA were
demonstrated during the CRA’S development. Initially, each member of a
team of ﬁve researchers from the College of Nursing at Michigan State
University agreed on the face validity of any item that was considered relative
to a dimension of the CRA. Construct validity of the CRA was further
established by correlating caregiver depression and the number of care-
recipient ADL dependencies with the ﬁve subscales of the CRA. Final
evidence of construct validity included the stability of factor structures across
comparison groups of caregivers and measurement occasions during three

waves of longitudinal analysis.

31
Reliability of the ﬁve subscales of the CRA is demonstrated by internal

consistency; Cronbach’s Alpha ranged from .80 to .90 for the ﬁve subscales
and mean inter-item correlation’s range from .47 to .60 (Given et al., 1992)
for each of the ﬁve subscales. Items that compose the Caregiver Esteem and
Impact on Schedule subscales of the CRA are listed in Appendix B.
Cronbach’s alpha for the Caregiver Esteem and Impact on Schedule subscales
respectively was .90 and .82, and the mean inter-item correlation’s for the
Caregiver Esteem and Impact on Schedule subscales were .56 and .47
respectively. The interscale correlation between Caregiver Esteem and
Impact on Schedule subscales of the CRA was -.17 9 (2 tailed p < .01) which
is a low correlation and supports the notion that these subscales represent two
distinct dimensions of caregiver reactions (Given et al., 1992).
Measurement of Family Caregiver Satisfaction with NursinLHome Care
Family caregiver satisfaction with nursing home care was measured
using an unpublished instrument that was developed by researchers at the
College of Nursing, Michigan State University. The instrument was
developed for use in a study entitled, “Impact of Alzheimer’s Disease on
F armly Caregivers,” that was funded by grants from the National Institute of
Mental Health, NIMH #1 R01 41766 and NIMH #2 R01 41766, awarded to

C. W. Givin, MD. and Clare Collins, PhD, RN, F.A.A.N., principal

32
investigators respectively. The purpose of the study was to examine how

caregiver responses, involvement in care, and need for and use of community-
based and institutional services changed with the progression of their
relative’s disease. In addition, caregiver reactions to institutionalization were
examined.

Items for the nursing home satisfaction instrument were generated from
ﬁve focus groups of farme members who cared for relatives with dementia,
some of whom had been placed in a nursing home (11 = 79). The purpose of
the groups, utilizing a qualitative approach, was to develop instruments to
measure aspects of community and institutional service use. Interactions
during the focus groups, the duration of which was two hours each, were
audio-recorded and transcribed. The transcription was reviewed to extract
potential items for measuring family caregiver satisfaction with nursing home
care. Researchers from the College of Nursing at Michigan State University
critically reviewed published literature relative to family caregiver satisfaction
with nursing home care, which is sparse, to assure validity of items generated
from the focus groups. Items that were proposed to measure family caregiver
satisfaction with nursing home care were formatted and pilot tested before
inclusion in an instrument that could be used to measure family caregiver

satisfaction with nursing home care.

33
Initially, eighteen items relevant to farmly caregiver satisfaction with

nursing home care were generated from the focus groups. Exploratory factor
analysis, using an oblique rotation, identiﬁed four factors. Items that loaded
on one factor at a level of greater than .50 and loaded on other factors at less
than .30 were retained. Seven items were eliminated and two subscales were
identiﬁed. No conﬁrmatory factor analysis was performed. Experts on
family caregiving from the College of Nursing at Michigan State University
reviewed the items on the ﬁnal subscales for face validity. One item,
measuring nursing home cost, was eliminated based on lack of similarity with
other items on that subscale. Items that composed these two subscales of
nursing home satisfaction resemble Bower’s (1988) preservative care and
technical care and are listed in Appendix C.

Subscales of family caregiver satisfaction with nursing home care,
preservative and technical care, contain seven and four items respectively.
Responses to the family caregiver satisfaction with nursing home care
subscales are coded on a 4-point Likert type questionnaire with responses
ranging from (1) very dissatisﬁed to (4) very satisﬁed; all positively coded. A
high score on either subscale represents a high level of satisfaction.
Cronbach’s alpha for preservative and technical subscales of family

caregiver satisfaction with nursing home care were .90 and .86 respectively,

34
and mean inter-item correlation’s are .62 and .61 respectively, which

demonstrates a high level of reliability. The interscale correlation for the two
subscales is .59, providing some support that these scales may represent two

dimensions of farmly caregiver satisfaction with nursing home care.

CHAPTER V

RESULTS

Description of the sample

Sociodemographic characteristics of family caregivers and their
institutionalized relatives are listed in Table 1. This was a small (N = 97),
homogenous, convenience sample, consisting predominantly of white, well
educated caregivers. The majority of the caregivers in the sample was female
(60%), but many in the sample were male (40%). Spouse caregivers were in
the majority (62%). Nonspouse family caregivers included children (26%)
and children-in-law (12%). The sample was variable relative to the age of the
caregiver (30-88 years) and the age of the institutionalized adult (58-92
years). Most of the caregivers were married (90%) which is not surprising
given the majority of spouse caregivers. Institutionalized relatives of family
caregivers in the sample had resided in the nursing home for an average of 12

months, ranging from 1 to 24 months.

35

36

Table 1. Sociodemographic Characteristics of
Family Caregivers and Institutionalized Adults with Dementia

 

Caregivers
(E= 97)

Gender

Male 27

Female 70
Family Relationship of Caregiver to Patient

Spouse 60

Child 25

Child-in-Law 12
Marital Status

Single 3

Married 87

Widowed 4

Divorced 3
Age (one caregiver and one care recipient missing)

Mean 64

Standard Deviation 7.1

Range 30-88
Race

White 95

Black 2
Education (one care recipient missing)

Grade School 5

Some High School 6

High School 29

Some College 30

College Graduate l4

Professional/Grad School 13
Number of Months in Institution (one care recipient missing)

Mean

Standard Deviation

Range

Institutionalized
Adults (E = 97)

39
58

75
6.5
58-92

l4
17
27
15
18

12
6.2
1-24

 

37
Interscale Correlation’s and Item Means

The interscale correlation between Caregiver Esteem and Impact on
Schedule was .07 which is lower than that reported in the literature and
clearly suggests that these subscales are measuring two distinct dimensions of
caregiver reactions. The interscale correlation between Satisfaction with
Preservative Nursing Home Care and Satisfaction with Technical Nursing
Home Care was .59 which is consistent with the correlation when the scales
were developed and supports the notion that these subscales may represent
two distinct dimensions of family caregiver satisfaction with nursing home
care.

Mean scores and standard deviations on subscales of caregiver
reactions and satisfaction with nursing home care among family caregivers of
institutionalized adults with dementia are listed in Table 2. Caregiver
reactions were measured on a 5-point Likert scale with responses ranging
from strongly agree to strongly disagree. A lower score on the Caregiver
Esteem subscale or a higher score on the Impact on Schedule subscale
represented greater caregiver burden. The two dimensions of farmly
caregiver satisfaction with nursing home care was measured on a 4-point
Likert scale with responses ranging from very dissatisﬁed to very satisﬁed. A

higher score on either satisfaction subscale, Preservative or Technical,

38
represented greater family caregiver satisfaction with nursing home care of a

demented relative. Mean burden scores [Caregiver Esteem (M =3.59, S_D =
.61); Impact on Schedule (M = 3.00, SD = .76)] were moderately high, with
limited variability around the mean. Mean satisfactiOn scores [Satisfaction
with Preservative Care (_M = 3.40, S_D = .61) and Satisfaction with Technical
Care 03/1 = 3.50, S_D = .58)] in this study were high, also with limited

variability around the mean.

Table 2. Mean Scores on Subscales of Caregiver Reactions and Satisfaction with Nursing Home
Care among Family Caregivers of Institutionalized Adults with Dementia

 

 

Mean Standard Deviation
(Range)

Caregiver Reactions

Caregiver Esteem (N = 94) 3.59 .61 (2.00-5.00)

Impact on Schedule (11 = 94) 3.00 .76 (1.00-4.80)
Satisfaction with Nursing Home Care

Satisfaction With Preservative Care (N = 94) 3.40 .61 (1.29-4.00)

Satisfaction With Technical Care a = 93) 3.50 .58 (1.00-4.00)

 

NOTE:
Possible scores for caregiver reactions range from (1), strongly disagree to (5), strongly agree.
Possible scores for nursing home satisfaction range from (1), very dissatisﬁed to (4), very satisfied

Results of Hypothesis Testing
Correlation’s between subscales of caregiver reactions and satisfaction

with nursing home care among family caregivers of institutionalized adults

39
with dementia are listed in Table 3. It was hypothesized that family caregiver

satisfaction with preservative nursing home care would be positively
correlated with caregiver esteem. This hypothesis was supported (r = .23;
two tailed p = .03; df 93). It was hypothesized that family caregiver
satisfaction with preservative nursing home care would be negatively
correlated with caregiver impact on schedule. Although the correlation was
in the predicted direction, it failed to reach statistical signiﬁcance and did not

support the hypothesis (r = -. 13, two tailed p = .20, (If 93).

Table 3. Correlation’s Between Subscales of Caregiver Reactions and Satisfaction withNursing
Home Care among Family Caregivers of Institutionalized Adults with Dementia

 

 

Caregiver Esteem Impact on Schedule
(E = 94) (.1! = 94)
Satisfaction with Preservative Care .23" j -.13
Satisfaction with Technical Care .10 -.25*

 

*p < .05, 2-tailed

It was hypothesized that family caregiver satisfaction with technical
nursing home care would be positively correlated with caregiver esteem. This
hypothesis was not supported (r = .10, two tailed p = .32, df 93). It was

hypothesized that family caregiver satisfaction with technical nursing home

4O
care would be negatively correlated with caregiver impact on schedule. This

hypothesis was supported (r = -.25; two tailed p =02; (If 93).

The literature often reports family caregiving among various caregiver
groups, such as spouses, adult children, or daughters (Brackley, 1992; Brody,
1985; Corcoran, 1993; Green, 1991; King et al., 1993; Matthiesen, 1989;
Pruchno et al., 1990; Ross et al., 1993; Smith & Bengston, 1979; Temple &
F awdry, 1992). Therefore, additional analyses for this study included
separating the sample by spouse (N = 57) and nonspouse (N = 36) caregivers
and examining the hypotheses for each subgroup. The results of these

analyses are presented in Table 4.

Table 4. Correlation’s between Subscales of Caregiver Reactions and Satisfaction with Nursing
Home Care Among Spouse and Nonspouse Caregivers of Institutionalized Adults with Dementia

 

 

Caregiver Esteem Impact on Schedule
Spouse Nonspouse Spouse Nonspouse
QI_=57) m=36) (3:57) (2:36)
Satisfaction with Preservative Care .38“ -.01 -.16 -.25
Satisfaction with Technical Care .24 -.12 -.28* -.33*

 

*p < .05, 2-tailed
"p < .01, 2-tailed

Among spouse caregivers, caregiver esteem was signiﬁcantly
correlated with satisfaction with preservative nursing home care (r = .38, two

tailed p = .003; df 57) but not signiﬁcantly correlated with satisfaction with

41
technical nursing home care (r = .24; two tailed p = .07; df 56). Impact on

schedule was negatively correlated with satisfaction with technical nursing
home care among both spouse (r = -.28; two tailed p = .03; df 56) and
nonspouse caregivers (r = -.33; two tailed p = .049; df 35). Impact on
schedule was negatively, but not signiﬁcantly, correlated with satisfactory
preservative nursing home care among both spouse (r = -. 16; two tailed p =
.22; df 57) and nonspouse caregivers (r = -.25; two tailed p = .13; df35).

Generally, when comparing subgroups of family caregivers, spouse and
nonspouse, the magnitude of the correlations increased among spouse
caregivers, especially the relationship between caregiver esteem and
satisfaction with preservative nursing home care. When separating the
sample into subgroups for analysis, the correlation between satisfaction with
preservative care and caregiver esteem became insigniﬁcant among
nonspouse caregivers. The magnitude Of the correlation between impact on
schedule and satisfaction with technical care increased among spouse and
nonspouse caregivers compared to caregivers in general.
Discussion

The sample in this study was small, nonrandom, and homogenous,
consisting of predominantly white, well educated family caregivers, and may

not be representative of the general population of farmly caregivers of nursing

42
home residents with dementia. Many in the sample were spouse caregivers,

which may not represent the general population of family caregivers of
institutionalized adults with dementia. It may be that a large number of
spouses was represented in this sample due to greater emotional attachment
to the care recipient and greater perceived caregiver responsibility among
spouses, versus other caregiver subgroups. Subsequently, spouses may have
been more interested in participating in a study that might validate their
caregiving experience and be helpful to other family caregivers in the future.
Furthermore, spouses, who may be relieved of child rearing responsibilities
and retired from active employment, may have more time to participate in a
caregiver study.

Nonspouse caregivers, including children and children-in-law who, the
literature suggests, represent a large number of family caregivers in the
nursing home setting, were a minority in this sample. Adult children with
careers and families may have declined to participate in this study due to
conﬂicting demands on their time. Therefore, the results of this sample
cannot be used to make inferences about the general population of family
caregivers, particularly adult children, of nursing home residents with

dementia.

43
In addition to homogeneity in terms of familial relationship, marital

status, race, and education, the sample was also homogenous in response to
the study variables, resulting in lack of variability around the mean. Lack of
variability in responses may explain the relatively low correlations observed
in this study. More variability in response to subscales of caregiver burden or
satisfaction with nursing home care may have increased the strength of the
correlations between subscales.

In this study, care recipients had been institutionalized from one to
twenty-four months (M = 12; SD = 6.2). The number of family caregivers in
the sample whose relative with dementia had resided at the nursing home for
a relatively short time, such as less than one or two months, is unknown.
Initial days, weeks, and months following nursing home placement of a family
member with dementia may be considerably stressful for the family caregiver.
During this initial phase, family members are becoming acclimated to the
nursing home setting, and family dynamics are interfacing with institutional
dynamics. It may be that caregiver burden and/or satisfaction with nursing
home care during the ﬁrst month following institutionalization are different
from the general experiences of family caregivers. Measures of family
caregiver satisfaction and family caregiver burden during the initial phase

following nursing home placement of a relative with dementia may skew the

44
data and fail to represent the general reactions of family caregivers of nursing

home residents with dementia.

The care needs of the nursing home residents in this sample are also
unknown. The needs of nursing home residents with dementia may vary
considerably. Some may need minimal supervision; some may need partial
assistance with ADL’S, others may be uncooperative or combative; others
may need complete care for ADL performance. Some nursing home residents
with dementia may be “pleasantly confused;” others may be moody and
angry; others may be in a vegetative state. The variable nature of mental and
physical problems associated with dementia may effect measures of caregiver
burden and satisfaction with nursing home care among family caregivers of
institutionalized adults.

This study was limited to the design of the larger study in which there
were few controls and no manipulation of variables; therefore, causation
cannot be inferred. The data were self-reported and dependent upon the
subjective experience of family caregivers. Nevertheless, limitations in the
design of the larger study are understandable given the nature of the variables
and ethical considerations that limit the application of control measures in

scientiﬁc investigation of family caregiving.

45
Additional limitations of the current study include the fact that

measurement instruments of caregiver burden and satisfaction with nursing
home care have questionable validity. Although the CRA is recommended
for use in varied circumstances of family caregiving, the CRA has not
previously been used in the nursing home setting. The two subscales
measuring family caregiver satisfaction with nursing home care may not
reﬂect Bower’s description of preservative and technical care. For example,
some items on the preservative subscale, such as “Number of staff available
to your relative,” or “Skill and ability of staff caring for your relative” seem to
be somewhat technical in nature. Furthermore, items on the technical
subscale, such as “How frequently your relative is seen by a doctor,” seem to
focus on medical care and does not include many other aspects of technical
care such as nursing care to prevent pressure ulcers.

The mean interscale correlation between the two subscales for
measuring farmly caregiver satisfaction with nursing home care (.59) does not
provide strong evidence that these subscales represent two distinct
dimensions of satisfaction. The measurement instrument for family caregiver
satisfaction with nursing home care has not undergone conﬁrmatory analysis.
Thus there are several concerns about the measurement instruments in this

study, both conceptually and operationally. Nevertheless, limitations relative

46
to measurement instruments are understandable given that additional

measures of burden or satisfaction in the nursing home setting are not
available.

Existing literature relative to family caregiving in the nursing home
setting is sparse. King, et a1. (1991) compared family caregiver reactions pre-
and post-institutionalization and found that family caregivers of frail elders
(not elders with dementia) experience impact on schedule (M = 3.4; SD =
.94; df 35) following institutionalization. This ﬁnding supports the results of
the current study relative to impact on schedule of family caregivers of
nursing home residents. This researcher found no references in the literature
relating caregiver esteem or impact on schedule with nursing home
satisfaction among family caregivers of demented nursing home residents.

The results of this study may mean that satisfaction with preservative
nursing home care among farmly caregivers of demented nursing home
residents is related to increased caregiver esteem, which was the hypothesis
of the study. Nevertheless, it is entirely possible that family caregivers who
have low caregiver esteem also have low self-esteem in general. Caregivers
with generally low self-esteem may be dissatisﬁed with many things in life,
including the nursing home care of their family member. Thus, it may be that

low self esteem is associated with general dissatisfaction in life, which limits

47
the implications of the current study. Furthermore, many other variables,

such as self efﬁcacy, hardiness, or access to the healthcare system, are likely
to affect both nursing home satisfaction and caregiver esteem.

Caregiver esteem may be unrelated to satisfaction with technical care
because the family caregiver expects the nursing home staff to be responsible
for technical care, whereas the family caregiver retains a sense of
responsibility for preservative care. When caregiver esteem is correlated with
satisfactory preservative care and separated by spouse and nonspouse
caregivers, the relationship became insigniﬁcant among nonspouse caregivers
and increased in signiﬁcance among spouse caregivers. It is likely that the
intimacy of the spousal relationship, compared to the nonspouse, may have
led the spouse caregivers to feel more responsible for preservative care than
technical care.

Furthermore, it is possible that the spouse, probably of an older
generation than the nonspouse, may continue to hold a paternalistic view of
the healthcare system. This paternalistic view, which was common in an
earlier era of healthcare and continues to inﬂuence today’s healthcare
consumers, expected the healthcare consumer to accept healthcare services
unquestioningly, not to evaluate the adequacy or appropriateness of

healthcare practices and not to actively participate in healthcare decisions.

48
Thus, it may be that caregivers in this study lacked a vision for satisfactory

technical nursing home care.

A competing explanation for caregiver esteem having been signiﬁcantly
correlated with family caregiver satisfaction with preservative care but not
related to satisfaction with technical care is the possibility that nursing homes
in this study were consistently providing a high level of technical care; thus
technical care was a “non-issue,” leaving family caregivers to focus on
preservative care. This explanation lacks support from the literature which
suggests that many family caregivers are not satisﬁed with nursing home care
(Collins, et al., 1994) and preservative care is an important element of
technical care (Bowers, 1988).

The results of this study suggest that satisfaction with technical aspects
of nursing home care among family caregivers of demented nursing home
residents is related to lower levels of impact on schedule among both spouse
and nonspouse caregivers. Family caregivers who were not satisﬁed with
technical aspects of nursing home care may fear for the safety and physical
well-being of their relative. These caregivers may visit the nursing home
more frequently and stay longer to oversee and supplement the hands-on care
expected from nursing home caregivers. Time spent traveling to the nursing

home and assisting with the physical care of a demented relative is likely to

49
take away from the family caregiver’s personal activities and impact on their

schedule. A competing explanation is that caregivers who generally have

difﬁculty managing their time may experience greater perceived impact on
schedule and be dissatisﬁed with various aspects of life, including nursing
home care of their relative with dementia.

Lack of a signiﬁcant relationship between impact on schedule and
family caregiver satisfaction with preservative care may be explained by the
fact that preservative care probably can be provided on a more ﬂexible time
schedule over a longer period of time, whereas technical care must be
performed regularly throughout the day on a more rigid schedule. For
example, looking at a family photograph album (preservative care) may be
therapeutic at any time of the day, once or twice a week, but bathing,
positioning, and feeding (technical care) probably needs to be provided every
2-4 hours throughout the day and night. A farme caregiver who attempts to
compensate for perceived unsatisfactory technical nursing home care by
overseeing or personally supplementing care may ﬁnd that the rigid time
demands of technical care has a signiﬁcant impact on schedule.

In summary, satisfaction with preservative nursing home care is
signiﬁcantly related in a positive direction to caregiver esteem among spouse

caregivers of nursing home residents with dementia. Satisfaction with

5 0
preservative nursing home care is unrelated to caregiver esteem among

nonspouse caregivers of nursing home residents with dementia. Satisfaction
with preservative nursing home care is unrelated to impact on schedule
among both spouse and nonspouse caregivers of nursing home residents with
dementia. Satisfaction with technical nursing home care is unrelated to
caregiver esteem among both spouse and nonspouse caregivers of nursing
home residents with dementia. Satisfaction with technical nursing home care
is signiﬁcantly related in a negative direction to impact on schedule among
both spouse and nonspouse caregivers of nursing home residents with
dementia.
Implications for Practice

Due to limitations in the sample and design of this study, implications
for practice must be considered cautiously. Inferences cannot be made
relative to causation between family caregiver burden among family
caregivers of nursing home residents and satisfaction with nursing home care.
Signiﬁcant investment of healthcare dollars or changes in nursing home
policies and procedures are not reasonable based on this study. Nevertheless,
according to the framework of Stetler & Marrarn (1976) this study may be
used to enhance the understanding of family caregiving in a nursing home

setting, and the nurse may consider the ﬁndings for possible future use. For

51
example, a nurse in the nursing home who observes evidence of caregiver

burden among family caregivers may want to consider an assessment of the
family caregiver’s satisfaction with nursing home care. Conversely, a nurse
in the nursing home who is dealing with a dissatisﬁed family caregiver may
want to assess the family caregiver’s perception of burden.

Based on the results of this study, which reports that a large portion of
the sample was satisﬁed with nursing home care, primary care providers need
not refrain from recommending nursing home placement of a demented
relative to a burdened family caregiver. Nevertheless, the primary care
provider may caution the family that caregiver burden may persist following
nursing home placement. Primary care providers may counsel family
caregivers to compare nursing homes for evidence of satisfactory care prior to
selecting a nursing home.

Based on these results, which suggest that family caregivers of nursing
home residents experience lack of caregiver esteem and impact on schedule,
nurses in a nursing home may be encouraged to view nursing home care from
a family centered perspective. A family centered approach to care suggests
that nurses may assess the family caregiver system, especially the Spouse
caregiver, identify problems, and create approaches to help family members

of nursing home residents.

52
Nursing home caregivers should abide by requests from families to

preserve the individuality and dignity of nursing home residents by decorating
the room with familiar objects, such as family photographs, and
accommodating past patterns, such as distinct food preferences, sleep
schedules, activity preferences, religious customs, etc. Nursing homes should
attempt to avoid rigid rules which can be baniers to preservative caregiving in
the nursing home. The family caregiver should be encouraged to participate
in decision making regarding the plans for care for their relative with
dementia.
Qggestions for Further Research

Further research is needed to develop valid and reliable tools for
studying farme caregiving in the nursing home. Representative samples of
family caregivers of nursing home residents are needed to make valid
inferences relative to family caregiving in the nursing home setting. Further
research with a larger, more heterogeneous sample is recommended.
Research comparing caregiver subgroups, particularly spouse caregivers
versus other family caregivers, is suggested considering the signiﬁcant
burdens impacting the spouse caregiver in the nursing home setting. Analysis
of speciﬁc subgroups of caregivers, such as male, female, employed, and

unemployed caregivers, may also be useful. Further research using samples

53
of family caregivers of nursing home residents with disease processes other

than dementia, such as heart disease, arthritis, or depression, may be useful to
provide ﬁuther insight relative to family caregiver burden and satisfaction
with nursing home care. It may be that family caregiver burden among family
caregivers of nursing home residents in general, not just among family
caregivers of nursing home residents with dementia, is related to satisfaction
with nursing home care.

Longitudinal studies examining burden before nursing home placement
and level of satisfaction following placement may be useful to control for
variations in burden. Researchers may want to study family caregivers during
the ﬁrst month following nursing home placement to capture unique variables
during the initial phase of nursing home adjustment. Other researchers may
want to eliminate family caregivers from the initial phase following nursing
home placement of a relative when making inferences about family caregivers
of nursing home residents in general. Further research is recommended which
focuses on family caregivers of nursing home residents who show evidence of
low caregiver burden and high satisfaction with nursing home care to identify
relevant variables and elicit possible intervention strategies for family

caregivers experiencing burden in the nursing home setting.

54
Family caregiver satisfaction with nursing home care may be studied as

an outcome criteria to assess the quality of nursing home care for nursing
home residents with dementia. Assessment of family caregiver satisfaction
with nursing home care may be a cost-effective way to assess nursing home
quality, supplementing government oversight.
Evaluation of Theoretical Framework

Neuman’s Systems Model was appropriate for this study considering
the lack of speciﬁc ﬁameworks for family caregiving in the nursing home.
Although the Neuman Model is broad, it provided some guidance for
understanding relationships among the variables in this study. Signiﬁcant
results relating caregiver esteem with satisfactory preservative care and
relating impact on schedule with satisfactory technical care support Neuman’s
concepts of stressors and their relationship to system stability. Mixed results
from this study are understandable in view of the framework upon which this
study is based which assumes that complex elements within the family
caregiver system and the environment are interacting. Thus, in addition to
lack of caregiver esteem or impact on schedule, many variables, known and
unknown, may be consmning energy and threatening system stability in the

family caregiver system of the demented nursing home resident.

55
Theories of family caregiving that describe, explain, and predict

experiences of the family caregiver and generate possible intervention
strategies for family caregiver burden need to be developed. Family
caregiving theory needs to be developed to a level that includes family
caregiving for relatives with dementia among various groups of caregivers in
various environments, including the nursing home.
Conclusion

Aging in our society is characterized by undesirable transitions, such as
changing physical appearance, decreasing physical stamina, onset of chronic
health problems, declining economic resources, or death of family members
and ﬁiends. An aging person with dementia may lose essential qualities that
deﬁne a person as part of the larger human family, such as less of the ability
care for oneself or to communicate with loved ones. Family caregivers of
aging adults with dementia provide a valuable service to society in that they
provide much of the care for their relatives, even after nursing home
placement. Unfortunately, family caregivers experience signiﬁcant burden
associated with caregiving, and their burden persists after nursing home
placement.

A negative stereotype is associated with nursing homes in our society.

Nursing homes have roots in nineteenth century poorhouses and early

56
twentieth century state mental hospitals which may explain some of the social

stigma attached to nursing homes. Unfortunately, present-day nursing homes
have been modeled after acute-care hospitals with the focus on curing illness.
Thus, nursing homes are limited in their ability to create a therapeutic milieu
designed to meet the complex psychosocial needs of residents with dementia
(Collopy, Boyle, & Jennings, 1991). Generally, nursing homes house elderly
women in a society that undervalues both women and the elderly, which may
explain some of the negative feelings towards nursing homes. Media hype
associated with reporting nursing home outcomes in terms of the “worst-case
scenario” serves to perpetuate the negative stereotype of nursing homes. The
stigma associated with nursing homes is reinforced by the myth that family
caregivers abandon demented relatives following nursing home placement.
Perpetuating negative views of nursing homes may be a defensive
coping strategy which protects society from acknowledging that a person may
lose basic human qualities as the result of illness. Society may prefer to deny
the potentially morbid implications of a dementing illness, thus blaming
nursing homes and/or family caregivers for the consequences of dementia.
Unfortunately, society’s negative view of nursing homes adds to the already
signiﬁcant burden of family caregivers of relatives with dementia who need

nursing home care.

57
Substandard, negligent, and abusive treatment may occur in nursing

homes, but nursing homes are not totally to blame. Health care personnel,
including nursing home workers, generally have a desire to do good. Caring
for demented nursing home residents is a formidable task, and society has not
provided nursing homes with the necessary tools to provide quality nursing
home care for residents with dementia. A uniﬁed paradigm for nursing homes
that guides effective care for residents with dementia is not supported by a
research-based body of knowledge. Thus, family caregivers of nursing home
residents, nursing home professionals, and government regulators may have
disparate deﬁnitions of nursing home care without a ﬁrm vision for quality in
nursing homes.

Barring the unlikely possibility that nursing homes will become
unnecessary and obsolete in the future, politicians and regulatory agencies
must work with family caregivers, nursing home professionals, and
researchers to formulate an integrated and consistent view for the role of
nursing homes in our society. Political rhetoric will not improve the
conditions in nursing homes, and govemment over-regulation may be a barrier
to quality nursing home care. Achieving a common view of the “good”
nursing home is a challenging goal that cannot be achieved without further

research. Family caregiver satisfaction with nursing home care may be a

5 8
valid and cost effective measure of quality nursing home care for residents

with dementia.

APPENDICES

APPENDIX A

Letter of Approval from Michigan State University’s

Committee for Research Involving Human Subjects

n]-

“7‘

 

- OHMIOF
RESEARCH
AND
CRADUATE
STUDIES

hivesiry Committee on
Researchlnvohdng
Human Sublects
(UCRIHS)

Michigan State University
32 Mministration Building
East Lansing, Michigan
«ma4ou

517/355-2180
FAX: 517/432-1171

The Machogan Sure University
{0&1 rs Inslllulloml Diversify.
[ ice/late m Action

USU IS 3n stimulus-that.
calm .rmorrumry IUSII’UIJOH

h4|<3iilC3l\P4 Siiﬂfrfi

 

lJ P4 1 \l E ii S l 1' Y

May 24, 1995

To: Clare Collins
A-129 Life Sciences

RE: IRBI:

95-273

TITLE: SATISFACTION WITH NURSING HOME CARE RELATED TO

CAREGIVER BURDEN AMONG FAMILY CAREGIVERS OF
INSTITUTIONALIZED ADULTS WITH DEMENTIA

Revrsrou REQUESTED: N/A
carscoar: l-E
APPROVAL oars: 05/24/95

The University Committee on Research Involving Human Sub

ects'(UCRIHS)

review of this project is complete. I am pleased to advise that the
rights and welfare of the human subjects appear to be adequately
protected and methods to obtain informed consent are appropriate.

herefore,
above.

RENEWAL:

REVISIONS:

PROBLEMS]
caancss:

If we can be of any future help
at (517)355-2180 or FAX (517)4aé-

Sincerely,

   

avid E. Wright
UCRIHS Chair

the UCRIHS approved this project and any revrsion listed

UCRIHS approval is valid for one calendar year, beginning with
the approval date shown above. Investigators planning to
continue a project be and one year must use the green renewal
form (enclosed with t e original approval letter or when a
project is renewed) to seek u ate certification. There is a
maximum of four such expedite renewals ssible. Investigators
wishing to continue a project beyond the time need to submit it
again or complete revrew.

UCRIHS must review any changes in rocedures involving human
subjects, rior to in tiation of t e change. If this is done at
the time o renewal, please use the green renewal form. To
revise an ap roved protocol at any 0 her time during the year
send your wr tten request to the CRIHS Chair, requesting revised
approval and referencing the project's 188 I and title. Include
in our request a descr ption of the change and any revised

ins ruments, consent forms or advertisements that are applicable.

Should either of the followin arise during the course of the
work, investigators must noti y UCRIHS promptly: 11) roblems
(unexpected side effects comp aints, e c.) involv ng uman
subjects or 23 changes in the research environment or new
information n icating greater risk to the human sub ects than
existed when the protocol was previously reviewed an approved.

lease do not hesitate to contact us
€171.

   

DEW:kaa/lcp

S9

APPENDIX B

Subscale Items for Two Dimensions of Family Caregiver Burden:

Caregiver Esteem and Impact on Schedule“

Caregiver Esteem

 

l. I feel privileged to care for

2. I really want to care for

3. I enjoy caring for

4. Caring for makes me feel good.

5. Caring for is important to me.

6. I will never be able to do enough to repay

7. I resent having to care for (reverse scored)
Impact on Schedule

1. My activities are centered around care for

2. I have stopped in the middle of my work or activities to provide

3.
4.

5.

care.
I have eliminated things from my schedule Since caring for

The constant interruptions make it difﬁcult to ﬁnd time to care
for .

I visit family and ﬁiends less since I have been caring for

 

*Possible responses range from, (1) strongly disagree to, (5) strongly agree.
A lower score on the caregiver esteem subscale and a higher score on the
impact on schedule subscale represents greater burden. All items, except
one, are positively scored.

60

APPENDIX C

Subscale Items for Two Dimensions of
Family Caregiver Satisfaction With Nursing Home Care“

Preservative Care

Quality of food your relative receives.

Number of staff available to your relative.

Skill and ability of staff caring for your relative.
Attitudes of persons caring for your relative

Degree of respect and dignity shown to your relative
Ability of staff to care for someone with Alzheimer’s.
Staff willingness to listen and act on your concerns

.\K°‘!~":"‘f*’.~f"

Technical Care

1. Measures taken by staff to provide safety for your relative.
2. Medical care provided for your relative.

3. How frequently your relative is seen by a doctor.

4. Medications given to your relative for treatment of illness.

*Possible responses range from, (1) very dissatisﬁed to, (4) very satisﬁed. A
higher score represents greater satisfaction. All items are positively scored.

61

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