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This is to certify that the

thesis entitled

SPOUSAL CAREGIVING INVOLVEMENT IN THE NURSING HOME
presented by

‘Frances L. Markley

has been accepted tovliards fulfillment
of the requirements for

Masters degree in Nursing

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MSU In An Atllrmotlvo Action/Equal Opponunlty Institution
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SPOUSAL CAREGIVING INVOLVEMENT IN THE NURSING HOME

BY

Frances L. Markley

A THESIS
Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of

MASTER OF SCIENCE IN NURSING

College of Nursing

1995

ABSTRACT

SPOUSAL CAREGIVING INVOLVEMENT IN THE NURSING HOME

BY

Frances L. Markley

A non—experimental ex post facto descriptive study of
53 spouse caregivers who had institutionalized a spouse with
Alzheimer’s disease or a related dementia was performed to
look at visiting patterns and involvement with care within
the institution.

Data were taken from an original study "The Impact of
Alzheimer's Disease on Family Caregivers", funded by the
National Institute of Mental Health, #NIMH 2R0141766, by
Clare Collins, R.N., Ph.D., F.A.A.N., Principal
Investigator. Data were analyzed using frequency and
central tendency.

Spouse caregiver visiting and involvement of eight
Activities of Daily Living were examined: eating, dressing,
grooming, bathing, toileting, walking, getting in and out of
bed and moving in bed. Spouse caregiver involvement was
highest for eating, grooming and walking. They visited an
average of 26 days a month with a mean time of 108 minutes.
Results indicate spouse caregivers continue to care for

their husbands or wives after placement in an institution.

ACKNOWLEDGEMENTS

My appreciation is expressed to the members of my
committee whose assistance was invaluable in completing this
thesis. To Carla Barnes, Ph.D. for accepting the
responsibilities of committee chairperson which involved
guidance and extraordinary scholarly efforts to finalize
this work. To committee members, Sharon King, Ph.D. and
Brigid Warren, M.S.N., for their support and encouragement.

To Clare Collins,Ph.D. for the use of her data set.

iii

TABLE OF CONTENTS

CHAPTER 1 INTRODUCTION

CHAPTER 2

CHAPTER 3

CHAPTER 4

Problem background
Caregiving .

Shared caregiving after
institutionalization
Statement of the problem
Purpose .

Definition of concepts

Research questions
Limitations
Assumptions
Conceptual framework

LITERATURE REVIEW

Caregiving involvement after
institutionalization

Frequency of visits

Summary

METHODOLOGY AND PROCEDURE

Original research

Design .

Research questions

Operational definitions

Sample

Sociodemographic data .
Visitation and ADL involvement
Reliability

Protection of human rights
Analysis of the data

RESULTS AND DISCUSSION

Sample and background material
Research question 1

Research question 2

Research question 3

Discussion

Summary

iv

#FJH

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13
13
l4
14
15

l9

19
25
27

29
29
30
31
31
32
32
32
33
33
34

35
35
36
37
37
41
49

CHAPTER 5 SUMMARY AND CONCLUSIONS

Overview

Limitations . . . . . . . . . .

Implications for advanced nursing
practice . . . . . . . . . . . . .

Implications for existing literature

Recommendations for further research

Summary

APPENDIX A Modified Version of the Cornwell
Involvement Invenstory

APPENDIX B UCRIHS Approval Letter

LIST OF REFERENCES

51
51
51

53
56
57
59
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63

64

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Table

Table

Table

Table

Table

Table

Table

LIST OF TABLES

Selected Demographic Caregiver
Characteristics

Monthly Visits of Spouse
Caregivers to Nursing Home

Length of Spouse Caregiver
Visits to Nursing Home

Percentage of Spouse Caregivers
Involved in ADLs

Spouse Caregivers Providing
Help with ADLs When Needed

Number of ADLs and Number of

Spouse Caregivers Providing Assistance.

ADL Involvement by Spouse Caregivers

vi

35

36

37

38

39

4O

42

LIST OF FIGURES

Figure l Spouse Caregiving Role in
the Nursing Home . . . . . . . . . . . . . . . 18

Figure 2 Spouse Caregiving Involvement in the
Nursing Home/Long Term Care Facility . . . . . 50

Vii

CHAPTER 1

INTRODUCTION

Problem background

The growth of the elderly population of the United
States is now greater than at any other time in history. At
the present time there are 11.3% Americans over age 65 and
it is projected that both the number and the proportion of
the elderly population will continue to grow (Greene,
Monahan & Coleman, 1992). It is forecasted that 4.6 million
Americans will be over age 85 by the year 2000, an increase
of 30% since 1950 (U.S. Department of Public Health and
Human Services, 1991). The distribution of the population is
shifting toward the older end of the age distribution scale.

Two age classifications of the elderly are posited by
Neugarten (1974): ages 55 to 74 as "young old", age 75 and
older as Fold-old". A third posited by Green et al.(l992)
is 85 years and older as "oldest-old".

Corresponding to the increase in the elderly population
is an increase in the number of elderly people with
disabilities. Bowers (1987) describes 6.3% of the U.S.
population under 70 as extremely impaired, with the

percentage increasing to 22% for those over 85 years of age.

2
Projections indicate that increasing numbers of couples will
be categorized as elderly and suffering chronic health
problems (Deimling & Poulshock, 1985). A study of older
adults in the community found one third of the elderly rated
their health as fair or poor (Adams & Collins, 1987).

The increasing percentage of the population in the
United States classified as elderly implies a greater demand
for geriatric primary care services. Studies about the
activities and abilities of the elderly are meaningful to
healthcare providers because knowledge about their
characteristics is essential for the provision of health
maintenance and promotion services for elderly clients by
Advanced Practice Nurses (APNs). Research in geriatric
healthcare is relatively new. Researchers have historically
utilized younger populations for healthcare studies.
Consequently there are few healthcare protocols for the
older population supported by research studies of older
people. Surveys show there is lack of geriatric scientific
knowledge to adequately educate healthcare professionals
serving the elderly population. There is a need for more
scientific data about the elderly population in order to
increase the foundation of current geriatric knowledge
(Green, et al., 1992).

This study will generate knowledge about activities and
abilities of one segment of the geriatric population, the
elderly spouse caregiver. Elderly spouse caregivers may

present to primary care providers with health problems

3
related to caregiving. The potential for health problems
increases as the spouse caregiver increases assistance with
activities of daily living (ADLs) (Barnes, Given & Given,
1992). It is not unusual for spouse caregivers to experience
a deterioration in their own health. This can occur while
the spouse is caring for their husband or wife at home or in
a long term care facility. When spouse caregiver presents to
primary care for help, the APN will be able to utilize
research knowledge about elderly spouse caregivers.

The transition from home care to institutional care is
a momentous event for an elderly couple. Spouse caregivers
of institutionalized persons may experience stress and
negative emotions surrounding nursing home placement
(Riddick, 1987). A study by Townsend, Heiselman and Deimling
(1989) indicate some levels of stress may be chronic for the
spouse caregiver and may persist for years after admission.
In primary care the APN must be able to recognize negative
psychological and social impact upon spouse caregivers of
institutionalized residents.

Knowledge about spouse caregiving activities in the
nursing home as well as the visiting frequency and duration
may be useful for supporting the spouse caregiver in
identifying effective coping strategies related to
institutionalization (Pratt, Schmall, Wright & Cleland,

1985).

Caregivinq

Historically caregiving is a family task with family
members providing most of the care for the elderly
(Montgomery, 1985). Caregiving begins in the family as a
family member experiences a transition from an independent
lifestyle to that of dependency. The principal family
caregiver usually is the spouse, followed by adult daughters
and then daughters-in—law (Brody, 1981). A study by Stone,
Cafferata and Sangl (1987) found 65% of community elderly,
with one or more limitations in activities of daily living
(ADLs), were cared for by husbands, wives or adult
daughters.

Dependency in one or more ADLS usually requires the
assistance of a caregiver. ADLs are those activities which
are regarded as essential for an independent lifestyle. ADLS
address basic physical care needs such as bathing, dressing,
toileting, mobility, and eating. Caregiver assistance with
ADLS may range from minimal assistance to complete
performance of an activity. For example, with bathing,
assistance may range from minimal assistance such as washing
the spouse’s back to total assistance, washing the entire
body. Assistance with dressing may range from getting
clothes out of closets and drawers to dressing the spouse
completely. Toileting assistance may range from helping
reach the toilet to cleaning the spouse after elimination.
Mobility caregiving assistance may range from providing

support with an arm to extensive lifting the spouse, while

5
eating assistance may range from placing the food on the
table to actually putting food in the spouse’s mouth. (Katz,
Downs, Cash & Grotz, 1970)

The onset of caregiving usually begins with providing
help with Instrumental Activities of Daily Living (IADLs).
These supportive activities do not involve direct physical
care, but they include housekeeping, food preparation, use
of the telephone, doing laundry, dispensing medicine,
transportation, handling finances, shopping and performing
home maintenance duties. Caregiving involving IADLs may
range from minimal to maximal assistance. For example
caregiver assistance with housekeeping may range from
minimal assistance with heavy chores to total assistance
with all housekeeping chores. IADL dependency typically
begins with a spouse experiencing some difficulty with the
activity and progressing to complete inability to perform
any aspect of the IADL, resulting in the caregiver assuming
full responsibility for the activity (Chenitz, Stone &
Salisbury, 1991).

In addition to providing physical care, caregiving
involves providing for psychological needs, which includes
promoting and maintaining emotional and spiritual well—being
(Perlin, Mullan, Semple & Skaff, 1990). Illness in the
older population makes them more at risk for mental and
social deficits than the younger population (Hogstel, 1990).

The family caregiver most often serves as the counselor and

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6
confidant for the impaired family member (Brody, Johnson &
Fulcomer, 1984).

The role of caregiving can involve physical, financial,
social, and interpersonal strains that may eventually exceed
the capabilities of the caregiver (Stull, Kosloski &
Kercher, 1994). Often the family caregiver performs the role
until the strains of the caring tasks become too difficult
to fulfill. There are two major conditions in the role that
tend to determine the continuation of caregiving in the
home: the caregiver’s health and the spouse’s level of
impairment (Edelson & Lyons, 1985). Progressive
deterioration of the spouse’s health and mental status
increase the need for more intense caregiving which may be
beyond the physical and mental capabilities of the family
caregiver (Johnson & Werner, 1987). Spouse caregivers are
usually forced to consider placement of their husbands or

wives in an institution.

Shared careqivinq after institutionalization

In the population above age 65 about 5% are
institutionalized and that number increases to 20% in the
population over age 85 (Hing, 1989). In nursing homes the
majority (70%) of the population suffers from either
depression or a cognitive disorder (Rovner & Rabins, 1985).
Dementia, a cognitive disorder, is characterized by
impairment in memory and reasoning ability. Alzheimer’s

Disease is a non—reversible cognitive disorder with no known

7
treatment. It is characterized by change in the individual’s
emotional expression accompanied by persistent and
progressive loss of mental abilities, disrupting daily life.
Other behavioral symptoms include hallucinations, delusions,
wandering, sleep disruption, crying, inability to care
physically for self and inability to communicate (Cohen &
Eisdorfer, 1986). Alzheimer’s disease and depression are the
primary mental health problems found in nursing home
populations (Hogstel, 1990).

Spouses who provide care in the home may eventually be
pressured to institutionalize their husbands or wives.
Placement of a husband or wife is one of life’s most
difficult decisions (Dobrof & Litwak, 1977). Spouse
caregivers resort to institutional placement only after
exhausting all other possible alternatives for assistance
with care (Brody, 1977).

It is not unusual for spouse caregivers who
institutionalize their husband or wife to develop guilt
feelings after placement (Edelson & Lyons,1985), and many
family caregivers continue to provide care for their loved
one after institutional placement (York & Calsyn, 1977).
After placement, spouses frequently visit their husbands or
wives in the nursing home. Institutionalization of husbands
or wives does not completely take away all caregiving
activities, some aspects of caregiving may actually increase
after institutional placement (King, Collins, Given &

Vredevoogd, 1991).

8

The role of the spouse caregiver changes after
placement of their husband or wife in a long term care
facility. After institutionalization the spouse caregiver
relinquishes control of many caregiving responsibilities as
well as how caregiving is carried out. These
responsibilities are taken over by the institutional staff.
Health care workers in the nursing home are prepared to
provide most of the caregiving formerly provided by the
spouse caregiver. At this point, the role of the spouse
caregiver changes from primary caregiving to shared
caregiving. The spouse caregiver may experience difficulty
with the new shared caregiver role in the nursing home
(Willoughby & Keating, 1991). The role transition for the
spouse involves relinquishing caregiving responsibilities
while at the same time adapting to a new and formal health
care structure without defined caregiver responsibilities.

Clear descriptions of the role of the spouse caregiver
after institutionalization of their husband or wife are not
known. Surveys of nursing home personnel and families about
the role responsibilities of both staff and family indicate
overlapping of duties as well as ambiguity of role
responsibilities (Rubin & Shuttlesworth, 1983; Schwartz &
Vogel, 1990). Litwak (1981) proposed a theory of shared
functions and balanced coordination of caregiver behaviors
between staff and family, suggesting staff have primary
responsibility for technical tasks, while family members

perform non—technical tasks, although some overlapping may

9
occur. Technical tasks are repetitive basic nursing direct
care tasks which are distinguishable for billing purposes,
whereas non-technical tasks are individualized such as
applying make-up and supplying special preferred food for
patients. A lack of coordination and shared caregiving role
functions between the spouse and the staff will result in
decreased quality of care (Litwak, 1981).

Spouse caregivers lose considerable control over the
care of their husbands or wives after institutionalization
(Bowers, 1987; Hasselkus, 1988; Rubin & Shuttlesworth,
1983,); and family caregiving becomes less task oriented,
(Bowers, 1987; Hasselkus, 1988) as the physical care
formerly provided by the spouse is now performed by the
nursing home staff while the spouse assumes the
responsibility of quality care assurance. Insuring quality
care for their loved one is the highest priority for family
caregivers (BOwers, 1987). After the surrender of
responsibility for many tasks, the spouse may be anxious
about the care the staff will provide (Edelson & Lyons,
1985). Spouses assign the staff to provide professional
physical care for their loved one while they assign
themselves the role of non-technical, social, spiritual and
emotional care (Bowers, 1987). In the new situation,
families expect to assume a recognized, responsible caring
role within the institution (Schwartz & Vogel, 1990).
Important elements of the shared caregiving role for the

family include teaching, demonstrating, giving advice for

10
personalized care, observing staff and educating staff to
relate personally rather than technically (Duncan & Morgan,
1994).

The stress of transferring total care in the home to
sharing care with professional health care workers is
compounded by the ambiguity of the role for spouse
caregivers in the institution. Various studies describe
failure on the part of the institution to support the
families during the time of transition (Edelson & Lyons,
1985; Montgomery, 1982; Pratt, Schmall, Wright,& Hare,
1987). Nursing home staff are often described as adding to
family distress (Vinton & Mazza, 1994) at the time families
are seeking a shared role in caregiving, by resisting the
families efforts (Hansen, Patterson & Wilson, 1988).

Families seek active involvement in caregiving within
the institution (Hansen, et al., 1988). Studies (Bowers,
1987; Moss, Lawton Kelban & Duhamel, 1993; Shuttlesworth et
al., 1982) advocate the cooperation of institutional staff
with the families in caregiving activities. A study by York
and Calsyn (1977) of 76 patients and their families
suggested programs to help family members cope with stress
resulting from institutionalization. Montgomery (1982) after
interviewing 104 rural nursing home residents and 66 family
members concluded family must also be viewed as a client by
the institution. Duncan and Morgan (1994) in a study of 179

family caregivers of Alzheimer’s Disease patients summarized

11
that families expect recognition from nursing home staff and
that they possess expertise that could contribute to their
family member’s care.

Studies by several researchers demonstrate family
caregivers continue to provide care after placement of their
family member in a long term care facility. By their
presence and activities in the nursing home they model a
quality of care role for their institutionalized family
member. By involving themselves in ADL care home they
attempt to educate the staff about the appropriate methods

of care for their family member.

Statement of the Problem
What is the frequency of visits and type of each ADL

performed by spouses for their institutionalized husbands or

wives in a long term care facility?

Purpose

The purpose of this descriptive study is to examine the
frequency with which spouse caregivers assist with the ADLs
of their institutionalized husbands and wives.
Identification of those caregiving tasks performed by the
spouse will provide information for the ANP in primary care.
This information will provide guidance for nursing
interventions in the plan of care for spouse caregivers in
need of healthcare services. Knowledge about the spouse

caregiver’s daily activities guides the nursing process. The

l2
process is holistic, involving not only the client's
physical health but also the social and environmental
aspects of the client’s welfare. ANPs providing primary care
for the older spouse caregiver should be aware of the amount
of caregiving being done by the spouse in the nursing home.
With this knowledge, APNs are able to plan nursing
interventions for spouse caregivers.

Results of research studies call for further studies in
long term care facilities and family involvement in the
caregiving process (Bowers, 1988; Maas, Buckwalter and
Kelly, 1988; Rubin & Shuttlesworth, 1983; Schwartz & Vogel,
1990; Shuttlesworth et al., 1982). A study focusing upon
the specific care activities performed by spouses for their
institutionalized husbands or wives would provide
information about caregiving in nursing homes and may reveal
the emotional needs of the spouse caregiver whose husband or
wife has been institutionalized.

As an educator, the APN may educate the nursing home
staff about involvement in ADL care demonstrated by spouse
caregivers. It would be beneficial for nurse assistants to
know how spouse caregivers can contribute to the care of
their family member. Knowledge may improve cooperation
between staff and spouse caregivers. Quality of resident
care may improve when there is more cooperation between the
staff and the residents’ spouses. The APN demonstrates
leadership demonstrated in the rapidly changing long term

care environment when nursing education and actions are

13

based upon current knowledge generated from scientific

nursing research.

Definition of concepts

Spouse caregiver:
The self-acknowledged caregiver who has had primary
responsibility for providing assistance to his/her
spouse who is over age 55, now institutionalized and in
need of assistance in one or more ADLS.

Long term care facility or nursing home:
An institution which provides living accommodations and

care for impaired elderly in need of personal health

care.

Activities of Daily Living (ADLS):
Personal care related to eating, dressing, combing hair
or shaving, showering or bathing, using toilet, bedpan

or commode, walking, getting in and out of bed and

moving in bed.
Level of involvement in ADL caregiving:
The number of times each week the caregiving spouse

assists with the above described ADLs in the

institution.

Research questions

1) With what frequency do spouse caregivers visit with

their husbands or wives in a long term care facility?

14
What is the duration of the spouse caregiver visits
with their husband or wife in a long term care
facility?
What are the frequency and type of ADLS performed by
the spouse caregiver for their husband or wife in a

long term care facility?

Limitations

2)

Limitations of the study include the following:
Volunteers composing the sample may possess
characteristics different from caregivers who did not
volunteer to participate in the study which are unknown
to the researcher.

The varied length of institutionalized time among the
participants at study intake may influence the study
results by reflecting relocation adjustment levels.

The level of spouse activity of daily living (ADL)
caregiving may be limited by their state of health and

ability to perform ADL care.

Assumptions

The following methodological assumptions are made:

Caregiver responses reporting caregiving involvement

are accurate.
The instrument used to measure caregiver involvement of

the spouse accurately reflects ADL caregiving.

15
The following are conceptual caregiving involvements
assumptions in this study:
1) Spouse caregivers can identify their husbands or wives
needs for ADL care.
2) There are no barriers in the nursing home which prevent

the spouse caregiver from performing ADL care.

Conceptual framework

The focus of this study is to investigate spouse
involvement in caregiving after institutionalization of
their husbands or wives. One component of Bower’s theory of
family caregiving, instrumental care, provides the basis for
this study. The concepts of spousal caregiving and ADL
involvement will be integrated into Bower’s theoretical
framework.

Bower (1987) investigated aspects of caregiving from
the caregivers’ perspective. Her qualitative study revealed
that the process of caregiving is much more complex than the
commonly used definitions of caregiving. Traditional
caregiving has been defined in terms of performance of
specific caregiving tasks, while Bowers, in addition to task
performance, defines caregiving as being particular
meaningful or purposeful for the caregiver.

Bower’s description of caregiving from the caregiver’s
purposeful perspective has three important principles.
First, observable behaviors and mental activities are

included in the caregiving definition. Caregiver’s plans and

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16
decisions, which are not observable actions, have essential
consequences in caregiving. Second, caregivers make the
decisions for defining an activity as a caregiving act.
Those who are not responsible for providing care tend to be
unaware of all the components of caregiving. That is,
caregivers are more likely to describe an activity as
caregiving than would a non-caregiver. Lastly, caregivers
may perceive an activity as having more than one purpose.
For example, combing their spouse’s hair may be perceived as
a gesture of caring or a technical task or both. An activity
such as combing hair may be used to communicate different
messages and often the meaning or purpose intended by the
caregiver is not the same meaning or purpose perceived by
non-caregivers. Conflict and misunderstanding between
caregivers and non-caregivers occurs in many situations in
the caregiving process (Bowers, 1987).

Bower’s (1988) study of family caregivers of relatives
in nursing homes resulted in her categorical descriptions of
caregiving. The caregiving activities of family caregivers
are classified into five categories: preservative care,
supervisory care, preventative care, anticipatory care and
instrumental care. These five groupings have direct
influence upon the actions of the family caregiver. Only
instrumental care retains the traditional definition of
caregiving, that of a "hands on" task specific activity. The

tasks of ADLs are classified by Bower as instrumental

17
caregiving and are considered essential activities of
caregiving.

Bower’s concept of instrumental care will be used to
guide this study. Assistance in the nursing home with
performance of any of the basic ADLs will be examined. The
activities include: eating, dressing, grooming, bathing,
toileting, walking, getting in or out of bed and moving in
bed.

Bower’s family caregiving theory describes caregiving
from the perspective of the family member who is considered
to be primarily responsible for providing care for a family
member. Family caregivers may be daughters, sons, wives,
husbands, nieces and nephews. Utilizing the family caregiver
concept, this study will focus only upon the activities of
the family spouse caregiver. Bower’s concepts for caregiving
provide the framework for studying the type of spouse
caregiving inVolvement after placement of their husband or
wife in a long term care facility.

Bower’s (1988) theory of family caregiving is an
effective way of looking at the involvement in ADLS care by
the spouse caregiver after institutionalization (see Figure
1). The theory describes caregiving activities performed by
family members in the nursing home. Bower’s theory provides
the basic framework for this study and is utilized to
illustrate one behavioral aspect of continued spouse
caregiving, instrumental care, after institutionalization of

a husband or wife in a nursing home.

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Figure 1.

AT HOME

 

Spouse
Primary
Caregiver
Role

 

18

Spouse Caregiving Role in the Nursing Home

AFTER PLACEMENT IN A NURSING HOME

 

 

 

 

 

 

 

Caregiving
Involvement
Instrumental
Care

(ADLS)

 

 

 

 

 

 

Spouse
Caregiver
Role with
Nursing Home
Staff

 

 

 

 

APN Role as
Facilitator

 

 

 

CHAPTER 2

LITERATURE REVIEW

Caregiving involvement after institutionalization

Activities of ADL caregiving provided by family
caregivers are investigated as involvement in ADL care by
spouse caregivers is central to this review.

York and Calsyn (1977) performed a caregiver role study
in long term care by comparing family involvement before and
after nursing home placement of an elderly relative. Sample
included 76 patients and their families. Caregivers were 64
adult children; the remaining 12 were either spouses,
nieces, nephews, brothers or sisters. Data collected from
family interviews indicated that in general, families do not
abandon their older relatives. Many families help their
older relatives prior to nursing home placement and tend to
stay involved with their relatives after
institutionalization. Results of the study were limited in
describing actual activities performed by family members and
by the small number of spouses in the sample.

A study was done by Shuttlesworth, Rubin and Duffy
(1982) to determine whether the family caregiver or the
nursing home staff felt obligated to perform predetermined

caregiving tasks. Nursing home administrators (n = 56) and

19

H
(I)

*(3

(I)

In

)1“

20

relatives (n = 110) designated in the chart as "responsible
party" were surveyed using a 100 item ("essential" services)
inventory. Items on the inventory which are commonly
described as duties of caregivers, were grouped in the
following categories: personal care, housekeeping, diet,
activities, patient care, counseling, medical care,
security, family relations, administration, transportation,
supplies and special needs. There was nearly complete
agreement of responsibility for 55 of the tasks. There was
considerable variation of claimed responsibility for the
remaining 45 tasks items. Most significant discrepancies
were demonstrated in the categories of: personal care,
housekeeping, activities, patient care, family relations,
supplies, counseling/emotional and extras. In these areas
both the nursing home administrators and family members
claimed responsibility for task performances, possibly
leading to incongruent caregiver role expectations. This
might suggest possible conflict with the nursing home staff
and the spouse caregiver relevant to instrumental care.

This study on caregiving tasks was limited by a non-
probability sample which limits generalization. The sample
was exposed to a preselected task list which may not have
included all possible task responses. Selecting only the
nursing home administrators to participate in the survey
along with relatives who visited the home with a relatively
high degree of frequency excluded opinions of staff direct

care workers and possibly other important family members.

21

Rubin and Shuttlesworth (1983) conducted a second study
using the same measure and included the nursing home
personnel (administrators, dietary, housekeeping, Rns, LVNs
and nurses aides). Relatives of residents who described
themselves as both highly involved and not involved with
care were included in the sample. The results were similar
to the first study resulting in both staff and family
claiming responsibility for specific caregiving tasks.
Results specific to spouses were not reported.

Schwartz and Vogel (1990) used the same 100 item
("essential" services) inventory but modified the scoring
procedure to include family and staff shared responsibility
of tasks. Administrative, direct care and supportive staff
in 50 nursing homes in California and Ohio and 144
residents’ family members responded to the survey.
Overlapping of task assignment by both staff and family
still occurred however, families who visited less often and
those with relatives institutionalized one to three years
assigned more responsibility to the staff for specific
tasks. The staff rated personal care tasks as more their
responsibility while relatives indicated a willingness to
share in those activities. This study examined desired or
projected behaviors and not the actual caregiving behaviors.
Responses from spouse caregivers were not reported. All
three of the above studies indicate over-lapping

instrumental caregiving by family members and institutional

staff.

()

22

Using a convenience sample (n = 315) of community
spouse caregivers of Alzheimer’s disease or a related
disorder, Pruchno (1990) examined ADL caregiving. The
sample was primarily female (68%) and white (86%) with a
mean age of 70 years. Respondents reported the degree of
caregiving involvement in 7 ADLS. The time spend in
caregiving averaged 75 hours a week. The performance of ADL
care was the following: toileting (47%), eating (53%),
personal care (67%), bathing (66%), getting around (18%),
dressing (73%), getting in and out of bed (30%). The results
of this study are from community caregivers and probably
would not reflect spousal caregiving involvement with ADLS
in an institutional setting. What is notable is the amount
time spent per week by the spouse in providing care in the
home.

Dempsey and Pruchno (1993) sampled 107 children of
elderly nursing home residents. From a list of 28 daily
caregiving tasks, respondents were asked to indicate who was
currently doing the task as well as who they felt should be
doing the task. The tasks were identified as technical or
non-technical. If 70% or more of the respondents assigned a
task to the family the task was identified as non-technical.
Tasks that received less than 70% of respondents’ assignment
of responsibility to family members were identified as
technical. ADLs were termed technical tasks in the study.
Half of the respondents reported not performing any

technical tasks while the other half reported performing one

23

or more of the technical tasks. The study discovered
significant relationships for the respondent family members
involvement in technical tasks. Factors attributed to more
family respondent involvement in technical tasks were:
higher number of non-technical tasks done by the respondent,
younger respondents, female respondent, greater frequency of
visits, younger parent, female parent, parent’s cognition
status, greater number of parent’s illness, larger nursing
homes, staff doing more technical tasks and poorer
perceptions of the staff. Using the sample responses to
identify the technical and non-technical tasks was a
limitation of the study as different sample sets may define
technical and non-technical tasks differently. Also, adult
children caregiving may not reflect caregiving by spouses.

A qualitative study of family caregiver focus groups,
76 spouses and 103 adult children of institutionalized
Alzheimer’s disease residents, revealed family members
desired more emotional and social involvement than task
involvements. Families expected the staff to perform
technical or hands-on care with expertise, suggesting that
spouses are on alert for the quality of ADL care the staff
provides for their husbands or wives. The study was limited
to institutionalized dementia residents possible preventing
generalizing to nursing home populations (Duncan & Morgan
1994).

Moss et al. (1993) investigated time use of caregivers

in a longitudinal study of impaired elders before and after

24

institutionalization. Subjects were recruited from
applicants for admission to 12 nursing homes and from a
state agency which screens prospective Medicaid candidates
for nursing home admission. Interviews of 165 caregivers
expecting to institutionalize their family member produced a
sequential report of all activities of the waking day
(Yesterday interview). At the Time 2 interview, at least 3
months post institutionalization, 77 elders had moved to a
nursing home. ADLS examined were personal care and eating.
Personal care dropped from a mean time of 42 minutes per day
to 1 minute per day, and eating assistance mean was reduced
from 8 minutes to 2 minutes per day. Caregivers averaged a
daily gain of 107 free minutes after institutionalization.
Only 10.3% of the sample were spouses. The study does not
provide information for generalizing spouse caregivers
involvement with caregiving activities, but it does infer
that not as much time is spent for caregiving in the
institution as was spent in the home, and that personal care
time was reduced substantially after institutionalization.
Another limitation is possible inaccuracies of recall by the
respondents when using the "Yesterday" interview method.

These studies of family caregivers of institutionalized
elderly indicate the desire of families to remain involved
with caregiving after institutionalization. Some ADL care is
provided by family members after institutionalization, but
specificity and frequency is not reported. Family caregiving

studies do not report particular activities of spouse

25
caregivers. Consequently the few spouse responses reported
in the studies leave a lack of information about specific

spouse caregiving activities in the nursing home.

Frequency of visits

The frequency of visitors to residents in a long term
care facility remained stable for more than a year in a
study by Spasoff et al. (1978). Data were collected
approximately one year after institutionalization from 95
residents (67 women and 28 men). Friends and relatives
visited frequently, with relatives visiting a few times more
each week in most cases. The visiting pattern reported one
month post institutionalization was the same as that
reported a year later. The report does not detail the
visiting patterns nor relationship of visitors to the
residents in the institution. Although the study is of long
duration it reveals only very general information about
visiting frequency in institutions of long term care. The
results may imply that spouse caregivers would continue to
visit their husbands or wives for the duration of their
institutionalization.

Visiting frequency of residents in nursing homes may be
approached from the perspective of the amount of
discretionary free time reported by elderly people in the
community. Moss and Lawton (1982) studied four subject
groups contrasting in both individual characteristics and in

the environments which they lived. The groups were: 235

26

independent community residents, 158 independent public
housing tenants, 91 recipients of high-intensity in-home
service and 51 persons on an institutional waiting list. The
mean age of the subject groups was 76 years, and 60% of the
group subjects were women. The overall waking day time spent
in obligatory activities (working) ranged from 34% in the
community group to 27% in the waiting-list group, leaving
approximately 7 hours of discretionary activity time for
elderly people in the community. This might imply spouses
would have several free hours each day to visit their
husband or wife in the nursing home. The study participants
were not caregivers and their reported free time could not
be generalized to caregivers.

Hook, Sobal and Oak (1982) used a questionnaire to
assess the frequency of visitation at three nursing homes
on three consecutive Sundays, surveying 629 visitors. The
sample contained very few spouses (1.1%). Travel distance to
the nursing home had some influence upon visiting frequency
as there were fewer visits by visitors living greater
distances‘from the nursing homes. Few visited daily (5%),
14% visited semiweekly, 36% visited weekly, 18% visited
semimonthly, and 11% visited monthly. Since the sample
lacked spousal representation the results can not be
generalized to that group. The short duration and
reliability of the respondents for recalling answers to the

questionnaire may be limiting factors of the study.

27

Zarit and Whitlach (1992) reported nursing home
visiting frequency by sampling 77 family caregivers. Their
family member had dementia and had been institutionalized an
average time of 190 days. The sample contained about 19%
wives, 23% husbands and 26% daughters. These caregivers
continued to be involved in care in the institution, as more
than half reported some type of ADL assistance. Frequency of
visits was reported to be almost 4 days a week, with a mean
of 6 hours on weekdays and 3.4 hours on weekends. This study
revealed greater frequency and contact time than previous
studies, but it does not indicate specific involvement in

ADLS care frequency or visits by the spouse caregivers.

Summary

The reviewed studies indicate elderly people in general
have several hours of free time each day which may be used
for visiting. The results of visiting time in nursing home
studies are generalized, providing little visiting
information specific for each family member. Frequency of
visits and length of visiting time specific for spouse
caregivers to their husband or wives in the long term care
facility are not found.

Literature review for spouse caregiver involvement post
institutionalization has shown that several researchers
refer to one type of caregiving as ADL care which would be
classified by Bowers as instrumental care. Most of the

research is directed toward community caregivers for

28
Alzheimer’s disease and related disorders. ADL time
allocation is often generalized as personal care. Most
family caregivers studies do not distinguish between the
caregiving provided by various family members. Few studies
report caregiving characteristics specific for spouse
caregivers. This literature review describes no clear
picture of frequency in which spouse caregivers perform ADL

care after institutionalization.

CHAPTER 3

METHODOLOGY AND PROCEDURE

Original research

The original study titled "The Impact of Alzheimer’s
Disease on Family Caregivers" was funded by the National
Institute of Mental Health, #NIMH 2R0141766, to Clare
Collins, R.N., Ph.D., F.A.A.N., Principal Investigator. It
was a four—year longitudinal study of community residents.
The subjects were family caregivers for a family member with
Alzheimer’s Disease or related dementia. The purpose of the
study was to examine caregiver reactions to providing care
for persons with a dementing disease over time. Caregiver
reactions were studied following the transitions of
institutionalization and death.

The sample subjects were solicited through local
chapters of the Alzheimer's Association, Michigan
Association of Adult Day Care Centers and health-care
agencies in Southwest Michigan. Caregivers interested in
becoming a study participant returned a postcard to the
principal investigator. Trained interviewers screened the

caregivers to determine eligibility for entry into the

study.

29

30

A convenience sample (n = 338) of family, self-
identified caregivers, providing the most care to a relative
with dementia was selected to meet the following criteria:
1) 55 years of age or older; 2) dependent in at least one
basic activity of daily living (ADL) and one instrumental
activity of daily living (IADL); 3) diagnosed as having
Alzheimer’s disease or other irreversible dementia; and 4) a
resident in the community at the time of entry into the
study. Written informed consent was obtained from each
caregiver. Approval for the study was obtained from the
University Committee on Research Involving Human Subjects
(UCRIHS) at Michigan State University.

The original study design was to interview respondents
every twelve months. Actually, the average time for the
second data collection was twenty two months after the first
collection, entry into the study, and the third collection

time averaged fourteen months later (Collins, 1993).

Design

This research is a non-experimental ex post facto
descriptive study. The study purpose is to describe the
involvement in ADL care by spouse caregivers after placement

of their husbands or wives in a long term care facility.

31

Research questions

1) With what frequency do spouse caregivers visit with
their husbands or wives in a long term care facility?

2) What is the duration of visits by spouse caregivers
with their husbands or wives in a long term care
facility?

3) What are the frequency and type of each ADL performed
by spouses for their husbands or wives in a long term

care facility?

Operational definitions

Spouse caregiver:
The spouse of an elderly person in a long term care
facility who was the self—identified caregiver
providing the most care prior to institutionalization.

Visit frequency:
The number of visits per month as identified by
question 2 of the survey instrument.

Visit duration:
The mean number of minutes per visit per month as
identified by question 3 of the instrument.

Level of involvement:
The frequency with which spouse caregivers assist their
husbands or wives with ADL care per week, identified by
questions 4a, 5a, 6a, 7a, 8a, 9a, 10a and 11a in the
survey instrument.

(see Appendix A for copy of questionnaire)

32
Sample
The sample participants for this study are spouse
caregivers of dementia patients who institutionalized a
husband or wife in a long term care facility during the

course of the original study.

Sociodemoqraphic data

The variables presented for examination in this study

are age, race, gender and education.

Visitation and ADL involvement

Data for spouse visiting patterns were obtained from
responses on the Involvement Scale Items instrument.
Participants were asked if they visit their spouse once a
month or more. If the response was yes, they were asked the
average number of visits and the average number of minutes
per visit.

The Involvement Scale Item instrument also identified
the institutionalized husband’s or wife’s need for
assistance with ADL care as perceived by the spouse
caregiver. Responses for each of the eight basic ADLs were
solicited with a five-point Likert scale selection (Given,
Keilman, Collins & Given, 1990). This instrument,
operationalizing frequency of ADL care, is a modified
version of the Cornwell Involvement Inventory (Given, B. &
Given, 1985). On the Involvement Scale Item instrument,

respondents were asked if their relative needed assistance

33
with specific ADLS. The 8 ADLs were: 1) eating, 2) dressing,
3) combing hair or shaving, 4) showering or bathing, 5)
toileting or using bedpan or commode, 6) walking, 7) getting
in or out of bed and 8) moving in bed. A "yes" response led
to a second part of that question, a list, requesting
customary assistance with the ADL. Five frequency options
measuring spouse frequency of involvement in each of the
activities included once a week or less, several times a

week, once a day, several times a day and I do not help.

Reliability

Reliability is defined as "the degree of consistency or
dependability with which an instrument measures the
attribute it is designed to measure" (Polit & Hungler, 1991,
p. 653). The Involvement Scale Items instrument is a
modified version of the Cornwell Involvement Index
instrument which measures Activities of Daily Living and
Instrumental Activities of Daily Living. The portion of the
Cornwell Involvement Index instrument which measures ADLs

was analyzed for reliability. The alpha coefficient was 0.89

(Given, B. & Given, 1985).

Protection of human rights
The study data set are stored on diskettes in the

College of Nursing at Michigan State University. Approval of

human rights protection procedures for this study was

mm.

34
obtained from the University Committee on Research Involving

Human Subjects (Appendix B).

Analysis of the data

Sociodemographic data, age, race, gender and education
are described in terms of mean and range and percentage.
Spouse caregiver visitation with their institutionalized
husband or wife is analyzed for frequency and duration with
means, range and percentages. Participation in numbers of
ADLS by spouse caregivers is shown by percentage of the
sample group. A frequency distribution indicating the amount
of assistance provided by the spouse caregiver for each of

the eight ADLS is utilized.

CHAPTER 4

RESULTS AND DISCUSSION

Sample and background material

A total of 53 spouse caregivers reported placing a
husband or wife in a nursing home. Spouse gender was almost
equally balanced as 53% (N = 28) were females and 47% (N =
25) were males. The average age was 69 years. The sample was
98% caucasian, and 54.7% possessed some college or
professional education. Characteristics of the spouse

caregivers are displayed in Table 1.

Table 1
Selected Demographic Caregiver Characteristics (N = 53)

 

 

Group N % Mean Range
Gender

Male 25 47

Female 28 53
Age 69 51-86
Race

White 52 98

Black 1 2
Education

Grade School 5 9.4

Some High School 5 9.4

High School Graduate 14 26.4

Some College or

Professional Education 29 54.7

 

35

36
The mean age of the institutionalized husband or wife
was 71 years with a range of 56 to 84 years. The average
length of institutionalization was 11.5 months with a range

of 1 to 20 months.

Research guestion

1. With what frequency do spouse caregivers visit their
husbands or wives in a long term care facility?

With the exception of one wife, all spouse caregivers
visited their husbands or wives at least monthly. The range
of visits was very wide, from 1 to 90 a month, with an
average of 26 visits a month. Table 2 displays the

visitation pattern.

Table 2
Monthly Visits of Spouse Caregivers to Nursing Home

 

 

Number of Visits Percent of Respondents N
(N = 50)

1 1.9 1
4 5.7 3
7 1.9 1
8 5.7 3
9 1.9 1
10 1.9 1
12 13.2 7
14 1.9 1
15 5.7 3
16 9.4 5
27 3.8 2
28 1.9 1
30 22.6 12
36 1.9 1
48 1.9 1
60 7.5 4
75 1.9 1
90 3.8 2

 

37

Research question

2. What is the duration of spouse caregiver visits with
their husbands or wives in a long term care facility?

Most caregivers spouses reported visiting either one
hour (22.6%) or two (24.5%) hours. A smaller number (13.2%)
visited for 3 hours. Two reported visiting for 6 hours. The

average visiting time was 1.8 hours (see Table 3).

Table 3
Length of Spouse Caregiver Visits to Nursing Home

 

 

 

 

Minutes per visit Percent of Respondents N
(N = 52)
10 1.9 1
30 13.2 7
45 1.9 1
60 22.6 12
75 3.8 2
90 5.7 3
100 1.9 1
120 24.5 13
150 1.9 1
180 13.2 7
240 3.8 2
360 3.8 2
Research guestion
3. What is the frequency and type of ADLs performed by
spouses for their husbands or wives in a long term care

facility?

As shown in Table 4, spouse caregivers were involved
with all ADLs. Assistance was rendered for the following
ADLs: eating, dressing, grooming, bathing, toileting,

walking, getting in and out of bed and moving in bed. More

38
spouse caregivers (66%) assisted with eating than any other
ADL. Grooming (52.8%) and walking (33.9%) ranked second and

third respectively for spouse participation.

Table 4
Percentage of Spouse Caregivers Involved in ADLS

 

 

Activities of Number of Helping Percent of
Daily Living Spouse Caregivers Sample
(N = 53)
Eat 35 66.0
Groom 28 52.8
Walk 18 ‘ 33.9
Dress 9 17.0
Toilet 8 15.2
In & Out of Bed 5 9.5
Move in Bed 4 7.6
Bath 1 1.9

 

The need for specific ADL care varied among the
institutionalized spouses, and spouse caregiver involvement
also varied. Shown in table 5 are the number and percent of
institutionalized spouses who needed assistance with ADLS.
Also shown are the number and percent of spouse caregivers

who provided assistance. Institutionalized spouses

39

Table 5
Spouse Caregivers Providing Help with ADLS when Needed

 

 

Activities of Spouses Needing Spouse Caregivers
Daily Living Help with ADLS Providing Needed Help
Bath 98.1% 1.9%
N = 51 N = 1
Groom 96.2% 54.9%
N = 51 N = 28
Dress 92.5% 18.4%
N = 49 N = 9
Eat 81.1% 81.4%
N = 43 N = 35
Bed in & Out 58.5% 16.1%
N = 31 N = 5
Walk 50.9% 66.7%
N = 27 N = 18
Toilet 49.1% 30.1%
N = 26 N = 8
Move in Bed 41.5% 18.2%
N = 22 N = 4

 

required the most assistance with bathing (98.1%), grooming
(96.2%) and dressing (92.5%). Of the spouse caregivers who
provided assistance, 28 (54.9%) helped with grooming, 9
(18.4%) helped with dressing and 1 (1.9%) helped with
bathing. Spouse caregivers provided the most assistance with

eating (81.4%), walking (66.7%) and grooming (54.9%).

\

40

Table 6
Number of ADLs and Number of Spouse Caregivers Providing
Assistance (N = 53)

 

 

Number of ADLS Spouse Caregivers

N %
O 10 18.9
1 12 22.7
2 12 22.7
3 10 18.9
4 3 5.7
5 4 5.5
6 2 3.8

 

Table 6 shows the number of activities of daily living
with which spouse caregivers provide assistance. Out of
eight activities of daily living 2 spouse caregivers
involved themselves in 6 activities, while 10 spouse
caregivers were not involved in any activities. Most spouse
caregivers were involved in between 2 and 3 activities.

How often spouse caregivers assist with each ADL is
illustrated in Table 7. Assistance frequency ranged from
once a week to several times a day. It appears that a small
number of spouse caregivers were involved in ADLS several

times a day.

41

Discussion

Results of this study indicate spouse caregivers
frequently visit their husbands or wives after
institutionalization. Caring does not stop with
institutionalization. Spouse caregivers average nearly daily
visits to nursing homes. The average number of visits by
spouse caregivers in this study was 26 times a month. Zarit
(1992) found family caregivers (26% daughters, 42% spouses,
32% other relatives) visit on average 4 days a week, while
York and Calsyn (1977) found family caregivers (84%
children, 16% spouses and other family members) visit 12
times a month or about three times a week. Moss et a1.
(1993) reported 68% of family caregivers (58% children,

10% spouses, and 32% others) visit at least once a month

and 2% never visit. The results of this study disclose, with
the exception of one wife, spouse caregivers visit nearly
every day, which is more numerous than the visiting
frequency reported by researchers for other family members.

The mean visiting time for spouse caregivers in this
study was 1.8 hours. This was a longer visiting time than
that reported by Moss (1993). She reported family
caregivers visit an average time of 1.2 hours. Zarit (1992)
reported family caregivers visit an average of 6 hours
during the week and 3.5 hours on weekends for a total of 9.5
hours per week. Spouse caregivers in this study spent on

average 11.3 hours visiting each week.

42

Table 7
ADL Involvement by Spouse Caregivers

 

 

Activities Several Once 2-6 Once
of Daily Times a Times a
Living a Day Day a Week Week
Eat 22.9% 22.9% 34 3% 20 0%
n = 35 n = 8 n = 8 n = 12 n = 7
Groom 7.1% 21 4% 28.6% 42.9%
n = 28 n = 2 n = 6 n = 8 n = 12
Walk 27.8% 11.1% 33 3 % 27.8%
n=5 n=2 n‘6 n=5
Dress 11.1% 88.9%
n = 9 n = 1 n = 8
Toilet 25 0% 12.5% 37.5% 25.0%
n = 8 n = 2 n = 1 n = 3 n = 2
Bed In & Out 20.0% 40.0% 40.0 %
n = 5 n = 1 n = 2 n - 2
Move in Bed 25.0% 25.0% 50.0%
n=4 n=l n=l n=2
Bath 100%
n = 1 n = 1

 

There may be several explanations for the frequency of
spouse caregivers visits in this study including emotional
attachment, ease of commuting and good health. Strong
emotional attachments between the spouses may elicit a need
to be near their husband or wife. They may have experienced

loneliness in the home after institutionalization,

43
preferring to spend time visiting in the nursing home than
being home alone.

Visit frequency may have been influenced by ease of
commuting to the nursing homes. Spouse caregivers may have
had sufficient travel conditions to facilitate frequent
visits to the nursing homes. The nursing home may have been
located close to the spouses’ residence. Spouse caregivers
may have driven their own automobiles and experienced no
problems with traffic congestion. If the spouse caregivers
did not drive an automobile, convenient and acceptable
public transportation may have been available or there may
have been an abundant support network of individuals willing
to chauffeur spouse caregivers to the nursing home.

The health of spouse caregivers may have permitted
their frequent and lengthy visitations. Seven spouse
caregivers reported visiting two to three times a day, while
the average was almost one daily visit. Four spouse
caregivers reported visiting for three to six hours when the
average amount of time spent was 1.8 hours. The frequency
of visits as well the length of time would require the
spouse caregivers to have good physical health to continue
spending a long time away from their homes nearly every day.

Spouse caregivers visit their husbands or wives in the
nursing home frequently and for long periods of time after
placement. These visitation results dispel the stereotype
that nursing homes act as "dumping-grounds" for infirm

family members.

44

All institutionalized spouses needed ADL assistance and
results showed 81.1% of spouse caregivers provided
assistance with ADLS. Most helped with two or three ADLs,
but six spouse caregivers were involved to a greater degree
in the care of their husbands or wives. These 6 spouse
caregivers (11%) visited from 3 hours to 6 hours daily and
assisted with up to 6 ADLs. This daily schedule suggested
they were fully absorbed in caregiving activities. Long
visiting hours combined with high levels of caregiving
involvement could be stressful for selected spouse
caregivers.

Overall, the greatest amount of involvement of spouse
caregivers was with eating, grooming and walking. There may
be several different reasons for assistance with eating
being performed most frequently by spouse caregivers.
Assistance with eating may be a pleasant experience for
spouse caregivers. Or, the spouse caregiver may believe the
nursing home staff does not assist their husband or wife
skillfully, timely or courteously and the spouse feels
obligated to fill a need. Also, it is not unusual for
nursing home staff to encourage spouse caregivers to help
when eating assistance is needed and this may prompt more
spouse caregiving involvement. The last explanation for the
high frequency of spouse caregiver involvement is that
opportunities exist more than three times each day for

assistance with eating.

45

More than half of involved spouse caregivers reported
participation in grooming. Grooming is described as combing
hair or shaving. Spouse caregivers possibly assist with
grooming to fill a personalized need of their husband or
wife. Hair care done by nursing home staff tends to be
standardized. Spouse caregivers may want to see their
husbands or wives with their own individualized hair style.
Because shaving is time consuming, nursing home staff may
encourage spouse caregivers to perform the shaving task for
them. Overall, spouse caregivers may experience a good
feeling from seeing positive effects of their personalized
care and are likely to persevere in individualized grooming
care.

Of the involved spouse caregivers, 18 helped their
spouse with walking. This may be explained by ample
opportunity for participation and the pleasure of the
activity. In addition, exercise is often a part of the
nursing plan and the staff tend to support spouse
caregivers’ walks with their husbands or wives.
Encouragement from staff, ample opportunities and probable
feelings of accomplishment are plausible reasons for spouse
caregiver’s frequent participation in walking.

Fewer numbers of spouse caregivers provided needed help
with toileting, dressing, move in bed, in and out of bed,
and bathing. Despite nearly all institutionalized spouses
needing help with bathing, only one spouse caregiver

furnished assistance. The possible reasons are lack of

46
opportunity and lack of physical ability. The need for
performing some of the activities may not have existed
during the time the spouse was visiting. As a group, spouse
caregivers whose mean age was 69 years may not have
sufficient strength for assisting with all of the above
activities. It is possible that those were the activities
spouse caregivers were unable to perform at home. The lack
of ability to assist their spouse with toileting, dressing,
moving in and out of bed and bathing may have prompted
placement in the nursing home.

This study was conducted utilizing Bower’s theory of
family caregiving as a theoretical framework. It examined
ADL caregiving by spouse caregivers, classified as
Instrumental care in Bower’s theory. Assistance with all of
the ADLs (bathing, eating, dressing, grooming, walking,
toileting, getting in and out of bed and moving in bed) was
reported by spouse caregivers.

According to Bower’s theory activities performed by
family caregivers have specific purposes and there may be
several reasons for a caregiver’s single act. This study
reveals spouse caregivers involve themselves in ADL
activities which are typically performed by nursing home
staff. This might suggest the activity is being performed
for reasons other than to actually accomplish a task. The
reasons for the spouse caregivers’ behaviors in this study
may be similar to those proposed by Bower. She suggests

family caregivers perform tasks in the nursing home for

47
several reasons: to preserve their family member’s dignity,
to demonstrate and teach the staff personalized techniques,
and to let the staff know their family care—recipient is a
person who is loved.

The majority of the sample spouse caregivers were well
educated as 54.7% possessed college or professional
education. Spouse caregivers’ formal education combined with
knowledge from caregiving experiences was probably equal to
or exceeded caregiving knowledge possessed by nursing home
staff workers who provided ADL basic care. They may have
felt the staff needed more education about caring for their
husbands and wives. They might have expected a higher
quality of care than was being provided in the nursing home
and they possibly participated in selective ADLS to enhance
caregiving quality for their husbands or wives.

Bower’s theory of family caregivers’ actions having
more than one purpose could also be supported by other
researchers by implication. Several researchers discovered
families spend time teaching the nursing home staff about
their care-recipient resident. Chenoweth (1986) found family
caregivers frequently act to teach institutional staff about
how to care for dementia relatives. Family caregivers felt
strongly about the care of their family member and spend
time demonstrating their expectations of care to the staff
(Hasselkus, 1988; Townsend et al., 1989). Family member
caregivers also attempt to become more socially and

emotionally involved with the staff so that the staff will

48
react more positively toward their institutionalized family
member (Duncan & Morgan, 1994). Spouse caregivers in this
study who involved themselves with ADL tasks may have been
acting to teach the staff about their husbands or wives.

Several previous studies of family caregivers in the
nursing home reveal both family and staff claim
responsibility for providing personal care (Rubin &
Shuttlesworth, 1983; Schwartz & Vogel, 1990; Shuttlesworth
et al., 1982). It would appear from this work that spouse
caregivers perform personal care for their husbands or
wives, giving support to those studies.

York and Calsyn’s (1977) research revealed family
caregivers express a lack of anything to do during their
visits and that families want to become involved in
activities in the nursing home. After institutionalization,
residents tend to become immobile and sit for hours doing
nothing (Spasoff et al., 1978). Walking is an activity
spouse caregivers probably use to occupy their time as well
as to provide therapy. Spouse caregivers in this study
(67%), in addition to eating and grooming, were involved
with walking their husbands or wives. Eighty one percent of
all spouse caregivers in this study assisted with ADL care.
These results appear to support York’s findings that
families desire involvement in the nursing home.

Although the framework for this study is the model from
Bower’s theory of family caregiving, a more realistic

description of spouse caregivers in the nursing home is

49
depicted in Figure 2. Research about spouse caregivers of
institutionalized family members combined with results of
this study indicate spouse caregiver involvement is not an
integral component of care within nursing homes. Although
spouse caregivers provide ADLs care almost daily in the
nursing home, their assistance is not routinely integrated
into the plan of care designed by nursing home staff. Spouse
caregivers are viewed as separate or apart from their spouse
and not essential in the caregiving process.

The model from Bower’s theory (Figure 1) shows a
picture of spouse caregiving from the perspective of family
caregivers continuation of care for their spouse after
placement in a long term care facility. Spouse caregivers
seek involvement. Figure 2 represents reality in nursing
homes. It diagrams the position of spouse caregivers as it

actually relates to the formal organization of the long term

care business.

Summary

More than 98% of spouse caregivers visit their spouses.
Of visiting spouse caregivers, 81% were actively involved
with one or more ADLs. These findings generally support
other research indicating family caregivers continue to
provide care after institutionalization of their spouses,
however, the results of this study add clarity to the spouse

caregiver role after institutionalization of their spouse.

50

Figure 2. Spouse Caregiving Involvement in the Nursing
Home/Long Term Care Facility

LONG TERM CARE FACILITY

 
 
 

Administrator

Director of
Nurses

N

  
 
   
   

 
   
 
 
  

\l/

Staff
V- Nurses

    

   

 

Nurses
Aides N

 

SPOUSE
CAREGIVER

 

  
 
   

KDietitian

   
 

9

 

Activity,»
Director

    
      
    

7t

   

Volunteers

Facility
Owner

   

CHAPTER 5

SUMMARY AND CONCLUSIONS

Dismiss

In this descriptive study spouse caregiver visitation
and involvement in ADLS in the nursing home was analyzed for
frequency. In this chapter study limitations, existing
literature, future research, implications for advanced

nursing practice and for education of healthcare providers

at all levels will be discussed.

Limitations

The retrospective design of this work is a major
limiting factor for this study. Although Bower’s theory of
family caregivers guided the study it was possible to
analyze only a portion of the theory, Instrumental
caregiving. The questionnaire used to measure instrumental
care reported spouse caregiving involvement in eight ADLs.
Investigation of these activities constitute only one part
of Bower’s theory and did not examine the other four care
categories. In addition to categorizing types of care
performed by family caregivers, Bower’s theory describes

family caregivers as having specific purposes for caregiving

51

52
acts. This study did not examine spouse caregivers’ purposes
in caregiving acts.

Another limitation of the study is the small number of
participants in the sample (n = 53). A small sample size
decreases the possibility of the sample being a true
estimate of the population (Polit & Hungler, 1991). The
volunteers in this sample were predominately caucasian and
well educated. Their responses may not represent the
populations of those who are non-volunteers, non-caucasian,
and less educated. All were caregivers of dementia patients
who might receive more direct care from their spouse
caregivers than would cognitively intact patients by virtue
of their "helplessness". These conditions would prevent
generalization to a larger population.

The instrument used in the study was a self-report with
closed-end questions. Data gathered from fixed-alternative
limit the responses. It may not offer all the responses the
subjects may select. Thus the data may not reflect all of
the possible responses from the sample.

Discrepancies in institutionalization time of the
sample subjects may be another study limitation. Spouse
caregivers who recently placed their husbands or wives in a
nursing home may react differently from those of longer time
placements. Time requirements for each spouse caregiver’s
adaptation to their husband’s or wife’s placement in the

nursing home may have influenced their responses.

53
Implications for advanced nursing practice

This study has many implications for Advanced Practice
Nurses (APNs) serving the elderly, particularly those within
institutions of long term care. The application of Bower’s
theory in this study provides guidelines and useful concepts
by which the APN may view the caregiving role of spouses
within the institution.

As a clinician in primary care, the APN assesses the
capabilities, needs and goals of spouse caregivers and may
identify activities within Bower’s instrumental care
category which would be beneficial to spouse caregivers.
These activities may meet the social, mental and physical
needs of spouse caregivers. In this process the APN would be
alert for spouse caregivers who becomes overly involved in
caregiving, to the detriment of their own health. Health
management of spouse caregivers is holistic, it includes
emotional, spiritual and physical elements which may impact
health. This means that caregiver spouses should ideally be
offered primary care services in the nursing home along with
their institutionalized spouse. Assessment and development
of health care plans which include spouse caregivers’
personal goals as well as goals for their husbands or wives
is an important aspect of the APN role.

Whenever particular activities are identified as
appropriate in the role of spouse caregivers within the
institution access to necessary materials and staff

cooperation must be assured. The APN, as an advocate, guides

54
this process with support and encouragement by welcoming
spouses presence and involvement in the nursing home.
Through regular evaluations the APN makes timely plan
modifications so that progress toward the spouse caregivers’
goals are maintained.

APNs working within nursing homes should support shared
caregiving by spouse caregivers. They should find out the
desires of spouse caregivers and help them achieve their
goals. In order to assure spouse caregiver success, APNs
must educate nursing home personnel about the importance of
spouse caregivers’ participation in caregiving activities.
APNs should also encourage spouse caregivers to join
together to support each other in their caregiving roles.
Belonging to a support group may assist spouse caregivers in
times of stress. Spouse caregiver support groups should be
encouraged, respected and function within nursing homes.

Potential travel difficulties for visiting should also
be explored. The resolution of problems which spouse
caregivers may experience commuting to visit their spouse
should be'a consideration of health care providers, APNs and
nursing home staff.

APNs in primary care have opportunities as well as the
responsibilities for changing spouse caregiver status by
speaking on behalf of spouse caregivers in the nursing home
so that they are viewed as an integral component in the
care of their husbands or wives. The lack of a clear

definition of a spouse caregiver role in the institution as

55
well as ambiguity of family/staff caregiving task
responsibility has been reported in several research
projects. Providing theory based caregiving knowledge might
clarify the roles of spouse caregivers. Clarification of
share caregiving in the institution, resulting in a more
clear definition of responsibilities, may reduce job over—
lap and spouse conflict with the staff.

As an educator the APN may provide in-service education
programs to nursing home personnel based upon Bower’s theory
of family caregiving. Although all health care workers with
the elderly population should benefit, the target groups for
this information would be nursing aides and Licensed
Practical Nurses (LPNs). Burgio et a1. (1990), in a study in
a teaching nursing home, demonstrated LPNs and nurses aides
in long term care workers have the most frequent contact
with residents. By association, nurses aides are in frequent
contact with the residents’ families. Research shows
families confrontations with staff regarding poor quality of
resident care are quite frequent and that residents’ wives
are shown to be the most orally aggressive toward the staff
(Vinton & Mazza, 1994). If health care workers had more
knowledge about the importance of spouse caregivers’ role
within the institution, conflicts between family caregivers
and the institutional staff may be reduced. Education might
promote staff cooperation and thus clarify the role

performance of the spouse caregiver in the nursing home.

56

Not only is there a role for APNs within long term care
facilities, there is also a role outside as a consultant.
Through consultation, APNs may assist the facility personnel
in recognizing the need for the development and
implementation of an acceptable and responsible position for
spouse caregivers. The APN may provide information about
the role of Spouse caregivers to those charged with making
decisions in long term care. Once the position is
legitimized by recognition by the administration, the
process of shared caregiving between spouse caregiver and
staff might be achieved through a system of mutual respect
and common goals. This would provide more continuity of care

from the home to the institution.

Implications for existing literature

Research studies in the literature relating to spouse
caregiving in institutions of long term care are limited.
Typically, spouse caregiver participation is within the
context of the larger family group. This study looked at
spouses only and described the visiting and ADL care
performed by spouse caregivers. It should add clarity to the
role of the spouse caregiver in the nursing home. The
findings of this work contribute research information about
visiting patterns and ADL care performed by spouse
caregivers for their husbands or wives who are

institutionalized in long term care facilities.

57
Recommendations for further research

The retrospective design of this research project
provides only limited opportunity to utilize Bower’s four
categories of family caregiving. Theory categories of
preservative care, preventative care and anticipatory should
be examined. Bower (1987) has shown these categories of care
to be of great importance to family caregivers. A research
design containing all five of Bower’s family caregiver care
categories as well as purpose of the caregiving acts would
increase research knowledge about spouse caregiver
activities after institutionalization of their husband or
wife.'

A longitudinal study to examine spouse caregiver
health, involvement in ADLs and satisfaction at three
months, six months and one year after institutionalization
is recommended. The transition from home care to nursing
home care usually requires a great deal of adjustment. Six
weeks to three months is the average length of time for
adaptation, but some residents never adapt (Greenfield,
1984). Collections of data over a long period of time after
institutionalization may indicate changes in the behavior of
spouse caregiving involvement in ADL care.

Length of marriage and spouse caregiver age are
additional variables for future investigations. There may be
significant differences in spouse caregiving based upon age
classifications of young—old, old-old and oldest-old. Length

of years married may also impact spouse caregiving

58
involvement. Future investigations of spouse caregivers
visiting their husbands or wives in nursing homes might
examine various factors which may influence the frequency of
visits by the spouse caregiver to the nursing home. Existing
research suggests mileage as one factor influencing visiting
frequency for all visitors, relatives and non—relatives
(Hook et al., 1982). More information about travel distance
as well as other transportation problems may add knowledge
about the frequency of spouse caregivers visits to the
nursing home.

The present study described spouse caregivers, but it
did not distinguish between spouses by gender. Women and men
may be involved in different caregiving activities and with
differing frequency. Thus gender may have an influence on
performance of specific caregiving activities and is an area
worthy of more inquiry.

The attitude of the nursing home staff may also
influence spouse caregiving in the institution. Future
studies may examine spouse caregiver role from the
perspective of the staff. The study should elicit attitude
information from all departments in the nursing home. Such a
study might discover attitudes on the part of the staff that
have important bearing upon the caregiving behaviors of
spouse caregivers. Researchers of spouse caregivers in long
term care facilities find there is no defined role for

spouse and often describe conflicts between spouse

59
caregivers and the staff of nursing homes. An attitudinal

study may provide insight for solving of this problem.

Summary

Limitations of the study were presented. Implications
for advanced nursing practice were discussed. Contributions
to current literature regarding spouse caregiving activities

in nursing homes were discussed as well as recommendations

for future research.

APPENDIX A

60
APPENDIX A

MODIFIED VERSION OF THE CORNWELL INVOLVEMENT INVENTORY

(Listed below are the questionnaire items used in this
study.)

1. Now that your relative is living in a different care
setting, do you still visit him/her once a month or
more?

YES (1) (Go to question #2)
NO (2) (Go to question #12)
2. If YES, how many times per month (on the average)?

(WRITE IN NUMBER)
(Number of times/month)

3. How long do you usually stay each time you visit?
(WRITE IN NUMBER)

(Average number of minutes per visit)

4. Does your relative need help with eating?
NO (2) (Go to question #5)
YES (1) (Go to question #4a)

4a. If YES, how often do you help your relative with
eating?

Once a week or less than once a week. (1)

Several times a week (2-6). (2)
Once a day. (3)
Several times a day. (4)
I do not help. (5)
5 Does your relat1ve need help Wlth dress1ng?
NO (2) (Go to question #6)
YES (1) (Go to question 5a)
5a. IF YES, how often do you help your relative with

dressing?
Once a week or less than once a week. (1)
Several times a week (2—6). (2)
Once a day. (3)
Several times a day. (4)

I do not help. (5)

61

Does your relative need help with grooming such as
combing hair or shaving?

NO (2) (Go to question #7)
YES (1) (Go to question #6a)

If YES, how often do you help your relative with
grooming such as combing hair or shaving?

Once a week or less than once a week. (1)
Several times a week (2-6). (2)

Once a day. (3)

Several times a day. (4)

I do not help. (5)

your relative need help with taking a shower or

NO (2) (Go to question #8)
YES (1) (Go to question #7a)

If YES, how often do you help your relative with

taking a shower or bath?

Once a week or less than once a week. (1)
Several times a week (2-6). (2)

Once a day. (3)

Several times a day. (4)

I do not help. (5)

your relative need help with using toilet, bedpan

or commode?

NO (2) (Go to question #9)

YES (1) (Go to question #8a)

Not applicable, relative has catheter/used
diapers/is incontinent (3) (Go to question #9)

IF YES, how often do you help your relative to use
toilet or commode?

Once a week or less than once a week. (1)
Several times a week (2-6). (2)

Once a day. (3)

Several times a day. (4)

I do not help. (5)

your relative need help with walking?

NO (2) (Go to question #9a)

YES (1) (Go to question #10)

Not applicable, relative does not walk (3)
(Go to question #10)

10.

11.

Does
bed?

H
m

0

Does

H
9)

l

62

If YES, how often do you help your relative with
walking?

Once a week or less than once a week. (1)
Several times a week (2-6). (2)

Once a day. (3)

Several times a day. (4)

I do not help (5)

your relative need help with getting in and out of

NO (2) (Go to question #10a)

YES (1) (Go to question #11)

Not applicable, relative does not get out of bed
(3)

(Go to question #11)

If YES, how often do you help your relative with
getting in and out of bed?

Once a week or less than once a week. (1)
Several times a week (2-6). (2)

Once a day. (3)

Several times a day. (4)

I do not help. (5)

your relative need help with moving in bed?

NO (2) (Go to question #11a)
YES (1) (Go to question #12)

If YES, how often do you help your relative move
in bed?

Once a week or less than once a week. (1)
Several times a week (2—6). (2)

Once a day. (3)

'Several times a day. (4)

I do not help. (5)

APPENDIX B

 

OFFICE OF
RESEARCH
AND
GRADUATE
STUDIES

University Committee
Research Involving
Human Suhiect:
(UDBIHS)

Michigan State University
232 Administration Building
East Lansing, Michigan
48824-1046

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

The Michigan State University
lDEA is Institutional Diversity.
Excellence in Action.

MSU is an aflinnative—acti'on.
eat/at oozortunity institution

 
   
 

63

 

APPENDIX B
UNIVERSITY
March 21, 1995
TO: Frances L. Markley
4444 S. Bagleg
Ithaca, Mi 4 847
RE: IRBt: 95-140
TITLE: agggSAL CAREGIVING INVOLVEMENT IN THE NURSING
REVISION REQUESTED: N/A
CATEGORY: l-E
APPROVAL DATE: 03/20/95

The University Committee on Research Involving Human Subjects'(UCRIHS)
review of this project is complete. I am pleased to adv se that the
rights and welfare of the human subjects appear to be adequately
protected and methods to obtain informed consent are appropriate.

heretore, the UCRIHS approved this project including any revision
listed above.

RENEWAL: UCRIHS approval is valid for one calendar year, beginning with
the approval date shown above. Investigators planning to
continue a project be ond 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 rev ew.

REVISIONS: UCRIHS must review an changes in procedures 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 approved protocol at any 0 her time during the year
send your written request to the CRIHS Chair, requesting revised
approval and referencing the project's IRE # and title. Include
in your request a descr ption of the change and any revised
ins ruments, consent forms or advertisements that are applicable.

PROBLEMS]

CEANOES: Should either of the followin arise during the course of the
work, investi ators must noti UCRIHS promptly: {1) problems
(unexpected e de effects comp aints, e c.) involv n uman
subjects or (2) changes in the research environment or new
information indicating greater risk to the human sub ects than
existed when the protocol was previously reviewed an approved.

If we can be of any future help please do not hesitate to contact us
at (517)355-2130 or FAX (517)3 6- 171.

Sincerely,

   

David E. Wrigh
UCRIHS Chair

DEW:pjm

cc: Carla L. Barnes

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