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thesis entitled
THE PERCEPTION OF FAMILY SUPPORT RELATED TO POSITIVE

AND NEGATIVE BELIEFS ABOUT CAREGIVING AMONG A
GROUP OF DAUGHTERS CARING FOR ELDERLY MOTHERS

presented by

Carol Ann Wank

has been accepted towards fulfillment
of the requirements for

Master nLSnience. degree in Ngrsing

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Date

 

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TO AVOID FINES return on or before date duo.

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MSU In An Affirmative Midi/EM Opportunity Inflation
W

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THE PERCEPTION OF FAMILY SUPPORT RELATED TO POSITIVE
AND NEGATIVE BELIEFS ABOUT CAREGIVING AMONG A
GROUP OF DAUGHTERS CARING FOR ELDERLY MOTHERS

BY

Carol Ann Wank

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

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ABSTRACT
THE PERCEPTION OF FAMILY SUPPORT RELATED TO POSITIVE

AND NEGATIVE BELIEFS ABOUT CAREGIVING AMONG A
GROUP OF DAUGHTERS CARING FOR ELDERLY MOTHERS

BY

Carol Ann Wank

This project is a descriptive correlational study of
one hundred twenty daughters caring for elderly mothers post
hospitalization. Subjects were recruited from twenty seven
hospitals and visiting nurse associations as part of a
larger study conducted at Michigan State University. The
goal of this project was to examine the effects of perceived
family support on positive and negative beliefs about
caregiving. The project utilizes secondary analysis of
data. Quantitative data analysis was used to look for
correlations among the dependent variables of positive and
negative beliefs about caregiving and the independent
variable family support. Demographic data was used for
descriptive purposes to describe the sample. It was
hypothesized that family support will be positively
associated with positive beliefs about caregiving and family
support will be negatively associated with negative beliefs
about caregiving. Correlations between the study variables
in this study were not significant. Family support was
perceived to be low by caregivers. Positive beliefs were

more strongly expressed than negative beliefs.

ACKNOWLEDGMENTS

A special thank you to Barbara Given, PhD, my committee
chairperson for her guidance, encouragement and expert
academic advice. Thank you also to my other committee
members Sharon King, PhD, and Linda Spence, PhD, for their

assistance in preparing this thesis.

 

I would also like to thank the “Family Care Studies” at
Michigan State University for the use of the data in this
study. A special thank you also to Joanne Pohl, PhD, for

the idea for this project.

iii

TABLE OF CONTENTS

Page
LIST OF TABLES . . . . . . . . . . . . . . . . . . . . . Vi

LIST OF FIGURES . . . . . . . . . . . . . . . . . . . . Vii

INTRODUCTION . . . . . . . . . . . . . . . . . . . 1
Purpose of the Study . . . . . . . . . . . . . . . . 4
Statement of Purpose . . . . . . . . . . . . . . . . 5

CONCEPTUAL FRAMEWORK . . . . . . . . . . . . . . . . . . 5
Introduction . . . . . . . . . . . . . . . . . 5
Positive Beliefs About Caregiving . . . . . . . . . 6
Negative Beliefs About Caregiving . . . . . . . . . 7
Family Social Support . . . . . . . . . . . . . . . 8
Conceptual Framework . . . . . . . . . . . . . . . . 10

REVIEW OF THE LITERATURE . . . . . . . . . . . . . . . . 17
Introduction . . . . . . . . . . . . . . . . 17
Daughter-Mother Caregiving . . . . . . . . . . . . . 17
Summary . . . . . . . . . . . . . . . . . . . 23
Positive Beliefs About Caregiving . . . . . . . . . 23
Summary . . . . . . . . . . . . . . . . . . . 29
Negative Beliefs About Caregiving . . . . . . . . . 30
Summary . . . . . . . . . . . . . . . . . . . . . 40
Family Support . . . . . . . . . . . . . . . . . . . 41
Summary . . . . . . . . . . . . . . . . . . . . . . 51

METHODOLOGY . . . . . . . . . . . . . . . . . . . . . . . 52
Overview . . . . . . . . . . . . . . . . . . . . . . 52
Basic Design . . . . . . . . . . . . . . . . . . 52
Operational Definitions . . . . . . . . . . . . . . 52
Selection of Subjects . . . . . . . . . . . . . . . 53
Instrumentation . . . . . . . . . . . . . . . . . 54
Data Collection Methods . . . . . . . . . . . . . . 56
Analysis of Data . . . . . . . . . . . . . . . . . . 57
Protection of Human Subjects and Approval . . . . . 58
Assumptions and Limitations . . . . . . . . . . . . 59
Hypotheses . . . . . . . . . . . . . . . . . . . . . 59

RESULTS . . . . . . . . . . . . . . . . . . . . . . . . . 59
Sample . . . . . . . . . . . . . . . . . . . . . . . 60
Family Support . . . . . . . . . . . . . . . . . . 63
Positive Beliefs About Caregiving . . . . . . . . . 67

iv

 

Table of Contents (cont.)

Negative Beliefs About Caregiving . . . . . . .
Discussion . . . . . . . . . . . . . . . . . . .

DISCUSSION AND IMPLICATIONS FOR PRACTICE AND RESEARCH
Conceptual Model . . . . . . . . . . .
Limitations . . . . . . . . . . . . .
Implications for Nursing Practice . .
Implications for Further Research . .

LIST OF REFERENCES . . . . . . . . . . . . . . . . .
APPENDICES

Appendix A . . . . . . . . . . . . . . . . . . . . .
Appendix B . . . . . . . . . . . . . . . . . . . . .

Page

71
74
75
77

 

Table

Table

Table

Table

Table
Table

Table

Table

Table

LIST OF TABLES

Social Demographics - Caregiver and Care
Recipient . . . . . . . . . . . . . . . . . . .

Frequency and Percent of Overall Physical and
Mental Health of Care Recipient . . . . . . . .

Frequency and Percent of Activities of Daily
Living, Instrumental Activities of Daily Living,
and Health Care Activities Required by Elderly
Mothers . . . . . . . . . . . . . . . . . . . .
Frequency and Percent of Activities of Daily
Living, Instrumental Activities of Daily Living
and Health Care Activities . . . . . . . . . .
Correlation Matrix - Social Assistance . . . .
Item Mean Score of Social Assistance Scale . .

Item Means Positive Beliefs About
Caregiving . . . . . . . . . . . . . . . . . .

Item Means Negative Beliefs About
Caregiving . . . . . . . . . . . . . . . . . .

Correlations Among Study Variables . . . . . .

vi

61

62

64

65

66

67

69

70

7O

 

LIST OF FIGURES

Figure 1 The Person as an Adaptive System . . . . .

Figure 2 Adaptation of the Stress Application
Process 0 O. O O O O O O O O O O O O O O O 0

Figure 3 The Stress Adaptation Process as Related to
Caregiving and Family Support . . . . . . .

Figure 4 The Stress Adaptation Process as Related to
Caregiving and Family Support - Revised
Model . . . . . . . . . . . . . .

vii

INTRODUCTION

Caregiving has been the focus of a significant portion
of the gerontological research in.the past years. It is a
well published fact that the population is aging. According
to the American Association of Retired People (1994), in
1993 there were 32.8 million individuals over the age of
sixty five with 19.5 million who were women. Currently
depending on the source, only about five to six percent live
in institutions and the remainder are living in the
community either independently or receiving assistance from
family members or other sources. Brody (1985) has described
parent care as a normative family process, however it is not
a developmental stage that fits neatly into the life cycle.
Parent care occurs at different times for different
individuals and may present different challenges for the
individual involved.

Family members, specifically daughters, provide a
significant amount of care to the elderly. Women have
historically been the caregivers of society and caring has
been a practice associated almost exclusively with women.
Gilligan (1982) has done extensive research on the
differences between women and men with regard to
relationships. Women are socialized differently from birth
with more of an emphasis on the “relationship” aspects of
life whereas men are more conscious of the rules and issues
of right and wrong. Women seem to be nurtured as caregivers

and this societal emphasis makes it difficult to give up the

2
caregiving role. Gender differences with the caregiving
experience are documented in the literature with women
reporting a more stressful experience than men (Horowitz,
1985; Strawbridge & Wallhagen, 1991). Because of the
socialization by society, mothers and daughters share a
special relationship and have been singled out for study by
numerous authors. The mother-daughter relationship is
described by Barnett, Kibria, Baruch, and Pleck (1991) as
‘...the longest lasting relationship they are ever likely to
have” (p. 29).

While an abundance of literature has been written on
the primary caregiver experience, less has addressed the
influence of family support on the caregiver. Several
studies have supported the concept that perceived
satisfaction with social support lessens the psychological
distress of caregiving (Ballie, Norbeck, & Barnes, 1988;
George & Gwyther, 1986). These studies considered the
effects of all social support and did not specifically study
the effects of family support. Social support in these
studies included both formal such as community services as
well as informal such as friends. Identifying and isolating
specific sources of support may be useful in planning
interventions useful in adapting to the caregiver role.

Limited research is available on the roles of sibling
interaction and perceived support in the caregiving role.
Brody Hoffman, Kleban, and Schoonover (1989), studied

perceptions of caregiving among a group of daughters and

 

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3
local siblings. This study reported, “Caregivers prominent
in the uplifts factor had a strong sense of receiving help
from their families and siblings, tended to have more local
siblings and tended not to experience an overall sense of
strain from hassles? (Brody et al., 1989, p. 536).

Limited research is available on the roles of sibling
interaction and perceived support in the caregiving role.
Brody, Hoffman, Kleban, and Schoonover (1989), studied
perceptions of caregiving among a group of daughters and
local siblings. This study reported, ”Caregivers prominent
in the uplifts factor had a strong sense of receiving help
from their families and siblings, tended to have more local
siblings and tended not to experience an overall sense of
strain from hassles" (Brody et al., 1989, p. 536). Uplift
factors included such things as moral support, someone to
talk to, approval, dependability and understanding from
siblings.

Negative and positive beliefs about caregiving have
been identified in the literature. Negative beliefs have
been identified as caregiver burden, caregiver stress, and
caregiver strain. These beliefs include items such as
inconvenience, confinement, family adjustment, competing
demands on time, feelings of being overwhelmed, physical
strain, and financial strain (Bunting, 1989; Lawton, Kleban,
Moss, Rovine, & Glicksman, 1989; Schoonover, Brody, Hoffman,
Kleban, 1988; Zarit, Reever, & Bach—Peterson, 1980).

Positive beliefs have been identified as gratifications of

4
caregiving such as experiencing moments of warmth, comfort
and pleasure, feeling appreciated, feeling closer to care
recipient, affection, and enjoyment of the relationship
(Lawton et al., 1989; Walker, Shin, & Bird, 1990; Walker,
Shin, Bird, & Jones, 1990; Wood, 1990).

Purpose of the Study

The purpose of the study was to explore and describe
the relationship of family support to positive and negative
beliefs about caregiving among a group of new caregiving
daughters providing care to their aging mothers post
hospitalization.

The rationale for the development of this study was to
increase awareness of the influence of perceived family
support on positive and negative beliefs about caregiving
among a group of adult daughter caregivers. The results of
this study will provide information to health care
professionals that may improve communication and educational
counseling to adult daughters regarding family support in
care for the elderly. The study will be important in
primary care to assist daughters providing care to elderly
mothers to develop strategies that promote successful
transition to the caregiving role. The study was designed
to study the perceptions of family support by the adult
daughter caregiver.

This study is based on a secondary analysis of data
from the family care study by Joanne Pohl (1992) that

focused on the mother-daughter relationship and the adult

5
daughter's commitment to the caregiving role. The Pohl
(1992) sample is a sub-sample of a larger study entitled,
“Caregiver Responses to Managing Elderly Patients at Home”
conducted at Michigan State University and funded by the
National Institute on Aging (R01 A60658406, Given, 1988)
that examined caregiver responses to managing elderly
patients at home. The focus of this study will be on the
positive and negative beliefs about caregiving identified in
the Pohl (1992) study and will investigate the relationship
between perceived family support and positive and negative
beliefs about caregiving.
Statement of Purpose

The purpose of this study was to examine the question:
Among a group of caregiving daughters providing care to
elderly mothers, is there a relationship between the
perception of family support for the caregiving role and
positive and negative beliefs about caregiving?

CONCEPTUAL FRAMEWORK
Introduction

The conceptual framework for this study is presented in this
chapter. The purpose of the conceptual framework is to
provide a systematic structure for describing the concepts
under investigation. In the conceptual framework an
integration of the Roy Adaptation Model (1992) and the
concepts of positive beliefs about caregiving, negative
beliefs about caregiving and family support will be

discussed.

 

 

to

re

6

The chapter is divided into three main sections.
First, the conceptual definitions of positive beliefs about
caregiving, negative beliefs about caregiving, and family
support are presented. Second, an overview of the Roy
Adaptation Model (1991) is described. Third, a discussion
and model of the relationship between the variables and Roy
Adaptation Model (1991) will be provided.

Positive Beliefs About Caregiving

Positive beliefs about caregiving have not been
frequently cited in the literature. In a study about
perceptions of relationship change and caregiver
satisfaction Walker, Shin, and Bird (1990) describe
gratifications of caregiving as experiencing moments of
warmth, comfort and pleasure as well as enjoying being with
and feeling appreciated by the care receiver.

Lawton, Kleban, Moss, Rovine, and Glicksman (1989) also
describe positive aspects of caregiving such as raising
caregiver self-esteem and feeling closer to care recipient.
Wood (1991) described a positive aspect of caregiving as
caregivers receiving a sense of fulfillment in knowing that
they were putting forth their best effort in assisting their
loved one. Walker, Pratt, Shin and Jones (1990) cite
affection, closeness, and enjoyment of the relationship as
strong motivators of intergenerational contact and aid.

Archbold, Stewart, Greenlick, and Harvath (1990) refer
to mutuality as a positive aspect of caregiving. Mutuality

refers to the ability to find gratification and meaning in

 

 

 

it

at

7
the caregiving situation as well as the ability to perceive
the care receiver as reciprocating by virtue of their
existence.

For the purposes of this study, positive beliefs about
caregiving describe positive feelings about the caregiving
situation including feelings of enjoyment, satisfaction,
mutuality, and willingness to care for mother.

Negative Beliefs About Caregiving

There has been an abundance of literature which
documents the negative aspects of caregiving. Negative
aspects of caregiving have been referred to as caregiver
burden, caregiver stress, caregiver distress, or caregiver
demands. Lawton et al. (1989) describe caregiving distress
as poor health, isolation, end-of—one's rope feeling, loss
of control, fatigue, depression and feeling trapped.
Caregiver distress may also consist of infringement of the
life style because of the demands of care, negative family
relations, lack of privacy, restriction on visiting and pre-
emption of space. In a study of geographically distant
children, Schoonover, Brody, Hoffman, and Kleban (1988)
describe negative feeling of caregiving as feeling helpless,
drained, or overwhelmed, and having difficulty in setting
priorities associated with the mother's need for help.

Robinson (1983) described negative beliefs (stressors)
as inconvenience, confinement, family adjustments, changes
in personal plans, competing demands on time, emotional

adjustment, upsetting behavior, the parent seeming to be a

Turnia

 

 

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8
different person, work adjustments, feeling of being
completely overwhelmed, sleep disturbance, physical strain,
and financial strain. Zarit, Reever, and Bach-Peterson
(1980) described the negative impact on caregiving as the
caregiver's lack of time for oneself, the excessive
dependency of the patient on the caregiver, and the
caregiver's fear of further deterioration in the patient's
behavior.

Bunting (1989) describes the negative consequences of
caregiving for the caregivers themselves as including the
emotional stresses of coming to terms with the changing role
and capability of the older person; the restrictions on time
and freedom; the economic burdens, including the loss of
curtailment of employment; and the detrimental effects of
the caregiver's marital, family, and social relationships.

For the purposes of this study, negative beliefs about
caregiving describe negative responses to the caregiving
situation such as feelings of discouragement, entrapment,
and resentment in caring for the aging mother.

Family Social Support

Family social support is a difficult concept to define.
Roy (1991) defines social support as.“Support systems are
persons, groups, or animals that contribute to meeting a
person's interdependence needs. Support systems provide the
same function of giving and receiving love, respect and

value" (p. 388).

9

Kane (1988) follows the systems theory and defines
family social support as “an ongoing pattern of social
relationships between the family and its social environment
that reflects interdependence" (p. 20). Kane makes three
assumptions regarding social support which are as follows:
1) the family is a system; 2) social support is a social
process; and 3) social support is positive and helpful.
Kane does acknowledge that social support may at times be
negative, but this is considered to be an additional
stressor.

Kane describes three factors that are present of social
support is occurring; reciprocity, advice/feedback, and
emotional involvement. Reciprocity refers to the fact that
an individual is involved in a network of mutual obligation.
According to Kane (1988), “Reciprocity is demonstrated by
behaviors in which an individual shares resources with
others and is able to ask for and receive help from others”
(p. 22). Advice/feedback are also factors in social
support. According to Kane (1988), “the family is in the
process of sharing perceptions of itself with others and
likewise or receiving evaluations from others as to how the
family is perceived? (p. 22). Emotional involvement is the
third interactional component and according to Kane (1988),
connotes “the positive emotional bonds between the family

and others such as love, caring, warmth, and compassion"

(p.22).

 

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10

Russell and Cutrona (1984) developed a model for social
support based on the Weiss (1974) model. The following six
items are provisions of social relationships as described by
Weiss: 1) Attachment: Provided by relationships where the
person receives a sense of safety and security; 2) Social
Integration: Provided by a network of relationships where
individuals share interests and concerns; 3) Reassurance of
Worth: Provided by relationships where the person's skills
and abilities are acknowledged; 4) Reliable Alliance:
Provided by relationships where the person can count on
assistance under any circumstances; 5) Guidance: Provided by
relationships with trustworthy and authoritative others who
can provide advice; and 6) Opportunity for Nurturance:
Provided by relationships where the person feels responsible
for the well-being of another (Russell & Cutrona, 1984, p.
12).

There are similarities in the description of social
support that have been provided. Interactional processes
are difficult to measure. For the purposes of this paper,
family support will describe the caregivers perceptions of
the family's willingness to help, spend time with mother,
offer emotional support to the caregiver, and work with the
caregiver as needed.

Conceptual Framework

The Roy Adaptation Model will be used as the conceptual

framework for this study. Roy (1991) described the

individual as an adaptive being comprised of four distinct

 

TanIA

 

11
modes. The modes are as follows: a) the physiologic mode
which is associated with the way a physical being reacts to
stimuli from the environment; b) the self concept mode which
focuses on the psychological and spiritual aspect of the
person; c) the roles mode which focuses on the roles an
individual plays in society; and d) the interdependence mode
which focuses on the relationships the individual is
involved in.

Roy (1991) describes the environment as including the
conditions, circumstances, and influences that surround and
affect the development and behavior of the person. Roy uses
the term stimulus to describe this behavior. The Roy model
addresses three distinct types of stimuli. Focal stimuli
can be described as “the internal or external stimulus most
immediately confronting the person? (p. 7). Contextual
stimuli are:“all other stimuli present in the situation that
contribute to the effects of the focal stimuli? (p. 9).
Contextual stimuli are all the environmental factors that
are present to the person from within or without but are not
the center of the person's attention and/or energy.

Residual stimuli are “environmental factors within or
without the person whose effects in the situation are
unclear” (p. 9).

Adaptive behavior reflects a positive response to
internal and external environmental change while ineffective
behavior reflects a negative response. These responses act

as feedback or further input to the system allowing the

 

“fur-nun

 

12
individual to decide whether to increase or decrease efforts
to cope.

Coping mechanisms are defined as innate or acquired
ways of responding to the changing environment. Roy further
divides the innate and acquired coping mechanisms into two
major subsystems termed as the regulator and cognator
subsystems. The regulator subsystem responds automatically
through neural, chemical and endocrine coping processes.

The second major coping process, the cognator subsystem,
responds through cognitive-emotive channels such as
perceptual/information processing, learning, judgment, and
emotion (p. 14).

Roy describes the goal of nursing as the promotion of
adaptation in each of the four modes thereby contributing to
the person's health, quality of life, and dying with dignity
(p. 20).

See Figure 1 for the Roy Model of the person. Stimuli
(focal, contextual, and residual) affect the person
represented by the four modes. The person's coping
mechanisms respond to the stimuli and produce a response
which is either adaptive or ineffective and acts as feedback
to the system for further evaluation and response.

The model proposed for this study is based on the
stress adaptation process described by Roy. See Figure 2
for the adaptation of the Roy Stress Model used in this
study. The Roy Adaptation model assumes a holistic approach

‘to the person and his/her relationship to stress. Stress is

 

 

 

 

 

 

Ada;

13
Figure l. The Person as an Adaptive System

PERSON

 

DIEFFEC'I'IVE
RESPONSE

Adapted from Roy, C. and Andrews, H. (1991).

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viewed as a general term given to the transaction between
the environmental demands for adaptation and the
individual's response. All the components of the stress
adaptation process are dynamic processes continually
changing over time.

According to Roy (1991), stress is two dimensional in
the process of adaptation. On the input side of the stress
interaction, stressors are focal stimuli, mediated by the
contextual or residual factors, and determine the
individuals adaptation level. Cognitive appraisal is
central in determining which stimuli constitute stress for
each individual. Stress interaction, involves activation of
coping mechanisms which produce adaptive or ineffective
behaviors.

See Figure 3 for the model proposed for this study.

The main stimuli in this model or the focal stimuli is
represented by the mother daughter new caregiving situation
itself. In this model, the “new caregiving experience" will
be assumed to be a stressor. Caregiving has been documented
in the literature to be a stressful event. In this model
family support is a mediating factor which affects the
caregiving situation. Family support is considered to be a
contextual stimuli. As previously discussed, family support
is considered to be generally positive but may have a
negative or additional stressful additive if negative
interactions are present. In the model, stress is a result

of the mother-daughter caregiving experience and family

 

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support is considered the mediating factor which may
increase or decrease the stress. Coping mechanisms
considered in the model are a result of the cognator
subsystem specifically the perception of family support.
The adaptive response in this model is represented by the
positive beliefs about caregiving while the ineffective
response represents the negative beliefs about caregiving.
Analysis for this project will focus on the concepts of
perceived family support and negative and positive beliefs
about caregiving.
REVIEW OF THE LITERATURE
Introduction

In this chapter a review of the literature relevant to
mother-daughter caregiving, positive beliefs about
caregiving, negative beliefs about caregiving and family
support including emotional support is presented. The
review includes a discussion of the research methodologies,
statistical findings, and the strengths and limitations of
the studies.

Daughter-Mother Caregiving

Walker and Pratt (1991) studied mother-daughter aid
patters to determine if aid given by daughters to mothers
can be viewed as part of a continuum of aid rather than as a
dramatic shift in the intergenerational relationship. The
sample of daughters (n=182) consisted of a control group
(n=43) who had self sufficient elderly mothers who were able

to meet daily needs of their own and a comparison group

Tur-

 

18
(n=139) who were considered to be primary caregivers to
their mothers. To be considered for the caregiving group,
mothers were dependent on daughters for at least one of the
following forms of assistance: laundry, transportation, meal
preparation, housekeeping, personal care or financial aid.

Data was gathered through a face-to-face structured
interview in the home for which each daughter received
twenty dollars. In addition, appointments were made for
nine telephone interviews over the next two months to obtain
additional task and activity reports. The instrument used
for the study was an adaptation of an instrument designed
for a previous study developed to measure the division of
household labor in marriage. Eight categories of
instrumental assistance were measured as well as three
categories of psychological aid. Reliabilities were
reported for each category.

The groups of daughters were compared with t-tests. In
all but two of the instrumental aid categories, outdoor
tasks and financial aid, caregiver daughters reported
greater frequencies of instrumental aid than did control
daughters. According to Walker and Pratt (1991), “Clearly
demonstrated, however, is that both control and caregiving
daughters gave significant amounts of aid to their mothers
in every category of aid assessed”? (p. 8). Analysis of
psychological aid, revealed no differences between groups in
the average number of leisure activities over the eleven day

report. Caregiving daughters did report a greater frequency

Tu:- c

 

 

19
of psychological support and contact with their mothers than
did the control daughters. Again Pratt and Walker (1991)
report that both groups gave significant amounts of
psychological aid to mothers in all three categories.
Walker and Pratt concluded that caregiving seems to be a
continuum as well as an extension of earlier
intergenerational assistance.

Strengths of the study included the comparison group in
an attempt to understand the relationship of
intergenerational aid and caring. Limitations of the study
include the cross-sectional design which does not allow
conclusions to be drawn about transition from
intergenerational assistance to caregiving. Non random
sampling does not allow for generationalizations to the
general population.

Horowitz (1985) presented a study of one-hundred thirty
one children identified as the primary caregiver relative to
an older parent and examined how sons differentially perform
and experience the caregiving role as compared to daughters.
Questions considered in this study include the following: 1)
Having taken on the primary caregiving role, do sons and
daughters differ in the type and extent of assistance
provided? 2) Do they differ in their respective perceptions
of the social and emotional consequence of caregiving?

The subjects were recruited from four community based
agencies in New York City which included a daycare center, a

homemaker agency, a local chore program, and a visiting

20
nurse service. Programs were chosen to provide access to
older people exhibiting a range of service needs and service
utilization. Selection process for participation included a
random sample from all four agencies with the older adult
being contacted to supply the name of a primary caregiver
and give permission to contact the caregiver. The next step
involved contacting the relative who consented to
participate which resulted in a usable sample (n=203) of
which 65 percent were adult children, 76 percent who were
daughters and 24 percent who were sons.

Data were collected via an in depth, structured
interview with the caregiving relative that lasted
approximately two hours. The major dependent variables in
the study were caregiving involvement and caregiving
consequences.

Caregiving involvement was defined as the objective
level of time and task commitment and operationalized by a
twelve item scale. Scale items included the frequency of
face to face and telephone encounters and the extent of help
given in each of the following: transportation, household
help, shopping, meal preparation, personal care, health
care, financial management, emotional support, and financial
assistance. Internal consistency showed Alpha CoefficientB
0.82.

Caregiving consequences refer to the relatives'
perception of how caregiving has affected their social,

emotional and familial lives. Twenty nine items were

21
included in the measure. The alpha co-efficient was .88 for
the scale.

In terms of caregiving involvement, “with the exception
of health care, daughters were significantly more likely to
help their parents with all services calling for “hands on"
assistance such as transportation, household chores, meal
preparation, and personal care" (Horowitz, 1985 p. 614).
Scores on the caregiver involvement scales indicated sons
spent considerable less time in care of elderly parent than
did daughters. When sons did take on the role of primary
caregiver, they tended to have limited time and task
commitment then did daughters.

In terms of caregiving consequences sons tended to be
less negatively affected than daughters in the following
areas: 1) less likely to believe they had to give up
anything (32% sons, 60% daughters); 2) believe they
neglected family responsibilities (9% sons, 31% daughters);
3) time for leisure negatively affected (22% sons, 56%
daughters); 4) emotional state had changed for the worse
(31% sons, 59% daughters); 5) plans for the future had been
negatively affected (16% sons, 43% daughters). Horowitz
reported the experience of caregiving for an older parent
remained one of considerably greater strain for an adult
daughter than for an adult son.

Strengths of the project included the attempt to obtain
a random sample. Instruments used for the study were

reliable. A limitation of the study was that the population

Turn:

 

22
was identified by participation in a service organization
which is not true of many caregiving situations and limits
generalization to the general population.

The Pohl (1992) study on which this study is based was
a quantitative/qualitative study that looked at the
stability of the mother-daughter relationship during the
transition to caregiving. The specific aim of the study was
to examine longitudinally the relationship between mother-
daughter attachment, mother-daughter conflict, mother's
level of disability and an adult daughters commitment to
caregiving measured at two points of time. The sample
consisted of ninety eight caregiving daughters. Measurement
tools used in the study included: 1) Thompson and Walker's
Attachment Scale (1984) which was a nine item scale used to
measure mother—daughter attachment (alpha=0.85); and 2) Boyd
(1987) Conflict Scale which was an eight item scale used to
measure conflict (alpha=0.84). (Additional Scales will be
described in positive and negative beliefs sections
respectively.)

The Pohl (1992) study was a longitudinal study which
took measurements within the first three months of
caregiving and then again three months later. Data were
obtained by phone interview and follow up questionnaires.

The study hypothesized that conflict and attachment
‘would remain stable over time even in the face of taking on
caregiving responsibilities. This hypothesis was supported

at both wave I and wave II with stable attachment and

23
conflict scores. According to Pohl, mother-daughter
attachment scores were reported above the middle range of
the scale indicating that daughters perceived themselves as
attached but not excessively so.
Summary

Caregiving by daughters for elderly mothers is a unique
experience for women. Adult daughters experience more
stress when compared with sons in caregiving situations
(Horowitz, 1985). Caregiving by daughters can be viewed as
an extension of the continuum of care by adult daughters for
mothers (Walker & Pratt, 1991). The mother-daughter
relationship remains stable even in the context of taking on
the new caregiving role (Pohl, 1992).

Positive Beliefs About Caregiving

Walker, Shin and Bird (1990) conducted a study that
considered perceived changes in the quality of the mother-
daughter relationship in the context of caregiving. It was
predicted that the actual experience of caregiving would be
related to the perception of a relationship change with some
daughters experiencing a positive change while others
perceived no change or a negative change or no impact.
Perceptions among daughters of positive relationship changes
were hypothesized to be associated with awareness of the
benefits derived from the caregiving role, and perceptions
of negative relationship associated with awareness of the

cost of caregiving.

 

 

Tutor.

24

The sample consisted of one hundred thirty three
mother-adult daughter pairs who volunteered for the study.
All the pairs were white with the exception of one pair who
identified themselves as Native Americans. Data was
collected by means of two interviews about two months apart
with each member of the pair being interviewed separately.
Daughters who had longer interviews than mothers were paid
$20 for participating.

A total of six measurement tools were used in this
study. Satisfaction with caregiving was measured using a
domain satisfaction scale developed and validated by
Campbell, Converse, and Rodgers (1976). The scale consisted
of ten semantic differential pairs with a likert type scale
of one through seven. Relationship quality was measured by
a seventeen item likert type intimacy scale developed by
Walker and Thompson (1983). Specific construct validity was
not given for this scale. Perceived caregiving/care
receiving of the relationship was developed for this study
and consisted of a one item question with a open ended
follow-up of why. Degree of bother and difficulty providing
care and quality of care provided were single item questions
used to measure the construct. No information on source of
the questions or reliability was given. Care needed was
assessed by respondents responses within eight categories of
instrumental aide and then a mean level of the mother's
dependence was calculated. Scores were also evaluated to

assess the number of areas in which care was provided.

 

25

Half of the daughters (50.4%) perceived that the
caregiving situation had a positive impact on their
relationships with their mothers while 44.2% perceived no
change and 5.4% perceived a negative impact on the
relationship. The positive impact of caregiving was related
to the greater amount of time spent with mothers, more
understanding in the relationship, and the act of providing
care demonstrates care. The negative impact of caregiving
reported by daughters included feelings of resentment for
having to do it, feeling obligated, and the demands placed
on the daughter by the mother. Analyses of variance with
daughter's perceived effect on the relationship as the
grouping variable and the daughters' caregiving satisfaction
as dependent variables were done. “Perceptions of
relationship change were related to overall satisfaction
with caregiving in that daughters who perceived negative
change had more negative evaluations of caregiving than
daughters who reported either positive or no change”
(Walker, 1990, p. 149). Daughters who reported that their
relationships worsened as a result of caregiving reported
significantly lower intimacy scores in comparison with those
who reported no change or positive effects. Intimacy was
significantly correlated with perceptions of relationship
quality and perceptions of relationship closeness.

Limitations of this study include the question of the
reliability and validity of the measurements used as no

specific evidence was given. Three of the scales were

 

'urn'o

 

 

26
limited to single item questions which could limit the
ability to obtain information. The sample was also a
limitation of the study as it consisted of individuals who
volunteered for the study which may have an effect on the
positive results obtained as well as ability to generalize
to the general public. In this study, only 29% of the
mothers required personal care which may have had an effect
on the study results. In addition, none of the care
receivers suffered from dementia which may also impact the
findings.

Wood (1991) reported on a qualitative research project
whose purpose was to describe the experiences of caregivers
who were providing care to an individual who had been
recently discharged from a physical rehabilitation program.
The study consisted of ten subjects who had been discharged
within the past two months from a rehabilitation program in
the southeastern United States. Of the ten subjects, three
were wives, two were daughters, one each of granddaughter,
daughter in law, mother, son and husband. The method of
data collection was a semi-structured interview conducted in
the subject's residence. Data was recorded on audiotape and
later analyzed by identifying themes within the transcribed
tapes and coding according to categories established during
data analysis. Themes identified by the researchers
included attitudes toward caregiving, changes brought on by

caregiving, experience and assistance with caregiving,

 

Tur.

 

 

 

27
information on how the caregivers cared for themselves as
well as positive and negative experiences of caregiving.

Positive themes expressed by the caregivers included a
sense of fulfillment in knowing they were putting forth
their best effort in assisting loved ones as well as
developing an appreciation for life in general.

Strengths of a qualitative study include the ability to
identify themes important to the individual being
interviewed. Limitations of the study include the size as
well as the non random sample which limit the generalization
to the general population.

Archbold, Stewart, Greenlick, and Harvath (1990)
studied mutuality and preparedness as predictors of
caregiver role strain. Mutuality refers to the caregiver's
ability to find gratification in the relationship and
meaning in the caregiving situation and the caregiver's
ability to perceive the care receiver as reciprocating by
their existence. Preparedness refers to the readiness to
take on the caregiving role.

The sample for the study consisted of seventy eight
dyads who participated in six week and nine month post
hospitalization interviews. All care receivers were sixty
five years or older and belonged to a large HMO in the
pacific Northwest. Care receivers had to require assistance
in one or more of the following: a) medications or
injections; b) bathing, shampooing, or dressing; c) walking,

shopping, or errands; or d) household chores such as

 

’A ‘l—o‘o .

 

28
cleaning. Caregivers had to be over eighteen and speak
English. Caregivers consisted of wives (19%), husbands
(26%), daughters (21%), sons (6%), daughter's in law (13%),
other relatives (10%), or friends (5%).

Measures used for the study included the “Family
Caregiving Inventory? (Archbold & Steward, 1986) which
consist of separate structured interviews for caregivers and
care recipients lasting two hours and one hour respectively.
Measures of seven predictor variables and nine measures of
caregiver role strain are included in the inventory. Alpha
coefficients were reported at greater than 0.70 for nine out
of ten predictors and outcomes reported in the study.

Multiple regressions were used to test the hypothesis.
After controlling for five variables commonly found to be
predictors of caregiver role strain, mutuality and
preparedness were associated with lower levels of caregiver
strain except in areas associated with strain from economic
burden, worry, and lack of resources. Strain from direct
care, increased tension, and global strain appeared to be
affected by higher levels of mutuality and preparedness.

Limitations of the study included the large number of
regression analysis and the relatively small sample size as
well as the inability to generalize to the general
population because of convenience sampling.

The Pohl (1992) study which was previously described
looked at affective commitment to caregiving which included

positive and negative beliefs about caregiving. Positive

 

Tucc

 

 

 

 

29
beliefs were measures by the Self-Esteem Scale (Given,
Given, Stommel, Collins, King, & Franklin, 1992) which was a
seven item scale which described positive beliefs about
caregiving. (See methods section for detailed instrument
description.)

The study hypothesized that mother-daughter attachment
would directly predict positive beliefs about caregiving.
This hypothesis was supported at Wave I but results were
questionable at Wave II. There was no significant change in
positive beliefs between Wave I and Wave II. According to
Pohl, daughters reported moderately high positive beliefs
about caregiving.

Qualitative findings supported the quantitative
results. Positive beliefs about caregiving included items
such as feeling good about caring for mother, or finding it
rewarding or fun.

A major strength of this study was the qualitative
portion which supported the quantitative data.

Summary

Positive beliefs are associated with the caregiving
experience. Beliefs include a feeling of a positive impact
on the relationship (Walker, Shin, & Bird, 1990), a sense of
fulfillment, and an appreciation for life in general (Pohl,
1992; Wood, 1990). Mutuality and preparedness may mediate
some of the burden associated with the caregiving role

(Archbold et al., 1990).

30
Negative Beliefs About Caregiving

Walker, Martin, and Jones (1992) conducted a study on
benefits and costs of caregiving and receiving for mothers
and daughters. The sample consisted of one hundred forty
one primarily white (two Native Americans) mother-daughter
pairs from rural and urban areas of western Oregon who
volunteered for a longitudinal study on mother-daughter
relationships. Daughters were included in the study if they
provided more than half of transportation, housekeeping,
meal preparation, laundry, personal care and/or financial
support and had a mother who was cognitively intact, over
sixty five and living within forty five miles of the
daughter.

Data were collected in face to face interviews
primarily in homes. Participants were paid for
participation. Demographic data, amount of care, and
situational data were collected during the initial interview
and costs and benefits were assessed during a second
interview approximately two months after the first
interview.

Measurement tools used for the interview included the
Walker and Thompson Intimacy Scale (1983), information on
ADL and IADL assistance, and perception of health. Outcome
factors were developed for the study which included Factor
1: Insufficient time (alpha=.86); Factor 2: Frustration
(alpha=.82); and Factor 3: Anxiety (alpha=.61). Block

regression analysis was done to analyze data with first

31
block consisting mainly of demographic variables to be
reflective of background factors prior to the start of
caregiving and second block factors reflective of
situational factors that affected the caregiving situation.

The results of the study confirmed the cost of the
caregiving experience for the caregiving daughters. The
data showed that the performance of caregiving tasks led to
feelings of frustration while anxiety reflected concern over
one's ability to give care. Caregiver duration was an
important predictor of anxiety as daughters with shorter
caregiving history showed more anxiety. Costs reflecting
the impact of caregiving on the caregiver were confirmed.
Married daughters reported greater time costs than did
single or divorced daughters. Shared living quarters and
mother's health were also predictors of increased time costs
for the daughters.

Strengths of the study included the statistical
procedures used which entered all variables at the same
stage in the regression. The size of the sample was good
for the amount of information gathered. Limitations of the
study included the sample which because of the voluntary
participation, limited sampling area, and the lack of
representation of ethnic groups limit the ability to
generalize findings. Findings from the anxiety outcome
should be viewed with caution as the alpha rating on the

variable was low.

32

Sheehan and Nuttall (1988) examined the contributions
of interpersonal conflict, affection, caregiver
satisfaction, distress concerning dependency as well as
objective demands of caregiving in predicting caregiver
strain and negative emotion. The sample consisted of ninety
eight family caregivers providing care to frail or impaired
elderly relatives. The majority of the sample was adult
children (n=75) with females making up the majority (83.6%)
of the sample.

Data were collected by an initial self-administered
questionnaire followed by a four month follow up
questionnaire. Personal strain was measured using a six
item scale which assessed the degree to which the caregiver
felt his/her responsibilities were affecting job
performance, financial matters, social or recreational
activities, and relationships with others. Negative emotion
(adapted from Circirelli, 1981) assessed the degree to which
caregivers experienced the following emotions: frustrations,
impatience, depression, helplessness, resentfulness,
isolation, emotional exhaustion, nervousness, anger, and
feelings of incompetence. The Hopkins Symptoms checklist
(Derogatis, Lipman, Rickels, Uhlenhuth, and Covi, 1974) was
used to create subscales for depression, anxiety, and
somatization.

The results of the study supported the concepts that
subjective factors are important in explaining the negative

consequences of caregiving. Negative emotions were found to

33
be associated with depression, anxiety and somatization.
Conflict was also noted to be strongly associated with
negative affect.

Limitations of the study include the fact that
psychometric data was not presented to support the
reliability of the instruments used. The sample was also
non-random which may limit the generalization of findings.

Stull, Kosloski, and Kircher (1994) studied the burden
variable as a predictor and outcome to determine if it is a
legitimate variable for caregiver research. Some previous
literature has suggested that burden and well being may be
opposite sides of the same coin and that measures of well
being may be used to compare caregivers to non-caregivers.

Data was obtained from the Eldercare Project conducted
in northeast Ohio. Subjects were self referred in response
to advertisements, newspaper stories and mass mailings from
the local congressional representative. Screening
interviews were done with respondents to determine
eligibility. Longer structured interviews were then
scheduled with the one hundred eighty nine relatives who
identified themselves as primary caregivers.

Caregivers were predominantly female (86%) with the
largest group composed of daughters (57%). Two thirds of
the elders were women averaging eighty two years old.
Approximately half have some type of cognitive impairment,

and half need help with six or more (out of thirteen)

34
ADL/IADL tasks with twenty five percent needing help with
eight or more.

Measures for the study were divided into four main
categories. Antecedents were described as features of the
caregiving situation that are likely to affect caregiver
burden or well being. This measure was tapped by a twenty
four item scale which included ADL's/IADL's and tasks.
Generic well being was measured by assessing caregiver
perception of health with a single item question (Alpha
Coefficient=0.86), social activities (Alpha
Coefficient=0.63), and financial household income which was
based on five thousand dollar increments (Alpha
Coefficient=0.59). Measures of burden were measured using
content areas either explicitly or implicitly implied in
previous research. Areas included physical, financial,
social/time and interpersonal. Some questions were taken
from previous scales and some questions were developed for
this project. Three measures of burden, physical (Alpha
Coefficient=0.81), social (Alpha Coefficient=0.80), and
financial (Alpha Coefficient=0.58), were used in this study.
Outcomes that were used as measures in this study include
use of community assistive services, utilization of day
care, and finally thoughts of nursing home placement.

Correlations and regressions were done to analyze data.
Findings suggested that burden is a unique part of the
caregiving experience. Burden across all three measures was

shown to have larger correlations with the antecedent

.35
variables previously described than with the generic
variables of well being. Caregiver burden measures were
also better predictors of outcomes than were the measures of
well being.

The main strength of this study is the ability to
compare caregivers with noncaregivers. Limitations include
the low alpha coefficients on some of the variables
particularly the well being variables which may influence
the results.

Stommel, Given, and Given (1990) studied depression as
an overriding variable in the caregiver burden variable.
This study viewed burden as subjective perception of
reactions to the caregiving experience. Predictors of
caregiver burden fell into three categories: a)
characteristics of the patient; b) characteristics of the
caregiving situation; and c) characteristics of the
caregiver.

The sample for this study involved three hundred seven
caregivers who were part of a longitudinal study involving
patient dyads from one hundred forty five community agencies
in the Midwest who identified family members who cared for
dependent elderly relatives in their homes. The primary
caregivers were interviewed in their homes and were the
exclusive source of information for the dyad.

Measures used for the study included the following
instruments. A new tool was developed that consisted of

twenty seven items which formed five subscales measuring

 

36
perceived caregiver burdens including impact on finances,
impact on health, impact on schedule, feelings of being
abandoned by family and sense of entrapment. The Alpha
Coefficients ranged from 0.72 to 0.87 in the sample. The
scale developed was tested on a pilot sample of ninety nine,
redesigned to include seventy seven items which were
administered to the present sample with the final measure
consisting of the twenty seven items described above.

Involvement in patient care was measured by asking
caregivers if care recipients were dependent in any of
twenty seven areas which included ADL's, IADL's as well as
selected medical tasks. Frequency of task was also assessed
using a scale which ranged from no involvement to several
times a day.

Informal support was measured by assessing assistance
and relief provided by others to the caregiver and total
number of persons available for help. Formal
support/service utilization was assessed by measuring the
following: a) number of visits to a physician/ER during the
three months prior to interview; b) all instances of
community service use during the three month period prior to
the interview; and c) number of days the care recipient
spent in a hospital, nursing home or rehabilitation center.

Financial situation was assessed by gathering data on
out-of—pocket expenditures during the six month period prior
to the interview and included items such as recipients

medication, assistive devices and formal services.

 

37

Patient characteristics were measured by health
indicators of patient physical and mental health. Cognitive
behavior was measured by a six item four point likert type
scale developed by Given and Given (1989) which was
confirmed by independent samples of Alzheimer's patients.

Caregiver depression was measured using the Center for
Epidemiologic Studies Depression Scale (CES—D) (Radloff,
1977) which has been widely used especially in studies
focusing on depression in non psychiatric populations. The
Alpha Coefficient was 0.89 for this sample.

Statistical procedures used in the study were bivariate
correlations between the burden variables and the
independent variables described previously. High
correlations were consistently found between the burden
variables and the CES-Depression Scale. Hierarchical
multiple regression were carried out to assess the relative
impact of depression and the process variables affected
different dimensions of burden. The sense of entrapment
subscale (negative beliefs) used in this study appeared to
be affected by many of the process variables although the
connection was weak. The process variable “others involved
in patient care” appeared consistently to reduce the
caregiver sense of burden in feelings of abandonment, impact
on schedule, and sense of entrapment burden scales.

Overall, this was a well designed study. Measures used
appeared to be statistically reliable. The study looked at

caregiver burden from a variety of views.

 

38

Limitations include the non random sampling which limit
the ability to generalize to the general population.
Information was obtained only from the view of the caregiver
which may influence results.

Barnes, Given, and Given (1992) studied caregivers of
the elderly including spouses of adult children. This study
consisted of two hundred and six primary caregivers who were
participants in a larger longitudinal study of three hundred
and seven family members described previously. The study
looked at four distinct groups to determine differences in
caregiving. Groups consisted of a) spouse caregivers who
have children (n=114); b) spouse caregivers who have no
children (n=13); c) adult child caregivers who have siblings
(n=55); and d) adult children caregivers who have no
siblings (n=24). Adult children caregivers were mainly
daughters (n=70, 89%). Community public health and home
agencies recruited caregivers by distributing a single page
description of the study with a self-addressed stamped
postcard used for recruitment of subjects. Criteria for
inclusion in the study included the care recipient had to be
over sixty four, be dependent in two or more self care
activities and the family member had to be acknowledged as
the primary caregiver. Trained interviewers using a written
script conducted phone interviews with the caregivers.

Twelve measures were used in this study including six
measures assessing caregivers perception of burden as

follows: a) financial impact of caring (Alpha

 

39
Coefficient=.72); b) impact of caring on caregivers health
(Alpha Coefficient=.85); c) impact of caring on schedule
(Alpha Coefficient=.81); d) feelings of family abandonment
(Alpha Coefficient=.87); e) role responsibility scale (Alpha
Coefficient=.80); and f) negative reaction to caregiving
(Alpha Coefficient=.78). Measurements of caregiving
involvement including: a) ADL (Alpha Coefficient=.90); b)
IADL (Alpha Coefficient=.78); c) affective social support
(Alpha Coefficient=.88); d) mental health status including
positive well being scale (Alpha Coefficient=.92); e) Center
for Epidemiologic Studies Depression Scale (Alpha
Coefficient=.88); and f) use of community services were
measured.

A repeated measure of analysis of variance with the
various groups of independent variables was conducted for
each of the twelve dependent measures.

Child caregivers reported greater feelings of
abandonment when compared to other groups with child
caregivers with siblings reporting the greatest feelings of
abandonment than those without siblings. Child caregivers
with siblings also reported a greater negative reaction to
caregiving than those without siblings. Caregivers as a
group reported negative impact on health, expressed
receiving less affective support, and all expressed feelings
of abandonment over time.

This was a well designed study with multiple measures

of the impact of burden. Limitations include the non random

 

40
sample with the inability to generalize to the general
population.

The Pohl (1992) study which was previously described
also studied negative beliefs as part of the affective
commitment to caregiving. Negative beliefs were measured on
a seven item “sense of entrapment” developed by Stommel,
Given, and Given (1990). (See methods section for complete
scale description.)

The hypothesis for this study was that mother-daughter
conflict would predict negative beliefs about caregiving.
This finding was supported at both Wave I and Wave II of the
study. Daughters in this study express moderate negative
beliefs about caregiving. Negative beliefs were also
positively correlated to “remains in care" as an outcome.

The qualitative portion of the study confirmed the
negative aspects of caregiving by such statements as feeling
study with the job; resentment toward family members for not
helping; and lack of freedom and worry which were expressed
by the caregiving daughters.

Summary

Negative beliefs are widely discussed in the
literature. Burden is a legitimate variable in the
caregiving experience. Negative beliefs associated with
caregiving include feelings of frustration and anxiety
related to the caregiving situation. In addition, there are
high costs of time associated with caregiving (Walker et

al., 1992). Feelings of depression and abandonment

41
accompany the role (Barnes et al., 1992; Stommel et al.,
1990).
Family Support

In addressing the family social support literature,
very little information can be found that addresses social
support from strict family support view and does not include
all sources of support. Brody, Hoffman, Kleban, and
Schoonover (1989) studied caregiving daughters and local
siblings to examine perceptions of caregiving, strains
associated with caregiving and the interaction among
siblings relating to caregiving.

The sample consisted of seventy-one families in which
the daughter caregiver had a local sibling. The data
obtained for the study was obtained through structured
interview with the caregiving daughters and a local sibling.
Fifty-eight percent of the siblings were females and 42
percent males. Subjects were recruited from a previous
study on filial caregiving as well as new subjects who were
recruited to increase the sample size.

There were a total of five instruments used for this
study including two new instruments which were developed to
examine the problematic and rewarding aspects of the parent
care situation. These included Intersibling Parent Care
Hassles consisting of 25 negative interactions pertaining to
caregiving that may occur and a list of 12 Intersibling
Parent Care Uplifts. Items were also developed to evaluate

family interactions including satisfaction of the

 

42
relationship with mother and the closeness of current
sibling and family relationships.

Groups were analyzed separately, caregiver, sister,
brother, by using one way analysis of variance. Hassles and
uplifts were analyzed by frequency tests; critical ratio,
factor analysis and regression models.

Caregivers exceed both groups of their siblings in
perceived shortcomings in the way their siblings were
meeting parent care responsibilities. In reporting the
results, Brody et al. (1989) state, “The importance to
primary caregivers of socioemotional support is amply
apparent. They were candid in expressing resentment that
their siblings were doing less parent care. They also were
the group most distressed by siblings failure to give them
emotional support and by more active negative behaviors such
as being critical of their efforts. Conversely, the
caregivers felt rewarded when siblings did give emotional
support and understood their efforts for the parents” (p.
537) .

Gender differences in the caregiving sisters were also
reported in the caregiving siblings with the sisters
expressing more discomfort over the role of the secondary
caregiver, feeling guilty about not being able to do enough.
The sisters did appreciate when their efforts were
recognized.

Brothers were the group least affected by the

caregiving situation. They reported providing the least

.‘ ‘fia

 

 

43
instrumental and emotional help and having their own
emotional and physical health least affected. The brothers
reported the least intersibling hassles.

Overall, this was a very comprehensive study which made
an attempt to study the relationship of family in the
caregiving situation. Strengths of the study included a
large sample size and very comprehensive information
obtained from the participants. Data was subjected to
vigorous statistical analysis. A limitation of the study
was the lack of reliability information on the instruments
that were used. Little information was included on the new
instruments developed specifically for this study. The
sample used in the study was non random which limits its
ability to be generalized to the general population.

Zarit, Reever, and Bach-Peterson (1980) first
introduced the concept of providing support to caregivers as
a critical step in the community care of the elderly with
dementia. The study examined how caregivers are affected by
care of a dementia patient in the home as well as the
effects of social factors such as formal and informal
support to the care receivers.

The sample of this study consisted of 29 elderly
Idementia patients and their 29 primary caregivers. Primary
caregivers consisted of 25 females and 4 males with 18 being
spouses and 11 daughters. Subjects were recruited from a
:research and training center which offered counseling and

memory training to older persons.

44

This was a descriptive study and data was gathered by
interviews which took place in the subject's homes and
lasted about one and one—half hours. Several tools were
used to gather data about burden and caregivers were also
asked about the frequency of visits of other family members
to the dementia patient and if any social or health services
were being provided.

In the findings, the frequency of family visits was
significantly related to the level of burden indicating that
older persons receiving more visits from children,
grandchildren, and siblings had caregivers who reported less
burden.

Limitations of the study included the small non random
sample. Information was not elicited on what assistance the
visitors offered or the quality of the visits which may
affect the degree of relief the caregiver receives.

George and Gwyther (1986) studied caregiver well-being
by examining the impact of caregiving on four generic
categories of well-being which included physical health,
:mental health, social participation and financial resources.
'rhe sample of the study (n=510) consisted of family
caregivers from the mailing list of Duke University Family
Support program and represented an 89% return of the
questionnaire instruments. The sample consisted of spouses,

adult children and friends and was composed of 71 percent

women .

4S

Eligibility criteria for inclusion in the sample
required only that the caregiver by providing some level of
care to a memory-impaired adult. Care ranged from living
with the individual to providing care to an
institutionalized older adult. This study compared the
results of the caregivers with a comparable group of
community members.

Social participation was measured using both objective
and subjective indicators. Each objective measure was
accompanied by a subjective assessment of the caregivers
satisfaction with the frequency and quality of
social/recreational activity. Perceived need for social
support was measured by a single item question. Fifty-nine
percent of the sample expressed the need for more support
while 41 percent indicated adequate social support. Groups
were compared by t-tests on the basis of need for social
support. Results indicated that.“those caregivers who do
not need more social support report higher well-being than
'those who desire more assistance from their friends and kin”
(p. 258).

Strengths of this study included the size of the sample
and the high return rate of questionnaires. Limitations of
tniis study include the use of a single question to measure
need for social support. Another limiting factor may be the
vaide variety of care situations represented in the sample as

previously described. Non random sampling and the use of

46

one geographic area limit the ability to predict results in

other groups.

Ballie, Norbeck, and Barnes (1988) investigated the
effects of perceived caregiver stress and social support on
the psychological distress of family caregivers of the
elderly. The study proposed the following three hypothesis:
1. Perceived stress of caregiving will be positively

related to psychological distress (partially

supported).

2. Satisfaction with social support will be negatively
related to psychological distress (supported).

3. Social support will have a buffering effect on the
relationship between perceived caregiver stress and
psychological distress (not supported).

The sample for the study was 87 caregivers recruited
and tested an initial meeting of educational groups
sponsored by a county health department. The group included
spouses (18.4%), adult child (48.3%), other relative
(25.3%), and friends (8.0%).

The study was a descriptive study that used self-report
questionnaires that were completed in one sitting and
required 30 to 45 minutes to complete. Two of the scales
used in this study were designed specifically for this study
and pretested in a pilot test. The Perceived Stress Scale
consisted of 16 items and had an Alpha Coefficient of 0.90.
Irhe Satisfaction with Social Support Scale consisted of 8

items and had an Alpha Coefficient of 0.84. Psychological

47
distress was measured by a “Profile of Mood States" by
McNair, Lorr, and Droppleman and for this study had a 0.89
Alpha Coefficient.

This study used correlations and multiple regressions
to study the variables. The ability of perceived stress and
satisfaction with social support to predict psychological
distress and depression were initially supported but when
more specific caregiver demands were included in the
regression, the perceived stress could not be supported.
The role of social support in predicting psychological
distress was supported but no evidence could be found to
support a buffering effect of social support.

Strengths of this study include the statistical methods
that were used to test the hypotheses. Weakness of this
study include the introduction of two new scales which the
researcher attempted to overcome by the use of pilot
studies. The sample was also very limited in size and non
random.

Strawbridge and Wallhagen (1991) looked at conflict
among family members and its effect on the caregiving role.
Conflict was measured on a social support scale which was
designed to measure the negative aspects of social support.
The aims of the study were to quantify the extent of family
conflict among adult children caregivers and to analyze its
impact on caregiver perceived burden and mental health when

compared to other variables.

48

The sample for the study was one hundred adult
caregivers caring for frail parents or in-laws recruited
from eight organizational sites including adult day health
centers, home health agencies, and informational and
referral agencies in Northwestern Washington and the San
Francisco Bay area. The sample was 83 percent female with
73 percent of the sample considered to be the primary
caregiver.

The study was a descriptive study which used a
structured interview technique which took place in the
subjects' home or place of employment and took approximately
one hour to complete. Structured interviews were used to
measure family conflict, perceived burden, caregiver tasks,
caregiver mental health, relationship quality with parent,
care preferred for self, and income.

Chi Square and t-tests (2 tailed) were first used to
compare the differences between caregivers experiencing
conflict and those not experiencing conflict. Path Analysis
was then used to analyze causal paths and compare other
variables.

Fifty-eight of the caregivers reported a family member
as somewhat or very upsetting on the social support scale.
Of these, eighteen on further investigation indicated the
;problem to be relatively minor leaving forty caregivers as
'experiencing family conflict. The three main causes of
ICODfliCt included the relative not providing sufficient help

:for the care receiver (60%), criticizing what the caregiver

49
was doing (12.5%), or insisting the care recipient be
institutionalized (10%). In 80 percent of the cases, the
conflict had been recent. “Family conflict had a
significant impact on caregiver perceived burden and mental
health, results that remained even when relationship quality
with the parent, caregiver tasks, caregiver income, gender,
and age were taken into account? (p. 775).

Strengths of the study include the wider geographic
area and variety of sources for subjects. Statistical
analysis were strong utilizing path analysis. Limitations
of the study include the subjects which were predominantly
from middle and upper socioeconomic groups. Generalization
to the general public should be made with caution.

Clipp and George (1990) studied social support by
analyzing dimensions which included an objective measure of
instrumental assistance received and a subjective measure of
the caregiver's perceived adequacy of social support
received from family and friends and how the measures
changed over time.

The population in the study was from the Duke
University Family Support Program which was described in
Gwyther and George (1986). This study compares data
obtained in phase two of the study and consists of the 510
subjects from phase one to the 376 who returned
questionnaires in phase two of the study which took place on

year after the initial study.

50

The instrumental assistance scale for this study is a
multi-item scale on which respondents were asked to rate the
following types of assistance from (0) “never" to (4)
“regularly". Specific indicators for the types of
assistance include help when sick, help with shopping or
running errands, help with money or bills, help with
household repairs, help with housework, financial or
business advice, companionship, advice about problems,
transportation, and help with meals. The mean score for
instrumental support at time one and time two were 15.92 and
19.5 with higher scores indicating more support. The
increase suggests caregivers receive more help over time
although absolute levels of assistance remain low.

The instrumental questions were followed by a
subjective question indicating if the caregiver perceives
the need for more social support. During the one year time
interval, the perceived need for social support increased
from 57 to 62 percent. No correlation was found between the
:measures of objective and subjective social support.

Strengths of the study included the relatively large
sample size at both Phase One and Phase Two. Limitations of
‘the study include the short interval between measures
.indicating an ability to observe only short term changes.
'Ehe authors also identified the need to measure social
support in greater than a two dimensional scale as well as a
method to measure perceived adequacy with greater than a one

question measure. As previously discussed, the limitations

51
of the population due to demographics may have affected the
outcome of the study.
Summary

Very little information can be found in the literature
that addresses social support from a strict family point of
view. Brody, Hoffman, Kleban, and Schoonover (1989) study,
did point out the need for increased socioemotional support
by family members to caregiving daughters.

Social support did seem to have a positive impact on
the caregiving situation with caregivers reporting less
burden associated with increased visits (Zarit, Reever, &
Bach-Peterson, 1980), increased instrumental support over
time, (Clipp & George, 1990), satisfaction with social
support being related to less psychological distress
(Ballie, Norbeck, & Barnes, 1988).

It is apparent from the literature review that
daughters have a unique perspective on caregiving. Negative
and positive feelings are both present in the caregiving
experience. Social support may help to alleviate some of
the burdens associated with caregiving. The purpose of this
study is to look specifically at family support for a
(correlation with negative and positive feelings about
caregiving in hopes of adding to the body of knowledge about

'the caregiving experience.

52
METHODOLOGY
Overview

In this research study, the perception of family
support is explored in relationship to positive and negative
feelings about caregiving among a group of daughters caring
for their elderly mothers. The purpose of this chapter is
to explain the research methodologies and design. A
description of the variables, the operational definitions,
the study sample, the data collection methods, analysis
plan, and procedures used for the protection of human
subjects is presented.

Basic design

The basic design of this study is a descriptive
correlational study of the perception of family support and
positive and negative feelings about caregiving among a
group of daughters caring for their elderly mothers post
hospitalization. The design is non-experimental.

Operational Definitions

EQSiIi1a_isalinga_nhQnL_Cazegiying describe positive
adaptation to the caregiving situation including feelings of
enjoyment, satisfaction, and willingness to care for mother.
The operational definition is the mean score on the self
esteem scale items number 4, 8, 9, 13, 17, 26, and 32 from
the caregiving inventory located in Appendix A taken from
the Caregiver Reaction Assessment tool (Given, Given,

Stommel, Collins, King, & Franklin, 1992).

S3

Negatixe_beliefs_abgut_caresixing describe negative
ineffective responses to the caregiving situation such as
feelings of discouragement, entrapment, and resentment in
caring for mother. The operational definition is the mean
score on the sense of entrapment sub-scale consisting of
item numbers 6, 21, 27, 30, 33, 36, and 39 from the
caregiver inventory located in Appendix A taken from the
Caregiver Burden Inventory (Stommel, Given, & Given, 1990).

Eam11y_§uppgrt describes the caregiver's perception of
the family's willingness to help, spend time with mother,
offer emotional support to the caregiver, and work with the
caregiver as needed. The operational definition of family
support is the mean score on items A through H on the Social
Assistance Scale found in Appendix A developed by King and
Barnes (1990). Alpha Coefficient correlation will be
performed to confirm the reliability of the scale.

Selection of Subjects

The sample for this study came from a large study
conducted at Michigan State University (MSU) entitled,
“Caregiver Responses to Managing Elderly Patients at Home"
rand.funded by the National Institute on Aging (R01 AG06584-
06, Given, 1988). The study consisted of 1,038 first time
fandJy'caregivers from 27 hospitals and vising nurse
associations in Michigan. The agencies represented urban as
‘well.as smaller community areas. Patients in the study had
a broad range of medical diagnoses. Discharge planners as

*well.as graduate medical students were used to recruit

54

families for the study. The purpose of the larger study was
to examine family caregivers who were experiencing new
dependencies in the caregiving role over an eighteen month
period of time. Six hundred twenty-eight caregivers agreed
to participate and met the criteria for the larger study.

This project utilizes a subset of the above sample
(n=120) consisting of daughters new to the caregiving role
identified by Pohl (1992). The goal of this project is to
look at the effect of perceived family support on positive
and negative beliefs about caregiving in this subset.
Inclusion criteria were set by Pohl (1992) and included the
following: 1) daughter was the primary caregiver of the
mother for the first time; 2) mother was 55 or older; 3)
daughter was assisting with at least one ADL or two IADL's
or one health care activity; 4) the mother resided in a home
in the community (either own home or a family member's or
friends'); 5) daughter was not paid for caregiving; 6)
daughter was not caring for more than one disabled family
member when the study began; and 7) daughter spoke and read
English.

Instrumentation

Positive beliefs about caregiving was measured by using
a seven item scale labeled “self esteem” on the Caregiver
:Reaction Assessment (Given et al., 1992). The scale
«describes positive reactions to caregiving such as enjoy
tearing for mother, feel privileged to care for mother,

:really want to care for mother, etc. Responses to each item

55
range from one (strongly disagree) to five (strongly agree).
Item number 9 “I wish my family depended on me less to care
for .” is reverse scored item. A higher score
indicates more positive beliefs about caregiving. Mean
scores, ranges and standard deviation will be used. The
overall scale has been subjected to rigorous testing
including confirmatory factor analysis. Cronbach's alpha
for this scale has been reported .90 (Given et al., 1992) on
a mixed population and .80 (Pohl, 1992) which consisted of
daughters only.

Negative beliefs about caregiving were measured using a
seven item sub-scale labeled “sense of entrapment" which
described negative feelings about caregiving (Stommel,
Given, & Given, 1990). The seven items included items like
feeling overwhelmed by problems, getting discouraged,
feeling forced into caring for mother, etc. and were part of
a forty-two item caregiver burden inventory. The scale was
subjected to vigorous testing by the authors. Responses on
the scale range from one (strongly disagree) to five
(strongly agree). A higher score indicates more negative
beliefs about caregiving. Mean scores, ranges, and standard
Ideviation will be used. Cronbach's alpha were reported at
.88 both the Pohl (1992) daughter sample and from a mixed
sample (Stommel et al., 1990).

Family support was measured by the Social Assistance
.Scale. This is an eight item scale which describes

(different type of assistance offered by family members such

56
as staying with mother so caregiver could do something else,
helping with transportation, checking on caregiver to be
sure you are all right, helping with physical care, etc.
Responses on the scale range from one (rarely or none of the
time) to four (almost all of the time). A higher score
indicates more family assistance. Mean scores, ranges, and
standard deviation will be used. Reliability for this scale
is not available so inter-factor correlation will be done to
confirm reliability for this scale.

Demographic data will also be used to describe
characteristics of the group including race, caregiver
marital status, caregiver educational level, caregiver
employment, mother's marital status, mother's living
arrangement, number of assistance required by mother with
ADL, IADL and health activities. Caregiver's perception of
mother's overall physical and mental health will be included
for descriptive purposes.

Data Collection Methods

Data for this project includes information obtained
during the initial screening interview used to determine
eligibility as well as information obtained during a follow-
‘up»interview and questionnaire. Data was collected by
(iischarge planners and medical students who underwent
‘vigorous training which included instruction as well as role
leaying and practice videotaped interviews. Initial
screening interviews of the daughters involved in the study

occurred within two to four weeks (n=21 days) after the

S7
mother was discharged from the hospital. The screening
interview assessed whether the caregiver situation met the
criteria for the study was well as the mother's limitation.
The follow up interview was to have occurred within one
month of the screening with the mean time range between
screening and follow up being 21 days.

This project is a secondary analysis of data that was
obtained for the larger MSU study and consisted of the
initial telephone screening interview, the follow up -
interview lasting forty-five to sixty minutes and followed
by the paper and pencil self-completed questionnaire which
respondents returned by mail.

Analysis of the Data

Quantitative data analysis will be carried out using a
“Pearson r? formula to look for correlations among the study
variables. A significance level of .05 will be used for the
project. The independent study variables are positive
feelings about caregiving and negative feelings about
caregiving. The independent variable is family support.

Demographic data will be summarized including the mean,
'the standard deviation of the following variables including
:race, marital status of caregiver, educational level of
icaregiver, employment status of caregiver, marital status of
mother, number of assistance required with ADL, IADL, and
health activities, and living arrangement by category.
Demographic data will be used for descriptive purposes to

describe the population.

58
Protection of Human Subjects and Approval

The subjects involved in the larger study gave written
consent after the study was explained in person and in
writing when they were recruited. The larger project was
approved by the University Committee on Research Involving
Human Subjects at Michigan State University and each of the
twenty-seven agencies recruiting subjects. The caregiver
and patient were given a letter of explanation with a toll
free 1-800 number they could call if they had questions or
concerns regarding the study. There were no identified
risks to the caregiver in the primary study. The main
concern identified was the time commitment which included
the forty-five to sixty minute telephone screening interview
and the follow up questionnaires expected to take
approximately twenty minutes to complete. Confidentiality
was provided by the use of case numbers versus names on all
questionnaires.

The present project involves the secondary analysis of
data obtained from the larger study. The project was
reviewed by and received approval from the University
Committee on Research Involving Human Subjects (UCRIHS) at
iMichigan State University prior to data analysis. Formal
approval can be found in Appendix B located in the back of
‘the study. The researcher had access to data case numbers
Ionly to maintain confidentiality. The researcher received

‘the data by case number on a disk with no identifying

59
information which prevented the investigator from
identifying any individuals participated in the study.
Assumptions and Limitations

1. A secondary analysis of data limits the researcher to
information obtained by the initial researcher.

2. Persons who voluntarily participate in studies may not
be representative of the population which will limit
generalization to the population as a whole.

3. Not all biases can be accounted for in a small study.

4. Daughters offer a unique perspective and response to
the caregiving role.

5. The Social Assistance subscale is a newly developed
scale and psychometrics are not available.

Hypotheses
The following hypotheses are proposed for the study:

1. Family support will be positively related to positive
beliefs about caregiving. .

2. Family support will be negatively related to negative
beliefs about caregiving.

RESULTS
This section includes a description of the data
analysis. Tables are provided to summarize the data and to
raddress the research question of: Among a group of
caregiving daughters providing care to elderly mothers, is

‘Ehere a relationship between the perception of family

support for the caregiving role and positive and negative

bel iefs about caregiving?

60
Sample

This analysis consists of 120 daughters caring for
their elderly mothers post hospitalization. Caregiving
daughters were primarily Caucasian (n=102, 85%) with African
American (n=13, 10.8%), Mexican American (n=2, 1.7%), Native
American (n=2, 1.7%), and Asian/Pacific Island (n=1, 0.8%)
making up the remainder of the sample. The majority of
daughters were married or remarried (n=20, 16.7%), with
single, never married (n=20, 16.7%) or divorced (n=14,
11.7%) making up the remainder of the population.
Educational levels varied from grade school or less (n=1,
0.8%) to graduate professional degree (n=5, 4.2%), with the
majority of daughters reporting high school (n=37, 30.8%),
some high school (n=21, 17.5%), or some college or technical
education (n=44, 36.7%). The majority of daughters (n=79,
65.8%) reported being employed outside the home prior to
caregiving with the majority (n=57, 47.5%) reporting full
time employment. At the time of data collection, full time
employment had dropped (n=39, 32.5%) with daughters (n=3,
2.5%) quitting work for caregiving, and daughters (n=2,
1.7%) on a leave of absence from employment.

The majority of care recipients were widowed (n=94,
78.3%), with married (n=12, 10%), divorced (n=9, 7.5%),
separated (n=4, 3.3%), or single (n=1, 0.8%) making up the
remainder of the population. Slightly over one half (n=66,
55%), lived with the caregiver (See Table 1). Physical

health of care recipients was reported as fair (n=49, 40.8%)

61

 

 

Table 1
o ' D‘uoo 0.9. , - -. ‘0 ‘ -.I0. o. ‘ :- ° ‘8 0= 0
Frequency Percent
Caregiver
Race
Caucasian 102 85.0
African American 13 10.8
Mexican American 2 1.7
Native American 2 1.7
Asian/Pacific Island 1 0.8
100%
Marital Status
Single, Never Married 20 16.7
Married/Remarried 78 65.0
Divorced 14 11.7
Widowed 6 5.0
Separated 2 1.7
100%
Education
Grade School or less 1 0.8
Some High School 21 17.5
High School 37 30.8
Some College/Technical 44 36.7
College 9 7.5
Some Graduate/Professional School 3 2.5
Graduate/Professional Degree 5 4.2
100%
Employment (prior to Caregiving)
Full Time 57 47.5
Part Time 21 17.5
Employment Status (after taking on caregiver role)
Employed Full Time 39 32.5
Employed Part Ttime 18 15.0
Self Employed 6 5.0
Retired 17 14.2
Leave of Absence 2 1.7
Unemployed-Layoff 16 13.3
Not Employed for Pay 19 15.8
Quit Work to Care 3 2.5

100%

62

Table 1 (cont.)

 

 

Frequency Percent
Care Recipient
Marital Status
Single/Married 1 0.8
Married/Remarried 12 10.0
Divorced 9 7.5
Widowed 94 78.3
Separated 4 3.3
100%
Living Arrangement
Live with Caregiver 66 55.0
Live Elsewhere 54 45.0
100%

 

to poor (n=47, 39.2%) by caregivers while mental health of
the recipient was rated as good (n=57, 47.5%) to fair (n=39,

32.5%) (Table 2).

 

 

Table 2
‘9.‘| are " ‘I 0 0 ‘ . 'o . «:0 v‘c - o‘ o
Df_9are_Eecinient_InelZQl
Frequency Percent
Physical Health
Excellent 2 1.7
Good 22 18.3
Fair 49 40.8
Poor 47 39.2
100%
Mental Health
Excellent 4 3.3
Good 57 47.5
Fair 39 32.5
Poor 20 16.7

100%

 

63

Caregiver daughters reported on assistance with
activities of daily living (ADL's), instrumental activities
of daily living (IADL's), and health care activities (HCA)
which were required by the elderly mothers. Activities were
scored as independent (needing no assistance) to requiring
assistance which ranged from some help/supervision to total
assistance (Table 3). See Table 4 for the breakdown by
category of the number of assistance with ADL, IADL, and
health care activities required by mothers.

Family Support

Family social support was measured by the mean score of
the Social Assistance Scale (Barnes & King, 1990). This
scale was a new scale used in this study, therefore no
reliability and validity data is available for this scale.
A correlation matrix was calculated to analyze correlations
between items (Table 5). The alpha coefficient was
calculated at 0.76 for this scale. Items of the Social
Assistance scale were scored on the following scale:
1=rarely or none of the time; 2=some of the time; 3=most of
the time; and 4= almost all of the time. The mean scale
score for the social assistance scale was 1.79 with a
standard deviation of 0.55. Individual item means were
calculated as well as mean score for the entire scale. Mean
ranges on the scale were minimum 1.00 and maximum 3.75 (See

Table 6).

64
Table 3

 

 

Frequency Percent
ADL's (Needs Assistance)
Dressing 65 54.2
Eating 30 25.0
Bathing . 78 65.0
Walking in house 58 48.3
Toileting 45 37.5
Transferring 48 39.5
IADL's (Needs Assistance)
Cooking 102 85.0
Housework 114 95.0
Shopping 115 95.8
Laundry 107 89.1
Transportation 118 98.3
Money Management 84 69.7

Health Care Activities (Needs Assistance)

Urinary Catheter 12 10.0
Oxygen 25 20.8
IV Meds 8 6.7
Tube Feedings 6 5.0
Injections 19 15.8
Exercises 47 39.2
Bedsores 14 11.7
Skin Problems 36 30.0
Colostomy 5 4.2
Post Op Incision 21 17.5
Oral Meds 111 92.5
N-G Tube 3 2.5
Urine Incontinence 26 21.7
Stool Incontinence 27 22.5
Suctioning 3 2.5

 

65

 

 

Table 4
‘01‘0 ... " ‘0 0 0‘9‘09'1 . 0 : . ' o I.
00. r "‘0 . : ' ° ° 0 Do :9 -no .-.
: E l' 'l' C = i 1
Number Frequency Percent
ADL's
0 28 23.3
1 19 15.8
2 16 13.3
3 10 - 8.3
4 14 11.7
5 12 10.0
6 21 17.5
99.9%
IADL's
0 1 0.8
1 1 0.8
2 3 2.5
3 3 2.5
4 11 9.2
5 29 24.2
6 72 60.0
100%
HCA
0 1 0.8
1 27 22.5
2 27 22.5
3 21 17.5
4 19 15.8
5 12 10.0
6 4 3.3
7 5 4.2
8 4 3.3
99.9%

 

Activities of Daily Living: M=2.69; SD=2.21
Instrumental Activities of Daily Living: M=5.31; SD=1.13
Health Care Activities: M=3.09; SD=1.89

66

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Table 6

I! H E i . J E . ! i J I = I

 

 

Mean Standard Deviation

Item 1: Helped with

physical care 1.79 .92
Item 2: Spent time

keeping mother company 2.19 .96
Item 3: Stayed with

mother 1.57 .73
Item 4: Given daughter

emotional support 2.32 1.14
Item 5: Helped with

transportation 1.57 .81
Item 6: Heled with

material goods 1.21 .61
Item 7: Checked on

daughter 2.08 1.10
Item 8: Encouraged

daughter 1.51 .73

 

Alpha Coefficient=0.76
Mean=1.79; Standard Deviation=0.55
Positive Beliefs about Caregiving

Positive beliefs about caregiving were calculated by
using the mean score on the seven item self esteem scale
from the Caregiver Reaction Assessment (Given et al., 1992).
Responses to each item range from one to five on the
following scale: 1) strongly disagree; 2) disagree; 3)
neither agree or disagree; 4) agree; and 5) strongly agree.
A higher score indicates more positive beliefs about

caregiving. Item number seven.WI‘wish my family depended on

68

me less to care for my mother?‘was reverse scored in this
scale. The alpha coefficient calculated on this sample was
.80. The mean score for the positive beliefs about
caregiving was 3.69 with a standard deviation of 0.64. Mean
range on the scale was a minimum of 1.71 and a maximum of
5.00 (See Table 7 for Positive Beliefs).

Negative Beliefs about Caregiving

The negative beliefs about caregiving scale was
calculated by using the mean score on the:“sense of
entrapment? sub scale (Stommel et al., 1990). Responses on
the scale range from one (strongly disagree) to five
(strongly agree) with a higher score indicating more
negative beliefs about caregiving. The alpha coefficient
calculated on this sample was .86. The mean score on the
negative beliefs about caregiving was 2.77 with a standard
deviation of 0.91. The mean ranges on the scale were a
minimum of 1.00 and a maximum of 4.83 (See Table 8 for
individual means on Negative Beliefs Scale).

Correlations were performed to test the two hypothesis
proposed for this study which were: 1) Family support will
be positively related to positive beliefs about caregiving;
and 2) Family support will be negatively related to negative
beliefs about caregiving. Correlations were performed
between the variables of family support and positive beliefs
and family support and negative beliefs using a .05
significance level. The hypothesis could not be supported

by the correlations (See Table 9).

69

Table 7

I! H E '!° E J’ E El ! : . . I = 1

 

 

Mean Standard Deviation

1. Caring for my mother is

important to me 4.70 .50
2. I enjoy caring for my

mother 3.76 .98
3. Caring for my mother

makes me feel good 3.90 .82
4. I feel privileged to

car for my mother 3.62 .98
5. I really want to care

for my mother 4.09 .91
6. I will never be able to

do enough caregiving to

repay my mother 3.04 1.19
7. I wish my family depended

on me less to care for

my mother 2.73 1.15

 

Alpha Coefficient=.80
Mean=3.69; Standard Deviation=0.64

70
Table 8

. . . . E = 1

 

 

Mean Standard Deviation

1. I feel overwhelmed by

the problems I have

caring for my mother 2.90 1.06
2. I get very discouraged

caring for my mother 2.78 1.11
3. I feel I was forced into

caring for my mother 2.77 1.34
4. I feel trapped by my

caregiving role 2.71 1.23

5. At this time of my life,

I don't think I should

have to be caring for

my mother 2.38 1.10
6. Just when I though times

were going to be easier

for me I have to be a

caregiver 3.17 1.13
7. Since caring for my

mother, sometimes I

hate the way my life

has turned out 2.61 1.29

 

Alpha Coefficient=.86
Mean=2.77; Standard Deviation=0.91

Table 9

3 J I' E S! i M . I]

 

 

Negative Beliefs Positive Beliefs
Family Support -.1371 .1551
(n=118)
P=.139 P=.094

 

(Coefficient/(cases)/2—tailed Significance)

71
Discussion

The research question: Among a group of caregiving
daughters providing care to elderly mothers, is there a
relationship between the perception of family support for
the caregiving role and positive and negative beliefs about
caregiving? Could not be answered in this study. Despite
the fact that the hypothesis in this study could not be
supported, this researcher believes that some relevant data
can be obtained from this study.

DISCUSSION AND IMPLICATIONS FOR RESEARCH AND PRACTICE

A discussion will follow that covers the sample, the
variables of family support, positive feelings about
caregiving and negative feelings about caregiving, as well
as the statistical procedures used and the fit within the
proposed model.

The sample used in this study is similar to other
mother daughter samples used in mother daughter research
(Horowitz, 1985; Walker & Pratt, 1991). At first glance,
the sample seemed to be fairly burdened with tasks of ADL's
(M=2.69, SD=2.21), IADL's (M=5.31, SD=1.13) and health care
activities (M=3.09, SD=1.89) but on closer inspection, this
may not be apparent. In viewing the data on ADL's, care
recipients were fairly independent in areas such as eating,
toileting and transferring. Areas requiring greater
assistance included items such as bathing and dressing.
While important, these are not high frequency items needing

to be done several times per day.

72

In viewing IADL's, there was a high dependency in all
areas except for money management which may represent an
attempt on part of the elderly mothers to maintain some
sense of control or independence. The IADL areas may be
areas that the caregivers could ask for assistance from
friends or families. Health care activities were not
frequent with the exception of administration of oral
medications which were required by the majority (92.5%) of
the care recipients. Overall, this group of care recipients
were fairly independent in areas of ADL's and HCA's which
may impact upon the positive beliefs expressed by this group
of caregiving daughters.

In viewing the social support scale, this researcher
acknowledges that it appears to be a very global scale of
family support and does not encompass many of the items
present in social support. Social support is a multi-
dimensional concept. An attempt was made to factor out the
items in this scale and although it appears that more than
one factor is present, it is not the case. Internal
consistency was good for this scale with an alpha
coefficient reported at 0.76.

In viewing family support in this study, participants
overall scored relatively low on family support (M=1.79,
SD=0.55). Viewing the individual scale items, participants
scored highest on scale items figiven you emotional support
or encouragement? (M=2.31, SD=1.13), followed by'“spent time

keeping mother company” (M=2.18, SD=0.58) , and “checked on

73
you to be sure that you were all right? (M=2.08, SD=1.09).
The lower score findings may be supported by the Brody
(1989) study in which caregivers exceeded groups of siblings
in the ways siblings were meeting parental care
responsibilities. “Two thirds of the caregivers in this
study felt that a sibling had not visited the mother enough,
had wanted to be asked before helping or could have helped
more; more than one half felt that a sibling had not called
or had not done a fair share of parent care” (Brody, 1989,
p. 532). These feelings of low family support may also be
related to the new caregiver role with the daughters
concentrating on mastering the role and the inability to
seek assistance for a variety of reasons. Another possible
explanation for the low scores on the scale may be the fact
that the scale does not capture the concept of family .
support.

Positive beliefs were evident in this study on the
positive belief scale (M=3.69, SD=0.64) with 3=neither agree
or disagree and 4=agree. Beliefs that were viewed as most
positive included, “caring is important to me (M=4.70,
SD=0.50) and “really want to provide care” (M=4.09,

SD=O.91). Interestingly, the lowest item on the positive
scale was Wnever able to repay” (M=3.04, SD=1.19). These
positive responses may express the daughter's willingness,
commitment and desire to care for their mothers.

Negative beliefs were not strongly expressed in this

study on the negative beliefs scale (M=2.77, SD=0.91) which

74
corresponded to 2=disagree and 3=neither agree or disagree.
Items on the scale that scored the highest mean score
included, fiIust when I thought things were going to get
easier for me, I had to be a caregiver” (M=3.17, SD=1.31)
and.“I feel overwhelmed by the problems I have caring for my
mother” (M=2.90, SD=1.06). The higher means on these items
may be capturing the realization of the newness of taking on
the caregiver role as well as a feeling of being overwhelmed
with responsibilities demanded by the role. Perhaps an
explanation may be the newness of the caregiving role and
exploration of the role as the data gathered in this study
occurred shortly after the start of the caregiving
experience.

The majority of literature on the caregiving experience
does not address the issues of caregivers new to the role.
Caregivers included in the studies have a variable length of
caregiving experience. The negative aspect of caregiving is
much more prevalent in the literature than the positive
aspects of caregiving.

Conceptual Model

Although the hypothesis could not be supported in this
study, this researcher believes that more research needs to
be done before the model is rejected. Although it is early,
an improvement suggested on the model may be the
clarification of the model by further identifying family
support as a high degree of family support or as a low

degree of family support. As the model is conceptualized

75
presently, degree of family support is not specified and
groups all types of family support may diminish the impact
of family support either high or low on the positive or
negative beliefs about caregiving. See Figure 4 for revised
model.

The division of the sample into groups of high family
support and low family support may strengthen correlations
between the variables as well as allow for comparison
between groups using statistical procedures such as ANOVA.
In future research using this scale, it might be useful to
define high family support by including individuals who
scored two or over in one group and those who scored less
than two in a low family support group. A disadvantage of
this approach may be a disproportionate amount of
individuals in one group or the other. Another suggestion
may be to form groups using the mean and one half of the
standard deviation for each group. The disadvantage to this
approach will be the loss of a part of the sample group.

Limitations

As previously mentioned, the Social Assistance Scale
(Barnes & King, 1990) has not been tested previously and no
psychometric data is available. Initial psychometrics
obtained in the present study were promising with an initial
Alpha Coefficient of 0.76. Further testing of the scale

among additional groups is definitely indicated.

 

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77
Implications for Nursing Practice

There are many implications for the CNS in primary
care. Throughout the literature, there seems to be an
abundance of information about the negative aspects of
caregiving. This negative theme seems to carry through into
primary care with the primary care providers focused on the
negative aspects of caregiving. Many times the primary care
provider is not aware of the caregiving situation until
negative consequences are apparent. Women as caregivers may
be stressed by work and family obligations as well as the
caregiving situation itself. Bunting (1989) reports,
“Negative consequences of caregiving for the caregivers
themselves include the emotional stresses of coming to terms
with the changing role and capability of the older person;
the restrictions on time and freedom; the economic burdens,
including loss or curtailment of employment; and the
detrimental effects on the caregiver's marital, family and
social relationships” (p. 65). The CNS should be alert to
symptoms such as fatigue, inability to sleep, depression,
complaints of decreased socialization or feeling of
abandonment that may accompany the caregiver role.

The Advanced Practice Nurse must realize that many
women the CNS may see in practice may be experiencing the
caregiving role by caring for elderly parents. The CNS
should incorporate questions into the practice that will
point out individuals who may be in a caregiving situation.

This current study of new caregivers seemed to project that

78
many positive feelings are associated with the caregiving
experience. It is also important that the CNS be aware of
and acknowledge the positive aspects and beliefs of
caregiving and support the positive beliefs that the
daughter may hold and help the daughter maintain a
perspective on the caregiving situation. It is important
that interventions for caregiving start early in the course
of caregiving which may be a step in minimizing some of the
negative aspects associated with the role. The CNS must
also realize that caregiving is often long term ongoing
commitment which should be assessed at intervals as part of
the care of the caregiving daughter.

The study presented here utilizes a sample of
caregivers relatively new to the caregiving role who are
taking care of individuals recently released from the
hospital. Education of caregivers is an essential nursing
intervention by the CNS in working with caregivers. The CNS
may also utilize information in this study when working with
new caregivers to give ideas about types of responsibilities
they might anticipate. Recipients in this study needed
assistance with many of the ADL's such as dressing, bathing,
walking in the house, transferring, toileting, and eating.
Health care activities such as administering oral
medications, exercises, treating skin problems, urine and
stool incontinence, and oxygen administered were prevalent
in this group. The CNS can be instrumental in educating the

caregivers about these types of activities.

79

Most commonly daughters in this study indicated needing
a high percentage of assistance with IADL's such as
transportation, shopping, housework, laundry, cooking, and
money management. The CNS can help the caregivers to think
about alternative strategies for accomplishing some of these
tasks associated with caregiving.

The daughters in this group indicated the perception of
very little family assistance. The CNS could explore family
assistance availability with the women and encourage a more
collaborative effort with other family members if feasible
or explore other resource options that the caregiving
daughters may use such as respite care, day care or other
community services. The caregiving daughters may need to be
“given permission? to use family or other options for
assistance. It is essential that the CNS be aware of
resources in the community that may be available and the
obstacles or barriers that the caregiver may experience
trying to assess the services so the caregiving daughter
will not be discouraged accessing services. Daughters may
be reluctant to access help from other family members or
community services so anticipatory guidance may be a good
strategy to use so that the daughters can access services
when appropriate. The CNS can stress the importance of
getting emotional support from family members to the
caregiving daughter during the caregiving situation. The

importance of giving emotional support to the caregiving

80
daughter should be stressed to various family members as
available.

By utilization of supports and community assistance,
the caregiving daughters may be able to maintain employment.
Employment issues should be discussed and attempts made to
work out a possible solutions with the caregiving daughter
as loss of employment could have long term effects on the
daughter's future.

This sample was relatively new to the caregiving role
and positive feelings were apparent. It is interesting to
note that although caregivers in this study rated care
recipient's physical health as fair to poor, mental health
was rated as good to fair by caregivers. The CNS should be
aware that changes in status may increase the negative
response to the caregiving situation. It is important that
the CNS acknowledge the positive aspects of caregiving as
well as the negative aspects that may accompany the role.
This may help to normalize ambivalent feelings for the
caregiver. The CNS can work with the women on an individual
basis to work out specific strategies that may help the
daughter to cope with the caregiving role.

Another role for the CNS is to encourage education of
the public in regards to the caregiving role. The role of
caregiver should be discussed in nursing education, women's
health classes, and perhaps even community education

classes.

 

8]
Implications for Further Research

In general, research on caregiving needs to continue as
individual life expectancy continues to expand and family
size decreases. Researchers need to continue to look for
answers to questions, “What is the role of family support in
caregiving?" and “What influence does family support have on
positive and negative feelings about caregiving?"

Strategies will need to be developed to keep the elderly in
the community. It is important to continue to look at
groups such as spouses, siblings, daughters, and sons
differently as each group have some unique characteristics
and beliefs about the caregiving role.

The Social Assistance Scale (Barnes & King, 1990) needs
more testing and revision as this project is the first
documented use of the scale. The scale needs to be modified
to encompass more aspects of family support as well as used
among a variety of different caregivers to see if
differences exist in the perception of family support by the
caregivers. Longitudinal studies may be also indicated to
study how the perception of family social assistance varies
over time.

For this particular project, a longitudinal study may
be interesting to see if family social assistance becomes
more apparent as the length of the caregiving experience
expands. It may also be beneficial to use additional tools
that could supplement the family social assistance scale.

According to Kane (1988), family support is a multi-

82

dimensional concept so adding additional scales that capture
the realms of reciprocity, advice/feedback, and emotional
support may increase the opportunity to fully understand the
role that family support plays in the caregiving experience.

For future use in research it may be beneficial to
examine the positive belief scale (Given et al., 1992) and
consider altering the reverse scored question. This
question seems to have a lower mean both in this study as
well as the Pohl (1992) study and may be influencing the
overall mean of the scale. Options that might improve
response on this question might include changing the order
of the question in the scale so that the reverse nature is
more apparent or else consider changing the wording to
require a response similar to other questions in the scale.

This study addressed caregivers relatively new to the
role. Further research should be done to study the new
caregivers as the individuals adjust to the role. Research
also needs to be done comparing relatively new caregivers to
seasoned caregivers to determine similarities and
differences among groups. An additional opportunity for
research would be to longitudinally study how positive and
negative feelings vary as the length of the caregiving
experience increases.

Since the focus of this study is mother daughter
caregiving, this researcher acknowledges the fact that
biases may be present in the findings. With the recent

changes in the lives of women, such as increased full time

83
employment, and the blurring of gender lines with men now
taking on some of the roles traditionally associated with
women, more research needs to be done on the roles that men
play in the role of caregiving.

In conclusion, although no correlation could be
demonstrated between family social assistance and positive
and negative feelings about caregiving, several important
factors were implied by the project. The new caregivers in
this group implied that as a group, it was felt that very
little assistance was available to them from family members.
It is also important to recognize the positive feelings that
were expressed by this group and how important the
caregiving experience was to them. In this particular study
of relatively new caregivers, positive feelings were more
strongly expressed than negative feelings. These factors
could have great implications for the CNS in a primary care

role.

LIST OF REFERENCES

LIST OF REFERENCES

American Association of Retired Persons (1994). A
profile of older Americans. Washington, D.C.: AARP, p. 1-

14.

Archbold, P., Steward, B. Greenlick, M. Harvath, T.
(1990). Mutuality and preparedness as predictors of

caregiver role strain Research_1n_Nursing_and_Health1

11(6), 375- 384.

Ballie, V., Norbeck, J., & Barnes, L. (1988). Stress,
social support, and psychological distress of family

caregivers of the elderly. Nursing_Reseangh+_11(4), 217-

222.

Barnes, C., Given, B., & Given, C.W. (1992).
Caregivers of elderly relatives: Spouses and adult children.

Health_and_Scc1al_flerkl_11(4)I 282- 289

Barnett, R., Kibria, N., Baruch, G., & Pleck, J.
(1991). Adult daughter-parent relationships and their
associations with daughter's subjective well- -being and

Psychological distress IDurnal_Df_Marriase_and_the_£amil¥1

51(2), 29- 42.

Brody, E., Hoffman, C., Kleban, M., & Schoonover, C.
(1989). Caregiving daughters and their local siblings:

Perceptions, Strains, and Interactions. The_§ergntglggist+

22(4), 529- 533.

Bunting, S. (1989). Stress on caregivers of the

elderly. Adyances_1n_Nurs1ns_Sciencel_11(2). 63- 73-

Clipp, E., & George, L. (1990). Caregiver needs and

patterns of social support Journal_cf_§erontclcg¥1_3221al
Sciencesl_45(3). 5102 111-

George, L., & Gwyther, L. (1986). Caregiver well-
being: A multidimensional examination of family caregivers

of demented adults. The_§exgnLQlQQiSLL_Z§(3), 253-259.
Gilligan, C. (1982). In_a_different_yoice. Cambridge,

MA: Harvard University Press.

84

85

Given, C., Given, B., Stommel, M., Collins, C., King,
8., & Franklin, S. (1992). The caregiver reaction
assessment (CRA) for caregivers to persons with chronic

physical and mental impairments. Researgh_1n_Nnr§1ng_and
Health1_l§(4). 271- 283

Horowitz, A. (1985). Sons and daughters as caregivers
to older parents: Differences in role performance and

consequences. The_§ergntolesistl_25(6). 612-617-

Kane, C. (1988). Family social support: Toward a

conceptual model. Adxances_1n_Nursing_Sciencesl_1flt2). 18-
25.

Lawton, M., Kleban, M., Moss, M., Rovine, M., &
Glicksman, A. (1989). Measuring caregiving appraisal.
._ IQ . - 0| . e- ' ' oo .. . -o,- (3), 61-

71.

Pohl, J. (1992). Mother-daughter relationships and
adult daughter's commitment to caregiving for their aging
disabled mothers. (Doctoral Dissertation, University of
Michigan, 1992).

Roy. C-. & Andrews. H- (1991). The_RDx_adautatinn
mDdel1_The_definitixe_statement. Appleton & Lange.
Norwalk, CT.

Russell, D., & Cutrona, C. (1984). Sgg1a1_ngy1s1gnfi.
Paper presented to American Psychological Convention in
Toronto, Ontario, Canada.

Sheehan, N., & Nuttall, P. (1988). Conflict, emotion,
and personal strain among family caregivers. Family

Relationsl_1l(l). 92 98

Stommel, M. Given, C. W. & Given, B. (1990).
Depression as an overriding variable explaining caregiver

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Stommel, M., Wang, 8., Given, C.W., & Given, B. (1992).
Focus on psychometrics: Confirmatory factor analysis (CFA)
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Strawbridge, W., & Wallhagen, M. (1991). Impact of
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Gerontologistl_1l(6), 770-777.

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Walker, A., & Allen, K. (1991). Relationships between
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APPENDICES

APPENDIX A

 

ID _ _ 1-3
CARD 9 I a 4-5
DATE _ _/_ _/_ _ 7-12

INT _ 13-14
INTCODE 1 15
CAREGIVING INVENTORY STUDY 5 16

Re are trying to understand how providing care for your family member has affected you, your
relationships with others, and your social activities and daily routines.

In the questions that follow, please circle the response that most represents hp! you feel
about each statement IhE_hlaDL_1iDe_lD_seee_stateseDts_re2rese_ts_the_nase_2f_the_elderlx_

person fgr whom you prgvjde gage. It may be helpful (but is not necessary) for you to place

the initials of the person on the blank line. Answer all the questions in response to caring
for your relative. Please circle one number for each statement using the code below:

- STRONGLY AGREE

 

5
4 - AGREE
3 - NEITHER AGREE 0R DISAGREE
Z - DISAGREE
1 - STRONGLY DISAGREE
(CIRCLE ONE NUMBER
FOR EACH)
1. My activities are centered around care for . 5 4 3 Z l ___
17
2. I am healthy enough to care for 5 4 3 2 1 ___
. - . 18
3. My family works together at caring for . - 5 4 3 2 1 ___
l
4. Caring for is important to me. 5 4 3 2 l ___
20
5. Since caring for I have enough time for myself. 5 4 3 2 1 ___
21
5 - STRONGLY AGREE
4 - AGREE
3 - NEITHER AGREE 0R DISAGREE
2 - DISAGREE
1 - STRONGLY DISAGREE
(CIRCLE ONE NUMBER
FOR EACH)
6. I feel overwhelmed by the problems I have caring for 5 4 3 2 1 ___
22
7. It takes all my physical strength to care for 5 4 3 2 1 ___
23
8. I enjoy caring for 5 4 3 2 1 ___
24
9. I wish the family depended less on me to care for 5 4 3 2 l ___
25
10. I have to stop in the middle of my work or activities to
provide care. 5 4 3 2 1
28—

87

ll.
12.
13.
14.

15.

16.

l7.

18.
19.

20.
21.
22.
23.

24.

My health has gotten worse since I’ve been caring for

Since caring for , I feel my family has abandoned me.
Caring for makes me feel good.

I have enough time for leisure and recreational activities
since caring for

It is very difficult to get help from my family in taking
care of .

Being a caregiver prevents me from taking care of my
own health.

I feel privileged to care for

Other have dumped caring for onto me.

I have eliminated things from my schedule since
caring for

I believe it is my responsibility to care for
I get very discouraged caring for
I have enough physical strength to care for

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

My family (brothers, Sisters, children) left me alone to
care for

SE!

ID

CARD Q I 8
s - STRONGLY AGREE
4 - AGREE
3 - NEITHER AGREE OR DISAGREE
2 - DISAGREE
1 - STRONGLY DISAGREE
(CIRCLE ONE NUMBER
FOR EACH)
5 4 3 2 1 ___
27
s 4 3 2 1 ___
23
5 4 3 2 1 ___
29
s 4 3 2 I ___
so
5 4 3 2 1 ___
31
5 4 3 2 1 ___
32
5 4 3 2 1 ___
33
s - STRONGLY AGREE
4 - AGREE
3 - NEITHER AGREE OR DISAGREE
2 - DISAGREE
I - STRONGLY DISAGREE
(CIRCLE ONE NUMBER
FOR EACH)
33
5 4 3 2 1 ___
34
5 4 3 2 I ___
35
s 4 3 2 1 ___
36
s 4 3 2 1 ___
37
s 4 3 2 I ___
38
s 4 3 2 1 ___
39
5 4 3 2 I ___
40

25.

26.
27.

28.

29.
30.
3].

32.
33.
34.

35.
36.

37.

38.

39.

Since caring for , it seems like I’m tired all of the

time.

I really want to care for

Since caring for , sometimes I hate the way my life has

turned out.

I visit family and friends less since I have been caring

for

Taking care of has not affected my physical health.

I feel I was forced into caring for

I have enough time to do my own work and chores since caring

for

I will never be able to do enough caregiving to repay

I feel trapped by my caregiving role.

Since I began taking care of my relative, I take better care

of my health.

I sleep just as much since caring for

At this time in my life, I don’t think I should have to be

caring for

I am sick more often since I began caring for my relative.

I could not live with myself if I just quit caring

for

Just when I thought times were going to be easier for me,

I have to be a caregiver.

89

IO _ _ _
CARD 9 1 Q

STRONGLY AGREE

AGREE

NEITHER AGREE OR DISAGREE
DISAGREE

STRONGLY DISAGREE

o—Nwfim
IIIII

(CIRCLE ONE NUMBER FOR EACH)

4 3 2 I ___
41

s 4 3 2 I ___
42

4 3 2 I ___
43

4 3 2 1 ___
44

s 4 3 2 I ___
4s

5 4 3 2 I ___
46

s 4 3 2 I ____
47

STRONGLY AGREE

AGREE

NEITHER AGREE OR DISAGREE
DISAGREE

STRONGLY DISAGREE

HNU‘UI
IIIII

(CIRCLE ONE NUMBER FOR EACH)

. s 4 3 2 l ___
“"" 4B

5 4 3 2 I ___
49

4 3 2 l ___
so

5 4 3 2 l ___
51

5 4 3 2 1 ___
52

s 4 3 2 I ___
53

5 4 3 2 I

54

s 4 3 2 I ___
55

ID__ _
CARO§1§

Please remember we are trying to understand how providing care for your family member has

affected you.

40.
41.
42.

43.

44.
45.

46.

47.
48.
49.

Please Circle one number for each statement using the code below:

 

care?

4 - A GREAT DEAL
3 - QUITE A BIT
2 - SOME WHAT
I - VERY LITTLE
(CIRCLE ONE NUMBER
FOR EACH)
TO what extent ...
do you get frustrated with your situation? 4 3 2 I ___
56
are you so frustrated that you have to leave the room? 4 3 2 I ___
57
did you get angry with the person for whom you were providing
4 3 2 I
35‘
dO you feel that you are manipulated by the person for whom you
were providing care? 4 3 2 l ___
59
4 - A GREAT DEAL
3 - QUITE A BIT
2 - SOME HHAT
l - VERY LITTLE
(CIRCLE ONE NUMBER
FOR EACH)
did you resent the fact that others didn’t help provide care? 4 3 2 I ___
60
do you believe your relationship with your relative is
strained? 4 3 2 I ___
61
did you become irritated with the person for whom you
provided care? 4 3 2 I ___
62
did you resent the way your life has turned out? 4 3 2 I ___
63
did you get so angry you have to stop what you are doing? 4 3 2 I ___
64
do you get so upset that it interferes with caring? 4 3 2 I ___
65

9O

 

CG 11, Have 1
Regular Telephone
Social Assistance
Page 9

SOCIAL ASSISTANCE

The questions I just asked were about the assistance that you receive through
agencies. Now I’m going to ask you questions about the assistance that you may
receive from other people to care for your (relationship or name of patient). By
other people, I mean friends or relatives whether you pay them or not.

For the next set of questions, I will ask “How often since discharge, over the past
month, has anyone in your family given you assistance in the following ways,“ and 1
will read a list of activities. I would like you to please pick from one of four
categories of responses: You can choose from 'Rarely or None of the Time,“ “Some of
the Time," “Most of the Time,“ or “Almost all of the Time.“ I will repeat those
categories again if necessary.

How often since discharge or gver the past mgnth, HAS ANYONE IN YOUR ffifllL! given you
assistance in the following ways: (CHECK ONE FOR EACH TASK)

33(1) (2) (3) (4)
RARELY OR ALMOST
NONE OF SOME OF MOST OF ALL OF
THE TIME THE TIME THE TIME THE TIME

 

 

A) Help with physical care.

 

8) Spend time keeping your
(Care Recipient) company.

 

C) Stayed with so that
you could do something
else for a few hours.

 

0) Given YOU emotional support
or encouragement.

 

E) Helped with transportation
— for either you or (Care
Recipient).

 

F) Helped 19g with money or
other material goods.

 

G) Checked on 19p to be sure
that you were all right.

 

H) Provided or encouraged
diversional activities for
(care recipient), such as
cards or scrabble. etc.

 

 

 

 

 

 

91

 

APPENDIX B

 

 

OFFICE OF
RESEARCH
AND
GRADUATE
STUDIES

MwmmmsuuUmwnm
R2Mmmmmmnhmmg
hammmlmmmm
flmfime

517855-21“)
FAX 517/432-1171

The Mrcmpan SUP Unlvsrwy
IDEA IS msnMromr Dryers/7y
Emwmamkmm

MSU :3 an unmumeaalon
W‘Womfi IOSI'u’u'in”

  
  

MICHIGAN STATE
U N l v E R s I T Y

June 9, 1995

To: Carol Rank
204 Park Meadows
Lansing, MI 48917

RE: IRBI: 95-305
TITLS: TH! PERCEPTION OF FAMILY SUPPORT RELATZD TO
POSITIVE AND NEGATIVE BELIEFS ABOUT CAREGIVING
AMONG A GROUP OF DAUGHTERS CARING POR ILDERLY

MOTHERS
REVISION REQUESTED: N/A
CATEGORY: Z-H
APPROVAL DATE: 06/08/95

The University Committee on Research Involving Human Sub ects'(ucnIHS)
review of this project is complete. I am pleased to adv as that the
rights and welfare of the human subjects appear to be adequately
rotected and methods to obtain informed consent are appropriate.
herefore, the UCRIHS approved this project and any rev sions listed
above.

IIIIHAL: 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 a proval 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 roject beyond tha time need to submit it
again or complete rev ew.

REVISIONS: UCRIHS must review any 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 aha other time during the year
send your written request to the CRIHS Chair, requesting revised
approval and referencing the project's IRB i and title. Include
in our request a description of the change and any revised
ins ruments, consent forms or advertisements that are applicable.

PIOILZIS/

CIANGGSI Should either of the followin arise during the course of the
work, investigators must noti y UCRIHS promptly: 11) problems
(unexpected side effects comp aints, e c ) involv ng 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 lease do not hesitate to contact us
at (517)355-2180 or PAX (517)4 i- 171.

Sincerely,

avid I. "right, h.D.
OCRIHS Cha r

Dlflzkaa/lcp

cc: Barbara A. Given

I92

"INITIAL)LIMIT)“