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Families that Care: an ethnographic study of families
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6/01 cJCIRC/DateOue.p65-p.15

FAMILIES THAT CARE:
An ethnographic study of families engaged in the provision of elder care

By

Loretta Brewer

A DISSERTATION

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

INTERDISCIPLINARY DOCTOR OF PHILOSOPHY
Social Sciences

2002

ABSTRACT
FAMILIES THAT CARE: AN ETHNOGRAPHIC STUDY OF FAMILIES
ENGAGED IN THE PROVISION OF ELDER CARE
By

Loretta Brewer

This project utilized ethnographic methods to explore the culture of caregiving,
Situated within the context of families that are actively engaged in the provision of elder
care. The project was designed to test the hypothesis that families utilizing a team
approach to caregiving experience more positive outcomes than those utilizing the
primary caregiving approach.

Twenty-two families were recruited from two agencies that provide services to
older adults. Of these families, twelve represent the primary caregiving approach and ten
represent the team caregiving approach. Semi-structured interviews were conducted with
care recipients, when feasible, as well as with all available caregivers. In addition, a
representative from each family completed a participant survey in order to collect
pertinent demographic data.

Participants utilizing either the primary caregiving approach or a team approach
were able to identify both positive and negative effects of caregiving on their personal
sense of well being. While team caregivers reported experiencing difﬁcult emotions
similar to those reported by primary caregivers, they also had more immediate access to
support from other family members. This support seemed to moderate the negative

effects of those emotions.

The issue of quality of care was addressed in interviews with both care recipients
and caregivers. There was no evidence of substantial differences in the quality of care
provided by families using a team approach as compared to those using a primary
caregiving approach. The ﬁndings also suggest that caregiving approaches are rarely the
result of a deliberate decision-making process. Rather, they appear to evolve over time as
families adapt to alterations in both internal and external conditions. In addition, role
deﬁnitions changed over time as caregivers occasionally became care recipients and as
family members who had been only tangentially involved with caregiving assumed more
central roles.

Future research must focus on caregiving systems rather than primary caregivers.
Only then can we begin to build caregiving networks that not only provide quality care to

those in need, but also enhance the well being of those who care.

Copyright by
LORETTA GAYE BREWER
2002

This dissertation is dedicated to the memory of my grandmother, Mildred Finley, and her
siblings. This family provided my ﬁrst case example of a team approach to caregiving.

Their memory served as the inspiration for the project reported here.

ACKNOWLEDGEMENTS

I gratefully acknowledge the support and constructive criticism provided by the
members of my Guidance Committee: Dr. Diane Levande, Dr. Margaret Nielsen,
Dr. Jacob Climo, and Dr. Barbara Ames, all of Michigan State University. I also want to
acknowledge the support provided by the Pearl Aldrich Endowment in Gerontology for
my pre-dissertation project, “A Qualitative Study of Family Care Models for Older
Adults” (Brewer, 2000). That project laid the foundation for the study reported here. In
addition, I want to thank the Care Management staff of Region IV Area Agency on Aging
for their assistance in recruiting project participants as well as the twenty-two families
who participated in the study. Finally, I want to thank my Spouse, Larry Brewer, for the
emotional support and technical assistance he provided throughout my doctoral studies as
well as during this project. Each of these people, in their own way, has contributed to the

successful completion of the following dissertation.

vi

TABLE OF CONTENTS

LIST OF TABLES .............................................................................................................. ix
LIST OF FIGURES ........................................................................................................... .x
CHAPTER 1
THE PROBLEM .................................................................................................................. 1
Problem Statement ................................................................................................... 2
Definition of Key Terms .......................................................................................... 5
Theoretical Orientation ............................................................................................ 6
CHAPTER 2
LITERATURE REVIEW .................................................................................................. 10
CHAPTER 3
METHODOLOGY ............................................................................................................ 22
Data Collection ...................................................................................................... 24
Sampling Procedure ................................................................................... 24
Participant Interview Procedures ............................................................... 28
Participant Survey Procedures ................................................................... 29
Data Analysis ......................................................................................................... 30
CHAPTER 4
RESULTS .......................................................................................................................... 32
Participant Survey .................................................................................................. 32
Description of Care Recipient Characteristics ........................................... 32
Description of Caregiver Characteristics ................................................... 35
Participant Interviews ............................................................................................ 39
What factors inﬂuence the selection of caregiving approaches? ............... 39
Is there a relationship between caregiving approach utilized and
caregiver well being? ................................................................................. 44
Effects of Caregiving on Relationship between Caregivers
and Care Recipients ....................................................................... 45
Effects of Caregiving on Relationships between Caregivers ......... 46
Other Effects of Caregiving ........................................................... 49
Self-Assessment of Caregiver Well Being .................................... 51
Difficult Aspects of Caregiving ..................................................... 53
Positive Aspects of Caregiving ...................................................... 58
Is there a relationship between the caregiving approach utilized
and the quality of care provided? ............................................................... 60
Care Recipients’ Perspectives Regarding Quality of Care ............ 61
Caregivers’ Perspectives Regarding Quality of Care .................... 63

vii

What type of interventions or supports do family caregivers believe

they need in order to strengthen their caregiving capacity? .................... 64

CHAPTER 5
SUMMARY, CONCLUSIONS AND IMPLICATIONS ................................................ 74
The Evolution of Caregiving Systems ................................................................. 74
Outcomes of Team and Primary Caregiving Approaches ................................... 77
An Ecological Analysis of Caregiving Systems .................................................. 78
Implications for Practice ...................................................................................... 80
Future Research Agenda ...................................................................................... 82
APPENDICE ................................................................................................................. .84
Appendix #1: Memorandum of Introduction ...................................................... 85
Appendix #2: Consent Form ............................................................................... 86
Appendix #3.A: Care Recipient Interview Guide ............................................... 87
Attachment: Elements of “Quality Care” ................................................ 88
Appendix #3.B: Caregiver Interview Guide ........................................................ 89
Appendix #4: Participant Survey ......................................................................... 9O
BIBLIOGRAPHY ............................................................................................................ 92
General References .............................................................................................. 99

viii

LIST OF TABLES

TABLE #1: Comparison Of Study Sample to National Survey Data

Regarding Age and Gender of Care Recipients ................................................................. 34
TABLE #2: Comparison of Study Sample to National Survey Data

Regarding Level of Disability/Level of Care .................................................................... 34
TABLE #3: Comparison of Study Caregivers with Caregivers Represented by

National Survey Data ........................................................................................................ 36
TABLE #4: Comparison of Caregiving Approach and Ethnic Identity ............................ 37

LIST OF FIGURES

FIGURE #1: Caregiver relationship to care recipient .................................. 38

Chapter 1
The Problem

This research project utilizes ethnographic methods to explore the culture of
caregiving, situated within the context of families that are actively engaged in the
provision of elder care. Scholars have suggested that families have distinct traditions and
ethos that partially account for the different ways they respond to the needs of their older
members (Gubrium, 1991). Furthermore, speciﬁc patterns or “cultural systems” of
caregiving have been described (Albert, 1990).

The project reported here was designed to test the general hypothesis that families
utilizing a team approach to caregiving experience more positive outcomes than those
utilizing the primary caregiving approach. Speciﬁc outcomes explored include caregiver
well being and the quality of care provided. It has been repeatedly demonstrated that
primary caregivers endure high levels of stress, fatigue, and exhaustion in addition to
ﬁnancial hardship, social isolation, and loneliness (Atchley, 1994; Zarit, 1992; Toseland
and Rossiter, 1989). Not infrequently, the caregiver’s health suffers as a result, especially
in the case of elderly spouses who are providing care (Haley, 1997; Brody, 1985). It
remains to be seen, however, whether team caregivers experience similar effects.

In addition, quality of care issues within formal caregiving systems have been
explored on many levels, including basic medical care, in-home health care, and long-
term care institutions. Less attention has been given, however, to the quality of care
provided by informal, family caregiving systems, despite the fact that the majority of care
for older adults is provided by such systems.

Available studies do suggest, however, that the quality of care is less than optimal

for many care recipients, resulting in unmet physical, emotional, and social needs

(Phillips and Rempucheski, 1986). Furthermore, a substantial number of care recipients
are at risk for abuse, neglect, or other forms of maltreatment (Pillemer, 1986; Pillemer, K.
and F inkelhor, 1988; Wolf, 1999). Bergeron (2001) has recently examined elder abuse
from the perspectives of caregiver stress and domestic violence theories. Case examples
were used to illustrate the reciprocal nature of violence within some caregiving systems
and to emphasis the need for a thorough understanding of the historical context of
caregiving relationships.

Finally, it is anticipated that this project will result in a better understanding of
how caregiving systems are constituted, how roles within such systems are deﬁned, the
meanings that participants ascribe to caregiving responsibilities, and the effects of
caregiving on individual and family well being.

Problem Sgtement

This project explores systems of family care for elders. The aim is to identify
caregiving systems that preserve the well being of caregivers while maintaining an
acceptable quality of care for older adults. The goal is to determine whether there is a
difference in the subjective well being of those providing care and the quality of elder
care provided by families using a team approach to caregiving as compared to families
using a primary caregiving approach. In addition, implications for supporting and
strengthening the caregiving functions of families will be addressed.

The following questions serve as a framework for inquiry:

1. What factors inﬂuence the selection of caregiving approaches?

2. Is there a relationship between the caregiving approach utilized and the
subjective well being of the caregiver(s)?

3. Is there a relationship between the caregiving approach utilized and the
quality of care provided to older adults?

4. What type of interventions or supports do family caregivers believe they need
in order to strengthen their caregiving capacity?

The importance of this project lies in its potential to provide a deeper
understanding of family caregiving systems as well as to illuminate the perceptions of
families regarding the types of supportive services they need in order to enhance their
caregiving capacities. Such knowledge could make a positive contribution to the quality
of life and well being of current and future generations of elders and their caregivers. In
addition, since the availability of family caregivers is a critical variable in the institutional
placement of older adults (Arendell and Estes, 1994), strengthening family caregiving
systems may help to delay or avoid the need for such placement, thereby reducing the
private and public costs of institutional care.

Furthermore, this project contributes to the development of family ecology theory
by testing the usefulness of basic theoretical constructs and terminology in relation to our
understanding of family functioning in late life. Speciﬁcally, the project helps to more
concretely deﬁne abstract concepts, such as how families perceive and/or deﬁne “quality
of care” and “well being”. In addition, the project tests the compatibility of family
ecology theory with ethnographic methods of data collection and a hermeneutic approach
to data analysis and interpretation.

This study is also valuable to the profession of social work because it holds
implications for the full range of practice with aging families, including micro, mezzo,

and macro levels of intervention. That is, it suggests strategies for working with older

adults and their families as well as needed changes within social policy and community-
based services. These implications will be discussed further in Chapter 5.

Limitations of this research project include the small sample size and the use of
purposive rather than random sampling procedures as well as informal participant
selection processes, which will be described in Chapter 3. Sufﬁcient demographic
information regarding the sample has been provided, however, to enable readers to
determine whether the ﬁndings may be applicable to other populations of interest.

Furthermore, this sample may be more reﬂective of families that are
knowledgeable about available services for elders or more aggressive in seeking out and
utilizing such services. This is supported by the fact that 91% of the families were .
utilizing at least one formal service at the time of the interviews. Their responses may not
be consistent with the experiences of families that are providing elder care without the
beneﬁt of formal services.

In addition, while every effort has been made to accurately represent the lived
experiences of all participants, there is likely to be some degree of distortion between
observation and representation. Denzin and Lincoln (1994) state, “There are no objective
observations, only observations socially situated in the worlds of the observer and the
observed...any gaze is always ﬁltered through the lenses of language, gender, social class,
race, and ethnicity” (p. 12). Consideration must be given to the fact that the researcher is
a middle class, middle aged, Caucasian female and the daughter of aging parents.
Furthermore, while conclusions are based primarily on the responses of families
participating in this project, they are also shaped by the clinical experience of the

researcher with hundreds of families facing similar circumstances. Provision for review

and comment by participants would considerably strengthen the trustworthiness of the
ﬁndings and conclusions that follow (Denzin and Lincoln, 1994; Tutty, Rothery, and
Ginnell, 1996). Unfortunately, this is not feasible at present due to time and ﬁnancial
constraints.

Deﬁnition of Key terms

The following list provides working deﬁnitions of key terms used in this project.

0 Family: A unit of intimate, transacting, and interdependent persons who
share some values and goals as well as resources and responsibilities and who have
sustained a commitment to one another over time (Ames, B., 11/1/98). The concept
includes family of origin, including parents, siblings, cousins; family of procreation,
including, spouses, children, grandchildren; and family of afﬁliation, including
companions, domestic partners, ﬁctive kin. A family system consists of the patterned
interactions of family members, including their communication, roles, beliefs, and rules.
Families can also be viewed as energy transformation systems that are interdependent
with natural, human built and social/cultural environments (Bubolz and Sontag, 1993).

0 Family ecology theory: A delimitation of human ecology theory that
focuses on the subsystem of the family. Units of analysis include the family ecosystem,
the transactions that link families to the broader environment, and the decisions that
families make in order to foster human development and adaptation (Bubolz and Sontag,
1993). Theoretical constructs of particular interest to this project include boundaries,
which distinguish the informal caregiving system from the environmental context. Such ,
boundaries are comprised of the “signiﬁcant human activity” (Bubolz and Sontag, 1993,

p. 432) of caregiving behaviors. In addition, the construct of adaptation is used to

describe how families adjust their interactions, both within and across system boundaries,
in response to the changing needs and abilities of family members. Finally, the construct
of dynamic interaction is used to describe the mutual exchange of energy between
families and their environments. While it is assumed that environments do not determine
human behaviors, it is also acknowledged that they often impose constraints as well as
provide opportunities to family systems (Bubolz and Sontag, 1993). Conversely, family
systems have the capacity to inﬂuence their environments in both positive and negative
ways.

0 Caregiving: A variety of activities addressing the survival needs of
dependent individuals of any age. Such activities may include the provision of
nourishment, shelter, medical care and social stimulation.

0 Elder care: Caregiving activities performed for the beneﬁt of older adults.
In this context, the term is used in reference to the care provided by families to their older
members.

0 Caregiving models: Strategies or approaches used by families to meet the
care needs of older adults. Such models include the primary caregiving approach as well
as partnership and team models of caregiving.

o . Ethnographic methods: An interpretive, naturalistic approach to inquiry
that focuses on the daily experiences of a distinct group of people and the meanings they
ascribe to those experiences.

These deﬁnitions will be further elaborated in the following chapters.

Theoretigl Oﬁmgtion

Family ecology, as described by Bubolz and Sontag (1993), provides the
theoretical orientation for this project. As stated in the preceding section, family ecology
theory represents a delimitation, or subcategory, of human ecology theory. While human
ecology encompasses the full range of human populations, the focus of family ecology is
the subsystem of the family. The broad scope and multilevel framework provided by
family ecology theory offer the ﬂexibility necessary for analysis of the complex
relationships found within family caregiving systems. Theoretical constructs such as
boundaries, adaptation, and dynamic interaction (described in the previous section) are of
particular interest to this project. In addition, family ecology theory is compatible with an
emphasis on the person/environment interface, which has been the traditional focus of
social work practice.

Basic assumptions of the theory include the interdependence of parts and wholes
within ecosystems. In addition, families are viewed as dynamic, adaptive systems with
the capacity modify their environments. Furthermore, it is assumed that families interact
with multiple environments, including natural, human-built, social/cultural environments
in order to access essential resources. Resources are deﬁned as “energy and information
converted into speciﬁc forms for attaining goals” (Bubolz and Sontag, 1993, p. 434).
Resources utilized by family caregiving systems include skills, knowledge, commitment
and cohesion as well as time and money.

Interactions between families and their environments are guided by two sets of
rules: the “laws of nature”, such as the laws of thermodynamics, and human-derived

rules, like social norms. These rules inﬂuence the allocation of resources, role

expectations and the distribution of power within families and society. An ecological
analysis must address interactions at each of these levels (Bubolz and Sontag, 1993).

Furthermore, family ecology theory assumes that while environments do not
determine human behavior, they do impose limitations and constraints as well as provide
possibilities and opportunities (Bubolz and Sontag, 1993). It also acknowledges that
families have varying degrees of control with respect to environmental interactions and
that these variations are often related to ethnicity, gender, and/or economic status. Berger
and Luckman (1966) have observed that “knowledge must always be knowledge from a
certain position” and that “the object of thought becomes progressively clearer with [the]
accumulation of different perspectives on it” (p. 10). This project, therefore, explores
family caregiving systems ﬁ'om multiple perspectives with respect to ethnicity, gender,
and/or economic status.

Values underlying family ecology include the concept of human betterment as
described by Boulding (1985). Betterment is deﬁned as a system change that is evaluated
as being for the better or that increases the ultimate good. Boulding identiﬁed four virtues
that contribute to the ultimate good. These include economic adequacy, justice, freedom,
and peacefulness. Bubolz and Sontag (1993) also maintain that the value base of family
ecology is grounded in the interdependence between human betterment and
environmental quality. These values are consistent with the values expressed by the Code
of Ethics of the National Association of Social Work, such as service, social justice, and
the importance of human relationships as well as the dignity and worth of individuals

(National Association of Social Workers, 1996).

Finally, farmly ecology. recognizes the legitimacy and utility of the “hermeneutic
philosophy of science perspective, grounded in interpretive rationality” (Bubolz and
Sontag, 1993, p. 427). The aim of this perspective is to achieve intersubjective
understanding and mutual agreement on meaning, despite cultural differences. The
subjectivity of experience and knowledge on the part of both the researcher and research
participants is acknowledged. Ideally, participants are active co-partners with the
researcher as they reﬂect on their experiences and respond to the interpretation of those
experiences. The hermeneutic perspective is highly compatible with the ethnographic
design of this project.

The following chapter provides a thorough, although not exhaustive, review of
scholarly literature addressing the topic of elder care provided by families. Chapter three
describes the methodology used to explore the hypothesis and research questions outlined
in the preceding section. Chapter four presents the results obtained through participant

contacts and Chapter ﬁve discusses the conclusions and implications of the project.

Chapter 2
Literature Review

Despite the common misperception that Americans abandon their elders to
institutional care, a number of studies have found that families actually provide the vast
majority of elder care (Brody, 1981, 1985; Cantor, 1983; McAuley, Jacobs, and Carr,
1984; Kaye and Applegate, 1990; Coward, Horne, and Dwyer, 1992). It has been
estimated that approximately 22.5 million families are currently providing assistance to
older relatives or ﬁiends (McFadden, 1999). A survey conducted by the National
Alliance for Caregiving (1997) found that in almost one in four households, at least one
member was providing care to an older adult or had done so within the past twelve
months. While caregiving chores consume an average of four hours per day, one in ten
caregivers provide twenty-four hour care (Atchley, 1994). It also should be noted that
women comprise more that 80% of family caregivers (Hooyman, 1992). Of these women,
65% are spouses and 73% are themselves over 65 years of age (Levine, 1997).

It is likely that the need for elder care will increase in the future as the population
of older adults continues to expand. Estimates project that the number of elders needing
assistance with activities of daily living may grow from the current 7.3 million to 14
million by 2020, and to 24 million by 2060 (U .8. General Accounting Ofﬁce, 1996).
Furthermore, this increase in the population of care recipients is occurring simultaneously
with demographic trends that reduce the number of available caregivers. These include
decreased birth rates, resulting in fewer individuals per generation, as well as increased

female participation in the public labor market (Kain, 1990). In addition, these trends are

10

not limited to the United States but can be observed in virtually every country throughout
the world (Climo, 2000).

It has been noted that scholarly literature addressing family caregiving has
undergone phenomenal expansion in recent decades (Kahana, Biegel, and Wykle, 1994).
For example between 1987 and 1991, there was a 200% increase in caregiving articles
included in Sociologigal Abstgzjs and an increase of 307% in caregiving articles cited in
_Mgdl_i_r;e_ although the total number of articles abstracted in these databases increased by
less than 10%. Such proliferation has led some scholars to question the merits of further
scientiﬁc investigation of the topic (Zarit and Toseland, 1989; Kahana, Biegel, and
Wykle, 1994). However, close scrutiny of the existing literature reveals signiﬁcant
limitations and gaps in knowledge. For example, the majority of articles offer a very
narrow perspective, focusing on “the ill effects on the designated family caregivers of
patients suffering from a speciﬁc disease”, such as Alzheimer’s Disease. (Kahana,
Biegel, and Wykle, 1994, p. xiv).

A recent study by Meshefedjian, McCusker, Bellavance, and Baumgarten (1998)
illustrates this type of research. These scholars examined variables associated with
increased severity of depressive symptoms among 321 primary caregivers of dementia
patients living in Canada. Primary caregivers were deﬁned as “the person who was
ordinarily responsible for day-to-day decision making and care of the index subject” (p.
248). This deﬁnition included both paid and unpaid caregivers.

Depressive symptoms of caregivers were measured by the Center for
Epidemiological Studies Depression Scale (CES-D). Multiple regression analyses

indicated that a higher CES-D score was signiﬁcantly associated with the following three

11

caregiver characteristics: being the spouse or child of the patient, ethnicity “other” than
English or French Canadian, and lower education. In addition, patient characteristics,
such as greater behavioral disturbances and moderate-to-severe functional impairment,
were also associated with higher CES-D scores among caregivers. The investigators
acknowledged, however, that “...a substantial amount of variance in caregiver depression
was not explained by the risk factors in our model” (Meshefedjian, McCusker,
Bellavance, and Baumgarten, 1998, p. 252).

This type of research, although well designed, tends to decontextualize the
caregiving experience. While the investigators were unable to fully explain the variance
in caregiver depression, they did suggest that it might be due to the availability, or lack
thereof, of caregiver supports and opportunities for sharing caregiving duties. However,
this explanation could not be veriﬁed due to the narrow focus on primary caregivers and
the lack of data regarding the caregiving system.

A second example of research focusing on the detrimental effects of caregiving is
provided by Ho., Weitzman, Cui, and Levkoff (2000). These scholars expanded upon the
caregiver stress model developed by Pearlin, Mullan, Semple, and Skaff (1990) by
adding a new measure for quantifying non-caregiving stress. The sample of 117 primary
caregivers was composed of individuals from four ethnic groups (African American,
Chinese, Latino, and Caucasian) living in the Boston area. Each participant was
responsible for the care of a family member with dementia. The hypothesis investigated
was that caregivers have greater need for services when presented with stressors
associated with caregiving. The investigators concluded that non-caregiving stress, or

stress associated with other responsibilities, was also a powerful predictor of umnet

12

needs. This was particularly evident among Chinese and Latino caregivers. Language
barriers and acculturation issues were believed partially to account for differences in
service utilization among these caregivers. However, the study was unable to account for
variability within the ethnic groups. Such variability may relate to informal supports and
shared caregiving arrangements available to some participants but not to others. Again,
due to the narrow focus on primary caregivers, data regarding the caregiving system was
not collected so‘this interpretation cannot be veriﬁed.

These examples support the observation made by Kahana, Biegel and Wykle
(1994) that there is a gap in knowledge regarding the process and context of caregiving.
They state, “caregiving generally has been explored in terms of individual care providers
without regard to the broader social system within which caregiving interactions are
embedded” (p. xv.). Finally, these scholars assert that ecological approaches permit the
consideration of previously neglected areas of the person/environment interface.

Such an approach was utilized by Tebb and J ivanjee (2000) in their study of
caregiver isolation. This project used qualitative methodsrto explore the effects of social
isolation among eight female caregivers whose spouses had Alzheimer’s Disease. The
aim of the project was to increase understanding of the multiple dimensions of caregiver
isolation as well as the complex factors that contribute to it. The investigators were able
to describe the interaction between individual and enviromnental factors, and they
concluded that the biophysical dimension emerged as a primary isolating theme. That is,
isolation increased as the physical health of caregivers deteriorated, resulting in what has

been called the “hidden patient” (p. 65.).

13

Although this study produced an elegant ecological model of caregiver isolation,
it did not look beyond the primary caregiver to identify potential sources of support and
assistance within the kinship and/or friendship network. Therefore, it reinforces the
assumption that the spouse should assume all caregiving functions despite obvious
negative effects.

Although the primary caregiving model has long dominated research on family
caregivers, alternative models can now be found in the research literature (Keith, 1995;
Piercy, 1998; and Pyke and Bengtson, 1996). These include caregiving partnerships and
caregiving teams or networks. In the primary caregiving model one person, usually a
spouse or a daughter, assumes all caregiving responsibilities. The partnership model, in
contrast, usually involves two siblings who make relatively equal contributions to
caregiving. The third model, team caregiving, involves multiple caregivers who not only
share authority and responsibility, but also “perceive themselves to be organized in a
planned and integrated manner” (Keith, 1995, p. 184.). Caregiving teams may be
composed of an elderly spouse, adult children and their spouses or companions,
grandchildren, and other relatives as well as close neighbors and family ﬁ'iends. As with
other teams, participants function in a variety of roles and coordination of efforts is
essential in order to achieve mutual goals.

Since both the partnership and team models involve multiple caregivers and
similar dynamics, they have been combined in a single category referred to as team
caregiving or caregiving networks for the purposes of this project. The term, caregiving

team, has been used to refer to participant families who identiﬁed multiple informal

l4

caregivers via the participant survey or during personal interviews (see Chapter 3 for a
detailed description).

The studies cited above that described alternatives to the primary caregiving
model were all exploratory in nature. Some suggest factors such as ethnicity or family
history that may inﬂuence the type of caregiving model utilized by a given family.
However, none of these studies provide evidence of qualitative differences among the
models; that is, whether one model is more likely than the others to result in positive
outcomes for both care recipients and care providers. For example, Pyke and Bengtson
(1996) identiﬁed and explored the dimensions of individualist and collectivist systems of
family care. These dimensions include variations in family beliefs and behaviors
regarding interdependence/independence, attachment/separation, commitment/autonomy,
and hierarchy/egalitarianism. In their discussion of the implications of the transfer of
caregiving responsibility ﬁom formal, public systems to informal, family systems, Pyke
and Bengtson (1996) predicted that since collectivist families tend to be less dependent
on formal, public services they are better able to cope with this transfer of responsibility.
They did not, however, speciﬁcally address the issues of quality of care or caregiver well
being.

In addition, Piercy (1998) explored the meanings of ﬁlial and familial
responsibility. Her ﬁndings suggest that, while ﬁlial responsibility focuses on the older
parent/adult child dyad, familial responsibilities encompass other family members as well
as the older parent. In addition, she found that it is not uncommon for families to share
the responsibility of caregiving among several members. However, implications for

quality of care were not addressed, although she did advocate that future research explore

15

the effects of assistance provided by family networks for both the care recipient and the
caregiver.

Cicirelli (2000) also examined the construct of ﬁlial responsibility by conducting
structured interviews with ﬁfty-three pairs of adult children and aging parents. The
questionnaire included measures of parents’ physical and emotional health status and
cognitive functioning as well as the caregiving behaviors of adult children. Data analysis
resulted in the identiﬁcation of three stages in ﬁlial role development that culminate in
caregiving behaviors The ﬁrst stage, concern, was characterized by increased awareness
of the growing frailty of an aging parent. Behaviors observed in this stage included
increased telephone contacts, more ﬁequent visits, and monitoring for additional signs of
declining health. The second stage, urging, occurred when symptoms of declining health
were directly observed. Behaviors of this stage included advice giving and admonishing
the parent to address the symptoms in a direct manner. The ﬁnal stage, action, occurred
only after symptoms affected the functional abilities of the parent. Behaviors in this stage
included various degrees of assistance with daily activities and special needs. These
ﬁndings suggest that entry into the role of “caregiver” is a gradual process that begins
with awareness of need or potential need. However, the design, which included the
perspectives of an aging parent and one adult child who they identiﬁed as “the child to
whom they would turn for help, if needed” (p. 170), tends to reify the concept of the
primary caregiver.

Sherrell, Buckwalter, and Morhardt (2001) have also conceptualized ﬁlial
maturity from a developmental perspective. These scholars maintain that ﬁlial maturity

occurs when adult children learn to view their parents in an objective manner and can

16

engage in effective decision-making regarding when to provide care, when to allow
parents to maintain autonomy and when to ask for outside help. Based on a longitudinal
case study with a 44-year-old woman who was the primary caregiver of her father, a
dementia patient, the investigators concluded that parent-care may provoke a revisiting of
the separation-individuation task and result in ﬁlial maturity. They also argue that
ignoring the history and complex dynamics involved in caregiving relationships results in
misconceptions regarding the nature of this experience for both caregivers and recipients
of care. Although this study perpetuates a narrow focus on dementia care provided by a
single individual, it does underscore the complexity of caregiving relationships and
suggests the possibility that they can be growth enhancing, in contrast to the emphasis on
negative effects previously mentioned.

Finally, Keith (1995) examined the division of caregiving labor within families
and identiﬁed three types of caregiving systems. She also identiﬁed several family
characteristics, such as the number and gender of offspring, which may contribute to the
development of a speciﬁc type of caregiving system. For example, within her sample, she
found that in the case of brother/sister dyads, the sister was always viewed as the primary
caregiver for elderly parents. However, in families with two or more daughters, there was
a greater incidence of shared caregiving arrangements.

These ﬁndings are consistent with those presented by Matthews and Rosner
(1988). However, in addition to family size and gender composition, these scholars
suggested that the nature of ties among siblings and parents as well as commitments
siblings had to those outside their family of origin, such as employers, also inﬂuence the

type and level of assistance provided to older parents. Matthews and Rosner also

17

discussed the inﬂuence of birth order. They noted that in some families, “being the oldest
carried certain expectations of routine involvement in parent care” (p. 190). In other
families, however, the inﬂuence of sibling seniority was mitigated by other factors, such
as the “favorite child” status of a younger sibling.

The process of caregiver selection was also explored by Ikels (1983) among
families of Chinese and Irish ancestry living in Boston. The aim of her research was to
assess the relative value of certain factors in predicting patterns of family support for
older adults. She identiﬁed certain “rules” that appeared to transcend cultural differences.
That is, she found that probable caregivers could be predicted, in most cases, on the basis
of a few variables, regardless of ethnic origins. These variables were the marital status of
the care recipient (if available, spouses were the most likely caregivers), and the sex and
geographic proximity of adult children at the time when elder care was required.

lkels (1983) also found that cultural values inﬂuenced the process “primarily with
reference to the sex of the child expected to assume the caretaking role...Irish parents will
look ﬁrst to their daughters while Chinese parents will look ﬁrst to their sons” (p. 492). In
both groups, however, women usually provided the hands-on, physical care. Similar
patterns also have been observed among Korean families (Levande, Herrick, and Sung,
2000)

In summary, the following categories of factors inﬂuencing caregiver selection
have been identiﬁed (Ikels, 1983). They are listed in the approximate order of their power

to predict caregiver selection.

18

0 Demographic imperatives: The caregiver is the only child, the only child
of the preferred sex, the only geographically proximate child, or the only unmarried
child.

0 Antecedent events: These include special obligations of reciprocity or the
gradual emergence of caregiving. This usually occurs while the child is still living at
home, as in the case of early widowhood.

o Situational factors: The caregiving child is the least inconvenienced or is
highly motivated by affection for the care recipient. It should be noted, however, that
other scholars have disputed the importance of affection as a factor in caregiver
selection (Silverstein, Parrott, and Bengtson, 1995).

Although these and other studies have added much to our understanding of how
caregiving labor is distributed within families, implications for quality of care and
caregiver well being remain unaddressed. In addition, excessive emphasis on the
detrimental effects of primary caregiving has resulted in deﬁcit focused research.

Berg-Weger, Rubio, and Tebb (2000a; 2000b; 2001 , p. 263) have recently
challenged this deﬁcit-based focus in caregiving research. These scholars maintain that
such a focus produces deﬁcit-based interventions rather than empowering strategies.
Their work foregrounds positive aspects of caregiving, such as increased satisfaction and
self-respect, which have also been observed by others (Horowitz, 1985a). They
incorporated a Caregiver Well Being Scale (Tebb, 1995) into a survey mailed to
caregivers of chronically ill family members. Well being was conceptualized as “the
caregiver having at least some periodic states of security and structure within the

turbulence of life” (Berg-Weger, Rubio, Tebb, 2000a, p. 163).

19

The analysis of 142 surveys suggested that caregiver well being is
multidimensional, having both positive and negative components. It also reﬂects both
caregiver and care recipient characteristics, such as residential arrangements and
relationship to care-recipient. For example, it was reported that adult children scored
higher on perceived well being than did spousal caregivers. It was also noted that an
increased sense of inner strength was reported by many caregivers, but was more
frequently reported by adult children than by spouses.

The well being of spousal caregivers was also addressed by Kramer and Lambert
(1999). In one of very few studies focusing on male caregivers, these scholars analyzed
longitudinal data from the National Survey of Households in relation to older husbands
who had assmned the responsibility of caring for a disabled spouse. Their ﬁndings
suggested that when compared to non-caregiving peers, husbands who entered the
caregiving role demonstrated signiﬁcant differences, including a decline in marital
happiness and a decrease in psychological well being. This stands in marked contrast to
the increase in well being reported in the studies that included adult children as well as
spousal caregivers.

Very little is known, however, about the potential beneﬁts and risks to caregiver
well being associated with alternatives to the primary caregiving model or how best to
support families utilizing these alternatives. Toseland and McCallion (1997), in their
meta-analysis of caregiver intervention research, reviewed eighty-ﬁve studies conducted
from 1979 to 1997. Interventions targeting primary caregivers were dominant in this
analysis, underscoring the assumption that a single individual is usually responsible for

care. However, sharing the responsibility for caregiving via caregiving networks or teams

20

may reduce the burden of care, minimize the detrimental effects on individual caregivers,
and perhaps result in improvements in caregiver well being as well as in the quality of
care provided. On the other hand, the additional strain of joint decision-making and
coordinating the efforts of team members may offset these advantages.

To summarize, despite the rapid expansion of family caregiving research in recent
decades, gaps in knowledge regarding the process and context of caregiving remain.
Speciﬁcally, little is known about alternatives to the primary caregiving approach,
including the beneﬁts and risks associated with such alternatives. Many of the scholars
cited in this review of the literature have called for adding qualitative methods to the
more traditional quantitative approach to family caregiving research in order to deepen
our understanding of the complex relationships involved. The study reported here
responds to those calls by addressing the concepts of quality care and caregiver well
being from the perspectives of both care recipients and caregivers. In addition, the quality
of care provided by families utilizing both team and primary caregiving approaches is

examined. The methods used to explore these issues are discussed in the following

chapter.

21

Chapter 3
Methodology

As stated in Chapter 1, this project explores systems of family care for elders. The
aim is to identify caregiving systems that preserve the well being of caregivers while
maintaining an acceptable quality of care for older adults. The goal is to determine
whether there is a difference in the quality of elder care provided by family caregiving
teams as compared to the family primary caregiving approach. The subjective well being
of those providing care within each caregiving system is also examined. Finally,
implications for supporting and strengthening the caregiving functions of families are
addressed.

Geertz (1973) stated that ethnographic analysis “. . .is not an experimental science
in search of law but an interpretive one in search of meaning” (p. 5). Furthermore, it has
been said that ethnography is principally deﬁned by its subject matter — ethnos, or culture
— rather than by its methodology (Chambers, 2000). Ethnography is one of several
methods of inquiry utilized within the broad domain of qualitative research.

According to Denzin and Lincoln (1994), “Qualitative research is multi-method in
focus, involving an interpretive, naturalistic approach to its subject matter. This means
that qualitative researchers study things in their natural settings, attempting to make sense
of, or interpret, phenomena in terms of the meanings people bring to them” (p. 2).
Qualitative research can be distinguished from quantitative research in its epistemology,
its forms of representation, and its evaluative criteria.

For example, Tutty, Rothery, and Grinnell (1996) discuss the importance of

establishing “trustworthiness” when conducting qualitative research. They suggest that

22

the following concerns must be addressed in order to establish trustworthiness: credibility
(truth-value), transferability (applicability), dependability (consistency), and
conﬁrrnability (neutrality). Furthermore, they point out that these concerns are only
roughly equivalent to the quantitative concepts of internal validity, generalizability,
reliability, and objectivity.

The term, ethnography, represents both a method of data collection and a style of
writing, focusing on the culture or “shared meanings” (Chambers, 2000, p. 852) of a
distinct group of people. Although ethnography originally grew out of the interests of
Westerners in the cultures of “primitive” peoples, it now encompasses a “. . .vastly
expanded subject matter, limited only by the varieties of experiences in modern life...”
(Denzin and Lincohr, 1994, p. 42). In addition, classical ethnography required the total
immersion of the ethnographer in the culture of the other. Although this project does not
utilize such immersion, the writer will attempt to provide a rich description of caregiving
experiences and to represent as accurately as possible meanings ascribed to those
experiences by both caregivers and care recipients.

The following questions serve as a framework for inquiry:

1. What factors inﬂuence the selection of caregiving approaches?

2. Is there a relationship between the caregiving approach utilized and the
subjective well being of the caregiver(s)?

3. Is there a relationship between the caregiving approach utilized and the
quality of care provided to older adults?

4. What type of interventions or supports do family caregivers believe they need
in order to strengthen their caregiving capacity?

23

Data Collection

These questions were explored via semi-structured interviews with families
actively engaged in the provision of eldercare. The researcher conducted interviews with
care recipients, whenever feasible, as well as with all available family caregivers. A
broad deﬁnition of family was utilized for the purpose of this study, including family of
origin, family of procreation, and family of afﬁliation. While recognizing that formal
service providers often play an important role in caregiving systems, they were not
interviewed for this study (1). Utilization of such services by participating families was
documented, however.

This study seeks to deﬁne and assess quality of care from the perspectives of
participants. Rather than using an “objective” measure of quality, the subjective
perceptions of care recipients and caregivers were elicited during interviews. The
elements of quality care identiﬁed in a previous study (Brewer, 2000) were reviewed with
care recipients to introduce the topic and provide a basis for comparison. In addition,
questions regarding the adequacy of care and level of satisfaction with care were
included. Finally, participants were given the opportunity to identify areas for

improvement in their situation.

(1) In a previous project, “A Qualitative Study of Family Care Models for Older
Adults”, (Brewer, 2000) focus group interviews with formal service providers were
utilized to explore similar issues.

24

Sampling Procedures

A purposive sample of twenty-two families was recruited from two sources in
order to reduce the potential bias resulting from the use of a single recruitment site. In
addition, it was anticipated that adding a second recruitment site would result in more
participant diversity in terms of ethnicity and socioeconomic status. The investigator met
with agency staff at each recruitment site in order to provide an overview of the project.
The overview included the following participant selection criteria:

1. Care recipients must be age sixty or over.

2. There must be at least one family caregiver, although this person need not live
in the same household with the recipient.

3. Participants may not be current or former clients of the investigator.

4. Participants may not be referred to the investigator for clinical services for at

least six months following their participation in the project.

Criteria number one was selected as an indicator of the “older adult” status of care
recipients. While it is acknowledged that chronological age alone is a poor predictor of
functional ability, age sixty has been designated the age of eligibility for most services
funded by the Older Americans Act. Although scholars have suggest an earlier age would
be more appropriate among some ethnic groups, such as Native Americans (Stanford and
Schoenrock, 1992), ﬁrnctional limitations resulting in the need for long term care do not
usually occur prior to age sixty.

Criteria number two was included in order to ensure access to at least one family
caregiver since family caregiving is the primary focus of the study. It was anticipated that
providing for the participation of non-residential caregivers would allow for a broader

perspective of caregiving systems. Criteria three and four were necessary in order to

25

avoid conﬂicts of interest and potential bias since the investigator also engaged in clinical
social work practice in the same geographic area at the time of the study.

In addition to the criteria discussed above, the investigator provided staff at each
recruitment site with a Memorandum of Introduction, explaining the nature of the project
(see appendix #1). Staff at each site were then asked to distribute these memos to
appropriate patients and/or caregivers. Staff also were asked to relay to the investigator
the name of a family representative, telephone number and/or address for each family that
indicated an interest in participating in the project. The investigator then contacted the
family representative to schedule an initial meeting. At this meeting, a detailed
explanation of the project was provided and the appropriate consent forms were
completed (see Appendix #2). Additional consent forms were completed, as necessary,
for each family member interviewed.

The recruitment sites referred a total of twenty-six families. Of these, twenty-two
families (86%) actually participated in the project. Of the four families that were referred
but did not participate, three dropped out due to scheduling conﬂicts and the fourth
family representative chose not to participate due to her concern that the interview might
cause emotional distress for her elderly mother.

It should be noted that participant selection occurred on at least two levels, in
addition to the selection criteria designed by the researcher. First, staff at the recruitment
sites were able to select families from among their contacts that they believed not only
met the criteria speciﬁed by the researcher but that would be most likely to participate in
the project. In addition, each family representative approached about the project had the

opportunity to refuse participation or to withdraw from participation at any point.

26

This selection process probably resulted in a pool of participants that were
relatively comfortable and conﬁdent regarding the caregiving practices of their families.
On the other hand, families that were struggling to fulﬁll their caregiving functions may
have been less inclined to participate. This, in turn, could skew the ﬁndings in a more
positive direction than may be true for the general population.

The Care Management program of Region IV Area Agency on Aging (AAA)
recruited twenty families that subsequently participated in the project. This program is
recognized at both the state and national level for its work in the management of in-home
care for older adults who are at risk of nursing facility placement. In 1999, Care
Management staff worked with over 1000 families providing care to elderly relatives. In
addition, Intercare Community Health Network (ICHN) recruited two participating
families. ICHN is a community and migrant health center that provides primary health
care services at several clinics in Allegan, Berrien, Cass, and Van Buren counties as well
as medical outreach to area migrant labor camps. Individuals utilizing the services of
ICHN are predominantly low-income Hispanics and Aﬁican Americans.

The two families recruited by ICHN were compared to the families recruited by
AAA to determine whether there were substantial differences among the families. They
were similar in most respects, with one exception. One of the ICHN participants had a
caregiving system constituted entirely of friends and neighbors. This elderly, Native
American woman had no children of her own and her only living relatives, a brother and
two elderly nieces, were unable to provide needed care. After an episode of ﬁnancial
exploitation, she turned to her friends for assistance. Since the families recruited by the

two sites were similar in most respects, data were analyzed and reported as a single unit.

27

Larticjgant Interview Procedures

Separate semi-structured interview guides were developed for care recipients and
caregivers (see appendix #3.A and #3.B). This format was selected because it provides
moderate structure as well as considerable ﬂexibility (Tutty, Rothery, and Grinnell,
1996). Interview topics included identiﬁcation of the family caregiving system, the
history of family caregiving relationships, perceived changes in quality of life and
subjective well-being over time, quality of care ratings, current utilization of formal
services and perceived need for additional supports.

An effort was made to interview the care recipient and caregiver separately.
However, in many cases this was not feasible due to the size and arrangement of living
quarters, communication deﬁcits, and other factors. Fifteen care recipients were
interviewed in the presence of at least one caregiver. Three additional care recipients
were interviewed separately and four care recipients could not be interviewed due to the
severity of their cognitive limitations. It should be noted that the responses of both parties
were probably affected when joint interviews occurred. For example, caregivers may
have been less candid regarding the effects of caregiving on their personal well being
when the care recipient was present during the interview. On the other hand, care
recipients may have been reluctant to acknowledge poor quality care in the presence of
caregivers.

The investigator conducted all interviews. Participants were offered a cash
payment of $10.00 per interview. Several of the participants refused to accept this

payment. Some explained that they did not need to be compensated for their time but that

28

they wanted to support the project in the interest of better understanding the experiences
of family caregivers.

Of the thirty-three caregivers interviewed, twenty-nine were interviewed in
person. Of those, sixteen were interviewed in the presence of the care recipient and
thirteen were interviewed separately. Due to scheduling constraints, four caregiver
interviews were conducted via telephone. Nine additional caregivers were identiﬁed by
family representatives but were not available for interviews. In the case of telephone
interviews, detailed notes of the conversation were made during the interview and
subsequently transcribed by the investigator. All other interviews, with one exception,
were audio taped and transcribed verbatim by Ofﬁce Services staff at Michigan State
University. The transcripts were subsequently spot-checked for accuracy by the
investigator. In the exception noted above, the caregiver agreed to be interviewed but
refused to be audio taped. The procedure used for telephone interviews was also followed
in this case.

Participant Survey Procedures

In addition to the interviews, a representative for each family was asked to
complete a brief participant survey (see Appendix #4). These individuals were self-
selected by the participating families. Information collected via the survey included the
age and gender of the care recipient as well as ages and genders of all family members
involved in the caregiving system. An estimate of the hours per week of care provided
and the nature of the caregiving tasks performed also was obtained. In addition, an

estimate of the economic status of the care recipient and the ethnic identity of the

29

caregiving system was requested. Finally, the nature and severity of the care recipient’s
disability was docrunented along with the duration of the current caregiving system.
M253

SPSS was utilized to analyze data collected via the participant survey in order to
generate descriptive statistics for the sample. Such data is necessary in order to permit
potential readers to assess the ﬁt between the sample and other populations to which the
ﬁndings may apply (Meloy, 1994).

Interview transcripts were analyzed using Non-numerical Unstructured Data
Indexing, Search, and Theorizing (NUD*IST) software, developed by Qualitative
Solutions and Research. NUD*IST contains both a document system that facilitates
management and exploration of project documents, such as interview transcripts, and an
index system for storing and sorting concepts, categories, and patterns as they emerge
from the data. Both systems can be searched and queried to support data interpretation
and theory building.

The results obtained from the data collection and the data analysis procedures
described above will be discussed in detail in Chapter 4. First, responses to the participant
survey will be presented and compared to data obtained ﬁom national surveys. This
information provides the background necessary for informed decisions regarding the
applicability of project ﬁndings to other populations of interest. Such a comparison offers
a means of locating this study within the broader national discourse that addresses
informal long-term care for older adults by identifying areas of convergence and
divergence between the characteristics of study participants and those of caregivers

represented by randomly selected national survey participants. Chambers (2000) has

30

noted that this practice “...seems particularly relevant to applied research...” (p. 858).
Finally, responses obtained during participant interviews will be presented, utilizing the

framework for inquiry described above.

31

Chapter 4
Results
P_articipa_rnt Survey
Description of Care Recipient Characteristics

A self-selected representative from each of the twenty-two families participating
in the study completed the participant survey. The results of the survey were as follows.
The average age of care recipients participating in the project was 77 (N=22). Ages
ranged from 62 to 93 years. Most (70%) of the care recipients were women. This is not
unusual given the longer life expectancy of women. Since they live longer and experience
more chronic illness in late life, older women are frequently in need of long-term care.
These demographic facts are also reﬂected in the higher proportion of women residing in
long-term care facilities (Arendell and Estes, 1994).

Caregivers were asked to indicate whether the care recipient’s disabilities
included physical limitations only, cognitive limitations only, or a combination of
physical and cognitive limitations. Their responses indicated that 50% (11) of the care
recipients had physical limitations only, approximately 12% (3) had cognitive limitations
only, such as Alzheimer’s disease, and 38% (8) had a combination of physical and
cognitive limitations, resulting primarily from strokes.

Caregivers also were asked to rate the care recipients’ level of disability. The
following guidelines were provided to assist caregivers with this rating. Maximum
disability indicates that the care recipient is essentially bedridden and may need
assistance to turn in bed. Moderate disability indicates that the care recipient is able to

transfer from bed to chair with assistance and needs substantial assistance with activities

32

of daily living (ADL). Minimal disability indicates that the care recipient primarily
requires supervision as well as some assistance with ADL. Of the twenty-two care
recipients, approximately 30% (7) were rated by caregivers as having a maximum level
of disability, 50% (11) were rated as having a moderate level of disability, and 20% (4)
were rated as having a minimal level of disability.

Caregivers also were asked to rate the economic status of care recipients, based on
the following scale: lower (less than $12,000 annual income), middle (between $12,000
and $24,000 annual income), upper (more than $24,000 annual income). The majority
(14) of care recipients in the sample were in the lower economic group, according to
caregiver ratings. Approximately 20% (5) were in the middle economic group and only
one was in the upper economic group. This distribution is not surprising given that
programs provided by both recruitment sites target low-income populations.

Finally, the ethnic identity of each caregiving system was documented. Based on
caregivers’ ratings, 77% (17) of the participating families were Caucasian, 14% (3) were
Aﬁican American, and 9% (2) were Native American. Unfortunately, no Hispanic
families were represented in this study although an attempt was made to access this
population by including Intercare Community Health Network as a participant
recruitment site.

Data resulting from the participant survey are comparable to data drawn from a
national survey sponsored by the National Alliance for Caregiving and the American
Association of Retired Persons (NAC/AARP, 1997). That study was based on telephone
surveys with a nationwide randomly selected sample of caregivers. A total of 1,509

English-speaking family caregivers participated. To be included in the study, caregivers

33

had to be at least 18 years old. In addition, they had to be either currently providing
informal care or having done so within the previous twelve months. There were,
however, no stipulations regarding where the care recipient lived nor the amount,
duration, or frequency of care provided. The following table (Table 1) provides a
comparison of the age and gender of care recipients participating in this study to data
drawn from NAC/AARP survey.

Table 1: Comparison of Study Sample to National Survey Data*
Regardin , Age and Gender of Care Recipients

 

 

 

 

 

 

Variable Study Sample National Survey
Average age of care recipient 77 (rangez62-93) 77
Gender of care recipient 70% Female “Typically female”: 31%
mothers, 9% mother-in-laws,
12% grandmothers

 

*National Alliance for Caregiving and American Association of Retired Persons (1997)
Table 2 provides a comparison of the level of disability of care recipients

participating in this study, as reported by their caregivers, and the level of care provided
to respondents of the NAC/AARP (1997) survey. That survey utilized the Level of Care
Index, which is based on hours of care per week and types of care provided. For purposes
of this comparison, a “level of care” based on the types of care provided and the hours of
care per week, as reported by caregivers, was assigned to each care recipient participating
in this study. Generally, a higher level of care indicates a higher level of disability.

Table 2: Comparison of Study Sample to National Survey Data
Regarding Level of Disability/Level of Care

 

 

 

 

 

Level of Disability: Level of Care : Level of Care:

Participant Survey Study Sample National Data
Minimal 20% (n=4) 23% 40%
Moderate 50% (n=11) 14% 19%
Maximum 30% (n=7) 63% 36% *

 

 

 

* Total less than 100% indicates missing data

34

 

 

This comparison suggests that the care recipients participating in this study are
more disabled and therefore require a higher level of care than the care recipients
represented in the national survey. This is likely due to the sampling pool since the Care
Management Program, one of the recruitment sites, is targeted to individuals at risk for
nursing home placement. It should be noted, however, that many caregivers had difﬁculty
estimating the number of hours they spent providing care each week. For many, the
number of hours varied from day to day based on changes in the care recipient’s level of
ﬁmctioning and the availability of formal support services. Most primary caregivers
perceived themselves to be “on-call” twenty-four hours a day, seven days per week. The
implications of this perception of constant responsibility for the well being of care
recipients will be discussed in the following chapter.

Description of Caregiver Cha_racteristics

In addition to documenting the demographic characteristics of care recipients,
information regarding caregivers also was collected via the Participant Survey. This
information can also be compared to national survey data (NAC/AARP, 1997). For
example, Table 3 compares the age, gender, and duration of caregiving for caregivers
participating in this study with caregivers represented by the NAC/AARP survey.

In addition, a second study, the National Survey of Families and Households
(1992) provides additional perspective regarding the average number of caregivers per
care recipient, a topic not addressed by the previously mentioned survey. This data
suggests that it is not uncommon for more than one person to be involved in the provision

of care within a caregiving system.

35

Table 3: Comparison of Study Caregivers with Caregivers Represented by
National Survey Data (NAC/AARP, 1997)

 

 

 

 

 

 

Variable Study Sample National Survey
Age of Caregiver 57 (range: 30-86) 46
Gender of Caregiver 68% Female; 73% Female;

32% Male 27% Male

Average Duration of 4% < 1 mo.; 18% 7 mos. to 1 yr.; 4.5 years
Caregiving 77% > 1 yr.
Average No. Of Caregivers 1.9 1.7 *
per Care Recipient

 

 

 

* From National Survey of Families and Households (1992)

This comparison suggests that caregivers participating in this study are
considerably older than caregivers represented by the national survey. In addition, the
proportion of male caregivers in this study is larger. Both groups, however, include long
term caregivers. That is, 77% of the caregivers participating in this study have been
providing care for more than one year while national survey data reﬂect the average
duration of caregiving to be 4.5 years. It should be noted, however, that some caregivers
provide care to multiple care recipients, either simultaneously or sequentially, resulting in
extensive caregiving careers. At least three study participants reported that they had been
providing care for more than ﬁve years.

The larger proportion of male caregivers may again be an artifact of the sampling
pool since all of the participating families had some level of contact with the formal
service delivery system (i.e. Area Agency on Aging, Care Management program). The
literature (Horowitz, 1985a; Kaye, and Applegate, 1990) indicates that male caregivers
tend to utilize formal services at a higher rate than female caregivers. In addition, the
distribution of male caregivers participating in this study suggests that they are more
likely to be members of caregiving teams rather than primary caregivers. For example,

twelve (86%) male caregivers were identiﬁed as “team members” and two (14%) as

36

 

“primary caregivers”. Among the female caregivers, however, eighteen (64%) were

identiﬁed as “team members” and ten (36%) as “primary caregivers”. This is consistent

with the ﬁndings of Pyke and Bengtson (1996). Of the twenty-two families participating

in the study, twelve (55%) used the primary caregiving approach and ten (45%) used a

team approach to caregiving. The caregiving teams ranged in size from two members to

six members.

The caregiving approach utilized by participating families was compared to the

ethnic identity of the caregiving system. The results of this comparison are presented in

 

 

 

 

 

Table 4.
Table 4: Comparison of caregiving approach and ethnic identity
Ethnicity Primary Care Approach Team Care Approach
Caucasian (N=17) 10 (59 %) 7 (41%)
African American (N=3) 2 (67%) 1 (33%)
Native American (N=2) 0 2 (100%)

 

 

 

These ﬁndings seem to suggest that Native American families are more likely to use a

team approach than either Caucasian or African American families. However, this

interpretation should be viewed with caution due to the limited number of cases involved.

Also, the participant survey requested information regarding the ethnic identity of the

care recipient rather than caregivers. In both cases involving Native American care

recipients, the caregivers were Caucasian. This may reﬂect a level of assimilation and

integration among ethnic groups in this geographic area not found in other regions.

Other scholars (Pyke and Bengston, 1996) have suggested a linkage between

ethnicity and the structure of caregiving systems utilized. For example, in their analysis

37

 

of individualist and collectivist caregiving systems, Pyke and Bengston (1996) suggested
that collectivisrn is associated with working class, ethnic minority families. These
ﬁndings lend some support to that observation.

Finally, the relationship of caregivers to care recipients was documented. Figure 1
illustrates the relationships identiﬁed by participants. Caregiving spouses were equally
distributed between males and females. Approximately 45% of the caregivers were
daughters of care recipients, while sons constituted 14% of the caregivers. The remaining

caregivers were identiﬁed as sons-in-law, daughters~in-law, ﬁiends, and a niece.

Figure 1: Caregiver relationship to care recipient

 

40'

10-

 

 

Percent

ol

 

Spouse Son Worm Other
We! Son-h-low Friend

In addition to situating the current project within the national discourse regarding

long-term elder care by families, this description of the sample has been provided in

38

 

order to enable readers to make informed decisions regarding the application of study
ﬁndings to other populations of interest.
Want Interviews

The organization of the following section is based on participant responses to the
questions constituting the “framework for inquiry”, which was introduced in Chapter 3.

l. Mums inﬂuence the selection of caregiving approaches?

In order to verify the data collected via the Participant Survey, care recipients
were asked to identify the people who usually provide assistance when needed. In
addition, they were asked how long each person had been providing assistance and
whether others had been involved in the past (see Appendix 3.A for speciﬁc wording of
interview questions). Care recipients generally identiﬁed their spouses and adult children
when responding to these questions. A few also mentioned formal service providers such
as home health aids.

When exploring changes in the caregiving system over time, care recipients often
referred to changes in the work schedules of their adult children to explain why they were
less involved than in the past. For example, one elderly mother explained, “we have a
daughter that was working 12 hours a night. When she was working that shift, she didn’t
work on Friday nights and then she would come up on Friday and take me out for a
while. But when she’s working 12 hours a day, she can’t do that.”

In a few cases, alterations in the health status of a caregiver resulted in changes to
the caregiving system. For example, one daughter who was assisting her mother with
providing care for her demented father was diagnosed with cancer and needed

considerable assistance herself while undergoing chemotherapy. Her sister, who had been

39

living in Florida, moved to Michigan in order to assist with the care of both her father and
sister. This case also illustrates that geographic distance is not necessarily a barrier to
caregiving, depending on the circumstances and motivations of the individuals involved.
In this particular case, the woman and her spouse had lived in the area previously and had
moved to Florida in order to pursue educational opportunities. They had already
considered moving back to Michigan and care needs within the family simply prompted
their decision to do so.
In another case, a woman moved from California to Michigan in order to care for
her father and his elderly sisters. She explained her decision as follows:
My father was their brother, and my father and I had always been very, very
close, and he lived in California with me for many years. And he had said to me,
“I want to go to Michigan to live with my sisters. There’s just the three of us left,
and one’s been sick for a long time.” Wherever my father was, I was always there.
In eighty-seven, I came back here to visit with him during my vacation, and
recognized the need. Before then, I don’t think I ever had. I went back to
California, and shared that need with my husband. I had been offered a couple of
retirement plans — early retirements that had penalties associated with them
because of my age. I wasn’t ﬁfty-ﬁve at the time. I had refused those. So it was
August of that year, eighty-seven, when I went back and told my husband about
it. Two months later I was off with full retirement.
Then my dad passed away in ninety-three, so this young lady is the last
one here, and she is quite a lady...I always accepted responsibility for my father.

My mother died when I was two years old, and I was so close to my father, so I

40

always recognized that as a responsibility, but never realized that the sisters also

needed the help. So when he was back here. . .as soon as I got time and vacation in

eighty-seven, I came. I remember sitting right here watching her in there. My dad
had emphysema for many years before he passed away, so he wasn’t in the best of
health. She was taking care of my dad, basically. She was taking care of her sister
that was bedridden, and she was taking care of a lady down the street. I sat here
and I thought — she needs help! I tell her all the time that actually I came here to
help her, because my dad and the other sister had her.

On the other hand, one caregiver expressed the belief that her siblings had moved
away at least partially in order to avoid caregiving responsibilities. She stated, “...both of
my brothers have been gone —one probably 20 years and the one for 10. My sister just left
here maybe three or four years ago. They give me their best [regards] and tell me they
wish they could help with mom.”

In order to better understand how caregiving systems are formed, caregivers were
asked whether they had anticipated their caregiving role and how they became involved
in providing care (see Appendix 3.B, questions 2 and 3). Only ﬁve caregivers indicated
that they had expected to be involved in caregiving. In most of these cases, there had
been another family member who needed care, e. g. a mother-in-law. This seemed to
precipitate planning or at least some consideration of the potential needs of the current
care recipient. A few caregivers had medical training or other work-related experiences
that had increased their awareness of the care needs of older adults. All of these

caregivers were adult children rather than spouses. Spousal caregivers frequently

41

mentioned plans they had made for retirement but denied that they had anticipated
caregiving needs or responsibilities.

' For some of the caregivers, their involvement was very rapid, often resulting from
a stroke or some other acute medical problem. For others, their involvement increased
gradually over time and may have evolved out of other responsibilities, such as in the
case of the niece/caregiver previously described. In another case, a daughter provided the
following history of caregiving:

I was involved with my mom’s care... I took her to the doctor, took care of

whatever I needed to take care of for her. And then when she passed away, Dad

just started not feeling good. So I started taking him to the doctor then to ﬁnd out
what was wrong with him and that was six years ago. It has just been an up and
down thing the whole six years. We just keep an eye on him when you are
right here it is just very easy. And also when you are the youngest child, they
seem to have a tendency to depend on you more.

It is interesting to note that this caregiver attributed her caregiving role to her
position as the “youngest child” in the family. As discussed in chapter two, the eldest
sibling is often the preferred caregiver; however, younger siblings occasionally ﬁll this
role due to situational factors, such as early widowhood or the premature disability of a
parent.

Other caregivers indicated that the onset of their caregiving role was very rapid.
For example, a wife stated it this way:

For me it was sudden, because it had been coming on for a while, but I guess I

just refused to see it. Then when we were down to my daughter’s in Florida

42

visiting, he became lost when he went out for a walk and he became incontinent...

So, of course, as soon as we got home we started taking him to the doctor and

seeing what his problems were and as it turned out there were many.

In order to assess the extent of caregivers’ involvement, participants were asked
to estimate the number of hours of care provided per week and whether the hours had
increased or decreased over time. Most caregivers had difﬁculty estimating the hours of
care provided, as previously mentioned, since it varied on almost a daily basis. Five
caregivers expressed a perception of continuous responsibility for the well being of a
family member. They were unable to estimate the number of hours of care provided per
week because they felt they were always on call or monitoring the care recipient. Two of
these individuals indicated that they were the sole family caregiver while three indicated
that other family members assisted with caregiving tasks, yet they perceived this
assistance to be secondary to their role and felt the need to monitor or “back-up” other
care providers. This perception of continuous responsibility appeared to be associated
with higher levels of stress and a diminished sense of general well being.

Most caregivers indicated that the time they spent increased as the care recipient’s
condition deteriorated and they were less able to do things for themselves. This was very
apparent in the cases that involved dementia or progressive conditions such as multiple
sclerosis. However, in several cases caregivers felt the time they spent with care
recipients had “leveled off ’ or decreased, usually because other services or supports
became available to assist with care. In some cases, the amount of time devoted to
caregiving had decreased because of outside circumstances. For example, a spouse lost

their job, so the caregiver needed to work fulltime. In another case, a caregiver diagnosed

43

with cancer needed to spend more time on self-care. In each of these cases, other family
members stepped in to meet the care recipients needs.

To summarize, it appears that these informal family caregiving systems,
composed of the care recipient and at least one family caregiver, are dynamic. That is,
they evolve over time in response to both the changing needs of the care recipient and the
changing circumstances of caregivers. Rather than being implemented as the result of a
deliberate decision-making process, they are usually formed and transformed in response
to changing needs and circumstances. They expand or contract over time in response to
internal or external conditions. This is consistent with Hareven’s (1995) argument that
family relations in late life are molded by individual members’ cumulative life histories
as well as by speciﬁc historical circumstances, such as wars, migrations, and economic
conditions. Factors inﬂuencing the caregiving approaches used by families also include
awareness of need, ability (physical, ﬁnancial, and emotional) to respond to the need, and
willingness to act on behalf of the care recipient. The latter appears to be linked to the
quality of both past and present relationship between the care recipient and potential
caregivers. This will be explored more fully in the following section.

2. Is there a relationshipbetween caregiving approach utilized and the subiective

well being of the caregiver} s)?

In order to explore the connection between the caregiving approach utilized and
the subjective well being of the caregiver(s), caregiver interviews included questions
addressing the history of their relationships with both the care recipient and other
caregivers, when appropriate, as well as other important relationships. (See Appendix

3.B, questions 21-24).

44

Effects of Caregiving on Relationship between Caregivers and Can: Recipients

 

Eight caregivers acknowledged negative effects of caregiving on their
relationships with care recipients. They described feelings of frustration, anxiety, fear and
anger that related to alterations in the care recipients’ level of functioning or to their own
limitations. One caregiver also acknowledged guilt feelings in relation to her impatience
with the care recipient. Another caregiver reported that she and her spouse had been
estranged for a number of years prior to the onset of caregiving. However, she allowed
him to move into her home when he became ill because “someone had to do it,” but there
appeared to be little, if any, affection between the two. Despite the potential distortion of
responses due to joint interviews as discussed in Chapter 3, these reports of negative
effects were distributed equally between caregivers interviewed in the presence of care
recipients and those interviewed separately.

Six caregivers expressed the belief that their relationships with care recipients had
improved as a result of caregiving. Two described emotionally distant relationships with
their parents prior to the onset of caregiving. Both felt that they have gotten to know their
parents better and as a result felt “closer” to them now than in the past. This may
represent one of the beneﬁts of caregiving that is often overshadowed by the burdens
(Horowitz, 1985a). It may also reﬂect the last-ditch efforts of adult children to correct
problematic relationships with their aging parents.

A few caregivers reported “no change” in their relationships with care recipients.
Most clariﬁed this by stating “we have always been close”. Such closeness may motivate
the initial commitment to caregiving and help to reduce the stress involved. However, it

also would appear that the lack of such emotional “closeness” does not necessarily

45

preclude involvement in caregiving as demonstrated by the caregivers that described
distant relationships prior to the onset of caregiving.
Effects of Caregivigon Relat_io_nships between Caregivers

During caregiver interviews, participants again were asked to identify other
informal caregivers and to describe how shared caregiving responsibilities had affected
their relationships with those people. It was interesting to note that several participants
who had identiﬁed themselves as “sole” caregivers when completing the participant
survey were able at this point to identify other family members who shared the
responsibility for providing care and who were therefore part of the caregiving system.
These individuals have been labeled “hidden caregivers” because their work is often
invisible or obscured. In a very real sense, they stand behind the “sole” or primary
caregiver. Their work is, nevertheless, important to the stability of the caregiving system.
They provide support to the primary caregiver and are available to step in when
emergencies arise. Consequently, they help to ease the burden of care in small, but
essential ways. For example, one caregiver said, “Oh my son once in a while, just to help
me, you know, but not on a regular basis at all.” Another stated,

I’m basically alone as far as commitment. I should say, there are people that I do

call. She has a dear friend that will sometimes come over on Sunday and spend a

couple of nights with her. There’s another gentleman down the street that checks

to see if she needs anything. I have a daughter that is very busy raising a teenager,

but sometimes she stops by. So all of them stop by and check on her.

These comments suggest that caregiving behaviors within families are not always

recognized and deﬁned as such. This may contribute to the perceived dominance of the

46

primary caregiving approach, which obscures the contributions of those who play
supporting rather than central roles within caregiving systems. It could be useful to
identify these hidden caregivers and work toward amplifying their roles to create a sense
of partnership or teamwork where it does not already exist. This will be explored more
fully in Chapter 5.

Members of caregiving teams also were asked to reﬂect on changes affecting their
relationships with other team members. Three caregivers explained that the effects of
caregiving on family relationships have been mixed. That is, they noted improvement in
some areas, like communication, as well as deterioration or tension in other areas. For
example, in one family dealing with dementia, family members had different perceptions
of the level of impairment of their father. One brother believed the care recipient was
more able while the others saw him as more disabled. This resulted in differences in how
family members approached and responded to the care recipient, which in turn generated
ﬁiction among the caregivers. The son acknowledged that he frequently felt annoyed at
siblings and his mother for showing “disrespect” to his demented father by treating him
like a child. The mother, on the other hand, believed this son did not accept, or “refused
to see”, his father’s limitations.

In this family, old issues of “who did what for whom and when” seem to
contribute to the tension. There was an underlying theme of old scores to be settled.
Hargrave and Anderson (1992) refer to this as the “intergenerational family ledger”
(p.170), which contains an unwritten record of obligations and entitlements. Furthermore,
these scholars suggest that helping families to achieve a balance in the intergenerational

ledger is an important focus when working with aging families.

47

Although difﬁcult at times, the family mentioned above was willing to work
together to ease the burden of care that would otherwise fall on their mother. They
expressed concern regarding her well being and the potentially negative effects of
caregiving. For example, one sibling stated, “she has gotten short-tempered and she just
seems to be so much more worried about things than she used to be. I think it has got to
be because she must have depended on Dad so much more than we realized.”

Five caregivers denied that sharing caregiving responsibilities had any effect on
their relationships with other members of the caregiving system. Most explained this by
saying something like “we have always been close” or “ we have always worked together
as a family”. Three caregivers reported improved relationships with other family
members as a result of shared caregiving. For example, one sister who moved from
another state to assist with the care of her father expressed that she feels emotionally
closer now that she is geographically closer to her family.

Several caregivers acknowledged that sharing caregiving responsibilities had a
negative effect on family relationships. For example, an adult daughter, temporarily
living in the home of her parents while helping to care for her father, acknowledged that
she and her mother “get on each other’s nerves” more than in the past. She characterized
their relationship as “more like ﬁiends” than parent/child and believed that living under
the same roof with her parents — along with her own young children — had strained this
relationship. The tension appeared to be secondary to their shared caregiving
responsibilities.

Another caregiver complained that she and her spouse, who helped care for her

mother, rarely are able to spend time away from home together. She states, “either he

48

goes and I stay, or I stay and he goes. We seldom go out together anymore”. Finally two
sisters who share caregiving responsibility for a neighbor acknowledged that they
occasionally experience ﬁiction when negotiating caregiving tasks.

Other Effects of Caregiving

Caregivers also were asked to describe how their caregiving role had affected
their work or other important relationships. Several of the caregivers were retired, and
one worked part-time as a volunteer. Among those caregivers who were employed, two
acknowledged that they had left work on occasion due to emergencies involving the care
recipient. Both denied that this was a problem and stated that their employers were
“understanding” and “ﬂexible” because they were aware of their situations.

One woman, whose spouse was apparently in the early stages of dementia,
described a feeling of perpetual stress due to worrying about him while she was working.
He denies his disability and refuses supervision during the day. Consequently, she is
anxious regarding his safety. Another caregiver said that co-workers as well as her spouse
have expressed concern about the amount of time she spends providing care. For
example, they express concern when she uses her personal leave days from work to
transport the care recipient to medical appointments. She states that she has made a
decision that “this has to stop” but is sure that the care recipient will resist using
alternative transportation. One caregiver stated that she had quit her job to care for her
mother. This woman, one of the younger caregivers, also mentioned that she had hoped
to continue her education, but deferred her plans in order to care for her mother.

Other caregivers mentioned that fatigue related to caregiving chores had affected

their lives in a negative manner. This seemed to be an issue for younger caregivers with

49

school-aged children as well as older caregivers, who had trouble sleeping at night due to
anxiety. For example, one elderly man reported “sleeping with one eye open” and being
“tuned in” to his wife’s breathing.

Several caregivers mentioned that their personal leisure time has been drastically
reduced due to caregiving chores. An elderly couple mentioned that their support system
has diminished since her health now precludes their annual trips to Florida with friends.
They also noted that many of their ﬁiends are experiencing similar health problems and
that several have died, further constricting their social support system. Two male
caregivers mentioned that caregiving chores had resulted in less time for leisure activities
such as hunting and ﬁshing. One also mentioned a loss of interest in previous hobbies,
suggesting reasons beyond caregiving for the decrease in activities. He said, “as far as
recreation and hobbies, and that sort of thing, I think at the age I am now, I’ve lost
interest in those things anyhow, because I can’t physically do them anyway.” This
statement could be an indication of depression. In addition, it may serve to reduce
feelings of guilt experienced by the care recipient or it may simply represent a statement
of fact.

Many caregivers report that activities now require more planning and are
therefore less spontaneous. One caregiver stated, “I wouldn’t say we really spend any less
time. It is a little more difﬁcult if I want to go do something because I need to have
somebody here. It is coming up more so now than it has (in the past) because she is
getting worse.” Another stated, “We have a son who plays basketball. Caregiving duties

often interfere with my ability to attend his games if they are away. Also, when we are

50

invited out, for example to a birthday party, I have to arrange to put my mother-in-law to
bed a little earlier than usual.”

A total of nine caregivers indicated that they have reduced or eliminated social
activities that they had previously enjoyed. These activities ranged from church
attendance and service club involvement to informal visits with friends. One caregiver
speciﬁcally mentioned feeling isolated by her caregiving responsibilities and another
admitted feeling lonely due to lack of contact with ﬁiends.

Three of the caregivers acknowledged that their caregiving responsibilities
reduced the amount of time they spend with their children or grandchildren. One woman
said that her spouse, the care recipient, was reluctant to leave home, even for family
gatherings. She was frequently conﬁonted with the choice of leaving him alone or
missing opportunities to see her grandchildren. She identiﬁed herself as the sole
caregiver. Another elderly male caregiver described a constant feeling of “pressure”. He
seemed very concerned about the quality of care his wife received and may experience
performance anxiety in relation to his role as caregiver.

Self-Assessment of Caiegiver Well Being

Finally, caregivers were asked to compare their current overall sense of well
being (i.e. physical health, emotional status, and important relationships; see Appendix
3.B, question 10) with their status prior to the onset of caregiving. Six caregivers believed
that they were “about the same”, that is, they denied that caregiving had affected their
well being in any way. Some caregivers seemed uncomfortable or unaccustomed to

consideration of their own well being, perhaps due to preoccupation with the needs of the

51

care recipient and/or the presence of the care recipient during the interview. This may
have prompted ambiguous responses as illustrated by the following:

Well, I’m a diabetic, and I give myself two shots, and sometimes I get off balance

because I forget. I get so busy that I just forget, but then I ﬁgure, well, I’m all

right, you know. But I do get tired. That I will say. I do get tired.
Of the responses coded ambiguous, ﬁve occurred during joint interviews while only one
occurred during a separate interview.

Seven caregivers felt their overall well being was “better” as a result of their
caregiving experience. One male caregiver said that he had made a decision to live a
healthier lifestyle after observing the deterioration of his father’s health. Others felt they
were more “understanding” or communicated more effectively with other family
members. One woman stated that caregiving had given her a sense of purpose, “I feel
very committed to this, very comfortable, and very peaceful. I had not found that peace in
my life before.”

Ten caregivers, however, acknowledged that they were “worse” off as a result of
caregiving. Most cited health problems such as high blood pressure and/or heart disease.
Others described chronic fatigue and emotional distress. Two caregivers mentioned that
they were taking prescription medications, such as antidepressants, to alleviate emotional
problems. Several acknowledged the importance of self-care, but stated they sometimes
had trouble ﬁnding time for activities such as exercise or medical appointments.

These responses were further analyzed regarding the presence or absence of the
care recipient during the interview. There did not appear to be substantial differences

between the responses of caregivers interviewed separately as compared to those

52

interviewed jointly. This suggests that the presence of the care recipient during the
interview may not have been as inﬂuential as previously assumed.
Difﬁcult Aspects of Caregiving

Caregivers also were asked to discuss the difﬁcult aspects of the caregiving role
as well as the positive aspects, based on their own experience (see Appendix 3.B,
questions 11 and 12). Seven caregivers denied that they considered any aspect of
caregiving “difﬁcult”. These responses were frequently qualiﬁed by comments such as
“it’s not that bad” or “... it is not that difﬁcult. This is what I do”. One man stated, “I
don’t feel it is because I’ll tell you what, when she ﬁrst got down in bed, I just started a
routine, getting up in the morning, doing certain things and then I do it every day the
same way.”

Three caregivers indicated that overcoming the resistance of the care recipient
was a difﬁcult aspect of providing care. For example, one daughter caring for her
demented mother found it necessary to move the care recipient into her home despite her
mother’s objections:

...so I had to bring her here and it was very, very — that was very difﬁcult —

because she was very paranoid, very difﬁcult, physically difﬁcult. She kept

threatening to leave and to walk and to go back home and this type of thing. It
was very difﬁcult taking care of her.

While such resistance may have made caregiving more difﬁcult, it did not appear
to diminish the determination of this caregiver to provide for the needs of her elderly
mother. In another case, pride seemed to be the basis for the care recipient’s resistance.

For example, the caregiver stated:

53

It’s a pride thing. She said that she doesn’t need anybody to cook for her. She can

eat. She was eating because I was cooking meals ﬁve days a week, and then a

couple of frozen dinners on the weekend. That went on, I cooked for probably two

and a half, or three months, before I got her to accept the meals on wheels. That
was really hard. She said, ‘I’m not going to take charity. I’m not going to take
meals without paying for it.’

Two caregivers mentioned that dealing with delusional ideas and related
behaviors was very difﬁcult for them. For example, one female caregiver commented,
“...mainly the most disturbing thing is whenever he has a delusion, that upsets me. Like
Sunday he didn’t know I was his wife...but he’s not like that, hardly ever. I mean, you
know, this just happens once in a while. But, it is scary when it happens.”

One caregiver mentioned that bathing and dressing her elderly father has been
difﬁcult for her, although she had training and work experience as a certiﬁed nurse’s aid.
Her discomfort seemed to be related to the intimate physical contact more than the actual
labor involved, as illustrated by this comment:

...I did it at the hospital and I did it to other people, but it is — I don’t know — it is

different when you do it for your family. I mean I know it has to be done, so I just

do it.
Her discomfort may be related to societal taboos that preclude intimate physical contact
between parents and children of the opposite sex (Horowitz, 1985b; Montgomery, 1992).
Four caregivers mentioned that arranging to “get away” or take a break ﬁom

caregiving duties was the most difﬁcult aspect of their situations. This was more

54

frequently the response of sole caregivers, but also was reported by one team caregiver.

The following illustrates this type of response:

Sometimes it is hard when you say, ‘no I can’t do something because I have to

take care of him’ — like going camping or out to dinner. Sometimes you get mad

at yourself because ...I’m human. Like I said, we’ve been doing it for ahnost a

year and there are times when I don’t want to do this — then you feel really bad

when you feel that way. It only lasts a short time and then you are over it. You
know that this is what you have to do.

Two caregivers, both of whom were male, mentioned that sleep deprivation and
the resulting fatigue were very difﬁcult for them. For example, one caregiver attributed
his own health problems to lack of sleep, “See this is why I think I had the breakdown. I
had to get up every night. Sometimes I couldn’t sleep before or after I couldn’t sleep, I
didn’t get much sleep.” Subsequent to his “breakdown” (apparent CVA), another family
member took over the task of periodically repositioning the care recipient during the
night so that this elderly man could get uninterrupted rest. However, the residual effects
of his CVA continue to diminish his general sense of well being.

One caregiver stated that coping with her anger is the most difﬁcult aspect of
caregiving. She saw herself as the sole caregiver, although she reported that her adult
children do help out occasionally by providing respite care for their father. In this case,
she was separated from her spouse, the care recipient, prior to the onset of caregiving but
allowed him to move into her home rather than see him admitted to a nursing facility. She

attributed his illness to alcoholism and stated,

55

To see somebody do that to themselves — the ﬁrst time he was sick, the doctor
told him he would have to stop drinking, because the ﬁrst time he went in the
hospital he was in for acute alcohol poisoning. I said, ‘You almost died.’ When I
took him back to the doctor, the doctor said, ‘You’re not drinking, are you?’ and
he said, ‘Well, sort of.’ The doctor told him there’s no such thing as ‘sort of
dead’.

An adult daughter, who provides care for her mother who is afﬂicted with
Alzheimer’s Disease, stated that she is fearful regarding her own future. She said,

I think the difﬁcult part is seeing her lose her everyday things — I mean her short-

term memory. It is just ﬁightening. She gets mad and frustrated because there are

times when she can see (her own limitations). I think that’s probably the most
difﬁcult and to think — well maybe in twenty years, I’ll be the same way.

Only one caregiver mentioned that ﬁnding time to do necessary tasks was the
most difﬁcult aspect of providing care. Ironically, this woman was part of the largest
caregiving team to participate in the study. She was, however, a key member of that
team, taking responsibility for medication and money management. In addition, she had
recently resumed full-time employment.

Another woman, who assists with the care of her mother-in-law, noted difﬁculties
related to differences in styles of communication. She explained the situation this way,

They don’t ever complain — it is the way they were brought up — so I feel that I

shouldn’t either. Sometimes that is a problem. Like when I went to the hospital

last week, they were shocked because they didn’t realize that I wasn’t well.

56

Occasionally, such differences can result in misperceptions regarding the needs and
limitations of both caregivers and care recipients.

The perception of caregiving “difﬁculties” seemed to be inﬂuenced by gender.
Responses from male caregivers ranged from denial of any difﬁculty to acknowledging
chronic fatigue due to sleep deprivation. Some mentioned that being conﬁned to the
house was difﬁcult for them. For example, one elderly male spouse stated,

Just having to be here all the time. You know, I’d like to wander off somewhere. I

got a small blueberry patch I need to cut back, but I can’t go out there, you know,

if she hasn’t got help in here...
Another man stated that helping his wife cope with chronic pain was difficult for him,
“...the pain that she had — what hurts her, hurts me. I would say everything else is all
right, but that gets to me.”

Finally, an adult son who helped to care for his father states that watching the
progression of dementia has been difﬁcult for him, “Well the most difﬁcult for me is just
the basic simple fact of seeing Dad, but not seeing Dad.” In another case, a daughter
caring for her demented mother said that her siblings used similar difﬁculties to justify
their lack of involvement, stating, “Mom just isn’t Mom anymore.” Female caregivers
were more likely to mention the difﬁculty of managing emotions such as fear, anger, and

anxiety as well as coping with social isolation.

Positive Aspects of Caregiving

On the other hand, many caregivers were also able to identify beneﬁts, or positive

aspects, of their caregiving role. Four caregivers indicated that the “best thing” about

57

caregiving was that it allowed them to feel closer to or get better acquainted with the care
recipient. One woman expressed it this way:

Getting to know her, and spending time with her. I feel as I work with her - she’s

like a mom to me. Since my mother passed away when I was two years old, I

think that spending the time with her is just priceless. It’s my family roots, and

I’m able to come over and talk to her about anything. We can laugh and share

secrets. It’s just wonderful.

Six caregivers indicated that being able to meet the needs of the care recipient
and/or to make their life better in some respect was the “best thing” about their work.
One caregiver stated, “the best is the look on her face — the look of relief, of satisfaction
and comfort.” Another stated, “I feel good that I’m just able to help her.”

Five caregivers indicated that having the companionship of the care recipient was
the “best thing” about the work of caregiving. One son stated this very succinctly, “...a
chance to spend time with Dad” and a daughter stated, “I’m glad that I did it, because
I’ve had ﬁve years with her that I probably would have missed.”

Four caregivers (all daughters) indicated that being able to fulﬁll family
obligations or keep commitments was the “best thing” about doing the work of
caregiving. Deep feelings of affection or love for the care recipient appeared to motivate
their actions. Two of these caregivers perceived themselves to be solely responsible for
caregiving while the other two were members of caregiving teams. However, their
perspectives seemed to be very similar. One daughter stated, “I learned a long time ago
that your family is everything and even though I moved away, when I needed to come

back, I came back.” Another daughter stated, “I’m adopted, and so I feel I’m giving back

58

some of what they did for me — I love them, you know.” Finally, a daughter stated, “I just
love my father — I don’t think of it as a chore, I don’t think of it as a burden or anything.
It is just a part of my life.” In many cases, these feelings of affection appeared to be
reciprocated, as illustrated by this caregiver’s comment, “when she tells me at night,
‘thank you’, and that she appreciates it, and that she loves me.”

Two caregivers viewed their work as an investment in their own future. One
summarized her perspective this way:

My grandmother took care of me a lot when I was a little child. One of the things

she taught me was ‘God is going to pay you back when you care for others.’ One

day, I will need someone to take care of me...

Another stated, “Oh I don’t know other than my children having an opportunity to
see some of the responsibilities that I feel toward my parents. I think my children have a
learning experience in that.” He also indicated his belief that this would inﬂuence their
caregiving behavior when it was his “turn” to receive care. Such role modeling was also
identiﬁed by Horowitz (1985a) as one of the beneﬁts of caregiving.

Three caregivers mentioned that their caregiving had resulted in increased faith or
spiritual awareness, or had made them, “a better person”. For example, one woman
stated, “I’ve been a Christian a long time, but this has made me realize that I have
stronger faith than I did before.” Another said, “I have never been overly religious. Now,
I practice my faith, and it’s brought me back into my faith more. Sometimes it is, ‘God,
give me the strength.’ Sometimes that’s all that gets me through.”

Of the twenty-two families represented in the study, twelve used a primary

caregiving approach while the remaining ten families used a team approach to caregiving.

59

The responses of primary caregivers seem to indicate that they have more difﬁculty
arranging time away ﬁ'om their caregiving tasks, they may neglect their own needs and,
consequently, may suffer more ﬁom fatigue and chronic health problems. Team
caregivers, on the other hand, were more likely to indicate that their overall well being
was “better”, or “about the same”. Improvement was most often attributed to improved
communications and feeling emotionally closer to other family members.

Although team caregivers reported experiencing difﬁcult emotions similar to
those experienced by primary, or sole, caregivers, they also had more immediate access
to support ﬁ'om other team members. Such support may help to mitigate some of the
negative effects of caregiving (Horowitz, 1985b, Kahana, Biegel, and Wykle, 1994).
Families with a history of “working together” seemed to adapt more easily to shared
caregiving functions. For at least one family, however, conﬂict‘did not preclude
collaborative caregiving, as illustrated by the son who was frequently in conﬂict with
other family members as a result of his perception of “disrespect” shown toward their
demented father.

3. Is there a relationship between the caregiving approach utilized and the gualig

ofgu'e provided to older adults?

 

In order to explore the relationship between the caregiving approach utilized by
family caregivers and the quality of care provided to older adults, several questions
addressing this issue were included in both care recipient and caregiver interviews (see
Appendix 3.A, questions 8—12, and Appendix 3.B, questions 11-13).

Care Recipients’ Perspectives Regardin uali of Care

60

First, care recipients were asked whether they felt they were getting enough
assistance to meet their needs. Responses to this question generally were positive; that is,
respondents indicated they were getting enough assistance to meet their needs. Only two
respondents indicated they were not getting enough assistance. Both of these individuals
had complaints related to agency staff rather than family caregivers.

Care recipients were then asked whether they were ever without help when they
needed it. Responses to this question generally were negative; that is, respondents said
they were never without help when they needed it. However, in ﬁve cases respondents
indicated that they were occasionally without help. Four of these complaints were in
relation to the scheduling of agency personnel. In the ﬁfth case, the care recipient was a
male with dementia who was very preoccupied with his tractor and ﬁ'ustrated that his
sons were not always available to help when he had problems with it. This man was very
concerned with lawn and garden chores but seemed unaware of household tasks
performed by his spouse and daughters. This suggests the possibility of gendered
differences in the perception of “quality” care.

Next, care recipients were asked to identify some aspect of their care that they
considered “good” or “important”. Only one respondent was unable to identify something
about their care that was “important” to them or that they considered a “good thing”.
Most respondents identiﬁed concrete tasks that address basic needs such as food
preparation or assistance with bathing and toileting. For two respondents, the consistent
presence and companionship of caregivers were very important.

A list titled “Elements of Quality Care” was then shared with care recipients (see

Attachment, Appendix 3.A). This list was generated by focus group participants in a

61

previous study conducted by the researcher (Brewer, 2000). It contained items such as
safety, respect, love, consistency of care, and effective communication. Respondents
were encouraged to delete items or add items to the list based on their own experience.
All respondents agreed that the items listed as “elements of quality care” were important
to them and no items were deleted. However, one respondent added two items. These
were “a clean living area” and “trust”. This person reported that she had experienced theft
by a former caregiver and that the experience made the ability to trust caregivers very
important to her.

Finally, care recipients were asked to rate their level of satisfaction with the care
they receive. Eight care recipients indicated that they were “very satisﬁed” with their care
and six indicated that they were “satisﬁed”. None indicated that they were “not so
satisﬁed”. There appeared to be some blurring of the boundary between family and
formal caregivers when addressing the issue of quality of care. That is, respondents
sometimes referred to paid caregivers rather than family caregivers to provide rationales
for their responses. However, all responses were generally positive.

Respondents’ feelings of vulnerability may have inﬂuenced their responses or
they may have been reluctant to disclose less than satisfactory care due to fear of
repercussions. Also, there was some indication that care recipients were “satisﬁed” if
they believed their caregivers were doing the best they could, even though their situations
were less than ideal. For these individuals “quality of care” seemed to be measured in

terms of effort expended on their behalf and the good intentions of their caregivers.

62

Caggivers’ Perspectives Regarding Qpalig of Care

Caregivers also were asked to rank their level of satisfaction with the care
provided by themselves and other family members. Most of the caregivers interviewed
said they would rate the quality of the care provided as “high quality”. Eight caregivers
rated the quality of care provided as “average”. Some commented that they could do a
better job if they didn’t have other responsibilities. For example, one caregiver stated, “If
I didn’t have to work I could do better.” Only one caregiver rated the quality of care
provided as “low”. In this case it was clear that the caregiver was referring to care
provided by agency staff rather than the care provided by family, although the researcher
attempted to clarify this distinction. For example, she stated “The help takes advantage of
me — they don’t do simple things like emptying the trash or running the vacuum unless I
ask them to and when I do ask, they get an attitude. They want to sit and talk and they
often leave early.” It seemed that there was a need to ventilate pent up frustrations and
this caregiver used the interview to do so.

There was no evidence of substantial differences in the quality of care provided
by families using a team approach as compared to those using the primary caregiving
approach. This could be due to a general reluctance to disclose dissatisfaction or
problems associated with care provided by family members. When complaints were
expressed, these always were directed toward formal service providers rather than family
members. It is important to remember that this discussion of quality of care is based on
the perspectives and subjective opinions of the participants. The observations and
impressions of the researcher revealed that the quality of care provided by families

ranged from excellent to barely adequate. For example, in one home the strong odor of

63

stale urine suggested that personal care needs were not being adequately addressed. The
care recipient, however, indicated that she was “satisﬁed” with the quality of care
received. This suggests that if “objective” measures were used to evaluate quality of care,
the results could be considerably different than those reported by the participants.

4. Mat type of interventions or supports do family caregivers believe they need

in order to strengthen their caregiving capaciﬂ?

The ﬁnal question of the framework for inquiry addresses the perceived needs of
families for additional interventions or supports in order to strengthen their caregiving
capacity. This question was included in both care recipient and caregiver interviews (see
Appendix 3.A, question 13 and Appendix 3.B, question 14). Many of the care recipients
were unable to identify anything they thought would improve their situation and most
reiterated that they were satisﬁed with the care they were currently receiving. Two
indicated that their situation would improve if only they were able to do more for
themselves. However, they also indicated that this was unlikely to occur. One care
recipient mentioned a speciﬁc piece of medical equipment that was needed, and another
said that she would like to go out more often.

Caregivers, on the other hand, usually were able to identify unmet needs, although
seven were unable or unwilling to do so at the time of the interview. Several mentioned
that they were currently satisﬁed with the assistance they were receiving since the Care
Management program had arranged for them to obtain needed services. One caregiver
said that getting her mother to the doctor’s ofﬁce for routine checkups was a real
challenge and she wished that this could be done at home. She said, “I just dread taking

her to the doctor. I got to take her now to get ...a ﬂu shot. Why can’t somebody come to

the home and give it to her and check her out because that’s about all they do when I take
her in. They could do all that every so often...”

Six caregivers identiﬁed issues with in-home care. A few identiﬁed the need for
more personal care hours. Some had issues with the reliability or quality of available in-
home workers. For example, one caregiver stated:

Okay, getting somebody that I could trust. I had a girl come in, which Medicaid

would pay for. I was not comfortable with this person at all. I guess I would want

somebody that I could meet a few times and be around and see them work. How

do you know if they are going to beat her — I mean, talk about paranoia — I’m

paranoid! Just like it’s imbedded into me. Maybe not somebody doing my

housework...more so just making sure that she’s got her shower in the morning

and she’s got her breakfast and she’s got clean clothes on and, you know, if I

could get somebody to do that, it would be wonderful.

Another caregiver stated, “I could use more hours and help that will do the work
that they are paid to do. I end up doing what they are paid to do and that isn’t fair.” Other
caregivers expressed concern regarding the level of training available to personal care
workers, such as the ability to use a Hoyer lift or skills in assisting with wheelchairs,
bedpans, etc.

Three caregivers identiﬁed needs related to adult day care services (ADC). One
family was currently using the service but wished that it could start earlier in the day so
that the care recipient need not be left alone in the morning after the caregiver went to
work. Another caregiver expressed a need for ADC for her father, which she believed

would also beneﬁt her mother. She said “...probably what would make things better is for

65

my mom and my dad to have a break from each other. I lorow at one time they had talked
about getting my dad to...like a daycare for elderly.”

In still another case, the caregiver mentioned that ADC was available, however
the care recipient chose not to use it. She stated:

I would love to be able to take her to daycare, which is available today, but she

chooses not to do that, and that’s all right... If I could take her to a facility, and

know that she’s going to be okay there while I’m gone, and know that she’s going
to be fed, and taken care of medically, and that type of thing... She just chooses
not to do that. She’s just so independent.

In addition, three caregivers identiﬁed speciﬁc equipment needs, such as a larger
shower, covered wheelchair ramp, or an electric cart. Three caregivers identiﬁed a need
for “more money” to cover general expenses associated with caregiving. Other needs
identiﬁed by at least one caregiver include evening respite hours, assistance with the cost
of prescription medications, better medical transportation, housing repair, and assistance
with meal preparation.

The ﬁnal question, “Is there anything else you would like to add?” was designed
to give participants an opportunity to expand on any of their previous responses as well
as to bring closure to the interview process. Many care recipients did not have anything to
add to the interview at this point. However, a few did express gratitude toward their
caregivers and one expressed dissatisfaction with care received previously in a
rehabilitation facility. Another respondent stated that “dependence” was the hardest part

of her situation and another described her struggle with intractable pain.

66

When asked if there was anything else they would like to add, eight caregivers
indicated that they had nothing further to say. Three caregivers described feelings of guilt
or other uncomfortable emotions associated with caregiving. For example, one woman
stated, “...just the feelings that you have. Sometimes you get the guilt feeling. You get
frustrated and then wish you hadn’t gotten frustrated. You realize it is not their fault and
you know — just more the emotional, I think than anything else.”

In addition, three caregivers described positive emotions associated with
caregiving. For example, one woman stated, “ To me, its just family. It’s commitment. I
do it gladly, and it’s an honor.”

One caregiver expressed gratitude for being able to work with her sister to
provide care for their father. She said:

I just think my sister and I are very fortunate that we are in a position that we can

work together. You know, my folks did a great job with developing relationships.

She and I have a great relationship and I hear so many families that don’t. We just

work very well together keeping him home. I just — I feel very thankful for that.

However, in other cases, caregiving strained relationships and added to tension
within the family. In one family, using a team approach to care for their father who
suffers from a combination of physical and cognitive limitations, a son stated:

I think the relationship with everybody — with all of us - probably has changed. I

guess what I’m referring to is attitude. One of my sisters and my brother, they just

don’t treat Dad with the respect that the man deserves all the time. They don’t

consider his difﬁculties when they are dealing with him. I’m kind of upset about

67

that at times. I don’t know if they don’t understand or they don’t have patience

but it just makes me mad.

Another woman discussed the dilemma of deciding to place her mother, an
Alzheimer’s patient, in a nursing facility to ensure the well being of her elderly father.
She stated:

I was told by the social worker, it was either put my mom in a home, or my dad

would die...he’s eighty-seven. It was very hard for me -— with my mother —

because I’d come over here, and my dad would be in the back bedroom trying to

take a nap. That was when I worked. I got off at one o’clock in the aftemoon. I’d

be here about one-thirty, and my dad would be taking a nap, and my mother

would be sitting on the couch screaming because my dad was sleeping. Well, he’d
probably been up all night, see?

Other topics mentioned by at least one caregiver include problems with paid help,
concerns regarding the cost and quality of medical care, and frustrations regarding the
lack of individualized medical information. In addition, one caregiver described the
difﬁculty of helping the care recipient cope with unpleasant emotions. She said, “She
might have ﬁve visitors in one day, and be upset because she couldn’t rest, and the next
day she’ll be sad because she didn’t hear from anybody, or nobody stopped by.”

Finally, one caregiver addressed the issue of “keeping the promise”. This woman
had cared for her mother prior to her recent death and continues to provide care for her
spouse, who has suffered a severe stroke. She said:

I don’t think it’s as bad as what some people think it is — caring for your own. I

know that I’d rather do it here, than to have him in a home (i.e. nursing facility). I

68

promised Morn I’d never put her in a home...I was able to keep that promise. I

promised him that I will take care of him just as long as I can...

It is interesting to note the change in the promises made by this woman to her
mother as compared to her spouse. Perhaps she learned from her ﬁrst caregiving
experience that “never” can be a very long time. Although she remains committed to
caring for her spouse, she also has given some consideration to her own needs and
limitations — to what she can and cannot do.

The following is a summary of the major ﬁndings of this project, based on the
framework for inquiry outlined in Chapter 3.

1. What factors inﬂuenced the selection of the caregiving approach?

The caregiving approach selected by families appears to be inﬂuenced by a
variety of factors. These include, but are not necessarily limited to, awareness of the need
for care, ability to respond to the identiﬁed need, and willingness to act on behalf of care
recipients, sometimes despite their resistance. It was also apparent that informal
caregiving systems are usually formed and transformed in response to the changing needs
and circumstances of family members. Rather than being implemented as the result of a
deliberate decision-making process, they seem to evolve over time as families adapt to
both internal and external forces, such as aging and/or ill health or job requirements.

2. Is there a relationship between the caregiving approach utilized and the

subjective well being of the caregiver(s)?

Participants utilizing either a primary caregiving approach or a team caregiving
approach were able to identify both positive and negative effects of caregiving on their

personal sense of well being. However, team caregivers were more likely to indicate that

69

their overall well being was “better” or “about the same”. The responses of primary
caregivers seemed to indicate that they have more difﬁculty arranging time away from
caregiving responsibilities, that they may neglect their own needs, and that they suffer
more from fatigue and chronic health problems. While team caregivers reported
experiencing difficult emotions similar to those reported by primary caregivers, they also
had more immediate access to support from other family members. This support seemed
to moderate the negative effects of these emotions. It was also noted that families with a
history of “working together” seemed to adapt more easily to caregiving functions.
However, conﬂict did not necessarily preclude collaborative caregiving.

3. Is there a relationship between the caregiving approach utilized and the

quality of care provided to older adults?

The issue of quality was addressed in interviews with both care recipients and
caregivers. All of the care recipients agreed that the “elements of quality care”, such as
safety, respect, love, consistency, effective communications, were important to them. In
addition, the majority reported that they were either “satisﬁed” or ‘Very satisﬁed” with
the quality of care they were currently receiving. If dissatisfaction was expressed, it was
always directed outside the family caregiving system and toward formal caregivers.
Furthermore, their “satisfaction” appeared to be associated with the efforts of family
members on their behalf. In other words, if they believed the family was “doing the best
they can”, they were satisﬁed regardless of the actual quality of care received.

The majority of caregivers rated the quality of care provided by the informal
system as “high” or “average”. Again, comments regarding “low” quality were directed

outside the informal system. There was no evidence of substantial differences in the

70

 

quality of care provided by families using a team approach as compared to those using a
primary caregiving approach. It was noted, however, that the use of an objective measure
of “quality” could yield considerably different results.

4. What type of interventions or supports do family caregivers believe they need

in order to strengthen their caregiving capacity?

This question also was addressed in interviews with both care recipients and
caregivers. Care recipients, for the most part, did not identify anything they thought
would improve their situation but reiterated their satisfaction with the care they were
currently receiving. Caregivers, on the other hand, were usually able to identify unmet
needs. Many of these needs were associated with in-home care. These included a need for
house calls by physicians, more personal care hours, better training for in-home workers,
extended adult day care hours, and evening respite services. In addition, caregivers
mentioned needs for speciﬁc medical equipment and “more money” to cover general
expenses associated with caregiving.

The issue of monetary compensation for family caregivers highlights another area
of blurred boundaries between informal and formal caregiving systems. While this
practice does bring additional ﬁnancial resources into the caregiving system, it also can
have unintended negative effects. For example, two caregivers (daughters) in the sample
were being paid through home health agencies for some of the time spent caring for their
elderly parents. In one family, this seemed to work very well as it enabled the daughter to
devote more time to caregiving in lieu of full-time employment. In the second farrrily,
however, it seemed to contribute to conﬂict between siblings since the uncompensated

sister felt it was not her “job” to assist with care, as reported by the primary caregiver. In

71

another case, a grandmother occasionally paid her grandchildren to provide respite care
for her mother, who suffered from Alzheimer’s Disease. If payment for services is used
as a criterion to distinguish formal from informal caregivers, these individuals stand at
the boundary between systems.

Another occurrence of blurred boundaries was observed between the roles of
caregiver and care recipient. For example, a daughter who was part of a caregiving team,

became a care recipient due to changes in her health status. In another case, a woman

 

who served as a primary caregiver to her spouse now needs assistance from their
daughter because of deterioration in her own physical condition. This observation
illustrates the evolution of roles that occurs within such systems over time.

When considering these ﬁndings in relation to the general hypothesis that families
utilizing a team approach to caregiving experience more positive outcomes than those
utilizing a primary caregiving approach, the results are mixed. In relation to the outcome
of quality of care provided, there is no evidence of substantial differences among families
utilizing either approach. However, in relation to the outcome of caregiver well being,
there is evidence that team members report a better sense of over-all well being when
compared to primary caregivers. Although the hypothesis cannot be rejected, more
research is needed in order to support it fully.

This chapter has described the results obtained from the participant survey and
participant interviews. Survey results were compared to national caregiving data in order
to situate this project within the broader national discourse addressing informal, long-
term care for older adults. In addition, the results of participant interviews were presented

and summarized utilizing the “framework for inquiry.” The implications of these

72

 

observations as well as conclusions drawn from study ﬁndings and directions for ﬁrrther

research will be discussed in the following chapter.

73

Chapter 5
Summary, Conclusions and Implications

As stated in Chapter one, this project utilized ethnographic methods to explore the
culture of caregiving, situated within the context of families that are actively engaged in
the provision of elder care. The project was designed to investigate the general hypothesis
that families using a team approach to caregiving experience more positive outcomes
than those using the primary caregiving approach. Semi-structured interviews were
conducted with twenty-two families. Of those families, twelve represent the primary
caregiving approach and ten represent the team approach. Interviews included care
recipients, when feasible, as well as all available family caregivers. In addition to the
interviews, a written participant survey was used to collect pertinent demographic data.
The intent of the project was to develop a better understanding of how caregiving systems
are constituted, how roles within such systems are deﬁned, the meanings that participants
ascribe to caregiving responsibilities, and the effects of caregiving on individual and
family well being.

The Evolution ofgaregiving Systems

The ﬁndings reported in Chapter four suggest that caregiving systems are
constituted, or formed, in response to changing needs and circumstances within families.
Factors inﬂuencing the caregiving approach utilized by families include awareness of
need, ability to respond to the need, and willingness to act on behalf of those in need.
Geographic proximity may facilitate awareness and identiﬁcation of need, but does not
necessarily guarantee it. This was demonstrated by family members who “failed to see”

or “refused to see” the need for care although living in close geographic proximity to

74

their older relative. In addition, one participant suggested that several of her siblings had
left the area in order to avoid caregiving responsibilities. On the other hand, two
participant families had members who relocated ﬁ'om other geographic areas in order to
assist with caregiving. Nevertheless, it appears that females living near the care recipient
are more likely to be actively involved with caregiving than are family members living at
greater geographic distance.

Keith (1995) suggested that the gender composition of families might be a factor
in the formation of caregiving teams; that is, when several daughters are present, they are
more likely to share caregiving responsibilities. This was not substantiated, however, in
the current study. In fact, in one family of three sisters, the primary caregiver expressed
intense anger that her sisters had virtually abandoned their caregiving responsibilities. It
should be noted that this caregiver was receiving payment for at least part of the hours of
care that she provided for her parents. It is possible that this practice may have
contributed to the perception by her siblings that caregiving was her “job”, not theirs.
Unfortunately, it was not possible to verify this speculation since the other sisters were
not interviewed. It was observed, however, that among the ten caregiving teams
represented in the study, only two were composed entirely of female siblings. The other
eight teams included male spouses, sons, sons-in-law, or friends. This also demonstrates
that the role of male caregivers may be obscured when the primary caregiver is the focus
of investigation.

Furthermore, these ﬁndings suggest that, while speciﬁc caregiving approaches are
rarely the result of a deliberate decision-making process, they do appear to evolve over

time as families adapt to alterations in both internal and external conditions. Such

75

adaptation is an important theme of family ecology theory, as described by Bubolz and
Sontag (1993).

The deﬁnition of roles within caregiving systems also appears to be a dynamic
process. That is, role deﬁnitions changed over time as caregivers became care recipients
and as family members who had been only tangentially involved with caregiving
assumed more central roles. This was demonstrated in interviews with caregivers who
initially identiﬁed themselves as the “primary” or sole caregiver but were later able to
identify other family members who also provided valuable assistance. The role of these
“hidden” caregivers was obscured because their work was not originally deﬁned as
caregiving. This information regarding the formation of caregiving systems is important
because it could contribute to strategies for expanding participation in caregiving systems
as well as for improving their performance. For example, providing support and
information to families during the formation of caregiving systems may help to prevent
problems that would otherwise disrupt the functioning of these systems.

There was considerable variation within the sample in relation to the meanings
that participants ascribed to their caregiving responsibilities. Many participants felt that
caregiving was simply a reasonable response to the strong affection, or love, they felt for
the care recipient. Other participants indicated that caregiving was the fulﬁllment of a
deeply felt obligation or reciprocation for assistance previously provided to them, as in
the case of an adopted daughter who provided care for her father. Still others saw
caregiving as a means of protecting vulnerable family members, such as an elderly

mother. For example, one daughter stated “if we don’t do it, she will have to”. The

76

meanings ascribed to caregiving were highly individualized and were based on the unique
history of each family.

Outcomes of Team and Prima_ry Caregiving

 

This project has examined the outcomes experienced by families utilizing either a
team or primary caregiving approach to elder care. Although the primary caregiving
approach has dominated research on the topic of family caregiving, a range of caregiving
strategies can be identiﬁed when observing the actual practices of families. These
strategies include partnership and team approaches to caregiving as well as the sole, or
primary, caregiving approach. It is not possible, based on the ﬁndings reported here, to
say whether one approach is superior to the others in terms of the quality of care
provided. It would seem, rather, that in this context quality is not an issue of better or
worse care, but whether a particular approach seems to work for a particular family. That
is, are the needs of the care recipient consistently met and are caregivers reasonably
satisﬁed with their roles? If not, families may beneﬁt from interventions designed to help
them ﬁnd a better ﬁt between their caregiving capacity and the needs of their elder
members.

Based on participant responses, it also was clear that caregivers using either a
primary care or team approach struggle with painful emotions such as anxiety, anger, and
guilt that affect their sense of personal well being. However, the negative effects of these
emotions appeared to be meliorated by the use of a team approach, possibly due to the
support provided by other team members. To summarize, there appears to be little if any
difference in the quality of care provided by caregiving teams when compared to primary

caregivers. Furthermore, the team caregiving approach appears to have some beneﬁt in

77

 

terms of caregiver well being. Therefore, it may be useful to assist families in developing
their capacity for team caregiving where it does not already exist.
An Ecological Arglysis of Caregiving Systems

Using family ecology theory as a conceptual framework, it is important to
consider the inﬂuences of natural and human-built environments as well as social cultural
environments in the analysis of family caregiving systems. While natural and human-
built environments inﬂuence both the form and ﬁrnctioning of such systems, it is clear
that the inﬂuence of the social cultural enviromnent is much greater. For example, the
quality of air and water as well as the climate in certain geographic areas may inﬂuence
life styles and physical health, such as hip fractures resulting from falls on icy sidewalks.
This in turn may precipitate the need for care among older adults as well as affect the
capacity of families to respond to that need.

Furthermore, human-built environments can facilitate or impede the caregiving
functions of families. For example, the design and ﬂexibility of housing can affect the
activities of families who are striving to respond to the care needs of elder members
(Kahana, Biegel, and Wykle, 1994). Renovation of older homes to accommodate
wheelchairs and other necessary equipment may be very costly. Furthermore, elders
living in apartments may not have sufﬁcient space to accommodate live-in caregivers or
restrictive policies may preclude their doing so. Finally, inadequate public transportation
systems may increase the dependency of older adults on family members for
transportation to medical appointments and other activities. For example, several care

recipients participating in this study indicated that they were reluctant to use available

78

I

medical transportation services because of the perception that such services were
unreliable.

While these inﬂuences are important, they are overshadowed by the inﬂuence of
the social cultural environment. Tylor (1871) provided the classic deﬁnition of culture —
that complex whole that includes knowledge, belief, art, law, morals, custom, and any
other capabilities and habits acquired by a human being as a member of society
(emphasis added). Society consists of people while culture consists of their practices and
patterns of interaction. Culture provides a blueprint for the socialization of individuals
into the roles they will assume as members of society (Bubolz and Sontag, 1993),
including the roles of caregiver and care recipient.

Culture also provides a template for seeing, feeling, thinking, and responding to
the world, including the care needs of family members. Through microdevelopmental
processes (Ortner, 1994), culture affects individual responses to changes within the
family. In addition, through macrohistorical processes (Ortner, 1994), culture affects the
political and economic context of caregiving and, subsequently, the resources available to
assist families in fulﬁlling their caregiving functions. The social cultural environment
includes both the institutional structures that give form to society and the shared
lifestyles, customs, beliefs and practices that add substance to a particular group of
people at a particular historical time and place (Germain and Bloom, 1999).

Anderson and Carter (1999) have suggested several analytic dimensions of
culture, including technology, language, and systems of social relations, or caring.
Caring, they state, “involves both an emotional disposition and caring labor...a practice in

which both thought and action are integrated around central aims or goals” (p. 64). Such

79

 

integration was observed in families utilizing either the primary caregiving approach or a
team caregiving approach, although the team approach required a higher level of
integration and coordination of efforts among multiple caregivers. Caregiving requires
the intellectual awareness of a need and sufﬁcient motivation to respond to that need, as
well as the physical ability required to perform the necessary labor. Furthermore, each of
these areas--awareness, motivation, ability-~represents internal resources necessary for
the optimal functioning of caregiving systems. There is tremendous diversity among and
within families regarding the capacity to integrate awareness and action to produce caring
behaviors.

Levine (1999) developed a matrix that outlines the intersection between family
capacity and care recipient need. The matrix is based on indicators of high, moderate, and
low family caregiving capacity. These indicators include intangibles such as family
dynamics and culture as well as the number of people available to provide care, economic
resources, and other family responsibilities. Caregiving capacity can then be compared to
the level of identiﬁed need. Furthermore, Levine suggested that the gap between need
and capacity should serve as a guide for targeting services and supports to families.

Impliczaioﬁns for Practice

As stated in Chapter 1, the ﬁndings reported here hold implications for every level
of social work intervention with aging families, including the micro, mezzo, and macro
levels of practice. At the micro level, it is essential that medical social workers, case
managers, and others responsible for developing care plans with elders remain sensitive
to both the strengths and limitations of family caregivers. Placing unreasonable demands

on families may jeopardize the well being of caregivers and care recipients alike. At the

80

mezzo level, identiﬁcation and mobilization of caregiving networks within families and
communities may help to decrease the burden experienced by primary caregivers. This in
turn could result in more positive outcomes for both caregivers and care recipients. For
example, female caregivers may be able to maintain a higher level of community
involvement, including labor force participation, if they are viewed as part of a
caregiving team rather than as primary caregivers. This also could help to improve the
economic status of middle aged and older women (Wood, 1994).

At the macro level, policy analysts and program developers must consider the
needs of family caregiving systems rather than focusing exclusively on either primary
caregivers or care recipients. As mentioned in Chapter 2, much of the research addressing
family caregiving has focused on the negative effects experienced by primary caregivers
of dementia patients. While this is a legitimate area of concern, the time has come to
broaden the focus to include alternatives to primary caregiving and to consider the
potential for positive as well as negative outcomes. In addition, the care needs of
individuals with physical as well as cognitive limitations are deserving of consideration.

It has also been noted that many scholars have called for additional qualitative
investigation of elder care issues. Although large-scale, quantitative studies have added
immeasurably to our knowledge of trends that occur within the population of those
providing care for older adults, they have also obscured the diversity of caregiving
experiences. Also, those experiences are often decontextualized by the standardized
measures necessary for quantifying information. Qualitative methods, including
ethnography, can help to restore the context of caregiving and to record the struggles of

families as well as the strengths gained through the process of providing care.

81

 

Furthermore, giving consideration to the effects of policies and programs on
informal caregiving systems may help to reduce the fragmentation found within the
current service delivery network and, subsequently, to reduce the frustrations experienced
by many caregivers as they interact with that network. In particular, there appears to be a
pressing need for systematic evaluation and improvement in the delivery of in-home
services for older adults.

Finally, this project has tested the compatibility of family ecology theory with
ethnographic methods of data collection and a hermeneutic, or interpretive, approach to
data analysis. Also, it has explored theoretical constructs such as “quality of care” and
“personal well being” from the subjective perspectives of participants, based on their
unique experiences. This has resulted in a deeper understanding of the functioning
caregiving systems as well as a better understanding of potential outcomes for caregivers
and care recipients alike. Two observations are of particular theoretical interest. First, the
evolution of roles within caregiving systems highlights the capacity of families to adapt
to the changing needs and capabilities of their members over time. Next, the blurring of
boundaries between formal and informal systems demonstrates dynamic interaction
between family caregiving systems and their environments as well as the creative
utilization of resources as families struggle to fulﬁll their caregiving ﬁrnctions.

Future Research Agenda

This project could be expanded by longitudinal follow—up with these same
families at two or three year intervals in order to gain a better understanding of the
evolution of informal caregiving systems. In addition, the study could be replicated in

other geographic areas to see whether similar patterns emerge. Furthermore, it could be

82

useful to expand the sampling pool to include families that are not actively utilizing
formal services to determine how their experiences may differ from those reported here.
Subsequent studies also could be strengthened by expanding the focus of inquiry to
include components of the ecosystem not yet addressed, such as the role of formal service
providers within caregiving systems and speciﬁc effects of the physical environment.
Finally, the special challenges confronted by members of ethnic minority groups merit
further exploration. Topics of inquiry should include the strengths often demonstrated by
such families as well as the problems they encounter, such as limited access to formal
support services. Health disparities experienced by various ethnic groups, such as the
high incidence of diabetes among Native Americans, should also be explored in relation
to the implications such disparities hold for informal caregiving systems. In the future,
caregiving research must focus on caregiving systems rather than primary caregivers.
Only then can we begin to build caregiving networks that not only provide quality care to

those in need, but also enhance the well being of those who care.

83

 

APPENDICES

84

Appendix 1

Memorandum of Introduction

From: Loretta Brewer
To: Whom it may concern
Re: Family Caregiving Research Project

 

The purpose of this memorandum is to provide you with information regarding a research
project being conducted by Loretta Brewer, a doctoral candidate at Michigan State
University. The project focuses on family caregiving relationships.

Mrs. Brewer is interested in talking with families who are currently providing care to
their elderly members. The recipients of such care should be at least sixty (60) years old
and living in the community rather than a nursing home. Separate in-home interviews
will be conducted with the care recipient as well as with all available family caregivers. A
cash payment of $10.00 will be provided for each completed interview. In addition,
information regarding services for older adults will be provided to each participant.

All responses will be treated with extreme conﬁdence and the identity of individual
participants will not be disclosed in any report resulting from the project. Ifyou are
interested participating, or if you need additional information, please contact the person
who gave you this memorandum. He or she will then put you in touch with Mrs. Brewer.

Thank you for your time and consideration.

85

 

Appendix 2

CONSENT FORM

Loretta Brewer, a doctoral candidate at Michigan State University, is conducting a
research project concerning family caregiving arrangements for older adults. The project
will involve conversations regarding your experience with caregiving within your family.
Participation in this project is likely to require one to two hours of your time.

Participation is voluntary. You may choose not to participate at all, or not to answer
certain questions, or to discontinue the conversation at any time without explanation,
penalty or loss of beneﬁts to which you are otherwise entitled. If you choose to
participate, all responses will be treated with extreme conﬁdence and your identity will
not be disclosed in any report resulting from the project. Your privacy will be protected
to the maximum extent allowable by law.

Potential risks of participation are minimal and may include mild emotional distress. On
the other hand, potential beneﬁts include a better understanding of family caregiving
relationships. In addition, each participant will receive information regarding services
available to older adults as well as a cash payment of $10.00 per completed interview.

If you have questions about this project, you may contact either Loretta Brewer, 299 W.
Parson Ave., Watervliet, MI 49098, 616-463-6063 or Professor Diane Levande, 254
Baker Hall, MSU, E. Lansing, MI 48824-1046, 517-432-3724. Ifyou have questions
about the role or rights of research participants, you may also contact David Wright,
Ph.D., University Committee on Research Involving Human Subjects, at 517-355-2180.

Your signature below indicates your voluntary agreement to participate in this project.

 

Participant’s Name (please print)

 

Participant Signature Date

86

10.

ll.

12.

13.

14.

Appendix 3.A

CARE RECIPIENT
INTERVIEW GUIDE

As people grow older, many ﬁnd that they need some assistance to get through the
day. Is that the case with you?

What kinds of assistance do you usually need? (use prompts as needed to identify
ADL and IADL needs)

Who usually provides that assistance? (identify by name and nature of relationship, if
possible—cross check with Participant Survey)

Does anyone else help out sometimes?

How long have each of these people been providing assistance? (estimated duration
of care)

Have others been involved in the past? (identify changes in caregiving system over
time) If “yes”, go to #7; if “no”, go to #8

Do you have any idea why these changes occurred?

Do you feel you are getting enough assistance to meet your needs? (If “yes”, go to
#10; if “no”, go to #9)

Are you ever without help when you need it?

What are some of the good things (or things that are important to you) about the care
you receive?

What things are most important to you? (If necessary, use attached list to prompt
identiﬁcation of elements of “quality care”)

In general, when you think about the assistance that you receive, would you say you
are “very satisﬁed”, “satisﬁed”, or “not so satisﬁed”?

What do you think would help to improve your situation?

Is there anything else you would like to add?

87

ATTACHMENT

Elements of “Quality Care”

Safety (feeling physically secure with caregiver)

Respect (feeling that patient’s dignity and self-worth are valued by caregiver)
Love (strong feelings of affection between caregiver and care recipient)
Consistency of care (feeling you can count on assistance from caregiver over time)
Individualized care (care is modiﬁed when needed to meet changing needs of care
recipient)

Effective communications (able to openly discuss issues related to care)
Minimum stress (caregiving arrangements help to reduce daily stress for recipient)
Providing “extras” (caregiver goes beyond basic necessities when providing care)

88

10.

ll.

12.

13.

14.

15.

Appendix 3.B

CAREGIVER
INTERVIEW GUIDE

I understand that you routinely provide assistance for (care recipient). I am interested
in hearing about what you have learned from that experience. How are you related to

(care recipient)? Would you describe the type of assistance you provide—the kinds of
chores or tasks you do?

Did you ever expect to be doing this kind of work?

How did you become involved?

About how many hours per week do you spend providing care for (care recipient)?
About how long have you been doing this work?

Has the amount of time you spend increased or decreased over time?

How has this affected your relationship with (care recipient)?

Who else is involved in caregiving? How has this affected your relationship with
them?

How has your commitment to caregiving affected the rest of your life, for example,
your relationships with friends or family members or your work?

When you think of your overall well being—your physical health, emotional status,
and important relationships—would you say things are better, worse, or about the
same as they were before you started doing this work?

What part of this work has been the most difﬁcult for you?

What is the best thing about doing this work?

When you think about the care provided to (care recipient) by yourself (and others),
would you say it is high, average, or low quality? How satisﬁed are you with what
you are doing?

What kinds of services and/or supports do you think would help to improve things for
you and (care recipient)?

Is there anything else you would like to add?

89

Appendix 4

PARTICIPANT SURVEY

Participant code #: Date:

 

Care Recipient: Age Gender

Please circle one response for each of the following items:

Nature of disability: 1. Physical 2. Cognitive 3. Combination
Severity of disability: 1. Minimal 2. Moderate 3. Maximum
Economic status: 1. Lower (less than $12,000 annual income)

2. Middle (between $12,000 and $24,000 annual income)
3. Upper (more than $24,000 annual income)

 

 

 

Ethnic identity: 1. African American 2. Hispanic 3. Native American
4. Caucasian 5. Other
Comments:
CaggiveﬂsL

 

Name/phone # Relationship Age Gender Tasks * Hrs. of care/wk.

 

 

 

 

 

 

 

 

 

 

 

 

 

*1. Medication management 2. Assistance with transfers or in-home mobility

3. Transportation 4. Housekeeping and/or laundry 5. Grocery shopping

6. Meal preparation 7. Feeding 8. Toileting 9. Dressing 10. Bathing 11. Money
Management 12. Other (please specify):

 

 

Duration of current caregiving system:

90

Duration of current caregiving system:
1. less than one month 2. one to six months 3. Seven months to one year 4. More than

one year

Are any formal services or programs being used in addition to family caregivers? If
yes, please specify the service or programs:

 

Comments:

 

91

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92

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