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ABSTRACT

THE FORGOTTEN CAREGIVER IN THE VIRTUAL WORLD:


ONLINE DISCUSSION BOARDS FOR CAREGIVERS OF
WOMEN WITH BREAST CANCER

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Heather Anne Salazar, M.A.


Department of Sociology
Northern Illinois University, 2010
Robin Moremen, Director
Cassandra Crawford, Co-Director
Kerry Ferris, Co-Director

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This study analyzed the postings on online discussion boards for caregivers of
women with breast cancer. With one exception, no online discussion boards were found
dedicated to the sole use of breast cancer caregivers. Rather, caregiver-directed forums
were located on larger online discussion boards for breast cancer patients. Findings show
that patients co-opt these forums, directing attention to patients with breast cancer rather
than the needs of caregivers. Future research is necessary to better understand the
motivations of caregivers seeking advice on patient-focused caregiver-directed forums.

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NORTHERN ILLINOIS UNIVERSITY


DE KALB, ILLINOIS
AUGUST 2010

THE FORGOTTEN CAREGIVER IN THE VIRTUAL WORLD:


ONLINE DISCUSSION BOARDS FOR CAREGIVERS OF

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WOMEN WITH BREAST CANCER

BY

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HEATHER ANNE SALAZAR


2010 Heather Anne Salazar

A THESIS SUBMITTED TO THE GRADUATE SCHOOL

IN PARTIAL FULFILLMENT OF THE REQUIREMENTS


FOR THE DEGREE

MASTER OF ARTS
DEPARTMENT OF SOCIOLOGY
Thesis Director:
Robin Moremen
Thesis Co-Directors:
Cassandra Crawford
Kerry Ferris

UMI Number: 1480749

All rights reserved


INFORMATION TO ALL USERS
The quality of this reproduction is dependent upon the quality of the copy submitted.

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In the unlikely event that the author did not send a complete manuscript
and there are missing pages, these will be noted. Also, if material had to be removed,
a note will indicate the deletion.

UMI 1480749
Copyright 2010 by ProQuest LLC.
All rights reserved. This edition of the work is protected against
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ACKNOWLEDGEMENTS
I wish to express my sincere appreciation to my thesis director, Dr. Robin
Moremen, for her assistance, guidance, and mentorship in every step of this project. I
would also like to thank my co-directors, Dr. Cassandra Crawford and Dr. Kerry Ferris,

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both of whom I am indebted to for their insights and suggestions for this thesis.

DEDICATION

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To my Mom, for always believing in me.

TABLE OF CONTENTS
Page
Chapter
1

2. LITERATURE REVIEW ......................................................................

1. INTRODUCTION .................................................................................

Caregivers Experiences ................................................................

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Theories of Social Support ............................................................

18

Cancer Patients Use of Online Discussion Boards ......................

22

Breast Cancer Patients Use of Online Discussion Boards ...........

25

General Caregivers and Online Discussion Boards.......................

27

Cancer Caregivers and Online Discussion Boards ........................

28

Breast Cancer Caregivers and Online Discussion Boards .............

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3. METHODS ............................................................................................

31

Qualitative Data Analysis ..............................................................

39

Quantitative Data Analysis ............................................................

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4. RESULTS ..............................................................................................

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Demographics of Sites ...................................................................

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Forum and Online Discussion Board Usage .................................

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Flow of Online Discussion ............................................................

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Online Support Groups ..................................................................

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Page

Chapter

52

I Care About You .......................................................................

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Im the Expert ............................................................................

60

Its Not About You, Its About Me ............................................

64

Okay, Sorry and Ill Care for You Too ..................................

67

BurdenBut Whose Burden? ...................................................

71

Experts to Newbies ....................................................................

74

Validate My Feelings, Please and Help Me Help Her ...........

76

Online Benefits ..............................................................................

78

Final Thoughts ...............................................................................

81

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Gender Differences Among Caregivers ........................................

5. DISCUSSION........................................................................................

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Theoretical Implications ................................................................

88

Caregiver Implications ..................................................................

91

Limitations .....................................................................................

93

Future Research .............................................................................

95

Conclusion .....................................................................................

97

REFERENCES ..................................................................................................

98

CHAPTER ONE
INTRODUCTION

Breast cancer affects numerous women each year. According to the American
Cancer Society (2009), one out of four cancers that are diagnosed in women is breast

cancer. Estimates for 2010 put new diagnoses of invasive breast cancer in women at
207,090 and new cases of in situ breast cancer (i.e., a malignant tumor in the

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premetastatic stage) at 54,010; additionally, breast cancer is expected to claim the lives

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of 39,840 women in 2010 (American Cancer Society 2010:9). Moreover, in January


2006 it was estimated that the number of women alive with breast cancer (cancer-free
and living with cancer) was 2.5 million women (American Cancer Society 2009:2).
While incidence rates for women with invasive breast cancer between 1999 and
2006 have been decreasing by about 2.0% per year, prior to that period, there was an
increase between 1994 and 1999 by 1.6% per year (American Cancer Society 2009:3).
Additionally, incidence rates for in situ breast cancer have remained constant for white
women, while increasing for African American women since 1988 (American Cancer
Society 2010:9).
With this high incidence of breast cancer, it is important to consider the impact
that this disease not only has on patients, but the significant individuals in the patients
life as well. While cancer seems to primarily affect the patients, one cannot ignore the

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implications that it has for family and friends (Matthews 2003) as cancer will impact
nearly three out of four families (American Cancer Society 2007).
Family members and friends become a crucial and important component of the
breast cancer patients experience. Some even become caregivers, and the number of
cancer caregivers is at least equal to the number of individuals suffering from cancer
(American Cancer Society 2007). It is important to understand who a caregiver is and
what role they play in a patients life. According to the American Cancer Society

(2004), A cancer caregiver is an individual who has a personal connection and


commitment to someone with cancer and provides care outside of a hospital setting (p.

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2). A breast cancer caregiver is therefore an individual who typically is providing

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unpaid care, usually in a home setting, to a woman who has been diagnosed with, or is
being treated for, breast cancer. This can include anyone who is involved in the life of a
woman with breast cancer: a spouse, children, parents, aunts, siblings, friends, or even
colleagues. The care may also extend outside the home; this is seen in instances when
caregivers provide transportation, run errands, or simply spend time with the patient,
caring for them outside of the home.

Caregiving can be a very rewarding yet stressful role to assume. Many


caregivers feel burdened by the responsibilities associated with this special role, with
thirty-five percent of caregivers feeling overwhelmed (American Cancer Society
2007:8). Additionally, caregivers often experience stress that may be a result of juggling
their caregiving responsibilities with outside requirements; therefore, any outlet that
helps caregivers gain the support that they need is definitely something of interest
(Smyth et al. 2007). It is clear that support should not be limited only to patient care;

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attention needs to be paid to caring for the caregiver as well, as social support can aid
an individual when they encounter a stressful event in their lives (Bloom and Kessler
1994).
For the past thirty years, cancer support groups (CSGs) have existed in mostly
face-to-face group settings (Klemm et al. 2003). That has all changed with the
increasing rates in which the internet is being used for day-to-day activities. The
internet is regularly used by individuals to seek information (Monnier, Laken, and

Carter 2002), specifically health information (Colvin et al. 2004; James et al. 2007),
with the number of individuals seeking health information on the internet being around

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seventy-three million (Klemm et al. 2003:140). According to Esquivel, Meric-

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Bernstam, and Bernstam (2006: 940), around fifty percent of all female breast cancer
patients have relied on the internet as a source of information about their disease.
In addition to using the internet for information seeking, many individuals
participate in internet cancer support groups (ICSGs), which have been increasing in
number (Klemm et al. 1999; Klemm et al. 2003). Similar to face-to-face support groups,
ICSGs present opportunities for shared experiences, social support, advocacy for
patients, and possibilities for informational exchange (Klemm et al. 1999; Klemm et al.
2002; Klemm et al. 2003). The numbers of Americans who have used online support
groups is staggering, with about 90 million Americans having done so (Bowling et al.
2006:390).
The benefits of internet support groups not only apply to cancer patients. To
name a few, caregivers of older adults (see Colvin et al. 2004), caregivers of individuals
with mental illness (see Perron 2002), and caregivers of breast cancer patients (see

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Radin 2006; Seale 2006; Sharf 1997; Weber and Solomon 2008) can also participate.
One of the many reasons why online support groups are beneficial to caregivers is
because they allow them to participate at their convenience rather than go to a face-toface meeting. This is important because some caregivers lack the resources and time
that may be needed to attend social support group meetings face-to-face (Golant and
Haskins 2008). Additionally, when compared to face-to-face support groups, users of
online support groups are more likely to find others who are like them or have

than face-to-face support groups (Sharf 1997).

experienced similar situations, as ISGs may have more participants and be larger in size

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Online support groups provide the opportunity for caregivers to obtain social

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support from the comforts of their own home and at their own pace (Klemm et al. 2003;
Perron 2002; Sharf 1997). Support for breast cancer caregivers is needed, and online
discussion boards offer a convenient and available outlet through which they can obtain
support from other breast cancer caregivers.
Research to date has been severely limited on this topic. Studies focusing solely
on the effects of online support groups have been underdeveloped (Sullivan 2008),
specifically as it pertains to online cancer (Klemm 2003), caregiver (Colvin et al. 2004),
and cancer caregiver support groups (Klemm and Wheeler 2005). In a literature search
for any articles dealing with cancer and online support groups, Klemm et al. (2003:137)
found only nine articles that met the criteria, and in addition, few studies succeeded in
evaluating if online support groups provide any short- or long-term benefits (Klemm et
al. 2003:136). The literature review by Klemm (2003) found online support groups for
cancer were most often used for information seeking and information giving. In

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addition, through online cancer support groups, patients were helped to cope with
cancer (Klemm 2003). However, the paucity of studies demonstrates that a gap in the
literature exists.
Much of the caregiver research that does exist focuses specifically on caregivers
of people with Alzheimers, with a lack of attention paid to caregivers of people with
cancer (Matthews 2003). More research is especially needed when it comes to the effect
that online support groups have for caregivers. Not many studies are directed solely

towards the investigation of caregivers use of online support groups (Colvin et al.
2004; Klemm and Wheeler 2005). In addition, much of the research that has been done

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lacks a theoretical basis and a sociological focus; findings are aimed mostly at practical

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outcomes, such as those directed towards nurses (see Klemm et al. 2003; Klemm and
Wheeler 2005; Sullivan 2008; White and Dorman 2000). There were no articles that
focused solely on breast cancer caregivers use of online support groups. The articles
that were found mixed the breast cancer experiences of patients with caregivers or
focused only on breast cancer patient use of online support groups (see Esquivel et al.
2006; Radin 2006; Seale 2006; Sharf 1997; Weber and Solomon 2008).
This study seeks to further explore the way that breast cancer caregivers use
online support groups as sources of social support. The following research question is
the focus of this study: How do breast cancer caregivers use online discussion boards as
sources of social support? In addition, I will also examine gender differences in breast
cancer caregivers use of online discussion boards. In particular, how do male and
female caregivers of women with breast cancer use online discussion boards as sources
of social support differently?

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This study will first examine theories of social support in order to gain insight
into how breast cancer caregivers may use online discussion boards as sources of social
support before moving on to an in-depth discussion of what online support groups have
to offer. In addition, this study will examine the literature on ways that cancer patients,
breast cancer patients, general caregivers, cancer caregivers, and breast cancer

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caregivers utilize online discussion boards.

CHAPTER TWO
LITERATURE REVIEW
Theories of Social Support

Theories of social support can be used to explain the direct and indirect benefits

that social support has on health and well-being and stress. According to House
(1987:138), social support has a direct impact on stress and health, as well as a

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buffering relationship between stress and health. It is important to first have a clear

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definition of what constitutes social support before moving on to the effects social
support has on health and stress.

Cobb (1976) conducted a landmark study that defined social support. He

defines social support as the following: Social support is defined as information


leading the subject to believe that he is cared for and loved, esteemed, and a member of
a network of mutual obligation (p. 300). Some refinement of this definition may be
useful. His first characteristic regarding caring and love can be refined to mean
emotional support, his second characteristic regarding value and esteem can be seen as
esteem support, and his third characteristic of social support can be viewed as a type of
informational support that is shared (Cobb 1976:301).
Cobbs definition of social support contains three essential features that are
common in other social support theorists definitions of social support. Kessler, Price,

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and Wortman (1985) view social support in a similar light as Cobb, with social support
referring to the mechanisms by which interpersonal relationships presumably protect
people from the deleterious effects of stress (p. 541). Thoits (1982) classifies social
support as the degree to which a persons basic social needs are gratified through
interaction with others (p. 147). These definitions have several commonalities. They
all establish that social support is influenced by interactions with people in the
individuals life and network who buffer the effects of stress and meet basic social

needs.
Embedded within these definitions are different types of social support that are

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critical to the theory of social support. Four types of social support have been identified:

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instrumental support, emotional support, informational support, and appraisal support


(Bloom and Kessler 1994; LaRocco, House, and French 1986). Instrumental support
refers to actual physical support that may be provided, which may translate into goods
and services (Kessler et al. 1985; Thoits 1982). For example, bringing someone to a
doctors appointment, or bringing them food in bed, would be situations in which
instrumental support is provided.

The second type of social support is emotional support. Emotional support refers
to empathy (LaRocco et al. 1986), affection (Kessler et al. 1985), or caring that occurs
between the individual and the agent providing social support (Bloom and Kessler
1994). As defined by Bloom and Kessler (1994), Emotional supportis perceived
availability of thoughtful, caring individuals with whom to share ones innermost
thoughts and feelings (p. 118-119). According to Thoits (1995), perceived emotional
support is beliefs that love and caring, sympathy and understanding, and/or esteem and

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value are available from significant others (p. 64). Emotional support appears to be
the most important type of social support as it seems to have the greatest implications
for health (LaRocco et al. 1986). An example of emotional support would be listening
to a patient and offering sympathy about what they are experiencing. Another example
would be a caregiver offering thoughts of well wishes to another caregiver who is
anxiously awaiting test results.
The third type of social support is informational support. Informational support

refers to the way that information is presented in interactions of social support (Kessler
et al. 1985; LaRocco et al. 1986). Exchanging information about treatment options in

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the face of a recent cancer diagnosis would be an example of informational support. The

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fourth type of social support is appraisal support (Bloom and Kessler 1984). Appraisal
support can be defined as expression of agreement with a persons beliefs or feelings
(Kessler et al. 1985:542). An example of appraisal support would be to validate a cancer
caregivers beliefs that they are stressed by their caregiving roles.
Also important to consider when understanding the theory of social support is
the effect that social structures and social networks have on social support. Living
alone, social network interactions, or rates of social contact all have implications for the
structure of support (Kessler et al. 1985:542). In addition, the size and availability of an
individuals social network can be used to measure social support (Thoits 1982).
Having few sources of social support can have a damaging impact on ones health
(House, Umberson, and Landis 1988). House (1987) believed that people are appealing
to informal social support more and more over time. We can see this in the

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characteristics of online support groups which can be considered a type of informal
social support where breast cancer caregivers go to seek different kinds of support.
Regarding health, social support can have a direct impact on health. Positive
social relationships, through which social support takes place, have direct positive
implications for health (House 1987; House et al. 1988). In addition, there is evidence
of a link between social support and mortality. People with lower levels of social
support have higher levels of mortality (Cohen and Wills 1985:311). Social support is

critical to the lives and health of individuals in society.


Social support has also been found to have a direct effect on stress (House 1987;

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Turner 1981). One of the ways that this occurs is through life changes. Certain life

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events can occur, which may bring with them an increase in the amount of stress that
one experiences (Kessler et al. 1985). According to Kessler et al. (1985), a
substantial minority of respondents between 20 and 40 percent do not recover fully
from the crisis despite the passage of time (p. 537). For example, this could pertain to
individuals who are bereaved after a loss. While recovery from stressful life events is
usually successful for most individuals (Kessler et al. 1985:532), lack of recovery can
have harmful implications for ones life, as more stress can lead to poorer health
(Weber and Solomon 2008). Emotional support in particular seems to be very effective
in reducing the negative effects of stress (Kessler et al. 1985). Additionally, according
to Wethingon and Kessler (1986), the support that individuals perceive they will receive
has greater implications for stress than the actual support that they receive. This has
implications for caregivers. If they believe that online support groups will provide them
with social support whether or not they actually do this may help to reduce some of

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their caregiver stress. However, in the current study of online discussion boards it
may not be possible to ascertain caregivers perceived notions of emotional support.
Along with providing a direct effect on stress and health, social support
mediates the relationship that exists between stress and health. This means that the
negative effects of stress may have less of an impact on health when they are moderated
by social support (LaRocco et al. 1986:202). Social support therefore acts as a buffering
mechanism that protects individuals experiencing stressful life events from negative

consequences on their health (Cohen and Wills 1985; Freund, McGuire, and Podhurst
2003; House et al. 1988). In relation to the present study, online support groups for

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that stress may have on their health.

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caregivers of women with breast cancer can protect caregivers from the negative effects

Social support does seem to have some marital and gender differences. Rates of
mortality for individuals who are married are lower when compared to those who are
not married (Freund et al. 2003; House et al. 1988). Social relationships, through which
social support occurs (House 1988:302), can also make a difference depending on
whether the individual is a man or woman. According to House et al. (1988), social
relationships are more beneficial for men than for women, but there are some
distinctions to be made. On one hand, the implications of marriage on health are
stronger for men than for women. Men seem to benefit more from the effect of marriage
on health than do women, resulting in more positive effects on their health for men who
are married (House et al. 1988). Additionally, it seems that it is relationships with
women that are most beneficial. As stated by House et al. (1988), Thus, both men and
women seem to benefit more from relationships with women than relationships with

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men (p. 300). It may just be possible that women are more practiced than men when
it comes to providing effective social support (House 1987).
Previous literature has shown that posted messages by participants of online
support groups usually fall into several distinct categories (see Klemm and Wheeler
2005; Perron 2002; Radin 2006; Sharf 1997; Sullivan 2008; Weber and Solomon 2008).
These categories are very similar to the types of social support mentioned by House
(1987) despite the lack of a theoretical focus in this work. They include informational

support, emotional support, coping, shared experiences, and hope (the latter three
categories may be examples of emotional and/or appraisal support). Instrumental

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support is clearly lacking in online support groups because members may not live in

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close proximity to one another as online support groups are not geographically
restricted. This study will examine the postings made in online support groups to
determine whether or not, and to what degree, they correspond with the four types of
social support previously mentioned. Also, they will be examined for whether or not
participants are gleaning possible health benefits, reduced stress, or improved health
from a decrease in stress from their participation in online support groups in an effort to
qualitatively evaluate the possible direct and/or indirect effects of this method of social
support.
Caregivers Experiences

The role that caregivers play in the lives of cancer patients is an important one.
In addition, caregiving can be a long process. Due to increased technologies and earlier
detection, people are living longer and caregivers are spending more and more time

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caring for people with cancer (Bernard and Guarnaccia 2003; Golant and Haskins
2008).
In relation to breast cancer, the number of breast cancer survivors passing the
five-year survival rate has been growing since 1975 (National Cancer Institute 2009).
According to American Cancer Society (2010:11), five years after a diagnosis of breast
cancer, women have a 90% survival rate. Compared to the five year survival rate in the
1960s of only 63%, this is a twenty-seven percent increase, resulting in more women

living longer after diagnosis. At ten years after diagnosis women have an 82% survival
rate and at fifteen years after diagnosis women have a 75% survival rate (American

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Cancer Society 2010:11). This increase in survival rates and improved longevity may

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create the possibility for additional strain on caregivers that persists over a long period
of time.

Caregivers act as the agents of social support for women with breast cancer,
providing much needed support. From the moment of diagnosis, through treatment and
recovery, breast cancer patients may rely on their caregivers for support, aid, and help
with coping (Weber and Solomon 2008). While women with breast cancer are adjusting
to their new roles and identities, caregivers are doing the same. Caregivers must learn
how to adjust to their new role as caregiver when a family member is diagnosed
(Sullivan 2008). Caregiving role strain and the addition of new caregiving roles can
have an impact on well-being, possibly due to the fact that caregivers are now trying to
juggle multiple roles (Bernard and Guarnaccia 2003). This can have severe implications
for older caregivers who may be lacking the necessary resources to manage their new
role as caregiver (Bernard and Guarnaccia 2003).

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The difficulty in adjusting to this new role can put the caregiver at risk for the
negative effects of stress. According to Golant and Haskins (2008:421), distress can
impact as many as seventy-six percent of caregivers on a regular basis. This may occur
due to the fact that many cancer caregivers put the needs of the patient ahead of their
own needs (Golant and Haskins 2008). This caregiver distress, which tends to impact
women more than men, is often equal to or greater than the distress felt by the one
receiving care (Matthews 2003).

The distress experienced by caregivers often has no place to go. Many


caregivers suppress this distress and anxiety (Golant and Haskins 2008), which can

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manifest itself in symptoms of tiredness and worrying (Klemm and Wheeler 2005).

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Caregiver distress may even remain after the patients distress has decreased (Golant
and Haskins 2008), which further shows the need for support specific to caregivers
experiences.

Caregivers may also experience a sense of burden or caregiver burnout.


Caregiver burden can be objective: for example, dealing with finances or transportation
issues, or subjective, such as feelings of guilt or anger (Klemm et al. 2005). It is
important to note that caregiver burden is not limited to spouses; rather, siblings as well
as parents of ill family members may experience worry, fear, and feelings of objective
burden (Rauktis, Koeske, and Tereshko 1995). These feelings of stress and burden can
lead to caregiver burnout, which frequently impacts caregivers, and may present as
physical or emotional problems (Golant and Haskins 2008). According to the American
Cancer Society (2004), Caregiver fatigue or burnout can be brought on by the physical

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and emotional aspects of caring for a loved one with cancer (p. 3). This
demonstrates another reason why social support is essential to the lives of caregivers.
In addition to suffering from caregiver burnout, caregiving can impact a
caregivers health. There is an increased risk that cancer caregivers will develop health
problems of their own due to caregiving (Golant and Haskins 2008:421). Klemm and
colleagues (2005:39) discovered there was a higher mortality rate for caregivers who
were between the ages of sixty-six and ninety-six compared with members of their

cohorts who were not caregivers. This risk of mortality can be as high as sixty-three
percent among caregivers who experience caregiver distress (Colvin et al. 2004).

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The relationship between a caregiver and a patient can be a complicated one.

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While taking care of the patient, a caregiver must also take care of themselves. In
addition, issues of relationship equity may arise between the caregiver and the carerecipient. That is, the give-and-take, or exchange, or mutual obligation occurring
between partners in a relationship, changes when there is an onset of illness (Kuijer,
Buunk, and Ybema 2001:268). When two partners are both healthy, the exchange
usually flows in both directions, benefiting both partners; there is an inherent mutuality.
However, when one partner is ill, the healthy partner may be contributing more to the
relationship, in terms of household upkeep, emotional support, and care of the partner
who is ill (Kuijer et al. 2001). The contributions of the patient, on the other hand, tend
to decrease in these situations, causing the patient to feel overbenefited and the
caregiver to feel underbenefited as a result of the inequities in the relationship (Kuijer
et al. 2001:268). However contrary to this belief, Kuijer and colleagues (2001:278)

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found that partners in their study did not feel underbenefited, which may be due to
the fact that partners account for the patients condition.
Care provided by a caregiver may come from a place of compassion. Caregiver
compassion arises when the caregiver recognizes that another is suffering and feels
distress about it. According to Schulz and colleagues (2007), compassion occurs when
(a) there are affectional ties between two individuals, (b) there is an awareness of
suffering, (c) this awareness generates distress and negative affect in the observer, and

(d) the observer is motivated to reduce or eliminate the observed suffering (p. 7). This
motivation to reduce anothers suffering can be a strong force for a caregiver to provide

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care and is a type of altruistic compassion (Schulz et al. 2007:7) whereby their motives

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are not personal, but for the good of another. Additionally, caregivers may be motivated
to provide care to make themselves feel better about themselves or to make themselves
appear better to others, both of which are motivated by egoistical desires for praise and
reward (Schulz et al. 2007:7).

The effects of caregiving can also vary depending on the relationship between
the caregiver and the care-recipient. According to Marks, Lambert, and Choi
(2002:665), providing nonkin care to someone with whom the caregiver is not related
provides the most benefits for the caregiver. They found when there was a low level of
obligation to care, as there is when the relationship is not characterized by familial
expectations (therefore, nonkin), the caregiver experiences the most beneficial effects
on well-being and development (Marks et al. 2002:665). This was especially true for
women; the study concluded that the benefit for women included personal growth and
autonomy.