ABSTRACT

THE FORGOTTEN CAREGIVER IN THE VIRTUAL WORLD:

ONLINE DISCUSSION BOARDS FOR CAREGIVERS OF
WOMEN WITH BREAST CANCER

Heather Anne Salazar, M.A.

Department of Sociology
Northern Illinois University, 2010

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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
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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
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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

WOMEN WITH BREAST CANCER

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HEATHER ANNE SALAZAR

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©2010 Heather Anne Salazar

A THESIS SUBMITTED TO THE GRADUATE SCHOOL

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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

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a note will indicate the deletion.

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UMI 1480749
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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,

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

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 DEDICATION

To my Mom, for always believing in me.

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 TABLE OF CONTENTS

Page

Chapter

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

2. LITERATURE REVIEW ...................................................................... 7

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Theories of Social Support ............................................................ 7

Caregivers’ Experiences ................................................................ 12

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Online Support Groups .................................................................. 18

Cancer Patients’ Use of Online Discussion Boards ...................... 22

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Breast Cancer Patients’ Use of Online Discussion Boards ........... 25

General Caregivers and Online Discussion Boards....................... 27

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Cancer Caregivers and Online Discussion Boards ........................ 28

Breast Cancer Caregivers and Online Discussion Boards ............. 29

3. METHODS ............................................................................................ 31

Qualitative Data Analysis .............................................................. 39

Quantitative Data Analysis ............................................................ 42

4. RESULTS .............................................................................................. 44

Demographics of Sites ................................................................... 45

Forum and Online Discussion Board Usage ................................. 48

Flow of Online Discussion ............................................................ 50

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Chapter Page

“Validate My Feelings, Please” and “Help Me Help Her” ........... 52

“I Care About You” ....................................................................... 56

“I’m the Expert” ............................................................................ 60

“It’s Not About You, It’s About Me” ............................................ 64

“Okay, Sorry” and “I’ll Care for You Too” .................................. 67

“Burden…But Whose Burden?” ................................................... 71

“Experts to Newbies” .................................................................... 74

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Gender Differences Among Caregivers ........................................ 76

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

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Final Thoughts ............................................................................... 81

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5. DISCUSSION........................................................................................ 86

Theoretical Implications ................................................................ 88

Caregiver Implications .................................................................. 91

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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

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207,090 and new cases of in situ breast cancer (i.e., a malignant tumor in the

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
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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
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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 patient’s

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 patient’s 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 patient’s life. According to the American Cancer Society

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

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

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
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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
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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),

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with the number of individuals seeking health information on the internet being around

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
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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
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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-to-

face 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

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

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

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;
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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.

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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 Alzheimer’s, 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.

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2004; Klemm and Wheeler 2005). In addition, much of the research that has been done

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
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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
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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

caregivers utilize online discussion boards.

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 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

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(1987:138), social support has a direct impact on stress and health, as well as a

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
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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

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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).

Cobb’s 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 person’s 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

individual’s life and network who buffer the effects of stress and meet basic social

needs.

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

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
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(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
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doctor’s 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 support…is perceived

availability of thoughtful, caring individuals with whom to share one’s 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

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et al. 1985; LaRocco et al. 1986). Exchanging information about treatment options in

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
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support can be defined as “expression of agreement with a person’s beliefs or feelings”

(Kessler et al. 1985:542). An example of appraisal support would be to validate a cancer

caregiver’s beliefs that they are stressed by their caregiving roles.

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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

individual’s social network can be used to measure social support (Thoits 1982).

Having few sources of social support can have a damaging impact on one’s 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.

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

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
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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
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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 one’s 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 caregiver’s 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

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2003; House et al. 1988). In relation to the present study, online support groups for

caregivers of women with breast cancer can protect caregivers from the negative effects
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that stress may have on their health.
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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
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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

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categories may be examples of emotional and/or appraisal support). Instrumental

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
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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
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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

1960’s 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

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rate and at fifteen years after diagnosis women have a 75% survival rate (American

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
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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
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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

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

manifest itself in symptoms of tiredness and worrying (Klemm and Wheeler 2005).
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Caregiver distress may even remain after the patient’s distress has decreased (Golant
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and Haskins 2008), which further shows the need for support specific to caregiver’s

experiences.

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

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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

caregiver’s 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

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percent among caregivers who experience caregiver distress (Colvin et al. 2004).

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
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addition, issues of relationship equity may arise between the caregiver and the care-

recipient. 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,

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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 patient’s 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

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motivation to reduce another’s suffering can be a strong force for a caregiver to provide

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
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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).

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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.