EVALUATION OF THE AFTER CANCER CAREGIVING EXPERIENCE

A masters project presented tothe Faculty of Saybrook Graduate School and Research Center

in partial fulfillment of the requirements for the degree ofMaster of Arts (M. A.) in Marriage and Family Therapy

byAmie S. Lefort

 

 

 

 

 

 

 

San Francisco, CaliforniaJuly 2005

Approval of the Masters Project

EVALUATION OF THE AFTER CANCER CAREGIVING EXPERIENCE

 

This masters project by _________Amie S. Lefort __________ has been approved by the committee members below, who recommend it be accepted by the faculty of Saybrook Graduate School and Research Center in partial fulfillment of requirements for the degree of

Masters of Arts in Marriage and Family Therapy

 

 

Masters Project Committee:

__________[Signature]__________ ____________________

Ron Fox, Ph.D. ________

 

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Abstract

EVALUATION OF THE AFTER CANCER CAREGIVING EXPERIENCE

Amie S. Lefort

Saybrook Graduate School and Research Center

This project consists of a review of the literature on posttraumatic growth and the

after cancer caregiving experience. The literature on cancer caregiving shows that

interventions for this specific population should target the development of a narrative,

improving communication skills, re-defining normal, and coping skills for grief and

depression. The literature review is used to develop a series of group therapy session

targeted at helping caregivers once their role has ended after cancer. The proposal for the

group therapy sessions is grounded in the theory of posttraumatic growth.

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Table of Contents

Introduction..........................................................................................................................1

Background..........................................................................................................................1

Definition of Terms..............................................................................................................2

Statement of the Issue..........................................................................................................3

Literature Review.................................................................................................................4

The Cancer Caregiving Experience.........................................................................4

Caregiver Burden.....................................................................................................7

Caregiver Health......................................................................................................9

After Caregiving....................................................................................................10

Elements of Posttraumatic Growth........................................................................11

Facilitation of Posttraumatic Growth.....................................................................12

Developing a Narrative..........................................................................................14

Communication......................................................................................................17

Redefining Normal and Self Image.......................................................................18

Group Possibilities.................................................................................................19

Proposed Program..............................................................................................................21

Session 1- Grief and Depression............................................................................23

Session 2- Developing a Narrative........................................................................24

Session 3- Rebuilding Social Networks.................................................................26

Session 4- Redefining Normal...............................................................................29

Limitations.........................................................................................................................31

Summary and Future Directions........................................................................................32

1

Introduction

The experience of being treated for cancer affects not only the person who is the

patient, but family members as well, as they often take on the role of caregiver. It has

been well documented in research that the burden of cancer caregivers is great (Given,

Given, Stommel, & Azzouz, 1999). There has been as significant amount of research

conducted about how to alleviate the burden of caregivers during the caregiving process

(Manne, Alfieri, & Taylor, 1999). Conversely, after a review of the literature, I have

found very limited information on support for caregivers after cancer. While research is

plentiful on the broad issues of bereavement or adjustment, I have found limited research

on suggested interventions for caregivers of cancer patients after caregiving (Jeffreys,

2005).

Background

The task of caregiving can come to an end once a cancer patient either passes

away or the disease is in remission and no longer requires treatment. Though the two

possible outcomes of caregiving seem very diverse, the caregivers facing the adjustment

are dealing with largely similar issues. Both groups are adjusting to no longer occupying

the position of caregiver while determining a new after cancer sense of normalcy. Many

caregivers experience social isolation as caring for their lived one becomes their

paramount concern (Bumagin & Hirn, 2001). The challenges of re-integrating into an old

social network or developing new social bonds will be similar for individuals adjusting to

both ends to caregiving. After caregiving, a person must additionally work to re-define

what normal is for them.

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Given that the majority of caregivers are partners of the patient or other family

members, the cancer experience impacts the functioning of the whole family (Lewis,

Woods, Hough & Bensley, 1989). After relying upon health care providers to meet the

demands of the disease, it remains the task of the therapist to assist with the mental health

issues that are frequently unaddressed. A study of 372 family members of cancer patients

showed that psychological needs were cited as the most frequently unmet needs (Houts,

Yasko, Kahn, & Schelzel, 1986). A 1997 national survey estimated there to be between

24 to 27.6 million adults that provide care to a family member or friend with a chronic,

disabling or terminal illness (Arno, 1999). While only a fraction of this estimated

population assist cancer patients specifically, this survey indicates that the issues of

caregiving face many Americans. The task of helping individuals after caregiving is

meaningful to the field of marriage and family therapy. Understanding the experience of

the individual requires an awareness of the marital and familial pressures that have

shaped their cancer challenge.

Definition of Terms

One of the key terms in this project is trauma, or traumatic stress. An event can

be described as traumatic if there is either an element of shock or if there is a perceived

lack of control (Tedeschi & Calhoun, 1995). Events that cause a person to experience

powerlessness have a greater likelihood of challenging one’s psychological wellbeing and

being considered traumatic (Tedeschi & Calhoun, 1995). A loved one’s cancer diagnosis

entails a sense of immediate shock, threat and concern as well as sense of fear about what

the diagnosis means for the future (Butler, Field, Busch, Seplaki, Hastings, & Spiegel,

2005). Beyond the shock of a loved one receiving a cancer diagnosis becoming a

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caregiver is additionally traumatic because a caregiver is given the task of assisting with

symptoms that often have few solutions. Caregivers will experience a sense of

powerlessness as they can offer only limited help with the difficult symptoms such as the

pain and fatigue caused by many cancer treatments (Given, Given, Stommel & Azzouz,

1999).

The definition of trauma used by the researchers Tedeschi and Calhoun does not

mirror that used by the DSM IV (4th ed: American Psychiatric Association, 2000). The

DSM requires that trauma involve events that have the possibility of serious bodily injury

or death to oneself or loved one (Aldwin, & Levenson, 2004). Most of the research on

posttraumatic growth focuses on the perceptions of the individual and not necessarily the

presence of bodily injury or death (Aldwin, & Levenson, 2004).

Another key term in this paper is posttraumatic growth. Two researchers,

Tedeschi and Calhoun (1995 & 1998), have produced much of the research on this

theory. Posttraumatic growth can be defined as a positive change that the individual

experiences as a result of the struggle with a traumatic event (Tedeschi & Calhoun 1999).

Posttraumatic growth does not entail achieving the same level of functioning as before

the traumatic event, rather, it indicates growth beyond what an individual has experienced

in the past. Posttraumatic growth is not necessarily a common response to trauma. Many

faced with trauma experience only the negative effects of trauma such as fear, anxiety,

depression and negative thoughts (Tedeschi and Calhoun, 1995).

Statement of the Issue

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With, or without the death of a loved one the process of cancer treatment and

caregiving can be considered a traumatic event. Caregivers can experience physical

health problems, depression, as well as a disruption in interpersonal relationships, social

life, work life and potential financial strain (Flaskerud, Carter, & Lee, 2000). Research

has shown that experiencing a traumatic event can provide a former caregiver the

opportunity for experiencing not only the negative interruption of trauma but also

positive new life perspectives, in other words, posttraumatic growth, as defined by

Tedeschi and Calhoun (1995). I will be reviewing the limited literature about the after

caregiving experience, including the adjustments of this time and information on the

burdens of caregiving. I will relate the literature on caregiving to posttraumatic growth

and then outline proposal for a series of group therapy sessions. The proposed therapy

sessions are grounded in the theory of posttraumatic growth and will work to help

caregivers grow after their cancer challenge. This program proposal includes ways to

help former cancer caregivers process their recent challenges and use them as a catalyst

growth.

Literature Review

The Cancer Caregiving Experience

Caregiving for a cancer patient is a multifaceted role ranging from simple

activities such as assisting with transportation, to the complex task of providing physical

care and recognizing reportable symptoms (Laizner, Yost, Barg, & McCorkle, 1993). A

caregiver who is not compensated for their services financially is labeled an informal

caregiver (Vitaliano, Zhang, & Scanlan, 2003). The majority of the research on

caregiving deals with a spouse or child informal caregiver. It is not uncommon to have a

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close friend or relative identified as the primary caregiver. Occasionally, a cancer patient

who has a spouse will have a different relative as the primary caregiver. Some cultures

dictate that it is most appropriate for a close female family member to be caregiver of an

ill female patient, even when a male spouse is still present (Coristine, Crooks, Grunfeld,

Stonebridge, & Christie, 2003).

Though the population of caregivers is diverse, many of the struggles they face

are similar (Grunfeld et al, 2004). Spouse, family or friend caregivers all face adjustments

to their current lifestyle. Additionally caregivers, who are spouses, family members, or

friends, face distressing emotions that can impact their mental and physical health

(Flaskerud, Carter, & Lee, 2000). Caregivers face an adjustment to increasing demands

when caregiving begins (Given & Given, 1998). Correspondingly, caregivers will face

adjustment to life without the demands of caregiving once this task comes to an end.

A study conducted by Barg et al. (1998) of 750 cancer caregivers found that 54

percent of caregivers live with the person they are caring for. Emotionally, this study

found that 85 percent of their sample reported they resented having to provide care.

Additionally 35 percent said they were overwhelmed by their care giving role. While

reporting such emotional problems the caregivers in this study reported benefits at the

same time. Of this group 97 percent reported their roles were important while 67 percent

said they enjoyed providing their role (Barg et al., 1998). The findings of this study

indicate the complicated emotional state of the cancer caregiver as they clearly face

emotional burdens yet, 81 percent of the participants stated they wanted to provide care

and could not live with themselves if they did not assume caregiving responsibilities

(Barg et al., 1998). Overall, the research from this study indicates that cancer caregivers

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recognize the importance of their role yet feel burdened by the responsibility at the same

time.

The stages of cancer caregiving can be divided into the initial phase, the treatment

phase, and the adaptational phase (Northhouse & Stetz, 1989). While the initial and

treatment phases of caregiving have been shown to be a times of great psychological

stress for caregivers the treatment phase has the greatest overall stress (Nijboer et al.,

1998). The area where caregivers appear to need help and support coping is the

adaptational phase and beyond. The adaptational phase involves a period of adjustment to

life after caregiving.

Overall, there is very little research about the after cancer caregiving experience.

Several studies have shown the possibility of cancer patients developing posttraumatic

growth (Collins, Taylor, & Skokan, 1990; Cordova, Cunningham, Carlson, &

Andrykowski, 2001). Despite the proven possibility for cancer patient posttraumatic

growth, there has not been a study about cancer caregiver posttraumatic growth

specifically. A study conducted by Manne et al. (2004) showed that posttraumatic growth

is not limited to the actual cancer patient but, can be experienced additionally by close

family members. Part of the cancer caregiving experience is to be present with a loved

one and share in the patient’s feelings of mortality and uncertainty. A caregiver and

patient experience cancer together, and face distress reactions to cancer that are closely

linked (Keller, Henrich, Sellschopp & Butel, 1996).

Green, Epstein, Krupnick, and Rowland (1997) have noted that life-threatening

illnesses differ from other traumatic stressors as the threat is not in the past, but are

primarily in the future. Butler et al. (2005) conducted a study including 50 partners of

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breast cancer patients and found evidence confirming the traumatic nature of being

confronted with a life-threatening illness in a loved one. One third of the 50 caregiver

participants in this study scored above the cutoff for clinical significance in overall

trauma symptoms (Butler et al., 2005). In this study the distress of the patients and

caregivers did not seem related, hence the distress was a function of individual coping

and experience and not a mirror of the patient’s distress. This study both shows that

having a loved one diagnosed with cancer is a traumatic event and that psychological

interventions are needed for caregivers specifically. Though this study evaluates the

experience of current caregivers, it can be expected that some of the trauma symptoms

would carry over to the after caregiving time period.

Caregiver Burden

Recent trends in health care have placed increasing burdens on cancer caregivers

(Pasacreta, Barg, Nuamah, & McCorkle, 2000). Caregivers experience both subjective

and objective burdens. During cancer treatment a caregiver’s objective burden includes

increasing tasks in response to the illness (Biegel, Sales, & Schulz, 1991). Subjective

burdens include the emotional cost or distress experienced by a caregiver of an ill loved

one (Sales, Greeno, Shear, & Anderson, 2004). The majority of caregivers report that

their responsibilities as a caregiver are a burden (Given, Given, & Kozachik, 2001).

Caregiver strain is related to the caregiver’s perception of their ability to manage and

resolve illness related stressors (Redinbaugh, Baum, Tarbell, & Arnold, 2003). Northouse

(1995) has shown that husbands of cancer patients often display levels of psychosomatic

complaints, anxiety, and depression that are just as high as their wives. Research by

Grunfeld et al. (2004) has shown that caregivers face great psychological burden both

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during and after caregiving. Such psychological burden after caregiving indicates that an

intervention dealing with the psychological component of caregiving has the potential to

be beneficial.

In their research on caregiving, Lazarus and Folkman (1984) found that the

overall stress of caregiving is related to the relationship between demands and resources

as perceived by the individual. This means that the individual’s unique perception of the

cancer-caregiving situation is more likely to explain the burdens of the caregiver than

sociodemographic or illness characteristics alone. Ferrario, Zotti, Massara and Nuvolone

(2003) found the problems associated with caregiving can not be separated from the

personality characteristics of the caregiver. This is an important part of the existing

research because it shows that psychological interventions should not be limited to those

caring for individuals with specific illness levels rather, the goal is to help those who

perceive their own burden to be great. The magnitude of the cancer stressor is better

measured by subjective assessment of threat than with medical indices of illness severity

(Cordova et al., 2001).

Similar to the literature on stress and burden, caregiver depression is not related to

number of hours per week spent on caregiving, patient diagnosis, or symptoms (Haley

LaMonde, Han, Burton, & Schonwetter, 2003). Objective measures of caregiver strain do

not predict depression rather, other life stressors such as caregiver health and negative

social interactions are predictors of caregiver depression (Haley et al., 2003). This

research additional shows the subjective nature of the psychological problems that

caregivers face.

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Burden differs from other psychological issues such as depression or anxiety as it

is related to the tasks that actually take place during caregiving (Given, Given &

Kozachik, 2001). Studies have shown a gender difference in the distress of the after

caregiving experience with females reporting more cancer related stress than males

(Matthews, 2003). While females report more stress, Tedeschi and Calhoun (1996) have

found that women are more likely to experience posttraumatic growth than men. This

could be related to different approaches to coping with traumatic events. Additional

research need to be conducted to understand the gender differences in posttraumatic

growth and coping styles (Calhoun & Tedeschi, 1998).

In summary, the literature on caregiver strain, burden, and depression indicates

that the negative components of caregiving are related to caregiver perception and

emotions more than quantifiable illness or time variables. Such findings point to the

importance of the subjective emotional experience of the caregiver. Overall, the research

clearly shows that caregivers face not only physically demanding objective burdens but

more subjective emotional burdens as well. After caregiving, the objective burdens are

removed, but for many the subjective emotional burdens linger and remain unresolved.

The period after caregiving is a time of adjustment and contemplation which can be the

optimal environment for posttraumatic growth.

Caregiver Health

Informal caregiving to people with cancer has been found to consistently have

negative affects on a caregiver’s health and well being (Given & Given, 1998). Jensen

and Given (1991) have found generalized fatigued and a wide variety of physical

problems were reported by cancer caregivers. One of the key issues caregivers need to

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face after cancer is to learn how to once again make their own health a priority. A

majority of caregivers consider their health to be poorer than that of their aged matched

peers (Moore & Spiegel, 2004). Carter and Chang (2000) note that 95% of caregivers

have severe levels of sleep disturbance, including poor sleep quality, disturbed sleep, and

reduced sleep time. Such altered sleep patterns contribute to the poor health and self-care

of caregivers.

Stress is a key issue in the caregiving process. Stress occurs when the demands on

a person exceed their adjustive resources (Lazarus, 1966). A study conducted by

Vitaliano, Zhang and Scanlan, (2003) reviewed 38 years of caregiver studies and found

that caregivers had higher levels of stress hormones than non-caregivers did. Such

findings did not indicate with certainty that caregiving is hazardous to one’s health but,

the research raises concerns about caregiver health. Often when faced with the more

objective burdens of caregiving, such as medical assistance, cancer caregivers neglect to

care for their own medical needs. After-caregiving interventions should focus on working

to have caregivers again focus on their own medical and emotional needs.

After Caregiving

Although there is limited research on the adjustment that caregivers face after

caregiving is over, Boerner, Schulz & Horowitz (2004) found that caregivers who report

some benefit in the caregiving experience also report higher levels of depression after

caregiving is over as they have lost a role that is meaningful to them. This study shows

the importance of evaluating both positive and negative factors in the outcome of the

after caregiving experience (Boerner et al., 2004).

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In cancer caregiving, loneliness has been associated with the constant demand for

care that leads to social isolation (Flaskerud, Carter & Lee, 2000). In one study of cancer

caregivers 54 percent visited friends and family less since assuming the roll of caregiver

(Barg, et all , 1998). Loneliness can additionally be related to the loss of reciprocity in the

relationship with the patient once symptoms become severe. A key dimension of

facilitating posttraumatic growth is social support. For a cancer caregiver this is

especially complex as caregivers become increasingly isolated.

Another factor that limits the use of social resources for caregivers is that

caregivers may not be ready to engage in social activity after caregiving as they combat

lingering anxiety and even depression. Anxiety can play a large roll in the after cancer

experience especially when the patient is in cancer remission as the patient and caregiver

fear future diagnostic tests that could show a recurrence (Matthews, 2003).

Overall the research clearly shows that caregiving poses a challenge to caregiver

mental and physical health. Caregivers frequently become over worked and burdened by

the demands of their job to the extent that they neglect to take care of themselves. While

there is limited research on the adjustments caregivers make after caregiving the research

points to the notion that caregivers must adjust to learning to put their own health as a

priority.

Elements of Posttraumatic Growth

There are five main domains of posttraumatic growth including increased

appreciation for life, closer relationships, a sense of increased personal strength,

identification of new possibilities for one’s life and growth in spiritual or existential

matters (Calhoun & Tedeschi, 2004). These five domains are used in the empirically

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validated Posttraumatic Growth Inventory (Calhoun & Tedeschi, 2004). According to the

model of post traumatic growth when presented with a traumatic event an individual is

challenged in three major ways including the management of emotional distress,

developing a narrative and a challenge of fundamental schemas, beliefs, and goals

(Calhoun & Tedeschi, 2004). After cancer, caregivers may face existential concerns that

force them to reevaluate their future and consider changes to life goals (Nijboer et al.,

1998). Such challenges to basic assumptions provide an opportunity for posttraumatic

growth. While caregivers may face existential concerns during caregiving this issue is

especially important after the objective burdens of caregiving are removed.

According to Calhoun and Tedeschi (1998) an event must be seismic enough to

shatter one’s basic assumptions about the world and themselves in order to trigger

growth. This necessary requirement of posttraumatic growth is very subjective as two

individuals could view the same event differently. Weiss (2004) studied the posttraumatic

growth of husbands of breast cancer survivors. The results of this study, which used the

Posttraumatic Growth Inventory, showed that husbands reported posttraumatic growth

and positive benefits three or more years after the initial diagnosis (Weiss, 2004). Social

support, positive qualities of the marital relationship and the wife’s level of posttraumatic

growth were all significantly associated with the husband’s level of posttraumatic growth.

The findings of this study suggest that interventions should be targeted towards

individuals who do not report a supportive social network (Weiss, 2004).

Facilitation of Posttraumatic Growth

Growth is possible in the face of trauma because the traumatic event causes the

individual to reevaluate their current life and make changes. Posttraumatic growth does

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not occur as a direct result of trauma, but rather it is the struggle with the aftermath of

trauma that determines the extent to which and individual experiences post traumatic

growth (Calhoun & Tedeschi, 2004). Posttraumatic growth describes the experience of

individuals whose development, at least in some areas, surpasses what was present before

the crisis or struggle occurrence. By this definition posttraumatic growth does not mean a

return to normal, but rather an experience of improvement (Calhoun & Tedeschi, 2004).

Manne et al., (2004) conducted a study of posttraumatic growth as it relates to the

couples experience of cancer. In this study they found that interventions targeted at

helping partners facilitate posttraumatic growth should focus on positive reappraisal.

Additionally, this study noted the importance of not suppressing intrusive thoughts about

a partner’s cancer. Interventions, according to the study, should focus on targeting partner

emotional expression as this can incite growth for both the partner and the cancer patient.

Cadell, Regehr, & Hemsworth, (2003) in a study of bereaved HIV/AIDS

caregivers found that spirituality and social support contribute positively to posttraumatic

growth. Though unpredicted, the researchers also determined that distress additionally

contributed to posttraumatic growth. This suggests that caregivers who have the greatest

amount of support from family and friends, have the strongest connections to spiritual

beliefs and practices, and who experience the highest levels of distress are more likely to

demonstrate the most benefit after trauma. This research is relevant to the experience of

cancer caregivers but it should be noted that the experience of caregiving for a person

with HIV or AIDS poses additional difficulties due to the stigma of this disease (Cadell,

Regehr, & Hemsworth, 2003).

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Calhoun, Cann, Tedeschi, & McMillan, (2000) conducted a study using college

students and found that event related rumination was related to the amount of

posttraumatic growth reported. The more rumination participants engaged in the greater

the degree of posttraumatic growth they reported. This is not true however when the

ruminations are primarily negative. An intervention wishing to promote posttraumatic

growth should encourage ruminations about the events and later encourage more positive

ruminations.

The timing of an intervention to help after trauma is vital. According to Calhoun

and Tedeschi (1998) a clinician working with a person who has experienced a traumatic

event should not work to encourage growth directly after trauma. The natural coping

mechanism of the client should be used to elevate some of the most severe pain before

the possibility of growth is mentioned to the client (Calhoun & Tedeschi, 1998). Given

the trauma of caregiving begins with the initial diagnosis and progresses throughout

treatment, the caregiver will have employed some coping mechanisms during the entire

caregiving trajectory. The period after caregiving is over should be the optimal time to

work on developing growth as the caregiver has been living and coping with the trauma

of cancer for some time.

Clinicians wishing to help clients with post traumatic growth need to work within

the client’s existing belief system and be sensitive to cultural perceptions (Calhoun &

Tedeschi, 1998). The clinician must also be willing to support the client’s perception of

thriving (Calhoun & Tedeschi, 1998). Thriving will likely be very different for the

individuals participating in a group therapy session. Each individual will have an

understanding of thriving means for them, such ideals may not fit into empirically

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validated ideals but the client should be supported in the pursuit of what works for them.

Even when the clinician can engender thriving by clinical intervention the clinician

should not attempt to rush such growth (Calhoun & Tedeschi, 1998).

Developing a Narrative

One of the key components to developing posttraumatic growth is the ability to

weave the story of trauma into the narrative of one’s life (Calhoun & Tedeschi, 1999).

This process usually takes an extended period of time. Developing a narrative involves

organizing information about oneself with the traumatic event to develop a full

understanding of how the trauma has impacted one’s life. Until a narrative is fully

developed the growth that comes from trauma could on be temporary in nature

(McAdams, 1993).

Pals and McAdams (2004) have outlined the two steps in narrative development

that leads to posttraumatic growth. The first step is to acknowledge openly and examine

deeply the disequilibrating impact that the traumatic event has had on one’s life. During

this time the negative emotions must be felt in order to make room for growth. This

involves feeling the pain that the traumatic event has caused. The second step is to

construct a positive ending to the narrative (Pals & McAdams, 2004). This method fits

within the theory of posttraumatic growth as the narrative must be positive in order to

facilitate growth (Calhoun & Tedeschi, 1999).

According to Davis, Nolen-Hoeskema and Larson (1998) it is important to make

the delineation that in order to find meaning in the experience of trauma one does not

have to make sense of the experience. Rather, one can find something positive about the

experience even when they are not able to make sense of it (Davis et al., 1998)

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Identifying the positive components of an event can help to reduce the feeling of distress

(Davis et al., 1998). Thus, the development of a narrative that looks towards positive

features helps an individual to cope with the after cancer experience. Caregivers can work

to develop a positive narrative while still wishing their loved one had not experienced

cancer.

One of the ways to develop a narrative is through journal writing. A study by

Ullrich and Lutgendorf (2002) found that when college students were instructed to

cognitively process the emotional aspects of their traumatic event, as they wrote journals,

they reported higher levels of growth. According to Ullrich and Lutgendorf (2002),

journal writing about a traumatic event with an emphasis on cognitive processing and

emotional expression leads to growth. Conversely, the same study found that journaling

that is negative in content can lead to negative health outcomes (Ullrich & Lutgendorf,

2002). The findings of this study are significant because it suggests that when instructed

to engage in cognitive processing individuals experience greater growth. The findings of

this study are relevant to the after cancer caregiving population who may be encouraged

to move on past their struggles too quickly, before they have had the opportunity to

process the events. With or without the death of a loved one a cancer caregiver might be

encouraged by others to move not dwell on cancer before they have spent sufficient time

processing the events and grieving their losses. As the findings of this study suggest

giving this population permission to dwell on the experience may be necessary to incite

growth.

Pennebarker has been a leading researcher in developing an understanding of the

therapeutic value of both written and oral disclosure. Pennebaker and Seagal (1999)

17

found significant health and psychological benefits in writing about trauma which serves

to organize complex emotional experiences. The findings of this research have been

found true for all types of age, gender, social class, culture, and personality type. An

important part of the findings include that individuals who used the most positive words

were able to get the most benefit. The findings of this study show that caregivers can

benefit from written disclosure as a means for developing a narrative of their experience.

According to Hooker, Monahan, Bowman, Frazier, & Shifren (1998) the process

of developing a narrative is directly related to the personality of the caregiver. Their

research indicates the interactive process of assigning meaning to events is heavily

influenced by personality variables. Personality influences the meaning people assign to

situations. Overall, despite the importance of the meaning making or narrative building

process little research has been conducted to determine how caregivers assign meaning to

caregiving (Ayres, 2000)

Communication

Research has shown that communication is a key competent in the development

of posttraumatic growth. Manne, Ostroff, Winkely, Coldstein, Fox, and Grana (2004)

found that emotional expression predicted post traumatic growth. In their study, husbands

of cancer patients who communicated their inner feelings about their cancer experience

showed higher levels of posttraumatic growth that lasted longer. Such findings are

relevant to the program proposal as this indicates the potential for benefits when

communicating with others.

Vess, Moreland, and Schwebel (1985) found that couples who discuss cancer

related emotions reported a better ability to negotiate roll changes in marriage. This sort

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of communication made the caregiving process easier for the carer and recipient. One

study conducted by Chekryn, (1984) showed that 30-40 percent of cancer patients and

their spouses reported that they did not discuss the cancer diagnosis. While the findings

of this study may be limited to the marital caregiver, it does show that despite the

psychological benefits to communication many are not communicating about their cancer

challenge. In a study conducted by Shields and Rousseau (2004) cancer survivors and

spouses reported difficulty communicating about cancer and an avoidance of cancer

related discussions. The above research shows that for many caregivers communication is

significant problem during caregiving. While not specifically shown in research one can

assume that communication problems do not end with cancer but extend to the post

cancer adjustment period.

Siegel, Raveis, Houts, and Mor (1991) conducted a study with 483 cancer

caregivers, 16 percent of which reported reducing their socializing a great deal. The

research showing the isolation of caregivers is important because social support is an

important part of the communication that leads to posttraumatic growth. If caregivers

face social isolation that continues past caregiving this could negatively impact their

chance for posttraumatic growth. The literature does not indicate give any information

about the social support that caregivers receive after they have finished caregiving.

Cancer caregiving impacts communication on a familial level. For some families,

levels of conflict increase while levels of cohesion and communication decrease when the

level of patient care required escalates (Allen, Goldscheider & Ciambrone, 1999). Studies

have suggested that family functioning decreases from the time of diagnosis to one year

after diagnosis (Northouse, Templin, Mood, & Oberst, 1998). This research indicates the

19

communication problems that caregivers experience often extended beyond the patient

and caregiver to the entire family.

Redefining Normal

Cella and Tross (1986) have proposed that adjustment, even for those successfully

treated, may be affected by cancer related stressors spanning the past, present, and future.

This stress can be related to residual traumatic reactions to receiving the diagnosis and

anticipatory stress from an uncertain future (Cella & Tross, 1986). This research points to

the significance of the post cancer adjustment period. Due to the demands of cancer and

caregiving many of the stressors experienced have not be emotionally processed. The

ability for caregivers to cope with the cancer challenge and after cancer adjustment is

related to the past current and anticipatory stressors (Butler, Field, Busch, Seplaki,

Hastings, & Spiegel, 2005). For caregivers past, current, and future cancer-related threats

become part of the everyday concerns and experiences of caregivers.

A study conducted by Cameron, Franche, Cheung, and Stewart (2002) found that

lifestyle interference was strongly correlated with emotional distress. The authors suggest

that maintaining some of the activities that were meaningful before caregiving can reduce

distress levels. Providing care can interfere with the caregiver’s ability to participate in

valued activities such as work, recreation, and social outings. An after caregiving

intervention can not impact the choices made during caregiving but discussing the loss of

meaningful activities can help the group members to identify and work towards ways

they want to shape their life after cancer.

Group Possibilities

20

Previous studies have shown that posttraumatic growth is facilitated by contact

with a person who experienced a similar trauma and perceived benefits from it (Weiss,

2004). Lechner and Antoni, (2004) have noted that there has not been a group based

intervention developed to promote posttraumatic growth. Bernard and Guarnaccia (2003)

found that resources available to caregiving families, such as support groups,

psychotherapy, and care assistance, are limited. Furthermore, their research shows that

interventions for caregivers while they are busy with the demands of their caregiving role

are largely viewed as an additional burden or task (Bernard & Guarnaccia, 2003). The

above research highlights the potential for a group based intervention that could be

helpful to caregivers after caregiving.

When planning a group intervention to target posttraumatic growth, it should be

expected that individuals will come to the group with differing levels of posttraumatic

growth (Lechner & Antoni, 2004). A product of posttraumatic growth is a changed

narrative of one’s life and cancer experience. The members of the group who have

developed their narrative before the group will benefit from the opportunity to share their

new understandings while group members who have are just beginning to develop their

narrative will benefit from exposure to others who are further along in the process

(Lechner & Antoni, 2004).

One of the benefits of the group setting is it allows members to test new

perspectives on their experience (Lechner & Antoni, 2004). Such testing of new

perspectives is part of the narrative development process. As group members discuss

beliefs and new perspectives they will benefit from doing so in an environment that is

supportive and genuinely understanding (Lechner & Antoni, 2004).

21

A study conducted by Pasacreta, Barg, Nuamah, and McCorkle (2000) found that

caregivers benefited from a group therapy intervention during the time of caregiving. The

researchers noted that recruitment and retention of participants for the free program was

very difficult as many of the participants who could not attend the three sessions noting

their caregiving roll as the reason. These points to the notion that despite the need for

psychological and educational programs to assist caregivers many can not utilize services

due to the demanding nature of the caregiving roll (Houts et all, 1986).

One caveat to posttraumatic growth theory that has been largely unexplored is

inaccurate reports of true change or growth. People who are dealing with cancer are often

taught that a positive attitude is the only way to survive cancer; because of this many

repress negative emotions (Lechner & Antoni, 2004). This may relate to caregivers who

could report positive growth based not on a process of contemplation or challenges but

based on the belief they should remain positive. In response to this issue it will be

important for a group based intervention to support participants in expressing their

feelings of loss, depression or grief.

Proposed Program

In order to help individuals deal with issues common to the after cancer

caregiving experience, I will outline a series of four group therapy sessions tailored to

this specific population. The format of this program will be grounded in the theory of

posttraumatic growth. The goal of the therapy sessions will be to heighten the

participant’s awareness of the components of their experience that have been a

challenging opportunity for growth. While caregivers could benefit from a psychological

intervention during caregiving, this would not be the appropriate time to work towards

22

posttraumatic growth (Weiss, 2004). In order to determine the effectiveness of the group

therapy sessions participants will be asked to take the empirically validated

Posttraumatic Growth Inventory at an intake interview (Calhoun & Tedeschi, 2004). This

scale will then be administered to each group member again at the end of the four group

sessions. This scale was developed by Calhoun and Tedeschi (2004) and has been

empirically validated to evaluate posttraumatic growth. Administering the test both

before and after the intervention will indicate if the therapy sessions are successfully

helping clients to work towards posttraumatic growth.

In developing posttraumatic growth, it is important for an individual to allow

themselves the opportunity to ruminate on or process their experience (Tedeschi &

Calhoun, 1999). The group therapy sessions will facilitate group rumination which will

likely lead to individual rumination. Rumination is not helpful when primarily negative in

content. Conversely, focusing on the positive aspects and the lessons of the experience

can lead to growth (Tedeschi & Calhoun, 1999). The supportive environment will

encourage the participants to be reflective of their experience.

In order to keep some of the group discussions positive the group facilitator

should prompt participants to express the positive aspects of caregiving while reflecting

about the challenges of the cancer caregiving experience. The research has shown some

of the positive aspects of caregiving to be a possibility for increased self-esteem and, a

closer relationship with the care recipient (Nijboer et al., 1998). The therapy sessions will

work to prompt individuals to not represses or ignore their experiences, but to work

through them. This will involve letting the participants reflect upon the negative aspects

23

of caregiving. A group of cancer caregivers may be one of the few places that caregivers

would be willing to discuss the negative experiences they had in caregiving.

The group therapy format proposed will be especially helpful as research has

shown that individuals who face traumatic events prefer to have the support of others

who have faced similar events in their lives (Tedeschi & Calhoun, 1995). Mutual support

groups can be very positive as other members in the group perceive changes and growth

in fellow members. It is expected that members of the group will be at varying stages of

posttraumatic growth before they join the group. The group members who are closer to

achieving posttraumatic growth will act as an inspiration to the other members who may

just be starting their journey. Additionally, the group format will be helpful as caregivers

benefit from the experience of helping others. Expectantly there would be a variety of

participants with some individuals having a greater time lapse and more growth since

their end to caregiving.

While the group sessions will have some positive orientation this must be

carefully done. When working with people who are facing a traumatic event it is not

appropriate to suggest that they must find benefits in their experience. Such suggestions

can be offensive, minimize the individuals experience and interfere with the grief process

of the individual (Tedeschi & Calhoun, 2001). To help clients work towards

posttraumatic growth a clinician can ask the client if they have perceived any positive

outcomes of the trial and how often they think of such benefits (Sears, Stanton, &

Danoff-Burg, 2003).

Session 1- Grief and Depression

24

Throughout the caregiving trajectory, the caregiver will clearly experience grief.

The emotion of grief does not necessarily have to be related to death, rather grief is often

experienced at several different points during caregiving. As the loved one of a cancer

patient grief is experienced when the initial diagnosis of cancer is given. While this grief

is experienced early on, a caregiver may become busy and distracted by the challenges of

cancer treatment so they may have never fully grieved the diagnosis of cancer.

Caregivers also face anticipatory grief which involves grieving anticipated losses

and changes. The tasks of anticipatory grief include accepting the potential of losses,

accepting the reality of the changed world around you, experiencing the pain of

anticipated grief and then later taking time off from anticipatory grieving (Rando, 2000).

Another related emotion caregivers work on is anticipatory coping. Anticipatory coping

is an effort to deal with an impending threat (Frydensberg, 2002)

In this initial session it will be critical for the group facilitator to define

anticipatory grief and anticipatory coping as well as describe an outline of the

anticipatory grief process. The group participants should then be given the chance to

discuss where they are in their own grieving process.

While some individuals participating will have lost their loved ones to cancer and

others will have a loved one who has survived cancer the group members will be able to

relate to the universal feelings of uncertainty and the struggle with anticipatory coping

that comes with the cancer diagnosis. Everyone will likely be at a different point in their

grieving process. Opening up a dialogue about grief will help the members of the group

to gain an understanding of the similarities between the members.

25

Part of posttraumatic growth is experiencing the pain of the trauma and not

suppressing the troubling feelings. While this initial session on grief will bring up

uncomfortable emotions for some caregivers, it is not necessarily beneficial to avoid

emotional pain according to the theory of post traumatic growth (Tedeschi & Calhoun,

1995). The group should consider the many grief reactions they have experienced such as

denial, shock, anger, guilt, fear, anxiety and sadness. At the end of the session group

members should be encouraged to write a journal entry describing the various losses they

have experienced and what the losses have meant to them. The purpose of this journal

writing activity is to begin the process of developing a narrative of their experience and

to allow the group members to focus on the many challenges of their experience.

Focusing on the challenges of the trauma will be the first step in developing a narrative

(Pals & McAdams, 2004). Realizing the challenges of their experience will help the

group members to focus on exactly how cancer has impacted their life. This is significant

because some caregivers may be using thought suppression as a method of coping with

cancer.

Overall, the goal of the first session is to become acquainted with the other

members of the group and develop an understanding of how caregiving has impacted

others. It is unlikely that the caregivers in the group will have had exposure to others who

have also been cancer caregivers. It is hoped that hearing the stories of others will make

group members reflective more about their experience. Also asking the group members to

tell about their story and grief process should aid in beginning to develop a narrative.

Session 2- Developing a Narrative

26

An individual challenged by trauma must work to develop a narrative of how the

event has changed their life (Tedeschi & Calhoun, 1996). Until trauma survivors

construct personal narratives to organize information about themselves positive change

may only be experienced as tentative (McAdams, 1993). As a caregiver develops a

narrative of their experience they may be able to see some of the valuable aspects of their

time as a caregiver. An important part of the meaning making experience is to

acknowledge that one can find benefits from the struggle with trauma or cancer yet still

never have wished for the events (Calhoun & Tedeschi, 1998). In this group session the

facilitator should mention that one can grow from dealing with trauma and still believe

they would give up the growth in return for never having to experience cancer. The group

facilitator should explain the importance of developing a story or narrative of the

caregiving experience. It should be explained to group members that developing a story

of their cancer experience is a key part of the after cancer coping process. Group

members should understand that developing a story of their experience is a process as one

reflects upon the experience and gains new insights with time.

To assist in the process of developing a narrative of their experience members of

the group will be asked to develop a timeline of their lives including a projection of what

the next few years will look like after cancer (Shields & Rousseau, 2004). On this

timeline the group members will be asked to plot significant life events. After completion

of the timeline the facilitator will ask if anyone has noticed ways they have experienced

personal or spiritual growth in response to cancer. The purpose of this exercise is to help

caregivers experience perspective and to develop a sense of meaning. The group

27

members can then share what they feel in response to looking at their experience from the

perspective of a continuum.

Since studies have shown the positive physical and psychological effects of

journal writing the group leader should encourage journal writing as means to continue

with the development of a narrative (Pennebaker & Seagal, 1999). The group leader

should discuss the recommendations for optimal journal writing. Neimeyer (1998) has

outlined the following recommendations:

“1. Focus on a loss that is among the more upsetting or traumatic experiences of your entire life. 2. Write about those aspects of the experience that you have discussed least adequately with others, perhaps aspects that you could never imagine discussing with anyone. 3. Write from the standpoint of your deepest thoughts and feelings, tacking back and forth between an explicit account of the event and your reactions to it. 4. Abandon a concern with grammar, spelling, penmanship, or typographic accuracy. 5. Write for at least 15 minutes per day for at least 4 days. 6. Schedule a transitional activity after the writing before resuming “life as usual.” (p. 73)

The group leader should then facilitate a discussion about the strengths or benefits

that group members have acquired from caregiving. An example of strength would be

discovering how much one is able to handle after they have been tested physically and

emotionally during caregiving. An example of the benefit might be appreciating life more

than before. The purpose of discussing such benefits and strengths is not to trivialize the

experience but to engage the participants in the sort of positive reflection they can use

later in journal writing.

While narrative development will be the primary topic for session two, this key

issue should be covered in additional sessions. The format of the group which allows for

ample dialogue will facilitate the continuing development of the participant’s individual

narrative. Overall, the development of a narrative or story of the experience needs to be

viewed by the participants as a process that is slow to achieve. The goal is to slowly

28

process the challenge, feeling the painful emotions while gradually introducing some

positive re-appraisal of the caregiving situation.

Session 3- Rebuilding Social Networks

The perception that one has emotional support available to them is correlated with

post traumatic growth (Park, Cohen, & Murch, 1996). Caregivers often become isolated

from their social support network as they become increasingly occupied by the demands

of caregiving. A group of reliable friends and family members is likely still available to

the caregiver but they are unsure of how exactly to approach the caregiver. Additionally,

after facing isolation the caregiver may be unsure of how to once again utilize the social

supports they may have neglected during the cancer treatment process.

A function of post-traumatic growth is positive change in interpersonal

relationship or an increased sense of closeness to others (Tedeschi & Calhoun, 1996). In

order to help caregivers work toward posttraumatic growth they must communicate both

their needs and their experience; in order to do this, caregivers will need a support system

to communicate different emotions. Part of developing a narrative is to communicate and

try new thoughts out on different people. Research shows that many avoid

communicating about cancer, especially after caregiving is over, a successful intervention

should target such avoidance (Shields & Rousseau, 2004). The idea behind the group

therapy session will be to create an environment where caregivers feel comfortable

talking about their cancer experience and even the fears that they would not feel

comfortable discussing outside of the group.

In order to achieve the goal of building social support the group session should

work on identifying sources of support. The facilitator of this group session needs to

29

begin with opening up a dialogue about the isolation that often occurs with caregiving.

Research has shown caregiving frequently disrupts the social life of the caregiver

(Flaskerud, Carter, & Lee, 2000). During this dialogue the group should identify ways

they have been able to gather social support. Such a discussion will give other group

members strategies for gathering and using support.

As a person adjusts to life without cancer they will experience a series of different

emotions or different struggles. Members of the group should work on identifying people

around them that can support them in such different areas. For example the group

members should identify a person they can count on when the feel lonely, a person that

will listen to the stories they want to share, a person they consider understanding and a

person who they feel gives good advice. For some people this might be one person, for

others they will depend more on a variety of people. After the group members identify

the people they can contact during their struggles, they will work to make a plan to

contact their identified support team in a manner they feel comfortable. To contact

various members of their support team they should let the person know how that they

consider them the person to talk to when they just want to vent for example. This is one

of the ways the caregiver can be proactive in developing their social network.

Session 4- Redefining Normal

There are four common aspects to the after caregiving adjustment period

including; emotional distress following the cessation of care, a feeling of loss over the

caregiver role, positive effects from no longer providing care, and the challenges of

moving on after care (Boerner, Schulz, & Horowitz, 2004). As a caregiver works to cope

30

and adjust to these four aspects they will be redefining what normal is for them after

cancer caregiving.

As caregiving comes to an end the caregiver will experience emotional distress.

Adjusting to the end of caregiving either means coping with the loss of a loved one or

coping with the uncertainty of the future once the disease is in remission. At the end of

caregiving often cancer caregivers are dealing with the residual grief from the initial

cancer diagnosis as they have not had the chance to grieve during caregiving (Cella &

Tross, 1986). In order to help group members work towards optimal adjustment the

therapy sessions should evaluate the losses that have not been mourned and the

anticipatory grief members are experiencing. The group facilitator should encourage

members to mourn the losses they have experienced and not continue to suppress feelings

of grief and loss. In order to do this the group should conduct a discussion about the

losses they have experienced.

Some of the caregivers in the group will feel a sense of relief that caregiving is

over. Others may feel saddened by the loss of the caregiving role which they considered

meaningful to them. Some group members will feel mixed emotions including both a

sense of relief that caregiving is over and miss the gratifying role of caregiver at the same

time. Overall, many caregivers do gain self esteem, attachment, responsibility, and pride

that associated with their role of caregiver (Wingate & Lackey, 1989). The group

facilitator should start a discussion allowing members to express how they feel about the

end to caregiving.

The importance of this discussion is to help the group participants normalize the

feelings they have. A correlate of posttraumatic growth is a new found sense of personal

31

strength as one overcomes trauma and realizes they are stronger than previously thought

(Tedeschi & Calhoun, 1996). This component of posttraumatic growth is especially

relevant to cancer caregivers as they were challenged by their trauma to take on a new

role. The group facilitator should additional ask members about ways they feel stronger

after caregiving.

When caregiving comes to an end the career is challenged to define what normal

will be for them. For caregivers there is likely two ways that normal has been changed for

them, they likely have increased feelings of both vulnerability and strength. An increased

sense of vulnerability is a common response to a traumatic event (Calhoun, & Tedeschi,

1998). Dealing with an illness such as cancer can make anyone feel vulnerable to the

possibility of their own death. Research has shown that caregivers realize their own

vulnerability to and use cancer as a wake up call after caregiving as they take steps to

improve their own heath maintenance (Bowman, Rose, & Deimling, 2005). While and

individual may come to terms with the discomfort of feeling venerable survivors or

trauma can gain a sense of strength as they realize their own ability to be self-reliant as

they cope with difficult challenges (Tedeschi & Calhoun, 1996).

An individual who experiences post-traumatic growth will have an increased

appreciation for life as well as new life directions and priorities (Calhoun, & Tedeschi,

1998). The group facilitator should ask the participations how and if their life direction or

priorities have changed after caregiving. While some caregivers may have only limited

changes the process of defining what normal is for them after caregiving is an important

question.

Limitations

32

One of the primary limitations of this proposed program is that it assumes a

healthy relationship between the cancer patent and caregiver. The research I have

reviewed does not attempt to help those suffering from complicated grief or complicated

emotional relationships. This program targets a limited population of informal caregivers

who have a largely positive relationship with their care recipient.

There is very limited and incomplete information about how a clinician can

influence posttraumatic growth (Tedeschi & Calhoun, 1996). The idea behind the

creation of the proposed sessions is not that a therapist can create posttraumatic growth

rather. The goal is provide clients with exposure to variables known to incite growth. In

the group therapy sessions it seems more likely that fellow caregivers would lead each

other to growth than the therapist leading the group towards growth.

There are limitations to the theory of posttraumatic growth. It is not yet

understood what the effects of posttraumatic are on long term psychological adjustment

(Calhoun & Tedeschi, 1998). Longitudinal research is needed to examine this

relationship.

Another limitation of this proposed intervention is the characteristically low

utilization rates for group based psychological interventions in medical settings (Coyne &

Racioppo, 2000). While this intervention would not necessarily take place in a medical

setting the difficulty reported by other studies in recruitment could indicate a difficulty in

executing this proposal (Kazak, 2001).

Summary and Future Directions

In summary, I have reviewed literature both on posttraumatic growth and the after

cancer caregiving experience to determine the needs of this population. The research has

33

indicated both that caregiving can be considered a traumatic event as defined by Calhoun

and Tedeschi (1996) and, that both cancer patients and those around them can experience

posttraumatic growth.

There is a lack of research evaluating the experience of cancer caregivers after

their caregiving role has ended. Before additional program developments could be made

using the theory of posttraumatic growth additional research needs to be conducted to

about the population of after cancer caregivers their experience and needs. The existing

research on the burdens of caregiving indicates a need for psychological interventions to

help this population adjust. Interventions for caregivers after cancer may be one of the

few times to reach this population as the demands of the caregiving role often preclude

participation in programs during cancer.

34

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