Cancer in The Family Review of The Psychosocial Perspectives of Patients and Family Members

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Journal of Family Social Work

ISSN: 1052-2158 (Print) 1540-4072 (Online) Journal homepage: www.tandfonline.com/journals/wfsw20

Cancer in the Family: Review of the Psychosocial


Perspectives of Patients and Family Members

Diane B.MitschkePh.D. MSW

To cite this article: Diane B.MitschkePh.D. MSW (2008) Cancer in the Family: Review of the
Psychosocial Perspectives of Patients and Family Members, Journal of Family Social Work, 11:2,
166-184, DOI: 10.1080/10522150802175159

To link to this article: https://doi.org/10.1080/10522150802175159

Published online: 11 Oct 2008.

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Cancer in the Family: Review of the
Psychosocial Perspectives of Patients
and Family Members
Diane B. Mitschke, Ph.D., MSW

ABSTRACT. As advances in cancer care have led to more treatment


options and longer survival for cancer patients, a focus on quality of
life for patients and their families has gained importance. This review
provides a discussion of stress and coping theory, documents the rel-
evance of this topic area for social work practice, and illuminates
the results of a literature review by emphasizing the perspective from
which research was collected within the family system. Recognizing
the impact of cancer on the lives of patients, their partners, children,
and the family as a whole is an essential factor in providing appropri-
ate and adequate psychosocial services to families facing cancer.

KEYWORDS. Cancer, caregiver, coping, family, psychosocial, stress

Cancer is the second leading cause of death in the United States and
results in the diagnosis of approximately one and one-third million
new cases each year (American Cancer Society, 2005). A shift in

Diane B. Mitschke is Assistant Professor, School of Social Work, Univer-


sity of Texas at Arlington, Arlington, TX.
Address correspondence to: Diane B. Mitschke, Ph. D., School of Social
Work, University of Texas at Arlington, 211 S. Cooper St., Box 19129,
Arlington, TX 76019.

Journal of Family Social Work, Vol. 11(2) 2008


Available online at http://jfsw.haworthpress.com
# 2008 by The Haworth Press. All rights reserved.
166 doi: 10.1080/10522150802175159
Diane B. Mitschke 167

cancer care has occurred over the course of the past few decades as more
people are surviving the initial diagnosis of cancer. As medical advances
have increased, the relative five-year survival rate for a person diagnosed
with cancer is 62% (American Cancer Society, 2005). As more people
are surviving cancer, the focus in social work practice and research
has shifted from viewing cancer as a terminal illness and helping families
to deal with bereavement and loss, to framing a cancer diagnosis as a
chronic illness in which families learn to cope and alter functioning to
accommodate survival (Veach, Nicholas, & Barton, 2002).

BACKGROUND
The American Cancer Society estimates that three out of four fam-
ilies will be affected by cancer at some point during the course of a
lifetime (Veach, Nicholas, & Barton, 2002). Families are an integral
part of a patient’s experience in dealing with illness and treatment,
and just as the family has a significant role in providing support
for the patient, the entire family unit is affected physically, emotion-
ally, socially, and psychologically when a family member has cancer.
Some quality of life research has been conducted on the effects of
cancer on the family, particularly looking at families in which a child
has been diagnosed and treated for cancer (e.g. Elkin, 2007; Brody,
2007; Aldridge, 2007). However, less research exists on the family’s
ability to cope when a parent has cancer in middle adulthood. Almost
no data is apparent on cultural differences in family coping with can-
cer. Research suggests that cancer affects the mental health and
psychological well-being of cancer patients and their children and
spouses (Weihs & Reiss, 1996). Not only does cancer have an effect
on the family, but the family’s reaction to cancer and ability to func-
tion in a healthy and supportive manner has an effect on the course of
the illness as well (Schulz, Schulz, Schulz, & von Kerekjarto, 1996).

Relevance to Social Work Practice and Rationale for the Review


Foundations of social work lie in both the mental and physical
health of individuals, families, and communities. As generalist practi-
tioners, social workers view society from systems and ecological per-
spectives, emphasizing the importance of relationships among family
members and the value of social supports as being central to the
168 JOURNAL OF FAMILY SOCIAL WORK

functioning of the individual. Further, social work embraces the sys-


tems theory concepts of family social functioning and the influence of
the environment and relationships on the mental and physical health
of the individual. Social work theories delineating health and family
functioning are vital to the exploration and promotion of psycho-
social oncology and its incorporation into social work practice.
As experts in psychosocial assessment and family functioning, social
workers often work with families facing cancer diagnosis, treatment,
and supportive care. By incorporating the systems perspective within
assessment of physical and mental health needs, social workers are
in a unique position to address not only the multidimensional concerns
of patients, but also to assess and assist with the needs of families affec-
ted by cancer. Social workers are capable of addressing the needs and
concerns of clients across the life span, as much of formal social work
education focuses on learning about specific needs of people in varying
life stages. In working with families faced with cancer, social workers
are able to address the needs not only of adult cancer patients, but also
the coping abilities of young children, adolescents, adult spouses, and
even older parents. Social workers are also uniquely equipped to view
the family as a social support unit for the patient and to speak to the
ability of the family to continue functioning in a healthy way despite
the addition of cancer as a significant stressor.

Stress, Coping, and Family Interaction


Research exploring the effects of cancer on the family can be cate-
gorized into three broad areas: stress modeling stemming from nega-
tive life events, coping theories and models primarily focused on
differences in coping styles and processes, and family interaction
models. While most of the literature in these areas did not originate
in research examining cancer’s effects on the family specifically, much
of the literature in stress, coping, and family functioning or interac-
tion is directly applicable to this field of study, and has hence been
utilized by researchers in the development of theory and models
specific to cancer’s effects on families.

Stress and Coping


Coping literature was preceded by stress research, which examined
the varied stressful encounters experienced by individuals and the
eventual effects of the stress of these encounters on the health and
Diane B. Mitschke 169

well-being of the individual. Much of the initial research in this area


was based on delineating life-events and examining stress and coping
as a result of the number of life-events experienced within a given
time period (Vinokur & Selzer, 1975; Thoits, 1981). Of the numerous
models integrating stress and its consequences, most have in common
three mediating factors: social supports, psychosocial resources, and
coping resources (Avison & Gotlib, 1994). Of the stress process
model, Avison and Gotlib (1994) acknowledged, ‘‘Though its major
applications have been to the study of psychological distress and
depressive symptomology, it has also been applied successfully in
the exploration of factors associated with symptoms of physical
illness’’ (p. 6). Sales, Schulz, and Biegel (1992) conducted a review
focusing on predictors of strain in families of cancer patients and
found that a number of objective stressors, such as stage of diagnosis
and prognosis, caregiving demands, illness duration, cancer site, and
level of patient distress were factors that had been explored in
predicting strain in families. Further, some of these concepts were
applied in a study focusing on the stress process to explore strain
and depression among caregivers of cancer chemotherapy patients
(Schumacher, Dodd, & Paul, 1993). Researchers found that coping
mediated the relationship between strain and depression, while social
support mediated the relationship between functional status and
depression. The findings suggest the importance of maximizing cop-
ing and social support in order to promote family caregiver mental
health (Schumacher et al., 1993). In a study comparing psychosocial
resource models of mediation versus buffering, Clair, Fitzpatrick,
and La Gory (1995) determined that caregiver burden and depression
could be explored as a function of the relationship between chronic
and acute stressors, and that caregivers’ experiences of burden and
depression are significant consequences of the caregiving experience.
Sales et al. (1992) emphasize that objective variables such as stage of
diagnosis and caregiver distress are only parts of a larger whole, and
that family relational factors such as marriage quality and communi-
cation, the stage of the family’s development, and perceived social
support should also be considered in evaluating stress and strain in
families experiencing cancer.
In moving away from the effects of stress process and toward a
model of coping process, Lazarus (1993, 2000) contends that coping
is capable of mediating the emotional outcome of a stressful encoun-
ter. In addition, coping varies according to the stressful conditions
170 JOURNAL OF FAMILY SOCIAL WORK

encountered. When stressful conditions are viewed as unalterable,


emotion-focused coping strategies are most beneficial; however, when
they are appraised as controllable by action, problem-focused coping
is most common (Lazarus, 1993). Folkman and Lazarus (1988) also
emphasize the relationship between emotion and coping as mutually
reciprocal, and contend that coping is a multidimensional process. In
fact, much research has been conducted focusing on the abilities of
individuals to cope with ordinary life strains that result in emotional
stress (Pearlin & Schooler, 1978). Pearlin and Schooler (1978, p. 3)
define coping as ‘‘any response to external life strains that serves to
prevent, avoid, or control emotional distress.’’ In addition to studies
investigating coping processes and social support in individuals deal-
ing with daily hassles and general life strain, research involving
specific subgroups of populations has been conducted to determine
the effects of specific life events on effected individuals’ ability to
function and cope (e.g. Sexual assault victims, see Ruch, Gartrell,
Amedeo, & Coyne, 1991). From this more specific focus on popu-
lation subgroups experiencing a specific, usually traumatic, life event
stems the social support and coping research in the field of cancer.

Family Interaction and Adaptation Research


A number of models exploring family adjustment, coping, function-
ing, and adaptation are applicable to the experiences of families facing
cancer. For example, the family stress model, Typology Model of
Adjustment and Adaptation (McCubbin, 1989), is a model that ‘‘depicts
the variables of family stressors and demands, family types based on
inherent strengths within the family system, family resources, family
appraisal, and adaptive coping as critical factors influencing the family’s
adaptation over time to both normative and situational stressor events’’
(p. 102). Related family survivorship studies, incorporating key con-
cepts from models such as the Resiliency Model of Family Stress,
Adjustment, and Adaptation, an adaptation of the earlier Typology
model, have played a key role in establishing and understanding key
theoretical aspects of coping in families, though many of these related
models have their roots in explorations of childhood illness and its
effects on families (McCubbin, McCubbin, Thompson, & Thompson,
1999; Mellon & Northouse, 2001; Mellon, 2002). The Resiliency Model
emphasizes adjustment and adaptation within the context of the culture
and ethnicity of families, and recognizes these as factors that influence
Diane B. Mitschke 171

the way that families adapt and adjust to stressful situations (McCubbin
et al., 1999).
Other studies specific to cancer and families have also incorporated
the circumplex model of family functioning (Bloom, 1996), which
focuses primarily on the interrelationship between family adaptability
and cohesion. In addition, general systems theory, and, more specifi-
cally, family systems models focusing on characteristics of healthy
family systems, have also played an integral role in facilitating
research on cancer in families (Murtonen, Kuisma, Paunonen, Lehti,
Koivula, & White, 1998; Weihs & Reiss, 1996). Emphasis on the fam-
ily as a system also involves attention to relational processes of family
interaction and a focus on attachment relationships between family
members experiencing the effects of cancer (Weihs & Reiss, 1996).
Finally, life cycle models that focus on the movement of a family
through life stages and the impact of cancer at various stages of
the family’s development have influenced research in this area by
recognizing differences in family structure, size, and coping patterns
according to stage of family development (Veach, Nicholas, &
Barton, 2002; Weihs & Reiss, 1996).

METHODS
To identify studies for the review, computerized database searches
of MEDLINE (1950–2004), CINAHL (1950–2004), Social Work
Abstracts (1977–2004), PsychINFO (1950–2004), and CANCERLIT
(1975–2004) were conducted. Keywords included coping, functioning,
family, caregiver, cancer, and psychosocial impact, utilizing a snowball
sampling approach to locate articles relevant to the research questions.
Limits to the searches included only articles published in the English
language, and exclusion of articles that focused solely on the patient’s
perspective and did not include reference to cancer’s effects on the fam-
ily. A total of 48 studies and review articles were included in this review
based on their relevance to the topic area and their contributions to the
existing body of research on families and cancer. The articles were then
typed into a matrix, or table, and dissected using the following
categories: (a) Purpose, (b) Research Question(s), (c) Scales=Measures
asures Utilized, (d) Method and Effect Size, and (e) Key Findings.
Each of the included articles specifically addressed both criteria: (a)
Focus on psychological aspects of coping with cancer, and (b) Focus
172 JOURNAL OF FAMILY SOCIAL WORK

on the experiences and perspectives of patients and their family mem-


bers. Of the 48 articles included, 37 described research studies, while
the remaining 11 articles were theoretical. Nine of the articles included
in this review were published in predominately social work journals,
with the majority of studies emerging from the fields of nursing and
psychology. This points to the need for additional awareness in the
field of social work to involve itself in research involving the psychoso-
cial impact of cancer on families.

RESULTS

Perspectives in Psychosocial Cancer Research


The vast majority of research looking at coping with cancer focus
solely on the cancer patient’s individual coping process, which may,
by default, include experiences that relate to family members and sup-
portive others. The bulk of these studies, however, were conducted
from the perspective of the patient, rather than the perspectives of
family members. Because this review focused primarily on implica-
tions for family members of cancer patients, only review articles are
presented in exploring the patient’s perspective related to the cancer
experience. Studies focusing on the individual cancer patient also
have included various aspects of psychosocial adjustment, including
perceptions of available social support and the development of social
networks, effects on other family members including spouses and
partners, and to a lesser extent, children, and various other aspects
related to psychosocial well-being, all from the patient’s perspective.
It should be noted that the vast majority of the research that involves
coping with cancer has been conducted using female breast cancer as
the primary diagnosed cancer site.
Coping With Cancer: The Patient’s Perspective
In a literature review exploring the psychosocial experiences of
cancer survivors, a number of studies determined the most salient
issues for cancer survivors included fear of cancer recurrence and
death, alterations in customary social support including family func-
tioning, marital stress and intimacy issues, and isolationism, among
others (Welch-McCaffrey, Hoffman, Leigh, Loescher, & Meyskens,
1989). A review article exploring the relationship between age and
Diane B. Mitschke 173

the psychosocial conditions of cancer patients yielded the conclusions


that except in functional status measures, older persons with cancer
manifested fewer and less severe psychological problems (Mor, Allen,
& Mallin, 1994). Mor et al. (1994) contend that older patients have
fewer competing demands on their time and resources than do
younger patients, which may mitigate the negative impact of psycho-
social consequences.
In a large (n ¼ 661) and seminal study exploring the relationship
between family support and the psychological well-being of breast
cancer patients, coping style was found to be the major predictor of
physical social, and psychological well-being of the cancer patient,
followed by family interaction (Bloom, 1996). This study emphasized
the importance of separating the type of social support from the source
of social support. Howes, Hoke, Winterbottom, and Delafield (1994)
interviewed nineteen women undergoing treatment for breast cancer to
determine the relationship between the mother’s level of distress and
her child’s functioning and adjustment. This study found that the chil-
dren in the study were able to maintain normal functioning despite the
emotional distress of their mothers. Because the Howes, et al. (1994)
study was conducted from the perspective of the mother and the
mother’s perception of her child’s functioning and adaptation, the cor-
relation between the emotional and behavior problems of children and
the mother’s emotional distress level is understandable. However,
other studies that incorporate the perspective of children of cancer
patients have indicated a similar pattern may indeed exist [see Child’s
Perspective].
In exploring survivorship and cancer’s long-term, lasting effects on
families, Welch-McCaffrey et al. (1989) illuminated findings of sev-
eral studies related to alterations in customary social support in a
review of the literature on survivorship. The authors note that cancer
survivors experience ongoing psychological stress within the family as
a result of the cancer experience, and may have difficulty readjusting
and returning the normalcy after the illness experience. Clearly, the
vast amount of research conducted from the cancer patient’s perspec-
tive has demonstrated that social support and family relationships are
deeply affected by, and in turn, deeply affect, the coping experiences
of cancer patients and survivors. Studies conducted from the perspec-
tives of other family members elucidate the importance of social
support and family relationships also provide support for this
conclusion.
174 JOURNAL OF FAMILY SOCIAL WORK

Coping With Cancer in a Partner: The Couple’s Perspective


Research involving the dyad relationship between the patient and
his or her partner has been increasing in recent years, with studies
examining the significance of the partner relationship gaining in
importance. A comprehensive literature review investigating cancer
in the marital context explored the experiences of couples dealing
with cancer, and noted that many of the studies conducted were
descriptive in nature, and indicated consistent themes related to fear
of cancer recurrence and worries about the patients level of function-
ing and role responsibilities (Manne, 1998). Manne also delineates a
number of quantitative studies, about half of which are longitudinally
designed, and concludes that though most couples are able to adjust
to a cancer diagnosis and avoid significant psychological distress, a
subgroup of patients and partners do experience more difficulty in
adjusting to cancer and may have long-term consequences resulting
from the cancer experience. Manne’s (1998) comprehensive review
indicates studies exploring not only cancer’s impact on the partner
and the patient, but also cancer’s impact on the marital relationship,
as well as social support within the context of marriage.
Studies examining the quality of life of caregivers and experiences
of caregivers also explore the cancer experience from the perspective
of the partner or caregiver, in many cases who is one and the same.
Many of these studies exploring the experiences of partners have
also explored the experiences of patients and compared the two
(BrintzenhofeSzoc, Smith, & Zabora, 1999; Germino, Fife, & Funk,
1995; Zunkel, 2002; Germino & Funk, 1993). For example, in two
studies to examine the meaning and significance of cancer for the
partner relationship, Germino et al. (1995) found that both patients
and their partners searched for meaning in cancer that would reduce
its impact, and also that a determination of meaning was significant
for the couple as it relates to adjustment to the cancer experience. In
the qualitative portion of Germino et al.’s (1995) study (n ¼ 100
patients and partners), researchers found that the couple was most
likely to have discussed their psychosocial concerns related to cancer
with each other, and least likely to have discussed their concerns with
friends or extended families, providing validation for the importance
of the partner relationship in coping with cancer. Welch-McCaffrey,
et al.’s (1989) review article also cites several studies lending support
to the importance of the partner relationship, indicating that cancer
Diane B. Mitschke 175

patients and survivors without significant partners relate a greater


sense of isolation, more fears of cancer recurrence, and higher levels
of psychological distress.
Much research supports the notion that partners of cancer
patients experience high levels of distress; in fact, the results of sev-
eral studies indicate that spouses of cancer patients are as distressed
as the patients themselves. In a study comparing three groups of
couples experiencing cancer (n ¼ 60), one group in which both
members of the couple were ill, and the other groups in which
the female or male partner was ill, respectively, no significant differ-
ences were found in the distress levels of the couples studied,
thereby lending further support to the notion that partners are as
distressed as patients themselves (Baider, Walach, Perry, & Kaplan
De-Nour, 1998).
Several qualitative studies have explored the implications of com-
munication differences according to gender, and frustrations occur-
ring between couples because of different ways of handling conflict
resulting from a cancer diagnosis (Maughan, Heyman, & Matthews,
2002; Zunkel, 2002). Zunkel (2002) investigated the relational pro-
cesses that develop between partners during the woman’s recovery
from early stage breast cancer (n ¼ 87). Two distinct processes, an
acknowledging process, in which sharing and helping through
emotion- and problem-focused coping dominated the relationship,
and a minimizing process, in which the impact of cancer was moder-
ated and minimized. Of the two relational processes identified in this
study, the acknowledging process was found to be more beneficial for
the women in the study who were recovering from cancer.
A significant study evaluating the quality of life of primary care-
givers of cancer patients in hospice care (n ¼ 118) found that the
quality of life, measured by physical, social, emotional, and financial
well-being, of primary caregivers of cancer patients in hospice care is
negatively impacted by caregiving responsibilities, but psychosocial
support provided by hospice may help to lesson these negative effects
(McMillan, 1996). The review by Mor et al. (1994) also explored age
effects in the psychosocial impact of cancer on caregivers, finding
significantly more younger caregivers (< 65 years old) than older
caregivers (> 65 years old) reported financial difficulties as a result
of the caregiving experience. Furthermore, Mor et al. (1994) found
that younger caregivers were more likely than older caregivers to
report a significant disruption in daily routines.
176 JOURNAL OF FAMILY SOCIAL WORK

Soothill, Morris, Harman, Francis, Thomas, and McIllmurray


(2001) investigated needs of informal caregivers (n ¼ 32) and found
that patients and carers had many of the same concerns, though a
greater number of concerns are reported by caregivers. In the Soothill
et al. (2001) study, caregivers with unmet psychosocial needs were
more likely to not be the partner or spouse of the cancer patient, have
other caregiving responsibilities, and were less likely to have other sig-
nificant social relationships which could provide caregiving assistance.
In developing a research agenda to examine family support for
patients with advanced cancer, Given, Given, and Kozachick
(2001) illuminate the multilevel needs of caregivers of cancer patients,
which encompass not only mental and emotional health demands
such as depression, burden, and anxiety among others, but also
physical health demands such as fatigue, poor nutrition, and others,
that plague long-term caregivers of cancer patients. Lev and Owen
(1996; n ¼ 83 dyads) explored the relationship between cancer
patients’ self efficacy and family caregivers’ depression and perceived
burden and found that self efficacy acts as a mediator between stres-
sors related to caregiving and caregiving outcomes. Further, findings
suggest that cancer patients who believe they can enjoy life tend to
have caregivers who are healthier and more socially active (Lev &
Owen, 1996). Related to the concept of patient self efficacy are the
findings from a Schumacher et al. (1993) study exploring the stress
process in caregivers. This study found that caregivers (n ¼ 75) of
patients with higher functional status were more likely to report
higher levels of social support. Further, the results of the study
illuminate the relationship between caregiver strain and depression,
the latter of which may be lessoned or prevented if social support
and coping is maximized.

Coping With Cancer in a Parent: The Child


and Adolescent’s Perspective
In terms of coping with cancer research focused on family’s experi-
ence, a significant amount of work has been conducted in exploring
the coping of families in which a child has been diagnosed with
cancer. Less is known about the experiences of family members when
a parent is diagnosed with cancer, though a few studies have looked
at the experiences of children and adolescents whose parents have
cancer. Issues regarding communication patterns related to the
Diane B. Mitschke 177

diagnosis and treatment of a mother’s breast cancer, anxiety about


changes in roles and responsibilities, fear about the recurrence of dis-
ease, and fear about the potential loss of the mother-daughter relation-
ship were discussed in a social worker initiated study using qualitative
interviews with adolescent girls (Spira & Kenemore, 2000). A descrip-
tive study (n ¼ 16 children) exploring the worries of school children
when a mother has breast cancer indicated similar findings, as children
attempted to find meaning in their mother’s cancer diagnosis and
expressed fears about her health, the family’s abilities to cope with the
mother’s cancer, and worries about the future (Zahlis, 2001).
Lewis and Hammond (1996) conducted a landmark study exploring
family functioning following a breast cancer diagnosis from the per-
spective of the father (n ¼ 70), mother (n ¼ 70), and adolescent daugh-
ter or son (n ¼ 70). Results of the study indicated that the demands
of breast cancer as seen by the mother and father predicted higher
depression in mothers who were patients, decreased marital adjust-
ment, and decreased ability to parent adolescent children, which
further correlated with decreased adolescent self-esteem. In a study
exploring adjustment in 80 school-age children of parents with cancer,
poorer adjustment was found in children whose parent was also having
difficulty adjusting to the cancer diagnosis (Nelson & While, 2002).
This relationship between the parent’s and the child’s adjustment lends
further support to the importance of viewing cancer from multiple
perspectives, rather than solely from the perspective of the patient.
Cancer’s effect on the parents, which may result in depressive
affect and distress, has implications for children and adolescents
because of the parents’ reduced ability to parent effectively. Addition-
ally, tension and marital discord resulting from a cancer diagnosis
may also result in difficulties in adjusting to the diagnosis of cancer
in a parent for children and adolescents (Faulkner & Davey, 2002).
In their review article, Faulkner and Davey (2002) indicate that dif-
ferences in the age and gender of the child may alter the expected
adjustment to cancer in a parent, with older children and adolescents
being more likely to have difficulties due to alterations in roles and
responsibilities, and younger children expressing more emotional
responses such as fear and loneliness as a result of the parent’s cancer
diagnosis. Gender of the adolescent may also be significant in terms
of adjustment, with daughters experiencing greater difficulty coping
that sons of breast cancer patients (Lichtman, Taylor, Wood,
Bluming, Dosik, & Leibowitz, 1985).
178 JOURNAL OF FAMILY SOCIAL WORK

In a pilot study with parents and children (n ¼ 14 families) involv-


ing interviews and standardized questionnaires, children had more
behavior problems at the most acute stage of a parent’s illness, pro-
viding support for the notion that adjustment in children is affected
by stage and prognosis of cancer in the parent. Additionally, results
showed that families with poor family functioning, as defined by
chaotic adaptation tendencies and disengaged, less cohesive families,
had children who were more at risk for emotional and behavioral
problems (Huizinga, van der Graaf, Visser, Dijkstra, & Hoekstra-
Weebers, 2003).

The Family’s Perspective


Perhaps most important in families facing cancer is the ability of
the family to function in a manner that serves the health and well-
being of the family as a whole. In a notable study involving 192 sub-
jects, impairment to family functioning was not found in families with
cancer, though experiences of family members were varied according
to gender, age, and family size (Murtonen et al., 1998). For example,
more rigidity and enmeshment was reported by older relatives and
patients, males, and relatives of two-member families, while more role
conflict was reported by younger relatives and females. Inseparably
related to family functioning are examinations of family structure
and family interaction patterns.
Jansen, Halliburton, Dibble, and Dodd (1993) found that physical
cancer-related status was the most significant problem for families in
a study exploring problems experienced by family members of cancer
chemotherapy patients (n ¼ 100 patient, n ¼ 126 family members).
This study also found that time was a mediator for the total number
of problems reported by families, as the total number of problems
identified by families was significantly lower six months into chemo-
therapy treatment than at the onset of treatment. Additionally, the
results of the study indicate the importance of recognizing unrelated
family stressors as influencing family functioning, as families with
cancer experience stressors of secondary concern throughout the
cancer experience (Jansen et al., 1993).
Assessment of families experiencing cancer involves more than
structure and interaction patterns, however. For example, Lowder-
milk and Germino (2000) contend that elements such as the pattern
of authority, level of family development, family values, additional
Diane B. Mitschke 179

stressors, and outside support systems, among other elements, should


be of primary concern in examining the effects of cancer on families.
In addition, the phase of cancer is an important element to consider
in research of families experiencing cancer, as adjustment and psy-
chosocial impacts alter through phases such as diagnosis, treatment,
and rehabilitation, among others (Sales, 1991).
In a large study of cancer patients and their close relatives conduc-
ted in Norway (n ¼ 536 patients, n ¼ 473 relatives), patients reported
significantly more support and information regarding cancer, and
were more likely to be satisfied with the support they received, than
were their family members (Isaksen, Thuen, & Hanestad, 2003). Like-
wise, Mellon (2002) found that cancer patients’ families were more
likely to view support in terms of providing support to the patient,
rather than receiving support themselves (n ¼ 123 patients; n ¼ 246
family members).
In examining the longer-term effects of cancer on family survivor-
ship, Mellon and Northouse (2001) found that in a random sample of
123 families interviewed between one and five years following cancer
treatment, an examination of concurrent family stressors was of
particular significance. Additionally, more support was provided
for the notion that the patient’s assessment of meaning and psycho-
social adjustment had implications for the family’s conceptualization
of meaning. Furthermore, family members’ fear of recurrence was
correlated with the family’s overall quality of life following cancer
treatment (Mellon & Northous, 2001). Meaning of the cancer for
the patient and family members may have positive connotations as
well, for example, in terms of placing increased value on family rela-
tionships and an increased commitment to one’s personal health
(Mellon, 2002).

IMPLICATIONS
Viewing research in terms of the perspective from which it is con-
ducted is a plausible first step in illuminating gaps that may exist in
the literature. For the most part, more attention has been paid to
the patient’s experience with cancer, with more limited attention
focused on the partners’ and children’s perspectives, respectively.
Furthermore, most of the research conducted has involved breast
cancer patients. More efforts need to be made to examine the impact
180 JOURNAL OF FAMILY SOCIAL WORK

of cancer on the family when fathers=husbands are diagnosed with


cancer. Further, it is clear that the family’s ability to cope with illness
varies across cultures. Issues such as attitudes about the origins of
disease, expression of pain, and preferred coping style are essential
in examining quality of life and effects of cancer on families of vary-
ing cultural and ethnic backgrounds (Gotay, 1996; Jens, Chaney, &
Brodie, 2001). The burden of cancer is disproportionately carried
by minorities and those of low socioeconomic status. While all
segments of society experience cancer, these populations have higher
rates of mortality from cancer. Understanding differences in family
structure, interaction patterns, attitudes toward cancer, and
coping styles are essential in researching the effects of cancer on fam-
ilies of minority status, particularly families of varying ethnicities
and cultures.
In addition, the vast majority of the research conducted with fam-
ilies of cancer patients thus far has neglected, in large part, the experi-
ences of families of low socioeconomic status with reduced access to
health care, as well as families that do not fit within a traditional con-
ceptualization of a nuclear family. For example, the needs of single
parent families, gay and lesbian families, grandparent-headed famil-
ies, and numerous others must be assessed and addressed. Many of
the studies reviewed indicated that the majority of families did not
experience significant difficulty in adjusting to cancer; however, a
subset of families experience long-term problems. It is with this subset
of families that additional research concerning contributing factors to
their maladjustment should be conducted, so as to lead to the devel-
opment of tailored interventions designed to address the needs of
these families.
While many of the studies included in this review provide interest-
ing and intriguing findings regarding the experiences of families
facing cancer, the majority of these studies are unable to yield broad
conclusions and implications for practice due to limited scope and
small sample sizes. Research in this area has been relatively slow to
emerge due to difficulty in capturing the perspectives of patients’ chil-
dren, logistical difficulty in arranging qualitative and quantitative
data collection with families, and differences in parental concern
for their children’s awareness of a parent’s cancer, among other con-
cerns. That said, it becomes increasingly more important that social
work practitioners and researchers become involved in conducting
research and practice interventions that seek to further explore and
Diane B. Mitschke 181

meet the needs of the many kinds of families that face cancer. By
learning about and collaborating with cancer support organizations
such as the American Cancer Society, the National Cancer Institute,
CancerCare, and others, social workers in oncology can become a
part of a larger movement to address the unmet needs of families
facing cancer.

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