State of the Science

The Effects of Cancer Survivorship

on Families and Caregivers
More research is needed on long-term survivors.
By Frances Marcus Lewis, PhD, RN, FAAN
ancer affects not just those who have the
disease but also their caregivers and
families. Very few studies have examined the effects of long-term cancer survivorship on the family. Most studies
that have addressed this topic have focused on
breast cancer survivors and are limited to three
years after diagnosis. This article will examine the
strengths and limitations of the current literature on
families and cancer survivorship and suggest directions for future research that is needed in this field.
Family is defined broadly, to include biological or
blended families and opposite- and same-sex partnerships with or without children. Studies of children diagnosed with cancer are excluded because
this topic constitutes a separate body of literature
and deserves its own analysis.

STUDIES ON FAMILIES WITH CANCER

Four generations of studies have focused on cancer
and its effects on families and caregivers. The first
generation of studies appeared as clinical papers
and included recommendations on how to minimize
disruption to the patient and spouse. However,
these studies lacked data and were based on clinical
impressions. The second generation of studies
emerged in the 1970s and 1980s and primarily
Frances Marcus Lewis is professor of family and child nursing and the
Elizabeth Sterling Soule Professor of Nursing and Health Promotion at
the University of Washington in Seattle. Contact author: fmlewis@
u.washington.edu. Research reported in this article was sponsored by
grants from the National Institutes of Health (National Center for
Nursing Research RO1-NR-01000; Division of Nursing RO1-NU01000; National Institute of Nursing Research RO1-NR-01435; and
the National Cancer Institute RO1-CA-55347); the American Cancer
Society; the intramural research program at the University of
Washington; Susan G. Komen Breast Cancer Foundation, Puget Sound
Chapter; the Oncology Nursing Foundation; and the Dorothy S.
OBrien Special Projects Fund, Cancer Lifeline. The author of this article has no significant ties, financial or otherwise, to any company that
might have an interest in the publication of this educational activity.

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AJN t March 2006 t Vol. 106, No. 3 Supplement

included cross-sectional, descriptive designs focusing mainly on the spouse or caregiver. The third
generation of studies used complex statistical
analyses to examine the processes by which family
members were affected by cancer in the survivor.
Such analyses enabled us to understand how the
cancer invaded other family members behavior,
how family members managed the illness, successfully or not, and why children were negatively
affected. The fourth generation of studies has
evolved quite recently and includes rigorous intervention studies for caregivers or family members.
However, most of what we know about families,
what affects them, and how well they do or do not
manage the cancer is limited to short-term survivors and their families, not long-term survivors.
Also, populations studied are primarily those
affected by breast cancer.
There are four reasons based on data (as
opposed to reasons based on speculation or clinical
practice) to consider family-focused research in
cancer survivorship:
1. Family members are substantially distressed
when a member has cancer.
2. Family members do not know, understand, or
respond supportively to the expressed thoughts,
feelings, and behavior of other family members
about the cancer.
3. Families try to cope with both the impact of the
cancer and with tension in the family caused or
accentuated by the cancer.
4. Family members struggle to maintain their core
functions when one of them is a long-term
survivor.
Family members are substantially distressed
when a member has cancer. Even high-functioning
families struggle and suffer when a member has cancer.1 Both cross-sectional and longitudinal studies
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Nursing & Cancer Survivorship

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have demonstrated emotional distress and behavioral disruption in spouses of women with breast
cancer. Significantly elevated levels of distress in
spouses have been documented up to three years
after diagnosis; according to some studies, distress in
the spouse exceeds that in the diagnosed patient.2-10
Most of our knowledge of childrens experiences of a parent who has cancer is limited to two
years after diagnosis.11 This distress relates
directly to the childs illness-related concerns, as
well as to the real and symbolic threats to the
childs sense of security.12-14 In a recent study of
school-age children, 81% of children whose
mothers had early-stage breast cancer feared that
she was going to die from the disease.15
There is substantial evidence showing that the
quality of parenting is affected when a parent
has cancer.16-18 Most evidence for this claim
comes from studies of children whose parent has
breast cancer.17-19
Children of mothers with cancer sometimes think
of themselves in negative terms compared with children of parents who are not ill. In a seminal study
looking both at children whose mothers had breast
cancer or diabetes and at children whose mothers
were healthy, children of mothers with either cancer
or diabetes tended to have lower self-esteem than
did children of healthy mothers.11
Family members do not know, understand, or
respond supportively to the expressed thoughts,
feelings, and behavior of other family members
about the cancer. Multiple studies provide evidence
that family members do not know, do not understand, do not focus on, and report not having the
skills or confidence to support other family members reacting to cancer in the family. This has been
extensively documented in child-rearing families
affected by breast cancer,15-17, 20 as well as in recent
studies involving the spousepatient dyad.21-23 Even
when parents with cancer see that the disease distresses a child, parents say they do not know what
to say or do. They report feeling excessively consumed by their own feelings of tiredness or sickness
and by the struggle with their own illness experience.17 Approximately 25% of younger children and
15% of adolescents whose mothers had cancer
reported that no one, not even family members,
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helped them cope with the impact of the diagnosis.20

No studies have looked at these factors beyond the
acute phase.
Couples experiencing the acute phase of breast
cancer treatment are known to function in survival
mode, during which time competing demands distract them from attending to each others needs,
thoughts, and feelings, as well as to specific needs for
support about the cancer. Very little is known about
the couples interactions in long-term survivorship.
We speculate two extremes: either benefit-finding
behavior (identifying positive aspects in the cancer
experience), or heightened interpersonal tension in
the couples relationship. But scientists do not know
what predicts a couples ability to see the positive in
long-term survivorship or what predicts heightened
tension in the relationship. To date there has been no
research in this area with long-term survivors.

Scientists do not know what predicts a

couples ability to see the positive in long-term
survivorship or what predicts heightened
tension in the relationship.

Families try to cope with both the impact of the

cancer and the tension in the family caused or accentuated by the cancer. Coping is a popular concept
in nursing and behavioral medicine.24 Although the
concept has salience in studies of an individuals
adaptation to delimited stressors, its validity in
depicting a familys response to long-term survivorship is less clear.25, 26 In two studies of families
affected by maternal breast cancer, illness-related
demands reported by both the patient and
spousecaregiver never significantly predicted family
member coping behavior.27, 28 In another study
involving 111 families of women with breast cancer,
data obtained at three different occasions at fourmonth intervals revealed that family members did
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State of the Science

Racial and Ethnic Disparities

in Cancer Care and Survivorship
A research and education effort focuses on African American
breast cancer survivors.
By Patricia K. Bradley, PhD, RN
thnic and racial minority populations
tend to present for treatment at later
E
stages of cancer and have higher mortality
rates from cancer.1 Disparities also exist in
the treatment of these populations.2 Multiple
institutional and systemic barriers are responsible, as noted in the 2003 Institute of
Medicine report, Unequal Treatment:
Confronting Racial and Ethnic Disparities in
Health Care.2
One proposed reason for the delay in seeking treatment is that ethnic and racial minority
groups, in particular African Americans, perceive cancer as a death sentence.3 However,
recent studies have revealed that not all African
Americans associate breast cancer with certain
death.4-6 Some African American women manage
to live beyond a diagnosis of breast cancer by
living in the present and focusing on the positive.7, 8 This may also be true for other ethnic and
racial minority groups with other forms of cancer.

Patricia K. Bradley is assistant professor at Villanova University College

of Nursing in Villanova, PA, and coauthor of Getting Connected:
African-Americans Living Beyond Breast Cancer. Contact author:
patricia.bradley@villanova.edu. The author of this article is a paid consultant conducting workshops for the organization Living Beyond
Breast Cancer, which uses her booklet Getting Connected.

Patricia K. Bradley attends the State of the Science

symposium.

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AJN t March 2006 t Vol. 106, No. 3 Supplement

Publications target African American and Latina cancer

survivors. Research is just beginning to address management of late and long-term sequelae of cancer and cancer
treatment for ethnic minority populations.

Research is just beginning to address management

of late and long-term sequelae of cancer and cancer
treatment for ethnic minority populations.9 Issues related
to race and ethnicity, such as socioeconomic concerns
and disparities in access to care and treatment, must
be included in long-term survivor support programs.10
Living Beyond Breast Cancer (LBBC), a nonprofit educational agency in Ardmore, Pennsylvania, undertook an
initiative to enhance womens and health care providers
understanding of survivorship issues of African
Americans with breast cancer. Focus groups explored
African American womens thoughts and concerns about
surviving and living beyond a diagnosis. The central
theme that emerged was getting connected, and that
became the title of an educational booklet.
Getting Connected: African-Americans Living

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Nursing & Cancer Survivorship

Beyond Breast Cancer focuses on the cultural strengths

of African American women, rather than on their
deficits. According to women in the focus groups, positive coping is possible through connection to five
areas: self, God and nature, family and friends, other
survivors, and the health care team. The process of this
connection is outlined in the booklet, which is illustrated
with photographs of African American breast cancer
survivors and their support persons.
This booklet seeks to provide culturally relevant and
accessible guidance for African American women as
they go through the processes of diagnosis, treatment,
and beginning to live beyond breast cancer. In addition, Getting Connected can provide a model for training health care providers to deliver culturally
competent cancer outreach and care to African
American women.
LBBC also has produced a bilingual publication tailored to the Latina community. Its called We Celebrate
Tomorrow: Latinas Living Beyond Breast Cancer.
Survivors can go to www.lbbc.org for a complimentary copy of Getting Connected or We Celebrate
Tomorrow. Nurses and other health care professionals
can also find information at the site about bulk-rate
pricing and training. t
REFERENCES
1. American Cancer Society. Cancer facts and figures for
African Americans: 2005-2006. Atlanta, GA: The Society;
2005. http://www.cancer.org/downloads/STT/861403.pdf.
2. Institute of Medicine. Unequal treatment: confronting racial
and ethnic disparities in health care. Washington, DC:
National Academies Press; 2003.
3. Powe BD, Finnie R. Cancer fatalism: the state of the science.
Cancer Nurs 2003;26(6):454-65.
4. Bradley PK. The delay and worry experience of African
American women with breast cancer. Oncol Nurs Forum
2005;32(2):243-9.
5. Ashing-Giwa K. Quality of life and psychosocial outcomes in
long-term survivors of breast cancer: a focus on AfricanAmerican women. Journal of Psychosocial Oncology
1999;17(3/4):47-62.
6. Henderson PD, et al. African American women coping with
breast cancer: a qualitative analysis. Oncol Nurs Forum
2003;30(4):641-7.
7. Bradley PK, Scharf MN. Getting connected: African
Americans living beyond breast cancer. Ardmore, PA: Living
Beyond Breast Cancer; 2001.
8. Henderson PD, et al. Coping strategies among African
American women with breast cancer. Southern Online
Journal of Nursing Research 2003;4(3). http://www.snrs.org/
publications/SOJNR_articles/iss03vol04.pdf.
9. Aziz NM, Rowland JH. Cancer survivorship research among
ethnic minority and medically underserved groups. Oncol
Nurs Forum 2002;29(5):789-801.
10. Freeman HP. Poverty, culture, and social injustice: determinants of cancer disparities. CA Cancer J Clin 2004;54(2):72-7.

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not change their coping behavior, even when the

number of illnessrelated demands changed.29
Furthermore, in analyses over time involving
these same households, family members coping
behavior did not diminish the illness-related pressures over time.29
If family members are not coping with the illness-related demands, with what are they coping, if anything? There is evidence that family
members attempt to manage tension in the family system, especially heightened tension in the
patientspouse dyad, accentuated or caused by
the cancer.27-29 However, there are no known
studies of coping behavior in families with longterm survivors.
Family members struggle to maintain their
core functions when one of them is a long-term
survivor. Core functions of the family include
maintaining an emotionally and physically safe
environment, interpreting and reducing the
threat of stressful events (including the cancer)
for family members, and nurturing and fostering
the development of individual family members.
These functions include an attentive parenting
environment for children and the provision of
information and support to children when their
sense of security or well-being is threatened.12
Studies involving families experiencing both
recently diagnosed and long-term breast cancer
diagnoses provide evidence that these core functions are threatened when a member has cancer.18
Mothers of school-age or adolescent children
report that they are unable, especially during the
treatment phase of cancer, to be the parent that
they want to be and that they know they should
be.17 Spouses report that they do not know what
to do to support their wives, and they struggle
with what to say and how to help. Children
report not wanting to talk about their cancerrelated worries, questions, or concerns for fear
they will further burden the ill parent.15 There are
no known studies of core functions in families
affected by long-term adult survivors.

FUTURE DIRECTIONS FOR RESEARCH

Most of the research on survivorship was
obtained from studies of family members dealing
with the first three years of a cancer diagnosis,
most often of breast cancer. Future research will
need to examine the impact of malignant diseases other than breast cancer. We know very litAJN t March 2006 t Vol. 106, No. 3 Supplement

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State of the Science

REFERENCES

What to Ask Cancer Survivors

Overall, how do you think your family is doing with your cancer?
What do you observe in your family members to indicate
that things are going well for them in regard to your cancer?
What do you see in your family members responses to your
cancer that is of concern to you, if anything?
What do you want for your family that could help
them better handle your cancer?

tle about the long-term impact of breast cancer on

household members; we know almost nothing
about the impact of other types of cancers. Another
limitation of current studies is that most focus on
subjects who are white, middle-class, and educated.
Future research should include families of various
races and ethnicities, socioeconomic levels, and educational levels.
Most studies have related more to caregiving
than to the family as a unit. We know more about
the emotional distress and behavioral disruption in
family members than we know about the sources of
these changes.30 Knowing the family members difficulties will allow us to design effective programs,
services, and interventions to enhance family member functioning and long-term adjustment.
Longitudinal research designs using mixed methods and calling on the best of both interpretive and
empiric-analytic paradigms are needed.30 Studying a
family at a single point in time will not provide the
most accurate results; families are dynamic systems,
and their study requires multiple observation
points.31 Such studies should include self-report,
observational, and standardized questionnaires to
capture what long-term survivorship entails in the
daily lives of family members.31 Such research goes
beyond studies of caregivers to examine the experiences of family members and their functioning.
Nurses are the midwives of health and healing.
Nurse scientists can provide data-based evidence on
how to effectively help families heal from serious illness.1 In nursing, our science must match our practice disciplines commitment to healing and caring.
Future research priorities should include studies of
families dealing with long-term adult survivors.
Together, our goal should be to help families thrive,
not merely to survive cancer. t
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1. Lewis FM. Family-focused oncology nursing research: a

healing paradigm for future studies. Oncol Nurs Forum
2004;31(2):288-92.
2. Baider L, De-Nour AK. Couples reactions and adjustment
to mastectomy: a preliminary report. Int J Psychiatry Med
1984;14(3):265-76.
3. Gotay CC. The experience of cancer during early and
advanced stages: the views of patients and their mates.
Soc Sci Med 1984;18(7):605-13.
4. Hoskins CN. Adjustment to breast cancer in couples.
Psychol Rep 1995;77(2):435-54.
5. Hoskins CN, et al. Adjustment among husbands of women
with breast cancer. Journal of Psychosocial Oncology
1996;14(1):41-69.
6. Northouse LL, Swain MA. Adjustment of patients and husbands to the initial impact of breast cancer. Nurs Res
1987;36(4):221-5.
7. Omne-Ponten M, et al. Psychosocial adjustment among
husbands of women treated for breast cancer; mastectomy
vs. breast-conserving surgery. Eur J Cancer 1993;29A
(10):1393-7.
8. Ptacek JT, et al. Coping with breast cancer from the perspectives of husbands and wives. Journal of Psychosocial
Oncology 1994;12(3):47-72.
9. Toseland RW, et al. A problem solving intervention for caregivers of cancer patients. Soc Sci Med 1995;40(4):517-28.
10. Wellisch DK, et al. Psychosocial aspects of mastectomy: II.
the mans perspective. Am J Psychiatry 1978;135(5):543-6.
11. Armsden GC, Lewis FM. Behavioral adjustment and selfesteem of school-age children of women with breast cancer.
Oncol Nurs Forum 1994;21(1):39-45.
12. Armsden GC, Lewis FM. The childs adaptation to parental
medical illness: theory and clinical implications. Patient
Educ Couns 1993;22(3):153-65.
13. Lewis FM, et al. Blowing away the myths about the childs
experience with the mothers breast cancer. In: Baider L, et
al., editors. Cancer and the family. 2nd ed. New York:
Wiley; 2000. p. 201-21.
14. Lewis FM. Family issues in cancer care. In: Miaskowski C,
Buchsel PC, editors. Oncology nursing: assessment and clinical care. St. Louis: Mosby; 1999. p. 319-32.
15. Zahlis EH. The childs worries about the mothers breast
cancer: sources of distress in school-age children. Oncol
Nurs Forum 2001;28(6):1019-25.
16. Shands ME, et al. Mother and child interactions about the
mothers breast cancer: an interview study. Oncol Nurs
Forum 2000;27(1):77-85.
17. Zahlis EH, Lewis FM. The mothers story of the school-age
childs experience with the mothers breast cancer. Journal of
Psychosocial Oncology 1998;16(2):25-43.
18. Lewis FM, Darby EL. Adolescent adjustment and maternal
breast cancer: a test of the faucet hypothesis. Journal of
Psychosocial Oncology 2004;21(4):81-104.
19. Compas BE, et al. When mom or dad has cancer: markers of
psychological distress in cancer patients, spouses, and children. Health Psychol 1994;13(6):507-15.
20. Issel LM, et al. How children cope with mothers breast cancer. Oncol Nurs Forum 1990;17(3 Suppl):5-12.
21. Manne S. Couples coping with cancer: research issues and
recent findings. J Clin Psychol Med Settings 1994;1(4):317-30.
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Nursing & Cancer Survivorship

22. Manne SL, et al. Spousal negative responses to cancer patients:

the role of social restriction, spouse mood, and relationship satisfaction. J Consult Clin Psychol 1999;67(3):352-61.
23. Manne S, et al. The interpersonal process model of intimacy:
the role of self-disclosure, partner disclosure, and partner
responsiveness in interactions between breast cancer patients
and their partners. J Fam Psychol 2004;18(4):589-99.
24. Wenzel L, et al. Stress, coping, and health behavior. In: Glanz
K, et al., editors. Health behavior and health education: theory, research, and practice. 3rd ed. San Francisco: JosseyBass; 2002. p. 210-39.
25. Lazarus RS, Folkman S. Stress, appraisal, and coping. New
York: Springer Publishing Co.; 1984.
26. McCubbin MA, McCubbin HI. Families coping with illness:
the Resiliency Model of Family Stress, Adjustment, and
Adaptation. In: Danielson CB, et al., editors. Families, health
and illness: perspectives on coping and intervention.
St. Louis: Mosby; 1993. p. 21-63.
27. Lewis FM, Hammond MA. The fathers, mothers, and adolescents functioning with breast cancer. Fam Relat
1996;45(4):456-65.
28. Lewis FM, et al. The familys functioning with newly diagnosed breast cancer in the mother: the development of an
explanatory model. J Behav Med 1993;16(4):351-70.
29. Lewis FM, Hammond MA. Psychosocial adjustment of the
family to breast cancer: a longitudinal analysis. J Am Med
Womens Assoc 1992;47(5):194-200.
30. Lewis FM, et al. Predictors of spousal depressed mood in
women with breast cancer. Oncol Nurs Forum 2005;32(1):
165. [abstract].
31. Woods NF, Lewis FM. Design and measurement challenges
in family research. West J Nurs Res 1992;14(3):397-402.

HOURS

Continuing Education

TEST

Registration fee: $16.95

GENERAL PURPOSE: To examine the strengths and limitations of the current literature on families and cancer survivorship and suggest directions for future research in
this field.

LEARNING OBJECTIVES: After reading this article and taking the test (answer coupon on page 97), you will be
able to:
describe the insights that have been gained so
far in studying the impact of cancer on families.

The Effects of Cancer Survivorship on

Families and Caregivers
1. Armsden and colleagues found that, compared
to children with healthy mothers, children of
mothers with either cancer or diabetes tend to
a. receive less nurturing.
b. have better coping skills.
c. have lower self-esteem.
d. have more sensitivity.
2. When parents with cancer see that the disease
distresses a child, they tend to
a. experience incapacitating guilt.
b. ask caregivers to help the child cope.
c. comfort the child but offer no explanations.
d. admit that they do not know what to say or
do.
3. A study by Lewis and Hammond of families of
women with breast cancer indicated that, when
the number of illness-related demands changed,
family members
a. managed family tension better.
b. did not change their coping behavior.
c. sought help outside the family.
d. reduced the threat of stressful events.
4. Children of parents who have cancer most
often report that they
a. want to help take care of the ill parent.
b. do not want to be left behind when the parent
dies.
c. feel that they are being punished for perceived
misdeeds.
d. do not want to talk about their cancer-related
concerns.
5.To date, most studies on survivorship have
related primarily to
a. caregiving.
b. sources of distress.
c. the family as a unit.
d. the long-term impact of cancer.

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