Professional Documents
Culture Documents
Editorial B
Editorial B
ancer affects not just those who have the included cross-sectional, descriptive designs focus-
2 HOURS
Continuing Education
have demonstrated emotional distress and behav- helped them cope with the impact of the diagnosis.20
ioral disruption in spouses of women with breast No studies have looked at these factors beyond the
cancer. Significantly elevated levels of distress in acute phase.
spouses have been documented up to three years Couples experiencing the acute phase of breast
after diagnosis; according to some studies, distress in cancer treatment are known to function in survival
the spouse exceeds that in the diagnosed patient.2-10 mode, during which time competing demands dis-
Most of our knowledge of children’s experi- tract them from attending to each other’s needs,
ences of a parent who has cancer is limited to two thoughts, and feelings, as well as to specific needs for
years after diagnosis.11 This distress relates support about the cancer. Very little is known about
directly to the child’s illness-related concerns, as the couples’ interactions in long-term survivorship.
well as to the real and symbolic threats to the We speculate two extremes: either benefit-finding
child’s sense of security.12-14 In a recent study of behavior (identifying positive aspects in the cancer
school-age children, 81% of children whose experience), or heightened interpersonal tension in
mothers had early-stage breast cancer feared that the couples’ relationship. But scientists do not know
she was going to die from the disease.15 what predicts a couple’s ability to see the positive in
There is substantial evidence showing that the long-term survivorship or what predicts heightened
quality of parenting is affected when a parent tension in the relationship. To date there has been no
has cancer.16-18 Most evidence for this claim research in this area with long-term survivors.
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 chil- Scientists do not know what predicts a
dren of parents who are not ill. In a seminal study
looking both at children whose mothers had breast couple’s ability to see the positive in long-term
cancer or diabetes and at children whose mothers
were healthy, children of mothers with either cancer
survivorship or what predicts heightened
or diabetes tended to have lower self-esteem than
did children of healthy mothers.11
Family members do not know, understand, or tension in the relationship.
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 under- Families try to cope with both the impact of the
stand, do not focus on, and report not having the cancer and the tension in the family caused or accen-
skills or confidence to support other family mem- tuated by the cancer. “Coping” is a popular concept
bers reacting to cancer in the family. This has been in nursing and behavioral medicine.24 Although the
extensively documented in child-rearing families concept has salience in studies of an individual’s
affected by breast cancer,15-17, 20 as well as in recent adaptation to delimited stressors, its validity in
studies involving the spouse–patient dyad.21-23 Even depicting a family’s response to long-term survivor-
when parents with cancer see that the disease dis- ship is less clear.25, 26 In two studies of families
tresses a child, parents say they do not know what affected by maternal breast cancer, illness-related
to say or do. They report feeling excessively con- demands reported by both the patient and
sumed by their own feelings of tiredness or sickness spouse–caregiver never significantly predicted family
and by the struggle with their own illness experi- member coping behavior.27, 28 In another study
ence.17 Approximately 25% of younger children and involving 111 families of women with breast cancer,
15% of adolescents whose mothers had cancer data obtained at three different occasions at four-
reported that no one, not even family members, month intervals revealed that family members did
Beyond Breast Cancer focuses on the cultural strengths not change their coping behavior, even when the
of African American women, rather than on their number of illness–related demands changed.29
deficits. According to women in the focus groups, posi- Furthermore, in analyses over time involving
tive coping is possible through connection to five
areas: self, God and nature, family and friends, other
these same households, family members’ coping
survivors, and the health care team. The process of this behavior did not diminish the illness-related pres-
connection is outlined in the booklet, which is illustrated sures over time.29
with photographs of African American breast cancer If family members are not coping with the ill-
survivors and their support persons. ness-related demands, with what are they cop-
This booklet seeks to provide culturally relevant and ing, if anything? There is evidence that family
accessible guidance for African American women as
members attempt to manage tension in the fam-
they go through the processes of diagnosis, treatment,
and beginning to live beyond breast cancer. In addi- ily system, especially heightened tension in the
tion, Getting Connected can provide a model for train- patient–spouse dyad, accentuated or caused by
ing health care providers to deliver culturally the cancer.27-29 However, there are no known
competent cancer outreach and care to African studies of coping behavior in families with long-
American women. term survivors.
LBBC also has produced a bilingual publication tai- Family members struggle to maintain their
lored to the Latina community. It’s called We Celebrate
Tomorrow: Latinas Living Beyond Breast Cancer. core functions when one of them is a long-term
Survivors can go to www.lbbc.org for a complimen- survivor. Core functions of the family include
tary copy of Getting Connected or We Celebrate maintaining an emotionally and physically safe
Tomorrow. Nurses and other health care professionals environment, interpreting and reducing the
can also find information at the site about bulk-rate threat of stressful events (including the cancer)
pricing and training. t for family members, and nurturing and fostering
the development of individual family members.
REFERENCES These functions include an attentive parenting
1. American Cancer Society. Cancer facts and figures for environment for children and the provision of
African Americans: 2005-2006. Atlanta, GA: The Society;
2005. http://www.cancer.org/downloads/STT/861403.pdf. information and support to children when their
2. Institute of Medicine. Unequal treatment: confronting racial sense of security or well-being is threatened.12
and ethnic disparities in health care. Washington, DC: Studies involving families experiencing both
National Academies Press; 2003. recently diagnosed and long-term breast cancer
3. Powe BD, Finnie R. Cancer fatalism: the state of the science. diagnoses provide evidence that these core func-
Cancer Nurs 2003;26(6):454-65.
tions are threatened when a member has cancer.18
4. Bradley PK. The delay and worry experience of African
American women with breast cancer. Oncol Nurs Forum Mothers of school-age or adolescent children
2005;32(2):243-9. report that they are unable, especially during the
5. Ashing-Giwa K. Quality of life and psychosocial outcomes in treatment phase of cancer, to be the parent that
long-term survivors of breast cancer: a focus on African- they want to be and that they know they should
American women. Journal of Psychosocial Oncology
1999;17(3/4):47-62. be.17 Spouses report that they do not know what
6. Henderson PD, et al. African American women coping with to do to support their wives, and they struggle
breast cancer: a qualitative analysis. Oncol Nurs Forum with what to say and how to help. Children
2003;30(4):641-7. report not wanting to talk about their cancer-
7. Bradley PK, Scharf MN. Getting connected: African related worries, questions, or concerns for fear
Americans living beyond breast cancer. Ardmore, PA: Living
Beyond Breast Cancer; 2001. they will further burden the ill parent.15 There are
8. Henderson PD, et al. Coping strategies among African no known studies of core functions in families
American women with breast cancer. Southern Online affected by long-term adult survivors.
Journal of Nursing Research 2003;4(3). http://www.snrs.org/
publications/SOJNR_articles/iss03vol04.pdf.
FUTURE DIRECTIONS FOR RESEARCH
9. Aziz NM, Rowland JH. Cancer survivorship research among
ethnic minority and medically underserved groups. Oncol Most of the research on survivorship was
Nurs Forum 2002;29(5):789-801. obtained from studies of family members dealing
10. Freeman HP. Poverty, culture, and social injustice: determi- with the first three years of a cancer diagnosis,
nants of cancer disparities. CA Cancer J Clin 2004;54(2):72-7. most often of breast cancer. Future research will
need to examine the impact of malignant dis-
eases other than breast cancer. We know very lit-
REFERENCES
1. Lewis FM. Family-focused oncology nursing research: a
healing paradigm for future studies. Oncol Nurs Forum
What to Ask Cancer Survivors 2004;31(2):288-92.
• Overall, how do you think your family is doing with your cancer? 2. Baider L, De-Nour AK. Couples’ reactions and adjustment
to mastectomy: a preliminary report. Int J Psychiatry Med
• What do you observe in your family members to indicate 1984;14(3):265-76.
that things are going well for them in regard to your cancer? 3. Gotay CC. The experience of cancer during early and
• What do you see in your family members’ responses to your advanced stages: the views of patients and their mates.
cancer that is of concern to you, if anything? Soc Sci Med 1984;18(7):605-13.
• What do you want for your family that could help 4. Hoskins CN. Adjustment to breast cancer in couples.
Psychol Rep 1995;77(2):435-54.
them better handle your cancer?
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 hus-
bands to the initial impact of breast cancer. Nurs Res
tle about the long-term impact of breast cancer on 1987;36(4):221-5.
household members; we know almost nothing 7. Omne-Ponten M, et al. Psychosocial adjustment among
about the impact of other types of cancers. Another husbands of women treated for breast cancer; mastectomy
vs. breast-conserving surgery. Eur J Cancer 1993;29A
limitation of current studies is that most focus on (10):1393-7.
subjects who are white, middle-class, and educated. 8. Ptacek JT, et al. Coping with breast cancer from the perspec-
Future research should include families of various tives of husbands and wives. Journal of Psychosocial
races and ethnicities, socioeconomic levels, and edu- Oncology 1994;12(3):47-72.
cational levels. 9. Toseland RW, et al. A problem solving intervention for care-
givers of cancer patients. Soc Sci Med 1995;40(4):517-28.
Most studies have related more to caregiving
10. Wellisch DK, et al. Psychosocial aspects of mastectomy: II.
than to the family as a unit. We know more about the man’s perspective. Am J Psychiatry 1978;135(5):543-6.
the emotional distress and behavioral disruption in 11. Armsden GC, Lewis FM. Behavioral adjustment and self-
family members than we know about the sources of esteem of school-age children of women with breast cancer.
these changes.30 Knowing the family members’ diffi- Oncol Nurs Forum 1994;21(1):39-45.
culties will allow us to design effective programs, 12. Armsden GC, Lewis FM. The child’s adaptation to parental
medical illness: theory and clinical implications. Patient
services, and interventions to enhance family mem- Educ Couns 1993;22(3):153-65.
ber functioning and long-term adjustment. 13. Lewis FM, et al. Blowing away the myths about the child’s
Longitudinal research designs using mixed meth- experience with the mother’s breast cancer. In: Baider L, et
ods and calling on the best of both interpretive and al., editors. Cancer and the family. 2nd ed. New York:
Wiley; 2000. p. 201-21.
empiric-analytic paradigms are needed.30 Studying a
14. Lewis FM. Family issues in cancer care. In: Miaskowski C,
family at a single point in time will not provide the Buchsel PC, editors. Oncology nursing: assessment and clini-
most accurate results; families are dynamic systems, cal care. St. Louis: Mosby; 1999. p. 319-32.
and their study requires multiple observation 15. Zahlis EH. The child’s worries about the mother’s breast
points.31 Such studies should include self-report, cancer: sources of distress in school-age children. Oncol
Nurs Forum 2001;28(6):1019-25.
observational, and standardized questionnaires to
16. Shands ME, et al. Mother and child interactions about the
capture what long-term survivorship entails in the mother’s breast cancer: an interview study. Oncol Nurs
daily lives of family members.31 Such research goes Forum 2000;27(1):77-85.
beyond studies of caregivers to examine the experi- 17. Zahlis EH, Lewis FM. The mother’s story of the school-age
ences of family members and their functioning. child’s experience with the mother’s breast cancer. Journal of
Psychosocial Oncology 1998;16(2):25-43.
Nurses are the midwives of health and healing.
18. Lewis FM, Darby EL. Adolescent adjustment and maternal
Nurse scientists can provide data-based evidence on breast cancer: a test of the “faucet hypothesis.” Journal of
how to effectively help families heal from serious ill- Psychosocial Oncology 2004;21(4):81-104.
ness.1 In nursing, our science must match our prac- 19. Compas BE, et al. When mom or dad has cancer: markers of
tice discipline’s commitment to healing and caring. psychological distress in cancer patients, spouses, and chil-
dren. Health Psychol 1994;13(6):507-15.
Future research priorities should include studies of
20. Issel LM, et al. How children cope with mother’s breast can-
families dealing with long-term adult survivors. cer. Oncol Nurs Forum 1990;17(3 Suppl):5-12.
Together, our goal should be to help families thrive, 21. Manne S. Couples coping with cancer: research issues and
not merely to survive cancer. t recent findings. J Clin Psychol Med Settings 1994;1(4):317-30.
23. Manne S, et al. The interpersonal process model of intimacy: Continuing Education
the role of self-disclosure, partner disclosure, and partner
responsiveness in interactions between breast cancer patients TEST Registration fee: $16.95
and their partners. J Fam Psychol 2004;18(4):589-99.
24. Wenzel L, et al. Stress, coping, and health behavior. In: Glanz GENERAL PURPOSE: To examine the strengths and limita-
K, et al., editors. Health behavior and health education: the- tions of the current literature on families and cancer sur-
ory, research, and practice. 3rd ed. San Francisco: Jossey- vivorship and suggest directions for future research in
Bass; 2002. p. 210-39. this field.
25. Lazarus RS, Folkman S. Stress, appraisal, and coping. New LEARNING OBJECTIVES: After reading this article and tak-
York: Springer Publishing Co.; 1984. ing the test (answer coupon on page 97), you will be
26. McCubbin MA, McCubbin HI. Families coping with illness: able to:
the Resiliency Model of Family Stress, Adjustment, and
Adaptation. In: Danielson CB, et al., editors. Families, health • describe the insights that have been gained so
and illness: perspectives on coping and intervention. far in studying the impact of cancer on families.
St. Louis: Mosby; 1993. p. 21-63.
27. Lewis FM, Hammond MA. The father’s, mother’s, and ado- The Effects of Cancer Survivorship on
lescent’s functioning with breast cancer. Fam Relat
1996;45(4):456-65. Families and Caregivers
28. Lewis FM, et al. The family’s functioning with newly diag- 1. Armsden and colleagues found that, compared
nosed breast cancer in the mother: the development of an to children with healthy mothers, children of
explanatory model. J Behav Med 1993;16(4):351-70. mothers with either cancer or diabetes tend to
29. Lewis FM, Hammond MA. Psychosocial adjustment of the a. receive less nurturing.
family to breast cancer: a longitudinal analysis. J Am Med b. have better coping skills.
Womens Assoc 1992;47(5):194-200. c. have lower self-esteem.
30. Lewis FM, et al. Predictors of spousal depressed mood in d. have more sensitivity.
women with breast cancer. Oncol Nurs Forum 2005;32(1):
165. [abstract]. 2. When parents with cancer see that the disease
31. Woods NF, Lewis FM. Design and measurement challenges distresses a child, they tend to
in family research. West J Nurs Res 1992;14(3):397-402. 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.