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Issues, problems, and challenges for families coping with breast cancer
Issues, Problems, and Challenges for Families Coping With Breast Cancer B. Ann Hilton
ANCER poses enormous physical and psychological challenges from the moment it is first suspected. Learning to live with cancer is no easy task. Learning to live with someone else's cancer may be even more difficult. Studies suggest that the ways in which people assess such situations as cancer may be related to the efficacy of their psychosocial adjustment to the disease. 1,2 For the most part, studies of cancer patients have focused on patients' adaptation and have overlooked the concurrent adaptation required of families3-6 despite the increasing awareness of the importance of the social support network in which the diagnosed member belongs 7-~7 and despite the recognition that it is not only the isolated patient but the family that experiences the illness. 4'~s'22 Studies have focused on individual member adjustment and the individual's perspective of family adjustment. 23-3s There is an increasing recognition of the family as a critical focus for health c a r e 39-40 as well as an increasing quantity of literature addressing family-focused interventions. However, there is a scarcity of research that examines the adaptation of the family from the family's perspective to the cancer experience. 41-45 The purpose of this article is to present the analysis of one component of a larger grounded theory study of family adaptation to breast cancer from the time of diagnosis to 12 months later. It will present the themes shown in family interviews for the issues, problems, and challenges that partnered families faced during the initial year. Although not all of the partnered families who enrolled have completed the study, and not all transcripts have been analyzed to date, this analysis represents 12
C
From the School of Nursing, University of British Columbia, Vancouver, BC Canada. B. Ann Hilton, RN, PhD: Associate Professor, School of Nursing, University of British Columbia. This research was supported by the British Columbia Health Research Foundation. Address reprint requests to B. Ann Hilton, RN, PhD, Associate Professor, School of Nursing, University of British Columbia, 1"206-2211 Wesbrook Mall, Vancouver, BC Canada V6T 2B5. Copyright 9 1993 by W.B. Saunders Company 0749-2081193/0902-00(M$5.00/0
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families (Table 1) for all five interview points (time of diagnosis, 2 to 3 weeks, 2 to 3 months, 7 to 8 months, and 12 months after definitive surgery/diagnosis) and an additional 23 partnered families in which three or four interviews have each been analyzed. METHODS
Forty-nine partnered and 13 nonpartnered women were enrolled in the study that represented various family structures. Families were recruited into the study through surgeons. Inclusion criteria were that the partner/mother was newly diagnosed with breast cancer, awaiting treatment, and had no prior cancer diagnosis. Families were excluded when cancer had been diagnosed beyond the axillary lymph nodes, or they had other acute disease or chronic psychopathology. The current sample consisted of 35 families. The mean age of the women was 53 years and the mean age of partners was 55 years with a range of 27 to 76 years. Nine couples were between 25 and 44 years of age, and 14 couples were older than 54 years. The educational background of the couples widely ranged from 23 of the women and 12 of the men with high school education or less to 8 women and 10 men having college preparation. About half the number of families included partners who both worked. The other women were either full-time housewives (n = 8), retired (n = 7), or unemployed (n = 1), whereas 13 of the partners were retired. One third of the families each had family incomes less than $40,000, between $40,000 to $60,000, and above $60,000. Of the 35 families, 12 had children living at home ranging in age from 2 to 23 years with two other families with mentally handicapped adult children at home. Five families had one child, and the remainder had two children living at home. Nine families had children under 12 years of age, and 5 families had teenage or older children living at home, with some having both young and older children. At least 14 families had adult children not living at home. The sample reflected several cultural groups. Twenty-two of the women had lumpectomy Seminars in Oncology Nursing, Vol 9, No 2 (May), 1993: pp 88-100
FAMILIES COPING WITH CANCER
Table 1. Information Regarding Families Analyzed Family A: Family B: Family C: Family D: Family E: Family F: Family G: Family H: Family I: Family J: Family K: Family L:
Mastectomy, Reconstruction, (ages 51/45 years) Lumpectomy, nodes positive, RT, and tarnoxifen (ages 63/67 years) Lurnpectomy, nodes negative, RT, (ages 46/47 years) Lumpectorny, Recurrence at 7 months (ages 46/51 years and children ages 20/17 years) Lumpectomy, nodes negative, RT (ages 64/68 years and adult children) Lumpectorny (ages 43/41 ) Lurnpectorny, nodes negative, RT, CT (ages 33/32 years and child ages 3 years) Lurnpectomy, nodes negative, RT (ages 67/69 years and adult children) Lumpectomy, nodes negative, RT (ages 63/70 years and adult children) Mastectorny, nodes negative, (ages 43/44 years and children 11/14 years) Mastectorny, (ages 41/45 years and child ages 10 years) Lumpectorny, nodes negative, RT (ages 53/55 years)
with all but one of the remaining 12 having mastectomy. One woman had radiation (RT) and chemotherapy (CT) before her surgery. Of the 30 women who had axillary node dissection, 21 had negative nodes, but 9 had cancer found in at least one of the nodes. Further treatment consisted of no treatment beyond the surgery (n = 8), RT with or without tamoxifen (n = 16), tamoxifen alone (n = 1), or CT with or without RT (n = 10). Although several women identified more suspicious lumps, only one woman developed breast cancer recurrence in the first year. Family interviews were conducted at each family's residence with the same interviewer doing all interviews for each family to provide continuity. A focused interview was conducted using trigger questions from The Problem Centered Family Coping Interview and the Marital Dyad Interview guides 46 together with open-ended questions to show the family's experience of coping with the breast cancer. Tapes were transcribed, and analyses were performed to identify substantive themes in the family coping process. Concurrent analyses showed themes for further exploration. Data were subjected to content analysis and constant comparative analyses as outlined by Glaser and Strauss. 47 Themes were identified around issues, problems, and challenges and their impact on family members, the ways in which the families coped with these issues and challenges, and the outcomes of that coping. This article will be limited to the data
89
pertaining to the issues, problems, and challenges reported by the families. Throughout the process, a second coder verified the fit. Discrepancies were resolved by revising the definition, by recoding the unit of analysis, or by identifying a new property or category. The further conceptual analysis that describes the family process of coping with these problems and challenges is beyond the scope of this article. FINDINGS
There were basically three themes to the issues, problems, and challenges: (1) getting the cancer taken care of, (2) family patterns, and (3) managing other issues. Each of these themes had categories within them. The categories of problems, issues, and the frequency of occurrence of these problems for each family at each interview point are shown in Figures 1, 2, 3, 4, and 5. These figures illustrate how the frequency of the problems and challenges shifted over time. The themes and several of the exemplary categories will be discussed.
Taking Care of the Cancer The theme of Taking Care of the Cancer referred to issues and problems confronted by the family experiencing the diagnosis and treatment of cancer and living with the uncertainties. The categories within this theme were uncertainty; waiting for appointments, tests, and treatments; hearing, facing, and living with the news; feeling informed; making treatment decisions; concerns about the patients' health care and its provisions; and undergoing tests, surgery, and treatment, and coping with the physical and accompanying psychological effects caused by these procedures. Uncertainty. "The worst part was the uncertainty!" Although there was always some element of uncertainty for these families over the course of the first year after cancer diagnosis, by far the greatest uncertainty was during the initial diagnostic period. At that time the families did not know whether the suspicious lump/abnormal mammogram meant cancer; and if it did, they did not know the extent of the illness nor its treatment implications. In addition to the uncertainty related to actual test procedures and what the families would be required to do, there were also concerns about the reliability of these procedures and whether they would detect something if it was present, whether
90
B. A N N H I L T O N
A ~
c
Uncertainty
7
8
2
Waiting for appointments, results and treatment
1
2
Hearing, facing and living with the diagnosis of cancer
5
i3
III
Not feeling informed
2
Making treatment decisions
1
Concerns about their health care and its provision
1
Tests, treatment, & accompanying physical & psychological effects
3
HIHBHm m B B B I I~ ~m~ml 1
1 1
1
1 1 1
1
1
1
1
2
1
2
2
1
1
Family communication patterns
1
1
2
1 1
1
1
Major marital discord
6
3
2
2
2
1
1
2
2
1
1
1
2
1
1
1
1
28
8 1
3
1
1
2
1
2 2 1
Loss of control
1
1
Financial concerns
1
--~ Health concerns of the family
1 1 1
Concerns related to friends
1
25
7
2
1
1 1 19
12
1
1
1
15
8
1
Work issues
5
3
1
Shifting priorities
Managing overload .| Total
1
2
1
.=~ Making household arrangements E Disrupted plans
==
1
1
Emotional response issues
1
1
43
5
2
Family support behaviors .=
Total
Frequency of Responses in Each Family at Diagnosis
Categories of Problems & Issues
1
1
1
1
1
1
9
24
13
15
7
the surgery "got it all," or whether the other treatments would provide a cure. The uncertainty lessened in degree as some questions became clear, but uncertainty regarding the future remained a major concern. For some of the families, the needed treatment and its implications hung over their heads even before the diagnosis. Many of the patients were referred to the cancer clinic for a recommendation for need for further treatment, particularly when there was any question in the surgeon's mind. Although the majority of families believed that the treatments were effective, this did not necessarily mean that they were confident that cancer would no longer be a threat to them. The treatment may have helped their cancer situations but whether it provided a cure was another matter. They also wondered about the reason for symptoms that they could not explain. Normally when people get aches or pains, they explain them with reasonably
1
1
3
1
3
1
7 3 1
21
12
14
6
3 I 16,9 I
R g 1.
The frequency of 0c-
currence of problems and issues for each femiiy at diagnosis.
neutral connotations. However, for these patients, the origin of aches, pains, and unusual symptoms was frightening because they knew cancer was not outside the realm of possibility. Their uncertain state was also heightened by reminders and by the occurrence of new or unusual symptoms, particulaxly when further suspicious lumps were found. This happened to at least 11 women, and several required further tests. As time for check-ups approached, the concern that new cancers might be detected by their doctors generated stress particularly because they recognized that they were "more of a risk factor now." Although they would want cancer to be found if it was present, concern was expressed about the fallibility of diagnostic tests. Several families were uncertain about the causes of the cancer, and they posed various possibilities. For example, they wondered if making dietary changes (eg, decreasing fat and caffeine) would make a difference in chances of recurrence.
FAMILIES COPING WITH CANCER
91
Frequency of Responses in Each Family at 2 to 3 Weeks After Surgery/Diagnosis
Categories of Problems and Issues A Urceaalnfy
B
1
C
O
3
E
F
G
Hr,
J
K
4
3
2
2
4
2
Waiting for appointments, results and treatment (,3 Hearing, facing and living with the diagnosis of cancel r
2
1 2
Not feeling informed
1
2
2
3
1
1
1
Making treatment decisions
1
5
5
2
1
2
2
5
1
3
4
1
Family communication patterns
2
Family support behaviors
1
1
27
15
1
7'
1
3
1
1
6
4 i 1
1
8
1
1
2
1
1
1
1
t
1
1
2
1
3
1
Major marital discord
1
1
i Emotional response issues
L 4
1
4
1
Concerns about their health care and its provision Tests, treatment & accompanying physical & psychological effects
Total
9
'2
47 7 8 3
1
1
2
o. Making household arrangements
1
Disrupted plans
1
1
2 2
Shifting priorities
1
1 0
Loss of control Work issues
1
1
Financial concerns
0
1
--~ Health concerns of the family
Fig 2. The frequency of occurrence of problems and issues for each family at 2 t o 3 weeks after surgery/diagnosis.
Concerns related to friends
1
Managing overload i Total
1
Many families wondered about whether the patient Would live or die and discussed concerns about dying. Some families were very forthright in stating this concern, "You have a tendency to think the w o r s t . . . I had myself almost remarried to another woman and was concerned about the children and would she love the children as she [wife] does." In another family, the woman was disturbed because she felt that her family was already considering her " g o n e . " " I t disturbs me almost as if, well, there she goes, she's gone. I am very much here and very much willing to give it my best."
Hearing, facing, and living with the news (of cancer, of nodal involvement, of recurrence). Finding out that the lump was cancerous was traumatic and generally a surprise. Several families received conflicting results and were " o n a roller
10
1
1
1
1
1
10
8
5 4
1 10
1
1
15
6
19
15
17
1
1
13
18
4 8
149
coaster ride" when one test showed the lump as benign and/or their surgeon was confident of a negative result, and another test indicated cancer. How the news of the cancer was communicated was at times an issue. It usually took a week after the surgery before the full pathology report was available. Therefore, for the patient/family to be told the news in the surgeon's office meant that scheduling an appointment was necessary. To circumvent this difficulty and to decrease the uncertainty time for these families, some surgeons called the patient at home or at work and told them over the phone. However, receiving such distressing information over the phone was sometimes problematic, and much depended on the communication style of the surgeon and the availability of support for the patient. What cancer meant to the family often influ-
92
B. A N N HILTON
Frequency of Responses in Each Family at 2 to 3 Months After Surgery/Diagnosis
Categories of Problems & Issues A
B
C
D
E
F
G
1
3
4
3
H
TOTAL
I
J
K
L
1
2
3
2
i
Unceaalnty
2
Waiting for appointments, results and treatment
1 il
Heating, facing and living with the diegno~ of cancer "6
Not feeling informed
o
Making treatment decisions
1
3
1
2
1
1
1 1
1 2
Emotional response issues
9 1
Family communication patterns Family support behaviors Ma~or marital discord ~L Making household arrangements Disrupted plans
2
1
8
nmu,=u
nnnmmmu
InUmml llllllll IIlIll iIIiiml Immml
6
1
1
4
,1 1
3
2
49
2
6
1
3
1
4
1
1
1
1
5
2
iniil
Shifting priorities
6
1
1
1
1
5
Loss of control , Work issues
0
1
1
1
1
Financial concerns Health concerns of the family
1
1
11
Concerns related to friends
1
1
1
Managing overload Total
10
1
Ccmcem.,s about their health care and its provision Tests, treatment & accompanying physical & psychological effects
21
5
17
1
1
22
1
1
1
12
4
1
1 t
16
8
enced pessimism/optimism about their situation. Although most families knew of others who had cancer, one family found it problematic that they did not know anyone. The families discussed knowing others who had cancer or who had died of cancer and the impact of this on them. Although there were some positive perceptions of these experiences, many were negative, and some were especially disturbing. For many families, this was their first experience in coping with anything serious, and it shook the myth of family invincibility. It may also have been the first time that their wife/ mother had been ill, requiring them to alter their image of her as strong and healthy. Having to take on the "sick role" was also difficult for the woman herself. Patients and families were often being reminded of cancer. Although they may have wanted to for-
1
15
16
15
6 3
1
1
10 6
1
1
9
21
5
9
147
Fig 3. The frequency of occurrence of proMems and issues for each f a m i l y at 2 t o 3 m o n t h s after surgery/diagnosis.
get it, they usually could not "avoid it or ignore it," particularly when treatments were on their agenda for the day. Being constantly reminded was particularly evident for patients who had uncomfortable physical symptoms. However, other reminders for the families were TV, friends, and magazine articles. Some wanted to get on with their lives but found the intrusion of such events quite bothersome. Other people talking about cancer and relating negative stories may have been irritating. A few families found it difficult to participate in this study in which they talked about their cancer experience, and two families withdrew because it was too difficult. Feeling informed. Families often said that they knew very little about cancer and "just the word cancer was enough to scare" them. Lack of general knowledge and lack of specific facts and in-
FAMILIES COPING WITH CANCER
93
Frequency of Responses in Each Family at 7 to 8 Months After Surgery/Diagnosis
Categories of Problems and issues
TOTAL
i
iii
A
B
2
2
C
D
E
F
5
4
2
G
H
I
Ij
K
L
i
Uncertainty ' Waiting for appointments, results and treatment
1
2
1
Hearing, facing and living with the diagnosis of cancer
1
Not feeling informed
1
0=
' Making treatment decisions
1
Concerns about their health I care and its provision
1
! Tests, treatment & accompanying physical & psychological effects
3
2
3
21
1
2
2
4
;1
1
1
2
1
2
14 6
2
1
4
1 3
2
2 7
2
2
2
3
24
2
4
1
6
i
~. -r
Emotional response issues
1
1
Family communication patterns
1
1
1
1
1
Family support behaviors
1
-~
2
3
Major marital discord
1
.~ ~
1
2
Making household arrangements
1
"s
1
2
oJ
Disrupted plans
1
z
Shifting priorities
1
I
1
2
1
1
1
1
1
Loss of control
5
I
Work issues
1
Financial concerns
_=
1
Health concerns of the family
2
1
2
1
1
2
2
1
5 2
1
1
12
J=
O
Fig 4. The frequency of occurrence of problems and issues for each family st 7 to 8 months after surgery/diagnosis.
Concerns related to friends Managing overload Total
formation regarding their own situation was problematic. Most families wanted to be informed regarding their cancer situation, what they might expect to happen in the hospital and from the treatments, what the prognosis was, and how they could prevent further cancer. Although a lack of knowledge or understanding was a problem for some families, for other families there seemed to be almost a preference for minimal information. " I ' v e done a bit of r e a d i n g . . , don't tell me what you're gonna do, just do it!" Information was obtained from health care professionals, from books, from the media, from recalling their own experiences, and from others. Problems were identified with each of these sources. For example, some families indicated being unable to tell where they fit in because the cases cited in books were more serious. The cur-
10
1
1
1
10
9
17
26
1
1
1
1
9
0
16
6
2
g
1
1
7
20
3
125
rent controversy about reconstruction using implants was difficult for one family because they felt they were getting conflicting information with what they heard on TV. Comparing their treatment plan with that of others generated confusion for some when unexplained differences were apparent. Several families did not know where to get information or what to ask, and some felt silly or reticent to ask. Some felt overwhelmed and were not able to think clearly when talking with the doctor. Other types of identified problems were a lack of clarity of the technical information obtained, discrepant information, inability to interpret the information, concerns about the accuracy or the negativity of the information, poor timing, and the fact that reading raised other unwanted concerns that only added to their distress.
94
B. ANN HILTON
Frequency of Responses in Each Family 1 Year After Surgery/Diagnosis
Categories of Problems and IssueS A , Uncertainty
B
1
C
D
E
F
3
4
2
2
2
2
I
I
2
I
G
H
I
J
2
1
1
TOTAL K
L 16
Waiting for appointments, , results and treatment oc
Hearing, facing and living with the .diagnOsis of cancer 1
"6 Not feeling informed oa
I
Making treatment decisions Concerns about their health care and its provision
I I
2
1
5
3
4
2
10
Tests, treatment & accompanying physical & psychological effects
1
3 1
Emotional response issues
1
Family communication patterns
1
1
1
1
Major marital discord
9~
Making household arrangements
u.
Dksruptedplans
1
9~
2
z
2
1
1
3
1
4
1 1
1
1
I
1
I
2
1
i'
t
i
1
1
2
Corcems related to friends
Total
4 f
1 1
Financial concerns
Managing overload
5
1
Loss of control
Health conc~.s of the family
1
1
1
1
Shifting priorities
Work issues
,1
16
1
Family support behaviors ~.
3
~2
7
7
i
10
2
2
2
1
2
1 1
15
1
20
5
Making treatment decisions. Families were very involved in making treatment decisions. For some, making these decisions was not a problem, but for others it was a challenge that required them to be knowledgeable about options and confident and concordant regarding the selected option. Decision making was particularly difficult when the family had to wrestle with differing opinions from their physicians and/or among themselves. In addition to the importance of the decision was the stress when making the decision. One patient stated that she normally did not fall apart when making decisions, but this time she fell apart dealing with simple problems. Concerns about their health care and its provision. Families, and particularly patients, interacted with many health professionals. Although many were satisfied with their care, their experi-
3
1 13
13
8
,5
4
4
0
10
103
Fig 5. The frequency o f occurrence of problems end issues for each family a t 1 year after surgery/diagnosis.
ences in the health care settings, and their interactions with health care workers, others identified problems in these areas. Comments were made about attitudes and competence of health care workers. Some staff did not show caring attitudes and/or did not have the skills to perform the needed care. Overhearing doctors and others discussing them was troublesome to the patients. Other problems included feeling that they were discharged too soon, not being able to communicate well with health workers (with only a few difficulties being language-based), and receiving contradictory directions. Comments were also made about understaffing, inability to get a semiprivate room, lack of support groups, machine breakdowns, and disturbances from other patients and visitors. Obtaining a diagnosis was a major challenge for some families when they were sure that something
FAMILIES COPING WITH CANCER
was wrong. A 27-year-old woman who noticed a lump in her breast got her physician to order a mammogram, which proved negative. When the lump got bigger, she demanded action. When attempts were made to finally remove it, the lump was larger than expected and could not be totally resected. The following week the physician phoned her at work to tell her it was cancer and that she would have to have her breast removed. She also went to another surgeon because she did not feel confident in the surgeon referred by her physician. In another scenario, a woman believed that her physician was very negative and that she had to fight for everything she got.
Undergoing tests and treatment and having the accompanying physical and psychological effects. There were major psychological and physical impacts identified by the families as a result of the tests and treatments and their side effects. Patients and family members were anxious and fearful about hospitalization, pending surgery and the anesthetic, the possibility or reality of having RT and/or CT, the potential side effects, such as pain, hair loss, and vomiting, and the possibility of seeing others at the cancer clinic. Children were afraid of the impact that treatments might have on their family. The surgery itself occurred without major problems although a few surgeries had to be delayed because of illness. Although radiation therapy was not usually distressing, many commented on the fatigue, the skin effects, and the disruption it caused to their lives. Women and families found chemotherapy particularly stressful. Families were quite explicit about the difficulty of seeing others receiving their RT and CT treatment. The women who had CT often had problems with nausea and vomiting, hair loss, and fatigue. For the women who had lumpectomy and required no CT, there were few issues identified around body image or intimacy. At times they indicated that one breast was smaller than the other, but it was not a major issue for most couples. They thought there might be some adjustment problems if they had required a mastectomy. Even for those who had mastectomy, body image concerns did not come forth as a major issue, although some did have reconstructive surgery within the year. One woman said that her husband did not want to see the mastectomy incision. Few couples commented about negative impacts
95
on their sexual relationships. Some did say that they cuddled and held hands, and one husband "was afraid she would break apart." Others commented, particularly at 2 to 3 months and especially if they were undergoing further treatments, that their "sex life was pretty well nil since the operation but that was to be expected." Most felt that they were still intimate as people.
Family Patterns Family patterns is a theme that reflects issues and problems in the functional patterns of the family because of the cancer demands. These included problems related to emotional response issues, family communication, family support behaviors, major marital discord, shifting priorities, and perceptions of loss of control. Some families had few problems or issues related to these areas because they incorporated the changes into their lives and communicated their support and caring within the family. However, others identified major concerns that are discussed next. Emotional response issues. Similar emotions were experienced by more than one family member at the same time, or the impact of one person's emotional response had major effects on other family members. Family members displayed a wide variety of emotions and were concerned for themselves and about other members' emotional responses. In addition, they were worried, anxious, scared, depressed, and angry about their emotional/behavioral reactions or lack of reaction. "The emotional a d j u s t m e n t . . , was probably the most difficult for m e . . . it was hard for me to get a positive response or reaction out of her [his wife]." Many talked about being more irritable, and it was not unusual for them to say that the kids were misbehaving. Some mentioned that they were unusually "shorter with the kids," but a young son said he did everything his parents said, and that they did not yell at him and get as angry as usual. The anxiety was understandably contagious. Shielding others from anxiety was not necessarily successful and gave conflicting messages. Children expressed their concerns at times, whereas other children were unemotional. One mother wondered if her son had blocked it from reality. A worded son said that death did not bother him, but he wondered if he should "be trying something different because it is my mother this time . . . I just blocked it out." Difficulty concentrating was
96
not unusual for family members. A few of the school-aged children displayed new problems in school, such as failing to hand in their assignments. One woman did not feel she helped her husband much because of her own emotional response in that she would either fall apart or withdraw. Another woman became depressed because she got angry at her 2-year-old daughter and finally had to "ship her off for a few days because she was scared of her response." These kinds of difficulties were not only identified in the early period but were also brought up 8 to 12 months post diagnosis, although not as frequently. At 8 months, one husband felt that his wife was still "overwhelming him with negativity." Other types of emotional responses were seen. For example, one woman was concerned because she had not gone through a "metamorphosis." She had "heard about people going through a traumatic e v e n t . . . and having a new lease on life and I don't. Like there's something missing." Another woman, on the contrary, went through a personality change and then at 8 months was "coming down to earth and that felt pretty rotten." Her husband had difficulty dealing with the changes. Family communication. Families came into the study with their usual patterns of communication, and these worked for them with varying degrees of success. Some couples/families were very satisfied with their communication, and other families indicated considerable difficulty. For some families, difficulties were identified because of a lack of communication. Talking was a prime way of informing others and supporting others. There were issues for the families in terms of telling others about the illness: who to tell or not to tell, when to tell, and how to tell. Because the woman was the first one to know about the lump, she generally told her husband about it. However, in a few cases, this was kept from the husband until clarification had been obtained about the seriousness of the situation. When a husband was not told, some did not think anything of it, whereas others found it contentious. In some cases, families wanted to keep the news, at least initially, confined to the immediate family, and this might or might not have included their parents and siblings. Couples made deliberate decisions as to how they would tell their families. This was more difficult when it involved children. Even though one
B. ANN HILTON
couple believed that they considered all aspects of the telling process in terms of their two teenagers, their actions were not always seen as positive. "Dad really blew it this time about telling me that Morn had cancer cause I had a friend over and we were in the kitchen and I was on my way to the basketball game and Dad walks by me in the kitchen and says 'oh your mother has cancer' and then walks out of the room and I just went 'whoa!' I never told you how angry I was about that, D a d d y . . . to me that was totally insensitive to say 'oh your mother has cancer,' especially when I have a friend over." One couple had to discuss what and how much to tell their mentally handicapped daughter who was 47 years of age. Families often had difficulty sharing their concerns. One husband got upset when his wife originally discussed dying. She also felt bad for upsetting him. Many of the difficulties generally developed when someone wanted to talk, but the others did not want to talk or did not see the need for it. It was the lack of congruency that was problematic. This not only happened between husband and wife but also between family members. Although couples often had different individual coping styles, this did not seem to be a problem/issue unless there was an accompanying feeling of nonsupport. Family support behaviors. In many families, members seemed to expect that the other family members would be tuned into their needs and would try to meet them or see how they could be met. However, in some families this did not occur and was a problem. A few women did not feel that their husbands were as supportive as they needed to be and when this happened, it was quite problematic because there were lingering feelings about it. Although husbands may have been more involved in the early treatment period, sometimes direct statements of continuing concern were not voiced as the year progressed. One year after the diagnosis, a couple's concerns conflicted with each other. "Once she was cured, she gets mad at me because it seems to only occupy 20% of my mind." The wife said, " N o w that I ' m getting better he doesn't want to think about it, but I don't think that's how it should be r u n . . , it should be discussed once in a while." Families often did not know how to provide effective support or did not have the time to provide
FAMILIES COPING WITH CANCER
as much as they wanted or was needed. In addition, sometimes what they were doing was not seen as particularly supportive even though intentions were well meant. An adult daughter talked about doing her crying at home because she felt that crying in front of her mother did not help. When she saw her mother she would "come in smiling . . . to cheer her up." Finding the right balance in being protective was at times an issue in these caring families. Many partners commented on the difficulty they had in trying to get their wives to rest. One husband who did not want his wife to "relapse" tried to do everything for her. He wanted her to have a good recovery, but she always scolded him because "she had to do it herself." In another situation, a patient's mother who was visiting "didn't give her space," and this was very difficult for the patient. Major marital discord. There were a few couples who had major marital problems. Initially, there may have been more harmony between the partners, but as time passed, the differences and disturbances became greater. One couple went into counseling; another couple talked about separating; another had major open discord; and yet another felt time-out was needed. One husband was drinking more, and his wife was concerned about it. Shifting priorities. Families and/or family members often shifted their priorities. These shifts and changes had an impact on the entire family. The awareness of risk factors (eg, diet, smoking, stress) and an increasing desire to improve the quality of life were major areas in which changes were noted. Some families made dramatic changes, particularly in dietary habits, which were initiated by the diagnosed women who were trying to promote wellness and decrease their personal risk of recurrence. For some families, these changes persisted at the end of a year. For others, change may have been pushed, but family members remained uncooperative. The impact of diet changes was experienced by all family members. Children were often not enthralled by increases in bran, vegetables, fish, tofu, and reductions in beef, coffee, fries, and junk food. Husbands were often supportive of the changes or went along with them. In one couple, the wife was concerned about her husband's smoking, and another family wanted the patient to quit smoking. In a few families, the women made unilateral
97
decisions (eg, planning a move to the country) that had far reaching implications for the family integrity, and they were going to implement them no matter what. " I ' v e had a second chance and I'm gonna do the best I can with my life and I really do try to include him but sometimes I can't. I'll just do whatever I have to do to suit me," Other shifts involved changes in behavior that might have been problematic. Some of the women "realized the fragility of existence" and made changes owing to it. "I've gone into a different plane, a different way of observing things, a different way of feeling about things, definitely a different sense of priorities, a different attitude to people, a loss of materialism . . . a spiritual change . . . a psychic change of some kind . . . and [husband] has to deal with them too." Her husband agreed and said the change was "far bigger than even the week after the operation." The wife said the change was hard on her, but she got to the point where she did not feel guilty. At the end of 1 year, her husband believed that she was getting these new priorities better aligned. The process of coping with the cancer experience resulted in the family making changes and altering priorities. Some families met this challenge well. Others found adjusting to the changes from their normal living pattern difficult. Initially, during the period of diagnosis with its uncertainty and waiting, some families talked about things being "on hold" and "in limbo." It was looked on favorably when life returned to normal. Loss of control. Although not stated by a large number of families, there was one group who commented on the powerlessness they felt because they were in a situation that they could hardly control. It was not having control of the cancer that frustrated and terrified the families. As two husbands put it, "Cancer is a bugger. If you don't catch it, there's nothing you can do about it," and "It's in charge of you." In addition, it was the feeling of not having control over one's role: " I have always been on top and now the roles are reversed and 1 have lost control."
Managing Other lssues Families were frequently coping with other major concerns, such as other medical problems of the patient or of other family members, work and financial concerns, and a variety of other issues that required attention. Although initially the pa-
B. ANN HILTON
98
tient's breast cancer diagnosis and treatment was usually the major concern and had the highest priority, other issues often remained. At times, these were either put on hold or confronted, but they added to the pile of things the families had to face. Other problems and issues developed as the year progressed. All of the women who were working took some time off for the surgical procedure, but the amount of time varied considerably. Many of the couples worked at stressful jobs. Many worked full time as well as being both mother and wife. Several women were rethinking their jobs although others were very happy or satisfied in their work. For most of those who had taken considerable time off, it was difficult to return to work, and some had not returned after 8 months. Some families also had financial concerns. This was not restricted to those with lower income levels. Professional couples also discussed financial concerns. Many of these concerns were related to the fact that less money was being earned during the treatment and recuperation period. However, other aspects of finances that may already have been a problem were compounded. Family members, and particularly the partners, had acute and chronic medical problems that required attention and were of concern at various points. The partners had medical problems that included strokes, heart conditions, arthritis, cancer, orthopedic problems, and clinical depression. The degree of physical limitation of the partners often influenced their abilities to provide physical support to the patient postoperatively. The health of children at home was very good. However, significant medical problems occurred in adult children living away from home, parents of the patient and partner, grandchildren, siblings, in-laws, and friends or acquaintances. When other family members required testing for suspicious symptoms, stress was elevated, particularly if cancer was a possibility. Family members often expressed concerns about others beyond their immediate family and how they were coping with the cancer concern. At times others overreacted to the news. Some people could not deal with the cancer, and the patient or the family felt rejected by them. Families were sometimes in the midst of resolving other major issues or changes when the breast cancer was diagnosed. One couple was resolving
the death of the wife's mother, which had occurred 3 months earlier. Two other families were still dealing with deaths of children within the previous 2 years. For one family, it was the death of an infant, and in another family, it was the death of an adult son. Other families were in the midst of major living changes, such as renovations, physical relocation, or permanent or temporary changes in household members. Several families talked about the overload of events that had occurred at the time of diagnosis and treatment and the fact that this overload made it much more difficult for them to cope. DISCUSSION
Initially the families' problems were related to the cancer diagnosis, treatment, and effects of coping with cancer in the family. Once the initial tests and surgery were performed and further treatment was started, waiting was not a concern. Being informed and making informed decisions were particularly relevant in the early period and often became issues again at various points in the year. Not requiring further treatment beyond the initial surgery certainly gave families fewer issues to contend with and allowed them to more quickly get back to normal. Although uncertainty was particularly increased at the time of diagnosis, it decreased later. However, it continued to remain an issue to some extent for most families, as Findings by Lewis also indicated that when cancer recurrence happened in one family, the family's uncertainty level went well beyond their initial level, and it continued to remain high (personal communication, 1989). Issues regarding the functional patterns of the family were evident throughout the year. However, communication problems were more predominant initially. Issues with disruption of plans and being unable to plan were identified, especially at 2 to 3 months when RT and CT were performed. As expected, when there were problems in marital/family dynamics, there were frequently concurrent problems with re-allocation of household chores, disrupted plans, and issues around shifting priorities. Generally, themes shown in the current study were identified within the various classifications of previous studies. 19'27'30"33-36'44'45'49"52 The diagnosis of cancer presented many problems, issues,
FAMILIES COPING WITH CANCER
99
and challenges for families to manage within the context of their daily lives. The nature and extent of these problems and the degree of impact presented by each were influenced by many factors. The families' ways of managing these problems were also influenced. The findings of this study have shown that it is the responsibility of nurses and health professionals to assess cancer's impact not only on the patient but also on the family as a unit and on the individual family members. The findings indicate which families are more at risk for problems, issues, or challenges. Efforts should be concentrated on those families. Although family members may perceive their own family situations similarly and may use similar coping methods, divergent views and coping styles are evident. Nurses need to be aware that these styles generally become more problematic when a sense of being supportive or being supported is absent. It is therefore essential to assess the supportive nature of the family, and this may not necessarily be reflected in open discussion of their concems. Families who talk little may not find that problematic. Although the particularly troublesome period is the time leading up to and during diagnosis and
treatment, difficulties continue to arise over the first year for many families. This illustrates the need for information and counseling and the need for the family to know where they can get assistance at any point. During the early period, which often involves considerable waiting, uncertainty, and stress, the nurse in the surgeon's office plays a vital role. Because hospitalization is often short for these women, nurses must quickly assess and intervene as needed. Further teaching to assist families in coping better at home and in knowing what they should do and should not do would be helpful. It is essential that the family perceive health professionals as caring. Although many problems that the families face are difficult and probably cannot be minimized, there are other issues and concerns that can be prevented or alleviated. Nurses have many of the skills needed to assist in minimizing the family's distress. ACKNOWLEDGMENTS The author wants to express appreciation to the coprincipal investigator, Dr. Patricia Rebbeck, to the other surgeons and office staff for their involvement in recruitment, to the members of the research team, and to the families who participated in the study.
REFERENCES 1. Felton BJ, Revenson TA: Coping with chronic illness: A study of illness controllability and the influence of coping strategies on psychological adjustment. J Consult Clin Psychol 52: 343-353, 1984 2. Lichtmann RR, Taylor SE, Wood JV, et al: Relations with children after breast cancer: The mother-daughter relationship at risk. J Psychosoc Oncol 2:1-19, 1984 3. Hamburg DA: Coping behavior in life-threatening circumstances. Psychother Psychosom 23:13-25, 1974 4. Lewis FM, Bloom JR: Psychosocial adjustment of breast cancer: A review of selected literature. Int J Psychiatry Med 9:1-17, 1979 5. Neuhring EM, Barr WE: Mastectomy: Impact on patients and families. Health Soc Work 5:51-58, 1980 6. Weisman, A, Worden J: Existential plight in cancer: Significance of the first 100 days. Int J Psychiatry Med 7:1-15, 1976 7. Caplan G: Support-Systems and Community Mental Health. New York, NY, Behavioral Publications, 1974 8. Cobb S: Social support as a moderator of life stress. Psychosom Med 38:300-314, 1976 9. Croog SH, Lipson A, Levine S: Help patterns in severe illness. The roles of kin network, nonfamily resources, and institutions. J Marriage Fam 34:32-41, 1972 10. Kaplan BH, Cassel JC: Social support and health. Med Care 15:47-57, 1977
11. Northouse LL: The impact of cancer on the family: An overview. Int J Psychiatry Med 14:215-244, 1984 12. Parsons JA: A descriptive study of intermediate stage terminally ill cancer patients at home. Nurs Digest 5:1-26, 1977 13. Vachon ML: A comparison of the impact of breast cancer and bereavement: Personality, social support, and adaptation, in Hobfoll S (ed): Stress, Social Support, and Women. New York, NY, Hemisphere Publishing, 1986, pp 187-204 14. Weiss R: The provision of social relations, in Rubin Z (ed): Doing Unto Others. Englewood Cliffs, NJ, Prentice Hall, 1974, pp 17-26 15. Wellisch DK: The psychologic impact of breast cancer on relationships. Semin Oncol Nuts 1:195-199, 1985 16. Woods NF, Earp JA: Women with cured breast cancer. Nurs Res 27:279-285, 1978 17. Wortman CB: Social support and the cancer patient. Cancer 53:2339-2360, 1983 18. Anthony EJ: The impact of mental and physical illness on family life. Am J Psychiatry 127:56-64, 1970 19. Lewis FM, Ellison ES, Woods NF: The impact of breast cancer on the family. Semin Oncol Nurs 1:206-213, 1985 20. Olsen E: The impact of serious illness on the family system. Postgrad Med J 47:169-174, 1970 21. Parkes CM: The emotional impact of cancer on patients and their families. J Laryngol Otol 89:1271-1279, 1975
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22. Strauss A: Chronic Illness and the Quality of Life. St. Louis, MO, Mosby, 1975 23. Maguire P: The repercussions of mastectomy on the family. Int J Fam Psychiatry 1:485-503, 1981 24. Lichtman RR: Close relationships after breast cancer. Dissertation Abstracts International 43:3411B, 1983 25. Northouse LL, Swain MA: Adjustment of patients and husbands to the initial impact of breast cancer. Nurs Res 36: 221-225, 1987 26. Northouse LL: Social support in patients' and husbands' adjustment to breast cancer. Nurs Res 37:91-95, 1988 27. Oberst M, James RH: Going home: Patient and spouse adjustment following cancer surgery. Top Clin Nurs 7:46-57, 1985 28. Grandstaff NW: The impact of breast cancer on the family, in Vaeth JM (ed): Breast Cancer (Frontiers in Radiation Therapy Oncology Series 11). Basel, Switzerland, Karger, 1976, pp 146-156 29. Jamison KR, Wellisch DK, Pasnau RO: Psychosocial aspects of mastectomy: I. The woman's perspective. Am J Psychiatry 135:432-436, 1978 30. Wellisch DK, Jamison KR, Pasnau RO: Psychosocial aspects of mastectomy: II. The man's perspective. Am J Psychiatry 135:543-546, 1978 31. Baider L, De-Nour KA: Couples' reactions and adjustment to mastectomy: A preliminary report. Int J Psychiatry Med 14:265-276, 1984 32. Baider L, Rizel S, De-Nour AK: Comparison of couples' adjustment to lumpectomy and mastectomy. Gen Hosp Psychiatry 8:251-257, 1986 33. Lewis FM, Woods NF, Ellison ES: The mother's spouse's experience with chronic illness in the mother: Breast cancer, diabetes, and fibrocystic breast disease. Proceedings of the International Family Nursing Conference, Calgary, Alberta, 1988 34. Gotay CC: The experience of cancer during early and advanced stages: The views of patients and their mates. Soc Sci Med 18:605-613, 1984 35. Gotay CC: Why me? Attributions and adjustment by cancer patients and their mates at two stages in the disease process. Soc Sci Med 20:825-831, 1985 36. Lewis FM, Woods NF, Hough EE, et al: Family functioning with chronic illness in the mother: The spouse's perspective. Soc Sci Med 29:1261-1269, 1989 37. Loveys BJ, Klaich K: Breast cancer: Demands of illness. Oncol Nurs Forum 18:75-80, 1991
B. ANN HILTON
38. Packard NJ, Haberman MR, Woods NF, et al: Demands of illness among chronically ill women. West J Nurs Res 13: 434-457, 1991 39. Green C: Working with the family with cancer: A nursing perspective. Nurs Leadership 3(4):16-22, 1980 40. Litman TJ, Venters M: Research on health care and the family: A methodological overview. Soc Sci Med 18A:379385, 1979 41. Giacquinta B: Helping families face the crisis of cancer. Am J Nurs 77:1585-1588, 1977 42. Marino LB, Kooser J: The psychosocial care of cancer clients and their families, in Marino LB (ed): Cancer Nursing. St. Louis, MO, Mosby, 1981, pp 53-66 43. Wellisch DK, Mosher MB, VanScoy C: Management of family emotional stress: Family group therapy in a private oncology practice. Int J Group Psychother 28:225-231, 1978 44. Green C: Family reactions to the diagnosis and treatment of cancer, in Zilm G, Hilton A, Richmond R (eds): Nursing Research: A Base for Practice, Service, and Education. Vancouver, British Columbia, University of British Columbia, 1982, pp 51-60 45. Stetz KM, Lewis FM, Primomo J: Family coping strategies and chronic illness in the mother. Faro Relations 35:515522, 1986 46. Lewis FM, Zahlis EH, Issel LM: The couple's experience with early stage breast cancer: A qualitative analysis. Proceedings of the Oncology Nursing Society's 14th Annual Congress. Oncol Nurs Forum 16:166, 1989 (suppl) 47. Strauss A, Corbin J: Basics of Qualitative Research: Grounded Theory Procedures and Techniques. Newbury Park, CA, Sage, 1990 48. Hilton, BA: Coping with the uncertainties of breast cancer: Appraisal and coping strategies. (No. 87-00): 205, 1987. University Microfilms International, Ann Arbor, MI. 49. Zahlis EH, Shands ME: Breast cancer: Demands of illness on the patient's partner. J Psychosoc Oncol 9:75-93, 1990 50. Lewis FM: The impact of cancer on the family: A critical analysis of the research literature. Patient Education and Counseling 8:269-289, 1986 51. Sabo D, Brown J, Smith C: The male role and mastectomy: Support groups and men's adjustment. J Psychosoc Oncol 4:19-31, 1986 52. Chekryn J: Cancer recurrence: Personal meaning, communication, and marital adjustment. Cancer Nurs 7:491-498, 1984
ANCER poses enormous physical and psychological challenges from the moment it is first suspected. Learning to live with cancer is no easy task. Learning to live with someone else's cancer may be even more difficult. Studies suggest that the ways in which people assess such situations as cancer may be related to the efficacy of their psychosocial adjustment to the disease. 1,2 For the most part, studies of cancer patients have focused on patients' adaptation and have overlooked the concurrent adaptation required of families3-6 despite the increasing awareness of the importance of the social support network in which the diagnosed member belongs 7-~7 and despite the recognition that it is not only the isolated patient but the family that experiences the illness. 4'~s'22 Studies have focused on individual member adjustment and the individual's perspective of family adjustment. 23-3s There is an increasing recognition of the family as a critical focus for health c a r e 39-40 as well as an increasing quantity of literature addressing family-focused interventions. However, there is a scarcity of research that examines the adaptation of the family from the family's perspective to the cancer experience. 41-45 The purpose of this article is to present the analysis of one component of a larger grounded theory study of family adaptation to breast cancer from the time of diagnosis to 12 months later. It will present the themes shown in family interviews for the issues, problems, and challenges that partnered families faced during the initial year. Although not all of the partnered families who enrolled have completed the study, and not all transcripts have been analyzed to date, this analysis represents 12
C
From the School of Nursing, University of British Columbia, Vancouver, BC Canada. B. Ann Hilton, RN, PhD: Associate Professor, School of Nursing, University of British Columbia. This research was supported by the British Columbia Health Research Foundation. Address reprint requests to B. Ann Hilton, RN, PhD, Associate Professor, School of Nursing, University of British Columbia, 1"206-2211 Wesbrook Mall, Vancouver, BC Canada V6T 2B5. Copyright 9 1993 by W.B. Saunders Company 0749-2081193/0902-00(M$5.00/0
88
families (Table 1) for all five interview points (time of diagnosis, 2 to 3 weeks, 2 to 3 months, 7 to 8 months, and 12 months after definitive surgery/diagnosis) and an additional 23 partnered families in which three or four interviews have each been analyzed. METHODS
Forty-nine partnered and 13 nonpartnered women were enrolled in the study that represented various family structures. Families were recruited into the study through surgeons. Inclusion criteria were that the partner/mother was newly diagnosed with breast cancer, awaiting treatment, and had no prior cancer diagnosis. Families were excluded when cancer had been diagnosed beyond the axillary lymph nodes, or they had other acute disease or chronic psychopathology. The current sample consisted of 35 families. The mean age of the women was 53 years and the mean age of partners was 55 years with a range of 27 to 76 years. Nine couples were between 25 and 44 years of age, and 14 couples were older than 54 years. The educational background of the couples widely ranged from 23 of the women and 12 of the men with high school education or less to 8 women and 10 men having college preparation. About half the number of families included partners who both worked. The other women were either full-time housewives (n = 8), retired (n = 7), or unemployed (n = 1), whereas 13 of the partners were retired. One third of the families each had family incomes less than $40,000, between $40,000 to $60,000, and above $60,000. Of the 35 families, 12 had children living at home ranging in age from 2 to 23 years with two other families with mentally handicapped adult children at home. Five families had one child, and the remainder had two children living at home. Nine families had children under 12 years of age, and 5 families had teenage or older children living at home, with some having both young and older children. At least 14 families had adult children not living at home. The sample reflected several cultural groups. Twenty-two of the women had lumpectomy Seminars in Oncology Nursing, Vol 9, No 2 (May), 1993: pp 88-100
FAMILIES COPING WITH CANCER
Table 1. Information Regarding Families Analyzed Family A: Family B: Family C: Family D: Family E: Family F: Family G: Family H: Family I: Family J: Family K: Family L:
Mastectomy, Reconstruction, (ages 51/45 years) Lumpectomy, nodes positive, RT, and tarnoxifen (ages 63/67 years) Lurnpectomy, nodes negative, RT, (ages 46/47 years) Lumpectorny, Recurrence at 7 months (ages 46/51 years and children ages 20/17 years) Lumpectomy, nodes negative, RT (ages 64/68 years and adult children) Lumpectorny (ages 43/41 ) Lurnpectorny, nodes negative, RT, CT (ages 33/32 years and child ages 3 years) Lurnpectomy, nodes negative, RT (ages 67/69 years and adult children) Lumpectomy, nodes negative, RT (ages 63/70 years and adult children) Mastectorny, nodes negative, (ages 43/44 years and children 11/14 years) Mastectorny, (ages 41/45 years and child ages 10 years) Lumpectorny, nodes negative, RT (ages 53/55 years)
with all but one of the remaining 12 having mastectomy. One woman had radiation (RT) and chemotherapy (CT) before her surgery. Of the 30 women who had axillary node dissection, 21 had negative nodes, but 9 had cancer found in at least one of the nodes. Further treatment consisted of no treatment beyond the surgery (n = 8), RT with or without tamoxifen (n = 16), tamoxifen alone (n = 1), or CT with or without RT (n = 10). Although several women identified more suspicious lumps, only one woman developed breast cancer recurrence in the first year. Family interviews were conducted at each family's residence with the same interviewer doing all interviews for each family to provide continuity. A focused interview was conducted using trigger questions from The Problem Centered Family Coping Interview and the Marital Dyad Interview guides 46 together with open-ended questions to show the family's experience of coping with the breast cancer. Tapes were transcribed, and analyses were performed to identify substantive themes in the family coping process. Concurrent analyses showed themes for further exploration. Data were subjected to content analysis and constant comparative analyses as outlined by Glaser and Strauss. 47 Themes were identified around issues, problems, and challenges and their impact on family members, the ways in which the families coped with these issues and challenges, and the outcomes of that coping. This article will be limited to the data
89
pertaining to the issues, problems, and challenges reported by the families. Throughout the process, a second coder verified the fit. Discrepancies were resolved by revising the definition, by recoding the unit of analysis, or by identifying a new property or category. The further conceptual analysis that describes the family process of coping with these problems and challenges is beyond the scope of this article. FINDINGS
There were basically three themes to the issues, problems, and challenges: (1) getting the cancer taken care of, (2) family patterns, and (3) managing other issues. Each of these themes had categories within them. The categories of problems, issues, and the frequency of occurrence of these problems for each family at each interview point are shown in Figures 1, 2, 3, 4, and 5. These figures illustrate how the frequency of the problems and challenges shifted over time. The themes and several of the exemplary categories will be discussed.
Taking Care of the Cancer The theme of Taking Care of the Cancer referred to issues and problems confronted by the family experiencing the diagnosis and treatment of cancer and living with the uncertainties. The categories within this theme were uncertainty; waiting for appointments, tests, and treatments; hearing, facing, and living with the news; feeling informed; making treatment decisions; concerns about the patients' health care and its provisions; and undergoing tests, surgery, and treatment, and coping with the physical and accompanying psychological effects caused by these procedures. Uncertainty. "The worst part was the uncertainty!" Although there was always some element of uncertainty for these families over the course of the first year after cancer diagnosis, by far the greatest uncertainty was during the initial diagnostic period. At that time the families did not know whether the suspicious lump/abnormal mammogram meant cancer; and if it did, they did not know the extent of the illness nor its treatment implications. In addition to the uncertainty related to actual test procedures and what the families would be required to do, there were also concerns about the reliability of these procedures and whether they would detect something if it was present, whether
90
B. A N N H I L T O N
A ~
c
Uncertainty
7
8
2
Waiting for appointments, results and treatment
1
2
Hearing, facing and living with the diagnosis of cancer
5
i3
III
Not feeling informed
2
Making treatment decisions
1
Concerns about their health care and its provision
1
Tests, treatment, & accompanying physical & psychological effects
3
HIHBHm m B B B I I~ ~m~ml 1
1 1
1
1 1 1
1
1
1
1
2
1
2
2
1
1
Family communication patterns
1
1
2
1 1
1
1
Major marital discord
6
3
2
2
2
1
1
2
2
1
1
1
2
1
1
1
1
28
8 1
3
1
1
2
1
2 2 1
Loss of control
1
1
Financial concerns
1
--~ Health concerns of the family
1 1 1
Concerns related to friends
1
25
7
2
1
1 1 19
12
1
1
1
15
8
1
Work issues
5
3
1
Shifting priorities
Managing overload .| Total
1
2
1
.=~ Making household arrangements E Disrupted plans
==
1
1
Emotional response issues
1
1
43
5
2
Family support behaviors .=
Total
Frequency of Responses in Each Family at Diagnosis
Categories of Problems & Issues
1
1
1
1
1
1
9
24
13
15
7
the surgery "got it all," or whether the other treatments would provide a cure. The uncertainty lessened in degree as some questions became clear, but uncertainty regarding the future remained a major concern. For some of the families, the needed treatment and its implications hung over their heads even before the diagnosis. Many of the patients were referred to the cancer clinic for a recommendation for need for further treatment, particularly when there was any question in the surgeon's mind. Although the majority of families believed that the treatments were effective, this did not necessarily mean that they were confident that cancer would no longer be a threat to them. The treatment may have helped their cancer situations but whether it provided a cure was another matter. They also wondered about the reason for symptoms that they could not explain. Normally when people get aches or pains, they explain them with reasonably
1
1
3
1
3
1
7 3 1
21
12
14
6
3 I 16,9 I
R g 1.
The frequency of 0c-
currence of problems and issues for each femiiy at diagnosis.
neutral connotations. However, for these patients, the origin of aches, pains, and unusual symptoms was frightening because they knew cancer was not outside the realm of possibility. Their uncertain state was also heightened by reminders and by the occurrence of new or unusual symptoms, particulaxly when further suspicious lumps were found. This happened to at least 11 women, and several required further tests. As time for check-ups approached, the concern that new cancers might be detected by their doctors generated stress particularly because they recognized that they were "more of a risk factor now." Although they would want cancer to be found if it was present, concern was expressed about the fallibility of diagnostic tests. Several families were uncertain about the causes of the cancer, and they posed various possibilities. For example, they wondered if making dietary changes (eg, decreasing fat and caffeine) would make a difference in chances of recurrence.
FAMILIES COPING WITH CANCER
91
Frequency of Responses in Each Family at 2 to 3 Weeks After Surgery/Diagnosis
Categories of Problems and Issues A Urceaalnfy
B
1
C
O
3
E
F
G
Hr,
J
K
4
3
2
2
4
2
Waiting for appointments, results and treatment (,3 Hearing, facing and living with the diagnosis of cancel r
2
1 2
Not feeling informed
1
2
2
3
1
1
1
Making treatment decisions
1
5
5
2
1
2
2
5
1
3
4
1
Family communication patterns
2
Family support behaviors
1
1
27
15
1
7'
1
3
1
1
6
4 i 1
1
8
1
1
2
1
1
1
1
t
1
1
2
1
3
1
Major marital discord
1
1
i Emotional response issues
L 4
1
4
1
Concerns about their health care and its provision Tests, treatment & accompanying physical & psychological effects
Total
9
'2
47 7 8 3
1
1
2
o. Making household arrangements
1
Disrupted plans
1
1
2 2
Shifting priorities
1
1 0
Loss of control Work issues
1
1
Financial concerns
0
1
--~ Health concerns of the family
Fig 2. The frequency of occurrence of problems and issues for each family at 2 t o 3 weeks after surgery/diagnosis.
Concerns related to friends
1
Managing overload i Total
1
Many families wondered about whether the patient Would live or die and discussed concerns about dying. Some families were very forthright in stating this concern, "You have a tendency to think the w o r s t . . . I had myself almost remarried to another woman and was concerned about the children and would she love the children as she [wife] does." In another family, the woman was disturbed because she felt that her family was already considering her " g o n e . " " I t disturbs me almost as if, well, there she goes, she's gone. I am very much here and very much willing to give it my best."
Hearing, facing, and living with the news (of cancer, of nodal involvement, of recurrence). Finding out that the lump was cancerous was traumatic and generally a surprise. Several families received conflicting results and were " o n a roller
10
1
1
1
1
1
10
8
5 4
1 10
1
1
15
6
19
15
17
1
1
13
18
4 8
149
coaster ride" when one test showed the lump as benign and/or their surgeon was confident of a negative result, and another test indicated cancer. How the news of the cancer was communicated was at times an issue. It usually took a week after the surgery before the full pathology report was available. Therefore, for the patient/family to be told the news in the surgeon's office meant that scheduling an appointment was necessary. To circumvent this difficulty and to decrease the uncertainty time for these families, some surgeons called the patient at home or at work and told them over the phone. However, receiving such distressing information over the phone was sometimes problematic, and much depended on the communication style of the surgeon and the availability of support for the patient. What cancer meant to the family often influ-
92
B. A N N HILTON
Frequency of Responses in Each Family at 2 to 3 Months After Surgery/Diagnosis
Categories of Problems & Issues A
B
C
D
E
F
G
1
3
4
3
H
TOTAL
I
J
K
L
1
2
3
2
i
Unceaalnty
2
Waiting for appointments, results and treatment
1 il
Heating, facing and living with the diegno~ of cancer "6
Not feeling informed
o
Making treatment decisions
1
3
1
2
1
1
1 1
1 2
Emotional response issues
9 1
Family communication patterns Family support behaviors Ma~or marital discord ~L Making household arrangements Disrupted plans
2
1
8
nmu,=u
nnnmmmu
InUmml llllllll IIlIll iIIiiml Immml
6
1
1
4
,1 1
3
2
49
2
6
1
3
1
4
1
1
1
1
5
2
iniil
Shifting priorities
6
1
1
1
1
5
Loss of control , Work issues
0
1
1
1
1
Financial concerns Health concerns of the family
1
1
11
Concerns related to friends
1
1
1
Managing overload Total
10
1
Ccmcem.,s about their health care and its provision Tests, treatment & accompanying physical & psychological effects
21
5
17
1
1
22
1
1
1
12
4
1
1 t
16
8
enced pessimism/optimism about their situation. Although most families knew of others who had cancer, one family found it problematic that they did not know anyone. The families discussed knowing others who had cancer or who had died of cancer and the impact of this on them. Although there were some positive perceptions of these experiences, many were negative, and some were especially disturbing. For many families, this was their first experience in coping with anything serious, and it shook the myth of family invincibility. It may also have been the first time that their wife/ mother had been ill, requiring them to alter their image of her as strong and healthy. Having to take on the "sick role" was also difficult for the woman herself. Patients and families were often being reminded of cancer. Although they may have wanted to for-
1
15
16
15
6 3
1
1
10 6
1
1
9
21
5
9
147
Fig 3. The frequency of occurrence of proMems and issues for each f a m i l y at 2 t o 3 m o n t h s after surgery/diagnosis.
get it, they usually could not "avoid it or ignore it," particularly when treatments were on their agenda for the day. Being constantly reminded was particularly evident for patients who had uncomfortable physical symptoms. However, other reminders for the families were TV, friends, and magazine articles. Some wanted to get on with their lives but found the intrusion of such events quite bothersome. Other people talking about cancer and relating negative stories may have been irritating. A few families found it difficult to participate in this study in which they talked about their cancer experience, and two families withdrew because it was too difficult. Feeling informed. Families often said that they knew very little about cancer and "just the word cancer was enough to scare" them. Lack of general knowledge and lack of specific facts and in-
FAMILIES COPING WITH CANCER
93
Frequency of Responses in Each Family at 7 to 8 Months After Surgery/Diagnosis
Categories of Problems and issues
TOTAL
i
iii
A
B
2
2
C
D
E
F
5
4
2
G
H
I
Ij
K
L
i
Uncertainty ' Waiting for appointments, results and treatment
1
2
1
Hearing, facing and living with the diagnosis of cancer
1
Not feeling informed
1
0=
' Making treatment decisions
1
Concerns about their health I care and its provision
1
! Tests, treatment & accompanying physical & psychological effects
3
2
3
21
1
2
2
4
;1
1
1
2
1
2
14 6
2
1
4
1 3
2
2 7
2
2
2
3
24
2
4
1
6
i
~. -r
Emotional response issues
1
1
Family communication patterns
1
1
1
1
1
Family support behaviors
1
-~
2
3
Major marital discord
1
.~ ~
1
2
Making household arrangements
1
"s
1
2
oJ
Disrupted plans
1
z
Shifting priorities
1
I
1
2
1
1
1
1
1
Loss of control
5
I
Work issues
1
Financial concerns
_=
1
Health concerns of the family
2
1
2
1
1
2
2
1
5 2
1
1
12
J=
O
Fig 4. The frequency of occurrence of problems and issues for each family st 7 to 8 months after surgery/diagnosis.
Concerns related to friends Managing overload Total
formation regarding their own situation was problematic. Most families wanted to be informed regarding their cancer situation, what they might expect to happen in the hospital and from the treatments, what the prognosis was, and how they could prevent further cancer. Although a lack of knowledge or understanding was a problem for some families, for other families there seemed to be almost a preference for minimal information. " I ' v e done a bit of r e a d i n g . . , don't tell me what you're gonna do, just do it!" Information was obtained from health care professionals, from books, from the media, from recalling their own experiences, and from others. Problems were identified with each of these sources. For example, some families indicated being unable to tell where they fit in because the cases cited in books were more serious. The cur-
10
1
1
1
10
9
17
26
1
1
1
1
9
0
16
6
2
g
1
1
7
20
3
125
rent controversy about reconstruction using implants was difficult for one family because they felt they were getting conflicting information with what they heard on TV. Comparing their treatment plan with that of others generated confusion for some when unexplained differences were apparent. Several families did not know where to get information or what to ask, and some felt silly or reticent to ask. Some felt overwhelmed and were not able to think clearly when talking with the doctor. Other types of identified problems were a lack of clarity of the technical information obtained, discrepant information, inability to interpret the information, concerns about the accuracy or the negativity of the information, poor timing, and the fact that reading raised other unwanted concerns that only added to their distress.
94
B. ANN HILTON
Frequency of Responses in Each Family 1 Year After Surgery/Diagnosis
Categories of Problems and IssueS A , Uncertainty
B
1
C
D
E
F
3
4
2
2
2
2
I
I
2
I
G
H
I
J
2
1
1
TOTAL K
L 16
Waiting for appointments, , results and treatment oc
Hearing, facing and living with the .diagnOsis of cancer 1
"6 Not feeling informed oa
I
Making treatment decisions Concerns about their health care and its provision
I I
2
1
5
3
4
2
10
Tests, treatment & accompanying physical & psychological effects
1
3 1
Emotional response issues
1
Family communication patterns
1
1
1
1
Major marital discord
9~
Making household arrangements
u.
Dksruptedplans
1
9~
2
z
2
1
1
3
1
4
1 1
1
1
I
1
I
2
1
i'
t
i
1
1
2
Corcems related to friends
Total
4 f
1 1
Financial concerns
Managing overload
5
1
Loss of control
Health conc~.s of the family
1
1
1
1
Shifting priorities
Work issues
,1
16
1
Family support behaviors ~.
3
~2
7
7
i
10
2
2
2
1
2
1 1
15
1
20
5
Making treatment decisions. Families were very involved in making treatment decisions. For some, making these decisions was not a problem, but for others it was a challenge that required them to be knowledgeable about options and confident and concordant regarding the selected option. Decision making was particularly difficult when the family had to wrestle with differing opinions from their physicians and/or among themselves. In addition to the importance of the decision was the stress when making the decision. One patient stated that she normally did not fall apart when making decisions, but this time she fell apart dealing with simple problems. Concerns about their health care and its provision. Families, and particularly patients, interacted with many health professionals. Although many were satisfied with their care, their experi-
3
1 13
13
8
,5
4
4
0
10
103
Fig 5. The frequency o f occurrence of problems end issues for each family a t 1 year after surgery/diagnosis.
ences in the health care settings, and their interactions with health care workers, others identified problems in these areas. Comments were made about attitudes and competence of health care workers. Some staff did not show caring attitudes and/or did not have the skills to perform the needed care. Overhearing doctors and others discussing them was troublesome to the patients. Other problems included feeling that they were discharged too soon, not being able to communicate well with health workers (with only a few difficulties being language-based), and receiving contradictory directions. Comments were also made about understaffing, inability to get a semiprivate room, lack of support groups, machine breakdowns, and disturbances from other patients and visitors. Obtaining a diagnosis was a major challenge for some families when they were sure that something
FAMILIES COPING WITH CANCER
was wrong. A 27-year-old woman who noticed a lump in her breast got her physician to order a mammogram, which proved negative. When the lump got bigger, she demanded action. When attempts were made to finally remove it, the lump was larger than expected and could not be totally resected. The following week the physician phoned her at work to tell her it was cancer and that she would have to have her breast removed. She also went to another surgeon because she did not feel confident in the surgeon referred by her physician. In another scenario, a woman believed that her physician was very negative and that she had to fight for everything she got.
Undergoing tests and treatment and having the accompanying physical and psychological effects. There were major psychological and physical impacts identified by the families as a result of the tests and treatments and their side effects. Patients and family members were anxious and fearful about hospitalization, pending surgery and the anesthetic, the possibility or reality of having RT and/or CT, the potential side effects, such as pain, hair loss, and vomiting, and the possibility of seeing others at the cancer clinic. Children were afraid of the impact that treatments might have on their family. The surgery itself occurred without major problems although a few surgeries had to be delayed because of illness. Although radiation therapy was not usually distressing, many commented on the fatigue, the skin effects, and the disruption it caused to their lives. Women and families found chemotherapy particularly stressful. Families were quite explicit about the difficulty of seeing others receiving their RT and CT treatment. The women who had CT often had problems with nausea and vomiting, hair loss, and fatigue. For the women who had lumpectomy and required no CT, there were few issues identified around body image or intimacy. At times they indicated that one breast was smaller than the other, but it was not a major issue for most couples. They thought there might be some adjustment problems if they had required a mastectomy. Even for those who had mastectomy, body image concerns did not come forth as a major issue, although some did have reconstructive surgery within the year. One woman said that her husband did not want to see the mastectomy incision. Few couples commented about negative impacts
95
on their sexual relationships. Some did say that they cuddled and held hands, and one husband "was afraid she would break apart." Others commented, particularly at 2 to 3 months and especially if they were undergoing further treatments, that their "sex life was pretty well nil since the operation but that was to be expected." Most felt that they were still intimate as people.
Family Patterns Family patterns is a theme that reflects issues and problems in the functional patterns of the family because of the cancer demands. These included problems related to emotional response issues, family communication, family support behaviors, major marital discord, shifting priorities, and perceptions of loss of control. Some families had few problems or issues related to these areas because they incorporated the changes into their lives and communicated their support and caring within the family. However, others identified major concerns that are discussed next. Emotional response issues. Similar emotions were experienced by more than one family member at the same time, or the impact of one person's emotional response had major effects on other family members. Family members displayed a wide variety of emotions and were concerned for themselves and about other members' emotional responses. In addition, they were worried, anxious, scared, depressed, and angry about their emotional/behavioral reactions or lack of reaction. "The emotional a d j u s t m e n t . . , was probably the most difficult for m e . . . it was hard for me to get a positive response or reaction out of her [his wife]." Many talked about being more irritable, and it was not unusual for them to say that the kids were misbehaving. Some mentioned that they were unusually "shorter with the kids," but a young son said he did everything his parents said, and that they did not yell at him and get as angry as usual. The anxiety was understandably contagious. Shielding others from anxiety was not necessarily successful and gave conflicting messages. Children expressed their concerns at times, whereas other children were unemotional. One mother wondered if her son had blocked it from reality. A worded son said that death did not bother him, but he wondered if he should "be trying something different because it is my mother this time . . . I just blocked it out." Difficulty concentrating was
96
not unusual for family members. A few of the school-aged children displayed new problems in school, such as failing to hand in their assignments. One woman did not feel she helped her husband much because of her own emotional response in that she would either fall apart or withdraw. Another woman became depressed because she got angry at her 2-year-old daughter and finally had to "ship her off for a few days because she was scared of her response." These kinds of difficulties were not only identified in the early period but were also brought up 8 to 12 months post diagnosis, although not as frequently. At 8 months, one husband felt that his wife was still "overwhelming him with negativity." Other types of emotional responses were seen. For example, one woman was concerned because she had not gone through a "metamorphosis." She had "heard about people going through a traumatic e v e n t . . . and having a new lease on life and I don't. Like there's something missing." Another woman, on the contrary, went through a personality change and then at 8 months was "coming down to earth and that felt pretty rotten." Her husband had difficulty dealing with the changes. Family communication. Families came into the study with their usual patterns of communication, and these worked for them with varying degrees of success. Some couples/families were very satisfied with their communication, and other families indicated considerable difficulty. For some families, difficulties were identified because of a lack of communication. Talking was a prime way of informing others and supporting others. There were issues for the families in terms of telling others about the illness: who to tell or not to tell, when to tell, and how to tell. Because the woman was the first one to know about the lump, she generally told her husband about it. However, in a few cases, this was kept from the husband until clarification had been obtained about the seriousness of the situation. When a husband was not told, some did not think anything of it, whereas others found it contentious. In some cases, families wanted to keep the news, at least initially, confined to the immediate family, and this might or might not have included their parents and siblings. Couples made deliberate decisions as to how they would tell their families. This was more difficult when it involved children. Even though one
B. ANN HILTON
couple believed that they considered all aspects of the telling process in terms of their two teenagers, their actions were not always seen as positive. "Dad really blew it this time about telling me that Morn had cancer cause I had a friend over and we were in the kitchen and I was on my way to the basketball game and Dad walks by me in the kitchen and says 'oh your mother has cancer' and then walks out of the room and I just went 'whoa!' I never told you how angry I was about that, D a d d y . . . to me that was totally insensitive to say 'oh your mother has cancer,' especially when I have a friend over." One couple had to discuss what and how much to tell their mentally handicapped daughter who was 47 years of age. Families often had difficulty sharing their concerns. One husband got upset when his wife originally discussed dying. She also felt bad for upsetting him. Many of the difficulties generally developed when someone wanted to talk, but the others did not want to talk or did not see the need for it. It was the lack of congruency that was problematic. This not only happened between husband and wife but also between family members. Although couples often had different individual coping styles, this did not seem to be a problem/issue unless there was an accompanying feeling of nonsupport. Family support behaviors. In many families, members seemed to expect that the other family members would be tuned into their needs and would try to meet them or see how they could be met. However, in some families this did not occur and was a problem. A few women did not feel that their husbands were as supportive as they needed to be and when this happened, it was quite problematic because there were lingering feelings about it. Although husbands may have been more involved in the early treatment period, sometimes direct statements of continuing concern were not voiced as the year progressed. One year after the diagnosis, a couple's concerns conflicted with each other. "Once she was cured, she gets mad at me because it seems to only occupy 20% of my mind." The wife said, " N o w that I ' m getting better he doesn't want to think about it, but I don't think that's how it should be r u n . . , it should be discussed once in a while." Families often did not know how to provide effective support or did not have the time to provide
FAMILIES COPING WITH CANCER
as much as they wanted or was needed. In addition, sometimes what they were doing was not seen as particularly supportive even though intentions were well meant. An adult daughter talked about doing her crying at home because she felt that crying in front of her mother did not help. When she saw her mother she would "come in smiling . . . to cheer her up." Finding the right balance in being protective was at times an issue in these caring families. Many partners commented on the difficulty they had in trying to get their wives to rest. One husband who did not want his wife to "relapse" tried to do everything for her. He wanted her to have a good recovery, but she always scolded him because "she had to do it herself." In another situation, a patient's mother who was visiting "didn't give her space," and this was very difficult for the patient. Major marital discord. There were a few couples who had major marital problems. Initially, there may have been more harmony between the partners, but as time passed, the differences and disturbances became greater. One couple went into counseling; another couple talked about separating; another had major open discord; and yet another felt time-out was needed. One husband was drinking more, and his wife was concerned about it. Shifting priorities. Families and/or family members often shifted their priorities. These shifts and changes had an impact on the entire family. The awareness of risk factors (eg, diet, smoking, stress) and an increasing desire to improve the quality of life were major areas in which changes were noted. Some families made dramatic changes, particularly in dietary habits, which were initiated by the diagnosed women who were trying to promote wellness and decrease their personal risk of recurrence. For some families, these changes persisted at the end of a year. For others, change may have been pushed, but family members remained uncooperative. The impact of diet changes was experienced by all family members. Children were often not enthralled by increases in bran, vegetables, fish, tofu, and reductions in beef, coffee, fries, and junk food. Husbands were often supportive of the changes or went along with them. In one couple, the wife was concerned about her husband's smoking, and another family wanted the patient to quit smoking. In a few families, the women made unilateral
97
decisions (eg, planning a move to the country) that had far reaching implications for the family integrity, and they were going to implement them no matter what. " I ' v e had a second chance and I'm gonna do the best I can with my life and I really do try to include him but sometimes I can't. I'll just do whatever I have to do to suit me," Other shifts involved changes in behavior that might have been problematic. Some of the women "realized the fragility of existence" and made changes owing to it. "I've gone into a different plane, a different way of observing things, a different way of feeling about things, definitely a different sense of priorities, a different attitude to people, a loss of materialism . . . a spiritual change . . . a psychic change of some kind . . . and [husband] has to deal with them too." Her husband agreed and said the change was "far bigger than even the week after the operation." The wife said the change was hard on her, but she got to the point where she did not feel guilty. At the end of 1 year, her husband believed that she was getting these new priorities better aligned. The process of coping with the cancer experience resulted in the family making changes and altering priorities. Some families met this challenge well. Others found adjusting to the changes from their normal living pattern difficult. Initially, during the period of diagnosis with its uncertainty and waiting, some families talked about things being "on hold" and "in limbo." It was looked on favorably when life returned to normal. Loss of control. Although not stated by a large number of families, there was one group who commented on the powerlessness they felt because they were in a situation that they could hardly control. It was not having control of the cancer that frustrated and terrified the families. As two husbands put it, "Cancer is a bugger. If you don't catch it, there's nothing you can do about it," and "It's in charge of you." In addition, it was the feeling of not having control over one's role: " I have always been on top and now the roles are reversed and 1 have lost control."
Managing Other lssues Families were frequently coping with other major concerns, such as other medical problems of the patient or of other family members, work and financial concerns, and a variety of other issues that required attention. Although initially the pa-
B. ANN HILTON
98
tient's breast cancer diagnosis and treatment was usually the major concern and had the highest priority, other issues often remained. At times, these were either put on hold or confronted, but they added to the pile of things the families had to face. Other problems and issues developed as the year progressed. All of the women who were working took some time off for the surgical procedure, but the amount of time varied considerably. Many of the couples worked at stressful jobs. Many worked full time as well as being both mother and wife. Several women were rethinking their jobs although others were very happy or satisfied in their work. For most of those who had taken considerable time off, it was difficult to return to work, and some had not returned after 8 months. Some families also had financial concerns. This was not restricted to those with lower income levels. Professional couples also discussed financial concerns. Many of these concerns were related to the fact that less money was being earned during the treatment and recuperation period. However, other aspects of finances that may already have been a problem were compounded. Family members, and particularly the partners, had acute and chronic medical problems that required attention and were of concern at various points. The partners had medical problems that included strokes, heart conditions, arthritis, cancer, orthopedic problems, and clinical depression. The degree of physical limitation of the partners often influenced their abilities to provide physical support to the patient postoperatively. The health of children at home was very good. However, significant medical problems occurred in adult children living away from home, parents of the patient and partner, grandchildren, siblings, in-laws, and friends or acquaintances. When other family members required testing for suspicious symptoms, stress was elevated, particularly if cancer was a possibility. Family members often expressed concerns about others beyond their immediate family and how they were coping with the cancer concern. At times others overreacted to the news. Some people could not deal with the cancer, and the patient or the family felt rejected by them. Families were sometimes in the midst of resolving other major issues or changes when the breast cancer was diagnosed. One couple was resolving
the death of the wife's mother, which had occurred 3 months earlier. Two other families were still dealing with deaths of children within the previous 2 years. For one family, it was the death of an infant, and in another family, it was the death of an adult son. Other families were in the midst of major living changes, such as renovations, physical relocation, or permanent or temporary changes in household members. Several families talked about the overload of events that had occurred at the time of diagnosis and treatment and the fact that this overload made it much more difficult for them to cope. DISCUSSION
Initially the families' problems were related to the cancer diagnosis, treatment, and effects of coping with cancer in the family. Once the initial tests and surgery were performed and further treatment was started, waiting was not a concern. Being informed and making informed decisions were particularly relevant in the early period and often became issues again at various points in the year. Not requiring further treatment beyond the initial surgery certainly gave families fewer issues to contend with and allowed them to more quickly get back to normal. Although uncertainty was particularly increased at the time of diagnosis, it decreased later. However, it continued to remain an issue to some extent for most families, as Findings by Lewis also indicated that when cancer recurrence happened in one family, the family's uncertainty level went well beyond their initial level, and it continued to remain high (personal communication, 1989). Issues regarding the functional patterns of the family were evident throughout the year. However, communication problems were more predominant initially. Issues with disruption of plans and being unable to plan were identified, especially at 2 to 3 months when RT and CT were performed. As expected, when there were problems in marital/family dynamics, there were frequently concurrent problems with re-allocation of household chores, disrupted plans, and issues around shifting priorities. Generally, themes shown in the current study were identified within the various classifications of previous studies. 19'27'30"33-36'44'45'49"52 The diagnosis of cancer presented many problems, issues,
FAMILIES COPING WITH CANCER
99
and challenges for families to manage within the context of their daily lives. The nature and extent of these problems and the degree of impact presented by each were influenced by many factors. The families' ways of managing these problems were also influenced. The findings of this study have shown that it is the responsibility of nurses and health professionals to assess cancer's impact not only on the patient but also on the family as a unit and on the individual family members. The findings indicate which families are more at risk for problems, issues, or challenges. Efforts should be concentrated on those families. Although family members may perceive their own family situations similarly and may use similar coping methods, divergent views and coping styles are evident. Nurses need to be aware that these styles generally become more problematic when a sense of being supportive or being supported is absent. It is therefore essential to assess the supportive nature of the family, and this may not necessarily be reflected in open discussion of their concems. Families who talk little may not find that problematic. Although the particularly troublesome period is the time leading up to and during diagnosis and
treatment, difficulties continue to arise over the first year for many families. This illustrates the need for information and counseling and the need for the family to know where they can get assistance at any point. During the early period, which often involves considerable waiting, uncertainty, and stress, the nurse in the surgeon's office plays a vital role. Because hospitalization is often short for these women, nurses must quickly assess and intervene as needed. Further teaching to assist families in coping better at home and in knowing what they should do and should not do would be helpful. It is essential that the family perceive health professionals as caring. Although many problems that the families face are difficult and probably cannot be minimized, there are other issues and concerns that can be prevented or alleviated. Nurses have many of the skills needed to assist in minimizing the family's distress. ACKNOWLEDGMENTS The author wants to express appreciation to the coprincipal investigator, Dr. Patricia Rebbeck, to the other surgeons and office staff for their involvement in recruitment, to the members of the research team, and to the families who participated in the study.
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