171
Patient Education and Counseling, 15 (1990) 171-179 Elsevier Scientific Publishers Ireland Ltd.
Original Articles
Meeting Information Needs of Significant the Cancer Information Service
Others: Use of
Helen I. Meissner, D. Michael Anderson and Joanne C. Odenkirchen Health Promotion Sciences Branch, Division of Cancer Prevention North, 9000 Rockville Pike, Bethesda, MD 20892 (U.S.A.)
and Control, National Cancer Institute, 241 Executive Plaza
(Received June 2Oth, 1989) (Accepted September 19th, 1989)
Abstract Although significant others (spouses, relatives and friends) of cancer patients play an important role in providing support and assistance to the patient, their need for information regarding the disease is frequently overlooked by the health care system. This analysis examines information needs of (1) diagnosed cancer patients, (2) significant others of diagnosed cancer patients and (3) the general public, as reflected in their calls to the Cancer Information Service (CIS), a national toll-free telephone inquiry service. Major focus is on the types of cancer-related subjects significant others inquire about, as well as how they first found out about the CIS. Results indicate that significant others are similar to diagnosed cancer patients in their need for additional information on specific cancer sites, treatment, and referrals for second opinions, but differ in their request for information on counseling services and clinical trials. Additionally, significant others and H.I. Meissner, SCM, Public Health Advisor. D.M. Anderson, PhD,MPH, Health Promotion Science Officer. J.C. Odenkirchen, BS, Public Health Advisor.
cancer patients are similar in how they find out about the CIS. In contrast, significant others differ from the general public in their information requirements, as well as in their source of referral to the CIS. While the CIS appears to be a channel of communication capable of addressing the dynamic information needs of significant others, further research concerning the effectiveness of the CIS and other channels of cancer information in satisfying the information requirements of significant others is recommended. Keywords: Significant others; Cancer Information Service. Introduction Cancer will strike about 76 million, or 30%, of Americans now living [ 11. Fortunately, individuals diagnosed with cancer today have the benefit of recent advances in cancer treatment and control which have greatly improved the likelihood of surviving the disease. Approximately 49% of patients who develop cancer this year will be alive 5 years after diagnosis about a 10% improvement in 5-year relative survival rate
0738-3991/90/$03.50 0 1990 Elsevier Scientific Publishers Ireland Ltd. Published and Printed in Ireland
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since the 1960s. The National Cancer Institute (NCI) postulates that this figure can improve even further with widespread adoption of state-of-the-art cancer treatment 121, and has set, as one of the National Cancer Control Objectives for the Year 2000, a goal of reducing cancer mortality through increased application of these therapies. Critical to the achievement of this objective is the need to explore all possible communication channels in the transfer of cancer information, determine their effectiveness and assess where gaps in the provision of information exist. This analysis examines the use of one such communication channel, the Cancer Information Service, in meeting the information needs of cancer patients’ significant others (spouses, relatives and friends), an important yet frequently overlooked population. Because of the role they play in seeking information, providing psychosocial support and physical care, and influencing decisions about and complicance with recommended therapy, significant others of cancer patients are a valuable resource in attaining NCI’s Cancer Control Objectives [3]. Thus, it is of interest from both planning and theoretical perspectives, to learn as much as we can about information-seeking characteristics of significant others. Background Significant others can play an important role in the cancer patient’s ability to respond to and cope with the stress of living with the disease, and can provide assistance and support in the patient’s treatment and care [47]. Patients reporting solid support networks are better able to cope with their illness than those lacking support [8] and, in general, research indicates that social relationships have a positive impact on health [9]. Furthermore, significant others are associated with promoting patient compliance with med[8,10]. Little attention, ical regimens however, has been given to the needs of the providers of support [ 111. Research indicates that the psychological status of patients and their families is similar,
suggesting that supportive intervention for either the patient or relative should benefit both [5]. Family members vary in their ability to adapt to the diagnosis of cancer and it is obvious that they, too, are in need of information and support. Frequently, however, the needs of families are not met by the health care system that is treating the patient [12161. Family members report a need for more information and assistance to help them understand the illness, yet often do not have a sense of communicating with the health care provider [13]. In a review of the literature on the impact of cancer on the family, Northouse 1171 describes phases that families move through as the patients’ disease progresses: the initial phase (when they are first informed of the diagnosis); the adaptation phase (when the patient is receiving treatment); and the terminal phase (when the patient’s condition deteriorates). Each phase presents new obstacles for the family to overcome, and, as a result, presents the need for new information. In the initial phase of cancer, family members report a significant desire for informaprofessionals, tion from health yet information may be difficult to obtain and comprehend. Seeking information regarding diagnosis and treatment in this phase is a coping mechanism that may provide the family with some intellectual control over the cancer progress [4,11]. In the adaptation phase, information may help reduce feelings of uncertainty, while in the terminal phase, information may assist the family in the area of physical care of the patient [4]. It is interesting to note that in the early stages of cancer, information seeking is cited as a much more important coping strategy than in the final stages, possibly because obtaining additional information in later stages of illness does not help in problem resolution, and for certain questions at this stage of the disease, answers do not exist [ 111. Cancer Information Service The increasing number of cancer patients,
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and their longer survival time has created a growing demand for the availability of services to provide cancer patients and their significant others with information on cancer prevention, detection and treatment, as well as support. Since 1976, the National Cancer Institute has supported a national cancer communications program including the Cancer Information Service (CIS) - a national toll-free telephone inquiry service (1-800-4CANCER), The CIS provides accurate, upto-date information on cancer prevention, treatment, and resources to cancer patients and their families, the general public, and health professionals. The program is designed to facilitate reductions in cancer incidence and mortality by increasing public knowledge about the disease, providing information on the availability of state-of-the-art cancer treatment and clinical trials, and by educating individuals on how to prevent or reduce their risk of the disease [ 181. Currently, twenty-six regional CIS offices serve over 85% of the US population, with the remainder being served by a national office at the NCI. Close to 400,000 inquiries are handled by the CIS annually [ 181. This descriptive analysis will examine information needs of the significant others of diagnosed cancer patients, as reflected in their telephone calls to the CIS. Specifically, it will focus on determining which cancer related topics significant others inquire about most frequently, as well as how they first found out about the CIS, and compare these results to requests by cancer patients and the general public. This information may help medical care providers meet the information needs of their cancer patients, as well as their patients’ spouses, relatives, and friends. Methods
Since 1983, all calls to the CIS have been recorded on a standardized call record form. Information about each inquiry, including type of caller (e.g., patient, general public, etc.), caller demographics, subject of inquiry, and how the caller found out about the CIS,
is recorded on the call record form by trained telephone counselors using a standardized coding system. Data used in this analysis were compiled between 1983 and 1987 on a call record form completed for each caller. This analysis examines a subsample of the entire data set consisting only of calls from (1) diagnosed cancer patients, (2) the significant others (spouses, relatives and friends) of diagnosed cancer patients, and for comparison, (3) callers from the general public. Diagnosed cancer patients are defined as those callers who state that they have been diagnosed with cancer by a physician. Due to the design of the call record form, it is not possible to determine whether the “diagnosed cancer patient” is recently diagnosed, has a recurring cancer, etc. Likewise, significant others of diagnosed cancer patients are callers who state that they are a spouse, relative or friend of a diagnosed cancer patient. Again, due to the design of the data collection instrument, it is not possible to separate what proportion of these significant others are spouses, relatives or friends. The general public callers are defined as all members of the lay public who do not fall into the categories listed above, are not undiagnosed persons with symptoms (or their significant others), and are not students or professionals calling in that capacity. The subsample analyzed here is comprised of more than 750,000 inquiries or 58% of all first time callers to the CIS. The remaining 42% of callers who were omitted from this subsample include health professionals, other professionals, students, and symptomatic, undiagnosed persons and their significant others. These data were collected from every state in the United States, with additional calls from Puerto Rico, Canada, Mexico, the Virgin Islands, and other countries. The sample is 30% male and 70% female. Six percent of the callers are 19 years of age or less, 42% are 20-39 years, 34% are 40-59 years, and 18% are 60 years or older. Twelve percent have had less than a high school education, 35% are high school graduates, 26% have had some college and 27% are college
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graduates. The sample is 89% White, 6% Black, 3% Hispanic and 2% Asian or Pacific Islanders. There are no significant differences between the three caller groups (patients, significant others, and the general public) in education, ethnicity, or gender. Differences do exist with age, however. Not surprisingly, diagnosed patients call with increasing frequency as age increases. Significant others call most often in their 30s and 4Os, perhaps because they are calling about their parents. For the general public, most calls come from people in the 20-39 age group. Callers to the CIS, in general, are better educated and represent a larger proportion of Whites and women than the general US population. Overall, these data form a self-selected sample, which, although anonymous, was not randomly selected and should not be assumed to be representative of a larger population. Results Callers’ subject of inquiry As seen in Table I, significant others are similar to diagnosed cancer patients in the subjects they inquire about, but are markedly different from the general public’s inquiries regarding cancer. Most often, significant others request information on a specific cancer site (e.g., “Tell me all you can about breast cancer”); have general questions about cancer treatment (e.g., “What are the ways to treat breast cancer?“); and ask for referrals to another physician for a second opinion
Table I.
Five most frequent subjects of inquiry to the CIS by type of caller (percent of call+.
Rank
Significant others (N = 189,755)
1 2 3
Site information Treatment Referral/ 2nd opinion Counseling Clinical trials
4 5
(e.g., “Where can my husband get a second opinion from a cancer expert?“). These are also the first three subjects inquired about most frequently by cancer patients themselves, in almost identical percentages of calls, indicating the similar concerns of these two groups. These two groups of callers differ in the fourth and fifth most frequent subject of inquiry, however. The fourth ranking information request of significant others is questions about counseling services or coping groups for either patients or themselves. Significant others also request information pertaining to clinical trials, which are current, ongoing research studies conducted with patients and are usually designed to evaluate new cancer treatments. For diagnosed patients, requests for pamphlets or other publications on specific topics ranks fourth. Cancer patients also call frequently about chemotherapy treatments. Where significant others call about counseling, an active coping strategy, cancer patients call about the more passive strategy of reading materials. Each request is a possible reflection of the on-going coping mechanisms of both groups. Similarly, significant others’ requests for information on clinical trials suggests they are interested in seeking other, active therapeutic strategies for the patient, whereas cancer patients themselves want to know about their current or prescribed therapy. Members of the general public, by comparison, show a very different pattern of requests by placing more prevention oriented calls to
General public (N = 470,590)
Diagnosed patients (N = 89,876) 26% 13% 12% 11% 10%
Site information Treatment Referral/ 2nd opinion Publications Chemotherapy
25% 13% 13% 9% 9”/0
“Percent may be greater than 100 since callers may have more than one subject of inquiry.
Publications Smoking Prevention - primary
52% 38% 28%
Prevention - primary General cancer
10% 6%
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the CIS. Their top three subjects of inquiry are for: (1) publications on various cancerrelated topics; (2) information specifically about smoking and tobacco use; and (3) general questions about cancer prevention other than smoking (e.g., “What are some ways I can prevent cancer?“). These calls are followed by: (4) inquiries about diet and nutrition related to cancer prevention; and (5) requests for information about cancer in general, including non-site specific calls (e.g., “What is cancer?“, “How do cancer cells grow?“, “If something is malignant, does that mean it is cancer?“). How callers found the CIS
As shown in Fig. 1, significant others most frequently find out about the Cancer Information Service from health professionals and health agencies (28% of calls). These sources of information or referrals include the American Cancer Society, the American Lung Association, health educators, nurses, physicians and their staff, as well as other CIS offices. It is interesting to note that physicians contribute less than 1% of all referrals to the CIS for the relatives and friends of their patients. Written materials such as brochures,
books, pamphlets, posters, newspapers, magazine articles, special NC1 promotions, and CIS notices on cereal boxes also are frequently cited sources of information (23%). Directory assistance, the l-800 information operator, and the telephone book are also cited (22%) by significant others as how they first find out about the CIS. These callers also name other friends and relatives (15%) as frequent sources of information. Diagnosed patients find out about the CIS most often through publications (30% of calls). Patients also frequently cite health professionals as sources of information on the CIS (23%). Similar to the findings for significant others, physicians comprise 1% of all diagnosed patients’ referrals to the CIS. A few other results are noteworthy. In contrast to significant others and cancer patients, the general public cites television most often as their source for first learning about the CIS (58% of calls). Radio is a much less important source of learning about the CIS than TV. However, when we compare the influence of radio on all three groups of callers, it appears to be most effective in informing the general public about the CIS (11% of calls). Diagnosed patients cite written materials,
Significant Others Diagnosed Patient General Public
Health Professional
Phone Assistance
Significant Others
Publications
Sources of Information Fig. 1.
How callers first found out about the CIS.
n/
Radio
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either NC1 or other health publications or mention in the press, with somewhat more frequency than significant others or the general public. Discussion
Information needs of significant others There is little doubt that spouses, relatives, and friends of cancer patients have substantial information needs throughout the course of the patient’s illness, and that meeting these needs can benefit both the patient and his or her family [4,6,8]. The active quest for information by significant others is reflected not only in the number and types of calls that they make, but also in the fact that they actively seek out sources of information, such as the CIS, through health agencies and professionals, telephone assistance and friends, in contrast to the general public which finds out about the CIS more passively through mass media. Like patients, significant others are interested in learning more about the disease and how it should be treated, as well as getting second opinions from other physicians. It is understandable that these issues are of primary importance to patients and their significant others. Gaining an understanding of the disease and its treatment also can help them gain a sense of control over what may feel like a hopeless situation. This may be an especially important coping strategy for those significant others who live long distances from the patient and therefore have a more limited role in their treatment and care. Furconsensus from other health thermore, professionals regarding the best treatment options serves as reassurance that the patient is receiving the best care possible. The large volume of questions regarding the disease, its treatment, and referral to other physicians may reflect the fact that relatives and friends of cancer patients often do not have an effective communicative link to the health care provider, and may thus feel they are not receiving sufficient information,
or are unsure of the implications and prognosis of the patients’ illness. This lack of communication between health professionals and significant others of cancer patients is cited in the research literature which reports that families of cancer patients often state that they infrequently communicated with, or received support from health care professionals throughout the course of illness [l&16]. Significant others might have difficulty accepting the treatment that the patient is receiving and are interested in exploring new advances in treatment to improve the patients’ chances of survival. This may explain why signfiicant others are more likely to ask about clinical trials as a treatment option, while patients, who have a closer link to the medical care staff, may more readily accept prescribed therapy. It also is quite possible that significant others are requesting this information for the patient who may be too sick to place the call himself/herself. Nevertheless, these results indicate that significant others may be taking an active role as a patient advocate. While their primary concerns are focused on the patient, significant others also request information on counseling and assistance with coping with cancer, implying that in addition to their interest in helping the patient, they are in need of support themselves. A feeling of helplessness or loss of control may prompt significant others, to seek such assistance. Thus, health care professionals may need to be reminded of the impact that cancer has on the lives of those close to the patient. We must determine the type of support that is valuable to significant others and target our programs to include these individuals as well as the patient. As significant others move with the patient through different phases of the illness, the need for additional information arises (e.g., getting second opinions or providing appropriate care and support to the patient). Research indicates, however, that families of cancer patients often perceive supportive ser-
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vices as inadequate or non-existent - even when the services are explicitly available [ 151. It may be that the health care professionals communicated the necessary information, but not at a time when it was of perceived value to the individual. In a review of patient information needs, Evans and Clarke [8] suggest that information is valued only to the degree that it is salient, meaning that information is perceived as applicable to the problem only at the time that the problem is recognized. Teaching patients about a therapeutic regimen may fall on deaf ears as long as the individual defines the problem of illness in terms of coping with its emotional side effects. If the individual can resolve emotional side effects, they can move to the next aspect of the disease, such as medical treatment. It is at this point that the information about the regimen becomes salient [8]. Thus, if interventions are developed with consideration given to changing information requirements over time, they may be more effective in communicating information that is of value to the individual. Health care professionals should be aware of these communication problems and make a conscious effort to supply their patients and their patients’ significant others with appropriate information, or offer suggestions on how and where to get additional information, such as referring them to the CIS. It seems apparent that there is a need not only to identify information resources for significant others repeatedly over time, but also to promote these resources and services specifically for significant others. Providing information to significant others The Cancer Information Service is a channel of communication that is ideally suited for addressing dynamic information needs. Each question is answered on an individual basis by a trained telephone counselor at a time that is of value to the caller. The CIS can provide information that significant others may not be receiving from medical staff or the patient, or it may provide repetition and clarification
of important information already communicated to the individual. Given that communicating information to the cancer patient and his or her significant others is likely to be the responsibility of the treating physician [19], and given the ability of the CIS to serve as a cost-free, anonymous, and individualized source of up-to-date information and support to cancer patient.s and their families, it is important for the physician and members of the physician’s staff to suggest to patients and their significant others that they might benefit from calling the CIS. The fact that less than 1% of all significant others find out about the CIS from the patient’s physician suggests that significant others may not be communicating directly with the physician (this is especially likely if the significant other lives far away from the patient), that the physician may not be aware of significant others’ needs for additional information, or that the physician does not know about the CIS as a source of information available to all individuals in need of cancer information. Data from mastectomy patients and their husbands indicate that husbands perceive having limited opportunities to obtain information and support from nurses and physicians. Furthermore, some of the patients’ husbands were hesitant to “bother” health professionals who seemed busy caring for a large number of patients [16]. This situation may also hold true for patients, who also do not appear to be referred to the CIS by their physicians. Research data suggest that patients may be reluctant to ask questions because they think their physicians are too busy to answer them, they do not wish to be seen as “complaining” [19], or they simply do not know what questions to ask. Physicians, on the other hand, may think that their patients are satisfied with the information they are getting because they are not asking questions. Thus, a vicious cycle perpetuating a lack of communication may develop [20]. One must acknowledge that evaluating and monitoring the information and support
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needs of the patient and his or her significant others can be complex and time consuming [7]. Thus, referrals to resources, such as the CIS, social services, etc. may provide a necessary supplement to the health care provider’s own ongoing support. Conclusion In this analysis we have shown that significant others choose to be active participants in the cancer patient’s care and treatment by seeking out additional sources of cancer information, such as the CIS. As reflected in the volume of calls to the CIS by significant others (almost 190,000 between 1983 and 1987), we see that the diagnosis of cancer effects not only the patient, but also those individuals comprising the patient’s interpersonal network. Although the supportive role that significant others play in promoting the health and well-being of the patient has been widely documented, it is apparent that more attention needs to be given to addressing the information needs of this population. Given different types of cancers and treatment options, and the dynamic nature of information that is needed for coping with different phases of the disease, static channels of information (e.g. pamphlets), or traditional approaches to patient education (e.g., meetings with medical staff that are constrained by time) are not likely to satisfy the changing information requirements of cancer patient or their significant others [8]. Health care professionals need to be cognizant of this, and further investigation to develop interventions that can meet these changing needs is required (Table II). Longitudinal studies are needed to assess the impact of cancer on significant others over time and to determine which sources of information significant others prefer in satisfying their information needs during the course of the patient’s illness. Furthermore, we need to examine these sources of information in several dimensions, including credibility, accessibility and availability.
Table II. Information needs recommendations for practice.
of
significant
others:
Target education programs to include significant others, a well as patients Assess how information targeted to one population (signifi cant others or patients) impacts on the other Identify information resources repeatedly over time Promote others
resources and services specifically for significan
Develop a system of referrals to resources Provide sources of information beyond the doctor’s office 01 hospital Develop programs that meet changing information throughout the course of illness
need:
Recognize socioeconomic and cultural factors that impedr access to information, and develop strategies to improw communication
While physicians are generally viewed as a most credible source of medical information, their time available for answering questions may be limited. A telephone network, such as the CIS, has the advantage of being available daytime and evening hours to any individual with access to a telephone. A 1983 survey of user satisfaction with the CIS found that an overwhelming majority of respondents considered the service helpful, clear and easy to understand [18]. Thus, the doctor’s office or hospital should not be considered the only setting to address information needs of significant others. Additionally, we must find out how to reach those individuals who are in need of information, but are not calling the CIS. As noted earlier, CIS callers are a biased sample representing a larger proportion of better educated individuals than the general population. Research has demonstrated that sociodemographic characteristics, especially social class and educational background, influence doctor-patient communication [21]. Working class patients tend to hesitate more than professional and non-manual workers in requesting information from their physicians, though their desire for information is as
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great. Likewise, physicians’ social class of origin is predictive of their information-giving behavior [21]. These findings suggest, then, that lower socioeconomic segments of the population are not receiving information about illness from medical staff or from channels such as the CIS. Therefore, further attention should be given to improving these disparities in information transmittal. Since the information needs of the patient are not necessarily the same as the needs of their significant others, we must also determine how to effectively address the needs of these two populations simultaneously, and determine how interventions targeted to one population impacts on the other. As active participants in the patients’ care, it is likely that satisfying the information needs of the significant others of cancer patients will have a favorable impact on the patients’ health, as well as their own.
5
6
I 8
9 10
11
12
13
Acknowledgement
14
The authors wish to express their appreciation to Kate Duffy. Project Officer of the Cancer Information Service, for her assistance in the preparation of this article, and to the CIS telephone counselors who provide such an important service to cancer patients and their significant others.
15
References
16 17 18
American Cancer Society: Cancer Facts & Figures 1989. Atlanta, GA: American Cancer Society, 1989. Cancer Control Objectives for the Nation, 1985-2000. Nat1 Cancer Inst Monogr 1986; 2. Philipds BU: The forgotten family: an untapped resource in cancer prevention. Fam Commun Health 1989; 11: 17 -31. Lewandowski W, Jones SL: The family with cancer: nursing interventions throughout the course of living with cancer. Cancer Nurs 1988; 11: 313-321.
19
20 21
Cassileth BR, Lusk EJ, Strouse TB, Miller DS, Brown LL, Cross PA: A psychological analysis of cancer patients and their next-of-kin. Cancer 1985; 55: 72-76. Taylor SE, Falke RL, Shoptaw SJ, Lichtman RR: Social support, support groups, and the cancer patient. J Consult Clin Psycho1 1986; 54: 608-615. Gates CC: The “most-significant-other” in the care of the breast cancer patient. CA 1988; 38: 146--153. Evans SH, Clarke P: When cancer patients fail to get well: flaws in health communication. In: Bostrum RN ed. Communication Yearbook 7. Beverly Hills, CA: Sage Publications, 1983. Wortman CB: Social support and the cancer patient. Cancer 1984; 53: 2339-2362. Doherty WJ, Schrott HG, Metcalf L, Iasiello-Vailas L: Effect of spouse support and health beliefs on medication adherence. J Fam Prac 1983; 17: 837-841. Gotay CC: The experience of cancer during early and advanced stages: the views of patients and their mates. Sot Scimed 1984; 18: 605-613. Whittenberg JL: Family needs for information and support. In: Oncology Nursing Society’s Ninth Annual Congress (meeting abstract) May 2-5, 1984, p. 56. Krant MJ, Johnston L: Family members’ perceptions of communications in late stage cancer. lnt J Psychiatry Med 1978; 8: 203-216. Wright K, Dyck S: Expressed concerns of adult cancer patients’ family members. Cancer Nurs 1984; 7: 371374. Lewis FM: The impact of cancer on the family: a critical analysis of the research literature. Patients Educ Couns 1986; 8: 269-289. Northouse LL: Social support in patients; and husbands’ adjustment to breast cancer. Nurs Res 1988; 37: 91-95. Northouse L: The impact of cancer on the family: an overview. Int J Psychiatry Med 1984; 14: 215-242. Ward JAD, Duffy K, Sciandra R, Karlins S: What the public wants to know about cancer: the Cancer Information Service. Cancer Bull 1988; 40:L 384-389. Mclntosh J: Process of communiation information seeking and control associated with cancer: a selective review of the literature. Sot Sci Med 1974; 8: 167--187. Morra ME: Making choices: the consumer’s perspective. Cancer Nurs 1985; 8: 54-59. Waitzkin H: Information giving in medical care. J Health Sot Behav 1985; 26: 81-101.
Patient Education and Counseling, 15 (1990) 171-179 Elsevier Scientific Publishers Ireland Ltd.
Original Articles
Meeting Information Needs of Significant the Cancer Information Service
Others: Use of
Helen I. Meissner, D. Michael Anderson and Joanne C. Odenkirchen Health Promotion Sciences Branch, Division of Cancer Prevention North, 9000 Rockville Pike, Bethesda, MD 20892 (U.S.A.)
and Control, National Cancer Institute, 241 Executive Plaza
(Received June 2Oth, 1989) (Accepted September 19th, 1989)
Abstract Although significant others (spouses, relatives and friends) of cancer patients play an important role in providing support and assistance to the patient, their need for information regarding the disease is frequently overlooked by the health care system. This analysis examines information needs of (1) diagnosed cancer patients, (2) significant others of diagnosed cancer patients and (3) the general public, as reflected in their calls to the Cancer Information Service (CIS), a national toll-free telephone inquiry service. Major focus is on the types of cancer-related subjects significant others inquire about, as well as how they first found out about the CIS. Results indicate that significant others are similar to diagnosed cancer patients in their need for additional information on specific cancer sites, treatment, and referrals for second opinions, but differ in their request for information on counseling services and clinical trials. Additionally, significant others and H.I. Meissner, SCM, Public Health Advisor. D.M. Anderson, PhD,MPH, Health Promotion Science Officer. J.C. Odenkirchen, BS, Public Health Advisor.
cancer patients are similar in how they find out about the CIS. In contrast, significant others differ from the general public in their information requirements, as well as in their source of referral to the CIS. While the CIS appears to be a channel of communication capable of addressing the dynamic information needs of significant others, further research concerning the effectiveness of the CIS and other channels of cancer information in satisfying the information requirements of significant others is recommended. Keywords: Significant others; Cancer Information Service. Introduction Cancer will strike about 76 million, or 30%, of Americans now living [ 11. Fortunately, individuals diagnosed with cancer today have the benefit of recent advances in cancer treatment and control which have greatly improved the likelihood of surviving the disease. Approximately 49% of patients who develop cancer this year will be alive 5 years after diagnosis about a 10% improvement in 5-year relative survival rate
0738-3991/90/$03.50 0 1990 Elsevier Scientific Publishers Ireland Ltd. Published and Printed in Ireland
172
since the 1960s. The National Cancer Institute (NCI) postulates that this figure can improve even further with widespread adoption of state-of-the-art cancer treatment 121, and has set, as one of the National Cancer Control Objectives for the Year 2000, a goal of reducing cancer mortality through increased application of these therapies. Critical to the achievement of this objective is the need to explore all possible communication channels in the transfer of cancer information, determine their effectiveness and assess where gaps in the provision of information exist. This analysis examines the use of one such communication channel, the Cancer Information Service, in meeting the information needs of cancer patients’ significant others (spouses, relatives and friends), an important yet frequently overlooked population. Because of the role they play in seeking information, providing psychosocial support and physical care, and influencing decisions about and complicance with recommended therapy, significant others of cancer patients are a valuable resource in attaining NCI’s Cancer Control Objectives [3]. Thus, it is of interest from both planning and theoretical perspectives, to learn as much as we can about information-seeking characteristics of significant others. Background Significant others can play an important role in the cancer patient’s ability to respond to and cope with the stress of living with the disease, and can provide assistance and support in the patient’s treatment and care [47]. Patients reporting solid support networks are better able to cope with their illness than those lacking support [8] and, in general, research indicates that social relationships have a positive impact on health [9]. Furthermore, significant others are associated with promoting patient compliance with med[8,10]. Little attention, ical regimens however, has been given to the needs of the providers of support [ 111. Research indicates that the psychological status of patients and their families is similar,
suggesting that supportive intervention for either the patient or relative should benefit both [5]. Family members vary in their ability to adapt to the diagnosis of cancer and it is obvious that they, too, are in need of information and support. Frequently, however, the needs of families are not met by the health care system that is treating the patient [12161. Family members report a need for more information and assistance to help them understand the illness, yet often do not have a sense of communicating with the health care provider [13]. In a review of the literature on the impact of cancer on the family, Northouse 1171 describes phases that families move through as the patients’ disease progresses: the initial phase (when they are first informed of the diagnosis); the adaptation phase (when the patient is receiving treatment); and the terminal phase (when the patient’s condition deteriorates). Each phase presents new obstacles for the family to overcome, and, as a result, presents the need for new information. In the initial phase of cancer, family members report a significant desire for informaprofessionals, tion from health yet information may be difficult to obtain and comprehend. Seeking information regarding diagnosis and treatment in this phase is a coping mechanism that may provide the family with some intellectual control over the cancer progress [4,11]. In the adaptation phase, information may help reduce feelings of uncertainty, while in the terminal phase, information may assist the family in the area of physical care of the patient [4]. It is interesting to note that in the early stages of cancer, information seeking is cited as a much more important coping strategy than in the final stages, possibly because obtaining additional information in later stages of illness does not help in problem resolution, and for certain questions at this stage of the disease, answers do not exist [ 111. Cancer Information Service The increasing number of cancer patients,
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and their longer survival time has created a growing demand for the availability of services to provide cancer patients and their significant others with information on cancer prevention, detection and treatment, as well as support. Since 1976, the National Cancer Institute has supported a national cancer communications program including the Cancer Information Service (CIS) - a national toll-free telephone inquiry service (1-800-4CANCER), The CIS provides accurate, upto-date information on cancer prevention, treatment, and resources to cancer patients and their families, the general public, and health professionals. The program is designed to facilitate reductions in cancer incidence and mortality by increasing public knowledge about the disease, providing information on the availability of state-of-the-art cancer treatment and clinical trials, and by educating individuals on how to prevent or reduce their risk of the disease [ 181. Currently, twenty-six regional CIS offices serve over 85% of the US population, with the remainder being served by a national office at the NCI. Close to 400,000 inquiries are handled by the CIS annually [ 181. This descriptive analysis will examine information needs of the significant others of diagnosed cancer patients, as reflected in their telephone calls to the CIS. Specifically, it will focus on determining which cancer related topics significant others inquire about most frequently, as well as how they first found out about the CIS, and compare these results to requests by cancer patients and the general public. This information may help medical care providers meet the information needs of their cancer patients, as well as their patients’ spouses, relatives, and friends. Methods
Since 1983, all calls to the CIS have been recorded on a standardized call record form. Information about each inquiry, including type of caller (e.g., patient, general public, etc.), caller demographics, subject of inquiry, and how the caller found out about the CIS,
is recorded on the call record form by trained telephone counselors using a standardized coding system. Data used in this analysis were compiled between 1983 and 1987 on a call record form completed for each caller. This analysis examines a subsample of the entire data set consisting only of calls from (1) diagnosed cancer patients, (2) the significant others (spouses, relatives and friends) of diagnosed cancer patients, and for comparison, (3) callers from the general public. Diagnosed cancer patients are defined as those callers who state that they have been diagnosed with cancer by a physician. Due to the design of the call record form, it is not possible to determine whether the “diagnosed cancer patient” is recently diagnosed, has a recurring cancer, etc. Likewise, significant others of diagnosed cancer patients are callers who state that they are a spouse, relative or friend of a diagnosed cancer patient. Again, due to the design of the data collection instrument, it is not possible to separate what proportion of these significant others are spouses, relatives or friends. The general public callers are defined as all members of the lay public who do not fall into the categories listed above, are not undiagnosed persons with symptoms (or their significant others), and are not students or professionals calling in that capacity. The subsample analyzed here is comprised of more than 750,000 inquiries or 58% of all first time callers to the CIS. The remaining 42% of callers who were omitted from this subsample include health professionals, other professionals, students, and symptomatic, undiagnosed persons and their significant others. These data were collected from every state in the United States, with additional calls from Puerto Rico, Canada, Mexico, the Virgin Islands, and other countries. The sample is 30% male and 70% female. Six percent of the callers are 19 years of age or less, 42% are 20-39 years, 34% are 40-59 years, and 18% are 60 years or older. Twelve percent have had less than a high school education, 35% are high school graduates, 26% have had some college and 27% are college
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graduates. The sample is 89% White, 6% Black, 3% Hispanic and 2% Asian or Pacific Islanders. There are no significant differences between the three caller groups (patients, significant others, and the general public) in education, ethnicity, or gender. Differences do exist with age, however. Not surprisingly, diagnosed patients call with increasing frequency as age increases. Significant others call most often in their 30s and 4Os, perhaps because they are calling about their parents. For the general public, most calls come from people in the 20-39 age group. Callers to the CIS, in general, are better educated and represent a larger proportion of Whites and women than the general US population. Overall, these data form a self-selected sample, which, although anonymous, was not randomly selected and should not be assumed to be representative of a larger population. Results Callers’ subject of inquiry As seen in Table I, significant others are similar to diagnosed cancer patients in the subjects they inquire about, but are markedly different from the general public’s inquiries regarding cancer. Most often, significant others request information on a specific cancer site (e.g., “Tell me all you can about breast cancer”); have general questions about cancer treatment (e.g., “What are the ways to treat breast cancer?“); and ask for referrals to another physician for a second opinion
Table I.
Five most frequent subjects of inquiry to the CIS by type of caller (percent of call+.
Rank
Significant others (N = 189,755)
1 2 3
Site information Treatment Referral/ 2nd opinion Counseling Clinical trials
4 5
(e.g., “Where can my husband get a second opinion from a cancer expert?“). These are also the first three subjects inquired about most frequently by cancer patients themselves, in almost identical percentages of calls, indicating the similar concerns of these two groups. These two groups of callers differ in the fourth and fifth most frequent subject of inquiry, however. The fourth ranking information request of significant others is questions about counseling services or coping groups for either patients or themselves. Significant others also request information pertaining to clinical trials, which are current, ongoing research studies conducted with patients and are usually designed to evaluate new cancer treatments. For diagnosed patients, requests for pamphlets or other publications on specific topics ranks fourth. Cancer patients also call frequently about chemotherapy treatments. Where significant others call about counseling, an active coping strategy, cancer patients call about the more passive strategy of reading materials. Each request is a possible reflection of the on-going coping mechanisms of both groups. Similarly, significant others’ requests for information on clinical trials suggests they are interested in seeking other, active therapeutic strategies for the patient, whereas cancer patients themselves want to know about their current or prescribed therapy. Members of the general public, by comparison, show a very different pattern of requests by placing more prevention oriented calls to
General public (N = 470,590)
Diagnosed patients (N = 89,876) 26% 13% 12% 11% 10%
Site information Treatment Referral/ 2nd opinion Publications Chemotherapy
25% 13% 13% 9% 9”/0
“Percent may be greater than 100 since callers may have more than one subject of inquiry.
Publications Smoking Prevention - primary
52% 38% 28%
Prevention - primary General cancer
10% 6%
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the CIS. Their top three subjects of inquiry are for: (1) publications on various cancerrelated topics; (2) information specifically about smoking and tobacco use; and (3) general questions about cancer prevention other than smoking (e.g., “What are some ways I can prevent cancer?“). These calls are followed by: (4) inquiries about diet and nutrition related to cancer prevention; and (5) requests for information about cancer in general, including non-site specific calls (e.g., “What is cancer?“, “How do cancer cells grow?“, “If something is malignant, does that mean it is cancer?“). How callers found the CIS
As shown in Fig. 1, significant others most frequently find out about the Cancer Information Service from health professionals and health agencies (28% of calls). These sources of information or referrals include the American Cancer Society, the American Lung Association, health educators, nurses, physicians and their staff, as well as other CIS offices. It is interesting to note that physicians contribute less than 1% of all referrals to the CIS for the relatives and friends of their patients. Written materials such as brochures,
books, pamphlets, posters, newspapers, magazine articles, special NC1 promotions, and CIS notices on cereal boxes also are frequently cited sources of information (23%). Directory assistance, the l-800 information operator, and the telephone book are also cited (22%) by significant others as how they first find out about the CIS. These callers also name other friends and relatives (15%) as frequent sources of information. Diagnosed patients find out about the CIS most often through publications (30% of calls). Patients also frequently cite health professionals as sources of information on the CIS (23%). Similar to the findings for significant others, physicians comprise 1% of all diagnosed patients’ referrals to the CIS. A few other results are noteworthy. In contrast to significant others and cancer patients, the general public cites television most often as their source for first learning about the CIS (58% of calls). Radio is a much less important source of learning about the CIS than TV. However, when we compare the influence of radio on all three groups of callers, it appears to be most effective in informing the general public about the CIS (11% of calls). Diagnosed patients cite written materials,
Significant Others Diagnosed Patient General Public
Health Professional
Phone Assistance
Significant Others
Publications
Sources of Information Fig. 1.
How callers first found out about the CIS.
n/
Radio
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either NC1 or other health publications or mention in the press, with somewhat more frequency than significant others or the general public. Discussion
Information needs of significant others There is little doubt that spouses, relatives, and friends of cancer patients have substantial information needs throughout the course of the patient’s illness, and that meeting these needs can benefit both the patient and his or her family [4,6,8]. The active quest for information by significant others is reflected not only in the number and types of calls that they make, but also in the fact that they actively seek out sources of information, such as the CIS, through health agencies and professionals, telephone assistance and friends, in contrast to the general public which finds out about the CIS more passively through mass media. Like patients, significant others are interested in learning more about the disease and how it should be treated, as well as getting second opinions from other physicians. It is understandable that these issues are of primary importance to patients and their significant others. Gaining an understanding of the disease and its treatment also can help them gain a sense of control over what may feel like a hopeless situation. This may be an especially important coping strategy for those significant others who live long distances from the patient and therefore have a more limited role in their treatment and care. Furconsensus from other health thermore, professionals regarding the best treatment options serves as reassurance that the patient is receiving the best care possible. The large volume of questions regarding the disease, its treatment, and referral to other physicians may reflect the fact that relatives and friends of cancer patients often do not have an effective communicative link to the health care provider, and may thus feel they are not receiving sufficient information,
or are unsure of the implications and prognosis of the patients’ illness. This lack of communication between health professionals and significant others of cancer patients is cited in the research literature which reports that families of cancer patients often state that they infrequently communicated with, or received support from health care professionals throughout the course of illness [l&16]. Significant others might have difficulty accepting the treatment that the patient is receiving and are interested in exploring new advances in treatment to improve the patients’ chances of survival. This may explain why signfiicant others are more likely to ask about clinical trials as a treatment option, while patients, who have a closer link to the medical care staff, may more readily accept prescribed therapy. It also is quite possible that significant others are requesting this information for the patient who may be too sick to place the call himself/herself. Nevertheless, these results indicate that significant others may be taking an active role as a patient advocate. While their primary concerns are focused on the patient, significant others also request information on counseling and assistance with coping with cancer, implying that in addition to their interest in helping the patient, they are in need of support themselves. A feeling of helplessness or loss of control may prompt significant others, to seek such assistance. Thus, health care professionals may need to be reminded of the impact that cancer has on the lives of those close to the patient. We must determine the type of support that is valuable to significant others and target our programs to include these individuals as well as the patient. As significant others move with the patient through different phases of the illness, the need for additional information arises (e.g., getting second opinions or providing appropriate care and support to the patient). Research indicates, however, that families of cancer patients often perceive supportive ser-
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vices as inadequate or non-existent - even when the services are explicitly available [ 151. It may be that the health care professionals communicated the necessary information, but not at a time when it was of perceived value to the individual. In a review of patient information needs, Evans and Clarke [8] suggest that information is valued only to the degree that it is salient, meaning that information is perceived as applicable to the problem only at the time that the problem is recognized. Teaching patients about a therapeutic regimen may fall on deaf ears as long as the individual defines the problem of illness in terms of coping with its emotional side effects. If the individual can resolve emotional side effects, they can move to the next aspect of the disease, such as medical treatment. It is at this point that the information about the regimen becomes salient [8]. Thus, if interventions are developed with consideration given to changing information requirements over time, they may be more effective in communicating information that is of value to the individual. Health care professionals should be aware of these communication problems and make a conscious effort to supply their patients and their patients’ significant others with appropriate information, or offer suggestions on how and where to get additional information, such as referring them to the CIS. It seems apparent that there is a need not only to identify information resources for significant others repeatedly over time, but also to promote these resources and services specifically for significant others. Providing information to significant others The Cancer Information Service is a channel of communication that is ideally suited for addressing dynamic information needs. Each question is answered on an individual basis by a trained telephone counselor at a time that is of value to the caller. The CIS can provide information that significant others may not be receiving from medical staff or the patient, or it may provide repetition and clarification
of important information already communicated to the individual. Given that communicating information to the cancer patient and his or her significant others is likely to be the responsibility of the treating physician [19], and given the ability of the CIS to serve as a cost-free, anonymous, and individualized source of up-to-date information and support to cancer patient.s and their families, it is important for the physician and members of the physician’s staff to suggest to patients and their significant others that they might benefit from calling the CIS. The fact that less than 1% of all significant others find out about the CIS from the patient’s physician suggests that significant others may not be communicating directly with the physician (this is especially likely if the significant other lives far away from the patient), that the physician may not be aware of significant others’ needs for additional information, or that the physician does not know about the CIS as a source of information available to all individuals in need of cancer information. Data from mastectomy patients and their husbands indicate that husbands perceive having limited opportunities to obtain information and support from nurses and physicians. Furthermore, some of the patients’ husbands were hesitant to “bother” health professionals who seemed busy caring for a large number of patients [16]. This situation may also hold true for patients, who also do not appear to be referred to the CIS by their physicians. Research data suggest that patients may be reluctant to ask questions because they think their physicians are too busy to answer them, they do not wish to be seen as “complaining” [19], or they simply do not know what questions to ask. Physicians, on the other hand, may think that their patients are satisfied with the information they are getting because they are not asking questions. Thus, a vicious cycle perpetuating a lack of communication may develop [20]. One must acknowledge that evaluating and monitoring the information and support
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needs of the patient and his or her significant others can be complex and time consuming [7]. Thus, referrals to resources, such as the CIS, social services, etc. may provide a necessary supplement to the health care provider’s own ongoing support. Conclusion In this analysis we have shown that significant others choose to be active participants in the cancer patient’s care and treatment by seeking out additional sources of cancer information, such as the CIS. As reflected in the volume of calls to the CIS by significant others (almost 190,000 between 1983 and 1987), we see that the diagnosis of cancer effects not only the patient, but also those individuals comprising the patient’s interpersonal network. Although the supportive role that significant others play in promoting the health and well-being of the patient has been widely documented, it is apparent that more attention needs to be given to addressing the information needs of this population. Given different types of cancers and treatment options, and the dynamic nature of information that is needed for coping with different phases of the disease, static channels of information (e.g. pamphlets), or traditional approaches to patient education (e.g., meetings with medical staff that are constrained by time) are not likely to satisfy the changing information requirements of cancer patient or their significant others [8]. Health care professionals need to be cognizant of this, and further investigation to develop interventions that can meet these changing needs is required (Table II). Longitudinal studies are needed to assess the impact of cancer on significant others over time and to determine which sources of information significant others prefer in satisfying their information needs during the course of the patient’s illness. Furthermore, we need to examine these sources of information in several dimensions, including credibility, accessibility and availability.
Table II. Information needs recommendations for practice.
of
significant
others:
Target education programs to include significant others, a well as patients Assess how information targeted to one population (signifi cant others or patients) impacts on the other Identify information resources repeatedly over time Promote others
resources and services specifically for significan
Develop a system of referrals to resources Provide sources of information beyond the doctor’s office 01 hospital Develop programs that meet changing information throughout the course of illness
need:
Recognize socioeconomic and cultural factors that impedr access to information, and develop strategies to improw communication
While physicians are generally viewed as a most credible source of medical information, their time available for answering questions may be limited. A telephone network, such as the CIS, has the advantage of being available daytime and evening hours to any individual with access to a telephone. A 1983 survey of user satisfaction with the CIS found that an overwhelming majority of respondents considered the service helpful, clear and easy to understand [18]. Thus, the doctor’s office or hospital should not be considered the only setting to address information needs of significant others. Additionally, we must find out how to reach those individuals who are in need of information, but are not calling the CIS. As noted earlier, CIS callers are a biased sample representing a larger proportion of better educated individuals than the general population. Research has demonstrated that sociodemographic characteristics, especially social class and educational background, influence doctor-patient communication [21]. Working class patients tend to hesitate more than professional and non-manual workers in requesting information from their physicians, though their desire for information is as
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great. Likewise, physicians’ social class of origin is predictive of their information-giving behavior [21]. These findings suggest, then, that lower socioeconomic segments of the population are not receiving information about illness from medical staff or from channels such as the CIS. Therefore, further attention should be given to improving these disparities in information transmittal. Since the information needs of the patient are not necessarily the same as the needs of their significant others, we must also determine how to effectively address the needs of these two populations simultaneously, and determine how interventions targeted to one population impacts on the other. As active participants in the patients’ care, it is likely that satisfying the information needs of the significant others of cancer patients will have a favorable impact on the patients’ health, as well as their own.
5
6
I 8
9 10
11
12
13
Acknowledgement
14
The authors wish to express their appreciation to Kate Duffy. Project Officer of the Cancer Information Service, for her assistance in the preparation of this article, and to the CIS telephone counselors who provide such an important service to cancer patients and their significant others.
15
References
16 17 18
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