- Email: [email protected]
Education and support needs of younger and older cancer survivors
Education and Support Needs of Younger and Older Cancer Survivors Georgia Narsavage and Eileen Romeo
This study examined the use, satisfaction with, and need for cancer education and support services in northeastern Pennsylvania. Responses of 243 younger survivors (40 to 64 years) were compared with 295 older survivors (ⱖ65 years). Programs attended and desired were related to cancer type and age. The almost 20% of respondents who had attended programs, primarily younger survivors, expressed high levels of satisfaction. Younger survivors reported non-attendance because of lack of interest. Older survivors’ non-attendance reasons included difficulty with travel (N ⫽ 259, 2 ⫽ 12.081, p ⫽ .002), no identified need for information, and dislike for time of offerings (evenings). Education/support programs should be targeted to the age of people being served, as well as incidence, prevalence, expected trajectory, and prognosis of cancer types in the service area. © 2003 Elsevier Inc. All rights reserved.
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ANCER RATES HAVE continued to rise from the late 1970s to the 1990s, but improved treatment has resulted in increasing rates of survival (Gerlach, Gambosi, & Bowen, 1990). Recognizably, risk factors for cancer such as heredity, age, and race cannot be changed, but improved survival rates provide opportunities for enhanced quality of life through education and support programs. Significant resources are expended in the United States to provide cancer education and support programs. For decades, regional cancer institutes have designed and implemented programs to educate and provide support to cancer patients and their families. A significant amount of research has focused on the effectiveness of cancer programs in improving knowledge and support, but findings are conflicting. There is evidence that educational programs can increase knowledge about cancer and provide support networks for cancer patients and families. A study by Carlsson and Strang (1998) evaluated educational and support programs for gynecologic cancer patients and their families using a quasiexperimental non-randomized methodology. Those who were able to attend (n ⫽ 36, intervention group) versus those who were not able to attend education and support programs (n ⫽ 25, control group) were compared. Initially, the intervention group was at a disadvantage in knowledge, but after the educational program sessions, they had a significantly improved level of knowledge about cancer (t ⫽ 2.397, p ⬍ .05). The intervention group also reported on the positive experience of Applied Nursing Research, Vol. 16, No. 2 (May), 2003: pp 103-109
developing mutual understanding with the other group members and advocated attendance at cancer education and support programs. Analyses of qualitative data suggest that support groups were a complement to and not a substitute for clinical provision of medical information (Carlsson & Strang, 1998). A study of women diagnosed with early stage breast cancer who were identified as having adapted to the diagnosis, presented no evidence of benefits from support group interventions (Helgeson, Cohen, Schulz, & Yasko, 1999). In contrast, other qualitative research with cancer patients and their significant others (n ⫽ 127) using grounded theory suggests that coping and confidence for living can be reinforced through sensitivity to learning needs, supportive education, and familiarity with cancer facts and figures (Grahn and Danielson, 1996). Samarel et al (1998) interviewed 70 women with breast cancer who had participated Georgia Narsavage, Associate Professor and Associate Dean for Academic Programs, Frances Payne Bolton School of Nursing, Case Western Reserve University, Cleveland, OH; Eileen Romeo, MSN, CRNP, Community Medical Center, Health Care System, Scranton, PA. Supported by the Northeast Regional Cancer Institute (NRCI). Address reprint requests to Georgia Narsavage, Frances Payne Bolton School of Nursing, Case Western Reserve University, 10900 Euclid Avenue, Cleveland, Ohio 44106-4904. E-mail: [email protected] © 2003 Elsevier Inc. All rights reserved. 0897-1897/03/1602-0005$30.00/0 doi:10.1016/S0897-1897(03)00008-9 103
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There is evidence that educational programs can increase knowledge about cancer and provide support networks for cancer patients and families.
in a social support group. The findings revealed that all participants felt positive about their participation, and almost 75% noted a change in attitude and adaptation. It is logical to consider that differences in attendance at educational and support programs could account for the differences in perceptions of benefit. Reasons for attendance and non-attendance as well as satisfaction with programs having either educational or support components should be included in evaluation of programs for cancer survivors. One study found that medical information and educational support alone did not meet the needs of cancer patients. A random telephone survey of 1,000 patients with prostate cancer who belonged to prostate cancer support groups compared perspectives on prostate cancer education and support with the perspectives of 200 urologists who treated prostate cancer patients (Crawford et al., 1997). Physicians reported providing patients with cancer information and treatment through discussion. However, patients did not recall the important cancer-related and cancer treatment information. The researchers suggest that physicians underestimate the need for and effect of support groups in caring for patients with prostate cancer.
The researchers suggest that physicians underestimate the need for and effect of support groups in caring for patients with prostate cancer.
Several qualitative researchers have examined support groups from the patient’s perspective and suggested a difference in younger and older populations (Gray, Fitch, Davis, & Phillips, 1997; Wyatt and Friedman, 1996). An examination of younger
NARSAVAGE AND ROMEO
breast cancer self-help group participants reported emotional support as well as informational and practical learning as benefits. Limitations of selfhelp support groups for this younger group included balancing the group’s purpose of developing meaningful advocacy with individual purposes for attending (Gray, Fitch, Davis, & Phillips, 1997). After studying the quality of life issues of longterm female cancer survivors with a mean age of 61, Wyatt and Friedman (1996) suggested that structured education and support groups for older survivors should also include group discussions of spirituality and philosophical views of life. Physical concerns were resolved according to these older survivors, but psychosocial and spiritual areas remained salient issues. Given the increasing number of older adults surviving cancer, there is a need to understand what factors relate to program attendance or non-attendance and satisfaction for both older and younger survivors.
Given the increasing number of older adults surviving cancer, there is a need to understand what factors relate to program attendance or nonattendance and satisfaction for both older and younger survivors.
AIMS OF THE STUDY
Cancer has been the second leading cause of death in Northeastern Pennsylvania (NEPA), an area with a large elderly population (Pennsylvania Department of Health, 1998). The Northeast Regional Cancer Institute (NRCI), a non-profit cooperative network of six hospitals in NEPA, provided educational and support programs designed to help cancer patients and their families survive and manage their illness with improved quality of life. All patients who received treatment for cancer within the network after 1996 were reported to the NRCI for follow-up. Cancer of the breast has been the primary type for women and prostate cancer as the primary site for men (Pennsylvania Department of Health, 1998). As the number of survivors increased and program funding became increasingly
EDUCATION AND SUPPORT OF CANCER SURVIVORS
limited, there was a need to target programs to the population served. Anecdotal accounts from cancer survivors in NEPA suggested that education and support services were limited. To address these concerns, this study focused on participant satisfaction with current programs, barriers to attendance, and open-ended questions that allowed survivors to identify topics of interest for future cancer education and support programs. Cancer educators in the NEPA region hypothesized that older survivors’ (ⱖ65 years of age) use, satisfaction, and need for cancer education and support programs would differ from younger survivors (40 to 64 years of age). Consequently, the NRCI funded this research as a needs assessment of the cancer survivors in the region to facilitate program planning for younger and older survivors. The study was designed to (1) identify what education and support services were being used, (2) measure satisfaction with current programs and services, and (3) identify what future programs and services were desired. METHODS
A descriptive, comparative study design was used to study older (ⱖ65) and younger (40-64) cancer survivors. The sample was obtained from a three-county area served by the NRCI and representative of individuals living in urban and rural northeast Pennsylvania. After receiving approval from the human subjects review board of the University of Scranton, surveys were mailed with a cover letter from the NRCI director to the total database of 5,985 cancer survivors maintained by NRCI for newsletter distribution. The tumor registry of NEPA was the source of the newsletter database. Data were collected for 6 weeks; responses were anonymous. The response rate was 12% with 585 survivor surveys of which 538 had complete data sets. Not unexpectedly, 130 surveys were returned indicating that recipients had died. Despite the low return rate, the available sample of 538 did include 45% younger respondents (76% female) and 55% older (52% female) survivors. It was representative of the total database in the proportion of breast (36%), prostate (18%), lung (4%), and colorectal (12%) tumors identified by respondents as their primary cancer sites. Survey questions dealt with evaluation of education programs (i.e., Survivors Symposium, Healing through Peace of Mind, or other) and support
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programs (i.e., Man to Man, Bosom Buddies, Patient to Patent, Facing Cancer Together, or other) that had been offered at least annually in the 3 years before the survey. Respondents were asked to use a 4-point Likert scale ranging from “very helpful,” “helpful,” “not at all helpful,” or “waste of time” to rate their level of satisfaction with the cancer education programs attended. If they had not attended education programs, they were asked to describe reasons for non-attendance. The first draft of our survey’s outcome items, such as “Support programs taught me how to ask for help,” were based on responses generated to the open-ended questions (“What strategies do you use to cope with being a cancer survivor?” and “What could be done to help you cope better?”) asked in the OncoLink “Computer-Based Survey of Cancer Survivors” (Fawcett, 1995). Our quantitative rating scale items were selected from the OncoLink responses consistent with Neuman’s framework: physical, psychological (emotional), sociocultural, developmental (intellectual), and spiritual dimensions. A nurse, a psychologist, and a cancer survivor reviewed our survey for content, clarity, and completeness. Their suggestions were incorporated into the final format. Outcomes of support programs were rated by using a 5-point Likert scale from “strongly agree” to “strongly disagree.” Open-ended questions were then used to elicit problem areas, perceived needs for future programs and services, and programs that would be recommended to other cancer survivors. Mailed questionnaires thus had one page of demographic items and three pages of quantitative rating scales along with open-ended questions. An original survey questionnaire was distributed on the OncoLink network (1995). Only 30 cancer survivors responded, limiting the generalizability of the results. Internal consistency for our survey was as follows: (1) “use of education programs” (12 items, Cronbach’s alpha 0.88), (2) “participation in support programs” (7 items, Cronbach’s alpha 0.76), and “benefit of programs” (10 items, Cronbach’s alpha 0.99). Open-ended questions were content analyzed to identify reasons for attendance, non-attendance, and perceived future program needs. Interpretation of this content was guided by Neuman’s theory of adaptation to stress using the quantitative survey components of physical, psychological (emo-
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Table 1. Significantly Different Reasons for Younger and Older Adults Non-Attendance at Programs Reason
Education Don’t need education program Cannot travel No program in area Not interested in programs offered Support Don’t need support program Cost Cannot travel Not interested in programs offered
Younger n (%)
Older n (%)
Significant Difference (chi-square)
48 (21.9) 8 (14.7) 19 (8.7) 34 (15.5)
101 (41.2) 23 (16.3) 16 (6.6) 26 (10.7)
p ⬍ 0.0001 p ⫽ .002 p ⫽ .018 p ⫽ .006
44 (28.4) 4 (2.6) 6 (3.9) 30 (13.4)
93 (45.6) 4 (1.1) 20 (9.9) 20 (9.9)
p ⬍ .002 NS p ⫽ .046 p ⫽ .014
tional), social, and developmental (intellectual), plus the spiritual dimension. Adaptation theory was selected to develop and interpret survivor responses based on the assumption that perception of program needs related to the stress of surviving cancer. Cancer survivors’ responses to the type of education and support programs they would like to have available and would recommend to others were thus summarized and categorized. RESULTS
Overall, 87% of the respondents had completed secondary school and 49% earned less than $25,000 annually. Treatments for their cancers were reported as 56% surgical, 61% radiation, and 29% chemotherapy. The 243 younger (⬍65 years of age) respondents were women (76%), averaged 52 (⫾10) years of age, and had a mean survival since diagnosis of 6 (⫾4) years. Breast (53%) and lymphoma (10%) were their most frequent diagnosis. The 295 older participants (ⱖ65 years) were 52% women, averaged 74 (⫾6) years of age, and had a mean survival of 8 (⫾6) years. In older participants, the most frequent cancer types were breast (47%) for women and prostate (15%) and colorectal (10%) for men. The majority of respondents were white, reflecting the population of NEPA. Younger survivors were significantly more likely to have attended support programs (2 ⫽ 14.347, p ⬍ .0001), cancer education programs (2 ⫽ 5.571, p ⫽ .018), and the survivor’s symposium (2 ⫽ 3.772, p ⫽ .052). However, less than one in five respondents reported attendance at any program. For those who attended NRCI programs, 95% of both younger and older survivors rated the
Survivor’s Symposium designed to provide education on living with cancer and Healing Through Peace of Mind focusing on complementary therapy as helpful to very helpful. Bosom Buddies, a support program for women with breast cancer, was used more by younger (70%) than older (30%) survivors, although there was similar incidence of breast cancer diagnosis in both groups (53.3 % younger v 46.7% older). Of non-attendees, only 6% of both younger and older groups identified “no program in area” or “cost” as significant reasons for non-attendance. Younger survivors were more likely to identify reasons for not using support programs as “don’t need one” (2 ⫽ 24.921, p ⫽ .0001) as well as “not interested” (2 ⫽ 19.773, p ⫽ .0001). Man to Man, a program targeting persons with prostate cancer, was more frequently attended by older versus younger male survivors—an expected finding in that more older men have prostate cancer (Pennsylvania Department of Health, 1998). There was a significant relationship with the cancer type and the support program used (r ⫽ 0.315, p ⫽ .04). Older survivors identified reasons for non-attendance as not needing a support program, difficulty with travel (2 ⫽ 12.466, p ⫽. 002), and having received all needed information from the doctor or nurse. Time of offerings (evenings) was another reason older survivors did not attend programs. Reasons for non-attendance at cancer education and support programs that were significantly different for older and younger survivors are identified in Table 1. Open-ended responses identified additional reasons for non-attendance at education programs as having received essential facts from
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Table 2. Programs Cancer Survivors Would Like to Have Available % of 116 Responses
44% 32% 7% 7% 7% 3%
Categories of programs needed described in response to question: “Are there any Cancer Education and Support Programs that you would like to have available?” (with sample actual responses)
Social needs: having available support groups and consideration in scheduling programs Intellectual needs: cancer specific education, age specific programs, nutritional information, new developments in treatment and management Emotional needs: addressing coping, return to work issues and dealing with insurance companies Physical needs: women’s health issues, fertility and genetic screening Holistic needs: alternative and complementary therapy Spiritual needs: faith.
health care providers and time of programs (evening) as barriers for older survivors. Respondents were asked, “Are there any cancer education and support program that you would like to have available?“ and ”What cancer education and support programs would you recommend to others?‘ Results are summarized in Tables 2 and 3. There were differences in desired and recommended programs categorized by the dimensions of the study’s framework: social dimension (44% desired/45% recommended) intellectual dimension (32% desired/15% recommended), emotional dimension (7% desired / 5% recommended) physical dimension (7% desired/ 1% recommended), and spiritual dimension (3% desired/ 16% recommended). A holistic theme with alternative and complementary therapy needs emerged as a sixth component with 7% requesting programs with alternative and complementary therapy and 18% recommending such programs to others. Major limitations of this survey were that the findings constituted a retrospective analysis from programs conducted over a 3-year period and were limited to a three-county area in Northeast Penn-
sylvania. The response rate was less than 12% and may reflect bias toward those who were not satisfied with the NRCI programs or only those most interested in programs. DISCUSSION AND CLINICAL IMPLICATIONS
As expected, self-reported program attendance and reasons for non-attendance of cancer survivors in NEPA differed by survivor age. However, of the 538 respondents, only a minority had attended education (11 % of respondents) and support (20%) program offerings. Those who had attended the programs rated them as valuable. Admittedly, these data may represent a sample biased toward those who did not like the education and support program offerings. The findings are nevertheless useful in identifying the reasons for non-attendance along with the desired program topics and the programs that attendees would recommend to other cancer survivors. Major reasons for non-attendance suggest that a majority of survivor respondents do not perceive a need to attend or recognize potential benefits of education and support programs. Also, older indi-
Table 3. Programs Cancer Survivors Would Recommend to Others Dealing With Cancer
% of 116 Responses
45% 18% 16% 15% 5% 1%
Categories of programs described in response to question: “What types of Cancer Education and Support Programs would you recommend to others dealing with cancer?” (with sample actual responses)
Social support programs: attendance at support groups, communication with other survivors, and provision of financial and legal assistance Alternative/complementary therapy programs as use of herbs, acupuncture, and mind/body healing i.e., biofeedback, art, dance and manual healing therapies Spiritual support described as prayer and faith. Intellectual programs: research updates, public education, risk factors, and NRCI survivor symposium Emotional support programs in coping methods and direct communication with professionals Physical support programs such as sexuality counseling.
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viduals expressed confidence in sufficiency of information supplied by health care providers. Health care providers could be key links to attendance by helping patients understand a program’s objectives and desired outcomes. Nurses, physicians, and other health care providers could explain the potential benefits of program attendance and how support groups that focus on specific cancer types can provide information from other cancer survivors when most needed—after discharge. Additionally, nurses are ideally positioned to educate cancer survivors on the need to evaluate quality of information, especially as the public increasingly uses the unregulated Internet as an information source.
participate from any location (Van Scoy-Mosher & Schimmel, 1998). Expanding the network to an on-line Internet chat room for those who attend the programs could also provide opportunities for continued networking after programs end.
Major reasons for non-attendance suggest that a majority of survivor respondents do not perceive a need to attend or recognize potential benefits of education and support programs.
This study supports previous research in that the expressed need for informational cancer education programs ranked second to social support for cancer survivors. The most frequently recommended support programs dealt with alternative/complementary therapy. Complementary therapies, exploring beliefs and spiritual support, and suggesting alternatives or sharing beliefs without imposing values can be explored for programs to meet the spiritual dimension. One example of an holistic care program was centered on the use of music as a vehicle for expression of emotion (Tobia, Shamos, Harper, Walch, & Currie, 1999). Reflection, relaxation, communication, and enjoyment had strong positive evaluations supporting the role music can play in helping survivors and families explore reactions to cancer. As described by Ferrell and Dow (1996) cancer survivorship conveys themes of “rendering of the old life (i.e., giving up the life that preceded cancer diagnosis), transition to a different life, and finally, living an altered life” (p. 77). Nurses are in an ideal position to develop the art and science of caring for cancer survivors through cancer education and support programs in areas such as stress management, health promotion, relaxation training, and behavior modification. Finally, future program planning can be improved by tailoring programs for younger and older survivors. Epidemiological information such as the age of people being served, as well as the incidence, prevalence, expected trajectory, and survival rate for cancers in the target population could
An important finding was that older survivors perceived evening scheduling (after dark) and distance as barriers. Future programs should examine remedies to distance and time barriers for educational programming. The mean time of surviving cancer for respondents in this study was greater than 6 years, more than double that of respondents reported in previous studies (Gerlach, Gambosi, & Bowen, 1990; Carlsson & Strang, 1998). Longterm survivors’ continuing need for support has implications for the need to develop a network for peer communication of information and emotional support, considering limitations of cost and time constraints (Fernsler & Manchester, 1997). Development of inpatient oncology educational and support programs could provide necessary education and support to those who have a barrier in attending outpatient programs. Inpatient and outpatient programs, especially during the frequent oncology treatment sessions, have been effective in providing education and support for patients and families (Grassman, 1993). A new concept in support, “The Group Room” is a syndicated weekly radio talk show that allows patients, families, and friends to
Development of inpatient oncology educational and support programs could provide necessary education and support to those who have a barrier in attending outpatient programs.
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be helpful in program development. Marketing of programs should focus on unique interests such as younger survivors’ need for expedient return to work and on significant barriers such as older survivors’ difficulty with travel and reluctance to attend evening programs. Future program evaluation and research should continue comparison of the
effect of educational programs and support groups on younger and older cancer survivors. ACKNOWLEDGMENT The authors thank Patricia Lawless, MHA, Program Director, Northeast Regional Cancer Institute (NRCI), and Ellen Nagy, Vice President Operations, NRCI, for their assistance in the development and implementation of the study.
REFERENCES Carlsson, M.E., & Strang, P.M. (1998). Educational support programme for gynaecological cancer patients and their families. Acta Oncology, 37(3), 269-275. Crawford, E.D., Bennett, C.L., Stone, N.N., Knight, S.J., DeAntoni, E., Sharp, L., Garnick, M.B., & Porterfield, H.A. (1997). Comparison of perspectives on prostate cancer: Analyses of survey data. Urology, 50(3), 366-372. Fawcett, J. (1995). Using the Internet for data collection. An innovative electronic strategy. Computers In Nursing, 13, 273279. Fernsler, J.I., & Manchester, L.J. (1997). Evaluation of a computer-based cancer support network. Cancer Practitioner, 5(1), 46-51. Ferrell, B.R., & Dow, K.H. (1996). Portraits of cancer survivorship: A glimpse through the lens of survivors’ eyes. Cancer Practitioner, 4, 76-80. Gerlach, R.W., Gambosi, J.R., & Bowen, R.H. (1990). Cancer survivors’ needs reported by survivors and their families. Journal of Cancer Education, 5(1), 63-70. Gray, R., Fitch, M., Davis, C., & Phillips, C. (1997). A qualitative study of breast cancer self-help groups. Psychooncology, 6(4), 279-289. Grahn, G., & Danielson, M. (1996). Coping with the cancer experience: II. Evaluating an education and support program for cancer patients and their significant others. European Journal of Cancer Care, 5(3), 182-187.
Helgeson, V.S., Cohen, S., Schulz, R., & Yasko, J. (1999). Education and peer discussion group interventions and adjustment to breast cancer. Archives of General Psychology, 56(4), 340-347. Neuman, B.M. (1995). The Neuman Systems Model. Appleton & Lange, Norwalk, CT. Pennsylvania Department of Health (1998). Number of observed and expected cancer cases by sex and primary site, 1994-1998; Lackawanna County Health Profile. Available at: http://www.health.state.pa.us/pdf/hpa/stats/profiles98/lacka. pdf and http://webserver.health.state.pa.us/health/lib/health/ Pennsylvania_cancer.pdf. Accessed May 29, 2002. Samarel, N., Fawcett, J., Krippendorf, K., Piacentino, J.C., Eliasof, B., Hughes, P., Kowitdki, C., & Ziegler, E. (1998). Women’s perceptions of group support and adaptation to breast cancer. Journal of Advanced Nursing, 28, 1259-1268. Tobia, D.M., Shamos, E.F., Harper, E.M., Walch, S.E., & Currie, J.L. (1999). The benefits of group music at the 1996 music weekend for women with cancer. Journal of Cancer Education, 14(2), 115-119. Van Scoy-Mosher, M.B., & Schimmel, S.R. (1998). The Group Room: A syndicated radio cancer support group. Oncologist, 3(1), 61-63. Wyatt, G., & Friedman, L.L. (1996). Long-term female cancer survivors: Quality of life issues and clinical implications. Cancer Nursing, 19(1), 1-7.
This study examined the use, satisfaction with, and need for cancer education and support services in northeastern Pennsylvania. Responses of 243 younger survivors (40 to 64 years) were compared with 295 older survivors (ⱖ65 years). Programs attended and desired were related to cancer type and age. The almost 20% of respondents who had attended programs, primarily younger survivors, expressed high levels of satisfaction. Younger survivors reported non-attendance because of lack of interest. Older survivors’ non-attendance reasons included difficulty with travel (N ⫽ 259, 2 ⫽ 12.081, p ⫽ .002), no identified need for information, and dislike for time of offerings (evenings). Education/support programs should be targeted to the age of people being served, as well as incidence, prevalence, expected trajectory, and prognosis of cancer types in the service area. © 2003 Elsevier Inc. All rights reserved.
C
ANCER RATES HAVE continued to rise from the late 1970s to the 1990s, but improved treatment has resulted in increasing rates of survival (Gerlach, Gambosi, & Bowen, 1990). Recognizably, risk factors for cancer such as heredity, age, and race cannot be changed, but improved survival rates provide opportunities for enhanced quality of life through education and support programs. Significant resources are expended in the United States to provide cancer education and support programs. For decades, regional cancer institutes have designed and implemented programs to educate and provide support to cancer patients and their families. A significant amount of research has focused on the effectiveness of cancer programs in improving knowledge and support, but findings are conflicting. There is evidence that educational programs can increase knowledge about cancer and provide support networks for cancer patients and families. A study by Carlsson and Strang (1998) evaluated educational and support programs for gynecologic cancer patients and their families using a quasiexperimental non-randomized methodology. Those who were able to attend (n ⫽ 36, intervention group) versus those who were not able to attend education and support programs (n ⫽ 25, control group) were compared. Initially, the intervention group was at a disadvantage in knowledge, but after the educational program sessions, they had a significantly improved level of knowledge about cancer (t ⫽ 2.397, p ⬍ .05). The intervention group also reported on the positive experience of Applied Nursing Research, Vol. 16, No. 2 (May), 2003: pp 103-109
developing mutual understanding with the other group members and advocated attendance at cancer education and support programs. Analyses of qualitative data suggest that support groups were a complement to and not a substitute for clinical provision of medical information (Carlsson & Strang, 1998). A study of women diagnosed with early stage breast cancer who were identified as having adapted to the diagnosis, presented no evidence of benefits from support group interventions (Helgeson, Cohen, Schulz, & Yasko, 1999). In contrast, other qualitative research with cancer patients and their significant others (n ⫽ 127) using grounded theory suggests that coping and confidence for living can be reinforced through sensitivity to learning needs, supportive education, and familiarity with cancer facts and figures (Grahn and Danielson, 1996). Samarel et al (1998) interviewed 70 women with breast cancer who had participated Georgia Narsavage, Associate Professor and Associate Dean for Academic Programs, Frances Payne Bolton School of Nursing, Case Western Reserve University, Cleveland, OH; Eileen Romeo, MSN, CRNP, Community Medical Center, Health Care System, Scranton, PA. Supported by the Northeast Regional Cancer Institute (NRCI). Address reprint requests to Georgia Narsavage, Frances Payne Bolton School of Nursing, Case Western Reserve University, 10900 Euclid Avenue, Cleveland, Ohio 44106-4904. E-mail: [email protected] © 2003 Elsevier Inc. All rights reserved. 0897-1897/03/1602-0005$30.00/0 doi:10.1016/S0897-1897(03)00008-9 103
104
There is evidence that educational programs can increase knowledge about cancer and provide support networks for cancer patients and families.
in a social support group. The findings revealed that all participants felt positive about their participation, and almost 75% noted a change in attitude and adaptation. It is logical to consider that differences in attendance at educational and support programs could account for the differences in perceptions of benefit. Reasons for attendance and non-attendance as well as satisfaction with programs having either educational or support components should be included in evaluation of programs for cancer survivors. One study found that medical information and educational support alone did not meet the needs of cancer patients. A random telephone survey of 1,000 patients with prostate cancer who belonged to prostate cancer support groups compared perspectives on prostate cancer education and support with the perspectives of 200 urologists who treated prostate cancer patients (Crawford et al., 1997). Physicians reported providing patients with cancer information and treatment through discussion. However, patients did not recall the important cancer-related and cancer treatment information. The researchers suggest that physicians underestimate the need for and effect of support groups in caring for patients with prostate cancer.
The researchers suggest that physicians underestimate the need for and effect of support groups in caring for patients with prostate cancer.
Several qualitative researchers have examined support groups from the patient’s perspective and suggested a difference in younger and older populations (Gray, Fitch, Davis, & Phillips, 1997; Wyatt and Friedman, 1996). An examination of younger
NARSAVAGE AND ROMEO
breast cancer self-help group participants reported emotional support as well as informational and practical learning as benefits. Limitations of selfhelp support groups for this younger group included balancing the group’s purpose of developing meaningful advocacy with individual purposes for attending (Gray, Fitch, Davis, & Phillips, 1997). After studying the quality of life issues of longterm female cancer survivors with a mean age of 61, Wyatt and Friedman (1996) suggested that structured education and support groups for older survivors should also include group discussions of spirituality and philosophical views of life. Physical concerns were resolved according to these older survivors, but psychosocial and spiritual areas remained salient issues. Given the increasing number of older adults surviving cancer, there is a need to understand what factors relate to program attendance or non-attendance and satisfaction for both older and younger survivors.
Given the increasing number of older adults surviving cancer, there is a need to understand what factors relate to program attendance or nonattendance and satisfaction for both older and younger survivors.
AIMS OF THE STUDY
Cancer has been the second leading cause of death in Northeastern Pennsylvania (NEPA), an area with a large elderly population (Pennsylvania Department of Health, 1998). The Northeast Regional Cancer Institute (NRCI), a non-profit cooperative network of six hospitals in NEPA, provided educational and support programs designed to help cancer patients and their families survive and manage their illness with improved quality of life. All patients who received treatment for cancer within the network after 1996 were reported to the NRCI for follow-up. Cancer of the breast has been the primary type for women and prostate cancer as the primary site for men (Pennsylvania Department of Health, 1998). As the number of survivors increased and program funding became increasingly
EDUCATION AND SUPPORT OF CANCER SURVIVORS
limited, there was a need to target programs to the population served. Anecdotal accounts from cancer survivors in NEPA suggested that education and support services were limited. To address these concerns, this study focused on participant satisfaction with current programs, barriers to attendance, and open-ended questions that allowed survivors to identify topics of interest for future cancer education and support programs. Cancer educators in the NEPA region hypothesized that older survivors’ (ⱖ65 years of age) use, satisfaction, and need for cancer education and support programs would differ from younger survivors (40 to 64 years of age). Consequently, the NRCI funded this research as a needs assessment of the cancer survivors in the region to facilitate program planning for younger and older survivors. The study was designed to (1) identify what education and support services were being used, (2) measure satisfaction with current programs and services, and (3) identify what future programs and services were desired. METHODS
A descriptive, comparative study design was used to study older (ⱖ65) and younger (40-64) cancer survivors. The sample was obtained from a three-county area served by the NRCI and representative of individuals living in urban and rural northeast Pennsylvania. After receiving approval from the human subjects review board of the University of Scranton, surveys were mailed with a cover letter from the NRCI director to the total database of 5,985 cancer survivors maintained by NRCI for newsletter distribution. The tumor registry of NEPA was the source of the newsletter database. Data were collected for 6 weeks; responses were anonymous. The response rate was 12% with 585 survivor surveys of which 538 had complete data sets. Not unexpectedly, 130 surveys were returned indicating that recipients had died. Despite the low return rate, the available sample of 538 did include 45% younger respondents (76% female) and 55% older (52% female) survivors. It was representative of the total database in the proportion of breast (36%), prostate (18%), lung (4%), and colorectal (12%) tumors identified by respondents as their primary cancer sites. Survey questions dealt with evaluation of education programs (i.e., Survivors Symposium, Healing through Peace of Mind, or other) and support
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programs (i.e., Man to Man, Bosom Buddies, Patient to Patent, Facing Cancer Together, or other) that had been offered at least annually in the 3 years before the survey. Respondents were asked to use a 4-point Likert scale ranging from “very helpful,” “helpful,” “not at all helpful,” or “waste of time” to rate their level of satisfaction with the cancer education programs attended. If they had not attended education programs, they were asked to describe reasons for non-attendance. The first draft of our survey’s outcome items, such as “Support programs taught me how to ask for help,” were based on responses generated to the open-ended questions (“What strategies do you use to cope with being a cancer survivor?” and “What could be done to help you cope better?”) asked in the OncoLink “Computer-Based Survey of Cancer Survivors” (Fawcett, 1995). Our quantitative rating scale items were selected from the OncoLink responses consistent with Neuman’s framework: physical, psychological (emotional), sociocultural, developmental (intellectual), and spiritual dimensions. A nurse, a psychologist, and a cancer survivor reviewed our survey for content, clarity, and completeness. Their suggestions were incorporated into the final format. Outcomes of support programs were rated by using a 5-point Likert scale from “strongly agree” to “strongly disagree.” Open-ended questions were then used to elicit problem areas, perceived needs for future programs and services, and programs that would be recommended to other cancer survivors. Mailed questionnaires thus had one page of demographic items and three pages of quantitative rating scales along with open-ended questions. An original survey questionnaire was distributed on the OncoLink network (1995). Only 30 cancer survivors responded, limiting the generalizability of the results. Internal consistency for our survey was as follows: (1) “use of education programs” (12 items, Cronbach’s alpha 0.88), (2) “participation in support programs” (7 items, Cronbach’s alpha 0.76), and “benefit of programs” (10 items, Cronbach’s alpha 0.99). Open-ended questions were content analyzed to identify reasons for attendance, non-attendance, and perceived future program needs. Interpretation of this content was guided by Neuman’s theory of adaptation to stress using the quantitative survey components of physical, psychological (emo-
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Table 1. Significantly Different Reasons for Younger and Older Adults Non-Attendance at Programs Reason
Education Don’t need education program Cannot travel No program in area Not interested in programs offered Support Don’t need support program Cost Cannot travel Not interested in programs offered
Younger n (%)
Older n (%)
Significant Difference (chi-square)
48 (21.9) 8 (14.7) 19 (8.7) 34 (15.5)
101 (41.2) 23 (16.3) 16 (6.6) 26 (10.7)
p ⬍ 0.0001 p ⫽ .002 p ⫽ .018 p ⫽ .006
44 (28.4) 4 (2.6) 6 (3.9) 30 (13.4)
93 (45.6) 4 (1.1) 20 (9.9) 20 (9.9)
p ⬍ .002 NS p ⫽ .046 p ⫽ .014
tional), social, and developmental (intellectual), plus the spiritual dimension. Adaptation theory was selected to develop and interpret survivor responses based on the assumption that perception of program needs related to the stress of surviving cancer. Cancer survivors’ responses to the type of education and support programs they would like to have available and would recommend to others were thus summarized and categorized. RESULTS
Overall, 87% of the respondents had completed secondary school and 49% earned less than $25,000 annually. Treatments for their cancers were reported as 56% surgical, 61% radiation, and 29% chemotherapy. The 243 younger (⬍65 years of age) respondents were women (76%), averaged 52 (⫾10) years of age, and had a mean survival since diagnosis of 6 (⫾4) years. Breast (53%) and lymphoma (10%) were their most frequent diagnosis. The 295 older participants (ⱖ65 years) were 52% women, averaged 74 (⫾6) years of age, and had a mean survival of 8 (⫾6) years. In older participants, the most frequent cancer types were breast (47%) for women and prostate (15%) and colorectal (10%) for men. The majority of respondents were white, reflecting the population of NEPA. Younger survivors were significantly more likely to have attended support programs (2 ⫽ 14.347, p ⬍ .0001), cancer education programs (2 ⫽ 5.571, p ⫽ .018), and the survivor’s symposium (2 ⫽ 3.772, p ⫽ .052). However, less than one in five respondents reported attendance at any program. For those who attended NRCI programs, 95% of both younger and older survivors rated the
Survivor’s Symposium designed to provide education on living with cancer and Healing Through Peace of Mind focusing on complementary therapy as helpful to very helpful. Bosom Buddies, a support program for women with breast cancer, was used more by younger (70%) than older (30%) survivors, although there was similar incidence of breast cancer diagnosis in both groups (53.3 % younger v 46.7% older). Of non-attendees, only 6% of both younger and older groups identified “no program in area” or “cost” as significant reasons for non-attendance. Younger survivors were more likely to identify reasons for not using support programs as “don’t need one” (2 ⫽ 24.921, p ⫽ .0001) as well as “not interested” (2 ⫽ 19.773, p ⫽ .0001). Man to Man, a program targeting persons with prostate cancer, was more frequently attended by older versus younger male survivors—an expected finding in that more older men have prostate cancer (Pennsylvania Department of Health, 1998). There was a significant relationship with the cancer type and the support program used (r ⫽ 0.315, p ⫽ .04). Older survivors identified reasons for non-attendance as not needing a support program, difficulty with travel (2 ⫽ 12.466, p ⫽. 002), and having received all needed information from the doctor or nurse. Time of offerings (evenings) was another reason older survivors did not attend programs. Reasons for non-attendance at cancer education and support programs that were significantly different for older and younger survivors are identified in Table 1. Open-ended responses identified additional reasons for non-attendance at education programs as having received essential facts from
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Table 2. Programs Cancer Survivors Would Like to Have Available % of 116 Responses
44% 32% 7% 7% 7% 3%
Categories of programs needed described in response to question: “Are there any Cancer Education and Support Programs that you would like to have available?” (with sample actual responses)
Social needs: having available support groups and consideration in scheduling programs Intellectual needs: cancer specific education, age specific programs, nutritional information, new developments in treatment and management Emotional needs: addressing coping, return to work issues and dealing with insurance companies Physical needs: women’s health issues, fertility and genetic screening Holistic needs: alternative and complementary therapy Spiritual needs: faith.
health care providers and time of programs (evening) as barriers for older survivors. Respondents were asked, “Are there any cancer education and support program that you would like to have available?“ and ”What cancer education and support programs would you recommend to others?‘ Results are summarized in Tables 2 and 3. There were differences in desired and recommended programs categorized by the dimensions of the study’s framework: social dimension (44% desired/45% recommended) intellectual dimension (32% desired/15% recommended), emotional dimension (7% desired / 5% recommended) physical dimension (7% desired/ 1% recommended), and spiritual dimension (3% desired/ 16% recommended). A holistic theme with alternative and complementary therapy needs emerged as a sixth component with 7% requesting programs with alternative and complementary therapy and 18% recommending such programs to others. Major limitations of this survey were that the findings constituted a retrospective analysis from programs conducted over a 3-year period and were limited to a three-county area in Northeast Penn-
sylvania. The response rate was less than 12% and may reflect bias toward those who were not satisfied with the NRCI programs or only those most interested in programs. DISCUSSION AND CLINICAL IMPLICATIONS
As expected, self-reported program attendance and reasons for non-attendance of cancer survivors in NEPA differed by survivor age. However, of the 538 respondents, only a minority had attended education (11 % of respondents) and support (20%) program offerings. Those who had attended the programs rated them as valuable. Admittedly, these data may represent a sample biased toward those who did not like the education and support program offerings. The findings are nevertheless useful in identifying the reasons for non-attendance along with the desired program topics and the programs that attendees would recommend to other cancer survivors. Major reasons for non-attendance suggest that a majority of survivor respondents do not perceive a need to attend or recognize potential benefits of education and support programs. Also, older indi-
Table 3. Programs Cancer Survivors Would Recommend to Others Dealing With Cancer
% of 116 Responses
45% 18% 16% 15% 5% 1%
Categories of programs described in response to question: “What types of Cancer Education and Support Programs would you recommend to others dealing with cancer?” (with sample actual responses)
Social support programs: attendance at support groups, communication with other survivors, and provision of financial and legal assistance Alternative/complementary therapy programs as use of herbs, acupuncture, and mind/body healing i.e., biofeedback, art, dance and manual healing therapies Spiritual support described as prayer and faith. Intellectual programs: research updates, public education, risk factors, and NRCI survivor symposium Emotional support programs in coping methods and direct communication with professionals Physical support programs such as sexuality counseling.
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viduals expressed confidence in sufficiency of information supplied by health care providers. Health care providers could be key links to attendance by helping patients understand a program’s objectives and desired outcomes. Nurses, physicians, and other health care providers could explain the potential benefits of program attendance and how support groups that focus on specific cancer types can provide information from other cancer survivors when most needed—after discharge. Additionally, nurses are ideally positioned to educate cancer survivors on the need to evaluate quality of information, especially as the public increasingly uses the unregulated Internet as an information source.
participate from any location (Van Scoy-Mosher & Schimmel, 1998). Expanding the network to an on-line Internet chat room for those who attend the programs could also provide opportunities for continued networking after programs end.
Major reasons for non-attendance suggest that a majority of survivor respondents do not perceive a need to attend or recognize potential benefits of education and support programs.
This study supports previous research in that the expressed need for informational cancer education programs ranked second to social support for cancer survivors. The most frequently recommended support programs dealt with alternative/complementary therapy. Complementary therapies, exploring beliefs and spiritual support, and suggesting alternatives or sharing beliefs without imposing values can be explored for programs to meet the spiritual dimension. One example of an holistic care program was centered on the use of music as a vehicle for expression of emotion (Tobia, Shamos, Harper, Walch, & Currie, 1999). Reflection, relaxation, communication, and enjoyment had strong positive evaluations supporting the role music can play in helping survivors and families explore reactions to cancer. As described by Ferrell and Dow (1996) cancer survivorship conveys themes of “rendering of the old life (i.e., giving up the life that preceded cancer diagnosis), transition to a different life, and finally, living an altered life” (p. 77). Nurses are in an ideal position to develop the art and science of caring for cancer survivors through cancer education and support programs in areas such as stress management, health promotion, relaxation training, and behavior modification. Finally, future program planning can be improved by tailoring programs for younger and older survivors. Epidemiological information such as the age of people being served, as well as the incidence, prevalence, expected trajectory, and survival rate for cancers in the target population could
An important finding was that older survivors perceived evening scheduling (after dark) and distance as barriers. Future programs should examine remedies to distance and time barriers for educational programming. The mean time of surviving cancer for respondents in this study was greater than 6 years, more than double that of respondents reported in previous studies (Gerlach, Gambosi, & Bowen, 1990; Carlsson & Strang, 1998). Longterm survivors’ continuing need for support has implications for the need to develop a network for peer communication of information and emotional support, considering limitations of cost and time constraints (Fernsler & Manchester, 1997). Development of inpatient oncology educational and support programs could provide necessary education and support to those who have a barrier in attending outpatient programs. Inpatient and outpatient programs, especially during the frequent oncology treatment sessions, have been effective in providing education and support for patients and families (Grassman, 1993). A new concept in support, “The Group Room” is a syndicated weekly radio talk show that allows patients, families, and friends to
Development of inpatient oncology educational and support programs could provide necessary education and support to those who have a barrier in attending outpatient programs.
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be helpful in program development. Marketing of programs should focus on unique interests such as younger survivors’ need for expedient return to work and on significant barriers such as older survivors’ difficulty with travel and reluctance to attend evening programs. Future program evaluation and research should continue comparison of the
effect of educational programs and support groups on younger and older cancer survivors. ACKNOWLEDGMENT The authors thank Patricia Lawless, MHA, Program Director, Northeast Regional Cancer Institute (NRCI), and Ellen Nagy, Vice President Operations, NRCI, for their assistance in the development and implementation of the study.
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