Journal of Cancer Education
ISSN: 0885-8195 (Print) 1543-0154 (Online) Journal homepage: http://www.tandfonline.com/loi/hjce20
An instrument for measuring cancer patients’ preferences for support groups Constance M. Smoczyk PhD , Weimo Zhu PhD & Marianmne H. Whatley PhD To cite this article: Constance M. Smoczyk PhD , Weimo Zhu PhD & Marianmne H. Whatley PhD (1992) An instrument for measuring cancer patients’ preferences for support groups, Journal of Cancer Education, 7:3, 267-279 To link to this article: http://dx.doi.org/10.1080/08858199209528178
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J. Cancer Education. Vol. 7, No. 3, pp. 267-279, 1992 Printed in the U.S.A. Pergamon Press Ltd.
0885-8195/92 S5.00 + .00 © 1992 American Association for Cancer Education
AN INSTRUMENT FOR MEASURING CANCER PATIENTS' PREFERENCES FOR SUPPORT GROUPS CONSTANCE M. SMOCZYK, PhD*; WEIMO ZHU, MARIANMNE H. WHATLEY, PhD‡
PhD†;
Abstract —The purpose of this study was to develop a valid and reliable instrument to assess cancer patients' preferences for all types of social support and organizational features of cancer support groups. The content of the instrument was the result of a detailed analysis of four resources: (1) literature relating to cancer support group interventions, (2) program materials from existing groups, (3) interviews with individuals who developed or directed groups, and (4) interviews with patients who have participated in cancer support groups. A jury of six experts was used to establish content validity of the instrument. The reliability of the instrument was examined by measuring a sample of 258 cancer patients. The reliability coefficients of the instrument were all above .80, except for two types of social support (instrumental and informational-educational), which were .72 and .78, respectively. It was concluded that the instrument produces valid and reliable measurements of cancer patients' preferences for cancer support groups.
INTRODUCTION Cancer support groups have grown increasingly prominent in the health field as medical professionals have become more cognizant of the benefits that group intervention can have on adjustment to disease. Previous research1-2 suggests that cancer support groups are generally satisfying to participants and that they can be used to create a new support system for an individual, strengthen an existing one, or train a person on how to strengthen his or her personal support network.3 Support group interventions create opportunities for support, participative learning, and empowerment4 by providing important types of social support. Although there are many different types of social support, most fall into four wide-ranging categories5: Emotional, Informational, Appraisal, and Instrumental, which are illustrated in Table 1. Other
important sources for deriving these important types of social support include the natural network of spouse, family, friends, coworkers, and health care providers. Some of the many reported benefits of participating in a cancer support group include improved psychosocial functioning,6 decreased depression and anxiety, and improvement in personal habits, interpersonal problems, and treatment problems.7 Recent evidence also suggests that active participation in support groups may positively affect immunological responses8 and increased survival rates.9 Overall, it is estimated that only 10% of cancer patients join a support group.10 Can-
Table 1. Type of social support Type of support
Emotional *Madison, WI. † Assistant Professor, Health, Physical Education and Appraisal Recreation, Wayne State University, Detroit, Michigan. ‡Professor, Curriculum and Instruction, University of Informational Wisconsin, Madison, WI. Reprint requests to: Weimo Zhu, PhD, 257 Matthaei Instrumental Building, Health, PE & Recreation, Wayne State University, Detroit, MI 48202.
267
Content of supportive act Esteem, affect, trust, concern, listening Affirmation, feedback, social comparison Advice, suggestion, directives, information Aid in kind, money, labor, time, modifying environment
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cer patients most likely to participate in a group intervention are white females of middle to upper socioeconomic status.11 Men, minorities, and working-class individuals are much less likely to participate in a group,' although there is some indication that men will participate in groups that encourage spousal participation and focus on providing informational rather than emotional types of support. Although the majority of cancer patients who do participate in existing groups appear satisfied with their experiences, some findings show dissatisfaction with the types of support provided by the groups. There also appears to be dissatisfaction with the organizational features of these groups, such as processes, formats, and leadership. For example, Taylor et al1 surveyed a large number of cancer patients and found that 35% were critical of one or more aspects of the groups: groups were too large, topics were too narrow, too much discussion of feelings, and a format that was insufficiently educational. These investigations also found that those who dropped out of the groups voiced specific objections to the groups' format and structure, 52% said the group did not meet their expectations. Support groups may not be helpful or appealing to all cancer patients, but existing evidence indicates their potential to reach a much larger cancer patient population while better serving the psychosocial needs of the population to whom they currently appear. To date, cancer support groups have been developed primarily from the perspective of the individual creating the group, rather than from the patients' perspectives. Yet cancer patients have their own unique perceptions of the types of social support that they would find most helpful within the context of a support group setting and their own personal preferences for organizational features that they would find most comfortable for delivering important types of support. And these perspectives may not coincide with those of individuals responsible for developing groups. Taylor et al1 state that by virtue of thenshared condition, cancer patients may have a better idea of the types of support and orga-
nizational feature that are most helpful to other cancer patients. Patients' perceptions of support groups, their type and stage of cancer, their satisfaction with the natural support network, and sociodemographic characteristics such as sex, age, race, education, and income determine their response to the cancer experience and may also influence what each individual wants or needs from a support group. Thus, input from the patients is a key in determining which types of support and specific organizational formats may be most conducive to meeting the needs of a wide range of cancer patients. Although instruments have been developed for measuring types of support provided by various sources of the social network, no instruments for measuring patients' preferences for types of support or organizational features of organized support groups could be found. The purpose of this study was to develop an instrument for assessing patients' perceptions of important types of support within the context of the organized group and preferred organizational features for delivering the types of support. METHODOLOGY Instrument construction Theoretical foundation. A number of instruments have been developed to measure types of support provided by various sources of the social network but not for types of support provided within the context of the organized support groups. No instruments for measuring organizational features of groups appear to exist. House's four-type support model5 was utilized to construct the part of the instrument focusing on types of support. It was assumed that specific organizational features can be determined by assessing cancer patient' attitudes about emotional, appraisal, informational, and instrumental types of support and about other aspect of the groups. Based on House's four-type support model, the instrument attempted to answer the following questions:
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Validation Validity of the instrument. A panel of six expert judges was employed for establishing the content validity of the instrument. These experts were selected based on the following criteria: knowledge of educational program development strategies; professional background in the areas of education, health education, and patient education; knowledge of cancer patient needs and cancer support group interventions; and professional and/or personal experience with the physical and psychosocial aspects of cancer. Each judge was requested to comment on the following aspects of the instrument: content of the instrument, appropriateness of the items delineated under each type of support and organizational feature, and clarity of directions. The judges were encouraged to document their comments on the body of the instrument. The judges were also requested to identify addi1. Review of the literature relating to can- tional items that they felt were relevant and to make other comments or suggestions that cer support group interventions. would improve the quality of the instrument. 2. Materials from existing cancer support Pilot validation. The instrument was revised groups. in accordance with comments and suggestions 3. Interviews with individuals who developed or directed cancer support groups. of the panel of judges. A pilot validation was 4. Interviews with patients who have par- then conducted on a small sample of patients (N = 30, 24 females and 6 males) from local ticipated in cancer support groups. cancer support groups. The purpose of conThe analysis focused on types of support that ducting this pilot validation was to (a) detersupport groups might provide and how groups mine if respondents had difficulty answering any questions, (b) evaluate the time required were organized. A total of 90 items was developed to reflect to respond to the instrument, (c) modify items all aspects of the four types of social support if necessary, (d) improve the overall quality of (ie, emotional, appraisal, informational, and the instrument, (e) identify ambiguous items, instrumental) and all identified organizational and (f) identify responses not previously infeatures of support groups. The length of the cluded in the instrument. instrument (84 items in the final version) was Reliability. The instruments in final verdetermined based on a practical considera- sion were mailed to a target population. The tion, ie, we expected cancer patients to com- target population was identified by the tumor plete it within 20 minutes. Items were prepared registry at a clinical cancer center in a large followed guidelines suggested by Babbie,12 midwestern university. Those patients with including (a) making items clear, (b) avoiding breast, colo/rectal, lung/respiratory, or fedouble-barrelled items that contain two or male genital cancers and included in the regmore ideas, (c) making sure respondents are istry between April 1988 and March 1989 able to provide reliable information, (d) writ- were selected to participate in this study. This ing items that are relevant and simple, and (e) sample of cancer patients (N= 873, 670 feavoiding biased or negative items or terms. male and 203 male) was drawn from the reg1. What types of social support-emotional, informational, appraisal, instrumental—do cancer patients perceive as most important when provided within the context of the organized group? 2. What organizational features of the group do cancer patients perceive as most effective for delivering important types of social support? 3. Do cancer patients' perceptions of important types of social support and organizational formats differ according to age, sex, educational level, type of cancer, income, satisfaction with support from natural social network, and previous attendance in a cancer support group? Content of the instrument. The content of the instrument was the result of a detailed analysis of four resources:
C. M. SMOCZYK et al
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istry to represent the four major types of cancer. The mailing consisted of a cover letter, the survey instrument, and a return, stamped envelope addressed to the investigators. Due to economic constraints, no second mailing was performed. After the original Likert-scale responses were transferred to numeral scale, ie, Very Important = 4 and Not Important = 1, the Cronbach alpha13 was employed for computing the internal reliability of the instrument. More specifically, Cronbach alphas were calculated for each type of support and organizational feature of the support group.
Table 3. Subscales and related items Part A A A B A A A B
Item no.* 1,18,25,30,31,33, 36,38 2,8,15,19,26,32 7,28,40 10,11 3,4,5,10,11,12,13, 16,20,22 9,14,23,24,27,29, 35,37,39 6,17,21,34 1,2,3,4,5,6,7,8,9
Subscale Emotional support Appraisal support Instrumental support Information support information/medical information/psychosocial informational/educational Organization features
•Appendix A.
RESULTS Structure of the instrument Based on the content analysis, an instrument consisting of five parts was developed (Table 2; Appendix A). Weighting of the items within each of the five parts was determined by content analysis and recommendations and comments of experts in this area. Parts A (respondents' perceptions of important types of social support) and B (respondents perceptions of important organizational features) were further divided as 7 subscales. These subscales and related item number are displayed in Table 3, and intercorrelations among the subscales are displayed in Table 4. The response scale for Parts A and B assessed respondent attitudes to four categories of support: Very Important, Important, Somewhat Important, and Not Important. Respondents were instructed to check one of the four
choices set out in the Likert-type scale. The undecided or neutral choice was not included in order to force the respondent to choose the most meaningful response based on their perceptions. Responses to Part C were multiple choice, with the number of choices per item ranging from two to six. This part of the instrument was used to further define the features of the support group. Most of the responses to Part D were multiple choice. Item 12 in this part used a combined-response format where respondents could choose one or all of the multiple-choice responses (a-e) and then were instructed to indicate how satisfied they were with their chosen response from four choices: Very Satisfied, Satisfied, Somewhat Satisfied, and Not Satisfied.
Table 2. Content structure of the instrument Part A B C D E
Content surveyed Respondents' perceptions of important types of support Organizational features that respondents consider important in selecting a support group Respondents' specific preferences regarding how support groups are organized Respondent demographics (to explore how support needs and preferences might differ across various groups of cancer patients) Additional background information comments and recommendations
No. of items
%
40 11 16 13
47.6 13.1 19.0 15.5 4.8
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Table 4. Intercorrelations among the subscales Subscale
Appraisal support
Emotional support .69 Appraisal support Instrumental support Information/medical Information/psychosocial Information/educational
Instrumental support
Information/ medical
Information/ psychosocial
Information/ educational
Organization features
.46 .65
.32 .46 .73
.69 .68 .73 .60
.56 .61 .42 .43 .59
.39 .47 .61 .47 .44 .28
,
Reliability to which the content of a test/instrument is judged to be representative of some appropriThe response rate for the final mailing was 30% (N = 258). However, 32 of those in- ate universe or domain of content. In estabcluded notices stating that the subject had lishing content-related evidence, expert judges died. Twelve subjects returned unanswered in- are often employed to review the instrument struments, which were assumed to be refusals and evaluate whether it measures the intended to participate. Specifically, this response sam- subject, trait, variables, or construct intended u ple was primarily female (76.7%), Caucasian by the researcher. Test items should also be (93.1%), aged 40 years and over (90.1%), and examined to indicate whether the items measure predetermined criteria, objectives, or married (68.5%). content. Establishing content validity is the The reliability coefficients for the types of social support and organizational features first concern15 in the development of tests/ were satisfactory. All the Cronbach alphas instruments. The panel employed in the study included were above .8, except for two (instrumental and informational-educational), which were experts in the area of medical treatment of .72 and .78, respectively. The reliability coef- cancer, oncology nursing, cancer group supficients were summarized in Table 5, and the port, occupational therapy, health education, final version of the instrument is included in continuing and vocational education, and educational administration. Besides expert judgeAppendix A. ment, subject's feedback was also important in the process of instrument validation. Often DISCUSSION this can be accomplished by conducting a pilot validation with a small sample of subjects. By Validity of the instrument Validity is the extent to which inferences asking questions such as "Are there any immade by the researcher in designing the instrument are appropriate, meaningful, and useful.14 In order to establish validity of the Table 5. Cronbach alpha coefficients for subscales instrument, some external evidence must indiReliability coefficient cate that the instrument accurately examined Subscale what it is supposed to measure, ie, the cancer Emotional support .9172 patients' perceptions of the important types of Appraisal support .8467 .7246 social support and organizational features of Instrumental support Informational support groups in this study. Informational/medical .8618 The validity of the instrument was accomInformation/psychosocial .8501 Informational/educational .7854 plished by examining the content validity of Organization features .8519 the instrument. Content validity is the extent
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utilizing various stages of item construction and refinement procedures. Information that is useful and practical in the construction of responsive cancer support groups can be derived from the five parts of the instrument. The fact that information is based on the perceptions of cancer patients themselves is of particular significance. Previously, construction of groups has been determined primarily by individuals creating the groups, with little or no input from patients. Yet, studies1'17 suggest that this information is vital if these groups are to be responsive to the psychosocial needs of cancer patients. The usefulness of this instrument lies in its contribution to educational needs assessment and design of effective support group interReliability of the instrument ventions for cancer patients. The tool may be The development of reliable measures particularly helpful in assessing preferences helps minimize the influence of chance or other variables unrelated to the intent of the for types of social support and organizational measure. Information obtained from an un- features for hard-to-reach groups of patients reliable instrument will be ambiguous, incon- such as men, ethnic and racial minorities, and working-class individuals. It can also be usesistent, and useless. The internal consistency of the instrument ful in pre- and posttest designs for evaluating was examined only for Parts A and B, ie, ex- the impact of group participation on targeted aminee's attitude toward the types of social populations of cancer patients. The scale has support and organizational features, because potential applicability to other disease popuParts C, D, and E of the instrument were uti- lations; however, individual items may relized solely for collecting information. All the quire revision to reflect the specific illness. Cronbach alphas were satisfactorily high In conclusion, the instrument developed by (above .8) except two of them (instrumental this study is a valid and reliable one for assessand informational-educational), which were ing cancer patients' preferences for types of .72 and .78, respectively. Although the sam- support and organizational features of the ple employed to collect reliability evidence groups. The instrument is a useful tool for was limited to a group of homogeneous can- health professionals to use in constructing cer patients (female, Caucasian, 40 years of new cancer support groups or for evaluating age and over, and married), the reliability ev- existing groups. idence of the instrument will be maintained or even improved when the instrument is applied Acknowledgements—Appreciation is expressed to Paul to a heterogeneous group of cancer patients. Carbone, Judith Johnson, Ingrid Dilley, Carol Troestler, This is because the reliability of a test in a het- Beatrice Petrich, and Donald McCarty for their valuable comments and advice. erogeneous group provides a lower bound on 16 the reliability in the homogeneous group. The results of this study provide some evREFERENCES idence for the reliability and validity of the instrument for assessing cancer patients' pref- 1. Taylor SE, Falke RL, Mazel RM, Hillsberg BL: Sources of satisfaction and dissatisfaction among erences for types of social support and orgamembers of cancer support groups. In: Gottlieb RH nizational features of groups. Confidence in (ed.): Marshalling Social Support. Beverly Hills, CA: this scale was gained through rigorous design Sage Publications, Inc, 1988, pp 187-208.
portant concerns that the instrument fails to address?" and "Are items confusing to you?" subjects' opinions were examined and utilized in the validation in this study. A positive feedback was received from the pilot validation. While a few of moderately high correlation coefficients were obtained between the subscales, the intercorrelations among the subscales were low. In other words, a cancer patient who preferred to receive one type of support in support groups might have little interest in another type of support. This also demonstrated that the instrument was assessing a multidimensional structure of cancer patients' preferences for support groups.
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2. Falke, RL, Taylor SE: Support groups for cancer patients. UCLA Cancer Center Bulletin 110:13-15, 1983. 3. Gottlieb BH: Social support and community mental 10. health. In: Cohen S, Syme S (eds.): Social Support and Health. New York: Academic Press Inc, 1985. 11. 4. Brown T, Griffiths P: Cancer self-help groups: An inside view. British Medical Journal 292:1503-1504, 1986. 12. 5. House TA: Work Stress and Social Support. Reading: Addison-Wesley, 1981. 13. 6. Henrich RL, Schag CC: Stress and activity management: Group treatment for cancer patients and 14. spouses. Journal of Counseling and Clinical Psychology 53:439-446, 1985. 7. Jacobs C, Ross RD, Walker IM, Stockdale FE: Be- 15. havior of cancer patients: Effects of education and peer support group. Am J Clin Oncol 16:347-353, 1983. 16. 8. Fawzy FI, Cousins N, Fawzy NW, Kemeny ME, Elashoff R, Morto D: Changes over time in immu- 17. nological measures. Arch Gen Psychiatry 47:729-735, 1990. 9. Spiegel D, Bloom JR, Kraemer HC, Gottheil E: Ef-
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fect of psychosocial treatment on survival of patients with metastatic breast cancer. Lancet 2:888-891, 1989. American Cancer Society: Personal telephone conversation with educational director, 1990. Taylor SE, Falke RL, Shoptaw SJ, Lichtman RR: Social support, support groups, and the cancer patient. J Consult Clin Psychol 54:608-615, 1986. Babbie M: Survey Research Methods. Belmont, CA: Wadsworth Publishing Company, 1973. Cronbach LJ: Coefficient alpha and internal structure of tests. Psychometrika 16:297-334, 1951. McMillan JH, Schumacher S: Research in Education: A Conceptual Introduction. 2nd ed. New York: Scott, Foresman & Company, 1989. Allen J, Yen WM: Introduction to Measurement Theory. Monterey, CA: Brooks/Cole Publishing Company, 1979. Lord FM, Novick MR: Statistical Theories of Mental Test Scores. Reading, MA:Addison-Wesley, 1968. Dunkel-Schetter C: Social support and cancer: Findings based on patient interviews and their implications. Journal of Social Issues 40:77-98, 1984.
APPENDIX A CANCER SUPPORT GROUP SURVEY Part A: Reasons f o r J o i n i n g a Cancer Support Group DIRECTIONS; Suppose t h a t someone wants t o o r g a n i z e a support group t h a t w i l l h e l p cancer p a t i e n t s d e a l with c a n c e r . A person w i t h cancer might want t o a t t e n d such a group f o r t h e r e a s o n s l i s t e d i n t h i s survey. P l e a s e i n d i c a t e how important you f e e l each o f t h e s e r e a s o n s a r e by checking t h e a p p r o p r i a t e column. To f i l l out t h i s part of the survey, simply read the item and place a check (/) in the column which most closely represents your opinion. Example:
1. Talking about my fears.
Very Important (VI) /
Important (I)
Somewhat Important (SI)
Not Important (NI)
If you f e e l that one of the most essential services a cancer support group could provide you with would be an opportunity t o express your fears, then you will check the f i r s t column. Please be sure t o check a column for every item. Reasons for Attending a Cancer Support Group 1. Talking about my fears.
VI
I
SI
NI
2. Getting advice from other group members.
VI
I
si
NI
3. Learning what t o expect from chemotherapy and radiation treatments.
VI
I
SI
NI
4. Becoming more informed about the drugs used in cancer treatment and their side-effects.
VI
I
SI
NI
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Example:
I. Talking about my fears.
Very Important (VI) /
Important (I)
Somewhat Important (SI)
Not Important (NI)
5. Getting information on how t o reduce or control side-effect.
VI
I
SI
NI
6. Learning about non-medical techniques for improving my health, such as picturing myself healthy and
VI
I
SI
NI
7. Getting help f i l l i n g out insurance or health forms.
VI
I
SI
NI
8. Giving help or advice t o other people in the group. 9. Finding out how other people have handle the cosmetic consequences of cancer treatment ( i . e . , where t o get a good wig and prosthetic devices, finding out what kind of make-up to wear, e t c . ) .
VI VI
I I
SI SI
NI NI
10. Learning what kinds of foods are best for certain conditions ( i . e . , foods that won't increase nausea, i r r i t a t e mouth sores, etc.)?
VI
I
si
NI
I I . Learning new ways to prepare foods.
VI
I
SI
NI
12. Getting information about medications that reduce tension.
VI
I
SI
NI
13. Getting information about medical aids for r e l i e f of s i d e - e f f e c t s ( i . e . , Hickmans, and infuse-a-ports, etc.).
VI
I
SI
NI
14. Finding out what questions I should be asking my physician and other medical personnel.
VI
I
SI
NI
15. Learning about how other people deal with having cancer and comparing my methods for dealing with cancer to theirs.
VI
I
SI
NI
16. Hearing about current medical research.
VI
I
SI
NI
17. Taking part in a c t i v i t i e s that teach me to be more comfortable saying what i s on my mind to doctors and others involved in my health care.
VI VI
I
SI
NI
18. Knowing that I am not alone.
VI
I
SI
NI
19. Finding out from other group members how they think I am handling the d i f f i c u l t i e s of having cancer.
VI
I
SI
NI
20,. Learning about health diets and nutrition.
VI
I
SI
NI
21. Learning and practicing meditation s k i l l s .
VI
I
SI
NI
22. Learning about other healing practices (like acupressure, herbs and vitamins, e t c . ) .
VI
I
SI
NI
23. Getting information about making my l i f e s t y l e healthier.
VI
I
SI
NI
24. Discussing religious or spiritual concerns.
VI
I
SI
NI
25. Talking about my feelings regarding cancer.
VI
I
SI
NI
26. Comparing the progress other patients are making with my progress.
VI
I
SI
NI
free of cancer.
•
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Example:
1. Talking about my fears.
Very Important (VI) /
Important (I)
Somewhat Important (SI)
Not Important (NI)
27. Learning how t o talk with my family about my cancer.
VI
I
SI
NI
28. Being able t o borrow books, tapes, and videos through the support group.
VI
I
SI
NI
29. Getting information on how t o handle financial or economic problems.
VI
I
SI
NI
30. Developing caring friendships with other cancer patients in the group.
VI
I
SI
NI
31. having a place t o express anger, frustration, depression.
VI
I
SI
NI
32. Learning how other group members deal with their problems.
VI
I
SI
NI
33. Relaxing with others who understand my experience because they are going through the same thing.
VI
I
SI
NI
34. Learning and practicing relaxation a c t i v i t i e s .
VI
I
SI
NI
35. Learning how t o talk with my physician and other medical caregivers.
VI
I
SI
NI
36. Having a place t o cry openly.
VI
I
SI
NI
37. Learning about sexual issues that may arise as a result of my i l l n e s s .
VI
I
SI
NI
38. Getting comfort and reassurance from other cancer patients in the group.
VI
I
SI
NI
39. Discussing issues related t o death and dying.
VI
I
SI
NI
40. Being able t o borrow wigs through the support group.
VI
I
SI
NI
Part B: Organizational Features Considered Important When Choosing a Cancer Support Group DIRECTIONS; Suppose that you have decided t o join a cancer support group. In investigating available groups, how important do you consider each of the following aspects of a support group? We are not asking, in t h i s section, what type of groups you prefer, but rather we wish to know which aspects of groups are most important t o compare when choosing a group. Example: Very Important (VI) 1. Qualifications of the person / who leads the group ( i . e . , medical experts, other cancer patients, e t c ) .
Important (I)
Somewhat Important (SI)
Not Important (NI)
If you consider the qualifications of the group leader one of the most important c r i t e r i a in choosing a support group, you will check the f i r s t column above, regardless of what kind of leader you prefer. (PART C of t h i s survey w i l l give
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Example: Very Important (VI) 1. Qualifications of the person / who leads the group ( i . e . , medical experts, other cancer patients, e t c ) .
Important (I)
Somewhat Important (SI)
Not Important (NI)
you an opportunity t o indicate your s p e c i f i c preferences regarding the organization of support groups.) Please be sure t o check a column for every item. Organizational Features of Cancer Support Groups 1. Qualifications of the person who leads the group ( i . e . , medical experts, other cancer patients, e t c . ) .
VI
I
SI
NI
2. Types of people who make up the group membership ( i . e . , cancer patients only, cancer patients and their family members, e t c . ) .
VI
I
si
NI
3. Location of the group meetings ( i . e . , private homes, hospital, e t c . ) .
VI
I
SI
NI
4. Number of participants in a group.
VI
I
SI
HI
5. Length of the group meetings.
VI
I
SI
NI
6. How often meetings are held ( i . e . , once a week, monthly, e t c . ) .
VI
I
SI
NI
7. Times of the group meetings ( i . e . , mornings, afternoons, evenings, e t c . ) .
VI
I
SI
NI
8. Cost of the group meetings ( i . e . , free, small charge, etc.).
VI
I
SI
NI
9. Duration of the group ( i . e . , offered on an on-going basis, for limited time, e t c . ) .
VI
I
SI
NI
10. Having transportation available t o and from meetings.
VI
I
SI
NI
11. Having childcare available during the meetings.
VI
I
SI
NI
Part C: Preferred Organization of Support Groups DIRECTIONS; Please indicate with a check mark (/) the alternative that best represents your opinion in the following questions. Check only one alternative. 1. Would you most prefer group meetings led by a. Medical experts ( i . e . , doctors, nurses)? b. Psychologists or therapists? c. By group members themselves? d. By other cancer patients with special training in leading groups? e. Other (Please specify) . 2. Would you prefer t o participate in a support group whose members were a l l cancer patients or a group that included both cancer patients and patients with other life-threatening illnesses? a. Only cancer patients with the same kind of cancer b. Only cancer patients but with different kinds of cancer. c. Cancer patients and patients with other life-threatening i l l n e s s e s .
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3. Do you think hospital patients and outpatients should participate in the same support groups or meet separately? a. Separate groups for hospital patients and out-patients. b. Hospital patients and outpatients should be in support group together. 4. Do you believe there should be separate groups for cancer patients whose i l l n e s s has been recently diagnosed and for those who have know about their cancer for a long time? a. Separate groups for patients recently diagnosed and those who have known about their i l l n e s s for a long time? b. Recently diagnosed cancer patients and those who have know about their i l l n e s s for a long time should be in support groups together. 5. Should there be separate groups for cancer patients with more serious cancers than for those with less serious cancers? a. Different groups for those with more Berious cases of cancer. b. Patients with more serious cancers and patients with less serious cancers should be in the same groups. 6. Would you rather participate in a cancer support group designed for: a. Cancer patients only. b. Cancer patients and their families, with patients and families meeting separately. c. Cancer patients and their families, with patients and families meeting together. d. Cancer patients and their families, with a mixture of some separate meetings for patients and families and some meetings that bring the two groups together. 7. Do you feel that adult cancer patients of different age groups should have separate support groups? a. Separate groups for younger and older adults. b. All adult cancer patients should be together in the same group, regardless of age. 8. Would you most prefer group meetings be held: a. In the homes of support group members? b. At the hospital? c. In medical clinics? d. At churches or spiritual centers? e. In community settings? f. Other (Please specify) ? 9. Do you feel group meetings should last a. One hour or less? b. 1 t o 2 hours? c. However much time i s needed? 10. Do you feel the ideal number of group members i s a. 8 or less? b. 9 to 15? c. More than 15? 11. Would you prefer to participate in a group which met: a. Once a week? b. Twice a week? c. Every other week? d. Once a month? 12. At what time would you prefer to attend support group meetings? a. Mornings b. Afternoons c. Evenings d. Any of the above times 13. Do you feel group meetings should: a. Be free of charges? b. Cost members a small amount of money? c. Be paid for by medical insurance?
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14. For how long do you think support groups should be o f f e r e d ? a. Offered f o r a l i m i t e d amount of time such as 6 weeks or 12 weeks. b. Offered on a continuous b a s i s , with new members j o i n i n g a t any time and continuing t o meet with t h e group as long as they wish. c. Offered f o r a l i m i t e d amount of time, but with t h e options t o continue for a longer period i f group members wish t o continue meeting. d. Other (Please s p e c i f y ) . 15. What kind of s t r u c t u r e would you prefer f o r support group meetings? a. Very structured ( i . e . , meetings should have e s t a b l i s h e d t o p i c s and the amount of time spent on each t o p i c should be planned i n advance.). b. Moderately structured ( i . e . , d i s c u s s i o n t o p i c s should be planned f o r at l e a s t some meetings, but the amount of time spent on each t o p i c should not always be planned i n advance; meetings should include some time f o r f r e e d i s c u s s i o n of whatever i s on the minds of t h e group members.). c. Loosely structured ( i . e . , most of the meeting time should be used f o r group members t o t a l k about whatever i s on t h e i r minds.). d. Very structured a t f i r s t , l e s s structured as time goes on. e. Other (Please s p e c i f y ) . 16. What do you b e l i e v e i s the b e s t way t o inform cancer p a t i e n t s about a v a i l a b l e cancer support groups? a. Through p h y s i c i a n s . b. Through nurses. c. Through n o t i c e s on h o s p i t a l / c l i n i c b u l l e t i n boards. d. Through pamphlet a v a i l a b l e i n waiting rooms, exam rooms, e t c . e. Other (Please s p e c i f y ) .
Part D: Participant Background DIRECTIONS: These l a s t few background questions w i l l h e l p us understand support needs of d i f f e r e n t groups of cancer p a t i e n t s . 1. Sex
a. Male
b. Female
2. Age 3. Type of Cancer 4. Present marital s t a t u s a. Never married d. Divorced b. Married e. Widowed c. Separated f. M a r i t a l - l i k e r e l a t i o n s h i p 5. Racial or e t h n i c group a. Caucasian b. Black c. American Indian d. Hispanic
e. Asian or P a c i f i c Islander f. Other (Please s p e c i f y )
6. Total family income (before t a x e s ) a. l e s s than $10,000 d. $40,001 b. $10,000 - $25,000 e . $55,001 c. $25,001 - $40,000 f. $70,001 7. Highest l e v e l of education a. 8th grade or l e s s b. Some high school c. High school graduate d. Some c o l l e g e e. College graduate f. Other (Please s p e c i f y ) 8. Employment s t a t u s a. Employed b. Unemployed
i n 1989 - $55,000 - $70,000 or more
the
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9. Your present or most recent occupation? (If apply) Your spouse's present or most recent occupation? 10. Have you ever attended a support group for a reason other than cancer? a. Mo b. If yes, for what reason? Please specify. 11. Have you ever attended any type of group for cancer ( i . e . , s e l f - h e l p , support, educational, etc.)? a. No b. If yes, for how long? If you answered rjo t o question 11, please go on t o question 13. If you answered yes t o question 11, please answer question 12. 12. What was your l e v e l of s a t i s f a c t i o n or d i s s a t i s f a c t i o n with the cancer support groups you have attended? Group Name
Very Satisfied
Satisfied
Somewhat Satisfied
Not Satisfied
13. Please check your s a t i s f a c t i o n with your a b i l i t y t o talk comfortably with the following people about concerns related t o your i l l n e s s . Very Satisfied a. b. c. d. e.
Satisfied
Somewhat Satisfied
Not Satisfied
My spouse or close companion. My personal physician. Other medical caregivers. My family members. My r e l i g i o u s or s p i r i t u a l leader
Part E: Additional Background Information DIRECTIONS: Please answer a l l questions that apply t o you. Please be as s p e c i f i c as possible. Feel free t o attach additional paper i f needed. 1. I f you have ever participated in a cancer support group, what was your main reason for going? 2. If you have never participated in a cancer support group, why not? 3. If you attended a support group with which you were not s a t i s f i e d , what was the reason for your d i s s a t i s f a c t i o n ? 4. Please describe any important features of cancer support groups that are not include in t h i s survey. COMMENTS:
Thank you for completing this Survey! We sincerely appreciate your cooperation and participation.
ISSN: 0885-8195 (Print) 1543-0154 (Online) Journal homepage: http://www.tandfonline.com/loi/hjce20
An instrument for measuring cancer patients’ preferences for support groups Constance M. Smoczyk PhD , Weimo Zhu PhD & Marianmne H. Whatley PhD To cite this article: Constance M. Smoczyk PhD , Weimo Zhu PhD & Marianmne H. Whatley PhD (1992) An instrument for measuring cancer patients’ preferences for support groups, Journal of Cancer Education, 7:3, 267-279 To link to this article: http://dx.doi.org/10.1080/08858199209528178
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Date: 15 March 2017, At: 20:10
J. Cancer Education. Vol. 7, No. 3, pp. 267-279, 1992 Printed in the U.S.A. Pergamon Press Ltd.
0885-8195/92 S5.00 + .00 © 1992 American Association for Cancer Education
AN INSTRUMENT FOR MEASURING CANCER PATIENTS' PREFERENCES FOR SUPPORT GROUPS CONSTANCE M. SMOCZYK, PhD*; WEIMO ZHU, MARIANMNE H. WHATLEY, PhD‡
PhD†;
Abstract —The purpose of this study was to develop a valid and reliable instrument to assess cancer patients' preferences for all types of social support and organizational features of cancer support groups. The content of the instrument was the result of a detailed analysis of four resources: (1) literature relating to cancer support group interventions, (2) program materials from existing groups, (3) interviews with individuals who developed or directed groups, and (4) interviews with patients who have participated in cancer support groups. A jury of six experts was used to establish content validity of the instrument. The reliability of the instrument was examined by measuring a sample of 258 cancer patients. The reliability coefficients of the instrument were all above .80, except for two types of social support (instrumental and informational-educational), which were .72 and .78, respectively. It was concluded that the instrument produces valid and reliable measurements of cancer patients' preferences for cancer support groups.
INTRODUCTION Cancer support groups have grown increasingly prominent in the health field as medical professionals have become more cognizant of the benefits that group intervention can have on adjustment to disease. Previous research1-2 suggests that cancer support groups are generally satisfying to participants and that they can be used to create a new support system for an individual, strengthen an existing one, or train a person on how to strengthen his or her personal support network.3 Support group interventions create opportunities for support, participative learning, and empowerment4 by providing important types of social support. Although there are many different types of social support, most fall into four wide-ranging categories5: Emotional, Informational, Appraisal, and Instrumental, which are illustrated in Table 1. Other
important sources for deriving these important types of social support include the natural network of spouse, family, friends, coworkers, and health care providers. Some of the many reported benefits of participating in a cancer support group include improved psychosocial functioning,6 decreased depression and anxiety, and improvement in personal habits, interpersonal problems, and treatment problems.7 Recent evidence also suggests that active participation in support groups may positively affect immunological responses8 and increased survival rates.9 Overall, it is estimated that only 10% of cancer patients join a support group.10 Can-
Table 1. Type of social support Type of support
Emotional *Madison, WI. † Assistant Professor, Health, Physical Education and Appraisal Recreation, Wayne State University, Detroit, Michigan. ‡Professor, Curriculum and Instruction, University of Informational Wisconsin, Madison, WI. Reprint requests to: Weimo Zhu, PhD, 257 Matthaei Instrumental Building, Health, PE & Recreation, Wayne State University, Detroit, MI 48202.
267
Content of supportive act Esteem, affect, trust, concern, listening Affirmation, feedback, social comparison Advice, suggestion, directives, information Aid in kind, money, labor, time, modifying environment
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cer patients most likely to participate in a group intervention are white females of middle to upper socioeconomic status.11 Men, minorities, and working-class individuals are much less likely to participate in a group,' although there is some indication that men will participate in groups that encourage spousal participation and focus on providing informational rather than emotional types of support. Although the majority of cancer patients who do participate in existing groups appear satisfied with their experiences, some findings show dissatisfaction with the types of support provided by the groups. There also appears to be dissatisfaction with the organizational features of these groups, such as processes, formats, and leadership. For example, Taylor et al1 surveyed a large number of cancer patients and found that 35% were critical of one or more aspects of the groups: groups were too large, topics were too narrow, too much discussion of feelings, and a format that was insufficiently educational. These investigations also found that those who dropped out of the groups voiced specific objections to the groups' format and structure, 52% said the group did not meet their expectations. Support groups may not be helpful or appealing to all cancer patients, but existing evidence indicates their potential to reach a much larger cancer patient population while better serving the psychosocial needs of the population to whom they currently appear. To date, cancer support groups have been developed primarily from the perspective of the individual creating the group, rather than from the patients' perspectives. Yet cancer patients have their own unique perceptions of the types of social support that they would find most helpful within the context of a support group setting and their own personal preferences for organizational features that they would find most comfortable for delivering important types of support. And these perspectives may not coincide with those of individuals responsible for developing groups. Taylor et al1 state that by virtue of thenshared condition, cancer patients may have a better idea of the types of support and orga-
nizational feature that are most helpful to other cancer patients. Patients' perceptions of support groups, their type and stage of cancer, their satisfaction with the natural support network, and sociodemographic characteristics such as sex, age, race, education, and income determine their response to the cancer experience and may also influence what each individual wants or needs from a support group. Thus, input from the patients is a key in determining which types of support and specific organizational formats may be most conducive to meeting the needs of a wide range of cancer patients. Although instruments have been developed for measuring types of support provided by various sources of the social network, no instruments for measuring patients' preferences for types of support or organizational features of organized support groups could be found. The purpose of this study was to develop an instrument for assessing patients' perceptions of important types of support within the context of the organized group and preferred organizational features for delivering the types of support. METHODOLOGY Instrument construction Theoretical foundation. A number of instruments have been developed to measure types of support provided by various sources of the social network but not for types of support provided within the context of the organized support groups. No instruments for measuring organizational features of groups appear to exist. House's four-type support model5 was utilized to construct the part of the instrument focusing on types of support. It was assumed that specific organizational features can be determined by assessing cancer patient' attitudes about emotional, appraisal, informational, and instrumental types of support and about other aspect of the groups. Based on House's four-type support model, the instrument attempted to answer the following questions:
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Validation Validity of the instrument. A panel of six expert judges was employed for establishing the content validity of the instrument. These experts were selected based on the following criteria: knowledge of educational program development strategies; professional background in the areas of education, health education, and patient education; knowledge of cancer patient needs and cancer support group interventions; and professional and/or personal experience with the physical and psychosocial aspects of cancer. Each judge was requested to comment on the following aspects of the instrument: content of the instrument, appropriateness of the items delineated under each type of support and organizational feature, and clarity of directions. The judges were encouraged to document their comments on the body of the instrument. The judges were also requested to identify addi1. Review of the literature relating to can- tional items that they felt were relevant and to make other comments or suggestions that cer support group interventions. would improve the quality of the instrument. 2. Materials from existing cancer support Pilot validation. The instrument was revised groups. in accordance with comments and suggestions 3. Interviews with individuals who developed or directed cancer support groups. of the panel of judges. A pilot validation was 4. Interviews with patients who have par- then conducted on a small sample of patients (N = 30, 24 females and 6 males) from local ticipated in cancer support groups. cancer support groups. The purpose of conThe analysis focused on types of support that ducting this pilot validation was to (a) detersupport groups might provide and how groups mine if respondents had difficulty answering any questions, (b) evaluate the time required were organized. A total of 90 items was developed to reflect to respond to the instrument, (c) modify items all aspects of the four types of social support if necessary, (d) improve the overall quality of (ie, emotional, appraisal, informational, and the instrument, (e) identify ambiguous items, instrumental) and all identified organizational and (f) identify responses not previously infeatures of support groups. The length of the cluded in the instrument. instrument (84 items in the final version) was Reliability. The instruments in final verdetermined based on a practical considera- sion were mailed to a target population. The tion, ie, we expected cancer patients to com- target population was identified by the tumor plete it within 20 minutes. Items were prepared registry at a clinical cancer center in a large followed guidelines suggested by Babbie,12 midwestern university. Those patients with including (a) making items clear, (b) avoiding breast, colo/rectal, lung/respiratory, or fedouble-barrelled items that contain two or male genital cancers and included in the regmore ideas, (c) making sure respondents are istry between April 1988 and March 1989 able to provide reliable information, (d) writ- were selected to participate in this study. This ing items that are relevant and simple, and (e) sample of cancer patients (N= 873, 670 feavoiding biased or negative items or terms. male and 203 male) was drawn from the reg1. What types of social support-emotional, informational, appraisal, instrumental—do cancer patients perceive as most important when provided within the context of the organized group? 2. What organizational features of the group do cancer patients perceive as most effective for delivering important types of social support? 3. Do cancer patients' perceptions of important types of social support and organizational formats differ according to age, sex, educational level, type of cancer, income, satisfaction with support from natural social network, and previous attendance in a cancer support group? Content of the instrument. The content of the instrument was the result of a detailed analysis of four resources:
C. M. SMOCZYK et al
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istry to represent the four major types of cancer. The mailing consisted of a cover letter, the survey instrument, and a return, stamped envelope addressed to the investigators. Due to economic constraints, no second mailing was performed. After the original Likert-scale responses were transferred to numeral scale, ie, Very Important = 4 and Not Important = 1, the Cronbach alpha13 was employed for computing the internal reliability of the instrument. More specifically, Cronbach alphas were calculated for each type of support and organizational feature of the support group.
Table 3. Subscales and related items Part A A A B A A A B
Item no.* 1,18,25,30,31,33, 36,38 2,8,15,19,26,32 7,28,40 10,11 3,4,5,10,11,12,13, 16,20,22 9,14,23,24,27,29, 35,37,39 6,17,21,34 1,2,3,4,5,6,7,8,9
Subscale Emotional support Appraisal support Instrumental support Information support information/medical information/psychosocial informational/educational Organization features
•Appendix A.
RESULTS Structure of the instrument Based on the content analysis, an instrument consisting of five parts was developed (Table 2; Appendix A). Weighting of the items within each of the five parts was determined by content analysis and recommendations and comments of experts in this area. Parts A (respondents' perceptions of important types of social support) and B (respondents perceptions of important organizational features) were further divided as 7 subscales. These subscales and related item number are displayed in Table 3, and intercorrelations among the subscales are displayed in Table 4. The response scale for Parts A and B assessed respondent attitudes to four categories of support: Very Important, Important, Somewhat Important, and Not Important. Respondents were instructed to check one of the four
choices set out in the Likert-type scale. The undecided or neutral choice was not included in order to force the respondent to choose the most meaningful response based on their perceptions. Responses to Part C were multiple choice, with the number of choices per item ranging from two to six. This part of the instrument was used to further define the features of the support group. Most of the responses to Part D were multiple choice. Item 12 in this part used a combined-response format where respondents could choose one or all of the multiple-choice responses (a-e) and then were instructed to indicate how satisfied they were with their chosen response from four choices: Very Satisfied, Satisfied, Somewhat Satisfied, and Not Satisfied.
Table 2. Content structure of the instrument Part A B C D E
Content surveyed Respondents' perceptions of important types of support Organizational features that respondents consider important in selecting a support group Respondents' specific preferences regarding how support groups are organized Respondent demographics (to explore how support needs and preferences might differ across various groups of cancer patients) Additional background information comments and recommendations
No. of items
%
40 11 16 13
47.6 13.1 19.0 15.5 4.8
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Table 4. Intercorrelations among the subscales Subscale
Appraisal support
Emotional support .69 Appraisal support Instrumental support Information/medical Information/psychosocial Information/educational
Instrumental support
Information/ medical
Information/ psychosocial
Information/ educational
Organization features
.46 .65
.32 .46 .73
.69 .68 .73 .60
.56 .61 .42 .43 .59
.39 .47 .61 .47 .44 .28
,
Reliability to which the content of a test/instrument is judged to be representative of some appropriThe response rate for the final mailing was 30% (N = 258). However, 32 of those in- ate universe or domain of content. In estabcluded notices stating that the subject had lishing content-related evidence, expert judges died. Twelve subjects returned unanswered in- are often employed to review the instrument struments, which were assumed to be refusals and evaluate whether it measures the intended to participate. Specifically, this response sam- subject, trait, variables, or construct intended u ple was primarily female (76.7%), Caucasian by the researcher. Test items should also be (93.1%), aged 40 years and over (90.1%), and examined to indicate whether the items measure predetermined criteria, objectives, or married (68.5%). content. Establishing content validity is the The reliability coefficients for the types of social support and organizational features first concern15 in the development of tests/ were satisfactory. All the Cronbach alphas instruments. The panel employed in the study included were above .8, except for two (instrumental and informational-educational), which were experts in the area of medical treatment of .72 and .78, respectively. The reliability coef- cancer, oncology nursing, cancer group supficients were summarized in Table 5, and the port, occupational therapy, health education, final version of the instrument is included in continuing and vocational education, and educational administration. Besides expert judgeAppendix A. ment, subject's feedback was also important in the process of instrument validation. Often DISCUSSION this can be accomplished by conducting a pilot validation with a small sample of subjects. By Validity of the instrument Validity is the extent to which inferences asking questions such as "Are there any immade by the researcher in designing the instrument are appropriate, meaningful, and useful.14 In order to establish validity of the Table 5. Cronbach alpha coefficients for subscales instrument, some external evidence must indiReliability coefficient cate that the instrument accurately examined Subscale what it is supposed to measure, ie, the cancer Emotional support .9172 patients' perceptions of the important types of Appraisal support .8467 .7246 social support and organizational features of Instrumental support Informational support groups in this study. Informational/medical .8618 The validity of the instrument was accomInformation/psychosocial .8501 Informational/educational .7854 plished by examining the content validity of Organization features .8519 the instrument. Content validity is the extent
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utilizing various stages of item construction and refinement procedures. Information that is useful and practical in the construction of responsive cancer support groups can be derived from the five parts of the instrument. The fact that information is based on the perceptions of cancer patients themselves is of particular significance. Previously, construction of groups has been determined primarily by individuals creating the groups, with little or no input from patients. Yet, studies1'17 suggest that this information is vital if these groups are to be responsive to the psychosocial needs of cancer patients. The usefulness of this instrument lies in its contribution to educational needs assessment and design of effective support group interReliability of the instrument ventions for cancer patients. The tool may be The development of reliable measures particularly helpful in assessing preferences helps minimize the influence of chance or other variables unrelated to the intent of the for types of social support and organizational measure. Information obtained from an un- features for hard-to-reach groups of patients reliable instrument will be ambiguous, incon- such as men, ethnic and racial minorities, and working-class individuals. It can also be usesistent, and useless. The internal consistency of the instrument ful in pre- and posttest designs for evaluating was examined only for Parts A and B, ie, ex- the impact of group participation on targeted aminee's attitude toward the types of social populations of cancer patients. The scale has support and organizational features, because potential applicability to other disease popuParts C, D, and E of the instrument were uti- lations; however, individual items may relized solely for collecting information. All the quire revision to reflect the specific illness. Cronbach alphas were satisfactorily high In conclusion, the instrument developed by (above .8) except two of them (instrumental this study is a valid and reliable one for assessand informational-educational), which were ing cancer patients' preferences for types of .72 and .78, respectively. Although the sam- support and organizational features of the ple employed to collect reliability evidence groups. The instrument is a useful tool for was limited to a group of homogeneous can- health professionals to use in constructing cer patients (female, Caucasian, 40 years of new cancer support groups or for evaluating age and over, and married), the reliability ev- existing groups. idence of the instrument will be maintained or even improved when the instrument is applied Acknowledgements—Appreciation is expressed to Paul to a heterogeneous group of cancer patients. Carbone, Judith Johnson, Ingrid Dilley, Carol Troestler, This is because the reliability of a test in a het- Beatrice Petrich, and Donald McCarty for their valuable comments and advice. erogeneous group provides a lower bound on 16 the reliability in the homogeneous group. The results of this study provide some evREFERENCES idence for the reliability and validity of the instrument for assessing cancer patients' pref- 1. Taylor SE, Falke RL, Mazel RM, Hillsberg BL: Sources of satisfaction and dissatisfaction among erences for types of social support and orgamembers of cancer support groups. In: Gottlieb RH nizational features of groups. Confidence in (ed.): Marshalling Social Support. Beverly Hills, CA: this scale was gained through rigorous design Sage Publications, Inc, 1988, pp 187-208.
portant concerns that the instrument fails to address?" and "Are items confusing to you?" subjects' opinions were examined and utilized in the validation in this study. A positive feedback was received from the pilot validation. While a few of moderately high correlation coefficients were obtained between the subscales, the intercorrelations among the subscales were low. In other words, a cancer patient who preferred to receive one type of support in support groups might have little interest in another type of support. This also demonstrated that the instrument was assessing a multidimensional structure of cancer patients' preferences for support groups.
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2. Falke, RL, Taylor SE: Support groups for cancer patients. UCLA Cancer Center Bulletin 110:13-15, 1983. 3. Gottlieb BH: Social support and community mental 10. health. In: Cohen S, Syme S (eds.): Social Support and Health. New York: Academic Press Inc, 1985. 11. 4. Brown T, Griffiths P: Cancer self-help groups: An inside view. British Medical Journal 292:1503-1504, 1986. 12. 5. House TA: Work Stress and Social Support. Reading: Addison-Wesley, 1981. 13. 6. Henrich RL, Schag CC: Stress and activity management: Group treatment for cancer patients and 14. spouses. Journal of Counseling and Clinical Psychology 53:439-446, 1985. 7. Jacobs C, Ross RD, Walker IM, Stockdale FE: Be- 15. havior of cancer patients: Effects of education and peer support group. Am J Clin Oncol 16:347-353, 1983. 16. 8. Fawzy FI, Cousins N, Fawzy NW, Kemeny ME, Elashoff R, Morto D: Changes over time in immu- 17. nological measures. Arch Gen Psychiatry 47:729-735, 1990. 9. Spiegel D, Bloom JR, Kraemer HC, Gottheil E: Ef-
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fect of psychosocial treatment on survival of patients with metastatic breast cancer. Lancet 2:888-891, 1989. American Cancer Society: Personal telephone conversation with educational director, 1990. Taylor SE, Falke RL, Shoptaw SJ, Lichtman RR: Social support, support groups, and the cancer patient. J Consult Clin Psychol 54:608-615, 1986. Babbie M: Survey Research Methods. Belmont, CA: Wadsworth Publishing Company, 1973. Cronbach LJ: Coefficient alpha and internal structure of tests. Psychometrika 16:297-334, 1951. McMillan JH, Schumacher S: Research in Education: A Conceptual Introduction. 2nd ed. New York: Scott, Foresman & Company, 1989. Allen J, Yen WM: Introduction to Measurement Theory. Monterey, CA: Brooks/Cole Publishing Company, 1979. Lord FM, Novick MR: Statistical Theories of Mental Test Scores. Reading, MA:Addison-Wesley, 1968. Dunkel-Schetter C: Social support and cancer: Findings based on patient interviews and their implications. Journal of Social Issues 40:77-98, 1984.
APPENDIX A CANCER SUPPORT GROUP SURVEY Part A: Reasons f o r J o i n i n g a Cancer Support Group DIRECTIONS; Suppose t h a t someone wants t o o r g a n i z e a support group t h a t w i l l h e l p cancer p a t i e n t s d e a l with c a n c e r . A person w i t h cancer might want t o a t t e n d such a group f o r t h e r e a s o n s l i s t e d i n t h i s survey. P l e a s e i n d i c a t e how important you f e e l each o f t h e s e r e a s o n s a r e by checking t h e a p p r o p r i a t e column. To f i l l out t h i s part of the survey, simply read the item and place a check (/) in the column which most closely represents your opinion. Example:
1. Talking about my fears.
Very Important (VI) /
Important (I)
Somewhat Important (SI)
Not Important (NI)
If you f e e l that one of the most essential services a cancer support group could provide you with would be an opportunity t o express your fears, then you will check the f i r s t column. Please be sure t o check a column for every item. Reasons for Attending a Cancer Support Group 1. Talking about my fears.
VI
I
SI
NI
2. Getting advice from other group members.
VI
I
si
NI
3. Learning what t o expect from chemotherapy and radiation treatments.
VI
I
SI
NI
4. Becoming more informed about the drugs used in cancer treatment and their side-effects.
VI
I
SI
NI
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Example:
I. Talking about my fears.
Very Important (VI) /
Important (I)
Somewhat Important (SI)
Not Important (NI)
5. Getting information on how t o reduce or control side-effect.
VI
I
SI
NI
6. Learning about non-medical techniques for improving my health, such as picturing myself healthy and
VI
I
SI
NI
7. Getting help f i l l i n g out insurance or health forms.
VI
I
SI
NI
8. Giving help or advice t o other people in the group. 9. Finding out how other people have handle the cosmetic consequences of cancer treatment ( i . e . , where t o get a good wig and prosthetic devices, finding out what kind of make-up to wear, e t c . ) .
VI VI
I I
SI SI
NI NI
10. Learning what kinds of foods are best for certain conditions ( i . e . , foods that won't increase nausea, i r r i t a t e mouth sores, etc.)?
VI
I
si
NI
I I . Learning new ways to prepare foods.
VI
I
SI
NI
12. Getting information about medications that reduce tension.
VI
I
SI
NI
13. Getting information about medical aids for r e l i e f of s i d e - e f f e c t s ( i . e . , Hickmans, and infuse-a-ports, etc.).
VI
I
SI
NI
14. Finding out what questions I should be asking my physician and other medical personnel.
VI
I
SI
NI
15. Learning about how other people deal with having cancer and comparing my methods for dealing with cancer to theirs.
VI
I
SI
NI
16. Hearing about current medical research.
VI
I
SI
NI
17. Taking part in a c t i v i t i e s that teach me to be more comfortable saying what i s on my mind to doctors and others involved in my health care.
VI VI
I
SI
NI
18. Knowing that I am not alone.
VI
I
SI
NI
19. Finding out from other group members how they think I am handling the d i f f i c u l t i e s of having cancer.
VI
I
SI
NI
20,. Learning about health diets and nutrition.
VI
I
SI
NI
21. Learning and practicing meditation s k i l l s .
VI
I
SI
NI
22. Learning about other healing practices (like acupressure, herbs and vitamins, e t c . ) .
VI
I
SI
NI
23. Getting information about making my l i f e s t y l e healthier.
VI
I
SI
NI
24. Discussing religious or spiritual concerns.
VI
I
SI
NI
25. Talking about my feelings regarding cancer.
VI
I
SI
NI
26. Comparing the progress other patients are making with my progress.
VI
I
SI
NI
free of cancer.
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Example:
1. Talking about my fears.
Very Important (VI) /
Important (I)
Somewhat Important (SI)
Not Important (NI)
27. Learning how t o talk with my family about my cancer.
VI
I
SI
NI
28. Being able t o borrow books, tapes, and videos through the support group.
VI
I
SI
NI
29. Getting information on how t o handle financial or economic problems.
VI
I
SI
NI
30. Developing caring friendships with other cancer patients in the group.
VI
I
SI
NI
31. having a place t o express anger, frustration, depression.
VI
I
SI
NI
32. Learning how other group members deal with their problems.
VI
I
SI
NI
33. Relaxing with others who understand my experience because they are going through the same thing.
VI
I
SI
NI
34. Learning and practicing relaxation a c t i v i t i e s .
VI
I
SI
NI
35. Learning how t o talk with my physician and other medical caregivers.
VI
I
SI
NI
36. Having a place t o cry openly.
VI
I
SI
NI
37. Learning about sexual issues that may arise as a result of my i l l n e s s .
VI
I
SI
NI
38. Getting comfort and reassurance from other cancer patients in the group.
VI
I
SI
NI
39. Discussing issues related t o death and dying.
VI
I
SI
NI
40. Being able t o borrow wigs through the support group.
VI
I
SI
NI
Part B: Organizational Features Considered Important When Choosing a Cancer Support Group DIRECTIONS; Suppose that you have decided t o join a cancer support group. In investigating available groups, how important do you consider each of the following aspects of a support group? We are not asking, in t h i s section, what type of groups you prefer, but rather we wish to know which aspects of groups are most important t o compare when choosing a group. Example: Very Important (VI) 1. Qualifications of the person / who leads the group ( i . e . , medical experts, other cancer patients, e t c ) .
Important (I)
Somewhat Important (SI)
Not Important (NI)
If you consider the qualifications of the group leader one of the most important c r i t e r i a in choosing a support group, you will check the f i r s t column above, regardless of what kind of leader you prefer. (PART C of t h i s survey w i l l give
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Example: Very Important (VI) 1. Qualifications of the person / who leads the group ( i . e . , medical experts, other cancer patients, e t c ) .
Important (I)
Somewhat Important (SI)
Not Important (NI)
you an opportunity t o indicate your s p e c i f i c preferences regarding the organization of support groups.) Please be sure t o check a column for every item. Organizational Features of Cancer Support Groups 1. Qualifications of the person who leads the group ( i . e . , medical experts, other cancer patients, e t c . ) .
VI
I
SI
NI
2. Types of people who make up the group membership ( i . e . , cancer patients only, cancer patients and their family members, e t c . ) .
VI
I
si
NI
3. Location of the group meetings ( i . e . , private homes, hospital, e t c . ) .
VI
I
SI
NI
4. Number of participants in a group.
VI
I
SI
HI
5. Length of the group meetings.
VI
I
SI
NI
6. How often meetings are held ( i . e . , once a week, monthly, e t c . ) .
VI
I
SI
NI
7. Times of the group meetings ( i . e . , mornings, afternoons, evenings, e t c . ) .
VI
I
SI
NI
8. Cost of the group meetings ( i . e . , free, small charge, etc.).
VI
I
SI
NI
9. Duration of the group ( i . e . , offered on an on-going basis, for limited time, e t c . ) .
VI
I
SI
NI
10. Having transportation available t o and from meetings.
VI
I
SI
NI
11. Having childcare available during the meetings.
VI
I
SI
NI
Part C: Preferred Organization of Support Groups DIRECTIONS; Please indicate with a check mark (/) the alternative that best represents your opinion in the following questions. Check only one alternative. 1. Would you most prefer group meetings led by a. Medical experts ( i . e . , doctors, nurses)? b. Psychologists or therapists? c. By group members themselves? d. By other cancer patients with special training in leading groups? e. Other (Please specify) . 2. Would you prefer t o participate in a support group whose members were a l l cancer patients or a group that included both cancer patients and patients with other life-threatening illnesses? a. Only cancer patients with the same kind of cancer b. Only cancer patients but with different kinds of cancer. c. Cancer patients and patients with other life-threatening i l l n e s s e s .
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3. Do you think hospital patients and outpatients should participate in the same support groups or meet separately? a. Separate groups for hospital patients and out-patients. b. Hospital patients and outpatients should be in support group together. 4. Do you believe there should be separate groups for cancer patients whose i l l n e s s has been recently diagnosed and for those who have know about their cancer for a long time? a. Separate groups for patients recently diagnosed and those who have known about their i l l n e s s for a long time? b. Recently diagnosed cancer patients and those who have know about their i l l n e s s for a long time should be in support groups together. 5. Should there be separate groups for cancer patients with more serious cancers than for those with less serious cancers? a. Different groups for those with more Berious cases of cancer. b. Patients with more serious cancers and patients with less serious cancers should be in the same groups. 6. Would you rather participate in a cancer support group designed for: a. Cancer patients only. b. Cancer patients and their families, with patients and families meeting separately. c. Cancer patients and their families, with patients and families meeting together. d. Cancer patients and their families, with a mixture of some separate meetings for patients and families and some meetings that bring the two groups together. 7. Do you feel that adult cancer patients of different age groups should have separate support groups? a. Separate groups for younger and older adults. b. All adult cancer patients should be together in the same group, regardless of age. 8. Would you most prefer group meetings be held: a. In the homes of support group members? b. At the hospital? c. In medical clinics? d. At churches or spiritual centers? e. In community settings? f. Other (Please specify) ? 9. Do you feel group meetings should last a. One hour or less? b. 1 t o 2 hours? c. However much time i s needed? 10. Do you feel the ideal number of group members i s a. 8 or less? b. 9 to 15? c. More than 15? 11. Would you prefer to participate in a group which met: a. Once a week? b. Twice a week? c. Every other week? d. Once a month? 12. At what time would you prefer to attend support group meetings? a. Mornings b. Afternoons c. Evenings d. Any of the above times 13. Do you feel group meetings should: a. Be free of charges? b. Cost members a small amount of money? c. Be paid for by medical insurance?
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14. For how long do you think support groups should be o f f e r e d ? a. Offered f o r a l i m i t e d amount of time such as 6 weeks or 12 weeks. b. Offered on a continuous b a s i s , with new members j o i n i n g a t any time and continuing t o meet with t h e group as long as they wish. c. Offered f o r a l i m i t e d amount of time, but with t h e options t o continue for a longer period i f group members wish t o continue meeting. d. Other (Please s p e c i f y ) . 15. What kind of s t r u c t u r e would you prefer f o r support group meetings? a. Very structured ( i . e . , meetings should have e s t a b l i s h e d t o p i c s and the amount of time spent on each t o p i c should be planned i n advance.). b. Moderately structured ( i . e . , d i s c u s s i o n t o p i c s should be planned f o r at l e a s t some meetings, but the amount of time spent on each t o p i c should not always be planned i n advance; meetings should include some time f o r f r e e d i s c u s s i o n of whatever i s on the minds of t h e group members.). c. Loosely structured ( i . e . , most of the meeting time should be used f o r group members t o t a l k about whatever i s on t h e i r minds.). d. Very structured a t f i r s t , l e s s structured as time goes on. e. Other (Please s p e c i f y ) . 16. What do you b e l i e v e i s the b e s t way t o inform cancer p a t i e n t s about a v a i l a b l e cancer support groups? a. Through p h y s i c i a n s . b. Through nurses. c. Through n o t i c e s on h o s p i t a l / c l i n i c b u l l e t i n boards. d. Through pamphlet a v a i l a b l e i n waiting rooms, exam rooms, e t c . e. Other (Please s p e c i f y ) .
Part D: Participant Background DIRECTIONS: These l a s t few background questions w i l l h e l p us understand support needs of d i f f e r e n t groups of cancer p a t i e n t s . 1. Sex
a. Male
b. Female
2. Age 3. Type of Cancer 4. Present marital s t a t u s a. Never married d. Divorced b. Married e. Widowed c. Separated f. M a r i t a l - l i k e r e l a t i o n s h i p 5. Racial or e t h n i c group a. Caucasian b. Black c. American Indian d. Hispanic
e. Asian or P a c i f i c Islander f. Other (Please s p e c i f y )
6. Total family income (before t a x e s ) a. l e s s than $10,000 d. $40,001 b. $10,000 - $25,000 e . $55,001 c. $25,001 - $40,000 f. $70,001 7. Highest l e v e l of education a. 8th grade or l e s s b. Some high school c. High school graduate d. Some c o l l e g e e. College graduate f. Other (Please s p e c i f y ) 8. Employment s t a t u s a. Employed b. Unemployed
i n 1989 - $55,000 - $70,000 or more
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9. Your present or most recent occupation? (If apply) Your spouse's present or most recent occupation? 10. Have you ever attended a support group for a reason other than cancer? a. Mo b. If yes, for what reason? Please specify. 11. Have you ever attended any type of group for cancer ( i . e . , s e l f - h e l p , support, educational, etc.)? a. No b. If yes, for how long? If you answered rjo t o question 11, please go on t o question 13. If you answered yes t o question 11, please answer question 12. 12. What was your l e v e l of s a t i s f a c t i o n or d i s s a t i s f a c t i o n with the cancer support groups you have attended? Group Name
Very Satisfied
Satisfied
Somewhat Satisfied
Not Satisfied
13. Please check your s a t i s f a c t i o n with your a b i l i t y t o talk comfortably with the following people about concerns related t o your i l l n e s s . Very Satisfied a. b. c. d. e.
Satisfied
Somewhat Satisfied
Not Satisfied
My spouse or close companion. My personal physician. Other medical caregivers. My family members. My r e l i g i o u s or s p i r i t u a l leader
Part E: Additional Background Information DIRECTIONS: Please answer a l l questions that apply t o you. Please be as s p e c i f i c as possible. Feel free t o attach additional paper i f needed. 1. I f you have ever participated in a cancer support group, what was your main reason for going? 2. If you have never participated in a cancer support group, why not? 3. If you attended a support group with which you were not s a t i s f i e d , what was the reason for your d i s s a t i s f a c t i o n ? 4. Please describe any important features of cancer support groups that are not include in t h i s survey. COMMENTS:
Thank you for completing this Survey! We sincerely appreciate your cooperation and participation.
