Online support groups for women with metastatic breast cancer: A feasibility pilot study

Journal of Psychosocial Oncology

Volumn 28, Issue 5, 2010, Pages 560-586

  Vilhauer, Ruvanee P ^a   McClintock, Martha K ^b   Matthews, Alicia K ^c  

^a Felician College   (United States)

^b UNIVERSITY OF CHICAGO   (United States)

^c UNIVERSITY OF ILLINOIS AT CHICAGO   (United States)

Author keywords

computer mediated support; metastatic breast cancer; online support; peer support groups; social support

Indexed keywords

ADULT; AGED; ARTICLE; BREAST CANCER; BREAST METASTASIS; CLINICAL ARTICLE; ETHICS; FEASIBILITY STUDY; FEMALE; HUMAN; ONLINE SYSTEM; OUTCOME ASSESSMENT; PEER GROUP; PILOT STUDY; QUALITY OF LIFE; SAMPLE SIZE; SUPPORT GROUP; WOMEN'S HEALTH;

ADAPTATION, PSYCHOLOGICAL; ADULT; BREAST NEOPLASMS; DISEASE PROGRESSION; FEASIBILITY STUDIES; FEMALE; HEALTH SERVICES ACCESSIBILITY; HUMANS; INTERNET; MIDDLE AGED; NEOPLASM STAGING; PATIENT SATISFACTION; PEER GROUP; PILOT PROJECTS; SELF-HELP GROUPS;

EID: 77955969055     PISSN: 07347332     EISSN: 15407586     Source Type: Journal    
DOI: 10.1080/07347332.2010.504504     Document Type: Article

References (71)

1. Alpers, G.W., Winzelberg, A.J., Classen, C., Roberts, H., Dev, P., Koopman, C., et al.(2005).Evaluation of computerized text analysis in an Internet breast cancer support group.Computers in Human Behavior 21(2), 361-376.
2. Ancker, J.S., Carpenter, K.M., Greene, P.M., Hoffman, R., Kukafka, R., Marlow, L.A.V., et al.(2009).Peer-to-peer communication, cancer prevention and the Internet.Journal of Health Communication, 14, 38-46.
3. Aranda, S., Schofield, P., Weih, L., Yates, P., Milne, D., Faulkner, R., et al.(2005).Mapping the quality of life and unmet needs of urban women with metastatic breast cancer.European Journal of Cancer Care, 14, 211-222.
4. Bernard, H.R. (2000).Social research methods: Qualitative and quantitative approaches. Thousand Oaks, CA: Sage.
5. Bloch, S., & Crouch, E. (1985). Therapeutic factors in group psychotherapy.New York: Oxford University Press.
6. Bordeleau, L., Szalai, J.P., Ennis, M., Leszcz, M., Speca, M., Sela, R., et al.(2003).Quality of life in a randomized trial of group psychosocial support in metastatic breast cancer: Overall effects of the intervention and an exploration of missing data.Journal of Clinical Oncology, 21(10), 1944-1951.
7. Bottomley, A., & Therasse, P.(2002).Quality of life in patients undergoing systemic therapy for advanced breast cancer.The Lancet Oncology, 3(10), 620-628.
8. Brady, M.J., Cella, D.F., Mo, F., Bonomi, A.E., Tulsky, D.S., Lloyd, S.R., et al.(1997).Reliability and validity of the Functional Assessment of Cancer Therapy-Breast (FACT-B) quality of life instrument.Journal of Clinical Oncology, 15, 974-996.
9. Butler, L.D., Koopman, C., Classen, C., & Spiegel, D.(1999).Traumatic stress, life events, and emotional support in women with metastatic breast cancer: cancerrelated traumatic stress symptoms associated with past and current stressors.Health Psychology, 18(6), 555-560.
10. Butler, L.D., Koopman, C., Cordova, M.J., Garlan, R.W., DiMiceli, S., & Spiegel, D.(2003).Psychological distress and pain significantly increase before death in metastatic breast cancer patients.Psychosomatic Medicine, 65, 416-426.
11. Changrani, J., Lieberman, M., Golant, M., Rios, P., Damman, J., & Gany, F.(2008).Online cancer support groups: Experiences with underserved immigrant Latinas.Primary Psychiatry, 15(10), 55-62.
12. Classen, C., Butler, L.D., Koopman, C., Miller, E., DiMiceli, S., Giese-Davis, J., et al.(2001).Supportive-expressive group therapy and distress in patients with metastatic breast cancer.Archives of General Psychiatry, 38, 494-501.
13. Costantino, J.(2002).The impact of hormonal treatments on quality of life of patients with metastatic breast cancer.Clinical Therapeutics, 24(Suppl C), 26-42.
14. Cunningham, A.J., Edmonds, C.V.J., Jenkins, G.P., Pollack, H., Lockwood, G.A., & Warr, D.(1998).A randomized controlled trial of the effects of group psychological therapy on survival in women with metastatic breast cancer.Psycho- Oncology, 7, 508-517.
15. Dahlem, N.W., Zimet, G.D., & Walker, R.R. (1991).The Multidimensional Scale of Perceived Social Support: A confirmation study. Journal of Clinical Psychology, 47(6), 756-761.
16. Edelman, S., Bell, D.R., & Kidman, A.D.(1999).A group cognitive behavior therapy programme with metastatic breast cancer patients. Psycho-Oncology, 8, 295-305.
17. Edmonds, C.V.I., Lockwood, G.A., & Cunningham, A.J.(1999). Psychological responsee to long term group therapy: a randomized trial with metastatic breast cancer patients.Psycho-Oncology, 8, 74-91.
18. Eysenbach, G., Powell, J., Engelsakis, M., Rizo, C., & Stern, A.(2004).Health related virtual communities and electronic support groups: Systematic review of the effects of online peer to peer interactions.Retrieved from http://www.bmj.com/cgi/reprint/328/7449/1166.
19. Finfgeld, D.L.(2000).Therapeutic groups online: The good, the bad and the unknown.Issues in Mental Health Nursing, 21, 241-255.
20. Ford, M.F., Jones, M., Scannell, T., Powell, A., Coombes, R.C., & Evans, C.(1990).Is group psychotherapy feasible for oncology outpatient attenders selected on the basis of psychological morbidity? British Journal of Cancer, 62(4), 624-626.
21. Fulton, C.(1998).The prevalence and detection of psychiatric morbidity in patients with metastatic breast cancer.European Journal of Cancer Care, 7, 232-239.
22. Furukawa, T., Hirai, T., Kitamura, T., & Takahashi, K.(1997).Application of the Center for Epidemiologic Studies Depression Scale among first-visit psychiatric patients: A new approach to improve its performance. Journal of Affective Disorders, 46, 1-13.
23. Giese-Davis, J., Koopman, C., Butler, L., Classen, C., Cordova, M., Fobair, P., et al. (2002).Change in emotion-regulation strategy for women with metastatic breast cancer following supportive-expressive group therapy. Journal of Consulting and Clinical Psychology, 70(4), 916-925.
24. Goodwin, P.J., Leszcz, M., Ennis, M., Koopmans, J., Vincent, L., Guther, H., et al.(2001).The effect of group psychosocial support on survival in metastatic breast cancer.New England Journal of Medicine, 345(24), 1719-1726.
25. Groenvold, M.(1999).Methodological issues in the assessment of health-related quality of life in palliative care trials.Acta Anaesthesiologica Scandinavica, 43, 948-953.
26. Gustafson, D.H., Hawkins, R., Pingree, S., McTavish, F., Arora, N.K., Mendenhall, J., et al.(2001).Effect of computer support on younger women with breast cancer.Journal of General Internal Medicine, 16, 435-445.
27. Hakamies-Blomqvist, L., Luoma, M.-L., Sjostrom, J., Pluzanska, A., Sjodin, M., Mouridsen, H., et al.(2000).Quality of life in patients with metastatic breast cancer receiving either docetaxel or sequential methotrexate and 5-fluorouracil.A multicenter randomized phase III trial by the Scandinavian Breast Group.European Journal of Cancer, 36, 1411-1417.
28. Hoybye, M.T., Johansen, C., & Tjornhoj-Thomsen, T.(2005).Online interaction.Effects of storytelling in an internet breast cancer support group.Psycho-Oncology, 14, 211-220.
29. Ingham, J., Seidman, A., Yao, T.-J., Lepore, J., & Portenoy, R.(1996).An exploratory study of frequent pain measurement in a cancer clinical trial.Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 5(5), 503-507.
30. Kieren, D.K., Nabholtz, J.-M., Makar, K., Cumming, C.E., Lees, A.W., Hundleby, M., et al.(1997).Sexuality, body image and quality of life after high dose or conventional chemotherapy for metastatic breast cancer.Canadian Journal of Human Sexuality, 6(1), 1-8.
31. Kramer, J.A., Curran, D., Piccart, M., de Haes, J.C.J.M., Brunig, P.F., Klijn, J.G.M., et al.(2000).Randomised trial of paclitaxel versus doxourubicin as first-line chemotherapy for advanced breast cancer: Quality of life evaluation using the EORTC QLQ-C30 and the Rotterdam Symptom Checklist.European Journal of Cancer, 36, 1488-1497.
32. Lemieux, J., Beaton, D.E., Hogg-Johnson, S., Bordeleau, L.J., Hunter, J., & Goodwin, P.J.(2007).Responsiveness to change to change due to supportive-expressive group therapy, improvement in mood and disease progression in women with metastatic breast cancer.Quality of Life Research, 16, 1007-1017.
33. Lidgren, M., Wilding, N., Jonsson, B., & Rehnberg, C.(2007).Health related quality of life in different states of breast cancer.Quality of Life Research, 16(6), 1073-1081.
34. Lieberman, M., Golant, M., Giese-Davis, J., Winzlenberg, A., Benjamin, H., Humphreys, K., et al.(2003).Electronic support groups for breast carcinoma.Cancer, 97(4), 920-925.
35. Lieberman, M.A., & Goldstein, B.A.(2005).Self-help online: an outcome evaluation of breast cancer bulletin boards.Journal of Health Psychology, 10(6), 855-862.
36. Lewis, O.(2001).Welcome to the club noone wants to join: cyberspace support groups aid the dying and the bereaved.Pew Internet and American Life Project.Retrieved November 21, 2008, from http://www.pewinternet.org/PPF/r/ 24/presentation display.asp.
37. Lloyd-Williams, M., & Friedman, T.(2001).Depression in palliative care patients-A prospective study.European Journal of Cancer Care, 10, 270-274.
38. Love, S.(2005).Dr.Susan Loves breast book (2nd ed.).Reading, MA: Addison- Wesley.
39. Luoma, M.-L., & Hakamies-Blomqvist, L.(2004).The meaning of quality of life in patients being treated for advanced breast cancer: A qualitative study.Psycho- Oncology, 13, 729-739.
40. Mahon, S.M., Cella, D.F., & Donovan, M.I.(1990).Psychosocial adjustment to recurrent cancer.Oncology Nursing Forum, 1(Suppl), 47-54.
41. Mayer, M. (1998).Advanced breast cancer: A guide to living with metastatic disease. Cambridge, MA: Patient-Centered Guides.
42. McLachlan, S.-A., Devins, G.M., & Goodwin, P.J.(1999).Factor analysis of the psychosocial items of the EORTC QLQ-C30 in metastatic breast cancer patients participating in a psychosocial intervention study.Quality of Life Research, 8, 311-317.
43. Morris, T., Pettingale, K., & Haybittle, J.(1992).Psychological response to cancer diagnosis and disease outcome in patients with breast cancer and lymphoma.Psycho-Oncology, 1, 105-114.
44. Oken, M .M., Creech, R.H., Tormey, D.C., Horton, J., Davis, T.E., & Carbone, P.P.(1982).Toxicity and response criteria of the Eastern Cooperative Oncology Group.American Journal of Clinical Oncology, 5, 649-655.
45. Ozkan, S., & Ogce, F.(2008).Importance of social support for functional status in cancer patients.Asian Pacific Journal of Cancer Prevention, 9, 601-604.
46. Payne, S.A.(1992).A study of quality of life in cancer patients receiving palliative chemotherapy.Social Science & Medicine, 35, 1505-1509.
47. Pew Internet & American Life Project.(2008).Internet activities.Retrieved April 2, 2008, from http://www.pewinternet.org/trends/ Internet Activities 2.15.08.htm.
48. Posthuma, B.W.(1999).Small groups in counseling and therapy: process and leadership (3rd ed.).Boston: Allyn and Bacon.
49. Price, J.E. (2004).Concepts and mechanisms of breast cancer metastasis.In K.I.Bland & E.M.Copeland (Eds.), The breast: Comprehensive management of benign and malignant disorders (3rd ed.).St.Louis, MO: Elsevier.
50. Rabbani, S.A., & Mazar, A.P.(2007).Evaluating distant metastases in breast cancer: from biology to outcomes.Cancer and Metastasis Reviews, 26, 663-674.
51. Radloff, L.S.(1977).The CES-D Scale: A self-report depression scale for depression in the general population.Applied Psychological Measurement, 1(3), 385-401.
52. Reed, E., Simmonds, P., & Corner, J.(2009).Surveying the experience of living with metastatic breast cancer: Comparing face-to-face and online recruitment. Journal of Research in Nursing, 14(1), 43-55.
53. Rodgers, S., & Chen, Q.(2005).Internet community group participation: Psychosocial benefits for women with breast cancer.Journal of Computer-Mediated Communication, 10(4).Retrieved March 17, 2008, from http://jcmc.indiana.edu/ vol10/ issue4/rodgers.html.
54. Rosenfeld, B., Roth, A.J., Gandhi, S., & Penson, D.(2004).Differences in healthrelated quality of life of prostate cancer patients based on stage of cancer.Psycho-Oncology 13, 800-807.
55. Sandaunet, A. (2008).The challenge of fitting in: Non-participation and withdrawal from an online self-help group for breast cancer patients. Sociology of Health & Illness, 30(1), 131-144.
56. Sharf, B.F.(1997).Communicating breast cancer online: Support and empowerment on the Internet.Women & Health, 26, 65-84.
57. Shaw, B., Han, J.Y., Kim, E., Gustafson, D., Hawkins, R., Cleary, J., et al.(2007).Effects of prayer and religious expression within computer support groups on women with breast cancer.Psycho-Oncology, 16, 676-687.
58. Spiegel, D., Bloom, J.R., Kramer, H.C., & Gottheil, E.(1989).Effect of psychosocial treatment on survival of patients with metastatic breast cancer.Lancet, 2(8668), 888-891.
59. Spiegel, D., Bloom, J.R., & Yalom, I.D.(1981).Group support for patients with metastatic breast cancer. Archives of General Psychiatry, 38, 527-533.
60. Stevens, M.J., & Duttlinger, J.E.(1998).Correlates of participation in a breast cancer support group.Journal of Psychosomatic Research, 45(3), 263-275.
61. Sutherland, H.J., Lockwood, G.A., & Boyd, N.F.(1990).Ratings of the importance of quality of life variables: therapeutic implications for patients with metastatic breast cancer.Journal of Clinical Epidemiology, 43(7), 661-666.
62. van Uden-Kraan, C.F., Drossaert, C.H.C., Taal, E., Lebrun, C.E.I., Drossaers- Bakker, K.W., Smit, W.M., et al.(2008).Coping with somatic illnesses in online support groups: Do the feared disadvantages actually occur? Computers in Human Behavior, 24(2), 309-324.
63. Vilhauer, R.P.(2008).A qualitative study of the experiences of women with metastatic breast cancer.Palliative and Supportive Care, 6(3), 249-258.
64. Vilhauer, R.P.(2009).Perceived benefits of online support groups for women with metastatic breast cancer.Women & Health, 49(5), 381-404.
65. Voogt, E., Van Der Heide, A., Van Leeuwen, A.F., Visser, A.P., Cleiren, M.P.H.D., Passchier, J., et al.(2005).Positive and negative affect after diagnosis of advanced cancer.Psycho-Oncology, 14, 262-273.
66. Watson, D., Clark, L.A., & Tellegen, A.(1988).Development and validation of brief measures of positive and negative affect: The PANAS scales. Journal of Personality and Social Psychology, 54(6), 1063-1070.
67. Weinberg, N., Uken, J.S., Schmale, J., & Adamek, M.(1995).Therapeutic factors: Their presence in a computer-mediated support group. Social Work with Groups, 18(4), 57-69.
68. Winefield, H.R.(2005).Support provision and emotional work in an Internet support group for cancer patients.Patient Education and Counseling, 62(2), 193-197.
69. Weinfurt, K.P., Castel, L.D., Li, Y., Timble, J.W., Glendenning, G.A., & Schulman, K.A.(2004).Health-related quality of life among patients with breast cancer receiving zoledronic acid or pamidronate disodium for metastatic bone lesions.Medical Care, 42(2), 164-175.
70. Winzelberg, A.J., Classen, C., Alpers, G.W., Roberts, H., Koopman, C., Adams, R.E., et al.(2003).Evaluation of an Internet support group for women with primary breast cancer.Cancer, 97(5), 1164-1173.
71. Yalom, I.D.(1995).The theory and practice of group psychotherapy (4th ed).New York: Basic Books.