Online Support Groups for Women with Metastatic Breast Cancer: A Feasibility Pilot Study

REFERENCES

• Alpers , G. W. , Winzelberg , A. J. , Classen , C. , Roberts , H. , Dev , P. Koopman , C. 2005 . Evaluation of computerized text analysis in an Internet breast cancer support group . Computers in Human Behavior , 21 ( 2 ) : 361 – 376 .
   Google Scholar
• Ancker , J. S. , Carpenter , K. M. , Greene , P. M. , Hoffman , R. , Kukafka , R. Marlow , L. A. V. 2009 . Peer-to-peer communication, cancer prevention and the Internet . Journal of Health Communication , 14 : 38 – 46 .
   PubMed Web of Science ®Google Scholar
• Aranda , S. , Schofield , P. , Weih , L. , Yates , P. , Milne , D. Faulkner , R. 2005 . Mapping the quality of life and unmet needs of urban women with metastatic breast cancer . European Journal of Cancer Care , 14 : 211 – 222 .
   PubMed Web of Science ®Google Scholar
• Bernard , H. R. 2000 . Social research methods: Qualitative and quantitative approaches , Thousand Oaks, CA : Sage .
   Google Scholar
• Bloch , S. and Crouch , E. 1985 . Therapeutic factors in group psychotherapy , New York : Oxford University Press .
   Google Scholar
• Bordeleau , L. , Szalai , J. P. , Ennis , M. , Leszcz , M. , Speca , M. Sela , R. 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 .
   PubMed Web of Science ®Google Scholar
• Bottomley , A. and Therasse , P. 2002 . Quality of life in patients undergoing systemic therapy for advanced breast cancer . The Lancet Oncology , 3 ( 10 ) : 620 – 628 .
   PubMed Web of Science ®Google Scholar
• Brady , M. J. , Cella , D. F. , Mo , F. , Bonomi , A. E. , Tulsky , D. S. Lloyd , S. R. 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 .
   PubMed Web of Science ®Google Scholar
• Butler , L. D. , Koopman , C. , Classen , C. and Spiegel , D. 1999 . Traumatic stress, life events, and emotional support in women with metastatic breast cancer: cancer-related traumatic stress symptoms associated with past and current stressors . Health Psychology , 18 ( 6 ) : 555 – 560 .
   PubMedGoogle Scholar
• Butler , L. D. , Koopman , C. , Cordova , M. J. , Garlan , R. W. , DiMiceli , S. and Spiegel , D. 2003 . Psychological distress and pain significantly increase before death in metastatic breast cancer patients . Psychosomatic Medicine , 65 : 416 – 426 .
   PubMed Web of Science ®Google Scholar
• Changrani , J. , Lieberman , M. , Golant , M. , Rios , P. , Damman , J. and Gany , F. 2008 . Online cancer support groups: Experiences with underserved immigrant Latinas . Primary Psychiatry , 15 ( 10 ) : 55 – 62 .
   Google Scholar
• Classen , C. , Butler , L. D. , Koopman , C. , Miller , E. , DiMiceli , S. Giese-Davis , J. 2001 . Supportive-expressive group therapy and distress in patients with metastatic breast cancer . Archives of General Psychiatry , 38 : 494 – 501 .
   Google Scholar
• 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 .
   Google Scholar
• Cunningham , A. J. , Edmonds , C. V. J. , Jenkins , G. P. , Pollack , H. , Lockwood , G. A. and 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 .
   PubMed Web of Science ®Google Scholar
• Dahlem , N. W. , Zimet , G. D. and Walker , R. R. 1991 . The Multidimensional Scale of Perceived Social Support: A confirmation study . Journal of Clinical Psychology , 47 ( 6 ) : 756 – 761 .
   PubMed Web of Science ®Google Scholar
• Edelman , S. , Bell , D. R. and Kidman , A. D. 1999 . A group cognitive behavior therapy programme with metastatic breast cancer patients . Psycho-Oncology , 8 : 295 – 305 .
   PubMed Web of Science ®Google Scholar
• Edmonds , C. V. I. , Lockwood , G. A. and Cunningham , A. J. 1999 . Psychological responsee to long term group therapy: a randomized trial with metastatic breast cancer patients . Psycho-Oncology , 8 : 74 – 91 .
   PubMed Web of Science ®Google Scholar
• Eysenbach , G. , Powell , J. , Engelsakis , M. , Rizo , C. and 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
   Google Scholar
• Finfgeld , D. L. 2000 . Therapeutic groups online: The good, the bad and the unknown . Issues in Mental Health Nursing , 21 : 241 – 255 .
   PubMedGoogle Scholar
• Ford , M. F. , Jones , M. , Scannell , T. , Powell , A. , Coombes , R. C. and 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 .
   PubMed Web of Science ®Google Scholar
• Fulton , C. 1998 . The prevalence and detection of psychiatric morbidity in patients with metastatic breast cancer . European Journal of Cancer Care , 7 : 232 – 239 .
   PubMedGoogle Scholar
• Furukawa , T. , Hirai , T. , Kitamura , T. and 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 .
   PubMed Web of Science ®Google Scholar
• Giese-Davis , J. , Koopman , C. , Butler , L. , Classen , C. , Cordova , M. Fobair , P. 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 .
   PubMed Web of Science ®Google Scholar
• Goodwin , P. J. , Leszcz , M. , Ennis , M. , Koopmans , J. , Vincent , L. Guther , H. 2001 . The effect of group psychosocial support on survival in metastatic breast cancer . New England Journal of Medicine , 345 ( 24 ) : 1719 – 1726 .
   PubMed Web of Science ®Google Scholar
• Groenvold , M. 1999 . Methodological issues in the assessment of health-related quality of life in palliative care trials . Acta Anaesthesiologica Scandinavica , 43 : 948 – 953 .
   PubMedGoogle Scholar
• Gustafson , D. H. , Hawkins , R. , Pingree , S. , McTavish , F. , Arora , N. K. Mendenhall , J. 2001 . Effect of computer support on younger women with breast cancer . Journal of General Internal Medicine , 16 : 435 – 445 .
   PubMed Web of Science ®Google Scholar
• Hakamies-Blomqvist , L. , Luoma , M.-L. , Sjostrom , J. , Pluzanska , A. , Sjodin , M. Mouridsen , H. 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 .
   PubMed Web of Science ®Google Scholar
• Hoybye , M. T. , Johansen , C. and Tjornhoj-Thomsen , T. 2005 . Online interaction. Effects of storytelling in an internet breast cancer support group . Psycho-Oncology , 14 : 211 – 220 .
   PubMed Web of Science ®Google Scholar
• Ingham , J. , Seidman , A. , Yao , T.-J. , Lepore , J. and 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 .
   PubMedGoogle Scholar
• Kieren , D. K. , Nabholtz , J.-M. , Makar , K. , Cumming , C. E. , Lees , A. W. Hundleby , M. 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 .
   Google Scholar
• Kramer , J. A. , Curran , D. , Piccart , M. , de Haes , J. C. J. M. , Brunig , P. F. Klijn , J. G. M. 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 .
   PubMed Web of Science ®Google Scholar
• Lemieux , J. , Beaton , D. E. , Hogg-Johnson , S. , Bordeleau , L. J. , Hunter , J. and 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 .
   PubMedGoogle Scholar
• Lidgren , M. , Wilding , N. , Jonsson , B. and Rehnberg , C. 2007 . Health related quality of life in different states of breast cancer . Quality of Life Research , 16 ( 6 ) : 1073 – 1081 .
   PubMed Web of Science ®Google Scholar
• Lieberman , M. , Golant , M. , Giese-Davis , J. , Winzlenberg , A. , Benjamin , H. Humphreys , K. 2003 . Electronic support groups for breast carcinoma . Cancer , 97 ( 4 ) : 920 – 925 .
   PubMed Web of Science ®Google Scholar
• Lieberman , M. A. and Goldstein , B. A. 2005 . Self-help online: an outcome evaluation of breast cancer bulletin boards . Journal of Health Psychology , 10 ( 6 ) : 855 – 862 .
   PubMed Web of Science ®Google Scholar
• 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
   Google Scholar
• Lloyd-Williams , M. and Friedman , T. 2001 . Depression in palliative care patients—A prospective study . European Journal of Cancer Care , 10 : 270 – 274 .
   PubMed Web of Science ®Google Scholar
• Love , S. 2005 . Dr. Susan Love's breast book , 2nd ed. , Reading, MA : Addison-Wesley .
   Google Scholar
• Luoma , M.-L. and 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 .
   PubMed Web of Science ®Google Scholar
• Mahon , S. M. , Cella , D. F. and Donovan , M. I. 1990 . Psychosocial adjustment to recurrent cancer . Oncology Nursing Forum , 1 ( Suppl ) : 47 – 54 .
   Google Scholar
• Mayer , M. 1998 . Advanced breast cancer: A guide to living with metastatic disease , Cambridge, MA : Patient-Centered Guides .
   Google Scholar
• McLachlan , S.-A. , Devins , G. M. and 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 .
   PubMed Web of Science ®Google Scholar
• Morris , T. , Pettingale , K. and Haybittle , J. 1992 . Psychological response to cancer diagnosis and disease outcome in patients with breast cancer and lymphoma . Psycho-Oncology , 1 : 105 – 114 .
   Google Scholar
• Oken , M. M. , Creech , R. H. , Tormey , D. C. , Horton , J. , Davis , T. E. and Carbone , P. P. 1982 . Toxicity and response criteria of the Eastern Cooperative Oncology Group . American Journal of Clinical Oncology , 5 : 649 – 655 .
   PubMed Web of Science ®Google Scholar
• Ozkan , S. and Ogce , F. 2008 . Importance of social support for functional status in cancer patients . Asian Pacific Journal of Cancer Prevention , 9 : 601 – 604 .
   PubMed Web of Science ®Google Scholar
• Payne , S. A. 1992 . A study of quality of life in cancer patients receiving palliative chemotherapy . Social Science & Medicine , 35 : 1505 – 1509 .
   PubMed Web of Science ®Google Scholar
• Pew Internet & American Life Project . 2008 . Internet activities Retrieved April 2, 2008, from http://www.pewinternet.org/trends/Internet_Activities_2.15.08.htm
   Google Scholar
• Posthuma , B. W. 1999 . Small groups in counseling and therapy: process and leadership , 3rd ed. , Boston : Allyn and Bacon .
   Google Scholar
• Price , J. E. 2004 . “ Concepts and mechanisms of breast cancer metastasis ” . In The breast: Comprehensive management of benign and malignant disorders , 3rd ed. , Edited by: Bland , K. I. and Copeland , E. M. St. Louis, MO : Elsevier .
   Google Scholar
• Rabbani , S. A. and Mazar , A. P. 2007 . Evaluating distant metastases in breast cancer: from biology to outcomes . Cancer and Metastasis Reviews , 26 : 663 – 674 .
   PubMed Web of Science ®Google Scholar
• 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 .
   Web of Science ®Google Scholar
• Reed , E. , Simmonds , P. and 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 .
   Google Scholar
• Rodgers , S. and 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
   Web of Science ®Google Scholar
• Rosenfeld , B. , Roth , A. J. , Gandhi , S. and Penson , D. 2004 . Differences in health-related quality of life of prostate cancer patients based on stage of cancer . Psycho-Oncology , 13 : 800 – 807 .
   PubMed Web of Science ®Google Scholar
• 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 .
   PubMed Web of Science ®Google Scholar
• Sharf , B. F. 1997 . Communicating breast cancer online: Support and empowerment on the Internet . Women & Health , 26 : 65 – 84 .
   PubMed Web of Science ®Google Scholar
• Shaw , B. , Han , J. Y. , Kim , E. , Gustafson , D. , Hawkins , R. Cleary , J. 2007 . Effects of prayer and religious expression within computer support groups on women with breast cancer . Psycho-Oncology , 16 : 676 – 687 .
   PubMed Web of Science ®Google Scholar
• Spiegel , D. , Bloom , J. R. , Kramer , H. C. and Gottheil , E. 1989 . Effect of psychosocial treatment on survival of patients with metastatic breast cancer . Lancet , 2 ( 8668 ) : 888 – 891 .
   PubMed Web of Science ®Google Scholar
• Spiegel , D. , Bloom , J. R. and Yalom , I. D. 1981 . Group support for patients with metastatic breast cancer . Archives of General Psychiatry , 38 : 527 – 533 .
   PubMed Web of Science ®Google Scholar
• Stevens , M. J. and Duttlinger , J. E. 1998 . Correlates of participation in a breast cancer support group . Journal of Psychosomatic Research , 45 ( 3 ) : 263 – 275 .
   PubMed Web of Science ®Google Scholar
• Sutherland , H. J. , Lockwood , G. A. and 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 .
   PubMed Web of Science ®Google Scholar
• van Uden-Kraan , C. F. , Drossaert , C. H. C. , Taal , E. , Lebrun , C. E. I. , Drossaers-Bakker , K. W. Smit , W. M. 2008 . Coping with somatic illnesses in online support groups: Do the feared disadvantages actually occur? . Computers in Human Behavior , 24 ( 2 ) : 309 – 324 .
   Web of Science ®Google Scholar
• Vilhauer , R. P. 2008 . A qualitative study of the experiences of women with metastatic breast cancer . Palliative and Supportive Care , 6 ( 3 ) : 249 – 258 .
   PubMedGoogle Scholar
• Vilhauer , R. P. 2009 . Perceived benefits of online support groups for women with metastatic breast cancer . Women & Health , 49 ( 5 ) : 381 – 404 .
   PubMed Web of Science ®Google Scholar
• Voogt , E. , Van Der Heide , A. , Van Leeuwen , A. F. , Visser , A. P. , Cleiren , M. P. H. D. Passchier , J. 2005 . Positive and negative affect after diagnosis of advanced cancer . Psycho-Oncology , 14 : 262 – 273 .
   PubMed Web of Science ®Google Scholar
• Watson , D. , Clark , L. A. and 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 .
   PubMed Web of Science ®Google Scholar
• Weinberg , N. , Uken , J. S. , Schmale , J. and Adamek , M. 1995 . Therapeutic factors: Their presence in a computer-mediated support group . Social Work with Groups , 18 ( 4 ) : 57 – 69 .
   Google Scholar
• 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 .
   PubMed Web of Science ®Google Scholar
• Weinfurt , K. P. , Castel , L. D. , Li , Y. , Timble , J. W. , Glendenning , G. A. and 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 .
   PubMed Web of Science ®Google Scholar
• Winzelberg , A. J. , Classen , C. , Alpers , G. W. , Roberts , H. , Koopman , C. Adams , R. E. 2003 . Evaluation of an Internet support group for women with primary breast cancer . Cancer , 97 ( 5 ) : 1164 – 1173 .
   PubMed Web of Science ®Google Scholar
• Yalom , I. D. 1995 . The theory and practice of group psychotherapy , 4th ed , New York : Basic Books .
   Google Scholar