Emotional and informational support messages in an online hospice support community

CIN - Computers Informatics Nursing

Volumn 26, Issue 6, 2008, Pages 358-367

  Buis, Lorraine R ^a  

^a VETERANS AFFAIRS MEDICAL CENTER   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; EMOTION; HOSPICE; HUMAN; INTERNET; SOCIAL SUPPORT;

EMOTIONS; HOSPICES; HUMANS; INTERNET; SOCIAL SUPPORT;

EID: 60749084819     PISSN: 15382931     EISSN: None     Source Type: Journal    
DOI: 10.1097/01.NCN.0000336461.94939.97     Document Type: Article

References (78)

1. Cohen S, Syme SL. Issues in the study and application of social support. In: Cohen S, Syme SL, eds. Social Support and Health. Orlando, FL: Academic Press; 1985:2-22.
2. HFA. What is hospice? http://www.hospicefoundation.org/ hospicelnfo/. Accessed August 30, 2007.
3. Connor SR. Hospice: Practice, Pitfalls, and Promise. Washington, DC: Taylor & Francis; 1998.
4. NHPCO. NHPCO's facts and figures-2005 findings. http:// www.nhpco.org/files/public/2005-facts-and-figures.pdf. Accessed September 27, 2007.
5. Christakis NA, Iwashyna TJ. The health impact of health care on families: a matched cohort study of hospice use by decedents and mortality outcomes in surviving, widowed spouses. Soc Sci Med. 2003;57(3):465-475.
6. Miller SC, Mor V, Teno J. Hospice enrollment and pain assessment and management in nursing homes. J PainSymptom Manage. 2003;26(3):791-799.
7. Miller SC, Mor V, Wu N, Gozalo P, Lapane K. Does receipt of hospice care in nursing homes improve the management of pain at the EoL? J Am Geriatr Soc. 2002;50(3):507-515.
8. Cohen S, Wills TA. Stress, social support, and the buffering hypothesis. Psychol Bull. 1985;98(2):310-357.
9. Berkman LF, Syme SL. Social networks, host resistance, and mortality: a nine-year follow-up study of Alameda county residents. Am J Epidemiol. 1979;109(2):186-204.
10. Blazer D. Social support and mortality in an elderly community population. Am J Epidemiol. 1982;115(5):684-694.
11. House JS, Robbins C, Metzner H. The association of social relationships and activities with mortality: prospective evidence from the Tecumseh Community Health Study. Am J Epidemiol. 1982;116(1):123-140.
12. Uchino BN. Social Support and Physical Health: Understanding the Health Consequences of Relationships. New Haven, CT: Yale University Press; 2004.
13. Verheijden MW, Bakx JC, van Weel C, Koelen MA, van Staveren WA. Role of social support in lifestyle-focused weight management interventions. Eur J Clin Nutr. 2005;59(suppl 1):S179-S186.
14. Tang W-R, Aaronson LS, Forbes SA. Quality of life in hospice patients with terminal illness. West J Nurs Res. 2004;26(1): 113-128.
15. Ringdal GI, Ringdal K, Jordh0y MS, Kaasa S. Does social support from family and friends work as a buffer against reactions to stressful life events such as terminal cancer? Palliat Support Care. 2007;5(1):61-69.
16. Goldsmith D, Parks M. Communicative strategies for the risks of seeking social support. In: Duck S, Silver R, eds. Personal Relationships and Social Support. London, England: Sage Publications; 1990:104-121.
17. Vachon MLS, Roger J, Lyall WA, Lancee WJ, Sheldon AR, Freeman SJJ. Predictors and correlates of adaptation to conjugal bereavement. Am J Psychiatry. 139(8):998-1002.
18. Ellifritt J, Nelson KA, Walsh D. Complicated bereavement: a national survey of potential risk factors. Am J Hosp Palliat Care. 2003;20(2):114-120.
19. Kurtz ME, Kurtz JC, Given CW, Given B. Predictors of post- bereavement depressive symptomatology among family caregivers of cancer patients. Support Care Cancer. 1997;5(1):53-60.
20. Buehler JA, Lee HJ. Exploration of home care resources for rural families with cancer. Cancer Nurs. 1992;15(4):299-308.
21. Buckingham RW. The Handbook ofHospice Care. Amherst, MA: Prometheus Books; 1996.
22. Ahmed N, Bestall JC, Ahmedzai SH, Payne SA, Clark D, Noble B. Systematic review of the problems and issues of accessing specialist palliative care by patients, carers and health and social care professionals. Palliat Med. 2004;18(6):525-542.
23. Brickner L, Scannell K, Marquet S, Ackerson L. Barriers to hospice care and referrals: survey of physicians' knowledge, attitudes, and perceptions in a health maintenance organization. J Palliat Med. 2004;7(3):411-418.
24. Feeg VD, Elebiary H. Exploratory study on end-of-life issues: barriers to palliative care and advance directives. Am J Hosp Palliat Care. 2005;22(2):119-124.
25. McGorty EK, Bornstein BH. Barriers to physicians' decisions to discuss hospice: insights gained from the United States hospice model. J Eval Clin Pract. 2003;9(3):363-372.
26. Ogle K, Mavis B, Wang T. Hospice and primary care physicians: attitudes, knowledge, and barriers. Am J Hosp Palliat Care. 2003;20(1):41-51.
27. Cherlin EJ, Barry CL, Prigerson HG, et al. Bereavement services for family caregivers: how often used, why, and why not. J Palliat Med. 2007;10(1):148-158.
28. Pew Internet & American Life Project. Demographics of Internet users. http://www.pewinternet.org/trends/User-Demo-6.15.07.htm. Accessed September 6, 2007.
29. Horrigan JB, Smith A. Home broadband adoption 2007. http:// www.pewinternet.org/pdfs/PIP-Broadband%202007.pdf. Accessed September 6, 2007.
30. Rainie L, Horrigan J. Trends 2005. http://pewresearch.org/assets/ files/trends2005.pdf. Accessed September 25, 2007.
31. White M, Dorman SM. Online support for caregivers: analysis of an Internet Alzheimer mail group. Comput Nurs. 2000;18(4): 168-179.
32. Houston TK, Cooper LA, Ford DE. Internet support groups for depression: a 1-year prospective cohort study. Am J Psychiatry. 2002;159(12):2062- 2068.
33. Powell J, McCarthy N, Eysenbach G. Cross-sectional survey of users of Internet depression communities. BMC Psychiatry. 2003; 3(1):19.
34. Till JE. Evaluation of support groups for women with breast cancer: importance of the navigator role. Health Qual Life Outcomes. 2003;1(1):16.
35. Ziebland S, Chapple A, Dumelow C, Evans J, Prinjha S, Rozmovits L. How the Internet affects patients' experience of cancer: a qualitative study. BMJ. 2004;328(7439):564.
36. Glueckauf RL, Ketterson TU, Loomis JS, Dages P. Online support and education for dementia caregivers: overview, utilization, and initial program evaluation. Telemed J E Health. 2004;10(2): 223-232.
37. Pierce LL, Steiner V, Govoni AL. In-home online support for caregivers of survivors of stroke: a feasibility study. Comput Inform Nurs. 2002;20(4):157-164.
38. White M, Dorman SM. Receiving social support online: implications for health education. Health Educ Res. 2001;16(6):693-707.
39. Davison KP, Pennebaker JW, Dickerson SS. Who talks? The social psychology of illness support groups. Am Psychol. 2000;55(2): 205-217.
40. Eysenbach G, Powell J, Englesakis M, Rizo C, Stern A. Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions. BMJ. 2004;328(7449):1166.
41. Lamberg L. Online empathy for mood disorders: patients turn to Internet support groups. JAMA. 2003;289(23):3073-3077.
42. Ramos JD, Rai-Chaudhuri A, Neill RW. International online discussion lists on chronic myelogenous leukaemia. BMJ. 2004;328(7449):1177-1178.
43. Lester J, Prady S, Finegan Y, Hoch D. Learning from e-patients at Massachusetts General Hospital. BMJ. 2004;328(7449): 1188-1190.
44. Winkelman WJ, Choo CW. Provider-sponsored virtual communities for chronic patients: improving health outcomes through organizational patient-centered knowledge management. Health Expect. 2003;6(4):352-358.
45. Cudney SA, Weinert C. Computer-based support groups. Nursing in cyberspace. Comput Nurs. 2000;18(1):35-43. Quiz 44-46.
46. Monnier J, Laken M, Carter CL. Patient and caregiver interest in Internet-based cancer services. Cancer Pract. 2002;10(6):305-310.
47. Owen JE, Klapow JC, Roth DL, Nabell L, Tucker DC. Improving the effectiveness of adjuvant psychological treatment for women with breast cancer: the feasibility of providing online support. Psychooncology. 2004;13(4):281-292.
48. Barrera M Jr, Glasgow RE, McKay HG, Boles SM, Feil EG. Do Internet-based support interventions change perceptions of social support? An experimental trial of approaches for supporting diabetes self-management. Am J Community Psychol. 2002; 30(5):637-654.
49. Lieberman MA, Golant M, Giese-Davis J, et al. Electronic support groups for breast carcinoma: a clinical trial of effectiveness. Cancer. 2003;97(4):920-925.
50. Madara EJ. The mutual-aid self-help online revolution. Soc Policy. 1997;27(3):20-26.
51. Rhodes SD, Bowie DA, Hergenrather KC. Collecting behavioural data using the world-wide Web: considerations for researchers. J Epidemiol Community Health. 2003;57(1):68-73.
52. Weinrich JD. Strange bedfellows: homosexuality, gay liberation, and the Internet. J Sex Educ Ther. 1997;22(1):58-66.
53. Braithwaite DO, Waldron VR, Finn J. Communication of social support in computer-mediated groups for people with disabilities. Health Commun. 1999;11(2):123-151.
54. Hill WG, Weinert C. An evaluation of an online intervention to provide social support and health education. Comput Inform Nurs. 2004;22(5):282-288.
55. Nonnecke B, Preece J. Silent participants: getting to know lurkers better. In: Lueg C, Fisher D, eds. From Usenet to Cowebs: Interacting With Social Information Spaces. London, England: Springer; 2003:110-132.
56. Perron B. Online support for caregivers of people with a mental illness. Psychiatr Rehabil J. 2002;26(1):70-77.
57. Capitulo KL. Perinatal grief online. MCN Am J Matern Child Nurs. 2004;29(5):305-311.
58. Klemm P, Reppert K, Visich L. A nontraditional cancer support group. The Internet. Comput Nurs. 1998;16(1):31-36.
59. Lasker JN, Sogolow ED, Sharim RR. The role of an online community for people with a rare disease: content analysis of messages posted on a primary biliary cirrhosis mailing list. J Med Internet Res. 2005;7(1):e10.
60. Scharer K. An Internet discussion board for parents of mentally ill young children. J Child Adolesc Psychiatr Nurs. 2005;18(1): 17-25.
61. Sakardi A, Bremberg S. Socially unbiased parenting support on the Internet: a cross-sectional study of users of a large Swedish parenting Website. Child Care Health Dev. 2005;31(1): 43-52.
62. Tichon J, Yellowlees P. Internet social support for children and adolescents. J Telemed Telecare. 2003;9(4):238-240.
63. Weinberg N, Schmale J, Uken J, Wessel K. Online help: cancer patients participate in a computer-mediated support group. Health Soc Work. 1996;21(1):24-29.
64. Willis L, Demiris G, Oliver DP. Internet use by hospice families and providers: a review. J Med Syst. 2007;31(2):97-101.
65. Cutrona CE. Stress and social support: in search of optimal matching. J Soc Clin Psychol. 1990;9(1):3-14.
66. Cutrona CE, Russell DW. Type of social support and specific stress: toward a theory of optimal matching. In: Sarason BR, Sarason IG, Pierce GR, eds. Social Support: An Interactional View. New York, NY: John Wiley; 1990:319-366.
67. Cutrona CE, Suhr JA. Controllability of stressful events and satisfaction with spouse support behaviors. Commun Res. 1992; 19(2):154-174.
68. Turner JW, Grube JA, Meyers J. Developing an optimal match within online communities: an exploration of CMC support communities and traditional support. J Commun. 2001;51(2): 231-251.
69. Walther JB. Computer-mediated communication: impersonal, interpersonal, and hyperpersonal interaction. Commun Res. 1996;23(1):3-43.
70. Riffe D, Lacy S, Fico FG. Analyzing Media Messages: Using Quantitative Content Analysis in Research. Mahwah, NJ: Lawrence Erlbaum Associates; 2005.
71. Lombard M, Snyder-Duch J, Bracken CC. Content analysis in mass communication: assessment and reporting of intercoder reliability. Human Commun Res. 2002;28(4):587-604.
72. Neuendorf KA. The Content Analysis Guidebook. Thousand Oaks, CA: Sage Publications; 2002.
73. Coleman J, Olsen SJ, Sauter PK, et al. The effect of a frequently asked questions module on a pancreatic cancer Web site patient/ family chat room. Cancer Nurs. 2005;28(6):460-468.
74. Meier A, Lyons EJ, Frydman G, Forlenza M, Rimer BK. How cancer survivors provide support on cancer-related Internet mailing lists. J Med Internet Res. 2007;9(2):e12.
75. Nolan MT, Hodgin MB, Olsen SJ, et al. Spiritual issues of family members in a pancreatic cancer chat room. Oncol Nurs Forum. 2006;33(2):239-244.
76. Puchalski CM. Spirituality in health: the role of spirituality in critical care. Crit Care Clin. 2004;20(3):487-504.
77. Puchalski CM. Spirituality, religion, and healing in palliative care. Clin Geriatr Med. 2004;20(4):689-714.
78. Taylor EJ. Spiritual needs of patients with cancer and family caregivers. Cancer Nurs. 2003;26(4):260-266.