{"id":97169,"date":"2003-07-16T00:00:00","date_gmt":"2003-07-16T05:00:00","guid":{"rendered":"https:\/\/alpha.pewresearch.org\/pewresearch-org\/2003\/07\/16\/part-2-email-and-support-communities\/"},"modified":"2024-04-14T04:14:24","modified_gmt":"2024-04-14T09:14:24","slug":"part-2-email-and-support-communities","status":"publish","type":"post","link":"https:\/\/alpha.pewresearch.org\/pewresearch-org\/internet\/2003\/07\/16\/part-2-email-and-support-communities\/","title":{"rendered":"Part 2. Email and Support Communities"},"content":{"rendered":"

Introduction<\/h3>\n\n

Internet users support each other online in two major ways: through online communities and through personal emails. In previous studies, the Pew Internet Project has found that 84% of Internet users have contacted online interest groups of varying sorts, from hobbies to politics to religion.[14.numoffset=”14″ Horrigan, John. \u201cOnline Communities: Networks that nurture long-distance relationships and local ties.\u201d (Pew Internet & American Life Project: October 31, 2001.) Available at: https:\/\/alpha.pewresearch.org\/pewresearch-org\/internet\/Reports\/2001\/Online-Communities.aspx<\/a>] Participation in health-related online groups and communities has been steadily rising. In May-June 2001, we found that 36% of Internet users had visited a Web site that provides information or support for people interested in a specific medical condition or personal situation. In September 2002, that number grew to 47% of Internet users, and by December 2002, to 54% of Internet users, or about 63 million Americans. <\/p>\n\n

In addition, about 32 million Americans seek support in a more private form; 30% of email users have sent or received health-related email. About a quarter of email users exchange email with family members about health or medical issues; another quarter do the same with friends. Only 7% exchange emails with doctors or health professionals.\u00a0 Women, better-educated, and more experienced Internet users are more likely to exchange health-related email. Of all those who email about health issues, about 90% find the email useful. <\/p>\n\n

This usefulness and popularity of online support translates into enthusiasm and even passion from e-patients and caregivers for electronic communications. In comments, they describe the value from email and support groups in both emotional and practical terms. A number of themes emerge. On the emotional side, empathy is highly valued; giving support is as important as getting it. On the practical side, support leads to tangible results.<\/p>\n\n

The Internet connects users to emotional support.<\/h3>\n\n

Email users value connecting with others who can empathize from their own first-hand experience. One respondent to our online survey wrote, \u201cI have met people on support forums that share my concerns and problems. We can ask questions of each other and have understanding that people without our problems can\u2019t possibly understand.\u201d Another wrote, \u201cThe Internet put me in contact with others that KNOW what it was and is like living with a disease that can be disabling with many odd symptoms.\u201d And a mother wrote, \u201cEmailing with other mothers of special needs children has been a great way for me to feel linked with women who know what I\u2019m going through.\u201d <\/p>\n\n

Some respondents to our online survey focus on the less tangible issue of depression. A study published in the December 2002 issue of the American Journal of Psychiatry found that 95% of participants in online support groups for depression said communication with other patients alleviated some depression symptoms.[15.numoffset=”15″ Houston, Thomas K., Lisa A. Cooper, and Daniel E. Ford. \u201cInternet Support Groups for Depression: A 1-Year Prospective Cohort Study.\u201d (The American Journal of Psychiatry: December 2002 \u2013 Vol. 159, Issue 12.) Available at: http:\/\/ajp.psychiatryonline.org\/content\/vol159\/issue12\/<\/a>] As one e-patient confided, \u201cJust when I think my life is horrible, I read someone else’s post and they have it worse…makes me feel better.\u201d<\/p>\n\n

Interestingly, we found that many sought out electronic communications as a way to give as well as receive knowledge. Wrote one, \u201cI am an active participant and information flows both directions. I spend at least an hour a day helping others with their medical concerns.\u201d Another respondent wrote, \u201cAs an old timer, I\u2019ll help another MS patient with questions that I might know the answer to.\u201d And another goes out of her way to make herself available, \u201cWhen I sign guest books and what-not, often times people will email me \u2026almost ALWAYS it\u2019s a parent whose child has hydrocephalus[16. Hydrocephalus is characterized by a build-up of spinal fluid in the brain.] and they want to know what their child\u2019s future might hold and what insight I may give them as their child grows up.\u201d <\/p>\n\n

The Internet also connects users to practical help.<\/h3>\n\n

Online support sometimes leads to real results: A recent study of 92 overweight or obese adults showed that individuals who received weekly email counseling lost more weight in a year than similar adults who participated in an Internet weight loss program, but did not receive supportive email.[17.numoffset=”17″ Tate, Deborah F.; Elizabeth H. Jackvony; and Rena R. Wing. \u201cEffects of Internet Behavioral Counseling on Weight Loss in Adults at Risk for Type 2 Diabetes.\u201d (Journal of the American Medical Association<\/em>: April 9, 2003 \u2013 Vol. 289, No. 14.)] Those who corresponded via email with weight loss counselors lost 4.8 percent of their original body weight \u2013 double the loss experienced by the control group.<\/p>\n\n

The good, practical advice is traded on many fronts. One respondent wrote that she corresponds with her sister, \u201cwho knows many chronic pain coping techniques.\u201d \u201cMaybe,\u201d offered another, \u201c(we can) discuss more personally some of the things that we can do to ease some of the symptoms that we have.\u201d One AIDS patient explained, \u201cMy online correspondence with friends infected with HIV+\/AIDS has given me a basis for comparison, as well as tips for staying healthy.\u201d Another respondent wrote about medications, \u201cPatients undergoing drug trials\u2026can compare notes on the Web (like lab rats communicating with each other by tapping on the bars of their cages).\u201d <\/p>\n\n

Email offers efficiencies; it serves as a purely practical tool within many friends-and-family networks for updating groups of people about a loved one\u2019s health condition or for offering health information. Wrote one respondent, \u201cMy father spent 20 days in the ICU for a subarachnoid hemorrhage[18. A subarachnoid hemorrhage is a type of stroke, caused by a break in a blood vessel on the surface of the brain.] in 2002. I was able to communicate with family and friends on a daily basis by sending one email out to all.\u201d \u201cI\u2019ll send articles or links to sites,\u201d wrote one of many, commenting on how electronic communications lets them share the wealth of information they find.<\/p>\n\n

Internet communications cut through all kinds of physical barriers as well, \u201cI often share info via email with people who do not live in close proximity to me.\u201d And it helps create communities of few, far-flung members. One wrote, \u201cI use email a lot. I will ask questions of \u2026other porphyria patients\u2026They are a wealth of information on a very rare disease.\u201d <\/p>\n\n

Of course, electronic communications isn\u2019t the answer for everyone. Sharing personal medical and health information across the Internet requires a certain leap of faith \u2013 or at least a strong sense of privacy and trust. While some e-patients will reach out, using a \u201cpatient-matching service\u201d[19. See \u201cMatching Services Connect People Who Feel Your Pain,\u201d by Tara Parker-Pope, The Wall Street Journal<\/em>, December 17, 2002.] to find someone whose situation is like theirs, through sites like the Association of Cancer Online Resources (acor.org) or the Friends’ Health Connection (friendshealthconnection.org); others show concern about writing with online-only correspondents. Wrote one respondent, \u201cI don\u2019t trust people I meet over the Internet enough to give them my email or personal details.\u201d For others, it\u2019s a matter of comfort with the medium. \u201cI can do better in person,\u201d wrote another, in response to a question about whether they use email to discuss health concerns. <\/p>\n\n

\n

\u201cPatient-matching service\u201d \u2013 a support network that connects people with similar health problems or personal situations<\/p>\n<\/blockquote>\n\n

[Huntington\u2019s Disease]<\/p>\n","protected":false},"excerpt":{"rendered":"

Introduction Internet users support each other online in two major ways: through online communities and through personal emails. 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