Table I.
Survey questions and descriptive results
| Variable | Total Sample (n=184) |
|---|---|
| DEMOGRAPHICS | |
| AGE (%) | |
| < 18 | 4.9 |
| 18–29 | 7.1 |
| 30–49 | 33.7 |
| 50–64 | 37.5 |
| >= 65 | 13.6 |
| Not responded | 3.3 |
| GENDER (%) | |
| Female | 64.7 |
| Male | 30.4 |
| Not responded | 4.9 |
| EDUCATION (%) | |
| Some high school | 19.0 |
| Some college | 40.2 |
| Post graduate | 33.2 |
| Not responded | 4.9 |
| Other | 2.7 |
| RACE AND ETHNICITY (%) | |
| Black or African American | 15.8 |
| American Indian or Alask a Native | 4.9 |
| Asian or Asian American | 2.2 |
| Hispanic or Latino | 7.1 |
| Non-Hispanic White | 62.0 |
| Hawaiian or Other Pacific Islander | 0.5 |
| Not responded | 7.6 |
| MARITAL STATUS (%) | |
| Single | 11.1 |
| A member of an unmarried couple | 5.9 |
| Married | 50.3 |
| Divorced | 20.3 |
| Widowed | 7.8 |
| Not responded | 4.6 |
| EMPLOYMENT (%) | |
| A homemaker | 6.5 |
| A student | 8.7 |
| Self-employed | 9.2 |
| Employed for wages | 34.8 |
| Out of work for less than 1 year | 2.2 |
| Out of work for more than 1 year | 3.3 |
| Retired | 19.0 |
| Unabletowork | 13.0 |
| Not responded | 3.3 |
| PATIENT OR CAREGIVER (%) | |
| Are you a patient or a caregiver of the health problem you identified above? | |
| Patient | 56.5 |
| Caregiver | 13.0 |
| Neither | 3.8 |
| Not responded | 26.6 |
| ILLNESS OF INTEREST | |
| Which illness, health, or wellness problems are you most interested in? Please | |
| specify one. (Open ended) | |
| HIV positive | 2.2 |
| Cancer | 8.2 |
| Diabetes and weight management | 17.9 |
| Heart disease | 3.8 |
| Multiple Sclerosis | 1.6 |
| Parkinson’s disease | 7.1 |
| Fibromyalgia | 3.3 |
| Depression | 6.0 |
| Etc. | 17.9 |
| Not responded | 32.1 |
| WHEN DIAGNOSED | |
|
How long were you or the patient diagnosed with the health problem identified above?(Open ended) |
|
| Less than a year | 9 |
| Between 1 year to 5 years or less | 22 |
| Between 5 years to 10 years or less | 9 |
| Between 10 years to 20 years or less | 11 |
| More than 20 years | 9 |
| Not responded | 40 |
|
READING BEHAVIOR | |
|
Please check how much you agree with the following statements. (% of Strongly Disagree (SD), Disagree (D) Neither agree or disagree (N), Agree (A), Strongly Agree (SA); NR=Non Response (n)) | |
| R_READ_ALL: [I read all messages in online health support groups as much as possible.] |
SD: 12, D: 16, N:26, A: 18, SA: 9; NR=18 |
| R_TRUST_OTHERS: [I trust what people post in the online health support groups I goto.] |
SD: 8, D: 17, N: 36, A: 17, SA:2; NR=20 |
| R_NEED_EVIDENCE: [I need scientific evidence for me to believe what people post in online health support groups.] |
SD: 11, D: 14, N: 29, A: 20, SA: 9; NR=17 |
| R_LOOK_FOR_UNUSUAL_INFO: [I look for unusual information otherwise difficult to find elsewhere.] |
SD: 10, D: 14, N: 29, A: 21, SA: 7; NR=19 |
| R_TARGETED_SEARCH: [I know what information I am looking for, and that is what I look for in the online health community.] |
SD: 11, D: 16, N:29, A: 19, SA: 7; NR=18 |
| R_SELECTIVE_READ: [I selectively read the messages.] | SD: 11, D: 13, N: 27, A: 20, SA: 8; NR=21 |
| R_LOOK_FOR_NEW_MESSAGES: [I regularly visit the online health support groups to look for new messages posted that I haven’t read yet.] |
SD: 12, D: 15, N: 23, A: 20, SA: 11; NR=19 |
| R_OTHER_READ: How do you select which message to read? (Open ended) | |
| • By_topic[“l look for topics that interest or apply to me personally.”] | 24 |
| • By_title_headline [“using the header to determine if the content is relevant to me”] |
9 |
| • All [“I usually try to read them all.”] | 6 |
| • By_reliable_authors [“I pick the individuals I know are reliable and know what their talking about.”] |
5 |
| • Scan_all [“I pretty much scan them all and if I think I have useful input, I input.”] |
4 |
| • By_time [“I try to read the newest ones first sothat I can be current.”] | 3 |
| • Reliable_source[“lf it appears to originate from an established, reliable source”] |
2 |
| • Catch_eye [“Whatever catches my eye”] | 2 |
| • Unanswered_questions [“I read the unanswered questionsto see if there is a topic I could support.”] |
1 |
| • Length [“The longer detailed messages.”] | 1 |
| POSTING BEHAVIOR | |
| a. P_POST_FREQ (%) |
|
| How often do you post messages in online health support groups? | |
| Never | 47 |
| A few times a year | 8 |
| A few times a month | 13 |
| A few times a week | 12 |
| Everyday | 6 |
| No response | 13 |
| Other (Just started) | 1 |
|
Please answer how often you post in the online health support group with the following intentions. |
|
|
(% of Never (1), Rarely (2) Sometimes (3) Often (4) Very Often (5); NR=Non Response)) |
|
| b. P_I_ASK_Q: [I ask questions.] | 1: 33,2: 16, 3:23, 4: 10, 5: 2; NR=17 |
| c. P_I_lNITATE: [I initiate discussions.] | 1: 39,2: 10,3:21, 4: 8, 5: 3; NR=19 |
| d. P_I_ANSWER_QS: [I answer others’ questions.] | 1: 35,2: 10,3: 17, 4: 15, 5: 4; NR=17 |
| e. P_I_SHARE_ PERSONAL: [I share my personal experiences] | 1: 35,2: 10, 3: 19, 4: 14, 5: 5; NR=17 |
| f. P_SHARE_OPINION: [I share my opinions] | 1: 33,2: 14,3: 18, 4: 14, 5: 5; NR=16 |
| g. P_SHARE_USEFUL_INFO: [I share useful information] | 1: 32,2: 10,3: 18, 4: 17, 5: 4; NR=19 |
| h. P_SHARE_EMO_SUPPORT: [I share emotional support with other members.] |
1: 34,2: 10,3: 17, 4: 14, 5: 8; NR=17 |
| i. P_WARN_SPAM: [I warn about spams and advertisements.] | 1: 43,2: 16, 3: 12, 4:6, 5: 4; NR=18 |
| j. P_MEDIATE: [I mediate members to help conversations stay on track] | 1: 47,2: 14, 3: 14, 4: 5, 5: 1; NR=19 |
| k. P_OTHER_INTENTIONS_POSTING: If there are any, please share any other intentions you have in posting messages in the online health support groups. (Open ended) |
|
| • To_share_useful_info[“l feel the need to share things I learn from my own research.”] |
13 |
| • To_share_emotional_support [“To those who need additional inspiration related to belief, confidence, support and prayer.”] |
9 |
| • To_share_personal_experiences [“It helps to have someone to share experiences with. We may have the same disease, but it is unique to each of us, but at the same time there are many commonalities.”] |
4 |
| • To_get_provide_advocacy [“support others in being their own advocates for health care.”] |
4 |
| • To_ask_questions [“To learn and stay abreast of new developments”] |
1 |
| • To_share_opinions [“Something is seriously “broken” in Medicare and needs attention and amendment.”] |
1 |
| • To_share_everydaylife [“You typically post what is going on in your life.”] |
1 |
| VALUES SOUGHT | |
|
The reason for visiting the online health support group is: (% of Not true at all (1), Not True, 1 don’t know, True, Very True (5); NR=Non Response) |
|
| a. V_EXCHANGE_EMO_SUPPORT: [To exchange emotional support] | 1: 14,2: 10,3:21, 4:23, 5: 15; NR=18 |
| b. V_HEAR_OTHERS_EXPERIENCES: [To hear about personal experiences from other patients] |
1: 7,2: 7, 3: 18,4: 33, 5: 16; NR=20 |
| c. V_GET_N ON MAIN STREAM: [Togain non-mainstream information] | 1: 9, 2: 0, 3:24,4: 26, 5: 13; NR=20 |
| d. V_GET_ANSWERS: [To answer [my] questions about the illness] | 1: 13,2: 9, 3:20, 4:27, 5: 10; NR=21 |
| e. V_OTHER_VALUE: If there are other reasons why you participate in the online health support group, please explain. (Open ended) |
|
| • Get_share_information [“I want a community that shares/understands the surrounding issues”] |
16 |
| • Make_personal_connections [“I really want more personal connections with people on the site”] |
6 |
| • Get_share_emotional_support [“I feel less isolated”] | 6 |
| • Get_share_experience [“to provide peer support to others based on my experience of parkinson’s”] |
3 |
| • Share_simple_information [“It’s simply information that the medical community and health workers (like my doula) prefer not to share or don’t really know.”] |
1 |
| • Get_idea_for_the_general_life[“to get other ideas to improve general lifestyle, activities”] |
1 |