Background

1. ”Non-participation and witdrawal from online self-help groups”TTeC 12.06.06anne-grete.sandaunet@telemed.no

2. Background • Online SHGs one of the most promising aspects of e-health • Lay supplement to professional health care (National plan for self-help) • Subject of considerable research interest • High drop-out rates in studies which is scarcely considered

3. The study • PhD-work • Action oriented study of potential benefits of online SHGs • Included establishment of an online service for Norwegian breast cancer patients (nov 03- feb 05) • Non-participation and withdrawal emerged as an essential feature

4. Aim of paper To explore non-participation and withdrawal from online self-help groups

5. Methods • Recruitment through self-selection • Material: Questionary Participant observation Qualitative interviews

6. Participants and participation • 40 participants (38 included in analysis) • Age 32 to 63 • Well educated • Comfortable with the Internet • 1114 postings, 2.2 postings each day

7. Non-participation and withdrawal • 12 women defined as active users Continious and/or engaged presence 7 had experienced recurrence of the cancer • 26 women defined as drop-outs: 9 without any messages 18 with one or more messages • 25 interviews (8 /17)

8. Reasons • Too many painful details about cancer • Not being ”ill enough” • Not finding a legitimate position in the group • The duties of everyday life

9. 1. Painful details “I discovereda lot of nasty things in the group” (M, newly diagnosed, 38 years) “I was just diagnosed with this myself. To hear about all the problems and all recurrences got too much. I had to quit and find information other places” (S, newly diagnosed,56 years).

10. Comment • the crucial role of remaining in the hope for recovery • the ”power of the example” • Is it useful to address ”all” women who are diagnosed with breast cancer?

11. 2. Not being ill enough ”So, for me, my cancer illness, it was just a small part of my life - there are so many other things.” (Å, 53 years) “It would have been easier for me to participate if more women could talk about prosthesis (E, 46 years).

12. Comment • Further challenges of including ”all” breast cancer diagnosed women • Directs attention to the need for similarity in self-help groups

13. 3 Not finding a legitimate position in the group “ if I had been one of these girls, I would’ve thought that ‘ oh yes, so she finds something or other to complain about’” (B, 51years).

14. “if you are trying to mention that you are struggling mentally, you do not get any response. They say that “of course, everybody feels like that once in a while”. Of course they do!! But in a way, you feel they say that “Ok…but we do not want this”” (A, 51 years)

15. Comment • Conventional interaction patterns • Leadership of the group

16. The duties of everyday life ”It is simply lack of time. I do give priority to the group, but I have been so stressed lately” (G, 36 years)

17. Comment • Requires time • Personal fulfillment vs activism

18. Conclusions Non-participation and withdrawal from this online self-help group call for more attention paid to organisational issues (who is addressed, leadership). However, it also indicates a need for more knowledge about the experience of breast cancer and how breast cancer patients adopt the active and involved patient role