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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
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
Aim of paper
To explore non-participation and withdrawal
from online self-help groups
Methods
- Recruitment through self-selection
- Material: Questionary
Participant observation
Qualitative interviews
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
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)
Reasons
1. Too many painful details about cancer
2. Not being ”ill enough”
3. Not finding a legitimate position in the group
4. The duties of everyday life
1. Painful details
“I discovered a 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).
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?
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).
Comment
• Further challenges of including ”all” breast cancer diagnosed women
• Directs attention to the need for similarity in self-help groups
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).
“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)
Comment
• Conventional interaction patterns
• Leadership of the group
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)
Comment
• Requires time
• Personal fulfillment vs activism
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
