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Non-participation and witdrawal from online
self-help groupsTTeC 12.06.06anne-grete.sandau
net_at_telemed.no
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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

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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

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Aim of paper

• To explore non-participation and withdrawal
• from online self-help groups

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Methods

• Recruitment through self-selection
• Material
• Questionary
• Participant observation
• Qualitative interviews

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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

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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)

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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

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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).

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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?

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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).

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Comment

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

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3 Not finding a legitimate position in the group

• if I had been one of these girls, I wouldve
  thought that oh yes, so she finds something or
  other to complain about (B, 51years).

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• 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 Okbut we do not
  want this (A, 51 years)

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Comment

• Conventional interaction patterns
• Leadership of the group

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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)

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Comment

• Requires time
• Personal fulfillment vs activism

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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