Benefits of participation in professionally-facilitated online support groups: quantitative and qualitative outcomes for patients, survivors and family caregivers — ASN Events

Benefits of participation in professionally-facilitated online support groups: quantitative and qualitative outcomes for patients, survivors and family caregivers (#89)

Joanne Stephen 1 , Adina Rojubally 1 , Michael Speca 2 , Jill Turner 3 , Kate Collie 3 , Jill Taylor-Brown 4 , Karen Fergus 5 , Deborah McLeod 6 , Janine Giese-Davis 2 , Wolfgang Linden 7
  1. BC Cancer Agency, Surrey, BC, Canada
  2. Tom Baker Cancer Centre, Calgary, Alberta, Canada
  3. Cross Cancer Institute, Edmonton, Alberta, Canada
  4. Cancer Care Manitoba, Winnipeg, Manitoba, Canada
  5. Sunnybrook Odette Cancer Centres, Toronto, Ontario, Canada
  6. Dalhousie University, Halifax, Nova Scotia, Canada
  7. University of British Columbia , Vancouver, British Columbia, Canada

PURPOSE
We evaluated a pan-Canadian, collaborative initiative: CancerChatCanada. CancerChatCanada is an internet-based service designed to meet professional standards of practice, patient safety and overcome barriers to accessing support regardless of participant type. We report on quantitative and qualitative outcomes gleaned over 4 years of evaluating this initiative, including results from a randomized trial nested within the larger project.

METHOD
We conducted semi-structured interviews and pre-post psychometric assessments of distress and lifestyle interference in several subsamples of cancer patients, survivors and family caregivers, including a randomized sample of young breast cancer survivors. 102 participants were interviewed; 52 participants completed pre-post surveys of distress and illness intrusiveness; and 51 survivors completed pre-post- 3 month follow up surveys. We report here on 1) participant-identified outcomes and 2) psychometric results of pre-post assessment.

SUMMARY OF RESULTS
Over a 45-month period between January 2008 and October 2011, 51 online support groups were conducted with an average of 7 enrollees per group. Quantitative analyses demonstrated statistically significant reductions in emotional distress for patients and caregivers, and significant reductions in lifestyle interference for young breast cancer survivors at 3 months follow-up. Five qualitative themes identified specific benefits of internet-delivered, professionally-facilitated support groups: reaching out from home; resonance and kinship; emotional release; talking with text; and feeling safe.

CONCLUSIONS
Research on the efficacy of internet-delivered interventions is growing, and these data support the emerging trend that professionally-led internet- interventions are efficacious. Professional OSG’s for cancer patients give rise to similar outcomes as professional face-to-face support groups. Benign disinhibition and emotional safety are unique benefits of communicating through text, and may be mechanisms that facilitate outcome.