Background and Context:
BRCA 1/2 mutation carriers have emerged as a group with substantial unmet supportive care needs. However, the relative novelty of testing for genetic mutations that increase cancer risk means few support services exist outside of Familial Cancer Centres. Peer support (PS) has a long history as a supportive care intervention for people with cancer and other chronic diseases, and may be appropriate for carriers, but has not been tested amongst this group.
To describe an innovative, effective PS program for female BRCA1/2 mutation carriers.
The program consisted of regularly scheduled one-on-one phone calls over four months with a trained volunteer (also a mutation carrier). Forty-two peers were recruited and completed the 3-day training program. 105 participants were matched with a peer to receive support.
The average age of peers was 49 years (SD=10), and recipients 44(SD=13).The average number of calls received was 3.7 (SD=2.1), and average length of first call was 33.5 minutes (SD=18.3). Satisfaction with the program was high for both peers and recipients, and 80% of pairs ended their contact through mutual agreement. When asked about preferences for matching pairs, peers and recipients differed in how important age and surgery experience was.
Outcomes/What was learned:
Participants identified several challenges with program contact, highlighting areas for improvement. Peers and recipients were interested in a more flexible approach to contact, including a negotiable call schedule and contact via new mediums (email or text messaging). It may be that a mixed medium intervention, where participants can tailor the method of communication to suit their needs, would be preferable and effective, especially given the participants’ relative youth, though this would need to be tested. The mismatch in importance placed on different characteristics for matching suggests further refinement in the matching process is needed.