Implementing a telephone based peer support intervention for women with a BRCA1/2 mutation

Abstract

Women with a BRCA1/2 gene mutation face complex risk management decisions and communication issues that can lead to increased levels of distress and unmet needs. We describe the implementation of a peer-support program that aims to reduce distress among women with a BRCA1/2 mutation, including peer and support recipient satisfaction with the program, challenges and lessons learnt. Participants with a BRCA1/2 mutation were matched with a trained peer volunteer (also a mutation carrier) to have regular one-on-one phone calls, over 4 months. Details of the calls, including topics discussed, time spent and number, were collected. Peers and recipients completed surveys assessing how they felt the contact went, satisfaction with the program, and preferences for matching. Satisfaction with the program was high for both peers and recipients. 80% of pairs ended contact through mutual agreement. Peers and recipients differed in the importance placed on age and surgery experience to determine matches. The most challenging aspect of the program for peers was difficulty in contacting recipients. Peer support for women with a BRCA1/2 mutation is feasible. However, to encourage continued involvement by peers and recipients greater flexibility in the method and delivery of contact is needed. We advocate the use of text-messaging and/or email as mechanisms for pairs to arrange and maintain contact. These strategies should be in addition to, rather than replacing, calls. A mixed medium intervention, where recipients can tailor the method of communication to suit their needs, may be preferable and effective, though this would need to be tested.

Perspectives of Women Considering Bilateral Prophylactic Mastectomy and their Peers towards a Telephone‐Based Peer Support Intervention

“…Although it was discouraged in the present study, one peer decided to provide her e-mail address. This trend has been previously reported (Farrelly et al 2015). It may be possible that allowing flexibility in contact methods could facilitate communication, considering the new and constantly evolving contemporary means of communication.…”

“…Interestingly, most recipients chose to receive only one call, suggesting that the support they perceived from the first call was sufficient to meet their needs. In some interventions with a suggested minimum number of calls, up to one third of the women made less calls than that suggested (Farrelly et al 2015;Sutton and Erlen 2006). Participants appreciated the use of the telephone as the communication method, mainly because it is anonymous, which has been reported in previous studies (Leropoli et al 2011;Pistrang et al 2013;Rudy et al 2001).…”

“…Our results indicate that special attention should be paid to profile similarities when matching recipients and peers. Indeed, matching must be satisfying to both peers and recipients if the women are to share personal experiences, as underlined by previous studies conducted among women carrying a deleterious BRCA1/2 mutation (Farrelly et al 2015;Patenaude et al 2008).…”

“…Some peers would have appreciated the possibility of meeting other peers in order to share their experiences. A yearly event dedicated to acknowledging the contributions of peers could allow peers an opportunity to share their experiences (Farrelly et al 2015).…”

“…While various studies have examined the acceptability and effectiveness of peer support for cancer patients (Campbell et al 2004;Hoey et al 2008;Macvean et al 2008) only a few studies have focused on BRCA1/2 mutation carriers (Farrelly et al 2015;White et al 2014). Among the different forms of peer support, individual face to face and Web-based peer groups remain the best choices for improving psychosocial functioning (Hoey et al 2008).…”