Examining social media peer support and improving psychosocial outcomes for young women with breast cancer.

Abstract

162 Background: Young women with breast cancer (YWBC) have unique survivorship needs due to life stage at point of diagnosis. Peer support sought by YWBC through social media channels appears to be rising. We aimed to understand the unmet needs of YWBC in order to develop a tailored peer support program to improve young women’s breast cancer experience and ultimately reduce psychosocial morbidity long-term. Methods: Using qualitative inquiry, we conducted semi-structured interviews with YWBC survivors and clinicians using purposive sampling. Inclusion criteria were women aged 40 years or younger at diagnosis, stage 0-IV disease. Survivors were minimum one year post-diagnosis and with active treatment complete. Interviews were recorded and transcribed verbatim and data was analyzed using Thorne’s Interpretive Description. Themes were reviewed with study team throughout data analysis. Results: Thirty-six participants were interviewed from ten centers across seven Canadian provinces; mean age 36 years. Participant reported demographics:18% ‘visible minority’, 9% ‘born outside Canada’, 7% ‘Indigenous’ and 54% of patients’ household income at or below Canadian average. At point of diagnosis 69% married, 44% had children and 9% pregnant or postpartum. Themes from YWBC interviewed focused on coping needs: feeling alone, misunderstood by professionals and misplaced among peers. Participants described all-age peer support groups risked triggering anxieties, lacked convenience and were comprised of women at later life stages with differing needs. YWBC reported lack of young age breast cancer-specific peer support. YWBC frequently found support through social media de novo, by following young-age breast cancer survivor pages, blogs and forums as well as virtual support groups. YWBC also report benefit from identifying similar life and cancer stage survivors globally and forming individual relations virtually, through direct messaging. Additionally, benefits described from age-specific social media support included unique shared experience and understanding, hope from positive outcomes of similar life stage diagnoses, and increased confidence and healthcare navigation for YWBC. Women unanimously requested one on one peer support program development - a survivor mentorship scheme specifically for YWBC that would provide the convenience of online support without the obligations or emotionally overwhelming nature of structured support groups. Conclusions: We have identified unique support needs from this young cohort of women that are not currently being met within standard Canadian healthcare pathways. We aim to develop a novel one on one peer support program for YWBC, to optimize psychosocial support and improve young women’s empowerment and autonomy in managing the effects of cancer long-term.

A hermeneutic phenomenological study on the disease experience among young women with breast cancer

“…The participants did not receive sufficient empathy from family and friends who had not experienced the disease and felt marginalized even among other patients with breast cancer because of their young age. This finding is consistent with young women with breast cancer experiencing discomfort amid mixed-age groups, 43 contrary to general beliefs that self-help groups composed of patients with the same disease provide psychosocial support. 44 To address these challenges and fulfill their psychosocial needs, the participants engaged in online chats to communicate, empathize, and encourage peers in their age group.…”

Experiences of peer support activities and the need for a metaverse-based program in young women with breast cancer: A qualitative study

“… 6 , 9 However, general peer support groups, predominantly comprising women at later life stages, fail to address the distinct needs of young women with breast cancer. 10 These young women exhibit heightened risk perceptions of cancer recurrence, 11 higher levels of depression and anxiety, 12 and experience unique psychosocial demands related to work, finance, fertility, and family and social relationships. 12 , 13 Therefore, peer support specific to the unique needs of young women with breast cancer should be offered.…”

#COVID19 and #Breastcancer: A Qualitative Analysis of Tweets

“…However, Smailhodzic et al [ 26 ] found high engagement with posts in this category, often generating empathetic responses from other users. Though these types of interactions often had low generativity (i.e., did not often generate new ideas), social media support can provide users with shared experience, understanding, hope, and increased confidence and healthcare navigation in this way [ 28 ].…”