Medical advocacy among African-American women diagnosed with breast cancer: from recipient to resource

Abstract

Purpose Medical advocacy at multiple levels (self, community/interpersonal, national/public health interest) may be helpful to address the disproportionate burden of breast cancer African American women encounter. Little however is known about the interplay of medical advocacy at different levels. Methods We analyzed qualitative data from two studies focused on the psychosocial experiences of breast cancer among 38 African American women living in Western Washington State. Results Emergent themes suggested that survivors received community/interpersonal advocacy from different members of social networks in the form of social support (appraisal, emotional, informational, instrumental). Survivors indicated that receiving this advocacy was associated with greater self advocacy in terms of their own care experiences as well as greater community/interpersonal advocacy on their part as resources to other women diagnosed with breast cancer, their family, friends, and larger communities. Conclusion Our findings suggest that community/interpersonal advocacy, including providing different types of support, may lead to improved self advocacy as well as health-protective impacts for the networks in which survivors are embedded. Future quantitative research is warranted to support these findings and assess how this interplay is associated with improved outcomes among this marginalized and resilient population.

“The disease is mine, the body is mine, I decide”: Individual, interpersonal, and institutional barriers and facilitators among survivors of women's cancers in Andean countries

“…Aligning with other researchers (Coughlin, 2008), we suggest that engagement in cancer support groups provides patients with crucial social support and psychological health benefits, including resilience. Local and national advocacy likely facilitates social support via fostering connections among survivors (Molina et al, 2016). Our documentation of these barriers and facilitators provides necessary data for multi-level policy change in this specific context.…”

“…We aimed to examine breast and cervical cancer survivors’ narratives to elucidate multi-level barriers faced during cancer care in Andean countries. Survivors are ideally positioned to provide information on the multi-level factors influencing the cancer care experience because they have: engaged in self-advocacy within their own care (Ashing et al, 2014); served as navigators and examples of success to newly diagnosed and unscreened populations (Coughlin, 2008); and may have experience serving as advocates within research, practice, and policy settings (Ashing et al, 2014; Errico & Rowden, 2006; Molina et al, 2016). With our findings, we invoke women’s experiences on the Andean cancer care continuum, in order to inform policy recommendations for clinics, hospitals, Plan Esperanza, and similar cancer plans.…”

Healthcare Predictors of Information Dissemination About Genetic Risks

“… 55 For example, previous research shows that the well-being of breast cancer survivors who identify as AA is tied to a sense of reciprocity in giving back to and sharing knowledge with their social networks; that different forms of social support often translate into personal, interpersonal, and community advocacy for others; and that information sharing with networks is linked to a sense of responsibility and collective experience. 35 , 55 , 56 Thus, increasing the capacity for, quality, and frequency of patient GCT experiences may not only lead to better outcomes – but together, may lead to broader community impact on knowledge about hereditary risk and GCT services. Our study is among the first to suggest that intervention strategies aimed at mitigating racial breast cancer mortality disparities should leverage patients’ medical lived experiences to broadcast knowledge about hereditary risk and GCT services throughout AA familial and friend networks.…”

“…Such dissemination aligns with past work that has suggested AA patients diagnosed with breast cancer can feel motivated to become agents of change and provide informational support to other AA women, especially if they feel supported during their own personal journeys. 34 , 35 In relation to GCT services, AA breast cancer patients with hereditary risks may be particularly effective in encouraging others to become aware of their risks for breast cancer (e.g., via risk assessments) and advocate for risk-optimized cancer care (e.g., eligibility for chemoprevention, age to initiate screening). Associations may be stronger for patients with confirmed pathogenic variants, for whom there may be particularly greater awareness of risk-based care (e.g., MRIs) and resources.…”

Cancer-Related Debt and Mental-Health-Related Quality of Life among Rural Cancer Survivors: Do Family/Friend Informal Caregiver Networks Moderate the Relationship?

“…We consider these factors in terms of family/friend informal caregivers. First, family/friend informal caregivers may not necessarily provide the cancer-specific support necessary to buffer cancer-related debt and other stressors (e.g., knowledge of financial assistance programs) when compared to health care providers and more peripheral network members (e.g., new peer survivor acquaintances; Arora et al 2007; Kroenke 2018; Molina 2018; Molina et al 2016). Second, family and friends provide cancer-related caregiving in the context of affectively close relationships, long-term relationships, and normative expectations of family responsibility for care (Jacobs et al 2016; Keating et al 2003; Litwin and Auslander 1990).…”