Jenna
Yeam
Inflammatory breast cancer (IBC), a rare and NIH-designated cancer health disparity, is an aggressive subtype with a unique presentation that often delays diagnosis and treatment. Reproductive risk factors, higher incidence rates among marginalized populations, and social drivers of health (SDoH) limit healthcare access, making IBC an important focus for mitigating health disparities. Previous research with primary care providers (PCPs) and IBC patients underscored the need to assess IBC awareness among members of the general public, leading to the focus on evaluating the public's knowledge and health-seeking behaviors related to IBC and other rare breast cancers. Surveys for PCPs, patients, and the public were developed with guidance from a Community Advisory Board and refined through cognitive interviews. PCPs and IBC patients were identified from North Carolina medical centers and community practices. Public participants were recruited via email, social media, and direct outreach at urban and rural clinics serving low-income, medically complex patients, as well as diverse community events. Data were analyzed using descriptive statistics and t-tests (p<0.05). Among public participants (n=170; 77% Female, 55% White, 21% Black, 12% Asian, 9% Hispanic, 7% American Indian/Alaskan Native, 4% Pacific Islander, 61% ages 25-44, 43% with household incomes <$99,000, 41% based in North Carolina), 20% had never heard of IBC (p<0.0001). Misconceptions included: 70% incorrectly identifying breast lumps as a symptom (p<0.0001); 40% not recognizing overweight status as a risk factor (p=0.009); 36% not identifying the characteristic "pitted" skin appearance (p=0.0003); and 35% not recognizing changes in breast size/shape as a symptom (p=0.0001). Healthcare-seeking barriers included fear of diagnosis, difficulty discussing symptoms, lack of insurance, transportation, and religious concerns. Encouragingly, 97% of participants were willing to share IBC information, particularly with family and friends (p <0.0001). Most supported integrating visual aids and educational materials into survey administration. Findings highlight the need for public education alongside provider- and patient-focused research to reduce the health disparities associated with rare cancers. Addressing modifiable SDoH in diverse communities is critical to improving early detection and management of IBC and other rare cancers in primary care. Challenges to Dying Well and Death Doula Work
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Authors:
Jenna Yeam
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With increasing life expectancy, the decline of multi-generational households, and the over- medicalization of death and dying, individuals in their end of life, and their loved ones, experience unnecessary suffering from points of friction that arise in an end-of-life journey. In response, end-of-life professionals called Death Doulas are emerging to fill critical gaps in care. Death Doulas are non-medical caretakers who address the psychological, emotional, existential, and practical needs of the dying and their loved ones. The study aims to identify what is going wrong at the end of life by identifying points of friction and intra-friction relationships. The study draws on Death Doula's experiences to provide a non-medical perspective from a non-medical figure that is not personally related to the dying person nor the circle of care to explain what is going wrong, including frictions' causes, consequences, and character. I completed 67 semi-structured interviews with INELDA-certified US Death Doulas. Following interview transcription and data cleaning, I conducted an inductive codebook thematic analysis. The findings highlight points of friction, using the actions and inactions of the dying person and their circle of care as the entry point. Key themes include the failure to identify dying person's wishes, unquestioned adherence to medical advice, underutilization of palliative care services, lack of awareness and misconceptions about palliative care options, exclusion of loved ones in EOL decision-making, inadequate discussions about EOL preferences, prioritizing family desires over the dying person's wishes, avoidance of open discussions about death, and a lack of communication regarding EOL and post-death care wishes.In the process, the theme of death and dying awareness and education consistently emerged as an underlying cause of frictions, which highlights a need for greater death education, awareness, and death positive activism. Further research is necessary to evaluate the potential role medical and non- medical professionals may play to establish a sense of patient and family control, enhance informed-decision making, and expand the care model to incorporate greater emotional and spiritual support. In addition, community-engaged approaches to death education may be used to improve local EOL experiences.
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Duke University / 2025
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Co-authors:
Jenna Yeam