"We are champions": an investigation on how cancer support group propels patient advocacy, voices, education, mentorship, and support

“我们是冠军”:一项关于癌症互助小组如何推动患者权益倡导、发声、教育、指导和支持的调查

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Abstract

PURPOSE: With over 127,000 incidents and 79,000 deaths, cancer is now officially declared a notifiable disease of public interest in Nigeria. Most cancer control efforts have targeted prevention, diagnosis, and treatment, often overlooking supportive care, survivorship, and patient-centered aspects of care. This study investigated survivors' experiences with cancer support groups (CSG), exploring their activities, effectiveness, challenges, and benefits to address these critical gaps. METHODS: Participants (N = 14) who were cancer survivors and members of a CSG were recruited. Data collection was conducted through interviews, and the data were analyzed using both inductive and deductive thematic analysis. RESULTS: Five key themes were identified: "[coming] together, gives us a voice" (Patients' Voice); "[we] are dying from this cancer … who will speak out for us?" (Patient Advocacy); "I feel better [that] I have more understanding of the disease" (Patient Education); "I have a mentor and … I mentor" (Peer Mentor); and "support that we draw from each other" (Peer Support). The categories illustrated the facilitators, barriers, benefits, activities, and optimism in CSGs. The results showed that CSGs could propel patient advocacy, give a voice to survivors, provide education, mentorship, and supportive care to members. CONCLUSIONS: The findings highlight the role of CSGs in supportive care and survivorship. Establishing CSGs at cancer centers may promote patient advocacy and education and reduce abscondment. Nigeria's National Cancer Control Plan should prioritize and fund supportive care. Low- and middle-income countries should focus on engaging and collaborating with cancer patients to advance their cancer control efforts.

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