From Diagnosis to Survivorship: Using Cancer Support Group as an Advocacy and Support Tool for Cancer Care

Abstract

Purpose Cancer diagnosis comes with many challenges. Diagnosis is a huge burden to the patient, family, and community that subjects them to financial crisis, emotional distress, a dearth of self-esteem, and physiologic deformations. From a patient’s perspective, the treatment of cancer is complex and complicated with a weak health care system, attitude of health care workers, lack of insurance, lack of trust in orthodox medicine, and stigmatization. Patients with cancer are constantly seeking solace, people to listen to them, and people who understand their state of mind and can be a source of inspiration. Studies have shown that peer cancer support groups result in psychological benefit and improve relationships. The 2016 World Cancer Congress patient’s pavilion inspired us to start cancer support group for patients with cancers, survivors, and caregivers, known as the Abuja Breast Cancer Support Group, through the Union for International Cancer Control SPARC Metastatic Breast Cancer Challenge project. The cancer support group was primarily founded for only patients with breast cancer, survivors, caregivers, and for peer support. As of today the group has transitioned from being a patient group to also being an advocacy group with a number of activities and programs that are aimed at guiding all patients with cancer from diagnosis to survivorship. Methods This study reviewed the 1 year activities of the Abuja Breast Cancer Support Group and surveyed the impact of peer support on the 36 members of the group using a mixed-methods approach. Results Cancer support groups have the potential to revolutionize cancer care in sub-Saharan Africa, as we have seen with HIV/AIDs support groups. Use of technological tools is helpful to build connectedness. Conclusion There was an improvement in the psychological states of patients as well as in their physiologic understanding of their diagnosis by meeting together, networking, and interacting through a WhatsApp group. Our qualitative findings also indicate that patients with cancer need platforms through which to speak out, to advocate, and to change the course of cancer care if provided with the necessary training and support. AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jco/site/ifc . No COIs from the authors.