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In Their Own Words: A Qualitative Study of Kenyan Breast Cancer Survivors' Knowledge, Experiences, and Attitudes
Siwon Lee1, Amal Gedleh1, Jessica A Hill1
1Siwon Lee, Amal Gedleh, Seemi Qaiser, Yvonne Umukunda, and Helen Dimaras, University of Toronto; Jessica A. Hill and Helen Dimaras, The Hospital for Sick Children; Helen Dimaras, SickKids Research Institute, Toronto, Ontario, Canada; Grace Kitonyi, and Helen Dimaras, University of Nairobi; and Philip Odiyo, Faraja Cancer Support Trust, Nairobi, Kenya.
Introduction:
Breast cancer ranks among the most common adult cancers in Kenya. Individuals with a family history of the disease are at increased risk. Mutations most commonly associated with breast cancer affect BRCA1 and BRCA2; mutations in several other genes may also confer breast cancer risk. Genetic testing and counseling can help patients understand their risk and assist clinicians in choosing therapies. We aimed to uncover what patients know, experience, and think with regard to breast cancer genetics in Kenya.
Methods:
Participants included breast cancer survivors age > 18 years. Participants completed a demographic questionnaire before participating in focus group discussions to uncover knowledge of, experiences with, and attitudes toward the genetics of breast cancer. Data were analyzed by inductive thematic analysis.
Results:
Four focus groups were conducted. Participants had rudimentary knowledge about genetics and cancer development, and although they understood breast cancer could be familial, many suspected environmental factors causing spontaneous disease. They reported limited experience with counseling about genetic risk, perceiving that their physicians were too busy to provide comprehensive information. Many indicated they promoted cancer screening among family to promote early diagnosis. Participants expressed a need for more comprehensive counseling and access to genetic testing, recognizing the added clarity it would bring to their families' risk of cancer.
Conclusion:
Improved communication from health care teams could clarify the risk of cancer for affected families. The introduction of affordable genetic testing and counseling for breast cancer in Kenya is welcomed by survivors.