Culture, community, and cancer: understandings of breast cancer from a non-lived experience among women living in Soweto
Abstract Background Individual perceptions, socio-cultural beliefs and health system factors are key determinants of people’s health seeking behavior and are widely cited as the causes of delayed breast cancer diagnosis among women from structurally vulnerable settings. Asking: “how do women with a...
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| Language: | English |
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BMC
2024-11-01
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| Series: | BMC Women's Health |
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| Online Access: | https://doi.org/10.1186/s12905-024-03431-2 |
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| author | Seemela D. Malope Shane A. Norris Maureen Joffe |
| author_facet | Seemela D. Malope Shane A. Norris Maureen Joffe |
| author_sort | Seemela D. Malope |
| collection | DOAJ |
| description | Abstract Background Individual perceptions, socio-cultural beliefs and health system factors are key determinants of people’s health seeking behavior and are widely cited as the causes of delayed breast cancer diagnosis among women from structurally vulnerable settings. Asking: “how do women with a non-lived experience of cancer understand the disease and, what informs their health seeking behaviors?”, we qualitatively explored, individual, sociocultural and health system elements from a conceptual model derived from the Socioecological, Health Belief and Cancer Stigma Frameworks, to understand perspectives of breast cancer in a South African urban community setting. Methods Using a deductive approach and allowing new themes to emerge inductively, we investigated phenomenologically, breast cancer perceptions among 34 women from Soweto, Johannesburg (aged 35–74 years) in 6 Focus Group Discussions. We then conducted 20 follow-up semi-structured in-depth interviews to explore novel themes and suggestions for increasing breast cancer screening. Results Findings revealed some awareness of breast and other cancers, but confusion and gaps in understanding of the disease, resulting in socio-culturally influenced misperceptions of risks, causes, and outcomes following treatment of breast cancer. This fueled perceptions of profound fear and stigma against people with breast and other cancers. These findings together with participant perceptions of primary healthcare providers being unwelcoming, under-resourced, and insufficiently trained to deal with breast cancer, resulted in women reporting being reluctant to participating in screening/early detection care seeking behavior. Women only accessed primary care when experiencing extreme pain or ill-health. Participants suggested as solutions for future interventions, the need for sustained community engagement, harnessing existing clinic and community stakeholders and resources to provide clear and understandable breast cancer information and encouragement for screening uptake. Conclusions Health literacy gaps surrounding breast cancer fuels socio-culturally influenced misperceptions, fear, stigma, and fatalism among women from Soweto. Women perceive primary care providers of having insufficient knowledge, skills, and resources to provide effective breast cancer screening services. Participants suggested the need for greater community engagement involving primary clinics and existing community stakeholders working collaboratively. Clear, understandable, and consistent information about breast cancer must be regularly disseminated and communities must be regularly encouraged to utilize breast cancer screening services. |
| format | Article |
| id | doaj-art-3a3f05e452f649aba058609d79f7e204 |
| institution | OA Journals |
| issn | 1472-6874 |
| language | English |
| publishDate | 2024-11-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Women's Health |
| spelling | doaj-art-3a3f05e452f649aba058609d79f7e2042025-08-20T02:13:32ZengBMCBMC Women's Health1472-68742024-11-0124112210.1186/s12905-024-03431-2Culture, community, and cancer: understandings of breast cancer from a non-lived experience among women living in SowetoSeemela D. Malope0Shane A. Norris1Maureen Joffe2Strengthening Oncology Services Research Unit, Faculty of Health Sciences, University of the WitwatersrandSAMRC/Wits Developmental Pathways for Health Research Unit, Faculty of Health Sciences, University of the WitwatersrandStrengthening Oncology Services Research Unit, Faculty of Health Sciences, University of the WitwatersrandAbstract Background Individual perceptions, socio-cultural beliefs and health system factors are key determinants of people’s health seeking behavior and are widely cited as the causes of delayed breast cancer diagnosis among women from structurally vulnerable settings. Asking: “how do women with a non-lived experience of cancer understand the disease and, what informs their health seeking behaviors?”, we qualitatively explored, individual, sociocultural and health system elements from a conceptual model derived from the Socioecological, Health Belief and Cancer Stigma Frameworks, to understand perspectives of breast cancer in a South African urban community setting. Methods Using a deductive approach and allowing new themes to emerge inductively, we investigated phenomenologically, breast cancer perceptions among 34 women from Soweto, Johannesburg (aged 35–74 years) in 6 Focus Group Discussions. We then conducted 20 follow-up semi-structured in-depth interviews to explore novel themes and suggestions for increasing breast cancer screening. Results Findings revealed some awareness of breast and other cancers, but confusion and gaps in understanding of the disease, resulting in socio-culturally influenced misperceptions of risks, causes, and outcomes following treatment of breast cancer. This fueled perceptions of profound fear and stigma against people with breast and other cancers. These findings together with participant perceptions of primary healthcare providers being unwelcoming, under-resourced, and insufficiently trained to deal with breast cancer, resulted in women reporting being reluctant to participating in screening/early detection care seeking behavior. Women only accessed primary care when experiencing extreme pain or ill-health. Participants suggested as solutions for future interventions, the need for sustained community engagement, harnessing existing clinic and community stakeholders and resources to provide clear and understandable breast cancer information and encouragement for screening uptake. Conclusions Health literacy gaps surrounding breast cancer fuels socio-culturally influenced misperceptions, fear, stigma, and fatalism among women from Soweto. Women perceive primary care providers of having insufficient knowledge, skills, and resources to provide effective breast cancer screening services. Participants suggested the need for greater community engagement involving primary clinics and existing community stakeholders working collaboratively. Clear, understandable, and consistent information about breast cancer must be regularly disseminated and communities must be regularly encouraged to utilize breast cancer screening services.https://doi.org/10.1186/s12905-024-03431-2Breast cancerCommunity perceptionsSociocultural influencesHealth systemsEarly detectionSouth Africa |
| spellingShingle | Seemela D. Malope Shane A. Norris Maureen Joffe Culture, community, and cancer: understandings of breast cancer from a non-lived experience among women living in Soweto BMC Women's Health Breast cancer Community perceptions Sociocultural influences Health systems Early detection South Africa |
| title | Culture, community, and cancer: understandings of breast cancer from a non-lived experience among women living in Soweto |
| title_full | Culture, community, and cancer: understandings of breast cancer from a non-lived experience among women living in Soweto |
| title_fullStr | Culture, community, and cancer: understandings of breast cancer from a non-lived experience among women living in Soweto |
| title_full_unstemmed | Culture, community, and cancer: understandings of breast cancer from a non-lived experience among women living in Soweto |
| title_short | Culture, community, and cancer: understandings of breast cancer from a non-lived experience among women living in Soweto |
| title_sort | culture community and cancer understandings of breast cancer from a non lived experience among women living in soweto |
| topic | Breast cancer Community perceptions Sociocultural influences Health systems Early detection South Africa |
| url | https://doi.org/10.1186/s12905-024-03431-2 |
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