Anticipated help seeking behaviour and barriers to seeking care for possible breast and cervical cancer symptoms in Uganda and South Africa

Abstract Background: In South Africa, breast cancer is the most commonly diagnosed cancer and cervical cancer the leading cause of cancer mortality. Most cancers are diagnosed at a late-stage and following symptomatic presentation. The overall purpose of the study was to inform interventions aimed at improving timely diagnosis of breast and cervical cancer.Methods: In-depth interviews were conducted with women with potential breast or cervical cancer symptoms from urban and rural South Africa. Participants were recruited from a community-based cross-sectional study on breast and cervical cancer awareness. Data were analysed using a thematic analysis approach. Results: Eighteen women were interviewed (10 urban, 8 rural): the median age was 34.5 years (range 22-58). Most were unemployed, and five were HIV positive. Themes included impact and attribution of bodily changes; influence of social networks and health messaging in help-seeking; management of symptoms and help-seeking barriers. Breast changes were often attributed to manual activities or possible cancer. Women were often unsure how to interpret vaginal symptoms, attributing them to HIV, hormonal contraceptives, or partner infidelity. Concerns about cancer were based on health information from the radio, social networks, or from primary care providers. Prompt care seeking was triggered by impact of symptoms on personal lives. Rural women, especially with possible symptoms of cervical cancer, experienced challenges during help-seeking including judgmental attitudes of clinic staff. Most participants were skeptical of traditional medicine. Conclusions: This is the first study exploring interpretation of possible breast and cervical cancer symptoms at a community level in South Africa. The process of interpreting bodily changes, symptom attribution and help-seeking is complex and influenced by women’s everyday life experiences. Timely diagnosis interventions should not only include cancer symptom awareness but also address individual, structural and health systems related barriers to care.

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Women’s appraisal, interpretation and help-seeking for possible symptoms of breast and cervical cancer in South Africa: a qualitative study

BMC Women s Health ◽

10.1186/s12905-020-01120-4 ◽

2020 ◽

Vol 20 (1) ◽

Author(s):

Jane Harries ◽

Suzanne E. Scott ◽

Fiona M. Walter ◽

Amos D. Mwaka ◽

Jennifer Moodley

Keyword(s):

South Africa ◽

Cervical Cancer ◽

Social Networks ◽

Rural Women ◽

Help Seeking ◽

Primary Care Providers ◽

Hormonal Contraceptives ◽

Cancer Symptoms ◽

Timely Diagnosis ◽

Breast And Cervical Cancer

Abstract Background In South Africa, breast cancer is the most commonly diagnosed cancer and cervical cancer the leading cause of cancer mortality. Most cancers are diagnosed at a late-stage and following symptomatic presentation. The overall purpose of the study was to inform interventions aimed at improving timely diagnosis of breast and cervical cancer. Methods In-depth interviews were conducted with women with potential breast or cervical cancer symptoms from urban and rural South Africa. Participants were recruited from a community-based cross-sectional study on breast and cervical cancer awareness. Data were analysed using a thematic analysis approach. Results Eighteen women were interviewed (10 urban, 8 rural): the median age was 34.5 years (range 22–58). Most were unemployed, and five were HIV positive. Themes included impact and attribution of bodily changes; influence of social networks and health messaging in help-seeking; management of symptoms and help-seeking barriers. Breast changes were often attributed to manual activities or possible cancer. Women were often unsure how to interpret vaginal symptoms, attributing them to HIV, hormonal contraceptives, or partner infidelity. Concerns about cancer were based on health information from the radio, social networks, or from primary care providers. Prompt care seeking was triggered by impact of symptoms on personal lives. Rural women, especially with possible symptoms of cervical cancer, experienced challenges during help-seeking including judgmental attitudes of clinic staff. Most participants were skeptical of traditional medicine. Conclusions This is the first study exploring interpretation of possible breast and cervical cancer symptoms at a community level in South Africa. The process of interpreting bodily changes, symptom attribution and help-seeking is complex and influenced by women’s everyday life experiences. Timely diagnosis interventions should not only include cancer symptom awareness but also address individual, structural and health systems related barriers to care.

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Women's appraisal, interpretation and help-seeking for possible symptoms of breast and cervical cancer in South Africa: a qualitative study

10.21203/rs.3.rs-45456/v1 ◽

2020 ◽

Author(s):

Jane Harries ◽

Suzanne E Scott ◽

Fiona M Walter ◽

Amos D Mwaka ◽

Jennifer Moodley

Keyword(s):

South Africa ◽

Cervical Cancer ◽

Social Networks ◽

Qualitative Study ◽

Help Seeking ◽

Primary Care Providers ◽

Community Level ◽

Hormonal Contraceptives ◽

Cancer Symptoms ◽

Breast And Cervical Cancer

Abstract Background: In South Africa, breast cancer is the most commonly diagnosed cancer and cervical cancer the leading cause of cancer mortality. Most cancers are diagnosed at a late-stage and following symptomatic presentation. This qualitative study set out to explore appraisal, attribution and management of potential breast and cervical cancer symptoms at a community level among undiagnosed women. Methods: In-depth interviews were conducted with women with potential breast or cervical cancer symptoms from urban and rural South Africa. Participants were recruited from a community-based cross-sectional study on breast and cervical cancer awareness. Data were analysed using a thematic analysis approach. Results: Eighteen women were interviewed (10 urban, 8 rural): the median age was 34.5 years (range 22–58). Most were unemployed, and five were HIV positive. Themes included impact and attribution of bodily changes; influence of social networks and health messaging in help-seeking; management of symptoms and help-seeking barriers. Breast changes were often attributed to manual activities or possible cancer. Women were often unsure how to interpret vaginal symptoms, attributing them to HIV, hormonal contraceptives, or partner infidelity. Concerns about cancer were based on health information from the radio, social networks, or from primary care providers. Prompt care seeking was triggered by impact of symptoms on personal lives. Rural women, especially with possible symptoms of cervical cancer, experienced challenges during help-seeking including judgmental attitudes of clinic staff. Most participants were skeptical of traditional medicine. Conclusions: This is the first study exploring interpretation of possible breast and cervical cancer symptoms at a community level in South Africa. The process of interpreting bodily changes, symptom attribution and help-seeking is complex and influenced by women’s everyday life experiences. Timely diagnosis interventions should not only include cancer symptom awareness but also address individual, structural and health systems related barriers to care.

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Facilitators and barriers to help‐seeking for breast and cervical cancer symptoms: a qualitative study with an ethnically diverse sample in London

Psycho-Oncology ◽

10.1002/pon.3464 ◽

2013 ◽

Vol 23 (7) ◽

pp. 749-757 ◽

Cited By ~ 21

Author(s):

Laura A. V. Marlow ◽

Lesley M. McGregor ◽

James Y. Nazroo ◽

Jane Wardle

Keyword(s):

Cervical Cancer ◽

Qualitative Study ◽

Help Seeking ◽

Ethnically Diverse ◽

Cancer Symptoms ◽

Breast And Cervical Cancer ◽

Facilitators And Barriers

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Symptom appraisal, help-seeking and perceived barriers to healthcare seeking in Uganda: an exploratory study among women with potential symptoms of breast and cervical cancer

BMJ Open ◽

10.1136/bmjopen-2020-041365 ◽

2021 ◽

Vol 11 (2) ◽

pp. e041365

Author(s):

Amos Deogratius Mwaka ◽

Fiona M Walter ◽

Suzanne Scott ◽

Jane Harries ◽

Henry Wabinga ◽

...

Keyword(s):

Cervical Cancer ◽

Help Seeking ◽

Perceived Barriers ◽

African Women ◽

Health Seeking ◽

Cross Sectional Survey ◽

Cross Sectional ◽

Cancer Symptoms ◽

Breast And Cervical Cancer ◽

Symptom Appraisal

ObjectiveWe assessed the process of recognising abnormal bodily changes, interpretations and attributions, and help-seeking behaviour among community-based Ugandan women with possible symptoms of breast and cervical cancer, in order to inform health interventions aiming to promote timely detection and diagnosis of cancer.DesignQualitative in-depth interviews.SettingRural and urban communities in Uganda.ParticipantsWomen who participated in the African Women Awareness of CANcer cross-sectional survey who disclosed potential breast and cervical cancer symptoms were eligible; recruitment was purposive. Interviews were conducted in women’s homes, lasted between 40 and 90 min, were audio-recorded, transcribed verbatim and translated to English. Thematic analysis was used to identify themes and subthemes, underpinned by the conceptual framework of the Model of Pathways to Treatment.Results23 women were interviewed: 10 had potential symptoms of breast cancer and 13 of cervical cancer. Themes regarding symptom appraisal and help-seeking included the: (1) detection and interpretation of abnormal bodily sensations; (2) lay consultations regarding bodily changes; (3) iterative process of inferring and attributing illnesses to the bodily changes; (4) restricted disclosure of symptoms to lay people due to concerns about privacy and fear of stigmatisation; (5) help-seeking from multiple sources including both traditional and biomedical health practitioners, and (6) multiple perceived barriers to help-seeking including long waiting times, lack of medicines, absenteeism of healthcare professionals, and lack of money for transport and medical bills.ConclusionWomen with potential symptoms of breast and cervical cancer undergo complex processes of symptom interpretation, attributing symptoms or inferring illness, and lay consultations before undertaking help-seeking and management. Increasing community understanding of breast and cervical cancer symptoms, and tackling perceived barriers to health-seeking, could lead to prompt and appropriate symptom appraisal and help-seeking, and contribute to improving cancer outcomes.

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Psychosocial influences on help-seeking behaviour for cancer in low-income and lower middle-income countries: a mixed-methods systematic review

BMJ Global Health ◽

10.1136/bmjgh-2020-004213 ◽

2021 ◽

Vol 6 (2) ◽

pp. e004213

Author(s):

Grace McCutchan ◽

Bahr Weiss ◽

Harriet Quinn-Scoggins ◽

Anh Dao ◽

Tom Downs ◽

...

Keyword(s):

Systematic Review ◽

Mixed Methods ◽

Cancer Treatment ◽

Help Seeking ◽

Middle Income ◽

Cancer Symptoms ◽

Middle Income Countries ◽

Help Seeking Behaviour ◽

Psychosocial Influences

IntroductionStarting cancer treatment early can improve outcomes. Psychosocial factors influencing patients’ medical help-seeking decisions may be particularly important in low and lower middle-income countries (LMIC) where cancer outcomes are poor. Comprehensive review evidence is needed to understand the psychosocial influences on medical help-seeking for cancer symptoms, attendance for diagnosis and starting cancer treatment.MethodsMixed-methods systematic review registered on PROSPERO (CRD42018099057). Peer-reviewed databases were searched until April 2020 for studies assessing patient-related barriers and facilitators to medical help-seeking for cancer symptoms, diagnosis and treatment in adults (18+ years) living in LMICs. Quality of included studies was assessed using the Critical Appraisal Skills Programme tool. Data were synthesised using meta-analytic techniques, meta-ethnography or narrative synthesis as appropriate.ResultsOf 3963 studies identified, 64 were included. In quantitative studies, use of traditional, complementary and alternative medicine (TCAM) was associated with 3.60 higher odds of prolonged medical help-seeking (95% CI 2.06 to 5.14). Qualitative studies suggested that use of TCAM was a key barrier to medical help-seeking in LMICs, and was influenced by causal beliefs, cultural norms and a preference to avoid biomedical treatment. Women face particular barriers, such as needing family permission for help-seeking, and higher stigma for cancer treatment. Additional psychosocial barriers included: shame and stigma associated with cancer such as fear of social rejection (eg, divorce/disownment); limited knowledge of cancer and associated symptoms; and financial and access barriers associated with travel and appointments.ConclusionDue to variable quality of studies, future evaluations would benefit from using validated measures and robust study designs. The use of TCAM and gender influences appear to be important barriers to help-seeking in LMIC. Cancer awareness campaigns developed with LMIC communities need to address cultural influences on medical help-seeking behaviour.

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Towards timely diagnosis of symptomatic breast and cervical cancer in South Africa

South African Medical Journal ◽

10.7196/samj.2018.v108i10.13478 ◽

2018 ◽

Vol 108 (10) ◽

pp. 803 ◽

Cited By ~ 3

Author(s):

J Moodley ◽

F M Walter ◽

S E Scott ◽

A M Mwaka

Keyword(s):

South Africa ◽

Cervical Cancer ◽

Timely Diagnosis ◽

Breast And Cervical Cancer ◽

Symptomatic Breast

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Knowledge and Screening Practices of Breast and Cervical Cancer in Rural and Urban South Africa

Journal of Global Oncology ◽

10.1200/jgo.18.38000 ◽

2018 ◽

Vol 4 (Supplement 2) ◽

pp. 46s-46s

Author(s):

A. LaVigne ◽

S. Grover ◽

S. Rayne

Keyword(s):

Risk Factors ◽

South Africa ◽

Cervical Cancer ◽

South African ◽

Rural Women ◽

Tertiary Care ◽

African Women ◽

Screening Methods ◽

Breast And Cervical Cancer ◽

South African Women

Background: The South African government has recently released cancer policies for breast and cervical cancer—the most common types and causes of cancer-related death in South African women. Increased mortality rates and advanced disease at presentation in comparison with developed countries suggests a need for greater awareness of risk factors, screening and preventative methods individualized for the population at risk. Aim: To characterize and compare the knowledge base and perceptions of women in urban and rural settings, we assessed these factors in two different cohorts in South Africa. Methods: A cross-sectional sample was taken in South Africa of women invited to participate in a survey regarding breast and cervical cancer knowledge, and awareness of risk factors, prevention and screening. Participants were approached in shopping malls and health facilities in urban Johannesburg in 2015 (“urban”) and semirural Bushbuckridge, 450 km northeast of Johannesburg (“rural”) in 2016. Results: 600 total women were surveyed, with 300 from each cohort. 83% of the urban cohort completed matriculation or higher, versus 60% of rural participants for whom high school was their highest level of education. Both groups demonstrated comparable levels of cancer awareness, and > 70% felt that cervical cancer is preventable. While the urban cohort was more knowledgeable about Pap smears (76% vs. 66%, P = 0.004), > 75% of both cohorts were willing to get one. Although both groups were largely unfamiliar with the role of HPV in cervical cancer, rural women were more aware of HIV (38% vs. 59%, P < 0.0001), smoking (43% vs. 62%, P < 0.0001) and parity (39% vs. 54%, P = 0.00019) as risk factors. Nevertheless, urban participants were more knowledgeable about breast self exams (71% vs. 59%, P = 0.001) and mammograms (62% vs. 42%, P < 0.0001), and more likely to undergo one (79% vs. 66%, P = 0.0002). Both groups identified family history and genetics as risk factors, but rural women appeared more aware of the roles of diet (30.67% vs. 39.93%, P = .011), oral contraceptives (17.33% vs. 34.77%, P < .0001), alcohol (26.67% vs. 52.15%, P < .0001) and lack of exercise (8.67% vs. 55.12%, P < .0001). Conclusion: Overall knowledge of breast and cervical cancer did not differ between both groups, despite varying levels of education and geographic setting. Women in the rural cohort demonstrated more awareness of several oncologic risk factors. Yet, the greater familiarity with and uptake of screening methods, especially for breast cancer, among women in the urban cohort may point to the benefits of proximity to health care infrastructure, such as tertiary care centers. This data supports a need for further implementation and distribution of cancer care services within cancer policies, to capitalize on increasingly sufficient levels of awareness among South African women.

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Presentation of breast cancer, help seeking behaviour and experience of patients in their cancer journey in Singapore: a qualitative study

BMC Cancer ◽

10.1186/s12885-020-07585-8 ◽

2020 ◽

Vol 20 (1) ◽

Author(s):

Celene W. Q. Ng ◽

Jennifer N. W. Lim ◽

Jenny Liu ◽

Mikael Hartman

Keyword(s):

Breast Cancer ◽

Help Seeking ◽

Financial Burden ◽

Support Network ◽

Medical Attention ◽

Time Interval ◽

Delayed Presentation ◽

Cancer Symptoms ◽

Qualitative Interview Study ◽

Help Seeking Behaviour

Abstract Background Little is known about the presentation, help seeking behaviour for breast cancer in Singapore. Nor was there a study exploring the experience of patients in their breast cancer journey. Methods A qualitative interview study with thematic analysis, conducted with 36 patients. Results There is no clear pattern of presentation for breast cancer by cancer stage at diagnosis, age and ethnicity in the cancer journey of this group of patients. Patients were diagnosed with early to advanced stages cancer regardless of when they presented or took up treatment in their cancer journey. The reasons patients sought medical attention also did not appear to differ between the stages of cancer diagnosed, ethnic and age. Without setting a measure to define early and late presentation, we found that women shared similar experience in their breast cancer journey, regardless of age, ethnicity and stage of cancer at diagnosis. Poor knowledge of breast cancer (symptoms and causes); few practised regular BSE; denial of symptom; fear of hospitalisation, diagnosis and treatment; worries and stress over financial burden of treatment; misinformation in magazine and online sources; diet; stress; caring responsibility; support network; and use of alternative medicine before and after diagnosis were identified in patients’ narratives. Strong social support; fear of being an emotional and financial burden for the family; and financial worries during treatment were also the recurring themes after diagnosis. Conclusion A measure of breast cancer presentation - that accounts for the patient’s experience in the cancer journey, the time interval and tumour biology – that is meaningful to patients, clinicians and researchers is needed. For research on late and delayed presentation, details on BSE practice – how often, when and was it done correctly – will improve the accuracy of time delay interval. For the public, concerted efforts to improve knowledge of breast cancer, survival and prognosis for early-diagnosed cancer, and the importance of regular and correct technique to perform BSE, are critical and urgent to address the rising breast cancer incidence in the country.

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