Breast cancer treatment decision making: an ethnographic exploration of how the cultural context of Ghana influences treatment decision making for women with breast cancer

Agyemang, Linda, Serwaa (2020) Breast cancer treatment decision making: an ethnographic exploration of how the cultural context of Ghana influences treatment decision making for women with breast cancer. University of Southampton, Doctoral Thesis, 272pp.

Record type: Thesis (Doctoral)

Abstract

Background: breast cancer in Ghana is characterised by a high mortality rate with 5-year survival approximated at 25%. This has mostly been attributed to advanced disease presentation. While advanced disease may be a salient factor contributing to the poor breast cancer survival in the country, it is increasingly being recognised that even when women present with early disease, some do not take up and or complete a recommended treatment. Many of these women return later with an advanced disease, which results in poor outcomes. The reasons for this have however, not been adequately explored and understood. The few studies conducted in this area identified pertinent cultural factors such as the disapproval of family members of women who take up surgical treatment (mastectomy), which means women often refuse surgery while other women choose traditional medicine (herbal and/or spiritual healing). Although cultural beliefs, values and practices seem fundamental in breast cancer treatment decision making, these studies were mostly quantitative, which are limited in allowing in-depth understanding. Moreover, studies were conducted on women who started treatment but had not completed the remaining courses of treatment. There was limited focus on women who are newly diagnosed and are
considering whether or not to start treatment, which limits understanding concerning this patient group. It is essential to understand these issues in this patient group to guide interventions aimed at supporting treatment decision making in women who are newly diagnosed with breast cancer.
This study aimed at exploring and understanding how the cultural context in Ghana influences treatment decision making for women with breast cancer attending a breast clinic in southern Ghana. Ethnographic approach was adopted. 89 hours of participant observation was conducted over a period of 16 weeks (July 2017 to November 2017), at a breast clinic, in a teaching hospital,
in southern Ghana. 31 participants (16 women diagnosed with curative breast cancer and yet to start treatment; five nominated relatives; five nurses and five doctors) were included in the study. 29 participants took part in in-depth interviews following participant observation. Fieldnotes andinterview transcripts were analysed thematically and iteratively in keeping with ethnographic data analysis approach.
The study found that quality information necessary for breast cancer treatment decision making is hidden from women. Factors that contribute to the hiddenness include unequal power relationships between patients and healthcare professionals (HCPs). Patients ascribed their passive and deferential behaviours to their cultural constructed role as laypersons who needed to submit to the experts. Doctors also deliberately miscommunicated treatment information with the intention of preventing patients from refusing treatment. This unequal power relationship, reinforced by a lack of patients’ involvement in treatment decision making and lack of privacy during consultation to facilitate quality patient engagement, contributed to the hidden information around the disease and treatment. Furthermore, a lack of local terms in the local Twi language to explain the concepts in cancer and treatment, a lack of information materials appropriate for the women who attend the clinic, in addition to a prevalence of stigmas and taboos around cancer all act to effectively deny access to or hide quality information from
women.

Patients fill in the gap left by the lack of information with lay explanations around the disease and treatment. Decision making amongst participants was influenced by factors such as a belief in a spiritual cause of breast cancer; beliefs that cancer is incurable, and that mastectomy actually contributes to death. There were concerns that treatment would disrupt women’s day-to-day
gender roles, such as housekeeping; breastfeeding; trading; taking care of children, and these influenced their treatment decision making. Awareness of survivors and the belief that treatment will lead to a cure or prevent disease progression influenced women to consider biomedicine. Other factors include faith in God; and the easy access of traditional medicine as opposed the high
financial cost (regardless of the National Health Insurance Scheme package) and hidden cost of biomedical treatment. While some of the factors (awareness of survivors; a belief that treat men twill lead to a cure or prevent disease progression and faith in God for bringing healing with biomedicine) pulled women towards biomedicine, majority of the factors pushed women away
from it..
This study has shown that breast cancer treatment decision making is underpinned by a complex interplay of structures, practices, beliefs and values which strongly influence women against biomedicine. These findings highlight the need for caregivers to be aware of the socio-cultural factors that limit access to quality information. Policymakers should also be aware that the cost of
cancer treatment continues to be a barrier despite NHIS package. Policies that aim at addressing this financial barrier and increasing staffing levels with adequate logistics and staff cultural awareness training are recommended.
The findings of this study make a significant contribution to the literature on how the cultural context in Ghana influences treatment decision making for women with breast cancer. This calls for a culturally appropriate treatment decision support intervention.