Socioeconomic impact of breast cancer on young women in Ghana: A qualitative study

Abstract Aim This study was undertaken to discover the socioeconomic impact of breast cancer on young women in Ghana. Methods A qualitative exploratory and descriptive design was used to recruit 12 young women from the University of Ghana hospital, 37 Military hospital and Ridge hospital. Individual interviews were conducted face to face and data transcribed verbatim and analysed using content analysis. Results Three themes emerged: perceptions and beliefs; economic concerns; and secrecy. Participants perceived that breast cancer was a test of faith, a spiritual disease that is contagious and disgraceful. Mostly, participants stopped work to cater for themselves, and as a result, they encountered financial challenges. Their challenges were compounded with conscious efforts to keep diagnosis secret to avoid being stigmatized. Conclusion Young women living with breast cancer need support physically, economically and socially from healthcare providers, their families and the society at large.

These women even refuse to disclose their diagnoses to families and friends because of perceived stigma and the behaviour of society towards breast cancer patients (Mehrabi, Hajian, Simbar, Hoshyari, & Zayeri, 2016). There are patients who also selectively disclose to people who they think are trustworthy (Smith, Dawson-Rose, Blanchard, Kools, & Butler, 2016). However, some do not disclose to families because they do not want them to get worried, overprotect them or have pity for them (Thornton et al., 2014). On the contrary, others have no problem disclosing their diagnosis because, to them, having breast cancer, is not a criminal offense (Mehrabi et al., 2016). In some cultures, when someone gets breast cancer, it means the person is bewitched or cursed and people shun the sufferer's company for fear of incurring the wrath of their ancestors (Muliira, Salas, & O'Brien, 2017). Asobayire and Barley (2015) indicated that cultural beliefs, stigma and perceptions attached to breast cancer in northern Ghana limit women from openly seeking health care. Similarly, Jiwa, Ofori-Atta, and Goh (2015) reported that breast cancer is perceived a taboo in some cultures in Ghana, and therefore, people who detect abnormalities in their breasts keep their symptoms for months before reporting to health facilities or first seek for healing in churches (Iddrisu, Aziato, & Dedey, 2019). Stigma is also reported by Licqurish et al. (2017), women affected with breast cancer refuse to mention it so that they keep the respect of their families. Additionally, some societies regard breast cancer as a taboo and ladies whose mothers suffer breast cancer find it difficult getting husbands in their local communities (Taha et al., 2012).
Ignorantly, some cultures see breast cancer as a communicable disease, and therefore, sufferers are shunned; their clothing, bowls, cups and spoons separated from that of the larger family as a preventive measure (Inan, Gunusen, & Ustun, 2016;Licqurish et al., 2017).
Apart from the beliefs associated with breast cancer, financial constraints and long distances to health facilities have been identified as challenges to treatment and factors that cause patients to report late to health facilities (Kohler et al., 2017). Ekwueme and Trogdon (2016) posit that expensive breast cancer diagnostic investigations recommended during treatment leave patients with untoward economic hardship. Further evidence revealed that treatment puts a burden on both the patients and their families and hinder their quality of life (Grosse Frie et al., 2018). The economic burden of breast cancer in young women is higher because these women become less productive due to negative treatment effects which results in work absenteeism, have reduced work hours and pay higher bills to get medical attention and counselling (Ekwueme & Trogdon, 2016;Pisu, Azuero, Benz, McNees, & Meneses, 2017). There are cancer patients who stop working to take care of themselves while others change jobs to lesser demanding ones to minimize stress on themselves (Swanberg, Nichols, Ko, Tracy, & Vanderpool, 2017). According to Cardoso, Harbeck, Mertz, and Fenec, (2016), women look for less stressful jobs that pay less resulting in a decline in income. The financial burden associated with breast cancer care has been cited as some of the reasons why some cancer patients abandon treatment (Sanuade et al., 2018).
Generally, most women in Ghana work in the informal sector.
The typical Ghanaian woman is considered as a homemaker who is basically supposed to care for children, do household chores and engage in some menial jobs to keep the home. The few minority women who find themselves in the corporate world averagely earn lower income. Consequently, young women in Ghana mostly lack the financial independence necessary to make treatment decisions when afflicted with a condition like breast cancer, and breast cancer treatment is not covered by the national health insurance scheme.
The aim of this study was to explore the socioeconomic impact of breast cancer treatment and care on young women in Ghana. The findings will inform policy change to address unique socioeconomic challenges of young women undergoing treatment for breast cancer.

| Research design
An exploratory descriptive approach to qualitative research was used to explore and understand young women's socioeconomic experiences with breast cancer. Not much has been done on the topic, hence a qualitative exploratory and descriptive design were considered appropriate (Polit & Beck, 2013).

| Participants and setting
We conducted the study in three different hospitals and interviewed young women between the ages of 15-49 years, diagnosed with breast cancer, and living in the Accra Metropolis. Inclusion Criteria were haven been diagnosed with breast cancer, undergone some form of treatment and could speak English and Twi. For exclusion criteria, newly diagnosed patients and acutely sick patients on admission were not recruited. Twelve participants were recruited using purposive and snowball sampling techniques. Initially, participants were carefully selected to meet the study's inclusion criteria; later, the snowball technique was used to recruit other participants. The secrecy behaviours associated with communicating ones' diagnosis necessitate the snowball technique for recruiting some of the participants.

| Data collection method
Qualitative individual interviews were conducted with twelve research participants. A formal permission was sought from the three facilities where data were collected. Young women with breast cancer who fell within the inclusion criteria and received treatment at these health facilities were sampled. Potential participants were recruited and given information sheets which was well explained in simple language. By means of phone calls, the researchers had individual agreements with participants to arrange for interview sessions. A semi-structured interview guide was designed to collect data that assisted the researchers to keep track of the research focus. Interviews were conducted face to face with each participant and audiotaped with participants' permission. Participants' responses where probed to allow them share freely their views on the phenomenon. The participants were interviewed at their convenience in English. Each interview took about 35-60 min and was recorded with participants' consent. Saturation was achieved by the tenth participants when no new information relevant to the study was obtained. Additional two interviews were done to validate data saturation.

| Data analysis
Data were analysed using thematic analysis, and Miles and Huberman (1994) approach to data analysis was adopted. Data analysis was done alongside data collection. Data collected were first transcribed verbatim; then, all the researchers read through the data several times to have meaning to what participants narrated. The researchers examined the data for ideas, thoughts, and words that were similar and interesting, and coded them. Similar codes were grouped as subthemes and very related subthemes clustered to form themes.

| FINDING S
A total of twelve young women diagnosed with breast cancer, receiving treatment and care were involved in this study. Table 1 presents the sociodemographic characteristics of the participants who were between the ages of 32-45 years. The table outlines the ethnic background, occupation, marital status and level of educational attainment of the participants. The time of diagnosis expressed in months, types of current treatment and whether or not the participants was registered with health insurance were also presented. Three major themes, eight subthemes and sample codes are presented Table 2.

| Perceptions and beliefs
This theme explains the participants' reported perceptions and beliefs about breast cancer. These perceptions and beliefs affected some participants' acceptance to comply with medical orders.
Others believed that breast cancer was a test of their faith, and few believed that breast cancer was contagious. Two subthemes emerged: perception of participants on breast cancer and perception of family and friends on breast cancer.

| Perception of participants on breast cancer
Many participants had strong religious beliefs about the causes of cancer and cancer treatments. Consequently, it was revealed that some TA B L E 1 Participants' sociodemographic characteristics

Identity (woman)
Age ( If it is not spiritual then why is that it was never detected from all the investigations I did and now confirmed when I cannot walk. Others too might be interested in your job position and once you are no more, they can occupy it like I am at home now.
Some also believed that the breast of every woman is precious and that breast cancer is disgraceful, deadly and dangerous.
…all that I know is that we the women our breast is our heart and once they temper with the breast you will not live long. In the beginning, I refused the surgery.
Some participants perceived that breast cancer is; "deadly, disgraceful, dangerous and a journey but not a destiny" to the sufferer. "… breast cancer is a very dangerous disease because if you joke with it, it will kill you just like that" (W5) Once people get to know that you have cancer, they shout hey! Because everything that has to do with cancer is deadly so why should people get closer to you.
(W6) It is all about having a caring man around you who will go through thick and thin with you. (W7) Due to some of the beliefs and perceptions participants had about breast cancer, two participants refused to go for surgery after diagnosis. They shared the belief that the breast is the heart of every woman and that once your breast is removed, you will die.
…Recently a lady died in our area and I heard she had breast cancer and went to do surgery. One lady said that the surgery is what killed her. (W9)

| Perception of family and friends on breast cancer
According to the participants, the perceived spiritual causes of cancer were reflective in the behaviours and attitudes of friends and families in daily interactions with such people.
A participant reported that her mother believed breast cancer is a contagious disease and therefore prevented her from feeding her only child. She also said that due to her disease state, she was not allowed to share plates and cutleries with the rest of the family.

| Work and employment concerns
Most of the participants abandoned their work to take care of themselves. Some participants cited treatment effects and stress as reasons for their inability to work.
I get stressed up and stress is not good so I had to slow down for a while. I finally withdrew from work totally.

| Cost of treatment and financial challenges
Most of the participants complained of financial constraints and the high cost of bills with the treatment of breast cancer. The inability of the national health insurance to cover the full cost of treatment made it difficult for some participants to initiate treatment on time.
… because of financial challenges, I could not go for chemotherapy. I also realized that it is not just once but involves six cycles so there was no way I could afford it. More so, I was told insurance does not cover the drugs and they are expensive too.

| Secrecy
Subthemes under this theme include non-disclosure of diagnosis, selective disclosure, perceived stigma, withdrawal and isolation,

| Non-disclosure of diagnosis
Most of the participants preferred keeping their diagnosis to themselves because they did not trust people. A participant indicated that she could not tell her Pastor for the fear that the Pastor might use her diagnosis to preach from the pulpit.

| Selective disclosure
Some participants selectively informed their partners, children, close family members and a few significant others. Those who disclosed it to their partners and children did that because they Other participants informed those who were close, trustworthy and could keep a secret. In some cases, the disclosure was partial.
According to some participants, the word cancer was not mentioned in their disclosure; however, the close relations only knew they were not well.
My siblings are aware of it but for my prayer group Some participants did not disclose their breast cancer diagnosis because they perceived they may be stigmatized.

| Perceived stigma
The embarrassment or disgrace attached to breast cancer prevented participants from disclosing their diagnosis to some family members and significant others because they perceived they may be stigmatized and isolated.
I stay in a compound house with other families and if they get to know of my condition, they will not come close to me and they will spread it in the neighbourhoods. (W12) Why should anybody know that I have breast cancer, they will also add their own story and spread it. It will become like a stigma on me and people will not get close to me anymore.
Some participants also felt that if they share their diagnosis with people, especially their friends, they would associate every subsequent complaint to breast cancer. One participant believed that she would lose her respect, royalty and be blamed for bringing a bad disease into her Royal family.
…at the workplace, it also happens that if anything petty happens to you, they will pass comments like: 'Oh this person she is sick don't mind her.
Due to perceived stigma, a participant did not seek support which is affecting the education of her children.
If I bring any maid to the house, she might tell people about my condition and I will be stigmatized. …At times I hear people ask why my last born is not going to school and he tells them mummy says I should not go today but the reason cannot be shared. (W9)

| Isolation and withdrawal
Some of the participants narrated that body changes in breast cancer treatment is obvious. To avoid being noticed of the body changes, they relocated to a new neighbourhood.
I have changed physically and if I continue to stay in the neighbourhood, people will begin to ask questions and I cannot stand it. … when my skin regains its colour, my hair grows and other things reverse after treatment, I will go back but for now, no! I am very sociable and cannot confine myself to the room so I think what I did is the best. (W7) Other participants who did not relocate also withdrew from social programmes like wedding ceremonies, funerals, church service and other family programmes. They did so either because of their wounds after surgery, too weak and unable to walk or wheelchair-bound due to cancer metastasis to the spine.   Vijayasiri et al., 2018). Many of these studies recorded low knowledge among populations on cancer causes, prevention and treatments even among cancer patients (Ryan et al., 2015). Evidence

| D ISCUSS I ON
shows that beliefs about the causes of breast cancer have high tendencies to influence acceptance and participation in cancer screening and treatment programmes (Khan, Leong, Ming, & Khan, 2015;Tranberg et al., 2016). Unsurprisingly, the inaccurate beliefs shared in this current study had an impact on participants' decisions to keep their diagnosis secret from families and friends. Negative beliefs such as breast cancer being a shameful disease from evil spirits and also contagious are suggestive of the social stigmatization of patients (Sanuade et al., 2018;Taha et al., 2012). In places where such beliefs are absent, cancer patients freely disclose their diagnosis (Meacham, Orem, Nakigudde, Zujewski, & Rao, 2016;Simon, Tom, & Dong, 2017).
The high cost of breast cancer treatments as reported in the study supports several similar findings from different context including low-and middle-income countries (Ekwueme & Trogdon, 2016;Pisu et al., 2017). Currently, financing cancer treatment in Ghana comes as the sole responsibility of the individual patients and the treatment begins with a series of diagnostic investigations that are typically financed out of pocket payment (Twahir et al., 2019;Vanderpuye et al., 2017). Furthermore, the three available treatment strategies: chemotherapy, surgical interventions and radiotherapy are associated with exorbitant costs over a long period (Vanderpuye et al., 2017). The average cost of chemotherapy in Ghana ranges between $ 270-$ 360 depending on the facility one attends. Surgeries like removal of a lump or a breast may cost as high as $100-$200 (Giordano et al., 2016). In most cases, treating the side effects also come with additional costs all borne by patients as out of pocket payments (Palesh et al., 2018).
Culturally in Africa, sick people are expected to be shown sympathy by the family and society but in instances where the sickness has social and spiritual connotations, people hide their sicknesses to ward off social sympathy, prevent stigmatization and social isolation.
This is predominant in Africa as reported by Muliira et al. (2017) pants reduced their social interaction by abstaining from social gathering and some relocated. This is a common practice not only among breast cancer patients but also reported by Smith et al. (2016) where people diagnosed with HIV/AIDS relocated when their families and friends got to know of their health condition, some even stopped going to church to avoid being stigmatised through preaching. In the current study also, one person did not tell her pastor about her diagnosis for fear of the pastor using it for a sermon.
The economic burden of breast cancer in young women is higher than any other cancer type because young women diagnosed with breast cancer become less productive due to negative effects of treatment, they take days off from work to access health care, have reduced working hours and pay higher bills for medical attention and counselling (Ekwueme & Trogdon, 2016;Pisu et al., 2017).
Correspondingly, this study found that the participants were all working before their diagnosis but due to the effects of treatment, most of them halted work for some time, abandoned work to care for themselves and others changed jobs to less demanding ones due to stress. Cardoso et al. (2016) support these current findings with their study result which indicated that women diagnosed with breast cancer change work for less demanding ones with lesser salary and less stress which results in income decline. Although some of them remained with their employers, they experienced dissatisfaction in their jobs for not being able to put up their best (Tamura, Sakaguchi, & Yamanaka, 2019).
The high cost of treatment gave participants financial challenges.
The national health insurance of Ghana does not cater fully for the cost of treating breast cancer. Participants paid for their laboratory investigations and treatment cost, but this was not the case in the advanced countries. Williams and Jeanetta (2016) reported that health insurance covered for the full treatment cost of breast cancer for most patients in their study. With these financial challenges faced by these women, they had to rely on family members, employers and other people for assistance to enable them go through treatment. A lot of studies have reported similar findings (Sanuade et al., 2018;Twahir et al., 2019;White-Means, Dapremont, Davis, & Thompson, 2020). Amid the financial difficulties, some employers promised to assist some participants with payment of hospital bills; however, these promises are often informally arranged and rarely redeemed.

| CON CLUS ION
Breast cancer in young women comes with a lot of social and economic challenges. The disease puts a lot of financial burden on young women when they are unable to work as a result of negative treatment effects. Society's deleterious beliefs and perceptions about breast cancer make these women perceive they are stigmatized and therefore isolate themselves.

| RELE VAN CE TO CLINI C AL PR AC TI CE
There is a need for healthcare providers to care for breast cancer patients in way that would not communicate further stigmatization within the health facilities. Again, healthcare providers should intensify public education on the risk factors of breast cancer and also demystify the numerous perceptions and beliefs about the disease.

ACK N OWLED G EM ENT
We acknowledge all participants who shared their rich experiences with us.

CO N FLI C T O F I NTE R E S T
No conflict of interest exists.

AUTH O R CO NTR I B UTI O N S
MI: Conceptualization of the study. She is responsible for the selection of the methodology, investigation, resource mobilization and data analysis. She participated in the initial drafting and editing of the manuscript. LAO and LA: Conceptualization, selection of the methodology, supervision and formal analysis of the study. They were also involved in the drafting, reviewing and editing of the manuscript.

E TH I C A L A PPROVA L
Ethical approval was gained from the Noguchi Memorial Institute for Medical Research, Ghana, NMIMR-IRB CPN 111/15-16.

DATA AVA I L A B I L I T Y S TAT E M E N T
The data sets for this study are available from the corresponding author on reasonable request.