Family Caregivers’ Perspectives of the Economic Burden Imposed through Caring for Family Members with Cancer in KwaZulu-Natal, South Africa

Background This study explored the perspectives of family caregivers on the economic burden imposed through caring for their family members who are living with cancer in KwaZulu-Natal. Methods This study employed qualitative methods to explore the subjective experiences of the family caregivers caring for family members living with cancer, drawing from the interpretivist paradigm. Data saturation was reached after conducting 20 in-depth interviews among family caregivers. These family caregivers were either actively involved in caring for or previously had the experience of caring for a family member with cancer. Interview questions focused on the caregivers’ perspectives of the economic burden of caring for a family member with cancer. Results Three key themes emerged from the analysis of the research findings. These themes were: loss of income, financial coping prior to the cancer diagnosis, and financial challenges due to the cancer diagnosis.

to the families (3,4). The FCs receive little to no compensation for the financial burden they incur in the care giving process and they receive little financial support from the government (3,5). This economic burden often goes unrecognised by health policy makers and society in general, especially in LMICs (6).
In addition to the psychosocial and emotional burden, care giving creates a financial burden for FCs, as care giving is not limited to physical and emotional support, but also includes financial support (2,7). Studies have revealed that FCs adjust their working hours, as they need to either leave work early or take leave, often unpaid leave, resulting in reduced pay, while others work from home in order to fulfil care giving demands (2,8,9). This has long-term financial implications, as it affects FC's financial saving efforts (2). An Irish study revealed that, out of pocket costs of cancer care imposed a direct financial burden to FCs, especially for those in low-income households and contributed to considerable financial strain on FCs (6). In another American Study, many FCs reported to have lost most or all of their family savings, as a result of care giving, and others reported one or more drastic financial or social changes, since the patient's cancer diagnosis (10). Furthermore, high medical expenses may result in patients delaying or not adhering to treatment to avoid these costs (11,12) A review by Muliira et al, demonstrated that older African women with cancer often reported poorer health and were likely to suffer with multiple health complications, due to their poor economic situation that prevented them from obtaining an income to cover the cost of their illness (13). This was largely, as a result of unemployment, low education, low-income and residing in rural areas (13).
A South African study of breast cancer diagnosis and distance from diagnostic hospitals revealed that breast cancer patients, who lived further away from the hospital, were diagnosed with advanced stages of cancer compared to those that lived closer to the hospital (14). This was mostly due to the unaffordable transportation cost to the hospital of which are increased as cancer patients are often accompanied by their family caregivers resulting in more travel costs (14). The lack of medical insurance by many patients remains a key challenge to early access to diagnostic and treatment services (14). Medical insurance also reflects socio-economic inequities, since as it is only available to those who can afford it (14,15). Poverty exacerbates the burden of cancer care and further complicates the caring process, including patient transportation to the hospital and access to treatment (1,16

Study Design
This study explored the perspectives of the FCs on the economic burden imposed through caring for their family members who are living with cancer in KwaZulu-Natal (KZN), using qualitative methods 4 (17). The study was rooted in the interpretivist paradigm, in order to understand the care giving experiences and perceived financial burden through the subjective perspectives of the FCs (18). The interpretivist paradigm allowed the researchers to discover the participants' realities of their economic burden of care giving through their own perspectives, background and experiences of providing cancer care (18).

Study Setting
This was a community-based study conducted in three (Chatsworth, Wentworth and Umlazi) and two (Sobantu and Imbali) research sites in Durban and Pietermaritzburg, respectively, in the province of KZN, South Africa. The in-depth interviews were conducted in the participants' homes or at a setting that was preferred by the participants within the respective community.

Characteristics of Participants
The participants in this study were primary FCs residing within the study sites and who were or had previously been involved in the daily processes of caring for a family member with cancer. Only FCs above 18 years of age, currently living with or had previous experience of living with the family member with cancer, were invited to participate in the study. All participants voluntarily participated after signing the informed consent form. This study was approved by the University of KwaZulu-Natal The participants were FCs recruited through referral by cancer patients attending cancer support groups and non-government organisations (NGOs), such as, hospices and homes for the sick within the study sites. Leaders of the NGOs and the support groups, as instrumental gatekeepers, played an enabling role in accessing cancer patients, who then referred the research team to their primary FCs.
The FCs of the late cancer patients were recruited through a snowball process with the assistance of other participants who knew them (17).

Data Generation
Data generation was achieved through in-depth interviews (17). The development of a flexible semistructured interview guide, which allowed for follow-ups, probes and unplanned questions, was guided through the reading of the literature (19). Consistent with the literature-supported parameters for achieving data saturation, data saturation for this study was reached at 20 in-depth interviews (20).
At the end of the interview, a short researcher administered questionnaire containing sociodemographic questions was completed.

Data Analysis
Interview recordings were transcribed verbatim by an experienced transcriber. Subsequently, the IsiZulu transcripts were translated into English by the first author. Transcripts were then transferred to the NVIVO 12 software for qualitative data analysis. Data were coded and organized into the identified themes. A thematic analysis was used to identify patterns within the data (21). A deductive analytical approach was used to develop themes, guided through the interview guide questions (22,23). Emergent themes were populated with the relevant data from the participants in a form of verbatim quotes. The sociodemographic information sheets were scanned and saved in a protected folder in a computer and were used to create a table representing the participants general demographic characteristics. Pseudonyms were assigned to each participant's transcript to maintain anonymity and protect their identity (24). At least 65% of the participants had household incomes from two or more streams (Table 1) and   7 these were inclusive of family members who were pensioners and were in receipt of a social grant.

Results
The participants with a single income stream were mostly old age South African Social Security Agency (SASSA) pensioners. However, all participants, irrespective of the number of their income streams, still felt that their household incomes were not enough to support the whole family, given the extra expenses brought about by the cancer illness. One participant reported to have no consistent source of income, as no one was employed in that household, however, they made money by doing people's hair, which was not an everyday activity.

Loss of Income
Participants shared on how the cancer diagnosis and care giving affected their financial income and that of their households in general. The dominant view was that the diagnosis and cancer care giving negatively affected their financial situation. Loss of income, depicted in Fig. 1

Financial Coping Prior to the Cancer Diagnosis
Participants were asked to describe their financial situation before their family members were diagnosed with cancer and before taking on the care giving role, this theme is illustrated in Fig. 1. The following statements arose: "we were prosperous" (Thembi), "I could live" (Max), "I didn't really have any financial problems" (Tracey), "we were a bit comfortable" (Cindy), "I was able to go to work" (Steve), "it was much better" (Mandy), "financially, we were okay" (Zandi). These assertions show 9 that most participants and their families were financially stable before the cancer diagnosis of the patient. Majority of the participants reported to have had a satisfactory financial status before their family members got sick and before having to take on the care giving role.

I had a nice job, I was getting paid well so I didn't really have any financial problems, I was living well and then she [patient] was working but then she was
[medically] boarded in the end because she couldn't work, so they boarded her

Financial Challenges due to the Cancer Diagnosis
The participants were also asked to describe their financial situation after the cancer diagnosis and taking on the care giving role, this theme is presented in Fig. 1. The following statements emerged: "it's not that good" (Cindy), "it's very bad now" (Steve), "things have tightened a bit" (Linda), "it is non-existent" (Mandy), "we had to start cutting down on somethings" (Zandi), "it is difficult and there are a lot of expenses now" (Ingrid). Most participants reported a drastic change to their own and the family's finances after the cancer diagnosis as compared to before the illness of their family members.

It made us poor, I don't think our family ever recovered till now (Thembi).
Well it is difficult now, like I said we have to use money to go to hospital, I have to buy fruits for him, carrots, apples and grate these things to make his juice to give him the nutrition (Wendy).

Life is very difficult that's the truth, money is never enough it's too little (John).
One participant reported that she had not experienced any financial changes before and after the cancer diagnosis of her family member.
Nothing has changed, nothing has been affected…… it is the same, like I said I think it is the type of cancer that she has that makes everything normal (Olivia).
Another FC reported that he did not experience any financial changes or difficulties before or, after, the cancer diagnosis of his family member due to the financial support from his employer as well as the sick family member's employer.
It's [financial situation] still the same because she does still get her salary…… My company also, they actually told me go there, speak to the doctor, and if something that is going to be done which is not in your reach just get it done, we will support you financially……if the doctor gives me a note and I say this hospital, I can't do it because I can't afford it, they say not to worry, they will fit the bill (David).

Discussion
FCs participating in this study consistently asserted that care giving had adverse effects on the household's financial standing. Caring for a patient with cancer added to their financial distress as care giving comes with added unplanned expenses. Several households in this study survived on old age social grants provided to citizens above 60 years of age by SASSA, thereby making care giving financially challenging (25). Although some participants reported to have more than one source of income, it was perceived as not enough, given the high cost of managing cancer (1). Poverty exacerbated the caregiver burden of families that had no constant source of income, this was confirmed in this study as participants reported extreme difficulty in providing adequate care due to the lack of funds to finance care giving resources (1).

Strengths
This study explored the perspectives of the FCs on their economic experiences of caring for a family member with cancer in low-income households and provided a platform for the participants to share their experiences and voice their challenges as caregivers. This study is an important contribution to the corpus of knowledge, in so far as the economic burden of cancer care within low-income households in the South African context is concerned.

Limitations 12
The findings of this study are based on the personal experiences of FCs of low-income households of which 95% of the participants cared for patients who were not under medical insurance nor did they utilise private healthcare facilities, hence they were only treated in public hospitals. Therefore, the findings of this study cannot be completely transferable to other FCs who care for patients who utilise private healthcare facilities or are under medical aid cover as their experiences and perceived economic burden may differ.

Conclusions
The results of this study have asserted that cancer care giving can be financially taxing on families, especially in low-income households. A cancer diagnosis has a long-term negative impact on the finances of the families affected, thus making the financial recovery difficult. It can be concluded that financial support for families caring for members with cancer can lighten the financial burden of care giving. All data generated and/or analysed during this study are available from corresponding author on reasonable request.

List Of Acronyms
Competing Interests