Cancer is a disease that instils a fear of death in the minds of most people. For South African mine workers, the fear of death is compounded by a fear of being unable to fulfil work obligations in an industry where employment is central to the miners’ identity.
The purpose of this research was to explore and describe the experiences of mine workers experiencing a cancer diagnosis requiring radiation therapy.
Mining towns in the Limpopo province, Thabazimbi and Lephalale.
A qualitative, descriptive and exploratory study design was utilised. The purposeful sample consisted of 11 mine workers receiving treatment at a radiotherapy centre in the North West province. Data were collected using an open-ended questionnaire and individual in-depth telephonic interviews. Data were analysed using open coding to identify themes.
The themes identified were the emotional experience resulting from the diagnosis, changing family dynamics and information needs from radiotherapy professionals. The psychosocial support required by this group of patients is unique and radiation therapists need to provide wholistic support that is tailored to address the contextual needs of this group of patients.
Mine workers often live far away from their family and are forced to face the cancer journey alone without family support. Oncology professionals, therefore, need to create supportive structures, including emotional and financial counselling, to ensure compliance with treatment protocols, thus facilitating a positive treatment outcome.
Cancer is a disease dreaded by most and usually instils a fear of death in those for whom a diagnosis is made. Worldwide, cancers as a group account for 8% of all deaths annually. In South Africa, cancers as a group ranked second to cardiovascular disease amongst the elderly and account for over 15% of all deaths in the country (Bradshaw et al.
Mine workers in the North West province are often the main breadwinner in the family and their employment in the mining industry provides the family with an income, a medical aid and often a home. Traditionally, mine workers leave behind their families to work and live on sites in a mining camps and mining thus becomes a large part of their identity (Demissie 1998:445). Miners have had a turbulent history in South Africa and have been exploited since the early 1900s. The infamous strike of mine workers in 1946 arguably changed the political thinking of the South African liberation movement at the time and has been said to have had repercussions such as intense persecution of workers’ organisations which continue until today (South African History Online). South African miners can, therefore, be considered to be a unique group who work under difficult and often dangerous conditions with a long history of workers’ organisations that play a significant role in South African politics (Cairncross, Kisting & London
The North West province is serviced by only one oncology centre offering radiotherapy services, which is based in Rustenburg. Rustenburg is home to two of the largest platinum mines in the world and to the biggest producer of chrome in the world. Conditions of employment include the provision of a subsidised private medical scheme but do not always include paid sick leave that is sufficient to cover an oncology treatment protocol.
Radiotherapy requires daily attendance over a number of weeks, which may interfere with the mine workers’ ability to fulfil their work responsibilities. In the mining context, not fulfilling work responsibilities is synonymous with strike action and creates turmoil in lives of the mine workers. In the mining sector, labour unions address the needs of the group and individuals routinely abide by group action rather than by addressing individual needs. The uncertainty that is associated with a cancer diagnosis and the fear of losing mining employment because of absence can, thus, impact the patient’s compliance with oncology treatment protocols.
Radiotherapy is delivered by radiation therapists whose role includes delivering the radiation dose accurately and providing patient care, which includes effective communication, counselling and giving emotional support to patients. Traditionally patient care in radiotherapy concentrates on providing emotional support explaining procedures and responding empathetically to patient’s concerns. The mine worker as a radiotherapy patient presents a unique challenge for radiation therapists as this group of patients experience their employment in the mining sector as central to their identity and fulfilling their work responsibilities appears to be of greater concern than complying with radiotherapy treatment. There is a lack of literature that addresses this unique context from an insider perspective which would provide some insight for radiation therapists when counselling this group of patients.
Radiotherapy treatment protocols require strict adherence to daily treatment attendance over several weeks and can result in acute side effects that impact on quality of life. Radiotherapy patients are encouraged to work together with radiation therapists and oncologists to manage side effects of their treatment so that the dose of radiation required can be delivered as intended. Unintentional breaks in treatment are associated with reduced overall survival rates. An understanding of the patient’s circumstances and context is required to provide empathetic and supportive practical advice to patients. There is a lack of literature that addresses the unique context of the mine worker as a radiotherapy patient. This leaves a gap in the radiation therapist’s ability to facilitate effective patient support in this group of patients, which can only be addressed by research that seeks to explore the experiences of this group.
The objective of this research was to explore and describe the experiences of mine workers experiencing a cancer diagnosis requiring radiation therapy.
The significance of the study was to provide novel data on the experiences of mine workers who have a cancer diagnosis and require radiotherapy. As this group of patients presents a unique context, a need arises to ensure that this group is provided with effective patient care within the radiotherapy context.
A qualitative, exploratory, descriptive design was utilised. Qualitative research designs allow the researcher to explore life experiences in order to gain insight into and understanding of phenomena (Brink, Van der Walt & Van Rensburg
The population for this research constituted mine workers receiving radiation therapy in the North West province. The participants were miners employed in the surrounding platinum mines and from neighbouring mining towns such as Thabazimbi and Lephalale in the Limpopo province. All of the participants were treated daily on an out-patient basis. The mines provided daily transport to and from the oncology centre. Purposeful sampling was used to select participants. This method ensured that information-rich participants were selected to provide information specific to the central theme of the research (Holloway & Wheeler
The total number of participants was 11, which included three females and eight males. The age ranged between 32 and 73 years. The diagnosis included cancer of the breast (3), prostate (2), lung (2), oesophagus (3) and larynx (1).
None of the participants had a tertiary education, but all were able to read and write to a satisfactory level.
Data were collected during a difficult time in the mining sector which was experiencing an extended and volatile strike. The safest method to collect data was, therefore, to allow the participants to record their experiences by providing them with four open-ended questions upon which they had to reflect. This was then followed up with individual telephonic interviews as the participants did not feel safe enough to leave the mine to attend an interview. The open-ended questions were given to participants at the end of their radiotherapy treatment and the resultant responses were used to develop probing interview questions. Interviews were arranged at times that were convenient for the participants. Participants were asked to share their stories of how they experienced their diagnosis and radiotherapy treatments. Participants were also probed for information about how their experiences impacted on their role within the family unit and how the radiation therapist could assist in providing support during the treatment process. The participants were allowed to share their experiences in a language known to both the researcher and the participant. The interviews were recorded and were transcribed by the researcher. Interviews not conducted in English were translated into English by the researcher and were shared with the participants for accuracy of the translation.
During the interviews, a process of bracketing of preconceived ideas was followed by the researcher to avoid bias in the research. This process was carried out by describing her experiences of working with miners as patients to the research supervisors. Descriptive and reflective field notes were compiled during and after each interview and were used to describe possible themes and categories that emerged.
The data analysis process included coding the raw data and finding themes, which generate recognizable patterns. The researcher listened to the interview data and read the transcripts and field notes. The data were organised and categorised into segments for the generation of meaningful codes. Common or similar codes were grouped together into categories and then reduced into broad themes based on the participants’ stories and the personal experiences of the researcher. The themes were interpreted by contextualising the descriptions with that of current literature, which addressed topics related to the theme identified (Holloway & Wheeler
Themes and categories.
Themes | Categories |
---|---|
1.The emotional experience that comes with a cancer diagnosis | Emotions resulting from being informed about the diagnosis Fear of death |
2.Changes that mine workers and their families have to deal with after a cancer diagnosis | Family reaction to the diagnosis The effect of the diagnosis on family roles and relationships The effect of the cancer diagnosis on the mineworkers’ physical abilities |
3.The information mine workers need from radiotherapy professionals | The mineworkers’ expectation of radiotherapy professionals |
The model of Lincoln and Guba (
Ethical permission to undertake the research was granted by the academic ethics research committee of the Faculty of Health Sciences at the University of Johannesburg (ethical clearance no. AEC24-01-2013). The ethical principles of respect for autonomy, non-maleficence, beneficence and justice were adhered to throughout the research process (Dhai & Mcquoid-Mason
Data analysis resulted in the identification of three research themes: the emotional experiences that come with a cancer diagnosis, changes experienced by mine workers and their families, and information needs from radiotherapy professionals.
Emotional reactions experienced after a cancer diagnosis, such as distress and fear, have been widely reported in the literature (Bultz et al.
‘The experience has been an emotional rollercoaster. As men of God I found myself asking him the one question I always preach that people must not ask God. In front of the doctor I sat there and look up the ceiling and I asked why me God.’ (Participant 1, male, miner supervisor)
My experience with the diagnosis was very emotionally challenging. I cannot even express the emotions I felt. I remember my eyes filled with tears. (Participant 4, male, mine worker)
As soon as he said cancer, the first thing I thought was: I can’t die now, and then I didn’t think or hear anymore of what was said. He might have said that my type of cancer was possible to cure, but I simply didn’t catch it. I was worried about my family and how they were going to carry on when I am dead. (Participant 3, female, human resource employee)
Bultz et al. (
Cancer is a family experience. Family members often provide meaningful support to the patient and act as the ‘natural’ caregivers, complementing the skills of the professional healthcare team (Papastavrou, Charalambous & Tsangari
‘Because of the cancer and this long treatment I am not getting my full salary…jaa, I sometimes think of stopping the treatment because as it is I have not been able to go visit my family in the village. My family don’t believe that I don’t have money; my wife thinks I am using the money on my girlfriends. I don’t know which girlfriend will want a skeleton [
‘My family just know I am sick, they don’t know what disease I have. Myself I don’t even understand, I just told them the Doctor says I have cancer and I am going for treatment everyday; I had to tell them because of the salary that I am not getting in full. My wife must just take care of the kids while I get the treatment; hopefully I will survive this and get back to normal and play my role in the family as a man.’ (Participant 5, male, mine worker)
The verbatim quotes above are unique to this context and are inconsistent with the literature, which normally details the experiences of patients who are living with their families. However, participants who were living in the mines with their families reported changes in family dynamics that are more consistent with the literature. Examples of such experiences are described below:
‘I have a sister and sister-in-law that have been so supportive of me. They made a statement when I was diagnosed; they said, “Well, you do not have a cancer, we have a cancer, and we will work through it”. And now, we are on treatment. ‘(Participant 2, female, lamp room controller)
‘My family was more devastated than me, I actually thought they thought I was going to die the very next day and we got closer as a result of the diagnosis, and family started spending more time around me and my two girls. (Participant 3, female, human resource employee)
‘My wife was always very dependent on me. I was very hurt the other day when I overheard her asking her brother about filling up the car because she had no idea. From where I was I could hear she was crying saying “my husband has always done that” it really hurt me to hear her saying that.’ (Participant 1, male, miner supervisor)
Cancer and cancer treatments impact not only the patients but also their family and friends (Stenberg et al.
Mine workers as cancer patients are a unique patient group. They typically have low levels of formal education and come from lower income groups and poor socio-economic background. English is often not their home language, yet it is the language that oncology professionals typically use when communicating with them. Culturally, mine workers are often sceptical of Western medicine and have a wider acceptance of African traditional medicine when faced with illness. Their information needs are, therefore, different from those patients typically reported in oncology literature:
‘I would have appreciated explanation on how my body was going to change with the treatment. I was also in the dark about what I can eat, I definitely think somewhere in those early stages if someone suggested seeing someone or seeing a counsellor it would have made a big difference for me and my family.’ (Participant 3, female, human resource employee)
‘When I arrived in the oncology department I was lost. I did not even know what cancer was I expected an explanation from the professionals. I think it would be nice to have someone, I don’t know a social worker whatever but who knew about individual cancers.’ (Participant 5, male, mine worker)
‘It would have been nice if somebody had said: Is everything going alright for you, have you got support at home.’ (Participant 2, female, lamp room controller)
‘They must arrange with the Mine to pay us full pay even if we are not working.’ (Participant 4, male, mine worker)
Information is vital for patients and their families to make choices and decisions in their efforts to seek a cure and, when this is not possible, to cope with the disease and all that it brings (McCaughan & McKenna
The study was conducted with participants employed in the mining sector at a time where labour unrest resulted in a volatile setting. Data collection was impacted as participants were unwilling to leave the mine setting out of fear of missing out on communication from the employers and union leaders. Therefore, telephonic interviews were conducted and non-verbal language was not possible to record.
Mine workers are a unique group of patients who require special attention to be paid to concerns that arise from their environment and culture. The mine is central to their identity, and their employment in the mining sector becomes a vital part of their cancer journey. The needs of the mine worker as a cancer patient include to be given information in an appropriate format. Limited formal education levels may result in a lack of understanding of cancer and its treatment. Oncology professionals become the sole source of information for many of these patients and often provide information in a written format and at a level which is not appropriate for the knowledge base of the mine worker. This results in many patients experiencing treatment for a disease they do not understand and experiencing side effects for which they are unprepared. A recommendation for oncology professionals would be to provide regular information-giving sessions to this group of patients in a language that they understand and at a level that is appropriate.
Furthermore, the psychosocial support required by this group of patients is unique. Support groups should be developed to replace the support traditionally given by the family of the cancer patient. Financial counselling and a supportive relationship with mine employers should be encouraged to enable an environment to be created where compliance to treatment protocols is not compromised by fear of losing mine employment and financial stability.
This research aimed to explore and describe the experiences of mine workers experiencing a cancer diagnosis requiring radiation therapy. The results showed that mine workers rely on healthcare professionals to get information about their diagnosis and treatment at an appropriate level, who often become the sole source of information for this group of patients. A supportive environment that includes emotional and financial counselling is important to ensure compliance with treatment protocols. Mine workers are often living away from family and face the cancer journey alone without family support. Oncology professionals need to create a supportive structure that could enable the holistic management of the patient and facilitate a positive treatment outcome.
The authors would like to acknowledge the oncology professionals and the patients who participated in the realisation of this research.
The authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article.
The article was prepared by P.R. with the guidance and supervision of H.A.L. and F.B.