Methods: We used a qualitative descriptive design and conducted unstructured interviews with 20 purposive selected participants, 10 men and 10 women, who were between the ages 20 and 65 (average 42.1; SD±12.3), identified as primary family care giver by cancer patients treated at the specific hospital. One opening question “Please tell me what it is like for you to live with a family member with cancer?” was asked. Probes and prompting questions were used to clarify issues and enhance an in-depth description of the participants’ experiences. Field notes were also taken. Data gathering and analysis occurred concurrently until data saturation was achieved. The interviews were transcribed verbatim immediately after the interview and the field notes were inserted at relevant points. Qualitative content analyses analysed the data.
Results:
Three themes arose from the data: responses towards a cancer diagnosis; taking the role of the care giver and living a changed life with a changed person. Learning their loved one was diagnosed with cancer was a shock to most of the participants. However, there were those for whom cancer was yet another diagnosis as their family member was sick for as long as they could remember. Not all the participants knew what cancer was and some waited for it to go away. Most participants wanted to be strong when learning about the cancer diagnosis, but some experienced anger and stress about the situation they found themselves in. Participants were overwhelmed with the care responsibilities which had a negative influence on their work and family life. The additional responsibilities resulted in unplanned financial expenditure and merely getting and accompanying the sick person to hospital was a major challenge. Some participants felt emotionally broken and alone in this journey and experienced the rest of their family as uncaring. Not only had the lives the participants knew changed, but the person in their care also changed. Participants had to put their own lives on hold and make sacrifices involving their children, work, possible relationships and their normal activities to care for the sick person who in many instances became a person they did not know. Most of the participants used religious practices to cope with their situation, however, some used other coping mechanisms like recreation and even smoking.
Conclusion: Caring for a family member with cancer was not easy. Cancer was not known to all and created fear and uncertainty about the present and future. Participants had to sacrifice their normal lives and had to live with person changed by the cancer and its treatment. The burden of care had a negative influence on the emotional well-being of the care givers and those with a small or no income could not cope with the additional financial burden.