Exploring Positive Survivorship Experiences of Indigenous Australian Cancer Patients
Abstract
:1. Introduction
2. Materials and Methods
2.1. Recruitment and Sampling of Patients
2.2. Interviews
2.3. Data Analysis
2.4. Reliability/Validity
2.5. Ethics Approval
3. Results
3.1. Resilience
3.2. Communication and Relationships
4. Discussion
5. Conclusions
Supplementary Materials
Acknowledgments
Author Contributions
Conflicts of Interest
References
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Impact of Diagnosis |
What were your thoughts when you first received your diagnosis of cancer? How did you cope in those early days following the diagnosis? Do you feel like you had enough support in those early days? Often, patients report that their families have a tough time dealing with their diagnoses, how did your family cope with your diagnosis? Has anyone in the family taken time off work to help care for you? Has that caused any financial strain? |
Communication with Health Care Staff |
In terms of communicating with health professionals (such as doctors and nurses), have you had any difficulties? How would you describe your relationship with these health professionals? Did you feel you were able to approach them with any concerns you had? Often patients may be under multiple specialists and doctors, including their GP, and there is sometimes a concern amongst patients that there isn’t sufficient communication between the different treating teams. Do you have any thoughts about this or have you experienced anything similar? |
Decision-making |
In terms of treatment—were you given choices? How did you decide on what treatment to have? Some people say that they sometimes have a brief moment where they consider not going through with treatment, has that ever been the case with you? Did you feel well-supported in your decision making process? For example, did your family have any input in the process? |
Support |
Did you notice any changes in the family dynamics since you received your diagnosis or commenced treatment? Have you been able to openly discuss with family and friends about your diagnosis or your experiences with treatment? Who have you sought support from? Have you received any formal counselling or been offered it? |
Characteristics | Number of Participants (n = 12) |
---|---|
Gender | |
Female | 9 |
Male | 3 |
Age (years) | |
20–44 | 4 |
45–64 | 3 |
65 or older | 5 |
Location of residence a | |
Major City | 8 |
Inner Regional | 2 |
Outer Regional | 2 |
Highest education level | |
Primary school | 1 |
Year 10 or equivalent | 6 |
Year 12 or equivalent | 1 |
Community college (Vocational Education) or University | 4 |
Employment | |
Full-time paid work | 2 |
Part-time or casual paid work | 3 |
Centrelink/Social security | 5 |
Home Duties | 1 |
Retired | 1 |
Type of cancer diagnosis | |
Breast cancer | 5 |
Lymphoma | 4 |
Other cancers (lung, thymus, head and neck) | 3 |
Treatment type b | |
Surgery | 8 |
Chemotherapy | 10 |
Radiotherapy | 6 |
Other (hormone therapy, stem cell transplant) | 3 |
Primary cancer vs. recurrence | |
Primary cancer | 10 |
Recurrence or metastatic cancer | 2 |
Theme 1: Resilience | |
Subthemes: | Quotes from Patients Demonstrating Subtheme |
1. I‘m a fighter | “From the beginning, I saw the thing from a positive viewpoint. I didn’t think that it was going to end my life, I thought, “no, it’s not going to end my life, I’m going to look forward” (#2805) “If we look at cancer as a dark hole, it’s like this balloon that we tie to our hand, a black balloon, if we don’t move forward, the balloon will always be there. This dark hole will always be there. But if we’re moving forward, where will the balloon be? It’s behind you … so that’s how life should be. So that dark hole or balloon, leave it behind.” (#2805) “Everyone says I’m a fighter” (#2562) “you can’t be a weak person in society today” (#2692) “I’m a positive person and I always have been … as I’m not going to let anything burden me” (#2692) “You treat the cancer, not as a disease but as another entity you’ve got to battle to prove to yourself that you deserve to live” (#2694) |
2. Support from family and friends | “Did I mention that my parents come to nearly all my appointments with us as it was easier for them to hear first-hand from the doctors what was happening or going to happen and for them to be able to ask questions. I found it all very hard to take all the information as it was very overwhelming. So it was great to have all the extra ears.” (#2785) “I have a lot of support and I’m very lucky to have that support … I think without it, even my friend, with the way, how positive she is … that I probably wouldn’t be at that stage you know” (#2693) “I’ve got me grandkids here and me daughter here. I’ve got everybody that’s around me, everything’s right” (#2514) “See I’ve got my dad’s cousins, they went through with cancer and that. They’ve been helping me out and everything” (#2562) |
3. Coping with cancer | “I feel in life we are all dealing with a lot and if we could all just stop and realise that it isn’t just us but everybody that is dealing with many things. Then we, as a society, would be more understanding. We should take the time to listen and hear what people have to say as we can all still learn so much from life.” (#2785) “And then it’s just funny how things turn out you know that after all, you know you get one (breast) taken off … I’ve accepted that I’ve had a mastectomy and like I walk around home with no shirt on you know, I’ve accepted it” (#2693) “I think that’s (faith) another thing that has given inner strength” (#2805) “I think it also makes you more humane to what other people, because we all have our abilities and we all have our strengths but I think this has strengthened me and to be more to have fellow feeling” (#2805) “I said, ‘just take the whole thing off’, I don’t want to go fiddling and fussing, scraping and scratching so take the whole thing” (#2805) “It just makes you realise that you don’t really know … Don’t put it off … If you want to do anything in particular … do it because you don’t know, you could end up with a serious problem, you may not get to see it.” (#2774) |
4. Drawing strength from past experiences | “I lost my partner 21 years ago and I’ve always been, to do things meself. If anything has to be done, it’s got to be done you know.” (#2692) “ I don’t let anything, oh well, a lot of people have worse things and she had a terrible cancer and I thought well, I’ve got really nothing to whinge about you know, cos I was lucky cos .... (sister), she’s had a terrible husband and I’ve had a good life compared to her so I said well, why should I sit and swell, feel sorry for meself and she’s my inspiration now to keep going” (#2692) “after seeing my Mum go through all that nothing that happens to me can compare … I knew what I had to do to get it fixed and what else can I say or do. Just do it” (#2695) |
Theme 2: Communication and Relationships | |
Subthemes: | |
1. The art of communication | “They made it simple and clear to me … Written info yeah, everything … they showed me, they showed me everything, everything that I could possibly have…very helpful” (#2514) “If I had any problems, the doctor would explain it to me anyway. It was very black and white.” (#2774) “I had radiotherapy on both of them. I didn’t have to have it on the right if I didn’t want to but I opted to because I thought, “best to have it done, rather than wait and see if it turns into cancer.” (#2774) “asked them all the questions and they answered it for me and that. I was fine with the doctors and the nurses” (#2562) “So these are the questions I had written down and they were beautifully answered for me you know? If it wasn’t the doctor, it might have been the breast care nurse or my councillor” (#2805) |
2. More than just a number | “They treated (me) as a person ... They would sit with people for virtually that entire four hours, just talking to them you know reassuring them, that everything is fine and keeping an eye on them, you know just chatting sometimes.” (#2694) “And to be honest—what helped me too was seeing the nurses coming in with a smile on their faces—giving my medication or something. That helps a lot.” (#0000) “And the doctors here and even the breast care nurse here, they were fabulous ... And then the breast care nurses over at the (hospital), they made sure that they came up and said hello and see how the girls were going, you know the breast care nurses, they were really good, they were absolutely brilliant ... out of the blue they give you a call and say ‘how’re going?’ ‘yeah good’ ‘that’s great, it’s really good to hear that.’ They were really on the ball” (#2805) |
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Share and Cite
Tam, L.; Garvey, G.; Meiklejohn, J.; Martin, J.; Adams, J.; Walpole, E.; Fay, M.; Valery, P. Exploring Positive Survivorship Experiences of Indigenous Australian Cancer Patients. Int. J. Environ. Res. Public Health 2018, 15, 135. https://doi.org/10.3390/ijerph15010135
Tam L, Garvey G, Meiklejohn J, Martin J, Adams J, Walpole E, Fay M, Valery P. Exploring Positive Survivorship Experiences of Indigenous Australian Cancer Patients. International Journal of Environmental Research and Public Health. 2018; 15(1):135. https://doi.org/10.3390/ijerph15010135
Chicago/Turabian StyleTam, Laura, Gail Garvey, Judith Meiklejohn, Jennifer Martin, Jon Adams, Euan Walpole, Michael Fay, and Patricia Valery. 2018. "Exploring Positive Survivorship Experiences of Indigenous Australian Cancer Patients" International Journal of Environmental Research and Public Health 15, no. 1: 135. https://doi.org/10.3390/ijerph15010135
APA StyleTam, L., Garvey, G., Meiklejohn, J., Martin, J., Adams, J., Walpole, E., Fay, M., & Valery, P. (2018). Exploring Positive Survivorship Experiences of Indigenous Australian Cancer Patients. International Journal of Environmental Research and Public Health, 15(1), 135. https://doi.org/10.3390/ijerph15010135