If only it were that simple. But, for physicians and patients, being a survivor means many different things, ranging from clinical definitions and test results to emotional and physical milestones. But if you ask most cancer patients, they will tell you they did not in any way feel like a survivor the day they learned they had cancer. I surely did not. Instead, I felt scared and in disbelief. While my doctor gave me hope by telling me my cancer had been caught early and my prognosis was good, I was afraid of how I would respond to chemotherapy, and whether it would work.
But on that day, I also vowed to do my best to get through the treatment and fight hard to survive. Fast forward four months, when I finished the last of 18 weeks of aggressive chemotherapy treatments. But I did not ring the bell that day.
While these cysts are common and often temporary, this finding added yet another layer of doubt. Happily, the liver cyst was gone the next time I was imaged, and I began the next phase of my cancer journey: complete remission. Some struggled with threats to their identity. They felt that the new reality did not correspond to their self-image.
This was mostly due to not being able to fulfill an old role like parenting or working in the same way anymore, or an experienced change in personal characteristics. One of the participants said:. Others found it hard to deal with their physical limitations ; especially with the feeling that their body had let them down, and might do that again in the future:. Well, what you hear is: I will die. It takes a while before you pass that. And I am. And you think your own body is tricking you. And it takes a while before you regain that trust. Most participants indicated to be confronted with death at some point after diagnosis:.
We had cancer at the same time and… yes, death is quite confrontational. Then it really gets close to you. A few people claimed they had barely thought of dying since they were diagnosed. Most people felt more awareness of the fact that life is ending and that you have no control over it. Some people indicated that they had a fear of passing the cancer on to their offspring. One person mentioned that she experienced a loss of freedom , feeling like the cancer took control over her life and behavior. Cancer controls me, and I have no control over my life anymore. The majority of the participants answered affirmative when asked if they needed help with meaning making.
Most wanted help from a professional:. Others perceived a specific need for peer support, some specifically indicated that giving peer support to others is meaningful. You can be a companion for others.
I think that that gives meaning. A few people noted they had only felt a need for professional help, immediately after the diagnosis. They mentioned that it is important that the help is quickly accessible. Others disagreed and said that help was better suited about one and a half year after diagnosis and after treatment:.
Most participants agreed that when help with meaning making is offered, it should not be named as such. Many people felt offended by the link between meaning making and cancer, because they interpreted this as cancer being meaningful or that it should be considered as such. Some participants expressed a need for help for their partners, who according to most participants, do not get enough attention during the cancer process.
In this study, we investigated the perception of meaning making in cancer survivors. We found that, in general, cancer survivors experienced more meaning after cancer in at least one specific way, most frequently related to relationships and a newly found, more conscious way of living. Some participants, however, also mentioned to have also experienced a loss of meaning in their lives. These were mostly losses of meaning related to physical impairments or relational distress. In addition, it seemed that some people have an unmet need to fill a gap that arises from a loss of meaningful activities, for example not being able to work anymore.
The discrepancy in the literature between experiencing less or more meaning in life after cancer, was also shown in the outcomes of this study. Our results indicated that meaning making in cancer survivors is often a multifaceted process: in some specific areas e. While this focus group study specifically aimed for more insight in meaning making processes in cancer survivors, also other related issues came up in the discussions.
Many people stated that after they had been diagnosed with cancer they felt unacknowledged or abandoned in some way by most of their social environment, for example their co-workers, neighbors and other acquaintances.
A quality connection with others seemed to play a crucial role in the perception of the cancer survivors in this study. Close relationships with others were often mentioned as one of the most important sources of meaning, while the strongly related concept of isolation often came up as the hardest thing to deal with after cancer.
An explanation of this seeming discrepancy could be that people derived meaning from the intimate relations they have with their beloved ones, like family members and close friends, but simultaneously feel more excluded from the rest of their social environment. When asked if they had a need for help with meaning making since their diagnosis, most people confirmed that they had, confirming previous research indicating that cancer survivors have indeed unmet existential needs . Participants also expressed a need for peer support.
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Some people considered supporting other peers to be meaningful. Also in line with previous studies  —  , our results suggested that some people experience a satisfying, adaptive search for meaning, while others experience a continued, maladaptive search for meaning. Therefore, it is important to gain more knowledge on what the risk factors for meaning making problems are among cancer survivors, who may benefit from meaning making interventions and on how people with needs in this particular area can be screened and reached with interventions.
The results of this study did not only show that some people experience important shifts in meaning making, but also suggested that some meaning making needs are still unmet.
Quality of Life Among Long-Term Cancer Survivors
Future psychological interventions should aim at these unmet needs. To our knowledge, there are no studies that used focus groups to investigate meaning making processes in cancer survivors. This study included a heterogeneous group of patients with various types of cancer to maximize the possibility of exploring a broad range of experiences and opinions from different perspectives.
The results are based on a relatively small sample size, which may hamper the generalizability. However, typically between four and six focus groups involving 4—10 participants is considered adequate .
Surveillance for Late Effects in Childhood Cancer Survivors | Journal of Clinical Oncology
Based on this study, no conclusions can be drawn on whether there were actual changes in meaning making after cancer, but only on whether these changes were perceived. Since meaning making is a personal, subjective process, we consider perceived changes more relevant than actual changes. In addition, there were relatively many people in our sample that had already sought psychological help for coping with cancer.
sketascolbendju.gq These people might struggle more in general than other cancer survivors and therefore also more with meaning making. This may give a biased view on experienced meaning making issues, however, it also sheds a light on a potential target group that might be at risk for meaning making problems. In this study, detailed information on participant characteristics, like marital status, education level, stage of cancer or type of treatment, was lacking.
It is likely that these characteristics influence ones reflection on meaning making. This study was not set up to establish relations between variables, but mostly to generate ideas and explore different experiences with meaning making that cancer survivors might have.
Without this specific asking, participants might not have mentioned these experiences, and this might have been influenced by the moderators, who were experts on this topic. The purpose of this study was not to objectively establish the themes that came to mind, but to gain more insight in the meaning making process specifically. A critical point is that we did not obtain feedback of the participants on our findings to ensure the results are not curtailed by the researchers.
However, the data was punctually transcribed verbatim, and coded and interpreted by three coders separately and discussed with a fourth researcher, to prevent curtailing. The design of this study does not allow to draw conclusions about the prevalence of changes in meaning making in cancer survivors. Nevertheless, the results indicated that at least part of the cancer survivors clearly experience important shifts in meaning making after cancer.
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