The Experience of Young Adult Cancer Patients Described Through Online Narratives

Bora Kim, MN; David Michael Gillham, PhD

Disclosures

Cancer Nurs. 2013;36(5):377-384. 

In This Article

Discussion

The YAAC blog writers were confronting illness and mortality, which were not common issues for individuals in their age range. They dedicated a period of their lives to surviving cancer, focusing on their treatment, and managing adverse effects. One study examined the paradoxical nature of childhood cancer survivorship and provided a similar perspective.[47] They suggest that these survivors lived a portion of their lives in a state of suspension during treatment and recovery, but at the same time, their lives were moving forward.

Writers frequently described life after cancer, often termed survivorship. Many writers were looking forward to living life after cancer in the remission stage. The period of undergoing cancer treatment was often perceived as separate from one's life, rather than a part of it. For instance, phrases often used included "vacating from real life" or "life after cancer." They often wrote as if, upon entering the remission stage, their lives would be same as they were before having cancer.

One author, Schlairet,[48] conducted a survey among older adults (mean age, 64 years) receiving cancer survivorship care. Interestingly, despite the different age group of participants, survivorship issues identified in this study were similar to those identified by Schlairet, including fatigue, fear of recurrence, sleep disturbance, mobility difficulties, body changes, managing long effects of treatment, managing stress, elimination problems, living with uncertainty, weight changes, managing emotions, pain, defining a new sense of normal, diminished cognitive functions, maintaining well-being, poor appetite, and coping with grief and loss. With the exception of elimination problems, all of these topics correspond with issues mentioned in the blogs evaluated in this study. In particular, this study discovered that young adult cancer patients also express mobility difficulties and pain, which can easily have more emphasis on older adult cancer survivors.

However, experiencing similar issues and having similar needs do not mean that 2 different generations have the same priorities.[7] For example, 1 study explored the experiences of adolescent cancer patients and showed how different age groups share similar issues but in different ways.[49] Their study found that adolescent cancer patients feel a loss of control, which was also found in this study. The loss of control in their study stemmed from a lack of comprehension regarding treatment and its process. However, the loss of control experienced by the YAACs in this study came from a lack of control over external factors, such as career, education, and family planning.

The YAACs found the Internet to be a useful tool during a cancer journey, as it enabled them to stay connected with their family, friends, and loved ones, even during a hospital stay or the isolation period due to their treatment. They also used it to update their progress regarding their health or daily lives, to get to know other cancer patients, and to share their experiences and support each other. Similarly, 1 study found that breast and prostate cancer patients used the Internet to seek information about treatments, adverse effects, and diagnostic procedures and to share experiences, make social connections, and offer support.[50] They suggested that Web forums allowed people to make interpersonal expression more directly and discuss intimate bodily symptoms. However, 1 YAAC writer described the Internet negatively when she admitted she was afraid to search for her symptoms on the Internet.

There were no sexual issues mentioned in the blog content for this study. This differs from an analysis of the content from ovarian cancer and prostate cancer online support groups.[51] In another study, sex or sexually related topics were almost absent.[42] This suggests that providing an environment isolated to just 1 gender might enable cancer patients to become more comfortable and discuss sexual issues more openly.

Isolation was frequently observed among YAACs. One interesting finding from this study is that the writers often mentioned being isolated from certain locations or the restriction of their activities, both of which hindered their ability to maintain a normal life. Interestingly, the restrictions mentioned by writers varied. It was not clear whether the variation resulted from different treatment regimes or if they were being advised of different restrictions due to the lack of agreed protocols.

Although the results of this study are generally consistent with existing research, the findings highlight the value of illness blogs for YAACs and provide considerable insight into the experience of YAACs and the importance of supporting their special needs. The data in this study were generated without time constraint or structured interview questions, giving the writers the opportunity to freely express their experiences, feelings, and perspectives. This provides valuable information because of the increasing awareness regarding the importance of considering patients' perspectives in the healthcare system.[10] This study provides meaningful research evidence because it was conducted with a large sample size for a qualitative study, with a wide range of cancer types, including non–gender-specific and gender-specific cancers. However, this study was limited because of its focus upon a single, albeit large, data source. In addition, the data analysis was conducted by a single researcher.

The results of this study provide impetus for further research examining potentials and limitations of the Internet in relation to providing health information and education and interactive support for YAACs. There is considerable potential for prospective studies examining online support interventions designed specifically for YAACs.

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