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

Literature Review

The young adult period is a stage of life in which a person transitions from adolescence to adulthood.[6] Young adults experience a number of developmental milestones, such as developing independence, forming families, pursuing careers, and having children.[7] Receiving a cancer diagnosis and undergoing treatment can impose additional burdens and complications on these developmental processes.[6]

One of the major challenges faced by YAACs is maintaining independence. They need to manage treatment expenses yet may find it difficult to continue any employment during the course of their treatment and recovery. These factors may result in YAACs returning to their parents' home to receive care, and they may become financially dependent on their parents at a time when developing emotional and financial independence is an important target for these young adults.[12]

It is likely for YAACs to have financial difficulties when paying for their health costs, with several studies indicating that older adolescents and young adults are the most underinsured age group.[13,14] This lack of insurance may contribute to delayed cancer diagnosis, hinder access to health facilities, and reduce the amount of treatment received because of financial reasons.[3,15]

Cancer diagnoses can affect psychosocial aspects of life such as identity, self-esteem, and relationships with peers and family.[6] Unexpected cancer diagnoses in young adults are often accompanied by feelings of betrayal, vulnerability, and anger.[16] These young adults need to adjust their thoughts about mortality and poor health, which can be unfamiliar during their developmental stage and may alienate them from healthy peers.[12] Moreover, fatigue from intensive treatment complicates socialization, making these individuals more prone to isolation.[16]

A diagnosis of cancer can postpone education, career plans, marriage, and family planning.[12] In addition, future prospects and life perspective are affected by unexpected illness.[6] One example is the loss of male and female fertility that may be caused by chemotherapy, forcing young patients to face the possibility of infertility before they have contemplated plans for a family.[12,17] Compromised fertility arising from cancer treatment can cause regrets, disruptions in patients' expected life, high levels of stress, and strong feelings of uncertainty.[18]

Young adults are often diagnosed in the later stages across a number of types of cancer.[3,5,19] This may be due to a lack of awareness of cancer among young people or a failure to seek medical attention.[3,5] In addition, general practitioners have shown an insufficient awareness of young patients having cancer, which may lead to misdiagnoses or late referrals to specialists.[19] Late diagnosis can evoke negative emotions in the patient, such as anxiety, stress, anger, or distrust toward physicians.[20] Delayed diagnoses can result in poorer prognoses and increased mortality risks due to advanced disease progression and complicated symptoms.[21]

These delayed diagnoses, coupled with a strong intention to maximize chances for cure, mean that YAACs tend to undergo highly intensive, multimodal treatments that involve a longer duration and lead to greater adverse effects.[3,17] Adverse effects may include complicated surgery, hair loss, skin changes, weight gain, and compromised fertility, all of which may greatly interfere with the patient's ability to establish a positive self-image and self-esteem.[17] Cytotoxic chemotherapy may lead to a decreased neutrophil count, indicating a compromised immune system.[22] The precautions taken to minimize the incidence of infection, such as restrictions on activities and socialization, could also affect patients' quality of life.[22]

The literature acknowledges that health industries are relatively less well equipped for treating YAACs. Several authors argue that the gaps that exist between pediatric and adult oncology services result in young adults being treated in facilities that are not age appropriate.[17,23] Young adults affected by cancer may experience difficulties and needs similar to those of other age groups, but they may have different priorities.[7] Research indicates that treatment in a facility that is not age appropriate leads to a poorer outcome than the outcomes achieved by a combination of age-appropriate care, specialized clinical expertise, and interaction with peers.[23]

The Internet offers a number of benefits to people with cancer. By using health information and engaging in a social network on the Internet, cancer patients can enhance personal empowerment and self-esteem and reduce social isolation and distress. They also experience less depression and trauma from their cancer when they have access to a social network on the Internet.[24,25] The Internet does not require a physical presence and thus provides a unique space in which anonymity may be somewhat protected, allowing traumatic and sensitive subjects to be discussed more easily and openly.[26]

One author argues that storytelling as an intervention has therapeutic benefit and can assist individuals to understand their situations and seek direction for their lives when faced with tragic life events.[27] Storytelling enables individuals to integrate their past, present, and future possibilities, instead of focusing on particular events.[28] Storytelling allows emotionally vulnerable cancer patients to share and reshape their situations and emotions with less pressure and at a pace they are comfortable with.[29] One study reported that cancer patients in a storytelling group experienced reduced levels of stress, anxiety, panic, tension, anger, or lack of control.[30] These patients were able to find meaning for their cancer experience and could more easily solve day-to-day issues during their treatment and recovery. Storytelling intervention carries practical merits: It is noninvasive and inexpensive and presents minimal risk for patients.[30]

Illness blogs are written by individuals during the experience of an illness and often provide an outlet for the writer to cope with stress and uncertainty during illness and treatment.[8] Several studies have shown an increase in the uses and benefits of blogs.[31,32] Blogs enable cancer patients and their loved ones to improve their coping processes by interacting with other people affected by cancer and sharing personal experiences and emotions.[31] Through the blog activities during their cancer journey, patients experience diminished suffering and uncertainty,[8] exchange and validate cancer-related information, and connect to social networks and communities.[33] Blogging is an inexpensive mode of reaching a large number of patients and their companions worldwide and is especially beneficial to cancer patients who are geographically isolated or homebound.[8,34]

Nonetheless, participation in online health activities can also carry negative consequences. Emotionally intense and intimate conversations without physical interaction can easily cause misunderstandings and conflicts.[35] This is especially true among young people, who generally interact anonymously on a regular basis.[36] In addition, disclosure of personal information in a publicly accessible environment can put young people in vulnerable situations, and online bullying and Internet-initiated crimes may be concerns.[37–39] Whether the positive attributes outweigh the negative possibilities remains open to interpretation.

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