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

Abstract and Introduction

Abstract

Background: Young adults are often faced with challenges related to relationships, employment, housing, and emotional development. Experiencing cancer during this time complicates the developmental processes and creates a need for communicating concerns and discussing issues.

Objective: The purpose of this study was to explore the experiences and gain a better understanding of young adults affected by cancer (YAACs) by examining their online narratives (also known as Web logs or blogs).

Interventions/Methods: Inclusion and exclusion criteria were used to identify eligible Web sites. The Web site that most corresponded to the selection criteria was chosen for analysis (Planet Cancer, http://www.planetcancer.org/). The blog content generated in July 2011 was collected. The blogs were written by a total of 34 female and 12 male writers and included 136 (by female) and 28 (by male) blog entries. Researchers conducted a descriptive qualitative examination of blogs to explore YAACs' experiences during/after cancer.

Results: At the end of the data analysis process, 10 main themes were identified: physical burdens, future prospects, isolation (physical and psychological), guilt, mortality, images of cancer, creating a positive attitude, healthcare, online social interaction, and cancer survivorship.

Conclusions: The Internet provides young cancer patients with a space in which to express themselves and to share experiences with those who are of similar age and in similar situations.

Implications for Practice: Blogs can be particularly helpful when patients are isolated or physically unable to interact with other people because of treatment requirements or physical deterioration. Future studies should investigate other types of Internet cancer communities and how they can benefit the development of Internet-based support networks for YAACs.

Introduction

Between 1982 and 2005, approximately 1405 Australian adults aged between 20 and 29 years were diagnosed with cancer each year.[1] Despite accounting for just 1.8% of cancer incidents among all age groups, cancer is the most prevalent natural cause of death among the young adult population.[2]

Clinical trials contribute to improved outcomes from anticancer treatment by investigating and ascertaining superior treatment options.[3] However, such trials predominantly involve children or older adults.[4] One author argues that the lack of survival rate increase among young adults affected by cancer (YAACs) is at least partly caused by a lack of trials being conducted among teenagers and young adults with cancer.[5]

Young adults affected by cancer must deal with the consequences of their diagnosis and treatment. These may include uncertainty of prognosis, adverse effects from cancer and treatments, and changes in activity, which can be further complicated because of patients' developmental needs.[6,7] To meet the specific needs of YAACs and provide better support services, it is important to have a clearer understanding of this group and their experiences.

Online illness narratives are an example of the support networks available through the Internet. A blog (contraction of "Web log") is a monologue narrative that is posted on the Internet for unspecified individuals to read, often allowing for feedback and comments.[8] Young people often share their experiences and reach out to a large number of people without geographical limitations.[9] Blogs not only support patients but also provide healthcare professionals with valuable insights into the experiences of particular groups of patients.[10,11]

The purpose of this study was to explore the experiences and gain a better understanding of YAACs by examining their blogs.

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