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

Method

Researchers explored and examined blog content to gain a better understanding of the experiences of YAACs.

Data Collection

Google and Yahoo online search engines were used to identify eligible Web sites. The key words young adult and cancer were used, mirroring the approach used by Clarke and Gudrun.[40] Detailed inclusion criteria were applied to the search results to select a single Web site that best met the purpose of the study. The inclusion criteria are detailed in the Table.

Web sites requiring fees for registration and access were excluded because the study had no funding for such purposes. In addition, the requirement of any form of registration to view the blog implies a level of privacy for the writers,[41] which indicated potential ethical issues regarding the use of such blogs in this study.

The Web site that most corresponded to the selection criteria was chosen (Planet Cancer, http://www.planetcancer.org/). The blogging period was limited to 2011 to contain the size of the study. Limiting the study to a 1-month period, or less, for data collection of naturally occurring online activities is a practice that has been commonly used in several prior studies.[10,42]

The data collection process is unlikely to have been influenced by the researcher, as the data were generated independently (unlike studies that rely on interviews or surveys). The data were collected by adhering to selection criteria agreed by a secondary researcher who did not have any experience in the oncology field (an "outsider").

Study Design

Qualitative descriptive studies provide presentation of the facts of a case in everyday language without in-depth interpretation. These studies offer a comprehensive summary of an event, which is desired when there is lack of relevant previous studies.[43] They are typically directed to observe "who," "what," and "where" regarding the occurrences and are based on naturalistic inquiry, which implies an aim to study certain things or aspects in their natural state (in other words, "as they are").[43] Therefore, there are no manipulations, preselections of variables, or targeted phenomena.

Blog content was generated independently by the YAACs. Therefore, no manipulations could take place regarding the original data used in this study. Valuable raw data were generated at the writer's own will, through his/her words, and at his/her convenience. Moreover, the data in this study were generated over a specified period of time as the writer experienced cancer, rather than requiring the writer to recall experiences after time had passed.

Blogs were written without any structure, questionnaire, interview questions, interviewer pressure, time limitations, or discomfort from an unfamiliar space. This allowed the study to obtain unique data that provides different views on the experiences of YAACs, which are arguably closer to their actual experiences.

The sampling process of this methodology required maximum variation of sampling to allow researchers to observe both common and unique manifestations.[43] A large quantity of the data in this study (a total of 164 blog posts written by 46 authors) were generated over a specific period, allowing the researcher to obtain saturated information regarding YAACs' experiences.

The descriptive qualitative study method was deemed suitable for this study because young adult cancer patients are understudied compared with other age groups. This study was also conducted to provide relevant data to practitioners and policymakers to meet their particular purposes regarding this demographic of cancer patients. The results of this study can be used in the creation of online-based support services or social networks for YAACs.

Data Analysis

Qualitative content analysis was the selected analysis strategy. This method uses verbal and visual data of original events, which are summarized and documented in the form of contexts.[44] Unlike quantitative content analysis, which integrates previous studies by applying a preexisting set of codes, qualitative content analysis is conducted by the simultaneous collection and analysis of data. Qualitative content analysis describes not only manifest content but also latent content. There are no intentions to apply any interpretation to this latent content, but rather the goal is to present the descriptive summary of the data as it is.[44]

"Reflexivity" is the degree of influence exerted by a researcher, either intentionally or unintentionally. Considering reflexivity allows researchers to determine how their values, beliefs, or experiences affect the research process.[45] The primary researcher, a registered nurse with experience working in oncology and hematology settings, had an adequate level of knowledge to understand the technical and medical terms mentioned by YAACs in their blogs. Nevertheless, it is acknowledged that reflexivity could compromise the validity of the research. To ensure a transparent interpretation process, the primary researcher considered reflexivity and used previous experience solely to understand the blog content, such as terminology, nature of treatment, and the diseases. Although conscious reflexivity helped reduce the influence of researcher values, beliefs, and experiences on the research process,[45] it is notable that the data in the study were generated independently without interviewer or research interaction with participants.

A total of 34 female and 12 male blog writers contributed data to this study. Women wrote a total of 136 blog posts and men wrote a total of 28 blog posts. The analysis process examined only blog content related to cancer. Non–cancer-related blog entries were excluded. The primary investigator conducted line-by-line examination in consideration of both manifest and latent content. By using open coding process, all topics were identified as they arose. The identified topics were grouped together and summarized to provide descriptions of each YAAC's cancer journey. At the end of the data analysis process, 10 main themes were identified.

Approval to conduct the study was granted by the University of South Australia's Human Research Ethics Committee. Online illness narratives require careful ethical consideration, as search engines can potentially locate deidentified direct quotes in their original narrative forms, which may be identifiable.[46]

To protect the participants' identities, direct quotes of sentences and any personal information, such as names, user names, e-mail addresses, and geographic locations, were not included in the study. Each individual was coded using numbers and letters.

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