CHAPTER THIRTEEN
“CHEERING MYSELF ON”: BELLA’S STORY
Melissa Anderson and Nancy Chambers
Understanding the life history of an exceptional young adult female, as a Hodgkin’s lymphoma survivor, is the purpose of this study. Researchers conducted an ethnographic life-history study exploring the participant’s events in her life, from childhood to present day, with the goal of examining the adversity she has overcome. The rationale for choosing a life-history format was to permit the participant to guide the interview, allowing for her culture and personal reflections to be explored. Using the life-history framework, researchers seek to tell the story of a person through their own eyes, and within the context of their culture (deChesney & Batson, 2016). Additionally, the life-history approach can teach researchers about how an individual views his or her illness and the problems he or she faces (de Chesnay, 2005, 2015). This style differs from an autobiography in that the researchers are interpreting the story as it relates to a research question, not just relaying the facts (de Chesnay & Batson, 2016). The life-history approach allows the participant to take the lead, while the researcher follows, permitting for the purist form of exploration. Researchers chose this topic because of the limited amount of research on young adult survivorship, and the unique challenges this population faces following a diagnosis of Hodgkin’s lymphoma.
RESEARCH QUESTION
What are the influences, both internal and external, that can help a young adult female overcome the adversity of a cancer diagnosis?
Significance
Hodgkin’s lymphoma is a cancer of the bone and blood marrow affecting the white blood cells having a significant immunological impact on a patient (Leukemia and Lymphoma Society, 2015). Most commonly diagnosed in young adults in their twenties, the 5-year survival rate is 85% (The American Cancer Society, 2015). Although the survival rate is high, the long-term effects can be widespread. Listening to the words of a young adult cancer survivor provided the nurse practitioner researchers with an in-depth understanding of what it means to be a survivor during this stage of life.
Conceptual Definitions
Young adult: Male or female between the ages 18 and 40 years
Survivorship: Living beyond remission or cure from cancer
Health-related quality of life (HRQOL): A subjective evaluation of positive and negative aspects of life as they relate to physical and mental health
Quality of life (QOL): A subjective evaluation of positive and negative aspects of life
SUMMARY OF CURRENT LITERATURE
Before beginning the research, a systematic literature review was conducted using the following key words: Hodgkin’s lymphoma, survivorship, female, young adult, and quality of life. Out of 261 articles that met the criteria, 244 articles were excluded, and 17 were chosen for review. Four common concepts emerged: physical activity, QOL indicators, social support, and fertility needs. For space purposes, only a summary of the literature review is included in this chapter.
Physical Activity
There is consensus among researchers that physical activity increases QOL for cancer patients and survivors (Badr et al., 2013; Belanger, Plotnikoff, Clark, & Courneya, 2012; Gjerset, Fosså, Courneya, Skovlund, & Thorsen, 2011). Research by Gjerset et al. (2011) showed that cancer survivors often have low participation in organized sports and physical activity. No studies were able to make causation as to why few survivors are physically active, and how inactivity affects long-term survival and QOL.
QOL Indicators
Social support, emotional support, and attitude contribute to QOL in a cancer survivor (Bellizzi et al., 2012; Monteiro, Torres, Morgadinho, & Pereira, 2013). Research by Calaminus et al. (2014) showed lower emotional and social functioning in cancer survivors, with higher symptom levels in women. Cancer survivors younger than 30 years of age reported lower levels of social functioning, higher levels of financial difficulties, increased tobacco usage, and more sexual concerns (Hall et al., 2012).
Social Support
Social networking and social support measures are favorably associated with improved physical functioning and HRQOL (Roper, Cooley, McDermott, & Fawcett, 2013; Soares et al., 2013). Levels of stress for the cancer survivor are inversely related to perceived social support, support group involvement, and physical activity (Brunet, Love, Ramphal, & Sabiston, 2014). A study by McLaughlin et al. (2012) suggested that survivors with weak social connections, and little support from friends and family, could benefit from social media interaction and interventions.
Fertility
A study by Eeltink et al. (2013) concluded that 30% of cancer survivors do not know their fertility status. Gorman, Bailey, Pierce, and Su (2012) found that there is value for young adult cancer survivors to have access to information regarding fertility, parenting options, and support navigating these issues. A review of literature found that one of the largest knowledge deficits for young adult cancer survivors is related to fertility needs (Eeiltink et al., 2013; Gorman et al., 2012).
METHODOLOGY
Sample
The research sample consisted of one informant, a 27-year-old Caucasian female diagnosed at the age of 22 years. This was a purposive sampling looking for a young adult female cancer survivor, between the ages of 18 and 40 years, who had overcome the adversity of cancer. The participant was chosen because of her positive outlook on her survivorship. She wears it as a badge of honor and continues to tell her story hoping to inspire others. The informant was enthusiastic, and provided an informative reflection of surviving beyond a cancer diagnosis. Confidentiality was maintained to preserve the participant’s identity, and the pseudonym Bella was chosen.
Procedures
Researchers began by recruiting the participant via telephone. Researchers then reviewed the consent document, obtaining both verbal and written consent from the participant. “The Consent to Perform Research Form,” as created by Mary de Chesnay, was used, and all questions were answered. The location, time, and setting for the interview was chosen by the participant. The researchers and participant met at a coffee shop near the participant’s home. Rapport was quickly attained, and the interview was completed within 2 hours. Researchers ensured comfort and privacy, and the interaction lent itself to a free flow of information.
Instrumentation
Instrumentation used for this study included a semi-structured interview, tape recordings, transcriptions of recordings, a genogram, and a chronological timeline of life events. For the semi-structured interview, both researchers were present and used the format first described by de Chesnay (2005). Changes were made to questions to allow for specificity of participant and her survivorship of cancer. A list of these questions is included in Table 13.1. Both a genogram and timeline were created with the participant to better understand her lineage and perceived important life events. These are excluded from this paper to maintain the privacy of the participant.
Rigor and Data Analysis
The accuracy of this single life history relied on the participant herself, her feelings, and the words she chose to relay her story. Replicability was maintained by following the detailed proposal and using standard interview questions from Table 13.1.
After the interview, verbatim transcriptions of the interview recordings were completed. The transcripts were evaluated by both researchers. Emerging concepts were extracted from the transcripts, and organized into themes.
Table 13.1 Semi-Structured Interview Guide
1. As we explained when we asked you to allow us to interview you, we understand that you were diagnosed with Hodgkin’s lymphoma about 5 years ago and that you are in remission. Tell us how you learned you had cancer. |
2. What was your reaction at the time you learned you had cancer? For example, What thoughts and feelings did you have and what did you do? |
3. How did your family learn you had cancer? |
4. What were their reactions? |
5. What support did you have from family, friends, health care professionals, and so on? |
6. What were the primary ways you coped with your illness? |
7. You mentioned that being physically active helped you become a survivor, can you tell us how that helped you? |
8. Tell us about how you have used your survivorship to help others. |
9. What is the single most powerful force in your life that helps you cope, not just with the diagnosis of Hodgkin’s lymphoma, but also the problems of daily life? |
10. What have we not asked that you think we should have asked? |
RESULTS
Emerging from the interviews were four prominent themes: learned coping mechanisms, physical fitness, employment, and social support. Learned coping mechanisms evolved because of Bella’s difficult childhood. Bella grew up in a home with her mother, father, and sister, who was 10 years older. Bella’s mother was an alcoholic, which had a significant impact on her father’s ability to care for her older sister. His perceived failure in parenting changed the way he cared for Bella. “Dad’s way of fixing our home was not to fix my mom, because he couldn’t do that, but was just to help me.”
Bella described her childhood as busy, always out of the home, constantly being active and distracted. Activities such as sports, music, and community involvement were her father’s way of keeping her out of the house. As she got older, she also made choices to spend her free time with other families.
It’s so easy to be insecure and not want to be a burden on others, and it’s scary to ask people to join them and their family.
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