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“A Picture is Worth 1,000 Words”: Using Narrative and Photographic Storytelling to Understand the Lived Experience of a Young Adult Cancer Survivor

By

Gabriela Valchanova

Senior Honors Thesis School of Nursing

University of North Carolina at Chapel Hill

April 14, 2020

Approved:

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Abstract

The purpose of this research study is to understand the lived experience of a young adult cancer survivor. Through a qualitative case study design with photovoice methodology, both narrative and photographic storytelling modalities were utilized to gain insight into the lived experience of cancer from a young adult osteosarcoma survivor’s perspective. The selected participant engaged in introspective self-reflection in order to communicate what she felt was most important for others to know about her experience. Using thematic analysis, the findings were then synthesized into four themes: “Physical and Psychosocial Challenges,” “Coping with the Diagnosis,”

“Reflection on Post-Cancer Identity and Future Outlook,” and “Words of Wisdom.”

Keywords: adolescent/young adult, AYA, cancer, survivorship, lived experience, photovoice

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“A Picture is Worth 1,000 Words”: Using Narrative and Photographic Storytelling to Understand the Lived Experience of a Young Adult Cancer Survivor

Literature Review

Living as an Adolescent/Young Adult (AYA) Cancer Survivor

Being diagnosed with cancer during adolescence or young adulthood (15-39 years of age) bears significant physical and psychosocial burden on one’s identity and outlook on life. For one, physical constraints in relation to experiencing fatigue, impaired mobility, memory and

concentration difficulties, and an overall loss of muscle strength has been shown to affect survivors’ ability to execute their activities of daily living and navigate social situations to the extent they did prior to being diagnosed with cancer (Hauken, Grue, & Dyregrov, 2019). Moreover, many have faced psychological distress pertaining to social withdrawal from friends and peers as well as struggles with anxiety, depression, and self-consciousness pertaining to body image post-treatment (Hauken et al., 2019). However, survivors most prominently report an overwhelming fear of relapse and feel apprehensive about being able to function as

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In facing numerous uncertainties regarding their post-cancer life and health status, many survivors acknowledge the importance of finding and achieving their sense of purpose through modes of school, employment, and building families of their own (Brown, Pearce, Bailey, & Skinner, 2016). Despite being generally unprepared for life in the months following their treatment and, consequently, experiencing difficulty re-establishing a sense of normalcy and fulfilling societal expectations and developmental milestones, cancer gives survivors a new perspective on life, as they learn to appreciate the simplest aspects of their daily routines and not take anything for granted (Hauken et al., 2019; Walker et al., 2019). They feel relieved to be completed with treatment and motivated to resume their activities of interest (Walker et al., 2019). Many also develop strong coping mechanisms, become more self-aware of their strengths and weaknesses, and develop a greater appreciation for the family members, friends, and

healthcare workers who supported them through their entire cancer battle (Hauken et al., 2019). Photovoice

Photovoice is a participant-led phenomenological methodology that empowers

individuals to be creative in expressing their unique and impactful perspectives and experiences within the current social climate through photographic representation and story-telling (Burles & Thomas, 2014). This research approach raises awareness about issues that encourage meaningful reflection and informative dialogue (Burles & Thomas, 2014). In relation to the

adolescent/young adult (AYA) cancer survivor population, photovoice can be utilized to understand the triumphs and challenges of cancer survivorship, including the physical and emotional adaptations to life after diagnosis and treatment (Burles & Thomas, 2014).

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cancers were recruited to participate in five group discussions detailing their perspectives, and they were additionally asked to collect photographs relevant to the themes of each discussion session (Yi, Kim, & An, 2016). The themes, which were developed by the participants on a weekly basis, included that of “relationships with others,” “stigma,” “overcoming difficulties,” and “the future” (Yi et al., 2016). Corresponding to these themes, examples of photographs that were submitted and discussed included one depicting a ring that symbolized a survivor’s commitment to a long-term relationship despite the challenges he faced with his partner during his cancer battle and another displaying a sunny sky that the participant claimed to represent hope and opportunity for a brighter future (Yi et al., 2016). In another study analyzing the perceptions of both young adult cancer survivors and their family members, participants engaged in conversations regarding their thoughts on “lost” childhoods, personal identity, and the impact of cancer on their loved ones (Yi & Zebrack, 2010). One young adult participant specifically elaborated on the opportunities he missed to interact with other children while he was in treatment by submitting a photograph depicting an unoccupied tricycle in the front lawn of his home (Yi & Zebrack, 2010). In reference to altered family dynamics, a different participant shared a photograph showing a lineup of plastic toy soldier figurines on a table which she equated with her and her family’s fight against cancer (Yi & Zebrack, 2010). Overall,

participation in this research enabled the survivors to explain their feelings both with and without words, which may not only have a therapeutic effect on them but also an inspiring impact on others about what it’s like living with cancer (Yi et al., 2016; Yi & Zebrack, 2010).

Methods

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photographic representation. It utilizes only one participant because of its qualitative case study design.

Recruitment of Research Participant

I collaborated with Lauren Lux, LCSW, the Adolescent and Young Adult Cancer Program Director at UNC Hospitals, to identify one individual from the UNC Cancer AYA Survivorship Clinic for this study in January 2020. I first contacted the selected individual to describe the study’s purpose, design, procedures, and inclusion criteria. I then organized an in-person meeting with the participant at the Health Sciences Library in Chapel Hill. During this meeting, I provided the participant with detailed information regarding the study and the opportunity to ask questions. I also presented and thoroughly reviewed the study consent and photo release forms. The participant was informed that refusing to participate would not change the support they were currently receiving at the UNC Cancer AYA Survivorship Clinic nor impact any of their established relationships with individuals they interact with in the clinic, including Ms. Lux. The individual agreed to participate and signed both consent forms, and I then began data collection.

Inclusion Criteria of Research Participant

The following criteria was utilized during the participant recruitment process:  Age range: 18-25

 Any sex/gender identity, race, and ethnicity

 Was diagnosed with cancer of hematologic or solid tumor origin

 Currently in remission after completing at least 2-3 years of cancer treatment

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Study Design and Procedures

After obtaining IRB approval from UNC Chapel Hill and UNC Hospitals, I conducted an audio-recorded, semi-structured qualitative interview with the young adult cancer survivor participant. The interview, which was held at the Health Sciences Library in Chapel Hill, was recorded using an Olympus recording device and transcribed using a HIPAA-compliant transcription service that specifically utilizes “confidential interview transcription specialists who are NIH and CITI trained and certified in Protecting Human Subject Research Participants.” I asked the following questions during the interview:

 Tell me about yourself.

 Tell me about your cancer journey.

 Describe your cancer treatment. What helped you cope during the treatment process?

 How has cancer impacted your life, from your initial diagnosis to the present?

 How has your cancer affected who you are as a person?

 What effect did your family and friends have on your cancer experience?

 What effect did your health care team have on your cancer experience?

 What are the most challenging aspects of living with cancer?

 What effect has your cancer had on your future outlook?

 What is the most important thing that you want people who have never experienced

cancer to know about living with cancer?

 What is the most important thing that you want health care providers who work with

patients with cancer to know about living with cancer?

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additionally instructed to title and write brief descriptions of their photographs as well as submit their answers to the following questions:

 Why did you choose these photographs?

 How are these photographs representative of your cancer experience?

 How are these photographs representative of how cancer has impacted your life?

 What have you taken away from participating in this study?

In examining the participant’s interview responses, I identified themes from various aspects of the participant’s lived experience, including that of physical challenges, intrapersonal changes, social impacts and relationships, coping with illness, and future outlook. A second reader concurred with these categories. I also analyzed the participant’s photos and grouped them into the existing themes to enrich the narrative data.

Incentives for Participation

The participant was given a $25 Amazon gift card for their participation at the conclusion of the study. The gift card served as a form of appreciation for their time in participating in the study. There was no potential for coercion considering the monetary amount of the gift card and the short period of time that the subject was asked to participate.

Discussion

Jackie Balliot is a 23-year-old North Carolina native, outdoor adventure enthusiast, and pediatric oncology nurse. She also happens to be a cancer survivor. Through narrative and photographic forms of story-telling, this discussion aims to share her lived experience during her cancer treatments and in her years of remission.

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cheerleading activities at school. She continued to monitor her leg, but the pain was persistent. When Jackie later discovered a painful mass develop above her left knee, she returned to her primary care provider and received an MRI scan. Upon completion of additional scans and labs, Jackie was given a diagnosis: osteosarcoma, a type of bone cancer. She was 15 years old.

Jackie spent a total of nine months traveling five hours from her home in Sylva, North Carolina to Duke University Hospital on a weekly to bi-weekly basis in order to receive chemotherapy and be treated for any cancer-related complications, such as febrile neutropenia. She specifically received three months of chemotherapy prior to undergoing a limb-salvage surgery that led to her receiving a knee replacement and a metal rod through her femur.

Following six more months of chemotherapy, Jackie completed her cancer treatments and went into remission. She now follows-up with her cancer providers annually to complete blood work and obtain scans of her lungs, as osteosarcoma is known to metastasize to the lungs if one

relapses. Jackie also has an echocardiogram every two years to ensure that the chemotherapy has not impaired the functionality of her heart.

The following sections depict Jackie’s perspective living with cancer through four themes that were developed from the synthesis of her qualitative interview responses and photographs. The themes are: “Physical and Psychosocial Challenges,” “Coping with the Diagnosis,”

“Reflection on Post-Cancer Identity and Future Outlook,” and “Words of Wisdom.” All direct quotes from Jackie are italicized.

Theme 1: Physical and Psychosocial Challenges

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fragile state” when revisiting a photograph of herself lying in a hospital bed post-surgery (Figure 1). Because the image depicts Jackie in a vulnerable moment during the course of her illness, she typically refrains from thinking about this fundamental aspect of her cancer treatment in the present because it resurfaces feelings of discomfort.

“I think for me, this photo represents the lows. I look at a lot of photos from my cancer experience and remember them fondly, but to say that the whole experience was full of gratitude and silver linings would be a lie. This photo kind of ‘keeps it real,’ in terms of what having cancer is really like sometimes.”

Figure 1. “Status post-surgery”

Furthermore, Jackie elaborated feeling dismayed by the appearance of her leg upon seeing it for the first time post-surgery (Figure 2).

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Due to her leg’s appearance, she reminisced about experiencing issues with self-esteem and poor body image, both in the past and in the present. However, she has come to appreciate her scar over time as a representation of her strength, courage, and resilience.

“It’s not always easy having such a prominent reminder on my body that I had cancer, but over time I’ve learned to love my scar a little more. This image represents the battle scars I obtained thanks to cancer, and the journey to self-love they’ve forced me to partake in since then.”

Figure 2. “Battle Scars”

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Mucositis. Another one of Jackie’s most significant obstacles during her cancer battle was overcoming mucositis, or mouth sores. In her experience with this common adverse effect of chemotherapy treatment, Jackie recalled feeling agonizing mouth pain that disrupted her ability to engage in her activities of daily living, including talking and eating. She associated this challenge with an image of a breakfast tray (Figure 3).

“I remember ordering room service at a hotel one morning because I was absolutely starving. However, when it arrived to my room, I couldn’t even eat it due to the

excruciating pain. I just stared at my tray, miserably hungry and frustrated, feeling like the side effects would never end.”

Figure 3. “Mucositis”

Being a “normal” teenager. Throughout her cancer treatments, Jackie additionally had difficulties taking part in social activities and staying connected to her friends because of her experience with fatigue. Yet even during moments she felt energetic enough to engage in her interests, she would be overcome with bouts of nausea that ultimately prevented her from the opportunity to interact with others and live as a “normal” teenager.

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fatigue…it just felt like I couldn’t just have a day to feel normal and go do normal things.”

One specific event she was unable to attend was her high school’s winter formal dance. Despite missing this experience, she recollected taking a photograph of herself with the dress she would have worn (Figure 4).

“I remember putting the dress on just for the fun of it one day and snapping this picture. It was the first time that I remember feeling beautiful after losing all of my hair. This is the photo I look back on most frequently when I reminisce on my experience with cancer. I have so much admiration for the girl in this photo, and this photo is a representation of strength that I’m not sure I would’ve discovered had I never been diagnosed with

cancer.”

Figure 4. “Winter Formal”

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many others passed, including Karla, a young girl from her hometown who died from a similar type of cancer.

“I often wonder why she had to die while I survived, despite having such similar

diseases. As I’ve come to learn, many cancer survivors struggle with similar feelings, so much so that this phenomenon has been termed ‘survivor’s guilt.’”

Figure 5. “Survivor’s Guilt”

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“The way that Beads of Courage works is that a pediatric patient gets a bead for each difficult thing they go through during treatment, whether that be a blood draw or a chemotherapy drug or a surgery…As far as Beads of Courage necklaces go, mine is pretty unimpressive (most are several yards long), but there’s a reason. I was pretty “anti-Child Life” during my treatment, simply because I felt too old to be partaking in many of the activities that they do for pediatric patients. My Beads of Courage necklace is small because I did not engage much with Child Life and refused many of their visits in true angsty teen fashion.”

Figure 6. “Beads of Courage” Theme 2: Coping with the Diagnosis

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and be like ‘Hey I’m throwing up, what do I do?’… I would text my cancer friends.” Charlie, her first “cancer friend,” made a particular impact on her cancer experience, as they bonded being the only teenagers on their pediatric unit (Figure 7).

“It can be a really isolating experience being an AYA cancer patient and not feeling like you belong in either the pediatric or the adult cancer units, and I’m so thankful to have made a friend early on who made the whole experience a little less isolating. This photo is a representation of the importance of friendship, particularly with a person who ‘gets it.’”

Figure 7. “Charlie”

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“I do think it’s so hard to support somebody for nine months. And you just don’t really know what to say. And like I said I was being treated five hours away, so I felt like kind of – I felt very supported at first. But then as months went on I felt pretty alienated. I

definitely kept the friendships that I had for the most part. But I felt a little bit disconnected when I started to go back to school. And I felt like I had much less in common with my friends than I did before treatment. And I feel like based on what I’ve heard from my other cancer survivor friends, that’s a pretty common experience.” What ultimately helped her get through her treatments and remain positive was planning her “Make-A-Wish” trip to Hawaii (Figure 8).

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Figure 8. “The light at the end of the tunnel”

Family support. Jackie further reflected upon the immense gratitude she had for her parents and brother making sacrifices to ensure she continued receiving care. She credits them as her strongest support system.

“If having cancer was hard for me, it was 100 times harder for them to watch me have cancer. My dad accompanied me to my many treatments while my mom continued to work to help us get by. I remember it being especially hard for my little brother because he felt like…all of my parent’s attention was on me for nine months, and he really struggled with that. Especially after treatment. But I think that now because of that, me and my brother are closer.”

Cancer support groups. Another significant part of Jackie’s support system during treatment was her participation in cancer-specific social communities. She sought out support resources from organizations such as “Stupid Cancer,” where she was able to attend a conference with workshops detailing various topics related to young cancer survivors, and “First Descents” (FD), an outdoor adventure program that sends survivors on weeklong trips filled with physical activities like surfing, rock climbing, and kayaking (Figure 9).

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Figure 9. “Out Living It”

Moreover, partaking in the FD Facebook groups allows Jackie the opportunity to communicate with other cancer survivors who have had similar health-related experiences and to further discuss survivorship concerns. “It’s just nice to hear that other people have the same fears. And I’m not the only one going crazy.”

Support from healthcare providers. Jackie could not speak more highly of her

interactions with her nurses, nurse practitioners, and doctors. She valued that they communicated with her like a teenager instead of a child and that they inquired about aspects of her life entirely unrelated to her cancer diagnosis. One nurse in particular, Nurse Bridgett, made a profound impact on her care (Figure 10).

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ease. Bridgett and the rest of my incredible oncology nurses inspired me to pursue nursing as a career, and because of them, I am now a pediatric oncology nurse.”

Figure 10. “Nurse Bridgett” Theme 3: Reflection on Post-Cancer Identity and Future Outlook

Post-cancer realizations. In asking how cancer has affected her as a person, Jackie stated that it changed her perception on life and that it allowed her to develop a greater appreciation for the individuals who supported her throughout her journey. “I just cherish my friendships and my relationships and my family more. Because especially my family they sacrificed so much for me. And I just feel forever indebted to them.” Eight years into remission, she also recognizes that being a cancer survivor will always remain a key part of her identity (Figure 11).

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‘cured,’ but I think the relief on my face is palpable in this photo and representative of how I felt reaching such an important milestone in my survivorship.”

Figure 11. “Five years cancer-free”

Planning a future. Battling cancer inspired Jackie to take an academic interest in oncology, particularly in the nursing profession. Since going into remission, Jackie completed the UNC Lineberger-Sylvia Lauterborn Oncology Nursing Fellowship at N.C. Cancer Hospital, received her nursing degree from UNC Chapel Hill’s School of Nursing, and began working in pediatric oncology at UNC Children’s Hospital. Her opportunity to attend college was made possible by the scholarship she received from Cancer for College (Figure 12).

“Soon after my cancer treatments ended, another hurdle loomed: college. More specifically, paying for college, particularly after paying for months of inpatient

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on ability to pay. I was able to attend my dream school, UNC Chapel Hill, thanks to this scholarship. To me, this photo represents silver linings. I’ve had a lot of amazing

opportunities come my way because of my cancer experience, and I’m just endlessly grateful for how they have each shaped my life in such a positive way.”

Figure 12. “Cancer for College”

With her education, Jackie has been able to complete an undergraduate honors thesis reviewing the AYA population’s unmet survivorship needs as well as publish an article about caring for pediatric and AYA patients diagnosed with acute lymphoblastic leukemia. She also currently serves on a committee for “Teen Cancer America” where she helps to give college scholarships to young adult cancer survivors. When asked about her future outlook, Jackie reiterated “I feel like my career will be focused on helping adolescents and young adults with cancer. I don’t see myself doing anything differently for my entire life.”

Theme 4: Words of Wisdom

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resources on issues that are particularly relevant to this population, such as mental health, sex, fertility, and alcohol consumption. She takes this thought one step further by suggesting that hospitals create and implement AYA programs that not only enhance the comprehensiveness of care given but additionally raise awareness about AYAs to the general population. Moreover, Jackie believes that young adults who were initially diagnosed with cancer in adolescence and now receive follow-up health services as adults have their own physical spaces to receive cancer-related care. This initiative will prevent individuals from feeling like “the odd sheep” when making the awkward transition from pediatric to adult settings.

“So on the pediatric side in clinic, I’d always be the only person over 5. And now in my adult clinic I’m like the only person under 75. And I’ve just never felt like I belonged or that I was supposed to be there…I think that there’s been… like a cry for help from the AYA community saying we need resources, we need more support. We’re not children, but we’re not geriatrics, and you know there’s kind of like – you’re treated as one of the other in the hospital.”

Raising awareness. When asked about her thoughts regarding the most important thing she wants healthcare providers who work with patients with cancer to know about living with cancer, Jackie emphasized that AYA concerns be taken seriously when voiced and that cancer providers make an effort to learn about their patients. She hopes to translate these values into her own practice as a pediatric oncology nurse.

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In contrast, when asked about her thoughts regarding the most important thing she wants people who have never experienced cancer to know about living with cancer, Jackie elaborated on the ideas of patience, normalcy, and the longevity of cancer’s impact on an affected individual’s life.

“I think patience is the biggest thing…I felt pressure to keep being normal and go do things even when I wasn’t feeling the best. Also, I feel like everyone says this but treating you the same way. I don’t want to be treated like a cancer patient. I’m still a human, you know? I just have this thing going on right now. But I feel like the biggest thing is that cancer doesn’t end when treatment ends or when you have no evidence of disease. Like it never goes away. There’s always new challenges popping up, long term side effects, fears, and things like that. They don’t just go away when treatment ends, and I think that’s a really, really important point to emphasize.”

Final thoughts. In her final thoughts, Jackie shared that participating in this project afforded her the opportunity to reflect on crucial aspects of her cancer battle and how they have all influenced her current identity.

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otherwise. In conclusion, the main thing that I have taken away from participating in this study is a renewed sense of gratitude for my life and for my hardships.”

Conclusion

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References

Brown M. C., Pearce M. S., Bailey S., & Skinner R. (2016). The long-term psychosocial impact of cancer: The views of young adult survivors of childhood cancer. European Journal of Cancer Care, 25(3), 428-439. doi:10.1111/ecc.12380

Burles, M., & Thomas, R. (2014). “I just don’t think there’s any other image that tells the story like [this] picture does”: Researcher and participant reflections on the use of participant-employed photography in social research. International Journal of Qualitative Methods, 13(1), 185-205. doi:10.1177/160940691401300107

Hauken, M. A., Grue, M., & Dyregrov, A. (2019). “It’s been a life-changing experience!” A qualitative study of young adult cancer survivors’ experiences of the coexistence of negative and positive outcomes after cancer treatment. Scandinavian Journal of Psychology, 60(6), 577-584. doi:10.1111/sjop.12572

Walker, A. J., Lewis, F. M., Lin, Y., Zahlis, E., & Rosenberg, A. R. (2019). Trying to feel normal again: Early survivorship for adolescent cancer survivors. Cancer Nursing, 42(4), E11-E21. doi:10.1097/NCC.0000000000000629

Yi, J., Kim, M. A., & An, S. (2016). The experiences of Korean young adult survivors of childhood cancer: A photovoice study. Qualitative Health Research, 26(8), 1044-1054. doi:10.1177/1049732315599374

Yi, J., & Zebrack, B. (2010). Self-portraits of families with young adult cancer survivors: Using photovoice. Journal of Psychosocial Oncology, 28(3), 219-243.

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