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research-article2014
JPOXXX10.1177/1043454214531334Journal of Pediatric Oncology NursingBreitwieser and Vaughn
Article
“A Day in My life” Photography Project: The Silent Voice of Pediatric Bone Marrow Transplant Patients
Journal of Pediatric Oncology Nursing 2014, Vol. 31(5) 284–292 © 2014 by Association of Pediatric Hematology/Oncology Nurses Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1043454214531334 jpo.sagepub.com
Carrie L. Breitwieser, LISW-S, ACHP-SW1, and Lisa M. Vaughn, PhD1
Abstract A photovoice project was conducted with pediatric bone marrow transplant (BMT) patients to examine their coping skills and interpretation of their experience during a BMT, especially when hospitalized. We also wanted to determine how photovoice could be used within a pediatric BMT unit. Sixteen children (ages 4-14) and 2 young adults (ages 22 and 25) from a pediatric BMT unit participated in the project. Six BMT outpatients participated in the data analysis and evaluation phase. Fourteen clinical staff evaluated the impact of the project on their practice. Three primary themes emerged from the pre- and post-BMT photos, accompanying detailed notes, and BMT outpatient analysis of the photos: (a) BMT is “torture,” (b) BMT is “time slipping away,” and (c) BMT requires normalization, comfort, distraction, and support. BMT patients and staff concluded that photovoice helped express and release emotions regarding the challenges of BMT. BMT staff noted that the results of this project reminded them of the importance of being patient-centered and mindful of patient experience and the therapeutic relationship. Keywords pediatric bone marrow transplant, photovoice, qualitative research
Introduction Bone marrow transplant (BMT) is a complex procedure to replace unhealthy bone marrow with healthy bone marrow stem cells. Although often a life-saving option, pediatric BMT can be an intense and isolating medical therapy (Campos & Olaya, 2011). BMT involves a lengthy inpatient hospitalization, commonly after prolonged prior therapy that sometimes involves years of chemotherapy for children with relapsed malignancy. During the transplant procedure, patients are hospitalized for 6 to 8 weeks on average, followed by at least 6 to 8 more weeks of outpatient follow-up. After the initial inpatient stay, frequent rehospitalizations are common, and ongoing outpatient follow-up is essential. The posttransplant period is unpredictable because of potential complications such as chronic graft-versus-host disease, pulmonary and endocrine complications, and relapse (Buchsel, Leum, & Randolph, 1996). While an average initial hospitalization might be 6 weeks, outliers with severe complications may be hospitalized for many months or even a year. Significant mortality may occur in the first year after transplant, with risk of death depending on the diagnosis for which the transplant was performed (Patenaude, 1990).
During the lengthy, and often frightening BMT procedure, patients experience isolation from the outside world, with only a limited number of caregivers permitted to visit (Molassiotis, Van Den Akker, MiIigan, Goldman, & Boughton, 1996). For the majority of children and adolescents who experience a BMT, quality of life and psychosocial and physical functioning are often greatly impaired (Vannatta, Zeller, Noll, & Koontz, 1998). Specifically, youth who experience a BMT are likely to have a lower health-related quality of life (Felder-Puig et al., 2006; Parsons, Barlow, Levy, Supran, & Kaplan, 1999) and experience depressive, anxiety, and stress symptoms (Campos & Olaya, 2011; McConville et al., 1990; Molassiotis et al., 1996); lack of school attendance and decreased contact with peers (Vannatta et al., 1998); and additional family stress due to the BMT itself (Packman et al., 1998; Streisand, Rodrigue, Houck, Graham-Pole, & Berlant, 2000). 1
Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA
Corresponding Author: Carrie L. Breitwieser, Cancer and Blood Diseases Institute, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH 45229, USA. Email: [email protected]
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Breitwieser and Vaughn The majority of studies about the psychosocial aspects of pediatric BMT have utilized questionnaires completed by proxy reporters (ie, parents, teachers, clinical staff) and have tended to neglect how the child thinks and feels about the BMT process (Parsons et al., 1999). The need to address the patient’s psychological well-being and coping strategies becomes a priority during such a prolonged inpatient stay; finding creative and participatory ways to do so can be challenging. There is research to suggest that participatory and visual storytelling research strategies can be effectively used with chronic illness populations to illuminate youth perceptions, empower participants to discuss relevant issues, and promote health advocacy (Drew, Duncan, & Sawyer, 2010). One such visual method, photovoice, has been found to be a beneficial patient-centered method and has been used with patients who have chronic illnesses, cancer survivors, and those who have been hospitalized (Radley & Taylor, 2003; Yi & Zebrack, 2010). Photovoice is widely used in community-based participatory research and educational action research (Catalani & Minkler, 2010; Wang & Burris, 1997; Wang, Yi, Tao, & Carovano, 1999). In photovoice methodology, participants are given cameras to document aspects of their life (in the current case, experiences with BMT) and then they share and engage in a critical dialogue about the photos in order to capture information about issues of importance to them (Hergenrather, Rhodes, Cowan, Bardhoshi, & Pula, 2009). Using photos in this manner shifts the power to the participants to tell the story of their life from their own perspective and in their own voice. The photos provide a creative and effective way to discuss often difficult and deeply felt issues (Catalani & Minkler, 2010). Recent photovoice studies suggest that children and adults who participate in this type of project are more likely to take part in healthpromotion behaviors (Catalani & Minkler, 2010; Strack, Magill, & McDonagh, 2004). Hence, photovoice can be an effective strategy for engaging pediatric BMT patients about their hospitalization and treatment while understanding the impact of BMT from the patient perspective. Through a modified photovoice methodology, the purpose of the current study was to examine children and young adults’ coping skills and interpretation of their experience during a BMT, particularly while hospitalized. We also wanted to determine how photovoice could be utilized within a pediatric BMT unit. To our knowledge, this study is the first of its kind—photovoice to understand the BMT experience from the patients’ perspectives.
Methods Participants and Setting Children (ages 4 and older) and young adults were recruited through BMT social workers on the BMT
pediatric inpatient unit. BMT outpatients and clinical staff were also recruited to participate in the data analysis phase and to evaluate the project. The study was conducted in a large, urban, tertiary pediatric bone marrow transplant unit in a free-standing children’s hospital. At the time of the study, our BMT unit had 24 inpatient beds, it currently has a total of 36 inpatient beds. In 2012, 98 transplants occurred, and in 2013 there were 92 transplants. Children and young adults meeting 3 inclusion criteria were approached to be in the study: (a) age 4 and older, (b) not too ill to participate as determined by the patients and/or caregivers themselves, and (c) able to obtain parental consent. BMT outpatients and clinical staff were recruited to assist in the evaluation of the project.
Procedure Approval was received from the institutional review board before starting the study. Patients or parents/guardians of children under age 18 were approached by a member of the research team and offered informational sheets, one for the parent and one for the patient that described the project in detail. The photovoice project was then verbally explained to parents/caregivers. They were given a consent form that outlined the study and the risks and benefits of participating and asked to it, giving permission for their child to participate in the study. If patients were over age 18, they were approached in the same manner. If the parents agreed, then the project was explained to the patients, who were asked to give written assent to participate. BMT outpatients and clinical staff received information about the study and gave verbal consent to participate (waiver of written consent approved by institutional review board).
Data Collection Brief demographic information (eg, birth date of the patient, age, diagnosis, race/ethnicity, and date of BMT) was gathered from participants’ medical records at the beginning of the project to describe the sample. Participants, BMT outpatients, and clinical staff participated in either individual interviews or focus groups regarding their perceptions of the project and to provide feedback about the photographs that participants took. Patients were given a basic digital camera, and they were trained on how to chronicle “A Day in My Life,” and use of the camera. For 24 hours the patients had the opportunity to take photos of anything they viewed as part of their day and document thoughts about each photo in a journal. Within a week, the printed photo “thumbnails” and their corresponding journals were reviewed in person with a social worker eliciting thoughts about their
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photos. To begin the discussion, most patients chose their favorite photographs but were not restricted in the number of photos they wished to discuss. During the discussions, patients were asked to think about (a) why they took the picture, (b) what others might see in the photo, (c) how they were feeling when they took the photo, and (d) next steps including what they hope will happen or what might happen next. These questions were loosely based on the SHOWeD questions often used in photovoice: What do you SEE in this photograph? What is really HAPPENING in this photograph? How does this relate to OUR lives? WHY does this issue exist? How can we become EMPOWERED by this, and What can we DO about it? (Wang et al., 1999) The same approach was used with younger children in the study, and they were able to successfully participate. Patients were given the opportunity to withhold any photograph they did not want shared with others. Unless there were unforeseen circumstances (i.e., severe illness, death, early discharge), all enrolled patients participated in data collection at 2 time points: (a) pre-BMT (time of admission up to the day of infusion of cells) and (b) postBMT (30-60 days after the BMT, depending on patient’s length of stay). At the conclusion of the project, each participating patient was given either a CD containing their photos or selected prints of their photos. They were also given the digital camera to keep. After data collection at pre- and post-BMT with inpatients, BMT outpatients participated in individual interviews with social workers to review the inpatient participants’ photographs and discuss the meaning of the photos based on their experience during BMT. In addition, BMT clinical staff participated in 1 of 2 focus groups regarding the photovoice process.
data sources (i.e., gathering data from inpatients, outpatients, and staff; Creswell, 2013). During interviews and focus groups with BMT outpatients and clinical staff, the discussion centered on whether the themes captured the full BMT experience, what they saw in the photos, what the meaning of the photos were to them, and whether or not they had similar or different experiences with BMT. BMT outpatients who had distance from the inpatient experience were able to examine the inpatient photos and reflect on their BMT experience, perhaps with greater insight than the inpatients in the midst of treatment. Clinical staff also discussed the impact of the photovoice study on their practice. The content was documented by the social worker taking detailed notes during the conversations.
Final Sample Sixteen children (ages 4-14) and 2 young adults (ages 22 and 25) from a pediatric BMT unit participated in the preBMT phase of the project, and 12 of the 18 participated in the post-BMT phase; 6 were unable to participate postBMT due to severe illness or death. Participants were mostly Caucasian (83%), 44% female and 56% male, and from a range of socioeconomic backgrounds, reflecting the typical BMT demographics at our hospital. Six BMT outpatients (50% female, 50% male, ages 11-32) participated in the data analysis and evaluation phase. See Table 1 for more detailed information about the demographics of the inpatients and outpatients. Fourteen clinical staff (5 registered nurses, 2 nurse practitioners, 1 physician, 1 dietician, 2 pharmacists, and 3 social workers) participated in 1 of 2 focus groups.
Results
Data Analysis Photovoice discussions often happen in a group setting with all participants present. However, because BMT patients were isolated in their hospital rooms, they could not participate in group discussions. Therefore, one of the social work members of the research team documented through handwritten detailed notes the content of the individual photo discussions. Two members of the research team (CB and LV) analyzed the discussion notes and accompanying photographs across patients for emergent themes that reflected the participants’ experience while in the BMT unit. According to standard qualitative research procedure, all of the data were organized into broad conceptual categories and verified first among project investigators and then among BMT outpatients and clinical staff for clarification, consensus, and credibility of important themes (Lincoln & Guba, 1985). In an effort to establish credibility, we utilized triangulation of
Three primary themes emerged from the pre- and postBMT photos, accompanying detailed notes, and BMT outpatient analysis of the photos: (a) BMT is “torture,” (b) BMT is “time slipping away,” and (c) BMT requires normalization, comfort, distraction, and support. Each primary theme was composed of 2 to 4 subthemes. See Table 2 for an outline of all themes.
BMT Is “Torture” In general, the BMT patients and outpatients characterized the process of BMT as extremely painful both emotionally and physically—a process that is “pure hell, torture” and “not the best time of my life.” Two subthemes clarified the patients’ perceptions of the overall process of BMT: (a) BMT is restrictive and constraining and (b) BMT has physical side effects and is associated with bad memories.
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Breitwieser and Vaughn Table 1. Demographic Information. Participants
n (%)
BMT inpatients Age (years) 4-6 7-9 10-12 13-15 16-18 19-21 22-25 Ethnicity Caucasian African American Latino Other (biracial) Gender Female Male Participation Pre-BMT Post-BMT BMT outpatients Age (years) 11-14 15-24 25-32 Ethnicity Caucasian African American Latino Other Gender Female Male
5 (28%) 5 (28%) 3 (17%) 3 (17%) 0 (0%) 0 (0%) 2 (11%) 15 (83%) 0 (0%) 2 (11%) 1 (6%) 8 (44%) 10 (56%) 18 (100%) 10 (56%)
3 (50%) 1 (17%) 2 (33%)
Figure 1. My IV pole, named “Brutus.” I named it because it’s always with me. The pole looks like a robot.
5 (83%) 0 (0%) 1 (17%) 0 (0%)
BMT Is Restrictive and Constraining. BMT patients and outpatients described a restrictive and constraining environment with many rules and regulations. Patients took photographs that showed a world of poles that are “always with you,” central lines, medicine, chemotherapy, treatments, pumps, pain, no privacy, isolation, restrictive food experiences, tubes, not wanting to eat, and sickness. See Figure 1.
3 (50%) 3 (50%)
Note. BMT = bone marrow transplant.
I am a guy that likes my privacy and here there is none. Table 2. Primary Themes and Subthemes. 1. BMT is “Torture” BMT is restrictive and constraining BMT has physical side effects and is associated with bad memories 2. BMT is “Time Slipping Away” The passing of time day after day The external/outside world 3. BMT Requires Normalization, Comfort, Distraction, and Support Normalizing the experience Creating a sense of comfort in their hospital room Escape/distraction Social support of family, friends and hospital staff Note. BMT = bone marrow transplant.
I love food except now it’s not the same. I remember all the pumps, fluids, my central line. I remember rolling down that hallway when I got out, it still scares me a little. My experience with food was BAD. The chemo dragged me through the mud. Horrible memories—small room with a bunch of IV poles, scary, horrible, boring.
Some participants recognized the IV pole as ominous or even a “monster”—“I don’t like that pole. I don’t like how it beeps or the medicine that it gives me.”
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Figure 2. Treatments, chemo, hell, pure hell, torture.
BMT Has Physical Side Effects and Is Associated With Bad Memories. Most inpatients indicated a despairing view of struggling to get through the BMT process and took many photographs explicitly displaying the ramifications of their illness and treatment including their emesis, centralline site, various manifestations of mucousitis (a more common way to spell this is “mucositis”), urine, medication-induced edema, and blood-soaked gauze (see Figure 2). When BMT outpatients were shown photographs of the experiences of the participants, most said it brought back “painful and horrible memories,” and one patient did not want to finish the discussion. For example, one outpatient, stating how he made sense of the BMT experience said, “I died inside with all they did to me.”
BMT Is “Time Slipping Away” The patients and outpatients emphasized 2 aspects of living through the BMT experience: (a) the passing of time day after day and (b) the external/outside world. The Passing of Time Day After Day. Isolated and confined in the hospital with an unknown discharge, participants described “time dragging” and feeling “like the clock never moved.” One patient took a photo of a clock and said it represented the passing of time—“You forget what day it is and look at the clock, oh, it’s 4:00, but you don’t know the day. Time is just slipping away.” Another patient said, “I always look at the clock and think time goes so slowly. It makes me think of wanting to be out of here and with my family.” Patients indicated that “life is just passing me by out there” (Figure 3). The External/Outside World. The majority of the participants especially in the post-BMT phase of photographs
Figure 3. You forget what day it is and look at the clock, oh, it’s 4:00, but you don’t know the day. Time is just slipping away.
focused on the external/outside world from the perspective of their hospital room with many photos of windows including views of the hallway and the outside. They often reflected that the outside represented “freedom where they want to be.” One patient described his room as containing “blinds that even look like bars, like prison.” Patients who felt “quarantined” in their room had the desire to “look out the window to see the world.” Even further explaining the isolation from the outside world, one patient described living BMT as “a time when the outside world moves forward and [we] do not.” See Figure 4.
BMT Requires Normalization, Comfort, Distraction, and Support The patients and outpatients in the current study emphasized the importance of “getting through” and coping with BMT by using 4 primary strategies: (a) normalizing the experience, (b) creating a sense of comfort in their hospital room, (c) escape/distraction, and (d) social support of family, friends, and hospital staff. Normalizing the Experience. Across all patients, there were attempts to “normalize” the BMT experience. A
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Figure 4. Outside represents freedom, where I want to be. I focused into the sky more to symbolize that freedom. The blinds even look like bars, like prison. I’ve always had a sense of wanderlust and wonder what’s over the horizon. I feel like life is just passing by out there.
majority of patients would speak of naming their IV pole or creating an identity for the other medical devices, bringing them to life. Furthermore, many participants discussed being the same person but isolated in a room while experiencing physical changes and sickness. All the patients took self-portraits, and although many of these placed emphasis on their medical equipment (eg, feeding tube), most of the selfportraits were of smiling faces with accompanying descriptions of their personality and character. In spite of the often negative experience of BMT, patients expressed the need to have photos to demonstrate “that they were o.k.” to family members. Creating a Sense of Comfort in Their Hospital Room. Patients described coping with BMT by trying to make their rooms feel comfortable, more like home and reflective of the outside world—“We hung up decorations and moved the furniture around.” Patients took many photos of posters, greeting cards, and stuffed animals in their hospital rooms. Interestingly, patients often captured images of their stuffed animals and dolls positioned in bed in place of them (Figure 5). Photos were focused on “comfort” objects in the hospital rooms such as telephones—“Food is just a phone call away”— and stuffed animals from home—“The bear is named Hope and the dog is named Tosh after [my] dog at home. [I] sleep with both of these every night.” One patient took a photo of a stuffed kitten and noted that “Kitty has been there every step of the way and [I] like that.”
Figure 5. My teddy bear, dolls, and all of (my) stuffed animals help me cope while here in the hospital.
Escape/Distraction. Escape/distraction was a primary coping strategy for the BMT patients. This was exhibited by the abundance of photos of board games, video games, books, DVDs, television, toys, and computers. Patients indicated that they used all of these outlets for “something to do” and to prevent boredom. For instance, patients describing their photos said, “I watch wrestling all the time, that’s what I get to do” and “I like to play my games, it gives me something to do.” Social Support of Family, Friends, and Hospital Staff. Participants described the absolute importance of social support provided by family, friends, and hospital staff. BMT patients took many photos of various family members, friends, and hospital staff, or objects that connected them to family members (ie, laptop, cards, and gifts) and described how relationships offered social support during the BMT process. Many quotes reflected the meaningful relationships that aided patients in the coping with BMT: My Dad being silly—it helps me to cope. The laptop is the first time we could talk with Granny every day and it was the first time I used Skype. Talking with family via Skype makes things easier here. This is my favorite nurse. My mom always works so hard. She works 2 jobs even though we’re here. She’s a good mom. I miss my dad and brother. My brother is so funny, he makes me laugh, and we have so many inside jokes. These are the ladies at radiation. They were so nice to me and helped me get through the 4 days.
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Figure 6. My tree of hope from a good friend—I like that it has nice words on it. It helps me think about getting better.
One patient took a picture of a tree of hope given to her by a good friend—“I like that it has nice words on it. It helps me think about getting better.” See Figure 6.
Impact of Photovoice on BMT Clinical Staff and Implications for Practice The clinical staff working with BMT patients discussed the impact of the photovoice project on their future practice and interactions with patients. The staff emphasized that the photovoice project affected them deeply, noting that it made them “more mindful of the emotions and journey through transplant.” Staff said they, “tend to forget the patient experience,” but the photos reminded them of what the patients and families go through. One social worker stated, “It has provided me a new depth of understanding, maybe a bit of intimacy not yet experienced in the therapeutic relationship so far.” A BMT nurse said, “I would like to be more playful with my patients,” and “[the photos] tell staff to remember what the patient is giving up—adolescence.” In addition, staff said there were shifts in how the medical team may approach treatment, for example, one nurse practitioner stated, “I would be more aware of when I make them NPO (unable to eat).” A physician reflected, “I would try to be mindful of patient’s choices/feelings in exam.” In relation to the patient’s previously discussed loss of privacy, a nurse practitioner said, “I would try to respect space, knock and ask before entering,” and “I would remember how miserable their life at the hospital can be.”
Discussion In the current study, photovoice served to illuminate the pediatric BMT experience from patients’ perspectives.
Photovoice methodology was modified from the original protocol in order to accommodate the isolated nature of the BMT hospital setting, and yet offer an opportunity for BMT patients to creatively express a day in their lives during the inpatient BMT process. Participants characterized the physical aspects of the BMT process as painful and difficult with a focus on their external versus internal world. External fixtures photographed by participants appeared to represent what was “being done” to them and seemed to emphasize their physical, external experience through their treatment. Perhaps identifying the objects offered a sense of control that they had lost within the BMT process, allowing them to recapture some power (Patenaude, 1990). The majority of the inpatient BMT participants did not directly and explicitly state how they felt about going through the BMT process (e.g., stating that they were scared or sad). However, with the exception of a few participants, the photographs served as an expressive outlet allowing the participants to indirectly express concerns and emotions regarding BMT. Participants exhibited a strong sense of self, even through the worst of their treatment associated with BMT. Most took happy, joyful self-portraits, sometimes even noting those photographs as their favorite. They also documented themselves playing with staff, family, participating in therapies, learning with the teacher, and other activities. It was as if they wanted to “tell their story” to others to demonstrate that they were “o.k.” During the discussions with the social workers, patients displayed a strong resiliency and never asked “why” they were in the hospital. Perhaps this suggests that every effort should be made to maintain a structure and create a sense of normalcy for the patients during the prolonged hospitalization. Although most patients experience periods of significant illness during a BMT, the photos suggest that helping patients to maintain a strong sense of self and activity level despite illness is important to managing the BMT process. When patients were asked to take photos for the second time post-BMT, the emergent theme shifted from inside the room to outside. Not surprisingly, there was more of a focus on leaving the hospital and moving toward the next phase of treatment. This was exhibited by photographs looking outward, outside the window, or beyond the door. During the photo discussions, participants spoke of goals and being prepared for and excited about the transition. Although previous literature emphasizes patient fears associated with discharge from the hospital after BMT, such as loss of a readily available medical team, fear of social reintegration, or concerns regarding relationships (Baker, Zabora, Polland, & Wingard, 1999; Lee et al., 2005; Packman, Weber, Wallace, & Bugescu, 2010), patients in the current project embraced the transition out of the hospital. Discussions with the outpatient participants gave additional insight into the psychological journey through
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Breitwieser and Vaughn BMT. Some outpatients did not want to participate in the discussions about the inpatient photos. For instance, one individual said he “would rather not” and another reluctantly agreed to evaluate the photos. The impact of reliving memories of their personal BMT experience was mostly difficult, with only a couple of participants detailing any positive effects of the event. Lee et al. (2005) reported that elevated levels of anxiety and/or depression pretransplant may lead to posttransplant psychosocial distress. Perhaps early therapeutic interventions offered pretransplant may decrease the maladjustment and distress experienced posttransplant (Packman et al., 2010). Regardless, it is crucial that BMT patients, both inpatient and outpatient, have access to psychosocial support services throughout the BMT experience. We also wanted to determine how photovoice could be utilized within a pediatric BMT unit. As a whole, participants during the inpatient phase were excited to participate and share their day, often saying it was “all about them.” Taking photographs made them feel special and gave them a sense of control over their environment. The photovoice process also worked well with younger participants allowing them to share their experience through their photos versus simply responding to questions. Like other photovoice projects, the photos provided a nonthreatening way for patients to “tell their story” and reflect on their BMT experience (Yi & Zebrack, 2010). Due to the strict isolation and inability to speak with other transplant patients, photovoice provided an emotional outlet usually not afforded to them—one in which they were able to have a sense of control in a difficult environment rather than the environment having power over them. Having a sense of control during lengthy hospital stays with prolonged illness can contribute to quicker recovery times, a greater sense of well-being, a reduction in helplessness, and a counteraction of vulnerable feelings for patients (Bohachick, Taylor, Sereika, Reeder, & Anton, 2002; Greenfield, Kaplan, & Ware, 1985; Klein & Winkelstein, 1996). An unanticipated outcome of the study involved the reaction of the medical team/caregivers. Social workers continually noted the strengthening of the therapeutic relationship between themselves and the participants. The patients were able to discuss their experience in a nonthreatening manner, often opening up to extended family members as well. This allowed for a deeper therapeutic relationship that sustained itself through the duration of their interaction. In addition, nurses, doctors, nurse practitioners, and dietitians consistently noted the lasting impression that seeing the photographs had on their practice. They repeatedly reported that viewing the photographs gave them a deeper insight into the patients’ experiences and would alter how they approached and interacted with the patients. Seeing the photos allowed staff to take a walk in the shoes of the patients and seemed to sensitize staff to the day-to-day experience of their patients. Photovoice and
other visual and narrative methods can enhance patientprovider communication, engage patients in their own healing, and humanize the BMT experience for staff so they may approach the patients with increased understanding and compassion (Lorenz & Chilingerian, 2011). There were limitations in the current study. The younger children did not always have a mastery of the camera, creating periodic frustration or blurry photos. Other patients were sometimes feeling too ill to take photos or discuss them within the time frame allotted. In addition, when patients were able to speak about their photos, privacy was at times an issue with staff members entering and exiting the room to provide care. Finally, the participating patients were not able to discuss their photographs with other participants. Despite the limitations, the findings of this study will assist health care providers in responding more effectively to children and young adults who are in the process of having a BMT particularly regarding their mental health and well-being. The experience of having a pediatric BMT is contextual, meaning that patients experience more than just the transplant itself. It is essential that health care providers understand BMT patients, including their strengths, challenges, and resiliency. Photovoice allowed the BMT patients themselves to more deeply reflect and report on their BMT experience versus studies where “proxy reporters” (ie, parents, physicians, teachers) report on what children are thinking and feeling (Riley, 2004). Conducting a study that concentrates on the voices and needs of BMT patients is the first step to creating sound and successful supplemental programs and interventions specifically suited to pediatric BMT patients during inpatient hospital stays. The last step of the photovoice process typically involves an action phase where participants organize and present their photos at a public exhibition to share findings with a broader community (Catalani & Minkler, 2010). In the next round of photovoice with BMT patients, we intend to explore methods by which patients will be able to dialogue and discuss photos with one another— either through online computer programs or social media. We also want to discuss with participating patients how and if they would like to display their photos publicly. Acknowledgments We want to express our gratitude to the bone marrow transplant patients, outpatients, and staff who were willing to share openly and support the study. Special thanks to Stella Davies, MD, Maureen Donnelly, LISW-S, Nancy Delaney, LSW, Sharon Penko, LISW-S, and Elizabeth Smith, LISW-Sfor their assistance with the project and to the National Cancer Assistance Foundation for their donation of cameras and supplies.
Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
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Funding The author(s) received no financial support for the research, authorship, and/or publication of this article.
References Baker, F., Zabora, J., Polland, A., & Wingard, J. (1999). Reintegration after bone marrow transplantation. Cancer Practice, 7, 190-197. Bohachick, P., Taylor, M. V., Sereika, S., Reeder, S., & Anton, B. B. (2002). Social support, personal control, and psychosocial recovery following heart transplantation. Clinical Nursing Research, 11(1), 34-51. Buchsel, P. C., Leum, E. W., & Randolph, S. R. (1996). Delayed complications of bone marrow transplantation: An update. Oncology Nursing Forum, 23, 1267-1291. Campos, M., & Olaya, A. (2011). Anxiety in bone marrow transplant patients. Pediatric Research, 70(Suppl. 5), 308-308. Catalani, C., & Minkler, M. (2010). Photovoice: A review of the literature in health and public health. Health Education & Behavior, 37, 424-451. Creswell, J. W. (2013). Qualitative inquiry & research design: Choosing among five approaches (3rd ed.). Thousand Oaks, CA: Sage. Drew, S. E., Duncan, R. E., & Sawyer, S. M. (2010). Visual storytelling: A beneficial but challenging method for health research with young people. Qualitative Health Research, 20, 1677-1688. Felder-Puig, R., di Gallo, A., Waldenmair, M., Norden, P., Winter, A., Gadner, H., & Topf, R. (2006). Health-related quality of life of pediatric patients receiving allogeneic stem cell or bone marrow transplantation: Results of a longitudinal, multi-center study. Bone Marrow Transplant, 38, 119-126. Greenfield, S., Kaplan, S., & Ware, J. E., Jr. (1985). Expanding patient involvement in care: Effects on patient outcomes. Annals of Internal Medicine, 102, 520-528. Hergenrather, K. C., Rhodes, S. D., Cowan, C. A., Bardhoshi, G., & Pula, S. (2009). Photovoice as community-based participatory research: A qualitative review. American Journal of Health Behavior, 33, 686-698. Klein, S. A., & Winkelstein, M. L. (1996). Enhancing pediatric health care with music. Journal of Pediatric Health Care, 10(2), 74-81. Lee, S. J., Loberiza, F. R., Antin, J. H., Kirkpatrick, T., Prokop, L., Alyea, E. P., . . .Soiffer, R. J. (2005). Routine screening for psychosocial distress following hematopoietic stem cell transplantation. Bone Marrow Transplantation, 35(1), 77-83. Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Beverly Hills, CA: Sage. Lorenz, L. S., & Chilingerian, J. A. (2011). Using visual and narrative methods to achieve fair process in clinical care. Journal of Visualized Experiments, 48, e2342. McConville, B. J., Steichen-Asch, P., Harris, R., Neudorf, S., Sambrano, J., Lampkin, B., . . .Woodman, D. (1990). Pediatric bone marrow transplants: Psychological aspects. Canadian Journal of Psychiatry. Revue Canadienne de Psychiatrie, 35, 769-775.
Molassiotis, A., Van Den Akker, O. B. A., MiIigan, D. W., Goldman, J. M., & Boughton, B. J. (1996). Psychological adaptation and symptom distress in bone marrow transplant recipients. Psycho-Oncology, 5(1), 9-22. Packman, W. L., Crittenden, M. R., Fischer, J. B. R., Schaeffer, E., Bongar, B., & Cowan, M. J. (1998). Siblings’ perceptions of the bone marrow transplantation process. Journal of Psychosocial Oncology, 15(3-4), 81-105. Packman, W. L., Weber, S., Wallace, J., & Bugescu, N. (2010). Psychological effects of hematopoietic SCT on pediatric patients, siblings and parents: A review. Bone Marrow Transplantation, 45, 1134-1146. Parsons, S. K., Barlow, S. E., Levy, S. L., Supran, S. E., & Kaplan, S. H. (1999). Health-related quality of life in pediatric bone marrow transplant survivors: According to whom? International Journal of Cancer, 83(Suppl. 12), 46-51. Patenaude, A. F. (1990). Psychological impact of bone marrow transplantation: Current perspectives. Yale Journal of Biology and Medicine, 63, 515-519. Radley, A., & Taylor, D. (2003). Remembering one’s stay in hospital: A study in photography, recovery and forgetting. Health, 7, 129-159. Riley, A. W. (2004). Evidence that school-age children can self-report on their health. Ambulatory Pediatrics, 4, 371-376. Strack, R. W., Magill, C., & McDonagh, K. (2004). Engaging youth through photovoice. Health Promotion Practice, 5, 49-58. Streisand, R., Rodrigue, J. R., Houck, C., Graham-Pole, J., & Berlant, N. (2000). Parents of children undergoing bone marrow transplantation: Documenting stress and piloting a psychological intervention program. Journal of Pediatric Psychology, 25, 331-337. Vannatta, K., Zeller, M., Noll, R. B., & Koontz, K. (1998). Social functioning of children surviving bone marrow transplantation. Journal of Pediatric Psychology, 23, 169-178. Wang, C., & Burris, M. A. (1997). Photovoice: Concept, methodology, and use for participatory needs assessment. Health Education & Behavior, 24, 369-387. Wang, C., Yi, W., Tao, Z., & Carovano, K. (1999). Photovoice: A participatory action research strategy applied to women’s health. Journal of Women’s Health, 8, 185-192. Yi, J., & Zebrack, B. (2010). Self-portraits of families with young adult cancer survivors: Using photovoice. Journal of Psychosocial Oncology, 28, 219-243.
Author Biographies Carrie L. Breitwieser, LISW-S, ACHP-SW, is a bone marrow transplant social worker in the Cancer and Blood Diseases Institute at Cincinnati Children’s Hospital Medical Center. Lisa M. Vaughn, PhD, is a professor in the Pediatrics Department at Cincinnati Children’s Hospital Medical Center/ University of Cincinnati College of Medicine. She is a social psychologist and medical educator and has a joint appointment with University of Cincinnati, College of Education, Criminal Justice, and Human Services.
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research-article2014
JPOXXX10.1177/1043454214531334Journal of Pediatric Oncology NursingBreitwieser and Vaughn
Article
“A Day in My life” Photography Project: The Silent Voice of Pediatric Bone Marrow Transplant Patients
Journal of Pediatric Oncology Nursing 2014, Vol. 31(5) 284–292 © 2014 by Association of Pediatric Hematology/Oncology Nurses Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1043454214531334 jpo.sagepub.com
Carrie L. Breitwieser, LISW-S, ACHP-SW1, and Lisa M. Vaughn, PhD1
Abstract A photovoice project was conducted with pediatric bone marrow transplant (BMT) patients to examine their coping skills and interpretation of their experience during a BMT, especially when hospitalized. We also wanted to determine how photovoice could be used within a pediatric BMT unit. Sixteen children (ages 4-14) and 2 young adults (ages 22 and 25) from a pediatric BMT unit participated in the project. Six BMT outpatients participated in the data analysis and evaluation phase. Fourteen clinical staff evaluated the impact of the project on their practice. Three primary themes emerged from the pre- and post-BMT photos, accompanying detailed notes, and BMT outpatient analysis of the photos: (a) BMT is “torture,” (b) BMT is “time slipping away,” and (c) BMT requires normalization, comfort, distraction, and support. BMT patients and staff concluded that photovoice helped express and release emotions regarding the challenges of BMT. BMT staff noted that the results of this project reminded them of the importance of being patient-centered and mindful of patient experience and the therapeutic relationship. Keywords pediatric bone marrow transplant, photovoice, qualitative research
Introduction Bone marrow transplant (BMT) is a complex procedure to replace unhealthy bone marrow with healthy bone marrow stem cells. Although often a life-saving option, pediatric BMT can be an intense and isolating medical therapy (Campos & Olaya, 2011). BMT involves a lengthy inpatient hospitalization, commonly after prolonged prior therapy that sometimes involves years of chemotherapy for children with relapsed malignancy. During the transplant procedure, patients are hospitalized for 6 to 8 weeks on average, followed by at least 6 to 8 more weeks of outpatient follow-up. After the initial inpatient stay, frequent rehospitalizations are common, and ongoing outpatient follow-up is essential. The posttransplant period is unpredictable because of potential complications such as chronic graft-versus-host disease, pulmonary and endocrine complications, and relapse (Buchsel, Leum, & Randolph, 1996). While an average initial hospitalization might be 6 weeks, outliers with severe complications may be hospitalized for many months or even a year. Significant mortality may occur in the first year after transplant, with risk of death depending on the diagnosis for which the transplant was performed (Patenaude, 1990).
During the lengthy, and often frightening BMT procedure, patients experience isolation from the outside world, with only a limited number of caregivers permitted to visit (Molassiotis, Van Den Akker, MiIigan, Goldman, & Boughton, 1996). For the majority of children and adolescents who experience a BMT, quality of life and psychosocial and physical functioning are often greatly impaired (Vannatta, Zeller, Noll, & Koontz, 1998). Specifically, youth who experience a BMT are likely to have a lower health-related quality of life (Felder-Puig et al., 2006; Parsons, Barlow, Levy, Supran, & Kaplan, 1999) and experience depressive, anxiety, and stress symptoms (Campos & Olaya, 2011; McConville et al., 1990; Molassiotis et al., 1996); lack of school attendance and decreased contact with peers (Vannatta et al., 1998); and additional family stress due to the BMT itself (Packman et al., 1998; Streisand, Rodrigue, Houck, Graham-Pole, & Berlant, 2000). 1
Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA
Corresponding Author: Carrie L. Breitwieser, Cancer and Blood Diseases Institute, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH 45229, USA. Email: [email protected]
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Breitwieser and Vaughn The majority of studies about the psychosocial aspects of pediatric BMT have utilized questionnaires completed by proxy reporters (ie, parents, teachers, clinical staff) and have tended to neglect how the child thinks and feels about the BMT process (Parsons et al., 1999). The need to address the patient’s psychological well-being and coping strategies becomes a priority during such a prolonged inpatient stay; finding creative and participatory ways to do so can be challenging. There is research to suggest that participatory and visual storytelling research strategies can be effectively used with chronic illness populations to illuminate youth perceptions, empower participants to discuss relevant issues, and promote health advocacy (Drew, Duncan, & Sawyer, 2010). One such visual method, photovoice, has been found to be a beneficial patient-centered method and has been used with patients who have chronic illnesses, cancer survivors, and those who have been hospitalized (Radley & Taylor, 2003; Yi & Zebrack, 2010). Photovoice is widely used in community-based participatory research and educational action research (Catalani & Minkler, 2010; Wang & Burris, 1997; Wang, Yi, Tao, & Carovano, 1999). In photovoice methodology, participants are given cameras to document aspects of their life (in the current case, experiences with BMT) and then they share and engage in a critical dialogue about the photos in order to capture information about issues of importance to them (Hergenrather, Rhodes, Cowan, Bardhoshi, & Pula, 2009). Using photos in this manner shifts the power to the participants to tell the story of their life from their own perspective and in their own voice. The photos provide a creative and effective way to discuss often difficult and deeply felt issues (Catalani & Minkler, 2010). Recent photovoice studies suggest that children and adults who participate in this type of project are more likely to take part in healthpromotion behaviors (Catalani & Minkler, 2010; Strack, Magill, & McDonagh, 2004). Hence, photovoice can be an effective strategy for engaging pediatric BMT patients about their hospitalization and treatment while understanding the impact of BMT from the patient perspective. Through a modified photovoice methodology, the purpose of the current study was to examine children and young adults’ coping skills and interpretation of their experience during a BMT, particularly while hospitalized. We also wanted to determine how photovoice could be utilized within a pediatric BMT unit. To our knowledge, this study is the first of its kind—photovoice to understand the BMT experience from the patients’ perspectives.
Methods Participants and Setting Children (ages 4 and older) and young adults were recruited through BMT social workers on the BMT
pediatric inpatient unit. BMT outpatients and clinical staff were also recruited to participate in the data analysis phase and to evaluate the project. The study was conducted in a large, urban, tertiary pediatric bone marrow transplant unit in a free-standing children’s hospital. At the time of the study, our BMT unit had 24 inpatient beds, it currently has a total of 36 inpatient beds. In 2012, 98 transplants occurred, and in 2013 there were 92 transplants. Children and young adults meeting 3 inclusion criteria were approached to be in the study: (a) age 4 and older, (b) not too ill to participate as determined by the patients and/or caregivers themselves, and (c) able to obtain parental consent. BMT outpatients and clinical staff were recruited to assist in the evaluation of the project.
Procedure Approval was received from the institutional review board before starting the study. Patients or parents/guardians of children under age 18 were approached by a member of the research team and offered informational sheets, one for the parent and one for the patient that described the project in detail. The photovoice project was then verbally explained to parents/caregivers. They were given a consent form that outlined the study and the risks and benefits of participating and asked to it, giving permission for their child to participate in the study. If patients were over age 18, they were approached in the same manner. If the parents agreed, then the project was explained to the patients, who were asked to give written assent to participate. BMT outpatients and clinical staff received information about the study and gave verbal consent to participate (waiver of written consent approved by institutional review board).
Data Collection Brief demographic information (eg, birth date of the patient, age, diagnosis, race/ethnicity, and date of BMT) was gathered from participants’ medical records at the beginning of the project to describe the sample. Participants, BMT outpatients, and clinical staff participated in either individual interviews or focus groups regarding their perceptions of the project and to provide feedback about the photographs that participants took. Patients were given a basic digital camera, and they were trained on how to chronicle “A Day in My Life,” and use of the camera. For 24 hours the patients had the opportunity to take photos of anything they viewed as part of their day and document thoughts about each photo in a journal. Within a week, the printed photo “thumbnails” and their corresponding journals were reviewed in person with a social worker eliciting thoughts about their
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photos. To begin the discussion, most patients chose their favorite photographs but were not restricted in the number of photos they wished to discuss. During the discussions, patients were asked to think about (a) why they took the picture, (b) what others might see in the photo, (c) how they were feeling when they took the photo, and (d) next steps including what they hope will happen or what might happen next. These questions were loosely based on the SHOWeD questions often used in photovoice: What do you SEE in this photograph? What is really HAPPENING in this photograph? How does this relate to OUR lives? WHY does this issue exist? How can we become EMPOWERED by this, and What can we DO about it? (Wang et al., 1999) The same approach was used with younger children in the study, and they were able to successfully participate. Patients were given the opportunity to withhold any photograph they did not want shared with others. Unless there were unforeseen circumstances (i.e., severe illness, death, early discharge), all enrolled patients participated in data collection at 2 time points: (a) pre-BMT (time of admission up to the day of infusion of cells) and (b) postBMT (30-60 days after the BMT, depending on patient’s length of stay). At the conclusion of the project, each participating patient was given either a CD containing their photos or selected prints of their photos. They were also given the digital camera to keep. After data collection at pre- and post-BMT with inpatients, BMT outpatients participated in individual interviews with social workers to review the inpatient participants’ photographs and discuss the meaning of the photos based on their experience during BMT. In addition, BMT clinical staff participated in 1 of 2 focus groups regarding the photovoice process.
data sources (i.e., gathering data from inpatients, outpatients, and staff; Creswell, 2013). During interviews and focus groups with BMT outpatients and clinical staff, the discussion centered on whether the themes captured the full BMT experience, what they saw in the photos, what the meaning of the photos were to them, and whether or not they had similar or different experiences with BMT. BMT outpatients who had distance from the inpatient experience were able to examine the inpatient photos and reflect on their BMT experience, perhaps with greater insight than the inpatients in the midst of treatment. Clinical staff also discussed the impact of the photovoice study on their practice. The content was documented by the social worker taking detailed notes during the conversations.
Final Sample Sixteen children (ages 4-14) and 2 young adults (ages 22 and 25) from a pediatric BMT unit participated in the preBMT phase of the project, and 12 of the 18 participated in the post-BMT phase; 6 were unable to participate postBMT due to severe illness or death. Participants were mostly Caucasian (83%), 44% female and 56% male, and from a range of socioeconomic backgrounds, reflecting the typical BMT demographics at our hospital. Six BMT outpatients (50% female, 50% male, ages 11-32) participated in the data analysis and evaluation phase. See Table 1 for more detailed information about the demographics of the inpatients and outpatients. Fourteen clinical staff (5 registered nurses, 2 nurse practitioners, 1 physician, 1 dietician, 2 pharmacists, and 3 social workers) participated in 1 of 2 focus groups.
Results
Data Analysis Photovoice discussions often happen in a group setting with all participants present. However, because BMT patients were isolated in their hospital rooms, they could not participate in group discussions. Therefore, one of the social work members of the research team documented through handwritten detailed notes the content of the individual photo discussions. Two members of the research team (CB and LV) analyzed the discussion notes and accompanying photographs across patients for emergent themes that reflected the participants’ experience while in the BMT unit. According to standard qualitative research procedure, all of the data were organized into broad conceptual categories and verified first among project investigators and then among BMT outpatients and clinical staff for clarification, consensus, and credibility of important themes (Lincoln & Guba, 1985). In an effort to establish credibility, we utilized triangulation of
Three primary themes emerged from the pre- and postBMT photos, accompanying detailed notes, and BMT outpatient analysis of the photos: (a) BMT is “torture,” (b) BMT is “time slipping away,” and (c) BMT requires normalization, comfort, distraction, and support. Each primary theme was composed of 2 to 4 subthemes. See Table 2 for an outline of all themes.
BMT Is “Torture” In general, the BMT patients and outpatients characterized the process of BMT as extremely painful both emotionally and physically—a process that is “pure hell, torture” and “not the best time of my life.” Two subthemes clarified the patients’ perceptions of the overall process of BMT: (a) BMT is restrictive and constraining and (b) BMT has physical side effects and is associated with bad memories.
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Breitwieser and Vaughn Table 1. Demographic Information. Participants
n (%)
BMT inpatients Age (years) 4-6 7-9 10-12 13-15 16-18 19-21 22-25 Ethnicity Caucasian African American Latino Other (biracial) Gender Female Male Participation Pre-BMT Post-BMT BMT outpatients Age (years) 11-14 15-24 25-32 Ethnicity Caucasian African American Latino Other Gender Female Male
5 (28%) 5 (28%) 3 (17%) 3 (17%) 0 (0%) 0 (0%) 2 (11%) 15 (83%) 0 (0%) 2 (11%) 1 (6%) 8 (44%) 10 (56%) 18 (100%) 10 (56%)
3 (50%) 1 (17%) 2 (33%)
Figure 1. My IV pole, named “Brutus.” I named it because it’s always with me. The pole looks like a robot.
5 (83%) 0 (0%) 1 (17%) 0 (0%)
BMT Is Restrictive and Constraining. BMT patients and outpatients described a restrictive and constraining environment with many rules and regulations. Patients took photographs that showed a world of poles that are “always with you,” central lines, medicine, chemotherapy, treatments, pumps, pain, no privacy, isolation, restrictive food experiences, tubes, not wanting to eat, and sickness. See Figure 1.
3 (50%) 3 (50%)
Note. BMT = bone marrow transplant.
I am a guy that likes my privacy and here there is none. Table 2. Primary Themes and Subthemes. 1. BMT is “Torture” BMT is restrictive and constraining BMT has physical side effects and is associated with bad memories 2. BMT is “Time Slipping Away” The passing of time day after day The external/outside world 3. BMT Requires Normalization, Comfort, Distraction, and Support Normalizing the experience Creating a sense of comfort in their hospital room Escape/distraction Social support of family, friends and hospital staff Note. BMT = bone marrow transplant.
I love food except now it’s not the same. I remember all the pumps, fluids, my central line. I remember rolling down that hallway when I got out, it still scares me a little. My experience with food was BAD. The chemo dragged me through the mud. Horrible memories—small room with a bunch of IV poles, scary, horrible, boring.
Some participants recognized the IV pole as ominous or even a “monster”—“I don’t like that pole. I don’t like how it beeps or the medicine that it gives me.”
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Figure 2. Treatments, chemo, hell, pure hell, torture.
BMT Has Physical Side Effects and Is Associated With Bad Memories. Most inpatients indicated a despairing view of struggling to get through the BMT process and took many photographs explicitly displaying the ramifications of their illness and treatment including their emesis, centralline site, various manifestations of mucousitis (a more common way to spell this is “mucositis”), urine, medication-induced edema, and blood-soaked gauze (see Figure 2). When BMT outpatients were shown photographs of the experiences of the participants, most said it brought back “painful and horrible memories,” and one patient did not want to finish the discussion. For example, one outpatient, stating how he made sense of the BMT experience said, “I died inside with all they did to me.”
BMT Is “Time Slipping Away” The patients and outpatients emphasized 2 aspects of living through the BMT experience: (a) the passing of time day after day and (b) the external/outside world. The Passing of Time Day After Day. Isolated and confined in the hospital with an unknown discharge, participants described “time dragging” and feeling “like the clock never moved.” One patient took a photo of a clock and said it represented the passing of time—“You forget what day it is and look at the clock, oh, it’s 4:00, but you don’t know the day. Time is just slipping away.” Another patient said, “I always look at the clock and think time goes so slowly. It makes me think of wanting to be out of here and with my family.” Patients indicated that “life is just passing me by out there” (Figure 3). The External/Outside World. The majority of the participants especially in the post-BMT phase of photographs
Figure 3. You forget what day it is and look at the clock, oh, it’s 4:00, but you don’t know the day. Time is just slipping away.
focused on the external/outside world from the perspective of their hospital room with many photos of windows including views of the hallway and the outside. They often reflected that the outside represented “freedom where they want to be.” One patient described his room as containing “blinds that even look like bars, like prison.” Patients who felt “quarantined” in their room had the desire to “look out the window to see the world.” Even further explaining the isolation from the outside world, one patient described living BMT as “a time when the outside world moves forward and [we] do not.” See Figure 4.
BMT Requires Normalization, Comfort, Distraction, and Support The patients and outpatients in the current study emphasized the importance of “getting through” and coping with BMT by using 4 primary strategies: (a) normalizing the experience, (b) creating a sense of comfort in their hospital room, (c) escape/distraction, and (d) social support of family, friends, and hospital staff. Normalizing the Experience. Across all patients, there were attempts to “normalize” the BMT experience. A
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Figure 4. Outside represents freedom, where I want to be. I focused into the sky more to symbolize that freedom. The blinds even look like bars, like prison. I’ve always had a sense of wanderlust and wonder what’s over the horizon. I feel like life is just passing by out there.
majority of patients would speak of naming their IV pole or creating an identity for the other medical devices, bringing them to life. Furthermore, many participants discussed being the same person but isolated in a room while experiencing physical changes and sickness. All the patients took self-portraits, and although many of these placed emphasis on their medical equipment (eg, feeding tube), most of the selfportraits were of smiling faces with accompanying descriptions of their personality and character. In spite of the often negative experience of BMT, patients expressed the need to have photos to demonstrate “that they were o.k.” to family members. Creating a Sense of Comfort in Their Hospital Room. Patients described coping with BMT by trying to make their rooms feel comfortable, more like home and reflective of the outside world—“We hung up decorations and moved the furniture around.” Patients took many photos of posters, greeting cards, and stuffed animals in their hospital rooms. Interestingly, patients often captured images of their stuffed animals and dolls positioned in bed in place of them (Figure 5). Photos were focused on “comfort” objects in the hospital rooms such as telephones—“Food is just a phone call away”— and stuffed animals from home—“The bear is named Hope and the dog is named Tosh after [my] dog at home. [I] sleep with both of these every night.” One patient took a photo of a stuffed kitten and noted that “Kitty has been there every step of the way and [I] like that.”
Figure 5. My teddy bear, dolls, and all of (my) stuffed animals help me cope while here in the hospital.
Escape/Distraction. Escape/distraction was a primary coping strategy for the BMT patients. This was exhibited by the abundance of photos of board games, video games, books, DVDs, television, toys, and computers. Patients indicated that they used all of these outlets for “something to do” and to prevent boredom. For instance, patients describing their photos said, “I watch wrestling all the time, that’s what I get to do” and “I like to play my games, it gives me something to do.” Social Support of Family, Friends, and Hospital Staff. Participants described the absolute importance of social support provided by family, friends, and hospital staff. BMT patients took many photos of various family members, friends, and hospital staff, or objects that connected them to family members (ie, laptop, cards, and gifts) and described how relationships offered social support during the BMT process. Many quotes reflected the meaningful relationships that aided patients in the coping with BMT: My Dad being silly—it helps me to cope. The laptop is the first time we could talk with Granny every day and it was the first time I used Skype. Talking with family via Skype makes things easier here. This is my favorite nurse. My mom always works so hard. She works 2 jobs even though we’re here. She’s a good mom. I miss my dad and brother. My brother is so funny, he makes me laugh, and we have so many inside jokes. These are the ladies at radiation. They were so nice to me and helped me get through the 4 days.
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Figure 6. My tree of hope from a good friend—I like that it has nice words on it. It helps me think about getting better.
One patient took a picture of a tree of hope given to her by a good friend—“I like that it has nice words on it. It helps me think about getting better.” See Figure 6.
Impact of Photovoice on BMT Clinical Staff and Implications for Practice The clinical staff working with BMT patients discussed the impact of the photovoice project on their future practice and interactions with patients. The staff emphasized that the photovoice project affected them deeply, noting that it made them “more mindful of the emotions and journey through transplant.” Staff said they, “tend to forget the patient experience,” but the photos reminded them of what the patients and families go through. One social worker stated, “It has provided me a new depth of understanding, maybe a bit of intimacy not yet experienced in the therapeutic relationship so far.” A BMT nurse said, “I would like to be more playful with my patients,” and “[the photos] tell staff to remember what the patient is giving up—adolescence.” In addition, staff said there were shifts in how the medical team may approach treatment, for example, one nurse practitioner stated, “I would be more aware of when I make them NPO (unable to eat).” A physician reflected, “I would try to be mindful of patient’s choices/feelings in exam.” In relation to the patient’s previously discussed loss of privacy, a nurse practitioner said, “I would try to respect space, knock and ask before entering,” and “I would remember how miserable their life at the hospital can be.”
Discussion In the current study, photovoice served to illuminate the pediatric BMT experience from patients’ perspectives.
Photovoice methodology was modified from the original protocol in order to accommodate the isolated nature of the BMT hospital setting, and yet offer an opportunity for BMT patients to creatively express a day in their lives during the inpatient BMT process. Participants characterized the physical aspects of the BMT process as painful and difficult with a focus on their external versus internal world. External fixtures photographed by participants appeared to represent what was “being done” to them and seemed to emphasize their physical, external experience through their treatment. Perhaps identifying the objects offered a sense of control that they had lost within the BMT process, allowing them to recapture some power (Patenaude, 1990). The majority of the inpatient BMT participants did not directly and explicitly state how they felt about going through the BMT process (e.g., stating that they were scared or sad). However, with the exception of a few participants, the photographs served as an expressive outlet allowing the participants to indirectly express concerns and emotions regarding BMT. Participants exhibited a strong sense of self, even through the worst of their treatment associated with BMT. Most took happy, joyful self-portraits, sometimes even noting those photographs as their favorite. They also documented themselves playing with staff, family, participating in therapies, learning with the teacher, and other activities. It was as if they wanted to “tell their story” to others to demonstrate that they were “o.k.” During the discussions with the social workers, patients displayed a strong resiliency and never asked “why” they were in the hospital. Perhaps this suggests that every effort should be made to maintain a structure and create a sense of normalcy for the patients during the prolonged hospitalization. Although most patients experience periods of significant illness during a BMT, the photos suggest that helping patients to maintain a strong sense of self and activity level despite illness is important to managing the BMT process. When patients were asked to take photos for the second time post-BMT, the emergent theme shifted from inside the room to outside. Not surprisingly, there was more of a focus on leaving the hospital and moving toward the next phase of treatment. This was exhibited by photographs looking outward, outside the window, or beyond the door. During the photo discussions, participants spoke of goals and being prepared for and excited about the transition. Although previous literature emphasizes patient fears associated with discharge from the hospital after BMT, such as loss of a readily available medical team, fear of social reintegration, or concerns regarding relationships (Baker, Zabora, Polland, & Wingard, 1999; Lee et al., 2005; Packman, Weber, Wallace, & Bugescu, 2010), patients in the current project embraced the transition out of the hospital. Discussions with the outpatient participants gave additional insight into the psychological journey through
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Breitwieser and Vaughn BMT. Some outpatients did not want to participate in the discussions about the inpatient photos. For instance, one individual said he “would rather not” and another reluctantly agreed to evaluate the photos. The impact of reliving memories of their personal BMT experience was mostly difficult, with only a couple of participants detailing any positive effects of the event. Lee et al. (2005) reported that elevated levels of anxiety and/or depression pretransplant may lead to posttransplant psychosocial distress. Perhaps early therapeutic interventions offered pretransplant may decrease the maladjustment and distress experienced posttransplant (Packman et al., 2010). Regardless, it is crucial that BMT patients, both inpatient and outpatient, have access to psychosocial support services throughout the BMT experience. We also wanted to determine how photovoice could be utilized within a pediatric BMT unit. As a whole, participants during the inpatient phase were excited to participate and share their day, often saying it was “all about them.” Taking photographs made them feel special and gave them a sense of control over their environment. The photovoice process also worked well with younger participants allowing them to share their experience through their photos versus simply responding to questions. Like other photovoice projects, the photos provided a nonthreatening way for patients to “tell their story” and reflect on their BMT experience (Yi & Zebrack, 2010). Due to the strict isolation and inability to speak with other transplant patients, photovoice provided an emotional outlet usually not afforded to them—one in which they were able to have a sense of control in a difficult environment rather than the environment having power over them. Having a sense of control during lengthy hospital stays with prolonged illness can contribute to quicker recovery times, a greater sense of well-being, a reduction in helplessness, and a counteraction of vulnerable feelings for patients (Bohachick, Taylor, Sereika, Reeder, & Anton, 2002; Greenfield, Kaplan, & Ware, 1985; Klein & Winkelstein, 1996). An unanticipated outcome of the study involved the reaction of the medical team/caregivers. Social workers continually noted the strengthening of the therapeutic relationship between themselves and the participants. The patients were able to discuss their experience in a nonthreatening manner, often opening up to extended family members as well. This allowed for a deeper therapeutic relationship that sustained itself through the duration of their interaction. In addition, nurses, doctors, nurse practitioners, and dietitians consistently noted the lasting impression that seeing the photographs had on their practice. They repeatedly reported that viewing the photographs gave them a deeper insight into the patients’ experiences and would alter how they approached and interacted with the patients. Seeing the photos allowed staff to take a walk in the shoes of the patients and seemed to sensitize staff to the day-to-day experience of their patients. Photovoice and
other visual and narrative methods can enhance patientprovider communication, engage patients in their own healing, and humanize the BMT experience for staff so they may approach the patients with increased understanding and compassion (Lorenz & Chilingerian, 2011). There were limitations in the current study. The younger children did not always have a mastery of the camera, creating periodic frustration or blurry photos. Other patients were sometimes feeling too ill to take photos or discuss them within the time frame allotted. In addition, when patients were able to speak about their photos, privacy was at times an issue with staff members entering and exiting the room to provide care. Finally, the participating patients were not able to discuss their photographs with other participants. Despite the limitations, the findings of this study will assist health care providers in responding more effectively to children and young adults who are in the process of having a BMT particularly regarding their mental health and well-being. The experience of having a pediatric BMT is contextual, meaning that patients experience more than just the transplant itself. It is essential that health care providers understand BMT patients, including their strengths, challenges, and resiliency. Photovoice allowed the BMT patients themselves to more deeply reflect and report on their BMT experience versus studies where “proxy reporters” (ie, parents, physicians, teachers) report on what children are thinking and feeling (Riley, 2004). Conducting a study that concentrates on the voices and needs of BMT patients is the first step to creating sound and successful supplemental programs and interventions specifically suited to pediatric BMT patients during inpatient hospital stays. The last step of the photovoice process typically involves an action phase where participants organize and present their photos at a public exhibition to share findings with a broader community (Catalani & Minkler, 2010). In the next round of photovoice with BMT patients, we intend to explore methods by which patients will be able to dialogue and discuss photos with one another— either through online computer programs or social media. We also want to discuss with participating patients how and if they would like to display their photos publicly. Acknowledgments We want to express our gratitude to the bone marrow transplant patients, outpatients, and staff who were willing to share openly and support the study. Special thanks to Stella Davies, MD, Maureen Donnelly, LISW-S, Nancy Delaney, LSW, Sharon Penko, LISW-S, and Elizabeth Smith, LISW-Sfor their assistance with the project and to the National Cancer Assistance Foundation for their donation of cameras and supplies.
Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
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Journal of Pediatric Oncology Nursing 31(5)
Funding The author(s) received no financial support for the research, authorship, and/or publication of this article.
References Baker, F., Zabora, J., Polland, A., & Wingard, J. (1999). Reintegration after bone marrow transplantation. Cancer Practice, 7, 190-197. Bohachick, P., Taylor, M. V., Sereika, S., Reeder, S., & Anton, B. B. (2002). Social support, personal control, and psychosocial recovery following heart transplantation. Clinical Nursing Research, 11(1), 34-51. Buchsel, P. C., Leum, E. W., & Randolph, S. R. (1996). Delayed complications of bone marrow transplantation: An update. Oncology Nursing Forum, 23, 1267-1291. Campos, M., & Olaya, A. (2011). Anxiety in bone marrow transplant patients. Pediatric Research, 70(Suppl. 5), 308-308. Catalani, C., & Minkler, M. (2010). Photovoice: A review of the literature in health and public health. Health Education & Behavior, 37, 424-451. Creswell, J. W. (2013). Qualitative inquiry & research design: Choosing among five approaches (3rd ed.). Thousand Oaks, CA: Sage. Drew, S. E., Duncan, R. E., & Sawyer, S. M. (2010). Visual storytelling: A beneficial but challenging method for health research with young people. Qualitative Health Research, 20, 1677-1688. Felder-Puig, R., di Gallo, A., Waldenmair, M., Norden, P., Winter, A., Gadner, H., & Topf, R. (2006). Health-related quality of life of pediatric patients receiving allogeneic stem cell or bone marrow transplantation: Results of a longitudinal, multi-center study. Bone Marrow Transplant, 38, 119-126. Greenfield, S., Kaplan, S., & Ware, J. E., Jr. (1985). Expanding patient involvement in care: Effects on patient outcomes. Annals of Internal Medicine, 102, 520-528. Hergenrather, K. C., Rhodes, S. D., Cowan, C. A., Bardhoshi, G., & Pula, S. (2009). Photovoice as community-based participatory research: A qualitative review. American Journal of Health Behavior, 33, 686-698. Klein, S. A., & Winkelstein, M. L. (1996). Enhancing pediatric health care with music. Journal of Pediatric Health Care, 10(2), 74-81. Lee, S. J., Loberiza, F. R., Antin, J. H., Kirkpatrick, T., Prokop, L., Alyea, E. P., . . .Soiffer, R. J. (2005). Routine screening for psychosocial distress following hematopoietic stem cell transplantation. Bone Marrow Transplantation, 35(1), 77-83. Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Beverly Hills, CA: Sage. Lorenz, L. S., & Chilingerian, J. A. (2011). Using visual and narrative methods to achieve fair process in clinical care. Journal of Visualized Experiments, 48, e2342. McConville, B. J., Steichen-Asch, P., Harris, R., Neudorf, S., Sambrano, J., Lampkin, B., . . .Woodman, D. (1990). Pediatric bone marrow transplants: Psychological aspects. Canadian Journal of Psychiatry. Revue Canadienne de Psychiatrie, 35, 769-775.
Molassiotis, A., Van Den Akker, O. B. A., MiIigan, D. W., Goldman, J. M., & Boughton, B. J. (1996). Psychological adaptation and symptom distress in bone marrow transplant recipients. Psycho-Oncology, 5(1), 9-22. Packman, W. L., Crittenden, M. R., Fischer, J. B. R., Schaeffer, E., Bongar, B., & Cowan, M. J. (1998). Siblings’ perceptions of the bone marrow transplantation process. Journal of Psychosocial Oncology, 15(3-4), 81-105. Packman, W. L., Weber, S., Wallace, J., & Bugescu, N. (2010). Psychological effects of hematopoietic SCT on pediatric patients, siblings and parents: A review. Bone Marrow Transplantation, 45, 1134-1146. Parsons, S. K., Barlow, S. E., Levy, S. L., Supran, S. E., & Kaplan, S. H. (1999). Health-related quality of life in pediatric bone marrow transplant survivors: According to whom? International Journal of Cancer, 83(Suppl. 12), 46-51. Patenaude, A. F. (1990). Psychological impact of bone marrow transplantation: Current perspectives. Yale Journal of Biology and Medicine, 63, 515-519. Radley, A., & Taylor, D. (2003). Remembering one’s stay in hospital: A study in photography, recovery and forgetting. Health, 7, 129-159. Riley, A. W. (2004). Evidence that school-age children can self-report on their health. Ambulatory Pediatrics, 4, 371-376. Strack, R. W., Magill, C., & McDonagh, K. (2004). Engaging youth through photovoice. Health Promotion Practice, 5, 49-58. Streisand, R., Rodrigue, J. R., Houck, C., Graham-Pole, J., & Berlant, N. (2000). Parents of children undergoing bone marrow transplantation: Documenting stress and piloting a psychological intervention program. Journal of Pediatric Psychology, 25, 331-337. Vannatta, K., Zeller, M., Noll, R. B., & Koontz, K. (1998). Social functioning of children surviving bone marrow transplantation. Journal of Pediatric Psychology, 23, 169-178. Wang, C., & Burris, M. A. (1997). Photovoice: Concept, methodology, and use for participatory needs assessment. Health Education & Behavior, 24, 369-387. Wang, C., Yi, W., Tao, Z., & Carovano, K. (1999). Photovoice: A participatory action research strategy applied to women’s health. Journal of Women’s Health, 8, 185-192. Yi, J., & Zebrack, B. (2010). Self-portraits of families with young adult cancer survivors: Using photovoice. Journal of Psychosocial Oncology, 28, 219-243.
Author Biographies Carrie L. Breitwieser, LISW-S, ACHP-SW, is a bone marrow transplant social worker in the Cancer and Blood Diseases Institute at Cincinnati Children’s Hospital Medical Center. Lisa M. Vaughn, PhD, is a professor in the Pediatrics Department at Cincinnati Children’s Hospital Medical Center/ University of Cincinnati College of Medicine. She is a social psychologist and medical educator and has a joint appointment with University of Cincinnati, College of Education, Criminal Justice, and Human Services.
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