Abstract
Purpose:
Improvements in cancer outcomes for adolescents and young adults with cancer lag behind those of other age groups, and few psychosocial interventions have been developed specifically for this population. This study sought to explore both adolescent cancer patients' interest in engaging in a participatory study and their perceived coping needs.
Methods:
Applying a grounded theory and participatory action approach, cancer patients aged 13–19 years who were at least 3 months post-diagnosis at a tertiary pediatric oncology service were invited for group discussions and activities involving a t-shirt design and blog. Inductive coding and thematic analysis were applied to session transcripts.
Results:
Four themes were elicited regarding coping with cancer as an adolescent: adjustments related to physical and social participation, social perceptions, physical effects, and health-related communication needs. Peer-to-peer messages aligned with shared coping strategies, particularly featuring elements of humor and resilience while connecting to culture and redefining one's individual and group identity.
Conclusion:
Participatory methods can be effective in eliciting perceptions and needs in adolescents with cancer, and warrant further attention in research efforts to define and assess interventions and patient-reported outcomes for adolescents with chronic disease.
To promote AYA engagement in articulating self-care needs and intervention preferences, a participatory approach seems suitable. Participatory research is a broad approach whereby participants are invited to define actively how research is conducted (with themselves and not “on” others); it may include arts-informed methods (including visual arts) to encourage reflection alongside creative expression as part of the research process and output.16,17 Participatory practices have been increasingly recognized for their potential impact across community and academic arenas on policies and research design and evaluation. 18 Participatory research has been described as engagement in reflective collaborative learning, through which participants may study and adapt their social practices, both individually and collectively. 17 Participatory strategies have helped promote self-efficacy and uncover perspectives, with largely untapped potential to engage adolescents with chronic illness.16,19–21
This study explored adolescents' needs for coping with cancer in a participatory study as they designed a t-shirt and/or blogged with and for other adolescents with cancer. A qualitative approach was applied as an established method to explore topics where little is known. 22 This topic was explored concurrently with probing into patients' perspectives on online and peer networking, the findings of which are reported separately.
Methods
Design
This qualitative study incorporated grounded theory methods, involving focus groups with an adaptive interview guide, constant comparison, member checking, and recruitment until data saturation where no additional insights emerge. 22 Participatory approaches throughout sessions allowed adolescents' interests to guide the topics and activities explored. 16 The study was approved by the Sidney Kimmel Comprehensive Cancer Center's Clinical Research Office and the Johns Hopkins Bloomberg School of Public Health's Institutional Review Board.
Participants
Adolescents aged 13–19 years at the time of enrollment and who were treated at a tertiary pediatric oncology center were purposively recruited if they had: (1) a malignancy diagnosed at least 3 months earlier, (2) stable clinical status, and (3) an interest in the study, and (4) the English skills to participate. Study information was posted in inpatient/outpatient areas; eligible participants were suggested by providers or parents to the primary author, who met with families to offer informed consent. Consent discussions involved an adult guardian, as well as the adolescent when adolescents were younger than 18. Participants were aware that the primary author, a visiting pediatric oncology fellow trained in study methods, was outside of the clinical team.
Patients were invited to online/in-person groups of two to four members. A small sample size was anticipated to allow for in-depth exploratory analysis 22 and was based on studies where richness was found with 6 to 11 adolescents.14,23–25
Twenty-one adolescents meeting eligibility were approached; two-thirds (n=14) were female. Sixteen adolescents (76%) consented. Pre-study, none were friends, and no on-site peer-networking groups existed. Due to logistic constraints that involved scheduling around patients' personal and health needs, eight patients participated in five focus groups (two groups of three each meeting twice, and one group of two meeting once) over 2 months. Three groups were hosted partly via internet camera or telephone conference to facilitate interactions; two groups were in inpatient settings. Data have been presented without identifying speakers, with generic A and B denoting different speakers in exchanges. Among those enrolled, there were no discernible differences between those that participated in focus groups and those that did not (Table 1).
Self-reported age at the time of the study.
Racial/ethnic minority as defined in the United States per the 2010 census (Asian American; Black or African American; Hispanic or Latino; Native Hawaiian and Other Pacific Islander; American Indian and Alaska Native).
ALL, acute lymphoblastic leukemia; CML, chronic myelogenous leukemia; n/a, not available, as the self-report questionnaire was provided to participants at the time of their first focus group.
Procedure
Participants completed a survey at their first session asking about their age, cancer type, and time since diagnosis (Table 1). Semi-structured, open-ended questions formed starting points for focus group discussions (Table 2) after which participants guided discussions and activities. Participants were offered optional creative opportunities: to design a t-shirt (on- or offline, as a group or individually) or to join a blog created for the study (inaccessible via public search engines), both with the intent to share support for adolescents with cancer. A participatory approach was adopted throughout as adolescents determined how to spend their time, including how discussions and design activities were intermixed, and whether their discussions and activities reflected primarily personal experience sharing within the group or broader ways their ideas could support others. Participants were given opportunities to discuss their t-shirt design or blog contributions. Per the participants' choice, the t-shirt design activity was largely done during focus groups, while the blog evolved as an optional pursuit outside of the group sessions.
Focus groups, each approximately 60 minutes, were audio recorded in an inpatient/outpatient private room. The blog was accessible to participants upon enrollment, with all agreeing to share one blog. Focus groups and blogs were moderated by the primary author; family and healthcare staff were not included. Debriefing with the moderator and/or social workers was offered.
Websites allowing users to design t-shirts were reviewed during and between focus group sessions to identify websites with preferred features, including for graphics, text, and ease of use. Electronic coupons for ordering a t-shirt were offered to each participant.
Analysis
Sessions were transcribed verbatim. Potential themes were compared across data sources (transcripts, observation field notes, t-shirt messages, and investigator reflexive memos 26 ) as part of data triangulation. 22
Qualitative analyses involved repeated readings to identify and organize themes that emerged in inductive content analysis, without defined a priori themes. Salient themes were integrated into subsequent groups for feedback as a means of member checking. Using an iterative approach, one coder analyzed for emergent themes while a second independently corroborated analyses and interpretations. A third investigator independently reviewed analyses for coherence and resonance. Matrices were developed to facilitate comparative interpretation and explore associations by allowing side-by-side review of both transcribed data across participants and groups and of the themes that emerged over time as data were organized. Data were explored for resonance, transferability, and implications.27–30 Recruitment was stopped after concurrent analyses identified no new emergent themes after focus group 4, with affirmation of these same themes with focus group 5, consistent with data saturation.
Results
Participants' data from the group interactions and design activities were consolidated into 2 interconnected partitions for analysis: themes elicited concerning adolescents' needs in coping with cancer, and those on coping strategies and peer-to-peer supportive messages.
Themes on needs in coping with cancer
Four inter-related themes emerged regarding how adolescents' cancer diagnoses prompted coping needs (Table 3): adjustments related to physical and social participation, social perceptions, physical effects, and health-related communication needs.
Physical and social participation
Cancer was described as being “isolating” (Focus Group [FG] 1), affecting participation in school, extracurricular activities, and home life. One adolescent described visiting her sports team:
…before our first game I got diagnosed and had to go on home-schooling…I lost the entire year…people ask when I'll come back, I say, I don't! [mock laugh] I'm done! (FG1)
Functional participation was limited for reasons including impaired strength (FG1, FG3), medical restrictions (“not unless my platelets are 45 or above [laugh]” [FG2]), or others' perceptions of their physical abilities. Cancer was depicted as affecting adolescents' ability to self-determine their participation, and as a context in which they “lose independence” (FG3), despite wishing to be “self-sufficient” (FG1). Nonetheless, several shared about trying to re-engage in age-appropriate activities, from “field trips and stuff, with your school” (FG3) to academic tests (FG3).
Social perceptions
All participants spoke of coping with others' altered perceptions of them, from having “people that you've never talked to, now are like, wanting to be, nice” (FG1), to having friends “shut [you] out” or take “2 years before they…started treating me like a normal person again” (FG5).
Several spoke of the idea one termed “pulling the cancer card,” in which having cancer allowed them to avoid tasks or obtain things from parents, teachers, and sympathetic community members (FG1, FG3). Adolescents also described having to deal with others' perceptions of how cancer would limit them, as in one case: “everybody was like, ‘ooh, you're gonna die, and you're not gonna be able to walk across the stage [at graduation].’ And I'm like, watch me!” (FG5).
Fearing alienation was expressed in all but one focus group, including the fear of rejection by those close to them, as in this example:
People probably don't want to be friends with a person that has cancer…I'm just afraid of gettin’ rejection…I can honestly say, I didn't tell my boyfriend yet, that I have [pause] cancer…I'm not sure if he's gonna, how he's gonna handle the news…(FG5)
Physical effects
Adolescents spoke of concerns about the physical effects of their diagnosis and treatment, including weight, hair, and limb loss, as well as symptoms such as nausea and fatigue (FG1, FG3, FG5). One adolescent described:
Do you see these twigs that we're calling legs right now? [Poking at legs; laughs]…Seriously, there's nothing else there! (FG1)
In addition to coping with the transition from being “a normal, healthy person” (FG5) or being “in, like, the best shape of my life” (FG1), several shared worries over how others would view their body, including “how would people treat me, if they see me with no hair, and no eyebrows and eyelashes…” (FG5).
All but one participant spoke about either having fears they were “gonna die” (FG1, FG5) or having gone through near-dying experiences:
I was in here for a fungal infection…in my kidneys…my brain…That's probably why I was so stupid! [others smile] It was in my GI tract…everywhere…It almost killed me…summer after that I got an E. coli infection, and that almost killed me. (FG3)
Health-related communication needs
Most participants talked about unmet needs and challenges in communicating with others about their health, particularly with health providers. A few shared that they did not ask (FG5) or “want[ed] to get as far away from this as possible!” (FG1) but were told more about their disease than they wanted (FG5). Most, however, talked about barriers to asking their providers questions, including being afraid to ask (FG5) and not knowing what to ask due to their “brain…kinda going at a thousand miles a minute” (FG1) after diagnosis or to feeling they were not equipped to ask, as described by one adolescent:
They tell you to [ask questions]—but you're never gonna…Why would we…Why would we quest—we're not doctors, we haven't gone to college, we haven't gone to graduate school, this is not our life career…(FG1)
Adolescents described how these challenges sometimes led to feeling unprepared for treatment effects and implications (FG3), including severe nausea (FG3), treatment duration (FG1), and risk of disability and death (FG1, FG3), as in this case:
I was told I would never run again [voice cracks; tearing], after my surgery…I mean, they could have told me like before they chopped my leg off! (FG1)
As in this example, unmet communication needs could impact adolescents' ability to cope with the other aspects mentioned above—physical effects, social perceptions, and participation.
Themes on coping strategies and t-shirt messages to support adolescents with cancer
Emphasizing humor and resilience, often in connection with one's popular culture and one's identity, were recurrent components of adolescents' coping strategies and t-shirt designs (Table 4). Adolescents often acknowledged the resilience cancer demanded of them and encouraged one another with humor, as in this exchange:
A: Did you get hot flashes with the Lupron at all? B: Oh, my god, yeah! A lot of times at night I would wake up in a pool of sweat, it was terrible! (A: Yeah!)…I, one time had to stick like half my body in the fridge [both laugh] to, like, cool off!…We're not supposed to have hot flashes at 15! [all laugh] (FG4)
The concepts conveyed included the importance for adolescents to nurture both individuality and dynamic group identity. In addition to mentioning aspects of their individuality, adolescents also spoke as members of a group to which they had a sense of belonging or authority to represent:
A: You talk to like three of us, you pretty much have the gamut. B: You have the cancer community. [shared laugh] (FG1)
Acknowledgment of the desire to identify with one's broader culture was often expressed, as many related their cancer experiences to popular culture, including television, movies, and advertising. One adolescent described the response she hoped to receive with her t-shirt:
Actually if you wear it, then some people will think that…maybe it's a fundraiser or something. They don't necessarily know that you have [cancer]. (FG1)
Overall, participants dedicated more time and attention to the t-shirt design activity. Two participants sought out limited participation in the blog, while others did not actively engage. All participants designed a t-shirt; all preferred to develop individualized t-shirts and messages (in lieu of a consensus or group t-shirt), and all favored sharing their ideas during the focus groups.
Adolescents commented positively on the experience, with half of the participants noting this was their first opportunity to meet another adolescent with cancer; one noted it was “interesting to see…similarities in people's stories” (FG1), while others commented on the value of exchanging resources (FG3).
Discussion
This participatory study with adolescents undergoing treatment for cancer suggested potential key coping needs in this population concerning physical and social participation, social perceptions, physical effects, and health-related communication needs. Rather than stemming from fixed questions or a predefined research trajectory, these needs emerged through involving adolescents in participatory activities integrated in focus group settings, which allowed them to explore their own ideas of coping with cancer. Many of these needs were reported as impacting their attitudes and behaviors, from communication with health providers to social engagement. Adolescents shared supportive strategies in their discussions and t-shirt designs, highlighting humor and resilience, particularly in the context of relating to one's culture and defining one's identity, with elements that likely would not have emerged in the same way using traditional interviewing or surveys. Given that participatory research seeks to engage potentially disconnected groups, one sees the appeal of applying such an active, adaptable process to working with adolescents with cancer. Altogether, participants' direct expressions of appreciating the sessions as well as their choice to attend and actively engage during the sessions with thoughtful responses and ideas suggest that such participatory efforts are of great interest for at least a subset of patients.
Experiences in this study highlighted considerations for future studies. Studies integrating qualitative methods with participatory approaches often result in unique and helpful perspectives, while also requiring dedicated time for study preparation, data gathering, and concurrent analysis for all such studies.31–34 Engaging adolescents undergoing treatment in group activities may involve additional time, flexibility, and coordination as participants' availability, health status, and interests may change. Online and mobile tools may help to engage adolescents while also adding complexity, from the need to review online confidentiality issues with families to considering limitations in internet access. In this study, several groups incorporated internet camera or telephone conference, which helped to increase accessibility. These tools, which were well accepted by the participants, may help similar groups with obstacles to in-person meetings (including patients with varying inpatient/outpatient schedules, hospital accessibility, and infection isolation needs). Conversely, although design activities were optional, the nature of the activities, including internet components, may also have dissuaded some adolescents with less interest in those areas. Possible reasons why fewer participants dedicated time toward the blog as compared to t-shirt design may have included less direct social engagement and a potentially less appealing interest (writing), as well as variable comfort with and access to the internet. Altogether, explorations are underway regarding online tools for adolescents with cancer, including for social networking, data collection, and cognitive behavioral therapy delivery;35–38 incorporation of adolescents in participatory studies could augment meaningful development and interpretation of such tools.
Findings should be interpreted with the awareness that this was a small sample from 1 pediatric oncology center, without an existing peer patient networking structure at the time of study, although study recruitment stopped upon reaching data saturation and past studies involving this population or such study methods have involved similar sample sizes.14,23,24,37 Nonetheless, direct quotations have been included so that readers may consider the resonance and applicability of these reported coping needs with those of adolescents in their own population.
While participants volunteered themselves as being “shy,” those accepting participation in this study may be more interested in engaging with other adolescents, such that their coping needs and messages for other adolescents may differ from non-participants. Future studies could include methods that allow options for one-on-one interviews and/or surveys. Longitudinal and more varied participatory group options (including community-based activities) may offer different insights and greater input than the short-term interactions possible here. Ongoing evaluation of study methods is important so that participatory approaches can be both enjoyable and helpful in producing rigorous data to guide interventions for this population.
Given the feasibility of such participatory research, further work could engage adolescents to develop and refine assessment measures in physical and psychosocial domains that they find most meaningful as they undergo cancer treatment. Studies in such a participatory framework, particularly longitudinally, could help define adolescent-appropriate, patient-reported outcomes and means of evaluating these in the context of treatment or supportive care trials and interventions. Engaging young patients in this way could thus add new dimensions to patient-reported outcomes, helping to target trials and interventions to AYA-specific needs.
Conclusion
This study adds to the literature on participatory and psychosocial interventions engaging adolescents with cancer. Using a participatory design, cancer-coping needs and strategies that adolescents have used and would foster for others were elicited from the perspectives of adolescents themselves. The utility and challenges of such an approach were noted as guidance for future studies. Altogether, these ideas may help providers, families, and policy makers identify gaps in current practices intended to support adolescents with cancer, and could be a starting point for practices in which adolescents' input becomes more prominent.
Footnotes
Acknowledgments
The authors are grateful to all the adolescents who inspired the design of this project and those that shared their invaluable thoughts and time, and to Shannon Mee, Lori Seraphin, Matthew Eggen, and Kathleen Orr from the Johns Hopkins Hospital Pediatric Social Work team for their support and review of ideas for this project. Catherine Lam was supported by a Hopkins Sommer Scholarship at the time of the study.
Author Disclosure Statement
No competing financial interests exist.