This is what life with cancer looks like: exploring experiences of adolescent and young adults with cancer using two visual approaches

Abstract

Introduction Talking about illness experience can be challenging for adolescents and young adults (AYAs) with cancer. Visual tools, in addition to spoken language, might make this easier, such as rich pictures and photovoice. We aimed to obtain a comprehensive view of the cancer experience of AYAs by using rich pictures and photovoice. Methods AYAs (18–35 years old) who had any type of cancer, or were in remission from cancer, were eligible. AYAs drew rich pictures about their experience of living with cancer and explained these during subsequent interviews. Some of the AYAs also participated in photovoice and spent two days with a photographer to make photos about their illness experience. Rich pictures and photos were first analyzed separately, using open coding, after which the identified themes were compared. Results Twelve AYAs made rich pictures (RPs), of whom seven also participated in photovoice. The two most predominant themes emerging from the data were struggles related to the future and defining one’s identity. The AYAs expressed concerns for the future related to relationships, education, and employment. Relating to defining one’s identity, many AYAs expressed that the cancer had a negative impact on their body- and self-image. The main themes were visible in the RPs as well as in the photovoice; however, subtle differences in sub-themes were found. Conclusions We found that cancer has an effect on many aspects of AYAs’ lives. Further research on how the identified themes play a role in the lives of AYAs with cancer is needed.

The ‘Rich Pictures’ Method: Its Use and Value, and the Implications for HRD Research and Practice

“…As Manojlovich et al (2015) state, however researchers can often "fail to recognize that one technique alone cannot capture the phenomenon of interest" (p. 68). While RPs can elicit tacit data about experiences that may be hard to put into words (Crilly et al, 2012;Morse, 2009) for example how clinicians perceive and respond to complex situations (LaDonna et al, 2018), how medical students handle moral dilemmas (Ribeiro et al, 2021) or how individuals cope with cancer (Bood et al, 2021(Bood et al, , 2022 interviews extend exploration of the topic and can clarify the use and meaning of images. Unsurprisingly then, most RP research involves participants completing a 'rich picture' alongside an interview.…”

“…As such it could be used to gather feedback on both the group and the individual-level issues often ignored when monitoring organizational development interventions (Van Aken, 2007). Examples of its application with individuals includes Bood et al’s (2022) study of young peoples’ experience of living with cancer where individual patients were given 30 minutes to complete a ‘rich picture’ then interviewed about why they had drawn particular images. This approach works well for exploring a range of participant ‘situations’ but is particularly helpful when individuals find it difficult to speak about what they have drawn or need additional time and support in opening up.…”

“…In addition, while asking follow-up questions can encourage additional sketching to augment an RP (Bell & Morse, 2013a) there is also the potential for the context and perceived or actual power dynamics to have an impact (Bowen & Evans, 2015; Fougner & Habib, 2008). Bood et al (2022), too, highlighted the demanding nature of visual methods. For some types of research – where participants are sharing details of a current situation such as living with advanced cancer – it is important for researchers to build in time for breaks, debrief participants, and offer access to support resources outside the study.…”

“…Uses of the 'Rich Pictures' Method. Before another method (e.g., interviewseeBowen & Evans, 2015) • At the same time as another method (e.g., interview) -Interviews can take place at a later date e.g.,Molinaro et al (2021) • After another method (e.g., ethnographyseeConte & Davidson, 2020; e.g., interviewseeCristancho et al, 2015) Alone or with others • Individual completion (e.g.,Bood et al, 2022) …”

Using Photographs to Understand the Context of Health: A Novel Two-Step Systematic Process for Coding Visual Data

“…In Photovoice, participants can use disposable, digital, or smartphone cameras to take photos in response to a photo-taking or question prompt. After a photo-taking period, researchers engage participants in photo elicitation interviews or focus groups, contextualizing what they chose to photograph and why (Wang & Burris, 1997; Wang, 1999; Glenis & Boulton, 2017; Lee et al, 2019; Baig et al, 2019; Cheezum et al, 2019; Lofton et al, 2020; Aparicio et al, 2021; Craft-Blacksheare et al, 2021; Feingold et al, 2021; Morrow et al, 2022; Bood et al, 2022; Jackson et al, 2022). Researchers may use sets of guided discussion questions with participants to learn more about their photos.…”