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.

Keywords: AYAs; Cancer; Patients’ experiences; Photovoice; Rich pictures; Visual tool.

Fig. 1

Relationships — A Part of RP of P7 that shows a broken heart and a sad looking face. B Part of first RP of P5 that shows herself with a pregnancy belly and with red marked question mark, depicting the uncertainty if getting pregnant is still possible

Fig. 2

Education and work — A Part of first RP of P2 in which she drew herself surrounded by elements that are uncertain in the future, including the tumor, education, getting a career, and getting pregnant. B Photo from photovoice project in which the AYA is wearing her radiation mask to a job interview

Fig. 3

Feeling segregated from peers — A The first RP of P3 in which the AYA drew a line between her and her peers, depicting how she felt completely segregated from her peers. B Part of first RP of P9 where she drew herself on the island on the left, and others her age on the island on the right accomplishing things she cannot do because of the cancer

Fig. 4

Perceptions of others — A Photo from photovoice project of a building with scaffolds in opaque covering, to depict that no one can see the progress that is made inside. B Photo from photovoice of an AYA with a hairnet on, her back to the camera, and holding herself

Fig. 5

Changing appearance, self-image, and sexual orientation — A Part of RP of P7 that shows a scale, depicting how she gaining weight during cancer treatment. B Photo from photovoice project of an AYA showing off her changed body, that she trouble accepting. C Photo from photovoice project of entangled ribbons in the colors of the rainbow, referring to the LGBTQ community