TY - JOUR
T1 - This is what life with cancer looks like
T2 - exploring experiences of adolescent and young adults with cancer using two visual approaches
AU - Bood, Zarah M.
AU - van Liemt, Floor
AU - Sprangers, Mirjam A. G.
AU - Kobes, Annita
AU - Weeseman, Yvonne
AU - Scherer-Rath, Michael
AU - Tromp, Jacqueline M.
AU - van Laarhoven, Hanneke W. M.
AU - Helmich, Esther
N1 - Funding Information: This work was supported by The Young Academy, Royal Dutch Academy of Sciences and the Dutch Cancer Society (grant number 11507). Publisher Copyright: © 2021, The Author(s).
PY - 2022/4
Y1 - 2022/4
N2 - 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.
AB - 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.
KW - AYAs
KW - Cancer
KW - Patients’ experiences
KW - Photovoice
KW - Rich pictures
KW - Visual tool
UR - http://www.scopus.com/inward/record.url?scp=85122290103&partnerID=8YFLogxK
U2 - https://doi.org/10.1007/s00520-021-06775-9
DO - https://doi.org/10.1007/s00520-021-06775-9
M3 - Article
C2 - 34988705
SN - 0941-4355
VL - 30
SP - 3353
EP - 3361
JO - Supportive Care in Cancer
JF - Supportive Care in Cancer
IS - 4
ER -