Department of Medical Oncology, Cancer Center Amsterdam, Amsterdam University Medical Centers, University of Amsterdam, VU Medical Center, De Boelelaan 1117, 1081 HV, Amsterdam, The Netherlands.
Stichting F|Fort Foundation, Haarlem, The Netherlands.
Support Care Cancer. 2022 Apr;30(4):3353-3361. doi: 10.1007/s00520-021-06775-9. Epub 2022 Jan 5.
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.
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.
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.
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.
对于患有癌症的青少年和年轻人（AYAs）来说，谈论疾病经历可能具有挑战性。除了口语之外，视觉工具（如丰富的图片和影像声音）可能会使这变得更容易。我们旨在通过丰富的图片和影像声音来全面了解 AYA 癌症患者的体验。
有任何类型的癌症或癌症缓解的 AYA（18-35 岁）有资格参加。AYA 用丰富的图片来描述他们的癌症生存经历，并在随后的访谈中对其进行解释。一些 AYA 还参加了影像声音活动，与摄影师一起度过两天，制作关于他们疾病经历的照片。首先使用开放式编码分别对丰富图片和照片进行分析，然后比较确定的主题。
12 名 AYA 制作了丰富的图片（RPs），其中 7 名还参加了影像声音活动。数据中出现的两个最主要的主题是与未来相关的斗争和定义自己的身份。AYA 们对未来的关系、教育和就业表示担忧。关于定义自己的身份，许多 AYA 表示癌症对他们的身体和自我形象产生了负面影响。主要主题在 RPs 和影像声音中都可见；但是，在子主题中发现了细微的差异。
我们发现癌症对 AYA 生活的许多方面都有影响。需要进一步研究确定的主题如何在癌症患者的生活中发挥作用。
