Learning from the collective story: Information needs of people with colorectal cancer

Abstract

Background: Our inter-professional research team believes that providing useful, relevant, and timely information for people diagnosed with cancer is a key component of ethical and quality care. This paper fills a gap in the literature on the information needs of people affected by colorectal cancer by presenting the voices of people affected. Methodology and methods: Finding no comprehensive research that fully identifies the information needs of people with colorectal cancer from their perspective, we designed a research project using the methodology narrative. Using three sources of data-stories found in the literature analysed using the method scoping review, researcher experience, and first hand accounts-we present a narrative of the what, when, and how of information needs of people with colorectal cancer. Findings: This re-storying can be represented by four very broad themes: i) finding my way in the moment(s), ii) understanding treatment, iii) ways to live, and iv) post treatment information needs. It also considers how people want/need information at various points along the care trajectory. Summary: This narrative begins and ends with the assertion that every person is unique and, to follow the principles of patient-centred care, healthcare providers must determine how each person's information needs can best be met, thereby improving people's experience not only of receiving care, but of living with cancer.

Perspectives of adult survivors of colorectal cancer with an ostomy on their needs: synthesis of qualitative research studies

“…In addition, information regarding daily activities can help them accept their condition and prepare ways to overcome the difficult situations they will face. As a trusted and recommended source of information, healthcare workers need to share information clearly and understandably, taking into account several issues such as culture, language, and others (van Mossel et al, 2014). Using social media to share information may give survivors more opportunity to communicate, increase understanding of their conditions (Pellino et al, 2017), and enhancing their health literacy (Aoki, Inoue, 2017).…”

“…Male CRC survivors are often mocked and bullied by girls (Beaver et al, 2010). Rejection has a negative impact on their psychological condition and situation (van Mossel et al, 2014). Often, they are in a state of disbelief and are anxious about the future (Sahay, Gray, Fitch, 2000).…”