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.