Never-ending making sense: towards a substantive theory of the information-seeking behaviour of newly diagnosed cancer patients

Aim. The aim of this paper was to report a study which explored the information-seeking behaviour of patients newly diagnosed with cancer in the immediate postdiagnosis period.Background. Information is an important tool for cancer patients. There is evidence that patients’ information needs are not being adequately met and, in many cases, patients often do not recall much information at the time of diagnosis.Method. Using a grounded theory approach, a theoretical sample of 27 newly diagnosed patients was interviewed in their own homes. Data were analysed using grounded theory analysis procedures.Results. A substantive theory describing the transitions from ‘being traumatized’ by the diagnosis, through a phase of trying to ‘take it on’, through to ‘taking control’ is tentatively offered. It provides a theoretical framework to understand newly diagnosed cancer patients’ changing, varied and continuing needs and their efforts to regain some control over their lives. Their information-seeking behaviour seemed a journey of ‘never-ending making sense’ with ongoing discovery and new information needs as they struggled with the effects of the disease and treatments.Conclusions. The processes and stages identified in this study provide nurses with a framework to assess the readiness of patients to receive information and to assist them in their efforts to regain some control over their disease and their lives.Relevance to clinical practice. Health professionals need to be aware of these stages, to be equipped to assess the need of individuals for information and support.