Information needs and experiences of receiving information at cancer recurrence: perspectives of patients and partners/carers

Abstract

Background: Current oncology policy and literature promotes the importance of providing information that meets the needs of patients and their partners/carers However, there is little evidence to guide health care professionals on the type of information required, and how best to deliver it, when cancer comes back. The aim of this study was to describe the information needs and experiences of receiving information from the perspectives of patients and their partners/carers at cancer recurrence.
Method: This was an exploratory study that used a qualitative design informed by principles of symbolic interactionism and grounded theory. Interviews were chosen as the method of data collection. Eighteen patients diagnosed with a first metastatic recurrence of breast or colo-rectal cancers were recruited from out-patient clinics at a cancer centre in England. Permission was sought to interview separately each patients' partner or person most significant to them (carer), of which sixteen partners/carers consented (total 34 interviews). Participants were asked to describe their experience of the recent metastatic diagnosis and the information they had required and actually received was explored. All interviews were tape-recorded, fully transcribed, and analyzed drawing on techniques of grounded theory.
Results: Cancer recurrence was a devastating experience for the majority of patients and their partners/carers. A number of patients presenting with cancer recurrence perceived delays in terms of gaining access to specialist opinion, information and support. Patients and their partners/carers had individual concerns, and sometimes different information needs in relation to the recurrence diagnosis, treatment and care. Partners/carers appeared to be at greater risk than patients of not having their information needs addressed.
Conclusion: Optimum information provision at cancer recurrence is a complex and ongoing process of balancing recipients' individual hopes and expectations with honest and accurate information. Health care professionals require communication skills that enable them to individualize their approach in giving information and support to patients and to negotiate appropriate partner/carer involvement.