Background

Patients and carers information needs vary at different stages across the cancer trajectory with the need for bio-medical information at diagnosis and through treatment to supportive and rehabilitative information post treatment.  People affected with laryngeal cancer have identified how the impact of treatment affects their quality of life during and beyond their treatment with a need identified for the provision of information in the post treatment phase.

Method

Serial, in-depth longitudinal interviews were carried out with a purposive sample of twenty patients and eighteen carers from the West of Scotland. Interviews (n=72) were carried out towards the end of treatment (Int1) and six months into follow up (Int2). All interviews were transcribed verbatim and analysed using thematic framework analysis.

Results

Through treatment information from professionals was predominantly bio-medical, prescriptive, focusing on managing the physical effects of treatment, whereas information sourced and used from fellow patients was subjective, focusing on support and the practical aspects of managing treatment side effects in the context of participant’s lives.  In follow up many participants were not prepared for the severity of symptoms, how long they would experience them and how to manage them effectively.  Due to the lack of information or the vagueness of information from professionals and the lack of contact with fellow patients to source information from, participants described being in “limbo.

Conclusion

A lack of detailed information from professionals at the end of treatment and in follow up meant that many participants had poor experiences.  After receiving a wealth of information from a range of health professionals and fellow patients, many finished their treatment feeling apprehensive and unsure. In follow up participants reported how their actual experiences did not resonate with the information recieved and their understanding of it, as it did not provide them with the specific information they required to manage the consequences of their treatment in the context of their lives