What are cancer patients’ experiences and preferences for the provision of written information in the palliative care setting? A focus group study

Abstract

Background:

Whilst there is a wide range of literature pertaining to the need for excellent verbal communication within the palliative care setting, there is a paucity of research designed to identify the written informational needs of such patients.

Aim:

To identify the experiences and wishes of patients known to a specialist palliative care service in England with regards to written information. We considered both generalizable written information (such as leaflets, books and internet resources) as well as individualized information (for example, copies of letters given to patients).

Design:

Five focus group discussions were recorded and transcribed for analysis.

Setting/participants:

The focus groups took place at one specialist palliative care unit in England. Twenty-two patients with cancer over the age of 18 years were recruited.

Results:

Inductive, realist thematic analysis of the data set was performed. Themes have been broadly categorized into three main areas: (i) patients’ views on the role of written information, (ii) their experiences of written information in different formats, and (iii) their thoughts on what written information they would most value.

Conclusions:

Written information needs for this patient group vary greatly, sometimes in ways which can be predicted. Using a patient-centred approach to elicit information around an individual’s coping strategies, desire for knowledge and empowerment may be helpful. The data supports a proactive approach to making available (to those who want them) clear, concise and attractive leaflets.