• Kim Tomlinson, Stephanie Barker, and Katie Soden.
• School of Medicine and Health Practice, University of East Anglia, Norfolk, Norwich, UK. kimtomlinson@doctors.org.uk
• Palliat Med. 2012 Jul 1;26(5):760-5.

BackgroundWhilst 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.AimTo 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).DesignFive focus group discussions were recorded and transcribed for analysis.Setting/ParticipantsThe 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.ResultsInductive, 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.ConclusionsWritten 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.

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