ABSTRACT
AIMS: This study aimed to understand patient information needs and how best to meet them in order to improve rehabilitation provision and aid disease self-management by exploring experiences of people who had recently completed a pulmonary rehabilitation programme in a community hospital setting. METHODS: Qualitative research using focus groups was undertaken with 23 patients who had completed pulmonary rehabilitation within the previous four months. The focus groups were tape-recorded and contemporaneous notes made. The tapes were transcribed verbatim and template analysis was used to develop themes. FINDINGS: The key information needs were for a full understanding of the disease to be generated for patients, their families and the wider public much earlier in the disease process and preferably at the point of diagnosis. Patients perceived that they needed to come to terms with the condition. In order to improve disease self-management feelings of anxiety and frustration should to be addressed with the suggestion that individual counselling might be made available through the rehabilitation programme. The need for continued support was highlighted with an emphasis on peer group support activities. CONCLUSIONS: The findings have implications for primary care in terms of unmet needs in the early stages of the condition and pulmonary rehabilitation programmes in terms of providing individual counselling and ongoing peer group support to aid disease self-management.