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Keywords:

  • Patient experience;
  • lupus;
  • scleroderma;
  • group education

Abstract

Objectives:

The aim of this study was to investigate the impact of the pilot education programmes, entitled ‘Focus on Lupus’ and ‘Focus on Scleroderma’, upon participants' management of their disease.

Methods:

Five people with lupus and five with scleroderma were invited to take part in individual semi-structured interviews. Qualitative analysis of transcripts was performed using a framework approach. Views relating to changes in knowledge and behaviour, increased empowerment, meeting others and the format and delivery of the programmes were explored.

Results:

Analysis of the interviews revealed overall satisfaction with both programmes, however people with lupus had more positive feelings about their attendance. Both disease groups considered it valuable to meet others with the same disease and welcomed the involvement of a patient educator within the programme planning team. The main difference between the two groups concerned behaviour change. The lupus group revealed more definite life changes. Participants unanimously regarded the format of the programme highly and most were satisfied with the content. Copyright © 2004 Whurr Publishers Ltd.