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Keywords:

  • action research;
  • chronic illness;
  • fatigue;
  • health education;
  • multidisciplinary;
  • rheumatology

Aim.  To evaluate an educational program for people with systemic lupus erythematosus using an action research approach.

Background.  People with systemic lupus erythematosus can benefit from attending patient education programs that address their psychosocial needs. Although patient education has always been a feature of practice, educational programs have not always included patients’ input into the design. Involving patients in all stages of a project is a challenge for both professionals and patients.

Methods.  One participatory action research cycle was used to explore peoples’ learning needs and views on form and content of the program and to explore teaching and learning competence in the multidisciplinary team. The decision on how to develop the educational program was based on focus group interviews and field notes. The educational program was implemented in 2001 with two groups of patients (n = 13) and outcomes of action evaluated at an individual level using quality of life, pain, fatigue and physical well-being instruments pre and post implementation.

Results.  The adoption of new roles was a challenge for both patients and members of the multidisciplinary team. Training to combine counselling with interactive teaching and learning methods was wanted by professionals. Patients said safe environments which facilitate learning experiences and communication with professionals are essential.

Conclusion.  Clinical competence combined with patient knowledge and experiences were used to develop a patient centred educational program and to plan further action. Collaboration in the multidisciplinary team and with patients should be considered in both the planning and implementation of patient education programs.

Relevance to clinical practice.  The potential for patients to collaborate in designing programs for improved self-care management is tremendous. The information gained from this study can be used to inform educational program planning for systemic lupus erythematosus patients and future collaboration in the multidisciplinary team.