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SP0140 Psychological support and education as the main aspects of systemic lupus erythematosus “my life” programme for patients
  1. K Nowicka-Sauer,
  2. M Koseda-Dragan,
  3. M Hebanowski
  1. Connective Tissue Diseases Unit, Department of Family Medicine, Medical University of Gdansk, Gdansk, Poland

Abstract

Background The objective of our previous research was to investigate the main problems, needs and emotional state of patients with SLE. We found that the sensation of limited knowledge of the disease, mood disturbances, depression, anxiety, pain and fatigue are the most common problems of our patients. As we know, the psychological wellbeing and the attitude towards the disease are important factors influence individuals’ lives. In connexion with it we tried to create the programme which would help our patients to understand their illness, to improve their “living with lupus” and to find the more effective and satisfying way of coping with SLE (if needed). In this work we are presenting the main goals of the SLE “MY LIFE” PROGRAMME including medical and possible psychological consequences of lupus and methods which we are going to use in our programme.

Objectives of the SLE “My Life” programme The most important aims are:

  • to increase knowledge about the disease

  • to reduce anxiety

  • to improve self-care and self-management

  • to “wake up” an activity and independence

  • to increase psychological self-awareness

  • to give support

  • to activate family members and/or friends

Methods

  1. “What is lupus?” – “Education meetings” for patients and patients’ family members and/or friends with physician and psychologist

  2. “What does lupus mean to me?” – oral sessions: learning self-observation skills referring to:

    • pain

    • fatigue

    • symptoms of the disease and flare symptoms

    • emotions/feelings/thoughts – what do the patients think of e.g. their fears/anger, relatives/relationship, life/future etc.

  3. “What can I do?” – “active session”: practising self-observation and self-care results – “My experiences, my success”.

  4. “Am I satisfied?” – the evaluation of the programme.

    The patients’ satisfaction and the effectivity of the programme are going to be evaluated.

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