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
“What is lupus?” – “Education meetings” for patients and patients’ family members and/or friends with physician and psychologist
“What does lupus mean to me?” – oral sessions: learning self-observation skills referring to:
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.
“What can I do?” – “active session”: practising self-observation and self-care results – “My experiences, my success”.
“Am I satisfied?” – the evaluation of the programme.
The patients’ satisfaction and the effectivity of the programme are going to be evaluated.
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.