Focusing on everyday life with Addison’s disease : Health promotion and secondary prevention

• The overal laim of this study was to generate knowledge about everyday life among people living with rare Addison’s disease (AD). Understanding experiences in contexts of everyday life are important for public health, equity in healthcare, and in order to design tailored health promotion programs, which are in line with EU policy. Addison’s disease is a rare disease and people with AD face challenges due to limited existing knowledge about the disease and often encounters health care providers who are not familiar with best practices in the area. Treatment and follow up of AD also vary greatly within Europe even though a European consensus exists and few reports of secondary and tertiary prevention have been published. AD is also usually monitored and treated in the specialist health care where individually delivered health care is dominant. In Sweden, it has been argued that all health care should integrate disease prevention and health promotion and that group-based self-management approaches could be compliments to traditional caring and curative health care. This study was conducted with qualitative methods and a participatory approach, engaging five participants with AD. Under seven weeks the participants photographed their everyday life and participated in weekly group-discussions. Preliminary results show that everyday life with AD can be more complex than previously thought and that extended information and self-management education about the disease and everyday life is perceived as important to maintain wellbeing. Also, participants perceived that health care could play a bigger role regarding health promotion and preventive actions through extended pharmacological and non-pharmacologica lparts of group-based interventions.Key messages:Specialist health care can play a role regarding preventive self-management schooling for persons with rare Addison’s disease to improve wellbeing in everyday life.Specialist health care can play a role regarding health promotion and disease prevention through extended self-management education for persons with rare Addison’s diseas.

Ämnesord

MEDICIN OCH HÄLSOVETENSKAP  -- Hälsovetenskap -- Folkhälsovetenskap, global hälsa, socialmedicin och epidemiologi (hsv//swe)

MEDICAL AND HEALTH SCIENCES  -- Health Sciences -- Public Health, Global Health, Social Medicine and Epidemiology (hsv//eng)

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