Individuals with Addisons disease and their experiences of onset and self-care: new knowledge?
Aim: The aim of the study was to elucidate the experiences of onset and self-care among individuals with Addisons disease.
Background: Addisons disease, primary adrenal insufficiency, is a rare endocrine disorder where the production of glucocorticoids and mineralcorticoids are insufficient. The disease could be difficult to diagnose and the lifelong treatment involves hydrocortisone administration daily. Individuals with Addisons disease have a chronic disease where the different kinds of symptoms and the changing in pharmaceutical treatment affect their condition in daily life.
Design: A qualitative content analysis was used.
Methods: 13 individuals were interviewed during 2009.
Results: Two categories emerged from the interviews: to handle life with the disease related to ones surrounding and to handle life with the disease related to oneself. The categories are linked to a main theme dependent vs independent which reflects the limitations and strategies to manage the limitations.
Conclusion: The findings show that the individuals could have a long lasting and sometimes even dramatically experiences of onset. They contribute experiences by showing difficulties in managing the hydrocortisone medication in daily life. Their strategies of self-care are mostly based upon an autodidact approach. The individuals express need for more information concerning the adjusting of hydrocortisone medication and of self-care. They also request supplementary knowledge of Addisons disease among health professionals.
Relevance to clinical practice: The study may add new knowledge for health care providers to identifying areas of improvement in the given information to the individuals and to understand the importance of awareness of the symptoms of this rare, and sometimes even life-threatening, disease.
Keywords: Addisons disease, experiences, nursing, onset, qualitative study, self-care.