"Not Thinking that This Means the End When You Are Seriously Ill but Doing Something Positive about It"-A Qualitative Study of Living with a Life-Changing Disease

Diseases. 2019 Sep 11;7(3):53. doi: 10.3390/diseases7030053.

Abstract

Background: Chronic diseases have an impact on and can change the lives of the persons affected by them. This study examines how a disease can influence patients' daily lives, the strategies they adopt to cope, and their experiences of support. The study focuses on four chronic diseases: asthma-allergy, cancer, diabetes mellitus, and inflammatory rheumatic arthritis.

Methods: The study has a qualitative design and includes 41 transcribed in-depth interviews and a content analysis.

Results: The participants' new life situation was changed for a very long time or forever, and this was not a voluntary choice. The new life situation comprised the following themes: life-changing-the disease could be a turning point in a negative or positive way, strategies-designed to create ways of coping with daily tasks to find a good quality of life, and support-that could be obtained from the participants' private network or the healthcare professionals.

Conclusions: The patients had to make changes in their daily life, and these could bring about different feelings and restrict activity. Healthcare professionals need more knowledge of the process of coping with such life-changing matters and what could strengthen patients and give a sense of empowerment in their lives.

Keywords: chronic disease; life-changing; strategies; support; turning point.