LIFE STRATEGIES OF PEOPLE SUFFERING FROM USH 2A – A STUDY INTO THE QUALITY OF LIFE
Claes Möller & Moa Wahlqvist and their team did a study into the strategies that people suffering from Usher Syndrome type 2A apply in order to be able to cope with Usher and its consequences.
There are no studies into the life strategies of people suffering from Usher Syndrome. In literature people suffering from deafblindness are often described as being vulnerable. They would have a low quality of life and be in less good health because of the psycho-social consequences of Usher Syndrome.
Therefore, in the guidance of people suffering from Usher Syndrome it is really important to have more knowledge about the strategies that people apply themselves to (learn how to) cope with Usher Syndrome.
The study was a preliminary study conducted in Sweden in which 14 people between 20 to 64 years old (4 women, 10 men) suffering from USH 2A participated in interviews in focus groups.
The analysis resulted in seven categories:
- stay active,
- make use of aids,
- ask for support,
- share knowledge,
- live in the present,
- maintain a positive self-image,
- relieve emotional pain.
- solve or prevent challenges
- put your mind at rest
were abstracted to one theme ‘be in control’.
The results of this study show that people suffering from USH 2A have different life strategies to take up deafblindness-related challenges with a high level of psychological flexibility. This is in contradiction to the general description that deafblind people would be vulnerable. The results show that the participants by ‘being in control’ are dedicated representatives in the process of aiming at living active lives in line with their own values.