A SCOPING REVIEW INTO THE CONSEQUENCES OF USHER SYNDROME FOR THE QUALITY OF LIFE
Marina Arcous e.a. did a scoping review concerning the consequences of the progression of the deterioration of the senses for the quality of the lives of people suffering from Usher Syndrome.
People suffering from Usher Syndrome are born hard of hearing or deaf and blindness develops in the course of the years. With a part of the people suffering from Usher Syndrome type 2 the loss of hearing is progressive as well. This progressive loss forces people suffering from Usher Syndrome to restructure their lives and their relationships. They have to create new strategies in order to
- keep communicating,
- get access to information
- find their ways in the (living) environment or within a certain space.
This reorganisation of daily life demands a lot from the person suffering from Usher Syndrome and this can put life under heavy pressure.
The researchers have done a scoping review by holding interviews within the target group and a literature study.
The findings suggest that people suffering from Usher Syndrome:
- seem to adjust their ways of living to their situations,
- keep hope for the future
- believe in their own abilities to reach their goals, in spite of the various difficulties they are confronted with.
The researchers emphasise that there is a lack of:
- research into adjustments and strategies,
- knowledge about integration of the syndrome in the self-image
- knowledge about relationships with caretakers
- specific knowledge of psychotherapeutic support
More information about these subjects could improve the social, psychotherapeutical and medical guidance.