Psychosocial Research News
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How do you cope with living with Usher syndrome? What strategies do you use to overcome challenges? In this USH Talk, Dr. Moa Wahlqvist summarizes the findings from the first qualitative scientific study of its kind, exploring the strategies described by 14 people with Usher syndrome type 2 seeking to remain active agents in their own lives.
Currently, there are no studies on life strategies in people with Usher syndrome and people with deafblindness are often described in terms of poor health and low quality of life. From a clinical standpoint, it is important to balance this picture with an increased knowledge of life strategies. Fourteen people between the ages of 20 to 64 years with USH2A in Sweden participated in focus group interviews, which were transcribed and analyzed by qualitative content analysis. The findings show that people with USH2A have a variety of life strategies that can be interpreted as highlighting different aspects of psychological flexibility in a life adjustment process. The study demonstrates that people with USH2A manage in many ways, and metaphorically, by “taking the helm,” they strive to actively navigate towards their own chosen values.
What this means for Usher syndrome: More studies like the one described here will help Usher patients to look for strategies to cope with this disease and improve their quality of life.
Dr Liz Ellis and Dr Liz Hodges.
This research report, funded by Sense, presents the lives of people with Usher syndrome, showing the impact of the diagnosis on their experiences; education, communication, employment, friends and family, mobility – across all areas of their lives. This report aimed to explore the questions: What do people with Usher think about having Usher syndrome? What is the effect of change on the lives of people with Usher? What do people with Usher remember of their diagnosis and what impact did it have on them?
Berth Danermark, Claes Moller, Kerstin Moller, Moa Wahlqvist.
The objectives of the study reported here were to describe the physical and psychological health of persons with Usher syndrome Type II (USH2) and to explore any differences in terms of gender.
Danish research by Ph.D. Jesper Dammeyer, in cooperation with educational consultant Bente Ramsing, shows that more than half of all children with Usher Syndrome develop symptoms of psychosocial dissatisfaction before the age of 18.
There have been studies done on the mental health of adults with Usher, but few on children with Usher. This study looked at 26 children in Denmark and investigated the frequency of mental and behavioral issues among the group. Published 27 March 2012.
By Ilene Miner, CSW and Joe Cioffi, M. Ed. Published by Helen Keller National Center, this study looks at early intervention or involvement of the person with the disability in the process of problem solving, introducing role models, and encouraging the student to take care of him or herself and make independent decisions, which is rarely implemented in work with children, youth, and young adults with Usher syndrome.