Life strategies of people with deafblindness due to Usher syndrome type 2a - a qualitative study

Abstract

Purpose: To explore life strategies in people with Usher syndrome type 2a. Background: There are no studies on life strategies in people with Usher syndrome. People with deafblindness are often described in terms of poor health and low quality of life, or as being vulnerable. From a clinical point of view, it is of importance to balance this picture, with an increased knowledge of life strategies. Methods: The study had a qualitative explorative design. Fourteen people aged 20-64 years (4 women, 10 men) with USH2a in Sweden participated in focus group interviews, which were transcribed and analysed by qualitative content analysis. Results: The content analysis resulted in seven categories; remaining active, using devices, using support, sharing knowledge, appreciating the present, maintaining a positive image and alleviating emotional pain. Two sub-themes: resolve or prevent challenges and comforting oneself was abstracted forming a theme "being at the helm". Conclusion: 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.

Health-Related Quality of Life, Family Climate and Sense of Coherence of Families in Which a Parent Has Deafblindness

“…A review of existing research on determinants that are associated with the quality of life of people with deafblindness due to Usher syndrome has found that the adjustment of living habits, maintaining hope for the future and a belief in one's own capacity to accomplish goals are important in maintaining a good quality of life (Arcous et al, 2019). Being an active agent in one's own life has also been identified when having to adopt to new situations due to a USH, which is a disease with a progressive course (Ehn et al, 2019). Furthermore, social participation and inclusion have been reported as having a positive impact on the health-related quality of life for persons with deafblindness (Dean et al, 2017).…”

Similarities and Differences in Health, Social Trust, and Financial Situation in People With Usher Syndrome, a Bio-Psychosocial Perspective

“…Social support has been described as a variable that affects the psychological health for persons with USH positively ( Dean et al, 2017 ). To have strategies to concur difficulties when they occur ( Ehn et al, 2019 ) has also been described as positive as well as remaining active through work ( Ehn et al, 2016 , 2018 ) or by other engagements ( Ehn et al, 2019 ). Still, variables affecting the health of people with USH need to be studied from a life course, bio-psychosocial perspective to reveal possible interaction effects and consequences ( Arcous et al, 2019 ).…”

“…If unknown, then support and rehabilitation efforts might have limited effects. People with USH also report, spending much effort in explaining their life situation to professionals and others ( Ehn et al, 2019 ).…”

“…The participants perceived less formal support than they wanted, and much of the support provided was practical help in terms of activities of daily living. To receive informal and formal support was discussed by participants in a study by Ehn et al (2019) , where the participants when talking about the informal support from families and friends described that it was a support that they could always rely on. However, to get informal support was not always easy in terms of being intrusive or feelings of lost independence.…”

“…A bio-psychosocial study on deafblindness reported the presence of a fragmented healthcare that was time consuming regarding trying to contact healthcare and welfare, booking interpreters or transportation, and waiting for responses ( Möller K., 2003 ). Lack of knowledge about the consequences of deafblindness was described by Ehn et al (2019) when describing formal support from professionals. Another study showed that women with USH1 described their contact with low vision clinics and ophthalmology departments as substantially insufficient, uncoordinated and unable to meet their needs ( Möller et al, 2009 ).…”