In research, people with deafblindness are often described as vulnerable and in need of help. In a Swedish study, however, the authors highlight how deafblind people actively take action and use a variety of coping strategies in their daily lives.

Interview and results from the study

The researchers interviewed 14 people with Usher syndrome type 2A, aged 20-64 years. The participants had moderate to severe hearing loss and varying degrees of progressive visual loss.

The results showed that the participants used a variety of coping strategies in everyday life:

• Staying active
  Maintain activity, work, movement, social contact, and physical activity. When this became difficult or energy-consuming, they adjusted the pace, the surroundings, the work tasks, or the activity itself.
• Using assistive devices
  The use of various assistive devices contributed to increased independence and participation. Some experienced stigma associated with visible assistive devices.
• Accepting support
  Participants used both formal support from healthcare professionals, rehabilitation services, companions and interpreters, and informal support from family, friends and other people with Usher. The support could increase safety and independence, but could also be perceived as a reminder of lost function and dependence.
• Valuing the present moment
  Many tried to concentrate on what they could do here and now, rather than letting the fear of future loss dominate. Meaningful activities, work, family, friends, music, reading, exercise, and small everyday pleasures were of great importance.
• Maintaining a positive self-image
  The participants wanted to preserve their identity as whole people – not just be defined by Usher syndrome or deafblindness. They worked to maintain self-respect, claim their own rights, and find a balance between independence and the need for help.
• Reducing emotional pain
  Humor, distance from difficult thoughts, disconnection, hope, and certain forms of avoidance were used to cope with grief, frustration, and uncertainty.

People with deafblindness show resilience and creativity

The study challenges the image of people with deafblindness as solely vulnerable. Instead, the authors find that people with deafblindness can demonstrate significant resilience and creativity in the face of practical, social, and emotional challenges.

_{«The study demonstrates that people with USH2a manage in many ways, and metahporically, by `taking the helm`, they strive to actively navigate towards their own chosen values» (Ehn mfl. 2019)}

What does this mean for rehabilitation?

According to the authors, rehabilitation should include, among other things:

• Conversations about how the participants’ own resources and strategies can support rehabilitation
• Early and individually tailored follow-up.
• Psychological support
• Access to technical aids and training in their use

The study supports the course offerings at EIkholt

The results of the study support Eikholt their services and course offerings. In line with the recommendations of the researchers, Eikholt they are committed to not only focusing on functional impairments and problems, but also on the person’s resources, values, own coping strategies, and participation in society.

Want to read more?

The study can be read in its entirety here: Life strategies of people with deafblindness due to Usher syndrome type 2a – a qualitative study – PubMed

Source: Mattias Ehn, Agneta Anderzén-Carlsson, Claes Möller and Moa Wahlqvist
Published: International Journal of Qualitative Studies on Health and Well-being, 2019
DOI: 10.1080/17482631.2019.1656790

To create a Norwegian summary of the research article, we have used artificial intelligence (AI) in the writing process. The original article (Ehn et al. 2019) has been checked for quality to ensure the content is correct.

Do you have any questions about the study?

Contact Andrè Vågan: andre.vaagan@eikholt.no