Impact on participation and service for persons with deafblindness

Abstract: Persons with deafblindness experience difficulties in daily life and they experience service to sometimes barrier. The overall aim of this thesis is therefore to discover, evaluate and explain: 1. mechanisms that might have impact on participation restrictions for people who have visual and hearing impairment i.e. deafblindness and 2. mechanisms that might barrier service to these people. Service is used as an umbrella term for health care, education and certain service for persons with disabilities. Materials from multiple sources have been used: literature (Study I No 96 papers). Interviews (Study I and V) with 32 and 3 adults with deafblindness respectively. Questionnaires (Study II and III): answered by 33 and 34 adults and youth with deafblindness. Patient records (Study IV and V): records from 9 and 3 adult females with USH I respectively. Materials mostly retrospectively cover the period from 2005 and about 40–50 years. Both quantitative and qualitative methods were used. International Classification of Functioning, Disability and Health (ICF) were consequently used as a framework to describe as well as a tool to analyze mechanisms. Further, the Ecological approach, Disability as a laminated system and Life course approach were used in order to evaluate and explain mechanisms. The conclusions that can be drawn from an ecological, laminated and life course approach are: Participation restrictions for people with deafblindness are far-reaching and are embedded in a complex process of interaction between the person with deafblindness and the environment. Services entail systematical barriers. In order to improve service it is extremely important to understand the role of participation restrictions in deafblindness. Primary activity limitation is to not see and hear enough for comprehension. Hence, not taking part in the visible and audible world is primary participation restriction. Performing activities without basic information includes risk. One important aspect of deafblindness is exposure. Persons with deafblindness require rehabilitation in a life perspective. In order to increase people’s participation and protection requirement of individually adapted support and assistive devices is necessary. ICF and the UN convention support service alterations.