Deafblindness is a distinct and rare disability. The official Nordic definition states that deafblindness is a combined vision and hearing impairment, which limits activities of a person and restrict full participation in society to such degree that society is required to facilitate specific services, environmental alterations and/or technology. Deafblindness has different etiologies, onset and course, which means that the group is very heterogeneous. National authorities argue that there is a lack of guidelines of how to provide adequate evidence based support for persons with deafblindness, and deafblind organizations have specifically pointed out that there is a need for research regarding the family situation. The project aims towards a first step to set a base for evidence based guidelines within the field of family health in deafblindness.
The aim was to explore the family situation from different perspectives, including the parent with deafblindness, the other parent and the children, in families where one parent has deafblindness. Experiences of daily life, including aspects such as strengths and need of support as well as self-reported health and family climate were explored.
Trough convenience sampling method families where one parent had deafblindness was recruited. They were asked to answer questionnaires measuring quality of life, sense of coherence and family climate. Swedish version of questionnaires were used and version for children. Further the families were asked to participate in individual qualitative interviews. In all 14 parents with deafblindness, 6 partners and 18 children between 6-18 years were included. The members in the family had to be living together for at least 50% of the time.
At the presentation preliminary results from the questionnaires concerning quality of life, sense of coherence and family climate from the participants will be presented. Results will be presented at group level. Preliminary results indicate that the participants report poor quality of life, low sense of coherence. For the family climate questionnaire it is a mixed picture that appears indicating both closeness and distance. Comparison between the different perspectives, parent with deafblindness, the other parent and children will be discussed at the presentation.
2018.