Health and family climate in families where a parent has deafblindness

Deafblindness is a unique and unusual disability, where the degree of visual impairment and hearing loss is individual and the cause varies. Deafblindness limits activity and participation in everyday life to such an extent that society must offer support, for example different forms of aids or assistance. It can be assumed that limitations in activity and participation can have an influence the parenthood as well as have an impact on the other family members' daily lives and family climate. However, there are few research studies focusing the entire family. The overall purpose of the project is to describe family situation, health and well-being in families where a parent has deafblindness.

The project has a descriptive, and to some extent comparative design. A reference group has been attached to the project with members from the Swedish Deafblind Association.

Data have been collected by individual semi-structured interviews with parents with deafblindness, parents without deafblindness and with their children. The purpose of the interviews was to identify how deafblindness is perceived to affect the daily lives of the various family members and needs of support. The participants have also filled in questionnaires; the Swedish version of EQ-5D-5L to measure health-related quality of life in adult study participants (from 18 years) and KIDSCREEN-27 for children between 8-18 year. The Swedish version of KASAM-13 has been used for adults, as well as for children from 12 years. For children aged 8-11, the child version of KASAM has been used. A questionnaire focusing Family Climate has also been used. The instrument is designed for Swedish conditions and will be used for study participants from 12 years onwards in this project.