Experiences of families involving a parent with progressive deafblindness

Abstract

Usher syndrome is a progressive form of deafblindness, which can have significant psychological consequences. This study aimed to get insight in the perceived impact of Usher syndrome type 2 (USH2) on families with a parent affected by this syndrome, and in the experiences of these families with social, professional, and peer support. Participants were 10 parents with USH2 living in the Netherlands, 10 of their co-parents, and 10 of their children. The parents filled in questionnaires and participated in a semi-structured interview. A photo-elicitation interview and a semi-structured interview were administered to the children. Interviews were transcribed and systematically coded, using thematic and open coding. Parents rated the family’s quality of life in general as satisfactory. Both negative and positive consequences were described of USH2 for the family. Parents without USH2 and their children stated to provide support to the parent with USH2, which was often described as self-evident. Some parents without USH2, however, described their family tasks as a burden. Some parents also reported that psychological problems of the parent with USH2 affected the well-being of other family members. Several parents and some children expressed that the syndrome was hardly discussed within the family. Unfulfilled family support needs were mentioned, a lack of involvement of family members in the professional support, as well as a lack of professional and peer support for children and partners. This study revealed that USH2 in a parent has impact on the entire family. Family-centred approaches are recommended for professionals who support parents with Usher syndrome.