Living an ordinary life – yet not: the everyday life of children and adolescents living with a parent with deafblindness

Abstract

Introduction The family life of people living with one family member with deafblindness has been sparsely described. Purpose The aim of the study was to explore how children experience their everyday family life when having a parent with deafblindness. Methods An explorative study in which data have been collected by qualitative interviews of children. Qualitative content analysis has been used for analysing the data. Results Overall theme; Living an ordinary life—yet not, is based on four categories with subcategories. A family like any other describes: Having the same family life as their friends, Acting like other children and It is what it is. Different everyday life describes: Acknowledging differences, Adjusting to the parent’s needs and Financial strain. Being there for the parent describes: Helping the parent and Protecting the parent from harm. Being emotionally affected describes: Feelings of frustration, Feelings of compassion and Need for support. Conclusion Children as relatives of parents with deafblindness have been given a voice. The children live an ordinary life, but at the same time a different ordinary life. Professionals need to take the child and their needs into account when support is given.

Keywords

• child as a relative
• deafblindness
• everyday life
• parent
• participation