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.

Development of core sets for deafblindness: an international expert survey on functioning and disability of individuals living with deafblindness using the International Classification of Functioning, Disability, and Health

“…The reality of this situation is complex and varied, as its intricacies have been described, for example, in the context of the dynamics of families with a deafblind parent. 30 Even though our data set includes the perspectives of 19 intervenors, none of these professionals were based in the Global South, pointing at education, training and service delivery needs in underfunded regions of the world.…”

Peer Victimization and Psychosocial Adjustment among Children of Parents with Physical Disabilities in China: A Comparative Study

“…Thus, the children of parents with disabilities face the risk of being neglected, which may curb their developmental trajectory (Aunos et al, 2008; He, Yan, Zhang, Wang, et al, 2020; Wade et al, 2015). Several studies have underscored vulnerabilities in parents and children with physical and mental disabilities (e.g., financial strain, inadequate services from child welfare system, difficulties in social interaction) (Duvdevany et al, 2007; Haker et al, 2022; Huus et al, 2022; Powell et al, 2022). However, evidence on mental health issues experienced by children of parents with disabilities remains limited in the Chinese context.…”

Ordinary Life

“…Support from others may seek to redress this, but the resultant 'ordinary life' may be quite different from that experienced by others in society (Huus et al, 2022).…”

“…Brannelly et al (2019) observes that the diminishment of choices and opportunities may move ordinariness, and thus meaningful life activities, beyond their reach. Support from others may seek to redress this, but the resultant ‘ordinary life’ may be quite different from that experienced by others in society (Huus et al, 2022).…”