Migrant families with disabled children: Parent perspectives

Abstract

This qualitative study focused on the daily lives, reflections and experiences of migrant
families (first generation) who had disabled children. Twelve families who had altogether
16 disabled children participated in the study. The children were of age 2–17, seven were
in preschool, eight in elementary or middle school and one in secondary school. Most of
the children had autism spectrum disorder, often combined with intellectual impairment
or other health-related conditions. Five families were single-parent and seven twoparent
families of diverse countries of origin in Southern and Eastern Europe, Central
America and Asia, with families from Eastern Europe in majority. Data were gathered
through semi-structured interviews and participant observations. The interviews were
conducted in Icelandic, English or with the help of a professional interpreter, in line with
the wishes of parents.
The families in this study were not a homogeneous group with respect to language abilities
and other characteristics. Some had lived in Iceland for a long time and had formed
social networks either within their ethnic community or within the larger, Icelandic
society. Other families did not have these networks. Comparison with the opportunities
available in their country of origin was essential when people described their lives.
Although parents talked about strenuous days, hard work and the struggle of combining
roles in employment with care of their children, most of them nevertheless appreciated
living in Iceland, compared with what the situation would be in their country of origin.
Parents received various types of social, educational and health services for their
children. In general, they were pleased with the services provided, particularly those
received during the preschool years. In contrast, the transition to elementary school was
often demanding and, overall, parents of children of elementary and middle school age
held more mixed views about their experiences of services. A range of barriers related
to accessing information about their entitlement to support and services was described.
Typically parents had not known where to look for information, whom to ask or what
to ask about. Intensifying the challenges were problems connected to language and
communication which influenced parent’s ability to receive and understand information
about their child’s impairment and about the welfare system. Much of the information
was only available in Icelandic.
Overall, the migrant parents faced many of the same challenges described among
Icelandic families of disabled children. Nevertheless, these families typically reported a
greater extent of challenges in juggling and balancing work and family care than seen
among families of Icelandic origin. There were, however, notable exceptions as a few
families were overall content with their living situation and economically well off. Typically,
these families had stayed in Iceland for a long time, had formed supportive networks,
spoke Icelandic relatively well, knew the system and strongly appreciated what they could
get here in comparison with their country of origin. Drawing upon their cultural capital, these families had managed to build social and economic capital, using citizenship and knowledge gained from having stayed in Iceland for a long time.

It is important that the service system accommodate the diverse needs of migrant
families with disabled children, by showing more flexibility and providing better channels
to facilitate communication.