Experiences of service and diagnosis among immigrant families of young children with suspected or diagnosed developmental disabilities.

Abstract

OBJECTIVES While early diagnosis is fundamental to the development of children with developmental disabilities (DD), limited attention has been paid to immigrant parents' experience of early encounters with systems when they begin seeking supports for their children with DD. This study aimed to contribute to better understanding of immigrant parents' experiences of early encounters with services for families and children with suspected or diagnosed DD. DESIGN A longitudinal, qualitative approach was adopted. Over 12 months, multiple interviews were conducted with four immigrant families with children aged between two and four years who were attending a mobile playgroup offering early learning supports for children with suspected or diagnosed DD in communities with low access to formal supports. During the first three months of the study, families were accompanied by the first author on weekly visits to the playgroup. Participant observations and informal discussions with staff delivering early intervention supports via the playgroup provided further insight into families' initial and on-going encounters with services and supports. During the remaining nine months, multiple interviews were conducted with participating families, to document their on-going experiences and encounters with medical practitioners and therapists. RESULTS Thematic analysis of data generated four key themes: Initial encounters with medical professionals, Confusion and 'missed' diagnosis, Gaps in understanding, collaboration and communication, and Families' desire to learn and implement strategies. CONCLUSION Families made concerted efforts to locate appropriate supports. They also faced barriers including a lack of openness and genuine consultation, particularly in their encounters with health professionals. These barriers resulted in a level of mistrust and detachment from formalised supports. Results highlight the critical importance for health professionals of 'tuning into' family concerns through relationship-based approaches, in order to establish shared understanding and mutual respect between professionals and families, particularly for immigrant families seeking support for their young children.