"Giving voice": Evaluation of an integrated telehealth community care model by parents/guardians of children diagnosed with fetal alcohol spectrum disorder in Manitoba

Abstract

Background: In 2000, Manitoba began utilizing telehealth services for the assessment, diagnosis and follow-up of fetal alcohol spectrum disorders (FASDs). Since that time, the use of telehealth in Manitoba has expanded to the delivery of education and support to families caring for children with FASD in rural and remote areas of the province. The purpose of this study was to expand on a previous evaluation through a focus on the participant experience. Our objectives were thus to explore the experience of families with the telehealth process and to examine the use of telehealth in diagnostic assessment as well as follow-up post-clinical assessment.

Materials and methods: Sixteen semistructured interviews were conducted with families who had participated in at least one diagnostic assessment and/or individual or group follow-up via telehealth offered through the Manitoba FASD Centre.

Results: The majority of participants reported being happy with their experience(s) using telehealth for assessment, diagnosis, and/or follow-up support. Two general themes emerged from the data. The first theme is focused on the value of telehealth use for families with children living with FASD, whereas the second theme presents various needs of this client group.

Conclusions: This study provides support for the use of telehealth as an effective technology beyond diagnosis for individuals with FASD and their families. Families support the utilization of this technology and, despite its minor shortcomings, appreciate the flexibility of telehealth, which allows them to remain in their home communities, connected to their families and support systems.