The Journey to Early Identification and Intervention for Children with Disabilities in Fiji

Abstract

Early identification of developmental delay or disability and access to early intervention improves outcomes for children with disabilities and their families. However, in many low- and middle-income countries, services and systems to enable timely, co-ordinated care and support are lacking. The aim of this research was to explore the experiences of families of children with developmental disabilities in Fiji in accessing services for intervention and support across sectors. This qualitative study involved conducting interviews with caregivers of children with disabilities (n = 12), and relevant key stakeholders from health, education, disability, and social support sectors (n = 17). We used journey maps to identify key stages of the families' journeys, identify key barriers and enablers at each stage, and provide multi-sectoral recommendations for each stage. Enablers include proactive help seeking behaviours, the use of informal support networks and an increasingly supportive policy environment. Barriers to identification include a lack of awareness of developmental disabilities and the benefits of early intervention among service providers and the community. A lack of service availability and capacity, workforce issues, family financial constraints and a lack of collaboration between sectors were barriers to intervention once needs were identified, resulting in significant unmet needs and impacting inclusion and participation for children with disabilities. Overcoming these challenges requires a multi-sectoral approach.

Keywords: Fiji; caregivers; children with disability; coordination of care; developmental disability; early childhood intervention; journey mapping; low- and middle-income country (LMIC).

Figure 1

Key journey stages.

Figure 2

Journey of a child with risk factors/developmental condition identified at birth. Lani is a 3-year-old girl who lives with her parents and baby brother in Suva, the capital city. Lani has Down Syndrome. She started walking about 6 months ago and she is saying single words and using gesture to communicate. She can feed herself and is starting to learn toilet training. She loves playing with her little brother.

Figure 3

Journey of a child without any risk factors/developmental conditions identified at birth. Josefa is a 12-year-old boy living in Serua (rural area). He is the eldest of 5 siblings. He has cerebral palsy and epilepsy. He has weakness in his left arm and leg and his speech is difficult to understand. He is not yet fully continent and needs help with getting dressed. He likes to play with the soccer ball.

Figure 4

Journey of a child from a remote island community (adapted from [25]). Felipe is a 6-year-old boy who lives in a remote village on Kadavu Island with his mother and maternal grandparents. He has a history of motor and speech delays, feeding difficulties and some challenging behaviours. He loves listening to music.