Abstract
Objective: In Aotearoa New Zealand, when children with motor neurodevelopmental disabilities transition to school, developmental therapy funding changes from the Ministry of Health, usually delivered through Child Development Services, to the Ministry of Education provided within school settings. The two funding models also use very different delivery models with Health funded services providing therapy direct to families, while Education funded services are provided direct to teachers. There has been little research within New Zealand exploring how parents of children with disabilities experience this transition, and whether the Child Development Service care model has adequately prepared parents to navigate this change in service delivery. This research explored parents’ experiences of transitioning from Health funded services provided by Child Development Service’s to education funded services provided in schools.
Methodology: This Master’s thesis included two phases: A scoping review (phase one), followed by a qualitative study (phase two) drawing on Braun and Clarke (2022) reflexive thematic analysis method. Using the Joanna Briggs Institute (JBI) guidance for scoping reviews (Peters et al., 2020) and PRISMA-ScR guidelines (Tricco et al., 2018), a scoping review of the parental experiences of children with motor neurodevelopmental disability of the transition from early intervention to education-based therapy was carried out to map the available literature. Online individual semi-structured interviews were then undertaken with data analysed using reflexive thematic analysis.
Results: The scoping review of eight studies identified that parents experienced a sense of loss in their contact with therapists and services for their child, alongside a change in their own role within their child’s therapy during the transition from early intervention to education-based therapy. Improved experiences of the transition were associated with good communication and collaboration based around family centred principles.
In phase two, eight mothers of children with motor neurodevelopmental disability (four of whom identified as Māori) were interviewed over eight hours. Five major themes and seven subthemes arose from the interview data: (1) “None of us seemed prepared” (2) “Letting go of control” with the two subthemes ‘Learning to trust’ and ‘A burden relieved’ (3) “It’s hard to have a voice” with the three subthemes ‘False choices’, ‘Would someone listen?’ and ‘Learning to be a strategic advocate’ (4) “Relationships matter but some more than others” with the subthemes ‘One key angel’ and ‘Who the hell is this lady?’ and (5) “It works when it’s about the child.” Themes reflected parents’ experiences of the transition period and their perceptions on the factors (both intrinsic and extrinsic) which impacted on their child’s transition between services.
Findings demonstrate that for parents the transition from early intervention to school was an uncertain and chaotic time for which they felt ill-prepared. Parents reported considerable differences between the structure and supports available within early intervention and education-based therapy and noted that successful transition relied on parents’ own skills and capacity to navigate the changes. These parental experiences can be used to improve the way that therapists within Child Development Services prepare whānau for this change in service delivery to ensure children with motor neurodevelopmental disabilities have the best developmental outcomes.
Discussion: This study found that mothers experienced a range of emotions during their children's transition, including frustration and anger from feeling unheard and the need to advocate, to relief at no longer having to act as their child's therapist. This relief, unique within the New Zealand context, highlights the burdens placed on parents by therapist expectations. The study suggests that future research on therapy provision in New Zealand is needed to reduce these burdens. A major concern was the mothers' unpreparedness for the change in service delivery, indicating a need to improve the way information about future services is communicated. Providing a key support person or allowing a family’s current CDS therapist to continue into the first year of schooling could mitigate the impact of multiple changes. The consultative therapy model offered by the Ministry of Education also requires review to ensure it supports inclusion and meets the obligations of Te Tiriti o Waitangi for Māori children and their whānau. Despite many negative experiences, some parents reported successful transitions facilitated by individual supportive people rather than the process itself.