"On the journey with us” – Caregivers’ experiences of intervention following early screening for adverse neurodevelopmental outcomes: A narrative inquiry

Abstract

Background Babies born prematurely, at low birth weight and those requiring neonatal support are more likely to develop a childhood-onset disability. These babies require developmental screening to identify those at higher risk of adverse neurodevelopmental outcomes, such as Cerebral Palsy (CP). Screening ensures these infants receive early, targeted interventions from a range of therapy professionals during the critical window of the first 2 years, when the brain is rapidly developing, mitigating the functional impacts of early brain injury. Waikato Hospital implemented an early detection programme in 2017, aligning with international best practice guidelines. Caregivers’ experiences of this service and engagement in early intervention (EI) had not been evaluated prior to this study.

Objective This study explored the experiences of parents, caregivers and whānau of EI services following positive screening for adverse neurodevelopmental outcomes in infants born preterm or with health complications during the first 2 years of life in the Waikato region, Aotearoa New Zealand.

Participants The 13 participants were parents, caregivers and whānau of infants who had received early screening and were identified as having a higher likelihood of adverse neurodevelopmental outcomes; therefore, they received EI within the Waikato. These whānau represented 9 children with developmental outcomes that were both CP and non-CP, ambulatory and non-ambulatory.

Methods This qualitative study used a narrative inquiry methodology, informed by Dewey’s (1938/1997) theory of experience. In-depth semi-structured interviews were conducted with individuals, parent dyads and whānau groups, using the strengths-based model, Te Whare Tapa Whā. The researcher restoryed the interviews as narrative summaries, which were member-checked by the participants as a co- constructing process. Analysis examined the narratives individually to identify initial threads, followed by Braun and Clarke’s reflexive thematic analysis to identify threads across all participants, attending to temporality, sociality and place. The overarching thread was “On the journey with us”, along with three minor threads: uncertain beginnings, “we lacked nothing” and it takes time, with these being supported by eight sub-threads.

Conclusion Common to all parents and caregivers was the importance of the nuanced, evolving relational needs required to holistically support them through the first 2 years. Parents experienced deficit-based discourses while being provided prognostic information in the NICU, which had long-lasting consequences. The lack of neonatal therapy services and inconsistencies in service delivery during the early discharge period likely contributed to the uncertainty experienced. Parents and caregivers valued the collaborative, non-judgmental therapeutic relationships they formed with the therapy team, in which therapists served as key workers. Coaching therapy practices, provided by skillful and knowledgeable therapists, built participants’ autonomy and capacity, but only when they understood what therapy was for.

Participants explored the ‘spaces’ where therapy took place, including clinics, homes, virtual settings and early childhood centres. Home-based therapy offered many benefits and provided equitable services to rural and Māori families. However, participants also experienced vulnerability during home visits, particularly in the early days. This constitutes an important new finding that ‘spaces’ where therapy takes place require careful consideration by service providers, highlighting the need for an individualised, flexible and nuanced approach to EI services. This emergent finding offers insight into why families may decline services, highlighting a knowledge gap that warrants further research.