Caregiver experiences of oral feeding in infants on long-term high flow nasal cannula support.

Purpose: Navigating the feeding journey of medically complex infants on long-term high flow nasal cannula support can be challenging for caregivers, especially given inconsistencies in clinical practice for oral feeding on high flow nasal cannula support. The aim of this study was to explore the perspectives of caregivers who have experienced this journey, to inform best practice care.

Method: This study used a generic qualitative inquiry approach. Semi-structured interviews were conducted with seven caregivers of children who had been on long-term high flow nasal cannula support as infants during 2021. Reflexive thematic analysis was used to generate meaning-united stories.

Result: All caregivers reported oral feeding difficulties that persisted beyond hospitalisation, resulting in demanding mental loads and care arrangements. Caregivers described how these difficulties were often exacerbated by complex medical needs and the strategies they experimented with to support oral feeding. Caregiver's experiences in the healthcare system were characterised by inconsistencies in care pathways and variable access to specialist feeding services. The importance of a collaborative relationship with healthcare professionals and a conducive hospital environment were also highlighted.

Conclusion: The oral feeding journey for families with infants on long-term high flow nasal cannula support was characterised by multifaceted challenges and implications. Further research is required to establish and provide consistent, family-centred, and evidence-based care for this population.