Abstract
BACKGROUND: Premature birth is associated with many medical conditions including feeding and swallowing difficulties. Despite the existing knowledge on caregivers' experiences, there is a dearth of literature that has explored experiences of caregivers whose infants have feeding difficulties in the neonatal intensive care unit (NICU) in South Africa. OBJECTIVES: This study explored experiences of caregivers of premature infants diagnosed with feeding difficulties in the NICU within the South African context. METHOD: This study was conducted using an explorative qualitative design. Data were collected using an anonymous qualitative survey distributed through caregiver social media support groups. Purposive sampling was used to recruit 9 participants. Data were analysed using inductive thematic analysis. RESULTS: Three main themes emerged, namely: (1) Emotional distress associated with infants' feeding and swallowing difficulties and prematurity, (2) infants' inability to feed orally and NICU restrictions: barriers to caregiver-infant attachment and bonding, and (3) caregiver informational needs regarding oral feeding and general child care. CONCLUSION: This study indicates the need for holistic family-centred healthcare practices within the NICU. Therefore, in addition to providing oral-sensorimotor intervention to infants with feeding and/or swallowing difficulties, speech-language therapists (SLTs) need to ensure that caregiver needs and concerns related to their child are addressed. Moreover, SLT interventions need to consider caregiver-infant attachment and bonding strategies in the absence of oral feeding.Contribution: This study highlights the need for family-centred care practices within the NICU, which considers informational needs, inclusion in oral-sensorimotor intervention, and the psychosocial needs of caregivers.