Parents as carers on a neonatal unit: Qualitative study of parental and staff perceptions in a low-income setting

Aim To determine parents' experiences on a neonatal unit in a low-income country, how they and staff perceive the role of parents and if parents' role as primary carers could be extended. Background: A busy, rural district hospital in Rwanda. Rwandan neonatal mortality is falling, but achieving Sustainable Development Goal target is hampered by trained staff shortage. Methods: Qualitative thematic content analysis of semi-structured interviews with 12 parents and 16 staff. Results: Parental concerns were around their baby's survival, stress and discharge. They were satisfied with their baby's care but feared their baby may die. Mothers described stress from remaining in hospital throughout baby's stay, providing all non-technical care including tube or breast feeds day and night, followed by kangaroo mother care until discharge. They expressed loneliness from lack of visitors, difficulty finding food and somewhere to sleep, financial worries, concern about family at home, and were desperate to be discharged. Staff focused on shortage of nurses limiting technical care, ability to educate parents and provide follow-up. Neither groups thought parents' role could be extended. Conclusion: Staff, including senior management, were mainly focused on increasing nursing numbers. Parents' concerns were psychosocial and about coping emotionally with their baby's care and practical concerns about inpatient facilities, particularly lack of food and accommodation and absence from home. Staff preoccupation with nurse numbers made them concentrate on medical care, but parental issues identified are more likely to be provided by experienced mothers, allied health professionals, mothers' groups or community health workers.