Parents as carers on a neonatal unit: qualitative study of parental and staff perceptions in a low-income setting
Abstract Background. To determine parents’ experiences on a neonatal unit in a low-income country, how they and staff perceive the role of parents and if parent’s role as primary carers could be extended. Methods. Qualitative analysis using semi-structured interviews with 12 parents and 16 staff. Results. Parental themes were around their general impression, stress and discharge. They were satisfied with their baby’s care but feared their baby may die. Mothers were stressed from need to remain in the hospital throughout baby’s stay, to provide feeds day and night, comfort and clean their baby, and provide constant kangaroo mother care before discharge. They experienced loneliness from lack of visitors, difficulty finding food and somewhere to sleep, financial worries and concern about family and home. Mothers were desperate to be discharged. Staff were preoccupied with shortage of nurses limiting care provision and restricting their ability to educate parents as inpatients and after discharge and to provide follow-up, and their constant presence. Neither thought parent’s role could be extended. Conclusion. Staff and parent perceptions on improving parent’s experience differed. Staff thought that the solution was increasing nurse numbers to improve care and educate parents, but is unlikely in near future. Parents were severely stressed by psychosocial concerns and practical issues around hospitalization. Our identification of parental concerns suggests greatest potential for improving their stay on the neonatal unit may be from psychosocial support, potentially from experienced mothers, mothers’ groups, allied health professionals and community health workers and from improved facilities, particularly providing food and accommodation.