The care of preterm infants is associated with stress. In the busy neonatal unit where highly skilled healthcare workers are always present, parents have reported being stressed when caring for their preterm infants in the neonatal unit. In Ghana, preterm birth is the highest cause of neonatal mortality with 70% of these morbidities and mortalities occurring in the community. Yet to date, no study in Ghana has explored how parents experience their care giving role after discharge from the neonatal unit into the community.
This study explored the experiences of caring for preterm infants in the neonatal unit and after discharge from the perspective of parents. Narrative inquiry methodology was utilised as it explores lived experiences using stories as data. In all, 42 participant carers (mothers, fathers and significant others) of preterm infants discharged from one of four neonatal intensive care units in Ghana were interviewed at three different stages - one week, one month and four months after discharge. Data were collected from February to June, 2015 in the residences of parents. Interviews were conducted face-to-face and audio-recorded. As Ghanaians live communally, members of households were also engaged in informal conversation to explore their experiences of caring for preterm infants after discharge. In addition to this, participants were observed in their natural environment as they cared for the preterm infant in the community.
Results of the study suggest that in the neonatal units and after discharge, parents have concerns caring for their preterm infants. The findings suggest that after discharge, grandmothers of preterm infants who were not involved in pre-discharge education in the neonatal unit take charge of the care of preterm infants in the community. Grandmothers diagnose preterm infants’ illnesses and decide whether to refer an infant to hospital or herbalist for treatment. Cultural practices mainly initiated by grandmothers resulted in adverse health problems for preterm infants and disruption in parents’ mental health. The current study also revealed that in the neonatal unit, fathers were excluded from caring for their preterm infants, making them less confident to assume the caring role after discharge. This study has deepened our understanding of some of the challenges parents of preterm infants face in the neonatal unit and after discharge as they assume full responsibility of caring for their preterm infants in the Ghanaian community without any formal support from healthcare workers.
It is recommended that healthcare workers should identify the support persons of parents and involve them in the care of preterm infants while on admission in the neonatal unit and during pre-discharge education. In addition to this, the study recommends that healthcare workers place regular mobile phone calls to parents of discharged preterm infants to discuss areas of concerns about the care of the preterm infant in the community in order to provide evidence based support.