“More than medical care”: a qualitative study on family support systems in the neonatal intensive care unit in Ghana

Abstract

Background: The families of the preterm infants face a multitude of challenges during their infants’ hospitalization at the Neonatal Intensive Care Unit (NICU) in the Ghanaian context. In their vulnerable state, these families require significant support to help them cope. This study aims to explore support systems available to families of preterm infants hospitalized in the Neonatal Intensive Care Unit at a public referral hospital in the capital city of Ghana, Accra. Method: The study adopted a qualitative approach to explore the phenemenon. The inclusion criteria considered all parents above the age of 18 years who were medically fit and emotionally stable to participate in the study. The language barrier was mainly an exclusion criterion. Data were collected through in-depth interviews with purposively selected participants, and a semi-structured interview guide guided the interviews. Data collection and recruitment of participants stopped once data saturation was reached. Results: Sixteen participants whose infants were hospitalized at the NICU were interviewed. Three themes were identified: a. Healthcare worker support, b.Social support, and c. Financial support systems. Based on the nature and sources of support identified, ten subthemes were further developed from thematic areas. Conclusion: The study highlights the comprehensive and multidisciplinary approach to support systems available to families at the Neonatal Intensive Care Unit during the hospitalization of preterm babies. While healthcare workers are essential in providing medical and emotional care, contributions from families, peers, and philanthropic groups can help parents cope during difficult times. We recommend that hospitals in Ghana consider developing policies and practice guidelines such as the Child and Family Centred Care (CFCC) that prioritize communication to ensure that families receive regular updates about the infant’s condition and medical care plans regardless of the medical background of the communicator.