OBJECTIVE: To explore stressors and support system for families with a neonate admitted with a systemic infection.
DESIGN: Qualitative study using in-depth interviews (IDIs), based on principles of grounded theory.
SETTING: A busy level III neonatal unit of a tertiary care teaching hospital in coastal Karnataka, India, between May 2018 and January 2019.
PARTICIPANTS: Parents and accompanying attendants of neonates admitted to the neonatal unit with one or more systemic infections.
METHODS: Using purposive sampling, semi-structured IDIs were audio recorded, transcribed verbatim and a thematic analysis was performed.
RESULTS: Thirty-eight participants were interviewed, lasting between 30 and 59 min. Babies' hospitalisation with sepsis was an unprecedented, sudden and overwhelming event. Stressors related to uncertainties due to the information gap inherent to the nature of illness, cultural rituals, financial constraints, barriers to bonding and others. Parents reported experiencing insomnia, gastric disturbances and fatigue. Support (emotional and/or financial) was sought from families and friends, peers, staff and religion. Availability and preference of emotional support system differed for mothers and fathers. In our context, families, peers and religion were of particular importance for reinforcing the available support system. Participant responses were shaped by clinical, cultural, financial, religious and health service contexts.
CONCLUSION: Designing a family-centred care in our context needs consideration of stressors that extend beyond the immediate neonatal intensive care unit environment and interactions. Understanding the influence of the nature of illness, financial, familial and cultural contexts helps identify the families who are particularly vulnerable to stress.