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.
- infectious diseases
- qualitative research
- patient perspective
- multidisciplinary team care
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Contributors SM, VG, LL, NSN and AB were involved in the conception and design of the work. SM was also involved in the acquisition of data and drafting of the work. SM, HH and AB were involved in the analysis and interpretation of data for the work.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient consent for publication Not required.
Ethics approval Ethical clearance was provided by the institutional ethics committee of the hospital. Each participant was provided with a unique identification code. Privacy and confidentiality were maintained throughout the study.
Provenance and peer review Not commissioned; externally peer reviewed.
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