Experiences of mothers of extremely preterm infants after hospital discharge.

PURPOSE: The purpose of this study was to describe and understand the experiences of mothers of extremely preterm infants during the first twelve months at home following discharge from a neonatal intensive care unit.

DESIGN AND METHODS: A qualitative, interpretative approach using Gadamer's philosophical hermeneutics was carried out. One focus group and fifteen in-depth, semi-structured interviews were conducted twelve months after hospital discharge. Responses were recorded, transcribed and analyzed using computer-assisted qualitative data analysis.

RESULTS: The study´s participants were twenty women. The following themes emerged from the data analysis: 1) 'The journey home: the discharge process', which included the sub-themes 'escaping the hospital environment: between desire and fear' and 'preparing parents for hospital discharge: practice and formal support'; and 2) 'The difficulty of living with an extremely preterm infant', including the sub-themes 'the challenge of an unexpected form of childcare', 'overprotection of and bond with a child with special needs' and 'disturbance in the social/familiar setting: when a mother becomes a nurse'.

CONCLUSIONS: The process of hospital discharge and the first months at home are difficult. The birth and care of an extremely preterm infant affect the mothers' quality of life as well as their family and social life. Practice and early discharge programmes can make the discharge process easier.

PRACTICE IMPLICATIONS: The knowledge and understanding of the experience of mothers of extremely preterm infants in the first months at home after hospital discharge could help healthcare professionals to develop educational strategies and counselling interventions in accordance with the mothers' needs.