Parents’ views on preparation to care for extremely premature infants at home

Aim: To gain insight into the post-discharge experiences of parents in relation to the adequacy of preparation for caring for extremely premature infants at home.

Method: A narrative approach was drawn on to facilitate data collection, through face-to-face semi-structured interviews with 14 parents of extremely premature infants.

Findings: Constant comparative analysis was used to allow the emergence of five key research themes - emotional and mental health of parents, uncertain outcomes, ongoing health needs of the baby, educational needs of health professionals, and parental support and preparation for transition home.

Conclusion: Parental experience of being discharged home with a premature baby can be emotionally challenging and necessitates a range of support mechanisms to help them to cope with this period of transition. Health professionals can direct parents to appropriate counselling services, resources and peer support groups. Tailored education is needed for community-based health professionals, such as health visitors, to equip them to support parents practically and emotionally during the transition home and beyond. In addition, health professionals can learn much from parents about what is needed to support them.