How parental involvement can be promoted in the care of preemies in different environments - global view [Workshop Session]

Silke Mader opened the workshop with the parents’ perspective, speaking both as the mother of a preterm baby (four and a half months in the NICU) and as a former preschool teacher. A global study on this topic is underway but has no results yet. She therefore drew on feedback from parent organisations in different countries. Her core message: parents are not visitors. It is their baby, and real involvement starts with very basic, practical conditions.

Understand the parents’ situation

• Parents are in a traumatic, highly stressful situation. Information often doesn’t stick, however many times it has been given, and that is not the parents’ fault.

• Medical, financial, social and administrative problems all arrive at once.

• Parents are very diverse: highly educated, critical parents who ask many questions; parents who don’t speak the local language; families from different cultural backgrounds.

The basics of being a main caregiver

• Parents can’t be present 24/7 with visiting hours, a locked door to ring at, or an upright chair. Nobody on staff would sit on that chair for 8 hours of kangaroo care.

• Units need a bed to rest, food, a shower and toilet, and comfortable chairs. This applies to fathers as well as mothers.

• These things should be designed into new hospitals from the start.

Partnership and communication

• Involve parents in decision-making.

• Use language parents understand; even a lawyer or a teacher cannot follow medical jargon.

• Repeat information, and give it in writing.

• Consistency matters. She recalled getting different messages from the morning nurse, another nurse, the weekend doctor and the Monday chief physician. When her primary nurse went on a two-week holiday, it felt like something to survive. Parents need to feel safe, and that requires one consistent message from the team.

A global view: very different realities

• Australia (feedback from the Miracle Babies Foundation):

  • Limited parental leave, combined with stays of four to six months or more.

  • Huge distances, no accommodation or food for parents, and expensive daily parking.

  • Marked inequalities for Indigenous families, including a higher preterm birth rate and a historical lack of trust in healthcare.

• Brazil:

  • Families in river communities may need days to reach the hospital, and lose contact with the rest of their family.

  • Language barriers for immigrant families in a Portuguese-speaking country.

  • The suggested solution is regional support and stronger local and primary care, rather than relying only on centralised units.

• Nordic countries and Canada: centralisation means long distances, which can mean flights in Canada.

  • Families may stay in the big city for months.

  • After discharge, every follow-up visit can mean a full day and an overnight stay at the family’s own cost.

  • Canada is working towards culturally safe, trauma-informed care for Indigenous families, newcomers and refugees, and towards standardised information and practice across the country.

• Low-resource settings (the Uganda example):

  • Fathers are kept out entirely.

  • Mothers wait outside the hospital, sometimes sleeping on the floor without food, and are allowed in only once a day for a few hours.

• USA:

  • With no paid maternity leave, parents must choose between their income and being at the bedside, and support is being cut further.

  • Black mothers and babies face around double the risk of dying.

  • The UK has some data on inequalities; Germany and most of Europe have hardly looked. She believes the problem exists all over Europe.

• Ukraine: war-time evacuations of preterm babies, fathers at the front or missing, and a higher preterm birth rate. Family involvement under these conditions is a reality we should not look away from.

Practical solutions

• Early, understandable information in many languages, for example the Neopedia platform.

• Interpreters. When they aren’t affordable, AI translation is not perfect but better than nothing.

• Cultural sensitivity, ideally with team members who share the families’ cultures.

• Family spaces and accommodation, which don’t need to be five-star: a bed near the hospital, partner hotel or Airbnb rates, Ronald McDonald House–type solutions.

• Practical support: lunchboxes for parents, affordable parking, social support so mothers aren’t left alone. Some German hospitals have won these battles with hospital management.

• Education: update curricula. The ESN already covers family involvement, but not country differences, inequality or racism.

• Advocacy: work with parent organisations and policymakers on parental leave. Sweden, which recently extended leave to grandparents, is her favourite example.

Take-home: “We need you, you need us – together we are a dream team.” You cannot change the world in a day, but every unit can start somewhere: a comfortable chair, food, a bed, one consistent message, and information parents can actually understand.

Disclosure: This is an AI-assisted summary of the session, generated from a recording made by our team in attendance. We believe it is as accurate as our own notes would be, but please refer to the speakers’ original work before applying anything in clinical practice.