18. Family Integrated Care - what do parents say?

Wild Card - Whose Shoes?

Family Integrated Care makes a huge difference to families when their baby is in neonatal care. Today I am talking to Nadia Leake and Rachel Collum, two mums who have had babies in neonatal care, and are doing wonderful work in this area.
In a nutshell

“Parents and babies need each other and must stay together, with their relationship nurtured and supported from the very beginning throughout the neonatal experience and into the community.”

Family Integrated Care is the way forward! It has come such a long way since we included a scenario in our Whose Shoes ‘Nobody’s Patient’ resources back in 2016.

The BAPM FICare framework has just been published.
The 5 pillars run naturally through the podcast:

1. Partnership with parents
2. Empowerment
3. Education
4. Culture
5. Well-being

Lemon light bulbs 🍋💡🍋
Partnership with parents

• Parents should not need to ask for permission
• #ParentsNotVisitors
• Listen to parents. They know and love their own baby in a unique way
• Look beyond the medical
• Work together to enable the parent to be the primary caregiver. This helps bonding and allows the baby’s’ brain and development to thrive

Empowerment

• Move away from anything that assesses parents – feels judgemental. Offer proper support
• Trust – acknowledge parents as the experts in their child
• Respect the natural and what parents bring to their children
• Little things are the big things – a fingerprint key fob to be admitted to the ward, rather than having to ask to visit your baby!

Education

• Community services – GPs, health visitors, families - need training and support to be able to understand and support families after a NICU experience
• Give parents the training they need to be able to thrive at home and look after their child, including necessary medical procedures

Culture

• NICU is the baby’s home - not the home we expected. Make it as homely as possible!
• Parents are not being ‘difficult’ when they ask questions !
• Peoples’ needs and preferences are very different – so before you do anything personal, like reading a story to the baby, ask the parents whether they would welcome this
• Work together to understand each other’s perspectives – what are people scared about, how can this be resolved?

Wellbeing

• Guilt. Mixed emotions. About everything. Unprepared
• Some trauma is inevitable – focus on the areas of avoidable trauma - good communication & helping parents do everything to bond with their babies

Other resources
Whose Shoes - an overview
#MatExp

Posttraumatic Stress Disorder in Parents of Premature Birth Neonates.

Evaluating the effect of FICare on maternal stress and anxiety in neonatal intensi

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Bab

1. 18. Family Integrated Care - what do parents say? (00:00:00)

2. Listen to parents! Closing the gap between the reality of living on a neonatal unit and the hopes and dreams of going home (00:02:10)

3. Dealing with complex feelings (00:03:37)

4. What is Family Integrated Care? (00:05:32)

5. #ParentsNotVisitors (00:06:57)

6. No more ‘theoretical mummy’. The power of poetry. (00:08:14)

7. Family-CENTRED care is just a start. What is the difference? (00:08:38)

8. Being trusted. Being acknowledged as the expert in my child. (00:09:35)

9. Parents shouldn’t have to ask for permission (00:11:46)

10. Building confidence to take the baby home (00:12:46)

11. Bottled up emotions - mental and physical effects (e.g. breastfeeding) (00:14:50)

12. Separation (00:15:58)

13. Fight or flight. PTSD. Research. (00:16:40)

14. Reducing the risk of trauma. Avoidable trauma. (00:18:58)

15. Support in the community. Including supporting healthcare professionals and families to know how to help (00:20:38)

16. Antenatal care. What should be included? (00:23:10)

17. Lack of understanding of the needs of premature or sick babies and their parents (00:24:22)

18. Training for health visitors so they can tailor support more appropriately (00:25:40)

19. Bonding (00:28:44)

20. Environment, physical limitations, rules (00:29:43)

21. Personal preferences, little touches, reading stories (00:30:28)

22. Trust, guidelines, flexibility (00:31:35)

23. Parent Advisory Groups - examples of best practice (00:32:36)

24. Family integrated care reduces the ‘lottery’ of good care (00:34:07)

25. Trusting parents to be able to care for their baby, and providing education and training as needed (00:34:48)

26. Good communication reduces stress (00:37:00)

27. Parents are not being ‘difficult’ when they ask questions or want to cuddle their baby (00:38:04)

28. Healthcare professionals being ‘on the other side of the fence’ (00:39:42)

29. Walking in the shoes of healthcare professionals. WhatWalking in the shoes of healthcare professionals. What makes them scared? (00:40:18)

30. The BAPM framework - and why it matters (00:44:16)

31. COVID and burnout (00:46:03)

32. So what does good coproduction looking like? Parent passports and more. (00:47:58)

33. A shoutout to Leigh Kendall and Helen Calvert – early #MatExp ‘Nobody’s Patient’ pioneers in Family Integrated Care (00:51:28)

34. Next stop - transitional care! (00:52:10)