Book review: Surviving prematurity: With compassion understanding and family integrated care

Surviving prematurity: With compassion understanding and family integrated care by Nadia Leake. Reviewed by Lorna Ginnell

Date published: May 2019

Surviving Prematurity

Paperback price: £7.99

Link to book on Amazon website

Reviewer: Lorna Ginnell, PhD researcher, Centre for Clinical Brain Sciences, Theirworld Edinburgh Birth Cohort

Reviewer expertise: I have an MSc in Neuropsychology and I am in the final year of a PhD specialising in infant development following preterm birth. My work includes engagement with parents of preterm infants and children

What is the book about and who is it aimed at?

Surviving Prematurity gives a personal account of the journey of Nadia Leake and her husband Martin following the birth of their twin boys at just 23 weeks of pregnancy. The book aims to guide health care professionals involved in neonatal care in their interactions with parents and families. The book explains the concept of Family Integrated Care (FICare), a model that aims to facilitate partnership and collaboration between parents and NICU staff, to promote parent-infant interactions, and to build parent confidence. Nadia uses her own experiences to advocate for FICare and to educate health care professionals on how best to communicate with parents of preterm infants in a sensitive, caring and empowering manner.

A brief description of the book

Nadia provides a month-by-month account of the encouraging highs and excruciating lows faced along their neonatal journey. These include the upheaval and uncertainty of moving between four different neonatal units, the heart-breaking loss of their son Raif and petrifying first night at home with his twin brother Harrison, away from the safety and familiarity of the neonatal unit. Nadia reflects on the communication received from NICU staff during these milestone moments and how each interaction had a substantial emotional impact. Using examples of both positive and negative encounters, Nadia illustrates how FICare and careful communication between health care professional and families can minimise hurt and empower families to feel supported and confident in caring for their preterm baby. The book includes reflections from health care professionals involved in the care of Nadia and her boys.

Is the content in line with best practice or research evidence?

There is good evidence for the effectiveness of FICare in improving short-term infant health outcomes including increased weight-gain, less infections, shorter NICU stay and reduced likelihood of being re-admitted to hospital after discharge. There is also evidence that FICare can reduce parent stress and anxiety and has recently been found to be associated with longer term outcomes including increased self-regulation at 18-24 months.

Nadia’s NICU experience took place in 2012 prior to the development of the FICare method. It is now more widely adopted and in 2021, the British Association of Perinatal Medicine published a draft framework for a UK wide roll out of FICare, which Nadia contributed to.

Would this book be helpful for its target reader?

For those who may be hesitant to adopt this approach, this book provides clear examples of how FICare could be transformative for the parents and families who receive it and conversely the harm that can be caused when this approach is denied to those who want it. This book would be of value to many other groups including researchers, educational professionals, and parents who have gone through or are going through a similar journey. The models of communication described in the book could be applied to many other scenarios where sensitive and empathetic communication is required and so the scope is far-reaching.

What is your final, overall opinion on the book?

I found this book to be extremely moving and am inspired by the author’s drive to use her personal experiences to educate others and to instigate positive progress and change.