A Case for NIDCAP Family Support Specialist

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Jessica Bowen, MSW, LCSW, I/ECMH-C

There is a special job in the NICU that is “Family Support Specialist.” This person has the opportunity to walk alongside families through their NICU stay with the primary purpose of enhancing their relationship with their precious baby. While the role may be adapted to meet institutional needs, the overall goal is facilitating healthy bonds and supporting infant mental health in the NICU. Infant mental health refers to how well a child develops socially and emotionally from birth to three years old. By observing, assessing and ultimately supporting the optimal development of these areas, we are preventing and treating mental health problems of very young children and families and laying the groundwork for healthy development.

The field of infant mental health, much like the NIDCAP, is multidisciplinary, and professionals from different disciplines may have the lens to support these relationships. That said, becoming a NIDCAP Professional enhanced my observational skills and provided me with an extremely useful tool to engage with families and “wonder with” more fully. It is my hope that as Newborn Intensive Care Units embrace family involvement, that NIDCAP Family Support Specialist will become an essential part of the NICU team.

I began my social work career as a Family Support Specialist working for the March of Dimes at Northwestern Prentice Women’s Hospital. At the time, the March of Dimes’ program focused largely on family education through providing materials and classes and hospital-based volunteer and parent mentor management. Family support specialists were prohibited from touching any NICU patient for liability reasons and focused on more macro work. We hosted events that brought families together or encouraged family involvement like Kangaroo-a-thons.

To enhance my skills I began postgraduate studies in Infant Mental Health at the Erikson Institute where I learned more about supporting parent-infant relationships through promotion, prevention and intervention. It helped me further develop a relational lens for my social work practice, and learn the significance of reflective supervision to address the feelings and experiences I had as a working professional.

There is a whole body of research discussing the difference between reflective supervision and other supervision models. At the core of reflective supervision is the belief that all relationships are important. That is, the relationship between the practitioner and their supervisor, the practitioner and the parent/infant they serve and of course the relationship between the parent and infant; All these relationships impact one another in a parallel process. Reflective supervision should be offered to the interdisciplinary team working with NICU Families. When done well, reflective supervision highlights strengths while partnering to address vulnerabilities. With shared power, reflective supervision creates a more ethical practice and encourages the practitioner to create and hone self-knowledge, cultural humility and critical thinking.

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Jessica with colleague Addy Caprio

With my newfound understanding of infant mental health and interest in reflective work, my next destination was UI Health NICU where, as a Family Support Specialist, I had more versatility to define the scope of this position. Perhaps the most inviting aspect of this job was that I would become NIDCAP trained under Jean Powlesland. Working at UI Health, I could utilize my new infant mental health relational lens and my clinical social work skills to more individually assess and support families. However, NIDCAP was the glue that held all the aspects of my job together and made this an Infant Mental Health position.

NIDCAP allowed me to better see through the eyes of the infant and interpret the behavior of the premature or sick baby with the family and nurse.  For me, NIDCAP is the most relevant and effective infant mental health tool for the NICU. Premature babies communicate differently than full term babies and sometimes parents can interpret these cues as rejection. Premature parents are forced to communicate in different ways than they would otherwise in the NICU due to the physical and emotional barriers. These barriers make it difficult for parent and baby to become attuned and learn to communicate with each other. This warrants infant mental health observation and intervention to bridge the communication gaps that exist in the early days so that they can create secure attachments and healthy relationships.

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One of our NICU moms reads the love letter from her baby

When I met with premature parents after their baby was born, I would use a simple assessment to start to gage how much they have begun to think about their baby as an individual. The Fussy Baby Network recommends asking, “Tell me three words to describe your baby.” Often, parents struggled to come up with words that describe individual qualities/characteristics and will land on some more common NICU descriptions like “loved, strong or fighter.” More times than not, they could not come up with three words. This is an easy way to gage how their relationship grows (or doesn’t) and how well they begin to know their baby over time. From here, information from NIDCAP observations can be integrated into Baby Love Letters.  Every two weeks or so, parents would receive a letter written from their baby to them. The letters included both sentimental lines and developmentally appropriate and individually assessed ways to interact and support the baby.

In the micro work with families, one of the most useful interventions requires very little clinical skill but a tremendous amount of patience and compassion. Family Support Specialists learn the art of just being with and holding space for the infant and family. In some of the most difficult circumstances there is not anything to do or say but to just “be with.” When I allowed myself to be comfortable with silence, I found some of the most authentic moments unfold. I can remember distinctly a “difficult mom” fall into my arms, heartbroken and afraid, no need for words. It was powerful what she communicated to me so much so that when I think about her now, I can still feel some of her sadness in my own heart.

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Our Mother’s Day celebration included artwork with each baby’s footprints

There are times, of course, when assessments (and words) are helpful. There were even some parents who were ready and open to receiving more classic mental health therapy in the NICU. Outside of NIDCAP, I found that depending on my relationship with the family, questions from Angels in the Nursery or ACES could help me better gage how to support the parent/infant relationship. But often, just touching base by asking “What has this been like for you?” and “What have you noticed about your baby recently?” was enough intervention in the NICU to start meaningful conversations.

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Each week parents are invited to print out photos to make scrapbook pages, with supplies and snacks provided by the unit

In the macro work with families, NICU Family Support Specialists provide opportunities for families to meet and interact through programs and support groups. I observed that parents who actively participated in Family Support programming were better able to describe their baby at the end of their NICU stay than parents who were not active. Parents had an opportunity to more fully integrate what they were feeling and learning by creating relationships with other families in the NICU.

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The charms we give to parents to mark their baby’s milestones so they can create a keepsake bracelet

Weekly the NICU would offer scrapbooking where parents could print off photos of their baby and create keepsake pages to show their journey. Likewise, bimonthly parents had the opportunity to participate in the “Journey Beads” program where they created charm bracelets where each charm symbolized a milestone of some sort creating a tangible memento of their and their baby’s NICU experience. In addition to more structured groups, we held dinners and holiday events. These programs can be tailored to different NICU needs but the coordination of opportunities for parents to meet and talk about their baby with current families is the goal.

Working as the Family Support Specialist with Jean Powlesland was an extraordinary professional experience; one that I look back on with gratitude. The position is created to be flexible and can be tailored to the professional’s skill set but always with the focus of supporting early relationships in the NICU. While every NICU professional should be holding the parent/infant relationship at the center of their work, it is especially significant to have one person in the NICU to focus entirely on the baby and family experience through NIDCAP assessment, Infant Mental Health intervention and reflective practice consultation.

Jessica Bowen
Licensed Clinical Social Worker, infant and early childhood mental health credentialed and a NIDCAP professional

References
Finding Your ACE Score. (n.d.). Retrieved from https://www.ncjfcj.org/publications/finding-your-ace-score/

Narayan, A. J., Ippen, C. G., Harris, W. W., & Lieberman, A. F. (2017). Assessing Angels In The Nursery: A Pilot Study Of Childhood Memories Of Benevolent Caregiving As Protective Influences. Infant Mental Health Journal, 38(4), 461–474. doi: 10.1002/imhj.21653

https://www.aaimhi.org/resources/reflective-supervision/BestPractice_ReflectiveSupervision_2015.pdf

Van Horn, P., Lieberman, A. F., & Harris, W. W. (2008). The angels in the nursery interview. University of California, San Francisco, Department of Psychiatry.

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2020 Year of the Nurse and Midwife…Celebrating nurses in our training centre and newborn unit

Nadine Griffiths, RN, MEd

Nadine Griffiths, RN, MEd

When they announced 2020 as the Year of the Nurse and Midwife, as a nurse I felt honoured and humbled to be recognised by the World Health Organisation (WHO) as a profession worthy of this praise. Yet as 2020 has evolved, and the world is faced with an unprecedented health event, nurses globally are muttering under their breath – ‘of course it is the year of the nurse’. To be honest it speaks to the origins of modern nursing.

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Florence Nightingale

Florence Nightingale was a social reformer and is viewed as the founder of modern nursing.1 In the year we celebrate the 200th anniversary of her birth, we are reminded of her efforts to improve hygiene practices and the establishment of the Nightingale School of training for nurses at St Thomas’s hospital.1 Both are relevant today, as we stress the importance of hand hygiene (and social distancing) in the broader community, and within the NIDCAP community education is the cornerstone of our work. Whilst the current global pandemic may be interfering with our capacity to provide face to face education and training, NIDCAP training has provided us with knowledge and skills to advocate for newborns and importantly families in these unsettling times.

So why did nurses and midwives receive the honour of a year in their name? The WHO2 identified the following components as to why nurses and midwives required recognition:

  • Nurses and midwives play a vital role in providing health services.
  • These are the people who devote their lives to caring for mothers and children; giving lifesaving immunizations and health advice; looking after older people and generally meeting everyday essential health needs.
  • They are often, the first and only point of care in their communities.
  • The world needs 9 million more nurses and midwives if it is to achieve universal health coverage by 2030.
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Party Day 2019 – Members of Grace Centre for Newborn Intensive Care Team

For nurses working in the newborn intensive care setting and NIDCAP units we are at the forefront of clinical care. Alongside the multidisciplinary team we work closely with parents and babies to support them on an unimaginable journey. In most newborn units there are more nursing staff members employed than any other discipline, valuing and acknowledging their role in the delivery of care is important.

The nursing team I have the privilege of being a part of are incredible. I would like to share with you some of the work being undertaken in our training centre and newborn unit by nurses to support the provision of infant and family centred care.

Nurse Led Research

  • Priya Govindaswamy (Clinical Nurse Educator) is in the final stages of her PhD Candidature, her research explored the needs and stressors of parents of newborns requiring surgery (3,4)
  • Philippa Mann (Clinical Nurse Educator) is undertaking a PhD, exploring the effects of Co-bedding in Twins (CoT Study) https://www.facebook.com/The-CoT-Study-Co-Bedding-Of-Twins-In-The-Neonatal-Period-2131024550273444/
  • Jeewan Jyoti (Registered Nurse) is a nursing research fellowship participant who is leading the PAIN-PAM study, reviewing parent perception of their involvement in the management of their babies’ pain in the surgical NICU
  • Amy Barker (Nurse Practitioner) led work on a nurse led ventilation weaning protocol
  • Louise Wilson (Clinical Nurse Specialist) led work on the feasibility of a feeding algorithm in a surgical newborn setting
  • Donna Hobson (Registered Nurse) led work on the development of a Gastroschisis feeding protocol
  • Kristen James-Nunez (Nurse Practitioner and NIDCAP Professional) is leading research on invasive procedures during skin to skin
  • Two articles have been published by our NIDCAP Training Centre (with a nurse as the lead author) in the past 12 months (one is currently in press)5

Nurse Led Quality Improvement Activities

  • Kahlee Doyle (Registered Nurse) is reviewing bathing products for surgical skin preparation (benchmarking project)
  • Jillian Lotoaniu (Clinical Nurse Specialist) and Alyssa Fraser (Clinical Nurse Consultant) are working on the development of a parent diary template for families in the surgical NICU
  • Emma Carey (Nurse Unit Manager) is leading work on monitoring central venous access device functionality

Quality improvement activities partnered with the NIDCAP Training Centre

  • The Little Readers Read-a-thon is led by Alyssa Fraser (Clinical Nurse Consultant), it is an annual event designed to increase exposure to adult language and reading in the newborn setting
  • The My colourful journey sibling colouring in book led by Jillian Lotoaniu and Belinda Jacmenjak (Clinical Nurse Specialist) is an award-winning initiative designed to help siblings understand the newborn unit and reduce vicarious trauma. The team are now working on a palliative care edition of the colouring in book

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There are many more individuals and projects I could mention. The point of highlighting the work of the nurses in our team is that their contributions range from practical clinical focused solutions to innovative initiatives designed to support families and evidence based research challenging current practices and seeking to improve the world of neonatology. From the origins of nursing as ‘wet nurses’ (yes you read that correctly), to modern nursing driven by Florence Nightingale, and to nurses today who are educated, dynamic, drivers of practice – we definitely deserve a year to celebrate our achievements.

What can the NIDCAP Federation International learn from the Year of the Nurse and Midwife? Five key investment areas have been identified by WHO:6

  • Invest in more nurse-led and midwife-led services enabling nurses and midwives to work to their full potential
  • Employ more specialist nurses
  • Make midwives and nurses central to primary health care, providing services and supervising community health workers
  • Support nurses and midwives in health promotion and disease prevention
  • Invest in nursing and midwifery leadership

How do these goals align with what the NIDCAP community and the NFI are trying to achieve? Promoting the importance of funded NIDCAP trained nurse developmental specialists, supporting nurses to promote NIDCAP within their own country and globally, and encouraging nurses and midwives to step up as leaders within the NFI community and board, are areas where the NFI’s support is greatly appreciated and needed. The accessibility of NIDCAP training to nurses is more important than ever and consideration of how we can meet this goal will further the work of the international NIDCAP community, benefiting newborns and their families.

Me+in+the+unitWe would like to encourage the NIDCAP community and Newborn Units globally to acknowledge the work of your nursing team members, offer them opportunities within and external to your units and celebrate their contribution to the care of newborns and their families. Not only in the year of the nurse and midwife, every year.

To the nurses working at the forefront of the current health pandemic, thank you. I know this was meant to be our year, and in a sense it is, because we alongside our healthcare colleagues are out there working harder than ever before and more selflessly than has been previously required of us. Stay safe.

Nadine Griffiths
NIDCAP Trainer
The Australasian NIDCAP Training Centre
Westmead, Australia

References:

  1. Biography (2020) Florence Nightingale (1820-1910). https://www.biography.com/scientist/florence-nightingale [accessed March 2020]
  2. World Health Organisation (2020) https://www.who.int/news-room/factsheets [accessed March 2020)
  3. Stressors of parents of infants undergoing neonatal surgery for major non‐cardiac congenital anomalies in a surgical neonatal intensive care unit (2019) https://onlinelibrary.wiley.com/doi/abs/10.1111/jpc.14673
  4. Needs of parents in a surgical neonatal intensive care unit (2018) https://onlinelibrary.wiley.com/doi/abs/10.1111/jpc.14249
  5. Individualised developmental care for babies and parents in the NICU: Evidence-based best practice guideline recommendations (2019) https://www.ncbi.nlm.nih.gov/pubmed/31445697
  6. World Health Organisation (2020) Key Messages Year of the Nurse and Midwife.  https://www.who.int/news-room/campaigns/year-of-the-nurse-and-the-midwife-2020/get-involved/key-messages [accessed March 2020]

 

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UK NIDCAP Centre Celebrates World Prematurity Day

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Gillian Kennedy, NIDCAP Trainer poses with the unit’s psychotherapist in celebration of World NIDCAP Day

University College Hospital, London, UK is the home of the UK NIDCAP Centre.

This week sees us busy with preparations to celebrate World Prematurity Day and plans are in full swing.

On the first WPD, we decorated the neonatal unit with a brightly coloured Sock Line and began Pudding Club, hosted by the unit psychotherapist and the NIDCAP trainer.  The hour long session continues weekly; it has no agenda but rather provides an opportunity (over sweet treats!) for parents to meet each other, air their views and seek support or advice.  The initiative has proved so successful that it has been introduced in other units, often at the request of the families on transfer.

WPD at UK NIDCAP Ctr

Nursery Nurse, Jamilah helps make World Prematurity Day special

 

Our Nursery Nurse, Jamilah, has organised a host of treats for babies, families and staff:

octupus Each baby will receive a small purple octopus

Bath salts Mothers will get an indulgent bath treat from Lush

Staff treats Staff and parents will have the opportunity for a relaxing massage

Samosas Staff will tuck into samosas

Finally, we will celebrate the day itself with a big party for babies and families who have spent time with us on the newborn intensive care unit. The celebration takes place on Sunday hosted by Early Lives, which raises funds and supports for our Neonatal Fund.

Celebrate World Prematurity Day!

- Gillian Kennedy OBE
NIDCAP Trainer / Consultant SLT, UCLH
UK NIDCAP Centre

 

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Two Part Series – NIDCAP Care as Experienced by Two Nurses, One a Veteran, One a Novice

Part 2. My Impressions as a “Young” NICU Nurse

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Orna Netzer, RN

In Hebrew, a new nurse in a unit or ward is often called a “young” nurse; I am then a quite “young” NICU nurse, although I am in my fifties…

I went through a long and colorful journey of education and work before I became a neonatal nurse. I have always taken care of children and babies. In my last professional role, before I went to nursing school, I helped children with special needs to become integrated in the general educational school system, and also gave guidance to their parents. It seems, though, that I have always felt an attraction to the health professions; I was lucky to witness their impact and importance while I volunteered for the non-profit organization “Baby Huggers”, a project that brought me to various hospitals and to so many babies. I was already a mother of three children and not young when I decided I to go to nursing school to become a nurse.

Both during my volunteer work and my nursing practices in different hospital wards, I noticed the complexity of the relationships between patients, families and caregivers. Such a mixture of distress and intense feelings – sadness and often helplessness on the one hand, and happiness, excitement, containment, patience, hope and professionalism on the other.

Yet, there was something different about the NICU at Meir Medical Center that made me feel immediately connected to it. The NIDCAP principles implemented in this unit affect its atmosphere, its characteristics, the caregiving itself, and the relationships between parents and staff. Perhaps the following every-day life sequence may better illustrate what I mean: early morning, I get ready, I prepare sandwiches for my children and for myself, take the shopping list with me, enter the car, listen to the radio – news, elections, tension in the south border of my country, traffic jams ahead, a call home to wake my son up for school, a call to mom to check on her, in a rush to take the lift and to be at the NICU on time, to release my colleagues from the night shift; I open the Unit’s doors and then… the lights are dimmed, the place is quiet, my mobile phone remains in the locker outside. I disconnect myself from the outside world. For eight hours now I will be in a separate universe – in charge of several preterm babies. I have to take care of them; I help ease their experience of being out of the womb before their due date; I provide them with soft and containing touch, I am ever mindful of how important it is to be accurate, to keep a low profile even when I have to be efficient and quick. As I see it, I have to safeguard that developing brain; I have to care for the medical needs of that baby and for the quality of his life to come; to leave as few traces of distress as possible in his inner, still intact “memory-board”. I find my work as a NICU nurse to be a weird and magic combination of intensive care, softness, pampering, containment, serenity and gentle touch.

I put a comforting hand on a mother’s shoulder, I encourage her to touch her baby, to calmly put her hands on his body, and then guide her to hold him skin-to-skin – thus trying to help them bond by little steps. I am part of the parents’ first steps in caregiving; I witness their fear and excitement, and I feel I am fully there to help them conquer the confidence in themselves they so much need. Their bliss and excitement penetrates me and my own happiness grows.

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Orna, second from left, celebrates Kangaroo Care Awareness Day with her colleagues, including “veteran” nurse, Michelle Julie Meyer, far right.

The work at the NICU has high standards, forever demanding my alertness and skills to work as part of a team. The NIDCAP approach gives me the understanding and the tools to provide care – which can be oftentimes intrusive and distressing – in a soft and sensitive way for both the baby and the family. In my view, our ever growing ability to make this delicate combination possible, is what makes our work with preterm infants so important and fulfilling.

 

 

- Orna Netzer, RN
Neonatal Nurse
Israel NIDCAP Training Center
Meir Medical Center
Kfar Saba, Israel

Please see below for the link to the first part of the NIDCAP Care as Experienced by Two Nurses, One a Veteran, One a Novice series: Part 1. My reflections as a veteran nurse on the evolution of NIDCAP Care in our NICU, by Michelle Julie Meyer, RN.

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Two Part Series – NIDCAP Care as Experienced by Two Nurses, One a Veteran, One a Novice

Part 1. My reflections as a veteran nurse on the evolution of NIDCAP Care in our NICU

Michelle

Michelle Julie Meyer, RN

I retired from work recently. I started my journey as a NICU nurse thirty years ago, when the Neonatal Intensive Care unit (NICU) just opened its doors at Meir Medical Center. After I was discharged from my service in the Army, I worked with adults in Intensive Care, and actually planned to continue in that field. When I was offered to join the new NICU, even though I was scared to make a shift from adult to newborn care, I decided to give it a try and, …. the rest is history.

I remember my first day all too well. Shortly after being guided by the pioneer Neonatologist who founded the NICU, I had to actually start to work and perform as a bedside neonatal intensive care nurse. I was scheduled for the night shift that first day, and worked with her side by side. I recall being very excited and emotional, yet my first shift went along well. During the next months I gradually got used to working with those tiny and fragile babies. I fell in love with them and with the work I did – the proof is I stayed at the NICU for 30 years!

Back then no one spoke, in our milieu, about Developmental Care, nor NIDCAP. All babies in need of assisted ventilation were cared for in open radiant beds at that time; in order to keep their body temperature stable, we partially covered them with a loose transparent polyethylene sheet. Those preterm babies used to lay untucked on their backs, often with their arms and legs away from their bodies. Fluorescent light illuminated the room and it was not possible to dim them. Everything took place in one long room – the caregiving, the numerous staff rounds and huddles, parents going in and out, … it was quite a hectic and noisy place. I recall we bathed the babies during the night shift, very quickly, as the bath “ought to be done”. Surprisingly enough, babies were weighed on a fixed schedule in the morning hours; there was no awareness, at that time, to cluster some of the caregiving according to the baby’s needs.

Some years later, a new, gentle and sensitive nurse talked about an advanced approach to preterm infant care called Developmental Care, and introduced the concept of NIDCAP to our NICU. It was certainly difficult to introduce this approach at first, and I believe it was quite a long and very quiet “revolution” that would not have thrived nor succeeded without her and without the support and vision of our managers and the openness of our staff. Initially, I thought it would be very hard for us to change our care in such a way; it was only when I delved deeper into the concept of individualized developmental care that I understood its meaning and importance.

During those years I gave birth to a 34-week-old little girl. The developmental care approach in our hospital was in its infancy and just beginning to emerge. Looking back, I feel my daughter and I had so many missed opportunities. If I knew better, I would have managed the whole experience differently. I think she lacked being held skin-to-skin, and I did not succeed in breastfeeding her.

Therefore, as a professional I gradually became very supportive of Developmental Care and found it crucial for preterm infants. The very essence of it is – in my view – to try to emulate in the NICU the womb’s conditions so as to diminish the potentially adverse neurological, physical, psychological and developmental effects the baby and family might experience. I am not able to envision today another way of caring for them, and feel deep sorrow when I hear about babies and families that are not cared for in this nurturing and supportive approach.

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Michelle (far right) and her colleagues celebrate International Kangaroo Care Awareness Day

Persistent work was certainly necessary to implement the NIDCAP approach in our NICU’s everyday life; we had to learn and be guided, and we had to engage the whole caregiving team. I believe that our very special and sensitive team, with the support given by the NICU’s managing team, was decisive in transforming the unit into one where the NIDCAP approach to care has become second nature. We were lucky enough to have part of our staff trained by Dr. Heidelise Als and Dr. gretchen Lawhon, and to finally become the Israel NIDCAP Training Center at Meir Medical Center in October 2018. Caregivers from many other NICUs in our country participate in the Center’s courses and the NIDCAP word is now spreading in Israel.

I changed profoundly over those years. The developmental approach to care guided by NIDCAP gives support to parents in that sensitive period when the baby is in the NICU. I gradually was able to see the baby and his/her parents as a “unit”, and realized that our caregiving is meant to be for the family as a whole. It was important to me to be close and around the parents. I became more empathetic. It became important to me to really support the parents, to be a good listener, to encourage their presence at the bedside and to explain to them how their very presence diminishes the stress that their baby might experience in the NICU environment. I realized that separating the preterm baby from the mother right after birth is traumatic for them and therefore bodily contact between them is crucial. I could tell the difference between a baby whose parents were with him/her most of the time and a baby that is left alone for hours.

I like to think of our NICU as a shelter for babies and parents who go through a very difficult period. Looking into the future, I would like to see in my country more continuity of care between the NICUs and follow-up care in the community.

- Michelle Julie Meyer, RN
Retired Neonatal Nurse
Israel NIDCAP Training Center
Meir Medical Center
Kfar Saba, Israel

Please watch for the second part of the NIDCAP Care as Experienced by Two Nurses, One a Veteran, One a Novice series: Part 2. My impressions as a “young” NICU nurse, by Orna Netzer, RN.

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Why I joined the NIDCAP Federation International

Jennifer Degl

Jennifer Degl

I joined the NIDCAP Federation International in 2017 after attending their annual NIDCAP Trainers Meeting in Edmonton, Canada.

NIDCAP stands for Newborn Individualized Developmental Care and Assessment Program and the NFI stands for the NIDCAP Federation International.

When babies are born too early or medically fragile, they are forced to spend the first months of their lives in a hospital, instead of in the comforts of their home. In the Neonatal Intensive Care Unit (NICU), these babies are kept in a plastic box and attached to tubes and wires, all of which make them extremely uncomfortable. Many of these tiny babies also experience a great deal of pain due to medical procedures and surgeries. Research shows that the NICU stimuli may interfere with a baby’s normal neurological development, and can cause a myriad of issues as the child grows.

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Jennifer’s daughter at 3 days old

My daughter was born at 23 weeks gestation in 2012 at just 575 grams (1 lb 4 oz) and was not even as long as a ruler. She spent 121 days in the NICU and endured more pain and medical procedures than most healthy adults experience in their entire lifetime. I would have given anything to reduce her pain and keep her comfortable during her time in the hospital. The practices of NIDCAP and the NFI would have been so helpful to me back then, if I only knew they existed.

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Why Partnering with Parents in the Neonatal Unit is the Key to Everything

Nadine Griffiths, RN, MEd

Nadine Griffiths, RN, MEd

Admission to the neonatal unit occurs during a sensitive period of development. The first 1,000 days of life from conception to age three is considered an open and critical, singular window of opportunity (UNICEF 2018). During this period, children’s brains can form 1,000 neural connections every second, this period of rapid neurodevelopment occurs at a once in a lifetime pace which is never matched. The connections formed are considered the building blocks of every child’s future, contributing to children’s brain function and learning, they lay the foundation for their future health. A lack of nurturing care during this period which includes adequate nutrition, stimulation, love and protection from stress can impede the development of these critical connections. The importance of this period of development is highlighted in a UNICEF global promotion known as #earlymomentsmatter. For babies in the neonatal unit the buffer against known stressors in this setting and the source of consistent nurturing care is their parents.

Parents make not only ‘a’ difference, they are ‘the‘ difference and biggest influence on outcomes of neonates who experience an NICU stay. Recent research has found that increased holding of babies by parents in the neonatal unit is related to better reflex development at term, with parent skin to skin holding increasing infant reflexes and gross motor development at 4-5years of age (Pineda et al 2018). The authors of this research suggested these findings highlight the importance of engaging families in the NICU.

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Father supporting his baby in surgical intensive care

Yet parenting for both mothers and fathers in the neonatal unit is a unique and challenging experience. Researchers have found that up to 64% of mothers in the neonatal unit experience psychological distress both within and beyond the NICU. With mothers who experienced psychological distress demonstrating less confidence in parenting than mothers without psychological distress (Harris et al 2018). Whilst fathers in the neonatal setting have described parental role alteration, infant appearance, NICU environment, and staff communication as stressors (Prouhet et al 2018). Universally engaging parents during their NICU hospitalization is seen as a strategy that improves parenting confidence and reduces parental role alteration. Family involvement is essential to facilitate early and long lasting positive effects on their baby’s physical, cognitive and psychosocial development (Craig et al 2015).

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Partnering with families on a Developmental Round in PICU

Whichever philosophy or model of care is utilised in your neonatal unit, parents should be at the centre of all you are trying to achieve. NIDCAP is a model of care that has been partnering with parents for the past 36 years. NIDCAP Certified Nurseries, Professionals and Training Centres are focussed on supporting relationships between neonates and their parents, health professionals and parents within system in which we both exist. We recognise that what works for us as healthcare professionals and the families may not be the same thing. For staff engaged with NIDCAP the neonatal unit is seen as the families’ space, when we enter we are walking into their home, this place is their everyday, it is where their baby lives, sometimes it will be the only space where they are existing.  These concepts remind us to respect babies and families by the way we behave, speak and go about our day in the NICU, encouraging us to support them and the connections they would foster in a home environment. Families should not be made to conform to the rules or language of a hospital system instead we need to make the system work for them, for each different family and their diverse needs. This approach requires a commitment to understanding the needs of infants and families, whilst investing in staff and a culture which seeks to embrace and support parents in an environment that they may have never heard of or imagined.

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Siblings welcomed in the surgical NICU setting

Recently the ‘Eight principles of patient-centred and family centred care for newborns in the neonatal intensive care unit’ has been promoted by clinicians in Europe (Roué et al 2017). The authors advocate additional research or evidence is not required to implement these strategies due to the breadth of the existing body of evidence. Unsurprisingly the first principle recommended is free 24 hours a day parental access with no limitations due to staff shift or medical rounds. We would argue that this should be extended to siblings, as parents often struggle to meet the needs of a toddler or child and their baby in the neonatal unit. Asking them to choose between their children’s needs is cruel and as evidenced by the literature and lack of infections related to sibling access in the neonatal setting unnecessary (Horikoshi  et al 2018). Infants’ and families’ needs during the neonatal period are viewed as universal; therefore, an effort to implement principles that engage families and support them within this setting is needed in all units and countries.

Adopting a philosophy where we learn from parents and their experiences in the neonatal unit is essential when developing services to meet current and future needs. Hearing what parents have to say of their time in the neonatal setting can be unexpected, unsettling and challenge the beliefs you hold in relation to your own practice and the service your unit provides. The experience of being open to and learning from parent’s experiences offers an incredible platform for personal, professional and unit development.

Some of the lessons I have learned personally as a nurse in the neonatal unit from families about how we can place them at the centre of caregiving include:

  • My job is to advocate for you and your family on a journey that is uniquely yours
  • We all have work to do, this is not about perfection
  • Little things to me, might mean everything to you
  • Not every family wants or needs the same thing, they should all be offered the same opportunities and respect
  • Celebrate everything the big, the little, the in-between – life is too short
  • You the mum, the dad, the baby can teach me (the healthcare professional)
  • These babies in this place are always yours, my job is to support you in an environment that is unfamiliar and often unimagined
  • We all have good and bad days, we can be at our best or our worst, tomorrow is another opportunity to try again
  • Saying I am sorry this is terrible, means more than trying to justify something
  • Perspective is everything and we are all coming from a different direction
  • Telling a family to take a break and get some rest doesn’t help them. Getting a comfortable chair, a glass of water or cup of tea and a blanket not asking them to go anywhere means more
  • It is rare to be untouched and unaffected in the neonatal unit as either a parent or staff member. We all carry different pieces of our journeys or those journeys we have witnessed with us – what we see changes us.
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NIDCAP Trainer working collaboratively with a family

As health care professionals we are in a unique position to learn from parents and their babies, where ultimately our role is to advocate for caregiving in partnership with and led by them. Placing families at the centre of quality improvement activities, research, staff training, clinical guidelines, practice initiatives and all that we do in the neonatal unit is the key to our success. We are responsible for what families achieve during their journey and beyond the neonatal unit. Asking ourselves how we can continue to improve their experience and learn from them is something we should ask ourselves before every interaction and at every opportunity.

 

Nadine Griffiths
Clinical Nurse Consultant
NIDCAP Trainer, Australasian NIDCAP Training Centre

 

References

Craig JW, Glick C, Phillips R, Hall SL, Smith J, & Browne J (2015) Recommendations for involving the family in developmental care of the NICU baby. J Perinatol. 35(Suppl 1): S5–S8.

Harris R, Gibbs D, Mangin-Heimos K, & Pineda R. (2018) Maternal mental health during the neonatal period: Relationships to the occupation of parenting. Early Human Development 120: 31–39

Horikoshi Y, Okazaki K, Miyokawa S , Kinoshita K , Higuchi H, Suwa J, Aizawa, Y &Fukuoka, K. (2018), Sibling visits and viral infection in the neonatal intensive care unit. Pediatrics International, 60: 153-156. doi:10.1111/ped.13470

Pineda R, Benderc J, Halla B, Shaboskya L, Anneccaa A & Smith J (2018) Parent participation in the neonatal intensive care unit: Predictors and relationships to neurobehavior and developmental outcomes. Early Human Development 117: 32–38

Prouhet PM, Gregory MR, Russell CL & Yaeger LH. (2018) Fathers’ Stress in the Neonatal Intensive Care Unit: A Systematic Review. Advances in Neonatal Care. 18(2):105–120

Roué J-M, et al.(2017) Arch Dis Child Fetal Neonatal Ed;102:F364–F368. doi:10.1136/archdischild-2016-312180

UNICEF (2018) Early moments matter https://www.unicef.org/media/media_94378.html

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What NIDCAP meant to my NICU experience…

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Latoshia Rouse

Just 7 days earlier, I had an OBGYN visit. After a great visit, I asked other moms of multiples if they thought I would make it to 36 weeks. My doc seemed very confident that I would, but I wanted to talk to moms who had accomplished it. We laughed and giggled at the possibility of me breaking the record for triplet birth weights. Everything was going great! This day I was super tired. I was beginning to struggle with standing for short periods of time. I was seeing the toll this pregnancy was having on my body. I decided to lay down and rest, but I needed to go to the bathroom first. Once I got in there, I realized my water had broken. Within an hour I was in the emergency room. I still was not sure what all this meant, but I knew I was not going back home until I had them. I had a 3 year old at home and I was not able to be with him. I was so torn. Everything was messed up. My body was failing the babies I was carrying and I was not able to parent the baby that was here. This was a Tuesday and after the steroids/ magnesium, I delivered my babies on Friday morning. They were 26 weeks 6 days. 2lbs 10oz, 2lbs 8oz, and 2lbs 3oz of perfection. It was a whirlwind. I had 4 kids. From 1 kid to 4 kids in about 29 mins. Continue reading

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NIDCAP – Mi experiencia personal con trillizos

Mónica Virchez

Tuve la oportunidad de tener a mis trillizos en el año 1999 en Londres, Inglaterra. Nacieron de 29 semanas de gestación en el Hospital Hammersmith y posteriormente los trasladaron al Hospital Saint Mary’s. Los bebés, dos niñas y un niño  pasaron dos meses en la UCI de neonatos de la Winnicott baby Unit. Durante la estancia en UCI recibimos información para poderlos apoyar en su desarrollo en general, sobre todo a nivel físico, psicológico y emocional. Trasladaron a los 3 bebes en una ambulancia especial para prematuros de un hospital a otro junto con una enfermera especializada con la que más tarde tuvimos mucho contacto. Cuando llegamos al segundo hospital encontramos un corcho colgado en la pared en donde venía escrito el nombre del personal sanitario para identificarlo más fácilmente a tanto a los médicos como a las enfermeras.

Instalaron a los bebes en una sala común pues había varios bebes ingresados y la unidad de cuidados intensivos se veía muy activa en ese momento. Continue reading

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When Life Gives you Lemons: A Personal Story from Bulgaria about Pregnancy, Birth, Loss & Family, Part 2

Nina Nikolova head shot 2

Nina Nikolova

In 2008, following the deaths of my children, I went home from the hospital feeling empty and broken-hearted. I simply wanted to close my eyes and die. I physically appeared to look pregnant and friends continued to enquire after the well being of my babies. I did not have the mental strength to deal with the reality of the situation and my husband was left to field the well-meant enquiries.

A number of months later we decided that we were strong enough to try for another pregnancy. The desire to have a family was so strong yet despite not being emotionally ready, we found the strength to embark on another pregnancy journey. Unfortunately the ICSI attempt failed and we had to face the stark reality of waiting for 12 months before we could try again (in Bulgaria families must wait 12 months between fertilization attempts).

Returning to work proved more difficult than I anticipated. While my friends and colleagues so dearly wanted to support and help me, they didn’t know how to speak with me, what questions to ask, or what I needed to help me in my grief. Continue reading

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