Infant & Family-Centred Developmental Care:

Parental Involvement & Family Support Services

European Standards of Care for Newborn Health

The 2020 Stockholm Conference on Ultra- Early Intervention

Statement Of The Standard

Parental Involvement

“Parents are members of the caregiving team and, with individualised support,

assume the primary role in the provision of care of their infant, and are active

partners in decision-making processes” Authors : Pallás Alonso C, Westrup B, Kuhn P, Daly M, Guerra P

Family Supports Services

“The family receives care in an environment where their socioeconomic, mental

health and spiritual needs are supported”Authors : Westrup B, Kuhn P, Daly M, Guerra P, Bertoncelli N, Damhuis G, Lilliesköld S, Slinning K, Warren I

Translation Into Practice - Antenatal Period

High Risk Pregnancy

• Shattered expectations and self-esteem, emotionally & physically challenging, lonely, isolating.

Supports

• Equitable partner

• Psychological support for high-risk pregnancy mothers

• Peer-to-peer support

• Preparation for preterm delivery

Translation Into Practice - Delivery

Emergency Delivery

• Altered birth experience, frightening, emotionally & physically challenging, helpless, lonely

Supports

• Partnership

• Preparation

• Contingency plan

• Familial emotional support

Translation Into Practice – Life In The Neonatal Unit

• Physical & emotional recovery from the birth · Guilt

• Altered parenting role · Heartache

• Trauma · Helplessness

• Fear · Disconnected

• Passive bystander · Lost

• Confused · Inconsistencies

• Overwhelmed

Translation Into Practice – Life In The Neonatal Unit

• Equitable role

• Information

• Decision making

• Guided participation

• Designated lactation support

• Psychologist (to include access post discharge)

• Social worker

• Patient organisations

• Peer-to-peer support (in-house/external)

• Educational programs

• Post-partum care for mothers

Translation Into Practice - Family Facilities

Home from home.............

• Family accommodation

• Quiet space

• Meals

• Laundry

• Sibling area

• Sibling support services to promote bonding/attachment

Shared Goals & Benefits

• Better cue recognition including pain management

• Reduced length of hospital stay & readmissions

• Improved child behavior & long-term cognitive development

• Enhanced bonding and attachment processes

• Enjoy motherhood

• Competent parents

• Parental confidence

• Reduced stress

• Improved breastfeeding rates

• Better weight gain

• Reduced infection rates

What Parents Say : Jodi Dolezel, Peekaboo ICU Baby

I need to be present..

Please do not tell me to go home and rest, “while I can”. If I say I need to be here, then I need to be here. My heart is

sleeping in that incubator, my hands are empty, and my head can only feel clear if I am by my baby’s bedside.

I am grieving …

This is not what I had planned and dreamed about. My hopes for a healthy and natural delivery

were crushed by this unknown NICU world. Please be patient and kind while I try to grasp what

all this means, and while I mourn the loss of a normal pregnancy and delivery. This is supposed

to be a happy time. I will get there but if I am not ready yet, please understand.

What Parents Say : Jodi Dolezel, Peekaboo ICU Baby

I feel lost…

The NICU is somewhere I never expected to be and seeing my baby struggle is the hardest thing I have had to face as a

parent. This roller coaster ride is tough. Please be there for me if I need you. You may not know what to say and that’s

okay. Just knowing that I have your support if I need it can make all the difference to me on the hard days.

I need to be part of my baby’s team…

I may not be a medical professional, and this may be the first NICU baby I have been around,

but this is my baby and I need to be included in the care and decision making on a daily basis.

Please respect this important aspect and see my baby not only as your patient, but as a child

that is loved beyond measure.

What Parents Say : Jodi Dolezel, Peekaboo ICU Baby

I will learn….

I may not completely understand everything that is going on. If I don’t, teach me. I need to learn. Please take the time to

help me so that I can be the very best advocate for my baby, not only while in your care in the NICU, but what I need to

know to meet my baby’s needs once we are discharged from the hospital.

Let me be a parent…

I know I may take more time to do the little things like change a diaper or take a temperature, but if you encourage me to

do these tasks for my baby, I will feel more connected and comfortable. These moments will be my memories, memories I

will cherish for a lifetime.

What Parents Say : Jodi Dolezel, Peekaboo ICU Baby

Please be consistent…

I understand that the NICU has a vast array of staff; from nurses with different backgrounds and philosophies, doctors and

therapists who I may only see from time to time. But if you can all get on the same page when it comes to the care of my

baby, I won’t feel so lost and confused with the expectations and the goals for me and my child.

I need to trust you…

I have handed over the most precious gift that I have been given, to you.

I know that you are only human too, but I need to know that you will do

everything in your power to make my baby well, to grow and to succeed.

Please treat my child like they are one of your own and know that I will be

forever grateful for the love and care you show while you work.

What Parents Say : Jodi Dolezel, Peekaboo ICU Baby

I have hope…

I don’t really want to hear the statistics all the time. They scare me. They cut the thread that ties my hopes to my dreams. I

understand I need to know when things are bad, but please remember I also need to know when things are good. Please

don’t just break the bad news to me, but help me mend my heart with the happy stuff too.

I thank you…

For every bit of what you do. For every aspect of what you give.

For every day of yours you dedicate to my child. The NICU is

tough and no parent wants to be behind its doors, but I am happy

that it exists, that you are here, and that you work hard every day

not only to help my baby survive, but thrive.

Thank you very much for your attention!

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