Welcome NICU Consortium Education Program January 30, 2019 - - PDF document

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Welcome NICU Consortium Education Program

January 30, 2019 Focusing on Fathers

9:00 am Welcome and Announcements 9:15 am “Teen Fathers: The Forgotten Parent” Rick Ellsmore, Glass Hearts Founder & Program Director

Children’s CAMP Clinic , Fatherhood Coordinator

10:15 am Break 10:30 am “Supporting the Dads during and after the NICU”. John R. Holmberg, Psy.D. PC

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NICU Consortium Membership

Please support us in continuing to provide these educational programs related to the care of premature, medically fragile, and at-risk families. Sign up at the Special Kids, Special Care

• website. www.specialkids-specialcare.org

NICU Consortium Partnership Meeting – February 22, 2019 10 am to 12 noon

Jefferson County Health Department, 945 Parfet St., Lakewood, CO 80215 Join us to learn about our programs and activities and how you can become involved in supporting our efforts to support families of premature and medically fragile infants.

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Glass Hearts

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Please write questions down for Q & A at the end

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Jakob Merle Ellsmore

• Born @ PSL NICU
• Birth photo at 24 weeks
• 1.12 pounds
• 123 days in NICU

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Glass Hearts Focus

We all have glass hearts, scarred hearts, that have been broken in some way. It is in community that these unique broken shards can be gathered and meticulously melded back together.

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Glass Hearts Focus

In the end, it is empathy and love that serves as a glazier that connects our wounded hearts, building them into a stained glass masterpiece—a community of complex

• mosaics. This arduous, but

beautiful process brings wholeness and joins us together to form a diverse and profound community.

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Glass Hearts Focus

• Young/New Dads ages 16-21
• Focus is on emotional & social areas
• Meet at Moorhead Rec Center in Aurora
• 16 week empathy-based curriculum focusing on:
• Manhood
• Fatherhood
• Emotions
• Communication

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Children’s Hospital

• Young Moms Clinic
• Moms age out at 21
• Connect with dads (ages 15-

30)

• Use Glass Hearts curriculum

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Fatherhood Focus

• Understanding empathy so

you treat your child,

• thers, and yourself kindly
• Learn to love/accept

yourself so you can fully love your child

• Try to live by the

Golden/Platinum Rule

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Caleb’s Story

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Gaps in Service

• All areas of society
• No longer teaching
• Little encouragement
• 80% reality

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American Fatherhood

Extremely important to identity

• 57% dads
• 58% moms

Childcare time

• 10 hours in 2016
• 4 hours in 1965

Household chores

• 14 hours in 2016
• 4 hours in 1965

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Q & A

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The Critical Questions

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Fathers?

• How to (do we?) include fathers?
• How to (do we?) make them feel welcome?
• How to (do we?) thank them for showing up?

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Father Inclusion:

• Do fathers need to be involved?
• If so, why? And what difference does it make?
• The need to educate ALL those who come in

contact with NICU parents

• Need to change the “language”
• Affects advertising
• Affects how we answer the phone
• Affects how we welcome & invite into the process
• Affects how we thank dads for their involvement

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“Gift” Dads a New Message

Speak into their fear by helping them understand that they are wanted, and needed, in the process of birth, postpartum, and over their child’s life— Lifetime Fatherhood!

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Jakob Merle Ellsmore

• 17 years old
• Healthy
• CareerWise Program
• Graphic Design

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Have an awesome day!

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Rick Ellsmore

• Grew up in Alaska
• Fathering experience
• Healed/healing process

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Watch for the Education Calendar February 2019

Promoting Parent-Child Relationships Scales (NCAST) Centennial, Colorado

• Feeding Scale Assessment Certification

April 26, May 3, May 10 and June 7, 2019 8:30 am to 4:30 pm

• Teaching Scale Assessment Certification

July 26, August 2 and August 9, 2019 8:30 am to 4:30 pm

Zoya Dickins Miller Neonatal Conference

Mary 1, 2019 8:00 am to 3:15 pm Neonatal Feeding Challenges Penrose House Conference Center, Carriage House, Colorado Springs

Infant and Family Trauma: Spotlight on Families, Systems and Reflective Practice

March 9 - 10, 2019 9:00 am to 5:00 pm The Mariposa Center for Infant, Child and Families, Systems and Reflective Practice Denver, CO

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http://www.huffingtonpost.com/entry/45-photos-of-parents-that-capture-their-emotional-nicu-journeys_us_56421939e4b0b24aee4bdce2? https://www.today.com/parents/dwayne-rock-johnson-tweets-about-skin-skin-baby-t127824

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John Holmberg, Psy.D.

Dr.John@ChildFamilyPsych.org ChildFamilyPsych.org and RealMensCounseling.com 303.503.4448

• Clinical psychologist
• Training
• CU Boulder, Baylor University, Yale University - Child Study Center, CU Health Sciences
• Complementary practice specialties
• Men and Dads
• Men’s transition to fathering, prenatal & post-partum depression, fertility, birth trauma,

bereavement and infant loss

• Anxiety, Depression, ADHD, alcohol/cannabis/substance misuse infidelity, anger

management, career re-direct, life change adjustment, divorce/family transitions, child/teen/young adult parent guidance

• Child & Adolescent Psychology
• ADHD, Depression, Anxiety, school & learning challenges, social difficulties, family

transitions, grief, young adult failure-to-launch

• NICU specific experiences
• Working with many families around developmental assessments for their premature and LBW

babies during Fellowship

• Counseling dads, after complicated births and NICU experiences
• 1st hand stories about my wife and sister-in-law, twins - NICU graduates in the 1970’s

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GOAL: Increased Support for Parents and Babies Experiencing NICU

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GOAL: Increased Support for NICU Parents and Babies

• 1. Context –

Phenomenon

• f transition

to fathering for men

• 2. Potentially

avoidable negative

• utcomes from

NICU time

• 4. Growing

literature on interventions

Pilot Studies Screening tools

• 3. Strategies

cited as clinically helpful

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Case Example – the Intro

Buck –

• Became a tax attorney, in part, because of the predictability and flow of the work
• He & his wife planned their first pregnancy so the birth would fall into the month of May
• Their daughter was born exactly on the expended date of birth, exactly as planned

– down to the meal provided at the hospital

• They waited precisely 16 months to try for a second

pregnancy so the birth could coincided with his becoming a partner in his firm (and he could slow down with the volume of work and be more engaged with the family)… they were pregnant right away

• At their 33-week prenatal follow-up, his wife

developed acute complications and they were taken by ambulance to the closest hospital

• During the birth, his wife had to be resuscitated twice
• His son experienced respiratory distress but was
• therwise healthy and relatively heavy for his estimated

weeks of gestation

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GOAL: Increased Support for NICU Parents and Babies

• 1. Context –

Phenomenon

• f transition

to fathering for men

• 2. Potentially

avoidable negative

• utcomes from

NICU time

• 4. Growing

literature on interventions

Pilot Studies Screening tools

• 3. Strategies

cited as clinically helpful

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Transition to Parenting - Guys

• Phenomenology
• Men’s sense of pregnancy tends to be more abstract
• Seldom do men articulate having children as part of their life plan – expected

but less specific and concrete

• Few social rituals (and classes) for men around preg. & childbirth
• Greater variation in men’s age at birth, less likely to feel part of a cohort
• Men’s sense of bonding with the baby tends to emerge (a bit) later
• Fathers, especially resident fathers, experience many (unanticipated) life

changes after the birth of a child

• New roles, responsibilities, restrictions, daily routines and revision of all

existing relationships

• Co-parenting is a key new role to be negotiated
• Persistent stress with few immediate rewards
• Restructuring of one’s sense of self and priorities
• Shifting cultural expectations around gender roles and infant care
• “not at all like my father/grandfather parented”

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Transition to Parenting – Guys =

Heterogeneity or Heterogeneous

DEFINTION: Not a single unified group, representative of lots of variation, great diversity a mish-mash, a mix-up, a potpourri

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Key Features of Paternal Heterogeneity Associated with Fathers Experiences

• Demographic factors, often moderators, are very important
• Marriage & Cohabitation
• Age (of the mom & of the dad)
• 1st time paternal caregiver vs. caring for other children
• Prior NICU experiences – self or close family
• Prior child care experience, especially infant care
• Education, Felony, Work, Legal Resident, Poverty
• Religiosity
• Micro-Culture – e.g., acceptability or expectable “multi-partner fertility”
• Prior sx of depression, anxiety, substance/alcohol misuse/abuse
• Maternal gatekeeping (or family gatekeeping e.g. Abuelita)

2/1/2019 32 http://babyblues.com/comic_tag/take-over/

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Typically, well Intentioned… but still Family Gatekeeping

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Key Features of Paternal Heterogeneity Associated with Fathers Experiences

• Demographic factors, often moderators, are very important
• Marriage & Cohabitation
• Age (of the mom & of the dad)
• 1st time paternal caregiver vs. caring for other children
• Prior NICU experiences – self or close family
• Prior child care experience, especially infant care
• Education, Felony, Work, Legal Resident, Poverty
• Religiosity
• Micro-Culture – e.g., acceptability or expectable “multi-partner fertility”
• Prior sx of depression, anxiety, substance/alcohol misuse/abuse
• Maternal (or family e.g. Abuelita) gatekeeping
• Keep in mind a fair number of caregivers will not be the biological father
• Boyfriends
• Sperm-donor recipient partners
• Same-sex partners

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GOAL: Increased Support for NICU Parents and Babies

• 1. Context –

Phenomenon

• f transition

to fathering for men

• 2. Risks,

barriers, & negative

• utcomes from

NICU time

• 4. Growing

literature on interventions

Pilot Studies Screening tools

• 3. Strategies

cited as clinically helpful

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From studies of new dads, many new fathers aren’t functioning super well themselves

(e.g., Everett, Bullock, et al, 2006)

• Men rarely go to the doctor (or seek help) for … anything
• Identified health problems among a cohort of new fathers –
• Alcohol (binging) and substance misuse (30%)
• Many smoke (49%)
• Almost all have poor diets (95%)
• Very low rates of exercise (30%)
• High BMI (27%)
• 48% of their sample had 5 or more risks

Risks/Obstacles For How Fathers Navigate the NICU Experience

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Barriers

• Fathers often have to return to work well before the baby can come home
• Can be very difficult to get to NICU, esp. during clinic hours/after rounds
• Fathers from impoverished communities may have low/inconsistent pay,

limited/no sick time benefits or job security

• Every hour at NICU is more than an hour they are not getting paid
• Many fathers have witnessed and/or experienced trauma well before the

pregnancy, the majority of which has not been discussed or processed emotionally

• Adverse birth events including an unexpected fragile baby can be incredibly

traumatizing for fathers

• Fathers are not routinely assessed for mental health problems in any social or

medical context

• Being involved in a care system with hierarchy of authority and wide range of

specialists can very foreign and intimidating

(e.g., Everett, Bullock, et al, 2006; Fletcher, 2009; Keuhn, 2006; Walters, 1997)

Father Risks/Obstacles to Navigating the NICU Experience

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Barriers

• Even among NICU dads – there are widely varied experiences based on the

infant(s) and mom

• Multiples
• Degree of prematurity
• Birth weight
• Birth injuries
• Infant illnesses
• Congenital conditions
• Mom’s health and functional status

(e.g., Ireland, Khashu, et al, 2016)

Father Risks/Obstacles to Navigating the NICU Experience

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• Associated negative outcomes for dads
• Many times onset of symptoms is well later than the event, later than mom’s symptom

development

• High stress (obviously) / Acute Stress Disorder
• PTSD – prevalence of 1/3 in some samples; dads 3x more likely than moms to meet dx PTSD
• Depression
• Generalize Anxiety & Panic Disorders
• Alcohol and substance misuse/abuse
• Reduced sense of control over their lives (i.e., Locus of Control)
• Reduced sense of parenting confidence
• Increased marital distress, perhaps risk for divorce
• Trouble with baby bonding and soothing
• Develop negative attributions about the baby due to unexpected appearance & behaviors
• KEY - Parental wellbeing and freedom from psychopathology is

associated with better interactions with & outcomes for the baby

(e.g., Ireland, Khashu, et al, 2016; Shaw, Bernard, et al, 2009; Sloan, Rowe & Jones, 2008; Treyvaud, 2013; Walmsley & Jones, 2016)

Potentially avoidable negative outcomes for fathers related to the NICU experience

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Narratives of NICU Fathers - In the NICU, hope is like oxygen, sometimes its hard to breathe

• NICU dads described feeling:
• Out of control, out of their depths, lost
• Fragile and vulnerable, traumatized
• Panicked about the unknown, at times hopeless

and helpless

• Volatile – “the worst possible roller coaster”
• Frustrated
• Grounded when baby is sleeping on them, skin

to skin

• Sad, sense of loss - experience not being what

you expected or wanted

• Left out, treated like an accessory to mom, not

the other parent

• Being torn between countless people and things

that need all of you, all the time (i.e., partner, baby, other children, work, bills, the rest of your life)

• Desperate need for information - finding

excessively complex, incomplete, contradictory and unsatisfying answers

http://dadgab.com/an-honest-and-touching-account-of-becoming-a-dad/

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“The path through the NICU can be desperately lonely and the community of people who truly understand is exceptionally small”

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GOAL: Increased Support for NICU Parents and Babies

• 1. Context –

Phenomenon

• f transition

to fathering for men

• 2. Potentially

avoidable negative

• utcomes from

NICU time

• 4. Growing

literature on interventions

Pilot Studies Screening tools

• 3. Strategies

cited as clinically helpful

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Assert yourself

Remember all the staff are well trained and, typically, warm and amazing people! Introduce yourself (as Dad) to everyone involved in your baby’s care - doctors, nurses, techs and staff – including janitorial Advocate to be involved with all aspects of baby’s/babies’ care Ask lots of questions, ask for clarification in lay terms

Be like Dwayne The Rock Johnson – infant skin-to-skin (Kangaroo) care is magical for the parent and the baby Like on airplanes - Put your oxygen mask on before trying to help others – emphasize self-care (i.e., sleep, eating, attending to other parts of your life, breaks from the stress) Vary your visits – with mom sometimes, on your own; after/before work/evenings Yes, you want information BUT the internet is a double-edged sword Don’t get lost in the dark hole – the Web doesn’t know your baby Consider connecting with the other dads on the unit Monitor your frustration and overwhelm – When it gets the best of you - Put yourself on time-out; then, apologize Capture positive movements – mental notes, photos, writing journals or poems Don’t forget your baby needs you to invest in your intimate relationship and parenting team Reconnect (or a first connection) with your faith. Talk with spiritual leader(s), especially those at the hospital Consider outside support, now and later Psychologist/social worker/counselor/therapist Parent to parent support groups

Tips identified by NICU Dad Grads -

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Web Resources & Supports

NICU dad veterans are out there and want to offer advice and support…

http://www.nicu-pedia.com/blog/6-nicu-dads https://www.pinterest.com/dallaspreemies/nicu-dads/ http://www.twiniversity.com/2015/06/surviving-the-nicu-a- dads-perspective/

Example web and app resources

http://handtohold.org/nicu-resource-library/ https://www.caringbridge.org/ - private mini-site to regularly update your family/friends http://grahamsfoundation.org/mypreemie-app/ NICU-Words App https://www.facebook.com/PapasOfPreemies/

Group dedicated to increasing awareness about the experience of parenting premature babies and all that life brings after the NICU Again - external & professional supports

• Leaders from your spiritual community
• Hospital and parent-parent support groups
• http://www.preemiecare.org/supportgroups.htm#CO
• NICU-informed counselors & therapists

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Things for NICU Administration and Staff to Consider

Establish open visitation times and communicate to dads that they can come whenever they can make it – Babies can’t tell time anyway Create and offer simplified, multi-lingual, materials – handout/pamphlet/webpage/streaming PowerPoints – are greatly valued by dads/partners Schedule regular (at least annual) updates to materials for families and resource lists

Fathers services in particular are very hard to develop and maintain due to limited Federal and philanthropic priorities to provide services for men

Regular re-training of staff on how to support parents, especially needed for new to the NICU staff Grapple with the HIPAA need for confidentiality and the family’s need to know you know who they are and can help them and help them connect with other families Remind graduating parents that the journey doesn’t end at discharge and encourage them to seek out professional resources in an on-going fashion Important work is emerging in the literature

Screening tools and pilot project reports are starting to be published Use that work as your springboard Reach out to content experts Remember to do a “needs assessment” –

work with current and graduated families to ensure people want and use what you’ll offer

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GOAL: Increased Support for NICU Parents and Babies

• 1. Context –

Phenomenon

• f transition

to fathering for men

• 2. Potentially

avoidable negative

• utcomes from

NICU time

• 4. Growing

literature on interventions

Pilot Studies Screening tools

• 3. Strategies

cited as clinically helpful

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Example Screening Tools

NICU dad needs screening tool

• Fathers Support Scale: Neonatal Intensive Unit (FSS:NICU)

Mahon, Albersheim & Holsti (2015)

• Learning About Your Baby – Information about baby’s needs
• Taking Care of Self & Family – Navigating activities of daily living
• Taking Care of Your Baby – Reading cues, meeting needs, seek

help

If worried about a dad’s mental health – send them to primary care or behavioral health for screening

Depression/Anxiety

Beck Depression (BDI) & Beck Anxiety Scakes (BAI) Men’s Depression – Gotland Depression Scale by Zierau et al. (2002) Symptom Checklist – 90 (SCL-90)

PTSD

PTSD Checklist for DSM-5 (PCL-5)

Panic

The Panic Attack Questionnaire (PAC) printed in Norton, Harrison, Hauch, & Rhodes (1985)

Alcohol/Substance Misuse/Abuse

Alcohol, Smoking, & Substance Involvement Screening Test (ASSIST) – World Health Organization

2/1/2019 48 Pilot Project –

Lee, Wang, Lin, Kao (2012) The Effectives of early intervention on paternal stress for fathers of

premature infants admitted to the neonatal intensive care unit. Journal of Advanced Nursing, 1085-1095.

Pilot project elements:

• Identified nursing staff point person to

reach out and respond to the dad’s questions/requests

• Booklet illustrations done by a NICU

mom graduate

• rienting parents on –
• Staff
• NICU equipment and what they

all do

• Common conditions/illnesses for

NICU babies

• Baby care techniques and

importance of skin-skin care

• Self-care reminders

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Lee, Wang, Lin & Kao (2012)

2/1/2019 50 Pilot Project –

Lee, Wang, Lin, Kao (2012) The Effectives of early intervention on paternal stress for fathers of

premature infants admitted to the neonatal intensive care unit. Journal of Advanced Nursing, 1085-1095. Pilot outcomes

• Fathers liked and used the materials
• Fathers felt more supported by nurses
• Reduced stress ratings
• Fathers rated themselves as using the skills in

the booklet more often than did comparison group fathers

2/1/2019 51 Pilot Project

HUG Your Baby Program by Kadivar & Mozafarinia (2013) J Perinat Educ. 2013 Spring; 22(2): 113–119.

Program Elements:

• Recruited Iranian Fathers
• Provided electronic (DVD) information
• n:
• Help
• Understanding newborn behavior

& needs, promoting attachment

• Guidance on parenting behavior
• Outcomes
• Dads liked and used the materials
• Improved knowledge

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Case Example – the midtro

Buck –

• His son spent 16 days in the NICU
• His wife needed several surgeries and was able to return home 4 days after their son but

needed considerable time to recover As they were planning their son’s 2nd birthday, Buck began experiencing

• Intrusive memories of the birth and NICU
• Intrusive dreams
• Panic symptoms
• Preoccupying worry that was difficult to quiet and had little

to do with what was actually happening with his family

• r work
• Difficulty going to work and being out of the house due to

fears of something bad happening to his family

• Found himself falling behind and making mistakes at work
• Drinking multiple glasses of wine at night rather than just on

Saturday night

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Case Example – the outro

Buck –

• 6 counseling sessions focused on:
• Revisiting his PCP for a physical – last one was before their first pregnancy
• At the physical, they decided a trial with an antidepressant with anti-anxiety

effects was important to get Buck back to feeling normal and reduce likelihood of panic episodes

• Brief psychotherapy
• Short term problem solving
• Psychoeducation about trauma and anxiety
• Emotional processing of the events
• Trauma work
• Buck felt like his old self again

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John Holmberg, Psy.D.

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Thank you for joining us. Future meetings: Last Wednesday of the month - 9:00-11:30am

• April 24, 2019
• July 31, 2019
• October 30, 2019

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NICU Consortium Partnership

Leadership Council

Leadership

Chair Petora Manetto-Spratt Co-chair Lisa Hymes Secretary Carolyn Kwerneland Treasurer Beth Cole

Workgroup Chairs

Mental Health - Emily McNeil Capacity Building - Kristin Frank Program Development – Evelin Gomez Family Engagement – Natalie Gates Wilson

Community Representatives

Parents - Amber Minogue JFK Partners - Renee Charlifue-Smith Physicians - Sharon Langendoerfer NICU Consortium Education – Paulina Erices

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Special Kids, Special Care Sign Up

Please use our website: www.specialkids-specialcare.org

• Announcements about future NICU Consortium Meetings, our

education programs and our newsletter

• Our Family Support Programs

 NICU Outreach: Safe Sleep Going Home Program: Wearable Sleep Sac Blanket and safe sleep parent education materials  Family Support Grant - Applications for newborn cribs, respite care, lactation consultation, or other health support services needed by families

• NICU Consortium Membership Link