Lori Ives-Baine, RN, BScN, MN (CPB) Grief Support Coordinator

Paediatric Advanced Care Team The Hospital for Sick Children

Toronto, Ontario Contributor to www.BabyFirst.com

Conflict of Interest: I have no conflict of interest to declare.

Please note that all photos and video have been shared

with you with the express consent of the families involved.

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Goals

Provide context for participants about our roles with families in supporting care of critically ill infants

Consider challenges and facilitators of communication with families

Identify barriers and facilitators to “raising an NICU family”

Provide a few examples of ways to use that ‘village’ To consider ‘culture’ as one of our challenges and

facilitators

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What is a Family?

A basic social unit consisting of parents and their children, considered as a group, whether dwelling together or not

http://dictionary.reference.com/browse/family Today, however, many societies look at family as “whoever the

person defines, whether by blood or other connection” and this may challenge the hospital-based system in looking at the ‘family’ and decision-making within that ‘family’

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What is the Role of a Parent? Basic traditional roles of being a parent are:

nurture and educate children, discipline them, manage home and financially support family.

Modern roles brought an active participation of fathers into their child’s care.

The main idea is that parents role must be child-centered and should aim to provide optimal growth and development of their children, to help them have satisfactory biological, social, psychological and emotional growth.

http://www.lifecho.com/what-is-the-role-of-a-parent-roles-of-being-a-parent/

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What is this “Village”?

A village is a clustered human settlement or community, larger than a hamlet with the population ranging from a few hundred to a few thousand (sometimes tens of thousands)

http://en.wikipedia.org/wiki/Village

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Who is in this Village?

RT

Chaplain

SW

Volunteer

PT

RN

OT MD/Res/Fellow/

NP

Dietician/Lactation

Baby

Parents

Extended family/friends

Admin

Community Partners

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What do We (parts of the village) DO? Medicine- information; organization of care for baby; diagnostics; family meetings;

contact with consultants for additional support; medical recommendations to family; listening ear for the family

Nursing- assessment and care of baby; education about baby with family; integration of family into care of child; listening ear for family

Social work: adjustment counseling; crisis management; resource support; risk and safety assessment; listening ear for family; education about psychosocial issues

Respiratory therapists: assessment and management of respiratory care of baby; education of family about respiratory issues; listening ear for the family

Occupational/physiotherapy: supporting specific developmental needs of baby; assessment of feeding and needs around feeding; education of family related to feeding and developmentally appropriate care of baby; listening ear for the family

Dietician: optimization of nutrition of baby; education of family related to specific feeding issues/strategies; listening ear for the family

Chaplain: spiritual support of family and staff; offering of ritual to support the family/baby; listening ear for the family

Volunteers: support the baby, family and staff in the running of the ‘village’ at no charge to the organization; listening ear for the family

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What Methods Do We Use to Communicate with Families?

Bedside rounds Telephone calls Formal meetings Informal discussions Pictures as explanation Non-verbal communication- motions or pointing USE OF PROFESSIONAL INTERPRETERS (vital if family does not speak

the native language of the team) Newsletters/posters/information boards- usually provided in

English Internet/websites

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What Do We Communicate About?

Diagnosis Prognosis Anticipated length of stay/discharge planning Clinical updates Complications Parents’/parenting expectations Medical error Psychosocial and spiritual issues End-of-life decision-making

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What do Parents Want to Talk About? Their baby Their story

Includes their perceptions of what happened and what is happening

Their FAITH Their fears (Janvier et al, 2008)

Fears of disability Fears of death Grief over the early delivery, traumatic birth or other issues that

brought them to NICU Their hopes and dreams Their worries (Macauley, 2010) Their family, including other children and extended family What will come next...

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What Communication Barriers Might Exist?

Fear (family/staff) Language/culture uncertainty or differences Uncertainty

Of prognosis Of roles

Illness of the baby/illness of the mother Differing opinions of HCP and family or between family

members Distance- of family from baby New language- the language of Health Care

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Who is in this Village?

RT

Chaplain

SW

Volunteer

PT

RN

OT MD/Res/Fellow/

NP

Dietician/Lactation

Baby

Parents

Extended family/friends

Admin

Community Partners

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What about All of These Roles that Families are Exposed To?

Families may be easily confused by the people they meet and the roles they play or don’t play

Necessary roles involved with an individual baby change as their condition changes

People involved in the care of the baby change Parents stay parents, even in death This means……

We need to enable the parenting role to be a strong part of the NICU team from the beginning and share with them of the changes that are happening, eliciting their perspectives

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What Can Facilitate the Raising of an NICU Baby and Family?

Early establishment of roles and expectations Team presence Development of a plan of care and maintenance and

adaptation of that plan consistently by the team Open and consistent communication amongst the team and

with the family Empathy DOCUMENTATION Advocacy with and for parents

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The Literature Says…. (Obeidat, H., Bond, E. & Callister, L. (2009). The parental experience of having an infant in the newborn intensive care unit. The Journal of Perinatal Education, 18(3), 23-29. [systematic review of the research]

Fenwick, Barclay, & Schmied (2001): found positive mother-nurse relationship facilitated sharing on a ‘‘deeper’’ level and increases mother’s confidence, sense of control, and feelings of connection to her infant.

Nystrom & Axelsson (2002): Being an outsider; feelings of despair, powerlessness, disappointment, and lack of control reflected in emotional instability, threat, guilt, and insecurity. The theme of caring included trust, love, anxiety, relief, and closeness.

Callery (2002): felt supervised by Feelings of alienation, despair, and grief; feel they were ‘‘not being a mother’’; the nursery staff and required permission to touch and care for their infant; feelings of distance and detachment.

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The Literature Says…. (Obeidat, H., Bond, E. & Callister, L. (2009). The parental experience of having an infant in the newborn intensive care unit. The Journal of Perinatal Education, 18(3), 23-29. [systematic review of the research]

Hall (2005a): Being in alien world, feeling like a spectator, being vigilant, and

oscillating between hope and hopelessness.

Broedsgaard & Wagner (2005): Mothers emphasized frustration about separation from their infant and lack of knowledge.

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Do We Make Family More than “Visitors”?

We Had Better- it is THEIR child…. However, it may depend on:

Condition of the baby

Comfort of the care giving team (???)

Comfort of the family

Culture of the care giving environment

Acculturation of the family into the environment

Parental strength in self-advocacy Kopelman, 2006

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How Do We Cross this Great Divide?

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How Can We Do This Optimally? Guidance Education

About normal baby care About NICU environment Parenting roles

Role Modeling Environment (be proactive rather than reactive) Information sharing/transparency Encouragement of families to be ACTIVELY involved in every

stage of their baby’s development Kangaroo Care

Cultural/family sensitivity and understanding their needs and expectations

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Kangaroo Care- An Ideal Parent Experience

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http://www.marchofdimes.com/baby/inthenicu_kangaroocare.html

•Improves parent bonding •Improved baby weight gain •Increased EBM and more successful breastfeeding •Regulates baby’s HR and Respirations •Can even be done in a modified way with critically ill babies

The Village- from the perspective of an NICU Graduate

http://www.youtube.com/watch?v=iJd_Yi78Nf4

This YouTube Video was provided with enthusiasm by Emma Christie, age 8, an ex-26 weeker who told her story about what made a difference to her family

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Ways Some Toronto Hospitals Facilitate Family Involvement

Family Advisory Council (SickKids has an NICU Family Advisory Council, Mt. Sinai has Graduate Parent committee)

Parent-parent support Mt. Sinai Parent Buddy Program TLC Program for Stable Patients- CPAP and beyond…

Parent Coordinator Role Sunnybrook has a parent coordinator to assist with adjustment

and role modeling as well as provide non-clinical guidance to families

SickKids Parent Liaison Role- 0.8 FTE Mt. Sinai has 2 part time parent partners- 0.8 FTE

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SickKids NICU Family Advisory Council Graduate parents, with facilitation from NICU staff as part of the

NICU team Involved in ensuring that policies, guidelines and practices in NICU

are supportive of family-centered care Develop and champion family-focused projects- NICU Welcome

Book, the Story and poem Book, our family area and information package- with a parent’s viewpoint

Involvement in education of professionals about including at conferences

Advocated for “Parent Liaison Role” which is now in place

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Valuing the Use of Story-telling- A Book of Rhymes and Stories provided to each NICU

family (SickKids)

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NICU Parent Connection Programs

Alternate names: Parent Partners Parent Liaisons

Parent Coordinators

SickKids NICU Parent Liaison Currently in it’s first year of existence Parent with 3 ex-prems, one who died of NEC at our

hospital but other two are doing well

Involvement with unit committees as parent representation Scrapbooking, parent/family events and activities Working towards an NICU Reunion event

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Sunnybrook Hospital (Toronto) Parent Coordinator Role

Part time- (0.5 FTE, could easily be full time X 4 years)- Kate was the parent of a baby on the NICU at this hospital- offers the parent experience and perspective but not clinical knowledge Goals are to help parents connect with each other and with staff

members To offer emotional support, to support the practice of family-centered

care in the unit and at Sunnybrook including educating staff about parent responses

Offer education/support sessions for parents a week- this becomes a safe space to talk about the difficult issues

To support parents in their role as advocates for their children and families, and to encourage and facilitate moments of celebration and reflection in the NICU

Maintain a Facebook page for families at their site- private group Provide education to staff in orientation

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This also Included Creating & Maintaining Web Site to Make it Family Friendly

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http://www.babyfirst.com/en/neonatal-care/nicu-designs.php

Mt. Sinai Parent Partners

2 part time Parent Partners Roles are similar to those at Sunnybrook and SickKids The two Parent Partners work opposite days to ensure

coverage of their NICU families Link with the Parent Buddy Program that has been set up

at Mt. Sinai for many years

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NICU Parent Buddy Program at Mt. Sinai Hospital (Toronto)

Phone, email and physical presence by trained volunteer graduate parents

Referral for parent buddy to SW coordinator in first week or so- matched by gestational age, culture, geographical area, baby’s condition- not consistent percentage of uptake- depends on the family needs and support resources

Currently at least 50 parents supporting at least 50 parents (small number of dads) Buddies can pull out for any reason/any time Contact with parent is at least weekly- relationship ends naturally

as baby is getting closer to discharge, but a couple of times post-discharge

Felt to be an essential resource for NICU families- validated in the literature (Preyde, Ardal & Bracht, 2001; Preyde & Ardal, 2003).

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What Can Parent-Parent Support Add? Greater confidence in ability to parent and greater

understanding of their infant’s medical condition (Preyde, 2007)

Reduced feelings of isolation (Preyde & Ardal, 2003)

Mothers described less stress than in control group within 4 weeks of involvement with trained parent telephone “buddy” (Preyde & Ardal, 2003).

Reduced state anxiety and depression by standard measurement tools at 16 weeks post-intervention.

Improved advocacy and comfort in social interactions with medical professionals (Preyde, 2007)

Parents feel heard by one who understands- had been in “their shoes” (Preyde & Ardal, 2003; Preyde, 2007)

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Cultural Competence!!! Every individual in a family is unique- we need to

respect this diversity and have an awareness of three types of culture

1. The family’s- their community/family structure and possible spiritual or religious practices

2. Our own- community, family structure and possible spiritual or religious practices

3. Our organization’s culture- how do families fit into this and how do we “function”

We need to use a “teach me” approach and never assume as it makes an A## out of U and Me…

http://www.sickkids.ca/cultural-competence/index.html

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What if there is a “clash of cultures?” Requires ongoing two-way communication and attempts at

understanding from both sides Culture in this aspect might be health care vs. parents, as they

do not have our knowledge or may be spiritual and religious views vs. medical views

Culture may be visible or non-visible Often, the openness will allow both sides to see the

similarities and the differences If the clash continues, bringing in leaders (religious,

community and hospital together) may help or confuse the situation

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Sometimes, the Story Changes- Before Birth or after A Complex NICU Stay…

Changes happen- we need to have awareness of the impact of clinical deterioration or changes in direction of care on the family (Eichner, 1986; Friedrichsen et al, 2001)

We need to find out their perceptions of what is best for THEIR CHILD and LISTEN to their stories

If palliative care or death is the ultimate outcome, we need to ramp up the support already provided (Orfali, 2004)

We need to acknowledge, validate and support PARENTING, GRIEF and LOVE (Hammerman et al, 1997)

We need to be present to their journey and walk along side them, during decision making, discharge planning, palliative care and bereavement and after!

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On behalf of all of the families we guide through their journey of the NICU…… Thank you to each of you for

Your commitment Your attention to detail Your ongoing care of these tiny patients and their families

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References and Resources Christie, E. (2012) http://www.youtube.com/watch?v=iJd_Yi78Nf4 Eikner, S. (1986). Dealing with long-term problems: a parent's perspective. Neonatal Network

- Journal of Neonatal Nursing, 5(2), 45-49. Farlow, B. (2008). Decision to accept disability: one family's perspective. Paediatric and Child

Health, 13(5), 367. Friedrichsen, M. J., Strang, P. M., & Carlsson, M. E. (2001). Receiving bad news: experiences

of family members. Journal of Palliative Care, 17(4), 241-247. Hammerman, C., Kornbluth, E., Lavie, O., Zadka, P., Aboulafia, Y., & Eidelman, A. I. (1997).

Decision-making in the critically ill neonate: cultural background v individual life experiences.[see comment]. Journal of Medical Ethics, 23(3), 164-169.

Janvier, A., Lantos, J., Deschenes, M., Couture, E., Nadeau, S., & Barrington, K. J. (2008). Caregivers attitudes for very premature infants: What if they knew? Acta Paediatrica, International Journal of Paediatrics, 97(3), 276-279.

Kangaroo Mother Care- http://www.kangaroomothercare.com/ Macauley, R. (2010). Clinical case: An overwhelmed parent. Virtual Monitor- AMA Journal of

Ethics, 12(7), 535-539. March of Dimes- http://www.marchofdimes.com/baby/inthenicu_kangaroocare.html Obeidat, H., Bond, E. & Callister, L. (2009). The parental experience of having an infant in the

newborn intensive care unit. The Journal of Perinatal Education, 18(3), 23-29. Orfali, K. (2004). Parental role in medical decision-making: fact or fiction? A comparative

study of ethical dilemmas in French and American neonatal intensive care units. Social Science & Medicine, 58(10), 2009-2022.

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More References and Resources Preyde, M.R., Ardal, A., & Bracht, M. (2001). Mothers’ perceptions of the parent

buddy program: A program for mothers of very preterm, hospitalized infants. Canadian Social Work, 3(2), 43-56.

Preyde, M. & Ardel, F. (2003). Effectiveness of a parent “buddy” program for mothers of very preterm infants in a neonatal intensive care unit. Canadian Medical Association Journal. 168(8), 969-973.

Preyde, M. (2007). Mothers of very preterm infants: perspectives on their situation and culturally a sensitive intervention. Social Work in Health Care. 44(4), 65-81.

www.PreemieWorld.com http://www.sickkids.ca/cultural-competence/index.html http://sunnybrook.ca/content/?page=WB_NIC_Home Tommet, P. A. (2003). Nurse-parent dialogue: illuminating the evolving pattern

of families with children who are medically fragile. Nursing Science Quarterly, 16(3), 239-246.

Workman, E. (2001). Guiding parents through the death of their infant. JOGNN - Journal of Obstetric, Gynecologic, & Neonatal Nursing, 30(6), 569-573. Ives-Baine, 2013 40