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Adult CNS Meets Child Life:

What to do for Child Visitors

in the Adult ICU!

Myra Cook MSN, RN, ACNS-BC,CCRN-CSC Clinical Nurse Specialist/ APRN Coordinator

Cardiovascular ICU, Heart & Lung Transplant Unit

This presenter has no conflicts of interest or disclosures

Objectives

• Discuss strategies and resources needed to develop a

Children of Adult Patients (CoAP) program

• Describe research findings related to child experiences and

needs while visiting the adult intensive care unit

• Discuss evidenced based interventions to meet the needs of

children visiting critically ill adult patients

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• Family-Centered Care

• Patient Experience

• Employee Engagement

Literature Review: Barriers

• Parents restrict child visitation based on fear

• Nurses/physicians restrict visitation based on concerns of possible

negative consequences:

Infection control concerns

Emotional harm to children

Adverse effect on patient

• No evidence found in the literature to validate these concerns

(Clarke, 2000; Knutsson & Bergbom, 2007)

Literature Review: Patients

• Helps to “instill hope, re-orients them to the outside world and encourages them to fight”

• Helps to restore a sense of normalcy; maintain identify

“Having them near was good… Afterwards I've realized this meant a lot to me…their presence made me feel safe”

(Engström & Söderberg, 2007; Hupcey, 2000)

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Literature Review: Children

• Benefits to children:

Increase understanding and participation in crisis

Decrease in feelings of “helplessness, guilt, separation and abandonment”

Reassurance

Decrease in misconceptions

Support during a time of uncertainty

(Clarke, 2000; Hanley & Piazza, 2012; Kean, 2010; Knuttson & Bergbomb 2015)

Literature Review: Nursing

• Lack of written policies and resources

• Lack of nursing education

• Lack of research in this area to guide nursing practice

(Clarke, 2001; Vint, 2005)

Our Story….

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Background

• Visitation policy change (2011)

• number of child visits in the adult ICUs

• request for Child Life services

• Growing concern: impact of visitation on children

Nursing

Child Life

CVICU Study: Family Interviews

• Qualitative, IRB approved

• 12 families (22 children)

Five Emergent themes:

1. Prepare children for visitation

2. Help parents to educate/prepare children

3. Provide activities/distraction

4. Prepare environment

5. Responses to child visit

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CVICU Study: Family Interviews

• “Trying to prepare yourself and your child is hard.”

• “Have someone designated to explain things on her

level. As parents, we don’t always know how to do

that.”

ICU Caregiver Survey

Of 266 respondents…

42% Do not believe needs of child

visitors in ICU are being met

73% Do not have the resources in

their unit to meet the emotional needs

of child visitors

ICU Caregiver Survey

80% Have not received training on

meeting the needs of children visiting

an ICU

83% Have not received training on

providing bereavement support to

children of dying patients

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Development of Children of Adult Patients Program (CoAP)

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•Healthcare professionals who help children and their families

cope with medical experiences associated with

hospitalization and illness

•Educated in Child Development, Family Systems Child Life

•Certified by the Association of Child Life Professionals

Child Life Specialists

Children of Adult Patients Program

Child life specialists (CLS) program lead:

• Unit needs assessment

• Consultation services

• Clinician education

• Patient and family resources

• Inter-professional collaboration:

oPalliative medicine

oSocial work

oCase Management

• Four CLS hired

− Two FTEs- main campus adult ICUs

− Two 0.5 FTEs- regional hospitals

• Started June 2016

• So far (main campus adult ICUs):

• # of consults: 68

• # of interventions: 116

Children of Adult Patient

Program (CoAP)

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The Business Case

• Alignment with organizational mission/goals

• Financial Analysis

• Market Analysis

• SWOT Analysis

• Implementation plan/ timeline

• Tracking mechanisms

Implementation Plan

• Identify stakeholders

• Work with human resources to identify job description

• Interview, hire, and orient qualified CLS

• Establish policy/procedure for CoAP Program

• Work with IT to develop EMR templates and screening

questions for referral appropriateness

• Develop program awareness and training plan

• Establish go live date

Monitor/Tracking

• Number of monthly referrals

• Location/time of referrals (highest need

areas)

• Pre/post Caregiver survey

• Press Ganey ICU scores

• Annual employee engagement

• Patient/family anecdotals

• Monitor program expense

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If urgent, please page and place EPIC

Consult. Non-urgent just EPIC consult is

needed.

Very important! The patient/family must be informed and consent to child life consult for consult to be

answered.

Reasons to Consult Child Life

• Education for a new diagnosis

• Changes in quality of life

• Preparation for visiting ICU

• Navigation of challenging conversations

• Emotional Support of patient and/or patient’s children

• End-of-life and grief issues

Resources

• Patient Education Sheets

• Resources on intranet for

providers

• Educational module

• ICU Activity Book

• iBook

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Child Life Interventions at End-of-Life

• Thumb prints/ Hand

prints

• Legacy Bracelets

• Memory Journals

• Recordings

Preparing Children for the End-of-Life

• Child should be told as soon as possible

− In environment they feel safe by a trusted caregiver

• Concrete wording

−Euphemism can create confusion

• Preparation

• Dedicated support person

• Caregivers should check for understanding

Preparation for End-of-Life Visit

Questions for Nurse:

How might this patient’s room look to a child?

What can I put away?

Closing doors/curtains to other patients’ rooms.

Could the caregiver or family put on soft music?

Special items from home?

Does the child have a support person?

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What to say

“Is there anything you’d like to do for your dad to say good-bye that I can help with you?”

“Would you like water or can I help you get

something to eat?”

“I wish there is more we could have done.

I’m very sorry for your loss.”

“It was a honor to care for your mom. She was such a kind woman. “

Conclusion

• Emerging literature demonstrates the benefits of child visitation

• ICUs across the country are expanding visitation policies to include children

• Nurses lack the knowledge and resources needed to meet the needs of child visitors

• A CoAP program can help provide support and meet the needs of children during their loved one’s critical illness or end of life

Myra Cook

cookm3@ccf.org

Thank You!!

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References Bibace, R., & Walsh, M. (1980). Development of children’s concepts of illness. Pediatrics, 66(6), 912–917.

Clarke, C. M. (2000), Children visiting family and friends on adult intensive care units: the nurses’ perspective. Journal of Advanced Nursing, 31: 330–338. doi:10.1046/j.1365-2648.2000.01293.x

Clarke, C., Harrison, D.( 2001), The needs of children visiting on adult intensive care units: a review of the literature and recommendations for practice. Journal of Advanced Nursing, 34:61–68.

Craft, M., Cohen, M., Titler, M., Dehammer, M. (1993). Experiences in children of critically ill parents: a time of emotional disruption and need for support. Critical Care Nursing Q, 16:64–71.

Engström, Å. and Söderberg, S. (2007), Receiving power through confirmation: the meaning of close relatives for people who have been critically ill. Journal of Advanced Nursing, 59: 569–576. doi:10.1111/j.1365-2648.2007.04336.x

Fitzgerald, H. (1992). The grieving child: A parent’s guide. New York, NY: Fireside.

Hanley, J. B., & Piazza, J. (2012). A visit to the intensive care unit: A family-centered culture change to facilitate pediatric visitation in an adult intensive care unit. Critical Care Nursing Quarterly, 35(1), 113-122. http://dx.doi.org/10.1097/CNQ.0b013e31823b1ecd.

Hupcey, J. E. (2000), Feeling Safe: The Psychosocial Needs of ICU Patients. Journal of Nursing Scholarship, 32: 361–367. doi:10.1111/j.1547-5069.2000.00361.x

Kean, S. (2010), Children and young people visiting an adult intensive care unit. Journal of Advanced Nursing, 66: 868–877. doi:10.1111/j.1365-2648.2009.05252.x

Kean, S. (2010), Children and young people’s strategies to access information during a family member’s critical illness. Journal of Clinical Nursing, 19: 266–274. doi:10.1111/j.1365-2702.2009.02837.x

References Knutsson, S., & Bergbom, I. (2016). Children's thoughts and feelings related to visiting critically ill relatives in an adult ICU: A qualitative study. Intensive and Critical Care Nursing, 32, 33-41. http://dx.doi.org/10.1016/j.iccn.2015.07.007

Monroe, B., Kraus, F. (1996). Children and loss. British Journal of Hospital Medicine. 1996;56:260–264.

Rollins, J. A., Bolig, R., & Machan, C. C. (2005). Meeting children's psychosocial needs across the

health-care continuum. Austin, TX: Pro-ed.

McCue, K., & Bonn, R. (2011). How to help children through a parent’s serious illness: supportive, practical

advice from a leading child life specialist (2nd ed.). New York, New York: St. Martin’s Press.

Perrin, E., & Perrin, J. (1983). Clinicians’ assessments of children’s understanding of illness. The American

Journal of Diseases of Children, 137, 874–878.

Romer, G., Barkmann, C., Schulte-Markwort, M., Thomalla, G., & Riedesser, P. (2002). Children of Somatically ill

parents: A methodological review. Clinical Child Psychology and Psychiatry, 7(1), 17–38.

doi:10.1177/1359104502007001003

Sahler, O. (2000). The Child and Death. Pedatrics in Review, 21(10), 350-353.

The Joint Commission: Advancing Effective Communication, Cultural Competence, and Patient- and

Family-Centered Care: A Roadmap for Hospitals. Oakbrook Terrace, IL: The Joint Commission, 2010.

Warnick, A. (2015, July). Don't use the 'D' word: Exploring myths about children and death.

Retrieved February 13, 2017, from Candian Virtual Hospice website: http://www.virtualhospice.ca/

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