For this discussion board – start by reviewing the article ‘Voice and Choice’ which can be found in the folder ‘Bioethics’.? After our class meeting on Tuesday you should begin to compose y

A PUBLICATION OF THE ASSOCIATION OF CHILD LIFE PROFESSIONALS SUMMER 2019 | VOL. 37 NO. 3

37 The Border Crisis: Our Ethical Responsibility12 Annette Bonjour: 2019 Mary Barkey

Clinical Excellence Award Recipient9 R is for Research Ethics: Humanizing Qualitative Research Methods

In Focus: Voice and Choice: Upholding Autonomy and Other Critical Ethical Constructs in Pediatrics PAGE 29

SPECIAL ISSUE: Ethics as a Professional Mandate in Child Life

IN THIS ISSUE:

1 Introducing The Journal of Child Life: Psychosocial Theory and Practice

2 Appreciation, Reflections, and the Future

3 Ethics as a Professional Mandate in Child Life

6 Honoring Children in Halthcare: An Ethics Based Approach to Acute Decision Making

9 R is for Research Ethics: Humanizing Qualitative Research Methods

12 Annette Bonjour: 2019 Mary Barkey Clinical Excellence Award Recipient

14 The Ethics Committee of the Child Life Certification Commission

16 The ACLP Code of Ethical Responsibility: Growing with Our Profession

18 An Ethical Focus on Academic Programs and Clinical Internships: Increasing Diversity in our Professional Population

22 Changing Perspectives: The Cost of Child Life

24 Who’s the Boss? Ethical Considerations when Parents Decline Preparation

26 The Ethics of Working in Patients’ Homes: Different Considerations for Community-Based Child Life

37 The Border Crisis: Our Ethical Responsibility

39 Social Media Boundaries: Attitudes and Actions of Beginning Professionals

42 Book Review: The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures

44 Conference Wrap-Up

50 Specialized Resources: Medical Ethics in Child Life

52 Pathways to Professional Inquiry: Locating, Navigating, and Evaluating Empirical Literature

54 Moments from the Past: New Beginnings

CONNECT WITH US

PAGE 12

TABLE OF CONTENTS

PAGE 6

CHILD LIFE FOCUS:

29 Voice and Choice: Upholding Autonomy and Other Critical Ethical Constructs in Pediatrics

ADDRESS: 1820 N. Fort Myer Dr., Suite 520 Arlington, VA 22209

PHONE: (800) 252-4515 (571) 483-4500

FAX: (571) 483-4482 WEB: www.childlife.org EMAIL: [email protected]

EXECUTIVE EDITOR Kathryn Cantrell, PhD, CCLS ASSOCIATE EDITOR Kathleen McCue, MA, LSW, CCLS MANAGING EDITOR Anne Luebering Mohl, PhD, CCLS

Published quarterly in January (Winter issue), April (Spring issue), July (Summer issue), and October (Fall issue). Submission deadlines for consideration for each issue are as follows: Winter: October 1; Spring: January 1; Summer: April 1; Fall: July 1. For more information on submitting articles, please see Submission Guidelines in the ACLP Bulletin section of the ACLP website.

For information on advertising in ACLP Bulletin, please refer to the Advertising page on the ACLP website.

ASSOCIATION OF CHILD LIFE PROFESSIONALS BOARD OF DIRECTORS

PRESIDENT 2019-2020 Jill Koss, MS, CCLS PRESIDENT-ELECT 2019-2020 Kim Stephens, MPA, CCLS IMMEDIATE-PAST PRESIDENT Stephanie Hopkinson, MA, CCLS 2019-2020

SECRETARY 2018–2020 Jenaya Gordon, MA, CCLS , NCC TREASURER 2019–2021 Shawna Grissom, CCLS, CEIM DIRECTOR 2017–2019 Lindsay Heering, MS, CCLS, CTRS DIRECTOR 2017–2019 Teresa Schoell, MA, CCLS DIRECTOR 2018–2020 Jen Sciolla, MS, CTRS, CCLS DIRECTOR 2018–2020 Cara Sisk, PhD, CCLS CANADIAN ASSOCIATION Lois Wolgemuth, CCLS OF CHILD LIFE LEADERS LIAISON 2018–2020

CHILD LIFE CERTIFICATION Bindy Sweett, CCLS COMMISSION CHAIR 2018–2020

CEO Jennifer Lipsey, MA COO Bailey Kasten

To contact a Board member, please visit the ACLP Member Directory.

© 2019 Child Life Council Doing business as the Association of Child Life Professionals (ACLP) All Rights Reserved.

No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, without the prior written permission of the publisher.

For permission requests, contact the publisher: Bailey Kasten, COO Association of Child Life Professionals [email protected]

A PUBLICATION OF THE ASSOCIATION OF CHILD LIFE PROFESSIONALS

SUMMER 2019 | VOL. 37 NO. 3

1ACLP Bulletin SUMMER 2019

Introducing The Journal of Child Life: Psychosocial Theory and Practice

One of the ways child life profes- sionals ensure that their practice is ethically sound is by remain- ing well informed on the latest research, theory, and practice

innovations in the field. But finding research on child life can be a daunting task, as many studies are published in journals developed for other fields including nursing, psychology, and medi- cine. Having our own empirical journal specific to the field of child life guarantees that we have easy access to advancements in evidence-based prac- tice. The editorial team is honored to take time in this special issue to announce the unveiling of a new space for disseminating your latest and greatest ideas. In March 2020, ACLP will launch The Journal of Child Life: Psychosocial Theory and Practice as a biannual publication aimed at housing your writings on original research, theory, program evaluation, and more. ACLP Bulletin will remain a quarterly newsletter but will no longer include Focus as an insert; instead, articles previously published in Focus will be moved to the new journal. The launch is a culmination of years of hard work by the current and past edi- torial teams, the Bulletin Committee and Focus Review Board’s tremendous volunteers, ACLP staff, and the ACLP Board of Directors. We are thrilled to share the results of this work with you and watch the project come to life. Please see our one-page ad on page 5 to learn more about the publication and our call for papers. We encourage you to share your voice with your peers in this exciting new format.

As you begin to brainstorm what to write for

our new publication, look no further than this issue to remain up to date on advancements in the field. This special issue’s theme is “Ethics as a Professional Mandate in Child Life.” We chose the term mandate to emphasize the inevitability of encountering ethical dilemmas in our work. Each day, child life professionals are faced with deci- sions that require us to question how our work protects patients, promotes good, and delivers justice. As we choose which patients to prioritize, which programs to fund, which information to share, we are constantly making decisions that rely on our ethical knowledge and skills. As such,

“it is imperative that all child life professionals understand the basic principles of ethics and how to apply them not only to significant decisions but also to daily healthcare scenarios” (Hannan, 2019, p.6). We anticipate each reader, whether a student, intern, practicing specialist, or veteran in the field, will find something in this issue to expand their ethical understanding. To set the stage, multiple articles cover foundational ethical principles while others provide valuable resources to assist with ethical decision making. In addition, the issue contains in-depth discussions of specific ethical dilemmas including separation at the border, working with families who refuse services, the cost of child life training, and working in patients’ homes. The issue culminates with Emily Margolis, MS, CCLS’s in-depth Focus article exploring variables that impact patient autonomy across healthcare settings. From practical updates to theoretical discussion, we expect you will find something new in our special issue to expand your view on ethics.

REFERENCES

Hannan, A. (2019). Honoring children in healthcare: An ethics- based approach to acute decision making. ACLP Bulletin, 37(3), 6-8.

from the Executive Editor Kathryn Cantrell, PhD, CCLS

Past President’s Reflection Stephanie Hopkinson, MA, CCLS

2 ACLP Bulletin SUMMER 2019

Our engagement with other associations and organizations has given us the

opportunity to contribute to the momentum of change in healthcare, positioning us in

a place where others come to us for our expertise, knowledge, and experience.

Appreciation, Reflections, and the Future

Child life community—what an honor and privilege it was to serve you as president of our association. As I reflect on this year of service, I am grateful to be a part of an association and professional commu-

nity who work so hard to move us forward, and I am inspired every day by the work that is done. ALCP has accomplished so much over the past 12 months and work continues to lead the way in many aspects of child life and healthcare. ACLP’s new strategic plan positions us for where we are going next, with exciting movement already taking place. Committees, task forces, the board of directors, ACLP executive leaders, and ACLP staff continue to work hard with thought, care, and focus. The work over the past several years to create a central system where we can collect data across child life programs is amazing and continues to be an area that we want to build upon. As we continue to enter data in the Child Life Professional Data Center and gather more information, we are well positioned to capture the capacity of impact of our work, tell the sto- ries of services, and advocate for our work using data. The endorsement of academic programs has gotten off to a great start, and more programs continue to be acknowledged for their work. The Patient and Family Experience Committee is working with ACLP staff to design an emotional safety summit, where we will have the opportunity to bring together key stakeholders both inside and outside of ACLP. The opportunity to engage in critical dialogues on the current landscape of all that encompasses emotional safety in pediatric healthcare will help us set the stage for leading the

way in this critical area. Two new position statements have been released: Child Life Practice in Community Based Settings and Child Life Practice with Children of Adult Patients. These statements acknowledge the current work of child life practice in community-based settings. New task forces have been approved: a Clinical Ladder Task Force; a Diversity, Equity and Inclusion Task Force; and a Student Education Task Force. These task forces create opportunities for us to dig deeper into the current trends and needs in child life and support the trajectory of movement forward. Our engagement with other associations and organi- zations has given us the opportunity to contribute to the momentum of change in healthcare, positioning us in a place where others come to us for our expertise, knowledge, and experience.

At ACLP’s annual conference in April, the synergy of our community was seen and felt as participants moved through the hallways, exhibit hall, and sessions. Attendees engaged in thought-provoking conversa- tions and experienced opportunities for learning and growth throughout the conference. Jason Wolfe, CEO and President of the Beryl Institute, shared a motivat- ing keynote address acknowledging our expertise in healthcare and inspiring us in our everyday work with children and families. The Child Life Archives came to life in the exhibit hall this year, and the highlights of our history being displayed allowed us a place to connect with the richness of our past.

Each of our stories connects us together as we strive in our vision of advancing psychosocial care and the emo- tional safety of children, youth, and families impacted by healthcare and significant life events. I am inspired by each of you and the work you do every day to move child life forward. As I end this year of serving as president, I am excited and profoundly honored to pass this leadership onto our next president, Jill Koss, MS, CCLS, and I want to express my deep appreciation to all of the volunteers, staff, and the board of directors for your unwavering commitment to ACLP!

We are ACLP!

3ACLP Bulletin SUMMER 2019

Ethics as a Professional Mandate in Child Life

This issue of ACLP Bulletin marks the middle of the year and provides the perfect opportunity to assess where we are in meeting our annual goals specific to our strategic plan. We are

on a strong trajectory, having created three new task forces (Diversity, Equity, and Inclusion; Stu- dent Education; and Clinical Ladder); approved a new membership structure that will roll out in the fall; nearly doubled our traffic and sales of online content in our new learning management system; and exceeded our registration, exhibitor, and sponsorship goals for our 2019 Annual Child Life Conference. Progress builds excitement and motivates further momentum. The challenge is to temper enthusiasm with a cautionary approach, which oftentimes require patience and a watchful eye on trends to inform next steps forward.

The topic of ethics always produces lively and engaging discussions. Most recently, an ethical issue related to social media arose through a call to action from a few members requesting that ACLP intervene and/or take disciplinary action against some social media users who were posting satirical memes about child life. Specific posts were brought to our attention that were seen by some as characterizing child life specialists, the profession, and/or the association in a derogatory manner. While the content posted may be con- troversial, our fiduciary responsibility supersedes our initial reaction to respond. Protecting the public from entering into a therapeutic rela- tionship with an unqualified practitioner is the main purpose of the CCLS credential. Although Certified Child Life Specialists are obliged to follow the Child Life Certification Commission (CLCC) Code of Ethics, ethical violations can be challenging to define. One consideration CLCC must make when imposing sanctions is whether a patient or family was put in harm’s way because of a Certified Child Life Specialist’s actions. Regard- less of how we may personally feel about this

social media content, it is not injurious to patients and their families.

While some may find such content offensive, dis- tasteful, or potentially harmful to the profession’s or association’s image, ACLP cannot interfere with individuals’ freedom of speech. More so, we should expect and welcome public scrutiny as opposed to reprimanding individuals for their use of their personal social media accounts. This is not to say that we condone such content, but rather, we suggest that, if so inclined, individu- als may comment directly to the creator of the content with which they disagree. This kind of rebuke could make the other party aware of the potential consequences of their social media presence. We also remind members that people (peers, future employers, etc.) may perceive social media content as a reflection on one’s character. Many of us may use sarcasm and wit to commis- erate and connect on occasion; however, creating an environment steeped in it could be toxic and counterproductive.

Another matter that may produce equally lively discussion is related to our heightened focus on diversity, equity, and inclusion. It is relevant in this discussion of ethics because it presents questions of right and wrong. Unfortunately, like many ethical dilemmas, these issues are not clear-cut. However, our ethical obligations compel us to examine the demographics of our membership and the conditions that have kept the profession homogenous. We have a moral imperative to investigate whether our infrastruc- ture discriminates and what adjustments can be made to ensure that all have an equal opportunity to become engaged and successful in the child life community. We must identify factors that have led to our membership being comprised of so many of the same socioeconomic class, race, and gender. We want child life practitioners to be as culturally diverse as their patient populations. As

CEO Shares Jennifer Lipsey, MA

continued on page 4

4 ACLP Bulletin SUMMER 2019

such, we should strive to build a membership more rep- resentative of patients’ and families’ cultural identities. We don’t yet know what possible solutions may exist, but to do nothing except accept the status quo without reflection on its impact on patient engagement would most definitely be wrong.

While the CLCC is actively completing a feasibility study to assess whether to develop an advanced practice certificate/credential, ACLP is also considering other avenues to leadership development. As more leaders look to retire in the upcoming years, we want to ensure that their positions are backfilled by fellow child life professionals. We are considering whether a mechanism

such as a credential or certificate could help hospital administrators recognize that child life specialists have demonstrated mastery of content specific to child life and leadership, making them uniquely qualified for desirable manager/director roles.

Ethics, diversity, leadership development, advanced practice . . . these are only some of the stepping stones before us as we finish 2019. They are topics heavy in gravity that will stretch and challenge us. We will approach them with enthusiasm, diligence, and care, knowing that it is our time to demonstrate our thought leadership, strong community, and commitment to ethical behavior.

continued from page 3

Ethics as a Professional Mandate in Child Life

Milestones The global child life community lost a pioneer of child life in Kenya when child life specialist Jayne Kamau died in the Ethiopian Airlines crash on March 10, 2019. Jayne worked with the Sally Test child life team at the Shoe4Africa Children’s Hospital at Moi Teaching and Referral Hospital in Eldoret, Kenya, and was a founding board member of the Kenya Association of Child Life. Jayne fell in love with child life and used her passion to introduce the profession into a medical culture unfamiliar with it. Jayne was devoted to building the profession within Kenya and across Africa in a locally sustainable way. She was a dynamic presenter at international pediatric oncology conferences about innovative child life supports for retinoblastoma patients in Kenya. Bank Street College of Education awarded Jayne an honorary master’s degree posthumously. Jayne will be sorely missed by her colleagues and friends, who will remember her for her constant support, passionate advocacy, and quiet leadership for greater child life presence across Africa.

The child life world suffered another loss in April of this year, when Charlotte “Charlie” Wallinga passed away. Charlie was instrumental in building the foundation for child life education at the University of Georgia, where she developed the child life program and directed it for more than 25 years. Charlie retired in 2014 after more than 30 years as a faculty member. During her long career, she inspired students to pursue the field of child life and continued to be a supportive presence even during their professional careers in the field. Charlie was a sparkling presence in the department; her voice and laughter bright and loud, and her commitment to her students fierce. Charlie had a vision she fought for regardless of challenges. Her energy, kindness, and spirit were well known among her many colleagues, former students, and friends. Charlie was a true pioneer in child life education and an inspiration to so many. She will be missed.

Sheila Palm, MA, CCLS, recently retired as the child life manager at Children’s Hospitals and Clinics of Minnesota after 43 years of service with this organization and with ACLP. Following her internship at Johns Hopkins Hospital, she began her career at Minneapolis Children’s Medical Center, transforming a three-person program into a staff of 20 members. In 1993, the pediatric hospital merged with Children’s-St. Paul creating Children’s-Minnesota, with Sheila leading the integration of two separate child life programs into a system-wide department. Under her steady and innovative leadership, the staff has grown to a department of over 50 individuals, including music therapy and healing arts, at two pediatric hospitals, four off-site community locations, and pain/palliative programming.

Beyond her work within her own institution, Sheila continually shares her expertise as a consultant on the ACLP Program Review and Development Service. Sheila’s ACLP commitments included time as president and treasurer, as well as significant work on the ACCH/CLC transition task force, certification, clinical supervision, strategic planning, and as a book author. She has been chair and a member of many committees that have moved the profession forward. In retirement, Sheila plans to engage her love of the outdoors and travel.

This new journal, with more robust research content, will be an outgrowth of Focus, which will no longer be a part of ACLP Bulletin in 2020. The editors of The Journal of Child Life: Psychosocial Theory and Practice are seeking the following types of articles: ■■ Quantitative research

■■ Qualitative research

■■

Program development, with pre- and post- implementation data

■■

Substantive, systemic literature reviews

■■ Analysis of theory as applied to child life

F or several years, the Association of Child Life Professionals has been exploring the possibility of having a professional journal.

This goal will become a reality when we launch The Journal of Child Life: Psychosocial Theory and Practice in March 2020 during Child Life Month.

The Journal of Child Life: Psychosocial Theory and Practice

Call for Articles

See Submission Guidelines & Instructions on the ACLP website.

Look for more exciting updates as we roll out The Journal of Child Life: Psychosocial Theory and Practice!

www.childlife.org

Jill Koss, MS, CCLS ACLP President

“ This is an important step in moving the profession forward, and we need your help to make it a success.”

6 ACLP Bulletin SUMMER 2019

HONORING CHILDREN IN HEALTHCARE:

An Ethics-Based Approach to Acute Decision Making Ann Hannan, MT-BC RILEY HOSPITAL FOR CHILDREN, INDIANAPOLIS, IN

Ethical decision mak- ing is complex and multifaceted. Ethical principles can often come into direct con-

flict with each other, presenting unique challenges for healthcare clinicians. When supporting children, families, and colleagues during the hospital experience, it is imperative that all child life professionals understand the basic principles of ethics and how to apply them, not only to significant decisions, but also to daily health- care scenarios.

An introduction to ethical princi- ples includes identifying the four fundamental principles of auton- omy, beneficence, non-maleficence, and justice. In addition to these principles, the concept of veracity and fidelity are integral components to providing balanced delivery of care. The following scenarios will demonstrate each of these princi- ples, how they interact with each other, and how ethically-motivated clinicians can utilize these concepts to distribute clinical intervention, promote resilience in patients and families, and engage in practices to

develop healthy professional rela- tionships and work balance.

The principle of autonomy focuses on the concept of respect for per- sons. With regards to children, this includes evaluating developmental capacity for assent, creating an environment that supports real- istic and consistent choices, and facilitating a balance between the child’s preferences and those of the parents, guardians, and caregivers. Regardless of age and developmen- tal capacity, children should be active participants in their health- care experience, and the child life

Editors’ Introduction to the Special Issue on Ethics

We are very excited to bring you this special issue of ACLP Bulletin, focusing on ethics in the profession of child life. This issue addresses an extensive variety of topics that impact child life professionals at all phases of their careers. Please note that the study and application of ethical principles may be defined in a number of different ways by various authors, and no one particular overview is universally accepted as the only correct or acceptable description of ethics. For example, some ethical theorists assign three major components to ethics, some list four, and some include even more. We hope you will appreciate the diversity of approaches to this topic as presented by our various authors.

7ACLP Bulletin SUMMER 2019

specialist can promote this partici- pation through careful assessment and creative intervention.

When engaging in the delivery of healthcare interventions, each goal contains a component of beneficence: the promotion of good. While there are differing approaches to the philosophy of this concept, ultimately the intention of a child’s plan of care is to maintain or improve the current state from a physical, physiological, psycho- social, emotional, and spiritual perspective.

The quintessential tenant of the Hippocratic Oath is “First, do no harm.” Non-maleficence is the proactive identification of potential harm and active mitigation of this harm. Due to the invasive nature of healthcare intervention, elim- ination of all harm is impossible. For example, life-saving medica- tions and fluids are delivered by a process of venous puncture, which inevitably causes physical pain and the potential for emotional distress related to the child’s perception of the procedure. This process is considered a “harm.” To proac- tively decrease the negative impact of such an intervention, a child life specialist can prepare a child for the impact of an IV placement through developmentally-sensitive preparation and active engagement during and after the procedure to assess physical pain and emotional distress.

The concept of justice in healthcare includes not only the provision of services but also the manner in which each service is provided, including the frequency and inten- sity of each intervention. Child life support is a valuable resource

which is limited by external factors, including the balance between the availability of clinicians and the volume of patients in need. This ethical principle is demons

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