Newsletter
Spring 2022
Introduction Section
Hello PPC Champions,
It seems like time has flown by since we last touched base in our summer newsletter. While everyone continues to be faced with personal and professional challenges as we navigate the ongoing pandemic, we are in awe of all of our colleagues in pediatric palliative care who continue to show up, support, and provide unconditional compassion to their patients and families regardless of the personal stressors they are juggling. Others have continued with their lines of research in the midst of numerous barriers. Please know your commitment to our patients and families does not go unnoticed. We are so proud of all of the members in our SIG. If not for colleagues like you all, our loads would be much heavier to bear.
Since our last newsletter, our SIG has been busy tackling initiatives and promoting awareness of pediatric palliative care. The CPPP Special Issue on Pediatric Palliative Care, End-of-Life, and Bereavement, guest edited by SIG founders Drs. Amanda Thompson and Rachel Kentor, was published this fall (https://doi.apa.org/PsycARTICLES/journal/cpp/9/3). We also celebrated National Hospice and Palliative Care Month in November with a number of initiatives, new and old. Weekly Twitter challenges throughout the month engaged SIG members and our interdisciplinary colleagues alike (favorite PPC-related GIF, anyone?)! Through our second annual “Honoring and Remembering: Lessons, Love, and Legacies” forum, SIG members shared impactful patient stories, meaningful personal reflections, and even poems and songs to remind us of the tremendous meaning and power behind the work we all do every day.
SPPAC is quickly approaching, and we are looking forward to seeing you all at our virtual SIG meeting scheduled for Monday, April 4th at 6 pm EST. Our leadership team is excitedly planning a productive and fun-filled meeting for our group. Please stay tuned for a highlight of the pediatric palliative care work that will be presented at the conference, including a presentation from our 2022 Trainee Poster Award winner!
With warmth and gratitude,
Megan & Rachel
Educational Advocacy Section
Educational Advocacy for Kids with Complex Medical and Developmental Needs
Children with complex medical and developmental needs require additional support and accommodations to meet their medical and learning needs in the educational system. Here, we offer several resources intended to help parents, caregivers and professionals understand and advocate for children’s unique needs.
Global Genes: Advocating for Your Child with a Rare Disease at Their School: This toolkit provides several practical strategies for caregivers of children living with rare conditions that can impact their educational experience. It also offers strategies for caregivers to develop a working relationship with schools to meet the needs of children with complex needs.
School Toolkit: Explaining living with a rare disease to young children: The Rare Disease Day organization developed this toolkit to support caregivers in talking to children and schools about rare disease through storytelling and fun activities.
Center for Parent Information & Resources (CPIR): This national organization offers resources to build caregivers’ knowledge and skills in advocating for optimal educational experiences for children with complex needs. You can Find an Education Advocate by State through CPIR.
Understood: This is an organization that provides guidance to people with unique learning needs, including information about disabilities, education law and policy, and caregiver perspectives.
A Day in Our Shoes: A Day in Our Shoes is an organization led by special education advocate Lisa Lightner that shares information and resources for caregivers of children with disabilities so they can make the best decisions in developing IEPs for their children.
Don’t IEP Alone: A Day in Our Shoes: This Facebook Group, based on ADayInOurShoes.com, is a place for caregivers of children with special needs to connect and share suggestions on parenting and developing IEPs. The Don’t IEP Alone: IEP Podcast is also available to help parents and caregivers with IEPs.
Member Research Spotlight Section: Meghan L. Marsac, Ph.D.
Name: Meghan L. Marsac
Book: “Afraid of the Doctor: Every Parent's Guide to Preventing and Managing Medical Trauma.”
Authors: Meghan L. Marsac (Author), Melissa J. Hogan (Author), John F. Crowley (Foreword)
Twitter: @MeghanMarsac, @AfraidoftheDr
Book Description: “Afraid of the Doctor” is the first book written for parents with the primary goal of equipping them with the knowledge and skills to support their children through medical challenges on a day-to-day basis, with an emphasis on medical trauma—experiences in healthcare that can profoundly affect a child’s response and willingness to even go to the doctor. The challenge of medical trauma is often under-recognized and overlooked in the healthcare system, leaving parents to learn about it and manage it on their own. When parents understand medical trauma and learn strategies to reduce and even prevent it, they become empowered to better care for their child’s emotional and physical health. Readers will find twelve distinct strategies they can implement to help prevent and reduce medical trauma and otherwise support their child while facing medical interventions or a chronic condition. These strategies are illustrated through anecdotes, step-by-step guides, examples, and research evidence. With compassion and empathy, Meghan Marsac and Melissa Hogan offer parents a range of evidence-based strategies so that they can select which tools will work best for their children and their families.
Description: I completed my undergraduate training at Baldwin-Wallace College (a small, wonderful liberal arts college) where I studied Neuroscience Psychology and became very interested in the relationship between physical and mental health. I then completed a clinical psychology PhD program at the University of Toledo, matching at the Children’s Hospital of Philadelphia for a pediatric psychology internship and fellowship. My clinical focus is supporting youth with medical conditions and their families in adjusting to their medical condition and care, preventing or addressing maladaptive emotional reactions to medical care, managing communication with medical teams, and working to optimize compliance with medical treatment. My overarching goal of my program of research is to make medical care better for kids and families. My lab focuses on this goal by examining medical trauma reactions and creating and evaluating interventions to mitigate medical trauma exposure, including the implementation of trauma-informed medical care.
Interview Questions:
1. When did you first realize you wanted to write this book?
"Melissa Hogan, a parent of a child with Hunter Syndrome, reached out to me with the idea of writing the book together. Given my love of creating resources for kids and families and her passion and lived experience as a parent and advocate for her child, I was ready to jump into the book after our first conversation. “Afraid of the Doctor” seemed to be a missing resource that I would have wanted for many of the families that I work with."
2. What was your goal in writing this book?
"The goal of “Afraid of the Doctor” is to provide a resource to empower parents to take an active role in supporting their child’s emotional health needs along with physical health care. We also hope that the book can be used to raise awareness that medical trauma is a significant challenge for many families that needs to be addressed as part of standard medical care."
3. How do you envision pediatric psychologists using this book?
"Pediatric psychologists can advocate to use this book as a universal intervention for the families in their clinics, can recommend it as an additional resource for families they serve, or can integrate it into their care by having families read it and helping them adapt the strategies for their unique needs."
4. As a pediatric psychologist, what do you see as the greatest challenge in caring for children and caregivers experiencing medical trauma?
"Resources and awareness. There is so much need and our mental health resources are very limited. We also are still working to shift our healthcare culture to be aware of what medical trauma is and how to help families manage it."
5. In the book, you introduce the 12 strategies, what was the process in the selecting these strategies?
"We wanted to present a range of strategies that could be implemented without a mental health provider and that had theoretical rationale and / or evidence supporting their use. We also worked to focus on strategies that were practical and concrete and that could be used for a variety of medical challenges."
6. In the book, you introduce an acronym called COACH (collect information, observe the situation, ask questions, choose the strategies, help your child/get help). While you note that the process is not always linear, you present this acronym to help parents move forward when facing medical trauma. Can you speak to us about what influenced your process in defining this approach (e.g., clinical experiences, research literature, your own theoretical orientation)?
"My theoretical orientation centers around behavioral, cognitive behavioral, and trauma-focused cognitive behavioral care. Research reflects a need for communication around medical care within the family and between the family and medical teams and that parents are key in how children recover from challenges. We also know that individual children have unique needs and that not all evidence-based strategies work for every child; thus, we need to understand how each child reacts to specific medical challenges. We used this basic framework and integrated Melissa’s personal experience for how she tried to support her son through care as well as my experiences working clinically with children with medical conditions. And COACH was created!"
Thank you Meghan!
Article Recommendations
Chong PH, Walshe C, Hughes S. A good death in the child with life shortening illness: A qualitative multiple-case study. Palliat Med. Published online July 5, 2021:02692163211027700. doi:10.1177/02692163211027700
Umaretiya PJ, Li A, McGovern A, Ma C, Wolfe J, Bona K. Race, ethnicity, and goal-concordance of end-of-life palliative care in pediatric oncology. Cancer. n/a(n/a). doi:10.1002/cncr.33768
Lau N, O’Daffer A, Yi-Frazier JP, Rosenberg AR. Popular Evidence-Based Commercial Mental Health Apps: Analysis of Engagement, Functionality, Aesthetics, and Information Quality. JMIR Mhealth Uhealth. 2021;9(7):e29689. doi:10.2196/29689
Ketterl TG, Ballard S, Bradford MC, et al. Feasibility and acceptability of a home-based resistance training intervention in adolescent and young adult hematopoietic cell transplant survivors. Pediatric Blood & Cancer. n/a(n/a):e29206. doi:10.1002/pbc.29206
Dionne-Odom JN, Wells RD, Guastaferro K, et al. An early palliative care telehealth coaching intervention to enhance advanced cancer family caregivers’ decision support skills: The CASCADE pilot factorial trial. Journal of Pain and Symptom Management. Published online July 2021:S0885392421004784. doi:10.1016/j.jpainsymman.2021.07.023
Lee BM, Jecker NS, Marron JM, Rosenberg AR. Striving for equity: Patient prioritization during a critical cancer drug shortage. Pediatric Blood & Cancer. n/a(n/a):e29280. doi:10.1002/pbc.29280
Fladeboe KM, O’Donnell MB, Barton KS, et al. A novel combined resilience and advance care planning intervention for adolescents and young adults with advanced cancer: A feasibility and acceptability cohort study. Cancer. Published online August 6, 2021:cncr.33830. doi:10.1002/cncr.33830
Coming soon!
Peer Advisor Program
Friendly reminder that the leadership team is looking to explore interest in the development of a peer advisor program open to all SIG members (from graduate student to advanced career) beginning Spring 2022. If you are interested in participating in this opportunity, please complete the survey here.
Free Webinar: As the student representatives, we would like to invite you to a FREE webinar for psychology trainees to learn about careers in pediatric palliative care. Panelists will discuss their training experiences and provide a “day in the life” view of their clinical and research responsibilities. Zoom link will be circulated via the SIG Listserv later this spring!
To nominate a panelist (or if you're interested in being a panelist yourself), please email us at div54palliativesig@gmail.com.
Welcome to our New Team
Rachel A. Kentor, PhD
Baylor College of Medicine/Texas Children’s Hospital
Megan Schaefer, PhD
Nationwide Children's Hospital
Jill Majeski, PsyD
Upstate Golisano Children's Hospital
Emma Ross-Khatami, PhD
Phoenix Children's Hospital
Sarah McCarthy, PhD, MPH, LP
Research Member-at-Large
Mayo Clinic
Aimee Hildenbrand, PhD
Research Member-at-Large
Nemours Children's Health
Juliana Yanguas, Psy.D.
Johns Hopkins Hospital
Julia Tager, B.A.
University of Wisconsin-Milwaukee
The Palliative Care and End-of-Life Special Interest Group (SIG)
Email: div54palliativesig@gmail.com
Website: https://palliativecareendoflifesig.weebly.com/
Phone: 0000000000
Twitter: @SPP_PallEoL