Articles on Caring for Adolescents and Young Adults with Serious Illness


#1

Originally published at:
https://courageousparentsnetwork.org/blog/?p=7612

This e-newsletter has been curated and written for pediatric providers but there is much here that we think will be of interest and value to the CPN parent community as well. Link to the PDF below, with excerpts following.

ChiPPS_e-journal_Adolescents&PPC

Scott Newport, Evan’s father
Scott Newport has authored many poems and essays that have been published in our e-Journal and other publications. Scott, a bereaved father whose son Evan died, has found giving back through the parent mentoring program for Mott Children’s Hospital offers its own special grace. Scott often finds himself working directly with patients. Here he shares a glimpse into this most intimate and special work.
Death of a Parent during Adolescence: My Personal Journey

Alexandra Hawkins, Jeff’s daughter

When Alec was 14, her father died from cancer. In this essay, her main thesis is that, “If there’s anything I’ve learned in the near-decade since my dad’s death, it’s that grief is a journey. As I’ve grown up, my grief has grown up with me. The pain of losing my father hasn’t gone away, it’s just gotten easier to manage.” As she writes, “Grief has been a rollercoaster of emotions, with ups and downs, sharp twists, sudden drops, and the lowest of lows.” Some things helped, some things didn’t help, and some things might have helped her “to understand that while every grief journey is different, I am not alone.”

Our Ultra-Marathon

Kathryn Cleberg, Charlie’s Mother

Almost 20 years ago, the author of this article, her husband, and their five children “started on what we anticipated would be a brief and difficult journey” by taking in “A very ill baby boy named Charlie [who] needed a family to love and care for him for what was expected to be the few remaining months of his life.” As the title of this article indicates, “That journey has turned into an ultra-marathon filled with dangerous turns, frightening obstacles, delightful and unexpected gifts, acts of amazing courage, pain, laughter, exhaustion, and countless moments that have taken my breath away.” The courage of everyone involved in this journey is clearly evident in this text.

Douglas House, A “Respice” for Young Adults

Sister Frances Dominica, Chris Bloor, and Mathew O’Sullivan

Helen House, the world’s first children’s hospice, opened in Oxford, England, in 1982. By 20 years later, many of the children being served had become young adults and it was decided to open Douglas House to offer “respite care, symptom control, stepped discharge from hospital, end-of-life care, and long-term family support. Fundamentally, it was an attempt to encourage and enable these young people between the ages of 16 and 35 to live life to the fullest, however long or short that life might be.” In this article, the founder of Helen House, a nurse who has worked at Douglas House for over 9 years, and a “guest” who has received respite care at Douglas House since 2006 each point out what is unique about such a facility, its distinctive philosophy of care, and why it is needed.

What We’ve Learned about Adolescents and Young Adults Who are Grieving

Terri L. Bowling, MS, CT, ACTP

This article describes how a children’s grief center expanded its services to meet the needs of young adults in the 18-30 age group. Boxes describe the feelings these grieving young adults have shared, as well as the challenges and changes they experienced after the death in the midst of their busy life styles, and their strategies for coping.

Adolescents’ Use of Social Media and Digital Technology to Cope with Life-Threatening Illness and Loss: What Parents and Supportive Adults Should Know

Carla J. Sofka, PhD, MSW

Contemporary adolescents are said to be “digital natives,” by contrast with many adults who are “digital immigrants.” Because contemporary adolescents use social media and digital technology on a daily basis, it should be no surprise that these tools are prominent in ways in which such adolescents cope with life-threatening illness and loss. This article offers a primer for parents and supportive adults who wish to learn about and be helpful to contemporary adolescents in navigating the digital universe. The article covers such topics as death notification, gaining emotional and informational support, resources for memorialization and creative expression of grief, continuing bonds with the deceased, funeral selfies, and digital survivor advocacy. The article closes with a list of eight specific suggestions for parents and supportive adults.

Critical Decision-Making for Adolescents with Life-Threatening Illnesses

Marilyn A. Fisher, MD, MS

This article offers guidance on the primary ethical principles that guide medical decision-making for situations involving adults. With that background, the discussion shifts to analogous situations involving younger and older children.

Engaging Adolescents and Young Adults in Decision-Making

Suzanne S. Toce, MD

This article builds on the previous one, covering such topics as: elements of decision-making ability; determining capacity; and engaging adolescents and young adults in decision making. The article also provides a guide to many tools and resources to help in this work.

Where Do We Go from Here: Advance Care Planning and Adolescents

Elizabeth Spellman, MSW, LSW

This article describes the advance planning guide, Voicing my Choices, that was created with input from and specifically for use with adolescents and young adults. Topics covered include: where to begin; be direct; modeling; permission and acknowledgement; and be patient and reengage.

Supporting Sexual Health Needs of Adolescents and Young Adults (AYAS) with Chronic Illness

Kaitlyn M. Fladeboe, MA, Lynn Fainsilber Katz, PhD, and Abby R. Rosenberg, MD, MS, MA

In this article, the authors “discuss the prevalence of sexual behavior and risk-taking among AYAs [adolescents and young adults] with chronic illness, review normative adolescent sexual development, and provide developmentally-informed recommendations for communicating about and supporting AYA sexual health.” Their goal is to minimize risky sexual behaviors among this population in order to avoid additional risk with negative outcomes. In addition to the main text, a table provides for parents and care providers “specific communication strategies for initiating supportive conversations, normalizing and validating experiences, providing individually-relevant information, and asking appropriate questions.

Suzanne S. Toce, MD

Here, Dr. Toce provides a brief summary of a recent article from Pediatrics on “When Bad News Isn’t Necessarily Bad: Recognizing Provider Bias when Sharing Unexpected News.” The summary includes an abstract of the article along with comments for readers about: Who is the audience for this information? What is special about this information and where and how can I apply this information?