Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases
advance care planning; attitude to illness; caregiver; family centered care; parent; parental attitude; pediatric patient; psychosocial care; rare disease; adult; Advance Care Planning; article; body movement; child care; cohort analysis; collaborative care team; content analysis; conversation; disease burden; family decision making; feasibility study; female; human; human relation; palliative therapy; qualitative analysis; social connectedness; videorecording
Few studies have described the goals and wishes of parents caring for their children with rare diseases, specifically when children are unable to communicate their preferences directly. The purpose of this study was to describe the parent's understanding of their child's illness, goals of care, and what mattered most to their child from the parent's perspective. Six families completed a feasibility study of the FAmily CEntered (FACE)-Rare pACP intervention. Qualitative content analysis was performed on transcripts of videotaped responses to the Respecting Choices Next Steps pACP Conversation facilitated conversation guide about the goals of care. Codes were grouped into themes, with direct participant quotations representing the themes. Five themes emerged: getting out and moving freely; feeling included and engaged; managing symptoms and disease burden; coordinating care among many care team members; and managing today and planning for the future. In the context of pACP, families reported that what mattered most to their children included the freedom of movement and human connection and engagement, while parents strived to be effective caregivers and advocates for their child with a rare and severely disabling disease.Copyright © 2022 by the authors. Licensee MDPI, Basel, Switzerland.
Fratantoni K; Livingston J; Schellinger SE; Aoun SM; Lyon ME
Children
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/children9030445" target="_blank" rel="noreferrer noopener">10.3390/children9030445</a>
Angels in the Clouds: Stillbirth and Virtual Cemeteries on 50 YouTube Videos
Photography; Qualitative Studies; Human; Descriptive Statistics; Music; Social Media; User-Computer Interface; Perinatal Death; Mothers -- Psychosocial Factors; Videorecording; Religion and Religions; Burial Practices
Today every aspect of our life is published and shared online, including grief. The virtual cemeteries and social networks' use could be considered as a new modern mortuary ritual. Starting from the keyword stillbirth, 50 videos published on YouTube since 2008 have been analyzed qualitatively. The videos, 70% published by the mother, with an average length of 5.52 minutes, a mean of 2,429,576 views and 2,563 of comments, follow a sort of script: the second part with black and white photos, background music, and religious references. Could the continuous access to the child's technological grave encourage a complicated grief or be a support, given by the interaction with users, limiting the sense of isolation. The parent shows his or her own conceptions about death and, as a modern baptism, presents the child to the whole society. Videos keep child's memory alive and fuel a process of personalization and tenderness in the user.
Sani L; Laurenti Dimanche AC; Bacqué MF
Omega: Journal of Death & Dying
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0030222818824732" target="_blank" rel="noreferrer noopener">10.1177/0030222818824732</a>
Preparing for Good Grief: Grief and Loss in the Hospice and Palliative Context (P07)
bereavement support; child; complicated grief; conference abstract; exercise; hospice; human; learning; palliative therapy; professional practice; program development; risk factor; survivor; videorecording
Objectives: * Describe state of current science and theory related to grief and bereavement. * Discuss variations of grief and strategies to support bereaved individuals. * Identify best practices to support healthy grief in hospice and palliative care contexts. * Identify special needs of unique populations across the lifespan (e.g., children, teens), persons with intellectual disabilities, those experiencing unexpected death of a family member or close friend, or those having complicated grief. * Identify program services and opportunities that utilize current best practices and knowledge within their own agency. Grief and bereavement are universal human experiences, and inevitable outcomes for those who lose a family member or close friend. For hospice and palliative care providers, understanding the complexities of this universal yet individualized experience, and providing support to the bereaved is a critical part of our field. This practical, interactive workshop will provide an overview of current theories, best practices, and approaches to support healthy grief and manage loss in a modern society. Through a variety of learning exercises, including discussion of field experience and current research, case studies, video exercises, and reflections, this presentation will discuss the complexities within the grief experience in hospice and palliative care. Phases of bereavement care needs, including the initial diagnosis, grieving through the disease process, becoming eligible for hospice services, support through the ongoing trajectory of grief, and facilitating access to community supports, will be discussed. Implications for hospice and palliative care inter-professional practice, program planning, and community advocacy will be provided. Special circumstances that challenge bereavement will be identified, including children, teens, survivors of traumatic loss, and risk factors for Prolonged Grief Disorder (PGD). Concerns that can particularly be addressed in the palliative context to support healthy grieving, and gaps in knowledge and services will also be highlighted.
Remke S S; Shukraft A E; Supiano K P; Wladkowski S P
Journal of Pain and Symptom Management
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.018" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.018</a>
National Institute of Nursing Research and MedlinePlus Team Up to Offer a Palliative Care Text Campaign (QI632)
adult; child; conference abstract; e-mail; human; mental health; national health organization; nursing research; palliative therapy; pediatric patient; transcription initiation; videorecording; wellbeing
Objectives: * Apply the principles of plain language to deliver easy-to-understand, evidence-based palliative care information to those with serious illnesses and their families. * Utilize common forms of telecommunications (text messaging and email) to reach English- and Spanish-speaking patients. Background Research has shown that patients who receive palliative care report improvement in pain, nausea, and shortness of breath; communication with their healthcare providers and family members; and emotional support. Aim Statement To increase awareness of palliative care and its benefits for those living with serious illnesses and their families. Methods From February 2018 to February 2019, the National Institute of Nursing Research (NINR) and the National Library of Medicine's MedlinePlus® ran a text message campaign about palliative care. Messages included information for adult and pediatric patients and their families. The campaign also ran in Spanish from February to August 2018. Subscribers received one text message per week. About a month into the campaign, a weekly e-mail option was added. Results 3,143 subscribers signed up for the English text messages, and 944 signed up for the Spanish campaign. An additional 8,004 subscribers signed up for English e-mails, and 9,252 subscribers signed up for Spanish e-mails. The 56 links shared generated 16,039 clicks to NINR and MedlinePlus® content. The average engagement rate of a message was 1%, or only 1% of subscribers clicked the link of any message. The most popular messages were about mental health/emotional wellbeing and new research. Conclusions and Implications A successful campaign is determined by the number of people reached, increased visitors to linked content, attrition, and engagement. The growth was steady and the campaign was successful in gaining new subscribers. Attrition was low; fewer than 10 people unsubscribed. Overall, this campaign was successful in reach, but engagement was low. Implications for practice A future campaign should: a.Include an e-mail option from the beginning to reach a wider audience. b.Focus on engaging content. Create action-based content that elicits a response from subscribers. c.Link only to mobile-friendly pages, not PDFs and videos, since many subscribers are accessing content from mobile devices.
Burroughs A; Lemon A; Coppess S; Miller J
Journal of Pain and Symptom Management
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.241" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.241</a>
Use of electronic media in a pediatric palliative aquatics program: Legacy, teaching, research and caveats
awareness; brother; California; child; conference abstract; documentation; face; female; grief; hearing; heat; hot water; human; literature; male; memory; motion; palliative therapy; pediatrics; photography; physician; sound; teacher; teaching; touch; videorecording; voice
Program Goals: Appropriate use of electronic media in a pediatric palliative care setting enhances a family's experience of care given to their child over time and assists in the grieving process. Here we explore multiple uses of electronic media in a pediatric palliative aquatics program operating within a pediatric palliative care facility in California. Evaluation: Electronic media has changed many facets of daily life, including providing palliative care to medically fragile children. Its use provides families with an "electronic biography" of their child and offers siblings a connection to a brother or sister who might have died before their birth. Oral histories are further supported with video data, thereby providing families with an enduring legacy. Loved ones unable to be present at events in "real time" can enjoy the electronic version of the child's experience. The legacy created in this manner exists beyond the grief of the present moment, extending into a time when painful memories become muted, allowing families to remember joyful events in the child's life. Families can photograph and video the child's responses to aquatic sessions, documenting movements and abilities virtually impossible for the child on land. Information can be shared with pediatric care practitioners using electronic media, providing them with detailed documentation of the patient's responses and enhanced abilities during warm water sessions. Consent is always obtained prior to facility use. As always, precautions against inappropriate use of electronic media during aquatics sessions must be assured. Public use of specific photos and film are sensitively screened for appropriateness. In researching program outcomes, the child ultimately becomes both subject and teacher during palliative aquatic sessions. Individual patient responses to sessions can be documented over time, allowing researchers opportunities to observe in slow motion subtle reactions of the patient to movement and touch. The aquatic practitioner-trainees' sense of touch, sight and hearing becomes more acute as s/he observes a child's facial and body reactions to movement, warmth, water pressure and sound. In our ongoing work of training new practitioners, appropriate use of electronic media and careful documentation of sessions has become one of our most valuable teaching tools.
Pyatt S; Fisher J M
Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Introduction to a Novel Palliative Care Intervention for Family Caregivers of Children and Adolescents Living with Rare Diseases (TH308)
advance care planning; adolescent; pediatrics; feasibility study; palliative therapy; major clinical study; needs assessment; videorecording; caregiver; nonhuman; Human immunodeficiency virus; human experiment; malignant neoplasm; wellbeing; skill; conference abstract; human; child; female; male; controlled study; interview; comorbidity; uncertainty; medical care; social isolation; rare disease; health disparity; rigor
Objectives: *Establish the need for a family caregiver intervention for parents of children with rare diseases.*Introduce the intervention and its components.*Disseminate findings from the piloting of this intervention. In the U.S. a rare disease is defined as a condition affecting fewer than 200,000 persons. Pediatric patients with rare diseases experience high mortality. Pediatric advance care planning (pACP), a key component of pediatric palliative care, has been proven to improve communication and spiritual and emotional well-being for children with cancer and HIV and their families. For providers, pACP, involves preparation and skill development to facilitate discussions about goals of care and future medical care choices. Due to the uncertainty surrounding a rare disease diagnosis, social isolation and the likelihood of parents being asked to make complex medical decisions for their child, rare diseases exact a severe emotional toll on families. There is an urgent need for interventions to ease the suffering of these families, yet few empirically validated interventions exist to address these issues. Moreover, children with rare diseases are a heterogeneous group who because of co-morbidities are often excluded from research, thereby creating a health disparity. Available research lacks scientific rigor. Our consultation with families of children with rare diseases and with the National Organization for Rare Disorders revealed that basic palliative care needs should be addressed prior to a pACP intervention. Thus, we pilot tested the innovative FACE-Rare intervention, integrating two, previously adapted for pediatrics, evidence-based interventions: Carer Support Needs Assessment Tool (Sessions 1 & 2) plus Respecting Choices (Sessions 3 & 4). For acceptability, feasibility and safety purposes, we pilot tested the 4-session intervention, conducted exit interviews, baseline and 2-week post-intervention assessments. This session will review the existing research on the palliative care needs of family caregivers of children with rare diseases, introduce this innovative intervention and its components, disseminate findings from the beta testing and pilot testing, and discuss future directions for research. Video clips will also be presented.
Friebert S; Fratantoni K; Wiener L; Needle J; Fraser J; Gaines J; Alderfer M; Lyon M
Journal of Pain and Symptom Management
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2018.12.037" target="_blank" rel="noreferrer noopener"> 10.1016/j.jpainsymman.2018.12.037</a>
Evaluating Palliative Care Resources Available to the Public Using the Internet and Social Media
Palliative Care; Quality of Life; Human; Emotions; Health Education; Medline; Thematic Analysis; Search Engines; Facebook; Cross Sectional Studies; Health Information Evaluation; Information Seeking Behavior; Internet Utilization; Social Media Utilization; Twitter; Videorecording; World Wide Web
Background: Accessible information about palliative care available to the public on the Internet is growing. We do not know whether this information is consistent with the current accepted definition of palliative care. Aim: To identify resources on the Internet and social media regarding palliative care and evaluate the information conveyed. Design: A cross-sectional study of “palliative care” search results. Setting: Top 10 Google websites, top 10 most viewed YouTube videos, and social media platforms, Facebook and Twitter, were searched. Results: The most popular Google websites were mostly from national organizations promoting palliative care, whose definitions of palliative care consistently mention “quality of life” and “relief from symptoms and stress.” None of the websites mentioned children, and 77% cited palliative care as treatment for cancer with less focus on other diseases. No personal stories were included in Google websites, while 60% of YouTube videos included personal stories. Five main themes were generated from 266 YouTube video comments analyzed. The most common theme was emotionality, of which 91% were positive statements. Facebook and Twitter were mostly used by health-care professionals and not the public. Conclusions: Palliative care resources are mostly positive and consistent with the current definition of palliative care. Major Internet search engines such as Google and YouTube provide valuable insight into information the public receives about palliative care. Future development of Internet resources on palliative care should consider including children and emphasizing palliative care for all life-limiting illnesses.
Claudio CH; Dizon ZB; October TW
American Journal of Hospice & Palliative Medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1177/1049909118763800" target="_blank" rel="noreferrer noopener">10.1177/1049909118763800</a>
Making Meaning After the Death of a Child
bereavement; death; medical education; palliative therapy; storytelling; voice; article; child; controlled study; empathy; female; human; mother; narrative; skill; student; videorecording
Two bereaved mothers recount how they made meaning after the deaths of their children, recounting how opportunities to tell their stories in medical settings enabled them to construct narratives that promoted resilience and a sense of control. Pediatric palliative care can be conceived as opening space for patients and guardians to tell their stories outside of the specifics of illness, so medical teams can work to accommodate families' values and goals, thereby initiating the process of meaning making. Viewing videos of parent stories enables medical trainees to enhance their communications skills, empathy, and compassion.Copyright © 2018 Elsevier Inc.
Clancy S; Lord B
Child and Adolescent Psychiatric Clinics of North America
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.chc.2018.05.011" target="_blank" rel="noreferrer noopener">10.1016/j.chc.2018.05.011</a>
Social Media Consequences of Pediatric Death
bereavement; death; grief; knee prosthesis; pediatrics; social media; adolescent; article; caregiver; child; human; videorecording
Social media is an important access point for engagement of children and adolescents. For individuals with a life-limiting illness or serving as the caregiver for an ill child, social media can be a helpful outlet for support and information gathering. It has democratized the process of being remembered through providing an ongoing account of thoughts, pictures, and videos that theoretically live on forever via a digital legacy. Providers should be familiar with how this new generation uses social media during their illness, after death, and in the bereavement process.Copyright © 2018 Elsevier Inc.
Buxton DC; Vest TR
Child and Adolescent Psychiatric Clinics of North America
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.chc.2018.05.008" target="_blank" rel="noreferrer noopener">10.1016/j.chc.2018.05.008</a>