End-of-Life and Palliative Approach, Educational and Specific Needs in Persons with Duchenne Muscular Dystrophy

Result code in IS VaVaI

<a href="https://www.isvavai.cz/riv?ss=detail&h=RIV%2F61989592%3A15410%2F23%3A73617472" target="_blank" >RIV/61989592:15410/23:73617472 - isvavai.cz</a>

Result on the web

—

DOI - Digital Object Identifier

—

Result language

angličtina

Original language name

End-of-Life and Palliative Approach, Educational and Specific Needs in Persons with Duchenne Muscular Dystrophy

Original language description

In the last two decades, the overall improvement of treatment has prolonged the life of patients with Duchenne muscular dystrophy (DMD). This has led to new challenges, opportunities and needs on both sides – patients and carers (parents, families, close persons) on the one hand and professionals who provide care and support on the other. These professionals surely include teaching staff, specifically teachers. However, there is a lack of relevant research studies on educational, specific and palliative needs in the context of the end of life of persons with DMD. The paper aimed to describe the current state of knowledge concerning the end of life, palliative approach and care in the context of the needs of dying children and clients through an initial literary review (a part of an extensive research study of the authors). The results suggest a variety of topics. The most significant include the following: (a) Discussion on dying and death and its appropriate timing; (b) Psychosocial support for children and adolescent patients, including their integration into the natural peer and school community; (c) Comprehensive support for family carers and close persons; focus on life and quality of life and on anticipated (or impending) death; (d) Education on the meaning of the term “palliative care” and the possibilities/offer of palliative and hospice care; (e) Initiation of a supportive interview and preparation of a plan of care, needs and expectations. It turns out that discussing the end of life is just as important as discussing life itself – it is recommended to focus on the quality of life and, at the right time, think about the end of life in a way that (child) patients perceive as beneficial.

Czech name

—

Czech description

—

Type

D - Article in proceedings

CEP classification

—

OECD FORD branch

50302 - Education, special (to gifted persons, those with learning disabilities)

Project

—

Continuities

S - Specificky vyzkum na vysokych skolach

Publication year

2023

Confidentiality

S - Úplné a pravdivé údaje o projektu nepodléhají ochraně podle zvláštních právních předpisů

Article name in the collection

Proceedings of VIAC 2023

ISBN

978-80-88203-31-5

ISSN

—

e-ISSN

—

Number of pages

6

Pages from-to

14-19

Publisher name

Czech Institute of Academic Education z.s.

Place of publication

Praha

Event location

Virtual

Event date

Feb 17, 2023

Type of event by nationality

WRD - Celosvětová akce

UT code for WoS article

—