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

Kód výsledku v 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>

Výsledek na webu

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DOI - Digital Object Identifier

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Jazyk výsledku

angličtina

Název v původním jazyce

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

Popis výsledku v původním jazyce

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.

Název v anglickém jazyce

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

Popis výsledku anglicky

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.

Druh

D - Stať ve sborníku

CEP obor

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OECD FORD obor

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

Projekt

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Návaznosti

S - Specificky vyzkum na vysokych skolach

Rok uplatnění

2023

Kód důvěrnosti údajů

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

Název statě ve sborníku

Proceedings of VIAC 2023

ISBN

978-80-88203-31-5

ISSN

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e-ISSN

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Počet stran výsledku

6

Strana od-do

14-19

Název nakladatele

Czech Institute of Academic Education z.s.

Místo vydání

Praha

Místo konání akce

Virtual

Datum konání akce

17. 2. 2023

Typ akce podle státní příslušnosti

WRD - Celosvětová akce

Kód UT WoS článku

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