End-of-Life and Dying In Persons with Disabilities: A Mapping Study

Result code in IS VaVaI

<a href="https://www.isvavai.cz/riv?ss=detail&h=RIV%2F61989592%3A15410%2F19%3A73596099" target="_blank" >RIV/61989592:15410/19:73596099 - isvavai.cz</a>

Result on the web

<a href="https://obd.upol.cz/id_publ/333175985" target="_blank" >https://obd.upol.cz/id_publ/333175985</a>

DOI - Digital Object Identifier

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Result language

angličtina

Original language name

End-of-Life and Dying In Persons with Disabilities: A Mapping Study

Original language description

End-of-life and dying is a topic addressed by several scientific and study disciplines. A very frequent context is palliative and hospice care and/or high age or health condition/complications that indicate approaching death. Sporadic attention is paid to end- of-life and dying in the context of persons with health disability (HD). The objective of the paper was to perform a study aimed at an analysis of available and criteria-compliant studies and their findings on the aspect of the end-of-life period, dying and death of persons with HD, and to present the content components of this specific time period in dying persons with HD. The method selected by the authors was the design mapping study. The authors searched for studies (documents) in the full-text form published in English between 2000 and 2019 by means of Discovery Service and through bibliographical and citation databases ISI Web of Knowledge and SCOPUS (Interdisciplinary). The secondary sample for data analysis comprised 33 studies. The main content components included the following: (1) Involvement of persons in the end-of-life period in research (persons with intellectual disability, fragile seniors, persons with severe cognitive deficits including dementia, and others); (2) Applied research method and methodology; (3) Assessment: knowledge and attitudes in the context of end-of-life, (ethical) decision making, care planning, collaboration between care providers, quality of life, conditions of dying, and others; (4) Perception: concept of death, fear of death, experience with death and grief, and others; (5) Application or development of research instruments; (6) Support of persons in end-of-life – social and health support, non-institutional forms of support, medical care and services, formal and informal care, and others; (7) Age category of persons with HD – adult clients, older and old clients, occasionally child clients or young adults; (8) Identification and assessment of emotional state; (9) Caring persons; (10) Specific (health) problem – swallowing disorders in elderly persons, dementia, nutritional indicators as a predictor of death in elderly persons with cognitive impairment, age heterogeneity in the context of death of persons with developmental disability; (11) Applied perspective – clients, staff, parents, legal guardians, husband/wife. The recommendations concerning further analysis of the issue include the identification, analysis and interpretation of the educational needs of the actors involved (in the context of accompanying, dying, and grief/bereavement facilitation), as well as analyses of theories relating to bereavement counselling (in the Czech Republic this area does not consider the specifics of persons with HD). It would also be desirable to perform an analysis of instruments used to assess the quality of life in dying persons with HD and their carers, as well as an analysis of the barriers that affect the process of interpersonal relationships and/or the process of bereavement in persons with HD.

Czech name

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Czech description

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Type

D - Article in proceedings

CEP classification

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OECD FORD branch

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

Project

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Continuities

I - Institucionalni podpora na dlouhodoby koncepcni rozvoj vyzkumne organizace

Publication year

2019

Confidentiality

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

Article name in the collection

Proceedings of IAC in Vienna 2019

ISBN

978-80-88203-14-8

ISSN

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e-ISSN

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Number of pages

7

Pages from-to

85-91

Publisher name

Czech Institute of Academic Education, z.s.

Place of publication

Praha

Event location

Vienna

Event date

Nov 29, 2019

Type of event by nationality

WRD - Celosvětová akce

UT code for WoS article

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