END-OF-LIFE AND DYING OF PEOPLE WITH DISABILITIES – CONCEPTUALIZATION, TOPICS, SPECIFICS

ABSTRACT

Accompanying people with disabilities (PwD) throughout the end-of-life and dying is an important topic in many scientific and study fields. On the basis of a literary research it can be stated that this topic is being relatively neglected in published studies covering rather recurrent themes. PwD have specific needs, require specific access and means of communication, etc. The found published studies have focused on the end-of-life period predominantly in people with mental retardation and cognitive disabilities from childhood to old age. End-of-life accompanied by a number of symptoms calls for a specialized approach as well as high-quality care provided by the staff (and caregivers). Therefore, defining adequately the end-of-life specifics of PwD is necessary.
The aim of the paper is to describe the end-of-life and dying of PwD, to define the topics in this area and to describe the needs of this highly specific target group of people (clients) living either in a home or an institutional environment. Since qualitative studies provide valuable research findings, a review of already published meta-syntheses of end-of-life in dying PwD will also be a part of the paper. The paper of a review character used an interpretative content analysis method, studying of the scientific knowledge (available in databases) and a comparison process with an emphasis on partial preparation phases of a review study. The paper could be used as the fulfillment the gap in the research area for the above-mentioned topic of research and application activities.

Keywords: end-of-life, persons with disability, dying, preparedness and readiness, special needs