Implementation challenges in end-of-life research with adults with intellectual and developmental disabilities.
Appl Nurs Res
; 28(2): 202-5, 2015 May.
Article
em En
| MEDLINE
| ID: mdl-25457272
ABSTRACT
Although the 4 million+people in the U.S. with an intellectual or developmental disability (I/DD) experience the same life expectancy as those in the general population, end-of-life research including these individuals is lacking and can be difficult to implement. As will be described in this paper, it is possible to overcome barriers to successfully include people with I/DD in end-of-life research. In this paper, the implementation challenges, feasibility, and implications for successful end-of-life research with individuals with I/DD using focus groups are described. Individuals with I/DD were able to discuss their experiences and views about end-of-life care. However, while people with I/DD made valuable contributions to the focus groups, there were several modifications needed in order to execute this study. In order to gain a complete picture of end-of-life care for people with I/DD, it is imperative to include them in research to the best of their ability. By anticipating issues related to recruitment, the consent process, setting, and support needs of participants, focus groups can be successfully implemented.
Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Assistência Terminal
/
Deficiências do Desenvolvimento
/
Pesquisa Biomédica
Tipo de estudo:
Qualitative_research
Limite:
Adult
/
Humans
Idioma:
En
Ano de publicação:
2015
Tipo de documento:
Article