SWS Academic Research eLibrarySocial Sciences & Art

Scholarly record

ACCOMPANYING OF DYING PERSONS WITH INTELLECTUAL DISABILITIES IN RESIDENTIAL CARE – SPECIFICITY, THEMES, APPLICATION

Tereza Klvanova, J. Chrastina, N. Spatenkova, B. Hudcova, L. Ludikova

First published: 2018https://doi.org/10.5593/sgemsocial2018/3.2/S11.002View metrics

Abstract

Regarding the phenomenon of the currently extending life expectancy of the population, it can be assumed that the number of ageing persons with intellectual (and other) disability will increase. These persons, having survived their parents, need to rely on institutional support, which is frequently of a residential nature. The process of ageing of persons with intellectual disability is also associated with frequent occurrence of long-term diseases and changes in their health status. Regarding the above, it can be assumed that the number of dying persons with intellectual disability in residential establishments will increase. These persons have specific needs which need to be accepted and considered in accompanying these persons in the process of dying (in the prae finem stage and especially the finem stage). Attention should also be paid to persons with intellectual disability who found themselves in the role of survivors. The objective of the paper is through an analysis of relevant literature to conceptualize the process of accompanying (with an emphasis on the above mentioned aspects), define the issues in question, and outline possible practical applications. The paper is a review study and the authors use the method of an interpretative content analysis of current studies (articles) published primarily in the period of the past 5–10 years using a detailed procedure of review study processing (keywords, inclusion/exclusion criteria, content compliance, working with findings). The paper will help fill the gap of insufficient knowledge about the issue and will provide definitions concerning the process of accompanying of dying persons and survivors with intellectual disability in the conditions of residential services (specifics, themes, applications).

Publication Impact Profile

Publication details

Title
ACCOMPANYING OF DYING PERSONS WITH INTELLECTUAL DISABILITIES IN RESIDENTIAL CARE – SPECIFICITY, THEMES, APPLICATION
Authors
Tereza Klvanova, J. Chrastina, N. Spatenkova, B. Hudcova, L. Ludikova
Proceedings
5th International Multidisciplinary Scientific Conference on Social Sciences and Arts SGEM 2018
Publisher
STEF92 Technology
Year
2018
Pages
11-18
SWS Citekey
Klvanova2018111118
ISSN
2367-5659
ISBN
978-619-7408-54-6
Language
en
Publication type
Proceedings Paper
Proceedings contents
Open official contents
Keywords
References14
  1. Braddock D., Emerson E., Felce D., Stancliffe R. J., Living circumstances of children and adults with mental retardation or developmental disabilities in the United States, Canada, England and Wales and Australia, Mental Retardation and Developmental Disabilities Research Reviews, vol. 7/issue 2, pp. 115–121, 2001.

  2. Todd S., The experiences of staff in dealing with matters of dying and death in services for people with intellectual disabilities, Journal of Applied Research in Intellectual Disabilities, vol. 26/issue 3, pp. 215–230, 2013.

  3. Stancliffe R. J., Jones E., Mansell J., Lowe K., Active support: a critical review and commentary, Intellectual & Developmental Disability, vol. 33/issue 3, pp. 196–214, 2008.

  4. Wiese M., Roger J., Balandin S., Howarth G., Dew A., End-of-life care and dying: issues raised by staff supporting older people with intellectual disability in community living services, Journal of Applied Research in Intellectual Disabilities, vol. 25/issue 6, pp. 571–583, 2012.

  5. Bekkema N., Veer A. J. E., Hertogh C. M. P. M., Francke A. L., From activating towards caring: shifts in care approaches at the end of life of people with intellectual disabilities; a qualitative study of the perspectives of relatives, care-staff and physicians, BMC Palliative Care, vol. 14/issue 1, pp. 1–10, 2015.

  6. Ryan K., Guerin S., Dodd P., McEvoy J., Communication contexts about illness, death and dying for people with intellectual disabilities and life-limiting illness, Palliative and Supportive Care, vol. 9/issue 2, pp. 201–208, 2011.

  7. Bekkema N., Veer A. J. E., Hertogh C. M. P. M., Francke A. L., Respecting autonomy in the end-of-life care of people with intellectual disabilities: a qualitative multiple-case study, Journal of Intellectual Disability Research, vol. 58/issue 4, pp. 368–380, 2014.

  8. McLaughlin D., Barr O., McIlfatrick S., McConkey R., Developing a best practice model for partnership practice between specialist palliative care and intellectual disability services: a mixed methods study, Palliative Medicine, vol. 28/issue 10, pp. 1213–1221, 2014.

  9. Tuffrey-Wijne I., Rose T., Grant R., Wijne A., Communicating about death and dying: developing training for staff working in services for people with intellectual disabilities, Journal of Applied Research in Intellectual Disabilities, vol. 30/issue 6, pp. 1099–1110, 2017.

  10. McKenzie N., Mirfin-Veitch B., Conder J., Brandford S., „I´m still here“: exploring what matters to people with intellectual disability during advance care planning, Journal of Applied Research in Intellectual Disabilities, vol. 30/issue 6, pp. 1089–1098, 2017.

  11. Watchmen K., Practitioner-raised issues and end-of-life care for adults with Down syndrome and dementia, Journal of Policy and Practice in Intellectual Disabilities, vol. 2/issue 2, pp. 156–162, 2005.

  12. Wiese M., Stancliffe J., Dew A., Balandin S., Howarth G., What is talked about? Community living staff experiences of talking with older people with intellectual disability about dying and death, Journal of Intellectual Disability Research, vol. 58/issue 7, pp. 679–690, 2014.

  13. McRitchie R., McKenzie K., Qualye E., Harlin M., Neumann K., How adults with an intellectual disability experience bereavement and grief: a qualitative exploration, Death Studies, vol. 38/issue 3, pp. 179–185, 2014.

  14. Mappin R., Hamlon D., Description and evaluation of a bereavement group for people with learning disabilities, British Journal of Learning Disabilities, vol. 33/issue 3, pp. 106–112, 2005.

View or Download full articleAccess options
Full paper accessChoose SWS login, librarian support, or instant article download.

SWS access login

Login as SWS Scientific Committee

Authors and approved SWS contributors will read and export their own linked papers after identity matching by SWS profile, email and SGEM GlobalID.

For librarian assistance: [email protected]

Purchase Instant Access

48-hour online accessComing soon
Online-only accessComing soon
Download the full article in PDF formatEUR 35
  • Article can be downloaded after successful payment.
  • Article may be used according to SWS library access terms.
  • Article cannot be redistributed.
Get full paper

Back to publication list

Connected events

SGEM WORLD SCIENCE Conferences

The SSA Library connects published research with the scientific events where it was presented, reviewed and prepared for long-term scholarly discovery.

SWS Social Sciences and Arts conference
SWS Social Sciences & Arts

Social Sciences and Arts & Humanities

The joint SGEM WORLD SCIENCE forum for Social Sciences and Arts & Humanities, bringing together research in society, culture, education, law, economics, humanities and the arts.

Visit sgemsocial.org
SWS Vienna When Science Meets Art
SWS Vienna - When Science Meets Art

Social Sciences, Science Meets Art

The Vienna platform for Social Sciences, interdisciplinary research and the dialogue between science, art, society and culture.

Visit sgemvienna.org
SWS Italy The Renaissance Reimagined
SWS Italy - The Renaissance Reimagined

Arts and Humanities, Renaissance Studies

The SGEM WORLD SCIENCE forum for Arts and Humanities in Italy, Florence and Bologna, focused on culture, history, heritage, literature, philosophy, art and humanistic research.

Visit sgemitaly.org

International Indexing & Global Visibility of Our Scientific Publications

SWS scientific publications gain international visibility through a broad network of scholarly indexing and abstracting databases, citation-tracking services, research discovery platforms, and academic repositories.

Depending on the platform, our publications may be accessible as indexed bibliographic records, abstracts, citation data, DOI-linked metadata, or full-text scientific papers. Coverage and availability vary across platforms and publication years.