Palliative Medicine: Scoping the level and extent of service provision to people with intellectual disability at end of life Poster Presentation

Doris McLaughlin, Owen Barr, Sonja McIlfatrick, Roy McConkey

Research output: Contribution to conferenceAbstractpeer-review

Abstract

Background: Concerns exist about the end of life care
that people with intellectual disabilities receive. This population
are seldom referred to palliative care services and
inadequate data sets exist about their place of death.
Aim: To scope the extent of service provision to people
with intellectual disabilities at the end of life by specialist
palliative care and intellectual disability services in one
region of the United Kingdom.
Methods: As part of a larger doctoral study a regional survey
took place of a total sample (n=66) of specialist palliative
care and intellectual disability services using a postal
questionnaire containing forty items. The questionnaire
was informed by the literature and consultation with an
expert reference group. Data were analysed using SPSS to
obtain descriptive statistics.
Results: A total response rate from services of 71.2%
(n=47) was generated. Findings showed a range of experience
among services in providing end of life care to people
with intellectual disabilities in the previous five years, but
general hospitals were reported the most common place of
death. A lack of accessible information on end of life care
for people with learning disabilities was apparent. A few
services (n=14) had a policy to support this population to
make decisions about their care or had used adapted Breaking
Bad News guidelines (n=5) to meet their additional
needs. Both services recognised the value of partnership
working in assessing and meeting the holistic needs of
people with intellectual disabilities at end of life.
Conclusions: A range of experience in caring for people
with intellectual disabilities was present across services,
but more emphasis is required on adapting communication
for this population to facilitate them to participate in their
care. These findings could have international significance
given that studies in other countries have highlighted a
need to widen access to palliative care for this group of
people.
Original languageEnglish
DOIs
Publication statusPublished - 2016
Event9th World Research Congress of the European Association for Palliative Care (EAPC) - University College Dublin, Dublin, Ireland
Duration: 09 Jun 201611 Jun 2016
Conference number: 9

Conference

Conference9th World Research Congress of the European Association for Palliative Care (EAPC)
CountryIreland
CityDublin
Period09/06/201611/06/2016

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