End of Life Care to Clients with Intellectual Disability

Running head: End of life care to clients with intellectual disability
End of life care to clients with intellectual disability
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End of life care to clients with intellectual disability
Introduction
Palliative care programs have been established over the years to assist all people with
life-limiting conditions (Bailey, Doody and Lyons 2016). Individuals with intellectual disabilities
(ID) have traditionally been exempt from awareness of death, bereavement and dying (Lord,
Field and Smith 2017). Evidence has demonstrated that registered nurses (RNs) appear unable to
give assistance to patients with intellectual disability. All nurses should be strongly concerned
with improving the safety of people with intellectual disability. Disabled people have the same
privilege as everyone else to the best acceptable safety standard. Despite this, no discussion
appears to be taking place about their actual welfare needs. Furthermore, the international
nursing literature under-examines the way that Registered Persons (RNs) should be qualified to
serve this patient community and their function in meeting their health needs (Appelgren et al.
2018). Intellectual disability workers may play a significant part in improving their awareness of
these problems. The wide range of palliative care programs is globally targeted at delivering
palliative treatment according to established necessity which has culminated in a rise in the
amount of people seeking palliative care facilities. In addition, increasing demographic patterns,
including ageing populations, growing life expectancy of people who are suffering from life-
limiting illnesses and the effect of illness on the well-being of individuals, would imply a greater
need for better palliative care (Lord, Field and Smith 2017). This paper will thus conduct a
literature review focusing on the nurses’ experiences of delivering end of life care to clients with
intellectual disability.

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End of life care to clients with intellectual disability
Search strategy
In order to conduct this literature review, several online databases like PubMed, CINAHL
and Google Scholar were searched with basic keywords like “End of life care”, “Palliative care”,
“Nurses’ experiences of palliative care”, “Intellectual disability and end-of-life”, “How people
with intellectual disability perceives death and dying”, “nurse end of life care for disable people”
and a combination of these. A total of 24 articles from all these databases were found to be
relevant and thus screened by skimming through the abstract that gave precise information about
the article. Articles lacking a proper abstract have been excluded from the study. The time frame
selected for searching the studies were in and after 2014 in order to get the recent findings on this
area. The articles selected were based on strong evidences and had conclusive research findings
and therefore, a total of 5 articles were selected for the study since they were matching the
inclusion criteria.
Discussion
Article 1
This is a quantitative descriptive cross-sectional survey conducted by Bailey, Doody and
Lyons (2016) with the aim to describe the delivery of Community nursing facilities for persons
with intellectual disabilities and palliative / end-of-life treatment requirements in one HSE area
of Ireland. An exploratory analytical survey utilizing a cross-section self-report questionnaire
was chosen for ease of use by respondents with the additional benefit of encoding and usage of
data research kits. validity and Reliability of the instruments were discussed by piloting the
questionnaire (n=10) to assess if the questions were straightforward and distinctive, and an
professional panel (statistician, quantitative analyst, two Palliative Care Clinical Nurse Experts

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End of life care to clients with intellectual disability
and a senior researcher) checked the instrument's face functionality and guaranteed usability.
Depending on input from the advisory team, small changes have been made to the language of
the specific queries. The survey comprised of a total population of Public Health Nurses (PHN),
Hospital Nurses, Clinical Nurses, Home Nurses Hospice and Palliative Care Nurses currently
working in the HSE region of Ireland. Connection to all staff was given by the respective
Directors of Healthcare/Public Health Nurse. A study kit containing an official letter, an
background folder, a questionnaire and a sealed, addressed envelope was circulated to the sample
community (N = 290). A response rate of 32% (n = 94) was achieved. Participants were asked to
return the questionnaire in 4 weeks, and an electronic alert was submitted to community nursing
after 2 weeks. Data was evaluated using version 18 of the SPSS. In the descriptional analysis the
frequencies were represented and trends of respondents recorded as statistical summaries were
established. Qualitative data is evaluated using the Burnard (2011) thematic analysis framework.
Of the participants (n=94), one (1.0 %) kept an RNID ranking, 80.9 percent (n=76) had taken
further education in the specific or advanced sector of the RNID category. 77.6 per cent (n = 73)
had a degree or higher education credential. Just 85 people with mental disability were assigned
over a three-year period to palliative / end-of-life treatment. Many who provided treatment
shared challenges, such as recognizing behavioral patterns, late reports, time constraints,
expertise and abilities. The advantages of liaison between families and technical and non-
professional interconnections were illustrated in the report. Findings offer insights into the value
of coordination, advanced preparation, understanding of the individual and good experience in
palliative / end-of-life treatment through collaboration among individuals with intellectual
disabilities.
Key findings of the study