Aim: To explore healthcare workers' experiences of end of life care for people with an intellectual disability.

Design: A descriptive qualitative study.

Method: Semi-structured interviews were conducted with 28 healthcare workers who cared for older people with an intellectual disability at their end of life. Data were analysed using thematic analysis and reported according to the COREQ guidelines.

Results: Three major themes emerged: not joining up the dots, living the life desired in one's last days and dealing with death and beyond.

Conclusion: Gaps emerged in the care of the person with intellectual disability. Pain assessment and pain management were particular challenges. End of life care was not always effectively planned, and earlier intervention, including end of life conversations, were needed. More needs to be done in terms of education for healthcare workers, and especially those in the acute care setting and palliative care services who may be unfamiliar with the needs of this cohort.

Implications For The Profession And/or Patient Care: There is little consensus or understanding about the palliative care needs of those with intellectual disability. There are often specific challenges around providing palliative care particularly in relation to healthcare staffs' knowledge and confidence in understanding palliative care needs of this group and indeed communicating and assessing particular needs. Staff require educational preparation and training in palliative care to address the particular needs of this cohort.

Impact: This study revealed that there are gaps emerging in the care of the person with intellectual disability at the end of life. Pain assessment and pain management are particular challenges that require urgent attention.

Patient Or Public Contribution: There was no patient or publication contribution in this specific study, although IDS-TILDA has a client representative and advisory committee that advise on all aspects of project design and management.

Download full-text PDF

Source
http://dx.doi.org/10.1111/jan.16556DOI Listing

Publication Analysis

Top Keywords

intellectual disability
20
palliative care
20
care
12
life care
12
people intellectual
12
healthcare workers'
8
workers' experiences
8
experiences life
8
care people
8
healthcare workers
8

Similar Publications

Introduction: The clinical, research and advocacy communities for Rett syndrome are striving to achieve clinical trial readiness, including having fit-for-purpose clinical outcome assessments. This study aimed to (1) describe psychometric properties of clinical outcome assessment for Rett syndrome and (2) identify what is needed to ensure that fit-for-purpose clinical outcome assessments are available for clinical trials.

Methods: Clinical outcome assessments for the top 10 priority domains identified in the Voice of the Patient Report for Rett syndrome were compiled and available psychometric data were extracted.

View Article and Find Full Text PDF

The Chromodomain Helicase DNA-binding (CHD) protein family is ATP-dependent chromatin remodeling proteins that utilize energy produced by ATP hydrolysis to regulate chromatin structure and thereby modulate gene expression. The earliest report of a CHD3 gene mutation was by O'Roak, who found it during whole exome sequencing of 189 autism families in 2012. In 2018, Snijders Blok systematically assessed the autosomal dominant neurodevelopmental disorder caused by CHD3 gene damage, known as Snijders Blok-Campeau syndrome (SNIBCPS, OMIM 618205).

View Article and Find Full Text PDF

NONO-related X-linked intellectual disability syndrome: further clinical and molecular delineation.

Eur J Med Genet

December 2024

CHU Lille, Institut de Génétique Médicale, F-59000 Lille, France; Univ. Lille, ULR7364 - RADEME - Maladies RAres du DEveloppement embryonnaire et du Métabolisme, F-59000 Lille, France. Electronic address:

The X-linked NONO gene encodes Non-Pou Domain-Containing Octamer-Binding Protein, a multifunctional member of the DBHS family involved in transcriptional regulation, RNA splicing and DNA repair. Pathogenic variants in NONO cause Intellectual Developmental Disorder, X-linked Syndromic (MIM #300967), characterised by intellectual disability, neurodevelopmental delay, cardiomyopathy, such as left ventricular non-compaction (LVNC), and congenital heart defects such as including atrial septal defect (ASD), ventricular septal defect (VSD), patent ductus arteriosus (PDA), and patent foramen ovale (PFO). This study reports three new patients with pathogenic hemizygous frameshift variants in NONO identified with exome sequencing, broadening the clinical presentation.

View Article and Find Full Text PDF

O'Donnell-Luria-Rodan (ODLURO) syndrome is an autosomal dominant neurodevelopmental disorder mainly characterized by global development delay/intellectual disability, white matter abnormalities, and behavioral manifestations. It is caused by pathogenic variants in the KMT2E gene. Here we report seven new patients with loss-of-function KMT2E variants, six harboring frameshift/nonsense changes, and one with a 7q22.

View Article and Find Full Text PDF

Electrical status epilepticus in sleep (ESES) is an electrographic pattern associated with cognitive impairment. Our study aimed to prospectively evaluate the psychiatric findings and language skills in patients diagnosed with ESES and to determine the immune modulatory treatment-responsive subgroups. We assessed the patients for psychiatric features and language skills at the baseline and 12 months after.

View Article and Find Full Text PDF

Want AI Summaries of new PubMed Abstracts delivered to your In-box?

Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!