Background: The purpose of this article is to describe an interventional project in a University Hospital. It explains the adjustments that were made to provide good care for patients with intellectual and developmental disabilities in an acute care setting in Western Switzerland. It is not the exposition of the results of a formalised research or study. Rather, this article relates the success story of a project initiated by a small group of passionate people on their free time, that eventually entered in the 2020 strategic planning of the largest hospital of Switzerland. Switzerland does not have a national policy regarding health needs for patients with intellectual and developmental disabilities. Health care professionals are not trained to identify and meet the specific health needs of this population and little is taught about intellectual and developmental disabilities during undergraduate studies.

Method: The Disability Project was conducted between 2012 and 2017 in Geneva University Hospital, as follows: Firstly, over sixty working group sessions took place to identify the specific health needs of people with intellectual and developmental disabilities, to identify the barriers to providing equity of care and to prioritize reasonable adjustments. The four following barriers emerged from these meetings: 1. Lack of awareness of healthcare professionals on specific health issues for patients with intellectual and developmental disabilities, which resulted in a poor healthcare coordination and reduced quality of care. 2. Communication and information transmission issues between hospital staff, families and supported residential accommodations. 3. Lack of training or insufficient training of healthcare professionals and hospital staff on intellectual and developmental disabilities. 4. Inaccessibility of the hospital facilities and buildings for patients with disabilities Secondly, arising from these priorities, interventions were developed.

Findings: The interventions were eventually applied throughout the hospital. Recommendations and reasonable adjustments were made to provide accessibility and equity of care for patients with intellectual and developmental disabilities.

Conclusion: The Disability Project has achieved many reasonable adjustments in an acute care setting to provide good care and satisfaction for this population and their families.

Download full-text PDF

Source
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6423855PMC
http://dx.doi.org/10.1186/s12939-019-0948-8DOI Listing

Publication Analysis

Top Keywords

intellectual developmental
32
developmental disabilities
28
patients intellectual
20
equity care
12
care patients
12
university hospital
12
specific health
12
reasonable adjustments
12
care
9
providing equity
8

Similar Publications

Objectives: Developmental and epileptic encephalopathies (DEEs) caused by pathogenic variants in SCN8A are associated with difficult-to-treat and early-onset seizures, developmental delay/intellectual disability, impaired quality of life, and increased risk of early mortality. High doses of sodium channel blockers are typically used to treat SCN8A-DEE caused by gain-of-function (GoF) variants. However, seizures are often drug resistant, and only a few patients achieve seizure freedom.

View Article and Find Full Text PDF

Myhre syndrome is a rare disorder caused by pathogenic gain-of-function variants in the SMAD4 gene. Most of the patients have had de novo variants. There are several instances of autosomal dominant inheritance, and penetrance appears to be complete.

View Article and Find Full Text PDF

Although chromatin remodelers are among the most important risk genes associated with neurodevelopmental disorders (NDDs), the roles of these complexes during brain development are in many cases unclear. Here, we focused on the recently discovered ChAHP chromatin remodeling complex. The zinc finger and homeodomain transcription factor ADNP is a core subunit of this complex, and de novo mutations lead to intellectual disability and autism spectrum disorder.

View Article and Find Full Text PDF

Introduction: Alzheimer's disease (AD) in Down syndrome (DS) is associated with changes in brain structure. It is unknown if thickness and volumetric changes can identify AD stages and if they are similar to other genetic forms of AD.

Methods: Magnetic resonance imaging scans were collected for 178 DS adults (106 nonclinical, 45 preclinical, and 27 symptomatic).

View Article and Find Full Text PDF

-related disorder (SRD) is a developmental and epileptic encephalopathy caused by a disruption of the gene. At the beginning of 2024, it is one of many rare monogenic brain disorders without disease-modifying treatments, but that is changing. This article chronicles the last 5 years, beginning when treatments for SRD were not publicly in development, to the start of 2024 when many SRD-specific treatments are advancing.

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!