People with an intellectual disability and their families experience poorer health care compared with the general population. Living with an intellectual disability is often challenged by coexisting complex and chronic conditions, such as gastrointestinal and respiratory conditions. A literature review was undertaken to document the needs of this vulnerable population, and consultation was undertaken with mothers of children with disabilities and with professionals working within disability services for people with an intellectual disability and their families. Based on this review, there is a need to increase the profile of people with an intellectual disability in the discourse surrounding chronic and complex conditions. Strategies such as guideline and competency development may better prepare health professions to care for people with disabilities and chronic and complex care needs and their families.

Download full-text PDF

Source
http://dx.doi.org/10.1071/ah080405DOI Listing

Publication Analysis

Top Keywords

intellectual disability
20
people intellectual
16
chronic complex
12
disability discourse
8
complex conditions
8
disability families
8
disability
6
people
5
chronic
4
discourse chronic
4

Similar Publications

Cell fate decisions during cortical development sculpt the identity of long-range connections that subserve complex behaviors. These decisions are largely dictated by mutually exclusive transcription factors, including CTIP2/Bcl11b for subcerebral projection neurons and BRN1/Pou3f3 for intra-telencephalic projection neurons. We have recently reported that the balance of cortical CTIP2-expressing neurons is altered in a mouse model of DDX3X syndrome, a female-biased neurodevelopmental disorder associated with intellectual disability, autism spectrum disorder, and significant motor challenges.

View Article and Find Full Text PDF

Myoclonic reflex and non-reflex seizures in a female child with Coffin-Lowry syndrome: Clinical vignette.

Epileptic Disord

January 2025

Child Neurology and Psychiatry Unit, Dipartimento materno-infantile, Presidio Ospedaliero Santa Maria Nuova, AUSL-IRCCS di Reggio Emilia, Reggio Emilia, Italy.

View Article and Find Full Text PDF

SYNGAP1 is a Ras GTPase-activating protein that plays a crucial role during brain development and in synaptic plasticity. Sporadic heterozygous mutations in SYNGAP1 affect social and emotional behaviour observed in intellectual disability (ID) and autism spectrum disorder (ASD). Although neurophysiological deficits have been extensively studied, the epigenetic landscape of SYNGAP1 mutation-mediated intellectual disability is unexplored.

View Article and Find Full Text PDF

This article identifies and offers a response to several problems that affect the quality of both clinical education and health care services. These matters are: that in clinical training and practice, health, as lived by patients (persons), is not properly considered, and is equated reductively with treating diseases/disorders; that health is seen through disease, and as restricted to a single model defined by an organism's meeting (or being returned to) biochemical or functional standards; that intellectual assumptions instilled in schools of Medicine and Psychology about realities pertaining to healthcare determine an understanding of chronic illness or life with chronic challenges focused on impairment and suffering, and not on the fuller experience of living with illness, disability or neuropsychological challenges that patients have as persons; that arts-based education reflects the same focus in understanding 'illness', and thus neglects giving attention to the creation of personal health states of those living with challenging or debilitating long-term conditions; that, consequently, the arts are instrumentalized to serve these predefined educational purposes, rather than allowed to inform clinical training through that which is intrinsic or more specific to them. As a way out of these limitations and as an illustration of how things could be done differently, Vincent Van Gogh's paintings of the Sunflowers are used as visual inspiration for how we could change the way we see, and construct new mental representations of 'health', 'chronic illness' or 'chronic challenges', 'patient as person' or even 'person as non-patient', 'the clinician's role' and 'the identity of clinical practice'.

View Article and Find Full Text PDF

Introduction: Antisense oligonucleotides (ASOs) have shown promise in reducing amyloid precursor protein (APP) levels in neurons, but their effects in astrocytes, key contributors to neurodegenerative diseases, remain unclear. This study evaluates the efficacy of APP ASOs in astrocytes derived from an individual with Down syndrome (DS), a population at high risk for Alzheimer's disease (AD).

Methods: Human induced pluripotent stem cells (hiPSCs) from a healthy individual and an individual with DS were differentiated into astrocytes.

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!