Where All Bodies Are Exquisite

Source: The New York Times

“Circle Story #10,” a 2003 painting of poet and essayist Eli Clare. Credit Riva Lehrer

It’s 2009, and I’m in Philadelphia to deliver a talk at a conference. During a long break, I decide to visit the Mutter Museum. I teach anatomy, and the Mutter houses a collection of so-called medical curiosities. I examine the wall of skulls, the cases full of skeletons, and go downstairs, where preserved specimens wait for inspection.

And there I am confronted with a large case full of specimen jars. Each jar contains a late-term fetus, and all of the fetuses have the same disability: Their spinal column failed to fuse all the way around their spinal cord, leaving holes (called lesions) in their spine. Some extrude a bulging sac containing a section of the cord. These balloons make the fetuses appear as if they’re about to explode. This condition is called spina bifida.

Continue Reading

18th Annual Chronic Illness and Disability Conference: Transition from Pediatric to Adult-based Care

AUCD is proud to support the online broadcast of Baylor College of Medicine’s 18th Annual Chronic Illness and Disability Conference.

Source: AUCD

Participate Remotely

All MCH Training Programs and UCEDDs are invited and encouraged to participate remotely by hosting a live stream of this conference for trainees, faculty, staff, families, and others at your center or program. Eligible broadcast sites include MCH training programs, UCEDDs, and Title V programs. This is an excellent opportunity for your trainees and staff to gain in-depth coverage of a range of transition issues at a very low cost of $150 per site.

An Engaging Agenda

Hosted by Baylor College of Medicine and available nationwide through an AUCD-sponsored live broadcast, this year’s conference is shaping up to be a valuable resource for the AUCD network and beyond. Register as a broadcast site in order to:

  • Listen to Toronto Children’s Hospital share about the role that social media and digital communications can play in engaging transition-aged youth
  • Participate in a breakout session on Supported Decision Making
  • Learn about one LEND alumni’s work toward educate others on healthy sexuality for people with I/DD
  • Earn CME and CNE Credits, Social Work CEUs, and PT and OT CCUs without leaving the office

… and much more!

Register

To register as a broadcast site, contact Baylor College of Medicine, Office of Continuing Medical Education, at 713-798-8237 or e-mail cme@bcm.edu for instructions. For registration questions, contact Baylor’s Cicely Simon. To speak with someone at AUCD about this event, contact Sarah DeMaio

Why We Participate

“Minnesota LEND partners with Gillette Lifetime Specialty Clinic in co-hosting the live broadcast of this conference …to learn about evidence-based practices in the critical need area of healthcare transition. Gillette staff members were very excited about this opportunity to ‘attend’ Baylor’s conference at their work place. We hope to increase this type of collaborative learning each year for our clinical partners and trainees.” 

– Rebecca Dosch-Brown, MN LEND Training Coordinator

Baylor does an excellent job of addressing the task of facilitating adolescent transition as youth learn to navigate health care, post-secondary work or school, and independent living. The mixture of national and local presenters who come from clinical, research, policy, advocacy, and patient perspectives provide a well-rounded presentation of the realities of transition. The annual conference jumps starts our trainees’ knowledge and skill development regarding transition. It allows us to introduce a wide array of issues that would take us much longer to do with our own content development. We are grateful that we are able to gain so much with a relatively small investment on our part.

– David Deere, Arkansas Regional LEND Training Director

“WI LEND program works with our state Youth Health Transition Hub to host at least 2 sites in Wisconsin – Madison and Milwaukee. LEND trainees participate as they are able, but are a small part of the audience. We have mostly providers (nurses, SW, MD, other health professionals), our MCH PPC partners and trainees, and just a few families, who come to the broadcast.”

-Anne Harris, WI LEND Director

Safety of People with Intellectual Disabilities in Hospital. What Can the Hospital Pharmacist Do to Improve Quality of Care?

How can pharmacists can contribute to safety by improving health outcomes and reducing health inequalities for people with intellectual disabilities?

Source: Pharmacy | Free Full-Text

Author: Bernadette Flood

Abstract 

People with intellectual disabilities are vulnerable in healthcare environments. They experience health and healthcare inequalities, and when admitted to general hospitals are at a greater risk of patient safety incidents. This is well known in specialist services, but less recognized within primary or secondary healthcare. The most significant barriers to safer and better healthcare appear to include ‘invisibility’ of people with intellectual disabilities within health-care systems, widespread lack of staff understanding of intellectual disability, the vulnerabilities of people with intellectual disabilities, and the reasonable adjustment they may need in order to access health-care services. They may be ‘invisible’ to pharmacists in general hospitals. This article aims to raise awareness among those pharmacists and others providing care and support to people with intellectual disabilities in hospital in relation to how pharmacists can contribute to safety. Medication is the main therapeutic intervention in this population. Research is needed to determine the role of pharmacists in improving health outcomes and reducing health inequalities in this vulnerable population group when they are admitted to general hospitals. Full article
(This article belongs to the Special Issue Health Services Research in the Use of Medicines)

Attitudes towards people with physical or intellectual disabilities among nursing, social work and medical students (2017)

Source: Wiley Online Library Journal of Clinical Nursing

Authors: Kritsotakis, Galanis, Papastefanakis, Meidani, Philalithis, Kalokairinou, & Sourtzi

Abstract

Aims and objectives

To examine and compare undergraduate healthcare students’ attitudes toward people with physical or intellectual disabilities in Greece.

Background

The experience that people with disabilities have with health care is a complex interaction between their medical condition and the social and physical environment. Attitudes of the nursing and healthcare staff affect the quality of care and people’s adaptation to their disability, self-image and rehabilitation outcomes.

Design

Descriptive cross-sectional survey.

Methods

Nursing, Social Work, and Medicine students (N=1007, 79.4% female) attending three Universities (Athens, Crete) completed during 2014-2016 two standardized scales regarding physical (ATDP – B) and intellectual disability (CLAS – ID). Descriptive and multivariate logistic regression analyses were performed.

Results

Attitudes toward physically disabled people in Greece (ATDP – B scores) were poor with scores just above the mid-point. Medical studies and higher knowledge and contact with individuals with physical disabilities signified marginally more positive attitudes. Gender and age displayed no associations with attitudes. Regarding intellectual disability (CLAS–ID scores), nursing students had slightly less positive attitudes in ‘Similarity’ but more positive attitudes in ‘Sheltering’ subscales. Previous work and contact was related to more favourable and higher age to less favourable ‘Similarity’ and ‘Sheltering’ attitudes. Males had higher ‘Exclusion’ scores. Those who knew people with intellectual disabilities had less favorable ‘Empowerment’ attitudes. Knowledge was related to more positive attitudes in all four CLAS – ID subscales.

Conclusions

Greek health and social care students showed poor attitudes towards people with physical and intellectual disability.

This article is protected by copyright. All rights reserved.

Include “Low-Tech” Options to Share Health Information with People with Disabilities

Source: New Hampshire Disability & Public Health Project (DPH) Data Briefs & Reports

Health and medical information is commonly shared via web sites, social media, smart phone apps, and even text messaging. However, these high tech options are not accessible to all people. Adults with disabilities in New Hampshire (NH) are significantly less likely than adults without disabilities to have access to information electronically.

Download Health Communication Needs: Low Tech Options

New Hampshire Adults with Disabilities Need Better Diabetes Prevention Care

Source: New Hampshire Disability & Public Health Project (DPH) Data Briefs & Reports

In New Hampshire, adults with mobility and cognitive limitations are significantly more likely to experience diabetes (26%) than adults with no disability (9%).1 The disparity in diabetes prevalence results in higher costs to Medicaid programs and poorer health outcomes and quality of life for people with disabilities.2  Promising diabetes prevention care for adults with disabilities includes accessible and inclusive health promotion.

Several factors contribute to a higher risk of diabetes, including:

• Unhealthy eating habits that result, in part, from uninformed and limited food choices;

• Lack of physical activity due to social, environmental, and behavioral barriers; and

• Lack of knowledge and support to address risk factors for diabetes.

Download Diabetes Prevention

Pain and pain assessment in people with intellectual disability: Issues and challenges in practice

Source: 2017 – British Journal of Learning Disabilities – Wiley Online Library

Authors: Owen Doody, Maria E. Bailey

Abstract

Accessible summary

Pain is difficult to identify when people cannot communicate. If pain is not identified, it cannot be managed and causes stress. Pain assessment is essential in order to identify pain. Pain assessment requires a combination of knowledge, health assessments and observations.

Abstract

Background Individuals with intellectual disability experience the same chronic diseases and conditions as the general population, but are more likely to have physical and psychological co-morbidities, resulting in a higher risk of experiencing pain and having more frequent or severe pain.

Method This position paper aims to highlight the importance of pain assessment for people with intellectual disability. Results As people with intellectual disability live within the community and/or remain in the family home, they are accessing a wide range of healthcare services. This necessitates that nurses across all care settings are knowledgeable regarding appropriate/alternative pain assessment methods for people with intellectual disability. While many pain assessment tools are available for use with the intellectual disability population, they are often not well established or infrequently used to establish their validity.

Conclusion Although self-report is the gold standard in pain assessment, pain assessment for people with intellectual disability is often challenging as they may be unable to self-report their pain due to their levels of communication or cognitive ability. Assessment requires a combination of approaches amalgamating: pain assessment, health assessment and observation of behaviours.

“Tell me what they do to my body”: A survey to find out what information people with learning disabilities want with their medications

Fifty-eight people completed the questionnaire. Many of them said they did not get enough information about their medicine. Most people wanted easy-read leaflets and pictures.

Authors: Rebecca Fish, Chris Hatton, Umesh Chauhan

Source: British Journal of Learning Disabilities – 2017 – Wiley Online Library

Abstract

Accessible summary

We gave a questionnaire to self-advocates who were attending a conference. The questionnaire asked them how they felt about the information they get with their medicine. Fifty-eight people completed the questionnaire. Many of them said they did not get enough information about their medicine. Most people wanted easy-read leaflets and pictures. There are many different places to find easy-read information on the internet. We think they should be collected and checked. We also think that doctors and chemists need to spend more time with people to explain about medicines.

Abstract

Background Previous research has found that people with learning disabilities are not given prescription information that is tailored to their needs. We wanted to find out people’s information requirements.

Materials and Methods A questionnaire was co-produced by the authors and consultants with learning disabilities. It asked what information people received from their GP and pharmacist about medications. The questionnaire was circulated at a self-advocacy conference in the North of England. Fifty-eight self-advocates completed the questionnaire.

Results Information from GPs and pharmacists was mainly instructional, referring to when and how to take the medicine and dosage. Most respondents struggled to read the leaflets and remember verbal information. Many wanted the information in easy-read format, and some wanted pictures or diagrams as well. A key theme was that health professionals often talked only to carers or support workers rather than involving the patient directly, and some respondents disclosed that they were not informed about side effects or alternative medications.

Conclusions Health professionals should take time to discuss health issues and medication with the individual rather than only with carers. This could be facilitated by providing information in an accessible format.

Management and prevalence of long-term conditions in primary health care for adults with intellectual disabilities compared with the general population: A population-based cohort study

Source: JARID

Sally-Ann Cooper, Laura Hughes-McCormack, Nicola Greenlaw, Alex McConnachie, Linda Allan, Marion Baltzer, Laura McArthur, Angela Henderson, Craig Melville, Paula McSkimming, Jill Morrison First published: 20 July 2017

Abstract

Background In the UK, general practitioners/family physicians receive pay for performance on management of long-term conditions, according to best-practice indicators.

Method Management of long-term conditions was compared between 721 adults with intellectual disabilities and the general population (n = 764,672). Prevalence of long-term conditions was determined, and associated factors were investigated via logistic regression analyses.

Results Adults with intellectual disabilities received significantly poorer management of all long-term conditions on 38/57 (66.7%) indicators. Achievement was high (75.1%–100%) for only 19.6% of adults with intellectual disabilities, compared with 76.8% of the general population. Adults with intellectual disabilities had higher rates of epilepsy, psychosis, hypothyroidism, asthma, diabetes and heart failure. There were no clear associations with neighbourhood deprivation.

Conclusions Adults with intellectual disabilities receive poorer care, despite conditions being more prevalent. The imperative now is to find practical, implementable means of supporting the challenges that general practices face in delivering equitable care.

What Effect Does Transition Have on Health and Well-Being in Young People with Intellectual Disabilities? A Systematic Review

 Source: JARID

Background Transition to adulthood might be a risk period for poor health in people with intellectual disabilities. However, the present authors could find no synthesis of evidence on health and well-being outcomes during transition in this population. This review aimed to answer this question. MethodPRISMA/MOOSE guidelines were followed. Search terms were defined, electronic searches of six databases were conducted, reference lists and key journals were reviewed, and grey literature was searched. Papers were selected based on clear inclusion criteria. Data were extracted from the selected papers, and their quality was systematically reviewed. The review was prospectively registered on PROSPERO: CRD42015016905. Results A total of 15 985 articles were extracted; of these, 17 met the inclusion criteria. The results of these articles were mixed but suggested the presence of some health and well-being issues in this population during transition to adulthood, including obesity and sexual health issues. Conclusion This review reveals a gap in the literature on transition and health and points to the need for future work in this area.

1 2 3 9