“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.

How I bridge 2 worlds as a deaf medical student

Growing up as a deaf person has given me unique insights into patient care, which I hope to incorporate into my practice when I’m a physician.

Source: How I bridge 2 worlds as a deaf medical student

 

I was born profoundly deaf in both ears, which means I could only hear sound above 95 decibels. Without hearing aids, I could hear extremely loud sounds, such as a plane taking off or a train going by, only if I was near them. With hearing aids, I could hear sound at 40 decibels and up, so I could understand one-on-one conversations as long as there was no background noise, the person didn’t mumble and I could see his or her mouth clearly.

Before starting medical school, I got a cochlear implant, which helps me hear so much more than I could before. When I listen to music now, I can hear all the different sounds rather than one static sound, and it’s much easier to differentiate between the instruments. Understanding speech has also become much easier. I now communicate orally with hearing people and via sign language with deaf people. However, I am still deaf, and there are still times when I am unable to understand what people are saying, such as group settings where there’s a lot of ambient noise.

I chose osteopathic medicine because I heard from many patients who spoke highly of DOs, and the osteopathic philosophy resonated with me as well. I strongly believe in treating the person as a whole and that lifestyle factors can dramatically affect a person’s health. Ultimately, I hope to become an obstetrician-gynecologist. I’d like my practice to include caring for deaf patients—some deaf people have very little health literacy due to communication barriers growing up, which is something I hope to combat.

Culture and communication

Growing up as a deaf person has given me insights I hope to incorporate in my future practice as a physician. The first is the importance of maintaining eye contact during conversations. That’s not only because it helps me lip-read and understand what’s being said; eye contact shows that you are truly listening to the other person. It shows respect.

Secondly, because of growing up in the deaf culture, I’m very aware that all cultures are different. Physicians may not encounter deaf patients frequently, but they will definitely care for patients who have special needs when receiving medical care, such as a disability or an interpreter if English isn’t their primary language. As a patient, I’ve learned that I need to speak up about my needs, because sometimes people just are not aware. As a physician, I’ll know to ask patients what they need.

Victoria MacPherson, OMS II (center), attends the Philadelphia College of Osteopathic Medicine, as do Victoria Gordon, OMS II, (left) and Helen Lesser, OMS II (right). (Photo provided by Victoria MacPherson)

Tips for physicians

Physicians should keep in mind that American Sign Language is its own language, so written English doesn’t automatically translate to ASL. A deaf person who uses exclusively ASL and is not fluent in English might have trouble understanding written text, which is why some patients prefer to use an interpreter.

At the end of the visit, I appreciate being asked to repeat back my treatment plan so my physician can be sure I fully understand what was said. Receiving a written copy of my doctor’s recommendations is also very helpful—that’s probably true for any patient, not only those who are deaf.

If you’re unsure how to communicate with a patient who is deaf, or anyone with a disability, just ask! I suggest language such as, “I believe in offering top-notch accessible care. Do you need any special accommodations?” Then let the patients explain to you what they need, because they are the experts on themselves.

Developing a medical picture book for reducing venipuncture distress in preschool-aged children

Source: International Journal of Nursing Practice

Ying Tsao, Hui-Chen Kuo, Hsui-Chuan Lee and Shuenn-Jiun Yiin
Version of Record online: 20 JUL 2017 | DOI: 10.1111/ijn.12569

Abstract

Aim

Distress associated with needle-related procedures is a major concern in preschool-aged children nursing. This study developed a medical picture book for supporting preschool-aged children facing a venipuncture and determined the effectiveness of such a book intervention in decreasing behavioural distress.

Methods

The picture book was designed in 3 stages: developing stories on medical situations, penning the text, and drafting the book. We conducted a quasiexperimental study to examine the effectiveness of the book. The behavioural distress of the control and picture book groups were assessed before, during, and after the intervention by using the Observational Scale of Behavioral Distress-Revised (OSBD-R).

Results

We created a 12-page picture book, Sick Rui-Rui Bear, in which cartoon characters were depicted undergoing venipunctures, as a guide for vein injection and for facilitating positive venipuncture outcomes in preschool-aged children. Over time, the OSBD-R scores of the picture book group were significantly lower than those of the control group (P < .001).

Conclusion

We recommend the picture book be routinely read and used during venipunctures to decrease procedural distress in preschool-aged children.

SUMMARY STATEMENT
What is already known about this topic?

  • Venipunctures may cause varying levels of distress in preschool-aged children. Pain is experienced during venipunctures, which often terrifies children and prolongs the intravenous procedures and the associated displeasure.
  • Although some picture books have been used to describe the medical procedures to children, to our knowledge, the process of venipunctures has not been explained for preschool-aged children.

What this paper adds: (research findings/key new information)

  • We created a picture book titled Sick Rui-Rui Bear, in which cartoon characters were depicted as receiving venipunctures. This 12-page book is a guide to vein injection and is aimed at facilitating excellent venipuncture outcomes for preschool-aged children.
  • We adopted analytical statistics to compare the behavioural distress scores of the control and venipuncture picture book groups. Results showed that the picture book group had significantly lower scores of OSBD-R over time than that of the control group.

The implications of this paper: (how findings influence or can be used to change policy/practice/research/education)

  • When administering a venipuncture, nurses should be concerned about the distress in preschool-aged children. Interaction among nurses, parents, and preschool-aged children can be stimulated by providing them with a venipuncture picture book, thereby enabling preschool-aged children to face such a medical treatment experience.
  • Nurses can use a venipuncture picture book to reduce distress in preschool-aged children during vein injection.

 

 

Crisis Trends – Crisis Text Line

Crisis Trends aims to empower journalists, researchers, school administrators, parents and all citizens to understand the crises Americans face so we can work together to prevent future crises from happening.

Source: Crisis Trends – Crisis Text Line

Explore trends across texter conversations across all states in the U.S. http://crisistrends.org/

Crisis Text Line: Text 741-741 from anywhere in the USA, anytime, about any type of crisis.

Crime Against Persons with Disabilities, 2009-2015

…for each age group measured except persons age 65 or older, the rate of violent victimization against persons with disabilities was at least 2.5 times the unadjusted rate for those without disabilities.

…persons with cognitive disabilities had the highest victimization rate among the disability types measured for total violent crime…

Source: Bureau of Justice Statistics (BJS) – Crime Against Persons with Disabilities, 2009-2015 – Statistical Tables

Erika Harrell, Ph.D., BJS Statistician

July 11, 2017    NCJ 250632

Presents 2009-2015 National Crime Victimization Survey (NCVS) estimates of nonfatal violent crime (rape or sexual assault, robbery, aggravated assault, and simple assault) against persons age 12 or older with disabilities. Disabilities are classified according to six limitations: hearing, vision, cognitive, ambulatory, self-care, and independent living. The report compares the victimization of persons with and without disabilities living in noninstitutionalized households, including distributions by sex, race, Hispanic origin, age, disability type, and other victim characteristics. It also includes crime characteristics, such as victim-offender relationship, time of crime, reporting to police, and use of victim services agencies. NCVS data were combined with data from the U.S. Census Bureau’s American Community Survey to generate victimization rates.

Highlights:

  • During the 5-year aggregate period from 2011 to 2015, for each age group measured except persons age 65 or older, the rate of violent victimization against persons with disabilities was at least 2.5 times the unadjusted rate for those without disabilities.
  • Among those with disabilities, persons ages 12 to 15 (144.1 per 1,000 age 12 or older) had the highest rate of violent victimization among all age groups measured.
  • The rate of violent victimization against males with disabilities was 31.8 per 1,000, compared to 14.1 per 1,000 males without disabilities.
  • For females with disabilities, the rate of violent victimization was 32.8 per 1,000, compared to 11.4 per 1,000 females without disabilities.
  • Males and females had similar rates of total violent victimization in every disability type measured, except independent living disabilities.

Part of the Crime Against People with Disabilities Series

Summary (PDF 197K)
PDF (1M)
ASCII file (27K)
Comma-delimited format (CSV) (Zip format 46K)

Help for using BJS products

About the Source Data
National Crime Victimization Survey (NCVS)
To cite this product, use the following link:
http://www.bjs.gov/index.cfm?ty=pbdetail&iid=5986

View All Publications and Products

Mirror, Mirror 2017: International Comparison Reflects Flaws and Opportunities for Better U.S. Health Care

In the United States—more than in 11 other wealthy countries—the health care you receive varies with your level of income, according to a new Commonwealth Fund report.

Source: Mirror, Mirror 2017: International Comparison Reflects Flaws and Opportunities for Better U.S. Health Care

The United States Health System Falls Short

 The United States spends far more on health care than other high-income countries, with spending levels that rose continuously over the past three decades (Exhibit 1). Yet the U.S. population has poorer health than other countries. 1 Life expectancy, after improving for several decades, worsened in recent years for some populations, aggravated by the opioid crisis. 2 In addition, as the baby boom population ages, more people in the U.S.—and all over the world—are living with age-related disabilities and chronic disease, placing pressure on health care systems to respond.

Timely and accessible health care could mitigate many of these challenges, but the U.S. health care system falls short, failing to deliver indicated services reliably to all who could benefit. 3 In particular, poor access to primary care has contributed to inadequate prevention and management of chronic diseases, delayed diagnoses, incomplete adherence to treatments, wasteful overuse of drugs and technologies, and coordination and safety problems.

This report uses recent data to compare health care system performance in the U.S. with that of 10 other high-income countries and considers the different approaches to health care organization and delivery that can contribute to top performance. We based our analysis on 72 indicators that measure performance in five domains important to policymakers, providers, patients, and the public: Care Process, Access, Administrative Efficiency, Equity, and Health Care Outcomes.

Our data come from a variety of sources. One is comparative survey research. Since 1998, The Commonwealth Fund, in collaboration with international partners, has supported surveys of patients and primary care physicians in advanced countries, collecting information for a standardized set of metrics on health system performance. Other comparative data are drawn from the most recent reports of the Organization for Economic Cooperation and Development (OECD), the European Observatory on Health Systems and Policies, and the World Health Organization (WHO).

Continue Reading

How to Make Healthcare Accessible for All

Source: University of Washington, Healthy Aging RRTC

Healthcare access is important for all individuals, especially for people with disabilities. However, people with disabilities don’t always receive the healthcare they need. Several barriers can make it harder for them to access critical healthcare services or build optimal working relationships with their providers. Fortunately, by being aware of these barriers, we can overcome them with changes in design, training, and policy.

Download How to Make Healthcare Accessible for All

1 3 4 5 6 7 12