“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.

Internet and cell phone usage patterns among young adults with intellectual disabilities

Source: JARID

Authors Cristina Jenaro, Noelia Flores, Maribel Cruz, Ma Carmen Pérez, Vanessa Vega, Víctor A Torres

First published: 24 July 2017

Abstract

Background

The risks and opportunities associated with the use of technologies are of growing research interest. Patterns of technology usage illuminate these opportunities and risks. However, no studies have assessed the usage patterns (frequency, duration, and intensity) and related factors in young people with intellectual disabilities.

Methods

Questionnaires on Internet and cell phone usage patterns, the Internet Over-Use Scale and the Cell-Phone Over-Use Scale, as well as the Beck Depression Inventory were filled out in one-on-one interviews of 216 youth with intellectual disabilities.

Results

Young people with disabilities make more social and recreational rather than educational use of these tools, and show higher rates of excessive use of both technologies than a comparison group of 410 young people without disabilities. Also, their overuse is associated with other unhealthy behaviors.

Conclusion

The framework of support needs of people with disabilities should be considered to promote healthy Internet and cell phone use.

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.

The Peter and Elizabeth C. Tower Foundation | Intellectual Disabilities

To be eligible for funding, organizations must be located in or primarily serve residents in one of the following geographic areas:
Barnstable, Dukes, Essex, and Nantucket Counties of Massachusetts; Erie and Niagara Counties of New York.

Source: The Peter and Elizabeth C. Tower Foundation | Intellectual Disabilities

The Tower Foundation will now offer three opportunities per year to apply for funding for its Core Programs and Services grants (in Intellectual DisabilitiesLearning DisabilitiesMental Health, and Substance Use Disorders) as well as for Technology and Small Grants. This change from an annual cycle will ensure a shorter process that will help to lessen the administrative burden on grantees.  Learn more here.

For our Intellectual Disabilities category, we have identified four key goals:

  1. Children with intellectual disabilities are identified early and receive services that meet their evolving needs.
  2. Young people with intellectual disabilities are engaged in meaningful, social, vocational, and educational pursuits.
  3. Families understand intellectual disabilities and secure needed supports.
  4. Communities embrace persons with intellectual disabilities and provide them with a full range of supports and opportunities to engage in community life.

Preferred Strategies

While open to creative approaches, some preferred strategies for supporting our goals include:

  • Screening and Assessment
  • Community-Based Education and Supports
    – Community and Professional Education
    – Family Supports
  • Transition/Service Navigation

For More Information

If you are interested in submitting a grant application, please see our 2017 Core Programs and Services Guidelines.  Subscribe to our mailing list to be notified when guidelines are posted.

2017 National Research Summit on Care, Services and Supports for Persons with Dementia and Their Caregivers

The National Research Summit on Care, Services and Supports for Persons with Dementia and Their Caregivers is two-day meeting of researchers, service providers, persons with dementia, family caregivers, and other stakeholder groups.

Source: 2017 National Research Summit on Care, Services and Supports for Persons with Dementia and Their Caregivers

Registration is open for the 2017 National Research Summit on Care, Services and Supports for Persons with Dementia and Their Caregivers.

Registration is free, but space is limited so please register as soon as possible if you want to attend in-person on the NIH campus. To register, click here. If you prefer to watch the videocast, please register and choose the “videocast” option. A link and additional details will be sent to you approximately one-week prior to the event.

The Summit is two-day meeting of researchers, service providers, persons with dementia, family caregivers, and other stakeholder groups. It will be held at the Natcher Building’s Ruth L. Kirschstein Auditorium of the National Institutes of Health in Bethesda, Maryland, on October 16 and 17, 2017, and it is free and open to the public.

The Summit is intended to identify what we know now and what we still need to learn in order to accelerate the development, evaluation, translation, implementation, and scaling up of comprehensive care, services, and supports for persons with dementia, families, and other caregivers.

We are very pleased to announce that Prof. Tamar Heller, the chair of the ad hoc working group on caregiving on dementia and intellectual disability (commissioned by the NTG) will be speaking at the Summit and conveying the recommendations made by the group on behalf of the NTG. The working group’s report will shortly be posted on the NTG website.

The Summit is focused on research that is needed to improve quality of person- and family-centered care and outcomes across care settings, including quality of life and the lived experience of persons with dementia and their caregivers. To view the draft agenda and list of speakers, click here.

If you are interested in attending, please register early and arrange for your lodging as soon as possible as this will be a very popular event. The location in Bethesda has limited hotel space near by, but the NIH campus is on the Metro’s Red Line (Medical Center station) — so access from anywhere in the metropolitan DC area is fairly easy.

If you do decide to attend, please let us know so we can keep in touch about any ancillary activities related to the NTG.

It will be held at the Natcher Building’s Ruth L. Kirschstein Auditorium of the National Institutes of Health in Bethesda, Maryland, on October 16 and 17, 2017, and it is free and open to the public. The Summit is intended to identify what we know now and what we still need to learn in order to accelerate the development, evaluation, translation, implementation, and scaling up of comprehensive care, services, and supports for persons with dementia, families, and other caregivers. The Summit is focused on research that is needed to improve quality of person- and family-centered care and outcomes across care settings, including quality of life and the lived experience of persons with dementia and their caregivers.Please note: If you cannot attend the Summit in-person, the event will be live-streamed. If you prefer to watch the videocast, please register and choose the “videocast” option. A link and additional details will be sent to you approximately one-week prior to the event.

 

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.

 

 

Advocacy Skill Building Toolkit – Rural RTC

Advocacy Skill Building Toolkit

Source: Advocacy Skill Building Toolkit – RTC:Rural

This toolkit is a guide for Centers for Independent Living and others to conduct interactive and engaging workshops to facilitate the development of advocacy skills of emerging Independent Living leaders and youth with disabilities. It describes how to introduce advocacy through the facilitation of unique activities and discussions, identifying issues of importance, and putting advocacy skills into practice. A unique approach presented in this toolkit is the use of improv to introduce, invite, and engage others into and with the world of advocacy.

Using improv hones communication and public speaking skills, stimulates fast thinking, and encourages engagement with ideas, all skills that are important for effective advocacy. Improv also provides a supportive environment that allows participants to take risks, try out new ideas, and build their confidence. The activities incorporate different learning styles, and can easily be modified to accommodate everyone.

An important part of advocacy, no matter if the goal is to help one person or many, is establishing a confident voice, developed and supported by a community of peer support. This workshop and accompanying toolkit materials give participants the opportunity to explore their voices, build confidence, and display their skills both verbally as well as in written form. The intent is to provide a safe space among peers and trusted facilitators to introduce the concept of both group and self-advocacy.

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

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About the Source Data
National Crime Victimization Survey (NCVS)
To cite this product, use the following link:
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