Loneliness in people with intellectual and developmental disorders across the lifespan: A systematic review of prevalence and interventions – Alexandra – 2018 – JARID

The aim of the study was to conduct the first systematic review investigating the prevalence of loneliness in people with intellectual developmental disabilities (IDD) and the interventions targeting loneliness.

Source: Loneliness in people with intellectual and developmental disorders across the lifespan: A systematic review of prevalence and interventions – Alexandra – 2018 – Journal of Applied Research in Intellectual Disabilities – Wiley Online Library

Abstract

Background

The aim of the study was to conduct the first systematic review investigating the prevalence of loneliness in people with intellectual developmental disabilities (IDD) and the interventions targeting loneliness.

Method

A search across five databases was conducted (May 2016–June 2016). One reviewer (A. P.) selected the articles for inclusion and assessed their risk of bias using a standardized tool. The second reviewer (A. H.) examined the list of included/excluded articles and the ratings of the studies.

Results

Five prevalence studies met the inclusion criteria and provided an average loneliness prevalence of 44.74%. Only one intervention study was included, and it demonstrated that there was not any significant group difference for loneliness outcomes (= .21). The majority of the studies had a weak quality rating.

Conclusion

The systematic review evidenced that loneliness is a common experience in people with IDD and there is a need to extend current research.

 

Embedding routine health checks for adults with intellectual disabilities in primary care: practice nurse perceptions – Macdonald – 2018 – JIDR

Qualitative study in General Practices located in NHS Greater Glasgow and Clyde, Scotland, UK.MethodEleven practice nurses from 11 intervention practices participated in a semi-structured interview. Analysis was guided by a framework approach.

Source: Embedding routine health checks for adults with intellectual disabilities in primary care: practice nurse perceptions – Macdonald – 2018 – Journal of Intellectual Disability Research – Wiley Online Library

Abstract

Background

Adults with intellectual disabilities (IDs) have consistently poorer health outcomes than the general population. There is evidence that routine health checks in primary care may improve outcomes. We conducted a randomised controlled trial of practice nurse led health checks. Here, we report findings from the nested qualitative study.

Aim

To explore practice nurse perceptions and experience of delivering an anticipatory health check for adults with IDs.

Design and Setting

Qualitative study in General Practices located in NHS Greater Glasgow and Clyde, Scotland, UK.

Method

Eleven practice nurses from 11 intervention practices participated in a semi-structured interview. Analysis was guided by a framework approach.

Results

Practice nurses reported initially feeling ‘swamped’ and ‘baffled’ by the prospect of the intervention, but early misgivings were not realised. Health checks were incorporated into daily routines with relative ease, but this was largely contingent on existing patient engagement. The intervention was thought most successful with patients already well known to the practice. Chronic disease management models are commonly used by practice nurses and participants tailored health checks to existing practice. It emerged that few of the nurses utilised the breadth of the check instead modifying the check to respond to individual patients’ needs. As such, already recognised ‘problems’ or issues dominated the health check process. Engaging with the health checks in this way appeared to increase the acceptability and feasibility of the check for nurses. There was universal support for the health check ethos, although some questioned whether all adults with IDs would access the health checks, and as a consequence, the long-term benefits of checks.

Conclusion

While the trial found the intervention to be dominant over standard health care, the adjustments nurses made may not have maximised potential benefits to patients. Increasing training could further improve the benefits that health checks provide for people with IDs.

2016 Disability Status Report

Disability Statistics
2016 Disability Status Report
http://bit.ly/2GfvPhN
This annual report from Cornell University provides a summary of the most recent demographic and economic statistics on the non-institutionalized population with disabilities. The report includes information about the population size and disability prevalence for various demographic subpopulations. Statistics related to employment, earnings, household income, veterans’ service-connected disability and health insurance are also included.

Download 2016-Disability_Status_Report_US

PCPID Releases Report on Direct Support Workforce | Administration for Community Living

February 14, 2018 The President’s Committee for People with Intellectual Disabilities (PCPID) has released its 2017 report, America’s Direct Support Workforce Crisis: Effects on People with Intellectual Disabilities, Families, Communities and the U.S. Economy.

Source: PCPID Releases Report on Direct Support Workforce | ACL Administration for Community Living

Direct support professionals (DSPs) provide services and supports that empower people with intellectual disabilities to live in the community.

In the report, PCPID notes that DSPs promote participation in the U.S. economy “by helping people with an (intellectual disability) get jobs and by enabling family members to work.”  The report describes the current state of the DSP workforce as a “crisis,” noting that the average DSP wage is $10.72, most work two or three jobs, and the average annual DSP turnover rate is 45%.

The report also explores:

  • How these issues affect individuals, families, and human services systems.
  • The factors that contribute to these issues
  • Promising practices to strengthen the direct support workforce

PCPID serves in an advisory capacity to the President of the United States and the Secretary of Health and Human Services (HHS) promoting policies and initiatives that support independence and lifelong inclusion of people with intellectual disabilities in their respective communities. The committee includes representatives from several federal agencies and 13 citizen members.

Read the full report (PDF) or a plain-language version (PDF).

Broad PCORI Funding Announcements – Cycle 1 2018 (for Addressing Disparities, Assessment of Options, Communication and Dissemination Research, Improving Healthcare Systems) | PCORI

Source: Broad PCORI Funding Announcements – Cycle 1 2018 (for Addressing Disparities, Assessment of Options, Communication and Dissemination Research, Improving Healthcare Systems) | PCORI

Letters of Intent are due Tuesday, February 13, 2018, by 5:00 p.m. ET.
Those selected to submit a full application will be notified by Wednesday, March 14, 2018.
Full applications are due Wednesday, May 16, 2018, by 5:00 p.m. ET.

The Broad PCORI Funding Announcements (PFAs) seek investigator-initiated applications for patient-centered comparative clinical effectiveness research (CER) projects aligned with our priority areas for research. This PFA covers the following four priority areas: Addressing Disparities; Assessment of Prevention, Diagnosis, and Treatment Options; Assessment of Prevention, Diagnosis, and Treatment Options; Communication and Dissemination Research; and Improving Healthcare Systems. We are looking for your best ideas to address needs of patients, caregivers, clinicians, and other healthcare stakeholders in making personalized clinical decisions across a wide range of conditions, populations, and treatments.

These broad areas encompass the patient-centered comparative clinical effectiveness research we support. As our work progresses and we engage with a broad range of patients, caregivers, clinicians, and other healthcare stakeholders, we may develop additional national priorities for research.

Our National Priorities for Research and Research Agenda is a framework to guide our funding of comparative clinical effectiveness research that will give patients and those who care for them the ability to make better-informed health decisions. The framework was developed by workgroups of our Board of Governors, members of our Methodology Committee, and staff. It was revised in response to public comments and accepted by the Board on May 21, 2012.

Deborah Munroe Noonan Memorial Research Fund – Health Resource in Action

Source: Deborah Munroe Noonan Memorial Research Fund – Health Resource in Action

The Deborah Munroe Noonan Memorial Research Fund, established in 1947 by Frank M. Noonan in memory of his mother, continues its proud tradition of supporting improvements in the quality of life for children with disabilities with one-year grants up to $80,000 (inclusive of 20% indirect costs). Recognizing that children’s health services and supports are provided in a wide range of community settings as well as hospitals, the Noonan Research program welcomes research proposals from both nonprofit organizations and academic institutions that serve children with physical or developmental disabilities and associated health-related complications. Eligible organizations and target populations must be within the Fund’s geographic area of interest of Greater Boston. Neither a faculty position nor an advanced degree is required.

The Sara Elizabeth O’Brien Trust, Bank of America, N.A., Trustee, will support up to one additional project submitted to the Noonan Research Fund focusing on medical research related to blindness in children and adolescents.  Please note, the O’Brien Trust does not fund work on other visual impairments, e.g., strabismus. The O’Brien Trust is not restricted to the Noonan geography specified by the Noonan Research program.

Proposals for basic science research will not be considered (except for proposals focused on blindness funded by the O’Brien Trust), nor will applications for capital costs such as buildings, renovations, or major equipment items. The Noonan Fund does not support direct service, primary prevention projects, or primary medical conditions such as obesity or device development. Drug trials are not supported by the Noonan Research Fund.

Compounded Disparities: Health Equity at the Intersection of Disability, Race, and Ethnicity

Source: Compounded Disparities: Health Equity at the Intersection of Disability, Race, and Ethnicity – NEW : Health and Medicine Division

DOWNLOAD PDF: Compounded Disparities – Intersection of Disabilities Race and Ethnicity

‘It’s Not Easy’: School Nurse Pain Assessment Practices for Students with Special Needs

Brenna L. Quinn PhD, RN, NCSN

Assistant Professor, Susan & Alan Solomont School of Nursing, Email: Brenna_Quinn@uml.edu

Abstract

Assessing pain in children with special needs presents unique challenges for school nurses, as no evidence-based or clinical standards to guide practices have been established for use in the school setting. Additionally, school nurse staffing has not kept pace with the growth in the population of children with special needs, which has increased by 60% since 2002. The aim of this study was to explore school nurses’ pain assessment practices for students with special needs. A cross-sectional study was conducted via the web. Participants/Subjects: Of 3,071 special needs school nurses invited, 27% participated (n = 825). STATA13 was used to analyze descriptive statistics, while content analysis was performed in NVIVO 10. The majority of participants assessed pain in students with special needs using objective assessments (97.34%) and consultations with teachers (91.09%) and parents (88.64%). School nurses utilize pain assessment methods used previously in other practice areas, and rated pain assessment practices at the low benchmark of adequate. Overall, school nurses assess pain by selecting approaches that are best matched to the abilities of the student with special needs. When assessing students with special needs, nurses should utilize objective clinical assessments, teacher consultations, and parent input scales. In addition to continuing education, policies facilitating lower nurse-to-student ratios are needed to improve pain assessment practices in the school setting. Research to understand the perspectives of nurses, teachers, parents, and students is needed to support the creation of evidence-based policies and procedures.

PMID: 27105572; DOI:10.1016/j.pmn.2016.01.005

Blind Spot: Understanding a disabled son’s vulnerability as a state of grace

American Journal of Nursing

Blind Spot: Understanding a disabled son’s vulnerability as a state of grace by Diane Stonecipher, BSN, RN

“His IQ may have been devastated, but his EQ has not. He has lived 25 years on this earth and his experiences are valuable and visceral to him.”

Diane Stonecipher is a nurse living and working in Texas. Contact author: bobcipher@yahoo.com. 

National Council for Aging Care’s Comprehensive Guide on Exercising for Seniors

Comprehensive Guide on Exercising for Seniors

When people think about their later years, they usually imagine a life freed from work or career commitments. They hope, too, that this new freedom will allow them to give their full attention to family, friends, and the activities they feel most passionate about. Making this dream a reality, however, requires health and independence, which in turn require a renewed commitment to staying healthy in general and to maintaining that health through exercise.

The good news, though, is that exercise confers all the same benefits to seniors that it does to those earlier in life, including increased longevity, improved mental clarity, a boost in energy, and greater strength to meet the physical demands of daily living. This is true even if you don’t start exercising until your later years. And while older people tend to become more sedentary as retirement and the challenges of old age restrict their activities, that doesn’t mean that you can’t make a reasonable course of exercise a part of your life or the life of a loved one.

With that in mind, here is everything you need to know about keeping an active lifestyle well into your senior years.

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