Defining consensus norms for palliative care of people with intellectual disabilities in Europe, using Delphi methods: A White Paper from the European Association of Palliative Care

Palliative Medicine
Irene Tuffrey-WijneDavid Oliver

Abstract

People with intellectual disabilities often present with unique challenges that make it more difficult to meet their palliative care needs. To define consensus norms for palliative care of people with intellectual disabilities in Europe. Delphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for Palliative Care reviewed and approved the final version. Taskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members' networks. A total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, ...Continue Reading

References

Mar 5, 2004·Journal of Abnormal Child Psychology·Heather A K Jacques, Eric J Mash
Jan 26, 2006·Mental Retardation and Developmental Disabilities Research Reviews·Gloria L KrahnAnne Turner
Aug 7, 2008·International Journal of Palliative Nursing·Irene Tuffrey-Wijne, Linda McEnhill
Jul 2, 2009·The British Journal of General Practice : the Journal of the Royal College of General Practitioners·Irene Tuffrey-WijneSheila Hollins
Sep 29, 2009·Journal of Pain and Symptom Management·Liz GwytherRichard Harding
Feb 26, 2010·European Journal of Oncology Nursing : the Official Journal of European Oncology Nursing Society·Irene Tuffrey-WijneSheila Hollins
Jan 18, 2012·Palliative Medicine·Irene Tuffrey-Wijne
Nov 22, 2012·American Journal on Intellectual and Developmental Disabilities·Sandra L FriedmanAshley C Woodman
Apr 13, 2013·Journal of Applied Research in Intellectual Disabilities : JARID·Stuart ToddRachel Forrester-Jones
Jul 3, 2013·Journal of Pain and Symptom Management·Maaike L De RooUNKNOWN EURO IMPACT
Jul 6, 2013·Palliative Medicine·Jenny T van der SteenUNKNOWN European Association for Palliative Care (EAPC)
Oct 16, 2013·Current Opinion in Supportive and Palliative Care·Carlos Centeno, José Mario López Saca

❮ Previous
Next ❯

Citations

Apr 6, 2017·Journal of Applied Research in Intellectual Disabilities : JARID·Nicola McKenzieSharon Brandford
May 10, 2017·Journal of Applied Research in Intellectual Disabilities : JARID·Philip McCallionUNKNOWN Working Group of the International Summit on Intellectual Disability and Dementia
May 26, 2017·Journal of Applied Research in Intellectual Disabilities : JARID·Jacqueline McGinleyBrian Clemency
May 26, 2017·Journal of Applied Research in Intellectual Disabilities : JARID·Andrea Grindrod, Bruce Rumbold
Jul 3, 2018·Journal of Applied Research in Intellectual Disabilities : JARID·Cis VrijmoethMarieke Groot
Dec 21, 2018·International Journal of Palliative Nursing·Irene Tuffrey-Wijne, Jason Davidson
Sep 7, 2017·Journal of Applied Research in Intellectual Disabilities : JARID·Rachel Forrester-JonesClaire Bates
Aug 24, 2019·Journal of Applied Research in Intellectual Disabilities : JARID·Hille VossAnke J E de Veer
Jun 2, 2020·Journal of Applied Research in Intellectual Disabilities : JARID·Stuart ToddKatherine Hunt
Jul 29, 2020·Augmentative and Alternative Communication : AAC·Gillian S TownendLeopold M G Curfs
Jun 2, 2021·Journal of Applied Research in Intellectual Disabilities : JARID·Hanna W NoorlandtMichael Echteld
Sep 14, 2021·Palliative Medicine·Melissa J Bloomer, Joanne Watson

❮ Previous
Next ❯

Software Mentioned

Monkey Lime Survey

Related Concepts

Trending Feeds

COVID-19

Coronaviruses encompass a large family of viruses that cause the common cold as well as more serious diseases, such as the ongoing outbreak of coronavirus disease 2019 (COVID-19; formally known as 2019-nCoV). Coronaviruses can spread from animals to humans; symptoms include fever, cough, shortness of breath, and breathing difficulties; in more severe cases, infection can lead to death. This feed covers recent research on COVID-19.

Blastomycosis

Blastomycosis fungal infections spread through inhaling Blastomyces dermatitidis spores. Discover the latest research on blastomycosis fungal infections here.

Nuclear Pore Complex in ALS/FTD

Alterations in nucleocytoplasmic transport, controlled by the nuclear pore complex, may be involved in the pathomechanism underlying multiple neurodegenerative diseases including Amyotrophic Lateral Sclerosis and Frontotemporal Dementia. Here is the latest research on the nuclear pore complex in ALS and FTD.

Applications of Molecular Barcoding

The concept of molecular barcoding is that each original DNA or RNA molecule is attached to a unique sequence barcode. Sequence reads having different barcodes represent different original molecules, while sequence reads having the same barcode are results of PCR duplication from one original molecule. Discover the latest research on molecular barcoding here.

Chronic Fatigue Syndrome

Chronic fatigue syndrome is a disease characterized by unexplained disabling fatigue; the pathology of which is incompletely understood. Discover the latest research on chronic fatigue syndrome here.

Evolution of Pluripotency

Pluripotency refers to the ability of a cell to develop into three primary germ cell layers of the embryo. This feed focuses on the mechanisms that underlie the evolution of pluripotency. Here is the latest research.

Position Effect Variegation

Position Effect Variagation occurs when a gene is inactivated due to its positioning near heterochromatic regions within a chromosome. Discover the latest research on Position Effect Variagation here.

STING Receptor Agonists

Stimulator of IFN genes (STING) are a group of transmembrane proteins that are involved in the induction of type I interferon that is important in the innate immune response. The stimulation of STING has been an active area of research in the treatment of cancer and infectious diseases. Here is the latest research on STING receptor agonists.

Microbicide

Microbicides are products that can be applied to vaginal or rectal mucosal surfaces with the goal of preventing, or at least significantly reducing, the transmission of sexually transmitted infections. Here is the latest research on microbicides.