The views of adults with neurodegenerative diseases on end-of-life care: a metasynthesis

Aging & Mental Health
Laurence ReganJane Simpson

Abstract

Improving end-of-life care for people with neurodegenerative diseases is seen as a clinical priority. In order to do this, it is important to take into account the views expressed by people with these conditions on their experiences of this care. The purpose of this review was to provide a thematic synthesis of the views of adults with neurodegenerative diseases on end-of-life care. After a systematic search, 13 articles were included and thematic synthesis was used to collate and interpret findings. Four analytical themes were identified; (1) Importance of autonomy and control; (2) Informed decision-making and the role of healthcare professionals; (3) Contextual factors in decision-making; (4) The pitfalls of care. Participants' views were framed by the context of their lives and experience of their illness and these shaped their engagement with end-of-life care. Given the varying disease trajectories, care needs to be individualised and needs-based, implementing palliative care in a timely way to prevent crises and loss of autonomy.

References

Jan 1, 1985·Teratogenesis, Carcinogenesis, and Mutagenesis·R J KavlockE H Rogers
May 1, 1980·The American Journal of Psychiatry·G L Engel
May 11, 2000·Western Journal of Nursing Research·L DeSantis, D N Ugarriza
Jan 4, 2003·The Journal of Clinical Investigation·Serge PrzedborskiVernice Jackson-Lewis
Sep 25, 2003·Qualitative Health Research·Margarete Sandelowski, Julie Barroso
Jun 18, 2004·The New England Journal of Medicine·R Sean Morrison, Diane E Meier
Jul 24, 2004·Nature Medicine·Christopher A Ross, Michelle A Poirier
Oct 19, 2004·Journal of Neurology, Neurosurgery, and Psychiatry·A ChiòR Mutani
Jul 13, 2005·Journal of the Neurological Sciences·Nicole BurchardiJochen Vollmann
Jan 31, 2006·Patient Education and Counseling·Rebecca SayRichard Thomson
Feb 24, 2006·International Journal of Palliative Nursing·Judy Ann WollinLinda J Kristjanson
Apr 15, 2006·Palliative Medicine·Peter L HudsonLinda J Kristjanson
May 2, 2006·Journal of Medical Ethics·O D Duncan, L F Parmelee
Nov 2, 2006·International Journal of Palliative Nursing·Linda J KristjansonLynn Oldham
Dec 16, 2006·Qualitative Health Research·Terese Bondas, Elisabeth O C Hall
Mar 14, 2007·Brain Research Bulletin·Sheila A Simpson
Jun 19, 2007·Lancet·J D Mitchell, G D Borasio
Jul 12, 2007·JAMA : the Journal of the American Medical Association·Hiroshi Mitsumoto, Judith G Rabkin
Apr 10, 2008·JAMA : the Journal of the American Medical Association·Camilla ZimmermannIan Tannock
Jul 12, 2008·BMC Medical Research Methodology·James Thomas, Angela Harden
Dec 20, 2008·Movement Disorders : Official Journal of the Movement Disorder Society·Aileen K HoRoger A Barker
Jun 19, 2010·Palliative & Supportive Care·Josée Lemoignan, Carolyn Ells
Feb 1, 2011·Journal of Molecular Cell Biology·Liqin Du, Alexander Pertsemlidis
Feb 8, 2011·Journal of Neurology, Neurosurgery, and Psychiatry·Peter BedeOrla Hardiman
Feb 9, 2011·Sociology of Health & Illness·Patrick R BrownAndy Nordin
Jun 30, 2011·Palliative Medicine·Bridget WhiteheadDouglas Mitchell
Feb 9, 2012·Psychology, Health & Medicine·Francesco TramontiBruno Rossi
Jan 9, 2013·European Journal of Neurology : the Official Journal of the European Federation of Neurological Societies·B YamoutR H Habib
May 1, 2013·PloS One·Michaela PoppeSube Banerjee
Aug 29, 2013·Journal of Neural Transmission·Abhijit Chaudhuri
Dec 18, 2013·Qualitative Health Research·Geraldine FoleyOrla Hardiman
Feb 18, 2014·Journal of Palliative Medicine·Maren GalushkoRaymond Voltz
Jan 1, 2013·Journal of Huntington's Disease·Suzanne J BooijRaymund A C Roos

❮ Previous
Next ❯

Citations

Oct 27, 2020·The Canadian Journal of Neurological Sciences. Le Journal Canadien Des Sciences Neurologiques·Matthew MunanErika MacIntyre
Aug 17, 2021·Journal of Multidisciplinary Healthcare·Denise P CraigMandy Shircore

❮ Previous
Next ❯

Software Mentioned

Academic Search Complete

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.