"Imagine You Have ALS": Death Education to Prepare for Advance Treatment Directives.

advance treatment directives amyotrophic lateral sclerosis community death education

Journal

Behavioral sciences (Basel, Switzerland)
ISSN: 2076-328X
Titre abrégé: Behav Sci (Basel)
Pays: Switzerland
ID NLM: 101576826

Informations de publication

Date de publication:
06 Jan 2021
Historique:
received: 25 11 2020
revised: 30 12 2020
accepted: 01 01 2021
entrez: 9 1 2021
pubmed: 10 1 2021
medline: 10 1 2021
Statut: epublish

Résumé

The study presents the results of qualitative research carried out within a death education project dedicated to advance treatment directives (ATDs) in which it was proposed to participants to empathize with people who had received a diagnosis of Amyotrophic Lateral Sclerosis (ALS). The study involved 104 people who discussed and reflected on issues related to the knowledge of having to die, palliative care and ATDs, investigating what choices they would have made if they had received such a diagnosis. Finally, they were asked to write a paper describing their impressions and hypothetical choices. Qualitative analysis has elucidated among fundamental themes. Four thematic areas emerged from the data analysis: (1) ATDs and the family; (2) the importance of reducing pain and suffering; (3) emotions and considerations regarding death, illness and spirituality; and (4) opinions on the DeEd course. It has emerged that some people are unfamiliar with palliative care or the right to self-determination and that addressing these issues helps manage the thought of the future with less terror. The experience of death education has therefore proven to be very positive in dealing with complex and often censored issues, allowing thinking about death in a less distressing way.

Identifiants

pubmed: 33419214
pii: bs11010006
doi: 10.3390/bs11010006
pmc: PMC7825599
pii:
doi:

Types de publication

Journal Article

Langues

eng

Références

Int J Psychol. 2015 Aug;50(4):288-94
pubmed: 25043818
Emerg (Tehran). 2016 Winter;4(1):34-7
pubmed: 26862548
BMC Med Ethics. 2016 Nov 10;17(1):72
pubmed: 27829409
Lancet. 2017 Nov 4;390(10107):2084-2098
pubmed: 28552366
Health Soc Work. 1998 Feb;23(1):35-43
pubmed: 9522202
Palliat Med. 1996 Jan;10(1):35-41
pubmed: 8821186
Funct Neurol. 2016 Jan-Mar;31(1):7-19
pubmed: 27027889
Death Stud. 2020;44(3):179-188
pubmed: 30654717
Gerontologist. 1990 Oct;30(5):583-94
pubmed: 2276631
Omega (Westport). 2019 Jul 31;:30222819863613
pubmed: 31366309
Amyotroph Lateral Scler. 2009 Oct-Dec;10(5-6):448-55
pubmed: 19922139
Front Psychol. 2015 Mar 17;6:288
pubmed: 25852606
PLoS One. 2014 Jun 30;9(6):e101186
pubmed: 24979055
Neurology. 2003 May 13;60(9):1527-9
pubmed: 12743245
Psychooncology. 2003 Jun;12(4):375-84
pubmed: 12748974
Br J Hosp Med (Lond). 2020 Feb 2;81(2):1-6
pubmed: 32097076
Behav Sci (Basel). 2020 Oct 21;10(10):
pubmed: 33096819
Palliat Med. 2012 Jun;26(4):368-78
pubmed: 21712334
Qual Life Res. 2011 May;20(4):569-74
pubmed: 21086185
Palliat Med. 2018 Sep;32(8):1305-1321
pubmed: 29956558
J Pain Symptom Manage. 2017 Mar;53(3):540-550
pubmed: 28042073
Omega (Westport). 2008;57(2):121-41
pubmed: 18680886
Soc Sci Med. 1995 Nov;41(10):1447-62
pubmed: 8560313
Death Stud. 2004 May;28(4):289-308
pubmed: 15129687
J Am Geriatr Soc. 2016 Oct;64(10):2132-2137
pubmed: 27590781
J Pers Soc Psychol. 1994 Oct;67(4):627-37
pubmed: 7965609
Neurology. 1999 Apr 22;52(7):1434-40
pubmed: 10227631
Amyotroph Lateral Scler. 2006 Jun;7(2):86-95
pubmed: 16753972
N Engl J Med. 2001 Feb 22;344(8):605-7
pubmed: 11221623
SAGE Open Med. 2018 May 21;6:2050312118777517
pubmed: 29844911
Omega (Westport). 2015;71(1):60-81
pubmed: 26152027
Clin J Am Soc Nephrol. 2006 Sep;1(5):1023-8
pubmed: 17699322
Behav Sci (Basel). 2020 Jul 07;10(7):
pubmed: 32645853
J Adv Nurs. 2017 Jul;73(7):1632-1645
pubmed: 28072478
Neurology. 2000 Nov 28;55(10):1581-4
pubmed: 11094123
N Engl J Med. 1998 Oct 1;339(14):967-73
pubmed: 9753713
J Neurol Sci. 2007 Jul 15;258(1-2):4-10
pubmed: 17445834
Int J Environ Res Public Health. 2020 Oct 14;17(20):
pubmed: 33066375
Glob Qual Nurs Res. 2016 Dec 19;3:2333393616682549
pubmed: 28462354
Health Psychol Open. 2018 Nov 19;5(2):2055102918809759
pubmed: 30479826
J Neurol Neurosurg Psychiatry. 2010 Apr;81(4):385-90
pubmed: 19710046
Eur J Neurol. 2007 Sep;14(9):993-1001
pubmed: 17718691
Am J Hosp Palliat Care. 2018 Sep;35(9):1161-1167
pubmed: 30071784
Palliat Med. 2018 Jan;32(1):231-245
pubmed: 28671483
J Cancer Educ. 2013 Dec;28(4):790-4
pubmed: 23872951
Neurology. 2007 Mar 20;68(12):923-6
pubmed: 17372127
J Palliat Care. 2010 Winter;26(4):261-9
pubmed: 21268518
Neurologist. 2005 Sep;11(5):257-70
pubmed: 16148733
Lancet. 2011 Mar 12;377(9769):942-55
pubmed: 21296405
J Am Geriatr Soc. 2020 Feb;68(2):305-312
pubmed: 31681981
Neurology. 2013 Feb 19;80(8):764-72
pubmed: 23420894
Palliat Med. 2013 Jan;27(1):5-12
pubmed: 22249925
Amyotroph Lateral Scler. 2011 Mar;12(2):105-8
pubmed: 20653520
Int J Environ Res Public Health. 2020 Apr 01;17(7):
pubmed: 32244681
Front Psychol. 2018 Apr 10;9:441
pubmed: 29692745
Lancet Neurol. 2007 Oct;6(10):913-25
pubmed: 17884681
Patient Educ Couns. 2020 Feb;103(2):286-291
pubmed: 31455567
Psychol Med. 2006 Jun;36(6):865-75
pubmed: 16490122
Am J Hosp Palliat Care. 2018 Jun;35(6):866-874
pubmed: 29186982

Auteurs

Ines Testoni (I)

Department of Philosophy, Sociology, Pedagogy and Applied Psychology (FISPPA), University of Padova, 35131 Padova, Italy.
Emili Sagol Creative Arts Therapies Research Center, University of Haifa, 3498838 Haifa, Israel.

Lorenza Palazzo (L)

Department of Philosophy, Sociology, Pedagogy and Applied Psychology (FISPPA), University of Padova, 35131 Padova, Italy.

Nicoletta Calamarà (N)

Department of Philosophy, Sociology, Pedagogy and Applied Psychology (FISPPA), University of Padova, 35131 Padova, Italy.

Gabriella Rossi (G)

Unione Italiana Lotta alla Distrofia Muscolare (UILDM)-Milano Section, 20124 Milan, Italy.

Michael Alexander Wieser (MA)

Department of Psychology, University of Klagenfurt, 9020 Klagenfurt am Wörthersee, Austria.

Classifications MeSH