The Lived Experiences of Family Members and Carers of People with Psychosis: A Bottom-Up Review Co-Written by Experts by Experience and Academics.
Carers
Family
Lived experiences
Psychosis
Schizophrenia
Journal
Psychopathology
ISSN: 1423-033X
Titre abrégé: Psychopathology
Pays: Switzerland
ID NLM: 8401537
Informations de publication
Date de publication:
2023
2023
Historique:
received:
08
07
2022
accepted:
20
11
2022
medline:
26
9
2023
pubmed:
24
1
2023
entrez:
23
1
2023
Statut:
ppublish
Résumé
Informal caregivers of individuals affected by psychotic disorder can play a key role in the recovery process. However, little research has been conducted on the lived experiences of carers and family members. We conducted a bottom-up (from lived experience to theory) review of first-person accounts, co-written between academics and experts by experience, to identify key experiential themes. First-person accounts of carers, relatives, and individuals with psychosis were screened and discussed in collaborative workshops involving individuals with lived experiences of psychosis, family members, and carers, representing various organizations. The lived experiences of family members and carers were characterized by experiential themes related to dealing with the unexpected news, the search for a reason behind the disorder, living with difficult and negative emotions, dealing with loss, feeling lost in fragmented healthcare systems, feeling invisible and wanting to be active partners in care, struggling to communicate with the affected person, fighting stigma and isolation, dealing with an uncertain future, and learning from one's mistakes and building resilience and hope. Our findings bring forth the voices of relatives and informal carers of people with psychosis, by highlighting some of the common themes of their lived experiences from the time of the initial diagnosis and throughout the different clinical stages of the disorder. Informal carers are key stakeholders who can play a strategic role, and their contributions in the recovery process merit recognition and active support by mental health professionals.
Identifiants
pubmed: 36689938
pii: 000528513
doi: 10.1159/000528513
pmc: PMC10568611
doi:
Types de publication
Journal Article
Review
Langues
eng
Sous-ensembles de citation
IM
Pagination
371-382Informations de copyright
© 2023 The Author(s). Published by S. Karger AG, Basel.
Références
Schizophr Bull. 1986;12(2):291-2
pubmed: 2872724
Schizophr Bull. 1984;10(3):467-71
pubmed: 6474104
J Egypt Public Health Assoc. 2020 Nov 9;95(1):31
pubmed: 33164132
Schizophr Bull. 1999;25(2):407-9
pubmed: 10416741
Intern Med J. 2019 Mar;49 Suppl 1:9-15
pubmed: 30815980
Br J Clin Psychol. 2017 Jun;56(2):172-188
pubmed: 28397280
Schizophr Bull. 1996;22(3):557-61
pubmed: 8873305
Schizophr Bull. 2018 Oct 17;44(6):1172
pubmed: 28008072
BMC Psychiatry. 2022 May 20;22(1):347
pubmed: 35596170
Schizophr Bull. 1990;16(2):355-9
pubmed: 2374889
Schizophr Bull. 1983;9(3):439-42
pubmed: 6622996
Epidemiol Psychiatr Sci. 2021 Jan 08;30:e3
pubmed: 33416043
Schizophr Bull. 2001;27(4):717-8
pubmed: 11824497
Aust N Z J Psychiatry. 2016 May;50(5):410-72
pubmed: 27106681
Early Interv Psychiatry. 2013 Aug;7(3):291-9
pubmed: 22741743
J Adv Nurs. 2015 Dec;71(12):2753-62
pubmed: 26249710
Schizophr Bull. 2016 May 28;43(5):941-942
pubmed: 27236188
Schizophr Bull. 2019 Aug 23;:
pubmed: 31504963
Schizophr Bull. 1999;25(3):619-21
pubmed: 10478794
J Psychiatr Ment Health Nurs. 2016 Apr;23(3-4):145-55
pubmed: 27029401
Schizophr Bull. 2004;30(1):191-2
pubmed: 15176773
Int J Soc Psychiatry. 2022 May;68(3):600-609
pubmed: 33554710
Front Psychol. 2021 Apr 30;12:676536
pubmed: 33995234
Community Ment Health J. 2015 Jul;51(5):591-7
pubmed: 25690154
Schizophr Bull. 2010 Jan;36(1):94-103
pubmed: 19955388
PLoS One. 2018 Apr 12;13(4):e0195687
pubmed: 29649252
Soc Sci Med. 2005 Jul;61(2):313-22
pubmed: 15893048
Schizophr Bull. 1995;21(1):155-9
pubmed: 7770737
Br J Psychiatry Suppl. 2005 Aug;48:s59-64
pubmed: 16055810
Community Ment Health J. 2022 Apr;58(3):606-617
pubmed: 34245444
Schizophr Bull. 1990;16(4):687-90
pubmed: 2077645
Schizophr Bull. 2015 Mar;41(2):315-7
pubmed: 23873859
Schizophr Bull. 1995;21(2):339-42
pubmed: 7631179
Schizophr Bull. 1994;20(1):227-9
pubmed: 8197417
Schizophr Bull. 1988;14(1):113-6
pubmed: 3387915
Schizophr Bull. 2010 Jul;36(4):651-4
pubmed: 20507876
Schizophr Bull. 1998;24(2):317-8
pubmed: 9613628
J Ment Health. 2017 Apr;26(2):95-97
pubmed: 28355950
Front Psychiatry. 2022 Mar 10;13:824542
pubmed: 35356715
Int J Ment Health Nurs. 2020 Apr;29(2):141-160
pubmed: 31648408
Psychiatr Rehabil J. 2013 Sep;36(3):187-94
pubmed: 23815176
World J Psychiatry. 2012 Jun 22;2(3):43-8
pubmed: 24175167
Lancet Psychiatry. 2019 Jun;6(6):459-461
pubmed: 31003907
Schizophr Bull. 1998;24(1):175-7
pubmed: 9502555
Schizophr Bull. 1985;11(1):155-7
pubmed: 3983576
J Nerv Ment Dis. 2015 May;203(5):379-86
pubmed: 25900547
Schizophr Bull. 1983;9(2):284-6
pubmed: 6867634
Schizophr Bull. 1998;24(3):495-7
pubmed: 9718641
Schizophr Bull. 1991;17(4):689-91
pubmed: 1805358
Br J Psychiatry. 2015 Apr;206(4):268-74
pubmed: 25833867
Schizophr Bull. 2011 Mar;37(2):381-8
pubmed: 19679716
Psychiatr Serv. 2022 Jan 1;73(1):96-99
pubmed: 34281360
BMC Psychiatry. 2015 Aug 29;15:208
pubmed: 26319602
Br J Psychiatry. 2017 Aug;211(2):88-94
pubmed: 28642258
BMC Psychiatry. 2021 Jun 2;21(1):285
pubmed: 34078306
Early Interv Psychiatry. 2017 Jun;11(3):237-243
pubmed: 25721376
PLoS One. 2012;7(3):e31660
pubmed: 22457710
Lancet Psychiatry. 2019 Apr;6(4):305-317
pubmed: 30846354
Schizophr Bull. 2010 Sep;36(5):895-9
pubmed: 20554784
Lancet Public Health. 2019 May;4(5):e229-e244
pubmed: 31054641
Qual Health Res. 2021 Jul;31(9):1697-1709
pubmed: 33749389
Crit Rev Oncol Hematol. 2016 Jan;97:1-14
pubmed: 26633248
BMC Psychiatry. 2014 Jun 09;14:171
pubmed: 24913656
Schizophr Bull. 1999;25(1):183-6
pubmed: 10098921
Br J Psychiatry. 2015 Aug;207(2):135-42
pubmed: 25999336
BMJ Open. 2019 Dec 30;9(12):e032391
pubmed: 31892656
Schizophr Bull. 1990;16(3):547-9
pubmed: 2287939
Lancet Psychiatry. 2022 Mar;9(3):211-221
pubmed: 35093198
Soc Psychiatry Psychiatr Epidemiol. 2022 Sep;57(9):1749-1769
pubmed: 35699742
Schizophr Bull. 2003;29(4):877-9
pubmed: 14989422
Schizophr Bull. 1991;17(3):539-45
pubmed: 1947877
Can J Psychiatry. 2017 Sep;62(9):617-623
pubmed: 28703017
Can J Psychiatry. 2014 Jul;59(7):376-84
pubmed: 25007421
Epidemiol Psychiatr Sci. 2017 Jun;26(3):265-275
pubmed: 26847994
Early Interv Psychiatry. 2009 Sep;3 Suppl 1:S22-6
pubmed: 21352193
Schizophr Bull. 2001;27(2):329-32
pubmed: 11354599
World Psychiatry. 2021 Jun;20(2):200-221
pubmed: 34002494
Schizophr Bull. 2016 Mar;42(2):262-3
pubmed: 25669850
Schizophr Bull. 2000;26(4):933-8
pubmed: 11087025
World Psychiatry. 2022 Jun;21(2):168-188
pubmed: 35524616
Gen Psychiatr. 2022 Mar 12;35(2):e100784
pubmed: 35372788
Br J Psychiatry. 2010 Apr;196(4):259-65
pubmed: 20357299
Mol Psychiatry. 2022 Jan;27(1):281-295
pubmed: 34079068
Schizophr Bull. 2010 Jan;36(1):3-8
pubmed: 19561059
Schizophr Bull. 2007 Jul;33(4):846-7
pubmed: 16707776
Schizophr Bull. 1996;22(1):183-5
pubmed: 8685660
Clin Psychol Psychother. 2020 Nov;27(6):965-976
pubmed: 32474978
Soc Psychiatry Psychiatr Epidemiol. 2014 Jul;49(7):1071-81
pubmed: 24448630
Arch Psychiatr Nurs. 2016 Dec;30(6):768-773
pubmed: 27888973
BMC Psychiatry. 2017 Mar 21;17(1):101
pubmed: 28320376
Schizophr Res. 2005 Dec 15;80(2-3):227-34
pubmed: 15964175
BMC Fam Pract. 2016 Aug 20;17(1):115
pubmed: 27542353
J Affect Disord Rep. 2021 Dec;6:100239
pubmed: 34557862