Intertwined like a double helix: A meta-synthesis of the qualitative literature examining the experiences of living with someone with multiple sclerosis.
care
chronic illness
lived experience
multiple sclerosis
personhood
qualitative
Journal
Health expectations : an international journal of public participation in health care and health policy
ISSN: 1369-7625
Titre abrégé: Health Expect
Pays: England
ID NLM: 9815926
Informations de publication
Date de publication:
06 2022
06 2022
Historique:
revised:
16
11
2021
received:
08
09
2021
accepted:
31
12
2021
pubmed:
5
2
2022
medline:
25
5
2022
entrez:
4
2
2022
Statut:
ppublish
Résumé
Multiple sclerosis (MS) is a chronic serious condition of uncertain course and outcome. There is relatively little literature on the experiences of people who live with a person with MS. They inhabit a locus of care that spans caring for (a relational act) and caring about (a moral stance, addressing fairness, compassion and justice) the person with MS. Using the theoretical lens of personhood, we undertook a scoping review and meta-synthesis of the qualitative literature on the experiences of people who live with a person with MS, focusing on the nature of, and constraints upon, caring. Of 330 articles, 49 were included in the review. We identified five themes. One of these-seeking information and support-reflects the political economy of care. Two are concerned with the moral domain of care: caring as labour and living with uncertainty. The final two themes-changing identities and adapting to life with a person with MS-point to the negotiation and reconstitution of personhood for both the person with MS and the people they live with. People with MS are embedded in relational social networks of partners, family and friends, which are fundamental in the support of their personhood; the people who live with them are 'co-constituents of the patient's identity' assisting them to make sense of their world and self in times of disruption due to illness. Support services and health care professionals caring for people with MS are currently very much patient-centred; young people in particular report that their roles are elided in the health system's interaction with a parent with MS. There is a need to look beyond the person with MS and recognize the relational network of people who surround them and broaden their focus to encompass this network. Our research team includes four members with MS and two members with lived experience of living or working with people with MS. A third person (not a team member) who lives with a partner with MS provided feedback on the paper.
Sections du résumé
BACKGROUND
Multiple sclerosis (MS) is a chronic serious condition of uncertain course and outcome. There is relatively little literature on the experiences of people who live with a person with MS. They inhabit a locus of care that spans caring for (a relational act) and caring about (a moral stance, addressing fairness, compassion and justice) the person with MS.
METHODS
Using the theoretical lens of personhood, we undertook a scoping review and meta-synthesis of the qualitative literature on the experiences of people who live with a person with MS, focusing on the nature of, and constraints upon, caring.
RESULTS
Of 330 articles, 49 were included in the review. We identified five themes. One of these-seeking information and support-reflects the political economy of care. Two are concerned with the moral domain of care: caring as labour and living with uncertainty. The final two themes-changing identities and adapting to life with a person with MS-point to the negotiation and reconstitution of personhood for both the person with MS and the people they live with.
CONCLUSION
People with MS are embedded in relational social networks of partners, family and friends, which are fundamental in the support of their personhood; the people who live with them are 'co-constituents of the patient's identity' assisting them to make sense of their world and self in times of disruption due to illness. Support services and health care professionals caring for people with MS are currently very much patient-centred; young people in particular report that their roles are elided in the health system's interaction with a parent with MS. There is a need to look beyond the person with MS and recognize the relational network of people who surround them and broaden their focus to encompass this network.
PATIENT AND PUBLIC INVOLVEMENT
Our research team includes four members with MS and two members with lived experience of living or working with people with MS. A third person (not a team member) who lives with a partner with MS provided feedback on the paper.
Identifiants
pubmed: 35118764
doi: 10.1111/hex.13432
pmc: PMC9122458
doi:
Types de publication
Journal Article
Meta-Analysis
Review
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
803-822Informations de copyright
© 2022 The Authors. Health Expectations published by John Wiley & Sons Ltd.
Références
Front Psychol. 2018 Jan 31;9:15
pubmed: 29445346
J R Soc Med. 2013 Oct;106(10):399-407
pubmed: 23759884
J Med Ethics. 2017 Sep;43(9):637-644
pubmed: 28356489
N Engl J Med. 2018 Jan 11;378(2):169-180
pubmed: 29320652
Arch Dis Child. 2015 Jul;100(7):623-9
pubmed: 25552262
EPMA J. 2019 Nov 22;10(4):425-436
pubmed: 31832116
Lancet Neurol. 2019 Mar;18(3):269-285
pubmed: 30679040
Qual Health Res. 2020 Apr;30(5):717-729
pubmed: 31994448
Mult Scler. 2010 Jul;16(7):878-82
pubmed: 20483882
Br J Health Psychol. 2021 May;26(2):360-384
pubmed: 33128428
Health Expect. 2018 Feb;21(1):181-191
pubmed: 28722772
J Child Neurol. 2019 Jul;34(8):464-471
pubmed: 31012369
Disabil Rehabil. 2021 Jan;43(1):76-84
pubmed: 31131646
Autoimmun Rev. 2011 Jun;10(8):495-502
pubmed: 21354338
Sociol Health Illn. 2005 Apr;27(3):372-92
pubmed: 15953213
Eur J Paediatr Neurol. 2016 Nov;20(6):938-945
pubmed: 27422092
Neurology. 2014 Sep 9;83(11):1022-4
pubmed: 25200713
Lancet. 2018 Apr 21;391(10130):1622-1636
pubmed: 29576504
J Clin Nurs. 2018 Jan;27(1-2):22-30
pubmed: 28231630
PLoS One. 2014 Oct 06;9(10):e109679
pubmed: 25286321
Mult Scler. 2007 Jun;13(5):660-7
pubmed: 17548447
NeuroRehabilitation. 2016 Mar 23;38(3):257-70
pubmed: 27030902
Iran J Nurs Midwifery Res. 2017 May-Jun;22(3):243-247
pubmed: 28706551
Disabil Rehabil. 2020 Apr;42(7):940-947
pubmed: 30299167
Disabil Rehabil. 2012;34(16):1367-75
pubmed: 22256892
Health Expect. 2020 Oct;23(5):1007-1027
pubmed: 32578287
Sociol Health Illn. 2019 Feb;41(2):395-410
pubmed: 30677163
Can J Occup Ther. 2008 Jun;75(3):149-56
pubmed: 18615926
Health Aff (Millwood). 2014 Sep;33(9):1689-92
pubmed: 25201673
J Adv Nurs. 2004 Sep;47(5):475-82
pubmed: 15312110
PLoS One. 2019 Feb 28;14(2):e0212422
pubmed: 30817765
Mult Scler Int. 2017;2017:9243161
pubmed: 29082042
Mult Scler Relat Disord. 2013 Apr;2(2):96-102
pubmed: 25877630
Scand J Caring Sci. 2018 Dec;32(4):1262-1278
pubmed: 30144143
Cancer. 2009 Nov 15;115(22):5237-42
pubmed: 19645027
Am J Occup Ther. 2006 May-Jun;60(3):348-58
pubmed: 16776403
Scand J Caring Sci. 2014 Mar;28(1):38-48
pubmed: 23550661
BMC Neurol. 2019 Oct 25;19(1):250
pubmed: 31653233
Adapt Phys Activ Q. 2012 Jul;29(3):205-23
pubmed: 22811563
Br J Health Psychol. 2011 May;16(Pt 2):430-44
pubmed: 21489068
Mult Scler. 2004 Apr;10(2):219-30
pubmed: 15124770
Br J Nurs. 2010 Feb 25-Mar 10;19(4):214-9
pubmed: 20220670
Chronic Illn. 2017 Jun;13(2):88-99
pubmed: 27539955
J Clin Nurs. 2017 May;26(9-10):1363-1374
pubmed: 27648554
Qual Health Res. 2004 Feb;14(2):153-66
pubmed: 14768455
Int J Environ Res Public Health. 2020 Dec 24;18(1):
pubmed: 33374429
BMC Med Res Methodol. 2008 Jul 10;8:45
pubmed: 18616818
J Neurosci Nurs. 2010 Dec;42(6):331-41
pubmed: 21207771
Sociol Health Illn. 2019 Feb;41(2):205-218
pubmed: 30353551
J Neurol. 2017 Jul;264(7):1354-1361
pubmed: 28550483
Int J Nurs Stud. 2019 Apr;92:79-89
pubmed: 30743199
Health Soc Care Community. 2019 Nov;27(6):1515-1524
pubmed: 31368624
J Nurs Scholarsh. 2016 Sep;48(5):482-9
pubmed: 27391528
J Clin Nurs. 2016 Apr;25(7-8):1053-61
pubmed: 26868176
Am Ethnol. 2013 Nov 1;40(4):637-650
pubmed: 26401062
Implement Sci. 2010 Sep 20;5:69
pubmed: 20854677
J Neurosci Nurs. 2005 Feb;37(1):20-7
pubmed: 15794441
Patient Prefer Adherence. 2021 Jan 08;15:15-27
pubmed: 33447018
Mult Scler. 2009 Jul;15(7):876-84
pubmed: 19168601
Int J Gen Med. 2013 Sep 18;6:787-98
pubmed: 24092994
Appl Nurs Res. 2017 Apr;34:1-6
pubmed: 28342617
J Clin Nurs. 2016 Mar;25(5-6):856-65
pubmed: 26762177
Iran J Nurs Midwifery Res. 2014 Jul;19(4):416-23
pubmed: 25183985
Int J MS Care. 2015 Jan-Feb;17(1):42-8
pubmed: 25741226
J Adv Nurs. 2015 Dec;71(12):2811-21
pubmed: 26337059
BMC Public Health. 2019 Apr 23;19(1):422
pubmed: 31014309
BMJ Open. 2015 Jul 22;5(7):e007674
pubmed: 26201723
J Neurol Neurosurg Psychiatry. 2018 Aug;89(8):844-850
pubmed: 29618493
Soc Sci Med. 2013 Nov;96:78-85
pubmed: 24034954
Patient Prefer Adherence. 2020 Jul 13;14:1159-1172
pubmed: 32764889
Health Expect. 2022 Jun;25(3):803-822
pubmed: 35118764
Lancet Neurol. 2019 Nov;18(11):981
pubmed: 31609205
Health Informatics J. 2016 Dec;22(4):1045-1054
pubmed: 26460102
Mult Scler Relat Disord. 2018 Aug;24:145-150
pubmed: 30007180