A continuum of languishing to flourishing: exploring experiences of psychological resilience in multiple sclerosis family caregivers

被引:5
|
作者
McKenna, Odessa [1 ]
Fakolade, Afolasade [2 ]
Cardwell, Katherine [3 ]
Pilutti, Lara A. [3 ,4 ]
机构
[1] Univ Ottawa, Fac Med, Ottawa, ON, Canada
[2] Queens Univ, Sch Rehabil Therapy, Kingston, ON, Canada
[3] Univ Ottawa, Interdisciplinary Sch Hlth Sci, 200 Lees Ave E250G, Ottawa, ON K1N 6N5, Canada
[4] Univ Ottawa, Brain & Mind Res Inst, Ottawa, ON, Canada
基金
加拿大健康研究院;
关键词
Resilience; family caregivers; multiple sclerosis; interviews; thematic analysis; AMBIGUOUS LOSS; DEMENTIA; PEOPLE; DISEASE; SUPPORT; FRIENDS; BURDEN; LIFE;
D O I
10.1080/17482631.2022.2135480
中图分类号
R1 [预防医学、卫生学];
学科分类号
1004 ; 120402 ;
摘要
Purpose Resilience research in family caregiving in chronic neurological conditions is growing, but multiple sclerosis (MS) caregivers are noticeably absent from this body of work. MS caregivers represent a unique population due to the disease's early onset, prolonged life expectancy, and heterogeneity. As such, this study aimed to explore MS caregivers' conceptualizations of resilience, examine MS caregivers' experiences of resilience development, and determine which assets and resources influence resilience in this role. Methods Twenty-four Canadian MS caregivers were recruited. Semi-structured in-depth interviews were conducted with questions derived from an ecological resilience framework. Data were analysed using reflexive thematic analysis. Results Themes constructed a cyclical resilience model, beginning with encounters with hardship and extending to thriving adjustment. Subthemes included reports of additive challenges, impactful individual and community resources, and multi-level adaptive pathways. Within this cycle, the achievement of healthy adjustment exerted a positive feedback function and informed future responses to lifelong challenges. Conclusions Despite the salience of resilience processes within caregiver testimonies, inadequate resources at societal levels were evident. These findings afford researchers and decision-makers relevant information for designing and implementing resilience-building interventions for MS caregivers that attend to contextual factors and current systemic support deficiencies.
引用
收藏
页数:16
相关论文
共 50 条
  • [1] Experiences of Iranian family caregivers supporting individuals with multiple sclerosis: A qualitative study
    Ebrahimi, Hossein
    Hassankhani, Hadi
    Namdar, Hossein
    Khodadadi, Esmail
    Ferguson, Caleb
    [J]. INTERNATIONAL JOURNAL OF MEDICAL RESEARCH & HEALTH SCIENCES, 2016, 5 (09): : 174 - 182
  • [2] Caregivers of people with multiple sclerosis: experiences of support
    McKeown, LP
    Porter-Armstrong, AP
    Baxter, GD
    [J]. MULTIPLE SCLEROSIS JOURNAL, 2004, 10 (02) : 219 - 230
  • [3] The Experiences of Multiple Sclerosis Patients' Family Caregivers at the First Hospitalization of Their Patients: A Qualitative Study
    Tehranineshat, Banafsheh
    Yektatalab, Shahrzad
    Momennasab, Marzieh
    Bijani, Mostafa
    Mohammadi, Fateme
    [J]. PATIENT PREFERENCE AND ADHERENCE, 2020, 14 : 1159 - 1172
  • [4] PERCEIVED PSYCHOLOGICAL BURDEN OF MULTIPLE SCLEROSIS ON PRIMARY CAREGIVERS
    Assimakopoulos, K.
    Karanasios, P.
    Argyriou, A.
    Iconomou, G.
    Giannakopoulou, F.
    Makris, N.
    [J]. EUROPEAN PSYCHIATRY, 2010, 25
  • [5] Resilience matters in multiple sclerosis: the independent contribution of psychological resilience to disability
    Klineova, S.
    Fabian, M. T.
    Pelle, G.
    Lewis, C.
    Sumowski, J. F.
    [J]. MULTIPLE SCLEROSIS JOURNAL, 2017, 23 : 830 - 830
  • [6] TRAUMA AND AGING: EXPLORING THE EXPERIENCES OF FAMILY CAREGIVERS OF HOLOCAUST SURVIVORS
    Anderson, K. A.
    Fields, N. L.
    [J]. GERONTOLOGIST, 2011, 51 : 142 - 142
  • [7] Family resilience experiences of individuals with schizophrenia-family caregivers dyads: Qualitative study
    Sari, Ayse
    Duman, Zekiye cetinkaya
    [J]. JOURNAL OF PSYCHIATRIC AND MENTAL HEALTH NURSING, 2024,
  • [8] The needs and experiences of caregivers of individuals with multiple sclerosis: a systematic review
    McKeown, LP
    Porter-Armstrong, AP
    Baxter, GD
    [J]. CLINICAL REHABILITATION, 2003, 17 (03) : 234 - 248
  • [9] Psychological Resilience is Linked to Lower Disability in Early Multiple Sclerosis
    Klineova, Sylvia
    Fabian, Michelle
    Pelle, Gabrielle
    Lewis, Christina
    Sumowski, James
    [J]. NEUROLOGY, 2018, 90
  • [10] Psychological Resilience, Metacognitions, and Fear of Recurrence Among Cancer Survivors and Family Caregivers
    Agac, Mehtap
    Uzar-Ozcetin, Yeter Sinem
    [J]. CANCER NURSING, 2022, 45 (02) : E454 - E462