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 72 条
[1]  
Ann Marrie Ruth, 2023, Int J MS Care, V25, P20, DOI 10.7224/1537-2073.2021-102
[2]   World Medical Association Declaration of Helsinki Ethical Principles for Medical Research Involving Human Subjects [J].
JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION, 2013, 310 (20) :2191-2194
[3]  
[Anonymous], 2014, RURAL REMOTE HEALTH
[4]   Using Zoom Videoconferencing for Qualitative Data Collection: Perceptions and Experiences of Researchers and Participants [J].
Archibald, Mandy M. ;
Ambagtsheer, Rachel C. ;
Casey, Mavourneen G. ;
Lawless, Michael .
INTERNATIONAL JOURNAL OF QUALITATIVE METHODS, 2019, 18
[5]   Multiple Sclerosis in the Elderly Patient [J].
Awad, Amer ;
Stueve, Olaf .
DRUGS & AGING, 2010, 27 (04) :283-294
[6]  
Beghi E, 2019, LANCET NEUROL, V18, P357, DOI [10.1016/S1474-4422(18)30454-X, 10.1016/S1474-4422(18)30443-5, 10.1016/S1474-4422(19)30034-1]
[7]   Resilience from the Perspectives of Caregivers of Persons with Dementia [J].
Bekhet, Abir K. ;
Avery, Jennifer Sjostedt .
ARCHIVES OF PSYCHIATRIC NURSING, 2018, 32 (01) :19-23
[8]   Resilience amongst Older Colombians Living in Poverty: an Ecological Approach [J].
Bennett, Kate M. ;
Reyes-Rodriguez, Maria F. ;
Altamar, Paula ;
Soulsby, Laura K. .
JOURNAL OF CROSS-CULTURAL GERONTOLOGY, 2016, 31 (04) :385-407
[9]   Sample size for qualitative research [J].
Boddy, Clive Roland .
QUALITATIVE MARKET RESEARCH, 2016, 19 (04) :426-432
[10]   Ambiguous loss: a complicated type of grief when loved ones disappear [J].
Boss, Pauline ;
Yeats, Janet R. .
BEREAVEMENT CARE, 2014, 33 (02) :63-69