The Moral Dimensions of Family Caregiving for Patients with Advanced Cancer: A Qualitative Study

被引:2
作者
Sarradon-Eck, Aline [1 ,2 ]
Mathiot, Aurelia [3 ]
Holmes, Seth M. [2 ,4 ,5 ]
Gilbert, Elise [6 ]
Capodano, Geraldine [7 ]
Proux, Aurelien [7 ]
机构
[1] Aix Marseille Univ, INSERM, IRD, ISSPAM,SESSTIM, Marseille, France
[2] Inst Paoli Calmettes, CanBios UMR 1252, Marseille, France
[3] AP HP Marseille, Marseille, France
[4] ImeRA Mediterranean Inst Adv Study, F-13004 Marseille, France
[5] Univ Calif Berkeley, Berkeley Ctr Social Med, Berkeley, CA USA
[6] Ctr Antoine Lacassagne, Nice, France
[7] Inst Paoli Calmettes, Dept Soins Support & Palliatifs, Marseille, France
关键词
PALLIATIVE CARE; OF-LIFE; PSYCHOLOGICAL DISTRESS; HOME; END; BURDEN; HEALTH; INTERVENTIONS; EXPERIENCE; PEOPLE;
D O I
10.1155/2023/6635542
中图分类号
R73 [肿瘤学];
学科分类号
100214 ;
摘要
Background. Family caregivers in charge of patients with advanced cancer play an essential role. The psychosocial cost of these caregiving activities has been studied, and psychosocial interventions have been developed to improve the quality of life of family caregivers. A deeper understanding of caregivers' burden is essential in order to enhance the benefits of these interventions. The aim of this study was to explore the socioeconomic and cultural factors responsible for shaping the complex personal experience of family caregiving and to analyse the moral dimensions of the caring experience so as to understand its effects on family caregivers more clearly. Materials and Methods. A qualitative study based on in-depth interviews was conducted with patients with advanced cancer (n = 20) and their family caregivers (n = 19) from 2017 to 2020. These interviews were analysed using an inductive approach and an iterative procedure. A thematic analysis was then performed using Tronto's "ethic of care" framework in order to identify the various levels of responsibility and the relationships and effects involved. Results. Providing patients with advanced cancer with informal care is highly valuable work requiring various moral qualities, including attentiveness, responsibility, competence, and responsiveness. The mental load resulting from the moral aspects of care results from the cumulative effects of carers' attentiveness and the responsibilities they have taken on. Conclusion. The present findings could guide healthcare professionals to develop best practice resources and guidelines in order to alleviate the hitherto underestimated effects of caring and promote a coordinated public health approach addressing the needs of caregivers. These efforts are particularly important as contemporary health policies tend to promote the shift from inpatient to outpatient treatment, which increases the importance of informal caregiving and the burden involved.
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页数:9
相关论文
共 69 条
[1]   Caregiver Burden A Clinical Review [J].
Adelman, Ronald D. ;
Tmanova, Lyubov L. ;
Delgado, Diana ;
Dion, Sarah ;
Lachs, Mark S. .
JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION, 2014, 311 (10) :1052-1059
[2]   Palliative Care for Family Caregivers [J].
Alam, Sorayya ;
Hannon, Breffni ;
Zimmermann, Camilla .
JOURNAL OF CLINICAL ONCOLOGY, 2020, 38 (09) :926-+
[3]   Family caregivers voice their needs: A photovoice study [J].
Angelo, Jennifer ;
Egan, Richard .
PALLIATIVE & SUPPORTIVE CARE, 2015, 13 (03) :701-712
[4]   Care for the cancer caregiver: A systematic review [J].
Applebaum, Allison J. ;
Breitbart, William .
PALLIATIVE & SUPPORTIVE CARE, 2013, 11 (03) :231-252
[5]   Support interventions for families of people with terminal cancer in palliative care [J].
Areia, Neide P. ;
Gongora, Jose N. ;
Major, Sofia ;
Oliveira, Vivianne D. ;
Relvas, Ana P. .
PALLIATIVE & SUPPORTIVE CARE, 2020, 18 (05) :580-588
[6]  
Arthur K., 1988, Illness Narratives: Su=ering, Healing, and the Human Condition.
[7]  
Arthur K., 2019, Moral Education of a Husband and a Doctor.
[8]   Informal caregivers of older Muslims diagnosed with cancer: A portrait of depression, social support, and faith [J].
Baider, Lea ;
Goldzweig, Gil ;
Jacobs, Jeremy M. ;
Ghrayeb, Ibtisam M. ;
Sapir, Eli ;
Rottenberg, Yakir .
PALLIATIVE & SUPPORTIVE CARE, 2021, 19 (05) :598-604
[9]   Achieving care and social justice for people with dementia [J].
Barnes, Marian ;
Brannelly, Tula .
NURSING ETHICS, 2008, 15 (03) :384-395
[10]   Impact of caregivers' negative response to cancer on long-term survivors' quality of life [J].
Best, Alicia L. ;
Shukla, Rujuta ;
Adamu, Abdullahi Musa ;
Tyson, Dinorah Martinez ;
Stein, Kevin D. ;
Alcaraz, Kassandra, I .
SUPPORTIVE CARE IN CANCER, 2021, 29 (02) :679-686