AUSL di Bologna, Bologna, Italia.
IRCCS Istituto delle Scienze Neurologiche di Bologna, Bologna, Italia.
PLoS One. 2023 Apr 17;18(4):e0265297. doi: 10.1371/journal.pone.0265297. eCollection 2023.
Caregivers of people with Multiple Sclerosis are required to provide ongoing assistance especially during the advanced stages of the disease. They have to manage interventions and assume responsibilities which significantly impact both their personal quality of life and family's dynamics.
A qualitative phenomenological study was carried out to understand the experience of burden in caregivers and their resources to manage it. The study also explores how healthcare services involved in the Multiple Sclerosis Clinical Pathway respond to the needs of well-being of patients and family members.
17 caregivers were involved in focus groups and in semi-structured individual interviews.
Fatigue is experienced by all respondents and it starts when physical disabilities increase or when people become aware of them. Many caregivers declare that they refer to intrinsic (love towards their relatives, patience and dedication) or extrinsic (family members, hobbies) resources to cope with the burden of assistance. Patient associations and the Multiple Sclerosis Clinical Pathway play a significant role in supporting caregivers.
Fatigue, loneliness, and isolation are experienced by caregivers and strongly affect their quality of life and health status. The study highlights caregivers' need to reconcile working times with care times, to give more space to self-care and to have moments to share their experiences with someone else. These needs should be at the core of health policies in order to avoid physical and emotional breakdowns which could lead to the rupture of the relational balance on which home care is based.
多发性硬化症患者的护理人员需要提供持续的帮助，特别是在疾病的晚期。他们必须管理干预措施并承担责任，这对他们的个人生活质量和家庭动态都有重大影响。
进行了一项定性现象学研究，以了解护理人员的负担体验及其管理负担的资源。该研究还探讨了参与多发性硬化症临床路径的医疗保健服务如何满足患者和家庭成员的幸福感需求。
17 名护理人员参与了焦点小组和半结构化的个人访谈。
所有受访者都经历了疲劳，当身体残疾增加或人们意识到身体残疾时，疲劳就开始了。许多护理人员表示，他们依靠内在（对亲属的爱、耐心和奉献精神）或外在（家庭成员、爱好）资源来应对援助的负担。患者协会和多发性硬化症临床路径在支持护理人员方面发挥了重要作用。
疲劳、孤独和孤立是护理人员经历的，强烈影响他们的生活质量和健康状况。该研究强调了护理人员需要协调工作时间和照顾时间，为自我照顾留出更多空间，并与他人分享他们的经验。这些需求应该是卫生政策的核心，以避免身体和情绪崩溃，这可能导致基于家庭护理的关系平衡破裂。
