Zavagli V, Raccichini M, Ercolani G, Franchini L, Varani S, Pannuti R
ANT Foundation, Italy.
Transl Med UniSa. 2019 Jan 6;19:54-59. eCollection 2019 Jan-Jun.
Family caregivers have an essential active role in cancer patients assistance at home. They play a key role in the management of patients and provide some caregiving activities once provided only by professional caregivers. Often they are not adequately trained or prepared, however a systematic assessment of their needs is rarely practiced. For these reasons, this preliminary investigation was designed to better identify the needs and changes in the lifestyles of family caregivers of home cancer palliative care. Participants have completed a battery of self-report questionnaires, including the Caregiving Tasks Consequences and Needs Questionnaire (CaTCoN), that measures caregivers' experiences (the extent of cancer caregiving tasks and consequences) and the caregivers' needs, mainly concerning the interaction with the health care professionals. The results confirmed that cancer caregiving is burdensome. Large proportions of caregivers experienced substantial caregiving workload as well as a range of negative consequences, e.g. lack of time for social relations. Furthermore, considerable proportions of caregivers experienced problems or had unmet needs regarding the interaction with health care professionals. Prominent problematic aspects included the provision of enough information to the caregivers and attention to the caregivers' well-being and feelings. The assessment of caregivers' needs is a critical step for determining appropriate support services, providing high-quality care, achieving caregiver satisfaction, and decreasing caregiver burden. Findings of this investigation will certainly contribute to develop and publish Guidelines and to provide programmes and on-going education where caregivers feel supported in their role.
家庭照顾者在癌症患者的居家护理中发挥着至关重要的积极作用。他们在患者管理中起着关键作用，并承担了一些以往仅由专业照顾者提供的护理活动。然而，他们往往没有得到充分的培训或准备，而且对其需求进行系统评估的情况也很少见。出于这些原因，本次初步调查旨在更好地识别癌症居家姑息治疗家庭照顾者的需求以及生活方式的变化。参与者完成了一系列自我报告问卷，包括《护理任务后果与需求问卷》（CaTCoN），该问卷测量照顾者的经历（癌症护理任务的范围和后果）以及照顾者的需求，主要涉及与医护人员的互动。结果证实，癌症护理负担沉重。很大比例的照顾者经历了大量的护理工作量以及一系列负面后果，例如缺乏社交时间。此外，相当比例的照顾者在与医护人员的互动方面遇到问题或需求未得到满足。突出的问题包括向照顾者提供足够的信息以及关注照顾者的幸福感和感受。评估照顾者的需求是确定适当支持服务、提供高质量护理、实现照顾者满意度以及减轻照顾者负担的关键一步。本次调查的结果必将有助于制定和发布指南，并提供相关项目和持续教育，让照顾者在其角色中感受到支持。
