Care for carers: an investigation on family caregivers' needs, tasks, and experiences

Abstract

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.