The ANT Home Care Model in Palliative and End-of-Life Care. An Investigation on Family Caregivers' Satisfaction with the Services Provided.

The World Health Organization plan for a Decade of Healthy Ageing 2020-2030 has established some priorities in the field of palliative and end-of-life care. It states that "people require non-discriminatory access to good-quality palliative and end-of-life care" and recommends the "implementation of strategies for the provision of information, training, respite and support for informal caregivers". The priorities described are in line with the home care services that National Tumor Assistance (ANT) Foundation has been providing in Italy. This 5-years investigation was designed to measure caregivers' satisfaction and determine what types of support services are associated with greater satisfaction. 5.441 family caregivers filled out autonomously a 6-item questionnaire at the end of home care assistance, focusing on the level of satisfaction with the social and health services received. The overall data indicate a high satisfaction rate for the home care assistance received. In particular, participants rate positively the assistance provided by healthcare professionals (physicians, nurses and psychologists). The most appreciated aspects of assistance are those ensuring a global management of patients and their families, whereas an area of deficiency emerged was the continuity of care, suggesting the importance to implement the networks between the health care facilities and home care services. The present investigation constitutes a mean to highlight the aspects associated with greater satisfaction and the ones perceived as less satisfactory by caregivers. Moreover, this research constitutes a crucial instrument to improve home care assistance provided by ANT ensuring the best quality of life for both patients and their families.

Caregivers in home palliative care: gender, psychological aspects, and patient's functional status as main predictors for their quality of life.

PURPOSE: This study aims to investigate the impact of possible predictors of quality of life (QoL) in a group of Italian caregivers assisting a cancer patient in home palliative care. METHODS: Data from 570 adult informal caregivers and their cancer-affected relatives were collected. A multivariate regression analysis was conducted to assess the effect of three groups of variables on Caregivers Quality of Life Index-Cancer (CQOLC) scale: (a) socio-demographic characteristics of caregivers; (b) psychological characteristics of caregivers assessed by Profile Mood of States (POMS), Caregiver Burden Inventory (CBI), and Preparedness for Caregiving Scale (PCS); (c) Socio-demographic characteristics and functional status of the patients assessed by Karnofsky Performance Status (KPS), Activities of Daily Living (ADL), and Instrumental Activities of Daily Living (IADL). RESULTS: Regression analysis shows that some variables from each of these clusters are significantly associated with CQOLC, in particular: (a) the gender of the caregiver (st.ß = .115, t = 2.765, p = .006) and the time spent for caregiving (st.ß = - .165, t = - 3.960, p < .001); (b) the scores obtained by the caregivers in POMS,CBI (st.ß = - .523, t = - 16.984, p < .001 and st.ß = - .373, t = - 12.950, p < .001, respectively) and PCS (st.ß = .092, t = 3.672, p < .001); (c) the gender (st.ß = - .081, t = - 1.933, p = .045) and the IADL score (st.ß = .195, t = 4.643, p < .001) of the patient. CONCLUSIONS: A multidimensional evaluation is a key strategy to identify the most vulnerable caregivers. Apart from the condition of the patient, the gender of the caregivers, the time spent for caregiving and, above all, their psychological condition are strong predictors of caregivers' QoL.

Care for Carers: an Investigation on Family Caregivers' Needs, Tasks, and Experiences.

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.