Identifying the prevalence of unmet supportive care needs among family caregivers of cancer patients: an Italian investigation on home palliative care setting.

PURPOSE: Family caregivers (FCs) are crucial resources in caring for cancer patients at home. The aim of this investigation was (1) to measure the prevalence of unmet needs reported by FCs of cancer patients in home palliative care, and (2) to investigate whether their needs change as their socio-demographic characteristics and the patients' functional abilities change. METHODS: FCs completed a battery of self-report questionnaires, including the Cancer Caregiving Tasks, Consequences, and Needs (CaTCoN). RESULTS: Data were collected from 251 FCs (74 men and 177 women, mean age 58.5 ± 14.2 years). Most of the participants experienced a substantial caregiving workload related to practical help (89.8%), provided some or a lot of personal care (73.1%), and psychological support (67.7%) to patients. More than half of the FCs reported that the patient's disease caused them negative physical effects (62.7%). Emotional, psychosocial, and psychological needs were referred. Some FCs reported that the patient's disease caused them a lot of stress (57.3%) and that they did not have enough time for friends/acquaintances (69.5%) and family (55.7%). The need to see a psychologist also emerged (44.0%). Age, caregiving duration, and patients' functional status correlated with FCs' unmet needs. Women reported more negative social, physical, and psychological consequences and a more frequent need to talk to a psychologist. CONCLUSION: The analysis demonstrated that cancer caregiving is burdensome. The results can guide the development and implementation of tailored programs or support policies so that FCs can provide appropriate care to patients while preserving their own well-being.

Associations between caregiving worries and psychophysical well-being. An investigation on home-cared cancer patients family caregivers.

PURPOSE: Caregiving to a family member with cancer might have health implications. However, limited research has investigated the psychophysical health of home-cared cancer patients family caregivers. In a previous study, we have found that a prolonged worry in daily life is a crucial variable compared to caregivers' psychophysical symptomatology. This investigation was designed to further examine the well-being of family caregivers, explore the domains of worry, and assess to what extent "content-dependent" worry could be associated with the caregivers' health METHODS: The sample consisted of 100 family caregivers of oncological patients assisted at home. Participants completed a battery of self-report questionnaires (Penn State Worry Questionnaire, Worry Domain Questionnaire, Hospital Anxiety and Depression Scale, Family Strain Questionnaire Short Form, and Psychophysiological Questionnaire of the Battery CBA 2.0). RESULTS: The level of worry was medium-high among participants, and caregivers worry more about their occupation and future. Depression, anxiety, and somatic symptomatology levels resulted mild, while strain level resulted high. Statistical analyses confirm the conclusions of the previous study, revealing a significant positive correlation between worry levels and caregivers' psychophysical health. Innovatively, it has been highlighted that who has higher scores of content-dependent worry shows also higher levels of strain, somatic symptoms, anxiety, and depression CONCLUSIONS: Not only trait-worry ("content-free" measure) but also content-dependent worry is associated with strain and negative health outcomes. People may worry about different targets, and it might be useful to further investigate what are the specific worriers of family caregivers in order to promote their physical and emotional well-being.

Worry as a risk factor for mental and somatic diseases. A research on home-cared cancer patients family caregivers.

OBJECTIVE: Cancer patients family caregivers are exposed to several physical and emotional distress. Many recent reviews have provided strong evidence linking negative affective states and dispositions to disease. Moreover, several recent studies suggested that perseverative cognition, as manifested in worry, plays a role in nearly all anxiety disorders and is a crucial factor in somatic health as well. In this study, we tested a group of family caregivers since we wanted to find out whether worry might act directly on psychological and somatic diseases. METHODS: The sample consists of 107 family caregivers. Participants completed a battery of self-report questionnaires including the Caregiver Burden Inventory, the Penn State Worry Questionnaire, the Psychophysiological Questionnaire and the Beck Depression Inventory. They underwent tests at the moment of oncological home-care request. RESULTS: The study has revealed that there is a significant positive correlation between worry measures and mental and physical health of the participants. In fact, the tendency to perseverative cognition resulted as a powerful and solid predictor of physical symptomatology (R = 0.5, beta = 0.67, p < 0.001) and depression level (R = 0.46, beta = 0.52, p < 0.000001). CONCLUSIONS: Worry plays an important role in psychological and physical health and it is a counterproductive attempt at constructive mental problem solving. These results have great practical and operative value. Interventions improving caregiver's ability to cope with stress situations are likely to result in more positive benefits for cancer patients: in fact, if we promote the caregiver's physical and emotional well-being, he or she can provide the best care possible to the patient.

Rethinking palliative care in a public health context: addressing the needs of persons with non-communicable chronic diseases.

Non-communicable chronic diseases (NCCDs) are the main cause of morbidity and mortality globally. Demographic aging has resulted in older populations with more complex healthcare needs. This necessitates a multilevel rethinking of healthcare policies, health education and community support systems with digitalization of technologies playing a central role. The European Innovation Partnership on Active and Healthy Aging (A3) working group focuses on well-being for older adults, with an emphasis on quality of life and healthy aging. A subgroup of A3, including multidisciplinary stakeholders in health care across Europe, focuses on the palliative care (PC) model as a paradigm to be modified to meet the needs of older persons with NCCDs. This development paper delineates the key parameters we identified as critical in creating a public health model of PC directed to the needs of persons with NCCDs. This paradigm shift should affect horizontal components of public health models. Furthermore, our model includes vertical components often neglected, such as nutrition, resilience, well-being and leisure activities. The main enablers identified are information and communication technologies, education and training programs, communities of compassion, twinning activities, promoting research and increasing awareness amongst policymakers. We also identified key 'bottlenecks': inequity of access, insufficient research, inadequate development of advance care planning and a lack of co-creation of relevant technologies and shared decision-making. Rethinking PC within a public health context must focus on developing policies, training and technologies to enhance person-centered quality life for those with NCCD, while ensuring that they and those important to them experience death with dignity.

Creating a Culture of Health in Planning and Implementing Innovative Strategies Addressing Non-communicable Chronic Diseases.

Ongoing demographic changes are challenging health systems worldwide especially in relation to increasing longevity and the resultant rise of non-communicable diseases (NCDs). To meet these challenges, a paradigm shift to a more proactive approach to health promotion, and maintenance is needed. This new paradigm focuses on creating and implementing an ecological model of Culture of Health. The conceptualization of the Culture of Health is defined as one where good health and well-being flourish across geographic, demographic, and social sectors; fostering healthy equitable communities where citizens have the opportunity to make choices and be co-producers of healthy lifestyles. Based on Antonovsky's Salutogenesis model which asserts that the experience of health moves along a continuum across the lifespan, we will identify the key drivers for achieving a Culture of Health. These include mindset/expectations, sense of community, and civic engagement. The present article discusses these drivers and identifies areas where policy and research actions are needed to advance positive change on population health and well-being. We highlight empirical evidence of drivers within the EU guided by the activities within the thematic Action Groups of the European Innovation Partnership on Active and Healthy Aging (EIP on AHA), focusing on Lifespan Health Promotion and Prevention of Age-Related Frailty and Disease (A3 Action Group). We will specifically focus on the effect of Culture on Health, highlighting cross-cutting drivers across domains such as innovations at the individual and community level, and in synergies with business, policy, and research entities. We will present examples of drivers for creating a Culture of Health, the barriers, the remaining gaps, and areas of future research to achieve an inclusive and sustainable asset-based community.

Dyadic co-regulation, affective intensity and infant's development at 12 months: A comparison among extremely preterm and full-term dyads.

Extremely low gestational age children (ELGA, born below 28 weeks of GA) represent the most at-risk preterm group in terms of survival, developmental sequelae and rates of impairment and cognitive delays. However, the impact of an extremely preterm birth on mother-infant co-regulation and affective intensity which may affect early infant's development has not been investigated. Based on a relational dynamic system approach, our study aimed to investigate the quality of co-regulation and affective intensity during spontaneous play interaction in 20 mother-infant ELGA dyads compared to 20 full-term (FT) dyads at 12 months (corrected age for ELGA infants). Relationships between the quality of dyadic co-regulation and the infant's level of cognitive, motor and language development were also investigated. The quality of dyadic co-regulation was assessed using the Revised Relational Coding System (R-RCS) by Fogel et al. (2003), the mothers' and infants' affective intensity was coded using a coding system by Lunkenheimer, Olson, Hollenstein, Sameroff, and Winter (2011). Infants' development was assessed using the Bayley Scales (BSID-III, 2006). With respect to FT dyads, ELGA dyads were characterised by less frequent symmetric and more frequent unilateral co-regulation patterns and by less positive and more neutral affective intensity of both infants and mothers. Cognitive, motor and language scores were lower in ELGA infants than in FT infants. Symmetrical co-regulation was related to motor scores in ELGA infants, and to cognitive scores in FT infants. Our findings contribute to the literature by demonstrating the difficulties of ELGA mother-infant dyads at 12 months in sharing the symmetric co-regulation and positive affective intensity and how symmetric co-regulation is strictly related to motor development in ELGA infants. Based on these findings, intervention programmes to foster joint attention, active involvement and positive affective intensity in ELGA dyads and infants' development in the first year of life should be designed.