Caring for people who take care: What is already done?

OBJECTIVE: The growing prevalence and impact of cancer on the family system calls for a palliative care approach with the family as the unit of care. This study aimed at providing an overview of the intervention programs that have been developed to offer support to the family caregivers of oncologic patients receiving palliative care. METHOD: Sixteen articles were included in the final review, encompassing (i) studies focused on intervention programs with family caregivers of cancer patients in palliative care, (ii) studies including a pre- and post-test evaluation of the intervention program, (iii) and studies whose cancer patients were at least 18 years old. RESULTS: A great heterogeneity was verified with respect to care settings, number of sessions, outcome measures, or timing of assessment within the reviewed programs. These findings mirrored the complexity of the palliative care approach, which is difficult to standardize. Nonetheless, some interventions with different features accomplished good and sometimes similar results. The studies' main outcomes were clustered in five categories: psychological symptomatology, general quality of life, caregiving role, family relational variables, and bereavement/grief. Moreover, 44% of the main outcomes were psychological symptomatology of family caregivers, with an emphasis toward anxiety and depression. Also shown was a growing emergence of technology use among these interventions. SIGNIFICANCE OF RESULTS: Results revealed a scarcity of family-oriented programs and lack of certified mental health professionals as interventionists. Future studies and interventions should focus on the positive outcomes of the caregiving experience and must acknowledge the cultural differences when trying to replicate programs. Considering that there is no precise formula for dealing with terminal illness and grief, we submit that family-centered and systemic lenses are excellent approaches for support during this adjustment process. In conclusion, the present study advocates for increased investment in the field, underscoring the importance of family caregivers' mental health.

Support interventions for families of people with terminal cancer in palliative care.

OBJECTIVE: The terminal phase of cancer represents a major crisis for the family system. Regardless of the caregiving role they undertake, family members are forced to address multiple impacts when facing the approaching death of their terminally ill loved one. International guidelines recognize the importance of integrating the family into a care plan. However, more needs to be known about how to deliver optimal family support. The purpose of this study is to review the current state of the art in family/caregiver-focused interventions of people with terminal cancer in palliative care. METHOD: For this purpose, an overview of the literature's systematic reviews on the topic was conducted to select Randomized Controlled Trials (RCTs) on family/caregiver-focused interventions. RESULTS: Nine interventions were found in the systematic reviews of literature and meta-analysis. These family/caregiver-focused interventions were then thoroughly and critically analyzed. Despite the heterogeneity with regard to their characteristics, the interventions commonly focused on caregiving matters, were brief in duration, and delivered by non-mental health experts. The efficacy of such interventions was seen as modest. SIGNIFICANCE OF RESULTS: Family/caregiver-focused interventions in palliative care remain a matter of concern and more research is needed to identify adequate and effective ways of helping families that face the crisis of terminal illness in the system.

Psychological morbidity in family caregivers of people living with terminal cancer: Prevalence and predictors.

OBJECTIVE: The issues surrounding a patient's terminal phase of cancer and the imminent death of the individual represent a major family crisis affecting all its members. The goal of this study was to assess the prevalence of psychological morbidity in family caregivers of persons with terminal cancer in terms of psychological distress, depression, anxiety, somatization, and complicated anticipatory grief, and to determine which factors may influence these responses. METHOD: One hundred and twelve family caregivers of individuals with terminal cancer completed an assessment protocol comprising the Brief Symptom Inventory (depression, anxiety, somatization, and a computed score for global distress), the Marwit-Meuser Caregiver Grief Inventory - Short Form (anticipatory grief), the Family Inventory of Needs (importance and satisfaction of needs), and the Systemic Clinical Outcome Routine Evaluation -15 (family functioning). Prevalence of psychological morbidity was determined through descriptive and frequency statistics. Predictors of psychological morbidity were ascertained through structural equation modelling methods.ResultRegarding the prevalence of psychological morbidity in family caregivers, 66.1% reported high levels of distress, 68.8% showed high risk of depression, 72.3% showed high risk of anxiety, 50.9% reported high levels of somatization, and 25.9% showed high risk of complicated anticipatory grief. It was found that the predictors of age, gender, relationship to the family member with terminal cancer, the caregiving role played (i.e., primary vs. nonprimary), the satisfaction of needs by healthcare professionals, and family functioning play an important role in terms of one's risk of developing psychological morbidity.Significance of resultsThis study revealed an alarming prevalence of psychological morbidity in family caregivers of individuals living with terminal cancer, making it crucial to move forward from a patient-centered approach to a family-centrad approach to reduce the risk of family maladjustment when facing the imminent death of a family member and to prevent postdeath unadjusted responses.

Public perception and preferences for coastal risk management: Evidence from a convergent parallel mixed-methods study.

Coastal ecosystems are exposed to unprecedented levels of human pressure and to the cumulative effects of climate change. Altogether, these threats have been exposing coastal areas to augmented hazardous processes, leaving communities highly vulnerable to coastal risks and challenging the coastal management paradigm. Disregarding public perceptions of coastal risk management may be myopic and, thus, an obstacle to the success of the efforts towards coastal risks' mitigation and adaptation. Therefore, this study aims at comprehensively ascertain public perception and preferences for coastal risk management, through a mixed-methods approach. The quantitative study accounted for 3028 participants that enrolled in the population-based survey. The qualitative study accounted for 320 participants that responded to the e-interview. Data were analysed independently and triangulated for further interpretation. Evidence from this study suggests that citizens prioritize the intrinsic value of coastal systems, when favouring a risk adaptation strategy. Therefore, ecosystem-based adaptation measures were highlighted, in detriment of grey infrastructure. Additionally, and due to the reported high levels of public authorities' distrust, the public seems to urge for a transition from a technocratic to a participatory coastal management, in which public's preferences are legitimized. Consequently, and in order to decentralize coastal governance, citizens demonstrated a proactive disposition to actively engage in coastal management. Findings from this study were discussed in order to provide guidance to the development of tailored coastal management initiatives and policy tools, which are expected to be effective at enhancing coastal communities' resilience to hazardous processes and augmenting citizens' engagement in coastal management.

Environment Actors Confronting a Post Climate-Related Disaster Scenario: A Feasibility Study of an Action-Based Intervention Aiming to Promote Climate Action.

(1) A climate change awareness-action gap still prevails in our society, with individuals showing significant social inertia regarding environmental issues. The communication on climate change is pointed out as one of the causes of the social inertia; (2) Following an action-oriented transformation research, the main goal of this study was to ascertain the feasibility of an action-based communication intervention, based on the participants' exposure to a post climate-related disaster scenario. The feasibility of the action-based communication intervention was assessed in a focus group meeting, whose content was qualitatively analysed; (3) The results of this study demonstrate that action-based communication interventions are feasible to trigger an attitude transformation, catalysed by the experiential processing of climate change and by the affect arousal; (4) This study comes to contribute to a transformation of the climate change communication praxis, by highlighting the urgency to shift the for a new paradigm of communicating climate change, in which the affect and the experiential processing should account for conveying environment-related information in order to promote society's climate action.

A Visual-Analogue Screening Tool for Assessing Mood and Quality of Daily Life Complications in Family Members of People Living With Cancer: Portuguese Version of the Emotion Thermometers: Burden Version.

Cancer is a disease that impacts not only the patient but also affects the entire family. Family members experience high levels of distress. Therefore, screening for cancer-specific distress among family members of people with cancer is important but relatively unexplored. This cross-sectional study aims to analyze the psychometric properties of a screening tool for family members of people with cancer. We examined the usefulness of the emotional thermometers burden version (ET-BV) in detecting caregiver emotional distress. The ET-BV is a simple multidomain visual analogue scale distributed in two major domains: "emotional upset" and "impact." A total of 364 cancer patients' family members completed the ET-BV and Brief Symptom Inventory. Analyses were aimed to examine the diagnostic accuracy (receiver operating characteristic) of the ET-BV. A fair to good diagnostic accuracy was achieved for ET-BV. For emotional upset thermometers, a cutoff of ≥5 was determined and for impact thermometers, a cutoff of ≥4 was established. ET-BV seems to be a useful, quick, and simple tool for distress screening in family members of people with cancer. A revision of a specific thermometer is discussed in order to increase ET screening performance and clinical utility.

The role of media between expert and lay knowledge: A study of Iberian media coverage on climate change.

Individuals play a crucial role in combating climate change, but high levels of acknowledgment and engagement are needed to lead to changes toward more sustainable behaviours. In this aspect, media plays an important role in shaping individuals' awareness about climate change. This study aims to analyse Iberian media coverage about climate change to further discuss its influence on the public's engagement with the subject. A total of 449 news were collected from Iberian newspapers. Their characteristics were analysed through quantitative content analysis. Data shows important journalistic bias toward a national framing, mainly focusing on drought and its impact on agriculture. The debate is focused on technological and political discourses. The gaps found on the Iberian media coverage may contribute to public's low levels of acknowledgement and engagement, not enhancing the possibility of change in individuals' behaviours for more sustainable actions.

Measuring family needs of people living with cancer. Portuguese validation and descriptive studies of the Family Inventory of Needs.

PURPOSE: The aim of this study was to validate the Portuguese version of the Family Inventory of Needs (FIN). The FIN aims to measure important family needs and their fulfilment by a healthcare team. METHODS: This cross-sectional study involved a sample of 364 family members of cancer patients, recruited from three medical institutions and through online recruitment. Three instruments were used: a socio-demographic questionnaire, the FIN and the Brief Symptom Inventory - 18 (BSI-18). Construct validity and reliability were considered regarding the FIN's psychometric properties. The method used to determine construct validity was factor structure analysis (confirmatory factor analysis), inter-factor correlations (Spearman's rank correlation) and convergent validity (Spearman's rank correlation). To assess scale reliability, the FIN's internal consistency was evaluated (Cronbach's alpha coefficient). Descriptive and frequency statistics and tests to compare means were used to assess important needs and to what extent they were met. RESULTS: The four-factor structure of the FIN was confirmed. Thus, the FIN has four domains: Basic Information, Information on treatment and care, Support and Patient Comfort. Convergent validity with the BSI-18 was verified. Both subscales of the FIN and each domain exceeded the minimum reliability standard of 0.70. Family members also reported important needs that were not adequately met by healthcare professionals. CONCLUSIONS: The Portuguese version of the FIN seems to be a reliable and valid tool for identifying cancer patients' important family needs and to what extent these are met.