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Background The second leading cause of death in Italy is cancer. Substantial disparities persist in the level of care and outcomes for cancer patients across various communities, hospitals, and regions in Italy. While substantial progress has been made in medical research and treatment options, these advancements tend to disproportionately benefit the wealthier, better-educated, and more privileged areas and portions of the population. Therefore, the primary aim of the current study is to explore possible reasons for inequalities in access to and utilisation of care from the perspective of cancer patients, who are recipients of these treatments, and healthcare providers, who are responsible for their administration. Methods After being recruited through social media platforms, patients’ organisations, and hospital websites, cancer patients (n = 22) and healthcare providers (n = 16) from various Italian regions participated in online focus group discussions on disparities in access to and provision of care. Video and audio recordings of the interviews were analysed using Thematic analysis. Results Among cancer patients, 7 themes were identified, while 6 themes emerged from the healthcare providers highlighting encountered barriers and unmet needs in cancer care. Most of these emerging themes are common to both groups, such as geographical disparities, information deficiencies, and the importance of psycho-oncological support. However, several themes are specific to each group, for instance, cancer patients highlight the financial burden and the poor interactions with healthcare providers, while healthcare providers emphasise the necessity of establishing a stronger specialists’ network and integrating clinical practice and research. Conclusion Current findings reveal persistent challenges in cancer care, including long waiting lists and regional disparities, highlighting the need for inclusive healthcare strategies. The value of psycho-oncological support is underscored, as well as the potential of the Internet’s use for informational needs, emphasising the imperative for improved awareness and communication to overcome disparities in cancer care.

Background Globally, economically developed countries face similar ageing demographics and the challenge of a ‘care gap’, yet they vary due to different care and formal support systems, and different cultural and societal norms around illness and care. The aim of this exploratory study was to examine cross-country variations in caregiver motivations, willingness, values, meaning in life, illness beliefs, and experiences of wellbeing, gain, health-related quality of life, burden and depression, across 6 European countries and Israel. Cross-country differences in the above-mentioned informal caregiver experiences are rarely described. Methods An online survey (ENTWINE-iCohort) was conducted using validated measures wherever possible. This paper utilises data from 879 caregivers and seven countries (Greece, Italy, the Netherlands, Poland, Sweden, the UK, and Israel). Results No consistent finding supporting the concurrent relationship between caregiver support policies/country culture and caregiver motivations/willingness was found. Caregivers in countries typically characterised by individualist cultures reported lower familism, higher self-enhancement values, and greater perceived illness threat compared to more collectivist countries. Search for meaning was higher in poorer countries than in wealthier countries. Higher negative caregiver experiences (e.g., burden) and lower positive experiences (e.g., wellbeing) were generally observed in countries with underdeveloped caregiver support as compared to countries with more developed formal support systems. Conclusions Cross-country variations can be explained to varying degrees by national policies around care (or their absence) and country cultural contexts. The results emphasise the importance of formal support services for achieving positive caregiver experiences, and help inform the development of policies and measures to support caregivers in Europe and Israel.

Objective: Disparities in cancer care contribute to higher rates of cancer mortality. Online health information would be a resource for cancer patients to obtain knowledge and make health decisions. However, factors that hinder or facilitate online searching behaviours among patients remain unexplored. The current systematic review aims to identify and synthesise evidence of cancer patients’ barriers to and facilitators of online health information-seeking behaviours. Methods: Electronic databases (PubMed, EMBASE, Scopus) were systematically searched, and a total of 123 full-text studies were reviewed of which 24 met the inclusion criteria. Results: Thematic analysis was performed to identify barriers and facilitators of online health information-seeking behaviours. Seven key themes were identified: (1) socio-demographic characteristics (age, gender, education, income, ethnicity and language), (2) psychosocial aspects (psychological wellbeing, need for a face to face contact, motivation, support), (3) accessibility (Internet access, residence), (4) quality and quantity of information (amount, reliability), (5) cancer stage and symptoms (time since diagnosis, experiencing symptoms), (6) aspects related to healthcare professionals (relationship with the patients and opinions on online health information) and (7) digital literacy (computer skills and literacy). Conclusions: Findings underscore the significance of recognising the multifaceted nature of barriers and facilitators affecting cancer patients’ online health information-seeking behaviours. A strong link between these factors and cancer patients’ ability to make informed decisions and cope effectively with their diagnosis emerged. Consequently, addressing these barriers and leveraging the identified facilitators could lead to improvements in patient-centred care, ultimately contributing to better healthcare services and informed decision-making for cancer patients. Future research should prioritise exploring strategies for enhancing cancer care accessibility across all stakeholders involved. Registration CRD42023408091

Informal care is a key pillar of long-term care provision across Europe and will likely play an even greater role in the future. Thus, research that enhances our understanding of caregiving experiences becomes increasingly relevant. The ENTWINE iCohort Study examines the personal, psychological, social, economic, and geographic factors that shape caregiving experiences. Here, we present the baseline cohort of the study and describe its design, recruitment methods, data collection procedures, measures, and early baseline findings. The study was conducted in nine countries: Germany, Greece, Ireland, Israel, Italy, the Netherlands, Poland, Sweden, and the United Kingdom. The study comprised a web-based longitudinal survey (baseline + 6-month follow-up) and optional weekly diary assessments conducted separately with caregivers and care recipients. From 14 August 2020 to 31 August 2021, 1872 caregivers and 402 care recipients were enrolled at baseline. Participants were recruited via Facebook and, to a lesser extent, via the study website or caregiver/patient organisations. Caregiver participants were predominantly female (87%) and primary caregivers (82%), with a median age of 55 years. A large proportion (80%) held at least post-secondary education, and two-thirds were married/partnered. Over half of the caregivers were employed (53%) and caring for a person with multiple chronic conditions (56%), and nearly three-quarters were caring for either a parent (42%) or a spouse/partner (32%). About three-quarters of care recipient participants were female (77%), not employed (74%), and had at least post-secondary education (77%), with a median age of 55 years. Over half of the care recipients were married/partnered (59%), receiving care primarily from their spouses/partners (61%), and diagnosed with multiple chronic conditions (57%). This study examining numerous potential influences on caregiving experiences provides an opportunity to better understand the multidimensional nature of these experiences. Such data could have implications for developing caregiving services and policies, and for future informal care research.

Background Accessing comprehensive oncological data is essential for efficient and quality healthcare delivery and research. However, obstacles, such as data fragmentation and privacy concerns which may hold back progress in this area, exist. The Cancer Care Beacon project addresses these barriers consolidating oncological information across the 27 member states of the European Union (EU) with the goal of creating a Beacon wiki free data online repository. Methods The Cancer Care Beacon project involves thorough data collection from various sources, including hospital websites, PubMed, ClinicalTrials.gov, and national health institutions. The main focus of metadata retrieval is placed on descriptive details about data sources, thus warranting compliance with privacy regulations and ethical standards. In addition, manual examination and semi-automated methods are included in the process, enabling a registry of administrative databases, cancer registries, and other relevant databases. Results Project findings demonstrate the success in the realisation of a comprehensive repository of oncological data sources across the EU assisting informed decision-making regarding the selection and utilisation of resources. Still, challenges such as limited accessibility and low engagement from database providers persist. Conclusion The Beacon Wiki represents a significant step in addressing disparities in oncological data access and advancing cancer care and research in Europe. By providing comprehensive metadata on cancer-related data sources, Beacon Wiki empowers stakeholders and promotes collaboration in cancer care and research. Continuous efforts are needed to enhance data accessibility and engagement from database providers, ultimately improving data-driven decision-making and patient outcomes in the EU. Graphical Abstract

Informal caregivers commonly experience mental health difficulties related to their caregiving role. e-Mental health interventions provide mental health support in a format that may be more accessible to informal caregivers. However, e-mental health interventions are seldom implemented in real-world practice. This mixed methods systematic review aimed to examine factors associated with the effectiveness and implementation of e-mental health interventions for informal caregivers of adults with chronic diseases. To achieve this aim, two approaches were adopted: combinations of implementation and intervention characteristics sufficient for intervention effectiveness were explored using qualitative comparative analysis, and barriers to and facilitators of implementation of e-mental health interventions for informal caregivers were explored using thematic synthesis. We identified relevant studies published from January 1, 2007, to July 6, 2022, by systematically searching 6 electronic databases and various secondary search strategies. Included studies reported on the effectiveness or implementation of e-mental health interventions for informal caregivers of adults with cancer, chronic obstructive pulmonary disease, dementia, diabetes, heart disease, or stroke. Randomized controlled trials reporting on caregivers' mental health outcomes were included in a crisp-set qualitative comparative analysis. We assessed randomized controlled trials for bias using the Risk of Bias 2.0 tool, and we assessed how pragmatic or explanatory their trial design was using the Pragmatic Explanatory Continuum Indicator Summary 2 tool. Studies of any design reporting on implementation were included in a thematic synthesis using the Consolidated Framework for Implementation Research to identify barriers to and facilitators of implementation. Overall, 53 reports, representing 29 interventions, were included in the review. Most interventions (27/29, 93%) focused on informal cancer or dementia caregivers. In total, 14 reports were included in the qualitative comparative analysis, exploring conditions including the presence of peer or professional support and key persuasive design features. Low consistency and coverage prevented the determination of condition sets sufficient for intervention effectiveness. Overall, 44 reports were included in the thematic synthesis, and 152 barriers and facilitators were identified, with the majority related to the intervention and individual characteristic domains of the Consolidated Framework for Implementation Research. Implementation barriers and facilitators in the inner setting (eg, organizational culture) and outer setting (eg, external policies and resources) domains were largely unexplored. e-Mental health interventions for informal caregivers tend to be well-designed, with several barriers to and facilitators of implementation identified related to the intervention and individual user characteristics. Future work should focus on exploring the views of stakeholders involved in implementation to determine barriers to and facilitators of implementing e-mental health interventions for informal caregivers, focusing on inner and outer setting barriers and facilitators. PROSPERO (International Prospective Register of Systematic Reviews) CRD42020155727; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42020155727. RR2-10.1136/bmjopen-2019-035406.

Informal caregivers are those who provide unpaid care to a relative or friend with a chronic illness, disability or other long-lasting health or care need. Providing informal care in the context of chronic health conditions presents a significant global challenge. Examination of the determinants of informal caregivers’ behaviour, especially in terms of motivations and willingness to provide/receive care, is crucial to understanding the nature of caregiver and care recipient experiences. A large group of international researchers have co-operated to execute the ENTWINE iCohort-a multinational, transdisciplinary, longitudinal study incorporating intensive methods to examine caregiver experiences in the context of chronic health conditions. The aim of ENTWINE-iCohort is to investigate the broad spectrum of factors, i.e., cultural, personal, geographical, relational, psychological, and economic that may affect motivations, willingness to provide or receive care, among diverse groups of informal caregivers and their care recipients, in different countries that have different care systems. Study questionnaires will be disseminated on-line in nine countries: Germany, Greece, Ireland, Italy, Israel, the Netherlands, Poland, Sweden, and the UK. Cross-sectional and longitudinal multivariate analysis, including intensive longitudinal and dyadic data analysis will be applied to examine the relative contribution of the above factors to caregiver or care recipient wellbeing.

Background: Many informal caregivers experience mental health difficulties. E-mental health interventions offer effective and accessible mental health support; however, these interventions are often not implemented. To explore implementation of e-mental health interventions for informal caregivers, a systematic review was conducted to (1) examine implementation barriers and facilitators, and (2) identify implementation and intervention features associated with intervention effectiveness. Method: Multiple electronic databases were searched for studies published since 2007 reporting on the implementation and/or effectiveness of e-mental health interventions for informal caregivers of adults with chronic diseases. A thematic synthesis of data related to implementation will be used to identify implementation barriers and facilitators. A qualitative comparative analysis, using data from pragmatic randomized controlled trials, will be used to determine combinations of conditions related to an intervention’s implementation or program features, sufficient for intervention effectiveness. Results: Electronic database searches yielded 9248 unique records to undergo title/abstract screening. The literature screening process is currently underway to identify full-texts eligible for inclusion in the analysis. Preliminary findings will be presented. Implementation barriers and facilitators identified in the thematic synthesis will be presented. These barriers and facilitators will be linked to initial results from the qualitative comparative analysis, as barriers and facilitators may relate to conditions important for intervention effectiveness. Practical applications of these findings will be discussed. If a qualitative comparative analysis cannot be completed prior to the conference, pragmatic trials reporting on intervention effectiveness will be descriptively summarized and analysis plans discussed. Conclusions: This review will identify key factors to consider during implementation of e-mental health interventions for informal caregivers and present potential solutions to overcome implementation barriers. These findings can be used to inform intervention design and implementation strategies to facilitate the implementation of e-mental health services for informal caregivers. Acknowledgements: This work was supported by the European Union’s Horizon 2020 research and innovation program under the Marie-Sklodowska Curie grant agreement No 814072.

Informal care is a key pillar of long-term care provision across Europe and will likely play an even greater role in the future. Thus, research that enhances our understanding of caregiving experiences becomes increasingly relevant. The ENTWINE iCohort Study examines the personal, psychological, social, economic, and geographic factors that shape caregiving experiences. Here, we present the baseline cohort of the study and describe its design, recruitment methods, data collection procedures, measures, and early baseline findings. The study was conducted in nine countries: Germany, Greece, Ireland, Israel, Italy, the Netherlands, Poland, Sweden, and the United Kingdom. The study comprised a web-based longitudinal survey (baseline + 6-month follow-up) and optional weekly diary assessments conducted separately with caregivers and care recipients. From 14 August 2020 to 31 August 2021, 1872 caregivers and 402 care recipients were enrolled at baseline. Participants were recruited via Facebook and, to a lesser extent, via the study website or caregiver/patient organisations. Caregiver participants were predominantly female (87%) and primary caregivers (82%), with a median age of 55 years. A large proportion (80%) held at least post-secondary education, and two-thirds were married/partnered. Over half of the caregivers were employed (53%) and caring for a person with multiple chronic conditions (56%), and nearly three-quarters were caring for either a parent (42%) or a spouse/partner (32%). About three-quarters of care recipient participants were female (77%), not employed (74%), and had at least post-secondary education (77%), with a median age of 55 years. Over half of the care recipients were married/partnered (59%), receiving care primarily from their spouses/partners (61%), and diagnosed with multiple chronic conditions (57%). This study examining numerous potential influences on caregiving experiences provides an opportunity to better understand the multidimensional nature of these experiences. Such data could have implications for developing caregiving services and policies, and for future informal care research.