Addressing disparities in European cancer outcomes: a qualitative study Protocol of the BEACON project.

Introduction: Health disparities represent a crucial factor in cancer survival rates, awareness, quality of life, and mental health of people receiving a cancer diagnosis and their families. Income, education, geographic location, and ethnicity are some of the most important underlying reasons for health disparities in cancer across Europe. Costs of healthcare, access to information, psycho-oncological support options, integration of cancer research and innovative care, and multidisciplinary cancer teams are the main target areas when it comes to addressing disparities in the cancer context. As part of the Beacon Project (BEACON), we developed a protocol for a qualitative study to explore and identify any relevant reasons for cancer inequalities and disparities in Europe. Methods: Our four stakeholders namely, cancer patients, healthcare providers, researchers, and policymakers will be recruited online, facilitated by collaborative efforts with cancer organizations from various European countries, including but not limited to Italy, Croatia, Estonia, and Slovenia. Qualitative online focus group discussions for each stakeholder will be conducted and transcribed. Subsequently, thematic analysis will be used to identify reasons and aspects that may contribute to the existing disparities in cancer outcomes at various levels of engagement and from different stakeholders' perspectives. Results from focus groups will inform a subsequent Delphi study and a SWOT analysis methodology. Discussion: Although advances in medical research, cancer screening and treatment options are constantly progressing, disparities in access to and awareness of healthcare in cancer patients are even more noticeable. Thus, mapping the capacity and capability of cancer centres in the European Union, creating decision support tools that will assist the four stakeholders' information needs and improving the quality of European cancer centres will be the main objectives of the BEACON project. The current protocol will outline the methodological and practical procedures to conduct online focus group discussions with different stakeholders.

Cross-country variations in the caregiver role: evidence from the ENTWINE-iCohort study.

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.

The associations of dyadic coping strategies with caregiver's willingness to care and burden: A weekly diary study.

This weekly diary study investigated associations of weekly dyadic coping strategies with caregivers' willingness to care and burden. Multilevel modelling was applied to assess between- and within-person associations for 24 consecutive weeks in 955 caregivers. Greater willingness to care was reported in weeks when caregivers used more collaborative (b = 0.26, p < 0.001) and supportive (b = 0.30, p < 0.001) strategies, whereas uninvolved coping was associated with lower willingness to care (b = -0.44, p < 0.001). Using collaborative coping strategies was associated with lower weekly burden (b = -0.13, p < 0.001). A greater burden was reported in weeks when caregivers used more uninvolved (b = 0.19, p < 0.001) and controlling (b = 0.13, p < 0.001) coping strategies. A full understanding of whether caregivers' willingness to care and burden may be improved owing to weekly dyadic coping is essential for developing timely support for caregivers.

Cohort profile: The ENTWINE iCohort study, a multinational longitudinal web-based study of informal care.

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.

Barriers to and facilitators of online health information-seeking behaviours among cancer patients: A systematic review.

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.

Disparities and barriers in the assessment of psychological distress, access to and use of psycho-oncological support in Europe: current perspectives.

The implementation of psycho-oncological support has shown important results in positively influencing treatment outcomes and quality of life in cancer patients and survivors. In the last few decades, the importance of mental health has been brought to attention to the general public and healthcare professionals on a national, institutional and organisational level. Official guidelines, policies, and training programs have been developed suggesting that psycho-oncological support should be considered as a non-negotiable requirement for quality cancer care in many hospitals and clinical centres across Europe. Health organisations, associations, institutions, and societies, such as the International Psycho-Oncology Society (IPOS) and the European Partnership for Action Against Cancer (EPAAC), are forming alliances, funding research projects and organising congresses in order to study, understand, and discuss the reasons for barriers and disparities in psycho-oncological support and, eventually, to overcome the existing cancer divide. Nevertheless, the World Health Organization's (WHO) estimations indicate that the cancer burden is still increasing, and relevant barriers and disparities in accessing psycho-oncological support continue to exist and influence the health conditions and quality of life of cancer patients and survivors. The present work will present the current disparities and barriers regarding assessment, access to and use of psycho-oncological support in the countries of the European Union, making suggestions for further research and possible solutions.

Does willingness to care fluctuate over time? A weekly diary study among informal caregivers.

OBJECTIVE: Informal caregivers are expected to be willing to care for relatives with care needs. Little is known about whether and how willingness to care changes over time. Using a weekly diary study, we examined changes in the willingness of 955 caregivers from nine countries. Caregivers provided information on their caregiving context, relationship type, and relationship satisfaction with the care recipient. METHODS AND MEASURES: For 24 consecutive weeks, caregivers evaluated willingness to care as it was 'right now'. RESULTS: Willingness differs from one caregiver to another (68% between-level variability) but also fluctuates in the same caregiver from week to week (32% within-level variability), with a decrease over 6 months (intercept = 8.55; slope = -0.93; p < .001). Regardless of individual differences in average willingness to care based on caregiving context and relationship satisfaction, caregivers reported decreases in willingness. Caregivers who presented one or more health conditions themselves reported higher weekly fluctuations in willingness than caregivers with no health conditions. CONCLUSION: Willingness is not a stable attitude because it decreases and caregivers experience fluctuations from week to week. A clearer understanding of weekly processes is optimal for monitoring the caregivers' well-being and tailoring interventions in line with weekly individual variations.

Issues and opportunities of digital phenotyping: ecological momentary assessment and behavioral sensing in protecting the young from suicide.

Digital phenotyping refers to the collection of real-time biometric and personal data on digital tools, mainly smartphones, and wearables, to measure behaviors and variables that can be used as a proxy for complex psychophysiological conditions. Digital phenotyping might be used for diagnosis, clinical assessment, predicting changes and trajectories in psychological clinical conditions, and delivering tailored interventions according to individual real-time data. Recent works pointed out the possibility of using such an approach in the field of suicide risk in high-suicide-risk patients. Among the possible targets of such interventions, adolescence might be a population of interest, since they display higher odds of committing suicide and impulsive behaviors. The present work systematizes the available evidence of the data that might be used for digital phenotyping in the field of adolescent suicide and provides insight into possible personalized approaches for monitoring and treating suicidal risk or predicting risk trajectories. Specifically, the authors first define the field of digital phenotyping and its features, secondly, they organize the available literature to gather all the digital indexes (active and passive data) that can provide reliable information on the increase in the suicidal odds, lastly, they discuss the challenges and future directions of such an approach, together with its ethical implications.

Implementation of e-Mental Health Interventions for Informal Caregivers of Adults With Chronic Diseases: Mixed Methods Systematic Review With a Qualitative Comparative Analysis and Thematic Synthesis.

BACKGROUND: 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. OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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. TRIAL REGISTRATION: PROSPERO (International Prospective Register of Systematic Reviews) CRD42020155727; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42020155727. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2019-035406.

Dyadic associations between perceived social support and psychological well-being in caregivers and older care recipients.

Caregiving can be burdensome for both family caregivers and older care recipients (i.e., adults 75 years or older with care needs). This study aimed to determine dyadic associations between caregivers' and care recipients' perceived social support from others (e.g., family and friends) and psychological well-being as a dyad. Caregivers and care recipients (N = 215 dyads) in this cross-sectional study were recruited by pensioner trade unions in Italy. Both members of the dyad completed the World Health Organization-Five Well-Being Index (WHO-5). Social support was measured with the Carers of Older People in Europe Index for caregivers and the Oslo-3 Scale for care recipients. Dyadic data were analyzed with the actor-partner interdependence model. Caregivers' and care recipients' well-being was moderately correlated (r = 0.41, p < .01), with care recipients reporting significant lower well-being (MCR = 30.95 vs. MCG = 46.45). Social support perceived by the caregivers was positively associated with their own well-being (actor effect; ß = 3.31, p < .001) and with the care recipients' well-being (partner effect; ß = 0.58, p < .001). No significant care recipient actor and partner effects were detected. This study provided evidence on crossover effects between social support and well-being in caregiving dyads. Findings have implications for research and clinical practice in familial aged care. Family interventions targeted at the caregivers' broader social environment might enhance both dyad members' well-being. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Dyadic Interdependence in Non-spousal Caregiving Dyads' Wellbeing: A Systematic Review.

Caregiving dyads (i.e., an informal caregiver and a care recipient) work as an interdependent emotional system, whereby it is assumed that what happens to one member of the dyad essentially happens to the other. For example, both members of the dyad are involved in care giving and care receiving experiences and therefore major life events, such as a serious illness affect the dyad and not only the individual. Consequently, informal caregiving may be considered an example of dyadic interdependence, which is "the process by which interacting people influence one another's experience." This systematic review aimed to synthesize studies of dyadic interdependence, specifically in non-spousal caregiving dyads (e.g., adult children-parents, siblings, other relatives, or friends). Electronic databases (PsycINFO, Pubmed, and CINAHL) were systematically searched for dyadic studies reporting on interdependence in the emotional and relational wellbeing of non-spousal caregiving dyads. A total of 239 full-text studies were reviewed, of which 14 quantitative and qualitative studies met the inclusion criteria with a majority of dyads consisting of adult daughters caring for their older mothers. A narrative synthesis suggested mutual influences between non-spousal caregiving dyad members based on: (1) associations between intrapersonal (e.g., psychological functioning) and interpersonal (e.g., relationship processes) variables and emotional and relational wellbeing of the dyad; (2) associations between care context variables (e.g., socio-demographics and care tasks) and emotional and relational wellbeing of the dyad; and (3) patterns of covariation between caregivers' and care recipients' wellbeing. Evidence supporting dyadic interdependence among non-spousal caregiving dyads shed light on the ways dyad members influence each other's wellbeing while providing and receiving care (e.g., via the exchange of support). Future studies investigating mutual influences in dyads, should differentiate subsamples of caregivers based on relationship type, and adopt dyadic and longitudinal designs. Systematic Review Registration: [https://www.crd.york.ac.uk/prospero/#recordDetails], identifier [CRD42021213147].

Exploring the Needs of Spousal, Adult Child, and Adult Sibling Informal Caregivers: A Mixed-Method Systematic Review.

Informal caregivers (ICGs) provide care to their family or friends in case of an illness, disability, or frailty. The caregiving situation of informal caregivers may vary based on the relationship they have with the care recipient (CR), e.g., being a spouse or being an adult child. It might be that these different ICGs also have different needs. This study aims to explore and compare the needs of different groups of ICGs based on the relationship they have with their CR. We conducted a systematic review, performing a search in the databases PubMed, CINAHL, and PsycINFO. We included studies with qualitative, quantitative, or mixed-method study designs. We analyzed the data using the thematic analysis method. We included 22 articles (18 qualitative; 4 quantitative). The included articles reported the needs of ICGs taking care of a spouse (spousal ICGs), parent (adult child ICG), or sibling aged 18 years or above (adult sibling ICGs). We did not include other relationships due to the limited number of articles on these relationships. The most prominent needs reported by the spousal, adult child, and adult sibling ICGs were the need for information and need for support. The three groups differed in their needs as well. Adult child and adult sibling ICGs indicated a need to be acknowledged by the people around them for their role of carer, while they also needed to be seen as an individual having their own personal needs. Moreover, spousal ICGs indicated a unique need of redefining their role and relationship with their CR. Overall, the findings indicate that along with experiencing common needs, the investigated groups have unique needs as well. Knowing the needs of different groups of ICGs can help develop tailored solutions to improve the quality of life of the ICGs and their CR. Systematic Review Registration: [www.crd.york.ac.uk/prospero/], identifier [CRD42020188560].

Dyadic Profiles of Couples Coping With Body Image Concerns After Breast Cancer: Preliminary Results of a Cluster Analysis.

Breast cancer treatments have multiple adverse effects, including concerns about body appearance and function that are experienced by most patients. Altered body image negatively affects mental health, social, and relationship functioning. While the relationship with a partner is critical for patients' psychological wellbeing and partners can promote positive body image, limited research has investigated individual and relational factors affecting the experience of both. This cross-sectional study aimed at (1) exploring rates of body image concerns among breast cancer patients, and (2) identifying dyadic profiles among participating dyads. Couples composed by patients who had undergone surgery and their romantic partners (n = 32) were recruited from the Breast Unit of a hospital in northern Italy. Both partners completed measures of personality characteristics (BFQ-2), psychological distress (HADS), coping flexibility (PACT), dyadic coping (DCQ), and closeness (IOS). Body image (BIS) and adjustment to cancer (Mini-MAC) measures were completed by patients only. K-mean cluster analyses identified 2-cluster solution among patients and partners, respectively. "Active patients" (cluster-1) reported low rates of body image concerns (p < 0.001), anxious preoccupation, negative dyadic coping, and self-oriented stress communication (p < 0.05), compared to "worried patients" (cluster-2). "Comfortable partners" (cluster-1) reported lower anxiety and depression (p < 0.001), self-oriented negative dyadic coping and closeness (p < 0.05) than "uncomfortable partners" (cluster-2). Three different dyadic profiles emerged: functional, dysfunctional, and ambivalent. Significant variations (p < 0.05) by anxiety, depression, and delegating dyadic coping existed. Results indicate there are groups of couples at greater risk for impaired psychological distress and body image concerns, which should be addressed in the context of dyadic psychosocial interventions.

A Multinational Longitudinal Study Incorporating Intensive Methods to Examine Caregiver Experiences in the Context of Chronic Health Conditions: Protocol of the ENTWINE-iCohort.

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.