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.

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.

Usability study of SOSteniamoci: An internet-based intervention platform to support informal caregivers in Italy.

Background: Providing informal care can be experienced as stressful and lead to caregiver burden. Internet-based interventions, a specific form of eHealth, have proven to be a good option to support informal caregivers. SOSteniamoci, an internet-based intervention already tested in Lithuania, was translated and adapted for Italian caregivers. Objective: As many novel eHealth solutions have been rejected by end-users due to usability problems, we aimed to evaluate the usability of the adapted platform, using a computer-based prototype. Methods: The following methods and metrics were applied: 1. task analysis, using audio and video recordings that included three usability metrics: task completion rate, frequency of errors, and frequency of help requests; 2. the system usability scale (SUS); and 3. a semi-structured interview to collect additional data about the system's design and overall satisfaction. Results: Ten informal caregivers (60% female; age M = 47.8, SD = 15.21) provided insights and suggestions for increasing the usability of the platform. The platform was considered satisfactory, with a mean score on the SUS of 75 (SD = 13.07) out of 100. The task analysis measurements highlighted difficulties in how to log in to the platform, understanding what the intervention is about, and texting the therapist. The same difficulties were also mentioned during the post-experience interview. Thus, improvements were subsequently made to enhance users' experience when navigating the platform. Finally, the platform overall was found to be intuitive and friendly, and the contents were appreciated. Conclusion: To maintain participants' engagement and prevent drop-out, it is crucial to test the usability of internet-based interventions. Even though the platform proved to be user-friendly, intuitive and easy to use, several enhancements were implemented based on participants' feedback. Thus, the usability of internet-based interventions should be tested, and end-users must be involved in the development process of such solutions.

Applying dyadic digital psychological interventions for reducing caregiver burden in the illness context: a systematic review and a meta-analysis protocol.

INTRODUCTION: Providing informal care to one's romantic partner who is ill may become a highly distressing and demanding task. Based on the innovative dyadic coping model, several support interventions have been developed to alleviate informal caregivers' burden, including both caregivers' and care receivers' needs. Considering the unique challenges characterising the caregiving phenomenon, such as geographical barriers and time restrictions, digital solutions should be considered. However, there is a lack of research examining the effectiveness of dyadic digital solutions. Thus, this review aims to examine the existing literature on the efficacy of dyadic digital psychological interventions designed for caregivers and their care-receivers couples within the illness context. METHODS AND ANALYSIS: Randomised controlled trials targeting caregivers' burden among dyads of informal caregivers and care receivers will be identified via an electronic search of the following databases: PubMed, Embase, the Cochrane Library, Cinhal, Scopus, PsycINFO, MEDLINE and supplemented by hand searching of previous systematic reviews. The search will be undertaken following the PICO (population, intervention, comparison and outcome) elements. If possible, a meta-analysis will be conducted to examine: (1) the effectiveness of dyadic digital psychological interventions for reducing caregivers' burden (primary outcome) among caregivers who are in a romantic relationship with the care receivers; (2) the effectiveness of dyadic digital psychological interventions on secondary outcomes such as anxiety, depression, stress, quality of life, well-being and self-efficacy among caregivers and care receivers; and (3) moderating effects of clinical and methodological factors on caregivers' burden. Prior to inclusion in the review, retrieved papers will be critically appraised by two independent reviewers. The Cochrane Risk of Bias tool will assess the risk of bias for randomised controlled trials. ETHICS AND DISSEMINATION: Ethical approval is not required as no primary data will be collected. Findings will be disseminated through peer-reviewed publications, presentations at academic conferences and lay summaries for various stakeholders. PROSPERO REGISTRATION NUMBER: CRD42022299125.

Couples' Coping Strategies with Left Ventricular Assist Device Implantation: A Qualitative Dyadic Study.

A left ventricular assist device (LVAD) is a mechanical device that treats advanced heart failure. Patients coping with an LVAD need extensive instrumental and medical support, which is usually provided by the spouse. Therefore, it seems that dyadic coping strategies play a crucial role as either mitigators or hinderers of couples' illness management in the context of LVADs. The aim of this research was to formulate a typology of dyadic coping strategies applied by these couples, as unfolded in their mutual and individual subjective experiences. The research was performed in collaboration with an LVAD implantation unit at a medium-sized hospital in Israel. Couples (N = 17) participated in an in-depth dyadic interview using a semi-structured interview guide, and the data collected were analyzed using content analysis. Our findings suggest that couples coping with an LVAD develop strategies for handling fear, processing and accepting their illness narratives, adjusting their level of independence and intimacy, and utilizing humor. Moreover, our analysis showed that each couple utilized a unique mix of dyadic coping strategies. To the best of our knowledge, the current study is the first to explore the dyadic coping strategies of couples coping with an LVAD. Our results may constitute a base for developing dyadic intervention programs and clinical recommendations to improve the quality of life and relationships of patients and their spouses while coping with LVAD implementation.

Barriers, facilitators, and motives to provide distance care, and the consequences for distance caregivers: A mixed-methods systematic review.

RATIONALE: Distance caregivers (DCGs) are a growing population with substantial contributions to informal care. While much is known about the provision of local informal care, evidence from the distance caregiving population is lacking. OBJECTIVE: This mixed-method systematic review examines barriers and facilitators of distance caregiving, determinants of motivations and willingness to provide distance care, and the impact on caregiver outcomes. METHODS: A comprehensive search strategy was conducted in four electronic databases and grey literature to minimise potential publication bias. Thirty-four studies, including 15 quantitative, 15 qualitative, and 4 mixed-method studies were identified. Data synthesis involved a convergent integrated approach to integrate quantitative with qualitative findings, followed by thematic synthesis to identify key themes and subthemes. RESULTS: Barriers and facilitators of providing distance care included contextual and socioeconomic aspects of geographic distance, communication and information resources, and local support networks that shaped the distance caregiver role and caregiver involvement. The main motives for caregiving given by DCGs were cultural values and beliefs, societal norms, and perceived expectations of caregiving encompassing the sociocultural context of the caregiving role. Interpersonal relationships and individual characteristics further shaped DCGs' motivations and willingness to care from a geographic distance. DCGs experienced both positive and negative outcomes as a result of their distance caretaking responsibilities including feelings of satisfaction, personal growth, and enhanced relationship with the care recipient but also high levels of caregiver burden, social isolation, emotional distress, and anxiety. CONCLUSIONS: The reviewed evidence contributes toward novel understandings about the unique nature of distance care and have important implications for research, policy, healthcare, and social practice.

Handwashing adherence during the COVID-19 pandemic: A longitudinal study based on protection motivation theory.

RATIONALE: The associations between the number of COVID-19 cases/deaths and subsequent uptake of protective behaviors may reflect cognitive and behavioral responses to threat-relevant information. OBJECTIVE: Applying protection motivation theory (PMT), this study explored whether the number of total COVID-19 cases/deaths and general anxiety were associated with cross-situational handwashing adherence and whether these associations were mediated by PMT-specific self-regulatory cognitions (threat appraisal: perceived vulnerability, perceived illness severity; coping appraisal: self-efficacy, response efficacy, response costs). METHOD: The study (#NCT04367337) was conducted in March-September 2020 among 1256 adults residing in 14 countries. Self-reports on baseline general anxiety levels, handwashing adherence across 12 situations, and PMT-related constructs were collected using an online survey at two points in time, four weeks apart. Values of COVID-19 cases and deaths were retrieved twice for each country (one week prior to the individual data collection). RESULTS: Across countries and time, levels of adherence to handwashing guidelines were high. Path analysis indicated that smaller numbers of COVID-19 cases/deaths (Time 0; T0) were related to stronger self-efficacy (T1), which in turn was associated with higher handwashing adherence (T3). Lower general anxiety (T1) was related to better adherence (T3), with this effect mediated by higher response efficacy (T1, T3) and lower response cost (T3). However, higher general anxiety (T1) was related to better adherence via higher illness severity (T1, T3). General anxiety was unrelated to COVID-19 indicators. CONCLUSIONS: We found a complex pattern of associations between the numbers of COVID-19 cases/deaths, general anxiety, PMT variables, and handwashing adherence at the early stages of the pandemic. Higher general anxiety may enable threat appraisal (perceived illness severity), but it may hinder coping appraisal (response efficacy and response costs). The indicators of the trajectory of the pandemic (i.e., the smaller number of COVID-19 cases) may be indirectly associated with higher handwashing adherence via stronger self-efficacy.

Extremely Distant and Incredibly Close: Physical Proximity, Emotional Attachment and Caregiver Burden.

Informal caregivers are at risk of caregiver burden, and physical proximity to the care recipient may add to this negative outcome. Yet, individual differences in emotional proximity to the care recipient such as attachment orientations may contribute to caregivers' comfort towards different degrees of physical proximity, leading to varying levels of burden. The current study is the first to explore the role of physical proximity on caregiver burden as moderated by attachment orientations. A sample of 162 Israeli caregivers who are active users of the Camoni website completed our online survey. Sociodemographic characteristics, including a self-reported questionnaire on the physical proximity to the care recipient, were collected. Caregivers' attachment orientations were assessed with the Experiences in Close Relationships-Relationship Structures questionnaire. Caregiver burden was assessed using the Caregiver Burden Inventory. Multiple regression and simple slope analyses were conducted. Attachment anxiety and avoidance were positively associated with burden, whereas physical proximity was not. Attachment avoidance, but not attachment anxiety, moderated the association between physical proximity and caregiver burden, with caregivers who live closer to their care recipient experiencing greater burden when high levels of avoidance were present. Our findings reveal the complex dynamics between attachment orientations and physical proximity in the context of informal care, highlighting the need for better integration of these two interlinked constructs in both care research and practice.

Cardiac-disease-induced posttraumatic stress symptoms (CDI-PTSS) among cardiac patients' partners: A longitudinal study.

OBJECTIVE: Cardiac-disease-induced posttraumatic stress symptoms (CDI-PTSS) have been detected among a substantial number of cardiac patients. Even though patients' caregiving partners are also susceptible to CDI-PTSS, the research on cardiac partners' CDI-PTSS is scarce. Based on the ecological model of trauma and recovery, we investigated levels of partners' CDI-PTSS over time, and factors that potentially contribute to it. METHOD: During patients' hospitalizations, partners (N = 143) provided data regarding demographic variables and peritraumatic emotional distress (depression and anxiety). Four months later, partners' CDI-PTSS, their emotional distress, fear of patients' illness progression, and perceived social support were assessed. Eight months posthospitalization, partners filled out questionnaires tapping CDI-PTSS. Hypotheses were tested using structural equation modeling (SEM). RESULTS: A mild level of CDI-PTSS was detected among partners, 4 and 8 months after patients' cardiac event. Partners' distress as measured during patients' hospitalization, and their fear of patients' illness progression, contributed to the manifestation of CDI-PTSS over time. CONCLUSIONS: The findings shed light on potential risk factors for partners' CDI-PTSS. Interventions to ameliorate partners' distress and fear of illness progression should be designed toward reducing the development of CDI-PTSS among partners. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

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.

The Interplay Between Strictness of Policies and Individuals' Self-Regulatory Efforts: Associations with Handwashing During the COVID-19 Pandemic.

BACKGROUND: Patterns of protective health behaviors, such as handwashing and sanitizing during the COVID-19 pandemic, may be predicted by macro-level variables, such as regulations specified by public health policies. Health behavior patterns may also be predicted by micro-level variables, such as self-regulatory cognitions specified by health behavior models, including the Health Action Process Approach (HAPA). PURPOSE: This study explored whether strictness of containment and health policies was related to handwashing adherence and whether such associations were mediated by HAPA-specified self-regulatory cognitions. METHODS: The study (NCT04367337) was conducted among 1,256 adults from Australia, Canada, China, France, Gambia, Germany, Israel, Italy, Malaysia, Poland, Portugal, Romania, Singapore, and Switzerland. Self-report data on cross-situational handwashing adherence were collected using an online survey at two time points, 4 weeks apart. Values of the index of strictness of containment and health policies, obtained from the Oxford COVID-19 Government Response Tracker database, were retrieved twice for each country (1 week prior to individual data collection). RESULTS: Across countries and time, levels of handwashing adherence and strictness of policies were high. Path analysis indicated that stricter containment and health policies were indirectly related to lower handwashing adherence via lower self-efficacy and self-monitoring. Less strict policies were indirectly related to higher handwashing adherence via higher self-efficacy and self-monitoring. CONCLUSIONS: When policies are less strict, exposure to the SARS-CoV-2 virus might be higher, triggering more self-regulation and, consequently, more handwashing adherence. Very strict policies may need to be accompanied by enhanced information dissemination or psychosocial interventions to ensure appropriate levels of self-regulation.

The trajectory of COVID-19 pandemic and handwashing adherence: findings from 14 countries.

BACKGROUND: The COVID-19 pandemic has affected people's engagement in health behaviors, especially those that protect individuals from SARS-CoV-2 transmission, such as handwashing/sanitizing. This study investigated whether adherence to the World Health Organization's (WHO) handwashing guidelines (the outcome variable) was associated with the trajectory of the COVID-19 pandemic, as measured by the following 6 indicators: (i) the number of new cases of COVID-19 morbidity/mortality (a country-level mean calculated for the 14 days prior to data collection), (ii) total cases of COVID-19 morbidity/mortality accumulated since the onset of the pandemic, and (iii) changes in recent cases of COVID-19 morbidity/mortality (a difference between country-level COVID-19 morbidity/mortality in the previous 14 days compared to cases recorded 14-28 days earlier). METHODS: The observational study (#NCT04367337) enrolled 6064 adults residing in Australia, Canada, China, France, Gambia, Germany, Israel, Italy, Malaysia, Poland, Portugal, Romania, Singapore, and Switzerland. Data on handwashing adherence across 8 situations (indicated in the WHO guidelines) were collected via an online survey (March-July 2020). Individual-level handwashing data were matched with the date- and country-specific values of the 6 indices of the trajectory of COVID-19 pandemic, obtained from the WHO daily reports. RESULTS: Multilevel regression models indicated a negative association between both accumulation of the total cases of COVID-19 morbidity (B = -.041, SE = .013, p = .013) and mortality (B = -.036, SE = .014 p = .002) and handwashing. Higher levels of total COVID-related morbidity and mortality were related to lower handwashing adherence. However, increases in recent cases of COVID-19 morbidity (B = .014, SE = .007, p = .035) and mortality (B = .022, SE = .009, p = .015) were associated with higher levels of handwashing adherence. Analyses controlled for participants' COVID-19-related situation (their exposure to information about handwashing, being a healthcare professional), sociodemographic characteristics (gender, age, marital status), and country-level variables (strictness of containment and health policies, human development index). The models explained 14-20% of the variance in handwashing adherence. CONCLUSIONS: To better explain levels of protective behaviors such as handwashing, future research should account for indicators of the trajectory of the COVID-19 pandemic. TRIAL REGISTRATION: Clinical Trials.Gov, # NCT04367337.

Motivations and willingness to provide care from a geographical distance, and the impact of distance care on caregivers' mental and physical health: a mixed-method systematic review protocol.

INTRODUCTION: Distance caregivers (DCGs) are a growing population with substantial contribution to informal care. While a reasonable amount is known on the determinants of motives and willingness to provide local informal care, and the local caregiver outcomes, reports for the distance caregiving population are lacking. An evidence synthesis of what motivates and makes DCGs willing to care from a distance and the impact of that care on their mental and physical health would highlight any gaps or consensus in knowledge. This would guide the research needed towards the development of tailored interventions, in order to support DCGs and promote the sustainability of distance care. METHODS AND ANALYSIS: This protocol adheres to Preferred Items for Reporting of Systematic Reviews and Meta-Analyses Protocols guidelines and the Joanna Briggs Institute (JBI) Methodology for mixed-method reviews. A comprehensive search strategy will be conducted in four electronic databases (CINAHL, MEDLINE, PubMed and PsycINFO). Grey literature will also be assessed to minimise publication bias. Two independent reviewers will assess each study for inclusion and any discrepancies will be resolved with the consultation of a third reviewer. Eligible studies for inclusion will be English language studies exploring the motives and willingness to care for a care recipient with a chronic disease, disability or frailty from a geographical distance; or studies focusing on the mental and physical health outcomes of DCGs. Qualitative and quantitative data will be integrated in a single qualitative synthesis following the JBI convergent integrated approach. Study quality will be assessed using the Mixed Methods Appraisal Tool version 2018. ETHICS AND DISSEMINATION: Ethical approval is not required for this study as no primary data will be collected. Findings will be disseminated through peer-reviewed publication and presentations at academic conferences and lay summaries for various stakeholders. PROSPERO REGISTRATION NUMBER: CRD42020156350.

Early Exposure to Cardiac Treatment and Distress Among Patients and Their Caregiving Partners.

Background: The experience of an acute coronary event (ACE), including early care and evaluation, can be a distressing and traumatic experience for patients and their romantic partners, who also act as caregivers. We hypothesized that, among partners who were present during the ACE, those who were also present during (1) transportation to the hospital and (2) initial medical treatment would experience greater (a) anxiety early post-event and (b) posttraumatic stress symptoms (PSS) related to the event 4 months later. The associations between partner presence with patient anxiety and PSS were also explored. Methods: Participants were ACE patients and their partners recruited between March 2015 and December 2016 from the Intensive Cardiac Care Unit (ICCU) of the Sheba Medical Center in Israel (N = 143; all patients were males and partners were females). Partners self-reported whether or not they were present during the cardiac event, the hospital drive, and initial care. Patients and partners self-reported anxiety in-hospital and PSS, keyed to the ACE, an average of 4 months later. Data were analyzed using General Estimating Equations (GEE) and Multilevel Modeling. Results: Neither patient anxiety nor PSS differed according to partner presence during the drive to the hospital. In contrast, partners had higher anxiety when they were not present at all (difference = 3.65, p = 0.019) and when present during the event and during the drive (difference = 2.93, p = 0.029) as compared to when they were present for the event but not for the drive. Partners who were present during the event, but not the drive, had lower PSS than those who were present for both the event and the drive (difference = -4.64, p = 0.026). Conclusions: Partners who accompany patients on the drive to the hospital may inadvertently put themselves at risk for greater distress following their loved one's cardiac event. Future research should enroll couples in an acute care context to inform couple-targeted tailored interventions to reduce distress in patients and their caregiving partners.

Behavior and knowledge trajectories among adult offspring of patients with an acute cardiac event: A call for a turning point in cardiac prevention.

INTRODUCTION: Early detection is critical in the prevention of cardiovascular disease (CVD). An at-risk population for cardiac disease-and conveniently approachable in terms of timing-is cardiac patients' offspring, at the moment when the parent is hospitalized for his or her own cardiac event. Based on the theoretical underpinning of life turning points, defined as perceived life course-changing events, we suggest that adult children would view the parent's cardiac event as a significant life turning point and that this understanding would motivate them to learn about CVD and to change their lifestyles accordingly. The current study's main goal was therefore to assess the baseline level and change over time in the adult offspring's knowledge of cardiac risk factors and cardiac health-promoting behaviors. METHOD: In a prospective design, 69 Israeli adult offspring of individuals newly diagnosed with an acute coronary event were approached and interviewed at 3 time points (on average 17 days, 55 days, and 125 days after the parent's hospitalization). RESULTS: Contrary to our assumption, no significant change over time was detected among the adult children with regard to body mass index, physical activity, eating behaviors, or smoking. In fact, over time, they seemed to know less about CVD risk factors than they did originally. CONCLUSION: Adult children of cardiac patients seem to be reluctant to spontaneously engage in health-promoting behaviors. The option of approaching them, in a primary preventive act, as early as during a parent's hospitalization should be further investigated. (PsycInfo Database Record (c) 2021 APA, all rights reserved).