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.

Supporting Individuals With an Acquired Brain Injury: An Interpretative Phenomenological Study Exploring the Everyday Lives of Caregivers.

Acquired brain injury (ABI) is one of the most common causes of disability and death globally. Support from informal caregivers is critical to the well-being and quality of life of people with ABI and supports the sustainability of global health and social care systems. This study presents an in-depth qualitative analysis of the experiences of eight British informal caregivers supporting someone with ABI. Semi-structured interviews were conducted with narratives transcribed verbatim and analysed using interpretative phenomenological analysis (IPA). Three superordinate themes were generated: making sense of brain injury; being consumed by caregiving; and, the changing self. These data highlight the impact of caregiving on the caregiver's illness perceptions and sense of self. By identifying negative and positive changes in the caregiver's sense of self, and dilemmas regarding the care recipient's behaviour, we address less understood aspects of caregiver experiences. Caregiving can pose both challenges to the caregiver's sense of identity and an opportunity for self-growth. Some caregivers exhibit resilience throughout their journey, with post-traumatic growth more apparent in the later stages of caregiving. Illness perceptions shape caregiver well-being and family dynamics and indicate the need to address stigmatisation and discrimination faced by ABI survivors and caregivers. Although some caregivers acquired positive meaning and enrichment from their caregiving, previously described challenges of ABI caregiving are supported. Overall, our findings support the need for timely psychological/mental health support for caregivers, caregiver education, and the provision of short breaks from caregiving.

How Culture Shapes Informal Caregiver Motivations: A Meta-Ethnographic Review.

The provision of informal care presents a significant global challenge. To better understand how cultural factors underpin and shape motivations and willingness to provide informal care for adults, an in-depth qualitative synthesis was conducted. Six electronic databases and a wide range of additional sources were searched. Following meta-ethnographic guidelines, 37 qualitative studies were synthesised. Six main concepts were identified: cultural self-identity, which appeared as an overarching explanatory concept; cultural duty and obligations; cultural values; love and emotional attachments; repayment and reciprocity; and competing demands and roles. These concepts informed a model of cultural caregiving motivations, offering an inductive-based exploration of key cultural motivators and highlighting implications for theory development, future research, policy and practice. The model holds implications for the actual exchange of care. Caregiver motivations should not be taken for granted by healthcare or social care professionals involved in assessment and support planning, educational endeavours at a population level may support caregiving, and support should be sensitive to cultural caregiving motivations.

Trial of Optimal Personalised Care After Treatment-Gynaecological Cancer (TOPCAT-G): A Randomized Feasibility Trial.

OBJECTIVE: This study aimed to evaluate the feasibility of completing a parallel-group randomized controlled trial to compare usual follow-up care for women who have completed treatment of gynecological cancer against a nurse-led telephone intervention, known as Optimal Personalised Care After Treatment-Gynaecological. METHODS: The unblinded trial aimed to recruit patients who had completed treatment of cervical, endometrial, epithelial ovarian, or vulval cancer within the previous 3 months at 3 North Wales hospitals. We randomized participants to either usual hospital-based follow-up or specialist nurse-led telephone education, empowerment, and structured needs assessment follow-up. The primary outcomes assessed the feasibility of running a larger trial including patient eligibility, recruitment and retention rates, and outcome measure completion. Secondary outcomes were generic and health-related quality of life and a patient self-report health service use (Client Service Receipt Inventory) data collected at 3 time points (baseline, 3 months, and 6 months). RESULTS: Of the 58 women screened, 44 were eligible (76%) and 24 (55%) were recruited and randomized (12:12 to control and intervention, respectively). One participant was lost to follow-up. Recruited participants had a mean (SD) age of 60 (11.2) years and were approximately 5 months from their initial diagnosis (mean [SD], 159 [58] days). Seventeen (71%) of the participants had an endometrial cancer diagnosis. All outcome measure completion rates exceeded 96%. Although not a core feasibility objective, analyses of outcome measures indicated positive changes in quality of life and well-being within the Optimal Personalised Care After Treatment-Gynaecological group; exploratory cost consequence analysis indicated that the nurse-led intervention had a mean total service use cost of £27 per patient (bootstrapped 95% confidence interval, -£290 to £240) lower than did the standard care group. CONCLUSION: Eligibility, recruitment, and retention rates as well as outcome measure completion showed that the trial is feasible.

The associations of illness perceptions and self-efficacy with psychological well-being of patients in preparation for joint replacement surgery.

Patient well-being on referral to surgery likely affects their surgical experience yet few studies examine pre-surgical correlates of well-being. Guided by the Common Sense Model of Self-Regulation and Social Cognitive theory, this study examined whether illness and emotional representations, general and domain self-efficacy were associated with pre-surgical well-being. The pre-surgical assessment of a three-wave prospective study is reported. Fifty-four hip and knee replacements patients (mean age = 69.33; SD = 8.57) were recruited in the pre-surgery educational clinic at a UK general hospital. Patients completed a questionnaire-pack including the Revised Illness Perceptions Questionnaire, the General Self-Efficacy Scale, the Self-Efficacy for Rehabilitation Outcome Scale, the Falls-Efficacy Scale, and the Short Form of Psychological Well-Being Index. Multiple hierarchical regression analyses showed that above and beyond demographic and clinical characteristics, negative emotional representations were associated with lower psychological well-being while strong general self-efficacy beliefs were positively related to psychological well-being. Independent of demographic and clinical characteristics, joint replacement patients' psychological well-being was associated with their cognitions and emotional reactions to their condition before surgery. Early interventions could potentially target these modifiable factors to improve pre-surgical well-being in this group of patients, with potential for additional post-surgical benefit.

Does self-efficacy influence recovery and well-being in osteoarthritis patients undergoing joint replacement? A systematic review.

OBJECTIVE: To investigate the role of self-efficacy in functional recovery and well-being outcomes in osteoarthritis patients, undergoing hip or knee replacement surgery. DATA SOURCES: Studies were identified using MEDLINE via PUB med, PsycINFO and CINAHL from inception to July 2013. METHODS: Three search strategies that combined key terms of 'self-efficacy', 'functional recovery', 'well-being' and 'joint replacement' were applied. Titles and abstracts were screened for eligibility and, accordingly, potentially eligible studies were retrieved for review. Included studies were assessed in terms of their quality, and data were extracted by two independent reviewers. A narrative synthesis of results was conducted. RESULTS: In total, 836 articles were identified and after electronic de-duplication, 708 articles remained. After screening 15 articles were retrieved as potentially eligible and eight articles were included in the review. Of the eight studies (n = 967 patients), seven had a prospective design and all studies were considered of good quality. No fully conclusive evidence for the influence of self-efficacy upon functional recovery outcomes was found. When the timing of self-efficacy measurement was examined, post-operative self-efficacy was found to be related to functional recovery outcomes. CONCLUSION: Presurgical self-efficacy was the least consistent predictor of functional outcomes while postoperative self-efficacy was more consistently associated with recovery outcomes such as longer distance ambulation, exercise repetition and frequency, walking speed and disability.

Does coping mediate the relationship between familism and caregiver outcomes?

OBJECTIVES: The sociocultural model of stress and coping, which despite receiving support from several studies conducted with diverse ethnic groups, has yet to be tested longitudinally or used within the context of positive caregiver outcomes. The aim of the current study was to test a specific component of the model, which posits that caregiver coping will be influenced by the cultural value of familism (feelings of solidarity and loyalty among family members), which will in turn affect caregiver outcomes. METHOD: A questionnaire was completed by 123 family caregivers in the UK assessing familism, use of coping strategies, caregiver gains, anxiety and depression at three time points over nine months. RESULTS: Mediation analysis followed guidelines proposed by Baron and Kenny. Religious coping and positive reframing at time 2 (T2) were found to significantly mediate between familism values at time 1 (T1) and caregiver gains at time 3 (T3). Behavioural disengagement at T2 was found to mediate between familism at T1 and caregiver depression at T3. Additionally familism was found to be positively associated with both negative and positive aspects of caregiving. CONCLUSION: Our longitudinal findings suggest that interventions and services acknowledging caregiver values and the associated coping responses may prove beneficial.

Exploring caregiving experiences: caregiver coping and making sense of illness.

OBJECTIVES: The current research explores how family caregivers (1) make sense of caregiving and (2) cope with their circumstance. METHOD: We analysed semistructured interviews of 13 caregivers of people with either stroke (n = 5) or dementia (n = 8) and used photographs that caregivers took exemplifying their caregiving experiences to elicit their description of how they made sense of caregiving. This enabled greater insight into caregivers' perspective of caregiving complementing our use of Interpretative Phenomenological Analysis (IPA) to analyse verbatim transcripts. RESULTS: Emerging themes included (1) making sense of illness including the implications of receiving a diagnosis, caregiving motivations and receiving support, and (2) coping with caregiving, with variance in coping depending on, in part, individual differences in sense making. Caregivers adopted active and information seeking techniques to deal with current problems and to increase their sense of control, but avoidant techniques when considering future logistics of caregiving and when feeling helpless due to the burden they faced. At times caregivers looked on the bright side and made downward comparisons. CONCLUSION: The combination of elicitation techniques and analysis using IPA established patterns across caregivers and individual differences between caregivers in the meaning they assigned to their caregiving experience. Differences in sense making were based on the context of the caregiving stressor, which in turn influenced the variability in caregiver's coping techniques adopted. The analysis detailed within this article provides evidence that information and service provision must be tailored to individual caregiver experiences.

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.

Ethnicity, familism and willingness to care: important influences on caregiver mood?

OBJECTIVE: Few studies have to date examined the effects of ethnicity on caregiver motivations, coping responses and mood. This theoretically informed study uses the socio-cultural model of stress and coping to explore these relationships amongst a White-British and British South-Asian caregiver sample. METHOD: A total of 235 primary family caregivers were recruited for a cross-sectional questionnaire survey; of which 162 were White-British and 73 were British South-Asian. RESULTS: British South-Asian caregivers differed from White-British caregivers on several variables within the stress-coping framework. British South-Asian caregivers were younger, had significantly higher levels of familism, used significantly more behavioural disengagement and religious coping and reported having significantly less support than White-British caregivers. White-British caregivers were more likely to make use of substances and humour as coping methods, and also in these caregivers, familism was significantly related to caregiver depression. Whilst levels of willingness to care did not differ between the two caregiver groups, opposing relationships were seen in the association between willingness to care and caregiver anxiety. Regression analyses found that self-blame explained a significant proportion of variance in South-Asian anxiety and depression, whereas depression amongst White-British caregivers was associated with high use of substances, low use of humour and low mean satisfaction with support. CONCLUSION: These findings offer support to the socio-cultural model of stress and coping in that coping is associated with two outcomes (anxiety and depression), but motivational factors are also highlighted which have additional implications for the development of culturally specific interventions aimed at reducing caregiver distress.

Informal caregiver motivations, values, challenges and gains: A photovoice and interpretative phenomenological analysis of interrelationships.

The adoption of a caregiving role in the context of illness and disability is often taken for granted. This study explores caregivers' motivations to provide care and how these relate to values, and to the challenges and gains of caregiving. Eight semi-structured interviews were conducted with caregivers and photographs were taken by caregivers to exemplify their caregiving experiences. This photo-elicitation method complemented the use of Interpretative Phenomenological Analysis when applied to verbatim transcripts. Superordinate themes included: caregiver's life story; significance of family; caregiving obligations; caring relationship; challenges and gains associated with caregiver motivations. Intrinsic and extrinsic motivations were less distinct in caregivers' lived experiences than previously suggested, and were influenced by family values and specific challenges and gains of caregiving. The coexistence of different motivations and the nature of single complex motivations is discussed. The importance of caregiver assessment and support planning, and regular breaks from caregiving are highlighted.

Cultural and societal motivations for being informal caregivers: a qualitative systematic review and meta-synthesis.

ABSTRACTInformal caregiving constitutes the mainstay of a society's care supply. Motivations for caring and continuing to provide care are crucial to understanding the nature of caregiver experiences and their relationship with the person/people they support. This systematic review of qualitative evidence examines determinants of motivations and willingness to provide informal care. One hundred and five qualitative studies published before August 2019 and fitting the inclusion criteria were identified, 84 of them pertaining to cultural and societal motivations for caregiving. Grounded theory-based, thematic synthesis was conducted. Cultural and societal factors strongly underpinned motivations and willingness for informal caregiving. The main cultural motives for caregiving were cultural values and beliefs encompassing the ethnocultural context of the caregiving role, culture-specific norms, cultural and spiritual beliefs, illness beliefs and socialisation. Societal norms and perceived expectations, such as gendered roles, norms and expectations of caregiving, and perceptions of health and social care services further shaped caregiver motivations and willingness to provide care. These meta-synthesis findings contribute towards novel understandings about the cultural and societal aspects shaping informal care provision. These findings bear important implications for theory, research, policy and practice; all of which contributing to the issue of the sustainability of informal care from a 'macro' perspective.

Why do they care? A qualitative systematic review and meta-synthesis of personal and relational motivations for providing informal care.

Informal caregiving is crucial to the sustainability of health and social care systems globally. With ageing populations and a rising prevalence of acute and chronic health conditions, the need for informal care is growing, making it important to understand what motivates individuals to care and to continue caring. This paper reports findings of a systematic review which examined determinants of motivations and willingness to provide informal care. A systematic search was conducted using six electronic databases and a wide range of additional sources. 105 qualitative studies published before August 2019 were included with 103 of them reporting on personal and relational motivations, and the contextual factors underpinning these. Grounded theory-based, thematic synthesis was applied to synthesise the literature. This meta-synthesis reports on findings from across the world spanning three decades, with data from over 2500 caregivers across a range of health conditions. This paper presents the relational, personal and contextual themes. It highlights the significance of reciprocity, affection, family values and caregiving obligations. Personal characteristics, finding meaning, illness perceptions, situational and temporal aspects of caregiving are also identified as important in shaping motivations and willingness to care and to continue caring. Implications for theory, research, policy and practice are discussed.

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.

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.

Social Return on Investment of Nature-Based Activities for Adults with Mental Wellbeing Challenges.

Increased time spent in nature can enhance physical health and mental wellbeing. The UK Government's '25 Year Environment Plan' recommends extending the health benefits of contact with nature to a wider group of people, including those with mental health challenges. This study investigated whether nature-based interventions (NBIs) for people with mild mental health challenges could generate a positive social return on investment (SROI). Between May 2017 and January 2019, 120 participants at six outdoor sites in Wales participated in a 6 to 12-week NBI, which consisted of a weekly 2- to 4-h session. Quantitative data were collected from baseline and follow-up questionnaires identifying participant demographics and measuring mental wellbeing, physical activity, self-efficacy, and social trust. Wellbeing valuation generated a range of social value ratios by applying the Housing Association Charitable Trust (HACT) Social Value Calculator (SVC 4.0) and HACT Mental Health Social Value Calculator (MHSVC 1.0). Seventy-four participants (62%) completed follow-up questionnaires at 6 months. SROI ratios were calculated using the SVC for physical activity, self-efficacy, and social trust. The MHSVC generated social value ratios for mental wellbeing. The base case results revealed a positive social value ratio for participants, ranging from British Pound Sterling (GBP) 2.57 to GBP 4.67 for every GBP 1 invested, indicating favourable outcomes in terms of value generated.

Anxiety, depression and quality of life after cancer diagnosis: what psychosocial variables best predict how patients adjust?

OBJECTIVE: Significant numbers of cancer patients suffer distress, reduced quality of life and various other psychological problems. Evidence regarding psychological predictors of these outcomes is inconsistent. This study explored a range of predictors using an established psychological framework to identify the most important predictors of cancer adjustment, and when these are best assessed for optimal outcome prediction. METHODS: One hundred sixty newly diagnosed breast, colorectal, lung and prostate cancer patients completed questionnaires after diagnosis and at 3- and 6-month follow-up. Measures included personality, illness cognitions, emotion, coping and outcome (anxiety, depression and quality of life). RESULTS: Between 47-74% of variance in psychosocial outcome was explained although large proportions were accounted for by clinical factors, demographics and earlier levels of anxiety, depression and quality of life. Of the psychological variables, cognitive appraisals featured more consistently then either emotions or coping. CONCLUSIONS: There are clear and consistent predictors of negative psychosocial outcome that could be used in clinical practice to risk-assess and monitor patients for adjustment difficulties. The finding that appraisals were more predictive of outcome than emotions and coping may inform the development of psychological interventions for cancer patients.

The mini-mental adjustment to cancer scale: re-analysis of its psychometric properties in a sample of 160 mixed cancer patients.

BACKGROUND: The mini-Mental Adjustment to Cancer Scale is designed to assess psychological responses to cancer diagnosis and is widely used in research and clinical practice. Recent evidence demonstrates adequate convergent validity but inconsistent internal consistency and factor structure. This study aimed to provide a parsimonious factor structure with clinical utility. METHODS: Repeated measures data were collected from 160 cancer patients (mixed illness type) at diagnosis and 3-month follow-up. Principal axis factoring with oblimin rotation was used. The number of factors was decided using parallel analysis. The resultant factors were compared against the recommended five-factor structure on internal consistency (Cronbach's alpha) and test-retest reliability and convergent validity (Pearson's correlation). RESULTS: Parallel analysis suggested that a four-factor model optimally fits these data. Two of these-cognitive avoidance and fighting spirit-are equivalent to the original factor structure. Redistribution of the remaining items resulted in factors of cognitive distress and emotional distress. Internal consistency and test-retest reliability of the new four-factor structure are equivalent, but convergent validity is much improved overall when compared with a five-factor structure, with the exception of the fighting spirit factor. CONCLUSIONS: The revised four-factor structure represents a more psychometrically sound measure of psychological adjustment in the current dataset. Findings related to the larger cognitive distress factor are congruent with data from foreign-language validation studies. The brevity of this improved measure may make it easier to administer in the clinical setting.

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.