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.

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.

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.

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.

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.

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.

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.

Getting back or giving back: understanding caregiver motivations and willingness to provide informal care.

Background: Informal caregivers are those providing care, which exceeds that which is typically provided, to a relative or friend with care needs. Informal caregiving constitutes the backbone of a society's care supply and with ageing populations the need for informal care is growing. We know little as to why caregivers start caring and continue doing so, yet understanding of motivations and willingness to provide care is important if informal caregivers are to be supported. However, both motivations and willingness are inconsistently defined making it difficult to compare the empirical findings that do exist. Methods: This paper reviews and synthesises thinking about the theoretical constructs of motivations to provide care and willingness to perform informal care, and presents those in relation to existing theoretical and empirical literature. Results and Conclusions: Theoretical reflections based on various motivational frameworks and available empirical data are presented to illustrate that: caregiving motivations should be conceptualised as multifaceted and multiply determined; intrinsic and extrinsic motivations should not be treated as antagonistic and can occur simultaneously; the commonly applied model of extrinsic/intrinsic motivations is oversimplified and omits consideration of the diversity of caregiver motives; other motivational models can be discerned in the context of the empirical research; there are differences between motivations and willingness to provide care with the latter being more consequent to the motives; both should be considered dynamic in nature; and finally, that the two constructs may not inevitably lead to actual caregiver behaviour. The implications of these theoretical reflections for methodology and research as well as their relevance for practice and policy are indicated.

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.

Touch and Pain Sensations in Diadynamic Current (DD) and Transcutaneous Electrical Nerve Stimulation (TENS): A Randomized Study.

The study investigated touch and pain sensations and the correlation between them in diadynamic current (DD) and transcutaneous electrical nerve stimulation (TENS), electrotherapies commonly applied in musculoskeletal disorders and occupational rehabilitation medicine. Forty healthy subjects were treated with either DD (n=20) or TENS (n=20). Each treatment consisted of three sessions with one-week interval. Touch sensation was determined with the JVP Domes esthesiometer, pain sensation with pressure pain threshold (PPT), and pressure pain tolerance threshold (PPTO) by an algometer. During each session the measurements were performed before the application of the procedure (T0), immediately after it (T1), and 30 minutes after the end of the procedure (T2). Both DD and TENS increased touch sensation (p<0.01) and did not significantly alter PPT and PPTO (p>0.05). No statistically significant differences in short-term effects, i.e., 3 weeks of the trial, were noted between DD and TENS in their influence on touch and pain sensations (p>0.05). There was a high significant correlation between touch and pain sensations in DD (r=0.86). TENS and DD caused similar analgesic effects. DD, which is shorter in the duration of the treatment, may comprise a realistic alternative to TENS in clinical practice of pain management.