Background
Informal caregivers provide care for family members or friends who have care and support needs consequent to ageing, illness or health challenge(s) [
1]. In Europe, an estimated 20–44% of individuals perform informal care [
2], forming the backbone of health and social care delivery worldwide [
3]. However, demographic changes and the ‘care gap’ pose risks to the sustainability of informal caregiving. The caregiver-care recipient support ratio is projected to decline in nearly all European countries, from 6 potential caregivers per care recipient in 2011 to 2 potential caregivers by 2050 [
4].
The health and social care policies underpinning family support systems and the cultural values influencing the provision of informal care vary widely between countries [
5]. Aranda & Knight [
6] found cultural differences in caregiver appraisals, coping and use of social support which affected caregiver outcomes [
7,
8], however it is only in more recent years that cross-country analyses of informal caregiving have been documented [
5,
9‐
11]. Cross-country differences remain rarely described when it comes to caregiver motivations, willingness, values, meaning in life, illness beliefs, and caregiver experiences of wellbeing, gain, health-related quality of life, burden and depression. It is necessary to consider the contextual factors that may influence caregiver experience, in particular the different care systems and family culture that may exist across different countries [
10,
12‐
14] as these may inform caregiver experiences. The current exploratory paper endeavours to investigate variations in caregiving experiences across different countries, focusing on caregiver motivations, and willingness to care, values, meaning in life, illness beliefs, wellbeing, gain, health-related quality of life, burden, and depression. The cross-country variations in the above-mentioned psychosocial variables comprise a major lacuna in the caregiving literature and should be documented.
The constructs of
motivations and
willingness to provide care are essential to our understanding of the caregiving experience [
15]. Caregiving motivations are typically conceptualised as either extrinsic or intrinsic, especially in the caregiving literature [
15‐
17]. Intrinsic motivations emerge from internal influences (e.g., emotional bonding), extrinsic motivations from external influences (e.g., social expectations).
Willingness to provide care refers to a caregiver’s attitude towards providing various forms of support for an individual, whether this relates to a current or future need [
18]. We have limited understanding of the extent to which motivations and willingness to provide informal care vary between countries.
Prior research has identified differences and similarities in cultural and personal values across countries [e.g.,
19,
20], including familism [
7]. Examined in the context of caregiving,
familism is a multidimensional construct incorporating values of familial piety, felt responsibility and familial obligation [
7]. Different countries have differing family cultures which underpin the value of familism [
10,
12,
13].
Personal values are broad beliefs that serve as guiding principles in a person’s life with ‘basic’ universally-valid values including those of power, achievement, benevolence, or universalism [
21]. These basic values can form ‘higher-order’ values, such as self-enhancement values (comprising power and achievement values) which oppose self-transcendence values (comprising universalism and benevolence values), reflecting self-interest versus concern for others’ welfare [
21].
Meaning in life is one of the oldest constructs examined by psychologists [
22,
23]. Although cross-country variations in the meaning in life have been investigated [
24], the construct has not been examined in the context of caregiving. A global meaning (meaning in life), rather than a situational meaning (meaning in caregiving only), was investigated in two distinct and independent domains: the
presence of meaning which captures the subjective sense that one’s life is meaningful, and the
search for meaning which measures the drive and orientation toward finding meaning in one’s life [
25].
Beliefs about health and illnesses are culturally bound [
14]. For instance, a person with cultural beliefs rooted in karma may see caregiving as repaying debts from previous lives [
26]. Qualitative meta-synthesis [
14,
27] has evidenced illness perceptions to be determinants of caregiver experience (i.e., motivations and willingness to provide care) and potential cross-cultural differences in illness perceptions. Cultural, societal or illness epidemiology differences between countries may lead to different caregiver illness perceptions, including the perception of the care recipient’s
illness threat [
28]. Literature on between-country variations in perceived illness threat is limited amongst patient groups [e.g.,
29], and in terms of variations in caregivers’ perceptions of their care recipients’ health condition(s). Illness perceptions, including perceived illness threat, may have an important impact on caregivers’ and care recipients’ wellbeing [
30,
31].
Caregivers can experience both positive and negative experiences as a result of their caregiving [
32,
33]. These experiences may differ by national contexts since care is differently organised across different countries. Informal care provision is also a dynamic and multifaceted experience that occurs in a sociocultural context, and changes over time in response to many factors. Factors such as gender and age have been linked to variation in caregiving experiences [e.g.,
34‐
36], but little is known about between-country variations [
5,
12,
37], including variations in wellbeing, gains, health-related quality of life, burden, and depression. A European multinational cohort study conducted in 8 countries reported multiple cross-country differences in caregiver burden and health-related quality of life, and related these differences to national health and social care systems [
5]
1. Another multinational study conducted in 8 European countries documented variations in caregiver burden and quality of life across countries although psychological wellbeing was found to be similar [
9]. In this study the biggest differences were seen between southern European countries (e.g., Spain) and northern European countries (e.g., Sweden) with southern countries reporting higher caregiver burden than northern countries. These differences, as these authors propose and as we hypothesise below, may be related to differences in health and social care systems [
9].
Country context underpinning caregiving
This paper draws on data from the ENTWINE-iCohort - a multinational study designed to explore caregivers’ experiences in the context of chronic health conditions [
38]. Caregiving is embedded in a specific national context, shaped by different historical, political and economic circumstances and inevitably countries vary in the extent to which informal caregivers are supported by public policies [
39,
40]. Countries in the current sample (ENTWINE-iCohort)
2 included Greece, Israel, Italy, the Netherlands, Poland, Sweden, and the UK, and these countries have different forms of caregiver support in place.
Anderson [
13] proposes a classification of caregiver support systems, distinguishing between countries with an informal care-led model (family-based model), and countries with a service-led model. This dichotomous classification has been applied within previous cross-country studies on informal care where family-based countries were defined as those with a strong role of family as the main supplier of care whilst service-based countries were those where the state provides most of the care, with statutory support widely offered [
10,
12]. Other classifications, such as those provided in national policies for adult caregivers across Europe and published by the European Commission [
39,
40] distinguish more categories of country based upon the support available to informal caregivers, ranging from countries characteristic of
developed caregiver support to countries with
underdeveloped caregiver support [
39,
40]. Table
1 below presents a short classification of countries included in the ENTWINE-iCohort based on these two categorisations of caregiver support systems [
13,
39,
40]. In general, provision of care services is found to be lower and informal care higher in more southern and eastern European countries [
5,
41,
42].
The cultural context across countries: individualist-collectivist cultures of countries
When exploring national variations in caregiving, it is important to acknowledge the potential contribution of the dimensions of collectivism-individualism, described particularly within cultural psychology [
43]. Individualist cultures are characterised by a focus on individual needs and relative detachment from relationships and communities whereas collectivist cultures are defined by the importance of relationships, roles and status within a social system. Based on a comparison across 65 countries, scaled (scale range 0-100) on a collectivism–individualism continuum and where higher scores indicate more individualist cultures, lower scores indicate more collectivist cultures, Hofstede and colleagues [
44] found the following scale scores: the United Kingdom (89), the Netherlands (80), Italy (76), Sweden (71) scored high on individualism, whereas Poland (60) and Israel (54) received medium scores, with Greece scoring the lowest (35).
Table
1 below presents a short classification of countries analysed in this article and included in the ENTWINE-iCohort based on the above-mentioned categorisations of caregiver support systems [
13,
39,
40] and cultural dimensions of collectivism-individualism [
44].
Table 1
Policy and cultural country characterisation (ENTWINE-iCohort)
Greece | Family-based | 35 |
Israel | Mixed | 54 |
Italy | Mixed | 76 |
Netherlands | Mixed | 80 |
Poland | Family-based | 60 |
Sweden | Service-based | 71 |
United Kingdom | Mixed | 89 |
Study aims and hypothesis
The aim of the current study was to examine cross-country variations for six European countries and Israel, focusing on the following variables: caregiver motivations, willingness, values, meaning in life, perceived illness threat, and caregiver experiences of wellbeing, gain, health-related quality of life, burden and depression. Based on the above reviewed limited evidence base, we hypothesised that there would be greater negative impact of caregiving in family-based, informal care-led countries compared to in service-based countries due to higher caregiving responsibilities/reduced receipt of formal support.
Results
Sample characteristics
The data from the ENTWINE survey analysed in this article included 879 caregivers from seven countries (Greece, Israel, Italy, the Netherlands, Poland, Sweden, and the UK), with Germany and Ireland excluded from the analysis due to low recruitment numbers (
N = 25,
N = 42, respectively). Characteristics of caregiver participants and their care recipients overall and by country are presented in Table
2. Caregivers had a mean age of 56 years and were predominantly women (87%). The youngest mean age was reported in Israel (51 years) and the oldest in Sweden (61 years). Most participants (83%) had at least post-secondary education. Half (50%) of the caregivers were employed, with lower percentages in the UK (34%). The majority (70%) were married or in a partnership. Most caregivers (74%) fell into the lowest income level, with variations across countries and a wide range (49% in Israel to 97% in Greece). Around 59% of participants shared a household with their care recipient(s). Religion was not assessed in Italy and Sweden, while ethnicity was not assessed in Italy, Sweden, and the Netherlands (constituting 31% of the total sample). Among the assessed participants, 65% considered themselves religious. The predominant ethnicity among the remaining countries was British or Irish (38%), followed by Eastern and Central European (21%), Mediterranean (19%), Jewish (16%), and other ethnic groups (6%). Around two-thirds of caregivers did not receive help or support from services, and 85% did not receive welfare benefits. Whilst most caregivers reported being the only caregiver for the care recipient (59%), some did share caring responsibilities (41%). Among those who shared care, 60% identified themselves as the primary caregiver. The majority (84%) considered themselves the primary caregiver, and 42% had provided care to another person in the past. Most caregivers (87%) had provided care for at least a year, with variations across countries. On average, caregivers provided 54.04 h of care per week, with variations across countries. Around 55% of caregivers reported no personal health condition. Caregivers were providing care mostly to parents/parents-in-law (46%) or to partners (32%).
Care recipients were mostly females (51%), with a mean age of 70 years. According to the KATZ Index, care recipients fell between full and partial dependence for activities of daily living (M = 2.93), with the highest independence in the Netherlands and Sweden (KATZ Index M = 3.56; 3.42, respectively) and the lowest in Italy and Poland (KATZ Index M = 2.25; 2.20, respectively). The most common health condition reported among care recipients was ‘other’ (40%), followed by cardiovascular conditions (36%), cognitive or memory impairment (32%), stroke or cerebral vascular disease (17%), diabetes (17%), cancer (16%), and rheumatic health conditions (13%). The remaining conditions were reported in less than 10% of care recipients. Around 40% of caregivers provided care for individuals with a single health condition; around 57% of caregivers provided care for individuals with multiple chronic health conditions, while 3% reported providing care due to the care recipient’s old age, frailty or following an injury.
Table 2
Cross-country and overall demographic data for informal caregivers and their care recipients
Informal caregivers’ characteristics | | | | | | | | | | | | | | |
Age | | 80 | 53.58 (11.48) | 125 | 50.85 (15.97) | 187 | 53.13 (10.91) | 189 | 57.69 (10.42) | 69 | 52.33 (11.95) | 90 | 60.97 (12.65) | 139 | 60.02 (11.49) | 879 | 55.66 (12.53) |
Gender | Female | 68 | 85% | 101 | 81% | 161 | 87% | 171 | 90% | 62 | 90% | 76 | 84% | 122 | 88% | 761 | 87% |
Male | 12 | 15% | 24 | 19% | 24 | 13% | 17 | 9% | 7 | 10% | 14 | 16% | 16 | 12% | 114 | 13% |
Other | 0 | 0% | 0 | 0% | 1 | 1% | 1 | 1% | 0 | 0% | 0 | 0% | 1 | 1% | 3 | 0% |
Education | Primary | 2 | 3% | 0 | 0% | 0 | 0% | 2 | 1% | 0 | 0% | 3 | 3% | 1 | 1% | 8 | 1% |
Secondary | 19 | 24% | 22 | 18% | 15 | 8% | 28 | 15% | 8 | 12% | 14 | 16% | 14 | 10% | 120 | 14% |
Post-secondary vocational education | 15 | 19% | 16 | 13% | 79 | 42% | 134 | 71% | 12 | 17% | 23 | 26% | 43 | 31% | 322 | 36% |
Post-secondary academic education | 43 | 54% | 87 | 70% | 93 | 50% | 23 | 12% | 41 | 59% | 47 | 52% | 80 | 58% | 414 | 47% |
Not listed or other | 1 | 1% | 0 | 0% | 0 | 0% | 2 | 1% | 8 | 12% | 3 | 3% | 1 | 1% | 15 | 2% |
Employed | No | 31 | 39% | 46 | 37% | 93 | 50% | 97 | 51% | 30 | 44% | 48 | 53% | 92 | 66% | 437 | 50% |
Yes | 49 | 61% | 79 | 63% | 94 | 50% | 92 | 49% | 39 | 56% | 42 | 47% | 47 | 34% | 442 | 50% |
Other informal caregiver(s) | No | 38 | 48% | 51 | 41% | 105 | 56% | 130 | 69% | 36 | 52% | 66 | 73% | 93 | 67% | 519 | 59% |
Yes | 42 | 53% | 74 | 59% | 82 | 44% | 59 | 31% | 33 | 48% | 24 | 27% | 46 | 33% | 360 | 41% |
Provided care to other CR in the past | No | 46 | 58% | 80 | 64% | 125 | 67% | 74 | 39% | 45 | 65% | 63 | 70% | 75 | 54% | 508 | 58% |
Yes | 34 | 43% | 45 | 36% | 62 | 33% | 115 | 61% | 24 | 35% | 27 | 30% | 64 | 46% | 371 | 42% |
Help and support from services | No | 51 | 64% | 59 | 48% | 111 | 59% | 91 | 50% | 51 | 74% | 54 | 60% | 100 | 73% | 517 | 60% |
Yes | 29 | 36% | 63 | 52% | 76 | 41% | 92 | 50% | 18 | 26% | 36 | 40% | 37 | 27% | 351 | 40% |
Relationship of CG to CR | spouse/partner | 7 | 9% | 19 | 15% | 44 | 24% | 84 | 44% | 11 | 16% | 55 | 61% | 57 | 41% | 277 | 32% |
parent/parent-in-law | 59 | 74% | 70 | 56% | 106 | 57% | 66 | 35% | 42 | 61% | 17 | 19% | 52 | 37% | 412 | 46% |
daughter/son | 6 | 8% | 5 | 4% | 24 | 13% | 17 | 9% | 2 | 3% | 13 | 14% | 15 | 11% | 82 | 10% |
another family member | 6 | 7.5% | 23 | 18.4% | 9 | 4.8% | 9 | 4.8% | 9 | 13.0% | 3 | 3.3% | 7 | 5.0% | 66 | 7.5% |
non-relative member | 2 | 3% | 8 | 6% | 4 | 2% | 13 | 7% | 5 | 7% | 2 | 2% | 8 | 6% | 42 | 5% |
Sharing the same household with CR | No | 37 | 46% | 82 | 66% | 62 | 33% | 87 | 46% | 29 | 42% | 26 | 29% | 42 | 30% | 365 | 41% |
Yes | 43 | 54% | 43 | 34% | 125 | 67% | 102 | 54% | 40 | 58% | 64 | 71% | 97 | 70% | 514 | 59% |
Choice in taking on the responsibility of caring | No | 61 | 76% | 82 | 66% | 134 | 72% | 158 | 84% | 46 | 67% | 78 | 87% | 103 | 74% | 662 | 75% |
Yes | 19 | 24% | 43 | 34% | 53 | 28% | 31 | 16% | 23 | 33% | 12 | 13% | 36 | 26% | 217 | 25% |
Total period of caregiving in weeks (range in years) | 80 | 315.53 (0.01–49) | 125 | 243.49 (0.01–30) | 187 | 406.82 (0.8–50) | 189 | 397.00 (0.07–30) | 69 | 298.37 (0.17–43) | 90 | 310.27 (0.17–31) | 139 | 446.83 (0.05–41) | 879 | 361.10 (0.01–50) |
Total number of hours spent on caregiving per last week | 80 | 49.77 (44.78) | 125 | 30.93 (39.14) | 187 | 73.71 (70.41) | 189 | 40.70 (41.33) | 69 | 72.50 (56.10) | 90 | 49.05 (44.49) | 139 | 63.01 (48.03) | 879 | 54.04 (53.43) |
CG’s health condition | A physical impairment or disability | 6 | 8% | 20 | 16% | 11 | 6% | 30 | 16% | 2 | 3% | 13 | 14% | 20 | 14% | 102 | 12% |
Sight or hearing loss | 1 | 1% | 13 | 10% | 7 | 4% | 15 | 8% | 1 | 1% | 13 | 14% | 12 | 9% | 62 | 7% |
A mental health problem or illness | 7 | 9% | 14 | 11% | 11 | 6% | 18 | 10% | 2 | 3% | 7 | 8% | 18 | 13% | 77 | 9% |
A learning disability or difficulty | 2 | 3% | 5 | 4% | 3 | 2% | 4 | 2% | 2 | 3% | 5 | 6% | 1 | 1% | 22 | 2% |
A long-standing illness | 12 | 15% | 10 | 8% | 22 | 12% | 30 | 16% | 18 | 26% | 15 | 17% | 26 | 19% | 133 | 16% |
Multimorbidity | 2 | 3% | 9 | 7% | 23 | 12% | 15 | 8% | 7 | 10% | 8 | 9% | 6 | 4% | 70 | 8% |
Other condition or disability | 7 | 9% | 11 | 9% | 22 | 12% | 28 | 15% | 2 | 3% | 14 | 16% | 19 | 14% | 103 | 12% |
No conditions or disabilities | 53 | 66% | 64 | 51% | 115 | 62% | 91 | 48% | 44 | 64% | 45 | 50% | 72 | 52% | 484 | 55% |
Care recipients’ characteristics | | | | | | | | | | | | | | | |
Age of CR | | 80 | 76.27 (18.72) | 125 | 73.97 (19.60) | 187 | 68.51 (20.66) | 189 | 65.99 (19.27) | 69 | 74.69 (14.48) | 90 | 64.72 (18.59) | 139 | 70.00 (19.43) | 879 | 69.78 (19.51) |
KATZ (ADL) score | | 80 | 2.83 (2.30) | 125 | 3.38 (2.40) | 187 | 2.25 (2.17) | 189 | 3.56 (2.08) | 69 | 2.20 (2.20) | 90 | 3.42 (2.27) | 139 | 2.81 (2.13) | 879 | 2.93 (2.28) |
Gender | Female | 62 | 78% | 75 | 61% | 107 | 57% | 74 | 40% | 43 | 63% | 29 | 32% | 56 | 40% | 446 | 51% |
Male | 18 | 23% | 49 | 40% | 80 | 43% | 113 | 60% | 25 | 37% | 61 | 68% | 83 | 60% | 429 | 49% |
Number of CR’s conditions | No physical/mental condition | 3 | 4% | 11 | 9% | 7 | 4% | 5 | 3% | 1 | 1% | 2 | 2% | 4 | 3% | 33 | 3% |
Single health condition | 38 | 48% | 45 | 36% | 98 | 52% | 69 | 37% | 22 | 32% | 35 | 39% | 42 | 30% | 349 | 40% |
| Multimorbidity | 39 | 49% | 69 | 55% | 82 | 44% | 115 | 61% | 46 | 67% | 53 | 59% | 93 | 67% | 497 | 57% |
Cross-country differences in study variables
Table
3 presents cross-country differences in the psychosocial variables. The description presented below is based on post hoc analyses using the Bonferroni test for multiple comparisons following the conducted ANCOVAs.
3
Extrinsic motivations
Extrinsic motivations were typically at a high level (maximum possible score = 35) although no statistically significant differences between the countries were detected in extrinsic motivations (p =.088).
Intrinsic motivations
Intrinsic motivations were lower in all countries than extrinsic motivations but were consistently at a moderate-high level (maximum possible score = 30). Caregivers in Sweden scored lower on intrinsic motivations than caregivers in the UK (p =.041, 95% C.I.=-3.59, − 0.03).
Willingness to provide nursing care
Willingness to provide nursing care was at a moderate-high level (maximum possible score = 5), lowest in Sweden, highest in Italy and with significant variation between countries. Caregivers in Sweden scored lower on willingness to provide nursing care than caregivers in: Greece (p =.001, 95% C.I.=-1.45, − 0.57), Israel (p =.001, 95% C.I.=-1.06, − 0.26), Italy (p =.001, 95% C.I.=-1.42, − 0.68), the Netherlands (p =.001, 95% C.I.=-1.28, − 0.55), Poland (p =.002, 95% C.I.=-1.02, − 0.12) and the UK (p =.001, 95% C.I.=-1.35, − 0.60). Caregivers in Italy scored higher on willingness to provide nursing care than caregivers in Israel (p =.009, 95% C.I.=0.05, 0.72), Poland (p =.003, 95% C.I.=0.09, 0.87). Also, caregivers in Poland scored lower on willingness to provide nursing care than caregivers in the UK (p =.046, 95% C.I.=-0.82, − 0.01).
Willingness to provide emotional care
Willingness to provide emotional care was moderate to high (maximum possible score = 5), the lowest in Poland, and the highest in the UK. Caregivers in Poland differed significantly to caregivers in Israel (p =.001, 95% C.I.=-0.87, − 0.06), the Netherlands (p =.001, 95% C.I.=-0.84, − 0.17) and the UK (p =.001, 95% C.I.=-0.83, − 0.17). The higher willingness to provide emotional care in the UK differed significantly to caregivers in Sweden (p =.029, 95% C.I.=0.01, 0.62). Similarly, caregivers in the Netherlands scored higher on willingness to provide emotional care than caregivers in Sweden (p =.019, 95% C.I.=0.02, 0.61).
Willingness to provide instrumental care
Willingness to provide instrumental care was moderate to high (maximum possible score = 5), with the lowest in Sweden, and the highest in the UK. Caregivers in Sweden scored lower on willingness to provide instrumental care than those in all other countries, i.e.: Greece (p =.001, 95% C.I.=-1.26, − 0.61), Israel (p =.001, 95% C.I.=-1.17, − 0.58), Italy (p =.001, 95% C.I.=-1.18, − 0.63), the Netherlands (p =.001, 95% C.I.=-1.02, − 0.47), Poland (p =.001, 95% C.I.=-0.98, − 0.31) and the UK (p =.001, 95% C.I.=-1.21, − 0.65).
Global willingness to provide care
Levels of overall willingness to provide care were moderate to high (maximum possible score = 5); again lowest in Sweden and highest in the UK. Caregivers in Sweden scored lower on global willingness than caregivers in Greece (p =.001, 95% C.I.=-0.97, − 0.33), Israel (p =.001, 95% C.I.=-0.88, − 0.30), Italy (p =.001, 95% C.I.=-0.95, − 0.41), the Netherlands (p =.001, 95% C.I.=-0.94, − 0.41), Poland (p =.020, 95% C.I.=-0.68, − 0.02) and the UK (p =.001, 95% C.I.=-1.00, − 0.45). Caregivers in Poland scored lower on global willingness than caregivers in Italy (p =.008, 95% C.I.=-0.61, − 0.04), the Netherlands (p =.022, 95% C.I.=-0.62, − 0.02) and the UK (p =.002, 95% C.I.=-0.67, − 0.07).
Table 3
Descriptive data for study variables and ANCOVA analyses
Extrinsic Motivations to Care | 28.33 (4.26) | 26.66 (5.23) | 27.99 (4.97) | 26.60 (5.31) | 27.53 (4.93) | 28.74 (4.67) | 28.06 (4.68) | 879 | 27.47 (5.04) | 2.97 | p =.088 |
Intrinsic Motivations to Care | 25.41 (3.88) | 24.50 (3.92) | 24.97 (4.21) | 25.06 (4.70) | 23.62 (5.15) | 23.85 (3.89) | 25.54 (3.59) | 879 | 24.78 (4.28) | 3.84 | p <.007** |
Willingness - nursing care | 4.32 (0.85) | 3.80 (1.02) | 4.44 (0.71) | 4.23 (0.96) | 3.93 (0.84) | 3.39 (0.83) | 4.35 (0.74) | 879 | 4.13 (0.92) | 15.22 | p <.001*** |
Willingness - emotional care | 4.29 (0.79) | 4.42 (0.61) | 4.38 (0.63) | 4.55 (0.68) | 4.04 (0.77) | 4.29 (0.77) | 4.57 (0.59) | 879 | 4.40 (0.69) | 6.63 | p <.001*** |
Willingness - instrumental care | 4.50 (0.62) | 4.34 (0.69) | 4.54 (0.58) | 4.36 (0.77) | 4.23 (0.71) | 3.74 (0.65) | 4.60 (0.52) | 879 | 4.38 (0.70) | 20.52 | p <.001*** |
Willingness - global score | 4.35 (0.67) | 4.19 (0.67) | 4.44 (0.52) | 4.39 (0.71) | 4.09 (0.65) | 3.80 (0.61) | 4.50 (0.48) | 879 | 4.29 (0.67) | 15.04 | p <.001*** |
Familial interconnectedness (RFS) | 27.60 (6.42) | 32.57 (6.29) | 29.27 (6.92) | 27.82 (6.16) | 29.33 (5.87) | 25.21 (6.72) | 29.17 (5.21) | 879 | 28.77 (6.58) | 9.85 | p <.001*** |
Extended family support (RFS) | 7.08 (3.02) | 8.14 (2.54) | 6.71 (3.01) | 5.92 (2.77) | 7.73 (2.95) | 4.82 (3.15) | 7.15 (2.44) | 879 | 6.77 (2.96) | 10.65 | p <.001*** |
Familial obligations (RFS) | 7.63 (2.98) | 8.23 (3.02) | 7.63 (3.19) | 6.31 (2.71) | 7.37 (3.39) | 5.64 2.87) | 7.30 (2.70) | 879 | 7.23 (3.08) | 7.75 | p <.001*** |
Familism (RFS total score) | 42.47 (11.11) | 48.80 (10.21) | 43.51 (11.32) | 39.58 (10.10) | 44.78 (10.35) | 35.70 (11.22) | 43.92 (8.52) | 879 | 42.74 (10.95) | 11.52 | p <.001*** |
Self-transcendence (PVQ-21) | 1.98 (0.64) | 2.2 (0.78) | 2.11 (0.73) | 2.24 (0.60) | 2.12 (0.63) | 2.31 (0.72) | 2.20 (0.79) | 879 | 2.18 (0.72) | 2.72 | p =.390 |
Self-enhancement (PVQ-21) | 4.05 (1.12) | 3.42 (1.00) | 3.65 (1.04) | 4.11 (0.98) | 4.24 (0.85) | 4.43 (0.86) | 4.32 (0.89) | 879 | 4.00 (1.03) | 8.79 | p =.001*** |
Presence of meaning (MLQ) | 24.75 (5.16) | 26.30 (5.59) | 23.50 (6.68) | 24.12 (5.20) | 23.65 (7.00) | 23.64 (6.71) | 22.77 (6.64) | 879 | 23.94 (6.24) | 2.87 | p =.004** |
Search for meaning (MLQ) | 23.28 (5.86) | 22.36 (7.58) | 19.55 (7.56) | 20.11 (6.17) | 25.44 (5.80) | 18.15 (7.44) | 17.64 (6.84) | 879 | 20.28 (7.32) | 9.30 | p =.001*** |
Illness threat (IPQ score) | 52.62 (8.55) | 52.87 (8.33) | 56.17 (9.48) | 56.73 (7.80) | 57.79 (9.82) | 57.81 (8.17) | 59.07 (8.75) | 879 | 56.30 (8.90) | 5.58 | p <.001*** |
Wellbeing (WHO-5 score) | 44.80 (23.80) | 60.73 (21.93) | 40.36 (22.71) | 52.35 (23.56) | 30.72 (22.19) | 43.86 (23.86) | 42.82 (23.40) | 879 | 46.01 (24.33) | 8.58 | p <.001*** |
Caregiver gains (GAINS score) | 10.63 (6.66) | 10.32 (6.60) | 10.81 (6.37) | 14.43 (6.25) | 11.60 (6.13) | 15.32 (6.21) | 16.51 (6.57) | 879 | 13.06 (6.77) | 15.01 | p <.001*** |
Health quality of life (EQ-5D-5 L utility index) | 0.81 (0.16) | 0.89 (0.11) | 0.71 (0.25) | 0.78 (0.19) | 0.84 (0.16) | 0.83 (0.12) | 0.80 (0.16) | 879 | 0.79 (0.19) | 6.07 | p <.001*** |
Burden (ZBI score) | 22.25 (9.53) | 16.68 (8.52) | 20.77 (8.88) | 18.43 (8.97) | 22.86 (9.12) | 23.90 (9.52) | 22.51 (9.17) | 879 | 20.66 (9.33) | 7.04 | p <.001*** |
Depression (CES-D score) | 12.13 (6.35) | 8.81 (5.63) | 12.77 (6.62) | 9.78 (5.62) | 13.91 (7.51) | 12.52 (6.17) | 12.61 (6.76) | 879 | 11.64 (6.49) | 5.07 | p <.001*** |
Familism
Familism varied across countries from a moderate level in Sweden to a higher, but still moderate, level in Israel (maximum available score = 84). Caregivers in all countries included in analysis
4 apart from the Netherlands scored higher on familism than caregivers in Sweden (GR,
p =.023, 95% C.I.=0.37, 11.21; IL,
p =.001, 95% C.I.=8.24, 18.11; IT,
p =.001, 95% C.I.=2.94, 12.09; PL,
p =.001, 95% C.I.=2.64, 13.78; UK,
p =.001, 95% C.I.=3.60, 12.83). Caregivers in Israel scored higher on familism than caregivers in Italy (
p =.001, 95% C.I.=1.48, 9.83), the Netherlands (
p =.001, 95% C.I.=5.33, 14.08), Greece (
p =.001, 95% C.I.=2.45, 12.31) and the UK (
p =.012, 95% C.I.=0.55, 9.37). Caregivers in Italy scored higher on familism than caregivers in the Netherlands (
p =.025, 95% C.I.=0.23, 7.85). Caregivers in the Netherlands scored lower on familism than caregivers in the UK (
p =.005, 95% C.I.=-8.72, − 0.765).
Familial interconnectedness
Familial interconnectedness levels were generally moderate (maximum possible score = 48), with the lowest level in Sweden and the highest in Israel, both still within moderate ranges. Caregivers in all countries scored lower on familial interconnectedness than caregivers in Israel (GR, p =.001, 95% C.I.=-8.50, -2.45; IT, p =.001, 95% C.I.=-6.10, − 0.98; NL, p =.001, 95% C.I.=-7.89, -2.53; PL, p =.009, 95% C.I.=-6.77, − 0.46; SE, p =.001, 95% C.I.=-10.46, -4.40; UK, p =.003, 95% C.I.=-6.06, − 0.66). Also, caregivers in Italy, Poland and the UK scored higher on familial interconnectedness than caregivers in Sweden (IT, p =.001, 95% C.I.=1.08, 6.69; PL, p =.013, 95% C.I.=0.40, 7.23; UK, p =.001, 95% C.I.=1.24, 6.90).
Family support
Levels of perceived family support ranged from the boundary between low and moderate, and moderate (maximum possible score = 16), with the lowest level seen in Sweden and the highest in Israel. Caregivers in all countries except the Netherlands (Greece, Israel, Italy, Poland and the UK) scored higher on family support than caregivers in Sweden (GR, p =.001, 95% C.I.=0.49, 3.40; IL, p =.001, 95% C.I.=1.83, 4.48; IT, p =.001, 95% C.I.=0.38, 2.83; PL, p =.001, 95% C.I.=1.06, 4.05; UK, p =.001, 95% C.I.=1.03, 3.50). Also, caregivers in Israel, Poland, and the UK scored higher on family support than caregivers in the Netherlands (IL, p =.001, 95% C.I.=1.08, 3.43; PL, p =.004, 95% C.I.=0.29, 3.01; UK, p =.002, 95% C.I.=0.29, 2.43). Caregivers in Israel scored higher on family support than caregivers in Italy (p =.001, 95% C.I.=0.43, 2.67).
Familial obligations
Levels of familism were moderate in all countries (maximum score = 20), with between-country differences seen. Caregivers in Sweden scored significantly lower on familial obligation than caregivers in Greece, Israel, Italy, and the UK (p =.003, 95% C.I.=0.34, 3.43; p =.001, 95% C.I.=1.32, 4.13; p =.001, 95% C.I.=0.79, 3.39; p =.002, 95% C.I.=0.34, 2.97; respectively). Caregivers in Israel and Italy scored higher on familial obligations than caregivers in the Netherlands (p =.001, 95% C.I.=0.79, 3.29; p =.001, 95% C.I.=0.31, 2.49; respectively).
Self-transcendence values
Levels of self-transcendence values were typically low (< 3 in a maximum score of 6), although highest in Sweden, and lowest in Greece. No statistically significant differences between the countries were detected in self-transcendence values (p =.390).
Self-enhancement values
Self-enhancement values were higher (> 3 in a maximum possible score of 6) than levels of self-transcendence values, with several between-country differences. Caregivers in Israel scored lower on self-enhancement values than caregivers in the Netherlands (p =.021, 95% C.I.=-0.85, − 0.03), Poland (p =.001, 95% C.I.=-1.18, − 0.21), Sweden (p =.001, 95% C.I.=-1.27, − 0.34) and the UK (p =.001, 95% C.I.=-1.09, − 0.26). Similarly, caregivers in Italy scored lower on self-enhancement values than caregivers in the Netherlands (p =.037, 95% C.I.=-0.72, − 0.01), Poland (p =.001, 95% C.I.=-1.07, − 0.17), Sweden (p =.001, 95% C.I.=-1.16, − 0.30) and the UK (p =.001, 95% C.I.=-0.97, − 0.23).
Presence of meaning
Caregivers reported moderate to high presence of meaning (maximum possible score = 35) with limited between-country variation apart from caregivers in Israel scoring higher on the presence of meaning than caregivers in the UK (p =.001, 95% C.I.=0.84, 6.10).
Search for meaning
Levels of searching for meaning were typically lower (maximum possible score = 35) than levels of the presence of meaning, with several between country differences. Caregivers in Poland scored higher on the search for meaning than caregivers in Italy (p =.001, 95% C.I.=2.48, 9.00), the Netherlands (p =.001, 95% C.I.=1.14, 8.05), Sweden (p =.001, 95% C.I.=2.55, 10.13) and the UK (p =.001, 95% C.I.=3.95, 10.82). Caregivers in the UK scored lower on the search for meaning than caregivers in Greece (p =.001, 95% C.I.=-8.74, -2.07), Israel (p =.001, 95% C.I.=-7.24, -1.24) and the Netherlands (p =.036, 95% C.I.=-5.49, − 0.07). Also, caregivers in Italy and Sweden scored lower on the search for meaning than caregivers in Greece (p =.004, 95% C.I.=-6.89, − 0.63; p =.006, 95% C.I.=-8.05, − 0.67; respectively).
Illness threat
Levels of perceived illness threat were typically moderate (maximum possible score = 80), although highest in the UK, and lowest in Greece and Israel. Caregivers in the UK scored significantly higher on perceived illness threat than caregivers in Greece (p =.001, 95% C.I.=2.23, 10.02), and Israel (p =.002, 95% C.I.=0.96, 7.97) and Italy (p =.001, 95% C.I.=0.93, 7.13). Caregivers in Sweden and Poland scored higher on perceived illness threat than caregivers in Greece (p =.005, 95% C.I.=0.82, 9.44; p =.044, 95% C.I.=0.05, 8.87). Caregivers in the Netherlands also scored higher on perceived illness threat than caregivers in Greece (p =.001, 95% C.I.=1.33, 8.99), Israel (p =.045, 95% C.I.=0.03, 6.99) and Italy (p =.042, 95% C.I.=0.04, 6.10).
Wellbeing
Wellbeing varied highly between countries, with the lowest reported in Poland and the highest in Israel. Wellbeing was low (i.e., below the cut-off score of ≤ 50) in Poland, Greece, Italy, Sweden, the UK, and normative (i.e., above the cut-off score of > 50) for Israel and the Netherlands. Caregivers in Israel reported higher wellbeing than caregivers in Greece (p =.001, 95% C.I.=3.65, 25.20), Italy (p =.001, 95% C.I.=5.46, 23.71), Poland (p =.001, 95% C.I.=13.43, 35.95), Sweden (p =.001, 95% C.I.=6.37, 27.94) and the UK (p =.001, 95% C.I.=6.45, 25.71). Caregivers in Poland scored lower on wellbeing than caregivers in the Netherlands (p =.001, 95% C.I.=-27.26, -5.11).
Gains
Reported gains of caregiving were low to moderate (maximum possible score = 30), ranging from 10.3 in Israel to 16.5 in the UK. Caregivers in the UK scored significantly higher on gains than caregivers in Greece (p =.001, 95% C.I.=3.09, 9.06), Israel (p =.001, 95% C.I.=3.84, 9.23), Italy (p =.001, 95% C.I.=3.31, 8.07) and Poland (p =.001, 95% C.I.=1.94, 8.11). Caregivers in the Netherlands reported significantly more gains than caregivers in Greece (p =.001, 95% C.I.=1.81, 7.70), Israel (p =.001, 95% C.I.=2.54, 7.89), Italy (p =.001, 95% C.I.=2.04, 6.70) and Poland (p =.005, 95% C.I.=0.61, 6.80). Similarly, caregivers in Sweden scored higher on gains than caregivers in Greece (p =.001, 95% C.I.=1.70, 8.40), Israel (p =.001, 95% C.I.=2.54, 8.57), Italy (p =.001, 95% C.I.=1.91, 7.50) and Poland (p =.005, 95% C.I.=0.64, 7.45).
Health-related quality of life was moderate to high (maximum possible score = 1), with Israel highest and Italy lowest. Caregivers in Israel scored higher on health quality of life than caregivers in Italy (p =.001, 95% C.I.=0.06, 0.21) and the Netherlands (p =.002, 95% C.I.=0.02, 0.18). Caregivers in Italy scored lower on the health quality of life than caregivers in Poland (p =.001, 95% C.I.=-0.20, − 0.03), Sweden (p =.010, 95% C.I.=-0.17, − 0.01) and the UK (p =.014, 95% C.I.=-0.15, − 0.01).
Burden
Levels of reported burden were low to moderate (maximum possible score = 48). The lowest levels in Israel differed significantly from the highest in Sweden (p =.001, 95% C.I.=4.11, 12.56), and Sweden also differed from Italy (p =.001, 95% C.I.=2.19, 10.03) and the Netherlands (p =.001, 95% C.I.=1.66, 9.41). Caregivers in Israel scored lower on burden than caregivers in Greece (p =.001, 95% C.I.=-9.64, -1.20) and the UK (p =.001, 95% C.I.=-9.28, -1.73).
Depression
Levels of depression were low to moderate (maximum possible score = 30), the lowest in Israel and the highest in Poland. Caregivers in Israel scored lower on depression than caregivers in Greece (p =.023, 95% C.I.=-6.04, − 0.20), Italy (p =.006, 95% C.I.=-5.39, − 0.44), Poland (p =.002, 95% C.I.=-6.90, − 0.79), Sweden (p =.001, 95% C.I.=-7.19, -1.34) and the UK (p =.001, 95% C.I.=-6.37, -1.14). Caregivers in Sweden scored higher on depression than caregivers in the Netherlands (p =.026, 95% C.I.=0.15, 5.52).
Discussion
This paper reports cross-country variations in caregiver experiences, focusing on rarely described caregiver motivations, willingness to care, cultural and personal values, meaning in life, perceived illness threat and caregiver experiences of wellbeing, gain, health-related quality of life, burden and depression. The study adopted an exploratory approach. Findings pertaining to variations across 6 European countries and Israel (included in ANCOVAs which controlled for several covariates, see Table
3 and footnote) are presented
5.
Cross-country variations in caregiver
motivations and
willingness to care have not been examined previously. The findings show that extrinsic and intrinsic motivations were at moderate-high levels in all countries with only limited between-country variation. The measure of motivations to provide care (see
Methods section) was created in the UK [
16], and was translated for the first time to other languages for the current study. Therefore, to draw comparisons, we can only refer to UK-based studies applying this scale [
16,
62,
63] and in each of these caregivers also scored on average moderate-high on extrinsic and intrinsic motivations for caring. These previous findings as well as our current findings are congruent with the proposal that extrinsic and intrinsic motivations are not mutually exclusive [
15], i.e., a high level of extrinsic motivations does not imply an absence nor a low level of intrinsic motivations and vice versa. Extrinsic and intrinsic motivations should be considered on two dimensions, and can co-exist.
Willingness to care (globally) and its components (nursing, emotional and instrumental willingness) were at moderate to high mean levels with cross-country variations observed. A general pattern found lower global willingness to care in caregivers in Sweden, the highest global willingness to care amongst caregivers in the UK, Italy, and the lowest levels of emotional willingness amongst caregivers in Poland. This difference between Poland and the rest of the countries in terms of emotional willingness could be considered in the context of Poland lacking a national policy to underpin caregiver support [
39,
40]. However, caregivers in Sweden, a country with potentially the most comprehensive and developed caregiver support system in our sample, reported significantly lower, albeit still moderate, mean levels of global willingness to care as compared with other countries. The dominant trend of policy reforms has been centred around an increasing shift of the responsibility of care from the state to caregivers [
2,
64], including Sweden [
65,
66]. Although noted for its well-developed caregiver support, the shift of responsibility of care to families coupled with cutbacks on social spending in Sweden [
66] may potentially explain their lower willingness to offer informal care as opposed to caregivers in other countries.
Between country differences in mean levels of
caregiver values (familism and personal values) could potentially be interpreted in the context of both cultural and policy differences existing between southern countries, for example Israel and Greece, and northern countries, such as Sweden or the Netherlands [
67,
68]. Caregivers in Sweden and the Netherlands reported lower mean levels of familism across all subscales (familial interconnectedness, family support, familial obligations) than caregivers in Israel. The highest level of familism (and subcomponents) reported in Israel may be due to the major significance ascribed to older people in this country’s religious tradition as well as to the presence of particular sources of stress such as for example recurrent wars that may play a role in strengthening family relations, family values and obligations [
69].
The mean levels of self-transcendence values were rather low across all countries; however, it is difficult to compare this finding with that of other studies as they do not exist. Self-enhancement values were typically higher across the national samples than self-transcendence values; the highest in Sweden, a country typically characterised by individualism, and much lower in Israel, a country characterised by collectivism [
43]. The differences here between northern and southern countries may reflect differences in health and social care systems underpinning caregiver support [
67,
68], yet in terms of the most notable difference between Sweden and Israel, where both countries are considered to provide high levels of statutory social care, we would tend to ascribe the difference more to cultural context rather than the availability of social care.
There was limited between-country variation in
the presence of meaning, with all countries reporting moderate to high levels of the presence of meaning. However, there was cross-country variation in
searching for meaning in life with caregivers from the poorer countries of Poland and Greece reporting the highest mean levels of the search for meaning in life, and the relatively wealthier UK reporting the lowest levels
6. This replicates general population patterns seen in the 132 countries represented in Gallup World Poll data [
24] although other cross-country comparisons of meaning in life have been limited [
70], e.g., by the inclusion of a small number of countries [
71], or the use of dichotomous single-items to assess meaning [
24]. The findings reported here are from seven countries using a validated meaning in life measure, are specific to caregivers, and thus add usefully to caregiving literature.
Studies of caregiver
illness beliefs (in terms of perceived threat) are limited and have not to date considered cross-country variations. In this study, the highest levels of perceived illness threat were noted in the UK and Sweden, countries scoring high on individualism characteristics [
44]. In contrast, the lowest levels of perceived illness threat were reported in Israel and Greece, the most collectivist countries in our sample [
44]. Israeli caregivers also scored highest on familism and filial obligations which are particularly dominant values in collectivist cultures [
72]. Previous studies have shown that caregivers from collectivist cultures tend to ground their illness beliefs in familial values, e.g., they ascribe the potential illness threat more to family stress, worry, pressure, wrongdoing, and family discord rather than to the physical/mental damage caused by illness [
72,
73].
7 However, the extent to which differences in illness perceptions can truly be ascribed to culture is not clear given the range of other potential influences presented here and elsewhere [e.g.,
69].
Caregiver experiences of
wellbeing,
gain,
health-related quality of life,
burden and
depression have rarely been studied from a cross-national perspective [
10,
68]. To begin with, the low level of caregiver
wellbeing found across most of the countries in our study is consistent with previous studies which have reported that caregivers have low levels of wellbeing and lower than non-caregivers [
2,
75]. Caregivers from Poland reported the lowest mean levels of wellbeing, and those from Israel reported the highest mean levels. Caregivers in Israel also reported the highest mean levels of health-related quality of life. Although both countries (Poland and Israel) are family-based countries [
10,
12], the national caregiver support policies may be influential here, with Israel’s higher commitment to supporting caregivers translating to better wellbeing than in Poland, where caregiver support is underdeveloped [
39,
40,
76].
8
On average, north-western countries reported higher mean levels of
gains than south-eastern countries. This finding appears congruent with the pattern of differences in health/social care systems underpinning caregiver support between north-west and south-east of Europe [
67,
68]. That is, higher provision of caregiver support may be reflected in higher levels of reported gains [
10]. Interestingly, however, Israeli caregivers comprise an exception having reported lowest mean levels of gains. It may be that a culturally prescribed value of caregiving in Israel condition these caregivers to see their caregiving as obligatory rather than beneficial and meaningful to them [
76]. Israeli caregivers may perceive their duty to care as an important value, and do not expect to ‘gain’ from their role. For example, the most frequent reasons for caregiving in Israel were wanting to help and commitment to care [
77].
Cross-country variations were seen in mean levels of
burden and
depression with caregivers from Sweden and Poland reporting higher mean levels of burden and depression, and caregivers from Israel reporting lower mean levels. As far as higher mean levels of burden and depression in Poland can be ascribed to limited support for caregivers in this country [
39,
40], high mean levels of burden and depression in Sweden were unexpected and there are no existing comparator studies with a Swedish sample to aid interpretation of this finding. Caregivers in Sweden have reportedly been negatively impacted by significant cutbacks in social care services in the last two decades [
40,
66], where reductions in nursing and residential care and cutbacks in other social care services are shown to have had negative repercussions for caregivers [
65,
66]. This may explain why caregivers in Sweden report more negative consequences of their role in the current findings. A cross-national study comparing adult caregivers in Nordic countries (e.g., Sweden) and Continental/Southern countries showed that the latter group reported greater levels of self-realisation and satisfaction [
68]. However, it should be mentioned that mean levels of caregiver burden and depression were still relatively low to moderate in the current study in comparison to other published data [
78,
79], and congruent with a more recent multinational study on informal care [
5].
Implications of findings
The findings suggest that potential psychological and social care interventions targeting various caregiver variables (e.g., caregiver wellbeing) may need to consider countrycontext, as countries may differ or be similar with regards to levels of such variables. Different countries may require different or similar approaches. For example, high levels of perceived threat in Sweden and the UK, low levels of emotional willingness to care in Poland warrant more attention for within-country future studies and potential interventions. Future cross-country research is needed to establish what works best for which country or countries.
Appropriate support measures should be accessible to all caregivers to promote their wellbeing and alleviate burden and depression. Our data indicates that countries with underdeveloped caregiver support systems (e.g., Poland) tend to have higher negative caregiver experiences compared to countries with more developed support systems (e.g., the Netherlands). This highlights the importance of addressing caregiver support in European policy agendas. National differences in social protection systems, the amount of benefits, and differences in gender perceptions contribute to variations in caregiver experiences (e.g., of burden or wellbeing) [
40]. The findings further suggest that the effectiveness of caregiver support, particularly in enhancing positive caregiver wellbeing, gains and health-related quality of life, may depend on the pattern of family values in society (cultural and personal values).
In terms of future implications for research, further cross-country comparative studies are required to more fully examine the potential relation between polices underpinning caregiver support and caregiver motivations, willingness, cultural and personal values, meaning processes, perceived illness threat, and the variety of other experiences (e.g., wellbeing, burden). These findings further highlight the importance of collecting cross-country samples to better understand their experience. A separate paper will present results pertaining to the relationships between these variables.
Strengths and limitations
The strength of the study lies in the large amount of descriptive data collected from a diverse sample of caregivers using validated measures across seven countries with differing care systems and differing cultural attitudes around informal care. This diversity likely enhances the generalisability of the results. The response rate achieved in the survey was good, i.e., greater than 40%, which is higher than the average response rate for web-based cohort surveys [
80]. In presenting cross-country similarities and differences. ANCOVA tests controlled for many possible confounders, increasing our confidence in the between-country differences that emerged.
Several limitations should be acknowledged. Firstly, the cross-sectional nature of the data restricts causal interpretations, although it allows for detailed cross-country analysis of important psychosocial variables. Secondly, between-country variations may be influenced by sampling differences, including variations in sample size and characteristics such as age, employment status, care experience, time spent caregiving, and intensity of care. Statistical tests controlled for the effect of these (and other) potential confounders to increase the likelihood that any differences could be attributed to the caregiver’s country of residence. However, due to an inadequate level of available research support in Germany and Ireland (that resulted in low
N = 25 and
N = 42, respectively), these countries were excluded from the ANCOVAs– decreasing the number of compared countries from nine to seven. Thirdly, the small sample sizes in each country limited the possibility of detailed country-specific analyses. Fourth, considering the dearth of cross-country studies in informal care, particularly in relation to the variables examined in the current study, the scope for comparisons with other cross-country studies was correspondingly limited. The study adopted an exploratory approach. Fifth, it is crucial to recognise that participants with certain demographics, particularly informal caregivers with limited access to the Internet and lower digital literacy, may have been excluded from participation in the web-based survey such as the ENTWINE-iCohort, potentially introducing bias into the study findings [
81]. Addressing this limitation remains a challenge in research involving web-based methodologies [
82]. Finally, generalisability of the findings is limited by the predominantly female and highly educated caregiver sample, which may introduce bias into our findings. However, the consistent overrepresentation of women in informal care studies [
83,
84] reflects their actual predominant role in providing informal care, as seen in European statistics [
85].