Cross-country Variations in the Caregiver Role: Evidence from the ENTWINE-iCohort Study

Overview

Journal BMC Public Health

Publisher Biomed Central

Specialty Public Health

Date 2024 Mar 27

PMID 38532418

Authors

Mikolaj Zarzycki

Noa Vilchinsky

Eva Bei

Giulia Ferraris

Diane Seddon

Val Morrison

Affiliations

Soon will be listed here.

Abstract

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.

Citing Articles

Societal Costs of Dementia: 204 Countries, 2000-2019.

Lastuka A, Bliss E, Breshock M, Iannucci V, Sogge W, Taylor K J Alzheimers Dis. 2024; 101(1):277-292.

PMID: 39150827 PMC: 11380273. DOI: 10.3233/JAD-240163.

References

Quinn C, Clare L, McGuinness T, Woods R . The impact of relationships, motivations, and meanings on dementia caregiving outcomes. Int Psychogeriatr. 2012; 24(11):1816-26. DOI: 10.1017/S1041610212000889. View

Katz R, Gur-Yaish N, Lowenstein A . Motivation to provide help to older parents in Norway, Spain, and Israel. Int J Aging Hum Dev. 2011; 71(4):283-303. DOI: 10.2190/AG.71.4.b. View

Miller W, Anton H, Townson A . Measurement properties of the CESD scale among individuals with spinal cord injury. Spinal Cord. 2007; 46(4):287-92. DOI: 10.1038/sj.sc.3102127. View

Dempster M, Howell D, McCorry N . Illness perceptions and coping in physical health conditions: A meta-analysis. J Psychosom Res. 2015; 79(6):506-13. DOI: 10.1016/j.jpsychores.2015.10.006. View

Losada A, Marquez-Gonzalez M, Knight B, Yanguas J, Sayegh P, Romero-Moreno R . Psychosocial factors and caregivers' distress: effects of familism and dysfunctional thoughts. Aging Ment Health. 2010; 14(2):193-202. DOI: 10.1080/13607860903167838. View

Morrison V, Zarzycki M, Vilchinsky N, Sanderman R, Lamura G, Fisher O . A Multinational Longitudinal Study Incorporating Intensive Methods to Examine Caregiver Experiences in the Context of Chronic Health Conditions: Protocol of the ENTWINE-iCohort. Int J Environ Res Public Health. 2022; 19(2). PMC: 8775526. DOI: 10.3390/ijerph19020821. View

Schafer J, Graham J . Missing data: our view of the state of the art. Psychol Methods. 2002; 7(2):147-77. View

Knight B, Sayegh P . Cultural values and caregiving: the updated sociocultural stress and coping model. J Gerontol B Psychol Sci Soc Sci. 2009; 65B(1):5-13. DOI: 10.1093/geronb/gbp096. View

Anderson A . Europe's Care Regimes and the Role of Migrant Care Workers Within Them. J Popul Ageing. 2012; 5(2):135-146. PMC: 3356516. DOI: 10.1007/s12062-012-9063-y. View

10.

Quinn C, Clare L, Woods R . The impact of motivations and meanings on the wellbeing of caregivers of people with dementia: a systematic review. Int Psychogeriatr. 2009; 22(1):43-55. DOI: 10.1017/S1041610209990810. View

11.

Kaschowitz J, Brandt M . Health effects of informal caregiving across Europe: A longitudinal approach. Soc Sci Med. 2016; 173:72-80. DOI: 10.1016/j.socscimed.2016.11.036. View

12.

Graham J . Missing data analysis: making it work in the real world. Annu Rev Psychol. 2008; 60:549-76. DOI: 10.1146/annurev.psych.58.110405.085530. View

13.

Yu D, Cheng S, Wang J . Unravelling positive aspects of caregiving in dementia: An integrative review of research literature. Int J Nurs Stud. 2017; 79:1-26. DOI: 10.1016/j.ijnurstu.2017.10.008. View

14.

Moon H, Haley W, Rote S, Sears J . Caregiver Well-Being and Burden: Variations by Race/Ethnicity and Care Recipient Nativity Status. Innov Aging. 2020; 4(6):igaa045. PMC: 7679974. DOI: 10.1093/geroni/igaa045. View

15.

Lamura G, Mnich E, Nolan M, Wojszel B, Krevers B, Mestheneos L . Family carers' experiences using support services in Europe: empirical evidence from the EUROFAMCARE study. Gerontologist. 2009; 48(6):752-71. DOI: 10.1093/geront/48.6.752. View

16.

Aranda M, Knight B . The influence of ethnicity and culture on the caregiver stress and coping process: a sociocultural review and analysis. Gerontologist. 1997; 37(3):342-54. DOI: 10.1093/geront/37.3.342. View

17.

Oishi S, Diener E . Residents of poor nations have a greater sense of meaning in life than residents of wealthy nations. Psychol Sci. 2013; 25(2):422-30. DOI: 10.1177/0956797613507286. View

18.

Ar Y, Karanci A . Turkish Adult Children as Caregivers of Parents with Alzheimer's Disease: Perceptions and Caregiving Experiences. Dementia (London). 2017; 18(3):882-902. DOI: 10.1177/1471301217693400. View

19.

Tur-Sinai A, Teti A, Rommel A, Hlebec V, Lamura G . How Many Older Informal Caregivers Are There in Europe? Comparison of Estimates of Their Prevalence from Three European Surveys. Int J Environ Res Public Health. 2020; 17(24). PMC: 7767284. DOI: 10.3390/ijerph17249531. View

20.

Karademas E, Zarogiannos A, Karamvakalis N . Cardiac patient-spouse dissimilarities in illness perception: Associations with patient self-rated health and coping strategies. Psychol Health. 2010; 25(4):451-63. DOI: 10.1080/08870440802652089. View