ESR1: Prevalence of care and cultural differences

Objectives: to assess the willingness to perform specific care tasks in diverse groups of caregivers with different beliefs regarding caregiving (i.e., filial obligation and familism) across Europe.

The proportion of informal caregivers who would describe themselves as ‘willing’ to provide care for the person they are currently providing care for is unknown. Care tasks are varied and may include, for example, emotional, practical and nursing tasks. It cannot be assumed that willingness is equivalent across all these tasks. Since cultural values and beliefs have been found to play a significant role in shaping the way caregiving is manifested and perceived, they are likely to also affect willingness to care. Secondly, although research in informal caregiver outcomes is prevalent, there is limited research concerned with the impact of willingness on informal caregiver outcomes, including informal caregiver perceived burden or gains, quality of care, work participation. Knowledge about potential consequence of willingness (or lack of it) in populations with diverse cultural backgrounds can usefully inform the designing and implementation of carer solutions. Furthermore, the identification of the key pathways through which willingness to care might affect caregiving outcomes and caregiver behaviours (including potentially neglect or abuse) is necessary if future services and policy are to address relevant factors that enhance outcomes of both the informal caregiver and the care recipient. The ESR shall address these questions using mixed methods, combining quantitative (i.e., data from the ENTWINE-iCohort study) and qualitative methods of assessment over time of informal caregivers stratified by condition type, identifying willingness, processes and outcomes of care, incorporating questionnaire methods and also innovative photovoice story-telling methods. The empirical methods shall be informed by an initial systematic review and meta-synthesis.

Expected Results

We will be able to estimate the willingness to provide specific care tasks for diverse groups of informal caregivers across Europe. We will have insight into the consequences of willingness or lack thereof. This will help us to identify which type of support is necessary for whom and tailor it to caregivers' cultural values and norms.

Publications

Bei, E., Morrison, V., Zarzycki, M., & Vilchinsky, N. (2023). Barriers, facilitators, and motives to provide distance care, and the consequences for distance caregivers: a mixed-methods systematic review. Social Science & Medicine, 115782.

Zarzycki, M., Seddon, D., & Morrison, V. (2022) Informal caregiver motivations, values, challenges and gains: A photovoice and interpretative phenomenological analysis of interrelationships. Journal of Health Psychology, 1-15. https://doi.org/10.1177/135910532211246

Zarzycki, M., Seddon, D., Bei, E., Dekel, R., & Morrison, V. (2022). How Culture Shapes Informal Caregiver Motivations: A Meta-Ethnographic Review. Qualitative Health Research, 32(10), 1574-1589. https://doi.org/10.1177/10497323221110356

Zarzycki, M., Seddon, D., Bei, E., & Morrison, V. (2022). Why do they care? A qualitative systematic review and meta-synthesis of informal caregiver personal and relational motivations to provide care. Health Psychology Review 10.1080/17437199.2022.2058581

Morrison, V., Zarzycki, M., Vilchinsky, N., Sanderman, R., Lamura, G., Fisher, O., Ferraris, G., Elayan, S., Buskens, E., Bei, E., ... & Hagedoorn, M. (2022). A Multinational Longitudinal Study Incorporating Intensive Methods to Examine Caregiver Experiences in the Context of Chronic Health Conditions: Protocol of the ENTWINE-iCohort. International journal of environmental research and public health, 19(2), 821.https://doi.org/10.3390/ijerph19020821

Zarzycki, M., Morrison, V., Bei, E., & Seddon, D. (2022). Cultural and societal motivations for being informal caregivers: A qualitative systematic review and meta-synthesis. Health Psychology Review, 1-201. https://doi.org/10.1080/17437199.2022.2032259

Bei, E., Zarzycki, M., Morrison, V., & Vilchinsky, N. (2021). 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. BMJ Open, 11(7), e045660. http://dx.doi.org/10.1136/bmjopen-2020-045660

Zarzycki, M., & Morrison, V. (2021). Getting back or giving back: understanding caregiver motivations and willingness to provide informal care. Health Psychology and Behavioral Medicine, 9(1), 636-661. https://doi.org/10.1080/21642850.2021.1951737

Zarzycki, M., Morrison, V., & Seddon, D. (2019). Determinants of motivations to care and willingness to care in informal caregiving: a mixed-method systematic review. PROSPERO, CRD42019149458 Available from: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42019149458