1. Why do they care? : using mixed methods to explore adult informal caregivers' motivations and willingness to provide care
- Author
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Zarzycki, Mikołaj, Morrison, Valerie, and Seddon, Diane
- Subjects
informal caregiving ,motivations to provide care ,willingness to provide care ,values ,culture ,society ,caregiver outcomes ,systematic reviews ,interpretative phenomenological analysis (IPA) ,ENTWINE-iCohort - Abstract
Informal caregiving is crucial to the sustainability of health and social care systems globally. With ageing populations, a rising prevalence of acute and chronic health conditions and increased migration, the need for informal care is growing, making it important to understand what motivates adult individuals to provide informal care. Against this background, this doctoral thesis explored motivations and willingness to provide care, the underlying factors that shaped them, and how these factors, and caregiver motivations and willingness themselves, related to positive and negative caregiver outcomes. The thesis is comprised of three review chapters and three empirical chapters, making use of mixed methodologies (qualitative and quantitative) to address the research questions. A qualitative meta-synthesis of 105 studies identified micro and macro determinants underlying motivations and willingness to provide care. The meta-synthesis of micro influences on motivations and willingness to care highlighted relational, personal, and contextual factors such as reciprocity, affection, caregiving obligations or situational aspects of caregiving. A systematic review of macro influences highlighted cultural and societal motivations, for example cultural values and social norms that shaped motivations and willingness to provide care. To better understand how such cultural factors shape motivations and willingness to provide care, an in-depth metaethnographic review of 37 studies was conducted. This review addressed the question of 'how' culture shapes motivations and willingness to provide care. Illustrating the possible interactions between ethnocultural factors, a model was developed that explained cultural underpinnings of motivations and willingness to provide care. Cultural self-identity, typically arising from socialisation processes, was generated as an overarching explanatory theme in this model. To gain a fuller understanding of caregiver motivations, and how these relate to values and to the challenges and gains of caregiving, the first empirical study (N=8) employed qualitative methods (Photovoice and Interpretative Phenomenological Analysis). A broad range of psychological and social caregiver motivations were identified, showing that caregiver motivations were underpinned by caregiver values and shaped by caregiver responses to specific challenges and gains of caregiving. Changes in caregiving motivations over time were hinted at in caregivers' accounts and these were noted. The cultural value of familism, personal values, meaning processes and illness perceptions, all of which were identified in the qualitative meta-synthesis as underpinning motivations and willingness to provide care, were next explored in quantitative analyses. Analysing data from a multinational survey with informal caregivers, the ENTWINE-iCohort, an examination of cross-country differences in key cognitive and psychosocial variables across 8 European countries and Israel was conducted (N=946). The between-country differences in these key variables, and in caregiver outcomes were likely related to differences in health and social care systems and/or to intrinsic cultural differences. Subsequently, the analysis of this dataset was extended to investigate whether any effect of caregiver values, meaning in life and illness threat on caregiver outcomes was mediated by caregiver motivations and/or willingness, and whether this effect was further moderated by caregiver's perceived choice in providing informal care (N=907-912). Motivations/willingness for caring mediated the relationship between independent and outcome variables, however the perception of choice in assuming the caring role did not moderate these associations. The findings of this thesis highlight the need to assess caregiver motivations, willingness to care, caregiver choice, and caregiver needs in a culturally sensitive manner and at repeated time points, in order to better inform healthcare and social care policy and practice, and the delivery of caregiver support. The findings and the recommendations for policy and practice are of international relevance for countries where the need to support caregivers is well established and for countries where support for caregivers is underdeveloped.
- Published
- 2023