Informal 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.
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.
Given the aging population and increasing life expectancy, the need on the part of older and ill populations for long-term care has risen rapidly (Roth et al., 2015). As a result, unpaid informal care is becoming even more important for health and social care delivery worldwide. Informal care refers to the provision of unpaid care to a relative or friend with a chronic illness, disability, or other long-lasting health needs (Revenson et al., 2016). A substantial body of literature has documented the psychosocial and physical consequences of the caregiving role. Recent studies have reported caregiver burden and strain as a multidimensional response to the psychological, physical, and financial stressors associated with the caregiving experience (Chiao et al., 2015; Faronbi et al., 2019). Emotional distress, anxiety, and impaired self-care are also commonplace among caregivers, attributed to the caregiving demands engendered by the care recipient's illness (Schulz et al., 2008; Bauer and Sousa-Poza, 2015). The increased mobilization of our society and globalization of the workplace have resulted in additional challenges for many of these informal caregivers, especially adult children of aging parents; that is, difficulties that stem from living far away from the care recipients (Baldock, 2000; Bevan and Sparks, 2011). It is estimated that ∼15-20% of all informal caregivers are distance caregivers (DCGs) (Douglas et al., 2016). The reasons for the geographic distance might include career or education, military deployment, divorce, or a simple life choice (Stafford, 2004). DCGs engage in many supportive activities to meet the needs of their loved ones, such as assisting with financial and bureaucratic issues, providing social and emotional support, and even performing practical and nursing tasks, which, naturally, are more difficult to perform from a geographic distance (Parker et al., 2006; Cagle and Munn, 2012). In fact, nearly three quarters of DCGs assist with instrumental activities of daily living (IADLs), such as managing medications, arranging transportation, doing housework, and coordinating care with the local support of family, friends, or paid carers (Koerin and Harrigan, 2015). Despite the above, current research on the unique needs and experiences of DCGs is limited. In the few studies conducted, DCGs have reported feelings of anxiety, stress, helplessness, and guilt related to their geographic distance from the care recipient (Schoonover et al., 1988; Mazanec, 2009). Experiencing the added stressors associated with caring from a distance, DCGs have also reported higher levels of uncertainty, inadequacy, and distress, especially if their resources for travel are limited (Harrigan and Koerin, 2007; Douglas et al., 2016). The National Alliance for Caregiving and American Association of Retired Persons survey (National Alliance for Caregiving/American Association of Retired Persons, 2004) revealed a critical association between caring from a geographic distance and stress, with 47% of caregivers who lived ...
IntroductionDistance 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 analysisThis 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 disseminationEthical 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 numberCRD42020156350.
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.
Informal caregivers are at risk of caregiver burden, and physical proximity to the care recipient may add to this negative outcome. Yet, individual differences in emotional proximity to the care recipient such as attachment orientations may contribute to caregivers’ comfort towards different degrees of physical proximity, leading to varying levels of burden. The current study is the first to explore the role of physical proximity on caregiver burden as moderated by attachment orientations. A sample of 162 Israeli caregivers who are active users of the Camoni website completed our online survey. Sociodemographic characteristics, including a self-reported questionnaire on the physical proximity to the care recipient, were collected. Caregivers’ attachment orientations were assessed with the Experiences in Close Relationships–Relationship Structures questionnaire. Caregiver burden was assessed using the Caregiver Burden Inventory. Multiple regression and simple slope analyses were conducted. Attachment anxiety and avoidance were positively associated with burden, whereas physical proximity was not. Attachment avoidance, but not attachment anxiety, moderated the association between physical proximity and caregiver burden, with caregivers who live closer to their care recipient experiencing greater burden when high levels of avoidance were present. Our findings reveal the complex dynamics between attachment orientations and physical proximity in the context of informal care, highlighting the need for better integration of these two interlinked constructs in both care research and practice.
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