Introduction
Due to increasing numbers of older people, urbanisation, the One-Child Policy and the increase in the number of women in employment, there are growing concerns regarding the sustainability of traditional family-based care-giving in China. Considering cultural values such as filial piety, offspring often feel obligated to care for their parents as they grow older. Even though there is extensive research on the increasing need for care as the Chinese population ages, to the best of our knowledge, there has been no recent review drawing together research on stressors and coping mechanisms of Chinese care-givers of older relatives who are living with long-term conditions.
Care-giving and existential issues
The current population aged 60 and above in China is about 230 million, with an expected increase to 490 million by 2050. Likewise, for those aged 80 and above, there is an expected increase from 25 million to about 121 million in the same timeframe (United Nations, 2019). With increasing life-expectancy, there will be increased numbers of older people living with adverse health conditions (Hua et al., Reference Hua, Fan, Li, Chen, Chen, Chen, Guo, He, Hu, Jiang, Li, Li, Li, Li, Li, Ma, Pi, Song, Sun, Wang, Wang, Wu, Wu, Xie, Yang and Yang2019) and multi-morbidities (Wang et al., Reference Wang, Wang, Wong, Wong, Li, Wang, Zhou, Zhu, Griffiths and Mercer2014), who are likely to require support. China's increasing population of older people with health conditions is predominantly supported through care provided by family members (Zhu and Walker, Reference Zhu and Walker2018), sometimes referred to as ‘informal care’. In the absence of robust integrated health and social systems, these care-givers must, of necessity, fend for themselves (Mayston et al., Reference Mayston, Lloyd-Sherlock, Gallardo, Wang, Huang, De Oca V, Ezeah, Guerra, Sosa, Liu, Uwakwe, Guerchet and Prince2017). Research shows that caring poses a number of stressors and existential issues for family care-givers (Kristanti et al., Reference Kristanti, Engels, Effendy, Astuti and Vernooij-Dassen2018, Reference Kristanti, Effendy, Utarini, Vernooij-Dassen and Engels2019; Tang, Reference Tang2020). Also, the unique cultural context of China, with the clear expectation that offspring care for parents, has implications for the way care-givers appraise their role. Stressors in the Chinese context may be changing as a result of societal changes, e.g. Zhang et al. (Reference Zhang, Clarke and Rhynas2020) showed that offspring of older relatives felt isolated and disconnected from their communities, especially with younger generations moving to other cities for schooling or employment and becoming estranged from the sense of ‘home’.
Societal values lead care-givers to have high expectations of themselves in relation to their fulfilment of their role, and care-giving stress occurs when there is a perceived mismatch between role performance and ideal role identity or role aspirations (Montgomery and Kosloski, Reference Montgomery and Kosloski2009). Factors such as self-efficacy (Crellin et al., Reference Crellin, Orrell, McDermott and Charlesworth2014), meanings and the motivations attributed to care-giving (Quinn et al., Reference Quinn, Clare and Woods2010), have implications for care-givers’ idiosyncratic views, role adjustment and their social behaviour over time. In the Chinese context, when, for example, a care-giver feels weary from having no break from care responsibilities or feels guilt for parents’ negative experiences in nursing homes, there will be stress from the discrepancy between their experience and their ideal role identity as a good and dutiful care-giver.
With reference to the process of care-giving within a social context, McAllum et al. (Reference McAllum, Simpson, Unson, Fox and Kilpatrick2021) found that taking on a care-giving role involved three aspects, all of which would be affected by culture, namely role acculturation, i.e. getting used to the new role; role negotiation and identification, i.e. care-givers adapting to care demands within the scope of their own life; and role learning, i.e. care-givers acquiring expertise from health and social care professionals as well as co-care-givers. As care for an older person with progressive needs for support intensifies over time, incongruence between a care-giver's performance and aspirations, levels of care-giving and the nature of support can have adverse implications for role identity. Therefore, factors such as low levels of service support, poor service organisation, care-givers’ lack of awareness around their own needs and having to deal with guilt at times when they are unable to manage care demands (Oliveira et al., Reference Oliveira, Zarit and Orrell2019), result in the personal health needs of care-givers remaining largely unmet (Queluz et al., Reference Queluz, Kervin, Wozney, Fancey, McGrath and Keefe2020).
While extensive literature is available on the care-giving process and the implications for care-givers in developed countries, there is a dearth of equivalent research in China, particularly due to the fact that the nation had a very limited time before transitioning into an ageing society when compared to developed countries like Australia, the United Kingdom (UK) and the United States of America (United Nations Department of Economic and Social Affairs, Population Division, 2015). Existing studies have predominantly focused on the influence of shared values and traditions on care-giving, i.e. they have adopted an essentialist view of culture. The above overview indicates that the individual context is also influential. Therefore, in this review, we pay attention to the fact that care-giving context varies from one care-giver to another and include consideration of existential issues.
Culture and demographic transitions
A prime Confucian virtue amongst Chinese people is filial piety Xiao (孝). This is the obligation of offspring to care for and support their parents, symbolised by showing respect, being obedient, and providing emotional and financial assistance (Smith and Hung, Reference Smith and Hung2012). Xiao promotes a strong sense of cultural identity and family cohesiveness (Park and Chesla, Reference Park and Chesla2007). It plays a significant role in shaping parent–child relationships, thereby informing patterns of care for older people within Chinese communities (Simon et al., Reference Simon, Chen, Chang and Dong2014). The filial support contract, which mandates offspring to oblige their parents (Serrano et al., Reference Serrano, Saltman and Yeh2017), reinforces the need for family members to look after their own and equally acts as a central endorsement of Confucianism values. Collectivism, where there is interdependence on others with emphasis on fulfilment of social roles, comes with a set of values, attitudes and behaviours. Cultural context impacts on the social resources that are accessible to individuals and, as such, in collectivist societies, people tend to have an external locus of control and are highly influenced by the demands of their environment (Xiao et al., Reference Xiao, Wang, He, De Bellis, Verbeeck and Kyriazopoulos2014). This may explain why care for older people mostly takes place at home and may contribute to low rates of uptake of primary care services (Wu and Lam, Reference Wu and Lam2016).
In a cross-sectional study with Chinese adult immigrants in Chicago, who were primary care-givers of older relatives, a stronger sense of filial obligation was significantly linked with reduced levels of developmental, emotional, social and physical burden (Guo et al., Reference Guo, Kim and Dong2019). Conversely, when expected levels of filial piety were not enacted, this was found to be a significant risk factor for suicidal ideation in older people (Simon et al., Reference Simon, Chen, Chang and Dong2014) and depressive symptoms in offspring care-givers (Guo et al., Reference Guo, Zhang, Ma, Sha, Yi, Zhang, Wang and Wang2015). In the context of a collectivist society, the societal expectation that the younger generation will address the needs of the older generation can be a ‘double edged sword for their mental health’ (Guo et al., Reference Guo, Steinberg, Dong and Tiwari2018: 1448). Individuals may feel under pressure to demonstrate willingness to care for their parents and may suppress feelings of stress or struggle (Au, Reference Au2017). In this context, care-givers of older relatives may perceive themselves to be in a liminal position, i.e. performing care-giving duties that relate to a multiplicity of cultural functions, which can cause them to struggle with their personal identities or role proficiency. The obligation to continue to care in a context of exhaustion or lack of willingness could result in a sense of detachment.
A one-child policy was implemented in China in the late 1970s, as a response to a projected population growth, and rescinded in 2015. This policy has reduced the number of children available to support ageing parents. In addition, issues which challenge care for older people include the acceleration of internal migration from rural to urban areas, which puts geographical distance between generations of the same family, and the cost of care provision which is unaffordable to many (Lin, Reference Lin2019). Arguably, given China's long history of patrilineality, perhaps one of the unintended consequences of the one-child policy is that women who were home-based by virtue of tradition are now able to achieve greater social equality, due to their improved status within the workforce. Warmenhoven et al. (Reference Warmenhoven, Hoebink and Janssens2018) found that women born after 1978 did not subscribe to norms of patrilineality in comparison to other groups, including men born after 1978. Further, Warmenhoven et al. found that, given the skewed sex ratio at birth as a result of the one-child policy, many parents are of the opinion that sons (with a future wife) are in a better position to provide care in comparison to daughters (with a future husband). Therefore, with reference to the rapid societal development of China, Zhou (Reference Zhou2019) highlighted problems with the traditional model of care, noting its adverse impact on ageing well and on care-givers. Zhou suggested that the Chinese government has a significant role to play in the development of interventions aimed at promoting contemporary ageing services.
Authors’ positionality
Burhanullah and Munro (Reference Burhanullah and Munro2020) propounded that socio-demographic transitions in Asian countries would have implications for care-givers and the appraisal of their role. Thus, embracing the prospect of uncovering various understandings, the philosophy underpinning this study is that the phenomenon of caring for older relatives is rooted in subjectivist epistemological and relativist ontological foundations. It is timely to move away from global constructs of collectivism and individualism, to focus on understanding individual appraisal of stressors and coping, within a specific cultural context. As such, care-givers construe their own meanings and understanding within the context of resources afforded to them within their cultural environment.
Aims
Drawing on the socio-cultural model of stress and coping (Aranda and Knight, Reference Aranda and Knight1997), it may be that the socio-demographic changes, in context of the value placed on filial piety (Xiao), negatively affect the wellbeing of those caring for older relatives. This makes it imperative to understand specific stressors and coping mechanisms. The objective of this review was to identify systematically what is known about stressors and coping mechanisms. Adopting the iterative approach outlined by Tricco et al. (Reference Tricco, Lillie, Zarin, O'Brien, Colquhoun, Levac, Moher, Peters, Horsley, Weeks, Hempel, Akl, Chang, McGowan, Stewart, Hartling, Aldcroft, Wilson, Garritty, Lewin, Godfrey, Macdonald, Langlois, Soares-Weiser, Moriarty, Clifford, Tunçalp and Straus2018), two review questions were designed, taking relevant key concepts into consideration:
(1) What are the stressors experienced by care-givers of older relatives living in the community with long-term health conditions?
(2) What coping and/or support mechanisms are used by them?
Methods
Bearing in mind our positionality, it followed that social constructivism guided our review methodology. We therefore aimed to conduct an inclusive synthesis of heterogenous concepts and narratives in order to identify and analyse gaps in knowledge. Hence, a scoping review was identified as the most appropriate method to map out systematically key concepts associated with the phenomena of interest and provide an in-depth synopsis of the evidence (Arksey and O'Malley, Reference Arksey and O'Malley2005). This approach allows up-to-date, evidence-based research to be explored and provides a synopsis of findings from a range of methods or disciplines with the aim of facilitating future research work (Tricco et al., Reference Tricco, Lillie, Zarin, O'Brien, Colquhoun, Levac, Moher, Peters, Horsley, Weeks, Hempel, Akl, Chang, McGowan, Stewart, Hartling, Aldcroft, Wilson, Garritty, Lewin, Godfrey, Macdonald, Langlois, Soares-Weiser, Moriarty, Clifford, Tunçalp and Straus2018).
Eligibility criteria
Research papers had to report studies meeting the following inclusion criteria:
• Conducted with mainland Chinese care-givers of older relatives with long-term health condition(s) residing in the community. Where the location of participants was not made explicit, studies were inferred to have taken place in the community.
• Reporting data from primary research work.
• Reporting on stressors and/or coping mechanisms of care-givers.
• Published in English or Chinese.
• No date restrictions were applied.
Information sources
Electronic databases were searched between October and November 2019. UK databases included: Cumulative Index to Nursing and Applied Health Literature (CINAHL), Excerpta Medica dataBASE (EMBASE), Medical Literature and Retrieval System Online (MEDLINE), PsycINFO and SCOPUS; Chinese databases included: CNKI – China National Knowledge Infrastructure, WANFANG DATA, Chongqing VIP Database for Chinese Technical Periodicals, CBM – China Biology Medicine Disc. Forward and backward citation searching was used to identify additional studies from eligible retrieved papers.
Search
The search protocol was discussed in depth between UK and Chinese researchers to ensure mutual understanding. Key terms were developed and guided by the SPIDER search mnemonic (Cooke et al., Reference Cooke, Smith and Booth2012) where the letters refer to: S – sample, PI – phenomenon of interest, D – design, E – evolution, R – research type. The terms were reviewed and discussed between co-authors. Terms were further critically reviewed by two university librarians to ensure they addressed the research questions. Truncations, phrase search, wildcards and proximity searches were all used and tailored to the requirement of individual databases. For an example of the key terms in the SCOPUS database, see Table S1 in the online supplementary material.
Selection of sources of evidence
For the English papers, the first author (OB) independently reviewed all titles using the eligibility criteria and selected studies eligible for further review. Following this, OB reviewed all abstracts for eligibility alongside CQ, achieving inter-rater agreement of 88 per cent. All disagreements were resolved through discussions and reaching consensus. Ten per cent of the eligible studies (N = 4) from the English databases were then subject to full-text screening and independent reviews of eligibility by OB and CQ. Inter-rater reliability was found to be 100 per cent. For the Chinese studies, titles and abstracts were screened independently by two researchers (CW) and (MK) adhering to the eligibility criteria. Following this, they each independently screened full texts for eligibility and reviewed decisions jointly to ensure consistency. In cases of disagreement, LY reviewed the studies independently and collaboratively with the other two researchers to reach consensus (for details, see Figure 1). References were managed using EndNote X9.
Figure 1. Flowchart of the search strategy.
Data charting process
In line with the recommendation of Arksey and O'Malley (Reference Arksey and O'Malley2005), the data extraction process was iterative. Charting tables were designed to extract key aspects of each study (country of origin, study design, number of participants, sources of stress and modes of coping). OB's data extraction from two English papers was checked by CQ and considered satisfactory. For the Chinese papers, data extraction and translation into English were conducted by LY, who led a team charting relevant papers. The extraction tables were sent to OB for analysis and to inform write up.
Results
Selection of sources of evidence
Forty-six papers were included: 20 from UK databases and 26 from Chinese databases.
Characteristics of sources of evidence
The majority of the studies were cross-sectional. Most focused on the burden and stress of care-giving, with a few capturing coping strategies. The majority were quantitative and employed a range of measures, such as the Caregiving Burden Inventory (CBI) (Chou et al., Reference Chou, Jiann and Chu2002) and Brief COPE Inventory (Carver, Reference Carver1997). Specific papers focused on care-givers of older relatives with a range of long-term conditions, including dementia, musculoskeletal conditions, and visual and hearing conditions. Others focused generally on older people with disability and, in some cases, with co-morbidities or multi-morbidities (for details, see Table 1).
Table 1. Data charted from 46 papers included in the review
Notes: ADL: activities of daily living. CBI: Caregiver Burden Inventory. CDR: Clinical Dementia Rating Scale. GP: general practitioner. HRQoL: health-related quality of life. IADL: instrumental activities of daily living. MCS: Mental Component Summary. MMSE: Mini-Mental State Examination. OR: odds ratio. SAS: Self Rating Anxiety Scale. SCL-90: Symptom Checklist-90. SD: standard deviation. SDS: Self-rating Depression Scale. SSRS: Social Support Rating Scale. WAP: Worry About Performance. ZBI: Zarit Burden Interview.
Synthesis of results
To accommodate the heterogeneity of the study designs and outcome measures, thematic analysis and narrative reporting were used to synthesise and present the findings (Levac et al., Reference Levac, Colquhoun and O'Brien2010). Following data extraction, data retrieved from relevant studies were sorted and organised under themes. Close attention was paid to cultural nuances and novel issues that related to the research questions. OB, CW and MK worked collaboratively to group and categorise the findings. Furthermore, the research team worked together to discuss developing themes. Themes were reconsidered on an iterative basis to establish consistency of interpretations. Six themes were derived that related to care-giving stressors: care-giving time, financial capabilities, role and personal strains, self-efficacy and social roles and lack of support. Only one theme was identified that focused on coping. Each theme will now be discussed in turn.
Care-giving time
Twenty-two papers referred to care-giver stress related to time spent performing care-giving duties. Across all the papers, a longer duration of care-giving was associated with higher levels of personal stress (Tang, Reference Tang2006; J Liu et al., Reference Liu, Wang, Tan, Ji, Gauthier, Zhang, Ma and Liu2012; Guogui et al., Reference Guogui, Du and Chen2017; Lu et al., Reference Lu, Li, Wang, Li and Chen2017; H Liu et al., Reference Liu, Li, Ding and Yang2018; Song, Reference Song2018; Tong, Reference Tong2018; X Liu et al., Reference Liu, Yang, Xie and Si2019), especially as the care recipients’ ability to self-care decreased (Lv et al., Reference Lv, Xu, Sun and Chen2013). Family members involved in care-giving were susceptible to low social functioning and reduced relaxation time (Yu et al., Reference Yu, Hu, Efird and McCoy2013; Qian et al., Reference Qian, Xu, Shi, Shao, Wang and Du2014; Guogui et al., Reference Guogui, Du and Chen2017; Wang et al., Reference Wang, Shao, Li, Liu, Xu and Du2018; Shen et al., Reference Shen, Wan, Xie, Chen and Li2019b). This was partly due to the time needed to meet the increasing needs of care recipients (Liu et al., Reference Liu, Wang, Tan, Ji, Gauthier, Zhang, Ma and Liu2012; Du et al., Reference Du, Qian, Xu, Shao, Zhao and Wang2014; Yu et al., Reference Yu, Wang, He, Liang and Zhou2015). Consequently, care-givers tended to struggle to meet both care duties and work demands, which tended to impede care-givers’ personal lives (Liu and Zhou, Reference Liu and Zhou2009; Liu et al., Reference Liu, Zhao and Xiao2015) and career development (Pan et al., Reference Pan, Li and Zhou2018). Furthermore, a study that explored experiences of care-givers who were in work (Pei et al., Reference Pei, Luo, Lin, Keating and Fast2017) reported an additional 5 per cent chance of losing a job with every one-hour per week increase in providing care. Care recipients who were dependent on public funding experienced higher levels of burden compared with those who were able to fund care themselves (Yong, Reference Yong2012). This, in turn, had a ripple effect on poorer care-givers, who moved in with care recipients in order to meet their needs (Wei et al., Reference Wei, Qian, Ma, Shao, Wang, Jin and Du2014; Wang et al., Reference Wang, Chen and Dong2019).
Financial resources
Seventeen papers indicated that there were financial implications to providing care. Liu et al. (Reference Liu, Guo and Bern-Klug2013) found that widowed, unmarried or divorced care-givers, with poor health, reported significant levels of economic stress. One female care-giver, for instance, took on care responsibility, with no financial support from siblings (Liu, Reference Liu2016). In other cases, older care-givers living with long-term conditions had limited financial resources to meet their own personal needs and those of the care recipient (Lu et al., Reference Lu, Li, Wang, Li and Chen2017; Wang et al., Reference Wang, Chen and Dong2019). Over time, family care-givers faced financial pressure from the inevitable increase in medical needs of older relatives (Chen, Reference Chen2017; Liu et al., Reference Liu, Chen and Jiang2017). The high costs of health and social care could be challenging for families with low income (Liu et al., Reference Liu, Yang, Xie and Si2019), especially where medical bills were concerned (Li et al., Reference Li, Wang, Huang and Zhao2009; Liu and Zhou, Reference Liu and Zhou2009; Lv et al., Reference Lv, Xu, Sun and Chen2013). Many family care-givers were subjected to financial distress due to the exorbitant cost of medical expenses for care recipients. In some cases, this contributed to the psychological burden they experienced (Yong, Reference Yong2012; Liu et al., Reference Liu, Guo and Bern-Klug2013; Du et al., Reference Du, Qian, Xu, Shao, Zhao and Wang2014, Reference Du, Shao, Jin, Qian, Xu and Lu2017; Jiang et al., Reference Jiang, Tan, Zhao, Wen, Huang, Chen, Jiang and Hu2015; Liu, Reference Liu2016; Pei et al., Reference Pei, Luo, Lin, Keating and Fast2017; Song, Reference Song2018). As such, care-givers experienced relatively high social dissonance due to their inability to fulfil obligations well and persistent physical exhaustion, which curtailed opportunities to socialise (Lv et al., Reference Lv, Xu, Sun and Chen2013).
Role and personal strains
Forty-two papers referred to either role or personal strains. Role strains were created when the care-giving role precluded the care-giver from fulfilling other obligations, as parent, spouse or employee. Twenty-three papers showed that care-givers felt stifled due to the demands of care-giving, especially those who themselves had poor health status (Liu and Zhou, Reference Liu and Zhou2009; Liu et al., Reference Liu, Zhao and Xiao2015; Liu, Reference Liu2016; Shen and Wang, Reference Shen and Wang2016; Chen, Reference Chen2017; Guogui et al., Reference Guogui, Du and Chen2017; Tong, Reference Tong2018). The high dependency of care recipients on care-givers, characterised by the severity of their long-term conditions and poor communication skills, placed particular demands on care-givers (H Li et al., Reference Li, Wang, Huang and Zhao2009; Chen et al., Reference Chen, Zhang, Qin, Li and Jiang2017; Liu et al., Reference Liu, Chen and Jiang2017; Song, Reference Song2018; P Li et al., Reference Li, Jiang, Chen and Li2019). The older the care-givers, the more stress they experienced as the care recipients’ ability to self-care reduced (Lv et al., Reference Lv, Xu, Sun and Chen2013). This may relate to the findings of Wei et al. (Reference Wei, Qian, Ma, Shao, Wang, Jin and Du2014) and Wang et al. (Reference Wang, Chen and Dong2019), who both found care-givers who were co-resident with care recipients were expected to meet the needs of their older relative at any time, and this negatively impacted on their wellbeing. By contrast, Li et al. (Reference Li, Yang, Gao and Li2013) found that stress levels were lower in co-resident care-givers, especially those who were competent in nursing care; the better the skillset of care-givers, the better they were at coping with the demands of the role. Further, Qiu et al. (Reference Qiu, Sit and Koo2017) noted that care-givers prioritised the wellbeing of care recipients at the expense of their own health as they felt obliged to expend their own energy before seeking help from others.
Due to competing demands of employment and care-giving, some care-givers gave up their jobs or reduced working hours to accommodate care responsibilities, which significantly increased care-giving burden (Pan et al., Reference Pan, Li and Zhou2018). The demands or anticipation of providing hands-on care also gave care-givers the impression that they were not in control of their own lives (Davis et al., Reference Davis, Martinson, Gan, Jin, Liang, Davis and Lin1995; He et al., Reference He, Zhang, Chou, Yu, Wu, Cui, Shao, Grant and Patterson1995; Liu, Reference Liu2016). For instance, care-giving demands created a sense of isolation, leaving care-givers disconnected from other people. Care-givers noted that ‘no-one cares’ about them, reflecting changes in society (Zhang et al., Reference Zhang, Clarke and Rhynas2020). Lack of control was also associated with the uncertainties of how to address the health condition of older relatives, ranging from the incurable nature of the condition to managing the implications of diagnosis, especially if society had negative perceptions of the condition (Lian et al., Reference Lian, Xiao, Zeng, Wu, Wang and Ren2017). Role strain could also be a function of the cultural environment. Societal pressures to hide the existence of dementia, coupled with negative experiences of attempts to use social services and lack of appropriate long-term care facilities, left families caring without outside help and could consequently place strain and cause conflict in family relationships (Sun, Reference Sun2014).
Nineteen papers highlighted issues relating to the personal strains of care-giving. These personal strains were associated with a range of factors. He et al. (Reference He, Zhang, Chou, Yu, Wu, Cui, Shao, Grant and Patterson1995) found that both the physical and mental health of care-givers were adversely affected, in cases where care-givers were older people themselves (85 years and above), female and uneducated, and the care recipient was male. Reduction in physical, cognitive and behavioural capabilities of the care recipient (Qian et al., Reference Qian, Xu, Shi, Shao, Wang and Du2014; Sun, Reference Sun2014; Jiang et al., Reference Jiang, Tan, Zhao, Wen, Huang, Chen, Jiang and Hu2015), as well as older age and poorer health status of care-givers (Lu et al., Reference Lu, Li, Wang, Li and Chen2017; Pan et al., Reference Pan, Li and Zhou2018; Tong, Reference Tong2018; Liu et al., Reference Liu, Yang, Xie and Si2019; Wang et al., Reference Wang, Chen and Dong2019), contributed to higher levels of personal care-giver stress (Shen and Wang, Reference Shen and Wang2016). Particular care-giving activities were found to be personally stressful, especially when care-givers had to manage the care recipient's behaviour (Fu et al., Reference Fu, Yue and Liu2007; Lu et al., Reference Lu, Liu and Lou2015; Wang et al., Reference Wang, Xiao, Li, De Bellis and Ullah2015; Yu et al., Reference Yu, Wang, He, Liang and Zhou2015) which disrupted care-givers’ plans for social outings or hobbies (Zhao, Reference Zhao2011; Liu et al., Reference Liu, Zhao and Xiao2015). Care-giver stress could precipitate breakdown in family relationships (Liu, Reference Liu2016), especially when care-givers perceived pressure from caring responsibilities (Chen, Reference Chen2017) and had no time to consider personal preferences (Yong, Reference Yong2012).
Preparedness
Four papers identified the role of preparedness of care-givers. Care-givers felt unprepared for meeting the needs of care recipients (Liu and Bern-Klug, Reference Liu and Bern-Klug2016), as they, for instance, were anxious about post-diagnostic management and felt they lacked appropriate skills (Chen, Reference Chen2017; Lian et al., Reference Lian, Xiao, Zeng, Wu, Wang and Ren2017). Wang et al. (Reference Wang, Shao, Li, Liu, Xu and Du2018) suggested care-givers would benefit from psychological counselling to address the consequences of lack of preparedness in order to ease pressure.
Social roles
Ten papers considered the influence of gender in the context of care-giving. Women were considered emotionally susceptible to the pressures of care-giving, especially as they were providing most hands-on care (Tang, Reference Tang2006; Fu et al., Reference Fu, Yue and Liu2007; Wang et al., Reference Wang, Xiao, Li, De Bellis and Ullah2015; Song, Reference Song2018). Women were also found to experience more physical stress in comparison to men (Pei et al., Reference Pei, Luo, Lin, Keating and Fast2017). Men, who did little or no hands-on care, were considered privileged, with better opportunities to acquire health-related knowledge and social resources (Lu et al., Reference Lu, Li, Wang, Li and Chen2017). In some cases, men also experienced negative aspects of care-giving (Song, Reference Song2018), e.g. ‘eldest sons’ were found to be more susceptible to stressors such as financial pressures (Tang, Reference Tang2006; Liu et al., Reference Liu, Guo and Bern-Klug2013). Co-residents and daughters, who are societally expected to provide care, often had to provide care unfailingly and this subjected these care-givers to stress (Liu, Reference Liu2016; Liu and Bern-Klug, Reference Liu and Bern-Klug2016).
Lack of adequate formal support
Twenty-two papers referred to the lack of adequate formal support from health and social care. There was copious evidence of care-givers lacking the knowledge and skills to meet the needs of care recipients and this was associated with adverse health outcomes and negative experiences (Fu et al., Reference Fu, Yue and Liu2007; Zhang et al., Reference Zhang, Xiong, Hujiken, Zhang and Zhang2013; J Wang et al., Reference Wang, Xiao, Li, De Bellis and Ullah2015; Liu, Reference Liu2016; Guogui et al., Reference Guogui, Du and Chen2017; X Liu et al., Reference Liu, Chen and Jiang2017, Reference Liu, Yang, Xie and Si2019; H Liu et al., Reference Liu, Li, Ding and Yang2018; M Wang et al., Reference Wang, Shao, Li, Liu, Xu and Du2018). The absence of adequate formal support implies that relatives had to rally around primary care-givers for support. However, too little or too much relative input could equally be a source of stress (Chen, Reference Chen2017; Song, Reference Song2018). In addition, care-givers expressed concerns about the societal rejection of people living with dementia due to stigma and misunderstanding. The cultural environment did not necessarily afford care-givers adequate resources, mostly because dementia was considered incurable and there was either lack of staff at community centres, lack of assessment tools or unaffordable costs for assessment. In these circumstances, care-givers sought advice within their social network, not from professionals (Lian et al., Reference Lian, Xiao, Zeng, Wu, Wang and Ren2017). Similarly, in terms of care knowledge and skills, care-givers lacked professional support from primary health workers (Liu et al., Reference Liu, Wang, Tan, Ji, Gauthier, Zhang, Ma and Liu2012). It was suggested that geographical distance between care-givers and care recipients can be a source of stress (Guogui et al., Reference Guogui, Du and Chen2017), as the lack of local care services leaves care-givers with very limited options for delegation of care-giving tasks. Care-givers in one study expressed significant dissatisfaction with the comparatively low subsidy for care purposes and low levels of public service provided by the government (Shen et al., Reference Shen, Chen, Xue, Li and Zhang2019a). This was further compounded by the lack of long-term care facilities (Du et al., Reference Du, Shao, Jin, Qian, Xu and Lu2017). In addition, the absence of services to signpost care-givers to available community resources (Yong, Reference Yong2012; Shen and Wang, Reference Shen and Wang2016) could perhaps explain the negative impacts of care-giving on health and finances (Liu and Lou, Reference Liu and Lou2012). Depressive symptoms were significantly associated with time dependence, physical burden and social burden (Lu et al., Reference Lu, Liu and Lou2015). Lu et al. found that being younger, living with older relatives, having a higher income and shorter informal care hours were also associated with lower levels of physical burden. This suggests that higher physical burden in care-givers could result in low levels of satisfaction, which could consequently result in conflict between family members, and manifest as low levels of support (Zhang et al., Reference Zhang, Xiong, Hujiken, Zhang and Zhang2013). In support, Qiu et al. (Reference Qiu, Sit and Koo2017) study found that poor social support services and limited access to information tended to impede care-givers from using formal services, resulting in care-givers feeling despondent and isolated. Moreover, in cases where care-givers had access to community services, health key workers were perceived to be unempathetic and inconsiderate (Yong, Reference Yong2012).
Coping
Fourteen papers were identified to have explored how care-givers were coping. Studies indicated a range of sources of external support were used. Shen et al. (Reference Shen, Chen, Xue, Li and Zhang2019a) found that care-givers sought support from family members, professional care services and care-related government subsidies. From the study, only 5 per cent of respondents found the government subsidy package somewhat useful. As most care-givers did not engage with professional services (Wei et al., Reference Wei, Qian, Ma, Shao, Wang, Jin and Du2014), Pan et al. (Reference Pan, Li and Zhou2018) found that most care-givers sought support from relatives, friends and society, and that the level of social support was moderate. In some cases, care-givers over 65 years of age had no other option other than to rely on their family members and neighbours as they had only a few close friends to assist further (Yu et al., Reference Yu, Hu, Efird and McCoy2013). Care-givers’ children provided assistance as an act of being filial to parents (Liu, Reference Liu2016). Practical family and social support reduced burden by reducing the time care-givers devoted to care-giving and providing some respite (Li et al., Reference Li, Wang, Huang and Zhao2009; Shen and Wang, Reference Shen and Wang2016). In other cases, family members took the care-giving role in turns (Yong, Reference Yong2012). Conversely, Wang et al. (Reference Wang, Xiao, Li, De Bellis and Ullah2015) reported that increased numbers of social support ‘helpers’ were associated with higher levels of care-giver distress. In the absence of social support, however, Liu et al. (Reference Liu, Li, Ding and Yang2018) found that some care-givers became sleep deprived, which was associated with higher levels of depressive symptoms, and social support was protective with regards to the depressive symptoms experienced by care-givers.
In terms of emotion-focused coping, care-givers generally accepted their situation (Qiu et al., Reference Qiu, Sit and Koo2017) and used emotion-focused strategies such as dancing, singing, listening to music and gardening to cope with anxieties and frustrations associated with their role (Sun, Reference Sun2014). They coped with social pressures through avoidance, escapism and providing justifications for actions. In addition, they coped with the demands of their role and developed self-confidence by drawing upon their moral qualities, including their senses of duty and responsibility (Davis et al., Reference Davis, Martinson, Gan, Jin, Liang, Davis and Lin1995; Qiu et al., Reference Qiu, Sit and Koo2017). Qiu et al. (Reference Qiu, Sit and Koo2017) further stated that care-givers coped by drawing on their inner strength. Offspring of older people were found to need more support compared to spouses and other relatives. Emotional support from their social network reduced the level of burden they experienced (Wei et al., Reference Wei, Qian, Ma, Shao, Wang, Jin and Du2014). Care-givers believed that providing care for older relatives was the right thing to do based on their cultural values and, as a result, they coped by making self-sacrifices (Liu, Reference Liu2016; Qiu et al., Reference Qiu, Sit and Koo2017). There was an expectation that immediate family members would provide care for their older relatives, regardless of receiving substantial support or not.
In terms of problem-focused coping, care-givers planned, actively sought care knowledge, mastered care skills and positively reframed their experiences (Yu et al., Reference Yu, Hu, Efird and McCoy2013; Sun, Reference Sun2014; Qiu et al., Reference Qiu, Sit and Koo2017). For example, some care-givers sought advice from social networks and engaged with formal services (Lian et al., Reference Lian, Xiao, Zeng, Wu, Wang and Ren2017) in order to be resourceful by seeking information to ground decisions and explore options. Liu et al. (Reference Liu, Wang, Tan, Ji, Gauthier, Zhang, Ma and Liu2012) found that in the absence of general practitioners, care-givers made use of media such as books, television, radio and newspapers as sources for knowledge and skills acquisition. Some care-givers were found to utilise a distinctive coping strategy, namely a ‘family-connected strategy’ (Qiu et al., Reference Qiu, Sit and Koo2017). More specifically, Sun (Reference Sun2014) stated that care-givers coped with family obscurities by planning ahead and engaging in direct confrontations. To cope with financial difficulties, care-givers actively searched for jobs and sought assistance through governmental agencies. Some combated social isolation by playing games at home.
Discussion
The evidence provided in this scoping review demonstrates the variety of stressors and coping mechanisms described by mainland Chinese people, providing care for older relatives living with long-term health conditions. Key themes associated with stressors were care-giving time, financial resources, role and personal strains, preparedness, social roles and lack of adequate formal support. These stressors showed a range of unmet needs for care-givers. These stressors can be continuous, distinct and inevitably intertwined, as one stressor can be a triggering factor for another. It is important to note that cultural context and societal resources are critical to understanding the nature and degree of unmet needs. Even though Lu et al. (Reference Lu, Zhang and Zhang2021) asserted that rapid evolution of the principles of filial piety (Xiao) is leading to an increasing number of older people desisting from burdening their children, this review showed that there are various unmet needs of care-givers. With changes to communities and cultural values in China, it is plausible that these unmet needs could result in or exacerbate existing existential crises such as isolation and loneliness of care-givers. This could aggravate breakdown in relationships and even result in abuse of older people by their relatives. Fang et al. (Reference Fang, Yan, Chan and Ip2018) found that 42.8 per cent of 1,002 older people aged between 55 and 90 were subjected to either physical or psychological abuse over a period of 12 months and victims had increasing odds of developing long-term health conditions. Thus, adequately capturing individual meanings associated with caring for older relatives has the potential to contribute to the body of evidence needed to address issues relating to efficiency and equity of long-term care provision in China (Yang et al., Reference Yang, Wu, Tan, Li, Lou, Chen, Chen, Fletcher, Carrino, Hu, Zhang, Hu and Wang2021).
The majority of papers retrieved for this review were cross-sectional studies, making it difficult to pinpoint meanings associated with cultural values. Therefore, it is unclear how much care-givers subscribed to the fundamental value of Xiao, as it might be that family care continues only from a sense of duty not from a sense of affection (Quinn et al., Reference Quinn, Clare and Woods2010). Care-givers were subject to a significant level of stressors and the societal expectations attached to their role, coupled with the lack of adequate formal support services, appeared to influence the way they appraised their stressors and coping resources. With the evolution of Xiao, changing of family structures and a rapid rise in the number of older relatives needing daily care support (Lu et al., Reference Lu, Zhang and Zhang2021), it is expected that attitudes and motivations of care-givers will vary, and this will consequently determine if care-givers have negative or positive experiences. In line with this, Knight and Sayegh (Reference Knight and Sayegh2010) suggested it is important to pay closer attention to the influence of cultural values on stressors and coping strategies instead of grouping care-givers as a monolith. Similarly, Burhanullah and Munro (Reference Burhanullah and Munro2020) argued that more attention needs to be paid to the impact of evolving family structures, for instance, as this would impact on meanings associated with cultural values, which in turn, would affect care-givers and the appraisal of their role.
In a systematic review, McCabe et al. (Reference McCabe, You and Tatangelo2016) indicated that many unmet needs of care-givers were associated with lack of formal support. In line with this, our findings equally show that care-givers lack adequate support and, more specifically, are not well prepared for taking on their care-giving role. Most found it stressful, especially with regard to financial costs and the provision of hands-on care. Despite the association between stressors, coping, care provision and the cultural context, only a few papers discussed how prepared care-givers were to take on caring. Lack of preparedness of care-givers, found in this review, reinforces the point that care-givers of older relatives are simply expected to get on with their responsibilities. This highlights a gap between care provision and education. Future research could usefully develop and evaluate appropriate educational interventions which directly address the lack of preparedness experienced by care-givers. Such interventions would need to acknowledge that caring for older relatives in China is multi-dimensional and pay attention to the influence of the individual's socio-cultural environment on the process of care-giving.
China is associated with a collectivist culture, which tends to promote interdependence, meaning that self-construal incorporates attention to others’ needs and is therefore affected by the demands of the socio-cultural environment. However, even though caring responsibilities are culturally ingrained as paramount, the results found in this scoping review indicate that little is known about the holistic needs of the care-givers whose services are fundamental to sustaining the society. As such, it can be inferred that little attention has been paid to the intricacies of their burden. Areas relating to selfhood (implications of the process of care-giving on social identity), sociality (implications of care-giving process on relations with others), embodiment (implications of the process of care-giving for gender, body sensations and ‘disability’), temporality (implications of the process of care-giving for time) and spatiality (implications of the care-giving process for place) have not yet been captured adequately (Ashworth, Reference Ashworth2006). The association between care-giving and stress implies that care-givers feel excessively taxed; which could progress to care-givers suppressing their emotions and, consequently, limiting their ability to exercise agency. One of the main gaps in extant research relates to the need to understand how care-givers exercise their individual agency in relation to their personal attitude and capacity for care-giving. For instance, care-giving time was identified as a source of stress, but most papers failed to capture the interaction between care-giving time and time spent on other aspects of life. With rapid socio-demographic transitions, there appears to be an excessive demand placed on care-givers who are employees, due to the highly competitive job market in China. There is also rapid internal migration as people seek out better life opportunities, leading to the strains caused by caring from a distance. In addition, Warmenhoven et al. (Reference Warmenhoven, Hoebink and Janssens2018) found that there are still lingering patrilinear values, with some men still expecting women to oblige the traditional model of care, especially with the care of parents-in-law. Given the continuing attitude that women should care, alongside the consequences of the one-child policy, there will be many women who are overloaded with care responsibilities. As such, dilemmas associated with social roles and lack of adequate formal support have implications for time needed or available for care-giving.
In the absence of holistic consideration of the needs of care-givers, this scoping review showed that a significant number of papers pertained to personal and role strains. Some care-givers felt trapped by their role, in the sense that although they were not particularly unhappy with providing care for their older relative, they resented their inability to pursue their personal goals and ambitions. Even though they are fulfilling Xiao and their legal responsibilities to meet their older relative's financial, emotional and physical needs (Xu et al., Reference Xu, Hsiao, Denq and Chi2018), within the context of role captivity, lack of change for care-givers could be detrimental for their wellbeing. More specifically, with the socio-demographic transitions in China, Generation X and Millennials (those born from 1965 to 2000) must reconcile the key message on Xiao of their childhood with the need to capitalise on economic opportunities, taking opportunities that life presents alongside managing being solely responsible for their ageing parents.
Although the papers reviewed cover a span of 25 years during which socio-economic and cultural environments in China have evolved rapidly, it was not possible to extract a sense of how care practices and meanings attached to care-giving have changed over this period. However, we noted that only two papers in this review were published between 1995 and 2004, with both focusing on whether there was care-giver stress. In the period from 2005 to 2020, there have been increasing numbers of publications (2005–2009: four papers; 2010–2014: 13 papers; 2015–2019: 28 papers) focused on a wider range of facets of care-giving. Given that the country had very limited time to prepare for transition into an ageing society, an explanation for the increase in the numbers of papers published could be researchers’ response to the increasing prominence of the implications of socio-economic and cultural transitions on the role of care-giving over time. It is therefore plausible to deduce that care-givers have been under increasing pressure to reconcile their care-giving tasks and care expectations with personal pursuits. Continuously having to adapt to the changing needs of care recipients to manage this reconciliation can further exacerbate psychological stress, which can have adverse implications for self-efficacy and role appraisal (Montgomery and Kosloski, Reference Montgomery and Kosloski2009). More specifically, in situations where care-givers are no longer able to cope with increased demands, and having in mind transitions with regard to traditional values, Fang et al. (Reference Fang, Yan, Chan and Ip2018) showed that highly dependent Chinese older people are more susceptible to physical and psychological abuse at the hands of family care-givers when compared to their counterparts in Western societies.
Despite the significant number of papers showing that care-givers experience stress, only about one-third reported coping strategies which included both problem- and emotion-focused strategies, whereby care-givers took active steps in acquiring knowledge relating to their role and drew on family and social support to alleviate stressors. Even though the majority of care-givers in this review were dependent on family and social support, and reported some level of alleviated stress, it is unclear whether this informal help had long-term benefits for the primary care-givers and care recipients. Such information is needed, especially given that care-givers have to cope with a series of changes and care transitions (Moral-Fernández et al., Reference Moral-Fernández, Frías-Osuna, Moreno-Cámara, Palomino-Moral and Del-Pino-Casado2018) and because filial responsibility may prevent care-givers from using formal services (Qiu et al., Reference Qiu, Sit and Koo2017). The lack of detailed attention to ways of coping reflects the emphasis that has been placed on describing adverse care-giving experiences rather than exploring how people manage such experiences. It could also suggest that cultural underpinnings such as Ren (忍; endurance of hardship) steer researchers away from exploring coping mechanisms in depth, as they share the belief that people typically get on with hard times (Lam et al., Reference Lam, Ng, Pan and Young2015).
This review highlights the relevance of the socio-cultural model of stress and coping (Knight and Sayegh, Reference Knight and Sayegh2010), pin-pointing important areas for future research in terms of the intersections between cultural values, such as Xiao, stressors and coping resources. Having established the interweaving features between culture and care-giving for older relatives, future research should explore the influences of Chinese culture on the process of care-giving. Culture is dynamic and its influence on care-giving processes is therefore challenging to measure with standardised quantitative measures. Quantitative measures of care-giving burden and coping, as employed by most papers in this review, can provide researchers or policy makers with a baseline and help in identifying unmet needs, but do not provide insight into the complexities underlying the processes of care-giving. Only nine studies in this review utilised qualitative methodologies, yet such methodologies potentially could provide a deeper insight into issues such as coping, particularly as so few studies have explored this. In the absence of sufficient evidence to determine the types of care services that will best serve older peoples’ needs (Yang et al., Reference Yang, Wu, Tan, Li, Lou, Chen, Chen, Fletcher, Carrino, Hu, Zhang, Hu and Wang2021), qualitative methodologies may be useful in providing a contextualised understanding of care-giving that could inform policy for future service development.
Taken together in the context of methodological issues, these findings could be drawn upon to inform service provision for Chinese indigenes in technologically developed countries like the UK, for instance. People from minority ethnic groups are under-represented within formal services for older people in the UK, and Baghirathan et al. (Reference Baghirathan, Cheston, Hui, Chacon, Shears and Currie2020) suggested that there is a dearth of evidence with regards to the needs of Chinese family care-givers in the UK. It is therefore important that families are supported in a sensitive manner that respects cultural values.
Strengths and limitations
This review used a rigorous method to capture a wide range of papers by searching nine electronic databases for relevant literature, identifying papers written in English and Chinese. All abstract and full-text screening was completed by three independent reviewers. Having the perspective of researchers from several ethnic groups further proved invaluable. Even though Chinese and English peer-reviewed papers were included, it is recognised that a search of grey literature could have generated further relevant papers. In line with scoping review methodology and our positionality, we did not exclude any papers on the basis of their quality but placed emphasis on synthesising existing evidence, in order to give a comprehensive overview (Peters et al., Reference Peters, Godfrey, Khalil, McInerney, Parker and Baldini2015). Despite the fact that two experienced librarians and several researchers developed the search strategy, key terms and descriptors used might have limited the numbers of papers retrieved from databases.
Conclusions
It is important to understand the needs of Chinese care-givers, particularly as stressors can be interwoven, are culturally situated and have implications for coping mechanisms adopted by care-givers. Idiosyncratic contexts of care-givers, with respect to their needs, must be understood and used to inform service development. In addition, to enable the development of competent health and social care systems, stakeholders need to acknowledge that culture is multifaceted and has implications for care-givers’ appraisal of their roles. As such, instead of focusing solely on families’ obligations to care, the pertinent question is, how can families be supported to fulfil this responsibility? Future studies should further explore how care-givers exercise their agency, to enable them to fulfil their responsibilities in a way that best suits their circumstances and the implications of this for stressors and coping mechanisms. This would help define the nature of adequate support. Care-giving is complex and this review has identified areas that require further research, particularly recognising that the intricacies of the process of care-giving cannot solely be captured by adopting measures which rely on linearity. Thus, researchers, policy makers, and health and social care practitioners must endeavour to have more cognisance of the cultural environment whilst elucidating the phenomenon of caring for older relatives, so as to sustain both family and cultural values.
Supplementary material
The supplementary material for this article can be found at https://doi.org/10.1017/S0144686X21000817
Acknowledgements
The authors are grateful to Maria Introwicz and Mat Andrews, who are the Faculty of Health Studies librarians at the University of Bradford, for their time and effort with regards to refining the search terms.
Author contributions
OB developed the study concept and design, developed and piloted the search strategy, conducted searches, screened articles, performed data extraction, analysed the data and led the writing of the manuscript. CQ contributed to the design of the study, helped develop the search strategy, co-screened the articles, checked the quality of the data extraction, supported the interpretation of the results and critically reviewed the manuscript. LB contributed to the design of the study, helped develop the search strategy, supported the interpretation of the results and critically reviewed the manuscript. CW searched for eligible studies in the named Chinese databases, captured and translated relevant information into the English language, and reviewed the final draft of the manuscript. MK searched for eligible studies in the named Chinese databases, captured and translated relevant information into the English language, and reviewed the final draft of the manuscript. LY identified eligible Chinese studies and critically reviewed the paper to ensure that it reflects and captures the key components of the papers found in the Chinese database, and also to ensure that the cultural nuances were adequately captured. JO contributed to the design of the study, helped develop the search strategy, contributed to the interpretation of the results and critically reviewed the manuscript.
Financial support
This work was supported by Research England: Quality Related Global Challenge Research Fund (QR-GCRF).
Conflict of interest
The authors declare no conflicts of interest.
