Family carers and social difference
Family carers and social difference
Abstract and Keywords
The rising number of people facing old age makes it likely that serious chronic and life-limiting illness will be a dominant challenge for health care delivery in the next half-century. Family carers will continue to play a major role in the provision of support and care. This chapter briefly summarizes what is known about family carers to lay the foundation to engage in discussions of difference. Specifically, it discusses ‘social differences’ that receive relatively little attention in the literature in relation to family care work: cultural and religious difference, and social class difference. The chapter uses examples to illustrate how these differences can challenge that which we have learned about carers and will suggest supportive interventions that take into account such difference.
Family carers are individuals who provide unpaid care and/or support to a family member, friend, neighbour, or significant other who has a physical or mental disability, is chronically ill, or is frail. In many resource rich countries the de-institutionalization of health and social care and increasing emphasis on care in the home has resulted in family carers taking on a large portion of the care that was once provided by the health and social care system. In England there are an estimated 5 million carers (Health and Social Care Information Centre, 2010). In Canada, 1.5 to 2 million carers provide $25–26 billion worth of care annually (Hollander, Liu, et al., 2009). Coined the ‘invisible welfare state’, the unpaid contributions of family carers have been estimated to be five times the paid workforce in terms of full-time equivalents (Australian Institute of Health and Welfare, 2003). Clearly, family carers provide a substantial service to the health and social care system and to society at large. This is particularly true in resource poor countries where access to services is severely limited and where family members may be the only people available to provide care (Hunt, 2009).
The rising number of people facing old age makes it likely that serious chronic and life-limiting illness will be a dominant challenge for health care delivery in the next half-century. Family carers will continue to play a major role in the provision of support and care. In this chapter I briefly summarize what is known about family carers to lay the foundation to engage in discussions of difference. Specifically, I will discuss ‘social differences’ that receive relatively little attention in the literature in relation to family care work: cultural and religious difference, and social class difference. I will use examples to illustrate how these differences can challenge that which we have learned about carers and will suggest supportive interventions that take into account such difference.
Family care work at the end of life
While men are increasingly engaged in caregiving functions, women provide the large majority of care to chronically ill and dying people (Armstrong, Amaratunga, et al., 2002). Carers cross the age span, but most carers are middle-aged (National Alliance for Caregiving, 2004), are employed in addition to their unpaid family care work (Ferrario, Cardillo, et al., 2004) or stop working temporarily or reduce their paid work (p.184) in order to provide care (Hudson, 2004). Most research on family carers at the end of life relates to carers of people with cancer. There is less known about those who provide care to people with other serious life-limiting illnesses (Stajduhar, Funk, et al., 2010).
Family care work offers considerable rewards as the process of giving care can facilitate closure after the death and help carers find meaning in their experiences (Salmon, Kwak, et al., 2005). Moderate to high levels of emotional and psychological difficulty, financial strain, activity disruptions, and negative physical health outcomes are also common (Stajduhar, Funk, et al., 2010). The caregiving experience is uncertain because of the unpredictability of the trajectory (Farber, Egnew, et al., 2003); there is a disruption to ‘normal life’ (Stajduhar and Davies, 2005) and experiences of helplessness, vulnerability, and isolation are common (Milberg, Strang, et al., 2005). Getting support is often hampered because many family carers do not identify themselves as legitimate recipients of help. Long hours of care provision are accompanied by fatigue and sleep deprivation. Family carers may feel ill-prepared for caregiving roles and uncertain about their abilities (Wennman-Larsen and Tishelman, 2002); some feel pressured to provide such care yet feel ambivalent about it (Stajduhar and Davies, 2005).
The challenges associated with family care work are primarily related to the work involved in the care of the dying which includes, but is not limited to: (a) conducing domestic chores and household tasks; (b) providing personal care and assisting the dying person with activities of daily living; (c) managing symptoms such as pain and constipation; (d) providing emotional and social support to the dying person; (e) being a spokesperson, advocate, and proxy decision-maker; and (f) coordinating all aspects of the dying person’s care (Stajduhar and Cohen, 2009). The challenges that carers face are exacerbated in resource poor countries where poverty and illness are rampant and where palliative care services are scarce (Hunt, 2009).
Family care work and social difference
Regardless of age, gender, disease, geographic locale, and other variations of caregiving characteristics, there is some universality in the experience of family carers. There are also important social differences. Here I focus on cultural and religious difference and social class difference.
Cultural and religious difference
Our world is home to an increasingly diverse population. Whereas in the past, resource rich countries were populated by the dominant (white) culture, this is no longer the case (Kagawa-Singer and Blackhall, 2010). Many resource rich countries are now home to an increasingly large immigrant population who come with distinct values, beliefs, and cultural and religious practices that often differ from those in resource rich nations. These differences have implications for how we conceptualize family care work. For instance, many members of recent immigrant communities are embedded in traditional cultural and religious communities (e.g. Muslim, Hindu, Sikh, Buddhist, and traditional Chinese) in which the autonomous ‘I-self ’ (Coward and Ratanakul, 1999), that is central to the way families and individual autonomy are understood in the West, is held to be of much less significance than the socially interconnected ‘we-self ’. (p.185) Whereas the dominant model at work in many North American social settings presupposes that the locus of identity and decision making is the individual, in we-self cultures, major end of life decisions, such as who should provide end of life care, are understood to be the rightful topics of concern for a broad network of family and friends. Conflicts between the dominant ‘I-self ’ culture and that characterized as the ‘we-self ’ may arise where tensions can emerge between those of the first generation who may be closely tied to traditional ethnic and religious values and those of the second and third generations who may have a more liberal and individualistic approach to their personal, cultural, and religious identities. For example, it is not at all uncommon to have dying (relative) newcomer Canadians cared for in the home by second or third generation children and grandchildren who may not espouse the same traditional religious and cultural values and practices. Such caregiving contexts can engender tremendous stress and resentment in the lives of the carers when they are asked, or in fact expected, to set aside many of the individualistic values they have embraced for decades in order to respect traditional patriarchal, religious and ethnic values and practices.
Relatedly, while language and communication barriers are often cited as reasons why carers from ethnic minority groups may not access services at the end of life (Kagawa-Singer and Blackhall, 2010), issues of filial responsibility should also be considered. Filial piety, or the expectation that children will care for their parents without question, is an important concept, particularly in Asian cultures. Among Chinese families, for example, caregiving is an essential element of filial piety and acceptance of hospice care by carers can be considered dishonourable to the parents as it sends a message to their larger community that the family is unable to provide adequate care. As Kagawa-Singer and Blackhall (2010) maintain, how well carers fulfil their filial obligations is ‘open to community scrutiny and judgement and would reflect poorly on the parenting abilities of the parents and on the extended family if the children do not fulfil their obligations’ (p. 340). In this instance, interventions commonly offered to carers such as respite care, visiting nurses, or help with practical aspects of caregiving in the home, may not be welcome suggestions and in fact may be viewed as insulting.
Conflicts may also emerge between family carers and professional care providers when traditional cultural and religious ways are not understood by providers. In palliative care, this is often seen in relation to truth-telling. For example, in some Chinese traditions, families will not discuss death and dying with the patient for fear of invoking bad luck (Yick and Gupta, 2002) and sometimes, providers are asked by the carer to not tell the ill person of their impending death. These approaches are in contrast to a westernized approach that supports the belief that the dying be informed of their impending death. In such conflicts, one may witness differences between what we might call religious culture, which may include distinctive rituals, languages, texts, assumptions, and hierarchies, and what is arguably a professional/expert culture, offering their understanding of cultural and religious care.
Social class differences
Although socio-demographic and economic attributes do not emerge as potent independent influences on various caregiving outcomes, it would be erroneous to assume (p.186) that the impact of caregiving is not dependent upon the carer’s characteristics or locations in the social system. Family care work is embedded within the context of a carer’s life and his or her social standing. Even in a country like Canada with well-established palliative care programmes, only 16 to 30 per cent of Canadians who die, and their carers, have access to or receive palliative care services, and even fewer carers receive grief and bereavement care (Canadian Institutes of Health Information, 2007). There are many reasons for this and some research suggests that social class differences play a role. For example, people with lower levels of education, unskilled employment, and in lower social classes are less likely to access formal health services, relying instead on informal networks (Pinquart and Sorensen, 2005). Low-income carers have increased needs for support and education compared to those who can afford to pay for services beyond those provided by the state and they experience greater carer distress than do carers in higher income brackets (Williams, Forbes, et al., 2003). A growing body of research indicates that ethnic minorities lack access to treatment for symptoms such as pain (Cleeland, Goin, et al., 1997) and barriers to health and social care that the poor and disenfranchised have traditionally encountered may affect the patient and carer’s receptivity to palliative care. At the same time, family carers who do not access formal services and have minimal support tend to experience more stress and burden than those with more support (Grbich, Parker, et al., 2001; Knight, Devereux, et al., 1997).
In addition to these differences, overlooked populations such as those who are homeless and dying on the streets conjure up different definitions of family carers. Since many homeless persons are reluctant to contact families towards the end of life and avoid hospitalization, those taking on the caregiving role may be other homeless people who have mental health and/or addictions issues, personnel working in shelters or transition houses, or street outreach workers, many of whom who are unprepared for providing care at the end of life and who may be overwhelmed by witnessing multiple ‘bad deaths’ (Podymow, Turnbull, et al., 2006; Stajduhar, Poffenroth, et al., 2004). There is a paucity of literature available to direct us to how to best support these carers who themselves can feel stigmatized and marginalized because of the populations of people that they care for.
Finally, some of the most noticeable differences among the experience of carers are between those caring in resource rich and resource poor countries. Kellehear (2009) points out that for regions such as Africa, the provision of end of life care is heavily dependent on family carers because access to health services is severely limited. Diseases such as HIV/AIDS are highly stigmatized and carers may themselves experience shame, stigma and social isolation and rejection by association, leaving families with even fewer social and material supports. Widespread poverty, civil unrest, political uncertainty, and access to the basic necessities of life such as clean drinking water all provide a challenging backdrop upon which end of life care is provided. In resource rich countries with established palliative care services, carers tend to be of a higher social class, have more economic resources and access to specialized services. In resource poor countries, carers tend to be of a lower social class, live in rural areas, have few economic resources and limited or no access to specialized services (Hunt, 2009). While family carers in resource rich settings experience many burdens associated (p.187) with care work, this is even more pronounced in resource poor countries. Children affected by HIV/AIDS take on a major portion of family care work, oftentimes needing to stop schooling to take on family domestic chores once reserved for adults or to provide care to sick and dying parents and relatives (Hunt, 2009).
Social difference and supportive interventions for carers
Although family carers provide the vast majority of care at the end of life, they typically receive little preparation, information or support to undertake this vital role. Several carer interventions have been implemented to reduce the negative impacts of caregiving and enhance the positive aspects. Northhouse and colleagues (2010) conducted a meta-analysis of 29 randomized trials of interventions (psycho-educational, skills training, and therapeutic counselling) with family carers of cancer patients and found that even though effects were small to moderate in size, the interventions showed promise in achieving clinically significant outcomes such as reduced burden, enhanced capacity to cope, and improved quality of life. As the authors highlight, however, there are few interventions that study racial, cultural and socioeconomic diversity, with only two of the 29 studies tailored for a particular cultural or racial group. There is a need for future studies that focus on the inherent diversities in family care work and that will better inform the development of supportive interventions in this regard. As a starting point, providers can acknowledge that cultural and religious diversity is an important part of the fabric of palliative care, regardless of the country in which one resides. Understanding cultural and religious diversity is not, however, just about learning a set of beliefs or practices of an ethnic group or religious tradition. In making such categorizations we ‘run the risk of stereotyping or believing we know what any one individual thinks or does because we assume we know what people of that group tend to think’ (Kagawa-Singer and Blackhall, 2010: 331). Recognizing that there can be wide variation in beliefs and practices for individuals within particular groups will enhance the likelihood of individual needs being attended to.
Despite the challenges faced by carers in resource poor countries, Wright (2003) illustrates how countries such as Russia and Swaziland have developed imaginative models to provide better end of life care to the dying. Though much more is required to ensure access to palliative care services that will be supportive of carers worldwide, Hunt (2009) maintains that educating health professionals and the large voluntary sector as well as enhancing access to analgesics will help to improve the quality of dying and support for carers, particularly in rural and remote settings where access to specialized services in nonexistent. Additionally, as Kellehear (2009) argues, supporting community development initiatives is a necessity in resource poor countries where non-professional supports are sometimes the only supports available. While there are implications to adopting empowerment and health promoting principles within the context of family caregiving at the end of life (Stajduhar, Funk, et al., 2010), an approach that incorporates health promotion, community empowerment and development and partnerships with service organizations (if they are available) will be crucial to support carers in resource poor countries.
Family care work for dying individuals presents distinct challenges and is clearly associated with economic, social, cultural, gender, and religious forces. For the most part, the contributions of these carers are uncompensated and under-recognized despite considerable academic knowledge on the risk of negative social, financial, emotional, and physical impacts of providing care to dying individuals. Care demands can be particularly onerous towards the end of life, and emotional stresses particularly high as family members grieve successive losses, awareness of impending death; and an uncertain future. For family carers outside the ‘mainstream’, the challenges are exacerbated. Yet, the social history of dying indicates that families have always cared for each other (Kellehear, 2009). Perhaps we have something to learn from those family carers not in the ‘mainstream’—those who are socially diverse. In doing so we may, in fact, become more creative with the ways in which we serve family carers at the end of life.
◆ Payne, S., and her colleagues from the EAPC Task Force on Family Carers. (2010). White paper on improving support for family carers in palliative care. www.eapcnet.eu/Themes/Specificgroups/Familycarers/Taskforcepublications/tabid/732/Articleid/192/mid/1443/Default.aspx
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