Models of Caring from India and Australia and Their Relationship to Social Capital

Abstract: 
When caring is linked to social capital, it is generally assumed that the nature of the relationship is that social capital is a resource that can be used for care work (Beaudoin and Tao, 2008; Jeppsson-Grassman and Whittaker, 2008). When there is inadequate funding of aged care services by the State, the social capital may be seen as a substitute for economic and human capital. Caring, therefore, is seen as a drain on capital, whether it be economic or social capital. However, this does not have to be the case. Aged care services, if thoughtfully designed, can not only consume social capital but also generate it. Examples from India and Australia have revealed some models of elder care which specifically address the generation of social capital. The analysis presented in this paper shows how the key elements of social capital are addressed in each model and assesses their strengths and limitations for community building.
Main Article: 

Introduction

Social capital is the most commonly used term to reflect the collective benefits of community engagement. It refers to the resource that is created whenever people cooperate. Because the term social capital has been used widely and rather loosely, we need to explain how it is defined and used in this research. Following Putnam (1993), social capital is often defined as “those features of social organization, such as trust, norms and networks that can improve the efficiency of society by facilitating coordinated actions”. Bourdieu (1986, p248) defined the concept as “the aggregate of the actual or potential resources which are linked to possession of a durable network of more or less institutionalized relationships of mutual acquaintance or recognition”. For Bourdieu, social capital was a core strategy in preserving and transmitting the cultural capital of the elite. Because all forms of capital can be converted into other (primarily economic) capital, social capital was simply one way of preserving class advantage. However, other theorists, including Coleman (1988) and Putnam (2000), see social capital as a resource (often the primary resource) that is open to all groups and communities. Like other forms of capital, social capital can be realised in tangible outcomes that are quite different from the activities that created the capital in the first place.

Although many studies of social capital take a macro or economic development view where the emphasis is on the functioning of whole societies (Putnam, 2000; Woolcott & Narayan, 2000), the micro position, as presented by Lin, Cook and Burt (2001), focuses on specific networks and the benefits that accrue to the people within them. Whereas the macro and developmental approaches take a normative position that social capital is a social good and often use methods involving attitudinal surveys, in the micro approach the outcomes are a matter of empirical investigation and attitudinal data is usually rejected as too subjective (Adam and Roncevic, 2003). Although there are many debates about the concept, evidence is mounting that associates high social capital with many desirable outcomes such as lower crime rates, fewer school dropouts, higher productivity and economic development (Leonard & Onyx, 2004; Putnam, 2000). Certainly, there is evidence that social capital is capable of producing a variety of positive outcomes, beyond economic advantage, such as improved health and well-being (Halpern, 2005). Because social capital depends on people’s voluntary involvement, all forms of social exclusion or forced involvement damage a community’s potential store of social capital. Almost all references to social capital associate high levels of social capital with strong networks with numerous interconnections between members. Other frequent themes are high levels of trust and reciprocity, strong social norms, and social agency (Onyx & Bullen, 2000). So, if caring is to contribute to social capital, it would need to be organised in such a way that it can assist in the creation of wider or stronger networks. Ideally, it would also build trust, reciprocity, adherence to social norms, and facilitate social agency.

When caring is linked to social capital, it is generally assumed that the nature of the relationship is that social capital is a resource that can be used to support care work. For example, Beaudoin and Tao (2008) examine the support that carers receive through on-line chat rooms and how this helps them deal with stress and depression.  Jeppsson-Grassman and Whittaker (2008) studied the support given to the frail and dying by their parishes and found that support was provided only when there was a personal relationship with the minister or inner core members of the church. In analyses of social support, the emphasis is on who a person can call on for help if needed. It is generally assumed that caring for frail, aged and dying people will not contribute to building the social capital of the wider community.

There are a number of possible reasons why the reverse relationship has not been widely explored. One is the failure to recognise the possibility that caring can contribute to social capital because the emphasis in caring research has been on the needs of the carer or the person in need of care rather than on the impact on their local community. The other reasons relate to the impediments to social capital created by certain systems of caring. It involves the recognition that the way caring is usually organised can place barriers for the growth of networks, voluntary involvement, reciprocity, trust, norms or agency.

First, it must be acknowledged that the building of social networks that are so important for social capital may be negatively affected by the restrictions that most care situations place on clients and carers. Care is often associated with a reduced ability to engage in the community and develop social networks both for the older or disabled people and often for their careers. Old peoples’ Homes are seen as sad places to be avoided whether as a worker, a visitor or as a client (Minichiello et al, 2005; Nay, 2004). Unpaid caring work within the Home can be a barrier to community participation for many people, mainly women. In Australia, Leonard and Burns (2003) in a comparison of different types of unpaid work found that caring was the most likely to be associated with participation in the private, as opposed to the public sphere and with a low sense of personal agency. Further, Zapart, et al., (2007) found that caring had a negative effect on both a carer’s family and social life. From a study of Bangladeshi women in London, Ahmed and Jones (2008) argue that caring is particularly isolating and disempowering for women of minority cultures, thus reducing their networks and social agency.

It is important to note that although people prefer the comfort and familiarity of their own homes, they can be quite lonely and isolated with only the visits from service providers for company (Leonard & Johansson, 2008). The restrictions on carers are also likely to be greatest when the person being cared for is less able (Sand, 2000). Services for the care recipient, such as access to day care, community transport, and Home help, as well as respite services are all important for relieving the carer’s isolation but demand for services is much greater than the supply. Although Australian government reports a steady increase in funding for services for people to stay at home, these increases have not been as great as the increase in costs and so there is a high level of unmet need which has now reached 50% (NCOSS, 2008).

The second barrier to the generation of social capital through caring is when there are no social norms to encourage caring in general. Such norms are discussed within moral philosophy where caring, and an ethics of care, based on moral responsibilities in personal relations have been fore-grounded. The argument is that caring for each other is an important part of life and as human beings we need to both give and receive care. Relations in which people have to take care of another person or where reciprocity is shown help us to develop our moral capacities (Wœrness, 2007). Early theorising, for example, Noddings (1984,) focussed on the values of love and reciprocity. With greater recognition of the complexity of modern society, the theories about caring have become more multifaceted. Contemporary discussions on the ethics of care include values such as gender equality (Larrabee, 1993; Cancian & Oliker, 1999) and diversity (Torres 2006).  Although this ethic of care is presented as an ideal, with no one pretending that all care-work conforms to this model, such a norm must be accepted to a certain extent to foster a climate of caring. By emphasising interdependence rather than independence (Kittay, 2005), the ethic runs counter to the ideology of liberal individualism which dominates many western societies (Augoustinos, Walker & Donaghue, 2006). Working at the ethical level also deals with the difficult dimension of reciprocity. Reciprocity is seen as an important element for social capital (Leonard & Onyx, 2004), but clearly frail or terminally ill people will not reciprocate the care they receive. Sometimes care of a parent may be seen as reciprocating care received as a child, however, when reciprocity is viewed in more general terms, carers often recognise that they may be the beneficiaries of a more caring community: such as in the common phrase “What comes around goes around”; an attitude which is congruent with a general ethic of care

A third and somewhat contradictory issue is that the pressure to care may be a barrier to the requirement that social capital is generated by voluntary activity. The pressure to care, however, is likely to increase and, despite thirty years of feminist critique of the exploitation of women (Waring, 1988; Baldock 1998), most of the carers are likely to be women. The increase is likely because of the combined effect of ageing populations, the deinstitutiona-lisation of care and a decrease in governments’ ability to fund services. In Australia, for the years 1996 to 2007, governments, have had a right-wing agenda of decreasing people’s expectations and reliance on social services. A major incentive for the move from institutional to community care has been financial. There are 2.3 million people in Australia who, as a primary activity in their life, provide long-term care to a loved one. Carers contribute over $20 billion to the Australian economy and this unpaid workforce is estimated to be about five times the paid workforce, in terms of full-time equivalents (Palliative Care Australia, 2004). There seems to be a double standard with women expected to manage both caring and paid work (Leonard & Burns, 2003). It is not uncommon for caring to be the reason women leave the paid workforce.

A further barrier to the generation of social capital through caring arises from the increased professionalization of care. The effect of top heavy medical models is that the people in need of care and their families experience a loss of agency which is necessary for generating social capital. This trend is particularly marked at the very end of life when palliative care services are needed. Stjernsward (2005) argues that there has been an over-emphasis on medical interventions and that meaningful palliative care requires a combination of socioeconomic, cultural, and medical solutions. The cultural and socio-economic factors are equally or even more important to the experience of dying, than the purely medical. Additionally, a growing number of recent reviews have noted that future policies and clinical practice need to focus on empowering family members and providing community education about end-of-life care (Gomes & Higginson, 2006; Tang, 2003).

Despite the obstacles, it is possible for caring to be organised in such a way as to develop social capital.

Example 1

India: Neighborhood Network in Palliative Care (NNPC)

The NNPC was developed in the state of Kerala in Southern India in association with the Department of Medicine, Medical College and the Institute of Palliative Medicine in Calicut. One of the authors had the opportunity to visit the NNPC in February 2009. This visit was part of the 1st International Conference on Public Health and Palliative Care and it involved meeting people who manage the state-wide program and visiting volunteers in local communities.

The NNPC program grew out of attempts to develop a sustainable and community led model of long term care and palliative care in local communities. Local community members are selected and trained to both identify and actively support the chronically and terminally ill people in their community and to link these community members to primary health care services in their area when required. There are over 50 units and over 450 NNPC volunteers in Kerala like the one visited in Koyilandy. In 2008, the Koyilandy Palliative Care Society had over 100 volunteers and registered 746 new patients, serving between 50-100 patients each day in the medical clinic.

The volunteers are responsible for all aspects of the delivery of the NNPC program. They take responsibility for the administration, planning, and fundraising, running the day to day activities in the clinic, organizing psychosocial, practical, and financial services, the donation and distribution of food. Volunteers come from all classes and religions, and there were a large number of young people aged 18 and 24 who played integral roles in the program including – volunteer coordinator, treasurer, and food collection and distribution. As noted by Kumar (2005), “A spirit of social cohesion, social support, social justice, and democracy in the community are the qualities that sustain NNPC programmes”, and this was evident by the way community members came together to support each other, and that patients and their carers consider the volunteer as “family”.

The other surprising aspect of the visit was the many primary and high school communities that supported the Palliative Care Society. Many schools celebrated Palliative Care Day and are instrumental in fundraising and collecting food donations all year round. Furthermore, the children and young people expressed both pride about their contribution and a sense of responsibility to the sick and elderly in their communities. They demonstrated their commitment to the work of the NNPC by electing class ambassadors and by regularly talking to their classmates about the significance of caring for each other.

The Palliative Care Volunteers didn’t seem like “volunteers”, but members of the community that had been mobilised into citizen action. People used the words “duty” “honour” and “responsibility” freely when they talked about why they volunteered with NNPC and because volunteers and patients are truly neighbours, relationships and networks were built and strengthened. A potent aspect of this community building model is that it has demonstrated a means to enable and empower local communities to organise themselves to care for each other. As noted by other authors, it is a movement that is rich in social or political capital and high levels of trust, reciprocity and good community networking (Kumar, 2005).

In Australia and other developed countries, the culture of volunteering in palliative care revolves primarily around the medical model and allied health services (Paleri & Numpeli, 2005; Kumar & Numpeli, 2005). In Kerala, the clinic relies on community members utilizing and mobilizing local skills and resources, without it the part-time doctors and nurses could not function and would be overwhelmed by need. Volunteers in the NNPC are not an extension of the professional palliative care teams like they are in Australia, but are the reason it exists because they are central to the planning and administration of the program.

One man who was being cared for at home had developed a chronic spinal condition from a workplace accident that had left him with multiple physical injuries and a mild to moderate brain injury. He was being cared for by his mother, grandmother and an aunt, in a bed that had been placed in the living room of the family home. The family, through an interpreter, described the relationship with the NNPC volunteers as “family”, they talked about the help from the volunteers, the clinic nurses that visit and the practical support with equipment like a wheelchair. In Australia, this young man would most likely be in a rehabilitation program, and similar to the experience of previous authors (Graham and Clark, 2005) who have visited the NNPC, it was an experience that required an open attitude from an observer used to a professionalized service-delivery model of healthcare.

Furthermore, while the NNPC model has been criticized as having an approach that is largely dependent on the social and political environment of Kerala, the principles of social inclusion, community development and participation are being utilized successfully in other developing countries such as South Africa ( Dinat, Ross and Ngubeni, 2005).  In Australia, the man visited, would likely have multidisciplinary team support such as a social worker, psychologist, rehabilitation specialist and access to an inpatient facility. The level of citizen participation is not readily encouraged under the same social agenda that openly acknowledges the link between both community participation and empowerment, with health and community well-being outcomes such as mobilizing caring networks that build social capital.

Example 2

Australia: The Home Hospice Community Mentoring Program

Home Hospice is a Social Venture based in Sydney, Australia. It exists to create social change around both experiences and attitudes to death and dying. It offers support to the carers of people who are dying so the terminally ill person can die at home. It has been in operation for 28 years, using the community development approach which provides a mentoring program for carers of loves ones living with a terminal illness. Information about the Home Hospice was obtained from Home Hospice publications, an internal evaluation of the service, Home Hospice personnel, and a workshop involving Home Hospice volunteers, people who had experienced the program, representatives of the Cancer Council and academics with expertise in social capital, which was recorded by a designated note-taker.

The Community Mentoring model starts with the recognition that 80 percent of terminally ill people wish to die at home. Although up to 90 percent spend most of the final year of their life at home, 70 percent die in institutions (PCA, 2004). It appears that carers experience both high levels of stress and considerable satisfaction and benefits from caring for terminally-ill loved ones ( Zapart, et al., 2007; Aranda & Hayman-White, 2001; PCA, 2004). The Community Mentoring Program (CMP), therefore, works to reduce the stresses of caring so the carer can experience the benefits and the terminally ill person can die at home as they wish.

The Home Hospice model takes an explicitly community development approach. Their model “is about education and learning, building community, developing and strengthening the bonds between people such as family, friends and neighbors…[and] is about building the capacity of the community to care” (Home Hospice, 2008). The program has two very clear short-term goals: one is to empower and enable carers; and the second is to engage, connect and mobilize the personal community of the carer to share the caring experience and familiarize them with dying.  If able to achieve these two short term goals, the CMP will achieve the greater long-term goal of more people dying at home and, hence, more people becoming familiar with dying that is experienced as a community-led event. The establishment of networks and development of trusting and caring relations are important goals of community development programs at end-of-life (Kellehear, 2007).

The program is designed to complement rather than replace other essential services being used by the carer and their loved one, including other volunteer services. The program’s focus is, therefore, on the “informal” volunteers that exist, waiting to be mobilised, in the carer’s personal community.  It provides  volunteer ‘community mentors’ who are trained by Home Hospice and have themselves cared for someone living with a terminal illness. 

Mentors, once invited by a carer, act as a guide and support person, and the role of the mentor is that of a knowledgeable friend. If and when it is desired by the carer, the mentor will coordinate a meeting of neighbours and friends to enlist their support to help the carer. The mentor helps the carer to make a list of suitable people then organises the network of friends, family and neighbours, as well as providing education and a context for this personal community to be involved in the care of a person dying at home. The majority of people do have connections with neighbours, friends and family who could help, but people feel they do not want to intrude. One mentor reflected that “The gathering together of friends – something seems to happen after that. It changes something for the dying person as well. The issues around burdening the family tend to settle after these meetings. The way people learn to accept help is important – the trust factor”. The carers hand over responsibility to the family and friends. On average, these personal networks comprise of 14 people and can be as large as 35 people (Home Hospice, 2008).

The building of social capital begins when neighbours and friends come together. Although they all know the carer, they do not necessarily know each other. Networks can also be extended as people take on new roles, for example, a task such as collecting children from school will bring the supporter in contact with the school, which might be a new connection. It is clearly a program that requires a high degree of trust and existing relationships can be renewed and strengthened when people work together on a project that is as important and emotional as providing a support network for a person who is dying. The program also aims to create new norms around the care of the terminally ill. Being part of a caring network, may bring a wider range of people to a new understanding of caring for dying people and increase the acceptance of dying as part of life not something to shun.

Discussions

Although there may be many ways to grow social capital through caring, the two examples presented here have been developed from a community development focus. Community development is often deliberately organised rather than haphazard as our two examples show, and focuses on both personal growth, and change or development of the community and local institutions ( Kenny, 1994). It has three significant features: decision making by those most affected by outcomes of the decision; personal empowerment and control by individual citizens over their own life; and the development of ongoing structures and processes by which groups can meet their own needs. As noted by Kellehear (2005), community approaches to end-of- life care “are not new services”. They are community members acting toward each other in new and constructive ways to improve their own capacity for end-of-life care. Any professional rationalisation of these changes into simpler forms of direct services provision is a regressive and important threat to community empowerment. Obviously, the themes of people exercising collective agency and organising themselves suggests a strong parallel between community development and social capital.

The examples discussed in this paper demonstrate aspects of both successful community development approaches to care and the contribution of caring to social capital in geographic communities. They are developed as complementary to professional services for the aged and terminally ill and all work towards developing a culture of caring in the community, a culture which transcends gender and age. Embedded in local communities, the examples enable becoming old and/or terminally ill to be a community based, public event in life. At their core, they also aim to build relationships and reciprocity by encouraging and supporting community members to take responsibility for each other at various life stages. And, they have an element of celebration, of having fun, of people enjoying experiences and caring work together. In working in these ways, there is a trust that the community possesses the necessary resources to care for itself and in doing so networks and relationships grow and develop.

Home Hospice in Australia and NNPC in Kerala are similar in their support for the terminally ill.  There is, however, a key difference, in Australia terminally ill people have greater access to professional services but may not have the informal support network a personal community can provide, whereas in Kerala people may have personal networks and limited access to healthcare professionals. One type of caring is not a substitute for the other.

Conclusion

Caring is a complex activity, however, with the potential for deep human connection and personal growth on the one hand and for depression, isolation and exploitation on the other hand. Within an ethic, and culture, of care there must be attention to the way that caring is organised, supported and recognised which can make the difference between a positive and a negative experience for both the carer and the terminally ill or frail person receiving care. Social capital may be a good litmus test for contexts of care because social capital generation requires contexts that are not coercive, involve community networks, trust and shared values around caring and allow for the exercise of agency.

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