Partnerships in Care
Palliative and Home Care in Relation to HIV/AIDS: Exploring the Relationship Between Shared Confidentiality, Spirituality and Faith, and Expansion of Local Response
Development of palliative and home care for people living with HIV/AIDS has differed in the Northern and Southern Hemispheres. The lack of resources in the Southern Hemisphere has been one influence. Yet, whether North or South, the connection of palliative and home care to neighborhood environments presents an opportunity to reduce stigma and strengthen social supports. These activities are crucial to building effective partnerships. Spirituality and faith are other ways that partners of goodwill can connect with people in their homes and neighborhoods.
The Encounter with Spirituality and Faith
Of even greater significance than the observed relationships within a home or a neighborhood is the usually unobserved one of shared spirituality and faith. Spirituality, faith, and hope exist within a construct of shared intimacy or confidentiality in the home and neighborhood environment. Spirituality in home and neighborhood settings creates the capacity for honest recognition of loss and for moving from denial to truth, from burden sharing to burden bearing, and from fear to hope.
It has been our experience that we have grown in faith along with the local communities we serve in ways that are mysterious yet enriching.
How can a health team enter the heart, soul, and spirit of a community? First, the community must extend the invitation. The team must have an appreciation of local strengths and a belief in the capacity of local people. Moreover, they must acknowledge a spirituality that is linked to the future as well as the past and present. This approach generates hope for quality of life and allows for remembering and continuity even in the face of accumulating loss. It also deepens the understanding that community, relational, and spiritual health are inextricably linked.
Shared Confidentiality within the Local Response
Home care for people living with HIV/AIDS in resource-poor settings was first developed by The Salvation Army at the Chikankata Hospital and surrounding community in 1987 (Williams, 1990). Their approach to home care was not just clinical—it was holistic (Campbell and Rader, 2001). Home care is effective in reducing stigma. It builds the patient’s self-confidence, promotes involvement of the family, and enhances prevention. Successful home-care teams include not only professionals but also helpers and volunteers from the community and community-based organizations. Home-care teams are characterized by an expression of caring that is distinct from providing care. They are sensitive to the shared confidentiality that normally flourishes within close-knit local communities.
Shared confidentiality within groups frequently exists when potentially stigmatizing issues are at play, such as HIV, domestic violence, and drug abuse. Matters of private significance to people and their immediate family and friends are often shared with other people in the immediate living environment. Confidential sharing is characterized by issue-centered confidentiality in this group context, rather than by person-centered confidentiality.
After a year in the Chikankata setting, Salvation Army staff saw clearly that local neighborhoods could take charge of their own futures. The primary catalyst was integrated home care and community counseling for support and change (Campbell and Rader, 2000). The foundation for linking care to prevention was primarily relationships among family and community that generally existed well before the encounter with HIV. These connections had often been sustained within a context of shared confidentiality.
Shared Confidentiality: Pathway to Stigma Reduction
Moving From HIV Stigma to Normalization
Stigma can be dissolved, and normalization of a community’s views about HIV can occur. We observed the normalization process when a community leader invited a hospital-based team to talk with him and his colleagues after his son, who had AIDS, committed suicide. The suicide was a far greater cause of shame than the rumor that his son had “the new disease,” and the entire village felt the impact of the son’s suicide. But the experience was the catalyst that allowed them to come forward and name and discuss the issue of HIV. The story of this community had district, national, and international significance in the subsequent years. Often, organizations had implemented HIV programs without including families or the community, assuming that stigma was a permanent barrier, but the Chikankata example showed that this did not have to be the case.
Home care is linked to neighborhood-based prevention. It relies on a relational approach for this effect.1 Home care is more effective when an HIV-positive person is viewed as an agent for change, and when there is a team approach that includes families and members of local communities. Teams need to work in a multi-disciplinary, fluid, and integrated way by responding to a local situation with information, pastoral care, counseling, clinical care, and training. Teams must always understand the nonverbal but palpable neighborhood interest in relationships.2
Going to Scale Through a Local Community and Organizational Capacity Development Approach
(Human Capacity Development)
Integrating neighborhood-building processes into program design is often the missing link in human capacity development. Integration should occur not only in terms of structures but also in terms of individuals’ capacities. This view shifts a culture from expectation of and demand for services to one in which people participate in their own health. The diagram that follows illustrates the connection between local capacity (of families, of communities) to respond by caring, supporting, and making change happen; and organizational change. As facilitation approaches are embedded within all levels of the organization and as the systematic practice of learning from local experience and action happens by people of the organization, horizontal transfer of capacity accelerates in quantity and quality, and policy is informed through embracing the reality of life in communities as well as health institutions.
Expansion of Local Response: Through the Care to Change Linkage
Salvation Army Health Services has coordinated training in 36 countries since 1990, using a concept transfer process. This relational approach to home care includes clinical care and has been shown to be the catalyst that initiates community-determined action, change, and knowledge transfer (Campbell, 2002). Teams from the local communities and the Salvation Army regional programs have conducted research demonstrating that “scaling out” can occur by linking care with people in homes to a wider neighborhood response through activation of shared confidentiality (Salvation Army Africa Regional Team, 2001).
A Working Culture of Facilitation
Health professionals involved in palliative and home care soon learn that family and community must be part of the process. Burden sharing in the context of HIV is effective when the belief that families and communities can respond is matched by facilitation within support organizations at multiple levels.
A good example exists in Zambia through The Salvation Army’s partnership with the UNAIDS Technical Network Development Unit, Geneva, and cooperation with the Zambian National AIDS Council. The national facilitation team has developed a process for support and learning. This process works with all organizations within the country to change the environment from one in which provision of assistance from outside organizations is expected, to one in which responsibility for national participation in a future is owned by everyone.
The prevailing working style of organizations allows communities and families to feel comfortable participating in the support process. The learning process creates an atmosphere in which communities and community members feel confident that they can develop the skills required to carry out home care for HIV-positive individuals (Campbell, Rader, and Moodie, 1999).
Learning From Local Action and Experience
If local implementers and community-based organizations can learn about scaling out through shared confidentiality and reconciliation in their families and neighborhoods, then it is possible and necessary for national and international organizations to learn similar concepts (Lucas, Rader, Duongsaa, Mphuka, and Campbell, 2002).
Home care for the purposes of support, palliative care, and improved prevention provides an important learning environment for health professionals and policy makers. It has provided a strategic learning ground that has led to successful health reforms in countries like Zambia and Uganda. Decentralization of the care burden increases the burden for those working at the local level while diminishing the responsibility borne at the central level. Learning through local action and experience nurtures organizations at both the local and central levels to share responsibility.
There is a great difference between participation and observation. It is possible to be sympathetic and to do things for people as an observer, but that approach is insufficient for developing sustainable results. HIV/AIDS is an issue in which problems accumulate if unattended. HIV/AIDS and associated challenges do not disappear from families simply because a member has attended a clinic or received a home visit from an outreach team. People must live with the epidemic, and we need to be a part of the ongoing conversations about loss, hope, and a community’s future.
These ongoing conversations are inextricably linked to a yearning for connectedness and for a future that is unseen as well as seen. We are speaking of the experience of faith—reaching out for something beyond what human beings can touch and articulate—something bigger than what we are. Faith is about an innate desire to touch the essence of creativity and creation. It is about believing that we can always be better than what we feel. It is of the moment. It recognizes people in a spiritual situation—where God is, and where hope is glimpsed. Such faith is not naive; it is realistically grounded in honesty, the recognition of loss and pain, and spiritual consciousness.
Conclusion
Resource-poor settings are usually relationally rich. Capacity for survival and growth through conflict resolution, reconciliation, development of community memory, and future social security is evident throughout the HIV/AIDS-related experience, especially in home-based and palliative care. The term “AIDS competence” has been coined to speak of the human capacity to adapt and respond in the face of new and extraordinary challenges (UNAIDS, 2000; Lucas, 2002). Integral to these successes is the strength of spiritual connection and dynamic personal faith (Campbell and Rader, 2001).
Currently, a great gap exists between the resource-poor settings of the South and the more affluent North’s somewhat detached approaches to care. Organizations everywhere can learn many valuable lessons by interacting with people courageously facing their own lives and deaths.
Many questions remain, however, about the ways in which the North might grasp these lessons. How can linkages between care and prevention provide a learning ground for the North—especially given the evidence that local communities can respond to and be enlivened by a shared spiritual sensitivity? In what way can the community response apply not only to HIV/AIDS but also to other forms of health-related problems requiring supportive and palliative care? How does the response apply to human capacity development, expand the local response and affect organizational transformation?
All of us, especially those of us in home-based care, have the opportunity to participate in the exploration of palliative care as the core foundation for realizing visions and actions that energize instead of exhaust. Palliative care will continue to be a key co-factor in the development of a meaningful response to HIV/AIDS and other life-threatening illnesses.
References
1 In the United States, in Philadelphia, a pre- and postnatal home-based care approach to maternal and child health situations of low-income women will be linked to family and neighborhood counseling. The goal is to facilitate important family and community counseling for self-care, mutual care, and exchange of information about risk behaviors. Return
2 In a spontaneous village role-play in China, a family depicted the normalcy of community knowledge and shared responsibility for behavior change by showing how they would include in their family situation a married HIV-positive son, yet would expect him to change his behavior—and would enlist neighborhood support, the agreement of the son being implicit. Return
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