Question

• Identify 1 resource in your community that addresses the chronic disease management needs of the population.
• Who is involved in this community-based model for the care of adults? MDs, RNs, dieticians?
• Describe the role of nurses in this community-based model of care.

Answer 1

1) Kerala, in India, has shown enormous progress in the area of palliative care (PC). Most of it is due to the network of community initiatives in PC in north Kerala. This network, called Neighborhood Network in Palliative Care has more than 60 units covering a population of more than 12 million, and is probably the largest community-owned PC network in the world. The evolution and functioning of this network and the lessons learned are discussed.We are all born to die. But most people die in misery. A huge percentage of this misery is unwarranted, as it can be settled with good-quality palliative care(PC). In fact, the emergence of PC in the previous century was a humane reaction toward marginalization of the terminally ill and the incurable by the existing health care system. It has been noticed that in spite of the advances in medicine, the rapidly increasing cost and commercialization of health care services is making proper health care less accessible to many.People living with incurable and chronic diseases in resource-poor regions are often the major victims of this system. Only 20% of chronic disease deaths occur in high-income countries whereas 80% occur in low and middle income countries, where most of the world's population lives. The age specific death rates from noncommunicable diseases are higher in developing countries than developed countries.
Of the 56 million people dying annually, 44 million are in developing (resource-poor) countries.Thirty-three million among them will benefit from PC services.Any strategy reaching out to the marginalized obviously has relevance to the developing world situation, where a large number of patients lack access to basic services that would have allowed them to both live and die with dignity.The disparities in income intercountry and intracountry are enormous. The annual income of the richest 500 people in the world exceeds that of the poorest 416 million.It is precisely those who need health care most who are the least able to afford and obtain it.The government expenditure on health is extremely inadequate in almost all the low and middle income countries.Patients in these countries rely heavily on out of pocket financing for basic health care, resulting in a high prevalence of catastrophic payments and a large poverty impact of these payments.The present PC services cater to only a minority, very often providing support to a small number of patients.The challenge for PC workers in the developing world is to develop a culturally and socioeconomically appropriate and acceptable system for long term care (LTC) and PC that is accessible to most of those who need it. A social experiment from Kerala (India) has been trying to address this issue through organized interventions by laypeople in the community.

The first PC experiment with community support in Kerala was initiated in 1993 by a nongovernmental organization.The unit had an outpatient clinic and home care services. The community's participation was limited to the involvement of a few volunteers in nursing and associated chores within the institution and to donation of money.Although some of the resources came from the community, involvement of the community in decision making was minimal. The recognition of the inadequacies of this model, both in terms of coverage and in terms of other dimensions of total care, led to discussions and experiments at the organizational level. It was these attempts to develop a service overcoming the defects of the earlier model that resulted in the formal initiation of a project known as the Neighborhood Network in Palliative Care (NNPC).

NNPC, Kerala, India
The NNPC is an attempt to develop a sustainable community owned service capable of offering comprehensive LTC and PC to most of the needy. In this program, volunteers from the local community are trained to identify problems of the chronically ill in their area and to intervene effectively, with active support from a network of trained professionals. Essentially, NNPC aims to empower local communities to look after the chronically ill and dying patients in the community. It is inspired by the concept of primary health care described by the World Health Organization in the Declaration of Alma-Ata: “Primary health care is essential health care based on appropriate and acceptable methods and technology made universally accessible to individuals and families in the community through their full participation and at a cost the country and the community can afford, to maintain the spirit of self reliance.”Over time, this network has replaced the earlier hierarchical doctor-led structure in PC in northern Kerala with a network of community, volunteer led, autonomous initiatives.

Community Participation
Community participation in different programs is usually of two types depending on the perspectives.What most programs (including the majority of PC programs) mean by community participation is only utilization of community resources (money, manpower, etc.) to supplement what is otherwise available for the program.Volunteers in such programs are asked to fill certain preset “slots.” They do not play any major role in planning, evaluating, monitoring, or modifying the program. On the other hand, community participation can also be a tool for empowerment, enabling local communities to take responsibility for identifying and working together to solve their own health and developmental problems. NNPC is an attempt at such a community development program in PC. This approach, in essence, sees participation as an end, where the community or group sets up a process to control its own development.

Under the program, people who can spare at least two hours per week to care for the sick in their area are enrolled in a structured training program (16 hours of interactive theory sessions plus four clinical days under supervision). On successful completion of this “entry point” training (which includes an evaluation at the end), the volunteers are encouraged to form groups of 10–15 community volunteers and to identify the problems of the chronically ill people in their area and to organize appropriate interventions. These NNPC groups are supported by trained doctors and nurses.NNPC groups usually work closely with the existing PC facilities in their area or build such facilities on their own. Volunteers from these groups make regular home visits to follow up on the patients seen by the PC team. They identify and address a variety of nonmedical issues, including financial problems, patients in need of care, organizing programs to create awareness in the community, and raising funds for PC activities. Community volunteers act as the link between the patient in the community and the health care provider in the institution.NNPC does not aim to replace health care professionals with volunteers. Instead, what is being attempted is to supplement the efforts of trained doctors and nurses in psychosocial and spiritual support by trained volunteers in the community. Groups of trained volunteers are tied to PC professionals and health care facilities in their communities. The action plans clearly define individuals' and institutions' roles and responsibilities. In between the reporting to the outpatient clinic/inpatient unit by the patient/family, the local volunteers visit the patient at home. Such visits supplement the visits by the home care team. Such visits result in better emotional support, better compliance with medical/nursing instructions, earlier reporting of symptoms to the doctor, and social, including financial, support. In addition, in places where NNPC is active, patients in need are identified early. The program is characterized by a focus on care at home with outpatient clinics and inpatient units acting in support.Attention to social and emotional well-being as much as physical health.Mobilization of resources locally.The building up of skills and confidence in the local community.A network with more than 4,000 volunteers, and 36 doctors and 60 nurses looking after about 5,000 patients at any point of time. All the doctors and nurses in the network are those employed by the community initiatives.Within less than five years, the NNPC initiatives have resulted in the establishment of 68 community based PC initiatives in northern and mid-Kerala, covering a population of more than 12 million; an estimated coverage of more than 70% in PC and LTC in the region compared to a national average of around 1%; more than 90% of the resources for the projects being raised locally through small donations of less than 15 cents; expansion into “nontraditional” areas in PC, e.g., PC for patients with nonmalignant conditions, including chronic psychiatric disorders; and active involvement of the local government in providing care for the chronically ill and incurable patients in the region.

2) RN is involved in this community based model for the care of adults.

3) In community-based nursing, nurses implement various proactive programs in areas such as health education, disease prevention, and restorative care that can lead to healthier communities.
Community based nursing involves the small term and long term care of individuals and families to give strength to their capacity for selfcare. Care takes place in community locations such as home and clinic. The main focus is nursing care on individual or family.RNs performed nine general functions in these contexts including telephone triage, assessment and documentation of health status, chronic illness case management, hospital transition management, delegated care for episodic illness, health coaching, medication reconciliation, staff supervision, and quality improvement.Examples include prenatal care programs for the uninsured and educational programs to ensure the competency of public health professionals. Population based public health programs focus on disease prevention, health protection, and health promotion.