Correspondence Address: Source of Support: None, Conflict of Interest: None DOI: 10.4103/0973-1075.16637
Source of Support: None, Conflict of Interest: None
Keywords: community palliative care
The neighbourhood network in palliative care (NNPC) is an attempt to develop a sustainable 'community led' service capable of offering comprehensive long-term care (LTC) and palliative care (PC) to the needy in the developing world. In this programme, 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 at empowering local communities to look after the chronically ill and dying patients in that community. It is inspired by the concept of primary health care described by the World Health Organization at 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 community through their full participation and at a cost that the country and community can afford to maintain in the spirit of self-reliance.' (WHO, 1978)
Palliative care aims at 'total care.' Chronically ill people are in need of regular care for the rest of their lives. But putting the concept of 'total care' with continuous support in physical, psychosocial, and spiritual realms into practice through institutionalized care is very difficult. Palliative care centres usually offer a patchy service through which the patient and family has access to the facilities available for the control of physical symptoms and/or for emotional support for a few hours.
When we consider the global situation, institution-based models of palliative care may not be realistic solutions. Of the 56 million people who die annually, 44 million are in developing (resource poor) countries. Thirty-three million of this group would benefit from palliative care services. The present palliative care services in most regions of the world cater to a minority, and often end up giving a lot to a few. The challenge before palliative care workers in the developing world is to evolve a culturally and socioeconomically appropriate and acceptable system for long-term care and palliative care that is accessible to most of those who need it.
Patients with incurable diseases have medical and nursing problems, but these are only a part of a complex situation, which cannot be addressed solely by a doctor/nurse/palliative care center. Issues associated with chronic/incurable illness are basically social problems with a medical component. These issues need to be handled by the society. For this to happen, the community should be in charge of the programme.
What most programmes (including the majority of palliative care programmes) mean by community participation is utilization of community resources (money, manpower, etc.) to supplement what is otherwise available for the programme. Volunteers in such programmes are asked to fill certain preset 'slots.' They do not play any major role in planning, evaluation, monitoring, or modifying the programme. On the other hand, community participation can be an empowerment tool through which local communities take responsibility in identifying and working together to solve their own health and developmental problems. Neighborhood network in palliative care is an attempt at such a community development programme in palliative care.
The programme starts with an exploratory session by a community volunteer, who talks about palliative care. Those who show interest and who are willing to spend at least 2 h every week helping patients in their area are enlisted and given basic training in groups of 10-20. Those who successfully complete the training and are willing to continue are encouraged to sit together and make an action plan for chronically ill patients in their area.
Volunteers who get involved in 'hands on' patient care are offered further training programmes such as 'Train the trainer' sessions, communication skills training, basic nursing skills training, etc.
The basic training programme is 16 hours of interactive theory sessions and a minimum of four 'clinical days' with the home care team. The topics covered include
1. Introduction to palliative care: this session discusses the philosophy of palliative care, relevance in the region, placing palliative care programmes in the 'developing world' context, etc.
2. Role of community: this session explores the role trained and untrained nonprofessionals can play in making the life of chronically/incurably ill patient more comfortable. The practical issues, possible hurdles, and other difficulties are discussed.
3. Basics of cancer: since patients with incurable cancer continue to be the major group in need of palliative care, the prevention, early detection, treatment modalities, and palliative care for cancer are discussed in detail by a doctor in the team.
4. HIV/AIDS: the basics of HIV/AIDS, the social stigma, ways of overcoming it, etc. are covered.
5. Assessment of patients: this session reaffirms the idea that all patients with incurable/chronic diseases will have many nonmedical problems. Assessment of patients' problems needs a 'wholistic approach' specific to the individual and not just a list of physical symptoms.
6. Communication: in a 5-6 h session involving group work and role plays, the trainees are exposed to main issues that arise while communicating with patients.
7. Nursing issues: a nurse discusses basic nursing care in relation to chronically ill or bed-ridden patients.
8. Home care: a discussion of practical issues related to visiting a patient at home and interactions with the patient and family.
9. Last hours: a discussion of issues related to terminal care.
10. Assignments and projects: the trainees are expected to complete five written assignments related to various aspects of palliative care during the course. Towards the end of the course, they also sit together to finalize a project proposal based on the problems of patients in their area.
11. Evaluation: there is an evaluation at the end of the course and only those who secure 50% of marks are registered as volunteers.
On successful completion of the training, these volunteers are encouraged to form groups of 10-15 community volunteers, 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.
Neighborhood network in palliative care groups usually work closely with the existing palliative care facilities in their area or build such facilities on their own. Volunteers from these groups make regular home visits to follow up the patients seen by the palliative care team. They identify and address a variety of nonmedical issues including financial problems, identifying patients in need of care, organizing programmes to create awareness in the community, and raising funds for palliative care activities. Community volunteers act as the link between the patient in the community and the health care institution.
Neighborhood network in palliative care does not try to replace the traditional health care professionals with volunteers. Instead, it attempts to supplement psychosocial and spiritual support by adding volunteers from the community who have been trained by doctors and nurses. All the medical work is done by the doctors in the team. The community volunteers do not prescribe medicines or alter prescriptions. They help to create awareness in the community on the risks of altering or skipping medications. Unlike traditional palliative care services, the patient and family receive regular support from the community around them in addition to the medical care, nursing care, and the emotional support offered by the professional palliative care team. The local volunteers make frequent home visits between the visits by home care team or visits to outpatient clinics or inpatient units. Such visits result in better emotional support, better compliance with medical or nursing instructions, earlier reporting of symptoms to the doctor, as well as better social and financial support. In addition, in places where NNPC is active, patients in need are identified earlier.
Neighborhood network in palliative care programmes have been successful in all the districts where they have been launched. In Mallapuram, a socioeconomically backward district in Kerala (population of four million), where the programme was first 'ground tested,' the coverage of long term care and palliative care rose to 70% in 2 years time. Three other districts in Kerala - Wynad, Kozhikode, and Trichur, where the programme has been launched over the last 2 years also show the same steep upward trend in coverage. The programme has recently been launched in Palghat and Kannur districts in Kerala. Areas where NNPC programmes are in operation show an LTC and palliative care coverage much higher than the rest of Kerala (in fact, much higher than anywhere in the developing world where the estimated coverage is 0 to less than 5%). Neighborhood network in palliative care projects are also being taken up in Gudalur in Tamilnadu and in a couple of villages near Guwahati in Assam.
The project has brought together many groups and social initiatives (student groups in the campuses, the literacy movement, cultural organizations, women's groups, teachers' organizations, etc.) on a common platform of working for the chronically ill. Northern Kerala now has active groups of students involved in palliative care in many campuses. Student groups from 40 such campuses have now joined together to form a collective called palliative care in Campus (PCC). About 30 organizations in the region are now participating in NNPC, which has achieved the status of a popular health movement in the area.
The 'first generation' volunteers are now training other volunteers. 'Train the trainer' programmes emphasizing psychosocial support for the patient have been very successful as evidenced by the skills and confidence of the volunteer trainers who have undertaken the programme. All the district programmes and some of the village level programmes now have their own training networks.
External intervention into a community can be problematic. Many well-meaning interventions in the past have inadvertently made local communities less self-reliant. The initiating group was well aware of this possible trap and they involved the local community in all the stages of the process from planning to monitoring. The strategy of NNPC is to work with the people rather than for the people. It was this philosophy of 'ownership to local people,' that has resulted in the success of the programme.
It has been shown that when the neighborhood groups are in charge of the programmes, both expansion and achievement of financial sustainability happen quickly. All the neighborhood groups under the programme have managed to raise the money needed for the delivery of the care locally through small contributions and support from the local government. This economic independence of the programme helps the local communities to be in full charge of the initiatives. Many of these groups later moved on to additional areas of health care such as caring for patients with chronic psychiatric disorders chronic infectious diseases.
In situations, where external funding is needed, NNPC initiatives need it only for initiation. The programmes become self-sufficient in 2-3 years through generation of local funding. Altogether, 80% of NNPC programmes funds are mobilized locally through donations within the community and support from the local government. The advocacy role that the groups play has generated good support from the government in all of the places where the programme is active. Funds from the local community are raised mainly through small donations (e.g., a rupee - about two cents - a day from lower middle class and poor families and shopkeepers, donations from students in various campuses, regular donations from manual laborers, etc.).
The total expenditure for NNPC programmes in 2003 was approximately 12 million rupees (US $ 285000) of which US $ 220000 was from small donations from the massive support base in the community.
Neighborhood network in palliative care is now undergoing an extensive evaluation as part of a 'monitoring - quality control loop.' The areas being studied include palliative and long term care needs in the community, quality of care provided, access to care, and the spirit of social cohesion and support. The aim is to ensure that the needs, the quality of care, and the level of satisfaction are quantified by the community and taken into account in the planning and organizing of care delivery through empowered participatory governance.
Neighborhood network in palliative care is a cost effective option for most of the developing world to develop much needed sustainable services for the chronically ill and dying patients. This experiment assumes extra significance because of the growing number of elderly people and people affected with incurable disease like AIDS and advanced cancer, who have no access to care in the face of rapidly escalating health care costs.
In addition to the large number of patients who benefit directly from the programme, the NNPC programme also builds confidence and trust among individuals in the communities. Community participation in health care activities is a good way to help the growth and development of individuals. The spirit of volunteerism with options for working in a team to identify and improve local issues helps people to achieve an immense amount of self-growth. This has been proved by the approximately 3000 community volunteers including people from all socioeconomic backgrounds and all walks of life - students, pensioners, housewives, teachers, professionals, manual laborers, etc. In addition, hundreds of people have been 'waitlisted' for training.
Neighborhood network in palliative care shows a possible option for palliative care and long term care for the so-called poor communities in the developing world.