Role of the community

Key messages & Research issues

• Stimulating participation is also supporting the spontaneous emergence of evolutions in the community. Chronic Diseases are an opportunity for participation of patients themselves, because of their direct benefit, their complementary expertise and their credibility. There are limits to what we can ask from voluntary actors, especially from informal carers.
• Health Systems, patients and the community are not separate, but linked entities, which can tap resources from each other and in which there is a certain degree of reciprocity. People can take up different roles at the same time, which influences agency and power balances of actors.
• How to create conditions for people to optimise the ‘social capital’ hidden in the community, for the benefit of people? Who is to stimulate and facilitate interaction between different actors in care? How to sustain the involvement of ‘volunteer’ actors?
• What is the effect of patients also taking up care-giving roles to other patients, on themselves, on other patients and on the patient – provider relationships? How does it influence the effectiveness of care models?

The concepts ‘community’ and ‘participation’

The notion of ‘community’ is very shaky and diverse. It often refers to ‘people living together in one place’, but ‘communities’ are flexible constructs and people can belong to different communities at the same time. How do people relate to these communities? There are different conceptual views on participation. Is it a right or a duty? This relates to how one looks at the relation between state and community, which is ideally one of citizenship, in which people have rights and responsibilities. In many settings, strategies for community participation in the health sector have limited success. People show opposition to participate actively, continuously and intensely in plans or programmes designed by government or NGOs and sometimes even withdraw and return the given responsibility. A possible reason is that communities lack the feeling of having control, ownership and decision-making power. The relationship between the organizing party and the population often remains one of dependency, instead of autonomy.

If participation is considered as a right, including political empowerment, then HS should try to support people who are already trying to do something. They should support the emergence of things happening in the community. This also recognizes the fact that people face other problems and priorities than health alone. Emergence puts the focus on planning as a process, and not so much on (predicted) outcomes. It seems to be difficult for public health workers to ‘let things emerge’, instead of planning and organisation of things for a (predicted) future. The community is often regarded as a ‘target’, for example for health promotion or screening, or as a target for resources to be mobilized. In reality, there is continuous exchange between community and the HS and is it not useful to make a rigid separation. Who needs who and who finds resources where, who is responsive to whom and who supports whom?

The challenge is to find the balance in the process of participation between instrumentalist and empowerment / ‘right to health perspectives’ and between a top-down and bottom-up approach: HS trying to tap resources in the community and communities claiming resources from HS. These issues are not unique for CDC, but the aforementioned characteristics of CD make participation not only more necessary but also more possible. Patients have different perceptions and expertise about their condition, their needs and how to deal with this condition than professionals who deliver health and other kind of care to them. A person living with a CD gathers expertise in how to deal with his condition in daily life: he becomes an ‘experience expert’. His expertise is qualitatively different and complementary to that of the professional. The engagement of patients while recognizing and using this complementary knowledge has an added value compared to most task-shifting approaches, in which activities identified and selected by technical people, are delegated to non-professional people.

Actors and functions

In an attempt to structure our discussion about the community, we propose a scheme to classify groups of actors and their relations. These groups each have their own role and can perform functions of CDC in accordance with this role, in which reciprocity is an important issue. Palliative care, psychological support and practical advice are naturally taken up by patients and their families in many communities. Diagnosis and clinical management are tasks of health services. Community organisations could play an important role in primary prevention and guiding people in the appropriate utilization of health services. Actors in the immediate environment can be employers, colleagues. Other community actors are (in)formal leaders and local authorities. The realisation of functions is determined by the local context conditions. For instance, adherence to HIV AIDS care is often organised by health services, but in some villages in Mozambique local patient groups carry out this function. If HS are short of resources, they can create alliances with community groups. As said above, the delineation between the different angles is fluid. Some individuals can take multiple roles, being for instance patient and carer. Patients who organise themselves in groups for peer support and other functions become community organisations. The model visualizes the importance of a balanced development of and interaction between all three vertices of the triangle.

How to make it work?

The central challenge in participation is to create conditions for people to optimise the social capital that is hidden in the community. Who is to stimulate and facilitate the interaction between the actors (brokerage role) and how to reduce the (perceived) capture of processes by interest groups? Fruitful and sustainable interactions are built on trust. The balance between actors will depend on the functions of care focused on and on the context. If there is a strong local health system with a coordinating public health officer, he is probably the initiator. In the Cambodian example, it is a community organisation. Other initiatives in which interactions between different actors is crucial, such as mutualities, often have an external party involved. This actor might, apart from bringing additional resources and new ideas, be perceived as neutral and thus acceptable for other actors.

The experiences in many contexts with community health workers make us doubt the effectiveness of voluntary participation, without any benefit in return. How to organize sustainable involvement of people from the community (patients or general) in the organisation of care? Making them part of a local structure might lead to some kind of institutionalization and durability, but it might also weaken the voluntary and non-professional character which is the strength of many initiatives. Sustainable participation means not only sharing roles but also responsibilities. Research questions are: what are suitable incentives to maintain commitment, how long do ‘volunteers’ last in their role, what is the best profile of ‘volunteers’, what is the effect of making networks between volunteers?

In the last decade, patients themselves have become a resource of volunteers and have been given names of ‘expert patient’, ‘peer educator’ etc. Intuitively, the concept of involving patients in care seems very promising, for several reasons. Patients might have a direct benefit and stronger incentives in becoming a volunteer for their own situation. The success of MoPoTsyo (see below) shows that people feel in charge of the problems and the programme. In addition, people with CD have different perceptions and expertise about their condition, their needs and how to deal with this condition than the professionals and this complementary expertise can be very helpful for other patients. In certain contexts, patients could also be more credible and trusted by the local community than health providers. If patients become care givers, they take up an additional role next to being a patient. The notion of power and agency relating to these combinations and shifting of roles has to be investigated. These hypotheses need to be tested in different contexts. In the Cambodian context, the fact that PEs themselves experienced a state of health similar to the patients they talk to and that they managed to arrive at a better level of functioning is a source of inspiration and credibility, for themselves and for other patients.

Experiences from different contexts

Peer Educator Networks in Cambodia

Cambodia is a Low Income Country (LIC) with a high burden of diabetes and high blood pressure, of which many people (70%) are unaware. The HS is pluriform, but very patchy. Public and private for profit (PFP) health services offer care for acute incidents. There are a small number of private non-for-profit health services and a few, often not well trained, private providers who offer care for CDs. The coverage of CDC is estimated to be maximum 10%. The challenges of CD for the Cambodian HS are to increase access to CDC and to improve the quality of the presently provided CDC. Any strategy developed should take into account the affordability for patients (3-5 USD / month) and the feasibility for the HS, in terms of demands on professional work force capacity. In this context a local NGO, MoPoTsyo, was established to tackle these challenges.
MoPoTsyo has developed community-based interventions which are linked to accredited health providers, by using the human potential in the society. Diabetes patients are trained to become Peer Educators (PE) in their own community. They go into their community, to find and assess new patients (with basic screening methods) and to transfer knowledge and skills in coping with diabetes and high blood pressure, and they facilitate weekly group sessions where old and new patients meet. The screening is an occasion to start a dialogue with the community. The PE and the new patient meet regularly in the first period, to see how the patient can manage his blood glucose levels with lifestyle changes and to arrange an appointment with a trustworthy health provider, if necessary. Patients can receive medication from a revolving drug fund against affordable prices. The PEs form networks among themselves and they are supported by a programme manager. There is a medical doctor attached to the organisation, who trains the PEs and is available for consultation. PE receive a reimbursement of their cost and a modest financial incentive.
The organisation started in an urban area but has expanded to rural area since mid 2007. At end of 2009, it had covered a district area with 133,000 inhabitants. There is one PE in every health centre, covering more than 550 people with diabetes. The PEs had screened 98% of the district population and the results in terms of physical parameters (HbA1c) and coping skills (knowledge and lifestyle changes) are positive. Monthly health expenditure of the people went down and people were satisfied with the programme. On average, a registered patient consults the professional health services 2.3 times per year. The PEs provide most of the services and function as a gate-keeper. In general, one can say that the project works and that it does not increase the burden for the HS. It has not only led to early diagnosis and care for people with diabetes, but also to empowerment of PEs (and patients) with regard to their own disease. Main weaknesses of the programme are the narrow view of health problems; the limited training and subsequent risks or errors by PE which are easily multiplied in the network and the weak coordination with the primary care level. Despite these, it would be interesting to explore if this experience could be extended to other contexts and to other CDs.

Community involvement in health promotion in Venezuela

An experiment is discussed in which community participation for health is tried out at a radio station, also to see whether and how this experiment could be used in future health policy. Observations were made about the process and practices developed and about the actors and their perceptions. More than a thousand reporters contributed to the development of a seatbelt campaign. Having developed it themselves, people report a strong feeling of autonomy in decision-making and ownership, illustrated by sayings like "This radio is ours, it is (owned by) everybody (who) need it” and “We make this radio”. There seems to be a strong group feeling and pride among the reporters, possibly rooted in the values guiding the whole communication process. The relationship between the people participating in the radio experiment and the involved institutions seems to be based on respect.
The media have developed an important role in the Venezuelan political and social context, but they have lost a lot of credibility among people in recent years. Lessons from the radio experiment for other health programs, policies, and strategies, also for CD, are that the institutions need to be creative in looking for new ways to relate with communities and people, with respect for people’s own knowledge and their autonomy.

The burden on informal care-givers

With the increasing burden of CDs and the present (inappropriate) organisation of many HS, community involvement and particularly family caregivers are the primary source of especially chronic (long-term) care and, in some settings, have even been seen as a solution for the shortages of resources in the HS. However, the increasing burden of CDs and societal transitions such as the participation of women in labour out of home and urbanisation results in a change in balance between the caregivers and people needing care. As a consequence, the pressure on caregivers is increasing.
Informal caregivers are an important resource for the HS and we should be aware of the potential burden that is placed on them, physically, mentally, socially and financially. Caregivers are subjected to stress, less wellbeing and physical health, relationship and personal strain and depressive symptoms. They are sometimes called hidden patients, because they rarely seek professional help. Based on Yates (1999), Ribesse et al (article in progress) developed a framework for interventions both for CD patients and their informal caregivers at macro-level (raise awareness, advice regarding existing government schemes and epidemiological research), meso-level (training, networks of families for mutual support, respite care) and micro-level (support, education and advice). Despite this, there are probably limits to what we can ask from informal carers and we should be careful not to overburden them. This is probably not a luxury limited to HIC, but may be needed in many contexts in LMIC as well.

Contributions by Jean Macq, Maurits van Pelt, Pedro Villasana, An Piessens, Adolfo Alvarez Pérez, Everd Maniple, Josefien van Olmen, Bart Criel, Guy Kegels