Leprosy Affected Persons in Nampula Province

 

The Associazione Italiana Amici di Raoul Follereau (AIFO) has been working with the National Leprosy Programme in Mozambique since 1979. At present our work focuses on two provinces – Nampula and Manica. Nampula is known as one of the provinces with the largest number of new cases of leprosy in Mozambique.

 

At the same time, the number of persons with disabilities due to leprosy is quite high, though data about the total number of persons needing rehabilitation services is difficult to collect. According to national data, between 2001 and 2009, about 17,000 new cases of leprosy were diagnosed in Nampula province. Even if we were to consider that 20% of them may require rehabilitation services, it would mean that we have 3,400 persons with leprosy related disabilities.

 

An analysis of the data related to persons with leprosy who have grade two disabilities at the time of diagnosis, shows that a significant percentage of them are elderly persons from rural areas, where social stigma and socio-economic exclusion are more serious issues. These create additional challenges for coping with poverty and disability and performing routine daily activities.

 

Stigma and Discrimination Associated with Leprosy in Nampula

 

Stigma is still high in rural communities where a large number of people believe that leprosy is linked to spiritual or social factors. The direct consequence of stigma is discrimination. Discrimination results in being excluded from job opportunities in both the private and public sectors. It also means being excluded from the education system. The Mozambican Ministry of Social Welfare has not yet ratified the United Nations (UN) Convention on Rights of Persons with Disabilities so this also means that an effective national policy on disability can not yet be put into place.

 

In rural areas, land is usually given to the “healthier” members of the family. In cases where the persons affected by leprosy have land, their land often lies abandoned as the family and the community may refuse to work together because they fear they will be stigmatised if they work alongside persons affected by leprosy.

 

Even among health personnel, stigmatising behaviour towards persons affected by leprosy has been reported. Thus persons affected by leprosy may face difficulties, even, in accessing public health services.

 

Low self-esteem and lack of self-confidence among leprosy affected persons further complicates this difficult situation. They tend to consider themselves useless and feel ashamed about their condition, so their participation in community events or in business opportunities at community level may be affected. These lead to self-exclusion and loss of capabilities and opportunities.

 

AIFO’s Strategies against Stigma and Discrimination

 

AIFO has been working with a community-based approach, in which, persons affected by leprosy occupy a key and central role in their interventions. These focus on empowering persons affected by leprosy and improving their quality of life through reducing stigma.

 

Under the community-based strategies, persons affected by leprosy are encouraged and supported to establish self-care groups and peer groups, whose aim is to rehabilitate their members socially and physically. Such groups also create spaces for understanding human rights issues, so that individuals can self-advocate for their rights and fight against socio-economic exclusion within their communities.

 

For this purpose, AIFO projects help these self-care groups to create synergies between three kinds of stakeholders:

 

1. Community-Based Stakeholders: including traditional leaders; natural and traditional medicine; local health clinics (where leprosy services are integrated); community health volunteers;
2. People Involved in Prevention of Disability Activities: including provincial and district leprosy control programme supervisors; provincial hospital departments of physiotherapy, orthopaedic services and physical rehabilitation surgeries;
3. People Involved in Socio-economic Rehabilitation Activities: including relevant faith- based organisations; the Mozambican Association of Disabled People (ADEMO); District Social Affairs Office; microfinance community-based organisations; vocational-training and agricultural development NGOs; law schools.

 

AIFO strives to improve the co-ordination of activities of self-care groups with these different stakeholders. Regular meetings are promoted with community leaders and volunteers, local clinic personnel, social welfare personnel and group leaders, so people affected by leprosy can report on their health status and progress with their socio-economic group activities.

 

Self-care groups undertaking effective preventive self-care activities on a daily basis can use this opportunity to also identify priority actions for their members or for the whole group. They can work with community volunteers and link to different service providers to mobilise resources for the things they need.

 

Thus, leprosy affected persons themselves have been asking the provincial leprosy supervisor to visit them or asking district health personnel for access to services. They have also been asking to meet social welfare personnel and volunteer law students, who may be willing to assist in tackling discrimination they are facing.

 

In addition, AIFO supports provision of training by local non-governmental organisations to self-care groups, which aims to improve the skills and capacities of persons affected by leprosy.

 

Some of the better organised self-care groups are also involved in income generation activities such as agriculture production of marketable crops, buying/selling of goods, and micro-finance services for individual enterprises. Members of the groups can define the type of contribution they can make to group income generation activities, bearing in mind what is feasible for them to undertake given their physical disabilities.

 

Motivator demonstrating how someone with impairments to their hand can work the land

Photo © Gemma Salvetti

 

There are many examples of successful self-care group activities, such as the production of highly marketable crops which are sold to the private sector and local markets (soya beans, cashew nuts etc) and the local production of candles and soap which are cheaper and of better quality than others on the market.

 

Improved hygiene and physical rehabilitation resulting from self-care has also contributed to the restoration of dignity and self-confidence among persons affected by leprosy. Furthermore, their own self-image has changed from considering themselves doentes (sick people) to “members or business people”, who can help fight both stigma and “self-stigma”.

 

Community advocacy and sensitisation work have also contributed towards the removal of stigma barriers perceived by health and social welfare personnel, who have been visiting people affected by leprosy more frequently and have been providing better services.

 

Conclusions

 

Nampula has large numbers of persons with disabilities due to leprosy. Social stigma and discrimination, including self-stigma are serious problems. Community-based approaches through self-care groups have been successful in fighting some of these problems. As individuals have benefited from physical and socio-economic rehabilitation, these individuals have regained their dignity to the extent that they have been prepared to face up to and challenge stigmatising attitudes and behaviour within their communities. The main success factors, which have contributed towards this, are the following:

 

1)      Continuous and properly planned facilitation and support to self-care groups by community volunteers, AIFO field staff, with involvement of local authorities and persons working with leprosy control programme at district and province levels.

2)      Functioning and effective self-care groups, which go beyond service-provision and resource-mobilisation for the benefit of their own members, and help to spread these benefits amongst the communities

3)      Working with motivators of self-care groups, who are themselves persons affected with leprosy, who have experienced physical and socio-economic rehabilitation and whose dignity has been restored.

4)      The election of community volunteers by the members and their approval by the traditional village authority, proving the importance of trust among the members towards volunteers for establishing crucial networks within communities and outside.

5)      The involvement of health personnel in self-care groups activities and capacity building

6)      A clear definition of volunteering in communities. Building the capacity of volunteers to prevent disabilities and involving them in all phases of the strategy.

 

 

 

Gemma Salvetti, AIFO Mozambique

Contact: aifonampula@gmail.com

Categories: Members, Mozambique