Improving the mental health and wellbeing of people affected by leprosy or Buruli ulcer in Nigeria

Plain English summary of protocol

Background and study aims
Leprosy and Buruli ulcer (BU) are infectious diseases that co-exist in many states across Nigeria. Both are diseases of public health importance and are often associated with high levels of stigma and discrimination owing to their tendency to cause visible deformities.
Mental health services in Nigeria suffer from multiple gaps. It is estimated that there is only one mental health expert for hundreds of thousands of inhabitants. In view of the dearth of mental health professionals coupled with a skewed distribution of professionals in favour of the cities as well as poor budgetary allocation by the government, there is a need to explore sustainable ways to make mental health services accessible to those in dire need, especially persons affected by leprosy and BU.
Some studies and projects have been undertaken to assess the burden of mental health problems especially depression among persons with various NTDs as well as appropriate ways to address them. Some of the findings are quite promising. They show that a community-oriented approach run by trained laypersons (without specialist mental health background) with appropriate supervision, can improve access to effective, acceptable and cost-effective mental health services. The study aims to determine the impact of a community-oriented, holistic approach on the mental health status (especially, depression and generalized anxiety disorder) and the quality of life among persons affected by leprosy or Buruli ulcer in Southern Nigeria.

Who can participate?
People affected by leprosy or BU in southern Nigeria, especially those registered for treatment from 2014 up to 1 year before the end of the intervention. It essentially includes those aged between 15 to 65 years who agree to participate. Moreover, participants will be selected from the 10 LGAs with the highest number of leprosy/BU patients in southern Nigeria. The states and local government areas (LGAs) are Anambra State (Anambra East and Ogbaru LGAs), Akwa Ibom State (Etinan LGA), Bayelsa State (Ogbia LGA), Cross River State (Ogoja, Obubra and Calabar South LGAs), Delta State (Ethiope East and Isoko South LGAs) and Ebonyi State (Ebonyi LGA).

What does the study involve?
This study has a dual objective: to determine the burden/extent of mental illness (especially depression) among persons affected by leprosy or BU and ascertain whether a holistic (multi-layered) community-oriented approach involving patient self-help groups, lay community counsellors and non-specialist health workers improves the mental health and well-being of leprosy/BU patients in southern Nigeria. It is believed that the use of self-help groups (SHG), lay community counsellors and trained health workers will reinforce and complement each other in a synergistic manner, resulting in better outcomes to approaches based on health workers alone.
Advocacy visits to relevant groups will follow the ethical approval of the project from appropriate authorities. A baseline survey will be conducted to ascertain the burden of mental health problems among leprosy or Buruli ulcer patients using appropriate research tools. Social discrimination against persons affected by leprosy or Buruli ulcer by community members will also be measured at the preliminary stage of the project. Self-help groups will be established to provide an enabling platform for peer-support through regular interactions/meetings, reduce self-stigma and promote self-esteem among patients. Selected community opinion leaders will be trained as lay-counsellors to provide counselling for patients identified to have depression or anxiety and promote social participation. Trained health workers will ensure effective treatment and/or adequate referral services for patients. At the end of the project, patients will be re-assessed to determine any difference in their mental health status and quality of life.

What are the possible benefits and risks of participating?
Participants will be actively involved in self-help groups with others who may have suffered similar psychological and emotional trauma due to stigma and social discrimination. Peer-interaction and experience sharing by other patients might remarkably give hope to people who are depressed and restore self-esteem and mental well-being. Community leaders who serve as counsellors might go further to defend the human rights of persons affected by leprosy and BU through the platform of self-help groups. Similarly, healthcare workers involved alongside community leaders in some of the self-help group meetings will provide mental health services where necessary to participants. However, participants may suffer the risk of having their disease status disclosed to other participants and facilitators in order to receive the necessary help.

Where is the study run from?
German Leprosy and TB Relief Association (Nigeria)

When is the study starting and how long is it expected to run for?
July 2020 to December 2023

Who is funding the study?
Leprosy Research Initiative (LRI)

Who is the main contact?
Ngozi Ekeke
ekekengozi@gmail.com, ngozi.ekeke@dahw.org

Contact information

Study information

Eligibility

Locations

Countries of recruitment

• Nigeria

Study participating centre

Results and Publications

Study outputs

Additional files

ISRCTN83649248_PROTOCOL.pdf

Uploaded 18/03/2021

ISRCTN83649248_PIS.pdf

Uploaded 18/03/2021

Editorial Notes

31/10/2025: Publication reference added.
04/07/2022: Publication reference added.
08/06/2022: The total final enrolment was added.
18/03/2021: Uploaded protocol (not peer reviewed). The participant information sheet has been uploaded.
04/03/2021: Trial's existence confirmed by the Health Research and Ethics Committee, University of Nigeria Teaching Hospital.