Status: In progress
To establish a community-based support system to improve the health and wellbeing of people affected by stigmatising skin diseases and their caregivers in Kaduna and Kwara State, Nigeria.
Neglected Tropical Diseases (NTDs) affect around one billion people, mainly those living in the poorest parts of the world and many more still remain at risk of infection. Many NTDs lead to serious long-term physical impairments which affect people’s health and wellbeing. Restrictions to livelihood activities, social, family and community interactions resultant from associated stigma and reduction in participation often lead to a disabling impact of NTDs. Over the last few years, impacts of chronic impairment and potential disability as a result of NTDs, and their associated negative implications on mental health, has gained increasing recognition in NTD research. However, there is still a significant lack of research that focuses on the holistic health and wellbeing of persons affected by NTDs.
Since the disabling impact of NTDs and the linked neglect and isolation is inherently social, the design, implementation and evaluation of control and treatment programmes must consider social priorities, relations and behaviours as well as the provision of medicalised management of disease conditions in isolation. Within this study, we therefore seek to use community based participatory research to initially explore understandings of holistic health and wellbeing from the perspectives of persons affected by NTDs and their families. These understandings will then be used to support affected persons to collaborate amongst themselves and with lower levels of the health system to design and implement integrated support interventions that focus on facilitating improvements to both physical and psycho-social health and wellbeing.
Kaduna and Kwara States Have both been chosen because they are in the early stages of the delivery of health services interventions that provide some support and management to persons affected by NTDs. In addition, partners currently supporting NTD programme delivery in these states have acknowledged that the provision of holistic life-long support and management for affected persons (following the completion of short-term medical treatments) is a critical gap in current service delivery. This study seeks to work with programme implementers including community-based groups (where they exist) to support them to address this gap in service delivery in a way that is both acceptable and accessible to affected persons and their families.
The study will take place in four phases:
Phase One – Reflection: This step will involve the engagement of people affected by stigmatising skin diseases and community health volunteers through the use of photovoice methods to understand their current reality in
relation to health and wellbeing issues and to support the identification of actions for change.
Phase Two – Plan: This activity will bring together people affected by stigmatising skin diseases and community health workers to facilitate participatory dissemination processes that enable, and support community led intervention planning.
Phase Three – Act: This phase will involve supporting people affected by stigmatising skin diseases and to implement the designed intervention activities with mentorship and support from community health volunteers.
Phase Four – Observe/Reflection: This will involve observation and reflection of the intervention which will be led by community members as well as independent evaluation activities.
October 2019 – August 2021