Effectiveness of family-based approach aimed at prevention and sustainable self-management of disabilities due to leprosy, podoconiosis and lymphatic filariasis

People with leprosy, lymphatic filariasis (LF) and podoconiosis often experience restrictions in their daily lives, due to their impairments. Most impairments can be prevented when self-management is practised. There have been efforts to formulate self-care groups, in which people meet and support each other on a regular basis. However, the involvement of families in preventing disabilities has received little attention, while this is a much more practical and sustainable approach. In another LRI-funded project, a family-based approach has successfully been piloted among persons affected by leprosy, LF and podoconiosis and their family members in the Awi zone, Ethiopia. This family-based approach consists of awareness raising, disability management and socio-economic empowerment.

In the previous project only the short term outputs and impact of the approaches will be studies in a small sample. Effectiveness of the family-based approach cannot be studied in such a small sample and with a relatively short follow-up time. To date most prevention of disability effectiveness studies have been flawed by failing to use a randomised controlled design. This has resulted in a lack of evidence about the effectiveness of these interventions. To collect credible evidence for this new, previously piloted family-based approach, the current study will use a randomised controlled design. A randomised controlled design is the most rigorous way of determining whether a cause-effect relation exists between intervention and outcomes.

The research question of this project is:

How effective is the family-based approach aimed at prevention and sustainable self-management of disabilities due to leprosy, podoconiosis and lymphatic filariasis compared to usual practice and care?

The project consists of three main phases:

1) Preparatory phase.

In this phase, a literature review will be conducted to guide the development of the psychosocial support component that will be added to the family-based approach. In addition, some of the questionnaires used will be validated by students. A training workshop will be organized to train the team and participants will be recruited. Baseline data will be collected and analyzed. The study areas will be randomized.

2) Implementation of the family-based approach.

In this phase, the family-based approach will be implemented. This includes basic training (meetings) for persons affected and family members in, among other things, disability management and using and giving social support. During the meetings, physical impairment outcomes will be collected. Participants in the control areas that receive ‘usual practice and care’ will be visited at the same time as the meetings are being held, to collect the same data as is being collected in the intervention area.

3) Follow-up and evaluation.

In this phase, the effectiveness, feasibility and acceptability of the approaches will be evaluated. This will be done by collecting follow-up information using the same questionnaires that were used as baseline measurement and additional in-depth interviews to collect most significant change stories and to assess the impact qualitatively. The follow-up will be done two months and one year after implementation of the approach. In this period, the PhD student will also finalize and submit his thesis.