Groundbreaking Action-Research Project

Groundbreaking Action-Research Project

In February 2011 Project Harar began a ground-breaking piece of research, evaluating our previous treatment and assessing how we can best help future cleft patients living in the poorest, rural areas.

In contrast with the multiple surgical operations that most Western patients with cleft lip and palate receive, the general practice in Ethiopia has been to carry out a single operation, with little follow-up care. Exciting advances in Addis Ababa, the Ethiopian capital, now allow us to offer services such as palate surgery, speech therapy and orthodontic care, going beyond the ‘single operation’ technique.

Researcher Dr Matt Fell met with 400 previous patients to assess the impact of the treatment and and find out what, if any, further care is necessary. Alongside our local partners, we are organisingaccess to treatment for all patients who require further treatment. Our close links to our patients, their families and community health workers put us in a unique position to ask what matters most to them. Do our past patients feel good? Look good? Share family meals? Did they get a chance to go to school? Plan to have a family one day? Get treated fairly? Speak clearly?

The field research phase has concluded, and we are busy analysing and writing up the findings. A full report will be released in due course. The provisional findings are extremely positive. They show:

Cleft lips are a huge issue for our patients pre-treatment. Participants reported problems ranging from insults (almost half said this was the biggest problem), eating and speaking, difficulty helping at home eg, making and maintaining a fire,  and, overall, diminished hopes for the future.

Treatment is very low-risk and has a transformational effect. Friya, for example, only began eating with her family after treatment, as her cleft lip made it very difficult to eat. Isa, an older patient, discovered his fantastic singing voice once his cleft was fixed. Fewer than 2% of patients reported no positive change after treatment.

Cleft lip and palate treatment is vitally important for education. Only half of children with a cleft lip go to school before treatment. Afterwards, this rises to 85%. We spoke to several children who dropped out of school due to discrimination, and only returned following the lip repair.

However, we learned that cleft lip treatment isn't enough for all children with cleft conditions. Cleft palates cause ongoing difficulties, and we have made many subsequent referrals for participants to take advantage of the new cleft palate care now available in Addis Ababa. There is also a need for further care such as speech therapy and dental treatment.

With the research to guide us, we will ensure that all our patients have access to professional treatment enabling them to eat, speak and smile.

In July 2011, Dr Matt Fell and Project Harar's Executive Director Tom Hoyle were invited to present the initial findings of the rural follow-up project to the Paaclip Congress (Pan-African Association of Cleft Lip and Palate) held in Kumasi, Ghana. We are grateful to Professor Peter Donkor and Transforming Faces Worldwide for the opportunity, and to our Ethiopian colleagues, Smile Train and many others for their contribution to the discussion. The presentation slides are available to download here (.ppt). If you have any queries about this action-research or the findings, please contact us.

We are grateful to the surgeons and speech therapists in Addis Ababa, the Isle of Man Overseas Aid Committee and Transforming Faces Worldwide for supporting this project.

In July 2011, Dr Matt Fell and Project Harar's Executive Director Tom Hoyle were invited to present the initial findings of the rural follow-up project to the Paaclip Congress (Pan-African Association of Cleft Lip and Palate) held in Kumasi, Ghana. We are grateful to Professor Peter Donkor and Transforming Faces Worldwide for the opportunity, and to our Ethiopian colleagues, Smile Train and many others for their contribution to the discussion. The presentation slides are available to download here (.ppt). If you have any queries about this action-research or the findings, please contact us.

We are grateful to the surgeons and speech therapists in Addis Ababa, the Isle of Man Overseas Aid Committee and Transforming Faces Worldwide for supporting this project.

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