A story from Malawi: Going the extra mile for the Global Burn Injury PSP

This is Yotamu Gondwe’s story. He is a research assistant from Malawi with a keen interest in burn injury. The story is about how he heard of the Global Burn Injury PSP, how he completed the survey, but also thought how important it was for others to have the opportunity to have their voices heard. So, he borrowed a car, travelled to 8 districts and collected survey data from 24 people. This is an inspiring story of reaching out into the most rural areas and engaging with local communities to improve the reach and diversity of JLA survey responses.

"We are so glad that Yotamu reached out to us and went above and beyond to get responses to our survey from patients and survivors who otherwise would not have been able to access it. He has made sure that their voices are heard in the Priorities in Global Burns Research PSP."

Prof Jane Blazeby, PSP Lead, on behalf of the late Prof Amber Young.

 

Tell us a little about yourself and how you came to be helping with the Global Burn Injury PSP?

My Name is Yotamu (Jotham) Gondwe, a 38-year-old man from Lilongwe, the capital of Malawi.

I have been working as a data assistant /research assistant for almost 13 years in various research including trauma registry, burns research, acute general surgery research and nutrition burns research.

But in all of this research I have been very interested in burns patients’ improvement after seeing the way burns people suffer in developing countries. There is a real need to improve burns patient care.

So I don’t even get tired to think of the way we can improve it, starting from grass roots level.

Through reading various information about burns care in past years I was connected to two burns survivors. Charlene Pell assisted me with various books to read about burns care. Diana Tenney from BSONE Support Group helped me to do the clinical research and data management Diploma online study at James Lind Institute* and she has been also connecting me in various zoom meetings for burns cares information.

I am dedicating my life to see the improvement of burns patients care and also to improve the quality of life of burns survivor. I would love to become a plastic surgeon in my country if the opportunity arises.

One day I got an email from Charlene Pell about a survey for the JLA Global Burn Injury priority setting partnership. She asked me to take part so I said yes - that is all I love! I got the link and that is when I connected with Amber Young, may her soul rest in peace.

Together with her colleague Hollie Richards we started communicating through email and WhatsApp.

After looking at the survey I came up with the idea to interview those burns patient in the ward/admitted in the hospital at the particular time, clinicians, nurses, then those survivor in various areas around the catchment area of the town.

There was a challenge to reach some rural areas but a friend provided a car that we could fuel and do interviews with those survivors. All the funds paid for fuel and some gifts for some burns survivors. Some can’t even cultivate as all their hands have burns, some lost their marriages after burns and so all this makes life very difficult.

What was the most memorable moment from your work with the PSP?

The most memorable time was the time I went to do survey in the rural areas. Most burn survivors were so open to the survey and they talked a lot about their lives: the way they live day by day after burns trauma and what they go through in day to day life which made me think there is so much more that should be done for these survivors. 

What were people's responses to being asked for questions about burn injury?

The response was so good and all participants were filled with joy that their voice can be heard through taking part in the survey.

It was so good to work with the PSP and it is my wish if we can make more surveys that we can help burns survivor in other areas also.

I would like to introduce a place where these burns survivor can meet together to learn more about how they can face forward with their life. In the whole country we don’t have such places. I have been thinking a lot and dreaming to have a facility where we can be assisting trauma burns survivors with education and skills, guiding them on what they should be focusing on to have a good life as a human being. Working with this PSP has made me learn more from burns patients and about burns survivors’ views.

 

*The James Lind Institute and the James Lind Alliance are separate organisations.