Launch of a toolkit for improving outcomes in sickle cell disease
IGDC member Sangeeta Chattoo from Sociology and Karl Atkin also from the Sociology Department at the University of York, in collaboration with ASHWINI, Gudalur Adivasi Hospital, (Tamil Nadu) in India, have been involved in an exciting project, developing a ‘minimally safe practice toolkit’ for improving outcomes in sickle cell disease.
Key findings from an ESRC grant (ES 15665/1) highlighted that protocols embedded in government policy guidelines had little influence on the practice of clinicians at a local level. Different hospitals and different clinicians within the same area might follow different treatment protocols that can be potentially harmful for patients in the long-term.
The ESRC/ IAA award responded to this finding, taking the cue from a colloquial Hindi term, Juggad, (improvising with little at hand). The researchers worked closely with leading clinicians, Professor Dipty Jain and Dr Nandakumar Menon, parents and patients and local research partners, to find practical solutions to improving knowledge and every-day practices of care, known to improve outcomes. As Atkin explains: “This is a fantastic team effort, involving clinicians, community organisations and academics.”
Following two consultative workshops (November 2019, April 2022), the collaborative team has launched two toolkits, translated into 8 regional languages and accessible formats for parents/ carers and adult patients. “The toolkit, by highlighting best available evidence, adapted to local circumstances, will help improve long term care for those with sickle cell disorders and their families in India” adds Atkin.
Team photograph from the consultative workshop, 2022
At the toolkit launch on 3 July, Chattoo said, “As an academic, it is not often that one can see the potential positive impact of research. It has been a great team to work with and worth every bit of angst and all the hard work that has gone into it over the years”.
Each translated version will be accompanied by an audio recording for family carers and brief videos highlighting important information or skills. For instance, one of these teaches parents to palpate the spleen of a child so that they can mark a growth that is abnormal and seek immediate help before it turns sinister. An online version of both the toolkits with links to extra resources will be available online, and accessible free of charge to anyone in the world via the ASHWINI website.
Gautam Dongre, a parent of two children with sickle cell and the Secretary of National Alliance for Sickle Cell Organisations (NASCO), said, “As a parent of two children with sickle cell, the toolkit will totally change the lives of families who struggle due to lack of information, myths about medications and negative attitudes of professionals and society”.