Preprint / Version 1

Sickle cell disease-related knowledge and perceptions of traditional healers in tribal communities in India: implications on sickle cell disease programme

Authors

  • Bontha Babu Division of Socio-Behavioural & Health Systems Research, Indian Council of Medical Research, New Delhi, 110 029 India
  • Parikipandla Sridevi Department of Biotechnology, Indira Gandhi National Tribal University, Amarkantak, India
  • Shaily Surti Department of Community Medicine, Parul Institute of Medical Sciences and Research, Parul University, Vadodara, India
  • Deepa Bhat Department of Anatomy, JSS Medical College, JSS Academy of Higher Education and Research, Mysuru, India
  • Jatin Sarmah Department of Biotechnology, Bodoland University, Kokrajhar, India
  • Godi Sudhakar Department of Human Genetics, Andhra University, Visakhapatnam, India
  • Yogita Sharma Division of Socio-Behavioural & Health Systems Research, Indian Council of Medical Research, New Delhi, 110 029 India

Keywords:

Sickle cell disease, Knowledge, Perceptions, Traditional healers, Indigenous people

Abstract

Sickle cell disease (SCD) is a progressively debilitating genetic disease, and India is the second most affected nation in the prevalence of births with SCD. This SCD prevalence is high among Indian indigenous tribal communities, whose healthcare is pluralistic. Traditional healers are an essential part of tribal pluralistic care. This study aimed to understand the extent of SCD-related knowledge and practices of traditional healers and their willingness to participate in the SCD programme, which is primarily meant to screen and treat SCD. Following the grounded theory approach, data were collected by in-depth interviews with 40 traditional healers selected from five SCD endemic districts. Text data were coded through a deductive approach, and thematic content analysis was carried out. A few healers knew about SCD. However, almost all are aware of anaemia and its symptoms. Most healers were unaware of the cause of SCD and mentioned that malnutrition and anaemia are reasons for the recurrence of SCD-related symptoms. Most of the traditional healers did not give any treatment. Some gave symptomatic treatment and provided herbal medicines along with some rituals. Though some healers treated some of the typical symptoms of SCD like spleen enlargement, jaundice, swelling and pains in joints, they did not link them with SCD. All traditional healers expressed concern and said they support the government-run SCD programme. The programme should recognise the role and importance of traditional healers. Necessary education on SCD may be given to the healers. Such involvement and education empower the healers in appropriately guiding the people concerning SCD care. Supplementary Information The online version contains supplementary material available at 10.1007/s12687-022-00614-y. Keywords: Sickle cell disease, Knowledge, Perceptions, Traditional healers, Indigenous people

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