Premarital genetic screening and care of Tanzanian children with sickle cell disease: a qualitative study on parents’ views and experiences

Genetic testing and counselling is one of the approaches to reduce the high birth rate of individuals with sickle cell disease (SCD). A descriptive phenomenological approach was used to explore parents’ views on premarital genetic screening for sickle cell trait and their experiences in the care of Tanzanian children with SCD using a face-to-face in-depth interview. The study was conducted at sickle cell clinic at tertiary hospital in Dar es Salaam region between June and August 2020. The study found that most of the parents with SCD children knew about genetic testing and counselling after the diagnosis of their children’s SCD status. Major approaches employed in managing SCD crises were supportive, preventive, and symptomatic. Parents expressed a heavy burden related to caretaking due to the lack of financial support and stigmatization. These affected their children’s quality of care and management. In conclusion, participants expressed a preference for premarital genetic testing, where others insisted it becomes compulsory. In addition, there should be an adequate clinic for early screening, accessible therapeutic support and long-term follow up for children with SCD. Support to poor families with individual with SCD through national health assurance scheme and free provision of preventive medications such as hydroxyurea, is recommended.