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

Abstract

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.

Factors associated with utilization of preconception Sickle cell screening among women receiving antenatal care at Hoima regional referral hospital, Uganda

“…This support can even be monetary to aid in paying for the test or even transport to reach the screening sites. The findings were to a study done in Tanzania, where there was a positive support of parents towards preconception sickle cell screening, thus providing support to ensure screening is done thus preventing seeing their children suffer with the burden related to sickle cell (Kisanga et al, 2021).…”

“…In East Africa, many of the parents of children with sickle cell get to know their statuses after diagnosis of SCD among their children. There was an expression of participants to make preconception screening obligatory (10).…”

Sickle Cell Disease Awareness and Perception Among Christian Religious Leaders in Accra Metropolis: A Qualitative Study

“…They recommend intense public education, genetic counseling, and screening for carriers and PND as primary preventive measures. Many affected countries, including Ghana, have introduced premarital counseling and screening programs (Dennis-Antwi et al, 2018; Kisanga et al, 2021;Osei-Tutu et al, 2020). Scholars have also highlighted the role of individual and community awareness and collaborative partnerships in strengthening primary prevention prenatal screening to reduce disease incidence, morbidity, and mortality and improve quality of life (Ampomah et al, 2022;Dennis-Antwi et al, 2018;WHO, 2010).…”

Winning the fight against sickle cell disease in Africa: The need to redefine premarital sickle cell trait screening to promote awareness

“…One renowned and cost-effective preventive measure is premarital genotype screening. [ 3 4 ] Premarital genotype screening is a medical test for couples wanting to marry to determine their hemoglobin phenotype and compatibility; this allows them to make informed decisions to prevent sickle cell diseases in the offspring.…”