Facilitators and barriers to newborn screening and enrollment into care
| Facilitators . | Barriers . |
|---|---|
| Newborn screening | |
| ○ Government ownership and support in the form of policy formulation, funding, and import waivers ○ Involvement of the health care stakeholders in planning and workflow design30,32 ○ Acceptability of NBS among stakeholders ○ Integration of NBS for SCD into existing services and programmes31,33 | ○ Lack of government support and political will to implement existing policies on NBS ○ Lack of public awareness and low level of education among mothers30,31 ○ Low accessibility to screening facilities31 ○ Limited diagnostic laboratory materials supply and stock-outs31,32 |
| Enrollment and follow-up | |
| ○ Existing well-resourced SCD clinics. Education of families using standardized text on the importance of follow-up30,31 ○ Government ownership ○ Funding from industry partnerships and technical support ○ Collection of proper and adequate contact information for use in tracing patients should they not return to health facility35,37 ○ Integration of NBS into maternal and child health programs in primary health care due to the cost of transport. Follow-up care should be designed for well babies instead of taking them into very busy pediatric clinics in tertiary health care centers. | ○ Denial of positive test results by parents because of apparently healthy babies within the first 6 months and stigma30,34 ○ Low availability of, accessibility to, and affordability of comprehensive care services31 ○ Unsuccessful tracking due to dynamics of mobile phone numbers (wrong or disconnected numbers)35 ○ Delay in communicating test result and relocation of family after36 |
| Facilitators . | Barriers . |
|---|---|
| Newborn screening | |
| ○ Government ownership and support in the form of policy formulation, funding, and import waivers ○ Involvement of the health care stakeholders in planning and workflow design30,32 ○ Acceptability of NBS among stakeholders ○ Integration of NBS for SCD into existing services and programmes31,33 | ○ Lack of government support and political will to implement existing policies on NBS ○ Lack of public awareness and low level of education among mothers30,31 ○ Low accessibility to screening facilities31 ○ Limited diagnostic laboratory materials supply and stock-outs31,32 |
| Enrollment and follow-up | |
| ○ Existing well-resourced SCD clinics. Education of families using standardized text on the importance of follow-up30,31 ○ Government ownership ○ Funding from industry partnerships and technical support ○ Collection of proper and adequate contact information for use in tracing patients should they not return to health facility35,37 ○ Integration of NBS into maternal and child health programs in primary health care due to the cost of transport. Follow-up care should be designed for well babies instead of taking them into very busy pediatric clinics in tertiary health care centers. | ○ Denial of positive test results by parents because of apparently healthy babies within the first 6 months and stigma30,34 ○ Low availability of, accessibility to, and affordability of comprehensive care services31 ○ Unsuccessful tracking due to dynamics of mobile phone numbers (wrong or disconnected numbers)35 ○ Delay in communicating test result and relocation of family after36 |