Using formative research to develop a counselor training program for newborn screening in Ghana.

Area of Science:

• Genetics and Public Health
• Community Health Education
• Genetic Counseling

Background:

• Sickle cell disease (SCD) and sickle cell trait (SCT) are prevalent in sub-Saharan Africa, necessitating robust screening and counseling strategies.
• Limited understanding exists regarding community attitudes and specific needs for implementing newborn screening and family support for SCD/SCT.
• Ghana faces significant public health challenges due to the high prevalence of SCD and SCT.

Purpose of the Study:

• To explore community attitudes and beliefs about SCD/SCT among counselors and potential counselors in Ghana.
• To gather input on essential goals for family counseling following newborn screening for SCD/SCT.
• To obtain guidance for developing effective counselor education programs tailored to the Ghanaian context.

Main Methods:

• Qualitative study employing five focus groups with 32 healthcare providers and health educators across 9 regions of Ghana.
• Facilitators used a structured protocol to guide discussions.
• Data were coded and analyzed thematically to identify common perceptions and beliefs.

Main Results:

• Key themes included genetics, inheritance, SCD complications, stigmatization, marital strain, and emotional stress.
• Prevalent misconceptions identified SCT as a form of SCD.
• Cultural and spiritual beliefs about the causes of SCD/SCT were common, alongside positive perceptions like academic achievement and family cohesion.

Conclusions:

• Findings highlight the need to address misconceptions and cultural beliefs in SCD/SCT counseling and education in Ghana.
• Recommendations were formulated for a counselor training program, submitted to Ghana's Ministry of Health.
• Effective counselor training is essential for improving newborn screening and family support for SCD/SCT.