Intervention Name

Strategies or Activities

Setting

Target Population

Effectiveness

Program Status

1. Factors that influence parents’ experiences with results disclosure after newborn screening identifies genetic carrier status for cystic fibrosis or sickle cell hemoglobinopathy [41]

(2013)

· Parents were given their newborn’s sickle cell trait screening results by their infant’s PCP in various settings.

· This study aimed to identify factors during initial newborn screening carrier results disclosure by primary care providers (PCPs) that influenced parents’ experiences and reactions.

· Open-ended responses from telephone interviews with 270 parents of carriers were analyzed using mixed-methods.

Wisconsin, between March 2008 and August 2010.

270 parents of children with a sickle cell trait.

· Parents identified aspects of PCP communication which influenced their reactions and results disclosure experiences.

· Parents reported positive (35%) or negative (31%) reactions to results disclosure.

· Parents’ experiences were influenced by specific factors: content messages (72%), PCP traits (47%), and aspects of the setting (30%). Including at least one of five specific content messages was associated (p < 0.05) with positive parental reactions; omitting at least one of four specific content messages was associated (p < 0.05) with negative parental reactions.

· Parents reported positive reactions when PCPs avoided jargon or were perceived as calm. Parents reported negative reactions to jargon usage and results disclosure by voicemail.

· Findings suggest ways PCPs may improve communication of carrier results. PCPs should provide specific content messages and consider how their actions, characteristics, and setting can influence parental reactions.

This intervention is active.

2. Prenatal sickle cell screening education effect on the follow-up rates of infants with sickle cell trait (2000). [42]

· Mothers of infants with sickle cell trait were shown a 10-minute education videotape specifically produced for this target population during pregnancy and were given the opportunity for in-person notification of screening results and follow-up counseling/education.

· This study assessed the effect of prenatal education about newborn sickle cell screening on parents’ compliance with the follow-up for infants with sickle cell trait.

· Follow-up rates, anxiety and retention of information were assessed for the case-control study.

Alabama, from May 1993 through October 1995.

Mothers in prenatal clinics.

· There were a total of 15,670 infants born in the region, and 647 infants were identified with sickle cell trait. The follow-up rate for parents of infants with sickle cell trait was significantly higher (76%) for study group than the control group (49%) (p = 0.0006).

· Parents whose prenatal education included sickle cell hemoglobinopathy information retained significantly more of the information given during the post-natal education than did controls.

· Data suggests that prenatal education for expectant mothers which includes information about newborn sickle cell screening significantly increases the follow-up rate for infants with sickle cell trait and contributes to a greater retention of information.

This intervention ended in 1995 and is no longer active.

3. Feasibility of a Community-Based Sickle Cell Trait Testing and Counseling Program. [43]

(2016)

· Community intervention tested in eight community sites in which participants were invited to complete a community-based educational program and hemoglobin analysis. The analysis was followed by individual meetings with a genetic counselor to discuss test results and receive further information about their diagnosis, as well as resources for care and support moving forward.

· As part of the formative work for this study, a multidisciplinary team developed educational materials to promote sickle cell trait testing among African American families. Using the recommended program development stages of formative research, message development, pretesting and message refinement, the multidisciplinary team created their messaging strategy.

· This 15-minute educational program explained traits, genetic inheritance, and general information about sickle cell trait and SCD.

St. Louis, Missouri, between July 14, 2010 and May 31, 2012.

Participants were recruited from various branches of the St. Louis Federally Qualified Health Centers. 637 people completed the educational program.

· The study found that the program would likely be feasible in many communities, due to its success in the experimental eight communities.

· The program also increased the number of individuals who know their sickle cell trait status.

· Between July 14, 2010, and May 31, 2012, of the 637 participant who completed the educational program, five hundred seventy (89.5%) provided a blood sample, and 61 (10.9%) had a sickle cell trait or other hemoglobinopathies. The genetic counselor met with 321 (56.3%) participants.

This intervention ended in 2012 and is no longer active.