Parents' Experiences and Needs Regarding Infant Sickle Cell Trait Results.

BACKGROUND AND OBJECTIVE: Sickle cell trait (SCT) has reproductive implications and can rarely cause health problems. SCT counseling improves parent knowledge but is infrequently received by children with SCT compared with children with cystic fibrosis carrier status. There are no national guidelines on SCT disclosure timing, frequency, or counseling content. Parents' experiences with SCT disclosure and counseling are poorly understood but could inform the development of guidelines. We explored parents' experiences with and desires for SCT disclosure and counseling for their infants with SCT identified via newborn screening. METHODS: Parents of infants 2 to 12 months old with SCT were recruited through a state newborn screening program for semistructured interviews to explore their experiences with and desires for SCT disclosure and counseling. Inductive thematic analysis was conducted. RESULTS: Sixteen interviews were completed from January to August 2020. Most parents reported that SCT disclosure occurred soon after birth, in person, and by the child's physician. Five themes were identified: parent knowledge before child's SCT disclosure, family planning, the dynamics of SCT disclosure and counseling, emotions and actions after SCT disclosure, and parent desires for the SCT disclosure and counseling process. Two primary parent desires were revealed. Parents want more information about SCT, particularly rare symptomatology, and they want SCT counseling repeated once the child approaches adolescence. CONCLUSION: Parents report receiving their child's SCT diagnosis in the early newborn period from their child's doctor but indicate they receive incomplete information. Opportunities exist in primary care pediatrics to better align SCT disclosure timing and counseling content with parent desires.

Pediatricians Contributing to Poverty Reduction Through Clinical-Community Partnership and Collective Action: A Narrative Review.

Poverty affects child health and well-being in short- and long-term ways, directly and indirectly influencing a range of health outcomes through linked social and environmental challenges. Given these links, pediatricians have long advocated for poverty reduction in both clinical settings and society. Pediatricians and others who work in pediatric settings are well-suited to address poverty given frequent touchpoints with children and families and the trust that develops over repeated encounters. Many pediatricians also recognize the need for cross-sector engagement, mobilization, and innovation in building larger collaborative efforts to combat the harmful effects of poverty. A range of methods, like co-design, community organizing, and community-engaged quality improvement, are necessary to achieve measurable progress. Moreover, advancing meaningful representation and inclusion of those from underrepresented racial and ethnic minority groups will augment efforts to address poverty within and equity across communities. Such methods promote and strengthen key clinical-community partnerships poised to address poverty's upstream root causes and its harmful consequences downstream. This article focuses on those clinical-community intersections and cross-sector, multi-disciplinary programs like Medical-Legal Partnerships, Medical-Financial Partnerships, clinic-based food pantries, and embedded behavioral health services. Such programs and partnerships increase access to services difficult for children living in poverty to obtain. Partnerships can also broaden to include community-wide learning networks and asset-building coalitions, poised to accelerate meaningful change. Pediatricians and allied professionals can play an active role; they can convene, catalyze, partner, and mobilize to create solutions designed to mitigate the harmful effects of poverty on child health.

Diagnosis patterns of sickle cell disease in Ghana: a secondary analysis.

BACKGROUND: Despite having the highest prevalence of sickle cell disease (SCD) in the world, no country in Sub-Saharan Africa has a universal screening program for the disease. We sought to capture the diagnosis patterns of SCD (age at SCD diagnosis, method of SCD diagnosis, and age of first pain crisis) in Accra, Ghana. METHODS: We administered an in-person, voluntary survey to parents of offspring with SCD between 2009 and 2013 in Accra as a part of a larger study and conducted a secondary data analysis to determine diagnosis patterns. This was conducted at a single site: a large academic medical center in the region. Univariate analyses were performed on diagnosis patterns; bivariate analyses were conducted to determine whether patterns differed by participant's age (children: those < 18 years old whose parents completed a survey about them, compared to adults: those > = 18 years old whose parents completed a survey about them), or their disease severity based on SCD genotype. Pearson's chi-squared were calculated. RESULTS: Data was collected on 354 unique participants from parents. Few were diagnosed via SCD testing in the newborn period. Only 44% were diagnosed with SCD by age four; 46% had experienced a pain crisis by the same age. Most (66%) were diagnosed during pain crisis, either in acute (49%) or primary care (17%) settings. Children were diagnosed with SCD at an earlier age (74% by four years old); among the adults, parents reflected that 30% were diagnosed by four years old (p < 0.001). Half with severe forms of SCD were diagnosed by age four, compared to 31% with mild forms of the disease (p = 0.009). CONCLUSIONS: The lack of a robust newborn screening program for SCD in Accra, Ghana, leaves children at risk for disease complications and death. People in our sample were diagnosed with SCD in the acute care setting, and in their toddler or school-age years or thereafter, meaning they are likely being excluded from important preventive care. Understanding current SCD diagnosis patterns in the region can inform efforts to improve the timeliness of SCD diagnosis, and improve the mortality and morbidity caused by the disease in this high prevalence population.

Vulnerable Child Syndrome and Newborn Screening Carrier Results for Cystic Fibrosis or Sickle Cell.

OBJECTIVES: To measure parental perceptions of child vulnerability, as a precursor to developing a population-scale mechanism to mitigate harm after newborn screening. STUDY DESIGN: Participants were parents of infants aged 2-5 months. Parental perceptions of child vulnerability were assessed with an adapted version of the Vulnerable Baby Scale. The scale was included in the script for a larger study of telephone follow-up for 2 newborn blood screening samples (carrier status for cystic fibrosis or sickle cell hemoglobinopathy). A comparison sample was added using a paper survey with well-baby visits to an urban/suburban clinic. RESULTS: Sample sizes consisted of 288 parents in the cystic fibrosis group, 426 in the sickle cell hemoglobinopathy group, and 79 in the clinic comparison group. Parental perceptions of child vulnerability were higher in the sickle cell group than cystic fibrosis group (P < .0001), and both were higher than the clinic comparison group (P < .0001). Parental perceptions of child vulnerability were inversely correlated with parental age (P < .002) and lower health literacy (P < .015, sickle cell hemoglobinopathy group only). CONCLUSIONS: Increased parental perceptions of child vulnerability seem to be a bona fide complication of incidental newborn blood screening findings, and healthcare professionals should be alert to the possibility. From a public health perspective, we recommend routine follow-up after incidental findings to mitigate psychosocial harm.

Surveying the knowledge, attitudes, and practices of District of Columbia ACOG members related to breastfeeding.

Although the American Academy of Pediatrics and the American Congress of Obstetricians and Gynecologists (ACOG) recommend exclusive breastfeeding for the first 6 months, only 14.6% of babies born in the District of Columbia (DC) reached this goal. Breastfeeding support from providers has been shown to increase exclusive breastfeeding. We aim (1) to describe breastfeeding knowledge and attitudes, (2) to determine the presence of breastfeeding in routine prenatal discussions, and (3) to determine the knowledge of facility adoption of the Perinatal Care (PC) Core Measure Set among DC ACOG members. A survey sent to DC ACOG members assessed knowledge, attitudes, and practices related to breastfeeding and evaluated participants' barriers to breastfeeding counseling, management of breastfeeding challenges, and awareness of facility adoption of the PC Core Measure Set. All 29 respondents reported breastfeeding as the best infant nutrition and that physicians should encourage breastfeeding. However, despite 75% reporting counseling most of their patients regarding breastfeeding, only 27% reported that most of their patients were breastfeeding at the postpartum visit. Participants scored 83% correct on knowledge-based questions. Perceived barriers to breastfeeding counseling included lack of time (66%), reimbursement (10%), and competence in managing breastfeeding problems (7%). Most respondents were unsure of both adoption of, and breastfeeding data collection for, the PC Core Measure Set (52% and 55%, respectively). Participants had knowledge gaps and identified barriers to discussing breastfeeding. There was limited awareness of hospital data collection about breastfeeding. These results indicate a need for more breastfeeding education among DC obstetricians-gynecologists and better outreach about the PC Core Measure Set.