Variability in sickle cell knowledge by sickle cell status.

Disease-specific knowledge allows individuals with sickle cell disease, sickle cell trait, and unaffected family members alike to make informed decisions and support those affected by the condition. The current study assesses how sickle cell knowledge varies by disease status within families affected by sickle cell disease. One hundred seventy-nine participants from 84 families completed an online survey and telephone interview. Generalized linear models, with generalized estimating equations, were fitted to evaluate differences in both item-level responses and total scores on the Sickle Cell Knowledge Scale by sickle cell status. Those with negative or unknown sickle cell status scored significantly lower than those with sickle cell disease or trait, despite being related to someone with sickle cell disease (χ2 (2) = 9.72, p = 0.008). Overall, participants performed poorly on items related to sickle cell trait, with limited understanding of autosomal recessive inheritance patterns. The study's findings suggest a need to move beyond patient-centered approaches to family-centered education efforts that reach those with sickle cell traits and negative or unknown status. Findings point to knowledge gaps related to sickle cell trait and patterns of inheritance, representing key enhancement areas for future sickle cell education efforts.

Life under stay-at-home orders: a panel study of change in social interaction and emotional wellbeing among older Americans during COVID-19 pandemic.

BACKGROUND: Recent research has shown the mental health consequence of social distancing during the COVID-19 pandemic, but longitudinal data are relatively scarce. It is unclear whether the pattern of isolation and elevated stress seen at the beginning of the pandemic persists over time. This study evaluates change in social interaction over six months and its impact on emotional wellbeing among older adults. METHODS: We drew data from a panel study with six repeated assessments of social interaction and emotional wellbeing conducted monthly May through October 2020. The sample included a total of 380 White, Black and Hispanic participants aged 50 and over, of whom 33% had low income, who residing in fourteen U.S. states with active stay-at-home orders in May 2020. The analysis examined how change in living arrangement, in-person interaction outside the household, quality of relationship with family and friends, and perceived social support affected trajectories of isolation stress, COVID worry and sadness. RESULTS: While their living arrangements (Odds Ratio [OR] = 0.95, 95% Confidence Interval [CI] = 0.87, 1.03) and relationship quality (OR = 0.94, 95% CI = 0.82, 1.01) remained stable, older adults experienced fluctuations in perceived social support (linear Slope b = -1.42, s.e. = 0.16, p < .001, quadratic slope b = 0.50, s.e. = 0.08, p < .001, cubic slope b = -0.04, s.e. = 0.01, p < .001) and increases in in-person conversations outside the household (OR = 1.19, 95% CI = 1.09, 1.29). Living with a spouse/partner stabilized isolation stress (change in linear slope b = 1.16, s.e. = 0.48, p < .05, in quadratic slope b = -0.62, s.e. = 0.26, p < .05, and in cubic slope = 0.09, s.e. = 0.04, p < .05) and COVID worry (change in quadratic slope b = -0.66, s.e. = 0.32, p < .05 and in cubic slope = 0.09, s.e. = 0.04, p < .05) over time. Individuals with better relationship quality with friends had decreased sadness over time (OR = 0.90, 95% CI = 0.82, 0.99). Changes in social support were associated with greater fluctuations in isolation stress and COVID worry. CONCLUSIONS: During the pandemic, social interactions are protective and lack of stability in feeling supported makes older adults vulnerable to stress. Efforts should focus on (re)building and maintaining companionship and support to mitigate the pandemic's negative impact.