A Guide for Policy, Practice and Patients on Wellbeing and Sickle Cell Disorder (SCD)

This guide is based on research examining the shielding experiences of people with sickle cell disorders (SCD) and parents of children with the condition during the COVID-19 pandemic. The aim was to improve NHS services for this population group. Services have duties under the Equality Act 2010 to ensure equity and tackle health inequalities. Since SCD disproportionately affects Black, Asian and Minority Ethnic (BAME) communities, there are also duties not to engage in direct or indirect racist discrimination, nor in harassment or victimization. It is important that anti-racist and anti-bias training is offered in all NHS services and cultural competency encouraged amongst all staff. Additionally, that conditions affecting the BAME population, like SCD, become a mandatory part of all nursing and medical educational and NHS training programmes

A framework for applying natural language processing in digital health interventions

BACKGROUND: Digital health interventions (DHIs) are poised to reduce target symptoms in a scalable, affordable, and empirically supported way. DHIs that involve coaching or clinical support often collect text data from 2 sources: (1) open correspondence between users and the trained practitioners supporting them through a messaging system and (2) text data recorded during the intervention by users, such as diary entries. Natural language processing (NLP) offers methods for analyzing text, augmenting the understanding of intervention effects, and informing therapeutic decision making. OBJECTIVE: This study aimed to present a technical framework that supports the automated analysis of both types of text data often present in DHIs. This framework generates text features and helps to build statistical models to predict target variables, including user engagement, symptom change, and therapeutic outcomes. METHODS: We first discussed various NLP techniques and demonstrated how they are implemented in the presented framework. We then applied the framework in a case study of the Healthy Body Image Program, a Web-based intervention trial for eating disorders (EDs). A total of 372 participants who screened positive for an ED received a DHI aimed at reducing ED psychopathology (including binge eating and purging behaviors) and improving body image. These users generated 37,228 intervention text snippets and exchanged 4285 user-coach messages, which were analyzed using the proposed model. RESULTS: We applied the framework to predict binge eating behavior, resulting in an area under the curve between 0.57 (when applied to new users) and 0.72 (when applied to new symptom reports of known users). In addition, initial evidence indicated that specific text features predicted the therapeutic outcome of reducing ED symptoms. CONCLUSIONS: The case study demonstrates the usefulness of a structured approach to text data analytics. NLP techniques improve the prediction of symptom changes in DHIs. We present a technical framework that can be easily applied in other clinical trials and clinical presentations and encourage other groups to apply the framework in similar contexts

Black Sickle Cell Patients’ Lives Matter: Healthcare, long- term shielding and psychological distress during a racialized pandemic in England – a mixed-methods study

Open accessObjective: To understand the psychological and social impact of shielding on people with sickle cell disorders and their carers in the Midlands region of England. This region was badly affected during the pandemic, with the city of Birmingham having some of the highest rates of COVID-19 deaths. Design: A mixed methods project with a quantitative survey on shielding and adapted SF36 v 2 questionnaire which was supplemented by qualitative semi-structured interviews analysed using Interpretive Phenomenological analysis (IPA). Participants: Fifty-one participants who were predominantly of Black Caribbean or Black African heritage anonymously took part in the online survey. We supplemented this with eight in-depth semi-structured interviews with adults with sickle cell disorders using IPA. Results: The adapted SF36 v2 survey indicated worse quality of life and mental health. The open-ended questions from the adapted survey also identified shielding concerns about hospital care, pain management and knowledge of sickle cell by healthcare professionals. From the interviews it emerged that the racialized element of the pandemic caused significant psychological distress for a population group that had to regularly access hospitals. It was noted that psychological health needs both during a pandemic and outside of it were poorly understood and became invisible in services. The psychological impact of experiences of hospital care as well as growing up with an invisible chronic condition were important to understand psychologically

Associations between early maternal sensitivity and children's sleep throughout early childhood

Despite strong theoretical reasons to believe that the quality of parent-infant interactions should influence child sleep, the empirical evidence for links between maternal behavior and children’s sleep is equivocal. Notably, it is unclear at which ages such influences might be particularly salient. The current study aimed to examine prospective longitudinal associations between early maternal sensitivity and children’s sleep during early childhood. Maternal sensitivity was assessed at 12 months during a home visit. Children’s sleep was measured at 12 and 18 months as well as at 2, 3, and 4 years, using a sleep diary completed by mothers. Results revealed significant or marginal positive associations between maternal sensitivity and children’s sleep consolidation (percentage of nighttime sleep) at 2, 3 and 4 years, but not at the most proximal assessments of 12 and 18 months. These findings suggest that child age could potentially be a key factor in the associations between maternal behavior and children’s sleep

Ask me if I am okay: COVID-19 and the psychological and social impact of long-term shielding experiences of people with sickle cell disorders and their care givers

This pilot mixed methods study wanted to understand the psychological impact, as well as the social needs, of people with sickle cell disorders (SCD) who had been identified as ‘extremely clinically vulnerable’ by the government and had been asked to ‘shield’ at home from the 23rd of March 2020, to when shielding was officially lifted, on the 31st of March 2021. We were also interested in how parents who had SCD and parents of children with the condition were coping. We found that throughout the pandemic, while people’s very basic social needs were being met, their psychological health needs were not

Objective and subjective measures of sleep among preschoolers: Disentangling attachment security and dependency

Many scholars have proposed that parent-child attachment security should favor child sleep. Research has yet, however, to provide convincing support for this hypothesis. The current study used objective measures of sleep and attachment to assess the longitudinal links between mother-child attachment security and subsequent sleep, controlling for child dependency. Sixty-two middle-class families (30 girls) were met twice, when children were 15 months (Wave 1; W1) and 2 years of age (Wave 2; W2). At W1, mother-child attachment was assessed with the observer version of the Attachment Q-Sort. At W2, children wore an actigraph monitor for 72 hours. Results indicated that children more securely attached to their mothers subsequently slept more at night and had higher sleep efficiency, and these predictions were not confounded by child dependency. These findings suggest a unique role for secure attachment relationships in the development of young children’s sleep regulation, while addressing methodological issues that have long precluded consensus in this literature

Associations between sleep consolidation in infancy and peer relationships in middle childhood

Sleep plays an important role in many aspects of children’s development. Research on children’s sleep and their peer relationships has begun to emerge in the last years. However, these studies are mostly cross-sectional. The current study aimed to investigate the associations between infant sleep and peer relationships in middle childhood. The sample comprised 72 children. Sleep was measured at 1 year using a sleep diary completed by mothers. In the second and third grades of elementary school (7 and 8 years of age), mothers and fathers reported on their children’s functioning with peers. When they were in third grade, children were interviewed regarding their friendship quality with a best friend. Results revealed negative associations between children’s sleep consolidation (i.e., ratio of nighttime sleep) and parent-reported peer problems, and positive associations between sleep consolidation and perceived friendship quality. These findings suggest that well-regulated sleep in infancy may help children develop the skills necessary for later appropriate social functioning in peer contexts

Effectiveness of a digital cognitive behavior therapy-guided self-help intervention for eating disorders in college women: A cluster randomized clinical trial

Importance: Eating disorders (EDs) are common, serious psychiatric disorders on college campuses, yet most affected individuals do not receive treatment. Digital interventions have the potential to bridge this gap. Objective: To determine whether a coached, digital, cognitive behavior therapy (CBT) intervention improves outcomes for college women with EDs compared with referral to usual care. Design, Setting, and Participants: This cluster randomized trial was conducted from 2014 to 2018 at 27 US universities. Women with binge-purge EDs (with both threshold and subthreshold presentations) were recruited from enrolled universities. The 690 participants were followed up for up to 2 years after the intervention. Data analysis was performed from February to September 2019. Interventions: Universities were randomized to the intervention, Student Bodies-Eating Disorders, a digital CBT-guided self-help program, or to referral to usual care. Main Outcomes and Measures: The main outcome was change in overall ED psychopathology. Secondary outcomes were abstinence from binge eating and compensatory behaviors, as well as ED behavior frequencies, depression, anxiety, clinical impairment, academic impairment, and realized treatment access. Results: A total of 690 women with EDs (mean [SD] age, 22.12 [4.85] years; 414 [60.0%] White; 120 [17.4%] Hispanic; 512 [74.2%] undergraduates) were included in the analyses. For ED psychopathology, there was a significantly greater reduction in the intervention group compared with the control group at the postintervention assessment (β [SE], -0.44 [0.10]; d = -0.40; t1387 = -4.23; P \u3c .001), as well as over the follow-up period (β [SE], -0.39 [0.12]; d = -0.35; t1387 = -3.30; P \u3c .001). There was not a significant difference in abstinence from any ED behaviors at the postintervention assessment (odds ratio, 1.48; 95% CI, 0.48-4.62; P = .50) or at follow-up (odds ratio, 1.51; 95% CI, 0.63-3.58; P = .36). Compared with the control group, the intervention group had significantly greater reductions in binge eating (rate ratio, 0.82; 95% CI, 0.70-0.96; P = .02), compensatory behaviors (rate ratio, 0.68; 95% CI, 0.54-0.86; P \u3c .001), depression (β [SE], -1.34 [0.53]; d = -0.22; t1387 = -2.52; P = .01), and clinical impairment (β [SE], -2.33 [0.94]; d = -0.21; t1387 = -2.49; P = .01) at the postintervention assessment, with these gains sustained through follow-up for all outcomes except binge eating. Groups did not differ in terms of academic impairment. The majority of intervention participants (318 of 385 participants [83%]) began the intervention, whereas only 28% of control participants (76 of 271 participants with follow-up data available) sought treatment for their ED (odds ratio, 12.36; 95% CI, 8.73-17.51; P \u3c .001). Conclusions and Relevance: In this cluster randomized clinical trial comparing a coached, digital CBT intervention with referral to usual care, the intervention was effective in reducing ED psychopathology, compensatory behaviors, depression, and clinical impairment through long-term follow-up, as well as realizing treatment access. No difference was found between the intervention and control groups for abstinence for all ED behaviors or academic impairment. Given its scalability, a coached, digital, CBT intervention for college women with EDs has the potential to address the wide treatment gap for these disorders. Trial Registration: ClinicalTrials.gov Identifier: NCT02076464

Subaru Weak Lensing Measurements of Four Strong Lensing Clusters: Are Lensing Clusters Over-Concentrated?

We derive radial mass profiles of four strong lensing selected clusters which show prominent giant arcs (Abell 1703, SDSS J1446+3032, SDSS J1531+3414, and SDSS J2111-0115), by combining detailed strong lens modeling with weak lensing shear measured from deep Subaru Suprime-cam images. Weak lensing signals are detected at high significance for all four clusters, whose redshifts range from z=0.28 to 0.64. We demonstrate that adding strong lensing information with known arc redshifts significantly improves constraints on the mass density profile, compared to those obtained from weak lensing alone. While the mass profiles are well fitted by the universal form predicted in N-body simulations of the LCDM model, all four clusters appear to be slightly more centrally concentrated (the concentration parameters c_vir \sim 8) than theoretical predictions, even after accounting for the bias toward higher concentrations inherent in lensing selected samples. Our results are consistent with previous studies which similarly detected a concentration excess, and increases the total number of clusters studied with the combined strong and weak lensing technique to ten. Combining our sample with previous work, we find that clusters with larger Einstein radii are more anomalously concentrated. We also present a detailed model of the lensing cluster A1703 with constraints from multiple image families, and find the dark matter inner density profile to be cuspy with the slope consistent with -1, in agreement with expectations.Comment: 41 pages, 9 figures, 7 tables, accepted for publication in Ap