'I don't want him to always be so far behind': Parental perceptions of child independence in the context of extreme prematurity; a qualitative study.

This study addresses the paucity of research on parents of extremely preterm adolescents (born <27 weeks of gestation) and their experiences within the framework of parental determinism. We conducted semi-structured interviews with twenty-two mothers and one father. Data were analysed thematically, revealing three overarching themes and eight subthemes shaping parental accounts. These themes centred on parental ambitions for their children, their perceptions of their child's abilities, and the parenting behaviours employed to support parental aspirations. Parents' actions were influenced by their ambitions and the belief that they could impact their child's future independence. While some parents adopted 'trusting', non-intensive parenting behaviours, those anticipating challenges for their child's future independence resorted to intensive parenting practices. These findings align with the concept of parental determinism, emphasising the perceived causal link between present parental actions and future child outcomes. In the context of extreme prematurity, a nuanced understanding of parental perceptions regarding their child's future independence aligned with a delicate balance between hope and realistic aspiration is crucial for enhancing parental support and well-being.

Depression is associated with poor self-reported adherence to antiretroviral therapy among people living with HIV attending an HIV clinic in the UK: results from a cross-sectional study.

Contemporary evidence is needed to assess whether the prevalence of depression remains high among people living with HIV in the United Kingdom despite recent efforts to improve patients' mental health, and if depression is negatively associated with individuals' adherence to antiretroviral therapy. In a secondary analysis of a cross-sectional clinic-based survey of alcohol consumption and associated health behaviour among people living with HIV in London, of the 221 respondents, 106 (48%) had poor self-reported adherence to antiretroviral therapy (CASE Index) and 69 (31%) screened positive for depression (PHQ-9). Poor self-reported adherence to ART was 72% higher among participants who screened positive for depression in comparison with participants who screened negative. Respondents who were younger, unemployed, and reported problematic drug use were more likely to screen positive for depression. Screening and management of depression as a part of routine HIV care may support adherence to antiretroviral therapy.

Parenting stress and health-related quality of life among parents of extremely preterm born early adolescents in England: a cross-sectional study.

OBJECTIVE: To determine whether extremely preterm (EP) birth exerts persisting effects on parents in early adolescence. DESIGN: Cross-sectional survey conducted between March 2017 and October 2018. SETTING: Evaluation of a longitudinal population-based birth cohort in England at 11 years of age (EPICure2@11 Study). PARTICIPANTS: Parents of EP (<27 weeks of gestation) adolescents and control parents of term born (≥37 weeks of gestation) classmates of similar age and sex. MAIN OUTCOME MEASURES: The Parenting Stress Index Short Form (PSI-4-SF) and the Short Form Health Survey (SF-12v1). RESULTS: The 163 EP and 125 comparison respondents were most commonly mothers in their mid-40s. EP parents reported higher total parenting stress scores compared with controls, overall (adjusted difference in means: 14 (95% CI 9 to 20)) and after exclusion of moderate and severe child disability and multiples (9 (95% CI 3 to 15). Average physical and mental health-related quality of life scores were similar in the two groups (adjusted difference in means physical health: -2 (95% CI -4 to 1) and mental health: -1 (95% CI -4 to 1)). Among EP parents, 12% (20/164) reported the combination of high parenting stress and low mental health scores. With increasing child age, parenting stress scores for preterm parents were lower in contrast to controls who reported increasing parenting stress. CONCLUSIONS: In early adolescence, compared with parents of term-born children, EP parents experience increased levels of parenting stress that are particularly high among a proportion of parents and associated with lower mental health-related quality of life. Practitioner awareness of this continuing risk throughout childhood is important to support parental abilities and well-being.

Neuropsychological abilities underpinning academic attainment in children born extremely preterm.

Children born extremely preterm (EP) have poorer academic attainment than their term-born peers. There is a need to identify the specific cognitive mechanisms that are associated with poor academic attainment in preterm populations to inform the development of intervention strategies. A parallel mediation analysis was conducted with cross-sectional data from 152 EP children (< 27 weeks of gestation) and 120 term-born controls who were assessed at age 11. Mathematics and reading attainment was assessed using the Wechsler Individual Achievement Test 2nd Edition. Controlling for sex and socio-economic status we evaluated the following mediators: verbal working memory, visuospatial working memory, verbal processing speed, attention, and visuospatial processing. These were assessed using subtests from the standardized NEPSY-II test and Wechsler Intelligence Scale for Children-5th Edition. Verbal working memory, visuospatial working memory, visuospatial processing and verbal processing speed, but not attention, were significant independent mediators between EP birth and attainment in reading. No direct relationship between EP birth and reading attainment remained in the mediated model. All five neuropsychological variables mediated the relationship between EP birth and attainment in mathematics, but a direct effect of EP birth on mathematics remained in the mediated model. Together, all five neuropsychological abilities indirectly explained 44% of the variance in reading and 52% of the variance in mathematics. Visuospatial processing was the strongest mediator of both mathematics and reading. Components of executive function, especially visuospatial processing, are important predictors of academic attainment. Interventions to improve visuospatial skills could be trialed in EP populations.

Growth in extremely preterm children born in England in 1995 and 2006: the EPICure studies.

OBJECTIVES: To determine growth outcomes at 11 years of age in children born <27 weeks of gestation in England in 2006 (EPICure2) and to compare growth from birth to 11 years of age for births<26 weeks with those in England in 1995 (EPICure). METHODS: 200 EPICure2 children assessed at 11 years alongside 143 term-born controls. Growth measures from birth to 11 years were compared for births<26 weeks between EPICure2 (n=112) and EPICure (n=176). Growth parameter z-scores were derived from 1990 UK standards. RESULTS: Among EPICure2 children, mean z-scores for height and weight were close to the population standards (0.08 and 0.18 SD, respectively) but significantly below those of controls: difference in mean (Δ) z-scores for weight -0.42 SD (95% CI -0.68 to -0.17), for height -0.45 SD (-0.70 to -0.20) and for head circumference (HC) -1.05 SD (-1.35 to -0.75); mean body mass index (BMI) z-score in EPICure2 children was 0.18 SD, not significantly different from controls (0.43 SD, p=0.065). Compared with EPICure, EPICure2 children born <26 weeks at 11 years had higher z-scores for weight (Δ 0.72 (0.47, 0.96)), height (Δ 0.55 (0.29, 0.81)) and BMI (Δ 0.56 (0.24, 0.87)), which were not fully explained by perinatal/demographic differences between eras. Weight catch-up was greater from term-age to 2.5/3 years in EPICure2 than in EPICure (1.25 SD vs 0.53 SD; p<0.001). Poor HC growth was observed in EPICure2, unchanged from EPICure. CONCLUSIONS: Since 1995, childhood growth in weight, height and BMI have improved for births <26 weeks of gestation, but there was no improvement in head growth.

Disturbed sleep in children born extremely preterm is associated with behavioural and emotional symptoms.

AIM: To determine whether children born extremely preterm are at increased risk for sleep disturbances and to explore relationships between extremely preterm birth, sleep and attention-deficit/hyperactivity disorder (ADHD) symptoms and emotional symptoms. METHOD: EPICure2 cohort study. Parents of 165 children born ≤26 weeks' gestation (53% male) and 121 children born at term (43% male) completed the Children's Sleep Habits Questionnaire, sleep disordered breathing subscale of the Pediatric Sleep Questionnaire, the emotional problems scale of the Strengths and Difficulties Questionnaire and the ADHD Rating Scale-5 at 11 years of age. RESULTS: Extremely preterm children had greater habitual snoring (adjusted odds ratio 6.8; 95% confidence interval 2.3, 20.3), less frequently fell asleep within 20 minutes (Cohen's d 0.33), higher night wakings (d 0.44) and daytime sleepiness scores (d 0.40) than term-born children; there was no between-group difference in sleep duration scores. Among children without severe disability, night wakings scores partially mediated the relationship between preterm birth and inattention (additional 5% of variance explained), hyperactivity/impulsivity (13%) and emotional problems (9%). Snoring partially mediated the relationship between preterm birth, hyperactivity/impulsivity and inattention (additional 1-5% of variance). CONCLUSION: Children born extremely preterm are at increased risk of disturbed sleep compared to term-born children. As night wakings partially mediated the relationship between preterm birth and ADHD symptoms and emotional problems, reducing sleep disturbance may improve sleep and reduce attention and emotional problems in this population.

No change in neurodevelopment at 11 years after extremely preterm birth.

OBJECTIVE: To determine whether improvements in school age outcomes had occurred between two cohorts of births at 22-25 weeks of gestation to women residents in England in 1995 and 2006. DESIGN: Longitudinal national cohort studies. SETTING: School-based or home-based assessments at 11 years of age. PARTICIPANTS: EPICure2 cohort of births at 22-26 weeks of gestation in England during 2006: a sample of 200 of 1031 survivors were evaluated; outcomes for 112 children born at 22-25 weeks of gestation were compared with those of 176 born in England during 1995 from the EPICure cohort. Classroom controls for each group acted as a reference population. MAIN OUTCOME MEASURES: Standardised measures of cognition and academic attainment were combined with parent report of other impairments to estimate overall neurodevelopmental status. RESULTS: At 11 years in EPICure2, 18% had severe and 20% moderate impairments. Comparing births at 22-25 weeks in EPICure2 (n=112), 26% had severe and 21% moderate impairment compared with 18% and 32%, respectively, in EPICure. After adjustment, the OR of moderate or severe neurodevelopmental impairment in 2006 compared with 1995 was 0.76 (95% CI 0.45 to 1.31, p=0.32). IQ scores were similar in 1995 (mean 82.7, SD 18.4) and 2006 (81.4, SD 19.2), adjusted difference in mean z-scores 0.2 SD (95% CI -0.2 to 0.6), as were attainment test scores. The use of multiple imputation did not alter these findings. CONCLUSION: Improvements in care and survival between 1995 and 2006 are not paralleled by improved cognitive or educational outcomes or a reduced rate of neurodevelopmental impairment.

Risky Alcohol Consumption and Associated Health Behaviour Among HIV-Positive and HIV-Negative Patients in a UK Sexual Health and HIV Clinic: A Cross-Sectional Questionnaire Study.

Alcohol misuse has been associated with negative consequences among HIV-positive patients. Data on real prevalence of risky alcohol consumption among the HIV-positive population in the UK are lacking. A cross-sectional questionnaire study using standardised validated instruments among HIV-positive (n = 227) and HIV-negative (n = 69) patients was performed. The prevalence of risky alcohol consumption (AUDIT) and associations with depressive symptoms (PHQ-9), problematic drug use (DUDIT), adherence to ART (CASE Adherence Index), sexual behaviour and demographic characteristics were assessed among both patient groups independently. A quarter (25.1%) of HIV-positive patients and 36.1% of HIV-negative patients reported risky alcohol consumption (AUDIT-score ≥ 8). In the multivariable analysis among HIV-positive patients depressive symptoms (p = 0.03) and problematic drug use (p = 0.007) were associated with risky alcohol consumption. Among HIV-negative patients these associations were not present. Risky alcohol consumption among HIV-positive patients is prevalent, and together with depressive symptoms and problematic drug use, may influence HIV-disease progression and patients' wellbeing.

Documentation in the neonatal unit: The support given to parents and their participation in their baby's care.

AIMS: The aim of this study was to explore how often the participation of parents in their infants' care and professionals' support for parents was documented in the clinical records and to determine how such participation and support were documented. BACKGROUND: Comprehensive documentation can facilitate collaboration between parents and healthcare professionals, supporting family-centred care, yet little is known about how this is reflected in practice. DESIGN: A prospective, mixed methods approach was used to analyse the clinical records of newborns. METHODS: The study was carried out in a large tertiary Neonatal Unit in the United Kingdom, from 2013 - 2014. We analysed the clinical records of 24 critically ill newborns using content analysis and thematic analysis, enabling us to determine the frequency of documented support and participation and how support and participation were documented. RESULTS: We identified four categories of support in the clinical records: "emotional", "spiritual", "social" and "practical support". We also identified instances where parents were encouraged to participate in their infant's care. Frequency differences in the documentation of support between infants facing a redirection of care decision and infants receiving active treatment were found. Two organisational themes were identified: "task focused documentation" and "minimal documentation of parental role". These were grouped together under the global theme "professional accountability". The perspectives and experiences of parents were minimally documented throughout. CONCLUSION: Documentation of support towards parents and parents' participation in their infants' care was limited in terms of frequency and content. Encouraging regular, detailed documentation of these aspects of care may facilitate family-centred care.