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Optimizing research on the developmental origins of health and disease (DOHaD) involves implementing initiatives maximizing the use of the available cohort study data; achieving sufficient statistical power to support subgroup analysis; and using participant data presenting adequate follow-up and exposure heterogeneity. It also involves being able to undertake comparison, cross-validation, or replication across data sets. To answer these requirements, cohort study data need to be findable, accessible, interoperable, and reusable (FAIR), and more particularly, it often needs to be harmonized. Harmonization is required to achieve or improve comparability of the putatively equivalent measures collected by different studies on different individuals. Although the characteristics of the research initiatives generating and using harmonized data vary extensively, all are confronted by similar issues. Having to collate, understand, process, host, and co-analyze data from individual cohort studies is particularly challenging. The scientific success and timely management of projects can be facilitated by an ensemble of factors. The current document provides an overview of the ‘life course’ of research projects requiring harmonization of existing data and highlights key elements to be considered from the inception to the end of the project.
Exposure to maternal hyperglycemia in utero has been associated with adverse metabolic outcomes in offspring. However, few studies have investigated the relationship between maternal hyperglycemia and offspring cortisol levels. We assessed associations of gestational diabetes mellitus (GDM) with cortisol biomarkers in two longitudinal prebirth cohorts: Project Viva included 928 mother–child pairs and Gen3G included 313 mother–child pairs. In Project Viva, GDM was diagnosed in N = 48 (5.2%) women using a two-step procedure (50 g glucose challenge test, if abnormal followed by 100 g oral glucose tolerance test [OGTT]), and in N = 29 (9.3%) women participating in Gen3G using one-step 75 g OGTT. In Project Viva, we measured cord blood glucocorticoids and child hair cortisol levels during mid-childhood (mean (SD) age: 7.8 (0.8) years) and early adolescence (mean (SD) age: 13.2 (0.9) years). In Gen3G, we measured hair cortisol at 5.4 (0.3) years. We used multivariable linear regression to examine associations of GDM with offspring cortisol, adjusting for child age and sex, maternal prepregnancy body mass index, education, and socioeconomic status. We additionally adjusted for child race/ethnicity in the cord blood analyses. In both Project Viva and Gen3G, we observed null associations of GDM and maternal glucose markers in pregnancy with cortisol biomarkers in cord blood at birth (β = 16.6 nmol/L, 95% CI −60.7, 94.0 in Project Viva) and in hair samples during childhood (β = −0.56 pg/mg, 95% CI −1.16, 0.04 in Project Viva; β = 0.09 pg/mg, 95% CI −0.38, 0.57 in Gen3G). Our findings do not support the hypothesis that maternal hyperglycemia is related to hypothalamic–pituitary–adrenal axis activity.
Racial disparities in colorectal cancer (CRC) can be addressed through increased adherence to screening guidelines. In real-life encounters, patients may be more willing to follow screening recommendations delivered by a race concordant clinician. The growth of telehealth to deliver care provides an opportunity to explore whether these effects translate to a virtual setting. The primary purpose of this pilot study is to explore the relationships between virtual clinician (VC) characteristics and CRC screening intentions after engagement with a telehealth intervention leveraging technology to deliver tailored CRC prevention messaging.
Using a posttest-only design with three factors (VC race-matching, VC gender, intervention type), participants (N = 2267) were randomised to one of eight intervention treatments. Participants self-reported perceptions and behavioral intentions.
The benefits of matching participants with a racially similar VC trended positive but did not reach statistical significance. Specifically, race-matching positively influenced screening intentions for Black participants but not for Whites (b = 0.29, p = 0.10). Importantly, perceptions of credibility, attractiveness, and message relevance significantly influenced screening intentions and the relationship with race-matching.
To reduce racial CRC screening disparities, investments are needed to identify patient-focused interventions to address structural barriers to screening. This study suggests that telehealth interventions that match Black patients with a Black VC can enhance perceptions of credibility and message relevance, which may then improve screening intentions. Future research is needed to examine how to increase VC credibility and attractiveness, as well as message relevance without race-matching.
To assess the sexual and reproductive health (SRH) needs of women admitted to a psychiatric intensive care unit (PICU), and acceptability of delivering specialist SRH assessments and interventions in this setting. Within a quality improvement framework, staff were trained, a clinical protocol developed and clinical interventions made accessible.
Thirty per cent of women were identified as having unmet SRH needs and proceeded to a specialist appointment, representing a 2.5-fold increase in unmet need detection. Forty-two per cent of women were assessed, representing a 3.5-fold increase in uptake. Twenty-one per cent of women initiated SRH interventions, of which 14% had all their SRH needs met. Staff, patients and carers highlighted the acceptability and importance of SRH care, if interventions were appropriately timed and patients’ individual risk profiles were considered. Barriers to access included lack of routine enquiry, illness acuity and impact of the COVID-19 pandemic.
SRH needs for PICU admissions are greater than previously realised. Providing a nurse-led SRH assessment is acceptable, feasible and beneficial for PICU patients.
Every year in Australia over a thousand children who are born with congenital heart disease require surgical intervention. Vocal cord dysfunction (VCD) can be an unavoidable and potentially devastating complication of surgery for congenital heart disease. Structured, multidisciplinary care pathways help to guide clinical care and reduce mortality and morbidity. An implementation study was conducted to embed a novel, multidisciplinary management pathway into practice using the consolidated framework for implementation research (CFIR). The goal of the pathway was to prepare children with postoperative vocal cord dysfunction to safely commence and transition to oral feeding. Education sessions to support pathway rollout were completed with clinical stakeholders. Other implementation strategies used included adaptation of the pre-procedural pathway to obtain consent, improving the process of identifying patients on the VCD pathway, and nominating a small team who were responsible for the ongoing monitoring of patients following recruitment. Implementation success was evaluated according to compliance with pathway defined management. Our study found that while there were several barriers to pathway adoption, implementation of the pathway was feasible despite pathway adaptations that were required in response to COVID-19.
Caregiving for cancer and HIV/AIDS patients is complex, and the burden may vary with the type of disease, stages of the illness, and the type of palliative care intervention. Cancer and HIV/AIDS diagnosis and treatment adversely affect not only the patients but also their families and caregivers. They are vulnerable to stress, distress, and depression. Studies in developed countries have shown high prevalence of depression among family caregivers, but the scale of the problem among family caregivers in Uganda is not known.
This study aimed to establish the prevalence and factors associated with depressive symptoms among family caregivers of palliative care patients at Hospice Africa Uganda.
We used a mixed method study to determine the prevalence and factors associated with depressive symptoms among family caregivers of palliative care patients at Hospice Africa Uganda. We assessed depressive symptoms using the Patient Health Questionnaire-9 (PHQ-9) and collected socio-demographic data using a tailored questionnaire. We used binary logistic regression to assess for the association between depressive symptomatology and caregiver socio-demographic and clinical characteristics.
We recruited 161 family caregivers, 64% of whom were female. The study revealed a high prevalence of depressive symptoms (46%) (n = 74) among the family caregivers. Education status and religious affiliation were significantly associated with depressive symptomatology.
Significance of results
Family caregivers of palliative care patients face a high burden of depressive symptoms. Efforts to care for family caregivers within palliative care should include assessment and management of depressive symptoms in this population.
This book set out to illuminate the personal, everyday effects of hard times for children, young people and families in diverse global contexts. In this concluding chapter, we begin by outlining the contribution of the three Parts of the book and their constituent chapters to our understanding of the hard times which interlace with the lives of children, youth and families. Our focus on ‘hard times’ aims to shed light on all manner of structural inequalities, longstanding exclusions and power imbalances which are being constituted or intensified by neoliberalisations, austerities and economic crises. Elucidating the implications of these complexly relational, hurtful and deeply affecting moments leads us to reflect on the opportunities and prospects for socially-differentiated children and young people getting by and growing up in hard times. In bringing together neoliberalisations, austerities and economic crises, we recognise how these processes are lumped together, materially and spatially (Katz, 2004; 2018) and in people's everyday experiences. Drawing the collection to a close, we consider further directions for research which is sensitive to the interrelations between broadscale political-economic shifts and locally-scaled, personally inflected inequalities.
Examining hard times: a collection
Divided into three key Parts, the collection began with an exploration of the transformative impacts of hard times for children, youth and families at the sharp end of neoliberalisms, austerities and economic crises. Drawing on work from diverse international contexts, Part 1 explored the transformations which play out unevenly at personal, familial and local scales as a result of political-economic processes. The chapters detail how hard times impinge on the discursive norms and deeply-rooted social inequalities which pervade the lives of children, youth and families. In Part 2 of the book, our contributors sketch out the ways in which the contours of hard times intersect with axes of social difference to produce new or intensified forms of poverty and inequality. The chapters outline how alongside experiences of precarity and marginalisation, social ties and moral responsibilities are being refashioned, moderated or entrenched in the lives of children, youth and families. Heteropatriarchal familial norms, intergenerational obligations, discourses of normative childhoods and politics of poverty coalesce with marginality and inequalities, constituting variegated experiences of hard times.
This collection gives voice to children, young people and families at the sharp end of contemporary processes of neoliberalisations, austerities and economic crises in diverse global contexts. We wish this book was not necessary or timely. However, as three geographers who have worked with many children, young people and families in different settings over the last 15 years, we are writing from a deep sense of sadness and urgency. This book has developed out of our anger and concern that the lives and prospects of so many of our research participants have demonstrably been adversely affected by manifestations of neoliberalisations, austerities and economic crises. The book is also written from heartbreak that our own communities, families and lifecourses have been profoundly affected by the same horrible processes. So as a point of departure, the following three vignettes from our research introduce some key terms, processes and deeply affecting encounters which echo throughout the following chapters.
John's research: just getting on with austerities, or ‘we’re fucked’?
During the global financial crisis of 2007–08, John was in the middle of several research projects based in spaces of play, youthwork and social care in the English Midlands. These spaces and communities were radically transformed by subsequent public sector funding cuts. Literally all of the youth organisations John worked with back then have now closed; literally all of the youthworkers and practitioners he worked with were made redundant. Within a few years entire, taken-for-granted categories of work/space (‘the public library’, ‘the statutory youth service’) were downsized, decommissioned and – apparently permanently – deemed unviable. John has written about some of these experiences (Horton, 2016; 2020) but, to be honest, finds it a bit too difficult. John holds on to the way many young people from these contexts demonstrated such tenacity, care and solidarity: ‘a kind of modest, resigned, sometimes-determined acceptance’ and capacity to ‘just get on’ with their lives and communities (Horton, 2017: 287). On the other hand, John can still hear a research participant talking about the probable closure of a particular service: they simply said ‘we’re fucked’ and walked away.
This book explores how children, young people and families cope with situations of socio-economic poverty and precarity in diverse international contexts and looks at the evidence of the harms and inequalities caused by these processes.