A qualitative study of maternal and paternal parenting knowledge and practices in rural Mozambique.

BACKGROUND: Providing nurturing care for young children is essential for promoting early child development (ECD). However, there is limited knowledge about how mothers and fathers across diverse contexts in sub-Saharan Africa care for their children and from whom they receive guidance and support in their caregiving roles. We aimed to examine caregivers' nurturing care practices and sources of parenting knowledge in rural Mozambique. METHODS: This is a secondary analysis using data from a qualitative evaluation of a pilot intervention to improve nurturing care for early child health and development within existing health systems. The evaluation was conducted across three primary care health facilities and their catchment areas in Nampula province, Mozambique. For this study, we analyzed data from in-depth interviews conducted with 36 caregivers (32 mothers and 4 fathers) to investigate mothers' and fathers' daily caregiving experiences. Data were analyzed using thematic content analysis. RESULTS: Caregivers described various caregiving roles relating to general caregiving of young children (e.g., feeding, bathing, caring for child's health) and stimulation (e.g., play and communication) activities. Mothers more commonly engaged in general caregiving activities than fathers, whereas both mothers and fathers engaged in stimulation activities. Other family members, including siblings, grandparents, and aunts/uncles, were also actively engaged in general caregiving activities. With respect to sources of parenting knowledge, caregivers received parenting guidance and support primarily from their own mothers/parents and facility-based health providers. CONCLUSIONS: These findings highlight the importance of adopting a holistic approach involving caregivers and their context and reveal potential strategies to promote caregiving and ECD in rural Mozambique and similar contexts.

Math talk by mothers, fathers, and toddlers: Differences across materials and associations with children's math understanding.

Learning words for numbers, shapes, spatial relations, and magnitudes-"math talk"-relies on input from caregivers. Language interactions between caregivers and children are situated in activity contexts and likely affected by available materials. Here, we examined how play materials influence the math talk directed to and produced by young children. We video-recorded parents (mothers and fathers; English- and/or Spanish-speaking) and their 24- to 36-month-olds during play with four sets of materials, transcribed and coded types of parent and toddler math words/phrases, and assessed toddlers' understanding of number, shape, and spatial relations terms. Categories of math words varied by materials. Numeracy talk (e.g., "one," "two," "first," "second") was more frequent during interactions with a picture book and toy grocery shopping set than with a shape sorter or magnet board; the reverse held for spatial talk (e.g., "out," "bottom," "up," "circle"). Parent math talk predicted toddler math talk, and both parent and toddler math talk predicted toddlers' understanding of spatial and number words. Different materials provide unique opportunities for toddlers to learn abstract math words during interactions with caregivers, and such interactions support early math cognition.

Survey of rehabilitation approaches and plans for individuals with dravet syndrome (RAPIDS) in Italy: Current practices and strategies to progress.

Dravet syndrome, a developmental and epileptic encephalopathy, manifests with varying degrees of cognitive and communication impairment, postural and movement disorders (such as ataxia, coordination issues, and crouch gait) and behavioural challenges (including attention deficit/hyperactivity, oppositional/defiant behaviour, and autistic traits). Rehabilitation is a valuable tool for most patients, typically prescribed to address the most pressing issues. However, current practices often fall short in proactively preventing and treating known challenges associated with the syndrome, as indicated by the latest literature, at different life stages. Furthermore, there is a notable lack of evidence regarding treatment types and efficacy specific to people with Dravet Syndrome. Conducted in collaboration with one of the Italian Patient associations, this national survey provides a comprehensive view of the rehabilitation landscape in Dravet Syndrome, as perceived by caregivers. It outlines the types of treatments for 51 patients, based on age and relevant clinical features. The findings reveal a heterogenous rehabilitation approach, only partly tailored to the presence of specific comorbidities, and underline numerous unmet needs. Compared to the past there is indirect evidence that more patients are offered early rehabilitation. Nonetheless, while nowadays speech therapy and neuropsychomotor therapy are nearly universal for children up to the age of 10, some begin physiotherapy and psychotherapy thereafter, with a majority discontinuing treatments. Therefore, families of adolescent and adult patients often face a lack of comprehensive support, predominantly offered when epilepsy is more challenging to control affecting rehabilitation adherence and effectiveness. Finally, a negligible minority is offered treatments such as neurovisual training, augmentative and alternative communication, and occupational therapy. Many of these considerations could apply to other developmental and epileptic encephalopathy with lifelong disability. This survey calls for more data collection on this important topic for more efficient allocation of rehabilitation resources.

The Intergenerational Effects From Structural Racism Cost Our Society Greatly.

Structural racism is historically rooted, and has been a foundation for United States immigration policy. This injustice has intergenerational effects that cost society greatly - with impacts on social cohesion, individual and collective health, and well-being, and ultimately our ability to function as a civil society. Limited pathways to citizenship and major restrictions to resources that promote integration have adverse consequences for immigrants and, their families. Research shows that children experience toxic stress that negatively impacts their long-term health and development from heightened immigration enforcement, regardless of any personal impact. In embracing the next generation of children, we will not succeed unless we support sound integration policies that promote the health and well-being of immigrant families across this nation. We must recognize how intricately our fates and our health are tied to each other; we all depend on immigrants being well. We must advance new a social contract, one that counters the 'othering' of immigrants" and recognizes that we must invest in the health and well-being of all families.

Does Being In-Person Matter? Demonstrating the Feasibility and Reliability of Fully Remote Observational Data Collection.

Many conventional research methods employed in randomized controlled trials were not possible during the height of the COVID-19 pandemic. In particular, behavioral observations are nearly universally gathered in-person. Observational methods are valued for the rich, informative data they produce in comparison to non-observational methods and are a cornerstone of parenting and family research. COVID provided the opportunity to, and indeed necessitated, the transition to fully remote observation. However, little to no studies have investigated whether remotely collected observational data are methodologically sound. This paper assesses the feasibility of remote data collection by describing the transition between in-person and fully remote observational data collection during a Sequential, Multiple Assignment, Randomized Trial (SMART) of a parenting program that took place both before and during the pandemic. Using mixed-methods data from coders, the overall quality of video-recorded data collected both before and during COVID was examined. Coder reliability over time was assessed with intraclass correlation coefficients. Results suggest that the frequency of audio problems, the severity of visual problems, and the level of administration challenges decreased after transitioning to remote data collection. Additionally, coders showed good to excellent reliability coding remotely collected data, and reliability even improved on some measured tasks. Although challenges to remote data collection exist, this study demonstrated that observational data can be collected feasibly and reliably. As observational data collection is a key method to assess parenting practices, these findings should improve researcher confidence in utilizing remote observational methods in prevention science.

The Effects of the 2021 Child Tax Credit on Housing Affordability and the Living Arrangements of Families With Low Incomes.

Access to safe and stable housing is important for child and adult well-being. Yet many low-income households face severe challenges in maintaining stable housing. In this article, we examine the impact of the 2021 temporary expansion to the Child Tax Credit (CTC) on housing affordability and the living arrangements of families with low incomes. We employ a parameterized difference-in-differences method and leverage national data from a sample of parents who are receiving or recently received Supplemental Nutrition Assistance Program benefits (N = ∼20,500), many of whom became newly eligible for the CTC. We find that the monthly CTC reduced parents' past-due rent/mortgages (both amounts and incidence) and their reports of potential moves due to difficulties affording rent/mortgages. The CTC increased the likelihood that parents reported a change in their living arrangements and reduced their household size, both effects driven by fewer mothers living with a partner (and not a reduction in doubling up). We find some differences in effects by race and ethnicity and earnings. Our findings illustrate that the monthly credit improved low-income parents' ability to afford housing, gain residential independence from partners, and reduce the number of people residing in their household.

Approaches to nutrition and feeding in congenital diaphragmatic hernia.

In patients with congenital diaphragmatic hernia1, nutrition can represent a challenge both in the short and long term. Its failure to resolve can have a significant impact on multiple aspects of the lives of patients with congenital diaphragmatic hernia (CDH), ranging from lung function to neurodevelopment. In this review, we will describe the causes of nutritional problems in patients with CDH, their consequences, and possible strategies to address them.

Understanding how children and young people with chronic non-cancer pain and their families experience living with pain, pain management and services: a meta-ethnography.

Background: Childhood chronic pain is a widespread public health issue. We need to understand how children with chronic pain and their families experience chronic pain and its management. Objectives: To conduct a meta-ethnography on the experiences and perceptions of children with chronic pain and their families of chronic pain, treatments and services. We investigated how children and their families conceptualise and live with chronic pain; what they think of and want from health and social care services; and what they conceptualise as 'good' pain management. Design: Meta-ethnography with stakeholder and patient and public involvement in the design, search and sampling strategies, analysis and dissemination. Review strategy: comprehensive searches of 12 bibliographic databases and supplementary searches in September 2022, to identify qualitative studies with children aged 3 months to 18 years with chronic non-cancer pain and their families. We included studies with rich explanatory data; appraised methodological limitations using the Critical Appraisal Skills Programme tool; and extracted, analysed and synthesised studies' findings. We used Grading of Recommendations Assessment, Development and Evaluation-confidence in the evidence from reviews of qualitative research to assess confidence in review findings. We integrated findings with 14 Cochrane treatment effectiveness reviews on children's chronic non-cancer pain. Results: We synthesised 43 studies sampled from 170 eligible studies reported in 182 publications. Studies had minor (n = 24) or moderate (n = 19) methodological limitations. Grading of Recommendations Assessment, Development and Evaluation-confidence in the evidence from reviews of qualitative research assessments of review findings were high (n = 22), moderate (n = 13) or very low confidence (n = 1). Moderate and severe chronic pain had profound adverse impacts on family members' well-being, autonomy and self-identity; family dynamics; parenting approaches; friendships and socialising; children's education and parental paid employment. Most children and families sought a biomedical cure for pain. They experienced difficulties seeking and receiving support from health services to manage pain and its impacts. Consequently, some families repeatedly visited health services. Cochrane reviews of intervention effects and trials did not measure some outcomes important to children and families, for example effects of pain on the family and resolution of pain. Reviews have mainly neglected a biopsychosocial approach when considering how interventions work. Limitations: There were limited data on common pain conditions like migraine/headache, abdominal pain; some rarer conditions; children with learning disabilities and under-fives; siblings; fathers and experiences of treatments/services. We excluded studies on cancer, end-of-life pain and experiences of healthcare professionals. Conclusions: We developed the family-centred theory of children's chronic pain management, integrating health and social care with community support. Future work: Future research should explore families' experiences of services and treatments, including opioids, and social care services; experiences of children with autism and learning disabilities, under 5 years old and with certain common pain conditions. We need development and testing of family-centred interventions and services. Study registration: This study is registered as PROSPERO (CRD42019161455) and Cochrane Pain, Palliative and Supportive Care (623). Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR128671) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 17. See the NIHR Funding and Awards website for further award information.

Chronic pain lasting 3 months or more affects at least 8% of children in the UK. It causes difficulties with many aspects of children's lives including relationships, school attendance and use of National Health Services. In the UK, there are few specialist services and a lack of high-quality research for managing children's chronic pain. Our study aimed to locate and pull together existing research on the experiences and views of children with chronic pain and their families. We wanted to find out how they think about and live with chronic pain, and their views and experiences of services and treatments, and what they want to achieve from them. We conducted this study alongside children with chronic pain and their families, charities, healthcare professionals and academic experts. They helped us to conduct the study and to ensure our findings are relevant to children, families and the National Health Service. We pulled together data from 43 studies that best answered our questions. We found that moderate and severe children's chronic pain that was not well managed affected the whole family, including their relationships and social lives. Families found it difficult to get help and a diagnosis from health services. Most families wanted a medical cure for pain. Families had long waits for answers and treatment but gradually realised there may be no cure, so they focused on living well with pain or gave up hope. Children and families from ethnic minority groups or with a learning disability experienced discrimination. Few studies focused on children under 5 years old, children with learning disabilities or experiences of services. Families need a pain management approach tailored to the whole family's needs involving schools, social care and health services. Our findings could improve treatment guidelines, training of health and social care professionals and service design and treatments.

Inter-generational impact: Exploring the influence of older sister-in-law's contraceptive choices on her peer contraception adoption in India.

OBJECTIVE: Social network-based reproductive decisions are critical. This study compares the effect of an older peer contraceptionuse on her younger peer's use, as they share the closest social network within the household, and tend to influence one another for reproductive decisions. In this study we considered peers as two sister-in-law living in the same household. METHODS: We used data from the fifth round of National Family Health Survey which was conducted between the year 2019 and 2021. We deployed multinomial multivariable logistic regression to find the association between older women contraception use on her younger peer. Also, an attempt has been made to determine contraceptive clustering within households in India and select states. RESULTS: The multinomial analysis found that all the women in the household used the similar method, but still relied only on the female sterilization as the sole method for their family planning. The multinomial multivariable method found that younger peers were 3.42 time odds more likely to use permanent method if her older peer had used it previously. Also, it was found 11% increase in any modern contraception use of younger peer if all her older peer will use any modern contraceptives in India. For all the states, the contraception clustering within household ranged from 5% to 14%, with highest in Himachal (14%). CONCLUSION: Empowering older women as peer educators in contraception workshops can foster informed discussions, dispel myths, and promote the use of modern contraceptive methods among younger peers. Integrating such initiatives into government existing policies like Mission Parivar Vikas is crucial for improving contraceptive uptake, with ASHA workers and community health volunteers playing a pivotal role in delivering targeted education within households.

Rural veteran perception of healthcare access in South Carolina and Florida: a qualitative study.

BACKGROUND: Access to mental and physical healthcare in rural areas is challenging for Veterans and their families but essential for good health. Even though recent research has revealed some of the challenges rural Veterans face accessing healthcare, a complete understanding of the gap in access is still unclear. METHODS: This qualitative study aimed to explore participants' perceptions of healthcare access. Structured interviews were conducted with 124 Veterans and spouses of Veterans from rural qualifying counties in South Carolina and Florida. RESULTS: The study's results revealed five main dimensions of access: geographic proximity, transportation, communication, cultural competence, and resources. Distance to service needed can negatively impact access for Veterans and their families in general, especially for those whose health is declining or who cannot drive because of their age. Lack of transportation, problems with transportation services, and lack of public transportation can lead to delays in care. Additionally, the lack of communication with the Veterans Affairs (VA) Health System and with the healthcare team, as well as inefficient communication among the healthcare team, lack of coordination of care between the VA health system and community providers, and the lack of cultural competence of healthcare providers and contracted personnel made access to services even more challenging. CONCLUSIONS: Improving communication can help to develop a sense of trust between Veterans and the VA, and between Veterans and spouses with the healthcare team. It can also lead to increased patient satisfaction. Ensuring healthcare providers and contracted personnel are culturally competent to talk and treat Veterans can improve patient trust and adherence to treatment. Lastly, resource-related challenges included financial problems, lack of prompt access to appointments, lack of providers, limited access to local clinics and hospitals, limited local programs available, and reimbursement issues.

Novel splicing variant and gonadal mosaicism in DYRK1A gene identified by whole-genome sequencing in multiplex autism spectrum disorder families.

Autism spectrum disorder (ASD) is a complex neurodevelopmental condition with considerable genetic heterogeneity. The disorder is clinically diagnosed based on DSM-5 criteria, featuring deficits in social communication and interaction, along with restricted and repetitive behaviours. Here, we performed whole-genome sequencing (WGS) on four individuals with ASD from two multiplex families (MPX), where more than one individual is affected, to identify potential single nucleotide variants (SNVs) and structural variants (SVs) in coding and non-coding regions. A rigorous bioinformatics pipeline was employed for variant detection, followed by segregation analysis. Our investigation revealed an unreported splicing variant in the DYRK1A gene (c.-77 + 2T > C; IVS1 + 2T > C; NM_001396.5), in heterozygote form in two affected children in one of the families (family B), which was absent in the healthy parents and siblings. This finding suggests the presence of gonadal mosaicism in one of the parents, representing the first documented instance of such inheritance for a variant in the DYRK1A gene associated with ASD. Furthermore, we identified a 50 bp deletion in intron 9 of the DLG2 gene in two affected patients from the same family, confirmed by PCR and Sanger sequencing. In Family A, we identified potential candidate variants associated with ASD shared by the two patients. These findings enhance our understanding of the genetic landscape of ASD, particularly in MPX families, and highlight the utility of WGS in uncovering novel genetic contributions to neurodevelopmental disorders.

Coparenting Profiles and Children's Socioemotional Outcomes in Unmarried Parents with Low-Income.

Objective: This study aimed to examine patterns of mother-father coparenting relationship quality and their associations with child empathy, emotional insecurity, and behavior problems in families with low income. Background: Given the growing number of nonmarital births and the high risk of relationship dissolution among cohabiting couples living with low income, it is important to examine the coparenting relationships among racially diverse unmarried couples from low-income contexts. To date, little research has assessed patterns of coparenting relationships and their associations with child socioemotional outcomes among this population. Method: Participants were 4,266 unmarried couples and their preschool-aged children from the Building Strong Families study. Latent profile analysis was conducted. Results: Latent profile analysis of survey data from mothers and fathers revealed four coparenting patterns: Profile 1: low quality, more negative maternal coparenting perceptions (7.2%); Profile 2: moderate-high quality, high congruence, slightly more negative paternal coparenting perceptions (25.2%); Profile 3: low congruence, severely more negative maternal coparenting perceptions (11.8%); and Profile 4: mutual high-quality coparenting (55.8%). Conclusion: Children of parents with the mutual high-quality coparenting profile had the most positive outcomes according to maternal reports of child socioemotional development. Highly congruent and positive perceptions of the other parent as a coparent were found to be significant promotive factors for positive child socioemotional development. Implications: Family strengthening policies and programs for unmarried couples with low income should target and support the development of mutually satisfying, high-quality coparenting relationships, with the ultimate goal to improve developmental outcomes for young children in such families.

Genital Modifications in Prepubescent Minors: When May Clinicians Ethically Proceed?

When is it ethically permissible for clinicians to surgically intervene into the genitals of a legal minor? We distinguish between voluntary and nonvoluntary procedures and focus on nonvoluntary procedures, specifically in prepubescent minors ("children"). We do not address procedures in adolescence or adulthood. With respect to children categorized as female at birth who have no apparent differences of sex development (i.e., non-intersex or "endosex" females) there is a near-universal ethical consensus in the Global North. This consensus holds that clinicians may not perform any nonvoluntary genital cutting or surgery, from "cosmetic" labiaplasty to medicalized ritual "pricking" of the vulva, insofar as the procedure is not strictly necessary to protect the child's physical health. All other motivations, including possible psychosocial, cultural, subjective-aesthetic, or prophylactic benefits as judged by doctors or parents, are seen as categorically inappropriate grounds for a clinician to proceed with a nonvoluntary genital procedure in this population. We argue that the main ethical reasons capable of supporting this consensus turn not on empirically contestable benefit-risk calculations, but on a fundamental concern to respect the child's privacy, bodily integrity, developing sexual boundaries, and (future) genital autonomy. We show that these ethical reasons are sound. However, as we argue, they do not only apply to endosex female children, but rather to all children regardless of sex characteristics, including those with intersex traits and endosex males. We conclude, therefore, that as a matter of justice, inclusivity, and gender equality in medical-ethical policy (we do not take a position as to criminal law), clinicians should not be permitted to perform any nonvoluntary genital cutting or surgery in prepubescent minors, irrespective of the latter's sex traits or gender assignment, unless urgently necessary to protect their physical health. By contrast, we suggest that voluntary surgeries in older individuals might, under certain conditions, permissibly be performed for a wider range of reasons, including reasons of self-identity or psychosocial well-being, in keeping with the circumstances, values, and explicit needs and preferences of the persons so concerned. Note: Because our position is tied to clinicians' widely accepted role-specific duties as medical practitioners within regulated healthcare systems, we do not consider genital procedures performed outside of a healthcare context (e.g., for religious reasons) or by persons other than licensed healthcare providers working in their professional capacity.

Rare variation in non-coding regions with evolutionary signatures contributes to autism spectrum disorder risk.

Little is known about the role of non-coding regions in the etiology of autism spectrum disorder (ASD). We examined three classes of non-coding regions: human accelerated regions (HARs), which show signatures of positive selection in humans; experimentally validated neural VISTA enhancers (VEs); and conserved regions predicted to act as neural enhancers (CNEs). Targeted and whole-genome analysis of >16,600 samples and >4,900 ASD probands revealed that likely recessive, rare, inherited variants in HARs, VEs, and CNEs substantially contribute to ASD risk in probands whose parents share ancestry, which enriches for recessive contributions, but modestly contribute, if at all, in simplex family structures. We identified multiple patient variants in HARs near IL1RAPL1 and in VEs near OTX1 and SIM1 and showed that they change enhancer activity. Our results implicate both human-evolved and evolutionarily conserved non-coding regions in ASD risk and suggest potential mechanisms of how regulatory changes can modulate social behavior.

Design of Digital Mental Health Platforms for Family Member Cocompletion: Scoping Review.

BACKGROUND: The COVID-19 pandemic placed an additional mental health burden on individuals and families, resulting in widespread service access problems. Digital mental health interventions suggest promise for improved accessibility. Recent reviews have shown emerging evidence for individual use and early evidence for multiusers. However, attrition rates remain high for digital mental health interventions, and additional complexities exist when engaging multiple family members together. OBJECTIVE: As such, this scoping review aims to detail the reported evidence for digital mental health interventions designed for family use with a focus on the build and design characteristics that promote accessibility and engagement and enable cocompletion by families. METHODS: A systematic literature search of MEDLINE, Embase, PsycINFO, Web of Science, and CINAHL databases was conducted for articles published in the English language from January 2002 to March 2024. Eligible records included empirical studies of digital platforms containing some elements designed for cocompletion by related people as well as some components intended to be completed without therapist engagement. Platforms were included in cases in which clinical evidence had been documented. RESULTS: Of the 9527 papers reviewed, 85 (0.89%) met the eligibility criteria. A total of 24 unique platforms designed for co-use by related parties were identified. Relationships between participants included couples, parent-child dyads, family caregiver-care recipient dyads, and families. Common platform features included the delivery of content via structured interventions with no to minimal tailoring or personalization offered. Some interventions provided live contact with therapists. User engagement indicators and findings varied and included user experience, satisfaction, completion rates, and feasibility. Our findings are more remarkable for what was absent in the literature than what was present. Contrary to expectations, few studies reported any design and build characteristics that enabled coparticipation. No studies reported on platform features for enabling cocompletion or considerations for ensuring individual privacy and safety. None examined platform build or design characteristics as moderators of intervention effect, and none offered a formative evaluation of the platform itself. CONCLUSIONS: In this early era of digital mental health platform design, this novel review demonstrates a striking absence of information about design elements associated with the successful engagement of multiple related users in any aspect of a therapeutic process. There remains a large gap in the literature detailing and evaluating platform design, highlighting a significant opportunity for future cross-disciplinary research. This review details the incentive for undertaking such research; suggests design considerations when building digital mental health platforms for use by families; and offers recommendations for future development, including platform co-design and formative evaluation.

Research with and Inclusive of Children in Immigrant Families: A Narrative Review of Methods and Approaches.

One in four children in the US grow up in immigrant families, and 55% of children in immigrant families have a parent who speaks and understands English less than "very well". While the number of research studies that is focused on children in immigrant families (CIF) has increased, CIF particularly those that communicate in a language other than English (LOE) are frequently excluded from research. We reviewed studies including "children in immigrant families and the United States" in PubMed from 2017-2023, and categorized them as qualitative, quantitative, mixed-methods or community engaged research. We review observations and offer recommendations for research to promote the health and well-being of children in immigrant families including: using strengths-based frameworks; prioritizing the inclusion of families who speak languages other than English; amending reporting standards for qualitative studies to include guidance on reporting methods for projects in which research teams and study participants speak different languages from one another; and incorporating methods to identify people who have experienced migration in large national surveys and cohort studies. We recommend research with and inclusive of CIF to consider additional areas for growth in cross-sector collaborations, interventions and clinical trials, and training and support for investigators.