Efficacy of behavioural parent training on attachment security in children with attention deficit hyperactivity disorder: a randomised controlled trial.

Background: Behavioural parent training (BPT) is a psychosocial intervention designed for children with attention deficit hyperactivity disorder (ADHD). BPT programs teach parents to use effective commands or rules whilst encouraging them to pay careful attention to their child's appropriate behaviour. In this study, we will investigate the efficacy of BPT on parental stress, mothers' sense of emotional closeness to their children, and children's attachment security to their mothers.

Educational and occupational aspirations of adolescent and young adult cancer survivors: a qualitative analysis.

Purpose: Adolescent and young adult cancer survivors (AYACS) are patients diagnosed with cancer between 15 and 39 years of age. AYACS are often derailed from planned educational and occupational endeavors due to disruption from cancer treatment and its consequences. The study objective was to examine how a personal cancer diagnosis impacted AYACS' experiences related to these endeavors.

Using Clustering Methods to Map the Experience Profiles of Dementia Caregivers.

Background And Objectives: Caregivers of persons living with dementia report wide-ranging lived experiences, including feelings of burden and frustration but also positivity about caregiving. This study applies clustering methodology to novel survey data to explore variation in caregiving experience profiles, which could then be used to design and target caregiver interventions aimed at improving caregiver well-being.

Research Design And Methods: The -means clustering algorithm partitioned a sample of 81 caregivers from the Midwest region of the United States on the basis of 8 variables capturing caregiver emotions, attitudes, knowledge, and network perceptions (: burden, anxiety, network malfeasance; network nonfeasance; : positive aspects of caregiving, preparedness and confidence in community-based care, knowledge about community services for older adults, and network uplift).

Stress, Coping, and Physical Health in Caregiving.

Informal caregivers experience a great deal of stress due to care-related duties and responsibilities. Caregiving stress has the ability to impact caregivers' physical health, but has been largely understudied in caregivers of children with a chronic illness. In this study, we examine the associations of stress to both caregiver self-rated health and biomarkers of the hypothalamic-pituitary-adrenal (HPA) axis and immune systems (arginine vasopressin, c-reactive protein, tumor necrosis factor alpha).

Interconnected social convoys: Understanding health and well-being through linked personal networks.

The convoy model of social relations describes how social relationships contribute to an individual's health and well-being from a life course and lifespan perspective. In large part, this model focuses on the unique, personal experiences of an individual, without due consideration of the reciprocal and shared relationships among those whose lives are inextricably linked. Here, we extend the convoy model to directly integrate Elder's concept of linked lives by considering the composition, structure, and function of linked personal networks, or social convoys, among close others, and the important implications of these network characteristics on the health of all involved.

Becoming a Rare Disease Parent: An Interpretative Phenomenological Analysis of Parent-Caregivers' Postpartum Experiences.

Rare diseases constitute a group of conditions that are individually rare, but in aggregate impact between 3 and 6% of the world population. Many of these conditions present during infancy and involve substantial caregiving responsibilities, often assessed via quantitative measurements. However, few qualitative analyses examine lived experiences of parent-caregivers during the early period of their child's life.

AYA-UNITE: Lessons Learned on Intervention Development Promoting Social and Physical Health of Adolescent/Young Adult Cancer Survivors.

Adolescent/young adult cancer survivors (AYACS) struggle with poor psychosocial health related to social disruptions due to cancer diagnosis, impacting long-term goal achievement and overall health. In particular, social health promotion is overlooked in AYACS' care. AYA-UNITE, a sociobehavioral exercise intervention pilot for AYACS 15-21 years of age at cancer diagnosis, was designed to foster AYACS' social and physical health.

Shared Responsibility and Network Collaboration in Caregiving.

Communal coping may benefit caregivers, but most communal coping research focuses on dyads. Using an egocentric network design, we examine caregivers' we-talk-a linguistic marker of shared responsibility-and caregiver reports of 1) network member involvement in collaborative care roles and 2) met/unmet expectations across typically developing and rare disease contexts. We-talk was linked to involvement in direct care and support, but links of we-talk to decision-making varied based on network member closeness; we-talk was linked to meeting expectations for decision-making only.

Embryonic statistical analyses reveal 2 growth phenotypes in mouse models of Down syndrome.

Background: Down syndrome is associated with several comorbidities, including intellectual disability, growth restriction, and congenital heart defects. The prevalence of Down syndrome-associated comorbidities is highly variable, and intellectual disability, although fully penetrant, ranges from mild to severe. Understanding the basis of this interindividual variability might identify predictive biomarkers of in utero and postnatal outcomes that could be used as endpoints to test the efficacy of future therapeutic interventions.

A daily diary study into the effects on mental health of COVID-19 pandemic-related behaviors.

Background: Recommendations for promoting mental health during the COVID-19 pandemic include maintaining social contact, through virtual rather than physical contact, moderating substance/alcohol use, and limiting news and media exposure. We seek to understand if these pandemic-related behaviors impact subsequent mental health.

Methods: Daily online survey data were collected on adults during May/June 2020.

Parent-Reported Caregiving Roles of Siblings of Children with Inborn Errors of Metabolism.

Objectives: Research examining sibling caregiving contributions to medically complex pediatric patients, including those with inborn errors of metabolism (IEMs), is limited. We assess caregiving roles and attributes of siblings and hypothesize that there will be differences in parent-reported contributions among siblings of children with IEMs and siblings of typically developing (TD) children.

Study Design: A convergent parallel mixed-methods study design guided analysis of data from parental surveys and semistructured interviews.

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.

The impact of caregiving for children with chronic conditions on the HPA axis: A scoping review.

Caregiving has been robustly linked to caregiver health through the dysregulation of the hypothalamic-pituitary-adrenal (HPA) axis in the context of caregiving for an adult with a chronic illness. However, little research examines the physiological impact of caregiving for a child with a chronic illness despite high burden and unique stressors. In this review, we explore the links of caregiving for a child with a congenital, chromosomal, or genetic disorder to the regulation or dysregulation of the HPA axis.

Addressing diversity and inclusion challenges in global neuro-psychiatric and behavioral genomics research.

Advancements in neuro-psychiatric and behavioral genomics offer significant opportunities for better understanding the human brain, behavior and associated disorders. Such advancements may help us prevent, manage and/or cure complex conditions. The serious challenge confronted by these disciplines however is diversity.

Understanding changes in genetic literacy over time and in genetic research participants.

As genomic and personalized medicine becomes mainstream, assessing and understanding the public's genetic literacy is paramount. Because genetic research drives innovation and involves much of the public, it is equally important to assess its impact on genetic literacy. We designed a survey to assess genetic literacy in three ways (familiarity, knowledge, and skills) and distributed it to two distinct samples: 2,050 members of the general population and 2,023 individuals currently enrolled in a large-scale genetic research study.

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.

Links of we-talk to caregiver social network systems and health.

Caring for a child, particularly one with a rare disease, presents a challenging set of stressors that can impact entire family networks. Given this shared impact, caregivers can engage in communal coping to address the caregiving process, defined as the perception of caregiving as shared and collaborative behaviors to address it. In this study, we examined one common measure of communal coping-first person plural pronouns or "we-talk"-in caregivers of either (a) children with rare or undiagnosed diseases or (b) typically developing children.

Experiences of Families Caring for Children with Newborn Screening-Related Conditions: Implications for the Expansion of Genomics in Population-Based Neonatal Public Health Programs.

With the expansion of newborn screening conditions globally and the increased use of genomic technologies for early detection, there is a need for ethically nuanced policies to guide the future integration of ever-more comprehensive genomics into population-based newborn screening programs. In the current paper, we consider the lived experiences of 169 family caregivers caring for 77 children with NBS-related conditions to identify lessons learned that can inform policy and practice related to population-based newborn screening using genomic technologies. Based on caregiver narratives obtained through in-depth interviews, we identify themes characterizing these families' diagnostic odyssey continuum, which fall within two domains: (1) medical management implications of a child diagnosed with an NBS-related condition and (2) psychological implications of a child diagnosed with an NBS-related condition.

Stress, coping, and positive aspects of caregiving among caregivers of children with rare disease.

Objective: Caregivers of children with rare diseases often consider caregiving to be a rewarding experience, despite high levels of burden. The present study examined associations between caregiver stress and positive aspects of caregiving (PAC); investigated associations between interpersonal coping strategies and PAC; and determined whether coping strategies moderated associations between stressors and PAC.

Design: Survey data came from a study on caregivers across different caregiving conditions, including caregivers of children diagnosed with inherited metabolic conditions ( = 167), undiagnosed diseases ( = 23), and caregivers of typically-developing children ( = 74).

Interpersonal Correlates of Dementia Caregivers' Emotional Support Networks: Considering Family History.

Caregiving networks of individuals with Alzheimer's disease and related dementias (ADRD) are comprised of family and friends directly involved in caregiving activities and those supporting these activities. The purpose of this study was to investigate whether caregiving-related behaviors and interactions (i.e.

Formative Evaluation of the Families SHARE Disease Risk Tool among Low-Income African Americans.

Introduction: Family Health Histories (FHH) have been endorsed by the surgeon general as a powerful yet underutilized tool for identifying individuals at risk for complex chronic diseases such as diabetes, heart disease, and cancer. FHH tools provide a mechanism for increasing communication about disease history and motivating behavior change to reduce disease risk. A critical gap in translation efforts includes a lack of research that adapts and evaluates tools for low-income, minority populations who experience disparities in chronic disease.

Motivating Mexican American adults to share family history with healthcare providers.

Family history of metabolic conditions is a primary factor for clinicians to consider when administering preventive care. Sharing this information with healthcare providers proactively is therefore important to individual health outcomes. This brief report seeks to identify factors associated with sharing family history with healthcare providers in individuals of Mexican heritage.

Social support networks of adults with sickle cell disease.

Sickle cell disease (SCD) can cause both physical and psychological complications, such as severe pain and depression. These effects often necessitate social and caregiving support. Few studies have assessed support networks within the adult SCD population.