Longer-term experiences of families of children with dextro-transposition of the great arteries: a qualitative study.

Background: Explore longer-term psychosocial adaptation to congenital heart disease among families of children with dextro-Transposition of the Great Arteries (d-TGA).

Methods: In this qualitative study, semi-structured interviews were conducted for 16 families (16 mothers, 12 fathers, 9 siblings) and analyzed using an inductive thematic approach.

Results: Key qualitative themes included parents reflecting "back then" when 1) navigating hospital and healthcare experiences, 2) challenges to psychosocial wellbeing and family functioning, and 3) coping and support needs were greatest.

Characterizing neurodevelopmental follow-up attendance of children with congenital heart disease.

Background: Characterize attendance at neurodevelopmental follow-up for congenital heart disease (CHD) from infancy to young adulthood, as well as identify individual, family, and neighborhood-level correlates of low attendance.

Methods: Primary caregivers (N = 578) of children with CHD aged 0-21 years in the United States, stratified into six age groups, reported whether their child had attended neurodevelopmental follow-up at various time points. Caregiver reports were also used to collect information on the child's clinical and family psychosocial characteristics.

Evaluating multidimensional facets of the maternal experience after preterm birth.

Objective: Describe self-relating (self-criticism, self-compassion) and parenting competence (satisfaction, self-efficacy) in mothers of children born preterm, and their associations with child characteristics, maternal sociodemographics at childbirth, and maternal concurrent well-being.

Study Design: The sample comprised 1926 biological mothers of 3- to18-year-old children born preterm with self-ratings on the standardized Forms of Self-Criticising/Attacking & Self-Reassuring Scale, Self-Compassion Scale, and Parenting Sense of Competence Scale.

Results: Mothers of children in early childhood reported significantly (p < 0.

Within- and between-twin comparisons of risk for childhood behavioral difficulties after preterm birth.

Background: Preterm birth and multiple gestation are independently associated with adverse neurodevelopmental outcomes. The objective of this study was to describe risks of screening positive for attention-deficit/hyperactivity disorder (ADHD), autism spectrum disorder (ASD), and anxiety in preterm-born twin children by zygosity (monozygotic, dizygotic) and birth order (first-born, second-born).

Methods: Caregivers of 349 preterm-born twin pairs (42% monozygotic) aged 3-18 years reported child behavioral outcomes on Strengths and Weaknesses of ADHD Symptoms and Normal Behavior; Social Responsiveness Scale, Second Edition; and Preschool Anxiety Scale or Screen for Child Anxiety and Related Emotional Disorders.

Beyond Survival: Challenges and Opportunities to Improve Neurodevelopmental Outcomes of Preterm Birth in Low- and Middle-Income Countries.

Low- and middle-income countries account for the greatest burden of preterm birth globally; however, there is limited understanding of neurodevelopmental outcomes of survivors within these resource-constrained settings. To accelerate progress, current priorities are to generate more high-quality data; engage with diverse local stakeholders including families of infants born preterm to identify neurodevelopmental outcomes meaningful to them within their contexts; and develop sustainable, scalable, high-quality models of neonatal follow-up, codesigned with local stakeholders, addressing the unique needs of low- and middle-income countries. Advocacy is critical to recognize optimal neurodevelopment as an "outcome of priority" along with the reduction in mortality.