Parental decision

Breast cancer is the most prevalent malignancy among adolescents and young adults (AYAs). Despite the efficacy of chemotherapy, AYA patients contend with psychosocial challenges, including psychological distress and financial toxicity, exacerbated further by those with dependent children. Parenting responsibilities intersect with cancer care, impacting both family dynamics and treatment adherence. Despite recognized needs, however, the impact of parenting concerns or even parenting status and the presence of dependents has not been systematically addressed and there is a paucity of interventional research regarding patients with cancer as concomitant caregivers...

BACKGROUND: Vaccine hesitancy among parents directly affects the child's vaccination status since they are the legal decision-makers regarding vaccinating their children. The study aimed to describe the perceptions of highly educated Kazakhstani mothers about childhood vaccination hesitancy. METHODS: The study utilized a thematic analysis to explore the mothers' perceptions. A sample of 95 participants comprehensively answered the free-text questions in an online questionnaire from January to February 2023...

BACKGROUND: Shared decision making (SDM) is an evidence-based model that involves the collaborative development of a treatment plan. SDM in adolescents with mental health problems is complex. Most mental health problems arise in adolescence and psychotropic drugs are an important part of treatment. Previous research focuses primarily on caregivers’ experience with SDM. AIM: This research has the main objective to gain insight into the adolescents’ experience with shared decision making related to psychotropic drugs...

Developmental delay (DD), or intellectual disability (ID) is a very large group of early onset disorders that affects 1-2% of children worldwide, which have diverse genetic causes that should be identified. Genetic studies can elucidate the pathogenesis underlying DD/ID. In this study, whole-exome sequencing (WES) was performed on 225 Chinese DD/ID children (208 cases were sequenced as proband-parent trio) who were classified into seven phenotype subgroups. The phenotype and genomic data of patients with DD/ID were further retrospectively analyzed...

BACKGROUND: Counselling of pregnancies complicated by pre- and periviable PROM to reach a shared decision-making is challenging and the current, limited evidence hampers the robustness of the information provided. OBJECTIVE: To elucidate the rate of obstetric and neonatal outcomes following expectant management for premature rupture of membranes (PROM) occurred before or at the limit of viability. STUDY DESIGN: Medline, Embase, Cinahl and Web of Science databases were searched electronically up to September 2023...

BACKGROUND: Intermittent exotropia is a common form of pediatric strabismus characterized by intermittent misalignment of the eyes. This study investigated the clinical effectiveness of alternating occlusion therapy as a non-surgical alternative for children aged 3-10 with intermittent exotropia. METHODS: A comprehensive review of recent research, including randomized controlled trials and case series, was conducted. These studies utilized standardized control scores to assess the impact of alternating occlusion therapy on both distance and near control of alignment...

Impulsive decision-making, particularly during states of affective intensity, is associated with greater risk of engagement in self-injurious thoughts and behaviors (SITBs) during adolescence. The proximal (dyadic parent-adolescent affect and impulsivity) and distal (family history of SITBs) risk factors that occur within the family system could be relevant processes at stake in the intergenerational transmission of risk. The current study tests the interdependence of parent-adolescent factors associated with risk for SITBs and probes the extent to which parent-adolescent affective states influence their own (actor-effects) and each other's (partner-effects) impulsive decision-making, and further whether these relationships are moderated by a parent's history of SITBs...

BACKGROUND: Up to 20% of youth have impairing mental health problems as early as age 3. Early identification and intervention of mental health risks in pediatric primary care could mitigate this crisis via prevention prior to disease onset. The purpose of this study was to establish the feasibility and acceptability of implementing a brief transdiagnostic screening instrument in pediatric primary care for irritability and corollary impairment. METHOD: Five pediatric clinicians in a Midwest clinic implemented the Multidimensional Assessment Profiles-Early Assessment Screener of Irritability (MAPS-EASI) for toddlers (24-30 months) and their families...

OBJECTIVE: To establish a haplotype-based noninvasive prenatal testing (NIPT) workflow for single-gene recessive disorders that adapt to dizygotic (DZ) twin pregnancies. METHOD: Twin pregnancies at risk of Duchenne muscular dystrophy, Becker muscular dystrophy, hemophilia B, spinal muscular atrophy, phenylketonuria, and nonsyndromic hearing loss were recruited. For subsequent analysis, capture sequencing targeting highly heterozygotic single nucleotide polymorphism sites was conducted...

Youth decision-making involvement (DMI) in medical treatment associates with greater adherence and feelings of self-efficacy. However, little is known about youth DMI regarding medical evaluation and diagnostic procedures. Using thematic analysis of semi-structured interviews, we explored parent (n=24) and youth (n=24) perceptions of youth roles in the decision to undergo evaluation for short stature. Five themes emerged about evaluation decisions including: parents/providers were gatekeepers, some parents sought youth agreement, conversations focused on logistics, some parents gave limited information, and youth expressed anxiety...

PURPOSE: To explore the perspectives of primary caregivers of children with cerebral palsy (CP) who had spinal surgery for scoliosis. MATERIALS AND METHODS: A qualitative study was conducted using semi-structured interviews and guided by qualitative description methodology. Participants were caregivers of children with CP aged 5-18, who had undergone spinal surgery for scoliosis in Australia. The research team included a parent with lived experience. RESULTS: Fourteen participants (8 biological mothers), aged 40-49 years, completed online semi-structured interviews...

INTRODUCTION: Rare diseases (RDs) collectively impact over 30 million people in Europe. Most individual conditions have a low prevalence which has resulted in a lack of research and expertise in this field, especially regarding genetic newborn screening (gNBS). There is increasing recognition of the importance of incorporating patients' needs and general public perspectives into the shared decision-making process regarding gNBS. This study is part of the Innovative Medicine Initiative project Screen4Care which aims at shortening the diagnostic journey for RDs by accelerating diagnosis for patients living with RDs through gNBS and the use of digital technologies, such as artificial intelligence and machine learning...

UNLABELLED: Although children wish to be included in their own healthcare, they recognize a gap between their right to be heard and their ability to become involved. Despite adaptation of medical consultation styles which suit a more patient-centered approach, data on the current state of child participation in clinical encounters are missing. We aimed to assess actual child participation in a Dutch pediatric clinic. Children aged 4-18 years visiting a pediatric outpatient clinic for consultation after general practitioner's referral were included...

School choice initiatives-which empower parents to choose which schools their children attend-are built on the assumptions that parents know what features of a school are most important to their family and that they are capable of focusing on the most important features when they make their decisions. However, decades of psychological research suggest that decision makers lack metacognitive knowledge of the factors that influence their decisions. We sought to reconcile this discrepancy between the policy assumptions and the psychological research...

The post-secondary transition for autistic youth is a complex process, with hopes and expectations serving as malleable mediators often overlooked in research and practice. Career awareness, exploration, and counseling services play a critical role in facilitating vocational transition, but the vocational hopes and expectations of autistic youth and their parents are often disregarded. This study aims to explore these aspirations and their impact on the vocational transition process, seeking to harmonize elements to better align with the needs of autistic youth and their families...

Background Handoffs between medical providers serve a crucial patient safety function. While most published literature on the topic studies the handover process among physicians, robust literature is available on interdisciplinary medical communication. Little is known about the downstream effects of effective physician handover on subsequent physician and nursing interactions. Objective Our objective was to implement a handoff curriculum, SAFETIPS (Statistics, Assessment, Focused plan, pertinent Exam findings, To dos, If/thens, Pointers/pitfalls, and Severity of illness), for pediatric residents and to investigate its impact on nurses' perceptions of resident preparedness, efficiency, and competency...

BACKGROUND: The decision regarding sex rearing in patients with Disorders of Sex Development (DSD) is heavily connected to the shared decision-making model within multidisciplinary team. Some of these patients might develop gender dysphoria, when they become adults. We have aimed to evaluate the long-term outcomes of patients with XY DSD who underwent female gender assignment at our center. METHODS: We have conducted a retrospective study of all 46, XY DSD patients who underwent female assignment in our institution over the last 30 years...

High-risk strains of Human Papillomavirus (HPV) can lead to the development of a number of cancers including cervical, vulvar, penile, anal and oropharyngeal. HPV vaccination programmes offer the HPV vaccine to males and females 12-13 years old in schools throughout the UK. However, knowledge of HPV remains low in post-primary schools. The aim of this study is to capture 15-16 year old students' perceptions regarding the current provision of HPV education, and whether providing HPV education to 15-16 year olds could influence their intention to be vaccinated and/or future sexual health decisions related to HPV...

PURPOSE: The purpose of this narrative review was to assess the limited literature on fetal anomalies diagnosed in the second trimester of pregnancy and parental decision-making and identify sources of information deemed as facilitators and barriers to medical decisions. METHODS: This was a literature review of source material and information about fetal anomalies diagnosed in the second trimester of pregnancy, decision-making, decision tools or aids, and sources of information for anomalies...

WHAT IS KNOWN ON THE SUBJECT?: New parents who have previously experienced psychosis outside and/or following childbirth have an increased likelihood of experiencing an episode during the postpartum period. The decision to try to conceive can be agonising. Receiving care from a specialist perinatal community mental health team can improve outcomes. WHAT DOES THIS PAPER ADD TO EXISTING KNOWLEDGE?: This article offers a first-person insight into the steps the author took to minimise the impact of an episode of postpartum psychosis and/or postnatal depression whilst navigating new motherhood...