This article describes the experiences and perceived needs of a small cohort of parents of children with holoprosencephaly (HPE). The factors that are important to the lives of children vary across families and stages of development. As children living with HPE grow and change, parents adapt their goals and expectations to reflect their child's now and future state. Relevant literature is integrated within the discussion to support recommendations for care.
Download full-text PDF |
Source |
|---|---|
| http://dx.doi.org/10.1002/ajmg.c.30237 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Exploring the Use of Smartwatches and Activity Trackers for Health-Related Purposes for Children Aged 5 to 11 years: Systematic Review.
J Med Internet Res
January 2025
University of Bristol, Bristol, United Kingdom.
Background: Digital health interventions targeting behavior change are promising in adults and adolescents; however, less attention has been given to younger children. The proliferation of wearables, such as smartwatches and activity trackers, that support the collection of and reflection on personal health data highlights an opportunity to consider novel approaches to supporting health in young children (aged 5-11 y).
Objective: This review aims to investigate how smartwatches and activity trackers have been used across child health interventions (for children aged 5-11 y) for different health areas, specifically to identify the population characteristics of those being targeted, describe the characteristics of the devices being used, and report the feasibility and acceptability of these devices for health-related applications with children.
Perspectives on Swedish Regulations for Online Record Access Among Adolescents With Serious Health Issues and Their Parents: Mixed Methods Study.
JMIR Pediatr Parent
January 2025
Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden.
Background: With the increasing implementation of patient online record access (ORA), various approaches to access to minors' electronic health records have been adopted globally. In Sweden, the current regulatory framework restricts ORA for minors and their guardians when the minor is aged between 13 and 15 years. Families of adolescents with complex health care needs often desire health information to manage their child's care and involve them in their care.
View Article and Find Full Text PDFDesigning the First Pregnancy Guaranteed Income Program in the United States: Qualitative Needs Assessment and Human-Centered Design to Develop the Abundant Birth Project.
JMIR Form Res
January 2025
Sexual Health and Reproductive Equity Program, School of Social Welfare, University of California, Berkeley, Berkeley, CA, United States.
Background: Racial inequities in pregnancy outcomes persist despite investments in clinical, educational, and behavioral interventions, indicating that a new approach is needed to address the root causes of health disparities. Guaranteed income during pregnancy has the potential to narrow racial health inequities for birthing people and infants by alleviating financial stress.
Objective: We describe community-driven formative research to design the first pregnancy-guaranteed income program in the United States-the Abundant Birth Project (ABP).
Mapping the relationships among bullying, cyberbullying, child maltreatment, and parental intimate partner violence: A network analysis.
Psychol Trauma
January 2025
Department of Applied Social Sciences, Hong Kong Polytechnic University.
Objective: This study investigates the connections among various forms of violence experienced by adolescents, both online and offline, including bullying, cyberbullying, child maltreatment, and witnessing parental intimate partner violence (IPV). The aim was to elucidate the patterns of these adversities to enhance understanding from a child-centered perspective.
Method: We conducted an online survey with a sample of 934 parents ( = 41.
A Qualitative Analysis of Unintentional Injuries in Autism Spectrum Disorder.
J Autism Dev Disord
January 2025
Department of Psychology, University of Alabama at Birmingham, AL, Birmingham, USA.
Purpose: Prior research demonstrates that children with autism are more likely to experience unintentional injuries than the general population. Limited research exists on the symptoms or traits directly related to autism and this elevated injury rate, especially from the perspective of families with children with autism. This study used qualitative methodology to elucidate risk factors that may contribute to unintentional injuries in children with autism from the perspective of mothers raising children with autism.
View Article and Find Full Text PDFWant AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!