Children's subjective experience of growing up with a somatically ill parent was studied by a qualitative analysis of individual interviews with children having a parent on hemodialysis. Transcripts of semi-structured interviews with 8 children and adolescents between 6 and 17 years and with one ill mother, whose father had had the same disease, were evaluated through structuring content analysis and psychoanalytical text interpretation. All individuals showed a strong sense of responsibility for their parents. In some cases this conflicted with their strives for autonomy. Almost all children tried to avoid conflicts with their parents. Younger children suffered from diffuse sadness, whereas children up from 11 years had concrete fears of medical complications or their parents' possible decease. In case parents spoke frankly about their illness, children felt relieved. Results suggest that growing-up with a chronically ill parent means a sustaining experience for a child, which requires enormous efforts of psychological adaptation. In preventive counselling concepts, parents should be strengthened in their competence as emotionally available attachment figures.
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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 PDFJMIR Form Res
January 2025
Department of Design Innovation, College of Design, University of Minnesota, Twin Cities, Minneapolis, MN, United States.
Background: Congenital heart disease (CHD) is a birth defect of the heart that requires long-term care and often leads to additional health complications. Effective educational strategies are essential for improving health literacy and care outcomes. Despite affecting around 40,000 children annually in the United States, there is a gap in understanding children's health literacy, parental educational burdens, and the efficiency of health care providers in delivering education.
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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).
Effective communication is crucial in pediatric palliative care and is essential to facilitate shared decision making between families and the health care team. This study explored the communication preferences of caregivers and health care specialists in Central-Eastern Europe, a region with unique cultural and health care dynamics. Through qualitative interviews, key communication style preferences and barriers were identified.
View Article and Find Full Text PDFRev Esc Enferm USP
January 2025
Universidade Estadual de Campinas, Faculdade de Enfermagem, Campinas, SP, Brazil.
Objective: To understand the experience of children with special health needs at school.
Method: Qualitative research using Symbolic Interactionism as a theoretical framework and assumptions of Grounded Theory as a methodological framework. Data collected in a pediatric outpatient clinic of a teaching hospital in an inland city of the state of São Paulo.
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