Living in a bubble with profound difficulties—parents' experiences of extremely preterm survivors

Acta Paediatrica, Journal Year: 2025, Volume and Issue: unknown

Published: Jan. 10, 2025

Abstract Aim To analyse the challenges faced by parents of extremely preterm infants born before 24 weeks gestation and potential buffering effect perceived resources on family's health continuum. Methods The qualitative data were obtained from 70 gestation, through open‐ended questions in a survey. An inductive content analysis was conducted to identify themes patterns parents' experiences. enhance understanding findings, salutogenic theory incorporated contextualise emerging deficits. Results Parents described neonatal care as exemplary. However, integrated results showed that reported profound difficulties characterised ‘living bubble’ with comprehensive varied access support participation. In addition, had manage child medical complexities encountered significant barriers between levels. Conclusion findings highlight need improve systems address for families children. Enhancing collaboration healthcare providers families, identifying overcoming during care, providing services are crucial. Addressing experienced deficits may mitigate adverse effects family outcomes.

Language: Английский

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Editorial: Psychological implications of preterm birth

Frontiers in Psychology, Journal Year: 2025, Volume and Issue: 16

Published: Feb. 28, 2025

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Language: Английский

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Voices of parents of children with major congenital anomalies admitted to the NICU: initial diagnosis, hospitalization, and discharge home

Journal of Perinatology, Journal Year: 2025, Volume and Issue: unknown

Published: March 5, 2025

Language: Английский

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Delivery methods and outcomes of eHealth programmes in neonatal transitional care for families of preterm or medically complex infants: a scoping review protocol

BMJ Open, Journal Year: 2025, Volume and Issue: 15(3), P. e092282 - e092282

Published: March 1, 2025

Introduction The transition from the neonatal intensive care unit (NICU) to home is a critical period for families with preterm or medically complex infants and often marked by stress, anxiety challenge of managing medical regimens. Virtual programmes such as mobile health applications telehealth interventions have emerged promising tools support during this transition. These aim provide continuous education after discharge. This scoping review will map existing evidence on virtual supporting NICU-to-home identify their delivery methods reported outcomes. Methods analysis protocol outlines methodology, described Arksey O’Malley further improved Levac et al . Preferred Reporting Items Systematic Reviews Meta-Analyses extension Scoping Review be used guiding framework reviews. A comprehensive search conducted in six databases: PubMed, Scopus, Web Science, Embase, CINAHL PsycINFO. Studies included if they (1) focus infants, (2) involve transitional discharge NICU (3) are primary studies. Grey literature, well secondary tertiary literature excluded. Data charted analysed summarise methods, target populations outcomes reported. Ethics dissemination No ethical approval required study. findings disseminated through publications peer-reviewed journals presentations relevant stakeholders. Trial registration number registered Open Science Framework ( https://doi.org/10.17605/OSF.IO/HWVZJ ).

Language: Английский

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Trajectory of parental health-related quality of life after neonatal hospitalization – a prospective cohort study

Health and Quality of Life Outcomes, Journal Year: 2025, Volume and Issue: 23(1)

Published: March 15, 2025

Abstract Background Health-related quality of life is an important measure patient-reported outcomes. There limited evidence on how parental health-related develops after neonatal hospitalization. Objective To evaluate parents’ (HRQL) during the year following their infant’s treatment in intensive care unit (NICU). Methods This prospective cohort study, conducted at a German university hospital between 2020 – 2023, examined HRQL among parents infants hospitalized NICU for ≥ 14 days and discharged from maternity ward according to PedsQL™ Family Impact Module. Multiple linear regression analysis was performed identify associations affiliation differences HRQL. Key secondary outcome parenting sense competence (PSOC). Results Participants included 131 122 unexposed parents. increased over time mothers (58.7 days, 70.8 6 months, 77.0 12 months birth) fathers (69.8 73.9 75.7 months). significantly associated with lower (mothers: -20.26 points; P < .001; fathers: -9.40 = .04), but not or birth. At postpartum, showed higher PSOC compared (mean difference -4.85; 0.005). Conclusions Parents especially reported postpartum. improved, aligning that

Language: Английский

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Mothers` experience with transitions in the process towards neonatal digital homecare

Journal of Neonatal Nursing, Journal Year: 2025, Volume and Issue: 31(3), P. 101663 - 101663

Published: March 31, 2025

Language: Английский

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A Systematic Review of Psycho-Spiritual Interventions in the NICU

Advances in Neonatal Care, Journal Year: 2024, Volume and Issue: 24(2), P. 141 - 150

Published: March 28, 2024

Background: The presence of psychospiritual supports and interventions for neonatal intensive care unit (NICU) parents is unclear. Purpose: This systematic review examines the psychological medical literature designed to support parents’ mental health well-being during or after NICU experience. Data Sources: sources include PubMed, PsycINFO, Cochrane Library (Cochrane Database Systemic Reviews, Central Register Controlled Trials) with peer-reviewed studies published between 2013 2023. Study Selection: Peer-reviewed that included spiritual intervention components focused on supporting were this review. There 42 records located in 3 databases ultimately yielding 4 met inclusion criteria. Articles must have been written English evaluate parents’/caregivers’ health/psychological relation a intervention. Extraction: Because small number studies, article summaries are provided within results section by first author approval second third authors. Results: Results indicated when (focus coping) outcomes better parents. Implications Practice Research: aspects coping supportive necessary best family-centered care. More work needs be done develop fathers these endeavors as most occurs mothers. Nurses need training facilitate focus needs.

Language: Английский

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Neonatal therapy principles during transition from neonatal intensive care unit to home: A modified Delphi study

Developmental Medicine & Child Neurology, Journal Year: 2024, Volume and Issue: unknown

Published: Aug. 26, 2024

Abstract Aim To establish expert consensus on key principles for therapist‐supported interventions supporting infants born preterm and their families during the transition from neonatal intensive care unit (NICU) to home in USA. Method A diverse, interdisciplinary panel of experts evaluated use intervention principles. modified Delphi technique was used seek opinions independent relevant clarity terminology, efficacy, feasibility implementing these NICU‐to‐home transition. Results After our team consensus, one round surveys required reach consensus. Twenty‐four experts, representing a variety disciplines, responded survey. showed strong four interventions: building caregiver–child relationships; optimizing infant development; education knowledge sharing; enriched environments. Interpretation This research provides valuable insights into that may be address needs high‐risk well‐being families. Findings will inform development streamlined effective interventions, improving child family outcomes this critical period.

Language: Английский

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Evaluating the Baby@Home program: Early discharge strategies for (pre)term infants are safe and benefit health outcomes

Acta Paediatrica, Journal Year: 2024, Volume and Issue: 113(8), P. 1803 - 1810

Published: June 4, 2024

Abstract Aim Prolonged hospitalisation in the neonatal intensive care unit (NICU) can emotionally tax newborn infants and their families, resulting developmental adversities inadequate parent–infant bonding. This study aimed to assess feasibility value of Baby@Home program reducing prolonged hospital stays. Methods is a retrospective cohort 26 from tertiary neonatology department, using qualitative data (gathered through interviews with parents ( n = 15) professionals 5)) quantitative (retrieved medical records Luscii application). Results Our included infants. 76% were premature, born at an average term 35 weeks 2 days. During period, all thrived, only two adverse events occurred (an allergic reaction respiratory incident necessitating readmission). Interviews conducted based on six major themes concerning program. Despite challenges application utilisation, program's overall was evident. Conclusion The effectively facilitated early discharge, promoted family reunification, yielded favourable safety health outcomes. Innovative solutions such as have potential pave way for more sustainable patient‐centred models.

Language: Английский

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Yenidoğan Yoğun Bakım Ünitesinden Taburcu Olan Preterm Yenidoğanların Ebeveynlerinin Eve Geçiş Sürecinde Yaşadıkları Güçlükler ile Kaygı Düzeyi Arasındaki İlişki

Sağlık Bilimleri Üniversitesi Hemşirelik Dergisi, Journal Year: 2024, Volume and Issue: 6(2), P. 133 - 140

Published: June 6, 2024

Giriş: Preterm bebeği yenidoğan yoğun bakım ünitesinden taburcu olan ebeveynler için eve geçiş süreci, evde ile ilişkili zorlukların yaşanabildiği önemli bir dönemdir. Amaç: Bu çalışmanın amacı, preterm yenidoğanların ebeveynlerinin sürecinde yaşadıkları güçlükler kaygı düzeyi arasındaki ilişkinin incelenmesidir. Yöntem: araştırma kesitsel tiptedir. Araştırmanın örneklemini Mersin Şehir Hastanesi Yenidoğan Yoğun Bakım Ünitesi’nden prematüre bebeklerin 103 ebeveyni oluşturmaktadır. Araştırma verileri Haziran - Ekim 2023 tarihinde toplanmıştır. Verilerin toplanmasında Tanıtıcı Bilgi Formu, Eve geçiş: Ebeveyn Ölçeği ve Durumluk Anksiyete ölçeği kullanılmıştır. Kruskall Wallis Mann Whitney U testi Pearson Korelasyon analizi değerlendirilmiştir. Bulgular: Ebeveynlerin toplam puan ortalaması 53,06 ± 9,11; 47,46 12,62’dir. Ölçekler arasında negatif yönde yüksek düzeyde ilişki olduğu belirlenmiştir (r = -0,743; p < 0,005). daha önce ölen çocuğunun olması (p 0,004) istatistiksel olarak anlamlı fark saptanmıştır 0,041). Sonuç: Çalışmanın sonucunda, düşük ebeveynlerin yetersizlik yaşadığı belirlenmiştir. Ebeveynlere bebek bakımı stresle baş etmeye yönelik planlı taburculuk eğitimlerinin verilmesi önerilmektedir.

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