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The Child's Voice in Paediatric Oncology: An Interpretative Phenomenological Analysis of the Child's Lived Experience of Parenting in Hospital‐At‐Home

ABSTRACT

Background

Hospital-at-home (HaH) is becoming more widely available to children with cancer, providing care in a familiar environment while upholding medical safety and quality. Little is known, however, about how these children experience their parents' caregiving in the context of HaH, how they perceive and interpret parental roles, what they require in daily care, and how they communicate these needs.

Methods

Seven children aged 7 to 12 years undergoing home-based cancer treatment were interviewed using interpretative phenomenological analysis (IPA). These interviews, conducted via telephone, were open-ended and exploratory, allowing the children to express their experiences freely.

Results

One major theme—‘the child's voice’—emerged, encompassing two interrelated sub-themes: (1) parental presence as a condition of care; and (2) the strategies children use to express their voice. Parental presence was described as essential for emotional security, predictability and meaning, serving as both a psychological anchor and a temporal organiser in the child's daily life. The children expressed their voice through multiple forms—verbal, gestural, symptom-focused or silent—revealing their active participation in care and their capacity to preserve relational and emotional continuity within the family setting.

Conclusions

Children with cancer perceive HaH as more than a transfer of hospital treatment; they experience it as a shared relational experience built on parental presence and mutual understanding. Recognising and supporting the child's voice in its various forms is vital for ensuring that HaH becomes not only a site for medical care but also a meaningful space for living.

Relevance to Clinical Practice

Our findings highlight the need for healthcare teams to take into account the variety of children's voices and grant them a real place in HaH. They are not simply recipients of care, but also active participants in the care relationship, capable of expressing their needs, emotions, and expectations in their own way.

Patient or Public Contribution

No patient or public contribution.

Identification of immunomodulators associated with atrial fibrillation reporting to better understand AF immunologic mechanisms: a Vigibase retrospective disproportionality analysis and a literature review

Por: Font · J. · Dolladille · C. · Divoux · J. · Chretien · B. · de Boysson · H. · Legallois · D. · Ollitrault · P. · Champ-Rigot · L. · Ferchaud · V. · Pellissier · A. · Milliez · P. · Alexandre · J.
Objectives

Growing evidence exists about the pivotal role of immune mechanisms in the physiopathology of atrial fibrillation (AF). Drugs that modulate the immune system (immunomodulators) may contribute to the development of AF. We aimed to identify immunomodulators that are associated with AF to better define their safety profile, and elucidating their mechanisms of action could yield novel insights into AF’s immune physiopathology.

Design

A descriptive and disproportionality analysis of claims data.

Settings

World pharmacovigilance database VigiBase until 1 March 2025.

Primary and secondary ouctomes

First, we ascertained the association of immunomodulators with AF over-reporting with a disproportionality analysis evaluating the multivariable-adjusted reporting odds ratio (aROR) for AF reporting performed for 141 immunomodulators in VigiBase. Then, a literature review was done to explore the underlying mechanisms of AF through immunomodulator mechanisms.

Results

A total of 6 148 556 reports encompassing at least one of the 141 immunomodulators were identified in Vigibase. Our primary analysis revealed 20 immunomodulators associated with AF over-reporting. The three immunomodulators with the greatest signal were: recombinant interleukin-11 with an aROR=20.91 (99.96% CI 12.08 to 36.17), efgartigimod alfa with an aROR=6.75 (99.96% CI 3.96 to 11.52) and recombinant interleukin-2 with an aROR=6.15 (99.96% CI 3.62 to 10.45). A derivative literature review posited a hypothetical immune ‘vicious circle’ promoting AF, involving T helper cells, macrophages and natural killer cells which could lead to electrophysiologic and histologic atrial remodelling.

Conclusions

Twenty Food and Drug Administration (FDA)-labelled immunomodulators are associated with AF overreporting in Vigibase with a substantial signal on recombinant IL-11. These data contribute substantively to the prevailing understanding of the safety profile of these immunomodulators. Moreover, these findings support a multidirectional interaction between the immune system and AF development and might lead to considering future therapeutic targets.

Trial registration number

NCT06095791.

Association between exposure to proton pump inhibitors and hypertension: a descriptive and disproportionality analysis of VigiBase

Por: Chretien · B. · Cacquevel · M. · Kazuki · N. · Guerin · C. · Dolladille · C. · Alexandre · J. · Humbert · X.
Objectives

The potential link between proton pump inhibitors (PPIs) and hypertension remains unclear. It is uncertain whether such an association exists, whether it represents a class-of-PPI effect and whether a dose–response relationship is involved. This study aimed to investigate the potential class-of-PPI effect associating PPIs with hypertension reporting and evaluate whether the association follows a dose-dependent pattern.

Design

A disproportionality analysis was conducted within VigiBase to identify signals of hypertension reporting associated with individual PPIs by calculating adjusted reporting ORs (aRORs) within a multivariate case/non-case study design. Additionally, the presence of a dose–response relationship was explored.

Setting

Real-world data from VigiBase, the WHO pharmacovigilance database, was used.

Participants

All individual case safety reports with PPI use were included.

Outcome measures

Incident hypertension cases were identified using the Medical Dictionary for Regulatory Activities V.26.1 related to at least one PPI administration that were systematically collected until 28 October 2024. Pharmacovigilance signals between the use of PPIs and hypertension reported and dose dependence between PPI posology and onset or worsening hypertension were analysed.

Results

The database contained 26 587 reports of PPI-associated hypertension (2.3%), predominantly among women (63.3%). Hypertension was most frequently reported in the group aged 45–64 years (41.4%). A significant reporting OR (ROR) was observed for almost all PPIs in both univariable (RORs, 1.32–1.97) and multivariate analyses (aRORs, 1.09–1.35) after adjustments for age group, sex, concurrent antihypertensive medication and drugs known to induce hypertension, with the exception of lansoprazole (aROR 0.99, 95% CI 0.96 to 1.03). A potential trend suggestive of a dose–response relationship was identified, with doses lower than the median associated with a lower aROR for hypertension than doses higher than the median for all PPIs. However, this trend was not statistically significant, potentially due to insufficient statistical power.

Conclusions

This investigation indicates a notable pharmacovigilance safety signal associating PPI usage with hypertension reporting. Although a potential dose–response trend was observed, it was not statistically significant, possibly due to limited statistical power. Further longitudinal studies are warranted.

Effectiveness and appropriateness of interventions to enhance the quality of life of informal caregivers of patients receiving home-based palliative care: a mixed-methods systematic review protocol

Por: Umubyeyi · B. · Allard · E. · De Almeida Mello · J. · Chretien · S. · Vedel · I. · Bagaragaza · E.
Introduction

Informal caregivers play a vital role in caring for individuals who choose to spend the end of their life at home. However, this caregiving role often imposes considerable physical, emotional, social and financial burdens that can negatively impact caregivers’ quality of life. A comprehensive understanding of the breadth of interventions designed to support caregivers of individuals receiving home-based palliative and end-of-life care is essential, along with insights into how these interventions are perceived by those who have received them. The objective of this review is to synthesise existing evidence on the effectiveness and appropriateness of interventions that support informal caregivers of patients receiving home-based palliative care in order to address the caregivers’ needs and improve their quality of life. Additionally, this review aims to explore the acceptability and perceived benefits of these interventions from the perspectives of informal caregivers who have received them.

Methods and analysis

A comprehensive search will be performed in the following databases: MEDLINE (PubMed), CINAHL, PsycINFO, Web of Science, Scopus, Cairn.info, EMBASE and the Cochrane Central Register of Controlled Trials (CENTRAL). This review will include studies that focus on adult informal caregivers of adult patients with serious life-threatening illnesses receiving home-based palliative care. Interventional studies that employed quantitative, qualitative and mixed-methods approaches will be considered. Quantitative studies will include randomised controlled trials (RCTs) and experimental and quasi-experimental designs. Qualitative studies will encompass research that explores informal caregivers’ experiences with the interventions, perceived benefits and barriers and enablers influencing intervention effectiveness. Mixed-methods studies using convergent, embedded or sequential designs will also be included.

The search will include studies published in English or French, with no restrictions on the publication period. Study selection, critical appraisal and data extraction will be conducted independently by two reviewers to ensure methodological rigour. This review will adhere to the Joanna Briggs Institute guidelines for mixed-methods systematic reviews, using a convergent segregated approach. Findings will be reported in accordance with the Preferred Reporting Items for Systematic Review and Meta-Analyses guidelines.

Ethics and dissemination

Ethical review is not required for this study, as it is a literature review that does not involve the collection of primary data. The findings of this review will be disseminated to the scientific community through conference presentations and peer-reviewed publications. Additionally, lay summaries will be prepared and shared with the general public and relevant stakeholders.

Trial Registration Number

PROSPERO, registration number CRD420251006612.

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