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Liver cirrhosis represents a considerable health burden and causes 1.2 million deaths annually. Patients with decompensated liver cirrhosis have a poor prognosis and severely reduced health-related quality of life. Nurse-led outpatient care has proven safe and feasible for several chronic diseases and engaging nurses in the outpatient care of patients with liver cirrhosis has been recommended. At the decompensated stage, the treatment and nursing care are directed at specific complications, educational support, and guidance concerning preventive measures and signs of decompensation. This review aimed to assess the effects of nurse-assisted follow-up after admission with decompensation in patients with liver cirrhosis from all causes. A systematic search was conducted through February 2022. Studies were eligible for inclusion if i) they assessed adult patients diagnosed with liver cirrhosis that had been admitted with one or more complications to liver cirrhosis and ii) if nurse-assisted follow-up, including nurse-assisted multidisciplinary interventions, was described in the manuscript. Randomized clinical trials were prioritized, but controlled trials and prospective cohort studies with the intervention were also included. Primary outcomes were mortality and readmission, but secondary subjective outcomes were also assessed. We included eleven controlled studies and five prospective studies with a historical control group comprising 1224 participants. Overall, the studies were of moderate to low quality, and heterogeneity across studies was substantial. In a descriptive summary, the 16 studies were divided into three main types of interventions: educational interventions, case management, and standardized hospital follow-up. We saw a significant improvement across all types of studies on several parameters, but currently, no data support a specific type of nurse-assisted, post-discharge intervention. Controlled trials with a predefined intervention evaluating clinically- and practice-relevant endpoints in a real-life, patient-oriented setting are highly warranted.

To evaluate a family-focused intervention for patients with atrial fibrillation (AF) in addition to conventional care and to establish its effect on health-related quality of life (HRQoL), anxiety, depression, AF symptoms, and family support. AF is a widespread heart disease affecting the well-being of patients and their family members physically and psychologically. Supporting patients and their family members could potentially facilitate regaining family strength and improve HRQoL. Patients with newly diagnosed AF were randomised to standard care or additional family-focused intervention with change in global score of the Atrial Fibrillation Quality of Life Questionnaire (AFEQT) as primary outcome after six months' follow-up. Secondary outcomes included the Hospital Anxiety and Depression Score, the European Heart Rhythm Association score, the Ice Expressive Family Functioning Questionnaire, and the Ice Family-Perceived Support Questionnaire (ICE-FPSQ). Sixty-eight patients received standard care (n = 35) or family focused intervention (n = 33). The median change at the six-month follow-up on the global AFEQT score was 4.17 (-1.46-9.17) in the control group and 5.83 (-2.5-30) in the intervention group, yielding a median difference of -1.67 (p = 0.500). Change in ICE-FPSQ showed significant positive scores in favour of intervention (p < 0.001); other secondary outcome changes were non-significant. The family-focused intervention had a small positive but non-significant effect on HRQoL compared to standard care. To address the impact of AF on the patients and family members seems to improve anxiety and depression scores and perceived family support.

ObjectiveTo investigate the context of separations among mother, father and infant after childbirth, with a focus on the psychological, social and physical implications of these separations.DesignA short-term ethnographic study, which included participant observations and informal interviews. Data were analysed by a partly deductive content analysis inspired by Graneheim and Lundman.SettingA ‘27-bed’ Danish neonatal intensive care unit.ParticipantsThe study included parents (n=19) who had an infant in need of intensive care and were separated after childbirth.FindingsThe study identified an overarching theme of navigating family dynamics, caregiving and emotional challenges during separation. Three interconnected subthemes—Physical and virtual bonding as a necessity, Nurturing and caregiving shifts and Collective emotional impact of separation—shed light on the disjointed and emotional nature of parent-infant separation in neonatal care.ConclusionsThe findings revealed that the first hours in the neonatal intensive care unit were often characterised by disjointed rather than unified care, as nurses balanced their focus across the family while parents navigated the emotional strain of separation. Organisational and structural barriers further challenged reunification, highlighting the need for care models prioritising proximity, family bonding and minimised separation.

Atrial fibrillation (AF) is the most common cardiac arrhythmia. Patients with AF often experience debilitating symptoms, stress and reduced health-related quality of life. Previous qualitative research on AF has primarily focused on the patient. AF, however, can also be burdensome for the patient's family. The aim of this study was to explore how family members experience life when a close member in the family has AF. Transcribed focus group interviews were analysed using content analysis approach inspired by Graneheim and Lundman. Two focus group interviews were conducted with 11 family members. The overall theme was Dancing with AF. The theme emerged from three categories: 1) Handling AF as a living condition, 2) Influencing the roles of family members, 3) Fear of AF attack. AF had a very significant impact on the patients' family members, forcing them to reconstruct their daily lives. AF has multiple consequences for family members and can give rise to conflicts concerning family roles. Family members have a lack of knowledge of AF and fear of how AF can cause changes in the family members' everyday lives. This study demonstrates that there is a need for further research of ways to support the family members of patients with AF.

IntroductionCardiac rehabilitation has traditionally been administered through face-to-face consultations with a specialised team of nurses, medical doctors and physiotherapists. However, the healthcare system is undergoing a significant digital transformation, which may lead to telemedicine (TM) becoming a cornerstone of healthcare. However, successful TM requires digital competencies among both patients and health professionals. This trial will examine the best methods of onboarding patients to TM by way of a co-designed cardiac telerehabilitation model with a family-focused approach.AimThe aim is to investigate how patients and family members could benefit from using TM, including video consultations and home monitoring, for cardiac rehabilitation. We ask how patients’ health literacy, digital health literacy, health-related quality of life and family support would be affected by a shift to TM.Methods and analysisThe primary outcome is the Health Literacy Questionnaire, and secondary outcomes are the eHealth Literacy Questionnaire, European Quality of Life—Five Dimensions Scale, and the Iceland—Family Perceived Support Questionnaire. The sample size is 73 patients in each group. Data will be analysed with χ2 or Fisher’s exact tests, a t-test or a Wilcoxon signed-rank test, depending on the distribution.Ethics and disseminationApproval for this trial was obtained from the Danish Data Protection Agency (P-2023-65) and the National Committee on Health Research Ethics (F-23075094). The trial will be conducted in compliance with the Declaration of Helsinki. The trial results—whether positive, neutral or negative—will be submitted for publication. The trial has been registered at ClinicalTrials.gov (NCT06320652).Trial registration number(NCT06320652).

Background Involving parents in decisions about the care of their infant is common practice in most neonatal intensive care units. However, involvement is less common in neonatal research and a gap appears to exist in understanding the process of patient and public involvement. The aim of this study was to explore parents and researchers’ experiences of patient and public involvement in a neonatal research project. Methods A qualitative design was employed, consisting of two focus group interviews, one dyadic interview, and four individual interviews with parents and researchers. The interviews followed a semi-structured guide specific to both parents and researchers. Data were analysed using content analysis as described by Graneheim and Lundman. Results A total of nine parents and four researchers participated in the study. Seven themes were consolidated into three core concepts: Embracing the ethos and pathos of patient and public involvement , Finding the path to maximise meaningful involvement , and Becoming skilled in engaging patients and the public in research. The core concepts highlighted both similarities and differences, as well as challenges and facilitators, of the experiences of the patient and public involvement process. Conclusion Patient and public involvement in research was a mutually beneficial process, facilitating learning and reflective opportunities for parents and researchers. However, there were challenges that emphasised the need for rapport building between parents and researchers, valuing everyone’s unique perspective and expertise, with clear communication and well-defined roles and goals. These insights offer a contribution for future patient and public involvement in health research. Plain English summary It is usual practice to involve parents in decisions about their babies care in neonatal intensive care units, but their involvement in research is less common. Although patient and public involvement in research is increasing, there is a lack of strategies to ensure meaningful involvement. This qualitative study used interviews, to explore how parents and researchers experienced patient and public involvement in a research project about couplet care in a neonatal intensive care unit. Nine parents and four researchers participated and the analysis revealed several themes that describes their experiences. These themes were consolidated into three main concepts: (1) Embracing the ethos and pathos of patient and public involvement, which focuses on the emotional and ethical aspects of involvement, (2) Finding the path to maximize meaningful involvement, which addresses the strategies and methods to ensure effective involvement, and (3) Becoming skilled in engaging patient and the public in research, which emphasizes the need for developing skills and knowledge for better involvement practices. These core concepts provide a comprehensive understanding of how to enhance involvement, not only in the neonatal setting, but research in general.

IntroductionFathers of preterm infants wish to be actively involved and attentive in caring for their children. The positive impacts of paternal caregiving on preterm infants’ cognitive and social development have been recognised. Awareness of the need to support fathers during early parenthood is increasing, but fathers may feel excluded when their infants are in the neonatal intensive care unit. Here, we present the protocol for a study involving the development and national implementation of a complex intervention supporting first-time fathers of preterm infants in early parenthood.Methods and analysisThe study adheres to the Medical Research Council framework for complex interventions. A multicentre, prospective, non-blinded, quasi-experimental design will be applied to evaluate the effect of a clinical and technology-based intervention targeting both nurses and the fathers. Outcomes from participants enrolled during the control (2023–2024) and intervention (2025–2026) periods, comprising 295 fathers and their partners, will be compared. Effects on parental confidence, stress, depression and mood and family and reflective functioning as well as infants’ emotional and social development will be assessed. A comprehensive process evaluation will be applied using both qualitative and quantitative methods.Ethics and disseminationThe study has been registered at Clinicaltrials.org [no. NCT0 6 116 747 (The SUPPORTED study – First-time Fathers of Preterm Infants), approved on 3 November 2023]. The Danish Data Protection Agency has approved the study (P-2022–792). The findings will be disseminated through peer-reviewed publications.Trial registration numberNCT06116747.

Background Retention of participants in cohort studies is a major challenge. A better understanding of all elements involved in participation and attrition phenomena in particular settings is needed to develop effective retention strategies. The study aimed to achieve an in-depth understanding of participant retention in longitudinal cohorts focusing on participants’ and researcher’s perspectives, across three diverse socio-geographic and cultural settings. Methods This study used a triangulation of multi-situated methods to collect data on cohort studies of children born with less than 32 weeks of gestation in Denmark, Italy and Portugal. It included focus groups and individual semi-driven interviewing with involved key actors (i.e. parents, staff, healthcare professionals, researchers) and a collaborative visual methodology. A purposive sample of 48 key actors ( n  = 13 in Denmark; n  = 13 in Italy; n  = 22 in Portugal) was collected. A triangulation of phenomenological thematic analysis with discourse analysis was applied. Cross-contextual and context-specific situational elements involved in participation and attrition phenomena in these child cohorts were identified at various levels and stages. Results Main findings included: situational challenges affecting potential and range of possibilities for implementation strategies (geopolitical environment, societal changes, research funding models); situational elements related to particular strategies acting as deterrents (postal questionnaires) and facilitators (multiple flexible strategies, reminders, regular interaction); main motivations to enrol and participate (altruism/solidarity and gratitude/sense of duty to reciprocate); main motivational deterrents to participate to follow-up waves (lack of bonding, insufficient feedback); entanglement of clinical and research follow-up as facilitator and deterrent. Conclusions The multi-situated approach used, addressing the interplay of the lived experience of individuals, was of most value to understand participation variability under different implemented strategies in-context. Cross-contextual and context-specific situational elements that have been influential factors towards participation and attrition in the cohorts were identified.

Aim. The aim of this study was to obtain insights from patients and their family members on how families are living with atrial fibrillation. Background. Atrial fibrillation is the most common cardiac arrhythmia and is often described as an emerging global epidemic affecting an estimated 33.5 million people worldwide. Living with atrial fibrillation not only affects the patient but also may negatively influence family members’ perceived health. The perspective of the family has previously been understudied, and more knowledge on how patients and their family members cope and adjust to life with atrial fibrillation may be helpful when developing future support for patients and their family members when coping with atrial fibrillation. Methods. A qualitative phenomenological study with an inductive, descriptive research approach based on Giorgi’s descriptive method was used. Data were gathered through 12 dyadic family interviews. The COnsolidated criteria for REporting Qualitative research checklist was followed while conducting the study. Results. Three major themes emerged: emotional differences, changes in family life, and uncertainty about the future. Atrial fibrillation had multiple effects on the family. Frequently, several adjustments and adaptations had to be made to accommodate life with atrial fibrillation. Conclusion. Patients with atrial fibrillation and their family members feel a need to talk about their emotions and worries. They required support and guidance to manage the challenges of living with atrial fibrillation. These results will be used in a family-focused intervention designed to support families in adjusting and managing their everyday lives with atrial fibrillation.

Background Families with an infant in need of intensive care most often experience a harmful separation after birth. This is due to a division of medical specialties into neonatal care and maternal care. Therefore, a couplet care intervention is implemented for mother‐infant dyads in a neonatal intensive care unit. This study protocol provides a comprehensive evaluation of the intervention. The aim is to evaluate the effect and implementation of a complex couplet care intervention to promote zero separation between mother and infant. Methods The couplet care intervention is a family‐centered model of care, where treatment‐requiring mother‐infant dyads will be admitted together and receive couplet care by neonatal nurses. The study adheres to the framework of the Medical Research Council and will use a mixed methods embedded design comprising a quasi‐experimental trial and a qualitative process evaluation. Finally, a health economic evaluation will be conducted to assess the cost‐effectiveness of this complex couplet care intervention. Discussion Separation of mother‐infant dyads after birth has an adverse impact on family health and well‐being. This study protocol evaluates a complex couplet care intervention. With this study, a first step is taken to help bridge the gap between current practices and a new care model to prevent the separation of mothers and their infants