OBJECTIVES:To determine the point prevalence of PICU patients with siblings, and if they have siblings, whether they visited the PICU and their interactions. DESIGN:A single-site point prevalence study conducted in a specialist Australian PICU. Survey data were collected at eight time points over a 3-week period, from February 13, 2025, to March 4, 2025. Eight PPS time points included four weekdays and four weekend days. The survey was completed by bedside PICU nurses who collected information on patient characteristics, the existence of siblings, details related to sibling visits in the PICU, and any nursing staff concerns. Data were summarized using descriptive and inferential statistics. Associations between variables were investigated using chi-square and Mann-Whitney U tests. SETTING:A 22-bed quaternary care PICU in Australia. PATIENTS:All patients were admitted to the PICU at the point of data collection. INTERVENTIONS:None. MEASUREMENTS AND MAIN RESULTS:The survey was completed for 159 of 163 patients (97.5%) admitted to the PICU on a prevalence study day. Overall, 100 of 159 patients (62.9%) had siblings. Only 28 of 100 patients (28%) had one or more siblings visit on a prevalence study day: eight sibling visits occurred on weekdays and 20 on weekends. A total of 32 siblings visited these 28 patients. Siblings of 1-4 years old visited more often than other age groups. We failed to identify an association between the occurrence of a sibling visit and distance from the hospital, patient length of stay, or intubation status. CONCLUSIONS:In this point prevalence study carried out on our PICU in Australia, in 2025, we found that around two-thirds of admissions had siblings. However, sibling visits were limited, primarily occurring on weekends. Our results will inform future planning of PICU family-centered care models with out-of-hours professional support.

INTRODUCTION:Despite increased requirements for the involvement of consumers (hereafter referred to as lived experience experts) in research, such involvement can be challenging in paediatric critical care. While guidelines exist, there are limited published examples of lived experience expert involvement in the design of paediatric intensive care research or how research teams and lived experience experts work together during this process. OBJECTIVE:The aim of this study was to explore the process of and reflections on working with parents and siblings of critically ill children to design The PICU Siblings Study. METHODS:The PICU Siblings Study is a prospective, multimethod, multistakeholder Australian study that aims to explore the process and practice of sibling inclusion in the paediatric intensive care unit (PICU) when a child is critically ill. Five PICU parents and eight siblings were involved in codesigning the study methods, from inception through to ethical approval. At the completion of the design phase, a reflective evaluation of the codesign process was undertaken by both the primary academic co-investigators and the parent partners to explore challenges, benefits, and outcomes. This article reports on our processes of codesign and the findings from the reflective evaluation. FINDINGS:First, we describe our codesign processes for The PICU Siblings Study, undertaken with parents and siblings of critically ill children. We explore our iterative processes to codesign key aspects of our study, including recruitment methods, study populations, data collection methods, and consent processes. We then share reflections from the academic co-investigators and parents on our experiences, highlighting both the emotional and logistical challenges of codesign and the benefits for both parents and the academic co-investigators. Finally, we offer practical recommendations from PICU parents to help guide future research teams to include families in research codesign. CONCLUSIONS:Our experiences provide a unique insight into the research codesign process with PICU families, shedding light on a critical but often under-reported aspect of research. These experiences help to demonstrate the feasibility and impact of meaningful family involvement in PICU research and offer practical guidance for future codesign initiatives in critical care settings.

BACKGROUND:When a child dies in a pediatric intensive care unit (PICU) from a sudden or unexpected cause such as trauma or sepsis, intense grief felt by the child's family can cause sustained psychosocial impacts. Supporting unexpectedly bereaved families with evidence-based bereavement care is key to improving grief outcomes, and understanding their specific needs is essential to inform the delivery of bereavement care in PICUs. AIM:To understand what is known about (1) bereavement care needs of families who have experienced the unexpected death of a child in a PICU, and (2) approaches to address families' needs. METHODS:An integrative review was systematically conducted with the protocol registered a priori on the Open Science Framework. Original peer-reviewed research articles relating to relatives of children who died an unexpected death in a PICU were included from OVID Medline, PsycINFO, CINAHL, SCOPUS, and ProQuest, along with guidelines from Google© searching. Articles were critically appraised using Critical Appraisal Skill Program, Mixed Methods Appraisal Tool, and Appraisal of Guidelines, Research and Evaluation II checklists, and data were synthesized using the constant comparison method. RESULTS:Twenty-nine original research articles (15 qualitative, 11 quantitative, 1 mixed method, and 2 secondary analyses) and five guidelines were included in this review. Three original articles focused on unexpected child death exclusively. From the findings of all 34 articles, four linked themes were identified: (1) connection and (2) communication with PICU clinicians, (3) awareness of the impacts of unexpected death, and (4) emotional and physical support for family members. CONCLUSION:Unexpectedly bereaved family members' needs included close relationships with clinicians and caring support before and after their child's death, including ongoing follow-up from the PICU. Further targeted research is needed to better understand the specific needs of unexpectedly bereaved families, gain diverse and representative evidence in this area, and develop innovative, evidence-based interventions to improve bereavement outcomes for the whole family.

BACKGROUND:Advancements in neonatal and paediatric intensive care have improved survival of children born very preterm or with complex health conditions. However, many of these children will subsequently require admission to paediatric intensive care. How families navigate experiences and knowledge across these different admissions remains poorly understood. AIM:To explore the experiences of parents with a child admitted to both a neonatal unit (NNU) and a paediatric intensive care unit (PICU) with a focus on the development of parental knowledge. STUDY DESIGN:We conducted an exploratory qualitative study. Semi-structured interviews were conducted with 18 parents of 15 children who experienced admission to both NNU and PICU. Participants were recruited via national charities and interviewed remotely. Data were analysed using inductive content analysis, focussing on parents' temporal experiences. FINDINGS:Parents described knowing their child as a dynamic state evolving throughout the NNU to the PICU. In the NNU, parents initially learned to know their child through hands-on care, often facilitated by staff, though physical and emotional barriers sometimes hindered bonding. Discharge from NNU was a key transition moment, with some parents feeling confident while others felt uncertain about managing their child's healthcare needs at home without the support of staff and medical equipment. At PICU admission, parents brought experiential knowledge, the value of which was not always recognised by healthcare professionals. This lack of acknowledgement sometimes led to missed opportunities for provision of safe care. During PICU stays, parents wanted their expertise respected and integrated into care, particularly for children requiring ongoing specialist care, which was often provided by families, outside of PICU. CONCLUSIONS:Parental knowledge of their child, and their previous experiences, is vital to support safe care delivery but sometimes overlooked. Recognising parents as expert and equal partners in care can potentially improve safety, communication and family-centred practice. RELEVANCE FOR CLINICAL PRACTICE:Neonatal and paediatric healthcare teams should actively acknowledge and incorporate parental expertise during and when transitioning between NNU and PICU. Parents' experiences provide additional insights, which provide opportunities for better care. Improved communication across neonatal and paediatric services may enhance outcomes and parental confidence.

BACKGROUND:Intensive Care Units (ICUs) care for critically ill patients across all age groups, with many deaths occurring during or shortly after admission. For families, this can be associated with significant psychological distress, including prolonged grief, depression, and post-traumatic stress. Family experiences are influenced by the quality of end-of-life communication, involvement in decision-making, and the availability of bereavement support. Despite this, bereavement care across neonatal, paediatric, and adult ICUs remains inconsistent, highlighting the need for evidence-based strategies. OBJECTIVE:To identify, summarise, and report the effectiveness and impact of end-of-life and bereavement interventions delivered by ICU staff on family psychological, social, and physiological outcomes. DESIGN:Overview of reviews. SETTING(S):Neonatal, paediatric, and adult ICUs internationally. METHODS:A comprehensive search (PROSPERO CRD42024581827) was conducted across Medline, Embase, Scopus, CINAHL, Cochrane Database of Systematic Reviews, Web of Science, and PsycINFO, with an updated search in 2025. Screening was completed by two research team members. Risk of bias was assessed using ROBIS. Data were extracted as reported in each systematic review and analysed narratively. RESULTS:Fifteen systematic reviews (145 primary studies) were included across neonatal (n = 4), paediatric (n = 1), adult (n = 9), and mixed settings. Interventions were diverse and often multi-component. Communication-focused strategies that were timely, honest, and individualised were associated with improved family satisfaction and perceptions of care. Opportunities for family presence, shared decision-making, and relational nursing support were reported as central to understanding, acceptance, and adjustment. Memory making and bereavement follow-up were valued, though impacts on psychological outcomes varied. Evidence was limited by inconsistent outcome measures and minimal paediatric-specific reviews. CONCLUSIONS:ICU family-focused end-of-life and bereavement interventions can provide meaningful support, but effectiveness is difficult to determine due to inconsistent implementation and methodological variation. Findings highlight the importance of individualised and relational approaches, and suggest culturally responsive care may influence how interventions are experienced.

BACKGROUND:The death of a child is a catastrophic event, and to experience this loss within the complex environment of a paediatric intensive care unit (PICU) can be highly traumatic for parents. With current bereavement literature heavily focused on children with known life-limiting conditions, the unique grief experience of unexpected child death is poorly understood. AIM:The aim of this study was to increase understanding of bereaved family members' experience of care in a PICU after the unexpected death of their child. METHODS:Two focus groups and two interviews were conducted with adult family members of children who had died unexpectedly in a tertiary PICU 6 months to 5 years prior. A qualitative, constructivist approach was adopted, utilising semistructured discussions following a facilitation guide underpinned by meaning reconstruction framework as the guiding grief theory. Data were analysed thematically. RESULTS:There were 15 participants, including four fathers, 10 mothers, and one family friend. Participants shared vivid and emotional recollections of the death of their child, with a central concept of being broken. Five key themes captured participants' experience of care in the PICU including respectful communication, meaningful time, memories we can live with, face(s) ofsupport, and involving the whole family. Participants described well-delivered elements of care that supported their bereavement needs, as well as poorly delivered care that contributed to their feelings of being broken. CONCLUSION:Family members valued care that was respectfully communicated by a trusted clinician, provided choice over significant time periods and meaning-making opportunities at the end of life, and was inclusive of all family members. These insights offer guidance to improve PICU bereavement practices for unexpected deaths.

Introduction: A minority of families experience the death of a child in a Paediatric Intensive Care Unit (PICU) setting from unexpected causes, such as sepsis, or trauma. For these families, the sudden shock of their child’s death can increase the likelihood of complex grief responses, such as post-traumatic stress and prolonged grief disorder. However, systematic bereavement follow-up services to support their grief are currently lacking.Aim: To understand family perspectives on gaps in bereavement support to inform the development of a PICU bereavement service.Methods: A single site qualitative study was conducted following a constructivist approach, underpinned by meaning reconstruction theory. Adult relatives of children who had died unexpectedly in the PICU in the past five years participated in semi-structured focus groups and interviews. Data analysis followed a thematic approach. Results: Fifteen participants (four fathers, 10 mothers and one close family friend) participated in two focus groups and two interviews. Six themes were developed around a central concept of feeling lost: 1) harmful communication, 2) unresolved grief roadblocks, 3) searching and finding nothing, 4) coronial complexities, 5) financial burden, and 6) caregivers needing care. Implications For Clinical Practice: Clinicians should establish trusting relationships with families before initiating bereavement contact, and ensure communication is agreed upon. Families may benefit from alternatives to medical bereavement meetings held in hospital to unpack their questions and concerns. Clinicians should provide practical guidance on navigating available grief supports, considering all family members’ needs while acknowledging financial constraints. Many families find the coronial process challenging and require ongoing support. Conclusion: Families felt lost following their child’s unexpected death, and bereavement care was fragmented, difficult to find and often unsuitable. Further research and service improvements are needed to better support all family members after the unexpected death of a child in a PICU.

Aim To explore the experience and practices of clinical research nurses in Victoria, Australia.Design Qualitative descriptive design with reflexive thematic analysis.Methodology Semi-structured interviews were conducted with ten clinical research nurses between October and December 2023 in Victoria, Australia.Results Three phases (overarching themes) were generated: (1) Becoming a clinical research nurse, occurred by chance with a stressful and unsupportive transition period; (2) Being a clinical research nurse, was described as an ongoing development of confidence, specialised skills and knowledge; and (3) Building a clinical research nurse role, was described as challenging due to limited educational and career opportunities.Conclusion Clinical research nurses experienced a limited number of clear educational and career pathways that they could use to plan and grow in the nursing profession.Implications for the Profession and/or Patient Care Addressing support and career development needs may ease clinical research nurses' transition and improve career planning.Impact This study addresses a gap by highlighting the limited structured career pathways, formal mentorship and ongoing educational planning for clinical research nurses. Findings illustrate that clinical research nurses often begin unprepared, gradually develop confidence and skills, but continue to struggle with unclear career development plans. The findings can inform nursing leadership, educators and policymakers to better support clinical research nurses.Reporting Method The Consolidated Criteria for Reporting Qualitative Research Checklist (COREQ).Patient or Public Contribution No patient or public contribution.

OBJECTIVES:Family-Centred Care (FCC) is a cornerstone of Paediatric Intensive Care Unit (PICU) care. While FCC is well defined, debate exists as to how 'family' is or should be defined. FCC research commonly focuses on parents, particularly mothers. To ensure PICU research represents all family members' voices, understanding how family is currently used and understood within PICU research is required. Therefore, this systematic concept analysis explored the concept of 'family' within PICU FCC research. METHODS:Following Rodgers' Evolutionary Concept Analysis method, a systematic search of Cumulative Index of Nursing and Allied Health Literature, OVID Medline, Allied and Complementary Medicine Database, PsycINFO, and Nursing and Allied Health Database (ProQuest) was conducted in November 2023. All citations underwent two stage screening based on a pre-developed protocol. Data related to attributes, antecedents, and consequences were extracted and analysed using open coding. RESULTS:Twenty-four articles were included. Attributes of 'family' in PICU FCC research included: Family characteristics; Recognition of adversity and vulnerability, and Evolving expectations of family. Antecedents included: A child in PICU; (Child)- and Family-Centred Care; and Hospital culture and environment. Consequences included impacts on delivery of care in PICU; and impact on PICU research. CONCLUSIONS:Despite addressing a range of important issues, FCC research in PICUs lacks a clear definition and operationalisation of the concept of 'family'. This impacts on subsequent care and research design. Addressing this gap is key to developing an inclusive FCC culture in PICU research. IMPLICATIONS FOR CLINICAL PRACTICE:A historically narrow definition of family means that most PICU family support is aimed at parents. To meet the needs of a changing society, clinical support services should consider extended family, including grandparents and siblings. More broadly, PICUs should challenge the definition and operationalisation of "family centred care" to ensure families are properly supported during a PICU admission.

OBJECTIVES:This review aimed to chart existing literature and identify gaps in the evidence base concerning palliative and end-of-life care perspectives and experiences among different generations of African migrants residing outside the continent. METHODS:This review adhered to a predefined protocol, utilizing the Arksey and O'Malley 5-stage framework, as refined by Danielle Levac and colleagues. A systematic search of 5 bibliographic databases (from inception to December 2022) yielded 79 published studies. After title, abstract, and full-text screening using Covidence®, 7 studies met the inclusion criteria. Data extraction was guided by a conceptual framework tailored to the research topic and questions, with results presented in the narrative form. RESULTS:Cultural and religious beliefs and practices significantly shaped African migrants' perspectives on end-of-life care. A nuanced boundary between palliative and curative care emerged, with the former often stigmatized and stereotypically associated with death and dying. Common barriers to accessing end-of-life care included limited awareness, low literacy, and perceived inadequacy of culturally sensitive care, resulting in disparities in both access and outcomes. Additionally, reluctance to discuss death and dying, along with mistrust of Western healthcare systems, constituted significant obstacles. The studies underscored the necessity of enhancing provider-patient communication by engaging with migrants to raise awareness of services and fostering inclusive healthcare environments for improved care outcomes. SIGNIFICANCE OF RESULTS:Existing research on racial and ethnic disparities underscores the unequal quality and outcomes of end-of-life care across various racial groups. However, there is still insufficient understanding of these diverse end-of-life care needs, particularly in host countries. Bridging this knowledge gap is crucial for reducing health disparities and enhancing the delivery of culturally sensitive care within Western healthcare systems.

BACKGROUND:The provision of end-of-life care for children in intensive care is a stressful and traumatic event for parents with immediate and life-long impacts. End-of-life care for children is also challenging for critical care nurses who must balance the child's clinical requirements concurrently with facilitating and supporting the needs of parents and family members. RESEARCH QUESTION:What is the research evidence about nurses' and parents' experiences of the provision of end-of-life care in intensive care for children? REVIEW METHODS:Following registration with the International Prospective Register of Systematic Reviews, a systematic review was undertaken. A combination of keywords, synonyms, and Medical Subject Headings were used across Cumulative Index for Nursing and Allied Health (CINAHL) Complete, Medline, and APA PsycInfo databases. Papers were independently assessed against inclusion and exclusion criteria. Included papers were assessed for quality. Narrative synthesis was used to analyse and present the findings. FINDINGS:From 40,904 records screened, 55 research publications were included, representing the perspectives of nurses, mothers, fathers, extended family, and legal guardians. Narrative synthesis revealed seven themes identified from the nurse and parent experiences: (i) communication; (ii) end-of-life decision-making; (iii) suffering; (iv) preparing for death; (v) at the end of life; (vi) after death; and (vii) nurse impacts. While there was mostly concordance between nurse and parent experiences, there was some discord between parents' communication needs and nurses' understanding of their role in communication. This review also highlighted how nurses commit to supporting parents in their grief and bereavement while concurrently managing their own emotions in response to a child's death. CONCLUSION:A child's death cannot always be prevented. By exploring nurses' and parents' experiences of end-of-life care, as they occur simultaneously and in parallel, it is possible to build understanding and evolve practices to improve the experience of end-of-life care for children for all involved.

Paediatric intensive care provides specialist expertise and support for critically ill children, often with complex conditions or in life-threatening circumstances. Hospitalisation of a child in a Paediatric Intensive Care Unit (PICU) can be extremely stressful for both the child and family which makes research in this area challenging. The involvement of patients and families (consumers) in the design and conduct of research in PICU is essential to ensure research is aligned with their priorities and meets their needs. However, the current level of consumer and community involvement (CCI) in Australia and New Zealand (ANZ) PICU research is unknown. This protocol reports a mixed-methods environmental scan employing two phases. Phase 1, a scoping review, will include published, unpublished, and ongoing PICU research, reporting information about study methodology and conduct, and CCI. Quantitative data will be primarily reported using descriptive statistics, and inductive content analysis will be used for qualitative data. Phase 2, semi-structured interviews, will be conducted with purposive sampling of research teams and consumers to gather insights about their experiences of CCI in PICU research, using content analysis to identify key concepts. Environmental scanning is an effective approach to information gathering and has been used in healthcare as an optimal method for studying real-world interventions. Our study will advance understanding of the current state of CCI in PICU research, identifying strengths, challenges, and areas for improvement. With the assessment of the needs of both consumers and the research community, our study will enable the development of strategies for improving CCI and subsequently the quality of PICU research. A multifaceted approach to dissemination of the findings of this environmental scan, informed by consumer advisors, will be used to reach diverse audiences. This may include email distribution, social media, academic journals, conferences or relevant institutional symposiums. Clinicians in the Paediatric Intensive Care Unit (PICU) provide care to some of the sickest children in the hospital. Research in this area can be difficult because children are often very unwell, and families may be distressed and unable to think about research. Because of this, it is important that research is planned carefully, in partnership with patients and families who have experienced the PICU. This makes sure research aligns with their priorities and is conducted in a way that meets their needs. In Australia and New Zealand, involving patients and families in the design, doing, and sharing of research is called Consumer and Community Involvement (CCI). CCI helps to make sure that research is important, useful, fair, and matches the needs and wants of PICU patients and families. Involving patients and families in research is important, but there are many different approaches, and we don’t know what works best in PICU research. This project will map how patients and families have been, and are currently, involved in research projects in PICUs across Australia and New Zealand. This project will have two parts. First, we will find and summarise PICU studies to describe how patients and families have been and are involved in PICU research in Australia and New Zealand. Second, we will interview researchers and consumers to get a deeper understanding of their experience of CCI. We hope this study will provide a clearer picture of how patients and families are currently involved in PICU research, what’s working well, what isn’t, and where there is a need for improvement.

Family-centred care (FCC) is central to care of children and families across healthcare settings. Research exploring FCC is increasing, so there is a need to identify clinical and research priority areas. This review aimed to describe FCC research for children and families in the 21st century. Studies were sourced from CINAHL, Ovid Medline, and Embase and underwent two-stage screening, guided by a published protocol. Data were extracted on study authorship, author discipline, funding, study methodology, study findings, and use of 'FCC'. Analysis included descriptive statistics, Pearson's Chi-Squared tests, and content analysis. Five hundred and seventy-nine articles were included. Most used quantitative methodologies and were published from 2010, predominantly by authors from nursing or medical disciplines. Most studies were conducted in acute care settings, typically in North America, and primarily included nurses or mothers as participants. FCC was typically defined using multiple references, with several key authors identified. Future research should focus on historically underrepresented clinical and geographical areas and include multidisciplinary team members. Increasing cultural and familial diversity in FCC research is also necessary to ensure inclusive FCC practices that are transferrable within and between clinical and geographical settings.

Objectives To map the current literature on interventions designed to enhance Family Centred Care (FCC) in Neonatal Intensive Care Units (NICUs) and identify gaps in the existing literature. Methods Following Arksey and O’Malley’s scoping review framework, a comprehensive search was conducted on November 10th, 2023, and updated on the 20th May 2025. Four databases were searched: Medline via OVID, CINAHL via EBSCO-Host, OVID Embase and PROQUEST. Studies were included if they described interventions targeting FCC in NICUs. Two reviewers independently conducted the screening at both phases with conflicts resolved by a third reviewer. Results The review identified 31 studies outlining 26 interventions, categorised into four categories: Family centred care bundles; Educational interventions; Communication interventions; and Environmental interventions. Study participants included mothers, fathers, families, and healthcare workers, often restricted to specific languages and cultures. Most outcome measures predominantly reflected the perspectives of mothers and nurses. Many interventions were associated with improvement in family engagement and satisfaction. However, evidence was limited on long-term neonatal and parental outcomes and sustainability of the FCC practices. While some interventions, such as Family Integrated Care (FiCare) and The Close Collaboration Program, have been extensively studied, others have been examined only to a limited extent. Conclusions This review investigated interventions to enhance FCC in the NICU. The findings highlighted a range of interventions designed to improve family experiences and neonatal outcomes. This review underscores the need for standardised implementation studies on FCC interventions in NICUs. While numerous interventions successfully increased parental involvement and positively influenced staff perspectives, their effectiveness often hinges on the implementation strategies employed, as well as the support from institutions and healthcare providers. Implications for clinical practice Understanding FCC interventions implemented worldwide will broaden the application of FCC within the NICU. Further investigation into these interventions across various NICUs is necessary, involving diverse family members and healthcare professionals in assessing outcomes.