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Exploring the experiences, views, and needs of family members of emergency response workers: a systematic review and meta-synthesis.

Background: Emergency responders, including firefighters, police officers, and paramedics, face workplace challenges that may harm their well-being. They typically rely on family members for support, which may have damaging effects on the family system. While the experiences of emergency responders are well established, their families' subsequent struggles are less well explored.Objective: This review explores the experiences, views, and needs of family members, through determining the mental health and well-being issues that they face, and establishing ways in which family members could be supported.Method: We searched five databases (MEDLINE, Embase, PsychINFO, Scopus, and ProQuest) for qualitative papers exploring experiences of family members of emergency responders. Seventeen studies met the inclusion criteria, and data were meta-synthesized using thematic analysis.Results: Six themes and two subthemes were identified from the meta-synthesis. 'Experiences of emotional strain' reflected worry over safety and coping with volatile moods. 'Increased responsibilities' involved safeguarding emergency responders' well-being and managing household duties, at the expense of family members' own needs. Families felt 'devoted yet invisible', with sacrifices overlooked by both emergency responders and society. 'Impacts on the family dynamic' included relational detachment and frustration. 'Support for emergency responder families' from fellow emergency responder families was valued, but organizational support was limited. 'Media portrayal and societal perceptions' varied, as police families faced hostility, while firefighter and paramedic families garnered respect, particularly during the COVID-19 pandemic.Conclusions: This review highlights that family members play a central role in maintaining the well-being of emergency responders, yet simultaneously face hardships associated with their family member's work and feel undervalued despite their support. This lack of recognition extends to limited professional support. There is a critical need for targeted mental health interventions to support family members, alongside family support measures from emergency responder organizations to assist with the practical difficulties faced by families.

Humans

Eating Experiences During Cancer Treatment in Adolescents and Young Adults: A Systematic Literature Review and Meta-Synthesis.

Adolescents and young adults (AYAs) aged 15-39 with cancer face distinct challenges during treatment, with eating consistently emerging as one of the most distressing and underrecognized concerns. At a critical life stage, AYAs must navigate illness-related consequences that profoundly affect well-being. Eating reflects these broader challenges and is identified as a key issue requiring health care attention. To address this, we synthesized evidence on AYAs' eating experiences and well-being during mealtime-related activities to inform health care practice. Qualitative and mixed-method studies were identified through searches across CINAHL, Embase, PubMed, Scopus, and Web of Science for studies published up to May 2025, supplemented by snowball searches. Of 3214 records, 74 full-text articles were reviewed, and 18 met the inclusion criteria. These represented 302 AYAs, 73 relatives, and 88 health care professionals. Studies were analyzed using Joanna Briggs Institute review methods and GRADE-CERQual to support clinical interpretability. The meta-synthesis identified one core theme: "Eating as an embodied struggle and act of agency," with three subthemes: (a) living through physical and sensory disruption, (b) carrying the weight of new emotions and shifting relations, and (c) finding ways through gaps in support. Eating emerged as a disrupted, emotionally charged, yet agentic act requiring sensitive, individualized approaches. Thirteen evidence-informed recommendations were developed to guide clinical application. These emphasize early nutritional screening, dietetic support, flexible meal options, respectful family involvement, and psychosocially attuned care. Future research should codevelop and evaluate tailored interventions that address AYAs' embodied, emotional, and social needs to improve eating-related quality of life during cancer treatment.

Humans

Facilitators and Barriers to Volunteers' Involvement in Palliative Care: A Qualitative Meta-Synthesis.

OBJECTIVE: This study aims to systematically synthesize qualitative evidence on facilitators and barriers to volunteer involvement in palliative care services, providing insights to inform strategies for strengthening volunteer support systems. METHODS: PubMed, Web of Science, Embase, Cochrane Library, Medline, EBSCO, ProQuest, China National Knowledge Infrastructure, Wanfang, VIP, and Sinomed were searched from inception to December 2025 to identify qualitative studies examining factors influencing volunteer participation in palliative care. Methodological quality was assessed using the Joanna Briggs Institute Critical Appraisal Checklist for Qualitative Research. Data were analyzed using Thomas and Harden's thematic synthesis approach and managed using NVivo 12.0 software, following the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidelines. RESULTS: Thirty-one studies involving 1042 participants were included, yielding 68 findings. Facilitators included intrinsic motivation and meaning-making at the individual level; supportive relationships and teamwork at the interpersonal level; structured support and professional recognition at the organizational level; social recognition and resource integration at the community level; and institutional safeguards and governmental incentives at the policy level. Barriers included emotional burden and limited competencies at the individual level; relationship conflicts and insufficient collaboration at the interpersonal level; management deficiencies at the organizational level; community resource imbalances at the community level; and inadequate regulations and incentives at the policy level. CONCLUSION: Volunteer participation in palliative care is influenced by multiple interacting factors. Strengthening training and support systems, enhancing team collaboration, and improving institutional frameworks may help sustain volunteer engagement and improve the quality of palliative care services.

Palliative Care

Journey Mapping of the Patient Experience from Diagnosis to End of Life in Lung Cancer: A Qualitative Meta-Synthesis.

OBJECTIVES: This study aimed to systematically synthesize the lived experiences and journey narratives of lung cancer patients across disease stages, and identify key tasks and pain points during the disease course through patient journey mapping, providing evidence for comprehensive disease management throughout the patient journey. METHODS: Ten databases, including PubMed, Embase, Web of Science, Scopus, PsycINFO, CINAHL, Cochrane Library, CNKI, Wanfang, and SinoMed, were systematically searched, with a search period from database inception to August 15, 2025. The JBI Critical Appraisal Tool for qualitative studies was used to evaluate the quality of studies, and the results were integrated using a meta-aggregative approach. RESULTS: Thirteen studies were included. Based on the patient journey mapping, the lung cancer patient journey comprises four potential stages: evaluation and diagnosis, initial treatment, maintenance therapy, and end-of-life. A total of 30 themes emerged within three dimensions: tasks, emotions, and pain points. Each dimension of each stage consists of 2-3 themes. CONCLUSION: The journey of lung cancer patients is protracted and complex, characterized by stage-specific needs and challenges. Future management strategies should be tailored to these distinct phases, providing precision supportive care to optimize treatment outcomes and enhance patients' quality of life. IMPLICATIONS FOR NURSING PRACTICE: This Patient Journey Map integrates routine clinical pathways with patients' lived experiences across each stage, revealing stage-specific challenges and providing targets for tailored nursing interventions. The framework promotes multidisciplinary, digitally enabled supportive care and indicates the importance of including patients' social circles to enhance patient-centered outcomes.

Humans

Targeted Next-Generation Sequencing for Improved Clinical Outcomes in People Living With Rare Diseases in Global South: Protocol for a Systematic Review and Meta-Synthesis.

BACKGROUND: Rare diseases affect many individuals and pose major challenges in diagnosis and treatment, especially in Global South countries where health care resources are limited. Targeted next-generation sequencing (NGS) has significantly advanced diagnostic accuracy and clinical care for rare diseases globally; however, its implementation and impact within the Global South context remain insufficiently studied. OBJECTIVE: This study aims to evaluate the use, clinical benefits, challenges, and implementation outcomes of targeted NGS for diagnosing and managing rare diseases in Global South populations. Specifically, it seeks to quantify the diagnostic yield of NGS, examine its influence on subsequent clinical decision-making, and identify principal barriers to, and facilitators of, the implementation of targeted NGS approaches in these contexts. METHODS: This protocol follows the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. We will systematically search PubMed, Scopus, and Web of Science for studies published between 2005 and 2025 that report on the use of targeted NGS in Global South population with rare diseases. Two reviewers will independently perform study selection, data extraction, quality assessment, and evaluation of risk of bias by using QUADAS-2 for diagnostic accuracy studies and the risk of bias assessment tool for nonrandomized studies. Meta-analyses will be conducted to estimate pooled outcomes for diagnostic yield, with heterogeneity assessed using random effects models. Heterogeneity will be further examined through visual inspection of forest plots and by evaluating the chi-square test and I² statistic. RESULTS: The protocol has been registered with PROSPERO (CRD420251078455). Database search or screening, data extraction, and data synthesis are planned to commence in June 2026 and conclude by September 2026. Study findings will synthesize the diagnostic yield, clinical impact, and contextual determinants influencing the implementation of targeted NGS in Global South health care settings. CONCLUSIONS: This review will provide evidence on the application, advantages, limitations, and clinical outcomes of targeted NGS for individuals affected by rare diseases in countries of the Global South. The finding will identify priorities for capacity strengthening, policy development, and future genomic research. TRIAL REGISTRATION: PROSPERO CRD420251078455; https://www.crd.york.ac.uk/PROSPERO/view/CRD420251078455. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/85150.

Rare Diseases

The acceptability of blood spot screening and genome sequencing in newborn screening: a systematic review examining evidence and frameworks.

BACKGROUND: Population-wide newborn blood spot screening programmes are a successful public health intervention used to detect whether the baby is at risk of certain rare conditions, with the aim of earlier diagnosis and provision of optimal care and treatment. Evaluating candidate conditions to include in newborn blood spot and genetic sequencing raises questions regarding acceptability to parents/carers. METHODS: In the context of the possible expansion of the newborn blood spot screening programme in the United Kingdom, this review aimed to systematically review research on the acceptability to parents of newborn blood spot screening and genetic sequencing. A protocol was developed prior to commencing the review and was registered on the PROSPERO database. A team of researchers carried out the review, with checking at all stages carried out by at least two individuals. We included research published after 2013 with participants who were pregnant or a recent parent of a newborn and were resident in a high-income country. We included quantitative and qualitative studies that investigated the acceptability to parents/carers of newborn blood spot screening or genetic sequencing. Quantitative studies were narratively synthesised, and theories/frameworks identified and evaluated. Qualitative studies were analysed for recurring themes, and a meta-synthesis was carried out to compare and contrast these two types of data. We quality appraised included articles using tools appropriate for their study design. RESULTS: Searches were carried out in September to November 2023 and screening identified 25 relevant research articles. Just over half were from North America, with four existing reviews and nine qualitative studies. Domains of acceptability described in the literature were: support for screening; level of anxiety, information and knowledge; consent; views of the procedure; and support after screening. The research indicated consensus support for blood spot screening, and for expanding to some other conditions, although some parental anxiety was reported. Parents/carers mostly perceived that they had received sufficient information, but the timing of this could be improved. While parents indicated interest in genomic screening, studies highlighted the need for clearer consent procedures and greater support for parents following genomic screening than for blood spot screening. Only three included studies reported using any kind of theoretical framework. DISCUSSION: Most parents/carers found newborn blood spot screening programmes to be acceptable and favoured their large-scale implementation. A minority of parents/carers expressed concerns regarding the acceptability of processes underpinning newborn blood spot screening, such as consent, the timing of receiving information and support available after testing. More research is needed regarding the acceptability of newborn genomic sequencing screening programmes, which are less established compared with newborn blood spot screening programmes. LIMITATIONS: The over-representation of studies conducted in the United States has implications for the applicability of findings to other countries where testing is not typically mandatory and health systems differ considerably. Most studies were of cross-sectional design and there was limited representation of people from lower incomes and non-white ethnicity. While the inclusion of studies only in populations of future or very recent parents provided coherence to the findings, unclear reporting of participants may have resulted in under- or overinclusion of some studies. FUNDING: This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme as award number NIHR159927.

ACCEPTABILITY

Exploring the perceptions, experiences, and behaviours that nurses and midwives face in relation to sleep: A systematic review of qualitative evidence.

BACKGROUND: The importance of sleep for nurses and midwives is increasingly being recognised. Poor sleep is known to have negative impacts on physical health, mental wellbeing, and work performance. This has prompted efforts to promote and support staff sleep. However, further efforts are needed to understand how nurses and midwives consider and manage sleep to ensure that meaningful and effective interventions are adopted and sustained. AIMS: This review of qualitative evidence aims to examine nurses' and midwives' perceptions, experiences, and behaviours around sleep. METHODS: This review followed JBI's systematic meta-aggregative approach including development of an a priori protocol. A systematic search of six electronic databases (MEDLINE, Embase, Emcare, PsycINFO, CINAHL, and Scopus) was undertaken to identify qualitative studies that examine nurses' and midwives' perceptions, experiences, and behaviours related to sleep. The search was conducted on the 10th of October 2024. Study selection, quality appraisal, data extraction, and synthesis followed JBI approaches and the ConQual approach was used to report assessment of synthesised findings. RESULTS: Thirty-three studies were included for review, and 245 findings were aggregated into 24 categories and nine synthesised findings related to the perceptions, behaviours, and experiences. While sleep was perceived as important, poor sleep was often understood as an expected and inevitable part of the job and that there was a need to always be awake to provide continual care. Experiences influencing sleep related to personal circumstances and work-related factors, as well as professional training and institutional practices. A range of behaviours, including planning time to sleep, using sleep aids, modifying the sleep environment, and altering daytime behaviours were also described. CONCLUSION: This review identified a range of perceptions, behaviours, and experiences that may influence the sleep of nurses and midwives which are vital to supporting individual and workforce wellbeing and safe, effective clinical practice. Insights from this review can be used to better understand nurses' and midwives' relationship with sleep and to develop and enhance targeted sleep interventions and programs that aim to promote and support healthy sleep among nurses and midwives. Open Science Framework Registration: 10.17605/OSF.IO/F32UM.

Humans