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This study elicited the experiences of nurses caring for children with life-limiting conditions and their family, within a community based intellectual disability service. A qualitative descriptive research approach was adopted where purposeful sampling recruited 10 participants. Data was collected using one to one semi-structured interviews and was subsequently analysed using qualitative thematic content analysis. The findings identified a range of complexities unique to the care of children with life-limiting conditions in the intellectual disability setting. From the findings, it is clear that this is a population of highly skilled nurses who work in a challenging and complex area of practice. Further supports are required in order to meet the practice needs and support the emotional needs of this population of nurses. In doing so, high quality practice within the area will be promoted, thereby ensuring high quality care for the children and families within the disability service.
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Deficiência Intelectual , Criança , Humanos , Família , Pesquisa Qualitativa , Coleta de DadosRESUMO
The Irish health care system is based on a complex and costly mix of private, statutory, and voluntary provisions. The majority of health care expenditure comes from the state, with a significant proportion of acute hospital care funded from private insurance, but there are relatively high out-of-pocket costs for most service users. There is free access to acute hospital care, but not for primary care, for all children. About 40% of the population have free access to primary care. Universal preventive public health services, including vaccination and immunization, newborn blood spot screening, and universal neonatal hearing screening are free. Major health challenges include poverty, obesity, drug and alcohol use, and mental health. The health care system has been dominated for the last 5 years by the impact of the current recession, which has led to very sharp cuts in health care expenditure. It is unclear if the necessary substantial reform of the system will happen. Government policy calls for a move toward a patient-centered, primary care-led system, but without very substantial transfers of resources and investment in Information and Communication Technology, this is unlikely to occur.
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Serviços de Saúde da Criança , Saúde da Criança , Criança , Pré-Escolar , Humanos , IrlandaRESUMO
Background: In paediatric palliative and bereavement care, providing comprehensive support that extends beyond medical treatment to address the emotional and psychosocial needs of children and their families is essential. Memory-making interventions play a critical role in capturing cherished moments and fostering emotional resilience. However, widespread consensus on the foundation and scope of memory-making interventions for children and young people remains sparse. This review aims to identify, appraise, and synthesise the evidence on memory-making interventions for children and young people with life-limiting or life-threatening conditions and their family members receiving palliative or bereavement care. Methods: This systematic review will follow the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA). A systematic search will be undertaken from January 1, 1985, to February 27, 2024, across the following databases: PubMed, EMBASE, CINAHL (EBSCO), PsycINFO (EBSCO), Web of Science, the Cochrane Library, and Scopus. Studies across diverse research designs that examine children (0-19 years) with life-limiting or life-threatening conditions undergoing memory-making interventions with psychosocial or other outcomes will be included. Screening, data extraction, and quality appraisal will be performed by two independent reviewers, with a third reviewer resolving discrepancies. Joanna Briggs Institute guidelines for conducting mixed methods systematic reviews will be used to inform the data analysis and synthesis process. Conclusions: This review will provide critical insights into the existing evidence base on memory-making interventions in paediatric palliative and bereavement care, highlighting psychosocial and other impacts, implementation factors, and evidence quality. By identifying best practices and gaps in knowledge, this evidence review may inform future research and intervention design, or adaptation, and contribute to the enhancement of healthcare for children and young people with life-limiting and life-threatening conditions and their families as well as families in bereavement. Registration: This review was registered in PROSPERO, the International Prospective Register of Systematic Reviews (CRD42024521388; 18/03/2024).
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Quality measurement initiatives promote quality improvement in healthcare but can be challenging to implement effectively. This paper presents a Rapid Realist Review (RRR) of published literature on Quality Care-Process Metrics (QCP-M) implementation in nursing and midwifery practice. An RRR informed by RAMESES II standards was conducted as an efficient means to synthesize evidence using an expert panel. The review involved research question development, quality appraisal, data extraction, and evidence synthesis. Six program theories summarised below identify the key characteristics that promote positive outcomes in QCP-M implementation. Program Theory 1: Focuses on the evidence base and accessibility of the QCP-M and their ease of use by nurses and midwives working in busy and complex care environments. Program Theory 2: Examines the influence of external factors on QCP-M implementation. Program Theory 3: Relates to existing cultures and systems within clinical sites. Program Theory 4: Relates to nurses' and midwives' knowledge and beliefs. Program Theory 5: Builds on the staff theme of Programme Theory four, extending the culture of organizational learning, and highlights the meaningful engagement of nurses and midwives in the implementation process as a key characteristic of success. Program Theory 6: Relates to patient needs. The results provide nursing and midwifery policymakers and professionals with evidence-based program theory that can be translated into action-orientated strategies to help guide successful QCP-M implementation.
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Tocologia , Benchmarking , Atenção à Saúde , Feminino , Humanos , Gravidez , Melhoria de Qualidade , Qualidade da Assistência à SaúdeRESUMO
Background: In 2018, the Office of the Nursing and Midwifery Services Director (ONMSD) completed phase one of work which culminated in the development and launch of seven research reports with defined suites of quality care process metrics (QC-Ms) and respective indicators for the practice areas - acute care, midwifery, children's, public health nursing, older persons, mental health and intellectual disability nursing in Ireland. This paper presents a rapid realist review protocol that will systematically review the literature that examines QC-M in practice; what worked, or did not work for whom, in what contexts, to what extent, how and why? Methods : The review will explore if there are benefits of using the QC-Ms and what are the contexts in which these mechanisms are triggered. The essence of this rapid realist review is to ascertain how a change in context generates a particular mechanism that produces specific outcomes. A number of steps will occur including locating existing theories on implementation of quality care metrics, searching the evidence, selecting relevant documents, data extraction, validation of findings, synthesising and refining programme theory. This strategy may help to describe potential consequences resulting from changes in context and their interactions with mechanisms. Initial theories will be refined throughout the process by the local reference panel, comprised of eight key intervention stakeholders, knowledge users such as healthcare professionals and an expert panel. Ethical approval is not required for this rapid realist review. Conclusion: It is anticipated that the final programme theory will help to explain how QC-Ms work in practice; for whom, why and in what circumstances. Findings of this review could help to give insights into realism as a framework and how nursing and midwifery QC-Ms have been implemented previously.
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UNLABELLED: Theme: Complex health care and chronic disease management. INTRODUCTION: Increasing numbers of children with complex healthcare needs who are also dependent on medical technology are surviving and being cared for at home by their parents. AIM: To gain an in-depth understanding of the lives of parents and the impact of their caregiver role on their family when they care for their child at home. METHOD: An interpretative phenomenological design was deployed to interpret the narratives of sixteen parents through interviews and digital audio diaries. DISCUSSION: The complex journey parents undertake as caregivers to their child at home. CONCLUSION: The understanding revealed will prompt practitioners to reflect on how to promote best practice for this group of children, their parents and their families by recognising the complexity of the care parents provide for their child and the support required in order to sustain their caregiver role at home.