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1.
BMC Med Ethics ; 25(1): 20, 2024 02 19.
Artículo en Inglés | MEDLINE | ID: mdl-38374022

RESUMEN

BACKGROUND: There is considerable variation in the functionality of bioethical services in different institutions and countries for children in hospital, despite new challenges due to increasing technology supports for children with serious illness and medical complexity. We aimed to understand how bioethics services address bioethical concerns that are increasingly encountered in paediatric intensive care. METHODS: A qualitative descriptive design was used to describe clinician's perspectives on the functionality of clinical bioethics services for paediatric intensive care units. Clinicians who were members of formal or informal clinical bioethics groups, or who were closely involved with the process of working through ethically challenging decisions, were interviewed. Interviews took place online. Resulting transcripts were analysed using thematic analysis. RESULTS: From 33 interviews, we identified four themes that described the functionality of bioethics services when a child requires technology to sustain life: striving for consensus; the importance of guidelines; a structure that facilitates a time-sensitive and relevant response; and strong leadership and teamwork. CONCLUSIONS: Clinical bioethics services have the potential to expand their role due to the challenges brought by advancing medical technology and the increasing options it brings for treatment. Further work is needed to identify where and how bioethics services can evolve and adapt to fully address the needs of the decision-makers in PICU.


Asunto(s)
Bioética , Niño , Humanos , Investigación Cualitativa , Unidades de Cuidado Intensivo Pediátrico , Toma de Decisiones , Consenso
2.
Eur J Pediatr ; 182(4): 1517-1532, 2023 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-36780041

RESUMEN

Children with complex care needs (CCNs) are in need of improved access to healthcare services, communication, and support from healthcare professionals to ensure high-quality care is delivered to meet their needs. Integrated care is viewed as a key component of care delivery for children with CCNs, as it promotes the integration of healthcare systems to provide family and child-centred care across the entire health spectrum. There are many definitions and frameworks that support integrated care, but there is a lack of conceptual clarity around the term. Furthermore, it is often unclear how integrated care can be delivered to children with CCNs, therefore reinforcing the need for further clarification on how to define integrated care. An evolutionary concept analysis was conducted to clarify how integrated care for children with CCNs is defined within current literature. We found that integrated care for children with CCNs refers to highly specialised individualised care within or across services, that is co-produced by interdisciplinary teams, families, and children, supported by digital health technologies.  Conclusion: Given the variation in terms of study design, outcomes, and patient populations this paper highlights the need for further research into methods to measure integrated care. What is Known: • Children with complex care needs require long-term care, and are in need of improved services, communication, and information from healthcare professionals to provide them with the ongoing support they need to manage their condition. • Integrated care is a key component in healthcare delivery for children with complex care needs as it has the potential to improve access to family-centred care across the entire health spectrum. What is New: • Integrated care for children with CCNs refers to highly specialised individualised care within or across services, that is co-produced by interdisciplinary teams, families, and children, supported by digital health technologies. • There is a need for the development of measurement tools to effectively assess integrated care within practice.


Asunto(s)
Prestación Integrada de Atención de Salud , Cuidados a Largo Plazo , Humanos , Calidad de la Atención de Salud
3.
Eur J Pediatr ; 182(10): 4707-4721, 2023 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-37566281

RESUMEN

Children continue to experience harm when undergoing clinical procedures despite increased evidence of the need to improve the provision of child-centred care. The international ISupport collaboration aimed to develop standards to outline and explain good procedural practice and the rights of children within the context of a clinical procedure. The rights-based standards for children undergoing tests, treatments, investigations, examinations and interventions were developed using an iterative, multi-phased, multi-method and multi-stakeholder consensus building approach. This consensus approach used a range of online and face to face methods across three phases to ensure ongoing engagement with multiple stakeholders. The views and perspectives of 203 children and young people, 78 parents and 418 multi-disciplinary professionals gathered over a two year period (2020-2022) informed the development of international rights-based standards for the care of children having tests, treatments, examinations and interventions. The standards are the first to reach international multi-stakeholder consensus on definitions of supportive and restraining holds.    Conclusion: This is the first study of its kind which outlines international rights-based procedural care standards from multi-stakeholder perspectives. The standards offer health professionals and educators clear evidence-based tools to support discussions and practice changes to challenge prevailing assumptions about holding or restraining children and instead encourage a focus on the interests and rights of the child. What is Known: • Children continue to experience short and long-term harm when undergoing clinical procedures despite increased evidence of the need to improve the provision of child-centred care. • Professionals report uncertainty and tensions in applying evidence-based practice to children's procedural care. What is New: • This is the first study of its kind which has developed international rights-based procedural care standards from multi-stakeholder perspectives. • The standards are the first to reach international multi-stakeholder consensus on definitions of supportive and restraining holds.


Asunto(s)
Consenso , Técnicas y Procedimientos Diagnósticos , Pediatría , Adolescente , Humanos , Técnicas y Procedimientos Diagnósticos/ética , Técnicas y Procedimientos Diagnósticos/normas , Niño , Pediatría/ética , Pediatría/normas
4.
Health Expect ; 2023 Nov 20.
Artículo en Inglés | MEDLINE | ID: mdl-37984806

RESUMEN

INTRODUCTION: Adolescents with Type 1 diabetes are a cohort whose self-management of their diabetes care often declines during adolescence which can lead to adverse health outcomes. Research indicates that providers find it challenging to engage adolescents in communication exchanges during triadic encounters in diabetes clinics. Our study aimed to explore adolescents, parents, and providers' experiences of clinic encounters. METHODS: A qualitative study was conducted with a convenience sample of 13 adolescents with Type 1 diabetes (aged 11-17), 14 parents, and seven providers. Participants were recruited from two outpatient diabetes clinics in two urban children's hospitals, Ireland. Data were obtained using a combination of interviews and focus groups. Data were analysed thematically. RESULTS: Adolescents and their parents appeared to hold both positive and negative experiences of diabetes clinic encounters. Providers reported challenges associated with engaging adolescents in communication exchanges. The structure, focus and style of clinic encounters created barriers that potentially led to suboptimal adolescent participation and impaired provider-adolescent communication during clinic visits. CONCLUSIONS: The findings provide insights into the challenges associated with adolescents' engagement in communication encounters in diabetes clinics. Healthcare providers could encourage adolescents to be more actively involved in their diabetes management, by taking an adolescent-centred approach and creating a nonjudgemental milieu. Focusing on adolescent's agenda could lead to more meaningful and relevant discussions between providers and adolescents and ensure more tailored education in the time available. Adolescence is a risky period for nonadherence and adverse health complications; therefore, it is critical that providers make every contact count in diabetes clinic encounters. PATIENT OR PUBLIC INVOLVEMENT: The study's design and delivery were guided by two advisory groups, comprising (1) five adolescents living with Type 1 diabetes (T1D) and (2) five parents of an adolescent with T1D.

5.
BMC Med Ethics ; 24(1): 55, 2023 07 28.
Artículo en Inglés | MEDLINE | ID: mdl-37507700

RESUMEN

BACKGROUND: The use of long-term life-sustaining technology for children improves survival rates in paediatric intensive care units (PICUs), but it may also increase long-term morbidity. One example of this is children who are dependent on invasive long-term ventilation. Clinicians caring for these children navigate an increasing array of ethical complexities. This study looks at the meaning clinicians give to the bioethical considerations associated with the availability of increasingly sophisticated technology. METHODS: A hermeneutic phenomenological exploration of the experiences of clinicians in deciding whether to initiate invasive long-term ventilation in children took place, via unstructured interviews. Data were analysed to gain insight into the lived experiences of clinicians. Participants were from PICUs, or closely allied to the care of children in PICUs, in four countries. RESULTS: Three themes developed from the data that portray the experiences of the clinicians: forming and managing relationships with parents and other clinicians considering, or using, life sustaining technology; the responsibility for moral and professional integrity in the use of technology; and keeping up with technological developments, and the resulting ethical and moral considerations. DISCUSSION: There are many benefits of the availability of long-term life-sustaining technology for a child, however, clinicians must also consider increasingly complex ethical dilemmas. Bioethical norms are adapting to aid clinicians, but challenges remain. CONCLUSION: During a time of technological solutionism, more needs to be understood about the influences on the initiation of invasive long-term ventilation for a child. Further research to better understand how clinicians, and bioethics services, support care delivery may positively impact this arena of health care.


Asunto(s)
Bioética , Padres , Niño , Humanos , Principios Morales , Actitud del Personal de Salud , Cuidados Críticos
6.
BMC Med Res Methodol ; 22(1): 198, 2022 07 21.
Artículo en Inglés | MEDLINE | ID: mdl-35864457

RESUMEN

BACKGROUND: The decision to initiate invasive long-term ventilation for a child with complex medical needs can be extremely challenging. TechChild is a research programme that aims to explore the liminal space between initial consideration of such technology dependence and the final decision. This paper presents a best practice example of the development of a unique use of the factorial survey method to identify the main influencing factors in this critical juncture in a child's care. METHODS: We developed a within-subjects design factorial survey. In phase 1 (design) we defined the survey goal (dependent variable, mode and sample). We defined and constructed the factors and factor levels (independent variables) using previous qualitative research and existing scientific literature. We further refined these factors based on expert feedback from expert clinicians and a statistician. In phase two (pretesting), we subjected the survey tool to several iterations (cognitive interviewing, face validity testing, statistical review, usability testing). In phase three (piloting) testing focused on feasibility testing with members of the target population (n = 18). Ethical approval was obtained from the then host institution's Health Sciences Ethics Committee. RESULTS: Initial refinement of factors was guided by literature and interviews with clinicians and grouped into four broad categories: Clinical, Child and Family, Organisational, and Professional characteristics. Extensive iterative consultations with clinical and statistical experts, including analysis of cognitive interviews, identified best practice in terms of appropriate: inclusion and order of clinical content; cognitive load and number of factors; as well as language used to suit an international audience. The pilot study confirmed feasibility of the survey. The final survey comprised a 43-item online tool including two age-based sets of clinical vignettes, eight of which were randomly presented to each participant from a total vignette population of 480. CONCLUSIONS: This paper clearly explains the processes involved in the development of a factorial survey for the online environment that is internationally appropriate, relevant, and useful to research an increasingly important subject in modern healthcare. This paper provides a framework for researchers to apply a factorial survey approach in wider health research, making this underutilised approach more accessible to a wider audience.


Asunto(s)
Familia , Niño , Humanos , Proyectos Piloto , Investigación Cualitativa , Reproducibilidad de los Resultados , Encuestas y Cuestionarios
7.
J Med Ethics ; 48(12): 1068-1075, 2022 12.
Artículo en Inglés | MEDLINE | ID: mdl-34282042

RESUMEN

BACKGROUND: Decision-making in initiating life-sustaining health technology is complex and often conducted at time-critical junctures in clinical care. Many of these decisions have profound, often irreversible, consequences for the child and family, as well as potential benefits for functioning, health and quality of life. Yet little is known about what influences these decisions. A systematic review of reasoning identified the range of reasons clinicians give in the literature when initiating technology dependence in a child, and as a result helps determine the range of influences on these decisions. METHODS: Medline, EMBASE, CINAHL, PsychINFO, Web of Science, ASSIA and Global Health Library databases were searched to identify all reasons given for the initiation of technology dependence in a child. Each reason was coded as a broad and narrow reason type, and whether it supported or rejected technology dependence. RESULTS: 53 relevant papers were retained from 1604 publications, containing 116 broad reason types and 383 narrow reason types. These were grouped into broad thematic categories: clinical factors, quality of life factors, moral imperatives and duty and personal values; and whether they supported, rejected or described the initiation of technology dependence. The majority were conceptual or discussion papers, less than a third were empirical studies. Most discussed neonates and focused on end-of-life care. CONCLUSIONS: There is a lack of empirical studies on this topic, scant knowledge about the experience of older children and their families in particular; and little written on choices made outside 'end-of-life' care. This review provides a sound basis for empirical research into the important influences on a child's potential technology dependence.


Asunto(s)
Calidad de Vida , Cuidado Terminal , Niño , Recién Nacido , Humanos , Adolescente , Familia , Tecnología
8.
BMC Palliat Care ; 21(1): 185, 2022 Oct 17.
Artículo en Inglés | MEDLINE | ID: mdl-36244981

RESUMEN

BACKGROUND: For children with life-limiting conditions home care is a key component of pediatric palliative care. However, poor information is available on service coverage and in particular on country-specific pediatric palliative home care characteristics. The aim of the study was therefore to describe the association between pediatric palliative care coverage and national activities and obtain detailed information on the pediatric palliative home care structure in different European countries. METHODS: Online survey with in-country experts from N = 33 European countries. RESULTS: Pediatric palliative home care (65.6%) represented the most pediatric palliative care units (15.6%) and the least common services. National documents constituted the most widespread national pediatric palliative care activity (59.4%) and were associated with available services. Pediatric palliative home care could be mostly accessed as a service free of charge to families (95.2%) from the time of a child's diagnosis (85.7%). In most countries, oncological and non-oncological patients were cared for in pediatric palliative home care. Only a minority of home care teams covered home-ventilated children. Pediatric palliative home care usually comprised medical care (81.0%), care coordination (71.4%), nursing care (75.0%) and social support (57.1%). Most countries had at least two professional groups working in home care teams (81.0%), mostly physicians and nurses. In many countries, pediatric palliative home care was not available in all regions and did not offer a 24 h-outreach service. CONCLUSIONS: Pediatric palliative care provision in Europe is heterogeneous. Further work on country-specific structures is needed.


Asunto(s)
Servicios de Atención de Salud a Domicilio , Cuidados Paliativos , Pediatría , Niño , Europa (Continente) , Encuestas de Atención de la Salud , Servicios de Atención de Salud a Domicilio/estadística & datos numéricos , Humanos , Cuidados Paliativos/estadística & datos numéricos , Pediatría/estadística & datos numéricos
9.
Qual Health Res ; 32(6): 916-928, 2022 05.
Artículo en Inglés | MEDLINE | ID: mdl-35348409

RESUMEN

The role and potential of bioethics input when a child requires the initiation of technology dependence to sustain life is relatively unknown. In particular, little is understood about the meaning physicians give to bioethics as a source of support during the care of children in pediatric intensive care who require long-term ventilation (LTV). We used a hermeneutic phenomenological approach to underpin the collection and analysis of data. Unstructured interviews of 40 physicians in four countries took place during 2020. We found that elements of trust, communication and acceptance informed the physicians' perceptions of the relationship with bioethics. These ranged from satisfaction to disappointment with their input into critical decisions. Bioethics services have potential to help physicians gain clarity over distressing and complex care decisions, yet physicians perceive the service inconsistently as a means of support. This research provides a sound basis to guide more beneficial interactions between clinicians and bioethics services.


Asunto(s)
Bioética , Médicos , Niño , Comunicación , Familia , Humanos
10.
Eur J Pediatr ; 180(1): 1-12, 2021 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-32710305

RESUMEN

There are an increasing number of children who are dependent on medical technology to sustain their lives. Although significant research on this issue is taking place, the terminology used is variable and the concept of technology dependence is ill-defined. A systematic concept analysis was conducted examining the attributes, antecedents, and consequences of the concept of technology dependent, as portrayed in the literature. We found that this concept refers to a wide range of clinical technology to support biological functioning across a dependency continuum, for a range of clinical conditions. It is commonly initiated within a complex biopsychosocial context and has wide ranging sequelae for the child and family, and health and social care delivery.Conclusion: The term technology dependent is increasingly redundant. It objectifies a heterogenous group of children who are assisted by a myriad of technology and who adapt to, and function with, this assistance in numerous ways. What is Known: • There are an increasing number of children who require medical technology to sustain their life, commonly referred to as technology dependent. This concept analysis critically analyses the relevance of the term technology dependent which is in use for over 30 years. What is New: • Technology dependency refers to a wide range of clinical technology to support biological functioning across a dependency continuum, for a range of clinical conditions. It is commonly initiated within a complex biopsychosocial context and has wide-ranging sequelae for the child and family, and health and social care delivery. • The paper shows that the term technology dependent is generally portrayed in the literature in a problem-focused manner. • This term is increasingly redundant and does not serve the heterogenous group of children who are assisted by a myriad of technology and who adapt to, and function with, this assistance in numerous ways. More appropriate child-centred terminology will be determined within the TechChild project.


Asunto(s)
Familia , Apoyo Social , Niño , Atención a la Salud , Humanos , Tecnología
11.
Eur J Public Health ; 30(3): 449-455, 2020 06 01.
Artículo en Inglés | MEDLINE | ID: mdl-31642905

RESUMEN

BACKGROUND: Low childhood immunization rates in Europe are causing concern and have triggered several EU initiatives. However, these are counter-factual as they make immunization a stand-alone issue and cut across best practice in integrated child health services. They also focus unduly on 'anti-vax' pressures, generalize 'vaccine hesitancy' and overlook practical difficulties and uncertainties encountered by parents in real world situations about presenting children for immunization. Meanwhile European expertize in child health electronic record systems and relevant standards are ignored despite their being a potentially sound foundation ripe for enhancement. METHODS: Situation and literature reviews, and cohesion of two European research projects, led to shared investigation. As a result, two cross-sectoral expert workshops were held to consider digital health standards for harmonizing integrated preventive child health including immunization, and the work of other stakeholders such as the World Health Organisation and the European Centre for Disease Control. RESULTS: Progress in child health information models and digital health standards was assessed, areas needing further standards development identified and desirable steps towards innovation in service delivery and record keeping agreed. CONCLUSION: The European Commission, member states and child health stakeholders should take an integrated approach to child health with immunization as a component. Service delivery should be sensitive to parental concerns and challenges, and the way child- and family-centric data are recorded and used should be enhanced. Services should be enabled by the International Patient Summary and related electronic health record standards and linkages, and evaluated to assess most effective systems and practice.


Asunto(s)
Inmunización , Telemedicina , Niño , Europa (Continente) , Unión Europea , Humanos , Vacunación
12.
BMC Pediatr ; 20(1): 244, 2020 05 22.
Artículo en Inglés | MEDLINE | ID: mdl-32443974

RESUMEN

BACKGROUND: Population prevalence estimates by the World Health Organisation suggest that 1 in 160 children worldwide has an Autism Spectrum Disorder (ASD). Accessing respite care services for children with an ASD can often be a daunting and exhaustive process, with parents sometimes forced to access acute hospital services as an initial point of contact for respite care or in a crisis situation. To gain an in-depth understanding of accessing respite care for children with an ASD, from the perspectives of parents, a systematic review of the evidence on parent's experiences and views of respite care for children with an ASD at the acute and primary interface was undertaken. METHODS: Pubmed, Embase, CINAHL and PsycINFO were systematically searched. Studies identified as relevant based on predetermined eligibility criteria were selected for inclusion. The search strategy also targeted unpublished studies and grey literature. Qualitative data and qualitative components of mixed method studies that represented the experiences of parents accessing respite care for children with an ASD were eligible for inclusion. A meta-aggregative approach was used during data synthesis. RESULTS: Database searching elicited 430 records of which 291 studies remained after removal of duplicates. These 291 studies were screened for title and abstract by two reviewers resulting in 31 studies to be screened at full text and assessed for eligibility. Six studies met the inclusion criteria and a further additional study also met the inclusion criteria during a manual search. As a result, 7 studies were selected for the review as set out in Fig. 1. CONCLUSION: In the absence of appropriate services and defined pathways to support services such as respite care, overwhelmed parents and community providers of mental health resources may not be in a position to meet the specific needs of children with an ASD and their families which may be contributing to a direct increase in hospitalizations. This systematic review identified a number of barriers to respite care, of which the findings can be used to inform future service development and further research. Knowledge of parental experiences in caring for a child with an ASD is vital in addressing the need and type of respite care required for children with an ASD. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42018106629.


Asunto(s)
Trastorno del Espectro Autista , Trastorno del Espectro Autista/terapia , Niño , Humanos , Salud Mental , Padres , Atención Primaria de Salud , Cuidados Intermitentes
13.
BMC Pediatr ; 20(1): 71, 2020 02 15.
Artículo en Inglés | MEDLINE | ID: mdl-32061253

RESUMEN

BACKGROUND: The number of children requiring long-term home ventilation has consistently increased over the last 25 years. Given the growing population of children with complex care needs (CCNs), this was an important area of focus within the Models of Child Health Appraised (MOCHA) project, funded by the European Union (EU) under the Horizon 2020 programme. We examined the structures and processes of care in place for children with CCNs and identified key constituents for effective integration of care for these children at the community and acute care interface across 30 EU/ European Economic Area (EEA) countries. METHODS: This was a non-experimental descriptive study with an embedded qualitative element. Data were collected by a Country Agent in each of the 30 countries, a local expert in child health services. Data were analysed using descriptive statistics and a thematic analysis was undertaken of the free text data provided. RESULTS: A total of 27 surveys were returned from a possible 30 countries (90.0%) countries. One respondent indicated that their country does not have children on long-term ventilation (LTV) in the home, therefore, responses of 26 countries (86.7%) were analysed. None of the responding countries reported that they had all of the core components in place in their country. Three themes emerged from the free text provided: 'family preparedness for transitioning to home', 'coordinated pathway to specialist care' and 'legal and governance structures'. CONCLUSIONS: While the clinical care of children on LTV in the acute sector has received considerable attention, the results identify the need for an enhanced focus on the care required following discharge to the community setting. The results highlight the need for a commitment to supporting care delivery that acknowledges the complexity of contemporary child health issues and the context of the families that become their primary care givers.


Asunto(s)
Servicios de Salud del Niño , Servicios de Atención de Salud a Domicilio , Respiración Artificial , Cuidadores , Niño , Salud Infantil , Europa (Continente) , Humanos , Encuestas y Cuestionarios
14.
Br J Nurs ; 29(13): 762-769, 2020 Jul 09.
Artículo en Inglés | MEDLINE | ID: mdl-32649257

RESUMEN

BACKGROUND: Adolescents with long-term health conditions may be at risk of developing psychological comorbidities and adopting ineffective coping mechanisms if they are not adequately supported at home or school. AIM: To understand the strategies adolescents use when dealing with challenging health situations, and gain an in-depth understanding of the characteristics of their preferred care environment if they have unexpected health crises. DESIGN: The study used a concurrent mixed-methods design, with data gathered between January and May 2019. Descriptive and non-parametric tests were used to analyse quantitative and qualitative data. RESULTS: 'Problem-focused disengagement' was the most-often used coping strategy. The second and third most common strategies were 'problem-focused engagement' and 'emotion-focused engagement'. Finally, girls tended to adopt more negative coping strategies than boys. The analysis revealed that most adolescents preferred home over school as the care environment because these caring agents were close and available, knew how to care for them and had the resources to provide or access care, and listened and understood them. CONCLUSION: Adolescents adopted disengagement and negative coping strategies early in their attempts to cope with stressful events before adopting more positive strategies. This is alarming, especially as school health services are not sufficiently supportive of adolescents at times of stress and illness. Adolescents often perceive school providers as unavailable and lacking knowledge about their health needs.


Asunto(s)
Adaptación Psicológica , Enfermedad Crónica , Adolescente , Enfermedad Crónica/psicología , Femenino , Humanos , Masculino , Investigación Cualitativa
15.
Eur J Pediatr ; 178(6): 891-901, 2019 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-30937604

RESUMEN

Children dependent on long-term ventilation need the planning, provision and monitoring of complex services generally provided at home by professionals belonging to different care settings. The collaboration among professionals improves the efficiency and the continuity of care especially when treating children with complex care needs. In this paper, the Unified Modelling Language (UML) has been adopted to detect the variety of the patterns of collaboration as well as to represent and compare the different processes of care across the 30 EU/EEA countries of the MOCHA project.Conclusion: Half of the analysed countries have a multidisciplinary team with different degrees of team composition, influencing organisational features such as the development of the personalised plan as well as the provision of preventive and curative services. This approach provides indications on the efficiency in performing and organising the delivery of care in terms of family involvement, interactions among professionals and availability of ICT. What is known: • Children with CCNs require a coordination of efforts before and after discharge in a continuum of care delivery dependent on the level of integrated care solutions adopted at country level. What is new: •The adoption of a business process method contributes to perform a cross-country analysis highlighting the variability of team composition and its influence on the delivery of care. • This approach provides indications on the efficiency in performing and organising the delivery of care in terms of family involvement, interactions among professionals and availability of ICT.


Asunto(s)
Servicios de Salud del Niño/organización & administración , Servicios de Atención de Salud a Domicilio/organización & administración , Respiración Artificial/métodos , Cuidado de Transición/organización & administración , Niño , Enfermedad Crónica/terapia , Conducta Cooperativa , Atención a la Salud/organización & administración , Europa (Continente) , Humanos , Respiración Artificial/estadística & datos numéricos
16.
BMC Health Serv Res ; 19(1): 77, 2019 Jan 29.
Artículo en Inglés | MEDLINE | ID: mdl-30696446

RESUMEN

BACKGROUND: The need for improved research on ill health has been recognized internationally and locally in the United Arab Emirates (UAE). The UAE Nursing and Midwifery Council recently committed to enhancing the status and contributions of nursing in healthcare research across the UAE by establishing a National Committee for Research Development. This study using a Delphi method to identify research priorities from the perspective of nurses delivering frontline healthcare. METHODS: A two-phase Delphi design was implemented with 1032 nurses participating in phase one of the study and 1339 in phase two. RESULTS: The most important priority was patient safety and healthcare professionals' awareness of international patient safety goals (including staffing levels and shift length) and potential effects on patient safety. Other important priorities were infection control practices and management of communicable diseases. CONCLUSIONS: These priorities may inform nursing research programs to improve patient care and health outcomes in the UAE and similar contexts worldwide.


Asunto(s)
Prioridades en Salud/estadística & datos numéricos , Investigación sobre Servicios de Salud/métodos , Investigación en Enfermería , Técnica Delphi , Práctica Clínica Basada en la Evidencia , Femenino , Humanos , Relaciones Enfermero-Paciente , Atención al Paciente , Seguridad del Paciente , Admisión y Programación de Personal , Investigación , Emiratos Árabes Unidos
18.
J Clin Nurs ; 28(17-18): 3353-3367, 2019 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-31099444

RESUMEN

AIMS AND OBJECTIVES: To provide an operational definition of family-centred care as it applies to hospitalised children. The objective was to provide clarification of the concept by comprehensively analysing the evidence. BACKGROUND: Terms associated with family-centred care include partnership-in-care, negotiated care, parental participation/involvement in care, care-by-parent and child-centred care. The absence of a universally accepted definition contributes to its inconsistent implementation. DESIGN AND METHODS: Concept analysis is acknowledged as a form of inquiry to develop the knowledge base of nursing. Rodgers' evolutionary approach to concept analysis was used as a guiding framework. The systematic literature search yielded 30 theoretical papers; the results are outlined on a PRISMA flow diagram. RESULTS: Surrogate terms identified include partnership-in-care, negotiated care and parent participation. Parental participation in care, the development of respectful and trusting partnerships, information sharing and all family members as care recipients were identified as attributes to family-centred care. There is limited evidence that family-centred care enhances the child's, parents' and families' experience of hospitalisation and is associated with reduced anxiety for parents. CONCLUSION: There is a lack of attention to cultural and societal changes, which impact on those receiving and delivering care. While we know that family-centred care is widely endorsed and enhances well-being, there is a lack of empirical evidence about the impact on health outcomes for children. While children's nurses have been applying some elements of family-centred care to their clinical practice for decades, the concept continues to evolve. RELEVANCE TO CLINICAL PRACTICE: Further research examining the effects of family-centred care for children, their families, healthcare professionals and healthcare organisations reflecting cultural diversity and norms must be conducted. This research should include the effects of family-centred care on parents caring for their child in hospital, how family-centred care supports parents to make healthcare decisions and the outcomes of family-centred care for children and families.


Asunto(s)
Enfermería de la Familia/métodos , Padres/psicología , Relaciones Profesional-Familia , Adolescente , Niño , Niño Hospitalizado/psicología , Humanos
19.
J Clin Nurs ; 28(13-14): 2589-2598, 2019 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-30830707

RESUMEN

AIM AND OBJECTIVES: To develop a suite of metrics and indicators to measure the quality of children's nursing care processes. The objectives were to identify available metrics and indicators and to develop consensus on the metrics and indicators to be measured. BACKGROUND: The Office of Nursing and Midwifery Services Director, Health Service Executive, in Ireland established seven workstreams aligned to the following care areas: acute, older persons, children's, mental health, intellectual disability, public health nursing and midwifery. DESIGN: A comprehensive design included stakeholder consultation and a survey with embedded open-ended questions. METHODS: A two-round online Delphi survey was conducted to identify metrics to be measured in practice, followed by a two-round online Delphi survey to identify the associated indicators for these metrics. A face-to-face consensus meeting was held with key stakeholders to review the findings and build consensus on the final metrics and indicators for use. A STROBE checklist was completed. RESULTS: A suite of eight nursing quality care process metrics and 67 associated process indicators was developed for children's nursing. CONCLUSIONS: By creating a national suite of metrics and indicators, more robust measurement and monitoring of nursing care processes can be achieved. This will enable the provision of evidence for any local and/or national level changes to policy and practice to enhance care delivery. RELEVANCE TO CLINICAL PRACTICE: The roll-out of the metrics and indicators in clinical practice has commenced. This national suite of metrics and indicators will ensure that a robust system of measurement for improvement is in place to provide assurance to Directors of Nursing of the quality of nursing care being provided to children and their families. It supports the value of nursing sensitive data to inform change and improvement in healthcare delivery and to demonstrate the contribution of the nursing workforce to safe patient care.


Asunto(s)
Atención a la Salud/normas , Enfermeras Pediátricas/normas , Niño , Consenso , Técnica Delphi , Humanos , Irlanda , Encuestas y Cuestionarios
20.
J Clin Nurs ; 28(1-2): 80-88, 2019 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-30092619

RESUMEN

AIMS AND OBJECTIVES: To examine clinical handover practices in acute care services in Ireland. Objectives were to examine clinical handover practices between and within teams and between shifts, to identify resources and supports to enhance handover effectiveness and to identify barriers and facilitators of effective handover. BACKGROUND: Clinical handover is a high-risk activity, and ineffective handover practice constitutes a risk to patient safety. Evidence suggests that handover effectiveness is achieved through staff training and standardised handover protocols. DESIGN: The study design was qualitative-descriptive using inductive analysis. METHODS: The study involved a series of focus group discussions and interviews among a sample of healthcare practitioners recruited from 12 urban and regional acute hospitals in Ireland. A total of 116 healthcare professionals took part in 28 interviews and 13 focus group discussions. We analysed the data using the directed content analysis method. RESULTS: Data collection generated rich qualitative data, yielding five categories from which two broad themes emerged: "policy and practice" and "handover effectiveness." The themes and their associated categories indicate that there is limited organisational-level policy and limited explicit training in clinical handover, that medical and nursing handovers are separate activities with somewhat different purposes and different modes of execution, and that several factors in the acute care setting, including location, timing and documentation, act as either barriers or enablers to handover effectiveness. CONCLUSION: The evidence in the current study suggests that clinical handover merits increased level of prominence in hospital policies or operating procedures. Medical and nursing handover practices represent distinct activities in their content and execution that may be related to cultural and organisational factors. RELEVANCE TO CLINICAL PRACTICE: Achieving multidisciplinary team handover requires a change in embedded traditional practices. Several aspects of the clinical handover activities of nursing and medical staff appear to diverge from best-practice evidence.


Asunto(s)
Continuidad de la Atención al Paciente/organización & administración , Cuidados Críticos/organización & administración , Relaciones Interprofesionales , Pase de Guardia/organización & administración , Seguridad del Paciente/normas , Actitud del Personal de Salud , Comunicación , Femenino , Grupos Focales , Humanos , Irlanda , Masculino , Investigación Cualitativa
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