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1.
J Adv Nurs ; 77(2): 948-956, 2021 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-33222235

RESUMEN

AIM: The aim of this study was to explore which aspects of their role practice nurses perceive to be most influential and the strategies they employ to promote the MMR vaccine. DESIGN: Qualitative study employing in depth interviews. METHOD: Fifteen London based practice nurses, nine in 2014 and six in 2018, took part in semi-structured interviews that were audio recorded and transcribed verbatim. Qualitative content analysis was used to systematically manage, analyse, and identify themes. RESULTS: Analysis of data identified aspects of their role practice nurses perceived to be most influential (the themes) including: promoting vaccination, assisting parents' to make informed decisions, and provided insight into how they used specific strategies to achieve these in practice. These themes were consistent over both phases of the study. CONCLUSION: The findings provide an understanding of: (i) the practice nurses perceptions of the most important aspects of their role when promoting the measles, mumps, and rubella vaccine; and (ii) the strategies they implemented in practice to achieve these. The latter included assisting parents in their immunization decisions and was facilitated by practice nurses engaging with parents to provide relevant evidence to address parent queries, dispel misconceptions and tailor strategies to promote the measles, mumps, and rubella vaccine. IMPACT: This study addresses the paucity of literature available that specifically explores practice nurses' perceptions of their role concerning the measles, mumps, and rubella vaccine. The findings reveal how practice nurses promote the measles, mumps, and rubella vaccine by identifying strategies to enable parents to make informed decisions. At a time of an increasing incidence of measles, practice nurses have an important public health role in achieving herd immunity levels for measles, mumps, and rubella.


Asunto(s)
Sarampión , Paperas , Enfermeras y Enfermeros , Humanos , Inmunización , Lactante , Londres , Sarampión/prevención & control , Vacuna contra el Sarampión-Parotiditis-Rubéola , Paperas/prevención & control , Percepción , Vacunación
2.
J Pediatr ; 210: 112-117.e9, 2019 07.
Artículo en Inglés | MEDLINE | ID: mdl-31234979

RESUMEN

OBJECTIVE: To conduct a systematic review of the evidence to determine the impact of cystic fibrosis (CF) on unaffected siblings. STUDY DESIGN: We searched MEDLINE (Ovid interface, from 1946); EMBASE (Ovid interface, from 1946); CINAHL (EBSCO interface); Academic Search Complete (EBSCO interface); Psych Info (EBSCO interface); ProQuest Theses' and Dissertation's (ProQuest); British Index of Nursing (ProQuest); Web of Science (ISI, Web of Knowledge portal); PubMed (PubMed NCBI); BASE (Bielefeld Academic Research Engine); Scopus; EThOS (e-theses online service); Open Grey; and Cochrane Library. Contents pages of the Journal of Cystic Fibrosis, June 2002-April 2017 were hand searched to identify further eligible studies. Reference lists of eligible articles and relevant review papers were screened. Inclusion criteria were full studies published after 1989 in English focusing on the impact of cystic fibrosis on unaffected siblings. RESULTS: In total, 13 papers, 4 PhD theses and 1 MSc thesis were included in the review. Four themes were identified; family functioning, psychosocial impact, knowledge of CF, and condition-specific differences. CONCLUSIONS: Most studies are old and may not accurately represent the impact of CF on unaffected siblings following changes to health care provision including newborn bloodspot screening and the advent of CF transmembrane regulator modulator therapies. Further work is needed directly with siblings rather than using mothers as proxies to determine effect of age, sex, and disease trajectory on unaffected siblings' experiences.


Asunto(s)
Fibrosis Quística , Hermanos , Tamización de Portadores Genéticos , Culpa , Conocimientos, Actitudes y Práctica en Salud , Humanos , Satisfacción Personal , Autoimagen , Relaciones entre Hermanos
3.
Eur Respir J ; 50(5)2017 11.
Artículo en Inglés | MEDLINE | ID: mdl-29122914

RESUMEN

With the advent of novel designer molecules for cystic fibrosis (CF) treatment, there is huge need for early-life clinical trial outcomes, such as infant lung function (ILF). We investigated the degree and tracking of ILF abnormality during the first 2 years of life in CF newborn screened infants.Forced expiratory volume in 0.5 s (FEV0.5), lung clearance index (LCI) and plethysmographic functional residual capacity were measured at ∼3 months, 1 year and 2 years in 62 infants with CF and 34 controls.By 2 years there was no significant difference in FEV0.5 z-score between CF and controls, whereas mean LCI z-score was 0.81 (95% CI 0.45-1.17) higher in CF. However, there was no significant association between LCI z-score at 2 years with either 3-month or 1-year results. Despite minimal average group changes in any ILF outcome during the second year of life, marked within-subject changes occurred. No child had abnormal LCI or FEV0.5 on all test occasions, precluding the ability to identify "high-risk" infants in early life.In conclusion, changes in lung function are mild and transient during the first 2 years of life in newborn screened infants with CF when managed according to a standardised UK treatment protocol. Their potential role in tracking disease to later childhood will be ascertained by ongoing follow-up.


Asunto(s)
Fibrosis Quística/diagnóstico , Fibrosis Quística/fisiopatología , Pulmón/fisiopatología , Tamizaje Neonatal , Estudios de Casos y Controles , Femenino , Volumen Espiratorio Forzado , Capacidad Residual Funcional , Humanos , Lactante , Recién Nacido , Masculino , Análisis de Regresión , Reino Unido
4.
Cochrane Database Syst Rev ; 9: CD005186, 2017 09 01.
Artículo en Inglés | MEDLINE | ID: mdl-28862335

RESUMEN

BACKGROUND: Health care-associated infection is a major cause of morbidity and mortality. Hand hygiene is regarded as an effective preventive measure. This is an update of a previously published review. OBJECTIVES: To assess the short- and long-term success of strategies to improve compliance to recommendations for hand hygiene, and to determine whether an increase in hand hygiene compliance can reduce rates of health care-associated infection. SEARCH METHODS: We conducted electronic searches of the Cochrane Register of Controlled Trials, PubMed, Embase, and CINAHL. We conducted the searches from November 2009 to October 2016. SELECTION CRITERIA: We included randomised trials, non-randomised trials, controlled before-after studies, and interrupted time series analyses (ITS) that evaluated any intervention to improve compliance with hand hygiene using soap and water or alcohol-based hand rub (ABHR), or both. DATA COLLECTION AND ANALYSIS: Two review authors independently screened citations for inclusion, extracted data, and assessed risks of bias for each included study. Meta-analysis was not possible, as there was substantial heterogeneity across studies. We assessed the certainty of evidence using the GRADE approach and present the results narratively in a 'Summary of findings' table. MAIN RESULTS: This review includes 26 studies: 14 randomised trials, two non-randomised trials and 10 ITS studies. Most studies were conducted in hospitals or long-term care facilities in different countries, and collected data from a variety of healthcare workers. Fourteen studies assessed the success of different combinations of strategies recommended by the World Health Organization (WHO) to improve hand hygiene compliance. Strategies consisted of the following: increasing the availability of ABHR, different types of education for staff, reminders (written and verbal), different types of performance feedback, administrative support, and staff involvement. Six studies assessed different types of performance feedback, two studies evaluated education, three studies evaluated cues such as signs or scent, and one study assessed placement of ABHR. Observed hand hygiene compliance was measured in all but three studies which reported product usage. Eight studies also reported either infection or colonisation rates. All studies had two or more sources of high or unclear risks of bias, most often associated with blinding or independence of the intervention.Multimodal interventions that include some but not all strategies recommended in the WHO guidelines may slightly improve hand hygiene compliance (five studies; 56 centres) and may slightly reduce infection rates (three studies; 34 centres), low certainty of evidence for both outcomes.Multimodal interventions that include all strategies recommended in the WHO guidelines may slightly reduce colonisation rates (one study; 167 centres; low certainty of evidence). It is unclear whether the intervention improves hand hygiene compliance (five studies; 184 centres) or reduces infection (two studies; 16 centres) because the certainty of this evidence is very low.Multimodal interventions that contain all strategies recommended in the WHO guidelines plus additional strategies may slightly improve hand hygiene compliance (six studies; 15 centres; low certainty of evidence). It is unclear whether this intervention reduces infection rates (one study; one centre; very low certainty of evidence).Performance feedback may improve hand hygiene compliance (six studies; 21 centres; low certainty of evidence). This intervention probably slightly reduces infection (one study; one centre) and colonisation rates (one study; one centre) based on moderate certainty of evidence.Education may improve hand hygiene compliance (two studies; two centres), low certainty of evidence.Cues such as signs or scent may slightly improve hand hygiene compliance (three studies; three centres), low certainty of evidence.Placement of ABHR close to point of use probably slightly improves hand hygiene compliance (one study; one centre), moderate certainty of evidence. AUTHORS' CONCLUSIONS: With the identified variability in certainty of evidence, interventions, and methods, there remains an urgent need to undertake methodologically robust research to explore the effectiveness of multimodal versus simpler interventions to increase hand hygiene compliance, and to identify which components of multimodal interventions or combinations of strategies are most effective in a particular context.


Asunto(s)
Infección Hospitalaria/prevención & control , Desinfección de las Manos/normas , Personal de Salud , Transmisión de Enfermedad Infecciosa de Profesional a Paciente/prevención & control , Clostridioides difficile , Infecciones por Clostridium/prevención & control , Humanos , Análisis de Series de Tiempo Interrumpido , Staphylococcus aureus Resistente a Meticilina , Ensayos Clínicos Controlados Aleatorios como Asunto , Infecciones Estafilocócicas/prevención & control
5.
J Genet Couns ; 25(6): 1215-1226, 2016 12.
Artículo en Inglés | MEDLINE | ID: mdl-27098418

RESUMEN

The clinical advantages of the newborn screening programme (NBS) in the UK are well described in the literature. However, there has been little exploration of the psychosocial impact on the family. This study followed the principles of grounded theory to explore parents' experiences of receiving the initial positive NBS result for their child with cystic fibrosis (CF) or sickle cell disease (SCD). Semi-structured, qualitative interviews were conducted with 22 parents (12 mothers and 10 fathers) whose children had been diagnosed with CF or SCD via NBS and were under the age of 1 year at the time of interview. The main themes that arose from the data were; parents previous knowledge of the condition and the NBS programme, the method of delivery and parental reactions to the result, sharing the results with others, the impact on parental relationships and support strategies. Study conclusions indicate that most parents thought initial positive NBS results should be delivered by a health professional with condition specific knowledge, preferably with both parents present. Genetic counselling needs to include a focus on the impact of NBS results on parental relationships. Careful consideration needs to be given to strategies to support parents of babies who have positive NBS results both in terms of the psychological health and to assist them in sharing the diagnosis.


Asunto(s)
Anemia de Células Falciformes/diagnóstico , Fibrosis Quística/diagnóstico , Asesoramiento Genético , Padres/psicología , Adaptación Psicológica , Adulto , Anemia de Células Falciformes/genética , Fibrosis Quística/genética , Femenino , Pruebas Genéticas , Conocimientos, Actitudes y Práctica en Salud , Humanos , Lactante , Recién Nacido , Masculino , Tamizaje Neonatal , Padres/educación , Encuestas y Cuestionarios
6.
Thorax ; 69(10): 910-7, 2014 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-24072358

RESUMEN

RATIONALE: Newborn screening (NBS) for cystic fibrosis (CF) allows early intervention. Design of randomised controlled trials (RCT) is currently impeded by uncertainty regarding evolution of lung function, an important trial end point in such infants. OBJECTIVE: To assess changes in pulmonary function during the first year of life in CF NBS infants. METHODS: Observational longitudinal study. CF NBS infants and healthy controls were recruited between 2009 and 2011. Lung Clearance Index (LCI), plethysmographic lung volume (plethysmographic functional residual capacity (FRCpleth)) and forced expired volume (FEV0.5) were measured at 3 months and 1 year of age. MAIN RESULTS: Paired measurements were obtained from 72 CF infants and 44 controls. At 3 months, CF infants had significantly worse lung function for all tests. FEV0.5 improved significantly (0.59 (95% CI 0.18 to 0.99) z-scores; p<0.01) in CF infants between 3 months and 1 year, and by 1 year, FEV0.5 was only 0.52 (0.89 to 0.15) z-scores less than in controls. LCI and FRCpleth remained stable throughout the first year of life, being on average 0.8 z-scores higher in infants with CF. Pulmonary function at 1 year was predicted by that at 3 months. Among the 45 CF infants with entirely normal LCI and FEV0.5 at 3 months, 80% remained so at 1 year, while 74% of those with early abnormalities remained abnormal at 1 year. CONCLUSIONS: This is the first study reporting improvements in FEV0.5 over time in stable NBS CF infants treated with standard therapy. Milder changes in lung function occurred by 1 year than previously reported. Lung function at 3 months predicts a high-risk group, who should be considered for intensification of treatment and enrolment into RCTs.


Asunto(s)
Fibrosis Quística/fisiopatología , Flujo Espiratorio Medio Máximo/fisiología , Tamizaje Neonatal/métodos , Fibrosis Quística/diagnóstico , Fibrosis Quística/epidemiología , Progresión de la Enfermedad , Femenino , Estudios de Seguimiento , Edad Gestacional , Humanos , Lactante , Recién Nacido , Mediciones del Volumen Pulmonar , Masculino , Valor Predictivo de las Pruebas , Prevalencia , Pruebas de Función Respiratoria , Estudios Retrospectivos , Factores de Tiempo , Reino Unido/epidemiología
7.
Children (Basel) ; 11(5)2024 Apr 24.
Artículo en Inglés | MEDLINE | ID: mdl-38790502

RESUMEN

Psychosocial consequences of false-positive results following newborn bloodspot screening have been identified as a potential risk to this highly successful public health initiative. A scoping review was undertaken in October 2023 underpinned by the Arksey and O'Malley framework. Twenty-four papers were included in the review, many of which focused on cystic fibrosis. The results indicated that impact of false-positive results is variable; some studies suggest false-positive results have the potential to result in negative sequelae including increased stress and changes in parental perceptions of their child, while others suggest these impacts are transient and, in some instances, may even lead to positive outcomes. Further evidence is needed to ensure the representation of other conditions included in newborn bloodspot screening and to support strategies to overcome potential negative sequela.

8.
Int J Neonatal Screen ; 10(1)2024 Feb 14.
Artículo en Inglés | MEDLINE | ID: mdl-38390977

RESUMEN

The project aimed to gather, analyse, and compare the views of stakeholders about the proposed UK cystic fibrosis (CF) screening protocol incorporating next generation sequencing (NGS). The study design was based on principles of Q-methodology with a willingness-to-pay exercise. Participants were recruited from 12 CF centres in the UK. The study contained twenty-eight adults who have experience with CF (parents of children with CF (n = 21), including parents of children with CF transmembrane conductance regulator (CFTR)-related metabolic syndrome (CRMS)/CF screen positive-inconclusive diagnosis (CFSPID), an uncertain outcome (n = 3), and adults with CF (n = 4)), and nine health professionals involved in caring for children with CF. Parents and health professionals expressed a preference for a sensitive approach to NGS. This was influenced by the importance participants placed on not missing any children with CF via screening and the balance of harm between missing a case of CF compared to picking up more children with an uncertain outcome (CRMS/CFSPID). Given the preference for a sensitive approach, the need for adequate explanations about potential outcomes including uncertainty (CFSPID) at the time of screening was emphasized. More research is needed to inform definitive guidelines for managing children with an uncertain outcome following CF screening.

9.
Int J Neonatal Screen ; 10(2)2024 Apr 08.
Artículo en Inglés | MEDLINE | ID: mdl-38651396

RESUMEN

There is increasing interest in using extended genetic sequencing (EGS) in newborn screening (NBS) for cystic fibrosis (CF). How this is implemented will change the number of children being given an uncertain outcome of CRMS/CFSPID (cystic fibrosis transmembrane conductance regulator (CFTR)-related metabolic syndrome/CF Screen Positive Inconclusive Diagnosis), probable carrier results, and the number of missed CF diagnoses. An international survey of CF health professionals was used to gather views on two approaches to EGS-specific (may reduce detection of CRMS/CFSID but miss some CF cases) versus sensitive (may increase detection of CRMS/CFSPID but avoid missing more CF cases). Health professionals acknowledged the anxiety caused to parents (and health professionals) from the uncertainty surrounding the prognosis and management of CRMS/CFSPID. However, most preferred the sensitive approach, as overall, identifying more cases of CRMS/CFSPID was viewed as less physically and psychologically damaging than a missed case of CF. The importance of early diagnosis and treatment for CF to ensure better health outcomes and reducing diagnostic odysseys for parents were highlighted. A potential benefit to identifying more children with CRMS/CFSPID included increasing knowledge to obtain a better understanding of how these children should best be managed in the future.

10.
Ultrasound ; 31(3): 164-175, 2023 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-37538965

RESUMEN

Introduction: Written reports are often the sole form of communication from diagnostic imaging. Reports are increasingly being accessed by patients through electronic records. Experiencing medical terminology can be confusing and lead to miscommunication, a decrease in involvement and increased anxiety for patients. Methods: This systematic review was designed to include predefined study selection criteria and was registered prospectively on PROSPERO (CRD42020221734). MEDLINE, CINAHL, Academic Search Complete (EBSCOhost), EMBASE, Scopus and EThOS were searched to identify articles meeting the inclusion criteria. Studies were assessed against the Mixed-Methods Appraisal Tool version 2018 for quality. A segregated approach was used to synthesise data. A thematic synthesis of the qualitative data and a narrative review of the quantitative data were performed, and findings of both syntheses were then integrated. Findings: Twelve articles reporting 13 studies were included. This review found that patients' experiences of imaging reports included positive and negative aspects. The study identified two main themes encompassing both qualitative and quantitative findings. Patients reported their experiences regarding their understanding of reports and self-management. Discussion: Patient understanding of imaging reports is multi factorial including medical terminology, communication aids and errors. Self-management through direct access is important to patients. While receiving bad news is a concern, responsibility for accessing this is accepted. Conclusion: A patient-centred approach to writing imaging reports may help to improve the quality of service, patient experience and wider health outcomes.

11.
Trials ; 24(1): 66, 2023 Jan 28.
Artículo en Inglés | MEDLINE | ID: mdl-36709306

RESUMEN

BACKGROUND: For children and young people with eye and vision conditions, research is essential to advancing evidence-based recommendations in diagnosis, prevention, treatments and cures. Patient 'experience' reflects a key measure of quality in health care (Department of Health. High Quality Care for All: NHS Next Stage Review Final Report: The Stationery Office (2008)); research participant 'experiences' are equally important. Therefore, in order to achieve child-centred, high-quality paediatric ophthalmic research, we need to understand participation experiences. We conducted a systematic review of existing literature; our primary outcome was to understand what children and young people, parents and research staff perceive to support or hinder positive paediatric eye and vision research experiences. Our secondary outcomes explored whether any adverse or positive effects were perceived to be related to participation experiences, and if any interventions to improve paediatric ophthalmic research experiences had previously been developed or used. METHODS: We searched (from inception to November 2018, updated July 2020) in MEDLINE, Embase, CINAHL, Web of Science, NICE evidence and The Cochrane Library (CDSR and CENTRAL), key journals (by hand), grey literature databases and Google Scholar; looking for evidence from the perspectives of children, young people, parents and staff with experience of paediatric ophthalmic research. The National Institute for Health Research (NIHR) Participant in Research Experience Survey (PRES) (National Institute for Health Research. Research Participant Experience Survey Report 2018-19 (2019); National Institute for Health Research. Optimising the Participant in Research Experience Checklist (2019)) identified 'five domains' pivotal to shaping positive research experiences; we used these domains as an 'a priori' framework to conduct a 'best fit' synthesis (Carroll et al., BMC Med Res Methodol. 11:29, 2011; Carroll et al., BMC Med Res Methodol. 13:37, 2013). RESULTS: Our search yielded 13,020 papers; two studies were eligible. These evaluated research experiences from the perspectives of parents and staff; the perspectives of children and young people themselves were not collected. No studies were identified addressing our secondary objectives. Synthesis confirmed the experiences of parents were shaped by staff characteristics, information provision, trial organisation and personal motivations, concurring with the 'PRES domains' (National Institute for Health Research. Optimising the Participant in Research Experience Checklist (2019)) and generating additional dimensions to participation motivations and the physical and emotional costs of study organisation. CONCLUSIONS: The evidence base is limited and importantly omits the voices of children and young people. Further research, involving children and young people, is necessary to better understand the research experiences of this population, and so inform quality improvements for paediatric ophthalmic research care and outcomes. TRIAL REGISTRATION: Review registered with PROSPERO, International prospective register of systematic reviews: CRD42018117984. Registered on 11 December 2018.


Asunto(s)
Atención a la Salud , Motivación , Adolescente , Niño , Humanos , Instituciones de Salud
12.
Thorax ; 67(10): 874-81, 2012 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-22752198

RESUMEN

BACKGROUND: Long-term benefits of newborn screening (NBS) for cystic fibrosis (CF) have been established with respect to nutritional status, but effects on pulmonary health remain unclear. HYPOTHESIS: With early diagnosis and commencement of standardised treatment, lung function at ∼3 months of age is normal in NBS infants with CF. METHODS: Lung clearance index (LCI) and functional residual capacity (FRC) using multiple breath washout (MBW), plethysmographic (pleth) FRC and forced expirations from raised lung volumes were measured in 71 infants with CF (participants in the London CF Collaboration) and 54 contemporaneous healthy controls age ∼3 months. RESULTS: Compared with controls, and after adjustment for body size and age, LCI, FRC(MBW) and FRC(pleth) were significantly higher in infants with CF (mean difference (95% CI): 0.5 (0.1 to 0.9), p=0.02; 0.4 (0.1 to 0.7), p=0.02 and 0.9 (0.4 to 1.3), p<0.001, z-scores, respectively), while forced expiratory volume (FEV(0.5)) and flows (FEF(25-75)) were significantly lower (-0.9 (-1.3 to -0.6), p<0.001 and -0.7 (-1.1 to -0.2), p=0.004, z-scores, respectively). 21% (15/70) of infants with CF had an elevated LCI (>1.96 z-scores) and 25% (17/68) an abnormally low FEV(0.5) (below -1.96 z-scores). While only eight infants with CF had abnormalities of LCI and FEV(0.5), using both techniques identified abnormalities in 35% (24/68). Hyperinflation (FRC(pleth) >1.96 z-scores) was identified in 18% (10/56) of infants with CF and was significantly correlated with diminished FEF(25-75) (r=-0.43, p<0.001) but not with LCI or FEV(0.5). CONCLUSION: Despite early diagnosis of CF by NBS and protocol-driven treatment in specialist centres, abnormal lung function, with increased ventilation inhomogeneity and hyperinflation and diminished airway function, is evident in many infants with CF diagnosed through NBS by 3 months of age.


Asunto(s)
Fibrosis Quística/diagnóstico , Fibrosis Quística/fisiopatología , Tamizaje Neonatal , Antropometría , Estudios de Casos y Controles , Distribución de Chi-Cuadrado , Diagnóstico Precoz , Femenino , Humanos , Lactante , Recién Nacido , Modelos Lineales , Londres , Estudios Longitudinales , Masculino , Pletismografía , Pronóstico , Pruebas de Función Respiratoria
13.
Int J Neonatal Screen ; 8(1)2022 Jan 11.
Artículo en Inglés | MEDLINE | ID: mdl-35076474

RESUMEN

The main aim of the present study was to explore health professionals' reported experiences and approaches to managing children who receive a designation of cystic fibrosis transmembrane conductance regulator-related metabolic syndrome/cystic fibrosis screen positive inconclusive diagnosis following a positive NBS result for cystic fibrosis. An online questionnaire was distributed via Qualtrics Survey Software and circulated to a purposive, international sample of health professionals involved in managing children with this designation. In total, 101 clinicians completed the online survey: 39 from the US, six from Canada, and 56 from Europe (including the UK). Results indicated that while respondents reported minor deviations in practice, they were cognizant of recommendations in the updated guidance and for the most part, attempted to implement these into practice consistently internationally. Where variation was reported, the purpose of this appeared to be to enable clinicians to respond to either clinical assessments or parental anxiety in order to improve outcomes for the child and family. Further research is needed to determine if these findings are reflective of both a wider audience of clinicians and actual (rather than reported) practice.

14.
Int J Neonatal Screen ; 8(1)2022 Mar 14.
Artículo en Inglés | MEDLINE | ID: mdl-35323198

RESUMEN

Although the communication pathways of Newborn Bloodspot Screening (NBS) are a delicate task, these pathways vary across different conditions and are often not evidence-based. The ReSPoND interventions were co-designed by healthcare professionals alongside parents who had received a positive NBS result for their child. To calculate the cost of these co-designed strategies and the existing communication pathways, we interviewed 71 members of the clinical and laboratory staff of the 13 English NBS laboratories in the English National Health Service. Therefore, a scenario analysis was used to compare the cost of the existing communication pathways to the co-designed strategies delivered by (i) home-visits and (ii) telecommunications. On average, the existing communication pathway cost £447.08 per infant (range: £237.12 to £628.51) or £234,872.75 (£3635.99 to £1,932,986.23) nationally. Implementing the new interventions relying on home-visits exclusively would cost on average £521.62 (£312.84 to £646.39) per infant and £297,816.03 (£4506.37 to £2,550,284.64) nationally, or £447.19 (£235.79 to £552.03) and £231,342.40 (£3923.7 to £1,922,192.22) if implemented via teleconsultations, respectively. The new strategies delivered are not likely to require additional resources compared with current practice. Further research is needed to investigate whether this investment represents good value for money for the NHS budget.

15.
J Particip Med ; 14(1): e33485, 2022 Jul 27.
Artículo en Inglés | MEDLINE | ID: mdl-35896023

RESUMEN

BACKGROUND: Each year in England, almost 10,000 parents are informed of their child's positive newborn bloodspot screening (NBS) results. This occurs approximately 2 to 8 weeks after birth depending on the condition. Communication of positive NBS results is a subtle and skillful task, demanding thought, preparation, and evidence to minimize potentially harmful negative sequelae. Evidence of variability in the content and the way the result is currently communicated has the potential to lead to increased parental anxiety and distress. OBJECTIVE: This study focused on the development of co-designed interventions to improve the experiences of parents receiving positive NBS results for their children and enhance communication between health care professionals and parents. METHODS: An experience-based co-design approach was used to explore experiences and co-design solutions with 17 health professionals employed in 3 National Health Service Trusts in England and 21 parents (13/21, 62% mothers and 8/21, 38% fathers) of 14 children recruited from the same 3 National Health Service Trusts. Experiences with existing services were gathered via semistructured interviews with health professionals. Filmed narrative interviews with parents were developed into a composite film. The co-design process identified priorities for improving communication of positive NBS results through separate parent and health professional feedback events followed by joint feedback events. In total, 4 interventions were then co-designed between the participants through a web-based platform. RESULTS: Parents and health professionals provided positive feedback regarding the process of gathering experiences and identifying priorities. Themes identified from the parent interviews included impact of initial communication, parental reactions, attending the first clinic appointment, impact of health professionals' communication strategies and skills, impact of diagnosis on family and friends, improvements to the communication of positive NBS results, and parents' views on NBS. Themes identified from the health professional interviews included communication between health professionals, process of communicating with the family, parent- and family-centered care, and availability of resources and challenges to effective communication. In response to these themes, 4 interventions were co-designed: changes to the NBS card; standardized laboratory proformas; standardized communication checklists; and an email or letter for providing reliable, up-to-date, condition-specific information for parents following the communication of positive NBS results. CONCLUSIONS: Parents and health professionals were able to successfully work together to identify priorities and develop co-designed interventions to improve communication of positive NBS results to parents. The resulting co-designed interventions address communication at different stages of the communication pathway to improve the experiences of parents receiving positive NBS results for their children. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1186/s40814-019-0487-5.

16.
Nurs Child Young People ; 33(5): 25-31, 2021 Sep 02.
Artículo en Inglés | MEDLINE | ID: mdl-33719231

RESUMEN

The extent of parental knowledge is an important factor in the care of children with congenital heart disease (CHD), with research recommending that to achieve optimal care, parents should be appropriately educated in the condition. This literature review aimed to identify the factors that influence parents' knowledge of their child's CHD. Relevant databases were searched for literature using appropriate search terms. Thematic analysis identified four common themes in six articles: the educational technique used, the parents' educational background, effective communication and the source of information. The findings identified a need for improved delivery and communication of parental education.


Asunto(s)
Cardiopatías Congénitas , Padres , Niño , Humanos , Padres/educación
17.
Int J Neonatal Screen ; 7(4)2021 Oct 13.
Artículo en Inglés | MEDLINE | ID: mdl-34698074

RESUMEN

The objective of this research was to explore current communication practices for positive newborn bloodspot screening results for congenital hypothyroidism from the newborn bloodspot screening laboratory to clinicians and then families, in order to (i) understand how the pathway is implemented in practice, (ii) highlight regional differences and (iii) identify barriers and facilitators. A qualitative exploratory design was employed using semi-structured interviews across 13 newborn bloodspot screening laboratories in England. Participants included 35 clinicians and 17 NBS laboratory staff across the 13 laboratories and 18 members of relevant clinical teams. Findings illuminated variations in how positive newborn bloodspot screening results for congenital hypothyroidism are communicated in practice. This included regional variations due to historical arrangements and local resources. Contacting the appropriate person could be challenging and obtaining feedback from clinical teams to the laboratory after the child has been seen could be time consuming for those involved. Standardised communication model(s) for positive newborn bloodspot screening results for congenital hypothyroidism, which include named contact individuals, defined pathways of care and processes for feeding back to laboratories, may help to ensure the process is less labour intensive, particularly from a laboratory perspective.

18.
Nurse Educ Today ; 98: 104749, 2021 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-33545557

RESUMEN

BACKGROUND: Aseptic technique is a key skill undertaken every day by large numbers of nurses. However, there is relatively little empirical evidence to underpin practice. Furthermore, it is not clear to what extent it should be considered a single task or a set of principles to be applied differentially depending upon the situation and how individual nurses make this decision. OBJECTIVE: This study explored nurses' experiences of continuing professional education (CPE) in relation to aseptic technique. DESIGN: A national survey was undertaken throughout the United Kingdom. Responses were subjected to inductive quantitative content analysis. PARTICIPANTS: Participants were recruited via an electronic link placed on the website of a major nursing organisation. RESULTS: 941 nurses responded. 253 (26.9%) were satisfied with arrangements for continuing professional education. Satisfaction was associated with a perception of good support from employers, sound preparation before qualifying and practising aseptic technique regularly. 311 (33%) were dissatisfied. Reasons included witnessing unwarranted variations in practice (n = 55, 5.8%), witnessing suboptimal practice requiring correction (65, 6.9%), a perception that standards had fallen through a decline in pre-registration preparation (n = 109, 11.6%) and opportunities for updating (n = 124, 13.2%). Some employers had introduced training in conjunction with organisation-wide change in practice. In other cases participants reported receiving updates when required to perform a new procedure, when moving between clinical specialities or changing employer. Train-the-trainer (cascade) teaching was used in formal and informal arrangements for updating. CONCLUSION: This study provides a springboard for exploring arrangements for updating and assessing nurses' competence to undertake aseptic technique. Health providers need to evaluate what is currently provided and address gaps in provision. There is clear evidence that the current system does not meet the needs of many nurses.


Asunto(s)
Educación Profesional , Enfermeras y Enfermeros , Educación Continua en Enfermería , Humanos , Control de Infecciones , Satisfacción Personal , Reino Unido
19.
BMJ Open ; 11(8): e050773, 2021 08 27.
Artículo en Inglés | MEDLINE | ID: mdl-34452966

RESUMEN

OBJECTIVE: To implement and evaluate co-designed interventions to improve communication of positive newborn bloodspot screening results and make recommendations for future research and practice. DESIGN: A process evaluation underpinned by Normalisation Process Theory. SETTING: Three National Health Service provider organisations in England. PARTICIPANTS: Twenty-four healthcare professionals (7 newborn screening laboratory staff and 24 clinicians) and 18 parents were interviewed. INTERVENTIONS: Three co-designed interventions were implemented in practice: standardised laboratory proformas, communication checklists and an email/letter template. PRIMARY OUTCOME MEASURES: Acceptability and feasibility of the co-designed interventions. RESULTS: Auditing the implementation of these interventions revealed between 58%-76% of the items on the laboratory proforma and 43%-80% of items on the communication checklists were completed. Interviews with healthcare professionals who had used the interventions in practice provided positive feedback in relation to the purpose of the interventions and the ease of completion both of which were viewed as enhancing communication of positive newborn bloodspot screening results. Interviews with parents highlighted the perceived benefit of the co-designed interventions in terms of consistency, pacing and tailoring of information as well as providing reliable information to families following communication of the positive newborn bloodspot screening result. The process evaluation illuminated organisational and contextual barriers during implementation of the co-designed interventions in practice. CONCLUSION: Variations in communication practices for positive newborn bloodspot screening results continue to exist. The co-designed interventions could help to standardise communication of positive newborn screening results from laboratories to clinicians and from clinicians to parents which in turn could improve parents' experience of receiving a positive newborn bloodspot screening result. Implementation highlighted some organisational and contextual barriers to effective adoption of the co-designed interventions in practice. TRIAL REGISTRATION NUMBER: ISRCTN15330120.


Asunto(s)
Tamizaje Neonatal , Medicina Estatal , Comunicación , Personal de Salud , Humanos , Recién Nacido , Padres
20.
Cochrane Database Syst Rev ; (9): CD005186, 2010 Sep 08.
Artículo en Inglés | MEDLINE | ID: mdl-20824842

RESUMEN

BACKGROUND: Health care-associated infection is a major cause of morbidity and mortality. Hand hygiene is regarded as an effective preventive measure. OBJECTIVES: To update the review done in 2007, to assess the short and longer-term success of strategies to improve hand hygiene compliance and to determine whether a sustained increase in hand hygiene compliance can reduce rates of health care-associated infection. SEARCH STRATEGY: We conducted electronic searches of: the Cochrane Central Register of Controlled Trials; the Cochrane Effective Practice and Organisation of Care Group specialised register of trials; MEDLINE; PubMed; EMBASE; CINAHL; and the BNI. Originally searched to July 2006, for the update databases were searched from August 2006 until November 2009. SELECTION CRITERIA: Randomised controlled trials, controlled clinical trials, controlled before and after studies, and interrupted time series analyses meeting explicit entry and quality criteria used by the Cochrane Effective Practice and Organisation of Care Group were eligible for inclusion. Studies reporting indicators of hand hygiene compliance and proxy indicators such as product use were considered. Self-reported data were not considered a valid measure of compliance. Studies to promote hand hygiene compliance as part of a care bundle approach were included, providing data relating specifically to hand hygiene were presented separately. Studies were excluded if hand hygiene was assessed in simulations, non-clinical settings or the operating theatre setting. DATA COLLECTION AND ANALYSIS: Two reviewers independently extracted data and assessed data quality. MAIN RESULTS: Four studies met the criteria for the review: two from the original review and two from the update. Two studies evaluated simple education initiatives, one using a randomized clinical trial design and the other a controlled before and after design. Both measured hand hygiene compliance by direct observation. The other two studies were both interrupted times series studies. One study presented three separate interventions within the same paper: simple substitutions of product and two multifaceted campaigns, one of which included involving practitioners in making decisions about choice of hand hygiene products and the components of the hand hygiene program. The other study also presented two separate multifaceted campaigns, one of which involved application of social marketing theory. In these two studies follow-up data collection continued beyond twelve months, and a proxy measure of hand hygiene compliance (product use) was recorded. Microbiological data were recorded in one study. Hand hygiene compliance increased for one of the studies where it was measured by direct observation, but the results from the other study were not conclusive. Product use increased in the two studies in which it was reported, with inconsistent results reported for one initiative. MRSA incidence decreased in the one study reporting microbiological data. AUTHORS' CONCLUSIONS: The quality of intervention studies intended to increase hand hygiene compliance remains disappointing. Although multifaceted campaigns with social marketing or staff involvement appear to have an effect, there is insufficient evidence to draw a firm conclusion. There remains an urgent need to undertake methodologically robust research to explore the effectiveness of soundly designed and implemented interventions to increase hand hygiene compliance.


Asunto(s)
Infección Hospitalaria/prevención & control , Desinfección de las Manos/normas , Personal de Salud , Transmisión de Enfermedad Infecciosa de Profesional a Paciente/prevención & control , Clostridioides difficile , Infecciones por Clostridium/prevención & control , Humanos , Staphylococcus aureus Resistente a Meticilina , Infecciones Estafilocócicas/prevención & control
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