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1.
Child Care Health Dev ; 50(4): e13292, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-38927003

RESUMEN

BACKGROUND: Non-invasive ventilation (NIV) for sleep-disordered breathing (SDB) in children and young people (CYP) can result in multiple health outcomes; however, adherence to NIV can be challenging. Suboptimally treated SDB may increase the risk of adverse consequences. Placing children's and parents' goals at the core of their SDB treatment may support adherence to NIV. To identify these health outcomes, it is necessary to gain a greater understanding of CYP's experiences of using NIV, whether they perceive any benefits from NIV use, as well as the outcomes that their parents and NIV staff identify as important. METHODS: Semi-structured qualitative interviews were conducted with nine CYP (aged 4-16 + years), 13 parents and nine healthcare professionals (HCPs); verbatim transcripts were analysed using Framework Analysis. RESULTS: CYP predominantly reported an improvement in levels of energy, focus and ability to concentrate whereas parents also identified outcomes of mood and behaviour. The majority of children showed understanding of the reasons for being prescribed NIV. A subset of children did not notice their SDB. The health outcomes identified by HCPs and parents that could result from improved overnight gas exchange are subjective measures that rely on parent and child report. Measuring these health outcomes focussed on the impact of improved sleep rather than measuring improved sleep itself. CONCLUSIONS: It is important for HCPs administering NIV to ascertain whether CYP have noticed any of their sleep-disordered breathing symptoms and any improvements from using NIV, including the relationship between benefits and side effects. Focussing on promoting understanding for CYP who are unable to link their wellbeing to their previous night's sleep may be futile and HCP strategies should concentrate on the process of tolerating the device. Parents, CYP and HCPs should collaborate to identify treatment goals specifically tailored for the child and monitor any progress against these goals.


Asunto(s)
Ventilación no Invasiva , Padres , Investigación Cualitativa , Síndromes de la Apnea del Sueño , Humanos , Niño , Masculino , Femenino , Padres/psicología , Adolescente , Preescolar , Síndromes de la Apnea del Sueño/terapia , Síndromes de la Apnea del Sueño/psicología , Cooperación del Paciente , Actitud del Personal de Salud , Resultado del Tratamiento , Personal de Salud/psicología
2.
Br J Gen Pract ; 74(suppl 1)2024 Jun 20.
Artículo en Inglés | MEDLINE | ID: mdl-38902082

RESUMEN

BACKGROUND: The UK's National Institute for Health and Care Excellence (NICE) advises GPs to inform patients referred to the Urgent Suspected Cancer (USC) pathway about their impending service and expectations. However, little is known about patient experiences and information needs post-referral. GPs often grapple with conveying the urgency of referrals while offering reassurance. AIM: This study explores GP communication regarding cancer and USC referrals. METHOD: A secondary analysis of 23 audio-recorded GP-patient consultations, selected from a larger dataset of 200 consultations in Surrey and London (2017-2018), was conducted, focusing on discussions related to cancer. RESULTS: We found that most GPs informed patients that they might have cancer and engaged in reassurance about the patient's low risk of cancer using personalised risk statements. Some GPs, however, avoided all mention of cancer, using symptom-led language instead. GPs tended to focus on communicating practical rather than support-based information when discussing the referral. While most GPs informed patients that they would be seen by a specialist within two weeks, few discussed patients' support needs during the referral or specialist appointment. CONCLUSION: This presentation will offer language recommendations for clear communication about cancer referrals. This plays an important role in promoting shared decision-making and driving patient attendance for investigations. The study highlights the need for further research on communication practices around cancer referral to improve patient understanding and experience. Our recommendations for enhanced communication may improve patient outcomes by optimising routes to diagnosis via primary care.


Asunto(s)
Comunicación , Neoplasias , Relaciones Médico-Paciente , Derivación y Consulta , Humanos , Neoplasias/diagnóstico , Masculino , Femenino , Reino Unido , Medicina General , Médicos Generales , Persona de Mediana Edad , Adulto
3.
J Appl Res Intellect Disabil ; 37(1): e13153, 2024 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-37792824

RESUMEN

BACKGROUND: There is limited qualitative research focussed specifically on what it is like for children and young people with intellectual disabilities coming into hospital, with much of the evidence-base being about those with Autism Spectrum Condition or adults with intellectual disabilities. AIM: To share rich detail of the emotional and physical impact on children and young people with intellectual disabilities of attending hospital, from their own and their parent's perspective. METHODS: Talking Mats interviews, sticker survey and photography with children and young people with intellectual disabilities, and in-depth interviews, hospital diaries and photography with their parents. RESULTS AND CONCLUSIONS: The multiple and compounding layers of complexity surrounding hospital care of children and young people with intellectual disabilities resulted in challenges associated with loss of familiarity and routine, undergoing procedures, managing sensory overload, managing pain and having a lack of safety awareness. An individualised approach to their care is needed.


Asunto(s)
Trastorno del Espectro Autista , Discapacidad Intelectual , Adulto , Niño , Humanos , Adolescente , Discapacidad Intelectual/psicología , Padres/psicología , Trastorno del Espectro Autista/terapia , Emociones , Investigación Cualitativa
4.
BMC Cancer ; 23(1): 633, 2023 Jul 06.
Artículo en Inglés | MEDLINE | ID: mdl-37415106

RESUMEN

BACKGROUND: Low levels of cancer awareness may contribute to delays in seeking medical help and subsequent delays in diagnosis. For blood cancer this may be a particularly prominent problem due to the high prevalence of undifferentiated symptoms such as bodily pain, weakness, nausea and weight loss, resulting in low symptom awareness. The delay is exacerbated by the dismissal of similar symptoms which are often interpreted as mild disease, resulting in multiple consultations prior to diagnosis. This study describes the development of a Cancer Awareness Measure for Blood Cancer (Blood CAM) and presents results from a population-representative survey using the measure. METHODS: A rapid systematic review identified constructs relevant to blood cancer. Items were taken from previous awareness measures and other literature and reviewed by expert groups including health care professionals and patients. Cognitive interviews were conducted with ten members of the public to check comprehension and clarity. A total sample of 434 participants completed the survey at Time 1 and n = 302 at Time 2 (two weeks later). RESULTS: Internal reliability was high across the different constructs included in the questionnaire (> 0.70) and test-retest reliability was moderate to good (0.49-0.79). The most commonly recognised blood cancer symptoms were unexplained weight loss (68.9%) and unexplained bleeding (64.9%) and the least commonly recognised symptoms were night sweats (31.3%) breathlessness and rash/itchy skin (both 44%). In terms of symptom experience, fatigue was the most commonly reported symptom (26.7%) followed by night sweats (25.4%). Exploratory factor analysis of barriers to presenting at primary care revealed three distinct categories of barriers; emotional, external/practical and service/healthcare professional related. Service and emotional barriers were most common. CONCLUSIONS: We developed a valid and reliable tool to assess blood cancer awareness and showed variable awareness of blood cancer symptoms which can help target public health campaigns. We also incorporated additional measures (e.g. confidence to re-consult, ability to understand symptoms) that could be used to tailor public messaging for blood cancer and for other harder to suspect and diagnose cancers.


Asunto(s)
Neoplasias Hematológicas , Neoplasias , Humanos , Reproducibilidad de los Resultados , Conocimientos, Actitudes y Práctica en Salud , Reino Unido/epidemiología , Aceptación de la Atención de Salud/psicología
5.
Psychooncology ; 32(8): 1223-1230, 2023 08.
Artículo en Inglés | MEDLINE | ID: mdl-37199519

RESUMEN

OBJECTIVE: Approaches to improve earlier diagnosis of cancer often focus on symptom awareness as a key driver of help-seeking behaviour and other psychological influences are less well understood. This is the first study to explore the role of patient enablement on help-seeking for people experiencing potential blood cancer symptoms. METHODS: A cross-sectional, nationally representative survey was completed by 434 respondents (>18 years). Questions asked about symptom experiences, medical help-seeking and re-consultation. Existing patient enablement items were included in the newly developed Blood Cancer Awareness Measure. We collected data on patient socio-demographic characteristics. RESULTS: Of those responding to the survey 224/434 (51.6%) reported experiencing at least one potential blood cancer symptom. Half of those experiencing symptoms (112/224) had sought medical help. Results from logistic regression analysis showed that higher scores on patient enablement were associated with being less likely to seek help (Odds Ratio [OR] 0.89, Confidence Interval [CI] 0.81-0.98) after controlling for socio-demographics. Separate analyses showed that higher enablement was associated with being more comfortable to re-consult if symptoms didn't go away or got worse (OR 1.31, CI 1.16-1.48); after a test result suggested there was nothing to worry about, but symptoms persisted (OR 1.23, CI 1.12-1.34) or to request further tests, scans or investigations (OR 1.31, CI 1.19-1.44). CONCLUSIONS: Contrary to our hypotheses, patient enablement was associated with lower likelihood of help-seeking for potential blood cancer symptoms. Yet enablement appears to play an important role in likelihood of re-consulting when symptoms persist, get worse or need further investigation.


Asunto(s)
Conducta de Búsqueda de Ayuda , Neoplasias Hematológicas , Neoplasias , Humanos , Aceptación de la Atención de Salud/psicología , Estudios Transversales , Neoplasias/psicología , Encuestas y Cuestionarios
6.
J Health Care Chaplain ; 29(4): 337-352, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-35757912

RESUMEN

The present study examined chaplain reported plans for patient conversations regarding end-of-life (EOL) care through the lens of multiple goals. Chaplains (n = 69) were asked to curate a plan for engaging with a patient about EOL treatment options, including how they would engage in the conversation and what they would plan to discuss. Findings indicated that plans primarily consisted of relational and identity goals, with a majority navigating multiple goal orientations. Content overwhelmingly involved developing rapport with patients, eliciting patient preferences for care, and serving as a patient liaison. The current study addresses the paucity of research around the role a chaplain plays on the interdisciplinary team and their respective approach to EOL conversations. Examination of curated plans affords insight to what content is prioritized and which conversational goals are present. Integration of multiple goals offers preliminary evidence for conversational quality. Awareness of goal approach and content prioritized affords clarity on how chaplains can be called upon to support members of the interdisciplinary care team.


Asunto(s)
Cuidados Paliativos al Final de la Vida , Terapias Espirituales , Cuidado Terminal , Humanos , Clero , Comunicación
7.
PLoS One ; 17(5): e0267787, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35511900

RESUMEN

INTRODUCTION: The need to improve the quality of community mental health services for people with Complex Emotional Needs (CEN) (who may have a diagnosis of 'personality disorder') is recognised internationally and has become a renewed policy priority in England. Such improvement requires positive engagement from clinicians across the service system, and their perspectives on achieving good practice need to be understood. AIM: To synthesise qualitative evidence on clinician perspectives on what constitutes good practice, and what helps or prevents it being achieved, in community mental health services for people with CEN. METHODS: Six bibliographic databases were searched for studies published since 2003 and supplementary citation tracking was conducted. Studies that used any recognised qualitative method and reported clinician experiences and perspectives on community-based mental health services for adults with CEN were eligible for this review, including generic and specialist settings. Meta-synthesis was used to generate and synthesise over-arching themes across included studies. RESULTS: Twenty-nine papers were eligible for inclusion, most with samples given a 'personality disorder' diagnosis. Six over-arching themes were identified: 1. The use and misuse of diagnosis; 2. The patient journey into services: nowhere to go; 3. Therapeutic relationships: connection and distance; 4. The nature of treatment: not doing too much or too little; 5. Managing safety issues and crises: being measured and proactive; 6. Clinician and wider service needs: whose needs are they anyway? The overall quality of the evidence was moderate. DISCUSSION: Through summarising the literature on clinician perspectives on good practice for people with CEN, over-arching priorities were identified on which there appears to be substantial consensus. In their focus on needs such as for a long-term perspective on treatment journeys, high quality and consistent therapeutic relationships, and a balanced approach to safety, clinician priorities are mainly congruent with those found in studies on service user views. They also identify clinician needs that should be met for good care to be provided, including for supervision, joint working and organisational support.


Asunto(s)
Servicios Comunitarios de Salud Mental , Adulto , Inglaterra , Humanos , Trastornos de la Personalidad , Bienestar Social
8.
BMC Psychiatry ; 22(1): 55, 2022 01 27.
Artículo en Inglés | MEDLINE | ID: mdl-35081929

RESUMEN

BACKGROUND: There is consensus that services supporting people with complex emotional needs are part of a mental health care system in which change is needed. To date, service users' views and co-production initiatives have had little impact on the development of interventions and care. This needs to change, and our paper evidences the experiences and perspectives of a diverse range of people on how community services can best address the needs of people with complex emotional needs. METHODS: A co-produced qualitative research study. Lived experience researchers led data collection and analysis. Individual interviews were conducted with 30 people across England who had a diverse range of experiences and perspectives of using community services for complex emotional needs. Participants were asked about their experiences of using community services for their mental health, and views on how community services can best address their needs. Thematic analysis was used to analyse the data. RESULTS: Participants reported some experiences of good practice but also of experiences of severely stigmatising interventions, a lack of effective support and service fragmentation. Relational Practice was identified as the central overarching theme and describes how community services can best support people with complex emotional needs. This approach involves care delivered in a non-stigmatising, individualised and compassionate way and care that is trauma-informed. It involves care that is planned collaboratively with service users to ensure their multiple needs are addressed in a flexible, holistic and consistent way which accounts for the long-term and fluctuating nature of their needs. CONCLUSIONS: Relational practice approaches have potential to facilitate better community care for people with complex emotional needs. Research and service development are needed to examine how best to implement such approaches across the mental health service system. This work must be co-produced with people with relevant lived experience, their carers and the professionals who support them.


Asunto(s)
Servicios Comunitarios de Salud Mental , Servicios de Salud Mental , Cuidadores , Humanos , Salud Mental , Investigación Cualitativa
9.
J Fam Psychol ; 35(8): 1128-1137, 2021 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-34292033

RESUMEN

Throughout history, African Americans have endured much, and their experiences with discrimination and racism continue today. Despite ongoing challenges, African Americans have also shown their resilience. Religion and spirituality are two of the largest resources of resilience that African Americans employ. However, little is known about the role of religion and spirituality within African American couple relationships. Using dyadic data from 292 married and 233 cohabiting African American couples, we examined the impact of sanctification of the couple relationship on communal coping within the Actor Partner Interdependence Model. Significant actor effects were found between relational sanctification and communal coping for both married and cohabiting men and women. There was a significant partner effect between married men's relational sanctification and married women's communal coping. However, no other significant partner effects were found. (PsycInfo Database Record (c) 2021 APA, all rights reserved).


Asunto(s)
Negro o Afroamericano , Hombres , Adaptación Psicológica , Composición Familiar , Femenino , Humanos , Masculino , Matrimonio
10.
PLoS One ; 16(4): e0248316, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-33914750

RESUMEN

BACKGROUND: There is a recognised need to develop clear service models and pathways to provide high quality care in the community for people with complex emotional needs, who may have been given a "personality disorder" diagnosis. Services should be informed by the views of people with these experiences. AIMS: To identify and synthesise qualitative studies on service user experiences of community mental health care for Complex Emotional Needs. METHODS: We searched six bibliographic databases for papers published since 2003. We included peer reviewed studies reporting data on service user experiences and views about good care from community-based mental health services for adults with CEN, including generic mental health services and specialist "personality disorder" services. Studies using any qualitative method were included and thematic synthesis used to identify over-arching themes. RESULTS: Forty-seven papers were included. Main themes were: 1) The need for a long-term perspective on treatment journeys; 2) The need for individualised and holistic care; 3) Large variations in accessibility and quality of mental health services; 4) The centrality of therapeutic relationships; 5) Impacts of 'personality disorder' diagnosis. Themes tended to recur across studies from different countries and years. DISCUSSION: Recurrent major themes included wanting support that is individualised and holistic, provides continuity over long journeys towards recovery, and that is delivered by empathetic and well-informed clinicians who are hopeful but realistic about the prospects of treatment. Care that met these simple and clearly stated priorities tended to be restricted to often limited periods of treatment by specialist "personality disorder" services: generic and primary care services were often reported as far from adequate. There is an urgent need to co-design and test strategies for improving long-term support and treatment care for people with "personality disorders" throughout the mental health care system.


Asunto(s)
Servicios Comunitarios de Salud Mental , Manejo de la Enfermedad , Emociones , Accesibilidad a los Servicios de Salud , Salud Holística , Humanos , Trastornos Mentales/terapia , Trastornos de la Personalidad/terapia , Medicina de Precisión , Investigación Cualitativa , Calidad de la Atención de Salud
11.
J Soc Work End Life Palliat Care ; 17(4): 278-295, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-33866957

RESUMEN

Social workers play an integral role in end-of-life planning and patient outcomes, and yet how social workers approach such conversations with patients is not well understood. The current study employed a cross-sectional design to examine social worker planned communication about end-of-life care using a multiple goals framework. Recruited from online listservs, a content analysis was conducted with social worker curated plans (n = 20) for end-of-life conversations. Plans were coded for topics and content alignment with instrumental, identity, and relational goal types. Topics found were related to eliciting patient goals and the utilization of written resources. A substantial percentage of social workers also noted the inclusion of other parties in the conversation. Findings suggested that content was predominately instrumental (i.e. task-oriented) with an overwhelming majority adhering to multiple conversational goals. Plan content affords insight to occupational orientation and prioritization during conversations with patients. Further, identifying how the majority of planned responses integrate multiple goals simultaneously gives credence to existing research regarding enhanced conversational effectiveness when social workers are present on the palliative care team.


Asunto(s)
Planificación Anticipada de Atención , Trabajadores Sociales , Comunicación , Estudios Transversales , Objetivos , Humanos , Enfermo Terminal
12.
Pediatr Blood Cancer ; 68(3): e28802, 2021 03.
Artículo en Inglés | MEDLINE | ID: mdl-33226200

RESUMEN

BACKGROUND: Previous studies have found that parents of children with cancer desire more prognostic information than is often given even when prognosis is poor. We explored in audio-recorded consultations the kinds of information they seek. METHODS: Ethnographic study including observation and audio recording of consultations at diagnosis. Consultations were transcribed and analyzed using an interactionist perspective including tools drawn from conversation and discourse analysis. RESULTS: Enrolled 21 parents and 12 clinicians in 13 cases of children diagnosed with a high-risk brain tumor (HRBT) over 20 months at a tertiary pediatric oncology center. Clinicians presented prognostic information in all cases. Through their questions, parents revealed what further information they desired. Clinicians made clear that no one could be absolutely certain what the future held for an individual child. Explicit communication about prognosis did not satisfy parents' desire for information about their own child. Parents tried to personalize prognostic information and to apply it to their own situation. Parents moved beyond prognostic information presented and drew conclusions, which could change over time. Parents who were present in the same consultations could form different views of their child's prognosis. CONCLUSION: Population level prognostic information left parents uncertain about their child's future. The need parents revealed was not for more such information but rather how to use the information given and how to apply it to their child in the face of such uncertainty. Further research is needed on how best to help parents deal with uncertainty and make prognostic information actionable.


Asunto(s)
Neoplasias Encefálicas/diagnóstico , Comunicación , Padres/psicología , Relaciones Médico-Paciente , Pautas de la Práctica en Medicina/normas , Derivación y Consulta/normas , Revelación de la Verdad/ética , Adolescente , Neoplasias Encefálicas/mortalidad , Neoplasias Encefálicas/terapia , Niño , Preescolar , Femenino , Humanos , Lactante , Masculino , Pronóstico , Encuestas y Cuestionarios , Tasa de Supervivencia
13.
Health Commun ; 35(1): 56-64, 2020 01.
Artículo en Inglés | MEDLINE | ID: mdl-30339088

RESUMEN

This study examined health-care provider planned responses to patient misunderstandings about end-of-life care using a multiple goals framework. Plan topics and content alignment with task, identity, and relational goal types were coded. Findings suggested that content was predominately task-oriented and concerned implications of treatment options such as choice outcomes and efficacy rates. A substantial percentage of providers planned to refer further discussion about the misunderstanding to another team member or occupational resource. Despite the prompt of patient misunderstanding, little attention was given to literacy and/or avoidance of medical jargon. Implications for these findings are discussed.


Asunto(s)
Alfabetización en Salud , Personal de Salud/psicología , Prioridad del Paciente , Cuidado Terminal/psicología , Adulto , Femenino , Objetivos , Humanos , Masculino , Persona de Mediana Edad
14.
Health Soc Care Community ; 27(5): 1353-1362, 2019 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-31157937

RESUMEN

Recovery Colleges aim to assist people with mental health difficulties in the journey to recovery through education. They bring together professional and lived experience of mental health challenges in a non-stigmatising college environment and operate on college principles. All courses are designed to contribute towards well-being and recovery. Despite the ever-growing number of Recovery Colleges (both in the UK and internationally), the evaluative evidence is limited; comprising mostly non-peer-reviewed evaluations, audits and case studies. The present article comprises a mixed-methods evaluation of a newly established Recovery College in South East Essex, UK. The evaluation comprised questionnaires of mental well-being and social inclusion at baseline and 3 and 6 month follow-up, in addition to three focus groups. There were significant improvements in both mental well-being and social inclusion from baseline to 6 month follow-up (25 participants completed the measure of well-being at both time points and 19 completed the measure of social inclusion). This was supported by additional free-text questionnaire comments and focus group findings (17 participants participated across the focus groups), with reports of increased confidence, reduced anxiety and increased social inclusion/reduced social isolation. Additionally, at 6 month follow-up a majority of respondents were planning on attending courses external to the Recovery College, volunteering and/or gaining paid employment. Challenges and recommendations identified through the focus groups indicate the importance for standardisation of processes (which is particularly important when multiple organisations are involved in the running of a Recovery College), as well as consideration of longer-running courses. Funders should continue to invest in the Recovery College movement as the growing evidence-base is demonstrating how these colleges can help address the high prevalence of mental health difficulties, by promoting mental well-being and social inclusion.


Asunto(s)
Trastornos Mentales/rehabilitación , Recuperación de la Salud Mental , Rehabilitación Psiquiátrica/organización & administración , Apoyo Social , Adulto , Curriculum , Femenino , Grupos Focales , Humanos , Masculino , Salud Mental , Servicios de Salud Mental/organización & administración , Grupo Paritario , Encuestas y Cuestionarios , Reino Unido , Universidades , Adulto Joven
15.
BMC Pediatr ; 19(1): 192, 2019 06 11.
Artículo en Inglés | MEDLINE | ID: mdl-31182066

RESUMEN

BACKGROUND: In response to multiple United Kingdom investigations and inquiries into the care of adults with learning disabilities, Mencap produced the Getting it Right Charter which campaigned for the appointment of a Learning Disability Liaison Nurse in every hospital. More recent best practice guidelines from the Care Quality Commission included the need for all children's units to have access to a senior learning disability nurse who can support staff and help them manage difficult situations. However, little evidence exists of the extent of learning disability nurse provision in children's hospitals or the nature and impact of this role. Here we report selected findings from a national mixed methods study of hospital care for children and young people with and without learning disabilities in England. The extent of learning disability nurse provision in children's hospitals is described and perceptions of staff working in hospitals with and without such provision is compared. METHODS: Semi-structured interviews were conducted with senior staff across 15 children's hospitals and an anonymous survey was sent to clinical and non-clinical staff with patient (children and young people) contact within these hospitals. The survey focused on six different elements of care for those with and without learning disability, with additional questions concerning identifying and tracking those with learning disabilities and two open-ended questions. RESULTS: Forty-eight senior staff took part in interviews, which included a subset of nine nurses and one allied health professional employed in a dedicted learning disability nurse role, or similar. Surveys were completed by 1681, of whom 752 worked in a hospital with dedicated learning disability nurse provision. We found evidence of limited and varied learning disability nurse provision which was valued by hospital staff and shown to positively impact their perceptions of being capable to care for children and young people with learning disabilities, but not shown to increase staff perceptions of capacity or confidence, or how children and young people are valued within the hospital, their safety or access to appointments. CONCLUSION: Further consideration must be given to how learning disability nurse roles within children's hospitals are best operationalised in practice to have the greatest impact on staff and families, as well as how we monitor and evaluate them to ensure they are being utilised effectively and efficiently. TRIAL REGISTRATION: The study has been registered on the NIHR CRN portfolio 20,461 (Phase 1), 31,336 (Phases 2-4).


Asunto(s)
Actitud del Personal de Salud , Hospitales Pediátricos , Discapacidades para el Aprendizaje/enfermería , Rol de la Enfermera , Adolescente , Niño , Análisis de Datos , Inglaterra , Humanos , Entrevistas como Asunto , Admisión y Programación de Personal , Investigación Cualitativa , Determinantes Sociales de la Salud , Adulto Joven
16.
J Appl Res Intellect Disabil ; 32(5): 1176-1183, 2019 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-31095841

RESUMEN

BACKGROUND: Children and young people with learning disabilities experience poor health outcomes and lengthier hospital admissions than those without learning disabilities. No consistently applied, systematic approach exists across the NHS to identify and record this population. This paper describes practices in English hospitals to identify children and young people with learning disabilities. METHOD: Interviews: 65 NHS staff. Questionnaire: 2,261 NHS staff. Conducted across 24 NHS hospitals in England. RESULTS: No standardized approach exists to identify children or young people with a learning disability or for this information to be consistently recorded, communicated to relevant parties within a hospital, Trust or across NHS services. Staff reported a reliance on parents to inform them about their child's needs but concerns about "flagging" patients might be a significant barrier. DISCUSSION: Without an integrated systematic way across the NHS to identify children with learning disabilities, their individual needs will not be identified.


Asunto(s)
Actitud del Personal de Salud , Administradores de Hospital , Hospitales , Discapacidades para el Aprendizaje/diagnóstico , Adolescente , Adulto , Niño , Inglaterra , Humanos , Programas Nacionales de Salud , Investigación Cualitativa , Adulto Joven
17.
Viruses ; 10(6)2018 06 11.
Artículo en Inglés | MEDLINE | ID: mdl-29891797

RESUMEN

Murray Valley Encephalitis virus (MVEV) is a mosquito-borne Flavivirus. Clinical presentation is rare but severe, with a case fatality rate of 15⁻30%. Here we report a case of MVEV from the cerebrospinal fluid (CSF) of a patient in the Northern Territory in Australia. Initial diagnosis was performed using both MVEV-specific real-time, and Pan-Flavivirus conventional, Polymerase Chain Reaction (PCR), with confirmation by Sanger sequencing. Subsequent isolation, the first from CSF, was conducted in Vero cells and the observed cytopathic effect was confirmed by increasing viral titre in the real-time PCR. Isolation allowed for full genome sequencing using the Scriptseq V2 RNASeq library preparation kit. A consensus genome for VIDRL-MVE was generated and phylogenetic analysis identified it as Genotype 2. This is the first reported isolation, and full genome sequencing of MVEV from CSF. It is also the first time Genotype 2 has been identified in humans. As such, this case has significant implications for public health surveillance, epidemiology, and the understanding of MVEV evolution.


Asunto(s)
Líquido Cefalorraquídeo/virología , Virus de la Encefalitis del Valle Murray/clasificación , Virus de la Encefalitis del Valle Murray/aislamiento & purificación , Encefalitis por Arbovirus/virología , Secuenciación Completa del Genoma , Animales , Niño , Chlorocebus aethiops , Virus de la Encefalitis del Valle Murray/genética , Genotipo , Humanos , Northern Territory , Filogenia , Reacción en Cadena de la Polimerasa , Homología de Secuencia , Células Vero , Cultivo de Virus
18.
BMC Health Serv Res ; 18(1): 203, 2018 03 23.
Artículo en Inglés | MEDLINE | ID: mdl-29566681

RESUMEN

BACKGROUND: Children and young people (CYP) with learning disabilities (LD) are a vulnerable population with increased risk of abuse and accidental injury and whose parents have reported concerns about the quality, safety and accessibility of their hospital care. The Care Quality Commission's (CQC) view of best practice for this group of patients includes: access to senior LD nurse provision; a clearly visible flagging system for identifying them; the use of hospital passports; and defined communication strategies (Glasper, Comp Child Adolesc Nurs 40:63-67, 2017). What remains unclear is whether these recommendations are being applied and if so, what difference they are making. Furthermore, what we do not know is whether parental concerns of CYP with LD differ from parents of other children with long-term conditions. The aims of this study were to 1) describe the organisational context for healthcare delivery to CYP with LD and their families and 2) compare staff perceptions of their ability to identify the needs of CYP with and without LD and their families and provide high quality care to effectively meet these needs. METHODS: Individual interviews (n = 65) and anonymised online survey (n = 2261) were conducted with hospital staff working with CYP in 15 children's and 9 non-children's hospitals in England. The majority of interviews were conducted over the telephone and recorded and transcribed verbatim. Health Research Authority was obtained and verbal or written consent for data collection was obtained from all interview participants. RESULTS: The nature and extent of organisational policies, systems and practices in place within hospitals to support the care of CYP with LD differs across England and some uncertainty exists within and across hospitals as to what is currently available and accessed. Staff perceived that those with LD were included less, valued less, and less safe than CYP without LD. They also reported having less confidence, capability and capacity to meet the needs of this population compared to those without LD. CONCLUSION: Findings indicate inequality with regards the provision of high quality hospital care to children and young people with LD that meets their needs. There is a pressing need to understand the impact this has on them and their families. TRIAL REGISTRATION: The study has been registered on the NIHR CRN portfolio 20461 (Phase 1), 31336 (Phases 2-4).


Asunto(s)
Actitud del Personal de Salud , Servicios de Salud del Niño/organización & administración , Disparidades en Atención de Salud , Discapacidades para el Aprendizaje/epidemiología , Personal de Hospital/psicología , Niño , Inglaterra/epidemiología , Encuestas de Atención de la Salud , Necesidades y Demandas de Servicios de Salud , Investigación sobre Servicios de Salud , Humanos , Investigación Cualitativa , Calidad de la Atención de Salud
19.
Colloids Surf B Biointerfaces ; 158: 137-146, 2017 Oct 01.
Artículo en Inglés | MEDLINE | ID: mdl-28688363

RESUMEN

In this study, we designed emulsions with an oil-water interface consisting of a composite layer of whey protein isolate (WPI, 1wt%) and cellulose nanocrystals (CNCs) (1-3wt%). The hypothesis was that a secondary layer of CNCs at the WPI-stabilized oil-water interface could protect the interfacial protein layer against in vitro gastric digestion by pepsin at 37°C. A combination of transmission electron microscopy, ζ-potential measurements, interfacial shear viscosity measurements and theoretical surface coverage considerations suggested the presence of CNCs and WPI together at the O/W interface, owing to the electrostatic attraction between complementarily charged WPI and CNCs at pH 3. Microstructural analysis and droplet sizing revealed that the presence of CNCs increased the resistance of the interfacial protein film to rupture by pepsin, thus inhibiting droplet coalescence in the gastric phase, which occurs rapidly in an emulsion stabilized by WPI alone. It appeared that there was an optimum concentration of CNCs at the interface for such barrier effects. Sodium dodecyl sulphate polyacrylamide gel electrophoresis (SDS-PAGE) results further confirmed that the presence of 3wt% of CNCs reduced the rate and extent of proteolysis of protein at the interface. Besides, evidence of adsorption of CNCs to the protein-coated droplets to form more rigid layers, there is also the possibility that network formation by the CNCs in the bulk (continuous) phase reduced the kinetics of proteolysis. Nevertheless, structuring emulsions with mixed protein-particle layers could be an effective strategy to tune and control interfacial barrier properties during gastric passage of emulsions.


Asunto(s)
Celulosa/química , Emulsiones/química , Proteína de Suero de Leche/química , Digestión , Electroforesis en Gel de Poliacrilamida , Concentración de Iones de Hidrógeno
20.
Sci Rep ; 7(1): 3304, 2017 06 12.
Artículo en Inglés | MEDLINE | ID: mdl-28607437

RESUMEN

Social insects host a diversity of viruses. We examined New Zealand populations of the globally widely distributed invasive Argentine ant (Linepithema humile) for RNA viruses. We used metatranscriptomic analysis, which identified six potential novel viruses in the Dicistroviridae family. Of these, three contigs were confirmed by Sanger sequencing as Linepithema humile virus-1 (LHUV-1), a novel strain of Kashmir bee virus (KBV) and Black queen cell virus (BQCV), while the others were chimeric or misassembled sequences. We extended the known sequence of LHUV-1 to confirm its placement in the Dicistroviridae and categorised its relationship to closest relatives, which were all viruses infecting Hymenoptera. We examined further for known viruses by mapping our metatranscriptomic sequences to all viral genomes, and confirmed KBV, BQCV, LHUV-1 and Deformed wing virus (DWV) presence using qRT-PCR. Viral replication was confirmed for DWV, KBV and LHUV-1. Viral titers in ants were higher in the presence of honey bee hives. Argentine ants appear to host a range of' honey bee' pathogens in addition to a virus currently described only from this invasive ant. The role of these viruses in the population dynamics of the ant remain to be determined, but offer potential targets for biocontrol approaches.


Asunto(s)
Hormigas/virología , Virus ARN/fisiología , Animales , Genoma Viral , Nueva Zelanda , Sistemas de Lectura Abierta/genética , Filogenia , Virus ARN/genética , Transcriptoma/genética
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