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BACKGROUND: There is increasing interest in innovative methods to carry out systematic reviews of complex interventions. Theory-based approaches, such as logic models, have been suggested as a means of providing additional insights beyond that obtained via conventional review methods. METHODS: This paper reports the use of an innovative method which combines systematic review processes with logic model techniques to synthesise a broad range of literature. The potential value of the model produced was explored with stakeholders. RESULTS: The review identified 295 papers that met the inclusion criteria. The papers consisted of 141 intervention studies and 154 non-intervention quantitative and qualitative articles. A logic model was systematically built from these studies. The model outlines interventions, short term outcomes, moderating and mediating factors and long term demand management outcomes and impacts. Interventions were grouped into typologies of practitioner education, process change, system change, and patient intervention. Short-term outcomes identified that may result from these interventions were changed physician or patient knowledge, beliefs or attitudes and also interventions related to changed doctor-patient interaction. A range of factors which may influence whether these outcomes lead to long term change were detailed. Demand management outcomes and intended impacts included content of referral, rate of referral, and doctor or patient satisfaction. CONCLUSIONS: The logic model details evidence and assumptions underpinning the complex pathway from interventions to demand management impact. The method offers a useful addition to systematic review methodologies. TRIAL REGISTRATION NUMBER: PROSPERO registration number: CRD42013004037.
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Minería de Datos , Manejo de la Enfermedad , Derivación y Consulta , Humanos , Conocimientos, Actitudes y Práctica en Salud , Modelos Teóricos , Satisfacción del Paciente , Relaciones Médico-Paciente , Revisiones Sistemáticas como AsuntoRESUMEN
BACKGROUND: Research suggests that there are a number of factors which can be associated with delay in a patient seeking professional help following chest pain, including demographic and social factors. These factors may have an adverse impact on the efficacy of interventions which to date have had limited success in improving patient action times. Theory-based methods of review are becoming increasingly recognised as important additions to conventional systematic review methods. They can be useful to gain additional insights into the characteristics of effective interventions by uncovering complex underlying mechanisms. METHODS: This paper describes the further analysis of research papers identified in a conventional systematic review of published evidence. The aim of this work was to investigate the theoretical frameworks underpinning studies exploring the issue of why people having a heart attack delay seeking professional medical help. The study used standard review methods to identify papers meeting the inclusion criterion, and carried out a synthesis of data relating to theoretical underpinnings. RESULTS: Thirty six papers from the 53 in the original systematic review referred to a particular theoretical perspective, or contained data which related to theoretical assumptions. The most frequently mentioned theory was the self-regulatory model of illness behaviour. Papers reported the potential significance of aspects of this model including different coping mechanisms, strategies of denial and varying models of treatment seeking. Studies also drew attention to the potential role of belief systems, applied elements of attachment theory, and referred to models of maintaining integrity, ways of knowing, and the influence of gender. CONCLUSIONS: The review highlights the need to examine an individual's subjective experience of and response to health threats, and confirms the gap between knowledge and changed behaviour. Interventions face key challenges if they are to influence patient perceptions regarding seriousness of symptoms; varying processes of coping; and obstacles created by patient perceptions of their role and responsibilities. A theoretical approach to review of these papers provides additional insight into the assumptions underpinning interventions, and illuminates factors which may impact on their efficacy. The method thus offers a useful supplement to conventional systematic review methods.
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Dolor en el Pecho/diagnóstico , Diagnóstico Tardío/prevención & control , Aceptación de la Atención de Salud , Dolor en el Pecho/etiología , Medicina Basada en la Evidencia , Humanos , Modelos TeóricosRESUMEN
BACKGROUND: Non-invasive ventilation improves quality and quantity of life in patients with motor neurone disease who have respiratory failure. Use of non-invasive ventilation may, however, result in complex clinical issues for end-of-life care, with concerns as to whether and how it should be withdrawn. AIM: This study aimed to describe carer and health professional experiences of end-of-life care of motor neurone disease patients using non-invasive ventilation. DESIGN/PARTICIPANTS: This article reports data from qualitative interviews with family carers and professionals following the death of patients with motor neurone disease who were using non-invasive ventilation in the final phase of the disease. RESULTS: Ten of the 20 patients initiated on non-invasive ventilation were using it in the end-of-life phase of their disease, with 5 using it for 24 h/day. Interviews were carried out with nine family carers and 15 professionals. Nine recurring themes were identified in the data. Both carers and health-care professionals perceived that the terminal phase of motor neurone disease was unexpectedly rapid and that this often led to unplanned interactions with the emergency services. Carers of patients who used non-invasive ventilation perceived non-invasive ventilation as aiding patient comfort and anxiety at the end of life. CONCLUSIONS: The use of non-invasive ventilation was described as beneficial and was not perceived by carers or most professionals to have adversely impacted patient's end-of-life experience. This study highlights variation in patient wishes regarding usage towards the end of life, uncertainty regarding appropriate management among professionals and the importance of disseminating end-of-life wishes.
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Actitud del Personal de Salud , Cuidadores/psicología , Enfermedad de la Neurona Motora/complicaciones , Respiración Artificial/métodos , Insuficiencia Respiratoria/terapia , Cuidado Terminal/métodos , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Satisfacción del Paciente , Investigación Cualitativa , Calidad de Vida , Insuficiencia Respiratoria/etiologíaRESUMEN
INTRODUCTION: Although pain experienced at dressing change has been reported as the worst aspect of living with chronic wounds, UK guidance for their management is primarily tailored to wound healing and only attends to pain as a secondary consideration. Consequently, there is little up-to-date guidance that specifically addresses how patients, carers and healthcare professionals should manage wound-related pain at dressing change. This mapping review will identify, describe and appraise the existing research evidence for strategies used to assess pain intensity and prevent or alleviate pain at dressing change in chronic wounds. In addition, it will highlight areas for future research and inform the development of up-to-date guidance for healthcare professionals. METHODS AND ANALYSIS: We will search MEDLINE and Epub Ahead of Print, In-Process & Other Non-Indexed Citations and Daily (via Ovid SP), Embase (via Ovid SP), Cochrane Central Register of Controlled Trials (via Wiley Cochrane Library), Cumulative Index of Nursing and Allied Health Literature (via EBSCO) and the Web of Science Citation Index Expanded and Social Sciences Citation Index (via Clarivate Analytics). Screening will be undertaken independently by two reviewers, with any disagreements resolved through discussion. Included studies will be subject to coding, using a tested data extraction tool, by two reviewers working independently. The methodological quality of the studies included will be reviewed using quality assessment instruments appropriate for each study design (Cochrane Risk of Bias tool (RoB 2); Risk of Bias in Non-randomised Studies of interventions tool; Critical Appraisal Skills Programme tool). Data will be described narratively and also presented visually in an interactive web-based evidence and gap map. ETHICS AND DISSEMINATION: As this mapping review does not collect original data, ethical approval is not applicable. Findings will be disseminated via a written report, an interactive online mapping tool and in peer-reviewed journals and conference presentations. PROSPERO REGISTRATION NUMBER: CRD42021260130.
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Dolor , Infección de la Herida Quirúrgica , Humanos , Vendajes , Personal de Salud , Infección de la Herida Quirúrgica/prevención & control , Cicatrización de Heridas , Literatura de Revisión como AsuntoRESUMEN
Objective: Noninvasive ventilation (NIV) improves survival and quality of life in motor neuron disease (MND), but many patients fail to receive effective ventilation. This study aimed to map the respiratory clinical care for MND patients at a service and individual healthcare professional (HCP) level to understand where attention may be needed to ensure all patients receive optimal care. Methods: Two online surveys of HCPs working with MND patients in the UK were conducted. Survey 1 targeted HCPs providing specialist MND care. Survey 2 targeted HCPs working in respiratory/ventilation services and community teams. Data were analysed using descriptive and inferential statistics. Results: Responses from 55 HCPs providing specialist MND care who worked at 21 MND care centres and networks and 13 Scotland Health Boards were analysed from Survey 1. Responses from 85 HCPs from respiratory/ventilation services and 73 HCPs from community teams, representing 97 services, were analysed from Survey 2. Significant differences in practice were identified at each stage of the respiratory care pathway as well as evidence of the need for improvement. This included when patients were referred to respiratory services, the time taken waiting to commence NIV, the availability of sufficient NIV equipment and provision of services, particularly out of hours. Conclusion: We have highlighted significant disparity in MND respiratory care practices. Increased awareness of the factors that influence NIV success and the performance of individuals and services is important for optimal practice.
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A systematic review and narrative synthesis to determine the effectiveness of contraception service interventions for young people delivered in health care premises was undertaken. We searched 12 key health and medical databases, reference lists of included papers and systematic reviews and cited reference searches on included articles. All retrieved literature was screened at title and abstract levels, and relevant articles were taken through to full paper appraisal. Data relating to study design, outcomes and quality were extracted by one reviewer and independently checked by a second reviewer. We included interventions that consisted of contraceptive service provision for young people, and also interventions to encourage young people to use existing contraceptive services. The searches identified 23 studies that met the inclusion criteria. The papers focused on: new adolescent services, outreach to existing services, advanced provision of emergency contraception, condom/contraceptive provision and advice and repeat pregnancy prevention. The literature in general is not well developed in terms of good quality effectiveness studies and key outcome measures. However, it is possible to make recommendations in terms of outreach versus targeted young people's services in health care settings, advanced provision of emergency contraception and long-acting reversible contraception to prevent repeat adolescent pregnancy.
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Servicios de Salud del Adolescente , Servicios de Salud Comunitaria , Anticoncepción , Promoción de la Salud/normas , Narración , Adolescente , Adulto , Femenino , Promoción de la Salud/métodos , Humanos , Masculino , Embarazo , Embarazo no Planeado , Adulto JovenRESUMEN
OBJECTIVES: In England, the NHS111 service provides assessment and triage by telephone for urgent health problems. A digital version of this service has recently been introduced. We aimed to systematically review the evidence on digital and online symptom checkers and similar services. DESIGN: Systematic review. DATA SOURCES: We searched Medline, Embase, the Cochrane Library, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Health Management Information Consortium, Web of Science and ACM Digital Library up to April 2018, supplemented by phrase searches for known symptom checkers and citation searching of key studies. ELIGIBILITY CRITERIA: Studies of any design that evaluated a digital or online symptom checker or health assessment service for people seeking advice about an urgent health problem. DATA EXTRACTION AND SYNTHESIS: Data extraction and quality assessment (using the Cochrane Collaboration version of QUADAS for diagnostic accuracy studies and the National Heart, Lung and Blood Institute tool for observational studies) were done by one reviewer with a sample checked for accuracy and consistency. We performed a narrative synthesis of the included studies structured around pre-defined research questions and key outcomes. RESULTS: We included 29 publications (27 studies). Evidence on patient safety was weak. Diagnostic accuracy varied between different systems but was generally low. Algorithm-based triage tended to be more risk averse than that of health professionals. There was very limited evidence on patients' compliance with online triage advice. Study participants generally expressed high levels of satisfaction, although in mainly uncontrolled studies. Younger and more highly educated people were more likely to use these services. CONCLUSIONS: The English 'digital 111' service has been implemented against a background of uncertainty around the likely impact on important outcomes. The health system may need to respond to short-term changes and/or shifts in demand. The popularity of online and digital services with younger and more educated people has implications for health equity. PROSPERO REGISTRATION NUMBER: CRD42018093564.
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Accesibilidad a los Servicios de Salud/normas , Investigación sobre Servicios de Salud , Líneas Directas/normas , Calidad de la Atención de Salud/normas , Telemedicina/normas , Triaje/normas , Inglaterra , Humanos , Conducta en la Búsqueda de Información , Triaje/métodosRESUMEN
UK government policy is encouraging healthcare staff to blur traditional roles, in the drive to increase joint working between practitioners. However, there is currently a lack of clarity regarding the impact that changes to traditional working practice might have on staff delivering the services, or on patient care. In this article, we report findings from three qualitative case studies examining interprofessional practice in stroke care, in which the influence of professional differences emerged as a significant theme. We draw on findings from individual semi-structured interviews, as well as fieldwork observations, to describe the influence of professional knowledge and skills, role and identity, and power and status considerations in interprofessional working. The insights that were gained contribute to the understanding of how professional differences impact on healthcare staff joint working, and suggest that the elements identified need to be fully considered in drives towards changed working practice.
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Conflicto Psicológico , Comunicación Interdisciplinaria , Relaciones Interprofesionales , Femenino , Humanos , Entrevistas como Asunto , Masculino , Accidente Cerebrovascular/terapia , Reino UnidoRESUMEN
Youth violence in Latin America is an important public health problem. However, the evidence from preventive programs within the region to address this problem is limited. Identifying context-specific factors that facilitate or hinder the success of interventions is necessary to guarantee the successful implementation of new preventive strategies. We present a systematic review and synthesis of qualitative studies to identify factors affecting the implementation of programs to prevent youth violence in Latin America. We searched 10 electronic databases and websites of international institutions. The quality of the studies was assessed using the critical appraisal skills program checklist, while the certainty of the findings of the synthesis was assessed using the certainty of the qualitative evidence approach. We included eight papers describing five programs in Argentina, Venezuela, Peru, El Salvador, and Mexico. Most of the factors affecting the implementation of programs were aspects related to features of the programs and social/political constraints. The synthesis suggests that future programs can benefit from having a multidisciplinary and/or multisectoral approach involving different key players. At the same time, potential strategies for avoiding problems related to such active engagement should be planned via promoting effective channels for communication and supervision. The review also suggests the importance of increasing awareness and motivation toward the problem of youth violence among relevant agencies and stakeholders. While the limited volume and quality of the literature impact on the ability to draw conclusions, the results could be useful for new programs being designed and the ones seeking to be adapted from other contexts.
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Desarrollo de Programa/métodos , Violencia/prevención & control , Adolescente , Argentina , Acoso Escolar/prevención & control , Niño , El Salvador , Femenino , Humanos , América Latina , Masculino , México , Perú , Investigación Cualitativa , Venezuela , Adulto JovenRESUMEN
OBJECTIVE: To investigate the feasibility of undertaking a definitive randomised controlled trial (RCT). SETTING: This was a pilot, pragmatic superiority RCT with a qualitative element, recruiting from 14 general practitioner (GP) practices in England. PARTICIPANTS: Patients over 18 years of age presenting to their GP with unilateral lumbar radicular syndrome (LRS), defined as radicular pain and/or neurological symptoms originating from lumbar nerve roots, were eligible to participate in the study, those who did not have a clear understanding of the English language or had comorbidities preventing rehabilitation were ineligible. INTERVENTIONS: Participants were randomised into early intervention physiotherapy or usual care with the former receiving their treatment within 2 weeks after randomisation and the latter 6 weeks postrandomisation. Both groups received a patient-centred, goal-orientated physiotherapy programme specific to their needs. Participants received up to six treatment sessions over an 8-week period. OUTCOME MEASURES: Process outcomes to determine the feasibility of the study and an exploratory analysis of patient-reported outcomes, including self-rated disability, pain and general health, these were collected at baseline, 6, 12 and 26 weeks postrandomisation. RESULTS: 80 participants were recruited in 10 GP practices over 34 weeks and randomised to (early intervention physiotherapy n=42, usual care n=38). Follow-up rates at 26 weeks were 32 (84%) in the usual care and 36 (86%) in the early intervention physiotherapy group. The mean area under the curve (larger values indicating more disability) for the Oswestry Disability Index over the 26 weeks was 16.6 (SD 11.4) in the usual care group and 16.0 (SD 14.0) in the intervention group. A difference of -0.6 (95% CI -0.68 to 5.6) in favour of the intervention group. CONCLUSIONS: The results of the study suggest a full RCT is feasible and will provide evidence as to the optimal timing of physiotherapy for patients with LRS. TRIAL REGISTRATION NUMBER: NCT02618278, ISRCTN25018352.
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Región Lumbosacra , Modalidades de Fisioterapia , Radiculopatía/terapia , Adulto , Evaluación de la Discapacidad , Estudios de Factibilidad , Femenino , Medicina General/estadística & datos numéricos , Humanos , Masculino , Persona de Mediana Edad , Proyectos Piloto , Investigación Cualitativa , Calidad de Vida , SíndromeRESUMEN
OBJECTIVES: This review aims to summarise evidence on the effectiveness of interventions to prevent youth violence in Latin America. METHODS: A systematic search on 13 academic databases was conducted to locate studies evaluating a primary or secondary prevention intervention in Latin America. Studies could use any type of quantitative design to assess outcomes related to youth violence. A search of websites, references and citation searching was also carried out. The quality of each study was assessed. RESULTS: Nine studies were identified. Most documented positive effects of the interventions on the perception of youth violence present in the community/school. Evidence was found of a reduction in homicides and juvenile crimes in three studies, two of which evaluated a community-based intervention. There were mixed results for the self-report of participation on violent acts. The majority of the studies lacked of a rigorous design. CONCLUSIONS: Most of the interventions had some promising results, including the reduction of homicides within communities. Community-based programmes were the most consistent regarding an effectiveness to prevent violence. However, the evidence for Latin America is still scarce and relies on non-rigorously designed studies.
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Homicidio/prevención & control , Violencia/prevención & control , Adolescente , Conducta del Adolescente/psicología , Agresión/psicología , Crimen/prevención & control , Humanos , América Latina , Características de la Residencia , Instituciones AcadémicasRESUMEN
OBJECTIVES: This study explores the experience of gastrostomy insertion from the perspective of the patients and their informal carers. Gastrostomy feeding is commonly used to support motor neurone disease (MND) patients with dysphagia. However, there is lack of information describing patient and carer experiences following gastrostomy insertion. The effect of gastrostomy on quality of life for these patients and their family is currently not well understood. METHODS: Retrospective qualitative exploration using semistructured interviews with patients and their informal carers to elicit in-depth descriptions of their experiences and views following gastrostomy. RESULTS: 27 patients consented to the study; of these, 23 underwent a successful gastrostomy. 10 patients and 8 carers were interviewed, approximately 3â months following a successful gastrostomy. Participants described clinical complications, practical issues, time restrictions imposed by strict feeding regimens and psychological issues, which adversely impacted on quality of life. However, the establishment of a safe alternative route for feeding and medication, and the reduced worry over difficult meals and weight loss, were described by all as outweighing these negative impacts. Participants also described having received education/training on gastrostomy feeding both in hospital and in the community, which helped them to cope during the transition from oral to gastrostomy feeding. CONCLUSIONS: This study highlights the challenges and benefits of gastrostomy as well as the importance of education and information provision. Emphasis should be given to education before and after insertion along with support and care in the community. While the significant impact of gastrostomy on patients and carers should not be underestimated, the potential benefits were described as outweighing these concerns.
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Cuidadores/psicología , Gastrostomía/psicología , Conocimientos, Actitudes y Práctica en Salud , Enfermedad de la Neurona Motora/psicología , Adulto , Anciano , Anciano de 80 o más Años , Trastornos de Deglución/etiología , Trastornos de Deglución/cirugía , Estudios de Evaluación como Asunto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Enfermedad de la Neurona Motora/complicaciones , Enfermedad de la Neurona Motora/cirugía , Estudios Retrospectivos , Resultado del TratamientoRESUMEN
BACKGROUND: Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease resulting in death, usually from respiratory failure, within 2-3 years of symptom onset. Non-invasive ventilation (NIV) is a treatment that when given to patients in respiratory failure leads to improved survival and quality of life. Diaphragm pacing (DP), using the NeuRx/4(®) diaphragm pacing system (DPS)™ (Synapse Biomedical, Oberlin, OH, USA), is a new technique that may offer additional or alternative benefits to patients with ALS who are in respiratory failure. OBJECTIVE: The Diaphragm Pacing in patients with Amyotrophic Lateral Sclerosis (DiPALS) trial evaluated the effect of DP on survival over the study duration in patients with ALS with respiratory failure. DESIGN: The DiPALS trial was a multicentre, parallel-group, open-label, randomised controlled trial incorporating health economic analyses and a qualitative longitudinal substudy. PARTICIPANTS: Eligible participants had a diagnosis of ALS (ALS laboratory-supported probable, clinically probable or clinically definite according to the World Federation of Neurology revised El Escorial criteria), had been stabilised on riluzole for 30 days, were aged ≥ 18 years and were in respiratory failure. We planned to recruit 108 patients from seven UK-based specialist ALS or respiratory centres. Allocation was performed using 1 : 1 non-deterministic minimisation. INTERVENTIONS: Participants were randomised to either standard care (NIV alone) or standard care (NIV) plus DP using the NeuRX/4 DPS. MAIN OUTCOME MEASURES: The primary outcome was overall survival, defined as the time from randomisation to death from any cause. Secondary outcomes were patient quality of life [assessed by European Quality of Life-5 Dimensions, three levels (EQ-5D-3L), Short Form questionnaire-36 items and Sleep Apnoea Quality of Life Index questionnaire]; carer quality of life (EQ-5D-3L and Caregiver Burden Inventory); cost-utility analysis and health-care resource use; tolerability and adverse events. Acceptability and attitudes to DP were assessed in a qualitative substudy. RESULTS: In total, 74 participants were randomised into the trial and analysed, 37 participants to NIV plus pacing and 37 to standard care, before the Data Monitoring and Ethics Committee advised initial suspension of recruitment (December 2013) and subsequent discontinuation of pacing (on safety grounds) in all patients (June 2014). Follow-up assessments continued until the planned end of the study in December 2014. The median survival (interquartile range) was 22.5 months (lower quartile 11.8 months; upper quartile not reached) in the NIV arm and 11.0 months (6.7 to 17.0 months) in the NIV plus pacing arm, with an adjusted hazard ratio of 2.27 (95% confidence interval 1.22 to 4.25; p = 0.01). CONCLUSIONS: Diaphragmatic pacing should not be used as a routine treatment for patients with ALS in respiratory failure. FUTURE WORK: It may be that certain population subgroups benefit from DP. We are unable to explain the mechanism behind the excess mortality in the pacing arm, something the small trial size cannot help address. Future research should investigate the mechanism by which harm or benefit occurs further. TRIAL REGISTRATION: Current Controlled Trials ISRCTN53817913. FUNDING: This project was funded by the National Institute for Health Research Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 20, No. 45. See the HTA programme website for further project information. Additional funding was provided by the Motor Neurone Disease Association of England, Wales and Northern Ireland.
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Esclerosis Amiotrófica Lateral/complicaciones , Diafragma , Ventilación no Invasiva/métodos , Insuficiencia Respiratoria/etiología , Insuficiencia Respiratoria/terapia , Adulto , Anciano , Anciano de 80 o más Años , Análisis Costo-Beneficio , Femenino , Humanos , Estimación de Kaplan-Meier , Masculino , Persona de Mediana Edad , Calidad de VidaRESUMEN
OBJECTIVES: This study aimed to explore the decision-making process leading up to gastrostomy insertion from the perspective of the patients and their informal carers. Gastrostomy feeding is commonly used to support motor neurone disease patients with dysphagia. However, there is no robust evidence to suggest the optimal timing for gastrostomy insertion. METHODS: Retrospective qualitative exploration using semistructured interviews with paired patients and carers in order to elicit their perceptions in relation to gastrostomy timing. RESULTS: 27 patients consented to the study; of these, 23 underwent a successful gastrostomy. Approximately 3 months following a successful gastrostomy, 10 patients and 8 carers were interviewed. Decision-making in relation to the timing of gastrostomy was described as being a difficult process with individual variations and wishes. A range of factors acted as triggers for taking the decision to proceed with gastrostomy such as prolonged, tiring and effortful meals; the task of food preparation; choking and aspiration; and weight loss. Factors such as the reluctance to give up oral feeding, not realising the potential benefits and negative perceptions of gastrostomy influenced a decision to delay the procedure. A tendency for late insertion was identified despite the opposite advice by health professionals. CONCLUSIONS: The advice for early insertion does not outweigh the personal perceptions and psychosocial factors for patients and their carers. Understanding the factors which influence decision-making on an individual basis is important for information and care provision by healthcare professionals in aiding patients, and their carers, to make informed decisions in relation to gastrostomy timing.
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Actitud Frente a la Salud , Toma de Decisiones , Trastornos de Deglución/cirugía , Gastrostomía/psicología , Enfermedad de la Neurona Motora/complicaciones , Enfermedad de la Neurona Motora/psicología , Adulto , Anciano , Anciano de 80 o más Años , Cuidadores , Trastornos de Deglución/etiología , Trastornos de Deglución/psicología , Nutrición Enteral/métodos , Nutrición Enteral/psicología , Femenino , Humanos , Entrevistas como Asunto/métodos , Masculino , Persona de Mediana Edad , Cuidados Paliativos/métodos , Cuidados Paliativos/psicología , Investigación Cualitativa , Estudios Retrospectivos , Tiempo , Reino UnidoRESUMEN
BACKGROUND: The diagnosis of motor neurone disease (MND) has a profound effect on the functioning and well-being of both the patient and their family, with studies describing an increase in carer burden and depression as the disease progresses. AIM: This study aimed to assess whether patient use of noninvasive ventilation (NIV) impacted on their family carer, and to explore other sources of carer burden. DESIGN: The study used qualitative interviews and scaled measures of carer health and well-being completed at three monthly intervals until patient end of life. PARTICIPANTS: Sixteen family carers were followed up over a period ranging from one month to two years. RESULTS: NIV was perceived as having little impact on carer burden. The data however highlighted a range of sources of other burdens relating to the physical strain of caring. The Medical Outcomes Study Short Form (SF-36 Health Survey) Physical Component Summary (PCS) scores were considerably below that of the Mental Component Summary (MCS) score at baseline and at all following time points. Carers described the physical effort associated with patient care and role change; the challenge inherent in having time away; and problems relating to the timing of equipment and service delivery. CONCLUSIONS: NIV can be recommended to patients without concerns regarding increasing carer burden. The predominant source of burden described related to the physical impact of caring for a patient with MND. Services face challenges if this physical burden is to be reduced by providing equipment at an optimal time and successfully coordinating their input.
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Cuidadores/psicología , Costo de Enfermedad , Enfermedad de la Neurona Motora/enfermería , Ventilación no Invasiva/psicología , Anciano , Inglaterra , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , Estudios Longitudinales , Masculino , Persona de Mediana Edad , Enfermedad de la Neurona Motora/psicología , Investigación Cualitativa , Calidad de Vida/psicología , Encuestas y CuestionariosRESUMEN
This study aimed to examine the experiences of patients with motor neuron disease and their carers following the recommendation to use non-invasive ventilation (NIV). Qualitative interviews were carried out with 20 patients and 17 carers within one month of NIV being initiated. The study identified a range of potential barriers to usage including: adverse impressions of the technology; sleep disturbance; the sensation of pressure and pulsing; dry mouth; and mask design issues. Patients/carers perceived benefits related to: increased energy; improved sleeping; enhanced carer well-being; improved breathing and increased speech clarity. A key factor described by patients and carers was the need to persevere to overcome the challenges associated with early NIV use. The study highlights the importance of patient perceptions of gains as a factor in their NIV usage decisions. While recognizing that older individuals with limb-onset disease were over-represented in the sample, key recommendations from the study are: availability of easily accessible in-person support for patients; for clinicians to pre-empt potential obstacles by discussing options such as humidification or alternative mask interfaces; the importance of discussing potential benefits in detail with patients; and optimization of secretion management prior to NIV trial.
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Actitud Frente a la Salud , Cuidadores , Enfermedad de la Neurona Motora/diagnóstico , Enfermedad de la Neurona Motora/rehabilitación , Satisfacción del Paciente , Respiración Artificial , Adulto , Anciano , Femenino , Humanos , Masculino , Persona de Mediana Edad , Cooperación del PacienteRESUMEN
STUDY OBJECTIVE: This review was undertaken to determine the effectiveness of contraception service interventions for young people that were delivered in educational settings. DESIGN: We conducted a systematic review and narrative synthesis. SETTING: Interventions were included where they were delivered in educational institutions, including schools, colleges, and pupil referral units. PARTICIPANTS: Young people aged 19 and under. Studies of wider age groups were included if the majority of participants were aged under 19 years. INTERVENTIONS: We included interventions which consisted of contraceptive service provision, and also interventions to encourage young people to use existing contraceptive services. MAIN OUTCOME MEASURES: The main outcome measures used in the studies were: rate of teenage pregnancy, rate of contraceptive use, and sexual behavior. Many outcome measures were self reported. RESULTS: Twenty-nine papers were included which reported on interventions to prevent adolescent pregnancy (and repeat pregnancy), school-based health centers, contraceptive use in college students, and multicomponent interventions. Intensive case management intervention conducted by a culturally matched school-based social worker (along with other components including peer education) were shown to be effective in preventing repeat adolescent pregnancy, at least for the duration of the intervention. Also, school-based health centers appear to be most effective when contraception provision is made available on site. CONCLUSIONS: The evidence from these papers is limited, in terms of both quality and quantity, along with consistency of findings, but some recommendations in relation to effective interventions can be made.
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Servicios de Salud del Adolescente , Anticoncepción/estadística & datos numéricos , Educación del Paciente como Asunto , Embarazo en Adolescencia/prevención & control , Adolescente , Servicios de Planificación Familiar , Femenino , Humanos , Masculino , EmbarazoRESUMEN
RATIONALE, AIMS AND OBJECTIVES: Stroke care has been at the forefront of the drive to deliver health care by teamworking in the UK. Teamworking is the subject of ongoing audit of stroke provision with measures such as a weekly team meeting being used to evaluate services. A qualitative study was recently undertaken to explore these evaluations and to gain further understanding of the processes underlying teamworking practice. METHODS: Three case study sites across the stroke care pathway were investigated using data collection methods of fieldwork observation, interviews and visual imagery. The data were coded and analysed in an inductive process in parallel to the data gathering. RESULTS: It was found that teamworking practice was affected by organizational conditions, such as location of staff, time constraints, management structures and team contact. Other important aspects of teamworking related to the formation of subteams, decision-making processes, leadership, identification of goals, and training in teamworking. CONCLUSIONS: It is suggested that additional measures of team functioning are required. This paper highlights the importance of the organizational background with the need to consider team size, accountability and changing group membership. It discusses the decision-making systems and the need to more fully consider the role and purpose of team meetings.