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AIM: The aim was to examine the quality of online patient information resources for patients considering parastomal hernia treatment. METHODS: A Google search was conducted using lay search terms for patient facing sources on parastomal hernia. The quality of the content was assessed using the validated DISCERN instrument. Readability of written content was established using the Flesch-Kincaid score. Sources were also assessed against the essential content and process standards from the National Institute for Health and Care Excellence (NICE) framework for shared decision making support tools. Content analysis was also undertaken to explore what the sources covered and to identify any commonalities across the content. RESULTS: Fourteen sources were identified and assessed using the identified tools. The mean Flesch-Kincaid reading ease score was 43.61, suggesting that the information was difficult to read. The overall quality of the identified sources was low based on the pooled analysis of the DISCERN and Flesch-Kincaid scores, and when assessed against the criteria in the NICE standards framework for shared decision making tools. Content analysis identified eight categories encompassing 59 codes, which highlighted considerable variation between sources. CONCLUSIONS: The current information available to patients considering parastomal hernia treatment is of low quality and often does not contain enough information on treatment options for patients to be able to make an informed decision about the best treatment for them. There is a need for high-quality information, ideally co-produced with patients, to provide patients with the necessary information to allow them to make informed decisions about their treatment options when faced with a symptomatic parastomal hernia.
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Internet , Educação de Pacientes como Assunto , Humanos , Informação de Saúde ao Consumidor/normas , Estomas Cirúrgicos/efeitos adversos , Hérnia Incisional/cirurgia , Compreensão , HerniorrafiaRESUMO
BACKGROUND: People with chronic conditions experience functional impairment, lower quality of life, and greater economic hardship and poverty. Social isolation and loneliness are common for people with chronic conditions, with multiple co-occurring chronic conditions predicting an increased risk of loneliness. Peer support is a socially driven intervention involving people with lived experience of a condition helping others to manage the same condition, potentially offering a sense of connectedness and purpose, and experiential knowledge to manage disease. However, it is unclear what outcomes are important to patients across the spectrum of chronic conditions, what works and for whom. The aims of this review were to (1) collate peer support intervention components, (2) collate the outcome domains used to evaluate peer support, (3) synthesise evidence of effectiveness, and (4) identify the mechanisms of effect, for people with chronic conditions. METHODS: A systematic review of reviews was conducted. Reviews were included if they reported on formal peer support between adults or children with one or more chronic condition. Data were analysed using narrative synthesis. RESULTS: The search identified 6222 unique publications. Thirty-one publications were eligible for inclusion. Components of peer support were organised into nine categories: social support, psychological support, practical support, empowerment, condition monitoring and treatment adherence, informational support, behavioural change, encouragement and motivation, and physical training. Fifty-five outcome domains were identified. Quality of life, and self-efficacy were the most measured outcome domains identified. Most reviews reported positive but non-significant effects. CONCLUSIONS: The effectiveness of peer support is unclear and there are inconsistencies in how peers are defined, a lack of clarity in research design and intervention reporting, and widely variable outcome measurement. This review presents a range of components of peer support interventions that may be of interest to clinicians developing new support programmes. However, it is unclear precisely what components to use and with whom. Therefore, implementation of support in different clinical settings may benefit from participatory action research so that services may reflect local need.
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Aconselhamento , Qualidade de Vida , Adulto , Criança , Exercício Físico , Humanos , Grupo Associado , Apoio SocialRESUMO
PURPOSE: To develop an agreed upon set of outcomes known as a "core outcome set" (COS) for noninfectious uveitis of the posterior segment (NIU-PS) clinical trials. DESIGN: Mixed-methods study design comprising a systematic review and qualitative study followed by a 2-round Delphi exercise and face-to-face consensus meeting. PARTICIPANTS: Key stakeholders including patients diagnosed with NIU-PS, their caregivers, and healthcare professionals involved in decision-making for patients with NIU-PS, including ophthalmologists, nurse practitioners, and policymakers/commissioners. METHODS: A long list of outcomes was developed based on the results of (1) a systematic review of clinical trials of NIU-PS and (2) a qualitative study of key stakeholders including focus groups and interviews. The long list was used to generate a 2-round Delphi exercise of stakeholders rating the importance of outcomes on a 9-point Likert scale. The proportion of respondents rating each item was calculated, leading to recommendations of "include," "exclude," or "for discussion" that were taken to a face-to-face consensus meeting of key stakeholders at which they agreed on the final COS. MAIN OUTCOME MEASURE: Items recommended for inclusion in the COS for NIU-PS. RESULTS: A total of 57 outcomes grouped in 11 outcome domains were presented for evaluation in the Delphi exercise, resulting in 9 outcomes directly qualifying for inclusion and 15 outcomes being carried forward to the consensus meeting, of which 7 of 15 were agreed on for inclusion. The final COS contained 16 outcomes organized into 4 outcome domains comprising visual function, health-related quality of life, treatment side effects, and disease control. CONCLUSIONS: This study builds on international work across the clinical trials community and our qualitative research to construct the world's first COS for NIU-PS. The COS provides a list of outcomes that represent the priorities of key stakeholders and provides a minimum set of outcomes for use in all future NIU-PS clinical trials. Adoption of this COS can improve the value of future uveitis clinical trials and reduce noninformative research. Some of the outcomes identified do not yet have internationally agreed upon methods for measurement and should be the subject of future international consensus development.
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Ensaios Clínicos como Assunto/métodos , Determinação de Ponto Final/métodos , Avaliação de Resultados em Cuidados de Saúde/métodos , Uveíte Posterior/terapia , Adulto , Idoso , Cuidadores/psicologia , Consenso , Técnica Delphi , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Oftalmologistas/psicologia , Pacientes/psicologia , Qualidade de Vida , Projetos de Pesquisa , Revisões Sistemáticas como Assunto , Uveíte Posterior/diagnóstico , Uveíte Posterior/psicologia , Acuidade Visual/fisiologiaRESUMO
OBJECTIVE: To propose an empirically derived and theoretically-informed mechanism to explain how Community Health Workers (CHWs) bring about health gain in clients in England. METHODS: We undertook in-depth interviews (n = 43) with CHWs and service staff working in four case studies selected using maximum variation sampling. Interviewees were encouraged to talk about the service, how they had become involved with the service, the CHW role and relationship with clients. FINDINGS: We identified the provision of social support to be central to the mechanism of CHW-mediated health gain. Appropriate social support provision comprised three inter-related elements; needs assessment, social support delivery and client engagement. This mechanism is dependent on the personal characteristics of CHWs and of the roles they are employed or volunteer to carry out. CONCLUSION: A range of CHW characteristics can influence the social support process, but these are context-dependent and move beyond simple notions of CHW similarity to the client. This finding has important policy implications for the development and implementation of CHW services in high income countries with super-diverse populations.
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Serviços de Saúde Comunitária , Agentes Comunitários de Saúde , Promoção da Saúde/métodos , Apoio Social , Inglaterra , Humanos , Entrevistas como Assunto , Avaliação das Necessidades , Estudos de Casos OrganizacionaisRESUMO
Primary surgical abdominal wounds are usually covered with a dressing. However, little is known about the practical issues and costs around these dressings. This study aimed to provide an in-depth description of patients' and health professionals' perspectives on the clinical and practical issues associated with standard and novel dressing (glue-as-a-dressing) use on primary surgical wounds, and to establish whether and how their experience compares with these perspectives. During semi-structured interviews, patients and health professionals discussed their positive experience of glue-as-a-dressing and no dressing around six themes: wound contamination and infection, wound healing, wound care, physical protection afforded by simple dressings, the potential psychological impact of an exposed wound, and ability to carry out everyday tasks. Current views on the practice of dressings for primary abdominal wounds are influenced by ingrained clinical practice. These views can be challenged when exposed to novel dressing strategies or as new evidence of the clinical effect of dressing strategies emerges.
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Abdome/cirurgia , Bandagens , Pessoal de Saúde/psicologia , Pacientes/psicologia , Ferida Cirúrgica/terapia , Adolescente , Adulto , Atitude do Pessoal de Saúde , Atitude Frente a Saúde , Feminino , Pessoal de Saúde/estatística & dados numéricos , Humanos , Masculino , Pacientes/estatística & dados numéricos , Pesquisa QualitativaRESUMO
BACKGROUND: Non-infectious uveitis describes a heterogenous group of ocular disorders characterised by intraocular inflammation in the absence of infection. Uveitis is a leading cause of visual loss, most commonly due to uveitic macular oedema (UMO). Treatment is aimed at reducing disease activity by suppression of the intraocular inflammatory response. In the case of macular oedema, the aim is to restore macular architecture as quickly as possible, in order to prevent irreversible photoreceptor damage in this area. Acute exacerbations are typically managed with corticosteroids, which may be administered topically, locally or systemically. Whilst these are often rapidly effective in achieving disease control, long-term use is associated with significant local and systemic side effects, and 'steroid sparing agents' are typically used to achieve prolonged control in severe or recalcitrant disease. Anti-tumour necrosis factor (TNF) drugs block a critical cytokine in the inflammatory signalling process, and have emerged as effective steroid-sparing immunomodulatory agents in a wide range of non-ocular conditions. There is mechanistic data to suggest that they may provide a more targeted approach to disease control in UMO than other agents, but to date, these agents have predominantly been used 'off label' as the majority are not licensed for ocular use. This review aims to summarise the available literature reporting the use of anti-TNF therapy in UMO, thus developing the evidence-base on which to make future treatment decisions and develop clinical guidelines in this area. OBJECTIVES: To assess the efficacy of anti-TNF therapy in treatment of UMO. SEARCH METHODS: We searched the Cochrane Central Register of Controlled Trials (CENTRAL; 2018, Issue 2), which contains the Cochrane Eyes and Vision Trials Register; Ovid MEDLINE; Ovid Embase; LILACS; Web of Science Conference Proceedings Citation Index- Science (CPCI-S); System for Information on Grey Literature in Europe (OpenGrey); the ISRCTN registry; ClinicalTrials.gov and the WHO ICTRP. The date of the search was 29 March 2018. SELECTION CRITERIA: We planned to include all relevant randomised controlled trials assessing the use of anti-TNF agents in treatment of UMO. No limits were applied to participant age, gender or ethnicity. The primary comparisons of this review were: anti-TNF versus no treatment or placebo; anti-TNF versus another pharmacological agent; comparison of different anti-TNF drugs; comparison of different doses and routes of administration of the same anti-TNF drug. The primary outcome measure that we assessed for this review was best-corrected visual acuity (BCVA) in the treated eye. Secondary outcome measures were anatomical macular change, clinical estimation of vitreous haze and health-related quality of life. DATA COLLECTION AND ANALYSIS: Two review authors independently screened titles and abstracts retrieved through the database searches. We retrieved full-text reports of studies categorised as 'unsure' or 'include' after we had reviewed the abstracts. Two review authors independently reviewed each full-text report for eligibility. We resolved discrepancies through discussion. MAIN RESULTS: We identified no completed or ongoing trial that was eligible for this Cochrane Review. AUTHORS' CONCLUSIONS: Our review did not identify any evidence from randomised controlled trials for or against the role of anti-TNF agents in the management of UMO. Although there are a number of high-quality randomised controlled trials that demonstrate the efficacy of anti-TNF agents in preventing recurrence of inflammation in uveitis, the reported study outcomes do not include changes in UMO. As a result, there were insufficient data to conclude whether there was a significant treatment effect specifically for UMO. Future trials should be designed to include quantitative measures of UMO as primary study outcomes, for example by reporting the presence or absence of UMO, or by measuring central macular thickness for study participants. Furthermore, whilst UMO is an important complication of uveitis, we acknowledge that uveitis is associated with many significant structural and functional complications. It is not possible to determine treatment efficacy based on a single outcome measure. We recommend that future reviews of therapeutic interventions in uveitis should use composite measures of treatment response comprising a range of potential complications of disease.
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Edema Macular/tratamento farmacológico , Fator de Necrose Tumoral alfa/antagonistas & inibidores , Uveíte/complicações , Humanos , Edema Macular/etiologia , Uso Off-LabelRESUMO
Objectives: To develop an empirically-informed reporting taxonomy for Community Health Worker (CHW) services to address concerns about the transparency and consistency of descriptions of these interventions in the existing literature. Methods: We undertook in-depth interviews (n = 43) with CHWs and service staff working in four case studies selected using maximum variation sampling. Interviewees were encouraged to talk about the service, how they had become involved with the service, the CHW role and relationship with clients. Results: Thematic analysis identified recurrent cross-case observations which we classed as 'who CHW are' and 'what CHW do'. CHW's personal characteristics comprised the sub-groups knowledge and skills, personal qualities, similarity to client and voluntary/paid status; role characteristics comprised time and continuity, settings, limited responsibility, core task and enacted philosophies. Conclusions: We have developed a conceptual framework for reporting CHW interventions based on the existing literature and our own empirical work. Compared with existing work in the field, the taxonomy uses nomenclature that minimizes current overlap and confusion, and provides a more complete description of CHW characteristics.
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Serviços de Saúde Comunitária/classificação , Agentes Comunitários de Saúde/classificação , Inglaterra , Humanos , Entrevistas como AssuntoRESUMO
Background: The Health Trainers Service is one of the few public health policies where a bespoke database-the Data Collection and Reporting System (DCRS)-was developed to monitor performance. We seek to understand the context within which local services and staff have used the DCRS and to consider how this might influence interpretation of collected data. Methods: In-depth case studies of six local services purposively sampled to represent the range of service provider arrangements, including detailed interviews with key stakeholders (n = 118). Results: Capturing detailed information on activity with clients was alien to many health trainers' work practices. This related to technical challenges, but it also ran counter to beliefs as to how a 'lay' service would operate. Interviewees noted the inadequacy of the dataset to capture all client impacts; that is, it did not enable them to input information about issues a client living in a deprived neighbourhood might experience and seek help to address. Conclusions: The utility of the DCRS may be compromised both by incomplete ascertainment of activity and by incorrect data inputted by some Health Trainers. The DCRS is also underestimate the effectiveness of work health trainers have undertaken to address 'upstream' factors affecting client health.
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Serviços de Saúde Comunitária , Coleta de Dados/métodos , Disparidades nos Níveis de Saúde , Serviços Preventivos de Saúde , Indicadores de Qualidade em Assistência à Saúde , Confiabilidade dos Dados , Promoção da Saúde/organização & administração , Entrevistas como Assunto , Estudos de Casos Organizacionais , Pesquisa QualitativaRESUMO
CONTEXT: The challenge of ensuring 'fair' selection processes confronts all medical schools around the globe. In the UK, historical analyses suggest applicants who are male, non-White, and from less advantaged socio-economic and school backgrounds have been less likely to be offered a place at medical school. We provide a contemporary population-based longitudinal analysis of the likelihood of receiving an offer to read medicine in the UK stratified by key socio-demographic characteristics. METHODS: We calculated the likelihood of receiving an offer among applicants to UK medical schools during 1996-2012, adjusted for sex, ethnicity, schooling, parental occupation, educational attainment and year of application. To investigate differences across time, models were fitted with interactions between application year and each of the other explanatory variables. RESULTS: There were 154 957 applicants, including 86 361 females (55.7%) and 68 596 males (44.3%). The majority of applicants were White (n = 94 519, 61.0%). The most common parental occupation category was higher managerial and professional (HMP) (n = 60 167, 38.8%) and 68 313 (44.1%) applicants came from grammar and independent schools. The likelihood of receiving an offer to study medicine varied three-fold across the study period, peaking in 2001 against the 1996 baseline (odds ratio [OR] 2.94, 95% confidence interval [CI] 2.78-3.11; p < 0.001). Throughout the study period, female applicants (OR 1.21, 95% CI 1.19-1.24; p < 0.001), those from more advantaged family backgrounds (OR 1.26, 95% CI 1.24-1.29; p < 0.001), and applicants who had attended independent or grammar schools (OR 1.25, 95% CI 1.23-1.28; p < 0.001) were more likely to receive an offer. Compared with Asian, Black and Other ethnic groups, White applicants had a greater likelihood of receiving an offer, with ORs of 1.56 (95% CI 1.54-1.61), 2.33 (95% CI 2.17-2.50) and 1.45 (95% CI 1.39-1.51), respectively. Differences in odds between White and non-White applicants reduced slightly during the study period but the overall advantage for White applicants persisted. The advantage for female applicants diminished markedly from 2007 onward. There was no clear trend in the advantage for students from HMP families, but from 2005 onward the odds of success for applicants with grammar and independent school backgrounds increased. CONCLUSIONS: Despite efforts to make selection processes more equitable, our findings suggest that persistent advantages remain for some demographic factors.
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Educação de Graduação em Medicina/estatística & dados numéricos , Critérios de Admissão Escolar/estatística & dados numéricos , Faculdades de Medicina/estatística & dados numéricos , Escolaridade , Etnicidade/estatística & dados numéricos , Feminino , Humanos , Estudos Longitudinais , Masculino , Fatores Sexuais , Classe Social , Estudantes de Medicina/estatística & dados numéricos , Reino UnidoRESUMO
CONTEXT: Medical schools are increasingly using novel tools to select applicants. The UK Clinical Aptitude Test (UKCAT) is one such tool and measures mental abilities, attitudes and professional behaviour conducive to being a doctor using constructs likely to be less affected by socio-demographic factors than traditional measures of potential. Universities are free to use UKCAT as they see fit but three broad modalities have been observed: 'borderline', 'factor' and 'threshold'. This paper aims to provide the first longitudinal analyses assessing the impact of the different uses of UKCAT on making offers to applicants with different socio-demographic characteristics. METHODS: Multilevel regression was used to model the outcome of applications to UK medical schools during the period 2004-2011 (data obtained from UCAS), adjusted for sex, ethnicity, schooling, parental occupation, educational attainment, year of application and UKCAT use (borderline, factor and threshold). RESULTS: The three ways of using the UKCAT did not differ in their impact on making the selection process more equitable, other than a marked reversal for female advantage when applied in a 'threshold' manner. Our attempt to model the longitudinal impact of the use of the UKCAT in its threshold format found again the reversal of female advantage, but did not demonstrate similar statistically significant reductions of the advantages associated with White ethnicity, higher social class and selective schooling. CONCLUSION: Our findings demonstrate attenuation of the advantage of being female but no changes in admission rates based on White ethnicity, higher social class and selective schooling. In view of this, the utility of the UKCAT as a means to widen access to medical schools among non-White and less advantaged applicants remains unproven.
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Testes de Aptidão/normas , Critérios de Admissão Escolar/estatística & dados numéricos , Estudantes de Medicina/estatística & dados numéricos , Adolescente , Avaliação Educacional , Feminino , Humanos , Estudos Longitudinais , Masculino , Faculdades de Medicina/organização & administração , Faculdades de Medicina/estatística & dados numéricos , Classe Social , Reino Unido , Adulto JovemRESUMO
UNLABELLED: Policy Points: In 2004, England's National Health Service introduced health trainer services to help individuals adopt healthier lifestyles and to redress national health inequalities. Over time these anticipated community-focused services became more NHS-focused, delivering "downstream" lifestyle interventions. At the same time, individuals' lifestyle choices were abstracted from the wider social determinants of health and the potential to address inequalities was diminished. While different service models are needed to engage hard-to-reach populations, the long-term sustainability of any new service model depends on its aligning with the established medical system's characteristics. CONTEXT: In 2004, the English Public Health White Paper Choosing Health introduced "health trainers" as new members of the National Health Service (NHS) workforce. Health trainers would offer one-to-one peer-support to anyone who wished to adopt and maintain a healthier lifestyle. Choosing Health implicitly envisaged health trainers working in community settings in order to engage "hard-to-reach" individuals and other groups who often have the poorest health but who engage the least with traditional health promotion and other NHS services. METHODS: During longitudinal case studies of 6 local health trainer services, we conducted in-depth interviews with key stakeholders and analyzed service activity data. FINDINGS: Rather than an unproblematic and stable implementation of community-focused services according to the vision in Choosing Health, we observed substantial shifts in the case studies' configuration and delivery as the services embedded themselves in the local NHS systems. To explain these observations, we drew on a recently proposed conceptual framework to examine and understand the adoption and diffusion of innovations in health care systems. CONCLUSIONS: The health trainer services have become more "medicalized" over time, and in doing so, the original theory underpinning the program has been threatened. The paradox is that policymakers and practitioners recognize the need to have a different service model for traditional NHS services if they want hard-to-reach populations to engage in preventive actions as a first step to redress health inequalities. The long-term sustainability of any new service model, however, depends on its aligning with the established medical system's (ie, the NHS's) characteristics.
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Promoção da Saúde/métodos , Atenção à Saúde/organização & administração , Pessoal de Saúde/organização & administração , Promoção da Saúde/organização & administração , Humanos , Entrevistas como Assunto , Estudos de Casos Organizacionais , Grupo Associado , Medicina Estatal/organização & administração , Reino UnidoRESUMO
OBJECTIVES: To perform a retrospective, anesthesia case note review of patients with Fraser syndrome. AIM: To identify the perioperative and postoperative anesthetic management and complications in this patient group. BACKGROUND: Fraser syndrome is a rare, autosomal recessively inherited disorder characterized by cryptophthalmos, cutaneous syndactyly, and ambiguous genitalia. It also has variable association with cardiac, laryngeal, tracheal, and gastrointestinal abnormalities. Children with Fraser syndrome present for a variety of surgical and radiological procedures, and there are a number of single case reports in the literature. METHODS: A retrospective case note review was undertaken on 10 children with Fraser syndrome who presented to our institution over a 30-year period. Analysis of the medical notes and general anesthetic records was undertaken, and the conduct of anesthesia, spectrum of disease, genetic markers, and perioperative complications were recorded. There were a total of 125 procedures performed under general anesthesia during this period. RESULTS: There were a total of ten anesthetic complications in the review, all related to management of the airway. There were two accidental extubations, five recorded incidents of airway obstruction (which were relieved with continuous positive airway pressure (CPAP)) and one posttracheostomy airway bleed. One child was a difficult intubation requiring an ID 2.5 mm oral endotracheal tube (ETT), and one child was an impossible intubation that required an emergency tracheostomy to secure the airway. CONCLUSIONS: There was a low incidence of complications with this group of patients. However, there is a relatively high incidence of difficult or impossible tracheal intubation (20%) due to glottic stenosis and one patient required an emergency tracheostomy despite no previous clinical evidence of airway narrowing.
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Anestesia Geral/efeitos adversos , Anestesia Geral/métodos , Síndrome de Fraser/cirurgia , Adolescente , Manuseio das Vias Aéreas , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Assistência Perioperatória , Cuidados Pós-Operatórios , Complicações Pós-Operatórias/epidemiologia , Complicações Pós-Operatórias/terapia , Estudos RetrospectivosRESUMO
OBJECTIVE: Mental health problems are a leading and increasing cause of health-related burden in children across the world. Peer support interventions are increasingly used to meet this need using the lived experience of people with a history of mental health problems. However, much of the research underpinning this work has focused on adults, leaving a gap in knowledge about how these complex interventions may work for different children in different circumstances. Realist research may help us to understand how such complex interventions may trigger different mechanisms to produce different outcomes in children. This paper reports on an important first step in realist research, namely the construction of an embryonic initial programme theory to help 'focus' realist evaluation exploring how children's peer support services work in different contexts to produce different outcomes in the West Midlands (UK). METHODS: A survey and preliminary semi-structured realist interviews were conducted with 10 people involved in the delivery of peer support services. Realist analysis was carried out to produce context-mechanism-outcome configurations (CMOC). RESULTS: Analysis produced an initial programme theory of peer support for children's mental health. This included 12 CMOCs. Important outcomes identified by peer support staff included hope, service engagement, wellbeing, resilience, and confidence; each generated by different mechanisms including contextualisation of psychoeducation, navigating barriers to accessing services, validation, skill development, therapeutic relationship, empowerment, and reducing stigma. CONCLUSION: These data lay the groundwork for designing youth mental health realist research to evaluate with nuance the complexities of what components of peer support work for whom in varying circumstances.
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BACKGROUND: Uveitis comprises a range of conditions that result in intraocular inflammation. Most sight-threatening uveitis falls into the broad category known as Non-infectious Posterior Segment-Involving Uveitis (PSIU). To evaluate treatments, trialists and clinicians must select outcome measures. The aim of this study was to understand healthcare professionals' perspectives on what outcomes are important to adult patients with PSIU and their carers. METHODS: Twelve semi-structured telephone interviews were undertaken to understand the perspectives of healthcare professionals. Interviews were audio recorded, transcribed and thematically analysed. Findings were compared with the views of patients and carers and outcomes abstracted from a previously published systematic review. RESULTS: Eleven core domains were identified as important to healthcare professionals: (1) visual function, (2) symptoms, (3) functional ability, (4) impact on relationships, (5) financial impact, (6) psychological morbidity and emotional well-being (7) psychosocial adjustment to uveitis, (8) doctor / patient / interprofessional relationships and access to health care, (9) treatment burden, (10) treatment side effects, (11) disease control. Healthcare professionals recognised a similar range of domains to patients and carers but placed more emphasis on certain outcomes, particularly in the disease control domain. In contrast the range of outcomes identified via the systematic review was limited. CONCLUSION: Healthcare professionals recognise all of the published outcome domains as patients/carers in the previous publication but with subtly differing emphasis within some domains and with a priority for certain types of measures. Healthcare professionals discussed the disease control and side effects/complications to a greater degree than patients and carers in the focus groups.
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Pessoal de Saúde , Uveíte , Adulto , Humanos , Pesquisa Qualitativa , Grupos Focais , Pessoal de Saúde/psicologia , Cuidadores , Relações Médico-Paciente , Uveíte/terapiaRESUMO
BACKGROUND: Growth hormone deficiency (GHD) is the commonest endocrine cause of short stature and may occur in isolation (I-GHD) or combined with other pituitary hormone deficiencies. Around 500 children are diagnosed with GHD every year in the UK, of whom 75% have I-GHD. Growth hormone (GH) therapy improves growth in children with GHD, with the goal of achieving a normal final height (FH). GH therapy is given as daily injections until adult FH is reached. However, in many children with I-GHD their condition reverses, with a normal peak GH detected in 64-82% when re-tested at FH. Therefore, at some point between diagnosis and FH, I-GHD must have reversed, possibly due to increase in sex hormones during puberty. Despite increasing evidence for frequent I-GHD reversal, daily GH injections are traditionally continued until FH is achieved. METHODS/DESIGN: Evidence suggests that I-GHD children who re-test normal in early puberty reach a FH comparable to that of children without GHD. The GHD Reversal study will include 138 children from routine endocrine clinics in twelve UK and five Austrian centres with I-GHD (original peak GH < 6.7 mcg/L) whose deficiency has reversed on early re-testing. Children will be randomised to either continue or discontinue GH therapy. This phase III, international, multicentre, open-label, randomised controlled, non-inferiority trial (including an internal pilot study) will assess whether children with early I-GHD reversal who stop GH therapy achieve non-inferior near FH SDS (primary outcome; inferiority margin 0.55 SD), target height (TH) minus near FH, HRQoL, bone health index and lipid profiles (secondary outcomes) than those continuing GH. In addition, the study will assess cost-effectiveness of GH discontinuation in the early retesting scenario. DISCUSSION: If this study shows that a significant proportion of children with presumed I-GHD reversal generate enough GH naturally in puberty to achieve a near FH within the target range, then this new care pathway would rapidly improve national/international practice. An assumed 50% reversal rate would provide potential UK health service cost savings of £1.8-4.6 million (2.05-5.24 million)/year in drug costs alone. This new care pathway would also prevent children from having unnecessary daily GH injections and consequent exposure to potential adverse effects. TRIAL REGISTRATION: EudraCT number: 2020-001006-39.
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Procedimentos Clínicos , Hormônio do Crescimento , Adulto , Criança , Humanos , Áustria , Redução de Custos , Custos de MedicamentosRESUMO
AIM: To examine public perspectives on lateral flow testing (LFT) for COVID-19. DESIGN: Online survey with nested semi-structured interviews. SETTING: Birmingham, UK. PARTICIPANTS: 220 Birmingham residents, 21 of whom took part in an interview. RESULTS: Fifty-six per cent of respondents had taken an LFT. Reasons for not testing included adherence to other government COVID-19 guidance, having had a vaccination and not thinking LFTs were accurate. In 16% of households with children nobody, including children, was testing. In households where children were testing, their parents or other adults were often not. Those who were testing and eligible for workplace and school testing were more likely to be testing twice weekly. In other settings, respondents were more likely to be testing on a one-off or ad hoc basis. Approximately half of respondents said that they were likely to visit friends and family after a negative test result and 10% that they were unlikely to self-isolate following a positive test result. In interviews, participants who were testing described the peace of mind that testing afforded them prior to activities or interactions with family and friends, including those they considered to be vulnerable. Interviewees who were not testing described concerns about test accuracy and also cited a lack of face-to-face interaction with others precluding the need to test. Participants were often testing flexibly according to circumstances and perceived risk of COVID-19 transmission. CONCLUSIONS: While some choose not to test, others are doing so in order to provide peace of mind to engage in personal interactions they might otherwise have avoided. This peace of mind may be a necessary pre-requisite for some to more fully re-engage in pre-pandemic activities. Despite clear concerns about test accuracy among those not testing, those who are testing held generally positive attitudes towards the continued use of LFTs.
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COVID-19 , Adulto , COVID-19/diagnóstico , COVID-19/epidemiologia , COVID-19/prevenção & controle , Criança , Humanos , Pesquisa Qualitativa , SARS-CoV-2 , Inquéritos e Questionários , Reino UnidoRESUMO
OBJECTIVE: Paediatric burn injuries present physical and psychosocial effects for children and their parents, including disruption to family life. Some burns services in the UK enable parents to administer dressing changes at home to reduce the number of hospital visits. To date, there is no research on parents' experiences of administering dressing changes. The aim of this study was to describe parents' experiences of administering dressing changes in paediatric burns aftercare. METHODS: Semi-structured research interviews were conducted with a purposive sample of parents recruited from a paediatric burns centre in the UK. The interview addressed the initial offer of at-home dressing changes by clinicians; parental decision-making in relation to dressing changes; training and support received; and the experience of administering dressing changes, including practical and emotional considerations. Thematic analysis of the data was informed by the framework approach, including associative analysis using demographic and clinical characteristics. RESULTS: Seventeen participants were interviewed. Three themes of parents' experiences of administering dressing changes were identified including (1) Parental Identity concerning the newly undertaken responsibility and the impact on the parental role; (2) Challenges, physical or emotional, confronted or lessened by administering dressing changes; and (3) Reassurance provided by healthcare professionals and others to support parents to adopt and maintain parent-administered dressing changes. CONCLUSION: The qualitative data reported here indicates that parents want to be involved in their child's care by administering dressing changes at home, provided they receive sufficient reassurance that they are able to manage the severity of their child's burn. Parents' concerns about the effectiveness of their dressing changes lacks empirical basis, and this study provides preliminary data to support the development and evaluation of best practice guidance for parent-administered dressing changes in paediatric burns aftercare.
Assuntos
Assistência ao Convalescente , Queimaduras , Bandagens , Queimaduras/terapia , Criança , Humanos , Pais/psicologia , Pesquisa QualitativaRESUMO
BACKGROUND: The support provided by people with the same condition, including inflammatory bowel diseases (IBD), has the potential to improve a range of psychosocial outcomes by allowing people with the disease to receive emotional support as well as to learn coping strategies from more experienced peers. The aim of this systematic review was to summarise the evidence on peer support interventions and their effectiveness on people with IBD. METHODS: Bibliographic databases, conference proceedings, grey literature, and clinical trial registers were searched from inception to November 2021. Comparative and single-arm studies that evaluated interventions that were solely or contained in part peer support, for people with IBD and/or their carers of any age and in any setting were included. Effectiveness was evaluated using outcomes relating to physical and psychosocial function, disease control and healthcare utilisation. Data for each outcome were tabulated and presented in a narrative synthesis. Study design specific tools were used to assess risk of bias. Study selection and risk of bias assessment were undertaken by two reviewers independently. RESULTS: Fourteen completed studies and five ongoing studies met the inclusion criteria. Substantial heterogeneity was observed in the studies in relation to the intervention type and peer support was usually part of a wider intervention. All but one study analysed the total effect of the intervention, so it was not possible to fully isolate the effect of the peer support alone. The appropriateness of outcomes and outcome measurement tools for the assessment of effects was a further key issue. As such, overall, no significant evidence of beneficial effects of peer support interventions on quality of life and other psychosocial outcomes was found. CONCLUSIONS: New randomised controlled trials designed to isolate the effects of peer support are needed to evaluate the (net) effects of peer support only. Agreement on the outcomes to be targeted, and the choice of reliable and validated measurement tools for standalone peer support interventions would provide a focus for further intervention design and evaluation. SYSTEMATIC REVIEW REGISTRATION: The protocol was accepted in the international prospective register of systematic reviews (PROSPERO CRD42020168817).
Assuntos
Cuidadores , Doenças Inflamatórias Intestinais , Cuidadores/psicologia , Doença Crônica , Humanos , Doenças Inflamatórias Intestinais/terapia , Qualidade de Vida/psicologiaRESUMO
OBJECTIVE: Following paediatric burn injury, dressings are initially changed in outpatient clinics, necessitating regular visits with substantial burden for parents, children and services. This can potentially be lessened if some parents go on to administer dressing changes for their child at home. However, a lack of data regarding support for parent-administered dressing changes is present. The aim of this study was to describe current practice and views regarding at-home parent-administered dressing changes (PAD) in the UK. METHODS: An online survey was distributed to 20 paediatric burns services in England and Wales. The survey used fixed and free-text responses to collect data on whether PAD is offered and the reasons for this; patient and parent eligibility criteria; training and support; and respondents?" views on the advantages and disadvantages of PAD. Analysis comprised simple descriptive statistics and simple content analysis of free-text responses. RESULTS: Thirteen responses were received (response rate = 65%). Eleven respondents indicated their service offers PAD. Two respondents reported their service does not offer PAD due to alternative nurse outreach appointments (n = 1), and service resource limitations (n = 1), though another respondent indicated service cost savings. Twelve respondents regard PAD positively (n = 8) or very positively (n = 4). Most respondents reported that 10% or fewer parents refuse PAD when offered (n = 7). Perceived advantages of PAD included reduced travel burden (n = 9), patient better able to cope with dressing changes (n = 8), better school and work attendance for child and parent respectively (n = 6), and reduced financial impact on families (n = 4). No formal eligibility criteria for PAD are extant, though 5 respondents described informal criteria in place in their service, predominantly involving dressing frequency (n = 5), and size or complexity of wound (n = 4). CONCLUSION: The survey indicates that most paediatric burns services support PAD. However, the absence of formal eligibility criteria, and informal criteria open to interpretation, risks inequity of support received by children and their families. Further research should evaluate whether this inequity extends to variable clinical outcomes to determine what works for who and under what circumstances when supporting parents in paediatric burns aftercare.