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1.
Sociol Health Illn ; 44(2): 290-307, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-34862794

RESUMO

Online review and rating sites, where patients can leave feedback on their experience of the health-care encounter, are becoming an increasing feature of primary care in the NHS. Previous research has analysed how digital surveillance is re-shaping the clinical gaze, as health-care professionals are subject to increased public monitoring. Here, we draw on an empirical study of 41 GP practice staff to show how the gaze is turning, not simply from the patient to the health-care provider, but additionally to the body politic of the NHS. Drawing on focus group and interview data conducted in five UK practices, we show how discourses of online reviews and ratings are producing new professional subjectivities among health-care professionals and the extent to which the gaze extends not only to individual health-care interactions but to the health-care service writ large. We identify three counter-discourses characterising the evolving ways in which online reviews and ratings are creating new subjects in primary care practices: victimhood, prosumption versus traditional values and taking control. We show how the ways in which staff speak about online feedback are patterned by the social environment in which they work and the constraints of the NHS they encounter on a day-to-day basis.


Assuntos
Atenção à Saúde , Medicina Estatal , Retroalimentação , Grupos Focais , Pessoal de Saúde , Humanos
2.
Child Care Health Dev ; 48(4): 578-587, 2022 07.
Artigo em Inglês | MEDLINE | ID: mdl-35023213

RESUMO

BACKGROUND: Cerebral palsy (CP) is the most common childhood physical disability in developed countries. Parents of children with CP experience difficulties that can result in reduced well-being. Health professionals supporting children with CP have been encouraged to focus on parental well-being as this forms part of the child's essential environment. There is a lack of evidence about interventions that holistically support the whole family by providing therapeutic input for the child and support for parents. This study aimed to explore parents' experiences of play-based groups for children with CP and their parents, with a focus on the groups' impact on parents' well-being. METHODS: Parents of children with CP who had attended play-based groups in the year prior were recruited for this qualitative study. Semi-structured interviews were conducted, audio-recorded and transcribed verbatim. Participants' demographic characteristics were collected as contextual information. Data were analysed using an inductive thematic approach. RESULTS: Ten mothers were interviewed. Overall, mothers had positive experiences of the groups and perceived them as an important influence on their well-being. Four themes described mothers' experiences of the groups and the subsequent impact on their well-being: (1) practical support, (2) connecting with others, (3) transitioning journeys and (4) different motivators, different experiences. Numerous factors influenced mothers' experiences of attending the groups and the subsequent impact on their well-being. This included mothers' individual experiences of having a child with CP. CONCLUSIONS: Interventions combining practical and social support for the whole family can have a positive impact on the well-being of mothers of children with CP. Care should be taken to provide individualised support for each family. There is no 'one-size-fits-all' approach, and a package of care can provide multiple services that meet the varying needs of mothers and their children with CP.


Assuntos
Paralisia Cerebral , Mães , Paralisia Cerebral/terapia , Criança , Feminino , Humanos , Pais , Pesquisa Qualitativa , Apoio Social
3.
BMC Med ; 18(1): 49, 2020 03 13.
Artigo em Inglês | MEDLINE | ID: mdl-32164681

RESUMO

BACKGROUND: Social prescribing is a way of addressing the 'non-medical' needs (e.g. loneliness, debt, housing problems) that can affect people's health and well-being. Connector schemes (e.g. delivered by care navigators or link workers) have become a key component to social prescribing's delivery. Those in this role support patients by either (a) signposting them to relevant local assets (e.g. groups, organisations, charities, activities, events) or (b) taking time to assist them in identifying and prioritising their 'non-medical' needs and connecting them to relevant local assets. To understand how such connector schemes work, for whom, why and in what circumstances, we conducted a realist review. METHOD: A search of electronic databases was supplemented with Google alerts and reference checking to locate grey literature. In addition, we sent a Freedom of Information request to all Clinical Commissioning Groups in England to identify any further evaluations of social prescribing connector schemes. Included studies were from the UK and focused on connector schemes for adult patients (18+ years) related to primary care. RESULTS: Our searches resulted in 118 included documents, from which data were extracted to produce context-mechanism-outcome configurations (CMOCs). These CMOCs underpinned our emerging programme theory that centred on the essential role of 'buy-in' and connections. This was refined further by turning to existing theories on (a) social capital and (b) patient activation. CONCLUSION: Our realist review highlights how connector roles, especially link workers, represent a vehicle for accruing social capital (e.g. trust, sense of belonging, practical support). We propose that this then gives patients the confidence, motivation, connections, knowledge and skills to manage their own well-being, thereby reducing their reliance on GPs. We also emphasise within the programme theory situations that could result in unintended consequences (e.g. increased demand on GPs).


Assuntos
Gerenciamento Clínico , Prescrições/normas , Atenção Primária à Saúde/normas , Humanos
4.
J Med Internet Res ; 22(11): e18218, 2020 11 09.
Artigo em Inglês | MEDLINE | ID: mdl-33164902

RESUMO

BACKGROUND: Increasingly, consultations in health care settings are conducted remotely using a range of communication technologies. Email allows for 2-way text-based communication, occurring asynchronously. Studies have explored the content and nature of email consultations to understand the use, structure, and function of email consultations. Most previous content analyses of email consultations in primary care settings have been conducted in North America, and these have shown that concerns and assumptions about how email consultations work have not been realized. There has not been a UK-based content analysis of email consultations. OBJECTIVE: This study aims to explore and delineate the content of consultations conducted via email in English general practice by conducting a content analysis of email consultations between general practitioners (GPs) and patients. METHODS: We conducted a content analysis of anonymized email consultations between GPs and patients in 2 general practices in the United Kingdom. We examined the descriptive elements of the correspondence to ascertain when the emails were sent, the number of emails in an email consultation, and the nature of the content. We used a normative approach to analyze the content of the email consultations to explore the use and function of email consultation. RESULTS: We obtained 100 email consultations from 85 patients, which totaled 262 individual emails. Most email users were older than 40 years, and over half of the users were male. The email consultations were mostly short and completed in a few days. Emails were mostly sent and received during the day. The emails were mostly clinical in content rather than administrative and covered a wide range of clinical presentations. There were 3 key themes to the use and function of the email consultations: the role of the GP and email consultation, the transactional nature of an email consultation, and the operationalization of an email consultation. CONCLUSIONS: Most cases where emails are used to have a consultation with a patient in general practice have a shorter consultation, are clinical in nature, and are resolved quickly. GPs approach email consultations using key elements similar to that of the face-to-face consultation; however, using email consultations has the potential to alter the role of the GP, leading them to engage in more administrative tasks than usual. Email consultations were not a replacement for face-to-face consultations.


Assuntos
Correio Eletrônico/instrumentação , Pacientes/psicologia , Atenção Primária à Saúde/ética , Adulto , Comunicação , Feminino , Humanos , Masculino , Encaminhamento e Consulta
5.
Health Expect ; 22(4): 721-730, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-30927334

RESUMO

BACKGROUND: Funders, policy-makers and research organizations increasingly expect health researchers in the UK to involve patients and members of the public in research. It has been stated that it makes research "more effective, more credible and often more cost efficient." However, the evidence base for this assertion is evolving and can be limited. There has been little research into how health researchers feel about involving people, how they go about it, how they manage formal policy rhetoric, and what happens in practice. OBJECTIVE: To explore researchers' experiences and perceptions of patient and public involvement (PPI). METHODS: Semi-structured interview study of 36 health researchers (both clinical and non-clinical), with data collection and thematic analysis informed by the theoretical domains framework. RESULTS: In the course of our analysis, we developed four themes that encapsulate the participants' experiences and perceptions of PPI. Participants expressed ambivalence, cynicism and enthusiasm about PPI, an activity that creates emotional labour, which is both rewarding and burdensome and requires practical and social support. It is operationalized in an academic context influenced by power and incentives. DISCUSSION AND CONCLUSIONS: Researchers' experiences and attitudes towards patient and public involvement are a key factor in the successful embedding of involvement within the wider research culture. We call for a culture change that supports the development of effective organizational approach to support involvement.


Assuntos
Atitude do Pessoal de Saúde , Participação da Comunidade/métodos , Pesquisadores/psicologia , Adulto , Participação da Comunidade/psicologia , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Participação do Paciente , Pesquisa Qualitativa , Projetos de Pesquisa , Reino Unido
6.
Sociol Health Illn ; 41(3): 585-600, 2019 03.
Artigo em Inglês | MEDLINE | ID: mdl-29493796

RESUMO

The aim of this paper is to examine the meaning of the concept of donation in health research. Drawing on a set of narrative interviews with people invited to donate biosamples for research and a range of other studies, we identify several conceptual themes that speak to the complexity of the current landscape of critical thinking about donation. These conceptual themes are: the language of 'donation'; a hierarchy of biosamples; alternative informational value; narratives as donation; coincidental donation, convenience and degree of invasiveness; and rights, consent and benefits of research participation. We call for a reconceptualisation of research donation to encompass not only the numerous types of sample readily classed as donations, but also other types of data and contributions, including narrative interviews, psychometric data, patient-reported outcome measures, record-linkage, and time and effort. We argue for the development of a pluralist sociology of research donations, and suggest that a 'sociology of research contributions' might better capture this complexity.


Assuntos
Pesquisa Biomédica/organização & administração , Sociologia Médica , Doadores de Tecidos/psicologia , Obtenção de Tecidos e Órgãos , Adulto , Idoso , Altruísmo , Características Culturais , Feminino , Humanos , Relações Interpessoais , Masculino , Pessoa de Meia-Idade , Terminologia como Assunto
7.
Qual Health Res ; 29(1): 124-134, 2019 01.
Artigo em Inglês | MEDLINE | ID: mdl-29984630

RESUMO

The experience and role of self-monitoring in self-directed weight loss attempts may be distinctly different from that within formal interventions, and has yet to be fully explored. We systematically reviewed qualitative studies to examine experiences of self-monitoring as an aid to self-directed weight loss. Thematic synthesis was used to construct descriptive and analytical themes from the available data. In all, 22 studies (681 participants) were included, in which the uses of self-monitoring ranged from an aid to increase adherence to a tool for facilitating analysis. Self-monitoring also influenced and was influenced by self-perception and emotions. Feelings of shame were linked with abandonment of efforts. Findings highlight the centrality of interpretation of self-monitored data, the implications this interpretation has on sense of self, and the impact of broader discourses. Explicitly framing self-monitoring as a positive tool with which to aid analysis may encourage helpful use of this technique.


Assuntos
Manutenção do Peso Corporal , Pesquisa Qualitativa , Autogestão/psicologia , Redução de Peso , Comportamento , Emoções , Humanos , Cooperação do Paciente , Autoimagem
8.
Health Expect ; 20(3): 519-528, 2017 06.
Artigo em Inglês | MEDLINE | ID: mdl-27338242

RESUMO

BACKGROUND: There are mounting calls for robust, critical evaluation of the impact of patient and public involvement (PPI) in health research. However, questions remain about how to assess its impact, and whether it should be assessed at all. The debate has thus far been dominated by professionals. OBJECTIVE: To explore the views of PPI contributors involved in health research regarding the impact of PPI on research, whether and how it should be assessed. DESIGN: Qualitative interview study. SETTING AND PARTICIPANTS: Thirty-eight PPI contributors involved in health research across the UK. RESULTS: Participants felt that PPI has a beneficial impact on health research. They described various impactful roles, which we conceptualize as the 'expert in lived experience', the 'creative outsider', the 'free challenger', the 'bridger', the 'motivator' and the 'passive presence'. Participants generally supported assessing the impact of PPI, while acknowledging the challenges and concerns about the appropriateness and feasibility of measurement. They expressed a range of views about what impacts should be assessed, by whom and how. Individual feedback on impact was seen as an important driver of improved impact and motivation to stay involved. CONCLUSIONS: While there appears to be widespread support for PPI impact assessment among PPI contributors, their views on what to assess and how are diverse. PPI contributors should be involved as equal partners in debates and decisions about these issues. Individual feedback on impact may increase PPI contributors' potential impact and their motivation to stay involved.


Assuntos
Participação da Comunidade/psicologia , Participação do Paciente/psicologia , Avaliação de Programas e Projetos de Saúde , Adulto , Idoso , Pesquisa Biomédica , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Reino Unido
9.
Health Expect ; 20(5): 836-844, 2017 10.
Artigo em Inglês | MEDLINE | ID: mdl-27885770

RESUMO

BACKGROUND: Policy-makers and health research funders increasingly require researchers to demonstrate that they have involved patients in the design and conduct of research. However, the extent to which patients and public have the power to get involved on an equal footing is dependent on their economic, cultural, social and symbolic capital. OBJECTIVE: To explore power relations in patient and public involvement (PPI) in research, particularly how patients may wield symbolic capital to develop a more equal relationship. METHODS: Narrative interviews with a maximum variation sample of 38 people involved as patients, carers or public in health research, analysed thematically. FINDINGS: Symbolic capital may be demonstrated in a range of ways (sometimes alongside or in the absence of other forms of capital): illness experience, technical illness knowledge and the challenging outsider. Symbolic capital is unstable and dependent on others for recognition and legitimacy. Nonetheless, participants identify a gradual shift in power relations over time. DISCUSSION AND CONCLUSIONS: Research into PPI has been conceptually and theoretically poor, limiting our understanding of its mechanisms and wider contextual elements. Our findings demonstrate the importance of reflecting on the forms of power and capital wielded by the health research community, and of acknowledging the way in which PPI is challenging the status quo. As one of the first papers to conceptualize how different forms of symbolic capital operate and their critical role in challenging the balance of power, our findings may help researchers better plan their PPI activities and reflect on their own power.


Assuntos
Participação da Comunidade/métodos , Participação da Comunidade/psicologia , Processos Grupais , Pesquisa sobre Serviços de Saúde/organização & administração , Adolescente , Adulto , Idoso , Cuidadores/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Participação do Paciente/métodos , Participação do Paciente/psicologia , Pacientes/psicologia , Percepção , Apoio Social , Adulto Jovem
10.
Health Expect ; 19(4): 805-16, 2016 08.
Artigo em Inglês | MEDLINE | ID: mdl-26072951

RESUMO

BACKGROUND: In the UK, altruism has featured explicitly as an underpinning principle for biobanking. However, conceptualizing donation as altruistic downplays the role of reciprocity and personal or family benefit. OBJECTIVE: To investigate how biosample donors talk about their donation and whether they regard samples as 'gifts'. METHODS: In this qualitative study, 21 people, both healthy volunteers and people with health conditions, who had been invited to give biosamples took part in semi-structured narrative interviews. The data were transcribed verbatim and thematically analysed. RESULTS: The term 'gift' was considered appropriate by some, but it also evoked puzzlement, especially in relation to 'waste' material (e.g. urine or tumour samples). Whilst 'giving' or 'donating' were commonly mentioned, the noun 'gift' signified something more special and deliberate. Analysis suggested biosamples could be interpreted as gifts in several different ways, including unreserved gift; reciprocal gift; collective gift; unwanted/low-value gift; and gift as an exaggeration. DISCUSSION AND CONCLUSIONS: Although people describe a network of exchange consistent with anthropological understandings of gift relationships, lay (and biomedical) understandings of the term 'gift' may differ from anthropological definitions. For donors (and researchers), value is attached to the information derived from the sample, rather than the sample itself. Consequently, when asking people for biosamples, we should avoid using the term 'gift'. Acknowledging the value of participation and the information the sample holds may mean more to potential donors.


Assuntos
Atitude Frente a Morte , Bancos de Espécimes Biológicos , Doações , Doadores Vivos/psicologia , Obtenção de Tecidos e Órgãos , Adulto , Idoso , Altruísmo , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Motivação , Pesquisa Qualitativa , Reino Unido
12.
Fam Pract ; 32(6): 659-63, 2015 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-26424724

RESUMO

BACKGROUND: Clinical practice guidelines recommend that stroke survivors' needs be assessed at regular intervals after stroke. The extent to which GPs comply with national guidance particularly for patients in care homes who have greatest clinical complexity is unknown. OBJECTIVES: This study aimed to establish the current clinical practice in the UK of needs assessment by GPs for stroke survivors after hospital discharge for acute stroke. METHODS: Cross-sectional online survey of current practice of GPs, using the national doctors.net network. RESULTS: The survey was completed by 300 GPs who had on average been working for 14 years. The structured assessment of stroke survivors' needs was not offered by 31% of GPs, with no significant difference for level of provision in community or care home settings. The outputs of reviews were added to patients' notes by 89% of GPs and used to change management by 57%. Only half the GPs reported integrating the information obtained into care plans and only a quarter of GPs had a protocol for follow-up of identified needs. Analysis of free-text comments indicated that patients in some care homes may receive more regular and structured reviews. CONCLUSIONS: This survey suggests that at least one-third of GPs provide no formal review of the needs of stroke patients and that in only a minority are identified needs addressed in a structured way. Standardization is required for what is included in reviews and how needs are being identified and met.


Assuntos
Clínicos Gerais , Fidelidade a Diretrizes , Avaliação das Necessidades , Acidente Vascular Cerebral/terapia , Atitude do Pessoal de Saúde , Estudos Transversais , Humanos , Vida Independente , Internet , Casas de Saúde , Guias de Prática Clínica como Assunto , Atenção Primária à Saúde , Inquéritos e Questionários , Sobreviventes , Reino Unido
13.
Ecancermedicalscience ; 18: 1676, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38439811

RESUMO

Childhood cancer is an urgent priority in Egypt, owing to a large number of children with cancer, the great need and demand for paediatric oncology services, limited resources/funds and inferior survival outcomes. Therefore, an overview of the status of childhood cancer care in Egypt and an evidence-based approach towards optimal utilisation of resources/funds to improve this care are needed. This paper summarises key evidence about childhood cancer care and outcomes in Egypt. We conducted a narrative literature review using a structured search strategy of the MEDLINE database through the PubMed interface. All relevant evidence was summarised under five main sub-topics: (1) burden of childhood cancer in Egypt; (2) treatment approaches; (3) health outcomes; (4) costs and cost-effectiveness of treatment; and (5) barriers and facilitators to optimal childhood cancer care. We found high estimates of disease burden of childhood cancer in Egypt. Furthermore, childhood cancer treatment in Egypt is based on either implementing intensity-regulated protocols or adopting international protocols with or without adaptations to local contexts, leading to varying standards of care among the different treating centres. Limited data about the survival outcomes, costs and cost-effectiveness of treatment exist, although high-quality data from retrospective cohort studies were published from a large paediatric oncology centre (Children's Cancer Hospital Egypt-57357). As Egypt joins the WHO Global Initiative for Childhood Cancers as a focus country, it is prepared to move towards streamlining national efforts to implement a national childhood cancer plan to advance care, improve health outcomes and optimise resource use. Through these efforts, Egypt could become a beacon of hope and a role model to other low- and middle-income countries seeking to improve their childhood cancer care.

14.
Clin Obes ; 14(2): e12631, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38320758

RESUMO

Obesity is a chronic and complex disease affecting millions of people worldwide. Currently, there is no standard definition of success for the management of obesity. We set out to complete a synthesis of clinical practice guidelines for obesity management for adult populations, aiming to provide both a quantitative descriptive and qualitative analysis of definitions of success in clinical practice guidelines. An electronic search retrieved 4477 references. Sixteen clinical practice guidelines were included after screening and full-text review. We coded definitions of success 147 times across the included guidelines. No standard or explicit definition of success was identified in the guidelines but rather success was implicitly defined. We developed three themes describing how success was defined in the clinical practice guidelines: Knowledge-based decision making; management of expectations; and the perception of control. The review reinforced that success is an inherently subjective and complex concept. Defining success is limited by existing studies that focus on weight loss and would benefit from additional research on different outcomes. Equally, the relationship between people living with obesity and their clinicians should be further explored to understand how defining success is controlled, discussed and framed in a clinical setting.


Assuntos
Obesidade , Redução de Peso , Adulto , Humanos , Obesidade/terapia
15.
Artigo em Inglês | MEDLINE | ID: mdl-38862196

RESUMO

INTRODUCTION: In June 2021, high-profile testimonials in the media about pain during intrauterine device (IUD) procedures in the UK prompted significant discussion across platforms including Twitter (subsequently renamed X). We examined a sample of Twitter postings (tweets) to gain insight into public perspectives and experiences. METHODS: We harvested tweets posted or retweeted on 21-22 June 2021 which contained the search terms coil, intrauterine system, IUD or intrauterine. We analysed the dataset thematically and selected illustrative tweets with the authors' consent for publication. RESULTS: Following deduplication and screening, we included 1431 tweets in our analysis. We identified testimonials with descriptions of varied pain experiences. Twitter users reported that clinicians had not warned them that pain could be severe or explained the options for pain relief. Some raised concerns about pain being minimised or dismissed and linked this to the management of women's pain in medicine more broadly. Twitter users described connecting to an online community with shared experiences as validating and used this as a springboard for collective action. CONCLUSIONS: While we acknowledge the limitations of our sample, this study highlights important perspectives and accounts relating to pain during IUD procedures. Our findings attest to the need for strategies to improve the patient experience for those opting for IUD as a clinical priority. Further research should explore IUD users' experiences, expectations and wishes around pain management.

16.
BMJ Ment Health ; 27(1)2024 Feb 01.
Artigo em Inglês | MEDLINE | ID: mdl-38302410

RESUMO

BACKGROUND: Patients diagnosed with psychosis often spend less time than others engaged in exercise and more time sitting down, which likely contributes to poorer physical and mental health. OBJECTIVE: The aim of this study was to develop a comprehensive framework from the perspective of patients, carers, and staff for understanding what promotes movement and physical activity. METHODS: A critical realist approach was taken to design the study. Interviews (n=23) and focus groups (n=12) were conducted with (1) outpatients aged 16 years or older diagnosed with psychosis, and under the care of a mental health team, (2) carers and (3) mental health staff working in the community. Purposive sampling was used to maximise variation in participant characteristics. Data were analysed using reflexive thematic analysis. FINDINGS: 19 patients (9 women and 10 men, mean age=45·0 (SD=12·2) years, 15 White British, 2 Black African, 1 Pakistani and 1 other ethnic group), 14 carers (11 women and 3 men, mean age=59·9 (SD=12·7) years, 13 White British and 1 Asian) and 18 staff (14 women and 4 men, mean age=38·7 (SD=12·3) years, 15 White British, 1 White other, 1 Asian Bangladeshi and 1 other Asian) participated in the study. Five factors were found to promote movement and physical activity. Patients must be able to find a purpose to moving which is meaningful to them (Factor 1: Purpose). Patients need to have an expectation of the positive consequences of movement and physical activity, which can be influenced by others' expectations (Factor 2: Predictions). A patient's current physical (eg, pain) and emotional state (eg, distress about voices) needs to be addressed to allow movement and physical activity (Factor 3: Present state). Movement and physical activity can also be encouraged by the availability of effective and tailored support, provided by engaged and supported people (Factor 4: Provision). Finally, through the identification and interruption of vicious cycles (eg, between inactivity and mood states) more positive cycles can be put in place (Factor 5: Process). CONCLUSIONS AND CLINICAL IMPLICATIONS: The 5 P (Purpose, Predictions, Present state, Provision and Process Physical Activity Framework) for understanding movement and physical activity for people diagnosed with psychosis has the potential to inform future research and guide interventions. A checklist is provided for clinicians to help foster change in activity levels.


Assuntos
Exercício Físico , Transtornos Psicóticos , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Etnicidade , Saúde Mental , Transtornos Psicóticos/diagnóstico , Idoso
17.
BMJ Open ; 13(7): e072996, 2023 07 26.
Artigo em Inglês | MEDLINE | ID: mdl-37495392

RESUMO

OBJECTIVE: To understand: if professionals, citizens and patients can locate UK healthcare professionals' statements of declarations of interests, and what citizens understand by these. DESIGN: The study sample included two groups of participants in three phases. First, healthcare professionals working in the public domain (health professional participants, HPP) were invited to participate. Their conflicts and declarations of interest were searched for in publicly available data, which the HPP checked and confirmed as the 'gold standard'. In the second phase, laypeople, other healthcare professionals and healthcare students were invited to complete three online tasks. The first task was a questionnaire about their own demographics. The second task was questions about doctors' conflicts of interest in clinical vignette scenarios. The third task was a request for each participant to locate and describe the declarations of interest of one of the named healthcare professionals identified in the first phase, randomly assigned. At the end of this task, all lay participants were asked to indicate willingness to be interviewed at a later date. In the third phase, each lay respondent who was willing to be contacted was invited to a qualitative interview to obtain their views on the conflicts and declaration of interest they found and their meaning. SETTING: Online, based in the UK. PARTICIPANTS: 13 public-facing health professionals, 379 participants (healthcare professionals, students and laypeople), 21 lay interviewees. OUTCOME MEASURES: (1) Participants' level of trust in professionals with variable conflicts of interest, as expressed in vignettes, (2) participants' ability to locate the declarations of interest of a given well-known healthcare professional and (3) laypeoples' understanding of healthcare professionals declarations and conflicts of interest. RESULTS: In the first phase, 13 health professionals (HPP) participated and agreed on a 'gold standard' of their declarations. In the second phase, 379 citizens, patients, other healthcare professionals and students participated. Not all completed all aspects of the research. 85% of participants thought that knowing about professional declarations was definitely or probably important, but 76.8% were not confident they had found all relevant information after searching. As conflicts of interest increased in the vignettes, participants trusted doctors less. Least trust was associated with doctors who had not disclosed their conflicts of interest. 297 participants agreed to search for the HPP 'gold standard' declaration of interest, and 169 reported some data. Of those reporting any findings, 61 (36%) located a relevant link to some information deemed fit for purpose, and 5 (3%) participants found all the information contained in the 'gold standard'. In the third phase, qualitative interviews with 21 participants highlighted the importance of transparency but raised serious concerns about how useful declarations were in their current format, and whether they could improve patient care. Unintended consequences, such as the burden for patients and professionals to use declarations were identified, with participants additionally expressing concerns about professional bias and a lack of insight over conflicts. Suggestions for improvements included better regulation and organisation, but also second opinions and independent advice where conflicts of interest were suspected. CONCLUSION: Declarations of interest are important and conflicts of interest concern patients and professionals, particularly in regard to trust in decision-making. If declarations, as currently made, are intended to improve transparency, they do not achieve this, due to difficulties in locating and interpreting them. Unintended consequences may arise if transparency alone is assumed to provide management of conflicts. Increased trust resulting from transparency may be misplaced, given the evidence on the hazards associated with conflicts of interest. Clarity about the purposes of transparency is required. Future policies may be more successful if focused on reducing the potential for negative impacts of conflicts of interest, rather than relying on individuals to locate declarations and interpret them. TRIAL REGISTRATION NUMBER: The protocol was pre-registered at https://osf.io/e7gtq.


Assuntos
Conflito de Interesses , Emoções , Humanos , Pessoal de Saúde , Confiança , Reino Unido
18.
JCO Glob Oncol ; 9: e2200424, 2023 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-37290021

RESUMO

PURPOSE: Childhood cancer treatment is complex, resource-intensive, and expensive, and resource-limited settings would benefit from providing cost-effective treatment approaches on the basis of evidence. Effective implementation of cost-effective evidence-based treatment requires knowledge about factors influencing its use. In this study, we determined the clinicians' perceptions of the barriers and facilitators to implementing cost-effective evidence-based treatment for children with cancer in a resource-limited pediatric oncology setting in Egypt. METHODS: We conducted a qualitative study on the basis of semistructured interviews with senior clinicians who make high-level decisions on treatment protocols and tailored decisions for the atypically complicated group of patients. Purposive sampling was used to recruit the participants. Thematic analysis was conducted semantically to develop themes of barriers and facilitators. RESULTS: Fourteen participants agreed to participate in the study: nine pediatric oncologists; three surgeons; and two radiation oncologists. We identified four main themes of barriers and facilitators: awareness and orientation; knowledge, skills, and attitudes; system, resources, and context; and clinical practice. The main barriers included absence of easily available costs/cost-effectiveness data, limited resources and inability to pay for expensive novel (cost-effective) drugs, and gap between evidence and practice. The main facilitators included adopting standard treatment protocols on the basis of clinical effectiveness, leadership support, availability of patients' clinical and cost data from local context, and existing knowledge and skills in clinical research and health economic evaluation. The interview participants also provided suggestions to promote the implementation of cost-effective evidence-based treatment in priority areas. CONCLUSION: Our study findings provide an understanding of the barriers and facilitators affecting the implementation of cost-effective evidence-based treatment for childhood cancers in Egypt. We provide practical recommendations to address the implementation gaps with implications on practice, policy, and research.


Assuntos
Neoplasias , Região de Recursos Limitados , Humanos , Criança , Egito , Análise Custo-Benefício , Neoplasias/terapia , Pesquisa Qualitativa , Resultado do Tratamento
19.
BMJ Open ; 12(11): e067268, 2022 11 18.
Artigo em Inglês | MEDLINE | ID: mdl-36400731

RESUMO

OBJECTIVES: To identify and thematically analyse how healthcare professionals (HCPs) integrate patient values and preferences ('values integration') in primary care for adults with non-communicable diseases (NCDs). DESIGN: Systematic review and meta-aggregation methods were used for extraction, synthesis and analysis of qualitative evidence. DATA SOURCES: Relevant records were sourced using keywords to search 12 databases (ASSIA, CINAHL, DARE, EMBASE, ERIC, Google Scholar, GreyLit, Ovid-MEDLINE, PsycINFO, PubMed-MEDLINE, Scopus and Web of Science). ELIGIBILITY CRITERIA: Records needed to be published between 2000 and 2020 and report qualitative methods and findings in English involving HCP participants regarding primary care for adult patients. DATA EXTRACTION AND SYNTHESIS: Relevant data including participant quotations, authors' observations, interpretations and conclusions were extracted, synthesised and analysed in a phased approach using a modified version of the Joanna Briggs Institute (JBI) Data Extraction Tool, as well as EPPI Reviewer and NVivo software. The JBI Critical Appraisal Checklist for Qualitative Research was used to assess methodological quality of included records. RESULTS: Thirty-one records involving >1032 HCP participants and 1823 HCP-patient encounters were reviewed. Findings included 143 approaches to values integration in clinical care, thematically analysed and synthesised into four themes: (1) approaches of concern; (2) approaches of competence; (3) approaches of communication and (4) approaches of congruence. Confidence in the quality of included records was deemed high. CONCLUSIONS: HCPs incorporate patient values and preferences in healthcare through a variety of approaches including showing concern for the patient as a person, demonstrating competence at managing diseases, communicating with patients as partners and tailoring, adjusting and balancing overall care. Themes in this review provide a novel framework for understanding and addressing values integration in clinical care and provide useful insights for policymakers, educators and practitioners. PROSPERO REGISTRATION NUMBER: CRD42020166002.


Assuntos
Instalações de Saúde , Pessoal de Saúde , Humanos , Adulto , Pesquisa Qualitativa , Comunicação , Atenção à Saúde
20.
BMC Prim Care ; 23(1): 184, 2022 07 26.
Artigo em Inglês | MEDLINE | ID: mdl-35883016

RESUMO

BACKGROUND: Opportunistic recruitment in primary care is challenging due to the inherent unpredictability of incident conditions, and workload and time pressures. Many clinical trials do not recruit to target, leading to equivocal answers to research questions. Learning from the experiences of patients and recruiters to trials of incident conditions has the potential to improve recruitment and retention to future trials, thereby enhancing the quality and impact of research findings. The aim of this research was to learn from the trial experiences of UTI patients and recruiters to the Cranberry for UTI (CUTI) trial, to help plan an adequately powered trial of similar design. METHODS: One-to-one semi-structured interviews were embedded within the CUTI feasibility trial, an open-label, randomised feasibility trial of cranberry extract for symptoms of acute, uncomplicated Urinary Tract Infection (UTI) in primary care. Interviews were conducted with a sample of: CUTI trial participants; non-CUTI trial UTI patients; and, recruiters to the CUTI trial. Verbatim transcripts were analysed thematically. RESULTS: Twenty-six patients with UTI and eight recruiters (nurses and GPs) to the CUTI trial were interviewed. Three themes were developed around: reasons for participating in research; barriers to opportunistic recruitment; and, UTI patients' experiences of trial procedures. Recruiters found that targeted electronic prompts directed at healthcare practitioners based in clinics where patients with incident conditions were likely to present (e.g. minor illness clinic) were more effective than generic prompts (e.g. desk prompts) at filtering patients from their usual clinical pathway to research clinics. Using a script to explain the delayed antibiotic trial group to patients was found to be helpful, and may have served to boost recruitment. For UTI patients, using an electronic diary to rate their symptoms was considered an acceptable medium, and often preferable to using a paper diary or mobile phone application. CONCLUSIONS: The use of targeted prompts directed at clinicians, a script to explain trial groups that may be deemed less desirable, and an appropriate diary format for patient-reported outcomes, may help to improve trial recruitment and retention.


Assuntos
Infecções Urinárias , Vaccinium macrocarpon , Estudos de Viabilidade , Humanos , Extratos Vegetais/uso terapêutico , Atenção Primária à Saúde , Infecções Urinárias/tratamento farmacológico
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