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1.
Health Expect ; 26(4): 1692-1702, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-37154125

RESUMO

BACKGROUND: We report on a study of a facilitated interactive group learning approach, through Collaborative Implementation Groups (CIGs), established to enhance capacity for equity-sensitive evaluation of healthcare services to inform local decision-making: (1) What was the experience of participants of the CIGs? (2) How was knowledge mobilisation achieved? (3) What are the key elements that enhance the process of coproducing equity-sensitive evaluations? METHODS: A thematic analysis of qualitative data obtained from focus group (FG) discussions and semistructured interviews exploring the experiences of participants. All FGs included representation of participants from different projects across the programme. Interviews were conducted with a member from each of the teams participating in the first cohort after their final workshop. RESULTS: We identified four themes to illustrate how the approach to delivering intensive and facilitated training supported equity-sensitive evaluations of local healthcare services: (1) Creating the setting for coproduction and knowledge mobilisation; (2) establishing a common purpose, meaning and language for reducing health inequalities; (3) making connections and brokering relationships and (4) challenging and transforming the role of evaluation. CONCLUSION: We report on the implementation of a practical example of engaged scholarship, where teams of healthcare staff were supported with resources, interactive training and methodological advice to evaluate their own services, enabling organisations to assemble timely practical and relevant evidence that could feed directly into local decision-making. By encouraging mixed teams of practitioners, commissioners, patients, the public and researchers to work together to coproduce their evaluations, the programme also aimed to systematise health equity into service change. The findings of our study illustrate that the approach to delivering training gave participants the tools and confidence to address their organisation's stated aims of reducing health inequalities, coproduce evaluations of their local services and mobilise knowledge from a range of stakeholders. PATIENT OR PUBLIC CONTRIBUTION: The research question was developed collaboratively with researchers, partner organisations and public advisers (PAs). PAs were involved in meetings to agree on the focus of this research and to plan the analysis. N. T. is a PA and coauthor, contributing to the interpretation of findings and drafting of the paper.


Assuntos
Tomada de Decisão Clínica , Atenção à Saúde , Processos Grupais , Aprendizagem , Humanos
2.
BMC Health Serv Res ; 23(1): 562, 2023 May 31.
Artigo em Inglês | MEDLINE | ID: mdl-37259121

RESUMO

INTRODUCTION: Social prescribing has become an important feature of the UK primary care offer. However, there remains limited evidence on how best to implement and deliver social prescribing programmes to maximise effectiveness and long-term sustainability. AIM: To explore social prescribing practices and experience of implementing social prescribing programmes across National Institute for Health and Social Care Research (NIHR) Collaborative Leadership for Applied Health and Care Research (CLAHRC) North West Coast (NWC) and NIHR Applied Research Collaboration (ARC) NWC region to identify key learning points that can be applied to other settings. METHOD: We held a learning exchange workshop attended by practitioners and Public Advisors who had been involved in implementing and evaluating eight different social prescribing programmes with the support of NIHR CLAHRC NWC. We followed this with an online survey of social prescribing practice and priorities within the NIHR ARC NWC area. We used the findings from the workshop and survey to develop an initial model of the elements needed to successfully implement and sustain a working social prescribing programme. FINDINGS: We identified three core essential elements for a successful social prescribing programme: a personalised approach; meaningful service-user and community involvement; and whole systems working. These core elements need to be supported with adequate resources in the form of continuity of funding and adequate community resources to refer people to, capacity building and appropriate evaluation. CONCLUSION: We were able to use a learning exchange workshop to both facilitate learning between practitioners and begin the process of identifying the ingredients needed for a successful social prescribing programme, which may be built on with further research.


Assuntos
Seguridade Social , Serviço Social , Humanos , Apoio Social , Aprendizagem , Liderança
3.
BMC Public Health ; 23(1): 653, 2023 04 05.
Artigo em Inglês | MEDLINE | ID: mdl-37020218

RESUMO

BACKGROUND: Social distancing restrictions to manage the COVID-19 pandemic were put in place from March 2020 in the United Kingdom (UK), with those classed as "highly clinically vulnerable" advised to shield entirely and remain at home. However, personal risk perception has been shown to comprise of various elements beyond those outlined in the national pandemic guidance. It is unclear whether those deemed COVID-19 vulnerable identified as high-risk to COVID-19 and thus complied with the relevant advice. The aim of this research is to explore the perception of risk in catching and spreading COVID-19, amongst individuals from individual households, and vulnerable groups in a region of the UK. METHODS: Two individual, semi-structured interviews were conducted, four-weeks apart, with adults living in households in the Liverpool City Region. At the follow-up interview, participants were given the option of using photo-elicitation to guide the discussion. Reflexive thematic analysis was employed to conceptualise themes. The qualitative analysis was underpinned with symbolic interactionism. RESULTS: Twenty-seven participants (13:14 males:females, and 20 with a vulnerable risk factor to COVID-19) completed a baseline interview, and 15 of these completed a follow-up interview four-weeks later. Following thematic analysis, two overarching themes were conceptualised, with subthemes discussed: theme 1) Confusion and trust in the risk prevention guidance; and theme 2) Navigating risk: compliance and non-compliance with public health guidance. CONCLUSION: Participants developed their own understanding of COVID-19 risk perception through personal experience and comparison with others around them, irrespective of vulnerability status. COVID-19 guidance was not complied with as intended by the government, and at times even rejected due to lack of trust. The format in which future pandemic guidance is conveyed must be carefully considered, and take into account individuals' experiences that may lead to non-compliance. The findings from our study can inform future public health policy and interventions for COVID-19 and future pandemics.


Assuntos
COVID-19 , Pandemias , Adulto , Feminino , Masculino , Humanos , Inglaterra , Reino Unido , Percepção
4.
PLoS One ; 17(7): e0266153, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35830445

RESUMO

BACKGROUND AND AIM: Despite the significant mental health challenges the COVID-19 pandemic and its associated government measures have presented, research has shown that the majority of people have adapted and coped well. The aim of this study was i) to determine the proportion of people with mental stability and volatility during the pandemic in a North West England city region sample and ii) to establish group differences in psychosocial variables. Mental stability and volatility refer to the extent to which individuals reported change in levels of common mental health symptoms over the course of 12 weeks. No change in mental health over the 12 weeks reflected mental stability whilst change in mental health reflected mental volatility. METHOD: A two-wave-online survey (N = 163) was used to explore the psychological and social impact of the pandemic on relatively disadvantaged neighbourhoods within the region. The data collected represents 12 weeks of individual pandemic experience between mid-June and mid-December 2020. A three-level composite common mental health change variable was created combining self-reported anxiety and depression to group stable, volatile, and very volatile individuals in terms of the changeability of their mental health. Kruskal-Wallis with post-hoc tests were used to determine how people with mental stability and volatility differed on factors categorised within an ecological framework of resilience (individual, community, societal, and COVID-19 specific). RESULTS: Individuals categorised as 'stable' in terms of mental health symptoms (63.6%) had better mental and physical health; were more tolerant of uncertainty; and reported higher levels of resilience and wellbeing compared to 'very volatile' people (19.8%). These individuals also reported feeling less socially isolated, experienced a greater sense of belonging to their community which was more likely to fulfil their needs, and were more likely to have access to green space nearby for their recommended daily exercise. 'Stable' individuals did not report worrying any more during the pandemic than usual and tolerated uncertainty better compared to those in the 'volatile' group. IMPLICATIONS: The majority of participants in this sample were mentally stable and coping well with the challenges presented by the pandemic. The resilience of these individuals was related to key place-based factors such as a strong sense of community and useable local assets. The data showcase the role of place-based social determinants in supporting resilience and thereby highlight key preventative measures for public mental health during times of international crisis.


Assuntos
COVID-19 , Ansiedade/epidemiologia , COVID-19/epidemiologia , Humanos , Saúde Mental , Pandemias , Inquéritos e Questionários
5.
BMC Health Serv Res ; 22(1): 383, 2022 Mar 23.
Artigo em Inglês | MEDLINE | ID: mdl-35321699

RESUMO

BACKGROUND: The present evaluation explored young people's, parents/carers, and healthcare professionals' perceptions of the Youth Information, Advice and Counselling (YIAC) model operated by a voluntary sector organisation in North West England. With an aim to understand the key components that contribute to enhancing the success of the YIAC model. METHOD: Semi-structured interviews and focus groups with young people, parents/carers, and healthcare professionals were conducted. Data were analysed using thematic analysis. RESULTS: Five main themes were identified from the data: 1) Accessibility and flexibility; 2) Non-clinical model and environment; 3) Staff; 4) Partnership working; and 5) Promotion of positive mental health and wellbeing. CONCLUSION: Findings highlight the importance of non-clinical, community-based, 'one-stop-shop' hubs for young people in disadvantaged areas. The key components highlighted as facilitating access and engagement include: opportunity to self-refer, choice of location, timely provision of support, non-clinical environment, age appropriate services, a non-hierarchical workforce, inclusive support for family and carers, a focus on wider, often social, issues, and collaboration with partner organisations. These findings suggest that early support hubs for young people's mental health should have consistent, long-term funding and should exist in every local area.


Assuntos
Cuidadores , Pais , Adolescente , Cuidadores/psicologia , Aconselhamento , Humanos , Organizações , Pais/psicologia , Populações Vulneráveis
6.
BMC Public Health ; 21(1): 812, 2021 04 28.
Artigo em Inglês | MEDLINE | ID: mdl-33910534

RESUMO

INTRODUCTION: People from Minority Ethnic backgrounds living in the UK are at greater risk of not only contracting COVID-19, but also experiencing serious consequences of the virus. These emerging health inequalities mirror those already evident in UK society. AIM: The aim of this study was to understand how COVID-19 and the associated imposed restrictions affected the lives of people from the Muslim community living in the North West of England. METHOD: Twenty-five in-depth qualitative interviews and four focus groups (n = 22) explored individual experiences of COVID-19 and imposed restrictions. Data were analysed thematically. FINDINGS: The virus and associated imposed restrictions had negative impacts on the psychological wellbeing of participants, their families and the wider community. Worry and low mood were particular features of participant's pandemic stories. Main concerns were those of contracting and transmitting the virus to others and employment-related difficulties. Low mood was particularly linked to the impact of restrictions on fundamental interactions embedded within cultural and religious practices. These practices are central to feelings of belonging and connectedness within the Muslim community. Religious beliefs were important in helping to mitigate psychological distress for some participants. CONCLUSION: Psychological distress was associated with COVID-19 virus and impact of COVID-19 restrictions on livelihoods and fundamental human interactions. Better provision of culturally appropriate information, improving local channels of communication and practical support are important during times of pandemic when usual support systems may be disrupted.


Assuntos
COVID-19 , Islamismo , Inglaterra , Humanos , Distanciamento Físico , SARS-CoV-2
7.
BMC Public Health ; 21(1): 449, 2021 03 05.
Artigo em Inglês | MEDLINE | ID: mdl-33673833

RESUMO

INTRODUCTION: The evidence is now unequivocal that people from Black and Minority Ethnic Backgrounds (BAME) living in the UK are disproportionately affected by covid-19. There is growing evidence that the reasons for this difference are multi-factorial and need further exploration. AIM: The aim of this study was to understand better, perceptions of risk and responses to covid-19 of members of the Muslim community living in the North West of England, and to understand the facilitators and barriers to adherence to restrictions and guidance measures. METHOD: A total of 47 participants took part in 25 in-depth qualitative interviews and four focus groups (n=22) that explored perceptions of risk and responses to risk from covid-19. Data were analysed thematically. FINDINGS: Participants were aware of the mechanism of transmission of covid-19 and took steps to mitigate risk of transmission including, observing a range of hygiene practices and following social distancing guidance. Increased risk of covid-19 for BAME populations was explained largely in terms of exposure to the virus due to the types of employment people from BAME populations are employed in. Limitations both within the working environment and more generally in public spaces, was identified as problematic for effective social distancing. The closure of mosques sent out a strong message about the seriousness of the virus and religious teachings reinforced hygiene and social distancing guidelines. CONCLUSION: Across society there are people that adhere to restrictions and guidelines and those that do not. Improving local information provision and communication pathways during times of the pandemic, could aid understanding of risk and promote adherence to social distancing restrictions.


Assuntos
População Negra/psicologia , COVID-19/psicologia , Controle de Doenças Transmissíveis/estatística & dados numéricos , Etnicidade/psicologia , Fidelidade a Diretrizes , Islamismo/psicologia , Grupos Minoritários/psicologia , Pandemias/prevenção & controle , Adulto , Idoso , Idoso de 80 Anos ou mais , População Negra/estatística & dados numéricos , COVID-19/epidemiologia , Etnicidade/estatística & dados numéricos , Feminino , Grupos Focais , Comportamentos Relacionados com a Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Grupos Minoritários/estatística & dados numéricos , Pesquisa Qualitativa , Comportamento de Redução do Risco , SARS-CoV-2 , Reino Unido/epidemiologia
8.
Epilepsy Behav ; 95: 181-191, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-31071641

RESUMO

The widening range of treatment options for epilepsy, and their potential outcomes, mean decisions about treatment for people with epilepsy (PWE) are often complex. While antiepileptic drugs (AEDs) represent the mainstay of treatment, other potential nondrug interventions are gaining in importance. These treatments all have the potential for harming those using them, as well as bringing benefits. This study examined the views and experiences of PWE about a range of treatment options. We used both qualitative and quantitative approaches - a series of depth-narrative interviews, followed by a large-scale survey. Treatment options and healthcare priorities deemed important by at least 10% of interview participants were then addressed as a series of statements in the follow-on survey questionnaire. Quantitative responses supported healthcare priorities identified through the qualitative interviews. The key goal of treatment among study participants was to be able to live 'a normal life'. Important physical, psychological, and life benefits of treatment were identified - most being the direct consequence of improved seizure control. One psychological benefit, reduced worry, was also identified as an important treatment goal. All participants viewed AEDs as appropriate first-line treatment; and since adverse effects of AEDs had implications for individual levels of daily function and wellbeing, their appropriate management was considered important. In contrast, surgery was almost always regarded as the treatment of last resort. Despite lack of research evidence supporting their use, participants were interested in complementary therapies as adjunctive treatment and a means of coping with having epilepsy, with yoga and meditation of particular interest. An important finding was the desire for targeted services to help with memory problems, as was the call to increase availability of psychological/counseling services. Our findings emphasize the importance of providing treatment responsive to the life context of individual patients. They highlight not only the level of demand for specific treatment options, but also the need for high-quality evidence to support future investment in their provision.


Assuntos
Anticonvulsivantes , Epilepsia/terapia , Aceitação pelo Paciente de Cuidados de Saúde , Preferência do Paciente , Psicoterapia , Adulto , Epilepsia/tratamento farmacológico , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Reino Unido , Adulto Jovem
9.
Clin Pharmacol Ther ; 105(3): 672-683, 2019 03.
Artigo em Inglês | MEDLINE | ID: mdl-30204252

RESUMO

Regulatory decisions may be enhanced by incorporating patient preferences for drug benefit and harms. This study demonstrates a method of weighting clinical evidence by patients' benefit-risk preferences. Preference weights, derived from discrete choice experiments, were applied to clinical trial data to estimate the expected utility of alternative drugs. In a case study, the rank ordering of antiepileptic drugs (AEDs), as indicated from clinical studies, was compared with ordering based on weighting clinical evidence by patients' preferences. A statistically significant change in rank ordering of AEDs was observed for women of childbearing potential who were prescribed monotherapy for generalized or unclassified epilepsy. Rank ordering inferred from trial data, valproate > topiramate > lamotrigine, was reversed. Modeling the expected utility of drugs might address the need to use more systematic, methodologically sound approaches to collect patient input that can further inform regulatory decision making.


Assuntos
Anticonvulsivantes/administração & dosagem , Desenvolvimento de Medicamentos/métodos , Grupos Focais/métodos , Assistência Centrada no Paciente/métodos , Medição de Risco/métodos , Adolescente , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Convulsões/tratamento farmacológico , Adulto Jovem
10.
Health Place ; 51: 1-10, 2018 05.
Artigo em Inglês | MEDLINE | ID: mdl-29482064

RESUMO

We conducted a systematic review of observational evidence on the health impacts of women's low control/autonomy in the living environment in societies with profound gender discrimination and gender bias. Thirty observational studies of varying methodological quality were included. Overall, the evidence suggests that women's lower control or autonomy (for example lack of freedom of movement outside the home, lack of authority to access healthcare for sick children) was associated with poorer mental and physical health for women and higher morbidity and mortality for their children, after adjusting for their socioeconomic circumstances. Further studies are needed to disentangle and understand the pathways between low control and health outcomes in contexts of profound gender discrimination. This systematic review has highlighted the general low quality of the evidence base on this research question. It identifies the pressing need for high quality, longitudinal studies in the future.


Assuntos
Disparidades nos Níveis de Saúde , Autonomia Pessoal , Sexismo , Saúde da Mulher , Feminino , Humanos , Morbidade
11.
Health Technol Assess ; 21(35): 1-164, 2017 06.
Artigo em Inglês | MEDLINE | ID: mdl-28648148

RESUMO

BACKGROUND: Depression and debt are common in the UK. Debt Counselling for Depression in Primary Care: an adaptive randomised controlled pilot trial (DeCoDer) aimed to assess the clinical effectiveness and cost-effectiveness of the addition of a primary care debt counselling advice service to usual care for patients with depression and debt. However, the study was terminated early during the internal pilot trial phase because of recruitment delays. This report describes the rationale, methods and findings of the pilot study, and implications for future research. OBJECTIVES: The overarching aim of the internal pilot was to identify and resolve problems, thereby assessing the feasibility of the main trial. The specific objectives were to confirm methods for practice recruitment and the ability to recruit patients via the proposed approaches; to determine the acceptability of the study interventions and outcome measures; to assess contamination; to confirm the randomisation method for main trial and the level of participant attrition; and to check the robustness of data collection systems. DESIGN: An adaptive, parallel, two-group multicentre randomised controlled pilot trial with a nested mixed-methods process and economic evaluation. Both individual- and cluster (general practice)-level were was used in the pilot phase to assign participants to intervention or control groups. SETTING: General practices in England and Wales. PARTICIPANTS: Individuals were included who were aged ≥ 18 years, scored ≥ 14 on the Beck Depression Inventory II and self-identified as having debt worries. The main exclusion criteria were being actively suicidal or psychotic and/or severely depressed and unresponsive to treatment; having a severe addiction to alcohol/illicit drugs; being unable/unwilling to give written informed consent; currently participating in other research including follow-up phases; having received Citizens Advice Bureau (CAB) debt advice in the past year; and not wanting debt advice via a general practice. INTERVENTIONS: The participants in the intervention group were given debt advice provided by the CAB and shared biopsychosocial assessment, in addition to treatment as usual (TAU) and two debt advice leaflets. The participants in the control group were given advice leaflets provided by the general practitioner and TAU only. MAIN OUTCOME MEASURES: (1) Outcomes of the pilot trial - the proportion of eligible patients who consented, the number of participants recruited compared with target, assessment of contamination, and assessment of patient satisfaction with intervention and outcome measures. (2) Participant outcomes - primary - Beck Depression Inventory II; secondary - psychological well-being, health and social care utilisation, service satisfaction, substance misuse, record of priority/non-priority debts, life events and difficulties, and explanatory measures. Outcomes were assessed at baseline (pre-randomisation) and at 4 months post randomisation. Other data sources - qualitative interviews were conducted with participants, clinicians and CAB advisors. RESULTS: Of the 238 expressions of interest screened, 61 participants (26%) were recruited and randomised (32 in the intervention group and 29 in the control group). All participants provided baseline outcomes and 52 provided the primary outcome at 4 months' follow-up (14.7% dropout). Seventeen participants allocated to the intervention saw a CAB advisor. Descriptive statistics are reported for participants with complete outcomes at baseline and 4 months' follow-up. Our qualitative findings suggest that the relationship between debt and depression is complex, and the impact of each on the other is compounded by other psychological, social and contextual influences. CONCLUSIONS: As a result of low recruitment, this trial was terminated at the internal pilot phase and was too small for inferential statistical analysis. We recommend ways to reduce this risk when conducting complex trials among vulnerable populations recruited in community settings. These cover trial design, the design and delivery of interventions, recruitment strategies and support for sites. TRIAL REGISTRATION: Current Controlled Trials ISRCTN79705874. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 21, No. 35. See the NIHR Journals Library website for further project information. Mark Gabbay and Adele Ring are part-funded by NIHR Collaborations for Leadership in Applied Health Research and Care (CLAHRC) North West Coast and Richard Byng and Rod S Taylor, Vashti Berry and Elizabeth Shaw part-funded by NIHR CLAHRC South West Peninsula.


Assuntos
Aconselhamento/economia , Aconselhamento/métodos , Transtorno Depressivo/psicologia , Transtorno Depressivo/terapia , Atenção Primária à Saúde/organização & administração , Adulto , Idoso , Análise Custo-Benefício , Feminino , Serviços de Saúde/estatística & dados numéricos , Humanos , Masculino , Saúde Mental , Pessoa de Meia-Idade , Aceitação pelo Paciente de Cuidados de Saúde , Satisfação do Paciente , Seleção de Pacientes , Projetos Piloto , Atenção Primária à Saúde/economia , Qualidade de Vida , Serviço Social/estatística & dados numéricos , Medicina Estatal/economia , Transtornos Relacionados ao Uso de Substâncias/epidemiologia , Reino Unido , Adulto Jovem
12.
Epilepsy Behav ; 56: 153-64, 2016 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-26895477

RESUMO

A significant body of research highlights negative impacts of epilepsy for individual quality of life (QOL). Poor seizure control is frequently associated with reporting of poor QOL and good seizure control with good QOL; however, this is not a universal finding. Evidence suggests that some people enjoy good QOL despite ongoing seizures while others report poor QOL despite good seizure control. Understanding the factors that influence QOL for people with epilepsy and the processes via which such factors exert their influence is central to the development of interventions to support people with epilepsy to experience the best possible QOL. We present findings of a qualitative investigation exploring influences and processes on QOL for people with epilepsy. We describe the clinical, psychological, and social factors contributing to QOL. In particular, we focus on the value of the concept of resilience for understanding quality of life in epilepsy. Based on our analysis, we propose a model of resilience wherein four key component sets of factors interact to determine QOL. This model reflects the fluid nature of resilience that, we suggest, is subject to change based on shifts within the individual components and the interactions between them. The model offers a representation of the complex influences that act and interact to either mitigate or further compound the negative impacts of epilepsy on individual QOL.


Assuntos
Compreensão , Epilepsia/diagnóstico , Epilepsia/psicologia , Qualidade de Vida/psicologia , Resiliência Psicológica , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos , Convulsões/diagnóstico , Convulsões/psicologia
13.
Br J Clin Pharmacol ; 80(5): 1149-59, 2015 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-26138622

RESUMO

AIM: Pharmacogenetic studies have identified the presence of the HLA-A*31:01 allele as a predictor of cutaneous adverse drugs reactions (ADRs) to carbamazepine. This study aimed to ascertain the preferences of patients and clinicians to inform carbamazepine pharmacogenetic testing services. METHODS: Attributes of importance to people with epilepsy and neurologists were identified through interviews and from published sources. Discrete choice experiments (DCEs) were conducted in 82 people with epilepsy and 83 neurologists. Random-effects logit regression models were used to determine the importance of the attributes and direction of effect. RESULTS: In the patient DCE, all attributes (seizure remission, reduction in seizure frequency, memory problems, skin rash and rare, severe ADRs) were significant. The estimated utility of testing was greater, at 0.52 (95% CI 0.19, 1.00) than not testing at 0.33 (95% CI -0.07, 0.81). In the physician DCE, cost, inclusion in the British National Formulary, coverage, negative predictive value (NPV) and positive predictive value (PPV) were significant. Marginal rates of substitution indicated that neurologists were willing to pay £5.87 for a 1 percentage point increase in NPV and £3.99 for a 1 percentage point increase in PPV. CONCLUSION: The inclusion of both patients' and clinicians' perspectives represents an important contribution to the understanding of preferences towards pharmacogenetic testing prior to initiating carbamazepine. Both groups identified different attributes but had generally consistent preferences. Patients' acceptance of a decrease in treatment benefit for a reduced chance of severe ADRs adds support for the implementation of HLA-A*31:01 testing in routine practice.


Assuntos
Atitude do Pessoal de Saúde , Carbamazepina/uso terapêutico , Epilepsia/tratamento farmacológico , Epilepsia/genética , Testes Genéticos , Preferência do Paciente , Médicos/psicologia , Adolescente , Adulto , Idoso , Epilepsia/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Farmacogenética , Adulto Jovem
14.
Sociol Health Illn ; 37(1): 30-51, 2015 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-25601063

RESUMO

In the UK National Health Service, primary care organisation (PCO) managers have traditionally relied on the soft leadership of general practitioners based on professional self-regulation rather than direct managerial control. The 2004 general medical services contract (nGMS) represented a significant break from this arrangement by introducing new performance management mechanisms for PCO managers to measure and improve general practice work. This article examines the impact of nGMS on the governance of UK general practice by PCO managers through a qualitative analysis of data from an empirical study in four UK PCOs and eight general practices, drawing on Hood's four-part governance framework. Two hybrids emerged: (i) PCO managers emphasised a hybrid of oversight, competition (comptrol) and peer-based mutuality by granting increased support, guidance and autonomy to compliant practices; and (ii) practices emphasised a broad acceptance of increased PCO oversight of clinical work that incorporated a restratified elite of general practice clinical peers at both PCO and practice levels. Given the increased international focus on the quality, safety and efficiency in primary care, a key issue for PCOs and practices will be to achieve an effective, contextually appropriate balance between the counterposing governance mechanisms of peer-led mutuality and externally led comptrol.


Assuntos
Pessoal Administrativo/organização & administração , Atenção à Saúde/organização & administração , Medicina Geral/organização & administração , Atenção Primária à Saúde/organização & administração , Medicina Estatal/organização & administração , Política de Saúde , Pesquisa sobre Serviços de Saúde , Humanos , Melhoria de Qualidade , Reino Unido
15.
Epilepsy Behav ; 33: 59-68, 2014 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-24632355

RESUMO

Previous research identifies loss as a key concept for our understanding of the impact of chronic illness. In this in-depth qualitative study, we explored the utility of the concept of loss and loss replacement as a means of gaining a fuller understanding of the implications of a diagnosis of epilepsy for overall quality of life (QOL). Potential participants were identified from the database of a large UK-based randomized controlled trial of antiepileptic drug treatment for new-onset epilepsy and selected using purposive sampling methods. In-depth interviews were conducted with 67 people; interview material was analyzed thematically. Our findings confirm 'loss' as a key concept in understanding epilepsy impact. Participants cited profound physical and social losses, and the links between these and psychological loss were clearly articulated. Informants described two main processes via which the linked losses they experienced occurred: personal withdrawal processes and externally enforced processes. Seizure control was integral to restoring psychological well-being and a sense of normality but was only one of a number of influences moderating the degree of loss experienced following seizure onset. Our work emphasizes that people with epilepsy (PWE) require active support for their continued engagement or reengagement in roles and activities identified as central to their psychological well-being and overall QOL. Achieving this requires a multiagency approach to drive forward key strategies for reduction of the negative impacts of epilepsy and to engender a sense of normality in the context of a condition often experienced as placing the individual outside the socially determined parameters of the 'normal'.


Assuntos
Adaptação Psicológica , Epilepsia/psicologia , Qualidade de Vida/psicologia , Adulto , Idoso , Anticonvulsivantes/uso terapêutico , Doença Crônica , Epilepsia/diagnóstico , Epilepsia/tratamento farmacológico , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Perfil de Impacto da Doença , Inquéritos e Questionários , Adulto Jovem
16.
Epilepsia ; 52(3): 610-8, 2011 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-21070216

RESUMO

PURPOSE: Epilepsy has been associated with reduced quality of life (QOL), but QOL outcomes are heterogeneous. Some people are able to maintain a good QOL despite poorly controlled epilepsy and others report poor QOL despite well-controlled epilepsy. Maintaining a good QOL in the face of adversity is embodied by the concept of resilience. We explored the factors associated with having a resilient outcome in people with epilepsy (PWE). Our definition of adversity included socioeconomic disadvantage as well as continuing seizures. METHODS: We analyzed data collected as part of the Standard and New Antiepileptic Drugs (SANAD) trial. At the end of 4-year follow-up, patients were classified into four groups on the basis of seizure control (good/poor) and socioeconomic status (advantaged/disadvantaged). We identified individuals with resilient and vulnerable outcomes and the factors associated with having them. KEY FINDINGS: Seizure control was more important in determining QOL than material advantage, but socioeconomic status appeared to act as an additional protective or risk factor for QOL. Significant predictors of a resilient outcome were absence of depression and fewer adverse treatment effects at 4 years and good QOL at baseline. Significant predictors of a vulnerable outcome were fair/poor health perception, presence of depression, reduced sense of mastery, and more adverse treatment effects at follow-up. SIGNIFICANCE: Reducing the adverse effects of treatment, along with psychosocial interventions to increase self-mastery, reduce health concerns, treat depression, and promote positive adjustment to a diagnosis will likely improve the QOL of PWE despite less favorable clinical and socioeconomic circumstances.


Assuntos
Anticonvulsivantes/uso terapêutico , Epilepsia/tratamento farmacológico , Epilepsia/psicologia , Qualidade de Vida/psicologia , Resiliência Psicológica , Adolescente , Adulto , Anticonvulsivantes/economia , Análise Custo-Benefício , Custos de Medicamentos , Epilepsia/economia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Prognóstico , Fatores de Risco , Perfil de Impacto da Doença , Fatores Socioeconômicos , Inquéritos e Questionários , Adulto Jovem
17.
J Affect Disord ; 121(3): 239-46, 2010 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-19589602

RESUMO

BACKGROUND: The role of current social risk factors in moderating the impact of antidepressant medication has not previously been explored. METHOD: In a RCT of SSRIs of general practice patients with mild to moderate depression (HDRS 12-19) two social indices of aversive experience were developed on the basis of prior research. First, the Life Events and Difficulties Schedule (LEDS) was used twice to document: i) recent stressful experience prior to baseline, and ii) after baseline and before follow up at 12 weeks both stressful and positive experiences, taking account of 'fresh start' and 'difficulty-reduction' events. Second, an index of unemployment-entrapment at baseline was developed for the current project. The HDRS was used to measure outcome as a continuous score and as a cut-point representing improvement below score 8. RESULTS: Each social index (LEDS and Unemployment-entrapment) was associated with a lower chance of remission at 12 weeks and each was required to model remission along with treatment arm. However there was no interaction: the degree of increased remission for those randomised to SSRIs plus supportive care compared to that for those with supportive care alone was the same regardless of social context. LIMITATIONS: Dating of remission was not as thorough as in previous work with the LEDS. Detailed examination of positive experiences suggested the large majority were not the result of remitting symptoms, but it is impossible to rule this out altogether. CONCLUSIONS: Remission rates among patients in aversive social contexts are consistently much lower irrespective of treatment. There is thus a need to evaluate the efficacy of alternative more socially focussed interventions for depressive conditions likely to take a chronic course in general practice.


Assuntos
Antidepressivos de Segunda Geração/uso terapêutico , Acontecimentos que Mudam a Vida , Inibidores Seletivos de Recaptação de Serotonina/uso terapêutico , Fatores Socioeconômicos , Adulto , Idoso , Idoso de 80 Anos ou mais , Inglaterra , Medicina de Família e Comunidade , Feminino , Seguimentos , Humanos , Relações Interpessoais , Masculino , Pessoa de Meia-Idade , Inventário de Personalidade/estatística & dados numéricos , Psicometria , Fatores de Risco , Resultado do Tratamento , Desemprego/psicologia , Adulto Jovem
18.
J Gen Intern Med ; 24(4): 450-6, 2009 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-19165548

RESUMO

BACKGROUND: Patients with medically unexplained physical symptoms (MUS) are often thought to deny psychological needs when they consult general practitioners (GPs) and to request somatic intervention instead. We tested predictions from the contrasting theory that they are transparent in communicating their psychological and other needs. OBJECTIVE: To test predictions that what patients tell GPs when they consult about MUS is related transparently to their desire for (1) emotional support, (2) symptom explanation and (3) somatic intervention. DESIGN: Prospective naturalistic study. Before consultation, patients indicated what they wanted from it using a self-report questionnaire measuring patients' desire for: emotional support, explanation and reassurance, and physical investigation and treatment. Their speech during consultation was audio-recorded, transcribed and coded utterance-by-utterance. Multilevel regression analysis tested relationships between what patients sought and what they said. PARTICIPANTS: Patients (N = 326) consulting 33 GPs about symptoms that the GPs designated as MUS. RESULTS: Patients who wanted emotional support spoke more about psychosocial problems, including psychosocial causes of symptoms and their need for psychosocial help. Patients who wanted explanation and reassurance suggested more physical explanations, including diseases, but did not overtly request explanation. Patients' wish for somatic intervention was associated only with their talk about details of such interventions and not with their requests for them. CONCLUSIONS: In general, patients with medically unexplained symptoms provide many cues to their desire for emotional support. They are more indirect or guarded in communicating their desire for explanation and somatic intervention.


Assuntos
Comunicação , Pacientes/psicologia , Relações Médico-Paciente , Atenção Primária à Saúde/métodos , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos
19.
Gen Hosp Psychiatry ; 30(2): 104-11, 2008.
Artigo em Inglês | MEDLINE | ID: mdl-18291292

RESUMO

OBJECTIVE: We tested the theory that general practitioners (GPs) offer somatic intervention to patients with medically unexplained symptoms (MUS) as a defensive response to patients' dependence. We predicted that GPs most likely to respond somatically after patients indicated symptomatic or psychosocial needs had attachment style characterised by negative models of self and others. METHOD: Twenty-five GPs identified 308 patients presenting MUS and indicated their own models of self and others. Consultations were audio recorded and coded speech-turn-by-speech-turn. We modeled the probability of GPs proposing somatic intervention on any turn as a function of their models of self and other and the number of prior turns containing symptomatic or psychosocial presentations. RESULTS: Prior psychosocial presentations decreased the likelihood of GPs offering somatic intervention. The decrease was greatest in GPs with most positive models of self and, contrary to prediction, least positive models of others. The positive relationship between prior somatic presentations and the likelihood that GPs offered somatic intervention was unrelated to either model. CONCLUSION: Findings are incompatible with our theory that GPs propose somatic interventions defensively. Instead, GPs may provide somatic intervention because they value patients (positive model of others) but devalue their own psychological skills (negative model of self).


Assuntos
Relações Médico-Paciente , Médicos de Família , Padrões de Prática Médica , Transtornos Somatoformes/terapia , Adulto , Inglaterra , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários
20.
Gen Hosp Psychiatry ; 29(5): 454-60, 2007.
Artigo em Inglês | MEDLINE | ID: mdl-17888815

RESUMO

OBJECTIVE: Consultations about medically unexplained symptoms (MUSs) can resemble contests over the legitimacy of patients' demands. To understand doctors' motivations for speech appearing to be critical of patients with MUSs, we tested predictions that its frequency would be related to patients' demands for emotional support and doctors' patient-centered attitudes as well as adult attachment style. METHODS: Twenty-four general practitioners identified 249 consecutive patients presenting with MUSs and indicated their own patient-centered attitudes as well as adult attachment style (positive models of self and others). Before consultation, patients self-reported their desire for emotional support. Consultations were audio recorded and coded utterance by utterance. The number of utterances coded as criticism was the response variable in the multilevel regression analyses. RESULTS: Frequency of criticism was positively related to patients' demands for emotional support, to doctors' belief in sharing responsibility with patients and to doctors' positive model of themselves. It was inversely associated with doctors' belief that patients' feelings were legitimate business for consultation and was unrelated to their model of others. CONCLUSIONS: From the perspective of doctors, speech that appears to be critical probably reflects therapeutic intent and might therefore be better described as "confrontation." Understanding doctors' motivations for what they say to patients with MUSs will allow for more effective interventions to improve the quality of consultations.


Assuntos
Relações Médico-Paciente , Médicos de Família/psicologia , Transtornos Psicofisiológicos/psicologia , Apoio Social , Inglaterra , Feminino , Humanos , Masculino , Encaminhamento e Consulta , Medicina Estatal , Estresse Psicológico , Inquéritos e Questionários , Gravação em Fita
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