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1.
Br J Gen Pract ; 74(suppl 1)2024 Jun 20.
Artigo em Inglês | MEDLINE | ID: mdl-38902039

RESUMO

BACKGROUND: Perinatal anxiety (PNA) occurs during pregnancy and up to 12 months post-partum. PNA affects more than 21% of women and can impact adversely on mothers, children and their families. National Institute for Health and Care Excellence (NICE) guidance identified evidence gaps around non-pharmacological interventions for PNA. AIM: This qualitative study aimed to understand the perspectives of a variety of Perinatal Mental Health (PMH) stakeholders about non-pharmacological interventions for PNA. METHOD: Ethics approval. Semi-structured interviews with women with lived experience of PNA, healthcare professionals (HCPs), voluntary community and social enterprise (VCSE) stakeholders and commissioners. Topic guide modified in response to emerging themes. Interviews digitally recorded with consent, transcribed, and analysed thematically. A patient advisory group was involved throughout the study. RESULTS: There were 25 interviews conducted. Women with PNA expressed a wish to choose from a range of non-pharmacological interventions, which are often delivered by VSCE organisations or not commissioned within the NHS. HCPs described a hierarchy of interventions that can be offered to women, often related to severity of a woman's PNA. PMH VCSE stakeholders emphasised that their services are flexible and accessible for women with PNA. CONCLUSION: Tension exists between what is currently recommended by NICE and thus commissioned, and the types of intervention that women want to access, including support from VCSE services. Clinicians should be aware of local VCSE organisations which provide care for women with PNA. There is an evidence gap around the effectiveness of various interventions delivered by VCSE organisations, which requires further exploration.


Assuntos
Atenção Primária à Saúde , Pesquisa Qualitativa , Humanos , Feminino , Gravidez , Adulto , Ansiedade/terapia , Complicações na Gravidez/terapia , Complicações na Gravidez/psicologia , Assistência Perinatal , Reino Unido
2.
Br J Gen Pract ; 74(suppl 1)2024 Jun 20.
Artigo em Inglês | MEDLINE | ID: mdl-38902058

RESUMO

BACKGROUND: Perinatal anxiety (PNA) occurs throughout the antenatal period or up to 1 year after childbirth, with a prevalence of 21%. AIM: To investigate if primary care records could be used to identify women at 'higher risk' of PNA. METHOD: Mixed-methods approach using quantitative and qualitative methods. Quantitative data analysis used Clinical Practice Research Datalink and IQVIA Medical Research Data to identify risk factors for PNA. Interviews explored the lived experiences of women with PNA about predisposing factors for PNA and acceptability of being informed of risk; and perspectives of primary healthcare professionals and Voluntary, Community, and Social Enterprise practitioners about risk communication. Interviews were conducted online, digitally recorded with consent, transcribed, and anonymised prior to analysis. Data were thematically analysed. Patient and clinical advisory groups informed each stage of the research. RESULTS: Women reflected on both positive and negative impacts of being identified at higher risk of PNA, a lack of understanding of how primary care records are used, and who has access to them. All interview participants suggested predisposing factors that would not be coded in primary care records. Quantitative analysis demonstrated that some predisposing factors for PNA can be identified in a woman's primary care records. Initial analysis suggests associations between PNA and infant health and healthcare use. CONCLUSION: While identification of higher risk of PNA may be acceptable, some factors that may contribute to PNA are not coded in primary care records. Identifying and managing PNA is needed to improve infant health.


Assuntos
Atenção Primária à Saúde , Humanos , Feminino , Gravidez , Adulto , Fatores de Risco , Ansiedade , Pesquisa Qualitativa , Medição de Risco , Complicações na Gravidez/psicologia , Assistência Perinatal , Prontuários Médicos
3.
Br J Gen Pract ; 74(suppl 1)2024 Jun 20.
Artigo em Inglês | MEDLINE | ID: mdl-38902097

RESUMO

BACKGROUND: Early Intervention in Psychosis (EIP) services offer treatment to people experiencing a first episode of psychosis. Service users may be referred from primary care and discharged directly back at the end of their time in an EIP service. AIM: To explore the role of primary care in supporting EIP service users (SUs) and to understand how to improve collaboration between primary and specialist care. METHOD: Qualitative study comprising semi-structured interviews with SUs, carers, healthcare professionals (HCPs), managers, and commissioners. Interviews were conducted either online or by telephone. Thematic analysis was carried out using principles of constant comparison. Patient and public involvement were key to all stages, including data analysis. RESULTS: In total, 55 interviews were conducted with SUs (n = 13), carers (n = 10), and GPs, EIP HCPs, managers, and commissioners (n = 33). GPs reported difficulties in referring people into EIP services and little contact with SUs while in EIP services, even about physical health. GPs suggested they were not included in planning discharge from EIP to primary care. SUs and carers reported that transition from EIP can lead to uncertainty, distress, and exacerbation of symptoms. GPs reported only being made aware of patients on or after discharge, with no contact for 3 years. GPs described difficulty managing complex medication regimes, and barriers to re-referral to mental health services. CONCLUSION: GPs have a key role in supporting people within EIP services, specifically monitoring and managing physical health. Inclusion of GPs in planning discharge from EIP services is vital.


Assuntos
Intervenção Médica Precoce , Atenção Primária à Saúde , Transtornos Psicóticos , Pesquisa Qualitativa , Encaminhamento e Consulta , Humanos , Transtornos Psicóticos/terapia , Masculino , Feminino , Serviços de Saúde Mental/organização & administração , Atitude do Pessoal de Saúde , Adulto , Cuidadores/psicologia
4.
Br J Gen Pract ; 2024 May 28.
Artigo em Inglês | MEDLINE | ID: mdl-38806207

RESUMO

BACKGROUND: People from ethnic minority groups are disproportionately affected by COVID-19, are less likely to access primary healthcare and report dissatisfaction with healthcare. Whilst the prevalence of Long Covid in ethnic minority groups is unclear, these groups are under-represented in Long Covid specialist clinics and Long Covid lived experience research which informed the original Long Covid healthcare guidelines. AIM: To understand lived experiences of Long Covid in people from ethnic minority groups. DESIGN & SETTING: Qualitative study with people living with Long Covid in the UK. METHOD: Semi-structured interviews with people who self-disclosed Long Covid were conducted (between June 2022 and June 2023) via telephone or video call. Thematic analysis was conducted. People living with Long Covid or caring for someone with Long Covid advised on all stages of the research. RESULTS: Interviews were conducted with 31 participants representing diverse socio-economic demographics. Help-seeking barriers included little awareness of Long Covid or available support and not feeling worthy of receiving care. Negative healthcare encounters were reported in primary healthcare; however, these services were crucial for accessing secondary or specialist care. There were further access difficulties and dissatisfaction with specialist care. Experiences of stigma and discrimination contributed to delays in seeking healthcare and unsatisfactory experiences, resulting in feelings of mistrust in healthcare. CONCLUSION: Experiences of stigma and discrimination resulted in negative healthcare experiences and mistrust in healthcare, creating barriers to help-seeking. Empathy, validation of experiences, and fairness in recognition and support of healthcare needs are required to restore trust in healthcare.

5.
Res Involv Engagem ; 10(1): 31, 2024 Mar 19.
Artigo em Inglês | MEDLINE | ID: mdl-38504379

RESUMO

BACKGROUND: This project (named Reinvent) aimed to promote Public Involvement (PI) in health research. Academics worked with a community group, the Eloquent Praise & Empowerment Dance Company, to develop a community partnership with young people from Black African, Asian and Caribbean heritage communities. The goal of this paper is to evaluate the Reinvent project for key learnings on how to engage and build partnerships with young people from Black African, Asian and Caribbean heritage communities. METHODS: Reinvent developed a steering group which consisted of five young people, one academic, a Race Equality Ambassador and the Director of Eloquent. The steering group co-produced an agenda for two workshops and the evaluation tools used. The content of the workshops included drama exercises, discussions on physical and mental health, nutrition and school-life, short introductions to the concepts of research and PI, and group work to critique and improve a video currently used to promote PI in health research to young people. The evaluation tools included using the 'Cube' evaluation framework, video-blogging and collecting anonymous feedback. Findings The responses to the 'Cube' evaluation framework were positive across all four domains (agenda, voice, contribute change) in both workshops. A few of the young people described having a better understanding of the meaning and practice of PI in a video-blog. The anonymous feedback suggested that the workshops had increased young people's confidence in sharing their thoughts and opinions about health and PI. CONCLUSION: Reinvent has shown that academic institutions and young people from an under-served community can partner to co-design workshops and apply evaluation tools. Working with young people in an environment in which they were comfortable, and by researchers joining in with the activities that the young people enjoyed (such as dance), enabled more informal and open conversations to develop. More work is needed to build upon this project so that young people can feel confident and supported to get involved in PI activities relating to research.

6.
Br J Gen Pract ; 2024 Mar 18.
Artigo em Inglês | MEDLINE | ID: mdl-38499296

RESUMO

Background People with new psychotic symptoms may be managed within an Early Intervention in Psychosis service (EIP). They may be discharged back to primary care at the end of their time in an EIP service. Aim To explore the role of primary care in supporting people with psychosis in an EIP service. Design and Setting Qualitative study, within a programme of work to explore the optimum duration of management within an EIP service. Methods Semi-structured interviews with people in EIP services, carers, general practitioners (GPs) and EIP practitioners. Findings GPs report difficulties in referring people into EIP services, have little contact with people who are supported by EIP services and are not included in planning discharge from EIP service to primary care. Conclusions This study suggests that GPs should have a role in the support of people within EIP services (in particular monitoring and managing physical health) and their carers. Inclusion of GPs in managing discharge from EIP services is vital. We suggest that a joint consultation with the service user, their carer (if they wish) along with EIP care co-ordinator and GP would make this transition smoother.

7.
BMC Med Educ ; 24(1): 126, 2024 Feb 08.
Artigo em Inglês | MEDLINE | ID: mdl-38331811

RESUMO

OBJECTIVES: To evaluate the impact a novel education programme - to improve research engagement, awareness, understanding and confidence - had on a diverse health and social care workforce. Barriers and facilitators to engagement were explored together with research capacity-building opportunities and ways to embed a research culture. The programme is entitled 'Supporting The Advancement of Research Skills' (STARS programme); the paper reports findings from a health and social care setting in England, UK. METHODS: A four-level outcome framework guided the approach to evaluation and was further informed by key principles of research capacity development and relevant theory. Quantitative data were collected from learners before and after engagement; these were analysed descriptively. Semi-structured online interviews were conducted with learners and analysed thematically. A purposive sample was achieved to include a diversity in age, gender, health and social care profession, and level of attendance (regular attendees, moderate attendees and non-attenders). RESULTS: The evaluation spanned 18 half-day workshops and 11 seminars delivered by expert educators. 165 (2% of total staff at Midlands Partnership University NHS Foundation Trust (MPFT)) staffs booked one or more education sessions; 128 (77%) including Allied Health Professionals (AHPs), psychologists, nursing and midwifery, and social workers attended one or more session. Key themes of engagement with teaching sessions, relevance and impact of training and promoting a research active environment were identified with relevant sub-themes. Positive impacts of training were described in terms of research confidence, intentions, career planning and application of research skills as a direct result of training. Lack of dedicated time for research engagement, work pressures and time commitments required for the programme were key barriers. Facilitators that facilitated engagement are also described. CONCLUSIONS: Findings demonstrate the impact that a free, virtual and high-quality research education programme had at individual and organisational levels. The programme is the product of a successful collaboration between health and social care and academic organisations; this provides a useful framework for others to adapt and adopt. Key barriers to attendance and engagement spoke to system-wide challenges that an education programme could not address in the short-term. Potential solutions are discussed in relation to protecting staff time, achieving management buy-in, recognising research champions, and having a clear communication strategy.


Assuntos
Apoio Social , Humanos , Inglaterra
8.
Neurosci Biobehav Rev ; 157: 105507, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38097097

RESUMO

People living with dementia commonly experience anxiety, which is often challenging to manage. We investigated the effectiveness of treatments for the management of anxiety in this population. We conducted a systematic review and meta-analysis of randomised controlled trials, and searched EMBASE, CINAHL, MEDLINE and PsycInfo. We estimated standardised mean differences at follow-up between treatments relative to control groups and pooled these across studies using random-effects models where feasible. Thirty-one studies were identified. Meta-analysis demonstrated non-pharmacological interventions were effective in reducing anxiety in people living with dementia, compared to care as usual or active controls. Specifically, music therapy (SMD-1.92(CI:-2.58,-1.25)), muscular approaches (SMD-0.65(CI:-1.02,-0.28)) and stimulating cognitive and physical activities (SMD-0.31(CI:-0.53,-0.09)). Pharmacological interventions with evidence of potential effectiveness included Ginkgo biloba, probiotics, olanzapine, loxapine and citalopram compared to placebo, olanzapine compared to bromazepam and buspirone and risperidone compared to haloperidol. Meta-analyses were not performed for pharmacological interventions due to studies' heterogeneity. This has practice implications when promoting the use of more non-pharmacological interventions to help reduce anxiety among people living with dementia.


Assuntos
Demência , Vida Independente , Humanos , Olanzapina , Ansiedade/terapia , Resultado do Tratamento , Demência/complicações , Demência/terapia
9.
Res Involv Engagem ; 9(1): 109, 2023 Nov 30.
Artigo em Inglês | MEDLINE | ID: mdl-38037160

RESUMO

BACKGROUND: Within the United Kingdom (UK), the National Institute for Health and Care Research is the largest funder of health and social care research, and additionally funds research centres that support the development and delivery of research. Each year, award-holders of these research centres are required to write a report about their activities, including a summary of Patient and Public Involvement and Engagement (PPIE) activities. This study aimed to evaluate the PPIE sections of annual reports to identify best practice and challenges; this could inform future delivery of PPIE activities. METHODS: A framework documentary analysis informed by the six UK Standards for Public Involvement ('Inclusive opportunities', 'Working together', 'Support and learning', 'Communications', 'Impact' and 'Governance') was conducted on 112 reports. A quality improvement framework ('Insights') was used to evaluate quality as one of: 'Welcoming', 'Listening', 'Learning' and 'Leading'. Recommendations from this review were co-developed with stakeholders and public contributors. RESULTS: Reports documented varying levels of quality in PPIE activities which spanned across all six UK Standards. Award-holders either intended to, or were actively working towards, increasing access and inclusivity of public involvement opportunities. Methods of working with public contributors were varied, including virtual and in-person meetings. Most award-holders offered PPIE support and learning opportunities for both public contributors and staff. Some award-holders invited public contributors to co-produce communication plans relating to study materials and research findings. The impact of public involvement was described in terms of benefits to public contributors themselves, and on an organisation and project level. Many award-holders reported inviting public contributors to share decision-making within and about governance structures. CONCLUSIONS: This evaluation identified that most annual reports contained evidence of good quality PPIE practice with learning from public contributors. Using the UK Standards and Insights framework enabled exploration of the breadth and quality of PPIE activities. Recommendations include the need for a platform for centres to access and share PPIE best practice and for centres to collaborate with local and national partners to build relationships with the public through inclusive community engagement.


WHAT DID WE DO?: Within the United Kingdom (UK) the National Institute for Health and Care Research (NIHR) is the largest funder of health and social care research. The NIHR also funds research centres that support the delivery of research studies. Each year, award-holders of these research centres are required to write a report describing their activities. These reports include activities related to Patient and Public Involvement and Engagement (PPIE). We aimed to evaluate the PPIE sections of these reports to identify best practice and challenges. This could, in turn, inform and aid researchers to enhance their PPIE approaches and improve how they work with the public in research. HOW DID WE DO IT?: We looked at 112 reports using the six UK Standards for Public Involvement (these include: 'Inclusive opportunities', 'Working together', 'Support and learning', 'Communications', 'Impact' and 'Governance'). We used a quality improvement framework named 'Insights' to categorise PPIE practice into one of four levels of increasing quality: 'Welcoming', 'Listening', 'Learning' and 'Leading'. WHAT ARE THE FINDINGS?: PPIE activities, of varying quality, covered all six UK Standards. A number of award-holders either intended, or were actively working towards, increasing access and inclusivity of public involvement opportunities. Methods of working with public contributors were varied. Most award-holders offered support and learning opportunities for both PPIE members and staff. Some award-holders invited PPIE members to co-produce communication plans relating to study materials and research findings. The impact of public involvement was described in terms of benefits to PPIE members themselves, and on a project and award-holder level. Many award-holders reported inviting public contributors to share decision-making within and about governance structures. WHAT'S THE BIGGER PICTURE?: This evaluation identified that the Insights framework was useful in determining the quality of PPIE activities relating to each UK Standard. Recommendations for improving the quality of future PPIE activities were co-developed with staff from different research centres, senior leaders within the NIHR, PPIE leads and public contributors.

10.
BJGP Open ; 7(4)2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37491083

RESUMO

BACKGROUND: Mental ill-health in older adults (aged 60 years and over) is often underdiagnosed and undertreated. Older adults are less likely to access mental health services owing to perceived stigma and fear of being a burden. Non-traditional providers of health care, such as the Fire and Rescue Services (FRS), provide a possible solution to facilitate early detection of problems and help-seeking among older adults, especially in the context of pressured statutory services. AIM: To examine whether and how FRS Home Fire Safety Visits (HFSV) could be optimised to include detection and signposting for mental health problems - particularly anxiety and depression - in older adults. DESIGN & SETTING: This mixed-method qualitative study took place in the West Midlands, UK in 2022. METHOD: This study involved focus groups (n = 24) and interviews with FRS staff (n = 4) to develop an in-depth contextual understanding of he acceptability and feasibility of expanding HFSV to include identification of anxiety and depression. RESULTS: FRS staff were open to expanding their HFSVs to include mental health, provided they had sufficient training and support from partner agencies in primary and social care settings to accept referrals for service users presenting with symptoms of anxiety and/or depression. CONCLUSION: The positive reputation of FRS staff and engagement with older adults suggests that HFSV could support the detection of anxiety and depression in older adults, and appropriate signposting to other services including primary care.

11.
BJGP Open ; 7(3)2023 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-37217213

RESUMO

BACKGROUND: Perinatal anxiety (PNA), anxiety that occurs during pregnancy and/or up to 12 months postpartum, is estimated to affect up to 21% of women, and may impact negatively on mothers, children, and their families. The National Institute for Health and Care Excellence (NICE) has called for further research around non-pharmacological interventions in primary care for PNA. AIM: To summarise the available international evidence on non-pharmacological interventions for women with PNA in a primary care population. DESIGN & SETTING: A meta-review of systematic reviews (SRs) with narrative synthesis was performed following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidance. METHOD: Systematic literature searches were conducted in 11 health-related databases up to June 2022. Titles, abstracts, and full-text articles were dual-screened against pre-defined eligibility criteria. A variety of study designs were included. Data were extracted about study participants, intervention design, and context. Quality appraisal was performed using the AMSTAR 2 tool (A MeaSurement Tool to Assess systematic Reviews). A patient and public involvement group informed and contributed towards this meta-review. RESULTS: Twenty-four SRs were included in the meta-review. Interventions were grouped into the following six categories for analysis purposes: psychological therapies; mind-body activities; emotional support from healthcare professionals (HCPs); peer support; educational activities; and alternative or complementary therapies. CONCLUSION: In addition to pharmacological and psychological therapies, this meta-review has demonstrated that there are many more options available for women to choose from that might be effective to manage their PNA. Evidence gaps are present in several intervention categories. Primary care clinicians and commissioners should endeavour to provide patients with a choice of these management options, promoting individual choice and patient-centred care.

14.
PLoS One ; 17(10): e0275166, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36191007

RESUMO

Some people experience prolonged symptoms following an acute COVID-19 infection including fatigue, chest pain and breathlessness, headache and cognitive impairment. When symptoms persist for over 12 weeks following the initial infection, and are not explained by an alternative diagnosis, the term post-COVID-19 syndrome is used, or the patient-defined term of Long Covid. Understanding the lived experiences of Long Covid is crucial to supporting its management. However, research on patient experiences of Long Covid is currently not ethnically diverse enough. The study aim is to explore the lived experience of Long Covid, using qualitative interviews and art-based methods, among people from ethnically diverse backgrounds (in the UK), to better understand wider systems of support and healthcare support needs. Co-created artwork will be used to build on the interview findings. A purposive sampling strategy will be used to gain diverse experiences of Long Covid, sampling by demographics, geographic locations and experiences of Long Covid. Individuals (aged >18 years) from Black and ethnic minority backgrounds, who self-report Long Covid symptoms, will be invited to take part in a semi-structured interview. Interviews will be analysed thematically. A sub-sample of participants will be invited to co-create visual artwork to further explore shared narratives of Long Covid, enhance storytelling and increase understanding about the condition. A patient advisory group, representing diversity in ethnicity and experiences of Long Covid, will inform all research stages. Stakeholder workshops with healthcare professionals and persons, systems or networks important to people's management of Long Covid, will advise on the integration of findings to inform management of Long Covid. The study will use patient narratives from people from diverse ethnic backgrounds, to raise awareness of Long Covid and help inform management of Long Covid and how wider social systems and networks may inform better healthcare service access and experiences.


Assuntos
COVID-19 , Etnicidade , COVID-19/complicações , COVID-19/epidemiologia , Humanos , Grupos Minoritários , Pesquisa Qualitativa , Reino Unido/epidemiologia , Síndrome de COVID-19 Pós-Aguda
15.
Health Expect ; 25(6): 2658-2679, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-36068931

RESUMO

BACKGROUND: Mental health problems experienced by older adults (60+ years of age) may remain hidden due to individual and system-level barriers. Opportunities to support early identification and management are therefore crucial. The National Health Service recommends wider public services that are embedded within local communities, but are not traditionally part of the healthcare landscape (i.e., 'nontraditional'), could facilitate engagement with healthcare by members of the public. Evidence for interventions involving Fire and Rescue, Police, Library services and postal workers, as nontraditional providers of mental health services, has not been synthesized previously. This review aims to understand how, why and in what contexts mental health interventions delivered by these nontraditional providers, to older adults, work. METHODS: A realist review of interventions to identify and/or manage mental health problems (depression with or without anxiety) experienced by older adults. Systematic, cluster and iterative literature searches were conducted. Intervention evidence was appraised for rigour and explanatory relevance and then coded to inform context-mechanism-outcome configurations (CMOCs). A public advisory group supported our initial evidence search strategy and definition of key terms. This review is registered with PROSPERO (CRD42020212498). RESULTS: Systematic searches revealed a dearth of evidence reporting mental health interventions delivered by nontraditional providers. Our scope was adjusted to consider interventions delivered by Fire and Police services only and for wider health and wellbeing concerns (e.g., dementia, falls prevention, mental health crises). Forty-three pieces of evidence were synthesized. Key themes included: legitimizing expanded roles, focusing on risk, intervention flexibility and organization integration; further subthemes are described. Themes map onto CMOCs and inform a preliminary programme theory. Findings were transposed to mental health contexts. CONCLUSIONS: Findings highlight challenges and opportunities for Fire and Police services, as nontraditional providers, to deliver interventions that identify and/or manage mental health problems among older adults. Our programme theory explains what could work, how, for whom and also by whom (i.e., which public services). Further empirical evidence is needed to test interventions, understand acceptability and inform implementation. PATIENT OR PUBLIC CONTRIBUTION: A public advisory group comprising older adults with lived experience of mental health problems and informal caregivers contributed to the original application, reviewed the scope and informed the approach to dissemination.


Assuntos
Depressão , Vida Independente , Idoso , Humanos , Cuidadores , Atenção à Saúde , Depressão/diagnóstico , Depressão/terapia , Medicina Estatal
16.
Health Soc Care Community ; 30(6): e5135-e5144, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-35906825

RESUMO

People of South Asian (SA) origin have a higher prevalence of dementia compared with the United Kingdom (UK) population as a whole. Little is known about how family carers of SA origin perceive dementia, manage access to dementia services, and how plans and preparations are made for end-of-life for loved ones with dementia. This qualitative study aimed to explore the experiences of carers of people with dementia of SA origin, living in the UK. Through semi-structured interviews, the perspective of caregivers of a person with dementia was explored from point of diagnosis to end-of-life preparation. Sixteen caregivers participated in face-to-face interviews. Four key themes are presented (i) lacking awareness at the start; (ii) living with the challenges of dementia; (iii) preparing for end-of-life; (iv) preferences for burial. Carers described difficulties in making sense of early symptoms and the behaviour changes they observed amongst their relatives with dementia. They described the tensions in trying to follow their religious and cultural identities of honouring the dignity and choices of the person with dementia. This study reports on the perspectives of SA carers of people with dementia, particularly exploring the end-of-life preparation and wishes of people with dementia in the UK. Family carers may benefit from accessing more culturally sensitive support when dementia is diagnosed, including such support when receiving formal day-to-day care. Importantly the findings suggest that planning and preparing to provide end-of-life for people with dementia should recognise and respect family and cultural contexts and religious beliefs.


Assuntos
Cuidadores , Demência , Humanos , População do Sul da Ásia , Pesquisa Qualitativa , Morte
18.
BMJ Open ; 12(4): e056420, 2022 04 08.
Artigo em Inglês | MEDLINE | ID: mdl-35396294

RESUMO

INTRODUCTION: Treatment-resistant schizophrenia (TRS) is associated with significant impairment of functioning and high treatment costs. Identification of patients at high risk of TRS at the time of their initial diagnosis may significantly improve clinical outcomes and minimise social and functional disability. We aim to develop a prognostic model for predicting the risk of developing TRS in patients with first-episode schizophrenia and to examine its potential utility and acceptability as a clinical decision tool. METHODS AND ANALYSIS: We will use two well-characterised longitudinal UK-based first-episode psychosis cohorts: Aetiology and Ethnicity in Schizophrenia and Other Psychoses and Genetics and Psychosis for which data have been collected on sociodemographic and clinical characteristics. We will identify candidate predictors for the model based on current literature and stakeholder consultation. Model development will use all data, with the number of candidate predictors restricted according to available sample size and event rate. A model for predicting risk of TRS will be developed based on penalised regression, with missing data handled using multiple imputation. Internal validation will be undertaken via bootstrapping, obtaining optimism-adjusted estimates of the model's performance. The clinical utility of the model in terms of clinically relevant risk thresholds will be evaluated using net benefit and decision curves (comparative to competing strategies). Consultation with patients and clinical stakeholders will determine potential thresholds of risk for treatment decision-making. The acceptability of embedding the model as a clinical tool will be explored using qualitative focus groups with up to 20 clinicians in total from early intervention services. Clinicians will be recruited from services in Stafford and London with the focus groups being held via an online platform. ETHICS AND DISSEMINATION: The development of the prognostic model will be based on anonymised data from existing cohorts, for which ethical approval is in place. Ethical approval has been obtained from Keele University for the qualitative focus groups within early intervention in psychosis services (ref: MH-210174). Suitable processes are in place to obtain informed consent for National Health Service staff taking part in interviews or focus groups. A study information sheet with cover letter and consent form have been prepared and approved by the local Research Ethics Committee. Findings will be shared through peer-reviewed publications, conference presentations and social media. A lay summary will be published on collaborator websites.


Assuntos
Antipsicóticos , Transtornos Psicóticos , Esquizofrenia , Antipsicóticos/uso terapêutico , Custos de Cuidados de Saúde , Humanos , Transtornos Psicóticos/terapia , Esquizofrenia/tratamento farmacológico , Medicina Estatal
20.
Br J Gen Pract ; 72(716): e179-e189, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-35131838

RESUMO

BACKGROUND: People with physical-mental comorbidity have a poorer quality of life, worse clinical outcomes, and increased mortality compared with people with physical conditions alone. People of South Asian (SA) origin are the largest minority group in the UK and are more likely to have long-term conditions (LTCs) such as diabetes and heart disease. People of SA origin are less likely to recognise symptoms that may represent mental health problems. AIM: To explore how people of SA origin with LTCs understand, experience, and seek help for emotional distress, depression, and anxiety. DESIGN AND SETTING: Systematic review of qualitative studies exploring emotional distress in people of SA origin with diabetes or coronary heart disease, within primary and community care settings worldwide. METHOD: Comprehensive searches of eight electronic databases from inception to 1 September 2021 were undertaken. Data extracted included study characteristics, and understanding, experience, and help-seeking behaviour for emotional distress. Thematic synthesis was undertaken. The Critical Appraisal Skills Programme (CASP) checklist for qualitative studies was used to assess quality of articles, and Confidence in the Evidence from Reviews of Qualitative Research (GRADE-CERQual) used to determine the overall strength of evidence. RESULTS: Twenty-one studies from 3165 unique citations were included. Three main themes were identified. Understanding of emotional distress: non-medical terminology used, such as 'tension', and a complex relationship between emotional and physical illness. Experiences of emotional distress: multiple forms of inequality, distress at diagnosis of their LTC, cultural factors, and sex differences. Help-seeking behaviour: self-management, support from family, friends, and faith, and inadequate clinical support. CONCLUSION: This review provides a greater understanding of the conceptualisation of emotional distress in the context of LTCs by people of SA origin, to support improvement in its recognition and management.


Assuntos
Angústia Psicológica , Qualidade de Vida , Ansiedade/epidemiologia , Povo Asiático , Depressão/epidemiologia , Feminino , Humanos , Masculino , Pesquisa Qualitativa , Qualidade de Vida/psicologia
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