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1.
PLoS Med ; 19(12): e1004139, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-36512523

RESUMO

BACKGROUND: Evidence regarding the presence and persistence of ethnic inequalities in mental healthcare is well established. The reasons for these inequalities and lack of progress in diminishing them are less understood. This meta-ethnography aims to provide a new conceptual understanding of how ethnic inequalities are created and sustained; this is essential to develop effective interventions. Specifically, we sought to understand why people from ethnic minority groups are underrepresented in primary care mental health service provision and overrepresented in crisis pathways and detention. METHODS AND FINDINGS: Following eMERGe guidelines for meta-ethnographies, we searched OpenGrey, Kings Fund, CINAHL, Medline, PsycINFO, and Social Care Online databases for qualitative articles published from database inception until October 2, 2022, using broad categories of search terms relating to "ethnicity AND (mental illness/mental health/emotional distress) AND (help-seeking/service utilisation/experience/perception/view)." We included all conceptually rich articles that used qualitative methods of data collection and analysis and excluded non-UK studies and those that focused solely on causation of mental illness. Our patient, public, and practitioner lived experience advisory group provided feedback and input on key stages of the project including search terms, research questions, data analysis, and dissemination. A total of 14,142 articles were identified; 66 met the inclusion criteria. We used reciprocal, refutational, and line of argument analytical approaches to identify convergence and divergence between studies. The synthesis showed that current models of statutory mental healthcare are experienced as a major barrier to the delivery of person-centred care to those in ethnic minority groups due to the perceived dominance of monocultural and reductionist frameworks of assessment and treatment (described as "medical" and "Eurocentric") and direct experiences of racist practice. The lack of socially oriented and holistic frameworks of knowledge and understanding in medical training and services is experienced as epistemic injustice, particularly among those who attribute their mental illness to experiences of migration, systemic racism, and complex trauma. Fear of harm, concerns about treatment suitability, and negative experiences with health providers such as racist care and medical neglect/injury contribute to avoidance of, and disengagement from, mainstream healthcare. The lack of progress in tackling ethnic inequalities is attributed to failures in coproduction and insufficient adoption of existing recommendations within services. Study limitations include insufficient recording of participant characteristics relating to generational status and social class in primary studies, which prevented exploration of these intersections. CONCLUSIONS: In this study, we found that the delivery of safe and equitable person-centred care requires a model of mental health that is responsive to the lived experiences of people in ethnic minority groups. For the people considered in this review, this requires better alignment of mental health services with social and anti-racist models of care. Our findings suggest that intersections related to experiences of racism, migration, religion, and complex trauma might be more relevant than crude ethnic group classifications. Strategies to tackle ethnic inequalities in mental healthcare require an evaluation of individual, systemic, and structural obstacles to authentic and meaningful coproduction and implementation of existing community recommendations in services.


Assuntos
Etnicidade , Serviços de Saúde Mental , Humanos , Grupos Minoritários , Atenção à Saúde , Antropologia Cultural , Reino Unido
2.
Med Humanit ; 48(1): 63-75, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-33509802

RESUMO

Breathlessness is a sensation affecting those living with chronic respiratory disease, obesity, heart disease and anxiety disorders. The Multidimensional Dyspnoea Profile is a respiratory questionnaire which attempts to measure the incommunicable different sensory qualities (and emotional responses) of breathlessness. Drawing on sensorial anthropology we take as our object of study the process of turning sensations into symptoms. We consider how shared cultural templates of 'what counts as a symptom' evolve, mediate and feed into the process of bodily sensations becoming a symptom. Our contribution to the field of sensorial anthropology, as an interdisciplinary collaboration between history, anthropology and the medical humanities, is to provide a critique of how biomedicine and cultures of clinical research have measured the multidimensional sensorial aspects of breathlessness. Using cognitive interviews of respiratory questionnaires with participants from the Breathe Easy groups in the UK, we give examples of how the wording used to describe sensations is often at odds with the language those living with breathlessness understand or use. They struggle to comprehend and map their bodily experience of sensations associated with breathlessness to the words on the respiratory questionnaire. We reflect on the alignment between cognitive interviewing as a method and anthropology as a disciplinary approach. We argue biomedicine brings with it a set of cultural assumptions about what it means to measure (and know) the sensorial breathless body in the context of the respiratory clinic (clinical research). We suggest the mismatch between the descriptions (and confusion) of those responding to the respiratory questionnaire items and those selecting the vocabularies in designing it may be symptomatic of a type of historical testimonial epistemic injustice, founded on the prioritisation of clinical expertise over expertise by experience.


Assuntos
Dispneia , Ciências Humanas , Antropologia , Dispneia/diagnóstico , Humanos , Sensação , Inquéritos e Questionários
3.
BMC Health Serv Res ; 20(1): 1085, 2020 Nov 26.
Artigo em Inglês | MEDLINE | ID: mdl-33243236

RESUMO

BACKGROUND: Domestic violence and abuse is a violation of human rights which damages the health and wellbeing of victims, their families and their friends. There has been less research on the experiences and support needs of male victims than those of women. Historically research on men's experiences has not focused on what constitutes effective, needs-led service provision. The aim of this paper was to conduct an integrated mixed methods synthesis of systematic review evidence on the topic of help-seeking by male victims of domestic violence and abuse. METHODS: An integrated mixed methods synthesis approach was taken to enhance our understanding of the complex phenomenon of help seeking by, and service provision to male victims. This process also identifies gaps in the evidence. Using previously identified systematic review data; mixed methods data from four primary-level service evaluation studies, along with expert and patient consultation were used to develop research propositions. Primary-level qualitative interview and survey data from 12 studies of men experiences were mapped onto the propositions to support them. RESULTS: Fourteen propositions were composed. Seven propositions were supported or at least partly supported by the qualitative data. These supported propositions were used to make recommendations for policy and practice particularly concerning service preferences of male victims. The remaining seven propositions were not specifically supported by the qualitative data. These unsupported propositions were used to develop research recommendations concerning the need to further understand the potential blurred boundaries of victim-perpetrator, hybrid perpetrator-victim experiences, men who are/have been victims of childhood sexual abuse and determining the level of risk for men. They also highlight the need to produce better guidance for the response of the police & the criminal justice system. Finally, they highlight the need to produce the most appropriate service for men in terms of access, linkage, substance/alcohol abuse, mental health, sexuality, and race. CONCLUSION: Integrated mixed-methods synthesis of systematic review evidence is a relatively novel approach. This approach can lead to recommendations for policy and practice as well as highlighting gaps in the research agenda as shown in this example.


Assuntos
Vítimas de Crime , Violência Doméstica , Delitos Sexuais , Criança , Feminino , Humanos , Masculino , Homens , Encaminhamento e Consulta , Inquéritos e Questionários
4.
Med Humanit ; 45(3): 294-303, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31371484

RESUMO

Health research is often bounded by disciplinary expertise. While cross-disciplinary collaborations are often forged, the analysis of data which draws on more than one discipline at the same time is underexplored. Life of Breath, a 5-year project funded by the Wellcome Trust to understand the clinical, historical and cultural phenomenology of the breath and breathlessness, brings together an interdisciplinary team, including medical humanities scholars, respiratory clinicians, medical anthropologists, medical historians, cultural theorists, artists and philosophers. While individual members of the Life of Breath team come together to share ongoing work, collaborate and learn from each other's approach, we also had the ambition to explore the feasibility of integrating our approaches in a shared response to the same piece of textual data. In this article, we present our pluralistic, interdisciplinary analysis of an excerpt from a single cognitive interview transcript with a patient with chronic obstructive pulmonary disease. We discuss the variation in the responses and interpretations of the data, why research into breathlessness may particularly benefit from an interdisciplinary approach, and the wider implications of the findings for interdisciplinary research within health and medicine.


Assuntos
Pesquisa Biomédica/métodos , Dispneia , Relações Interprofissionais , Comportamento Cooperativo , Interpretação Estatística de Dados , Humanos , Comunicação Interdisciplinar
5.
Health Expect ; 21(3): 585-596, 2018 06.
Artigo em Inglês | MEDLINE | ID: mdl-29222832

RESUMO

BACKGROUND: Long-term conditions (LTCs) in children require a high level of self-management. Written action plans (WAPs) have been advocated to guide decision-making and support self-management but there is uncertainty about how WAPs "work" and what aspects are important for successful implementation. OBJECTIVE: To review and synthesize existing qualitative evidence about the design and use of WAPs across childhood LTCs. METHOD: We undertook a systematic search of the literature (Medline, EMBASE, CiNAHL, PsycInfo, Web of science) from inception to May 2015; critically appraised included studies; and synthesized the findings, drawing on normalisation process theory. RESULTS: 3473 titles were screened and 53 papers read in full. Nine studies (four key, two minor and three of poor quality) contributed to our analysis, predominantly work on asthma from the USA and in specialist settings. WAPs may help to alleviate user worry and boost confidence. Confidence to act was closely linked to feelings of responsibility and authority. The value and use of WAPs are determined by multiple factors, and varies between different user groups. Logistical challenges include sharing a WAP between different stakeholders and keeping it up to date. Colour coding and pictures may enhance the appeal and usability of WAPS. CONCLUSION: WAPs are complex interventions but our understanding of their use and value in children with LTCs is limited. WAPs need to meet the needs of users who have different requirements/levels of understanding and confidence according to their different roles. Future research into WAPs needs to be both disease and context-specific.


Assuntos
Doença Crônica/terapia , Planejamento de Assistência ao Paciente , Pediatria , Autogestão , Asma , Criança , Doença Crônica/psicologia , Humanos , Pesquisa Qualitativa , Redação
6.
BMC Public Health ; 18(1): 204, 2018 01 31.
Artigo em Inglês | MEDLINE | ID: mdl-29386030

RESUMO

BACKGROUND: Diagnosis with Type 2 Diabetes is an opportunity for individuals to change their physical activity and dietary behaviours. Diabetes treatment guidelines recommend theory-based, patient-centred care and advocate the provision of support for patient motivation but the motivational experiences of people newly diagnosed with diabetes have not been well studied. Framed in self-determination theory, this study aimed to qualitatively explore how this patient group articulate and experience different types of motivation when attempting lifestyle change. METHODS: A secondary analysis of semi-structured interview data collected with 30 (n female = 18, n male = 12) adults who had been newly diagnosed with type two diabetes and were participants in the Early ACTID trial was undertaken. Deductive directed content analysis was performed using NVivo V10 and researcher triangulation to identify and describe patient experiences and narratives that reflected the motivation types outlined in self-determination theory and if/how these changed over time. RESULTS: The findings revealed the diversity in motivation quality both between and within individuals over time and that patients with newly-diagnosed diabetes have multifaceted often competing motivations for lifestyle behaviour change. Applying self-determination theory, we identified that many participants reported relatively dominant controlled motivation to comply with lifestyle recommendations, avoid their non-compliance being "found out" or supress guilt following lapses in behaviour change attempts. Such narratives were accompanied by experiences of frustrating slow behaviour change progress. More autonomous motivation was expressed as something often achieved over time and reflected goals to improve health, quality of life or family time. Motivational internalisation was evident and some participants had integrated their behaviour change to a new way of life which they found resilient to common barriers. CONCLUSIONS: Motivation for lifestyle change following diagnosis with type two diabetes is complex and can be relatively low in self-determination. To achieve the patient empowerment aspirations of current national health care plans, intervention developers, and clinicians would do well to consider the quality not just quantity of their patients' motivation. TRIAL REGISTRATION: ISRCTN ISRCTN92162869 . Retrospectively registered.


Assuntos
Diabetes Mellitus Tipo 2/prevenção & controle , Dieta/psicologia , Exercício Físico/psicologia , Estilo de Vida Saudável , Motivação , Adulto , Idoso , Diabetes Mellitus Tipo 2/diagnóstico , Diabetes Mellitus Tipo 2/psicologia , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Pesquisa Qualitativa
7.
Health Expect ; 19(3): 557-69, 2016 06.
Artigo em Inglês | MEDLINE | ID: mdl-25088009

RESUMO

BACKGROUND: Engaging clients in psychotherapy by managing their expectations is important for therapeutic success. Initial moments in first sessions of therapy are thought to afford an opportunity to establish a shared understanding of how therapy will proceed. However, there is little evidence from analysis of actual sessions of therapy to support this. OBJECTIVE: This study utilised recorded session logs to examine how therapists manage clients' expectations during the first two sessions of online Cognitive Behavioural Therapy (CBT). METHODS: Expectation management was investigated through conversation analysis of sessions from 176 client-therapist dyads involved in online CBT. The primary focus of analysis was expectation management during the initial moments of first sessions, with a secondary focus on expectations at subsequent points. ANALYSIS: Clients' expectations for therapy were most commonly managed during the initial moments of first sessions of therapy. At this point, most therapists either produced a description outlining the tasks of the first and subsequent sessions (n = 36) or the first session only (n = 108). On other occasions (n = 32), no attempt was made to manage clients' expectations by outlining what would happen in therapy. Observations of the interactional consequences of such an absence suggest clients may struggle to engage with the therapeutic process in the absence of appropriate expectation management by therapists. CONCLUSION: Clients may more readily engage from the outset of therapy when provided with an explanation that manages their expectation of what is involved. Therapists can accomplish this by projecting how therapy will proceed, particularly beyond the initial session.


Assuntos
Terapia Cognitivo-Comportamental , Depressão/terapia , Satisfação do Paciente , Relações Profissional-Paciente , Adolescente , Adulto , Idoso , Terapia Cognitivo-Comportamental/métodos , Comunicação , Feminino , Humanos , Internet , Masculino , Pessoa de Meia-Idade , Gravação em Fita , Resultado do Tratamento , Adulto Jovem
8.
Sociol Health Illn ; 38(3): 442-58, 2016 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-26403218

RESUMO

This paper explores ideas of symbolic violence inherent in the research encounter (Bourdieu 1999). After defining symbolic violence and how the concept enters into domestic violence and abuse (DVA) research, we discuss the challenges arising from a (DVA) survivor taking on the role of interviewer in a qualitative study nested within a UK primary care based trial: IRIS (Identification and Referral to Improve Safety). KS, a survivor of DVA, conducted interviews with 12 women who had been referred to a domestic violence agency by primary care clinicians taking part in the IRIS trial in two UK cities (Bristol and east London) during 2009. Field notes were kept during all of the research meetings with KS and these were included in analysis. Our analysis maps the research pathway of 'non-violent communication' and discusses the role of social symmetry and proximity in the research encounter. We conclude that while a welcoming disposition, empathy and active listening are all generic skills to qualitative research; if a researcher can enter fieldwork with a claim of social proximity and symmetry, their use of these generic skills is enhanced through a process of shared objectification and empowerment talk. We explore the limitations of social proximity, its relationship to feminist and anthropological theories of 'insider' research and its relevance to primary care research.


Assuntos
Violência Doméstica , Atenção Primária à Saúde/ética , Ensaios Clínicos Controlados Aleatórios como Assunto/ética , Sobreviventes/psicologia , Comportamento Cooperativo , Feminino , Humanos , Entrevistas como Assunto , Pesquisa Qualitativa , Ensaios Clínicos Controlados Aleatórios como Assunto/métodos , Projetos de Pesquisa , Reino Unido
9.
Med Teach ; 37(7): 611-630, 2015 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-25945945

RESUMO

BACKGROUND: General practice is increasingly used as a learning environment in undergraduate medical education in the UK. AIM: The aim of this project was to identify, summarise and synthesise research about undergraduate medical education in general practice in the UK. METHODS: We systematically identified studies of undergraduate medical education within a general practice setting in the UK from 1990 onwards. All papers were summarised in a descriptive report and categorised into two in-depth syntheses: a quantitative and a qualitative in-depth review. RESULTS: 169 papers were identified, representing research from 26 UK medical schools. The in-depth review of quantitative papers (n = 7) showed that medical students learned clinical skills as well or better in general practice settings. Students receive more teaching, and clerk and examine more patients in the general practice setting than in hospital. Patient satisfaction and enablement are similar whether a student is present or not in a consultation, however, patients experience lower relational empathy. Two main thematic groups emerged from the qualitative in-depth review (n = 10): the interpersonal interactions within the teaching consultation and the socio-cultural spaces of learning which shape these interactions. The GP has a role as a broker of the interactions between patients and students. General practice is a socio-cultural and developmental learning space for students, who need to negotiate the competing cultures between hospital and general practice. Lastly, patients are transient members of the learning community, and their role requires careful facilitation. CONCLUSIONS: General practice is as good, if not better, than hospital delivery of teaching of clinical skills. Our meta-ethnography has produced rich understandings of the complex relationships shaping possibilities for student and patient active participation in learning.

10.
Behav Cogn Psychother ; 43(6): 732-43, 2015 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-24960277

RESUMO

BACKGROUND: Engaging clients from the outset of psychotherapy is important for therapeutic success. However, there is little research evaluating therapists' initial attempts to engage clients in the therapeutic process. This article reports retrospective analysis of data from a trial of online cognitive behavioural therapy (CBT) for depression. Qualitative and quantitative methods were used to evaluate how therapists manage clients' expectations at the outset of therapy and its relationship with client retention in the therapeutic intervention. AIMS: To develop a system to codify expectation management in initial sessions of online CBT and evaluate its relationship with retention. METHOD: Initial qualitative research using conversation analysis identified three communication practices used by therapists at the start of first sessions: no expectation management, some expectation management, and comprehensive expectation management. These findings were developed into a coding scheme that enabled substantial inter-rater agreement (weighted Kappa = 0.78; 95% CI: 0.52 to 0.94) and was applied to all trial data. RESULTS: Adjusting for a range of client variables, primary analysis of data from 147 clients found comprehensive expectation management was associated with clients remaining in therapy for 1.4 sessions longer than those who received no expectation management (95% CI: -0.2 to 3.0). This finding was supported by a sensitivity analysis including an additional 21 clients (1.6 sessions, 95% CI: 0.2 to 3.1). CONCLUSIONS: Using a combination of qualitative and quantitative methods, this study suggests a relationship between expectation management and client retention in online CBT for depression, which has implications for professional practice. A larger prospective study would enable a more precise estimate of retention.


Assuntos
Terapia Cognitivo-Comportamental/métodos , Depressão/terapia , Internet , Cooperação do Paciente , Atitude do Pessoal de Saúde , Comunicação , Feminino , Humanos , Masculino , Relações Profissional-Paciente , Estudos Prospectivos , Ensaios Clínicos Controlados Aleatórios como Assunto , Estudos Retrospectivos , Resultado do Tratamento
11.
J Hum Traffick ; 10(3): 445-464, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39036779

RESUMO

This collaborative, qualitative study aimed to understand the impact that smartphone technology can have for survivors of human trafficking and slavery in relation to their mental health, well-being and social connections, access to services and levels of independence and isolation. The pilot project was conceived shortly before the COVID-19 pandemic by anti-slavery charity Unseen and the telecommunications company BT, in recognition of the potential of smartphone technology to enhance survivors' recovery from trauma. BT donated smartphones and SIM cards with 6-month call and data packages that Unseen distributed to survivors they were supporting. Seventy-four survivors received a smartphone; 27 survivors were interviewed and 12 Unseen staff completed a free-text survey exploring perceptions of the intervention. A well-being capability measure (ICECAP-A) was conducted with survivors at the start and end of the project. Researchers analyzed all data, triangulating across data sources. Analysis showed support staff play a key role in the success of the intervention to increase digital inclusion. Smartphones helped survivors develop skills to assist them in their move toward independent living and navigate the systems and services in their environment. The intervention was highly valuable to survivors for support, integration and access to services. Our findings suggest that suitable technology packages should be assessed for inclusion as standard support for survivors of modern slavery within the UK Government's National Referral Mechanism (NRM). Achieving this change in NRM policy will go some way to realize the United Nations 2030 Agenda, specifically SDG 3 (Good health and wellbeing for all at all ages), SDG 8 (Decent Work-inclusive and sustained economic growth) and SDG 16 (Peace, justice and strong institutions-inclusive societies and access to justice for all).

12.
Palliat Care Soc Pract ; 18: 26323524241274175, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39247716

RESUMO

Background: Festivals play an important role in improving death and grief literacy, enabling members of the public to engage with these often-sensitive topics. Good Grief Weston festival was co-designed and delivered with the community in Weston-super-Mare, a coastal town in South-West England with high levels of socioeconomic disadvantage but rich community assets. It was held in person over 8 days in May 2023. Objectives: To evaluate the reach and impact of Good Grief Weston festival and gather data to inform future festivals. Design: Mixed methods evaluation (survey and focus groups). Methods: Online and paper surveys assessing participants' characteristics and experiences were administrated during and after the festival. Survey participants who indicated their willingness to participate were invited to attend a focus group. Focus groups were recorded, transcribed and analysed using thematic analysis. Data were collected by trained community co-researchers. Results: Approximately 3000 people attended the festival. Of 204 completed surveys, 64.5% were from women, age range ⩽15 to ⩾75 years; 88.2% identified as White; 14.9% deaf, disabled/with a chronic condition; 18.9% neurodivergent; 9.0% gay, bisexual or queer. Festival participants were entertained (70.9%), inspired (68.5%), felt part of a like-minded community (54.3%), talked to someone new (49.2%), learnt about grief/bereavement (34.3%), shared or expressed experiences (30.3%) and found out about local support (19.7%). 71.3% reported that they felt more confident talking about grief after attending. Median experience rating was 5 (IQR 0; possible range 1 = poor to 5 = excellent). In free-text comments, participants expressed appreciation for the festival and described benefits in attending. Two focus groups were conducted (n = 8 participants, all women), lasting c.1.5 h. Focus groups added rich descriptions of the festival's value, and data to inform the next festival. Conclusion: Findings suggest festivals of this nature can play a central role in a public health approach.


What was the impact of Good Grief Weston festival? Why was the study done? Previous studies have shown that many people feel unsupported by their community after the death of a loved one. We designed a festival to improve knowledge and support for bereaved people. We did this study to assess how the festival affected the people who attended. What did the researchers do? The team included researchers and people and organisations from the local community. Together, we designed and ran a festival on the topic of death, grief and bereavement in Weston-super-Mare, a coastal town with areas of high deprivation. The festival took place over an eight-day period in May 2023 and included creative, interactive and educational events. The team collected feedback on attendees' experiences of the festival. We did this using online and paper feedback forms, postcards, and focus groups to collect as many opinions as possible. What did the researchers find? We found that a wide range of people attended the festival. Most people who took part in the research rated the festival as 'excellent'. They told us they learnt about grief and bereavement and found out about local support services. Attendees met new people, shared their experiences, and felt that the festival built community spirit. They also made suggestions to improve any future festivals. What do the findings mean? The findings show that in-person festivals can effectively engage the public on the topic of death, grief and bereavement. They can also help develop connections between people and organisations in communities. These connections and learning opportunities may help communities to support their members through bereavement.

13.
NPJ Prim Care Respir Med ; 33(1): 8, 2023 03 02.
Artigo em Inglês | MEDLINE | ID: mdl-36864067

RESUMO

Heated tobacco products have a rapid uptake, especially among young people, mostly where advertising is unregulated, as is the case in Romania. This qualitative study explores the influence of direct marketing methods of heated tobacco products on young people, their perception and behaviour towards smoking. We have carried out 19 interviews with smokers of heated tobacco products (HTPs) or/and combustible cigarettes (CCs) or non-smokers (NS), aged 18-26. Using the thematic analysis, we have identified three overarching themes: (1) people, places, and subjects of marketing, (2) engagement with risk narratives and (3) social body, family bonds, and autonomous self. Even if most of the participants have been exposed to a mix of marketing methods, they did not acknowledge the influence that marketing has on their decision to experience smoking. Young adults' decision to use heated tobacco products seems to be influenced by a cluster of reasons: overcoming the legislation gap which prohibits indoor use of combustible cigarettes but not heated tobacco products; the attractivity of the product (novelty, inviting appearance, technological appeal and price) and presumed less damaging effects on health.


Assuntos
Marketing , Produtos do Tabaco , Humanos , Adulto Jovem , Adolescente , Romênia , Fumar , Fumar Tabaco , Produtos do Tabaco/efeitos adversos
14.
Res Involv Engagem ; 9(1): 111, 2023 Dec 06.
Artigo em Inglês | MEDLINE | ID: mdl-38057911

RESUMO

BACKGROUND: Creative methods/practices have been highlighted as helpful to develop more collaborative, equitable research partnerships between researchers and communities/public-participants. We asked artist partners to design four online workshops, one on each research priority area: school environments and mental health; wellbeing within the Somali community; air pollution; health data. We aimed to understand whether creative processes can enable public-participants and researcher- participants to meet in a neutral space to discuss a research theme and begin to build collaborative relationships through more equal engagement. Ideas could be taken forwards with seed funding, providing opportunity for collaboration to continue beyond initial workshops. METHODS: Different artist partners designed and facilitated four workshops. Evaluation data was collected on each workshop using participatory observation and fieldnotes, alongside chatlog data, and one-to-one interviews with 21 workshop participants, providing a contextually rich, comparative evaluation across four diverse workshops. Analysis was thematically driven. RESULTS: Artist partners took different approaches to designing workshops. The workshops began with introductory games and activities, and there was less emphasis on introductions of people's roles, with the intention to avoid hierarchical dynamics. Whilst public-participants enjoyed this, some researchers found it challenging and reported confusions over their workshop roles. Disrupting usual practice and challenging norms was not always an easy experience. There were examples where emergent, co-created knowledge was enabled. However, it was more challenging to facilitate longer-term collaborative research projects from the workshops due to different stakeholder priorities, and lack of staff time/ less sense of ownership for further work. CONCLUSIONS: Creative activities can influence and impact the types of conversations between public-participants and researchers in a way that changes and challenges power dynamics, shifting towards public-participant driven discussion. Whilst deconstructing hierarchies is important, supporting researchers is key so that any discomfort can be productive and experienced as a vital part of co-production. Longer term collaborative research projects were limited, highlighting a need for facilitation beyond initial workshops, and a sense of ownership from workshop participants to take things forwards. Workshops like these may lend themselves well to research prioritisation. However, taking community-led ideas forwards within research funding landscapes remains challenging.


Create to Collaborate aimed to develop and facilitate creative public involvement workshops with members of the public, researchers, and community organisations, who were potentially interested in collaborating on a future health research project. We wanted to evaluate the extent to which creative, external facilitation by different artists could enable the development of more equal relationships and reduce power differences at the beginning of a research process. We worked with artists who designed and facilitated an online workshop, and community partners who helped recruit members of the public to increase diversity in participation. Then, we delivered and evaluated the workshops to understand different participants' experiences. Four workshops are reported in this article, each focused on a different topic: mental health in school environments, wellbeing in Bristol's Somali community, air pollution, and health data. We took observational notes at the workshops and conducted one-to-one qualitative interviews with 21 workshop participants. Feedback from public-participants taking part in creative workshops led by artist facilitators described them as 'engaging', 'comfortable' and 'equitable'. Researcher-participants reported workshops as 'open', 'inclusive' and 'engaging', whilst also reporting some confusion over what their own roles were and how much they could contribute as academic researchers. The project demonstrates a need for further clarity, particularly for researchers, over what roles may be in setting up a collaborative relationship, and possible disparity in expectations between those attending in an employment capacity and those joining as a public-participant in their own time.

15.
Pilot Feasibility Stud ; 9(1): 112, 2023 Jul 03.
Artigo em Inglês | MEDLINE | ID: mdl-37400911

RESUMO

BACKGROUND: Women who have experienced domestic violence and abuse (DVA) are at increased risk of developing post-traumatic stress disorder (PTSD) and complex PTSD (CPTSD). In 2014-2015, we developed a prototype trauma-specific mindfulness-based cognitive therapy curriculum (TS-MBCT) for the treatment of PTSD in a DVA population. This study aimed to refine the prototype TS-MBCT and evaluate the feasibility of conducting a randomised controlled trial (RCT) testing its effectiveness and cost-effectiveness. METHODS: Intervention refinement phase was informed by evidence synthesis from a literature review, qualitative interviews with professionals and DVA survivors, and a consensus exercise with experts in trauma and mindfulness. We tested the refined TS-MBCT intervention in an individually randomised parallel group feasibility trial with pre-specified progression criteria, a traffic light system, and embedded process and health economics evaluations. RESULTS: The TS-MBCT intervention consisted of eight group sessions and home practice. We screened 109 women in a DVA agency and recruited 20 (15 TS-MBCT, 5 self-referral to National Health Service (NHS) psychological treatment), with 80% follow-up at 6 months. Our TS-MBCT intervention had 73% uptake, 100% retention, and high acceptability. Participants suggested recruitment via multiple agencies, and additional safety measures. Randomisation into the NHS control arm did not work due to long waiting lists and previous negative experiences. Three self-administered PTSD/CPTSD questionnaires produced differing outcomes thus a clinician administered measure might work better. We met six out of nine feasibility progression criteria at green and three at amber targets demonstrating that it is possible to conduct a full-size RCT of the TS-MBCT intervention after making minor amendments to recruitment and randomisation procedures, the control intervention, primary outcomes measures, and intervention content. At 6 months, none of the PTSD/CPTSD outcomes ruled out a clinically important difference between trial arms indicating that it is reasonable to proceed to a full-size RCT to estimate these outcomes with greater precision. CONCLUSIONS: A future RCT of the coMforT TS-MBCT intervention should have an internal pilot, recruit from multiple DVA agencies, NHS and non-NHS settings, have an active control psychological treatment, use robust randomisation and safety procedures, and clinician-administered measures for PTSD/CPTSD. TRIAL REGISTRATION: ISRCTN64458065 11/01/2019.

16.
J Allergy Clin Immunol Pract ; 10(9): 2312-2323.e2, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-35487370

RESUMO

BACKGROUND: Biologics are an effective therapy for severe asthma. Home administration of biologics by patients is likely to facilitate their accessibility. Yet little is known about patients' and health care providers' (HCPs) perceptions regarding home administration of biologics. OBJECTIVE: The aim of this study is to create more insight into the perceptions and experiences of patients and HCPs regarding home administration of biologics in the context of the treatment of severe asthma. METHODS: A qualitative international study was performed in the Netherlands, United States, Australia, and United Kingdom. In each country, 2 focus groups were held with potential/recent and long-term users of biologics at home. Prior to the focus groups, patients were prompted with themes on online forums. For triangulation purposes, interviews were held with HCPs to discuss salient findings from forums and focus groups. Data were analyzed with qualitative content analysis. RESULTS: In total, 75 patients participated in the forums, of which 40 participated in the focus groups. Furthermore, 12 HCPs were interviewed. The following overarching themes were identified: living with severe asthma; practical aspects of using biologics; the role of HCPs regarding biologics; social support from family, friends, and others; effectiveness of biologics and other treatments; side effects of biologics. CONCLUSIONS: This study showed that, for those using biologics for severe asthma, the benefits of home administration of biologics usually outweigh inconvenience and side effects. Guided practice, accessible support contact, and monitoring including social support should be central in the transition from hospital to home administration of asthma biologics.


Assuntos
Asma , Produtos Biológicos , Asma/tratamento farmacológico , Produtos Biológicos/uso terapêutico , Pessoal de Saúde , Humanos , Pesquisa Qualitativa , Apoio Social
17.
Arts Health ; 13(1): 20-34, 2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-31038423

RESUMO

Background: Despite the prevalence of dyspnoea (the pathological term for breathlessness) amongst the general population and the diagnostic importance of dyspnoea for respiratory illness, public awareness of dyspnoea is poor with an estimated two million people with undiagnosed Chronic Obstructive Pulmonary Disorder in the UK. We explore whether therapeutic letter writing is a valuable arts health approach for those living with breathlessness. Methods: Eighty (80) participants took part in 10 workshops held in community-based settings. The overall approach was qualitative. We analysed the data thematically. Results: Informed by theories of story structure, our analysis explores letters written to the breath in terms of there being a protagonist, antagonist, a process of recognition and reconciliation. Conclusions: Writing a letter to the breath facilitates new ways of relating to breathlessness. Letters create a personal narrative and workshops create a public story. Further research should explore whether therapeutic letter writing can support communication about breathlessness with clinicians.


Assuntos
Comunicação , Dispneia/psicologia , Redação , Adulto , Idoso , Idoso de 80 Anos ou mais , Educação , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Adulto Jovem
18.
Artigo em Inglês | MEDLINE | ID: mdl-32161657

RESUMO

BACKGROUND: Domestic violence and abuse (DVA) is common and destructive to health. Post-traumatic stress disorder (PTSD) is a major mental health consequence of DVA. People who have experienced DVA have specific needs, arising from the repeated and complex nature of the trauma. The National Institute for Health and Care Excellence recommends more research on the effectiveness of psychological interventions for people who have experienced DVA. There is growing evidence that mindfulness-based interventions may help trauma symptoms. METHODS: Intervention refinement and randomized controlled feasibility trial. A prototype trauma-informed mindfulness-based cognitive therapy (TI-MBCT) intervention will be co-produced following qualitative interviews and consensus exercise with stakeholders. Participants in the feasibility trial will be recruited from DVA agencies in two geographical regions and randomized to receive either TI-MBCT or usual care (self-referral to the Improving Access to Psychological Therapies (IAPT) service). TI-MBCT will be delivered as a group-based eight-week program. It will not be possible to blind the participants or the assessors to the study allocation. The following factors will inform the feasibility of progressing to a fully powered trial: recruitment, retention, intervention fidelity, and the acceptability of the intervention and trial design to participants. We will also test the feasibility of measuring the following participant outcomes before and 6 months post-randomization: PTSD, dissociative symptoms, depression, anxiety, DVA re-victimization, self-compassion, and mother-reported child health. Process evaluation and economic analysis will be embedded within the feasibility trial. DISCUSSION: This study will lead to the development of a TI-MBCT intervention for DVA survivors with PTSD and inform the feasibility and design of a fully powered randomized controlled trial (RCT). The full trial will aim to determine the effectiveness and cost-effectiveness of a TI-MBCT intervention in improving the clinically important symptoms of PTSD in DVA survivors. TRIAL REGISTRATION: ISRCTN, ISRCTN64458065, Registered 11 January 2019.

19.
Soc Sci Med ; 68(1): 154-68, 2009 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-19013702

RESUMO

The UK National Institute for Clinical Excellence (NICE) Clinical Guidelines recommend routine prescription of antidepressants for moderate to severe depression. While many patients accept a prescription, one in three do not complete treatment. We carried out a meta-ethnography of published qualitative papers since 1990 whose focus is patients' experience of antidepressant use for depression, in order to understand barriers and facilitators to concordance and inform a larger qualitative study investigating antidepressant use over time. A systematic search of five databases was carried out, supported by hand searches of key journals, writing to first authors and examining reference lists. After piloting three critical appraisal tools, a modified version of the CASP (Critical Appraisal Skills Programme) checklist was used to appraise potentially relevant and qualitative papers. We carried out a synthesis using techniques of meta-ethnography involving translation and re-interpretation. Sixteen papers were included in the meta-ethnography. The papers fall into two related groups: (1) Papers whose focus is the decision-making relationship and the ways patients manage their use of antidepressants, and (2) Papers whose focus is antidepressants' effect on self-concept, ideas of stigma and its management. We found that patients' experience of antidepressants is characterised by the decision-making process and the meaning-making process, conceptualised here as the 'medication career' and 'moral career'. Our synthesis indicates ways in which general practitioners (GPs) can facilitate concordant relationships with patients regarding antidepressant use. First, GPs can enhance the potential for shared decision-making by reviewing patients' changing preferences for involvement in decision-making regularly throughout the patient's 'medication career'. Second, if GPs familiarise themselves with the competing demands that patients may experience at each decision-making juncture, they will be better placed to explore their patients' preferences and concerns--i.e. their 'moral career' of medication use. This may lead to valuable discussion of what taking antidepressants means for patients' sense of self and how their treatment decisions may be influenced by a felt sense of stigma.


Assuntos
Antidepressivos/uso terapêutico , Tomada de Decisões , Transtorno Depressivo/tratamento farmacológico , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Relações Médico-Paciente , Pesquisa Qualitativa , Sociologia Médica , Antropologia Cultural , Cultura , Transtorno Depressivo/etnologia , Humanos
20.
Patient Educ Couns ; 74(2): 258-63, 2009 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-18848413

RESUMO

OBJECTIVES: To explore patients newly diagnosed with Type 2 Diabetes Mellitus (T2DM) experiences of making single (diet) or multiple (diet and physical activity) changes in order to (1) assess whether patients experienced increases in physical activity as supporting or hindering dietary changes and vice versa, and (2) whether patients found making multiple lifestyle changes counterproductive or beneficial. METHODS: In-depth interviews with 30 individuals taking part in a randomised controlled trial that aimed to determine the effect of diet and physical activity on T2DM. Interviewees had been randomised to receive usual care, intensive dietary advice, or intensive dietary advice plus information on physical activity. Respondents were interviewed 6 and 9 months post-randomisation. They were asked about their experiences of making lifestyle changes. Data were analysed thematically. RESULTS: Findings suggest providing diet and physical activity information together encourages patients to use physical activity in strategic ways to aid disease management and that most patients find undertaking multiple lifestyle changes helpful. CONCLUSION: Increasing physical activity can act as a gateway behaviour, i.e. behaviour that produces positive effects in other behaviours. PRACTICE IMPLICATIONS: Practitioners should provide diet and physical activity information together to encourage patients to use physical activity strategically to maintain dietary changes.


Assuntos
Adaptação Psicológica , Atitude Frente a Saúde , Diabetes Mellitus Tipo 2/psicologia , Estilo de Vida , Educação de Pacientes como Assunto/métodos , Adulto , Idoso , Idoso de 80 Anos ou mais , Currículo , Diabetes Mellitus Tipo 2/prevenção & controle , Inglaterra , Exercício Físico , Comportamento Alimentar , Feminino , Necessidades e Demandas de Serviços de Saúde , Humanos , Acontecimentos que Mudam a Vida , Masculino , Pessoa de Meia-Idade , Motivação , Pesquisa Qualitativa , Ensaios Clínicos Controlados Aleatórios como Assunto , Autocuidado , Inquéritos e Questionários
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