14 results
Search Results
2. Public perspectives on inequality and mental health: A peer research study.
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Pinfold, Vanessa, Thompson, Rose, Lewington, Alex, Samuel, Gillian, Jayacodi, Sandra, Jones, Oliver, Vadgama, Ami, Crawford, Achille, Fischer, Laura E., Dykxhoorn, Jennifer, Kidger, Judi, Oliver, Emily J., and Duncan, Fiona
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AFFINITY groups ,RACISM ,UNEMPLOYMENT ,SOCIAL media ,RESEARCH methodology ,SOCIAL values ,MENTAL health ,INTERVIEWING ,EMIGRATION & immigration ,HEALTH status indicators ,VIOLENCE ,NONBINARY people ,GENDER ,EXPERIENCE ,QUALITATIVE research ,PHOTOGRAPHY ,FINANCIAL stress ,ACTION research ,RESEARCH funding ,HEALTH equity ,THEMATIC analysis ,SUFFERING ,HOMELESSNESS ,PSYCHOLOGICAL adaptation ,PUBLIC opinion ,SOCIAL integration ,PSYCHOLOGICAL resilience ,PSYCHOSOCIAL factors - Abstract
Introduction: Associations between structural inequalities and health are well established. However, there is limited work examining this link in relation to mental health, or that centres public perspectives. This study explores people's experience and sense‐making of inequality in their daily lives, with particular consideration of impacts on mental health. Methods: We conducted a peer research study. Participants had to live in one of two London Boroughs and have an interest in inequalities and mental health. Using social media, newsletters, local organisations and our peer researchers' contacts, we recruited 30 participants who took photos representing their experience of inequality and discussed them during semi‐structured interviews. Data were analysed using reflexive thematic analysis. Results: Three themes were identified in this study: (1) inequalities are unjust, multilayered and intertwined with mental health. Accounts demonstrated a deep understanding of inequalities and their link to mental health outcomes, describing inequalities as 'suffering' and 'not good for anyone'. Financial, housing, immigration and healthcare problems exacerbated poor mental health, with racism, gender‐based violence and job loss also contributing factors for both poor mental health and experiences of inequality; (2) inequalities exclude and have far‐reaching mental health consequences, impacting personal sense of belonging and perceived societal value and (3) moving forwards—addressing long‐standing inequality and poor public mental health necessitated coping and resilience strategies that are often unacknowledged and undervalued by support systems. Conclusion: Lived experience expertise was central in this study, creating an innovative methodological approach. To improve public mental health, we must address the everyday, painful structural inequalities experienced by many as commonplace and unfair. New policies and strategies must be found that involve communities, redistributing resources and power, building on a collective knowledge base, to coproduce actions combatting inequalities and improving population mental health. Patient or Public Contribution: This study was peer‐led, designed and carried out by researchers who had experiences of poor mental health. Six authors of the paper worked as peer researchers on this study. [ABSTRACT FROM AUTHOR]
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- 2024
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3. Exploring participatory health research and its application to speech and language therapy research practices.
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Connery, Amy and Salsberg, Jon
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EVIDENCE gaps , *STUTTERING , *DISCUSSION , *COMMUNICATIVE disorders research , *ACTION research , *CONCEPTUAL structures , *RESEARCH methodology , *TREATMENT of communicative disorders , *SPEECH therapy - Abstract
Background: The role of participatory health research (PHR) is increasingly acknowledged by funding bodies, researchers and civil society globally; however, it continues to be under‐represented in the speech and language therapy (SLT) research literature. This collaborative research approach is associated with the increased application of research evidence, and the generation of positive impacts in practice, policy, health systems and society. Aims: To increase researchers' and other participatory partners' understanding of PHR, and to demonstrate its applicability to research in the SLT field. Methods & Procedures: This aim is achieved through a discussion on PHR, its principles, benefits and challenges, and the evaluation of its impact. A recently developed evaluation framework to support the implementation of best engagement practices is examined, and recommendations for how this framework can be used to plan and evaluate engagement in participatory stuttering research is presented. Main contribution: This paper serves as an important conversation on the value of PHR to SLT research, and presents guidance to support its increased implementation in this research field. Conclusions & Implications: Conclusions & Implications: PHR remains an under‐represented research approach in the SLT literature, despite increasing evidence demonstrating its effectiveness and value. It offers a potential solution to the research–practice gap, and challenges the ongoing research hierarchies by democrating the process of knowledge production. WHAT THIS PAPER ADDS: What is already known on this subject: PHR is increasingly attracting the attention of funders, researchers and decision‐makers due to a growing body of evidence in support of this collaborative research approach. Despite its potential to bridge the research–practice gap, PHR remains significantly under‐represented in the SLT research literature. What this paper adds to the existing knowledge: This paper discusses the principles, benefits, challenges and impact evaluation of PHR. A recently developed evaluation framework for supporting the implementation of best engagement practices is examined. A demonstration of how this framework can be used to plan and evaluate engagement in participatory stuttering research is presented. What are the potential or actual clinical implications of this work?: Speech and language therapists play a key role in PHR, as co‐researchers contributing essential context‐based knowledge. It is therefore imperative that they understand the principles and practices of this approach in order to maximize their input in future participatory partnerships. [ABSTRACT FROM AUTHOR]
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- 2024
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4. Developing a living lab in ethics: Initial issues and observations.
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Racine, Eric, D'Anjou, Bénédicte, Dallaire, Clara, Dumez, Vincent, Favron‐Godbout, Caroline, Hudon, Anne, Montreuil, Marjorie, Olivier, Catherine, Quintal, Ariane, and Chenel, Vanessa
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SCHOOL environment , *INTERDISCIPLINARY research , *ETHICS , *STAKEHOLDER analysis , *COMMUNITIES , *ACTION research , *INTERPROFESSIONAL relations , *INTELLECT , *DIFFUSION of innovations , *BIOETHICS , *GOAL (Psychology) - Abstract
Living labs are interdisciplinary and participatory initiatives aimed at bringing research closer to practice by involving stakeholders in all stages of research. Living labs align with the principles of participatory research methods as well as recent insights about how participatory ways of generating knowledge help to change practices in concrete settings with respect to specific problems. The participatory, open, and discussion‐oriented nature of living labs could be ideally suited to accompany ethical reflection and changes ensuing from reflection. To our knowledge, living labs have not been explicitly trialed and reported in ethics literature. In this discussion paper, we report and discuss four initial issues that marked the process of setting up a living lab in ethics: (1) determining the goals and expected outcomes of an ethics living lab; (2) establishing operational procedures; (3) selecting communities and defining pilot projects; and (4) adopting a lens to tackle emerging questions and challenges. We explain these four issues and present the paths taken based on the novel and specific orientation, that is, living ethics, at the basis of this project. In alignment with living ethics and É‐LABO, we approach challenges as learning opportunities to ask not only "how" questions but also "why" questions. We hope that this discussion paper informed by our experience helps to clarify the theoretical, methodological, and practical approaches necessary to successfully adopt and employ living labs in ethics. [ABSTRACT FROM AUTHOR]
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- 2024
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5. Distinguishing sympathisers, philanthropists, rusted on activists and radicals: Using person‐centred analyses in collective action research.
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Thomas, Emma F., Yip, Lisette, and Lizzio‐Wilson, Morgana
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ACTION research , *RADICALS , *COLLECTIVE action , *PHILANTHROPISTS , *PSYCHOLOGICAL research , *SOCIAL psychology - Abstract
Many of our theories and models within social psychology implicitly refer to 'types' or subgroups of people who engage in collective action (activists, protestors), or do not (sympathisers, bystanders). Other frameworks differentiate between actors based on their adoption of tactics (benevolents, activists, radicals). How, empirically, do we distinguish sympathisers from activists? Activists from radicals? This paper describes recent research that adopts person‐centred statistical approaches (e.g., latent profile analysis, latent transition analysis, latent growth mixture models) to address three contemporary puzzles of collective action research. We present research showing that the methods are useful in identifying and explaining sub‐groups of people who seek to bring about change in qualitatively different ways. The methods are also useful for understanding volatility in collective action as well as identifying and understanding variation in how people sustain, increase, or diminish their commitment over time. There is nothing so practical as a good method and person‐centred statistical approaches are an important complement to variable‐centred approaches in social psychological research on collective action. [ABSTRACT FROM AUTHOR]
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- 2024
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6. Recontextualising Stenhouse: Instantiations of the ‘teacher as researcher’ metaphor in Greece and Cyprus.
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Philippou, Stavroula and Tsafos, Vassilis
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TEACHER development , *METAPHOR , *GREEK language , *CURRICULUM change , *CURRICULUM planning , *LANGUAGE research - Abstract
This paper explores the transfer, translation and recontextualisation of Laurence Stenhouse's work, as encapsulated in the ‘teacher as researcher’ metaphor, to the Greek language and in the fields of research and policy in Greece and Cyprus. We first briefly frame action research work as emerging through and within a specific space‐time (and in conversation with others in North America, Australia and Europe). We then trace its translation from English to Greek in specific key publications in books and articles (including his 1975 seminal work An introduction to curriculum research and development), which have since been central to curriculum studies as an academic field in both countries. We then construct four vignettes as cases of different uses of the metaphor in different fields. The first two refer to the institutional context of a new type of school called ‘second chance schools’ and a state policy for the professional development of teachers in Greece. The other two refer to an initial teacher education university programme and to the most recent school curriculum change in the Republic of Cyprus. We conclude by discussing certain patterns of constriction across the four vignettes in the recontextualisation of the ‘teacher as researcher’ to particular aspects of the metaphor as it morphed in two rather centralised contexts with a strong historical presence of a formal, state‐mandated curriculum and of teachers as public servants. Despite these patterns of constriction, we also note how other aspects of the metaphor provided conditions for some transformation. [ABSTRACT FROM AUTHOR]
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- 2024
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7. Specifying features in terms of domain models: MuDForM method definition and case study.
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Deckers, Robert and Lago, Patricia
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METHODS engineering , *COMPUTER software development , *ACTION research , *SAFETY standards - Abstract
To enable the people involved in a software development process to communicate and reason close to their area of knowledge, we are investigating and engineering a method that formalizes and integrates knowledge of multiple domains into domain models and into specifications in terms of those domain models. We follow an action research approach, starting with a diagnosis phase, in which we have previously defined a set of method objectives, and performed a systematic literature review. During action planning, we defined how we are going to develop the method—called Multi‐Domain Formalization Method (MuDForM). This paper reports on the methodical support for using a domain model as the terminology for feature specifications. During action taking, we defined an initial version of the method and set up case studies. During the evaluation phase, we performed a case study to validate how well the method helps in the specification of processes and to realize the case‐specific objectives of the customer. The case study pertains to the formalization of the ISO26262 standard for functional safety in the automotive domain. The created models are explained to the involved experts to ensure their consistency with the original text. We found that MuDForM is suitable to systematically formalize processes described in natural language, such that the resulting process models are fully expressed in terms of domain concepts and concepts from outside the domains and processes of interest. Further, during the specifying learning phase, we have extended our method with concepts, steps, and guidelines for grammatical analysis, for formalization of constraints, and for the specification of processes. [ABSTRACT FROM AUTHOR]
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- 2024
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8. Teacher‐composed cases of practice as and for dissemination, reflection and data.
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Cowie, Bronwen, Trask, Suzanne, and Edwards, Frances
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EDUCATION research , *TEACHER attitudes , *ACTION research , *BUSINESS partnerships , *SOCIAL support - Abstract
The need to make evidence and implications of educational research widely available has prompted a burgeoning interest in knowledge mobilisation, which is a set of strategies supporting the active and intentional dissemination of research knowledge. For this, it is important to consider who might be the intended audience and end‐users of this knowledge, as this impacts decisions throughout the research process. Researcher–teacher collaborations are effective contexts for knowledge‐building and sharing, where both partners have different but equally valuable roles and contributions to make to the conduct, analysis and dissemination of research. This paper illustrates the value and uses of teacher‐composed written and video cases of colleague coaching. The cases were generated as part of the Zooming project, a seven‐school, 3‐year research–practice partnership focused on developing teachers' data literacy and capacity to coach colleagues in this. To craft the cases, the teachers reflected on their coaching practices and relationships and identified what would be most useful for new coaches to know. The cases proved to be engaging tools for research dissemination, especially to a professional audience. In addition, the case writing challenged teachers to reflect on and analyse their coaching actions and the assumptions they brought to collegial coaching. The cases as data also provided researchers with a deeper level of insights into what teachers viewed as salient when coaching colleagues in data use. Teacher case composition offers a useful approach to knowledge co‐production and a pathway to research dissemination by and for teachers and researchers. [ABSTRACT FROM AUTHOR]
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- 2024
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9. Exploring the experiences of autistic pupils through creative research methods: Reflections on a participatory approach.
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Lewis, Kathryn, Hamilton, Lorna G., and Vincent, Jonathan
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QUALITATIVE research , *RESEARCH funding , *AUTISM , *NEURODIVERSITY , *POSITIVE psychology , *LONGITUDINAL method , *EXPERIENCE , *RESEARCH protocols , *MEDICAL research , *ACTION research , *CONTENT mining , *CHILDREN - Abstract
The use of creative qualitative research methods in psychology and other disciplines has increased over recent decades to address power imbalances within research and to centre the voices of participants. These considerations are particularly salient when conducting research with historically marginalized groups, including neurodivergent people. However, research foregrounding the first‐person perspectives of neurodivergent children is still limited. In this paper, we discuss the application of creative qualitative research methods when conducting research with neurodivergent children with a range of communication and wider skill profiles. The benefits and challenges of each method are considered, drawing on examples from the first phase of an ongoing longitudinal study. Additional considerations for working ethically and respectfully with neurodivergent children are discussed. Readers are encouraged to consider how best to adapt their research protocols when working with neurodivergent children, in order to minimize research hierarchies, build positive relationships, and produce rich and meaningful data. [ABSTRACT FROM AUTHOR]
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- 2024
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10. Emotion Labor as Professional Development Work: Insights from Teachers Doing Action Research.
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Nazari, Mostafa, Karimpour, Sedigheh, and Ranjbar, Mohammadali
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CAREER development ,TEACHER development ,ENGLISH teachers ,ACTION research ,EMOTION recognition ,EMOTIONS ,LANGUAGE teachers - Abstract
Over the past decades, research on language teachers' engagement in action research (AR) and more recently on their emotion labor has exponentially grown. However, little research is available on how AR and emotion labor intersect to shape language teacher professional development. This study addressed this gap by reporting on how four Iranian English language teachers used emotion labor as professional development work during participation in an AR project. Data were collected from reflective journals and classroom observations as well as the associated postclass discussions during the enactment of AR, and from interviews at two junctures in time, once during the course and once longitudinally after six and 12 months. Data analyses revealed that the teachers used AR as a mechanism for minimizing the gap between their internal feelings and external expectations, and gradually developed the identity of a teacher–researcher by using the affordances emotion labor provided. Moreover, the teachers retrospectively developed emotional learning, which facilitated their response to institutional expectations in the short term and to the professional discourses of teaching in the long term. We conclude the paper with implications for teacher education to better understand how emotions feature in AR and how emotion labor could be employed for AR‐induced professional development. [ABSTRACT FROM AUTHOR]
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- 2024
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11. Experiences of Living With the Nonmotor Symptoms of Parkinson's Disease: A Photovoice Study.
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Smith, Laura J., Callis, Jerri, Bridger‐Smart, Shannon, and Guilfoyle, Olivia
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PARKINSON'S disease treatment ,QUALITATIVE research ,RESEARCH funding ,STATISTICAL sampling ,PARKINSON'S disease ,PHOTOGRAPHY ,EMOTIONS ,PSYCHOLOGICAL adaptation ,CONFIDENCE ,DESCRIPTIVE statistics ,THEMATIC analysis ,QUALITY of life ,ACTION research ,RESEARCH ,NEEDS assessment ,SOCIAL support ,INTERPERSONAL relations ,DATA analysis software ,PATIENTS' attitudes ,ACTIVITIES of daily living ,WELL-being ,SELF-perception ,SOCIAL participation ,SOCIAL isolation ,SYMPTOMS - Abstract
Background: Nonmotor symptoms (NMSs) are frequently experienced by people with Parkinson's disease (PD) and are often perceived as their most bothersome symptoms. However, these remain poorly understood with suboptimal clinical management. These unmet needs are an important determinant of health‐related quality of life (QoL) in PD. Objective: The aim of this study was to gain insights into the experience of living with the NMS of PD in real‐time using participatory action methodology. Method: Using the photovoice method, 14 people with PD took photographs to document their experiences of living with the NMS of PD. They composed corresponding written narratives to capture the impact of NMS on their daily activities and QoL. In total, 152 photographs and corresponding narratives were analysed using thematic analysis with an inductive approach. Results: Four interrelated themes were identified. Emotional well‐being and sense of self encompassed a process of adjustment to living with PD. Engaging in valued activities, adopting a positive mindset and utilising coping strategies were thought to enhance confidence and self‐esteem. Social support and societal awareness highlighted the importance of supportive relationships and socialising to aid participation and avoid isolation. Barriers to social engagement included the unpredictability of NMS and nonvisible NMS being neglected or misunderstood. Conclusion: Findings demonstrated the far‐reaching impact of nonmotor aspects of PD on emotional, occupational and social dimensions. These needs could be addressed through person‐centred and comprehensive approaches to care. Patient or Public Contribution: This study utilised a participatory research approach allowing participants to choose the subjects that mattered to them and how to present their results. Additionally, a group workshop was held with people with PD, their family members and healthcare professionals to guide theme development. [ABSTRACT FROM AUTHOR]
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- 2024
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12. Engaging women to set the research agenda for assisted vaginal birth.
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Torloni, Maria R., Campos, Lucia F., Coullaut, Arantza, Hartmann, Katharina, Opiyo, Newton, Bohren, Meghan, Bonet, Mercedes, and Betrán, Ana P.
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MIDDLE-income countries ,DELIVERY (Obstetrics) ,VAGINA ,RESEARCH funding ,RESEARCH evaluation ,PSYCHOLOGY of women ,JUDGMENT sampling ,DESCRIPTIVE statistics ,SURVEYS ,EXPERIENCE ,EXPERIMENTAL design ,MEDICAL research ,ACTION research ,ADULT education workshops ,PRIORITY (Philosophy) ,PATIENT participation ,LOW-income countries ,VIDEO recording - Abstract
Introduction: Public and patient involvement can provide crucial insights to optimise research by enhancing relevance and appropriateness of studies. The World Health Organization (WHO) engaged in an inclusive process to ensure that both technical experts and women had a voice in defining the research gaps and needs to increase or reintroduce the use of assisted vaginal birth (AVB) in settings where this intervention is needed but unavailable or underused. Methods: We describe the methods and outcomes of online workshops led by WHO to obtain women representatives' perspectives about AVB research gaps and needs. Results: After technical experts created a list of research questions based on various evidence syntheses, WHO organised four online workshops with 31 women's representatives from 27 mostly low‐ and middle‐income (LMIC) countries. Women rated the importance and priority of the research questions proposed by the technical experts, improving and broadening some of them, added new questions, and voiced their main concerns and views about AVB. Women helped to put the research questions into context in their communities, highlighted neglected factors/dimensions that influence practices and affect women's experience during labour and childbirth, underscored less salient consequences of AVB, and highlighted the main concerns of women about research on AVB. The consolidated vision of technical experts and women's representatives resulted in a technical brief published by WHO. The technical brief is expected to stimulate global research and action closely aligned with women's priorities. Conclusions: We describe a successful experience of engaging women, mostly from LMICs, in the identification of research gaps and needs to reintroduce AVB use. This process contributed to better aligning research questions with women's views, concerns, and priorities. Given the scarcity of reports about engaging women from LMICs to optimise research, this successful experience can serve as an inspiration for future work. Patient or Public Contribution: Women representatives were involved at every stage of the workshops described in full in this manuscript. [ABSTRACT FROM AUTHOR]
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- 2024
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13. Patient and public involvement in the development of health services: Engagement of underserved populations in a quality improvement programme for inflammatory bowel disease using a community‐based participatory approach.
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Sheldon, Elena, Ezaydi, Naseeb, Ditmore, Melanie, Fuseini, Olga, Ainley, Rachel, Robinson, Kerry, Hind, Daniel, and Lobo, Alan J.
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HEALTH services accessibility ,MEDICAL care use ,HEALTH literacy ,AFRICANS ,HUMAN services programs ,MENTAL health ,INTERPROFESSIONAL relations ,MEETINGS ,DIVERSITY & inclusion policies ,RESPECT ,RESEARCH funding ,MEDICAL care ,AT-risk people ,LGBTQ+ people ,LEADERSHIP ,FIELD notes (Science) ,CONTINUUM of care ,JUDGMENT sampling ,PATIENT advocacy ,DESCRIPTIVE statistics ,INFLAMMATORY bowel diseases ,THEMATIC analysis ,MUSLIMS ,ACTION research ,COMMUNICATION ,CARIBBEAN people ,QUALITY assurance ,MINORITIES ,SOCIAL support ,HEALTH promotion ,INTERPERSONAL relations ,PATIENT participation ,COMMUNITY-based social services ,COMMUNICATION barriers ,SOCIAL stigma ,REFUGEES - Abstract
Introduction: Involving people with lived experience is fundamental to healthcare development and delivery. This is especially true for inflammatory bowel disease (IBD) services, where holistic and personalised models of care are becoming increasingly important. There is, however, a significant lack of representation of underserved and diverse groups in IBD research, and there are significant barriers to healthcare access and utilisation among minority groups in IBD. IBD centres need to be aware of these experiences to address barriers via service changes, improve interactions with local communities and promote meaningful engagement for improved health outcomes. Methods: A pragmatic community‐based approach was taken to engage with leaders and members of underserved groups across 11 workshops representing Roma, Afro‐Caribbean, people of African descent and the wider black, Asian and minority ethnic (BAME) communities, Muslim women, refugee community members, deprived areas of South Yorkshire, LGBTQ+ and deaf populations. Thematic analysis of field notes identified patterns of attention across the community groups and where improvements to services were most frequently suggested. Results: Findings demonstrated several barriers experienced to healthcare access and utilisation, including language accessibility, staff attitudes and awareness, mental health and stigma, continuity of support, and practical factors such as ease of service use and safe spaces. These barriers acted as a lever to co‐producing service changes that are responsive to the health and social care needs of these groups. Conclusions: Engaging with people from a range of communities is imperative for ensuring that service improvements in IBD are accessible and representative of individual needs and values. Patient or Public Contribution: Local community leaders and members of community groups actively participated in the co‐design and development of improvements to the IBD service for a local hospital. Their contributions further informed a pilot process for quality improvement programmes in IBD centres. [ABSTRACT FROM AUTHOR]
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- 2024
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14. Implementing peer support work in mental health care in Germany: The methodological framework of the collaborative, participatory, mixed‐methods study (ImpPeer‐Psy5).
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von Peter, Sebastian, Kraemer, Ute Maria, Cubellis, Lauren, Fehler, Georgia, Ruiz‐Pérez, Guillermo, Schmidt, Daniela, Ziegenhagen, Jenny, Kuesel, Madeleine, Ackers, Susanne, Mahlke, Candelaria, Nugent, Lena, and Heuer, Imke
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MENTAL illness treatment ,AFFINITY groups ,RESEARCH ,HUMAN research subjects ,RESEARCH methodology ,STAKEHOLDER analysis ,PATIENT selection ,HUMAN services programs ,CONCEPTUAL structures ,CONTENT mining ,SUPPORT groups ,ACTION research ,INTERPROFESSIONAL relations ,RESEARCH funding ,DATA analysis ,PSYCHIATRIC treatment - Abstract
Background: Starting in the 1990s in the United States, individuals with lived experience of mental health crises and recovery have been employed as peer support workers (PSWs) internationally. However, the implementation of PSW in clinical contexts remains challenging. Methods: This manuscript presents and discusses the methodological framework of the ImpPeer‐Psy5 study on the PSW implementation in the German mental healthcare sector. This study used a mixed‐methods and collaborative research approach, as well as participatory research strategies. After describing the study design, populations, teamwork and assessments, the epistemic challenges of its methodological framework will be critically discussed and how it has iteratively shaped the object of study. Discussion and Practical Implications: The healthcare, policy and funding context of PSW implementation as well as the study's methodological framework have differently influenced the ways in which the implementation of PSW has been conceived in this study. The choice of a collaborative or participatory methodological framework is advised to better align research questions and procedures to the specific needs and challenges of PSWs and other stakeholders concerned with PSW implementation. Patient and Public Contribution: The research team of the ImpPeer‐Psy5 study was collaboratively staffed by a portion of researchers who also identify as users or survivors of psychiatric services. A nonprofit organization for the training of PSWs served as a practice partner throughout the research process. Different participatory formats involve a significant number of diverse stakeholders relevant to PSW implementation. [ABSTRACT FROM AUTHOR]
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- 2024
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