165 results
Search Results
2. ASAM elaborates on its buprenorphine dosing paper.
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Knopf, Alison
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METHADONE treatment programs , *TREATMENT programs , *SUBSTANCE abuse , *SUBSTANCE abuse treatment , *BUPRENORPHINE , *MEDICAL protocols , *METHADONE hydrochloride , *ADULT education workshops - Abstract
Last week, ADAW featured a published paper recommending that higher doses of buprenorphine be used in the era of fentanyl (see "ASAM recommends higher doses if needed for treatment with buprenorphine," ADAW, Jan. 7, 2024, https://onlinelibrary.wiley.com/doi/full/10.1002/adaw.33984). The American Society of Addiction Medicine (ASAM) did not have time to get back to us by deadline but did respond to our questions for this week's issue. Below are our questions, in italics, followed by their responses. [ABSTRACT FROM AUTHOR]
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- 2024
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3. Patient and public involvement in the development of the digital tool MyBoT to support communication between young people with a chronic condition and care providers.
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van Schelven, Femke, van Weele, Mara, van der Meulen, Eline, Wessels, Elise, and Boeije, Hennie
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DIGITAL technology ,HUMAN services programs ,INTERPROFESSIONAL relations ,RESEARCH funding ,EVALUATION of human services programs ,QUESTIONNAIRES ,DECISION making ,DESCRIPTIVE statistics ,CHRONIC diseases ,PATIENT-centered care ,TELEMEDICINE ,COMMUNICATION ,PATIENT-professional relations ,ADULT education workshops ,PATIENT participation - Abstract
Introduction: To guide good practices in patient and public involvement (PPI), several calls have been made to share detailed accounts of practical experiences. We describe our collaboration with young people with a chronic condition (YPCC) in the development, testing and implementation of the digital communication tool MyBoT (Map your Burden of Treatment). Methods: MyBoT was developed by a team of academic researchers, some of whom were practising care providers, YPCC and designers. In addition to the two co‐researchers in the research team, various groups of YPCC were involved in decision‐making through participation in a design session, workshops and a dialogue session. The Involvement Matrix was used to reflect on the PPI of all YPCC. Results: Initially, the two co‐researchers were involved in the roles of informer and co‐thinker, but their decision‐making power within the study increased over time. In the final stages of the study, the co‐researchers and researchers became partners. The other YPCC who participated in the different sessions and workshops were co‐thinkers in all stages of the study. Conclusion: The PPI of two YPCCs as co‐researchers within the research team ensured continuous involvement, whereas the PPI of various groups of YPCCs guaranteed a representative and inclusive approach. Researchers play an essential role in bringing all perspectives together, integrating them within the technical and financial constraints and ultimately building a tool that is tailored to its users' needs. Patient or Public Contribution: YPCC played a significant role in the present study. Two YPCC—who are also co‐authors of this paper—were involved in all stages of this project as members of the research team. In addition, various YPCCs were involved in the development, testing and implementation stage of MyBoT by organizing design sessions, workshops and a dialogue session. [ABSTRACT FROM AUTHOR]
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- 2024
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4. CGIR Junior Scholar Consortium and Paper Development Workshop.
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CORPORATE governance ,ADULT education workshops ,RESEARCH & development - Abstract
The article offers information on the Corporate Governance: An International Review (CGIR) Junior Scholar Consortium and Paper Development Workshop at the Eighth International Corporate Governance Society (ICGS) Annual Conference, to be held at the University of Miami in Florida on November 11, 2022.
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- 2022
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5. Collaborative evaluation of a pilot involvement opportunity: Cochrane Common Mental Disorders Voice of Experience College.
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Knowles, Sarah, Morley, Karen, Foster, Rob, Middleton, Amy, Pinar, Semra, Rose, Fiona, Williams, Emma, Hendon, Jessica, and Churchill, Rachel
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PILOT projects ,PATIENT participation ,SYSTEMATIC reviews ,QUALITATIVE research ,COMMUNICATION ,EPIDEMICS ,RESOURCE allocation ,RESEARCH funding ,MENTAL illness ,LONGITUDINAL method ,ADULT education workshops - Abstract
Background: Involving consumers in systematic reviews can make them more valuable and help achieve goals around transparency. Systematic reviews are technically complex and training can be needed to enable consumers to engage with them fully. The Cochrane Common Mental Disorders group sought to engage people with lived experience of mental health problems in the Voice of Experience College, three workshops introducing them to systematic review methods and to opportunities to contribute as Cochrane consumers. We aimed to collectively evaluate the College from the perspective of both facilitators and consumers, to critically reflect on the experience, and to identify how the College could be sustained and spread to other review groups. Methods: This study was a longitudinal qualitative and collaborative evaluation, structured around normalisation process theory. Both facilitators and consumers were involved in not only providing their perspectives but also reflecting on these together to identify key learning points. Results: The workshops were positively evaluated as being engaging and supportive, largely due to the relational skills of the facilitators, and their willingness to engage in joint or two‐way learning. The College suffered from a lack of clarity over the role of consumers after the College itself, with a need for greater communication to check assumptions and clarify expectations. This was not achieved due to pandemic disruptions, which nevertheless demonstrated that resources for involvement were not prioritised as core business during this period. Conclusions: Soft skills around communication and support are crucial to effective consumer engagement. Sustaining involvement requires sustained communication and opportunities to reflect together on opportunities and challenges. This requires committed resources to ensure involvement activity is prioritised. This is critical as negative experiences later in the involvement journey can undermine originally positive experiences if contributors are unclear as to what their involvement can lead to. Open discussions about this are necessary to avoid conflicting assumptions. The spread of the approach to other review groups could be achieved by flexibly adapting to group‐specific resources and settings, but maintaining a core focus on collaborative relationships as the key mechanism of engagement. Patient and Public Contribution: Public contributors were collaborators throughout the evaluation process and have co‐authored the paper. [ABSTRACT FROM AUTHOR]
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- 2023
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6. The effect of learning strategies adopted in K12 schools on student learning in massive open online courses.
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Tang, Shan, Lei, Chi‐Un, and Wei, Hong Qiang
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HIGH schools , *SCALE analysis (Psychology) , *HEALTH insurance reimbursement , *STATISTICAL hypothesis testing , *FOCUS groups , *HUMAN services programs , *EDUCATIONAL outcomes , *MASSIVE open online courses , *INTERVIEWING , *FISHER exact test , *POSITIVE psychology , *QUESTIONNAIRES , *MENTORING , *DESCRIPTIVE statistics , *THEMATIC analysis , *PRE-tests & post-tests , *ONLINE education , *ADULT education workshops , *RESEARCH methodology , *LEARNING strategies , *SOCIAL support , *DATA analysis software , *COMPARATIVE studies - Abstract
Background: Given students' lack of self‐directed learning skills and the growing concern about implementing massive online open courses (MOOCs) in K12 education, learning strategies are needed to facilitate MOOC learning. Many studies have provided different strategies for effective learning in MOOCs. However, there is still limited research to confirm whether these strategies effectively support MOOC learning when deployed by secondary schools, which are not MOOC developers. Objectives: This mixed‐method study examines the provision of different learning strategies, including a learning guide, an academic mentoring programme, a training workshop, and a reimbursement scheme, and investigates the impact of these strategies on student learning in MOOCs. Methods: The study uses two data sources: (1) surveys with 40 participants and (2) semi‐structured interviews with 12 participants. The quantitative data were analysed with descriptive statistics and Fisher's exact test, and the qualitative data were analysed with thematic analysis. Results and Conclusion: The findings indicate that MOOC learners had positive attitudes towards the overall school support, with mentoring enjoying great popularity amongst the students. In terms of the effectiveness of the school support, the mentoring programme and reimbursement scheme were more effective than the university training and learning guide. The paper discusses the implications for researchers and educators. Lay Description: What is already known about this topic: There are a large number of K12 MOOC implementations, which are (i) STEM‐related and computer science courses, and (ii) from Europe and the USA.Limited studies provided different learning strategies for MOOC learning from the perspective of K12 schools, which are not MOOC developers.There is a need to explore MOOC initiatives encompassing a wide variety of subjects, including computer science MOOCs and non‐computer science MOOCs, in regions beyond Europe and the USA.There is also a need for further scrutiny of the effectiveness of learning strategies provided by the K12 school. What this paper adds: Our study launched the first MOOC implementation in K12, encompassing several subject areas beyond computer science in the region of Asia.Our study provided different learning strategies adopted by the K12 school, and the analysis revealed that MOOC learners took positive attitudes towards overall school support with mentoring enjoying great popularity with these students.Our study examined the effectiveness of school support and identified that mentoring and reimbursement are more effective than university training and the learning guide. Implications for practitioners: The insights gained from the study enable other K12 schools and educators to implement MOOC into existing school infrastructures successfully.These strategies provided in the MOOC implementation program can be helpful in many different online learning contexts. [ABSTRACT FROM AUTHOR]
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- 2024
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7. Establishing a standing patient advisory board in family practice research: A qualitative evaluation from patients' and researchers' perspectives.
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Engler, Jennifer, Engler, Fabian, Gerber, Meike, Brosse, Franziska, Voigt, Karen, and Mergenthal, Karola
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POLICY sciences ,FAMILY medicine ,SELF-efficacy ,QUALITATIVE research ,MEETINGS ,QUESTIONNAIRES ,THEMATIC analysis ,MEDICAL research ,ATTITUDES of medical personnel ,ADULT education workshops ,TRUST ,STAKEHOLDER analysis ,PATIENT participation ,PATIENTS' attitudes - Abstract
Introduction: Patient and public involvement is vital for high‐quality research. Integrating patients' and providers' perspectives early in research enhances the feasibility and relevance of study results. Within our family practice‐based research network ForN, we established a standing patient advisory board (PAB) to include patients with diverse conditions and experiences. In this paper, we aim to describe the establishment and functioning of a standing PAB in family medicine research from patients' and researchers' perspectives. Methods: After each PAB meeting, patients and researchers were asked to name anonymously positive and challenging moments in a feedback form with open questions. Researchers were also asked to reflect on how they implemented the discussion content in their research projects. The responses from both groups were transferred to MAXQDA 2018 and analyzed separately using thematic analysis. Results: We analyzed 40 feedback forms from patients and 14 feedback forms from researchers. The dominant theme in the patients' feedback was 'exchange': They positively emphasized the 'exciting and open discussions' and the exchange of perspectives with one another and researchers. The clarity of the researchers' presentations and the research topics were appreciated. Researchers also positively highlighted the open atmosphere of the discussions. Presenting their research to the PAB helped most researchers reflect on their research topics from patients' perspectives and implement changes. However, researchers also mentioned several barriers to the implementation of PAB members' feedback. Conclusion: The establishment of a standing PAB in family practice research is feasible and productive both from patients' and researchers' perspectives. Patient or Public Contribution: This study reports the evaluation of the establishment of a standing PAB in family practice research. Board members are involved in the design of studies, the co‐production of interventions and information material, and the interpretation of data. [ABSTRACT FROM AUTHOR]
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- 2024
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8. Conceptualising community engagement as an infinite game implemented through finite games of 'research', 'community organising' and 'knowledge mobilisation'.
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Turin, Tanvir C., Kazi, Mashrur, Rumana, Nahid, Lasker, Mohammad A. A., and Chowdhury, Nashit
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HEALTH policy ,PUBLISHING ,STRATEGIC planning ,PATIENT advocacy ,TEACHING methods ,HEALTH services accessibility ,DIGITAL divide ,COMMUNITY support ,COMMUNITY health services ,HUMAN services programs ,HEALTH literacy ,SELF-efficacy ,COURAGE ,LEARNING strategies ,PRIMARY health care ,INTERPROFESSIONAL relations ,PHILOSOPHY of medicine ,HEALTH ,NEEDS assessment ,MEDICAL research ,TRUST ,AUTHORSHIP ,ADULT education workshops - Abstract
Meaningful community engagement process involves focusing on the community needs, building community capacity and employing culturally tailored and community‐specific strategies. In the current practices of community‐engaged health and wellness research, generally, community engagement activities commence with the beginning of a particular research project on a specific topic and end with the completion of the project. The outcomes of the community engagement, including the trust, partnership and contribution of the community to research, thus remain limited to that specific project and are not generally transferred and fostered further to the following project on a different topic. In this viewpoint article, we discussed a philosophical approach to community engagement that proposes to juxtapose community engagement for the specific short‐term research project and the overarching long‐term programme of research with the finite game and infinite game concepts, respectively. A finite game is a concept of a game where the players are known, rules are fixed and when the agreed‐upon goal is achieved, the game ends. On the other hand, in infinite games, the players may be both known and unknown, have no externally fixed rules and have the objective of continuing the game beyond a particular research project. We believe community engagement needs to be conducted as an infinite game that is, at the programme of research level, where the goal of the respective activities is not to complete a research project but to successfully engage the community itself is the goal. While conducting various research projects, that is, finite games, the researchers need to keep an infinite game mindset throughout, which includes working with the community for a just cause, building trust and community capacity to maximise their contribution to research, prioritising community needs and having the courage to lead the community if need be. Patient or Public Contribution: While preparing this manuscript, we have partnered actively with community champions, activists, community scholars and citizen researchers at the community level from the very beginning. We had regular interactions with them to get their valuable and insightful inputs in shaping our reflections. Their involvement as coauthors in this paper also provided a learning opportunity for them and facilitated them to gain insight on knowledge engagement. All authors support greater community/citizen/public involvement in research in an equitable manner. [ABSTRACT FROM AUTHOR]
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- 2023
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9. Ritual and university education: Systemic coexistence after COVID‐19.
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Córdoba‐Pachón, José‐Rodrigo
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UNIVERSITIES & colleges ,SYSTEMS theory ,EDUCATIONAL technology ,RITES & ceremonies ,ONLINE education ,ADULT education workshops ,MASTERS programs (Higher education) ,COVID-19 pandemic - Abstract
This paper explores the realm of university education after COVID‐19, in which there is a perceived need to manage the 'old' and the 'new'. The paper brings two different systems approaches to that end: the systems theory of autopoiesis and the systems identity technology of profilicity. In their own way, both explain the phenomena of 'blindness' to social situations, potentially enabling meaningful conversations to occur. However, they require a broader, common ground so that they could also coexist with each other. This could lead us to consider the inclusion of rituals in education. Two perspectives about ritual are brought forth to start developing such common ground. With these, the paper proposes a number of questions and implications to further develop systemic coexistence. [ABSTRACT FROM AUTHOR]
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- 2024
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10. Shaping research for people living with co‐existing mental and physical health conditions: A research priority setting initiative from the United Kingdom.
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Taylor, Olivia, Newbronner, Elizabeth, Cooke, Helen, Walker, Lauren, and Wadman, Ruth
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PSYCHOTHERAPY patients ,INTERPROFESSIONAL relations ,RESEARCH funding ,HEALTH status indicators ,MENTAL health services ,MEETINGS ,SELF-management (Psychology) ,RESEARCH evaluation ,MENTAL illness ,LIFE expectancy ,FAMILIES ,CAREGIVERS ,EXPERIENCE ,SURVEYS ,THEMATIC analysis ,PRIORITY (Philosophy) ,ADULT education workshops ,VIDEOCONFERENCING ,NEEDS assessment ,HEALTH equity ,DATA analysis software ,COMORBIDITY ,FRIENDSHIP ,PSYCHOSOCIAL factors ,GROUP process - Abstract
Introduction: Those with severe and enduring mental ill health are at greater risk of long‐term physical health conditions and have a reduced life expectancy as a result. Multiple factors compound this health inequality, and the need for setting research priorities in this area is highlighted with physical and mental healthcare services being separate, and limited multimorbidity research. Methods: The aim of this exercise was to work in partnership with healthcare professionals and carers, family, friends and individuals with lived experience of both mental and physical health conditions, to set research priorities to help people with mental health conditions to look after their physical health. The exercise was guided by the James Lind Alliance approach. For this, a steering group was set up, two surveys were completed and a final priority workshop was conducted. Results: This priority setting exercise guided by people's needs and lived experience has produced a set of well‐defined research topics. Initially, 555 research questions were suggested in the first survey, which were refined to 54 questions for the second survey. A priority setting workshop was then conducted to get the final 10 priorities. Conclusions: Taking these topics forward to improve services and treatment for both mental and physical ill health may in turn improve physical health and lessen the reduced life expectancy of those living with mental ill health. Patient or Public Contribution: This work was completed in collaboration with people who have lived experience of mental ill health and physical health conditions, as well as carers, family and friends. Their contribution has been significant for this work from piloting surveys, amending language used and educating the researchers and contributing to this paper. The initial work was completed with a steering group and continued with surveys and workshops. [ABSTRACT FROM AUTHOR]
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- 2024
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11. Fifteen years of shared care for paediatric oncology, haematology and palliative patients across Queensland: The role of Regional Case Managers.
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Slater, Penelope, Hastings, Yvonne, Nicholson, Jessica, Noyes, Michelle, Benitez, Lori, Pollock, Kobi, Peacock, Rinnah, Cox, Anita, Gunning, Robbie, Caris, Karen, Petersen, Denise, Henry, Catherine, Spanner, Rachael, Beckett, Karen, and Chisholm, Candace
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HOSPITAL shared services ,OCCUPATIONAL roles ,FOCUS groups ,HEMATOLOGY ,TERMINALLY ill ,LEADERSHIP ,INTERVIEWING ,EXPERIENCE ,TUMORS in children ,CONTINUUM of care ,MEDICAL protocols ,FAMILY-centered care ,RESEARCH funding ,MEDICAL case management ,THEMATIC analysis ,CONTINUING education of nurses ,ADULT education workshops - Abstract
Objective: A shared care model was implemented in 2006 in Queensland to facilitate paediatric oncology, haematology and palliative care patients receiving care as close to home as possible. Following initial diagnosis, care planning and treatment at the tertiary children's hospital, appropriate local care was coordinated by Regional Case Managers (RCMs) established at each of 10 Shared Care Units (SCUs). This enabled safe and quality regional care supported by a statewide network providing clinical governance and education. This paper examines learnings from 15 years of this shared care. Setting: Ten hospitals throughout Queensland facilitated a statewide model of shared care for paediatric oncology, haematology and palliative care patients, supported by a tertiary hub in Brisbane. Participants: Regional Case Managers in Shared Care Units and their supporting staff. Design Staff from SCUs were surveyed and focus group interviews conducted. Results: The paper reviews the attributes, knowledge and experience required for RCMs. Standards of care were supported through education workshops, clinical placements, chemotherapy credentialing, guidelines and standards. RCMs facilitated communication and information sharing with the tertiary centre, advocated for their cohort of patients locally and streamlined and supported the family's experience of care. Conclusion: The RCM role provided invaluable clinical leadership for the care of paediatric oncology, haematology and palliative patients across Queensland. As new treatments evolve, the expertise and coordination provided by the RCMs will be even more critical. Achieving high‐quality shared care outcomes is underpinned by the RCMs drive to achieve statewide safety and support for this cohort of children. [ABSTRACT FROM AUTHOR]
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- 2023
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12. Developing visual tangible artefacts as an inclusive method for exploring digital activities with young people with learning disabilities.
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Weber, Ditte Lystbæk, Brereton, Margot, and Kanstrup, Anne Marie
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DIGITAL technology ,INTERVIEWING ,HUMAN services programs ,DIARY (Literary form) ,VISUAL perception ,COMMUNICATION ,DESCRIPTIVE statistics ,MEDICAL artifacts ,INTELLECTUAL disabilities ,ADULT education workshops - Abstract
Background: Young people with learning disabilities use many digital technologies to undertake meaningful and social activities in their everyday lives. Understanding these digital activities is essential for supporting their digital participation. Including them in exploring their digital activities can be challenging with conventional qualitative research methods, because digital activities are a complex and abstract topic to discuss, particularly for people with learning disabilities. In this paper, we present the rationale for developing and using visual tangible artefacts (VTAs) to include young people with learning disabilities in exploring their digital activities. Methods: We devised a suite of VTAs to engage young people (aged 14–27 years) with learning disabilities in exploring their digital activities via interviews, diaries, and workshops. The VTAs comprised Talking Mats (TMs), probing with technology, digital snapshots and inspiration cards. Findings: Our significant methodological findings were that VTAs are useful for exploring digital activities with young people with learning disabilities. TMs and probing with technology can engage participants to map, recall and explain their digital activities. Digital snapshots are valuable for validating findings with participants, and inspiration cards aid perspectives about digital aims. Although communication and abstract representations can be challenging for people with learning disabilities, VTAs that combine familiar, simple, intuitive, individualised, rewarding elements and collaboration with participants proved valuable for exploring their digital activities. Conclusion: We concluded that VTAs are inclusive tools for exploring the digital activities of and with young people with learning disabilities. The VTAs allowed access to conversations, information and insights that are not obtainable otherwise. As such, the VTAs may be regarded as a new model for inclusive research in the field of disability and technology studies. Accessible summary: Digital technologies are widely used by young people with learning disabilities to talk to their friends and family, meet new friends and entertain themselves.These digital activities are complex and can be difficult to talk about.We developed methods to support conversations about digital activities with young people with learning disabilities.The paper gives examples of how the methods are used, why they are necessary and how they promote discussion of digital activities. [ABSTRACT FROM AUTHOR]
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- 2023
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13. Antonia's story: Bringing the past into the future.
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Barden, Owen, Walden, Steven J., Bennett, Davey, Bird, Nicole, Cairns, Stella, Currie, Rhiannon, Evans, Lynne, Jackson, Stephen, Oldnall, Emily, Oldnall, Sarah, Price, Dawn, Robinson, Tricia, Tahir, Amber, Taylor, Samantha, Wright, Christine, and Wright, Claire
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THOUGHT & thinking ,PSYCHOTHERAPY patients ,DEHUMANIZATION ,CONFIDENCE ,RESEARCH methodology ,DISCRIMINATION (Sociology) ,CREATIVE ability ,EXPERIENCE ,ABILITY ,TRAINING ,PSYCHOSOCIAL factors ,ACTION research ,INTERPERSONAL relations ,PEOPLE with intellectual disabilities ,ARCHIVES ,ADULT education workshops ,EVALUATION - Abstract
Background: This paper reports on a participatory project on the history of learning disability. The paper makes contributions to discourses on using participatory research methods with people labelled with learning disabilities, on the nature of research impact in participatory research, and on the lived experience of learning disability today. Methods: We used a two‐step methodology. The first step involved searching for and selecting archive material relating to the history of learning disability. The second step involved a series of participatory workshops. We worked collectively to systematically analyse the case history of Antonia Grandoni. Then we responded to it in a variety of creative ways. In doing so, we made connections between Antonia's life and our own. Findings: Many of Antonia's experiences seem very similar to what people labelled with learning disabilities often encounter today. These include discrimination, segregation and dehumanisation. Despite this, we very much enjoyed doing the research. As well as finding out about the history, some of us learned new skills, some of us grew in confidence, and we also made new friends. Conclusions: Participatory methods are an effective way of making digital archive material more accessible to people labelled with learning disabilities. In this project, using participatory methods revealed a lot of parallels between how we think somebody experienced learning disability in the mid‐19th century, and how it is experienced today. They also resulted in significant impact on the people doing the research. Accessible summary: This is a paper about how we researched learning disability history together.We used material in a digital archive as well as creative methods to do our research.Working this way helped us learn about ourselves, and each other's experiences of learning disability, whilst we learned about the history.This is important because people with learning disabilities have not often been able to do historical research.Research like this matters because doing it teaches us useful skills and can be empowering. [ABSTRACT FROM AUTHOR]
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- 2022
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14. A qualitative evaluation of a co‐design process involving young people at risk of suicide.
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Kehoe, Michelle, Whitehead, Rick, de Boer, Kathleen, Meyer, Denny, Hopkins, Liza, and Nedeljkovic, Maja
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EVALUATION of human services programs ,SUICIDE prevention ,SUICIDE risk factors ,PATIENT participation ,STAKEHOLDER analysis ,ATTITUDES of medical personnel ,RESEARCH methodology ,TIME ,INTERVIEWING ,PATIENT-centered care ,PATIENTS' attitudes ,FAMILY attitudes ,QUALITATIVE research ,RESEARCH funding ,THEMATIC analysis ,MENTAL health services ,POWER (Social sciences) ,ADULT education workshops ,ADOLESCENCE - Abstract
Background: Co‐design is becoming common practice in the development of mental health services, however, little is known about the experience of such practices, particularly when young people are involved. Objective: The aim of this study was to conduct a process evaluation of the co‐design which was undertaken for the development of an intervention for youth and adolescents at risk of suicide. This paper briefly outlines the co‐design process undertaken during a COVID‐19 lockdown and then focuses on a qualitative evaluation of the experience of taking part in a co‐design process. Setting and Participants: The evaluation involved young consumers of a public youth mental health service, their carers/parents and service delivery staff who had taken part in the co‐design process. Method: This study used follow‐up semistructured interviews with the co‐design participants to explore their experience of the co‐design process. Inductive thematic analysis was used to draw out common themes from the qualitative data. Results: It was found that despite the practical efforts of the project team to minimise known issues in co‐design, challenges centred around perceptions regarding power imbalance, the need for extensive consultation and time constraints still arose. Discussion: Despite these challenges, the study found that the co‐design provided a human‐centred, accessible and rewarding process for young people, parents and staff members, leaving them with the feeling that they had made a worthwhile contribution to the design of the new service, as well as contributing to changing practice in service design. Conclusion: With sensitivity and adaptation to usual practice, it is possible to include young people with suicidal ideation, their parents/carers and professional staff in a safe and effective co‐design process. Patient and Public Contribution: The authors would like to thank and acknowledge the young people with a lived experience and their carers who participated in the co‐design process and research evaluation component of this study. We also wish to thank the clinical staff, peer workers and family peer workers who participated in this research. [ABSTRACT FROM AUTHOR]
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- 2024
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15. Older adults' needs and preferences for a nutrition education digital health solution: A participatory design study.
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Turner, Ashlee, Flood, Victoria M., and LaMonica, Haley M.
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HEALTH education ,PILOT projects ,PATIENT participation ,MEDICAL care for older people ,FOOD consumption ,DIGITAL health ,SMARTPHONES ,NUTRITION education ,QUALITATIVE research ,PATIENTS' attitudes ,EXPERIENCE ,COMPARATIVE studies ,QUESTIONNAIRES ,AGING ,COST effectiveness ,DESCRIPTIVE statistics ,NEEDS assessment ,THEMATIC analysis ,TECHNOLOGY ,DATA analysis software ,HEALTH promotion ,DIETARY patterns ,ADULT education workshops ,WORLD Wide Web ,OLD age - Abstract
Background: The global population is ageing rapidly and there is a need for strategies to promote health and wellbeing among older adults. Nutrition knowledge is a key predictor of dietary intake; therefore, effective educational programmes are urgently required to rectify poor dietary patterns. Digital health technologies provide a viable option for delivering nutrition education that is cost‐effective and widely accessible. However, few technologies have been developed to meet the unique needs and preferences of older adults. Objective: The aim of this study was to explore technology use among older adults and qualitatively determine the content needs and design preferences for an online nutrition education resource tailored to older adult consumers in Australia. Methods: Twenty adult participants aged 55 years and older (95% female) participated in one of four 2‐h participatory design workshops. In each workshop, prompted discussion questions were used to explore participants' technology use and preferences and to explore content needs and design preferences for an online nutrition education resource specific to older adults. Results: All participants were regularly using a range of different devices (e.g., smartphones, tablets and computers) and reported being comfortable doing so. Participants wanted a website that provided general nutrition information, practical advice and recipes. To enhance engagement, they sought a personalised resource that could be adjusted to suit their needs, included up‐to‐date information and allowed for easy sharing with others by exporting information as a PDF. Conclusions: Participatory design methods generate new knowledge for designing and tailoring digital health technologies to be appropriate and useful for the target audience. Specifically, older adults seek an online resource that has large and simple fonts with clear categories, providing them with practical advice and general nutrition information that can be personalised to suit their own needs and health concerns, with the option to export and print information into a paper‐based format. Patient or Public Contribution: Older adults actively participated in the development and evaluation process to generate ideas about potential features, functionalities, uses and practicalities of an online nutrition education resource. [ABSTRACT FROM AUTHOR]
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- 2024
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16. Development of a decision‐support framework to support professionals and promote comfort among older hospital inpatients living with dementia.
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Davies, Nathan, West, Emily, Smith, Ellen M., Vickerstaff, Victoria, Manthorpe, Jill, Shah, Malvi, Rait, Greta, Wilcock, Jane, Ward, Jane, and Sampson, Elizabeth L.
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HOSPITALS ,CLINICAL decision support systems ,INTERVIEWING ,MEDICAL personnel ,DEMENTIA patients ,DEMENTIA ,HOSPITAL care ,RESEARCH funding ,PSYCHOSOCIAL factors ,PSYCHOLOGY of caregivers ,PATIENT care ,LONGITUDINAL method ,ADULT education workshops ,OLD age - Abstract
Background: Acute hospital wards can be difficult places for many people living with dementia. Promoting comfort and wellbeing can be challenging in this environment. There is little evidence‐based support for professionals working on acute care wards on how to respond to distress and maximise comfort and wellbeing among patients living with dementia. Objectives: Our overall aim was to codesign an evidence‐based easy‐to‐use heuristic decision‐support framework, which was acceptable and practical but acknowledges the complex and acute nature of caring for patients with dementia in the hospital. This paper presents the development process and resulting framework. Methods: A codesign study was informed by data from (1) a literature review of the care and management of people living with dementia in acute hospitals; (2) a cohort study of comfort and discomfort in people with dementia in acute hospitals; and (3) interviews with family carers and health care professionals. We synthesised evidence from these data sources and presented to key stakeholders through codesign meetings and workshops to produce our decision‐support framework. Results: The framework consists of a series of flowcharts and operates using a three‐stage process of: (1) assess comfort/discomfort; (2) consider causes of discomfort; and (3) address patient needs to manage the discomfort. Conclusion: Working with key stakeholders, synthesising diverse quantitative and qualitative evidence to build a clinical framework is a feasible approach to help address the needs of patients living with dementia in an acute hospital setting. The result is a framework which is now ready for evaluation and implementation. Patient and Public Contribution: We worked closely with people living with dementia and family carers throughout this study, including the development of the study protocol with input on study development and design, through to inclusion in stakeholder workshops and codesign of the decision support framework. [ABSTRACT FROM AUTHOR]
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- 2024
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17. Unlocking the restraint—Development of a behaviour change intervention to increase the provision of modified constraint‐induced movement therapy in stroke rehabilitation.
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Weerakkody, Ashan, Emmanuel, Robyn, White, Jocelyn, Godecke, Erin, and Singer, Barby
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CONSTRAINT-induced movement therapy , *PHYSICAL therapy , *ARM , *HUMAN services programs , *CONCEPTUAL structures , *OCCUPATIONAL therapy , *MEDICAL protocols , *STROKE rehabilitation , *QUESTIONNAIRES , *COMMUNICATION , *BEHAVIOR modification , *ADULT education workshops - Abstract
Background: Strong evidence supports the provision of modified constraint‐induced movement therapy (mCIMT) to improve upper limb function after stroke. A service audit identified that very few patients received mCIMT in a large subacute, early‐supported discharge rehabilitation service. A behaviour change intervention was developed to increase the provision of mCIMT following an unsuccessful 'education only' attempt. This paper aims to systematically document the steps undertaken and to provide practical guidance to clinicians and rehabilitation services to implement this complex, yet effective, rehabilitation intervention. Methods: This clinician behaviour change intervention was developed over five stages and led by a working group of neurological experts (n = 3). Data collection methods included informal discussions with clinicians and an online survey (n = 35). The staged process included reflection on why the first attempt did not improve the provision of mCIMT (stage 1), mapping barriers and enablers to the Theoretical Domains Framework (TDF) and behaviour change wheel (BCW) to guide the behaviour change techniques (stages 2 and 3), developing a suitable mCIMT protocol (stage 4), and delivering the behaviour change intervention (stage 5). Results: Reflection among the working group identified the need for upskilling in mCIMT delivery and the use of a behaviour change framework to guide the implementation program. Key determinants of behaviour change operated within the TDF domains of knowledge, skills, environmental context and resources, social role and identity, and social influences. Following the development of a context‐specific mCIMT protocol, the BCW guided the behaviour change intervention, which included education, training, persuasion, environmental restructuring, and modelling. Conclusion: This paper provides an example of using the TDF and BCW to support the implementation of mCIMT in a large early‐supported discharge service. It outlines the suite of behaviour change techniques used to influence clinician behaviour. The success of this behaviour change intervention will be explored in future research. [ABSTRACT FROM AUTHOR]
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- 2023
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18. Who cares for the carer? Codesigning a carer health and wellbeing clinic for older care partners of older people in Australia.
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Layton, Natasha, Lalor, Aislinn, Slatyer, Susan, Lee, Den‐Ching A, Bryant, Christina, Watson, Moira, Khushu, Anjali, Burton, Elissa, Oliveira, Déborah, Brusco, Natasha L., Jacinto, Alessandro, Tiller, Elizabeth, and Hill, Keith D.
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CAREGIVER attitudes ,EXPERIMENTAL design ,MEETINGS ,SOCIAL support ,FOCUS groups ,ATTITUDES of medical personnel ,ATTITUDE (Psychology) ,TELEPHONES ,MEDICAL care ,EXECUTIVES ,HEALTH status indicators ,VIDEOCONFERENCING ,CLINICS ,INTERVIEWING ,LANGUAGE & languages ,QUALITATIVE research ,EXPERIENCE ,SURVEYS ,TREATMENT effectiveness ,INTERPROFESSIONAL relations ,PSYCHOLOGY of caregivers ,HEALTH ,AGING ,RESEARCH funding ,NEEDS assessment ,JUDGMENT sampling ,POLICY sciences ,DATA analysis software ,ADULT education workshops ,EMAIL - Abstract
Introduction: Older carers or 'care partners' of older people experiencing care needs often provide essential support, at times while neglecting their own health and well‐being. This is an increasingly frequent scenario due to both demographic changes and policy shifts towards ageing in place. Multiple community stakeholders within the care and support ecosystem hold valuable expertise about the needs of older care partners, and the programme and policy responses that may better support their health and well‐being. The aim of this study was to identify the perspectives of stakeholders obtained through the codesign phase of a multicomponent research project investigating new models of care and support for older care partners suitable for the Australian context. Methods: Principles of codesign were used to engage a purposeful sample of older care partners, health professionals, researchers, policy makers and health service administrators. Participants took part in a series of three codesign workshops conducted remotely via video conferencing. The workshops were supported with briefing material and generated consensus‐based summaries, arriving at a preferred service model. Findings: This paper reports the research design and structure of the codesign panels, the range of findings identified as important to support the health and well‐being of older carers of older people, and the resulting service model principles. The codesigned and preferred model of care is currently being prepared for implementation and evaluation in Australia. Public Contribution: This study was conducted using codesign methodology, whereby stakeholders including older care partners and others involved in supporting older carers, were integrally involved with design, development, results and conclusions. [ABSTRACT FROM AUTHOR]
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- 2023
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19. Acute post‐stroke aphasia management: An implementation science study protocol using a behavioural approach to support practice change.
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Clapham, Renee P., McKinley, Kathryn, Stone, Marissa, Candy, Mary‐Anne, Candy, Phil, Carragher, Marcella, and O'Halloran, Robyn
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AUDITING ,STROKE ,RESEARCH methodology ,BEHAVIOR therapy ,HEALTH outcome assessment ,APHASIA ,CRITICAL care medicine ,STROKE patients ,INTERPROFESSIONAL relations ,INTELLECT ,TRANSLATIONS ,ADULT education workshops ,DISEASE complications - Abstract
Background: Evidence should guide decisions in aphasia practice across the continuum of stroke care; however, evidence–practice gaps persist. This is particularly pertinent in the acute setting where 30% of people with stroke will have aphasia, and speech pathologists experience many challenges implementing evidence‐based practice. This has important consequences for people with aphasia and their close others, as well as speech pathologists working in acute settings. Aims: This study protocol details how we will target practice change using a behavioural approach, with the aim of promoting the uptake of synthesized evidence in aphasia management post‐stroke in the acute hospital setting. Methods & Procedures: We will conduct a mixed‐methods before‐and‐after study following the Knowledge‐to‐Action (KTA) framework. Researchers, speech pathologists and people with lived experience of aphasia will collaborate to identify and prioritize practice gaps, and develop and implement changes to clinical practice based on the Theoretical Domains Framework and Behaviour Change Wheel. Discussion: This study may provide a template for acute stroke services in how to use an implementation science approach to promote the application of synthesized evidence into routine clinical practice to ensure people with aphasia receive high‐quality services. Collaboration among researchers, healthcare providers, people with aphasia and their close others ensures that the identification and targeting of practice gaps are driven by theory, lived experience and the local context. WHAT THIS PAPER ADDS: What is already known on this subject: Synthesized evidence, such as clinical guidelines and consensus statements, provides the highest level of evidence to inform clinical practice, yet discrepancies between delivered care and evidence remain. This discrepancy is of note in the acute setting where clinicians report many challenges implementing the best available evidence, combined with a high proportion of people with stroke who will have aphasia (30%). There are many reasons why evidence is not put into practice, and efforts to change clinical practice need to consider these barriers when developing interventions. What this paper adds to existing knowledge: This study protocol details an implementation science approach to affect clinical practice change, informed by a collaboration of key stakeholders (researchers, speech pathologists, and people with aphasia and their close others). Protocol papers that focus on bridging the gap between evidence and practice are uncommon in communication disorders; moreover, explicit prioritization of practice gaps is a critical but often overlooked aspect of promoting evidence‐based practice. What are the potential or actual clinical implications of this work?: This protocol provides insights into how one study site identified and prioritized evidence–practice gaps using a participatory approach. We provide insights into how clinical practice change may occur by describing how we plan to identify priority evidence–practice gaps and develop an intervention to improve the use of aphasia evidence in routine practice. This protocol aims to share an implementation science approach to service improvement that may be replicated across other services. [ABSTRACT FROM AUTHOR]
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- 2023
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20. Nothing about us without us: A co‐production strategy for communities, researchers and stakeholders to identify ways of improving health and reducing inequalities.
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Albert, Alexandra, Islam, Shahid, Haklay, Muki, and McEachan, Rosemary R. C.
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DIVERSITY & inclusion policies ,STRATEGIC planning ,FOCUS groups ,INTERVIEWING ,PREVENTIVE health services ,HUMAN services programs ,EXPERIENCE ,CHILDREN'S health ,RESEARCH funding ,STATISTICAL sampling ,THEMATIC analysis ,MEDICAL research ,HEALTH promotion ,ADULT education workshops - Abstract
Introduction: Co‐production with communities is increasingly seen as best practice that can improve the quality, relevance and effectiveness of research and service delivery. Despite this promising position, there remains uncertainty around definitions of co‐production and how to operationalize it. The current paper describes the development of a co‐production strategy to guide the work of the ActEarly multistakeholder preventative research programme to improve children's health in Bradford and Tower Hamlets, UK. Methods: The strategy used Appreciative Inquiry (AI), an approach following a five‐step iterative process: to define (Step 1) scope and guide progress; to discover (Step 2) key issues through seven focus groups (N = 36) and eight in‐depth interviews with key stakeholders representing community groups, and the voluntary and statutory sectors; to dream (Step 3) best practice through two workshops with AI participants to review findings; to design (Step 4) a co‐production strategy building on AI findings and to deliver (Step 5) the practical guidance in the strategy. Results: Nine principles for how to do co‐production well were identified: power should be shared; embrace a wide range of perspectives and skills; respect and value the lived experience; benefits should be for all involved parties; go to communities and do not expect them to come to you; work flexibly; avoid jargon and ensure availability of the right information; relationships should be built for the long‐term; co‐production activities should be adequately resourced. These principles were based on three underlying values of equality, reciprocity and agency. Conclusion: The empirical insights of the paper highlight the crucial importance of adequate resources and infrastructure to deliver effective co‐production. This documentation of one approach to operationalizing co‐production serves to avert any misappropriations of the term 'co‐production' by listening to service users, stakeholders and other relevant groups, to develop trust and long‐term relationships, and build on the learning that already exists amongst such groups. Patient or Public Contribution: The work was overseen by a steering group (N = 17) of individuals, both professional and members of the public with experience in undertaking co‐production, and/or with some knowledge of the context of the two ActEarly field sites, who provided regular oversight and feedback on the AI process. [ABSTRACT FROM AUTHOR]
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- 2023
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21. Guiding, sustaining and growing the public involvement of young people in an adolescent health research community of practice.
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Swist, Teresa, Collin, Philippa, Nguyen, Betty, Davies, Cristyn, Cullen, Patricia, Medlow, Sharon, Skinner, S. Rachel, Third, Amanda, and Steinbeck, Katharine
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PATIENT participation ,DISCUSSION ,COMMUNITY health services ,ADOLESCENT health ,MEDICAL care research ,CONCEPTUAL structures ,INTERPROFESSIONAL relations ,ACTION research ,RESEARCH funding ,JUDGMENT sampling ,ADULT education workshops - Abstract
Background: Public involvement in health research and its translation is well recognized to improve health interventions. However, this approach is insufficiently practised and evidenced in relation to young people. This paper presents an analysis of the process of co‐producing a framework, partnership model and a growing network of young people informing and guiding an adolescent health research community of practice. Methods: A Living Lab is a participatory research approach that brings together a broad range of stakeholders in iterative cycles of research, design, development, pilot‐testing, evaluation and delivery to implement effective responses to complex phenomena. The geographical setting for this study was Sydney, NSW, Australia, and involved both youth and adult stakeholders from this region. The study spanned three phases between July 2018 and January 2021, and data collection included a range of workshops, a roundtable discussion and an online survey. Results: The co‐production process resulted in three key outputs: first, an engagement framework to guide youth participation in health research; second, a partnership model to sustain youth and adult stakeholder collaboration; third, the growth of the public involvement of young people with a range of projects and partners. Conclusions: This study investigated the process of co‐producing knowledge with young people in an adolescent health community of practice. A reflexive process supported youth and adult stakeholders to collaboratively investigate, design and pilot‐test approaches that embed young people's engagement in adolescent health research. Shared values and iterative methods for co‐production can assist in advancing mutual learning, commitment and trust in specific adolescent health research contexts. Public Contribution: Young people guiding and informing an adolescent health research community of practice were involved in this study, and one of the participants is a paper co‐author. [ABSTRACT FROM AUTHOR]
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- 2022
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22. Developing a community facilitator‐led participatory learning and action women's group intervention to improve infant feeding, care and dental hygiene practices in South Asian infants: NEON programme.
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Manikam, Logan, Allaham, Shereen, Demel, Isabel‐Catherine, Bello, Ummi Aisha, Naman, Maryan, Heys, Michelle, Batura, Neha, Llewellyn, Clare, Hayward, Andrew, Lakshman, Rajalakshmi, Gilmour, Jenny, Webb Martin, Kelley, Irish, Carol, Edwards, Chanel, Archibong, Mfon, Clarkson, Corinne, Marsh, Mary, Delceta, Daley, Nutkins, Amanda, and Islam, Lily
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MEDICAL quality control ,MEETINGS ,PATIENT participation ,INFANT care ,WOMEN ,COMMUNITY health services ,SOUTH Asians ,INFANT nutrition ,HUMAN services programs ,CONCEPTUAL structures ,QUALITY assurance ,DESCRIPTIVE statistics ,DENTAL hygiene ,HEALTH planning ,ADULT education workshops ,BENGALI (South Asian people) - Abstract
Introduction: The Nurture Early for Optimal Nutrition (NEON) study is a multiphase project that aims to optimize feeding, care and dental hygiene practices in South Asian children <2 years in East London, United Kingdom. The multiphase project uses a participatory learning and action (PLA) approach facilitated by a multilingual community facilitator. In this paper, we elaborate on the process and results of the Intervention Development Phase in the context of the wider NEON programme. Methods: Qualitative community‐based participatory intervention codevelopment and adaptation. Setting: Community centres in East London and online (Zoom) meetings and workshops. Participants: In total, 32 participants registered to participate in the Intervention Development Phase. Four Intervention Development workshops were held, attended by 25, 17, 20 and 20 participants, respectively. Results: Collaboratively, a culturally sensitive NEON intervention package was developed consisting of (1) PLA group facilitator manual, (2) picture cards detailing recommended and nonrecommended feeding, care and dental hygiene practices with facilitators/barriers to uptake as well as solutions to address these, (3) healthy infant cultural recipes, (4) participatory Community Asset Maps and (5) list of resources and services supporting infant feeding, care and dental hygiene practices. Conclusion: The Intervention Development Phase of the NEON programme demonstrates the value of a collaborative approach between researchers, community facilitators and the target population when developing public health interventions. We recommend that interventions to promote infant feeding, care and dental hygiene practices should be codeveloped with communities. Recognizing and taking into account both social and cultural norms may be of particular value for infants from ethnically diverse communities to develop interventions that are both effective in and accepted by these communities. Patient and Public Involvement and Engagement: Considerable efforts were placed on Patient/Participant and Public Involvement and Engagement. Five community facilitators were identified, each of which represented one ethnic/language group: (i) Bangladeshi/Bengali and Sylheti, (ii) Pakistani/Urdu, (iii) Indian/Gujrati, (iv) Indian/Punjabi and (v) Sri Lankan/Tamil. The community facilitators were engaged in every step of the study, from the initial drafting of the protocol and study design to the Intervention Development and refinement of the NEON toolkit, as well as the publication and dissemination of the study findings. More specifically, their role in the Intervention Development Phase of the NEON programme was to: 1.Support the development of the study protocol, information sheets and ethics application.2.Ensure any documents intended for community members are clear, appropriate and sensitively worded.3.Develop strategies to troubleshoot any logistical challenges of project delivery, for example, recruitment shortfalls.4.Contribute to the writing of academic papers, in particular reviewing and revising drafts.5.Develop plain language summaries and assist in dissemination activities, for example, updates on relevant websites.6.Contribute to the development of the NEON intervention toolkit and recruitment of the community members.7.Attend and contribute to Intervention Development workshops, ensuring the participant's voices were the focus of the discussion and workshop outcomes. [ABSTRACT FROM AUTHOR]
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- 2022
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23. Developing cross‐cultural competence of students through short‐term international mobility programme.
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Sylwia, Przytuła, Barzykowski, Krystian, Tracz‐Krupa, Katarzyna, Cassar, Vincent, and Said, Emanuel
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PERSONALITY questionnaires ,STUDENT mobility ,ADULT education workshops ,FLUENCY (Language learning) ,FOREIGN study ,UNIVERSITIES & colleges ,FOREIGN students - Abstract
In the era of higher education institutions' internationalisation, international student mobility is viewed as a crucial educational tool for enhancing the cross‐cultural competence of learners. This paper aims to present research findings on the development of cross‐cultural competence (skills, knowledge, and attitudes) among students participating in a short‐term international mobility programme. The study involved 45 students from five European universities located in Kosovo, the Czech Republic, Poland, Belgium, and Malta. We utilised three scales in our methodology: the Cross‐Cultural Adaptability Inventory, the Multicultural Personality Questionnaire, and the Intercultural Sensitivity Scale, along with data from a structured diary. Our findings indicate that students who took part in this programme expanded their knowledge through various trainings and workshops during each study visit abroad. Students not only gained new knowledge and specific skills (e.g., conflict management, negotiation skills), and behaviours (e.g., tolerance, openness, trust), but they also improved previously acquired competencies, such as professional and linguistic ones (English fluency). This study contributes to the scientific understanding of cross‐cultural competence development and may also be valuable in designing intercultural training and mobility programmes for students. [ABSTRACT FROM AUTHOR]
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- 2024
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24. Involving adolescents with intellectual disability in the adaptation of self‐reported subjective well‐being measures: participatory research and methodological considerations.
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Davison, J., Maguire, S., McLaughlin, M., and Simms, V.
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WELL-being ,SELF-evaluation ,ACTION research ,SCHOOLS ,DESCRIPTIVE statistics ,COMMUNICATION ,SCALE analysis (Psychology) ,PEOPLE with intellectual disabilities ,PSYCHOLOGICAL adaptation ,ADULT education workshops ,ADOLESCENCE - Abstract
Background: The measurement of subjective well‐being is challenging with samples of adolescents with intellectual disability (ID) given the cognitive and linguistic difficulties they face in comprehending standardised measures, and as such is primarily based on proxy reports. The lack of appropriate tools needs to be addressed so that adolescents with ID can self‐report on their own well‐being. The current study reports on the use of participatory research methods to adapt and modify two standardised self‐report measures of subjective well‐being suitable for completion by adolescents with ID. Method: Two special schools were recruited for this study. At each school, staff (n = 15) and pupils aged 11–17 years (n = 35) participated. A series of co‐design workshops were conducted to adapt two standardised subjective well‐being measures: Kidscreen‐10 and short‐form Warwick–Edinburgh Mental Well‐being Scale. Results: Specific aspects for measure adaption were identified: simplifying the item wording and phrasing; inclusion of pictorial communication symbols and visual prompts to represent the meaning of items; changing of tense of questions from past to present; asking questions rather than statements; reducing 5‐point Likert scales to 3‐point or dichotomous; presenting one item at a time during administration; and developing alternate formats of the survey to ensure inclusivity. Conclusions: This paper illustrates the value of using participatory research methods when working alongside adolescents with ID and offers methodological, as well as practical, guidance in the context of adapting subjective self‐report measures for this target group, serving as a guide to fellow researchers and clinicians interested in modifying or developing self‐report measures for adolescents with ID. [ABSTRACT FROM AUTHOR]
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- 2022
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25. Patient public involvement (PPI) in health literacy research: Engagement of adults with literacy needs in the co‐creation of a hospital‐based health literacy plan.
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McKenna, Verna B., Sixsmith, Jane, and Byrne, Niki
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PATIENT participation ,HEALTH services accessibility ,TEACHING methods ,STAKEHOLDER analysis ,HOSPITAL health promotion programs ,HEALTH literacy ,MEDICAL care research ,QUALITATIVE research ,MEDICAL care use ,HEALTH ,INFORMATION resources ,COMMUNICATION ,JUDGMENT sampling ,PATIENT-professional relations ,HEALTH promotion ,MEDICAL research ,ADULT education workshops - Abstract
Background: People with literacy needs can experience many challenges in accessing, understanding and using health services and health information. Such challenges can adversely impact patient‐provider interactions and ultimately, health outcomes. Healthcare providers need to be aware of health literacy (HL) to address the demands of healthcare systems, improve their interactions with communities and patients and promote patient engagement for improved health outcomes. Methods: This paper reports on a process of patient and public involvement (PPI) with participants in an adult literacy programme acting as PPI contributors to identify priority areas for a local hospital HL action plan and to develop a protocol for a PPI process with other groups. A qualitative community‐based participatory research study design informed by principles of PPI was undertaken, drawing on the tools of participatory and visual methods, open discussion and workshop format to facilitate a process of co‐creation. Three workshops with six PPI contributors took place to identify issues to be included in the hospital action plan. PPI contributors identified issues and grouped these into priority areas using discussion and ranking procedures. Results: Key areas prioritised for HL action by the PPI contributors were: verbal communication, emphasising the patient's right to understand, and improved understanding of medication use. These were incorporated into the action plan. The workshop format and process were deemed acceptable to the group and input on improvements will be incorporated into further work in this area. Conclusion: PPI acts as a lever in the knowledge translation process. Genuine engagement with service users can meaningfully contribute to relevant and sustainable changes to services as well as foster the empowerment of service users. Patient or Public Contribution: Members of the public with literacy needs actively participated in the co‐creation of a HL action plan for a local hospital and in the development of a protocol for a patient and public process for HL research. [ABSTRACT FROM AUTHOR]
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- 2023
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26. Participatory codesign of patient involvement in a Learning Health System: How can data‐driven care be patient‐driven care?
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Knowles, Sarah E., Allen, Dawn, Donnelly, Ailsa, Flynn, Jackie, Gallacher, Kay, Lewis, Annmarie, McCorkle, Grace, Mistry, Manoj, Walkington, Pat, and Brunton, Lisa
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DATABASES ,PATIENT participation ,MEDICAL information storage & retrieval systems ,MEDICAL care ,PATIENT-centered care ,MENTAL health ,PATIENTS' attitudes ,RESEARCH ethics ,ACTION research ,FIELD notes (Science) ,DESCRIPTIVE statistics ,RESEARCH funding ,PUBLIC opinion ,ADULT education workshops - Abstract
Background: A Learning Health System (LHS) is a model of how routinely collected health data can be used to improve care, creating 'virtuous cycles' between data and improvement. This requires the active involvement of health service stakeholders, including patients themselves. However, to date, research has explored the acceptability of being 'data donors' rather than considering patients as active contributors. The study aimed to understand how patients should be actively involved in an LHS. Design: Ten participatory codesign workshops were conducted with eight experienced public contributors using visual, collective and iterative methods. This led contributors to challenge and revise not only the idea of an LHS but also revise the study aims and outputs. Results: The contributors proposed three exemplar roles for patients in patient‐driven LHS, which aligned with the idea of three forms of transparency: informational, participatory and accountability. 'Epistemic injustice' was considered a useful concept to express the risks of an LHS that did not provide active roles to patients (testimonial injustice) and that neglected their experience through collecting data that did not reflect the complexity of their lives (hermeneutic injustice). Discussion: Patient involvement in an LHS should be 'with and by' patients, not 'about or for'. This requires systems to actively work with and respond to patient feedback, as demonstrated within the study itself by the adaptive approach to responding to contributor questions, to work in partnership with patients to create a 'virtuous alliance' to achieve change. Patient or Public Contribution: Public contributors were active partners throughout, and co‐authored the paper. [ABSTRACT FROM AUTHOR]
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- 2022
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27. Understanding Co‐Design Practice as a Process of "Welldoing".
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Davis, Aaron, Tuckey, Michelle, Gwilt, Ian, and Wallace, Niki
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DESIGN education ,WELL-being ,COLLABORATIVE learning ,PARTICIPATORY design ,ADULT education workshops ,ADULTS ,ADULT education - Abstract
Co‐design and other associated design approaches often deploy creative and making approaches in facilitating collaborative practices. In a therapeutic setting, engagement in creative and making activities have been associated with improvements in people's well‐being, yet when deploying these as part of co‐design practices, these outcomes are often overlooked. This paper presents the results from a series of workshops that focused on the well‐being benefits of participating in co‐design practices. The research uses Max‐Neef's (1991). Theory of Needs to explore how innate human needs might be satisfied through participation in co‐design practices, and demonstrates how this framework might be used for planning and evaluating co‐design practices through a wellbeing lens. Finally, it suggests that future generations of design practitioners would benefit from exposure to the consideration of co‐design as a process of "welldoing." [ABSTRACT FROM AUTHOR]
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- 2023
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28. The development and preliminary implementation evaluation of the Fear Of Recurrence Therapy intervention virtual training workshop.
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Lamarche, Jani, Sehabi, Ghizlène, Chu, Alanna, Boudjatat, Wassim Adlane, Giguère, Lauriane, Langmuir, Tori, Maheu, Christine, and Lebel, Sophie
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ADULT education workshops ,CANCER relapse ,MEDICAL personnel ,PSYCHO-oncology - Abstract
Key points: Several fear of cancer recurrence (FCR) interventions have demonstrated their efficacy but are not yet implemented in routine clinical care.Clinicians have expressed an interest in receiving FCR training, but access and availability are limited.This paper reports on the evaluation of a 5h workshop over 2 days on the Fear Of Recurrence Therapy (FORT) intervention.40 international psychosocial oncology clinicians were provided the workshop at no cost. Evaluation measures included feedback on the workshop, and preliminary outcome measures of their knowledge, self‐efficacy, usage, and implementation barriers/enablers.Majority of participants utilized some or most of the FORT intervention. Results from the training indicate that it was effective, feasible and acceptable. [ABSTRACT FROM AUTHOR]
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- 2023
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29. Uptake of the culturally appropriate ASQ‐TRAK developmental screening tool in the Australian Aboriginal and Torres Strait Islander context.
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D'Aprano, Anita, Brookes, Isabel, Browne, Linda, and Bartlett, Claire
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DIAGNOSTIC reagents & test kits ,TORRES Strait Islanders ,HEALTH of indigenous peoples ,MEDICAL screening ,RETROSPECTIVE studies ,DIAGNOSIS of developmental disabilities ,ABORIGINAL Australians ,CHILD development deviations ,ADULT education workshops - Abstract
Background: Recently in Australia, access to culturally safe developmental practices for Aboriginal and Torres Strait Islander families has been enhanced by the availability of a culturally appropriate developmental screening tool, the Ages and Stages Questionnaire – Talking about Raising Aboriginal Kids (ASQ‐TRAK). This paper aims (i) to describe the uptake of the ASQ‐TRAK developmental screening tool in Aboriginal Community Controlled Organizations and mainstream services in Australia and (ii) to explore the extent to which organizations using the ASQ‐TRAK have engaged training for staff. Methods: A retrospective review of ASQ‐TRAK sales and training records from January 2015 to May 2020 to determine the ASQ‐TRAK distribution by jurisdiction and service type and the number of services that have engaged training. Results: Five hundred ASQ‐TRAK kits have been distributed across 77 agencies. Of those, 100 kits (20%) have been purchased by Aboriginal Community Controlled Organizations. Most have been distributed in the Northern Territory (NT) (178, 36%), Western Australia (165, 33%) and South Australia (64, 13%). Of the 15 ASQ‐TRAK training workshops, nine have been in the NT. Of the 196 practitioners trained, 25 were identified as facilitators for their organization. Conclusion: Despite substantive research translation across Australia, with evidence of its acceptability in different contexts, most Aboriginal Community Controlled Organizations have not yet accessed the ASQ‐TRAK, and most organizations have not participated in training. There is an imperative to progress knowledge translation to improve quality and accessibility of culturally appropriate developmental care. Adequately resourced ASQ‐TRAK implementation support is needed to ensure sustainable implementation at scale. [ABSTRACT FROM AUTHOR]
- Published
- 2023
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30. Community views on 'Can perinatal services safely identify Aboriginal and Torres Strait Islander parents experiencing complex trauma?'.
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Chamberlain, Catherine, Gray, Paul, Herrman, Helen, Mensah, Fiona, Andrews, Shawana, Krakouer, Jacynta, McCalman, Pamela, Elliott, Alison, Atkinson, Judy, O'Dea, Birri, Bhathal, Alex, and Gee, Graham
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WOUNDS & injuries ,MENTAL health ,PARENT attitudes ,MATERNAL health services ,MEDICAL quality control ,TORRES Strait Islanders ,PATIENT participation ,INTERGENERATIONAL relations ,COMMUNICATIVE competence ,RISK assessment ,HOLISTIC medicine ,SELF-efficacy ,INTERPERSONAL relations ,RESEARCH funding ,PARENT-child relationships ,THEMATIC analysis ,DATA analysis software ,PUBLIC opinion ,ADULT education workshops - Abstract
Family and extended kinship systems which nurture healthy, happy children are central to Aboriginal and Torres Strait Islander cultures. Since colonisation, Aboriginal and Torres Strait Islander communities have been impacted by intergenerational cycles of trauma, stemming from colonial violence, genocidal policies and discrimination, including the forced removal of children from their families. Becoming a parent offers a unique life‐course opportunity for trauma recovery and preventing intergenerational trauma. However, identifying or 'recognising' complex trauma carries significant risk of harm for Aboriginal and Torres Strait Islander parents due to reactive prenatal child protection involvement potentially compounding experiences of trauma, and limited benefits due to lack of culturally appropriate support. The Aboriginal‐led participatory Healing the Past by Nurturing the Future project aims to co‐design safe, accessible and feasible perinatal awareness, recognition, assessment and support strategies for Aboriginal and Torres Strait Islander parents experiencing complex trauma. This paper presents views of 38 workshop participants to determine prerequisites for ensuring benefits outweigh risks of assessment to safely recognise parents experiencing complex trauma, consistent with screening criteria. Six essential elements were identified from thematic analysis: high‐quality holistic care; cultural, social and emotional safety; empowerment, choice and control; flexible person‐centred approaches; trusting relationships; and sensitive, skilled communication. Key Practitioner Messages: The impacts of colonisation and rates of Aboriginal and Torres Strait children in out‐of‐home care mean that there can be a myriad of issues facing Aboriginal and Torres Strait Islander parents with regard to perinatal child protection involvement.The benefits must outweigh the risks of identifying parents experiencing complex trauma.Assessment must be offered within foundations of supportive relationships and holistic care in culturally‐safe, empowering settings, where choices are respected and skilled communication approaches are used. [ABSTRACT FROM AUTHOR]
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- 2023
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31. Creating a culture: Reviewing expectations in EJISDC.
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CULTURE ,ADULT education workshops ,DEVELOPING countries - Abstract
Scholarly endeavors are nothing other than community undertakings, in which authors, reviewers, editors and readers participate. If a reviewer first recommends major revisions, then refuses to evaluate the revised manuscript, the SE has the difficult task of finding a new reviewer mid-way through the review process, which is in addition potentially unfair to the authors. Whether reviewers read these guidelines is moot, but we have just edited the email templates that we use when inviting reviewers to include specific links to these guidelines in the hope that they will at least glance at them and so be a little more informed about our expectations for reviews. In this case, the two recent articles, which I have anonymised to A and B, were actually authored by the reviewer, so this looks like a situation (see Tarafdar & Davison, 2020) where the reviewer is asking for more cites to his or her own work. [Extracted from the article]
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- 2022
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32. Ageing well with diabetes: A workshop to co‐design research recommendations for improving the diabetes care of older people.
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Wylie, Thomas A. F., Morris, Anna, Robertson, Elizabeth, Middleton, Ann, Newbert, Carolyn, Andersen, Birthe, Maltese, Giuseppe, Stocker, Rachel, Weightman, Andrew, Sinclair, Alan, and Bain, Stephen C.
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PUBLISHING ,MANUSCRIPTS ,DIABETES ,PATIENT-centered care ,AGING ,ADULT education workshops ,MEDICAL research - Abstract
Aims: To identify key research questions where answers could improve care for older people living with diabetes (PLWD), and provide detailed recommendations for researchers and research funders on how best to address them. Methods: A series of online research workshops were conducted, bringing together a range of PLWD and an acknowledged group of academic and clinical experts in their diabetes care to identify areas for future research. Throughout the pre‐workshop phase, during each workshop, and in manuscript preparation and editing, PLWD played an active and dynamic role in discussions as part of both an iterative and narrative process. Results: The following key questions in this field were identified, and research recommendations for each were developed: How can we improve our understanding of the characteristics of older people living with diabetes (PLWD) and their outcomes, and can this deliver better person‐centred care?How are services to care for older PLWD currently delivered, both for their diabetes and other conditions? How can we optimise and streamline the process and ensure everyone gets the best care, tailored to their individual needs?What tools might be used to evaluate the level of understanding of diabetes in the older population amongst non‐specialist Healthcare Professionals (HCPs)?How can virtual experts or centres most effectively provide access to specialist multi‐disciplinary team (MDT) expertise for older PLWD and the HCPs caring for them?Is a combination of exercise and a nutrition‐dense, high protein diet effective in the prevention of the adverse effects of type 2 diabetes and deterioration in frailty, and how might this be delivered in a way which is acceptable to people with type 2 diabetes?How might we best use continuous glucose monitoring (CGM) in older people and, for those who require support, how should the data be shared?How can older PLWD be better empowered to manage their diabetes in their own home, particularly when living with additional long‐term conditions?What are the benefits of models of peer support for older PLWD, both when living independently and when in care? Conclusions: This paper outlines recommendations supported by PLWD through which new research could improve their diabetes care and calls on the research community and funders to address them in future research programmes and strategies. [ABSTRACT FROM AUTHOR]
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- 2022
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33. UK Nutrition Research Partnership 'Hot Topic' workshop: Vitamin D—A multi‐disciplinary approach to (1) elucidate its role in human health and (2) develop strategies to improve vitamin D status in the UK population.
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Lanham‐New, Susan A., Buttriss, Judith L., Gibson‐Moore, Helena, Staines, Katherine A., Webb, Ann R., Cashman, Kevin D., Hewison, Martin, Martineau, Adrian R., Smith, Colin P., Butler‐Laporte, Guillaume, and Bouillon, Roger
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RESEARCH ,STRATEGIC planning ,NUTRITION ,PUBLIC health ,VITAMIN D ,ADULT education workshops ,ULTRAVIOLET radiation - Abstract
Vitamin D is truly unique—not a 'vital' amine in the true sense of the word, but rather a prohormone, which is produced in the skin during exposure to sunlight (UVB radiation at 290–315 nm) and which can also be obtained from food and from supplements. A high prevalence of low vitamin D status has been reported across the world in a wide range of population groups, and this includes communities living in low latitude areas despite the abundance of sunlight. It is accepted that vitamin D status is reflected by the level of the circulating metabolite 25‐hydroxyvitamin D (25[OH]D), which is produced by hepatic hydroxylation of vitamin D, derived either from the skin from UV exposure or the gut from oral intake. Vitamin D has been associated with a wide range of health outcomes, but controversies remain as to their exact nature and extent and whether associations are in the causal pathway. In order to enable wider discussions on this nutrient, a 'Hot Topic' Vitamin D Workshop achieved funding from the UK Nutrition Research Partnership Medical Research Council call. The objectives of the workshop were (1) to elucidate the role of vitamin D in human health and (2) develop strategies to improve vitamin D status in the UK population. This paper provides a detailed resume of the discussions of the workshop; of the presentations and concomitant Q&As; and of identified areas for future research. [ABSTRACT FROM AUTHOR]
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- 2022
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34. Recommendations from Diabetes UK's 2022 diabetes and physical activity workshop.
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Morris, Anna, Bright, Chris, Cocks, Matthew, Gibson, Neil, Goff, Louise, Greaves, Colin, Griffin, Simon, Jane, Ben, Kinnafick, Florence, Robb, Paul, Roberts, Michelle, Salman, David, Saxton, John, Taylor, Adrian, West, Daniel, Yates, Thomas, Andrews, Rob C., and Gill, Jason M. R.
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PRIORITY (Philosophy) , *DIABETES , *EXERCISE physiology , *PHYSICAL activity , *PATIENT monitoring , *PHYSICAL education for people with disabilities , *RESEARCH funding , *THEMATIC analysis , *ADULT education workshops , *PANCREATIC beta cells , *EVALUATION ,RESEARCH evaluation - Abstract
Aims: To describe the process and outputs of a workshop convened to identify key priorities for future research in the area of diabetes and physical activity and provide recommendations to researchers and research funders on how best to address them. Methods: A 1‐day research workshop was conducted, bringing together researchers, people living with diabetes, healthcare professionals, and members of staff from Diabetes UK to identify and prioritise recommendations for future research into physical activity and diabetes. Results: Workshop attendees prioritised four key themes for further research: (i) better understanding of the physiology of exercise in all groups of people: in particular, what patient metabolic characteristics influence or predict the physiological response to physical activity, and the potential role of physical activity in beta cell preservation; (ii) designing physical activity interventions for maximum impact; (iii) promoting sustained physical activity across the life course; (iv) designing physical activity studies for groups with multiple long‐term conditions. Conclusions: This paper outlines recommendations to address the current gaps in knowledge related to diabetes and physical activity and calls on the research community to develop applications in these areas and funders to consider how to stimulate research in these areas. [ABSTRACT FROM AUTHOR]
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- 2023
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35. Determinants of adoption of computer‐assisted audit tools and techniques among internal audit units in Ghana.
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Awuah, Benjamin, Onumah, Joseph Mensah, and Duho, King Carl Tornam
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INTERNAL auditing ,BIG data ,STRUCTURAL equation modeling ,FRAUD investigation ,INFORMATION superhighway ,ADULT education workshops - Abstract
This study investigates the determinants of adoption of computer‐assisted audit tools and techniques (CAATTs) among internal audit units in Ghana. Data for the study was drawn from a sample of 75 private and state‐owned enterprises through questionnaires while the partial least squares structural equation modeling was employed to analyze and test the hypotheses. The findings indicate that albeit CAATT adoption within internal audit units is fairly high, the actual usage in the areas of risk assessment, fraud detection, substantive testing, and analytical procedures are still low. Using the extended technology‐organization‐environment (TOE) framework, results show that CAATT behavioral intention is driven by technological readiness, organizational readiness, and environmental readiness but not personal innovativeness. In addition, CAATT behavioral intention influences CAATT adoption among the internal audit units. The findings provide valuable insights to management, heads of audit units, policymakers, and regulators on ways to improve the adoption and use of CAATT. Firms should invest more in training workshops on big data analytics, hiring more data scientists or data engineers, and equipping internal audit units with the information technology infrastructure. The paper complements prior research by applying a hierarchical component modeling technique to the extended TOE framework to investigate CAATT adoption in internal audits. [ABSTRACT FROM AUTHOR]
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- 2022
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36. The supporting role of learning analytics for a blended learning environment: Exploring students' perceptions and the impact on relatedness.
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Ameloot, Elise, Rotsaert, Tijs, and Schellens, Tammy
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SCHOOL environment ,EXPERIMENTAL design ,PSYCHOLOGY of college students ,SOCIAL support ,FOCUS groups ,MOTIVATION (Psychology) ,RESEARCH methodology ,INTERNET ,ONE-way analysis of variance ,SATISFACTION ,CURRICULUM ,LEARNING strategies ,PRE-tests & post-tests ,T-test (Statistics) ,STUDENTS ,UNIVERSITIES & colleges ,TEACHERS ,DESCRIPTIVE statistics ,QUESTIONNAIRES ,REPEATED measures design ,STUDENT attitudes ,NEEDS assessment ,DATA analysis software ,THEMATIC analysis ,ADULT education workshops - Abstract
Background: Although blended learning (BL) has multiple educational prospects, it also poses challenges such as keeping students motivated. Objectives: This study investigates students' perceptions of how learning analytics (LA) can be used to support the design of a BL environment in order to promote students' basic need for relatedness, which is a dimension of motivation. Hence, it is hypothesized that sharing LA trends with students and illustrating which course adaptations were performed based on these trends, will result in positive student perceptions and can support students' basic need satisfaction for relatedness. Methods: A quasi‐experimental intervention study was executed using a mixed‐method approach (N = 257 students) in a BL course in university‐based teacher education. The intervention focuses on three types of learning management system LA data (general, content, and background) that are actively used by the instructor. General data consists of generated time on task, content data deals with the content of a learning path and background data includes information about students' previous education. Results and Conclusions: The results show that students' perceptions regarding these LA are positive and most in favour of content data. Moreover, the qualitative data illustrate that students acknowledge the potential value of LA for stimulating relatedness. Implications: Important recommendations for the use of LA in BL environments are (1) interest and commitment by the instructor by means of a powerful course intervention, (2) to consider gathering LA data anonymously on the group level, (3) instructors should communicate about the nature of the collected data, (4) actively process this input and, (5) use it in a formative manner. Lay Description: What is currently known about the subject matter: Motivation can decrease in the online part of blended learning courses.Learning Analytics can offer instructors' insight into students' online activities.Students' LA perceptions are positive, but show also averse to any form of data collection that might put them under surveillance of the instructor. What this paper adds to this: Three types of LA data, consisting of both quantitative and qualitative data, provide a broad and varied insight into students' online activities.Students' perceptions regarding these different types of LA data are positive.LA data informs instructors to adapt the learning environment in order to support students' needs.Students believe LA can promote students' basic need for relatedness (which is a dimension of motivation), if the instructor applies LA to enrich the learning environment. Implications of study findings for practitioners: Instructors should actively process the LA data and show involvement with a powerful intervention.It is crucial to communicate to students in a transparent way about the gathering of LA data and why specific types of data have been chosen and will be used.When designing blended learning courses, it is important to only use LA data on students' performances in a formative manner.It is important to gather LA data on a group level (e.g., per group of students who follow the same face‐to‐face part) in the LA design, rather than the student level. [ABSTRACT FROM AUTHOR]
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- 2022
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37. Oral potentially malignant disorders: A consensus report from an international seminar on nomenclature and classification, convened by the WHO Collaborating Centre for Oral Cancer.
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Warnakulasuriya, Saman, Kujan, Omar, Aguirre‐Urizar, José M., Bagan, José V., González‐Moles, Miguel Ángel, Kerr, Alexander R., Lodi, Giovanni, Mello, Fernanda Weber, Monteiro, Luis, Ogden, Graham R., Sloan, Philip, and Johnson, Newell W.
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LUPUS erythematosus complications ,CONSENSUS (Social sciences) ,MOUTH tumors ,ORAL leukoplakia ,GRAFT versus host disease ,ORAL lichen planus ,DYSKERATOSIS congenita ,RISK assessment ,TERMS & phrases ,INTERPROFESSIONAL relations ,INTERNATIONAL agencies ,ORAL mucosa ,EPIDERMOLYSIS bullosa ,ADULT education workshops ,PRECANCEROUS conditions ,DISEASE risk factors ,DISEASE complications - Abstract
Oral potentially malignant disorders (OPMDs) are associated with an increased risk of occurrence of cancers of the lip or oral cavity. This paper presents an updated report on the nomenclature and the classification of OPMDs, based predominantly on their clinical features, following discussions by an expert group at a workshop held by the World Health Organization (WHO) Collaborating Centre for Oral Cancer in the UK. The first workshop held in London in 2005 considered a wide spectrum of disorders under the term "potentially malignant disorders of the oral mucosa" (PMD) (now referred to as oral potentially malignant disorders: OPMD) including leukoplakia, erythroplakia, proliferative verrucous leukoplakia, oral lichen planus, oral submucous fibrosis, palatal lesions in reverse smokers, lupus erythematosus, epidermolysis bullosa, and dyskeratosis congenita. Any new evidence published in the intervening period was considered to make essential changes to the 2007 classification. In the current update, most entities were retained with minor changes to their definition. There is sufficient evidence for an increased risk of oral cancer among patients diagnosed with "oral lichenoid lesions" and among those diagnosed with oral manifestations of 'chronic graft‐versus‐host disease'. These have now been added to the list of OPMDs. There is, to date, insufficient evidence concerning the malignant potential of chronic hyperplastic candidosis and of oral exophytic verrucous hyperplasia to consider these conditions as OPMDs. Furthermore, due to lack of clear evidence of an OPMD in epidermolysis bullosa this was moved to the category with limited evidence. We recommend the establishment of a global research consortium to further study the natural history of OPMDs based on the classification and nomenclature proposed here. This will require multi‐center longitudinal studies with uniform diagnostic criteria to improve the identification and cancer risk stratification of patients with OPMDs, link them to evidence‐based interventions, with a goal to facilitate the prevention and management of lip and oral cavity cancer. [ABSTRACT FROM AUTHOR]
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- 2021
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38. Comparing learning ecologies of primary graphical programming: create or fix?
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Neutens, Tom, Barbion, Evelien, Coolsaet, Kris, and wyffels, Francis
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COMPUTER software ,SCHOOL environment ,TEACHING methods ,RESEARCH methodology ,ROBOTICS ,COMPARATIVE studies ,ABILITY ,TRAINING ,DESCRIPTIVE statistics ,SCHOOL children ,STUDENT attitudes ,CURRICULUM planning ,STATISTICAL sampling ,ADULT education workshops ,VIDEO recording ,CHILDREN - Abstract
In the last few years, programming, computational thinking, and robotics are more frequently integrated into elementary education. This integration can be done in many different ways. However, it is still unclear which teaching methods work in which situations. To provide some clarity in this area, we compared two methods of integrating programming into a primary robotics workshop for learners aged ten to twelve. In one method, students create programs from scratch; in the other, they start with a faulty program they have to fix. These teaching methods were evaluated using the framework of learning ecology, which provides a holistic framework for assessing complex learning environments. We identified different indicators of learning ecology and assessed our workshops using a mixed‐methods approach. Our results showed no difference between the groups on the intrinsic dimension of a learning ecology. However, on the experiential dimension, the learners in the create group scored better on all tests. Our results show the value of a multidimensional assessment of learning ecology to understand different teaching techniques. Additionally, the results provide us with important insights on how to integrate programming into a primary robotics curriculum enabling teachers to select better methods for teaching computing in their classroom. Lay Description: What is already known about this topic?: More and more countries are adding programming and computational thinking to their primary school curriculaTeacher need practical, efficient and effective ways to integrate programming into their coursesTeachers often opt for scaffolding techniques when teaching programming, however there is no conclusive research about which techniques work in which situations What this paper adds?: This research compares two methods for integrating programming into primary roboticsThese methods are evaluated using the intrinsic and experiential dimensions of learning ecology to get a deeper understanding of the underlying learning processesWe show that using learning ecology as a framework for learning can give deeper insights into learning practiceOur experiments show that integrating programming should preferably be done by letting learners create programs from scratch and not fix programs with errors Implications for practice and/or policy: Provide teachers with insights into the effects of different integration methods for programmingAllowing teachers to reason about why certain techniques are less effective than othersHanding teachers a framework for assessing the way they choose to integrate programming into their curriculum [ABSTRACT FROM AUTHOR]
- Published
- 2021
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39. Using World Cafés to engage an Australian culturally and linguistically diverse community around human papillomavirus vaccination.
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Prokopovich, Kathleen, Phillipson, Lyn, West, Leissa, Stanoevska, Biljana, Street, Jackie, and Braunack‐Mayer, Annette
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CULTURAL pluralism ,QUALITATIVE research ,PAPILLOMAVIRUS diseases ,HUMAN papillomavirus vaccines ,ACTION research ,DECISION making ,RESEARCH funding ,THEMATIC analysis ,GROUP process ,ADULT education workshops ,HEALTH promotion - Abstract
Introduction: Internationally, cultural factors are associated with vaccine uptake and completion in ethnic minority communities. Whilst Australia has achieved high human papillomavirus (HPV) vaccination, little is known about how culture or ethnicity influences HPV vaccination engagement. To address these gaps, we partnered with our Local Health District to explore how one culturally and linguistically diverse (CALD) community engages with school and HPV vaccination. Methods: We adapted a participatory research method (the World Café) to engage one local CALD community—the Macedonian community (Our bi‐cultural researcher and participants preferred the term 'Macedonia' rather than The Republic of North Macedonia as outlined in the 2018 Prespa agreement) in New South Wales (Australia)—to discuss HPV and school vaccination. Our qualitative analysis combined deductive codes taken from the Tailoring Immunization Programme framework, inductive codes guided by narrative inquiry (temporality, sociality and place) and previously known vaccination 'trust' frameworks. Results: In late 2019, 31 local Macedonian community members were purposely recruited for two World Cafés (n = 15 mothers/grandmothers and n = 16 young adults). Our themes reveal a community narrative grounded in historical vaccine experiences, family views on vaccination and a general trust in schools. Participants collectively discussed how 'increasing knowledge' and 'tailoring health communications' could strengthen community vaccine decision‐making. Conclusion: This study demonstrates how research partnerships and participatory methods can be applied in CALD community settings to research engagement with school and HPV vaccination. Our World Café dialogues highlight a positive narrative about vaccines, where community vaccination behaviours were built on multilayer trust relationships despite low vaccine knowledge. Our findings further knowledge around 'public trust' in school vaccination, highlighting the importance of existing (or missing) trust relationships when tailoring vaccine communication to local CALD communities. Patient or Public Contribution: Participants who took part in the World Cafes were all local Macedonian community parents or young adults who have been or will be exposed to the health services offered by school‐based HPV vaccination. Thus, all the data collected came from their personal experiences with the school vaccination programme, or how they expect to participate in the programme. To ensure our study design was culturally appropriate and tailored to the Macedonian community, we engaged with the relevant local health stakeholders (the bi‐cultural Multicultural Health Officer and Multicultural Health Service Manager Programme Director) to adapt and refine the World Café method for this context and setting. Our local health stakeholders also reviewed our preliminary findings, assisted with data interpretation and participated in manuscript editing. [ABSTRACT FROM AUTHOR]
- Published
- 2023
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40. When the wheels come off: Actor‐network therapy for mental health recovery in the bicycle repair workshop.
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MECHANICS (Physics) ,WELL-being ,CONVALESCENCE ,CONVERSATION ,LINGUISTICS ,MENTAL health ,VOLUNTEERS ,PSYCHOSOCIAL factors ,BICYCLES ,PSYCHOTHERAPY ,PSYCHOLOGICAL distress ,ADULT education workshops ,MENTAL illness - Abstract
Professional accounts of emotional distress originate from within mainstream mental illness discourses and are underpinned by largely conjectural biomedical, brain‐based conceptions of disorder. Alternative, formulation‐based approaches remain delimited by cultural norms and linguistic resources. Service users frequently declare the most ordinary aspects of therapy the most helpful: listening, understanding, and respectfulness; these are not contingent upon the presence of a mental health professional. This paper describes ameliorations in states of emotional distress amongst volunteer trainee mechanics in a bicycle workshop, which has little overtly to do with mental health. Possible explanations for these ameliorations, or 'recoveries', are presented. In an enabling setting that offers the social and material resources conducive to particular ways of being, an applied actor‐network approach is introduced as a practical way to disentangle the concomitant complexities of bicycles and everyday life. This approach to analysing states of distress—introduced here as 'actor‐network therapy'—combines notions of enactment and enhandedness in the appreciation of 'engrenage' – the intriguing intricacy of locally generated, provisional realities. [ABSTRACT FROM AUTHOR]
- Published
- 2021
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41. Digital reminiscence app co‐created by people living with dementia and carers: Usability and eye gaze analysis.
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Boyd, Kyle, Bond, Raymond, Ryan, Assumpta, Goode, Deborah, and Mulvenna, Maurice
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MEMORY ,MOBILE apps ,DIGITAL technology ,USER interfaces ,RESEARCH methodology ,EYE movement measurements ,DEMENTIA patients ,SOFTWARE architecture ,PSYCHOLOGY of caregivers ,DEMENTIA ,POLICY sciences ,ADULT education workshops - Abstract
Background: This research reports on a pilot study that examined the usability of a reminiscence app called 'InspireD' using eye tracking technology. The InspireD app is a bespoke digital intervention aimed at supporting personalized reminiscence for people living with dementia and their carers. The app was developed and refined in two co‐creation workshops and subsequently tested in a third workshop using eye tracking technology. Intervention: Eye tracking was used to gain insight into the user's cognition since our previous work showed that the think‐aloud protocol can add to cognitive burden for people living with dementia while also making the test more unnatural. Results: Results showed that there were no barriers to using a wearable eye tracker in this setting and participants were able to use the reminiscence app freely. However, some tasks required prompts from the observer when difficulties arose. While prompts are not normally used in usability testing (as some argue the prompting defeats the purpose of testing), we used 'prompt frequency' as a proxy for measuring the intuitiveness of the task. There was a correlation between task completion rates and prompt frequency. Results also showed that people living with dementia had fewer gaze fixations when compared to their carers. Carers had greater fixation and saccadic frequencies when compared to people living with dementia. This perhaps indicates that people living with dementia take more time to scan and consume information on an app. A number of identified usability issues are also discussed in the paper. Patient or Public Contribution: The study presents findings from three workshops which looked at user needs analysis, feedback and an eye tracking usability test combined involving 14 participants, 9 of whom were people living with dementia and the remaining 5 were carers. [ABSTRACT FROM AUTHOR]
- Published
- 2021
- Full Text
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42. Using outcome measures in child protection work.
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Hood, Rick, Lansley, Sue, Mitchell, Toni, and Gaskell-Mew, Elaine
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PROFESSIONAL practice ,OCCUPATIONAL roles ,PSYCHOLOGY of social workers ,EVIDENCE-based medicine ,HEALTH outcome assessment ,QUALITATIVE research ,LEARNING strategies ,FAMILY roles ,CHILD welfare ,ACTION research ,DECISION making ,INTERPROFESSIONAL relations ,JUDGMENT sampling ,THEMATIC analysis ,SOCIAL case work ,ADULT education workshops - Abstract
While many evidence-based tools and measures exist to support child protection practice, in the United Kingdom, there is little evidence of their routine use in casework. This paper reports on a qualitative study exploring the use of such tools with children and families receiving statutory social care services. Fifteen social workers working in child safeguarding teams in two local authorities in Southeast England agreed to incorporate the use of outcome measures into their casework over a 6-month period. Qualitative data were collected through monthly action learning workshops held separately in each local authority. The results showed how the impact of using the measures was shaped by a combination of institutional factors, practice context and the dynamics of casework. Outcome measures were found to have benefits as well as limitations with respect to partnership working, assessment and decision-making and overall social work practice. Implications are discussed for the prospects of enhancing the use of evidence-based tools in statutory social work with children and families. [ABSTRACT FROM AUTHOR]
- Published
- 2021
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43. From Research to Knowledge Translation: Co‐Producing Resources to Raise Awareness of Meals on Wheels in England.
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Papadaki, Angeliki, Willis, Paul, Armstrong, Miranda Elaine Glynis, and Cameron, Ailsa
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NUTRITIONAL value ,SOCIAL media ,INTERPROFESSIONAL relations ,DIFFUSION of innovations ,RESEARCH funding ,QUALITATIVE research ,SOCIAL services ,PHONOLOGICAL awareness ,PUBLIC opinion ,EXPERIENCE ,TRANSLATIONAL research ,FOOD relief ,ADULT education workshops ,MEALS ,MOTION pictures ,TEXT messages ,SOFTWARE architecture ,SELF-perception ,SOCIAL isolation - Abstract
Background: Meals on Wheels (MoWs) could help adults with care and support needs continue living independently. However, many people are not aware that the service still exists in England, or that it could provide benefits beyond nutrition. Objective: Working with an existing advisory group of six people with lived experience of MoWs (an adult who uses MoWs and people who have referred a family member to MoWs), this work aimed to co‐produce knowledge translation resources (two infographics and a film) to raise awareness of MoWs and their benefits. Methods: Four participatory online workshops were held in May–July 2023, to establish perceived high‐priority themes from recent qualitative research that should be included in the resources, and preferences about message content, language, design, and how the resources should be disseminated. Findings: The most important perceived MoWs benefits that the group agreed should be included in the resources were: the importance of a nutritious meal that requires no preparation; the service's reliability/consistency; the importance of interactions in reducing social isolation, and; the ease to commence the service. The group highlighted the need for language to be nontechnical and invitational, and for images to relate to respective messages, and be inclusive of anyone who could benefit from MoWs. Several routes for dissemination were proposed, highlighting the need to disseminate to the NHS, social care organisations and community groups. Conclusion: These co‐produced resources could enhance adult social care delivery in England, as raising awareness of MoWs and their benefits could increase referral rates, so that more adults with care and support needs can benefit from the service. Patient or Public Contribution: An advisory group of people with lived experience of MoWs (users of the service and family referrers) participated in the workshops, extensively discussed the findings of earlier research, co‐produced the knowledge translation resources, and advised on the implications and future dissemination steps. The group also provided informal feedback on a draft of this manuscript. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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- View/download PDF
44. Codesign and Launch of 'On the Ball': An Inclusive Community‐Based 'Testicular Awareness' Campaign.
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Saab, Mohamad M., Shetty, Varsha N., McCarthy, Megan, Davoren, Martin P., Flynn, Angela, Kirby, Ann, Robertson, Steve, Shorter, Gillian W., Murphy, David, Rovito, Michael J., Shiely, Frances, and Hegarty, Josephine
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MEDICAL care research ,SOCIAL media ,INTERPROFESSIONAL relations ,RESEARCH funding ,SIGNS & symbols ,QUESTIONNAIRES ,STATISTICAL sampling ,JUDGMENT sampling ,MARKETING ,THEMATIC analysis ,SOUND recordings ,ADVERTISING ,MASS media ,TESTICULAR diseases ,ADULT education workshops ,RESEARCH methodology ,HEALTH promotion ,SEXUAL minorities - Abstract
Introduction: Increased awareness of testicular diseases can lead to early diagnosis. Evidence suggests that men's awareness of testicular diseases is low, with many expressing their willingness to delay help‐seeking for symptoms of concern. The risk of testicular diseases is higher in gender and sexual minority groups. In this study, we discuss the codesign, refinement and launch of 'On the Ball', an inclusive community‐based 'testicular awareness' campaign. Methods: The World Café participatory research methodology was used. Individuals from Lesbian, Gay, Bisexual, Transgender and Queer+ friendly organisations, testicular cancer survivors, policymakers, media/marketing experts and graphic designers were recruited. Participants were handed a brief for 'On the Ball', which was designed based on feedback from a previous World Café workshop. They were assigned to three tables. Participants rotated tables at random for three 20‐min rounds of conversations. Each table had a facilitator who focussed on one element of the campaign brief. Data were collected using audio recorders and in writing and were analysed thematically. Results: Thirteen individuals participated in the workshop. The following themes emerged from the data: (i) campaign identity, (ii) campaign delivery and (iii) campaign impact. Participants recommended enhancements to the campaign logo, slogan, social media posts and poster. They suggested delivering the campaign online via social media and offline using various print and broadcast media. Participants recommended targeting areas with a large number of men such as workplaces. To help measure the impact of the campaign, participants proposed capturing social media analytics and tracking statistics relating to testicular diseases. Recommendations were used to refine the 'On the Ball' campaign and launch it in a university. In total, 411 students engaged with the various elements of the campaign during the soft launch. Conclusions: 'On the Ball' campaign visuals ought to be inclusive. Online and offline campaign delivery is warranted to reach out to a wider cohort. Campaign impact can be captured using social media analytics as well as measuring clinical outcomes relating to testicular diseases. Future research is needed to implement the campaign online and offline, explore its impact and evaluate its feasibility, acceptability, cost and effect on promoting testicular awareness. Patient or Public Contribution: The 'On the Ball' campaign was codesigned and refined with members of Lesbian, Gay, Bisexual, Transgender and Queer+ friendly organisations, testicular cancer survivors, health policymakers, media and marketing experts and graphic designers using the World Café participatory research methodology. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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45. The process of co‐designing a model of social prescribing: An Australian case study.
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Oster, Candice, Powell, Ashleigh, Hutchinson, Claire, Anderson, Debra, Gransbury, Bill, Walton, Martin, O'Brien, Jenny, Raven, Susan, and Bogomolova, Svetlana
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SOCIAL media ,COMMUNITY health services ,INCOME ,HEALTH status indicators ,RESEARCH funding ,SOCIAL services ,FOOD ,ADULT education workshops ,COMMUNICATION ,HOUSING ,NEEDS assessment ,EMPLOYMENT ,SOCIAL isolation ,WELL-being ,MEDICAL referrals - Abstract
Introduction: Social needs such as housing, employment, food, income and social isolation are having a significant impact on individuals, families and communities. Individuals are increasingly presenting to health settings with social needs, which are ill‐equipped to address nonmedical needs. Social prescribing is a systematic approach connecting the health, social and community sectors to better address social needs and improve health and wellbeing. Social prescribing interventions are being implemented world‐wide. With variability in health and social care systems internationally, it is important that social prescribing interventions are co‐designed with key stakeholders to ensure they can be implemented and sustained within local systems. Methods: This Australian case study provides a detailed description of the process undertaken to co‐design a social prescribing service model in a regional area. Four co‐design workshops were undertaken, two with health and social care professionals and two with community members. The project followed an iterative process of resourcing, planning, recruiting, sensitising, facilitation, reflection and building for change across the workshops. Results: Through this process, key stakeholders were able to successfully co‐design a social prescribing model of care for the region. Conclusion: By demonstrating the process and materials used in our project, we aim to open the 'black box' of co‐design for social prescribing and provide ideas and resources for others to adapt and utilise. Patient or Public Contribution: The project was designed and undertaken by a steering committee comprising university‐based researchers (authors C. O. and S. B.), local government (author D. A.) and health, social and community services (authors B. G., M. W., J. O. and S. R.). Members of the steering committee participated in project design, participant recruitment, workshop facilitation, data analysis and interpretation. [ABSTRACT FROM AUTHOR]
- Published
- 2024
- Full Text
- View/download PDF
46. 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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47. Training and education, what has changed this last decade?
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Hoekstra, Bettie, Amiri, Fariba, van Beenen, Suzanne, Winkels, Bieneke, van Leeuwen, Mieke, Hesseling, Lilliane, and Hoogsteen, Anneke
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NURSING education ,NURSING ,TEACHING methods ,SELF-management (Psychology) ,PERITONEAL dialysis ,QUANTITATIVE research ,RETROSPECTIVE studies ,CURRICULUM ,NEPHROLOGY ,SURVEYS ,COMPARATIVE studies ,NURSE-patient relationships ,QUALITATIVE research ,SELF-efficacy ,LEARNING strategies ,HEMODIALYSIS facilities ,TEACHING aids ,QUESTIONNAIRES ,NURSES ,PATIENT education ,PROCEDURE manuals ,HEMODIALYSIS ,ADULT education workshops - Abstract
Background: The Dutch manual for the best care regarding training and education of our patients, as created by the special interest group for peritoneal dialysis (SIG PD), was revised. Objectives: The aim of this paper is to describe topics learned from the manual revision, supported by noticed response changes in surveys from 2009 to 2019. Design: Quantitative nursing research, using similar surveys to compare training and education over the last decade. Additionally, a brief search for literature was performed. Participants: Dutch dialysis nurses. Approach: In 2009, nurses were approached through an online survey sent to all dialysis centres in the Netherlands. In 2019, a similar survey was distributed during our annual Dutch nephrology days. Both surveys were compared and conclusions were drawn. Findings: Retrieved information was divided into basic topics and compared. More important, our findings show that even after a decade, there is still no special education for the nurses and patient training is given based on experience alone. Furthermore, multiple nurses are involved in patient training, with varying materials. There are more home visits with training at home and retraining is more suitable. A growth in assisted PD implies more involvement by community nurses. Also, more acute PD is seen, with a different structure of training. Conclusions: The manual was revised with input from our nurses and new guidelines, so we can uplift the education of peritoneal dialysis for the benefit of our patients, caretakers, and community nurses. As SIG PD we can support the dialysis nurses. [ABSTRACT FROM AUTHOR]
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- 2021
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48. Advancing the Care Experience for patients receiving Palliative care as they Transition from hospital to Home (ACEPATH): Codesigning an intervention to improve patient and family caregiver experiences.
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McCoy, Madeline, Shorting, Taylor, Mysore, Vinay Kumar, Fitzgibbon, Edward, Rice, Jill, Savigny, Meghan, Weiss, Marianne, Vincent, Daniel, Hagarty, Meaghen, MacLeod, Krystal Kehoe, Ernecoff, Natalie C., Pattison, Rex, Kornberg, Mona, Bruni, Adrianna, Bush, Shirley H., Kuluski, Kerry, Fiset, Valerie, Li, Cecilia, Parsons, Henrique A., and Lalumière, Geneviève
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MEDICAL care research ,HOME care services ,PALLIATIVE treatment ,ACADEMIC medical centers ,RESEARCH funding ,HOSPITAL nursing staff ,PATIENT discharge instructions ,TRANSITIONAL care ,CAREGIVERS ,PATIENT-centered care ,ADULT education workshops ,ATTITUDES of medical personnel ,QUALITY assurance ,PHYSICIANS ,PATIENTS' attitudes ,CAREGIVER attitudes - Abstract
Background: Returning home from the hospital for palliative‐focused care is a common transition, but the process can be emotionally distressing and logistically challenging for patients and caregivers. While interventions exist to aid in the transition, none have been developed in partnership with patients and caregivers. Objective: To undergo the initial stages of codesign to create an intervention (Advancing the Care Experience for patients receiving Palliative care as they Transition from hospital to Home [ACEPATH]) to improve the experience of hospital‐to‐home transitions for adult patients receiving palliative care and their caregiver(s). Methods: The codesign process consisted of (1) the development of codesign workshop (CDW) materials to communicate key findings from prior research to CDW participants; (2) CDWs with patients, caregivers and healthcare providers (HCPs); and (3) low‐fidelity prototype testing to review CDW outputs and develop low‐fidelity prototypes of interventions. HCPs provided feedback on the viability of low‐fidelity prototypes. Results: Three patients, seven caregivers and five HCPs participated in eight CDWs from July 2022 to March 2023. CDWs resulted in four intervention prototypes: a checklist, quick reference sheets, a patient/caregiver workbook and a transition navigator role. Outputs from CDWs included descriptions of interventions and measures of success. In April 2023, the four prototypes were presented in four low‐fidelity prototype sessions to 20 HCPs. Participants in the low‐fidelity prototype sessions provided feedback on what the interventions could look like, what problems the interventions were trying to solve and concerns about the interventions. Conclusion: Insights gained from this codesign work will inform high‐fidelity prototype testing and the eventual implementation and evaluation of an ACEPATH intervention that aims to improve hospital‐to‐home transitions for patients receiving a palliative approach to care. Patient or Public Contribution: Patients and caregivers with lived experience attended CDWs aimed at designing an intervention to improve the transition from hospital to home. Their direct involvement aligns the intervention with patients' and caregivers' needs when transitioning from hospital to home. Furthermore, four patient/caregiver advisors were engaged throughout the project (from grant writing through to manuscript writing) to ensure all stages were patient‐ and caregiver‐centred. [ABSTRACT FROM AUTHOR]
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- 2024
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49. Co‐designing resources to support older people with intellectual disabilities and their families plan for parental death and transitions in care.
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Anderson‐Kittow, Rebecca, Keagan‐Bull, Richard, Giles, Jo, and Tuffrey‐Wijne, Irene
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RESEARCH funding ,FOCUS groups ,INTERVIEWING ,QUESTIONNAIRES ,FAMILIES ,PARENTAL death ,INTELLECTUAL disabilities ,TRANSITIONAL care ,CAREGIVERS ,ADULT education workshops ,SOCIAL support ,ADVANCE directives (Medical care) - Abstract
Background: Older people with intellectual disabilities and their families report a lack of support for planning for parental death and transitions in care. This article aims to demonstrate the process of co‐designing resources to support older people with intellectual disabilities and their families to plan for the future. Methods: Following interviews and focus groups with older people with intellectual disabilities and their families, we used an adapted experience‐based co‐design process to develop planning ahead resources. This included a 'trigger film' summarising findings from the earlier interview study, 12 co‐design workshops and a user feedback phase. Results: The co‐design group developed a set of 102 'Planning Ahead Cards' to help families to talk about the future and prepare for meetings with social care professionals. The group made decisions about the content, format and design of resources, and how co‐design workshops would run. The user feedback phase led to changes to the cards, and families and stakeholder groups suggested that they would be useful for planning ahead. Conclusion: The Planning Ahead Cards may facilitate planning for parental death and transitions in care for older people with intellectual disabilities and their families. The co‐design approach was key to ensuring that the resources were useful and accessible for families. Patient or Public Contribution: People with intellectual disabilities and their families contributed to the design of the resources through the co‐design workshops and feedback phase. The research team includes a research assistant with intellectual disabilities who co‐facilitated co‐design workshops and co‐authored this article. [ABSTRACT FROM AUTHOR]
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- 2024
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50. Co‐producing a board game to learn and engage about dementia inequalities: First impacts on knowledge in the general population.
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Giebel, Clarissa, Hanna, Kerry, Tetlow, Hilary, Gabbay, Mark, and Cannon, Jacqui
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DIAGNOSIS of dementia ,TREATMENT of dementia ,PATIENT participation ,STAKEHOLDER analysis ,GAMES ,PUBLIC health ,HEALTH literacy ,DESCRIPTIVE statistics ,HEALTH ,INFORMATION resources ,RESEARCH funding ,HEALTH equity ,ADULT education workshops - Abstract
Background: Receiving and accessing care after a diagnosis of dementia, both for the person and their carer, are fraught with inequalities. The aim of this public engagement activity was to co‐produce a board game about dementia inequalities to facilitate learning, dialogue and educate about different barriers, and facilitators, to diagnosis and care and to test the game's impact on dementia knowledge with the general public. Methods: Two virtual and two face‐to‐face workshops with people with dementia, unpaid carers, health and social care professionals and Third Sector representatives were held between October 2022 and June 2023. Virtual workshops involved discussions of inequalities and how a board game may feature inequalities. The first face‐to‐face workshop was split into the same activities, aided by outcomes from workshops 1 and 2. Workshop 4 attendees tested the prototype. The impact of the game on knowledge about dementia and inequalities was tested at a game play workshop in October 2023. Results: Forty stakeholders attended four workshops. Workshops provided step‐by‐step thoughts on how the game could be designed or modified. The final game, prototype tested in workshop 4, consists of a one‐sided, two‐half board depicting the prediagnosis process (left half) and postdiagnosis process (right half). Fifty‐two members of the general public participated in the game play workshop, which led to significant improvements in knowledge about dementia (p <.001) and inequalities (p <.001). Discussion: The game can be used to improve knowledge about dementia inequalities for health and social care professionals, carers, people living with dementia, decision makers and the general public. Patient or Public Contribution: This engagement activity fully involved people with dementia, unpaid carers, health and social care professionals and Third Sector representatives throughout, with two unpaid carers as public advisers on the team. [ABSTRACT FROM AUTHOR]
- Published
- 2024
- Full Text
- View/download PDF
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