3,635 results
Search Results
2. Evaluation of Public Involvement in Doctoral Research Using a Four‐Dimensional Theoretical Framework.
- Author
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Teodorowski, Piotr, Tahir, Naheed, and Ahmed, Saiqa
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PATIENT selection ,SOCIAL media ,RESEARCH funding ,HUMAN research subjects ,INTERVIEWING ,DATA analytics ,COMMUNITIES ,EXPERIMENTAL design ,CONCEPTUAL structures ,MEDICAL research ,RESEARCH methodology ,ORGANIZATIONAL change ,PATIENT participation ,COVID-19 pandemic - Abstract
Background: Working together and co‐production with public advisors have become popular among health researchers. This practice extends to doctoral researchers who involve public advisors at different stages of their research or throughout their doctoral journey. Objective: A doctoral researcher and two public advisors jointly evaluated public involvement in doctoral research. Methods: Using the established public involvement evaluation framework by Gibson and colleagues, public advisors and a doctoral researcher mapped and evaluated their experiences of public involvement in doctoral research. The four‐dimensional framework allowed the authors to reflect on (1) the strength of the public voice, (2) the number of ways in which public advisors had an opportunity to get involved, (3) whether the discussion was about the public or organisation's (doctoral researcher, university or funder) concerns and (4) if the organisation changed or resisted feedback. Results are presented in a diagrammatic and narrative way. Results: Public advisors saw themselves as having a stronger voice in doctoral research than the doctoral researcher perceived. All agreed that there existed multiple ways for public advisors to be involved. Public advisors' feedback was taken on board, but it was also limited due to restrictions of what the doctoral programme allowed. Conclusion: Public advisors ensured that the doctoral research was more relevant to the public. The ongoing involvement also shaped the doctoral researcher's thinking and views. Patient and Public Involvement: Two public advisors were involved throughout the 3 years of this doctoral research. They co‐evaluated this involvement and are co‐authors of this paper. [ABSTRACT FROM AUTHOR]
- Published
- 2024
- Full Text
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3. Identities on paper: Constructing lives for people with intellectual disabilities in life story books.
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Moya, Helen
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LIFE , *IDENTITY (Psychology) , *DISABILITIES , *INTERVIEWING , *PERSONALITY - Abstract
This paper examines how life story books were used in two care settings in the UK for people with complex support needs. The context of the research was the transition of six people from a long stay hospital to a community home. Discourse analysis was used to analyse talk and texts in the care settings including staff interviews, meetings and the written text in the life story books themselves. Three uses of the books are highlighted in the analysis. They were used as a resource for: getting to know the person; defining the person; and displaying personality and uniqueness. Mutual identities of the various participants were constantly changing with reference to the life story books. It is suggested that the books encourage acceptance in the care relationships. The analysis demonstrated that despite the different uses of the life story books, highlighted by the care staff, there is an underlying assumption that what is written in the books is a direct representation of the person. It appears that once this type of information is committed to paper the identity of the person becomes reified. [ABSTRACT FROM AUTHOR]
- Published
- 2009
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4. Eliminating persistent racism from the workplace.
- Author
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Richardson, Jo
- Subjects
PREVENTION of racism ,CORPORATE culture ,EMPLOYEES ,WORK ,RISK assessment ,QUALITATIVE research ,PREJUDICES ,FOCUS groups ,CONVERSATION ,EXECUTIVES ,WORK environment ,INTERVIEWING ,QUESTIONNAIRES ,LEARNING ,CONFIDENCE ,DECISION making ,BLACK British ,COGNITION disorders ,BLACK Africans ,TELEPHONES ,EXPERIENTIAL learning ,MANAGEMENT ,EMPLOYMENT - Abstract
Purpose: The purpose of this paper is to share learning about practical steps that can be taken to eliminate persistent racism from the workplace, including racism by people who have cognitive impairments who do not understand the impact of their behaviours. Design/methodology/approach: This paper is informed by qualitative research. An independent researcher was commissioned to recruit 45 black British, black African and black Caribbean women living in Norfolk and working for a range of employers. Parameters were agreed in advance (aims, consent, data protection). A list of questions was provided to the researcher. The questions covered experiences of prejudice and discrimination. Data collection included face to face/online/telephone interviews, focus groups and questionnaires. The researcher recorded the women's views and compiled them in a findings report. The report was shared with the women to confirm that their views had been recorded accurately. The author has also convened conversations with over 100 professionals representing providers of public services, including social and domiciliary care. Findings: The author identified that it will be impossible for employers to eliminate persistent racism from their workplaces until all managers consistently and diligently address every report of racism effectively, in line with the steps set out in this paper. The purpose is to establish, over time, a workplace culture where racism is never tolerated or allowed to persist, and workers and managers learn – and become more confident – to recognise, address and eliminate racism at work. Until this is embedded, racism affecting workers will continue to go unchecked and unacknowledged in the workplace. Research limitations/implications: The data gathered to inform this paper (specifically the research commissioned and described in this abstract, in addition to other data, such as conversations convened with professionals) is qualitative data. It cannot be assumed that the experiences of the people interviewed reflect the experiences of all people. However, the voices of participants have highlighted issues to inform future planning. Practical implications: The author must be clear that, so far there has been no definitive solution to persistent racism in the workplace. The learning so far is being shared with the hope that this assists others with developing strategies to eliminate persistent racism. Social implications: Workplaces across the UK are committed to eradicating racism. However, the rate of change is glacial. This research paper shares learning about how to address this, to increase the pace of change, to begin to genuinely eliminate persistent racism from the workplace. Originality/value: To the author's knowledge, the learning from this research is original and not replicated elsewhere. [ABSTRACT FROM AUTHOR]
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- 2024
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5. Pregnant racialised migrants and the ubiquitous border: The hostile environment as a technology of stratified reproduction.
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LONERGAN, GWYNETH
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IMMIGRATION law ,CHILDBIRTH & psychology ,ATTITUDES toward pregnancy ,ECOLOGY ,GOVERNMENT policy ,MATERNAL health services ,FOCUS groups ,RESEARCH funding ,SEX distribution ,INTERVIEWING ,PREGNANT women ,CITIZENSHIP ,RACISM ,EXPERIENCE ,THEMATIC analysis ,MIGRANT labor ,HUMAN reproduction ,RESEARCH methodology ,HOUSING ,PSYCHOSOCIAL factors ,SOCIAL classes ,HEALTH care rationing - Abstract
This article explores the impact of the 'hostile environment' on racialised migrant women's experiences of pregnancy and childbirth in England, arguing that the 'hostile environment' functions as a technology of 'stratified reproduction.' First coined by Shellee Colen, the concept of stratified reproduction describes the dynamic by which some individuals and groups may be supported in their reproductive activities, while others are disempowered and discouraged. This paper locates the stratified reproduction produced by the 'hostile environment' as intertwined with wider gendered and racialised discourses around British citizenship which have been 'designed to fail' racialised residents of the UK. Drawing on interviews with racialised migrant mothers in the north of England, this paper analyses how the proliferation and intensification of immigration controls interacts with gender, race, class, and other social regimes to differentially allocate the resources necessary for a safe and healthy pregnancy and childbirth, and how this is experienced materially by pregnant migrants. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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6. Expanding student nurse placement activity in Welsh care homes: An evaluation study.
- Author
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Williams, Sharon, Caley, Lynne, Kingdom‐Mills, Sarah, Cassidy, Simon, and Jones, Lesley
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HOME care services ,SCHOOL environment ,QUALITATIVE research ,INTERNSHIP programs ,INTERVIEWING ,GOVERNMENT agencies ,NURSING education ,NURSING care facilities ,THEMATIC analysis ,RESEARCH methodology ,COMMUNICATION ,PROFESSIONAL employee training ,STUDENT attitudes ,STAKEHOLDER analysis ,NURSING students ,RESIDENTIAL care - Abstract
Aim: Expanding and sustaining student nurse placements outside of the acute sector is a universal challenge. This paper aims to evaluate the Care Home Education Facilitator Role introduced in one area of Wales, United Kingdom, and to report on the outcomes achieved from this novel role. Methods: Semi‐structured interviews were undertaken with key stakeholders including the Care Home Education Facilitator postholder leading the pilot, care home managers, higher education institutions' placement managers/coordinators, student nurses and national health service staff. Results: Five key areas were identified, which included timing of introducing the post and establishing a clear rationale and understanding of the intention of the role. The benefits, challenges and suggested improvements to the Care Home Education Facilitator initiative are provided. Conclusion: Introducing the role of the Care Home Education Facilitator to work closely with key stakeholders resulted in increased placements for student nurses, but investing time in developing relationships with these stakeholders was critical to the success of the role. Summary statement: What is already known about this topic? There is a universal shortage of clinical placements for nursing students, particularly within a care home setting.The number of studies exploring how we might grow the number of nurses needed in this setting is limited. What this paper adds? This study evaluated a novel initiative introduced in South Wales, United Kingdom, that focuses on the development of nursing placements in the care home setting.Engaging with stakeholders involved in the development and implementation of the Care Home Education Facilitator initiative, a roadmap was provided to illustrate the stepped approach required to support an active care home placement including key governance arrangements. The implications of this paper: For those involved in identifying and developing student placements, this study provides valuable insight to a role that can help increase student numbers in a care setting often overlooked.It identifies viable career options for nurses at the point of registration.The role assists with widening networks for the care homes across health and social care sectors. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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7. "You have to work...but you can't!": Contradictions of the Active Labour Market Policies for Refugees and Asylum Seekers in the UK.
- Author
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CALO, FRANCESCA, MONTGOMERY, TOM, and BAGLIONI, SIMONE
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POLICY sciences ,GOVERNMENT policy ,QUALITATIVE research ,FOCUS groups ,RESEARCH funding ,PSYCHOLOGY of refugees ,INTERVIEWING ,DESCRIPTIVE statistics ,LABOR market ,DISCOURSE analysis ,EXPERIENCE ,THEORY of knowledge ,PRACTICAL politics ,STAKEHOLDER analysis ,SOCIAL support ,DISCRIMINATION (Sociology) ,SOCIAL problems - Abstract
The discourse of deservingness has been mobilised against certain groups in the UK society navigating UK labour markets, among them refugees and asylum seekers. These discourses, leading to the stigmatisation of the unemployed are coupled with an emphasis on the importance of individuals taking responsibility to develop their 'employability'. Little attention has been paid to scrutinise the contrast between the deservingness rhetoric and policy making with the actual conditions newcomers, and in particular refugees and asylum seekers, are confronted with when seeking employment. Our paper fills such a gap by indicating key contradictions at the heart of labour market integration in the UK. On the one hand, the emphasis on deservingness is coupled with policy discourses that construct an environment shaped by welfare and labour market chauvinism. On the other hand, the policy architecture is fundamentally flawed in a number of ways in terms of the support mechanisms necessary to ensure that newcomers can successfully integrate into the labour market. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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8. A community health worker led approach to cardiovascular disease prevention in the UK--SPICES-Sussex (scaling-up packages of interventions for cardiovascular disease prevention in selected sites in Europe and Sub-saharan Africa): an implementation research project
- Author
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Grice-Jackson, Thomas, Rogers, Imogen, Ford, Elizabeth, Dickinson, Robert, Frere-Smith, Kat, Goddard, Katie, Silver, Linda, Topha, Catherine, Nahar, Papreen, Musinguzi, Geofrey, Bastiaens, Hilde, and Van Marwijk, Harm
- Subjects
CARDIOVASCULAR disease prevention ,RISK assessment ,HOLISTIC medicine ,PATIENT selection ,MOTIVATIONAL interviewing ,RESEARCH funding ,NATURAL foods ,DATA analysis ,FOCUS groups ,SELF-efficacy ,HUMAN services programs ,QUESTIONNAIRES ,HUMAN research subjects ,STATISTICAL sampling ,INTERVIEWING ,RESPONSIBILITY ,EVALUATION of human services programs ,CARDIOVASCULAR diseases risk factors ,DESCRIPTIVE statistics ,REFLECTION (Philosophy) ,PATIENT-centered care ,THEMATIC analysis ,PRE-tests & post-tests ,INFORMATION needs ,MOTIVATION (Psychology) ,RESEARCH methodology ,CONCEPTUAL structures ,HEALTH behavior ,ACTION research ,FOOD habits ,STATISTICS ,COMMUNITY health workers ,STAKEHOLDER analysis ,INDIVIDUALIZED medicine ,MEDICAL screening ,DATA analysis software ,PSYCHOSOCIAL factors ,PREVENTIVE health services ,PATIENT participation ,DIET ,PHYSICAL activity - Abstract
Background: This paper describes a UK-based study, SPICES-Sussex, which aimed to co-produce and implement a community-based cardiovascular disease (CVD) risk assessment and reduction intervention to support underserved populations at moderate risk of CVD. The objectives were to enhance stakeholder engagement; to implement the intervention in four research sites and to evaluate the use of Voluntary and Community and Social Enterprises (VCSE) and Community Health Worker (CHW) partnerships in health interventions. Methods: A type three hybrid implementation study design was used with mixed methods data. This paper represents the process evaluation of the implementation of the SPICES-Sussex Project. The evaluation was conducted using the RE-AIM framework. Results: Reach: 381 individuals took part in the risk profiling questionnaire and forty-one women, and five men participated in the coaching intervention. Effectiveness: quantitative results from intervention participants showed significant improvements in CVD behavioural risk factors across several measures. Qualitative data indicated high acceptability, with the holistic, personalised, and person-centred approach being valued by participants. Adoption: 50% of VCSEs approached took part in the SPICES programme, The CHWs felt empowered to deliver high-quality and mutually beneficial coaching within a strong project infrastructure that made use of VCSE partnerships. Implementation: Co-design meetings resulted in local adaptations being made to the intervention. 29 (63%) of participants completed the intervention. Practical issues concerned how to embed CHWs in a health service context, how to keep engaging participants, and tensions between research integrity and the needs and expectations of those in the voluntary sector. Maintenance: Several VCSEs expressed an interest in continuing the intervention after the end of the SPICES programme. Conclusion: Community-engagement approaches have the potential to have positively impact the health and wellbeing of certain groups. Furthermore, VCSEs and CHWs represent a significant untapped resource in the UK. However, more work needs to be done to understand how links between the sectors can be bridged to deliver evidence-based effective alternative preventative healthcare. Reaching vulnerable populations remains a challenge despite partnerships with VCSEs which are embedded in the community. By showing what went well and what did not, this project can guide future work in community engagement for health. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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9. Link Workers in Social Prescribing for Young People Work: A Case Study From Sheffield Futures.
- Author
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FARINA, ISABEL, BERTOTTI, MARCELLO, MASELLA, CRISTINA, and SANGIORGI, DANIELA
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RISK assessment ,POLICY sciences ,OCCUPATIONAL roles ,MENTAL health ,PRIMARY health care ,INTERVIEWING ,DESCRIPTIVE statistics ,ATTITUDES of medical personnel ,RESEARCH methodology ,COMMUNITY health workers ,PUBLIC welfare ,CASE studies ,MEDICAL needs assessment ,PSYCHOSOCIAL factors ,SOCIAL participation ,WELL-being - Abstract
Introduction: Social Prescribing has an established recognition regarding the benefits provided to the health-related social needs of adults, but little is known about how the intervention addresses young people's needs. There is optimism regarding the central role of two core mechanisms that allows social prescribing to be effective, such as the empathetic role of Link Workers and the connection with community resources. This paper aims to describe the role played by Link Workers working a Social Prescribing intervention targeting young people. Description: This paper adopts a case study methodology to describe the role of Link Workers addressing young people's needs and implementing Social Prescribing scheme in Sheffield (UK). Data were collected through semi-structured interviews with four of the seven link workers of one organisation based in Sheffield. Data were analysed through an inductive approach for emerging themes. Discussion: We provided a description of the profiles and background of Link Workers and described the three models of referral pathways into the intervention. The paper also shows how Link Workers identify young people's needs and how they connect with the community. Conclusion: Based on the insights and the internationally accepted definition of Social Prescribing, we provide a visual representation of the Social Prescribing model and discuss challenges. The paper highlights lessons learned and future directions regarding the role of Link Workers from the case study. [ABSTRACT FROM AUTHOR]
- Published
- 2024
- Full Text
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10. My dear diaries: Following, valuing and reflecting on moments with research materials.
- Author
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White, Lauren
- Subjects
BEHAVIORAL research ,IRRITABLE colon ,FEMINISM ,INTERVIEWING ,ACTIVITIES of daily living ,DIARY (Literary form) ,RESEARCH ethics ,FIELD notes (Science) ,SOUND recordings ,INTERPERSONAL relations ,RESEARCH funding ,EMOTIONS ,REFLECTION (Philosophy) - Abstract
This article explores how solicited paper diaries, and the accompanying materials, are carefully handled over the course of one research project. It foregrounds the value of attending to mundane moments with research materials, by tracing tangible material encounters together with intimate fieldnote reflections. Through drawing upon theories of materiality with feminist and relational ethics of care, this article centralises paper diaries as a key mediator of relationships and care within research. It considers the micro processes of choosing diaries, posting them, receiving and storing them and tracing the emotionally charged moments as a researcher in everyday research situations. Such reflections, from the perspective of the researcher, look to offer insights into research relationalities and care. It argues that these momentary fieldwork reflections extend understandings of material methodologies by emphasising relational intimacies as a researcher and connects material and sensory understandings with feminist ethics of care and researcher reciprocities. [ABSTRACT FROM AUTHOR]
- Published
- 2023
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11. Outcomes and well-being part 2: a comparative longitudinal study of two models of homecare delivery and their impact upon the older person self-reported subjective well-being. A qualitative follow up study paper.
- Author
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Gethin-Jones, Stephen
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HOME care services ,INTERVIEWING ,LONGITUDINAL method ,RESEARCH methodology ,EVALUATION of medical care ,PATIENT-professional relations ,SELF-evaluation ,SOCIAL isolation ,TIME ,QUALITATIVE research ,WELL-being ,THEMATIC analysis ,REPEATED measures design ,PATIENT-centered care - Abstract
Purpose – This paper aims to follow up on a previous quantitative research project which established that outcome-focussed care appeared to be associated with an increase in the individuals' subjective well-being. The purpose of this paper is to establish why the intervention enabled this. Design/methodology/approach – The study utilised a qualitative approach to gather the subjective experience of the individual service users. The sample consisted of 20 service users, who were subject of two semi-structured interviews; one interview at the start of the intervention and one at the six month stage. The data were then analysed under core themes raised by the service user in these interviews. The sample was divided into two, with one group receiving the outcome-focussed model of care and the other group receiving the traditional time focussed care. Findings – The research established that service users' subjective well-being improved due to the ability of outcome-focussed care to provide consistency, flexibility and most importantly the ability of the service user to form a relationship with the homecare workers providing their care. Practical implications – This paper will assist professionals to understand why outcome-focus care has a profound impact upon service users' subjective well-being as opposed to the existing task focussed care. Originality/value – This and the previous paper provide an insight into how different processes and models of intervention impact upon the subjective well-being of socially isolated older people. [ABSTRACT FROM AUTHOR]
- Published
- 2012
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12. Trust and temporality in participatory research.
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Armstrong, Andrea, Flynn, Emma, Salt, Karen, Briggs, Jo, Clarke, Rachel, Vines, John, and MacDonald, Alistair
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MEETINGS ,PROFESSIONAL practice ,MINORITIES ,TIME ,RESEARCH methodology ,DIGITAL technology ,SOCIAL media ,SOCIAL justice ,INTERVIEWING ,ACTION research ,RESEARCH funding ,INTERPERSONAL relations ,SOUND recordings ,COMMUNICATION ,THEMATIC analysis ,POVERTY ,TRUST ,ADULT education workshops - Abstract
This paper argues that trust cannot be taken for granted in long-term participatory research and promotes greater consideration to conceptualizing the trusting process as fluid and fragile. This awareness by researchers can reveal to them how the passing of time shapes and reshapes the nature of trusting relationships and their constant negotiation and re-negotiation. The paper draws together literature from different disciplines on the themes of trust, temporality and participatory research and outcomes from interviews and workshops undertaken for The Trust Map project to focus on two key moments that reveal the fragility of trust. These are the subtlety of disruption and trust on trial and trust at a distance. We discuss how trust was built over time through processes of interaction that were continually tested, incremental and participatory. [ABSTRACT FROM AUTHOR]
- Published
- 2023
- Full Text
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13. Care precarity among older British migrants in Spain.
- Author
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Hall, Kelly
- Subjects
FRAIL elderly ,HEALTH services accessibility ,SOCIAL workers ,EMIGRATION & immigration ,INTERVIEWING ,UNCERTAINTY ,QUALITATIVE research ,RESEARCH funding ,RETIREMENT ,FAMILY relations ,STATISTICAL sampling ,MEDICAL needs assessment - Abstract
Northern European international retirement migrants are often viewed as affluent and use migration as a route to a better quality of life. However, as these migrants transition into the 'fourth age', the onset of age-related illnesses, frailty and care needs can lead to increased levels of risk and insecurity. Through 34 qualitative interviews with older British migrants in Spain, the paper explores how these migrants access and experience care as they age. It draws on a lens of precarity that allows an understanding not only of individual care needs, but of the political, economic and social context in which they are situated, including social protections and public safety nets. The findings suggest that distant family relationships and limited access to formal social protection can both create and exacerbate precarity. These older migrants therefore develop different strategies to access care that include drawing on informal relationships and voluntary organisations within the British community in Spain. The paper contributes to understanding how international retirement migrants manage their care needs, and theoretically extends our understanding of how the intersection of old age, migration and care can create new forms of precarity. [ABSTRACT FROM AUTHOR]
- Published
- 2023
- Full Text
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14. Pandemic policymaking affecting older adult volunteers during and after the COVID-19 public health crisis in the four nations of the UK.
- Author
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Grotz, Jurgen, Armstrong, Lindsay, Edwards, Heather, Jones, Aileen, Locke, Michael, Smith, Laurel, Speed, Ewen, and Birt, Linda
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DISEASE risk factors ,PREVENTION of infectious disease transmission ,MORTALITY risk factors ,POLICY sciences ,NATIONAL health services ,EXECUTIVES ,RESEARCH funding ,HEALTH policy ,MEDICAL care ,SOCIAL services ,STATISTICAL sampling ,INTERVIEWING ,DECISION making ,REFLECTION (Philosophy) ,COVID-19 vaccines ,SOCIAL change ,SOCIAL attitudes ,STAY-at-home orders ,DISCOURSE analysis ,TELEMEDICINE ,VOLUNTEERS ,AGING ,ORGANIZATIONAL change ,PUBLIC health ,COMPARATIVE studies ,PRACTICAL politics ,HEALTH promotion ,SOCIAL support ,COVID-19 pandemic ,PSYCHOSOCIAL factors ,OLD age - Abstract
Purpose: This study aims to critically examine the effects of COVID-19 social discourses and policy decisions specifically on older adult volunteers in the UK, comparing the responses and their effects in England, Scotland, Wales and Northern Ireland, providing perspectives on effects of policy changes designed to reduce risk of infection as a result of COVID-19, specifically on volunteer involvement of and for older adults, and understand, from the perspectives of volunteer managers, how COVID-19 restrictions had impacted older people's volunteering and situating this within statutory public health policies. Design/methodology/approach: The study uses a critical discourse approach to explore, compare and contrast accounts of volunteering of and for older people in policy, and then compare the discourses within policy documents with the discourses in personal accounts of volunteering in health and social care settings in the four nations of the UK. This paper is co-produced in collaboration with co-authors who have direct experience with volunteer involvement responses and their impact on older people. Findings: The prevailing overall policy approach during the pandemic was that risk of morbidity and mortality to older people was too high to permit them to participate in volunteering activities. Disenfranchising of older people, as exemplified in volunteer involvement, was remarkably uniform across the four nations of the UK. However, the authors find that despite, rather than because of policy changes, older volunteers, as part of, or with the help of, volunteer involving organisations, are taking time to think and to reconsider their involvement and are renewing their volunteer involvement with associated health benefits. Research limitations/implications: Working with participants as co-authors helps to ensure the credibility of results in that there was agreement in the themes identified and the conclusions. A limitation of this study lies in the sampling method, as a convenience sample was used and there is only representation from one organisation in each of the four nations. Originality/value: The paper combines existing knowledge about volunteer involvement of and for older adults. [ABSTRACT FROM AUTHOR]
- Published
- 2024
- Full Text
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15. Cultural Myths, Superstitions, and Stigma Surrounding Dementia in a UK Bangladeshi Community.
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Hussain, Nazmul, Clark, Andrew, and Innes, Anthea
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DEMENTIA risk factors ,CAREGIVER attitudes ,RESEARCH methodology ,STAKEHOLDER analysis ,SOCIAL stigma ,INTERVIEWING ,DEMENTIA patients ,RISK assessment ,QUALITATIVE research ,HEALTH literacy ,CULTURAL competence ,SUPERSTITION ,DESCRIPTIVE statistics ,RESEARCH funding ,BANGLADESHIS - Abstract
The last three census data highlighted that UK Bangladeshi communities have the worst health outcomes. This includes a higher risk of type two diabetes and heart diseases; both are risk factors for developing vascular dementia. However, little is known about Bangladeshi community members' understandings of dementia, including cultural myths. This paper focuses on the cultural myths, superstitions, and stigma surrounding dementia in an English Bangladeshi community from the direct experiences of people living with dementia, their caregivers, and the views of dementia service providers/stakeholders. This qualitative research was undertaken with three distinct participant groups using semistructured interviews (n = 25), who were recruited from community settings. The first and second participant groups explored the experiences of people with dementia (n = 10) and their family caregivers (n = 10). The third group examined stakeholders'/service providers' views (n = 5). Interviews were recorded digitally and transcribed verbatim. Findings were reached using an interpretive approach, emphasising the sense people make in their own lives and experiences and how they frame and understand dementia. The study revealed that participants with dementia and their caregivers have "alternative" knowledge about dementia and do not necessarily understand dementia in a Westernised scientific/biomedical context. Misconceptions about dementia and belief in various myths and superstitions can lead people to go to spiritual healers or practice traditional remedies rather than to their GPs, delaying their dementia diagnosis. This paper concludes that there is a lack of awareness among the Bangladeshi participants and a need for targeted awareness about dementia to help dispel cultural myths and combat the stigma surrounding dementia within the Bangladeshi community. [ABSTRACT FROM AUTHOR]
- Published
- 2024
- Full Text
- View/download PDF
16. The methodological challenges faced when conducting hydration research in UK care homes.
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Hodgson, Philip, Cook, Glenda, and Johnson, Amy
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MEDICAL protocols ,PATIENT selection ,DRINKING (Physiology) ,DATA analysis ,CLUSTER analysis (Statistics) ,FLUID therapy ,GERIATRICS ,STATISTICAL sampling ,INTERVIEWING ,PILOT projects ,HUMAN research subjects ,QUESTIONNAIRES ,RANDOMIZED controlled trials ,DESCRIPTIVE statistics ,HYDRATION ,NURSING research ,MEDICAL research ,RESEARCH methodology ,WATER-electrolyte balance (Physiology) ,NURSING care facility administration ,DEMENTIA ,DEMENTIA patients - Abstract
Why you should read this article: • UK care homes are an important example of a complex environment where research is essential but faces multiple challenges in terms of rigour and methodology • This paper offers a variety of important methodological strategies to identify and address challenges that could impact findings and the ability to carry out research • It highlights the importance of taking a critical stance with all elements of the research process and illustrates the need to identify and mitigate challenges when conducting research in complex environments. Background: The evidence base for hydration practice in care homes is underdeveloped. High-quality research is therefore needed to determine what practices support older people with dementia in drinking sufficient fluid. However, methodological developments are needed to be able to do this. Aim: To highlight the methodological issues researchers encountered during a feasibility cluster, randomised controlled trial of ThinkDrink, a hydration care guide for people with dementia living in UK care homes. Discussion: This is a challenging area because of the complexity of recruitment, participation and data collection in care homes. Researchers must pay extra attention to rigour and quality in the design of their studies. There may be multiple challenges, so various strategies may be required. Conclusion: It is important that researchers continue to reflect on rigorous approaches to develop evidence in a crucial area of care, despite these challenges. Implications for practice: Researchers working in complex environments face a variety of challenges to complete methodologically rigorous research. It is important for researchers to be critical of research processes and data, to mitigate and overcome these challenges. [ABSTRACT FROM AUTHOR]
- Published
- 2024
- Full Text
- View/download PDF
17. How did student district nurses feel during the COVID-19 pandemic? A qualitative study.
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Marshall, Helen and Sprung, Sally
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CROSS infection prevention ,EDUCATION of nurse practitioners ,NURSES ,TEAMS in the workplace ,COMMUNITY health nursing ,QUALITATIVE research ,FOCUS groups ,COMMUNITY health nurses ,OCCUPATIONAL roles ,ADULT care services ,INTERVIEWING ,HOSPITAL nursing staff ,STATISTICAL sampling ,AFFINITY groups ,ANXIETY ,UNCERTAINTY ,STAY-at-home orders ,EXPERIENCE ,STUDENTS ,CONTINUING education of nurses ,NURSE practitioners ,THEMATIC analysis ,RESEARCH methodology ,STUDENT attitudes ,PHENOMENOLOGY ,COVID-19 pandemic ,COVID-19 ,INDUSTRIAL safety - Abstract
Background: The COVID-19 pandemic placed a huge strain on healthcare services around the world, including community services. Students also faced substantial disturbance to educational programmes. Student district nurses are usually employed members of staff and can be recalled to the workforce, whereas pre-registration students cannot. Aims: This paper explores the feelings and experiences of student district nurses during the first UK national lockdown of the COVID-19 pandemic. An interpretative phenomenological approach was taken. Method: A semi structured 1:1 interview and focus group was held via zoom in July 2020. A total of eight student district nurses, who were all registered adult nurses, took part. Data was analysed using the Braun and Clarke model to identify themes. Results: The findings related to their experience of being a community adult registered nurse on the frontline, while also being a student district nurse. Three themes were identified from the analysis: anxiety and uncertainty, management of risk and teamwork. Conclusion: This study highlights the contribution that community nurses made in the clinical response to the COVID-19 pandemic. It adds to a paucity of literature available from this clinical setting and specifically from the viewpoint of a student district nurse. There is much written on the strains on hospital care, but it should be remembered that district nursing is the service that never shuts its doors because it has reached capacity. This study found that a lack of communication and uncertainty about their future as students contributed to heightened stress and anxiety. Teamwork and camaraderie are a vital aspect of any team and one that can support resilience in times of heightened stress. A lack of face-to-face interaction can lead to team members feeling isolated. Digital technology can be used to reduce this feeling when possible. [ABSTRACT FROM AUTHOR]
- Published
- 2024
- Full Text
- View/download PDF
18. A qualitative exploration of the strategies used by patients and nurses when navigating a standardised care programme.
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Roche, Dominic and Jones, Aled
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OCCUPATIONAL roles ,RESEARCH ,EVALUATION of human services programs ,PATIENT participation ,RESEARCH methodology ,PATIENT-centered care ,POSTOPERATIVE care ,INTERVIEWING ,MEDICAL protocols ,CONCEPTUAL structures ,NURSES ,HOSPITAL nursing staff ,RESEARCH funding ,PATIENT care ,ENHANCED recovery after surgery protocol ,THEMATIC analysis ,PATIENT-professional relations ,REHABILITATION ,LITERATURE - Abstract
The main aim of this paper is to explore and discuss the interesting juxtaposition of patient involvement within a standardised Enhanced Recovery After Surgery care programme (ERAS). We address our aim by examining the work and strategies of nursing staff caring for patients during postoperative recovery from surgery, exploring how these two potentially competing priorities might effectively co‐exist within a hospital ward. This was a qualitative exploratory study, with data generated through 42 semi‐structured interviews with patients and nurses who had taken part in an ERAS programme in one of three hospital wards in the United Kingdom, adopting a reflexive thematic approach to data analysis. We shine a light on the work undertaken by patients and nurses during the navigation of postoperative recovery, identifying strategies of collaboration and negotiation during this journey. Furthermore, we also identify and consider patients engaged in peer‐peer support during postoperative recovery. This paper adds to the existing literature and current ways of thinking in relation to the quest for standardised, clinically effective care balanced with the aspirations for individualised, patient‐centred care. This paper also helps inform thinking about the use of care pathways in relation to service delivery, considering how best to initiate and deploy best practice aimed at safe and effective postoperative recovery. [ABSTRACT FROM AUTHOR]
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- 2023
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19. Attributes of communication aids as described by those supporting children and young people with AAC.
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Judge, Simon, Murray, Janice, Lynch, Yvonne, Meredith, Stuart, Moulam, Liz, Randall, Nicola, Whittle, Helen, and Goldbart, Juliet
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COMPUTER software ,FACILITATED communication ,FOCUS groups ,INTERVIEWING ,PHENOMENOLOGY ,COMMUNICATION devices for people with disabilities ,RESEARCH funding ,DECISION making ,VOCABULARY ,THEMATIC analysis ,SECONDARY analysis - Abstract
Background: Those supporting children and young people who use augmentative and alternative communication (AAC) contribute to ongoing complex decision‐making about communication aid selection and support. Little is known about how these decisions are made in practice and how attributes of the communication aid are described or considered. Aims: To understand how communication aid attributes were described by those involved in AAC recommendations and support for children and young people, and how these attributes were described as impacting on AAC use. Methods & Procedures: A secondary qualitative analysis was completed of interview and focus group data from 91 participants involved in the support of 22 children and young people. Attributes of communication aids described by participants were extracted as themes and this paper reports a descriptive summary of the identified software (non‐hardware) attributes. Main Contribution: Decisions were described in terms of comparisons between commercially available pre‐existing vocabulary packages. Attributes related to vocabulary, graphic representation, consistency and intuitiveness of design, and ease of editing were identified. Developmental staging of vocabularies, core and fringe vocabulary, and vocabulary personalization were attributes that were described as being explicitly considered in decisions. The potential impact of graphic symbol choice did not seem to be considered strongly. The physical and social environment was described as the predominant factor driving the choice of a number of attributes. Conclusions & Implications: Specific attributes that appear to be established in decision‐making in these data have limited empirical research literature. Terms used in the literature to describe communication aid attributes were not observed in these data. Practice‐based evidence does not appear to be supported by the available research literature and these findings highlight several areas where empirical research is needed in order to provide a robust basis for practice. What This Paper Adds: What is already known on the subject: Communication aid attributes are viewed as a key consideration by practitioners and family members in AAC decision‐making; however, there are few empirical studies investigating language and communication attributes of communication aids. It is important to understand how those involved in AAC recommendations and support view communication aid attributes and the impact different attributes have. What this paper adds to existing knowledge: This study provides a picture of how communication aids are described by practitioners and family members involved in AAC support of children and young people. A range of attributes is identified from the analysis of these qualitative data as well as information about how participants perceive these attributes as informing decisions. What are the potential or actual clinical implications of this work?: This study provides a basis on which practitioners and others involved in AAC support for children and young people can review and reflect on their own practice and so improve the outcomes of AAC decisions. The study provides a list of attributes that appear to be considered in practice and so also provides a resource for researchers looking to ensure there is a strong empirical basis for AAC decisions. [ABSTRACT FROM AUTHOR]
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- 2023
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20. Including the values of UK ethnic minority communities in policies to improve physical activity and healthy eating.
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Gafari, Olatundun, Stokes, Maria, Agyapong-Badu, Sandra, Alwan, Nisreen A., Calder, Philip C., McDonough, Suzanne, Tully, Mark A., and Barker, Mary
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FAMILIES & psychology ,ENVIRONMENTAL health ,RISK assessment ,HEALTH services accessibility ,COMMUNITY health services ,QUALITATIVE research ,RESEARCH funding ,MENTAL health ,LABOR productivity ,HEALTH policy ,SOCIOECONOMIC factors ,INTERVIEWING ,WORK environment ,STATISTICAL sampling ,REGULATION of body weight ,PSYCHOLOGICAL adaptation ,POPULATION geography ,COVID-19 vaccines ,DESCRIPTIVE statistics ,SOCIAL attitudes ,THEMATIC analysis ,RACISM ,NON-communicable diseases ,HEALTH behavior ,FOOD habits ,RESEARCH methodology ,COMMUNICATION ,MINORITIES ,HEALTH promotion ,COMPARATIVE studies ,PHYSICAL activity ,CULTURAL pluralism ,ACCESS to information ,MEDICAL care costs ,NUTRITION ,DIET ,DISEASE risk factors - Abstract
Physical activity and healthy eating are important for physical and mental health, yet long-standing inequalities constrain the ability of ethnic minorities in the United Kingdom (UK) to adopt these behaviours. Programmes aimed to improve these behaviours have also often not been engaged with by these communities. This study therefore aimed to: (1) identify the values underlying the physical activity and healthy eating behaviours of UK ethnic minorities and (2) explore how structural, socio-economic and environmental factors interact with these values to influence their physical activity and healthy eating behaviours. The study adopted a relativist ontological and subjectivist epistemological philosophical assumption. Qualitative interviews were used to address research objectives. A total of 10 group and five individual interviews were conducted with 41 participants. All participants were from an ethnic minority background (Black, Asian or Mixed according to the UK Office for National Statistics classification), recruited purposively and aged between 18 and 86 years and were living in England and Wales. Data were analysed using inductive thematic analysis. Community engagement was embedded throughout the study. We found that culture and family, community and social life, and health are important values underlying the physical activity and healthy eating behaviours of UK ethnic minority communities. External factors, including racism and access (geographical, social and economic), interact with these values to drive health behaviours. Using an illustrative guide, we conclude the paper with policy and practice recommendations on how public health programmes on physical activity and healthy eating can be aligned with these values to ensure relevance for ethnic minority communities. [ABSTRACT FROM AUTHOR]
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- 2024
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21. 'There was nothing, just absolute darkness': Understanding the needs of those caring for children and young people with complex neurodisability in a diverse UK context: A qualitative exploration in the ENCOMPASS study.
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Prest, Kirsten, Wilson, Emma, Vassiliadou, Io, Ali, Sayeeda, Lakhanpaul, Monica, Morris, Christopher, Tann, Cally, Harniess, Phillip, Lewis‐Jackson, Sasha, Kuper, Hannah, and Heys, Michelle
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- *
FAMILIES & psychology , *HOLISTIC medicine , *HEALTH services accessibility , *COMMUNITY health services , *PATIENTS' families , *MEDICAL personnel , *HUMAN services programs , *QUALITATIVE research , *RESEARCH funding , *PEDIATRICIANS , *CHILD health services , *INTERVIEWING , *PSYCHOLOGICAL adaptation , *CEREBRAL palsy , *NEUROLOGICAL disorders , *PATIENT-centered care , *THEMATIC analysis , *RESEARCH methodology , *COMMUNICATION , *PARENTS of children with disabilities , *PSYCHOLOGY of caregivers , *NEEDS assessment , *SOCIAL support , *PSYCHOSOCIAL factors , *CHILDREN - Abstract
Background: Children and young people (CYP) with complex neurodisability experience multiple physical, communication, educational and social challenges, which require complex packages of multidisciplinary care. Part of the holistic care required includes supporting the families and parents/caregivers. The aim of the wider study was to introduce a new programme ('Ubuntu') to parents/caregivers and healthcare professionals (HCPs) in order to test the feasibility and acceptability of the concept and content, with the goal of potential adaptation for the UK in mind. Data collection and analysis uncovered rich data on caregiving journeys, navigation of health services, and perceived service gaps. This paper focuses solely on these topics. Further papers will report on the feasibility and adaptation data. Methods: Two rounds of semi‐structured interviews were conducted with 12 caregivers of CYP with complex neurodisability and six HCPs from a variety of disciplines, recruited from a community child health service in London Borough of Newham, UK in 2020. The interviews included open‐ended questions to explore caregiving journeys, experiences of navigating health services and perceived service gaps. Transcripts were analysed using a data‐driven inductive thematic analysis. Results: Three themes were identified that related to the aim of understanding caregivers' experiences and unmet needs relating to current service provision. These were (1) Caregiver Mental Health, (2) The Information Gap and (3) The Need for Holistic Support. Mental health difficulties were reported, particularly around the period of diagnosis. Priority needs included the provision of clear information about the diagnosis and services offered, opportunities to forge peer support networks and for services across the community to collaborate. Conclusions: The delivery of health services for CYP with neurodisability should encompass the broad needs of the family as well as meeting the clinical needs of the CYP. [ABSTRACT FROM AUTHOR]
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- 2024
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22. Exploring concepts of friendship formation in children with language disorder using a qualitative framework analysis.
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Janik Blaskova, Lenka and Gibson, Jenny L.
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PSYCHOLOGY of children with disabilities , *LANGUAGE disorders in children , *QUALITATIVE research , *RESEARCH funding , *INTERVIEWING , *JUDGMENT sampling , *CHILDHOOD friendships , *RESEARCH , *CONCEPTUAL structures , *SOCIAL skills , *RESEARCH methodology , *INTERPERSONAL relations , *WELL-being , *PHYSICAL activity - Abstract
Purpose: Sociometric studies and adult reports have established that children with Language Disorder (LD) are at risk of peer relationship difficulties. However, we have limited knowledge of how children with LD understand friendship, whom they deem as a good or bad friend, and what role their friendship concepts play in their relationships with peers. This exploratory study aimed to conduct a qualitative investigation into the friendship concepts that children with LD hold and to explore their strategies for making friends. Methods: We conducted multiple, art‐informed interviews on the topic of friendship with 14 children with LD at the age of 6–8 years. Participating children were based in the United Kingdom and Republic of Ireland. They attended enhanced provision, specific speech and language classes and mainstream classrooms. We used framework analysis to map children's responses to Selman's (1979) developmental model of interpersonal understanding, which espouses a theory of children's social development within the context of peer relationships. Results: The understanding of friendship formation in children with LD varied from physical presence to mutual support and sharing. Children's ideas about a good/bad friend represented the lowest developmental stage. Participants from the mainstream classroom demonstrated the highest stages of interpersonal understanding. Children with LD did not mention their language abilities as a barrier to making friends. Conclusion: There are limited studies exploring friendship directly from children with LD, and this study provides insights into this gap, by utilising art‐informed interviews. Children's immature understanding of a good/bad friend points towards a potential susceptibility to false friends, which we suggest needs further empirical validation. We also found that children with LD did not pay attention to their language difficulties when making friends, which raises questions about the ways diagnoses are shared with children. WHAT THIS PAPER ADDS: What is already known on the subject: Children with Language Disorder (LD) are at risk of peer relationship difficulties. Studies to date are based on sociometrics and adult reports. Only a few studies employ participatory approaches to research with children, directly engaging children with LD when exploring their friendships What this paper adds: This paper directly asks children with LD about their understanding of friendship and strategies for making friends.Physical proximity and play are important to children.s understanding of friendship especially in recognising good and bad friends. This indicates potential reasons for children with LD being susceptible to false friendsAdditionally, children with LD do not perceive language and communication as a barrier to making friends. What are the potential or actual clinical implications of this work?: Concepts around friendship and good/bad friends should be routinely assessed and targeted (if appropriate) in interventions. The study highlights the need to continue discussing practices around sharing diagnoses with children with LD. [ABSTRACT FROM AUTHOR]
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- 2024
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23. Delirium superimposed on dementia: mental health nurses’ experiences of providing care.
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Pryor, Claire Anne and Thompson, Juliana
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NATIONAL health services ,INTERVIEWING ,NURSING ,DESCRIPTIVE statistics ,JUDGMENT sampling ,EXPERIENCE ,DELIRIUM ,NURSES' attitudes ,RESEARCH methodology ,RESEARCH ,DEMENTIA ,PSYCHIATRIC nursing ,DATA analysis software - Abstract
Why you should read this article: • To understand the complexity of the needs of people with delirium superimposed on dementia • To enhance your knowledge of second-generation activity theory • To recognise the consequences of the separation of physical health and mental healthcare. Background: Delirium superimposed on dementia (DSD) affects the physical, mental and cognitive well-being of the person. The separation of physical health and mental health means that the care of people with DSD is at odds with the multifaceted aetiology and presentation of the condition. There is a lack of research on DSD from a mental health perspective. Aim: To explore UK mental health nurses’ experiences of providing care for people with DSD. Method: Individual semi-structured interviews were conducted with seven mental health nurses from one NHS trust in England. Participants’ experiences were considered through the lens of second-generation activity theory. Data were analysed using framework analysis. Findings: Six themes were identified: awareness of guidance and tools; guidance or tools as ‘paper exercises’; knowing the patient; the multidisciplinary team; care burden; and mental health versus physical health. Conclusion: When providing care for people with DSD, mental health nurses use their skills in knowing patients as individuals. However, this aspect of ‘knowing’ cannot be readily translated into the use of a numerical scoring tool. An integrated approach is required to support the care of people with DSD. [ABSTRACT FROM AUTHOR]
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- 2024
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24. Discrimination, disadvantage and disempowerment during COVID-19: a qualitative intrasectional analysis of the lived experiences of an ethnically diverse healthcare workforce in the United Kingdom.
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Gogoi, Mayuri, Qureshi, Irtiza, Chaloner, Jonathan, Al-Oraibi, Amani, Reilly, Holly, Wobi, Fatimah, Agbonmwandolor, Joy Oghogho, Ekezie, Winifred, Hassan, Osama, Lal, Zainab, Kapilashrami, Anuj, Nellums, Laura, Pareek, Manish, Gray, Laura, Guyatt, Anna L, Johns, Catherine, McManus, Chris I, Woolf, Katherine, Abubakar, Ibrahim, and Gupta, Amit
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EMIGRATION & immigration ,MEDICAL personnel ,SELF-efficacy ,QUALITATIVE research ,FOCUS groups ,RESEARCH funding ,INTERVIEWING ,DESCRIPTIVE statistics ,INTERSECTIONALITY ,RACE ,THEMATIC analysis ,RACISM ,ATTITUDES of medical personnel ,EMPLOYMENT discrimination ,COMPARATIVE studies ,GROUNDED theory ,PSYCHOSOCIAL factors ,LABOR supply ,COVID-19 pandemic ,CULTURAL pluralism - Abstract
Background: Healthcare workers (HCWs) in the United Kingdom (UK) have faced many challenges during the COVID-19 pandemic, some of these arising out of their social positions. Existing literature explicating these challenges (e.g., lack of appropriate PPE, redeployment, understaffing) have highlighted inequities in how these have been experienced by HCWs based on ethnicity, gender or, job role. In this paper, we move a step ahead and examine how the intersection of these social positions have impacted HCWs' experiences of challenges during the pandemic. Methods: We collected qualitative data, using interviews and focus groups, from 164 HCWs from different ethnicities, gender, job roles, migration statuses, and regions in the United Kingdom (UK) between December 2020 and July 2021. Interviews and focus groups were conducted online or by telephone, and recorded with participants' permission. Recordings were transcribed and a hybrid thematic analytical approach integrating inductive data-driven codes with deductive ones informed by an intersectional framework was adopted to analyse the transcripts. Results: Thematic analysis of transcripts identified disempowerment, disadvantage and, discrimination as the three main themes around which HCWs' experiences of challenges were centred, based on their intersecting identities (e.g., ethnicity gender, and/or migration status). Our analysis also acknowledges that disadvantages faced by HCWs were linked to systemic and structural factors at the micro, meso and macro ecosystemic levels. This merging of analysis which is grounded in intersectionality and considers the ecosystemic levels has been termed as 'intrasectionalism'. Discussion: Our research demonstrates how an intrasectional lens can help better understand how different forms of mutually reinforcing inequities exist at all levels within the healthcare workforce and how these impact HCWs from certain backgrounds who face greater disadvantage, discrimination and disempowerment, particularly during times of crisis like the COVID-19 pandemic. [ABSTRACT FROM AUTHOR]
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- 2024
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25. Using longitudinal qualitative research to explore the experience of receiving and using augmentative and alternative communication.
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Broomfield, Katherine, Judge, Simon, Sage, Karen, Jones, Georgina L., and James, Deborah
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MEDICAL care use , *FACILITATED communication , *QUALITATIVE research , *INTERVIEWING , *EXPERIENCE , *LONGITUDINAL method , *PRE-tests & post-tests , *THEMATIC analysis , *COMMUNICATION devices for people with disabilities , *RESEARCH methodology , *CONCEPTUAL structures , *HEALTH outcome assessment , *MEDICAL needs assessment , *PHENOMENOLOGY , *CONCEPTS , *COMPARATIVE studies , *PATIENTS' attitudes , *EVALUATION - Abstract
Background: People who have communication difficulties may benefit from using augmentative and alternative communication (AAC). Understanding and measuring outcomes from the use of AAC is an important part of evaluating the impact of devices and services. Outcome measurement needs to reflect the changing nature of the impact of using AAC on an individual's ability to participate in activities of daily life. There is a limited understanding of the concepts that should inform the evaluation of outcomes from AAC device provision, nor how people's expectations from AAC may change over time. Aims: To inform the development of a patient‐reported outcome measure for AAC by understanding more about people's expectations from AAC and how these change over time. Methods & Procedures: A longitudinal qualitative research study was designed and carried out with seven participants over a period of 2 years. Participants were recruited from a regional specialist assessment service for AAC in the south‐west of the UK. Four semi‐structured interviews were carried out: (1) before assessment for AAC, (2) after assessment, (3) directly after provision of an AAC device and (4) between 6 and 12 months after provision. An original analytic method was used in this study that built on the principles of longitudinal interpretative phenomenology analysis, applied with a dialogic theoretical lens. This approach enabled the inclusion of a range of multimodal and embodied data collected to this study and allowed the research team to draw out salient themes across the cohort group while attending to the influence of time and context on experience. Outcomes & Results: The results confirm and extend the three core concepts that were used to guide analysis: changes; contexts; future possibilities. The contextual and temporal influences on outcomes attainable from AAC for this cohort were also identified and illustrated through cross‐case comparison. Deeper, analytic, and conceptual engagement with theory, which was then applied to analysis of the data, provided methodological rigour in the study. The results enhance our understanding of people's hopes and expectations from AAC and how these change over time. Conclusions & Implications: This qualitative longitudinal research study provides new insights into the journeys of people who experience communication disability, and the shifting nature of their sense of identity as they engage with, and learn from using, AAC. The study is significant as it attends to the dynamic nature of experience and how contextual and experiential factors influence people's hopes and expectations from AAC. The paper presents an original application of longitudinal qualitative research methodology with people who use AAC which can be further applied and tested in the field of communication disability research. WHAT THIS PAPER ADDS: What is already known on this subject: We did not know the impact that time has on the concepts that have been identified to represent important outcomes from AAC. The existing concepts used to define outcomes from AAC were not adequately conceptualized to develop a patient‐reported outcome measure. This study sought to extend our knowledge about outcomes from AAC. What this paper adds to the existing knowledge: This study adds to the methodological toolkit available for qualitative inquiry in the field of communication disability research by presenting a longitudinal qualitative research methodology. It adds depth to our understanding of the concepts that underpin outcomes from AAC and highlights the dynamic nature of contexts and how this influences desired outcomes. What are the potential or actual clinical implications of this work?: This longitudinal qualitative research study provides a broader perspective on the experience of getting AAC. It will enable clinicians to better navigate the contextual and transitionary factors that influence people's experience of acquiring AAC devices. The enhanced concepts described will also support clinical conversations that consider the wider facets of communication and what AAC can add to existing communicative tool kits beyond getting a message across. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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26. 'It's the way they look at you': Why discrimination towards young parents is a policy and practice issue.
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HEALTH policy ,PARENT attitudes ,CULTURE ,SCIENTIFIC observation ,FOCUS groups ,JUDGMENT (Psychology) ,TEENAGE mothers ,DISCRIMINATION (Sociology) ,PRACTICAL politics ,INTERVIEWING ,SOCIAL stigma ,ETHNOLOGY research ,PSYCHOSOCIAL factors ,TEENAGE fathers - Abstract
Qualitative research has long critiqued a simplistic association between youth parenting and poor outcomes. Despite this, the UK youth parenting policy continues to view young parents through a narrow deficit lens, focused on assumed risk rather than structural inequalities. The paper brings together the direct accounts of young parents' experiences, with ethnographic observation of practice, to argue that discrimination is the critical issue associated with being a young parent. This is then set within a wider critique of the policy framework which, it is argued, perpetuates and normalises negative ideas about young parents prevalent in political, societal and cultural processes. An integrative theoretical approach is used to highlight how a deficit lens at a policy level upholds, rather than undermines, young parents' intersectional experiences of discrimination and has ethical implications for practitioners working with them. The paper calls for a reorientation of policy which addresses and disrupts discrimination. [ABSTRACT FROM AUTHOR]
- Published
- 2022
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27. Negotiating social belonging: A case study of second‐generation Kurds in London.
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Moftizadeh, Nali, Zagefka, Hanna, and Barn, Ravinder
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NEGOTIATION ,ATTITUDE (Psychology) ,FAMILIES ,GROUP identity ,INTERVIEWING ,EMIGRATION & immigration ,QUALITATIVE research ,EMOTIONS ,ETHNIC groups ,SOCIAL integration - Abstract
This qualitative study aims to contribute to our understanding of how second‐generation immigrants negotiate their multiple identities, and construct their feelings of belonging. We focus on second‐generation ethnic Kurds, a stateless ethnic group with a complex political and social history, who have seldom been investigated in a UK context. Drawing on data from interviews with 14 Kurds living in the UK, this paper outlines the tensions in Kurds' lived experiences of Kurdish and British identity; in particular, experiences of feeling "othered" and how this manifests in relation to their identities. We found that Kurds most commonly dealt with some of the tensions they experienced from not belonging or feeling like an "other" by constructing new identities with more permeable boundaries of belonging; in this study, this was achieved through a "place‐based" identity. In sum, this paper offers a novel contribution to discourses of belonging, by demonstrating how the nuances of belonging and its lived complexities manifest in the experiences of UK‐based second‐generation Kurds, and the resultant strategies that they adopt to navigate tensions. [ABSTRACT FROM AUTHOR]
- Published
- 2022
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28. The importance of school in the management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): issues identified by adolescents and their families.
- Author
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Clery, Philippa, Linney, Catherine, Parslow, Roxanne, Starbuck, Jennifer, Laffan, Amanda, Leveret, Jamie, and Crawley, Esther
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CHRONIC fatigue syndrome treatment ,PARENT attitudes ,ACADEMIC accommodations ,HIGH schools ,TEACHER-student relationships ,HEALTH education ,SOCIAL support ,FOCUS groups ,ATTITUDES of medical personnel ,WORK ,RESEARCH methodology ,INTERVIEWING ,MEDICAL personnel ,PATIENTS' attitudes ,EXPERIENCE ,QUALITATIVE research ,PATIENTS' families ,EXPERIENTIAL learning ,PSYCHOLOGY of high school students ,RESEARCH funding ,ACCEPTANCE & commitment therapy ,THEMATIC analysis ,ADOLESCENCE - Abstract
Paediatric Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a disabling condition. Schools play a key role in adolescents' experiences with managing ME/CFS. However, little is known about the experiences of adolescents with ME/CFS (and their families) in schools. This paper is an incidental qualitative study, which combines data from two independent ME/CFS studies: study 1 researched ethnic minority adolescents with ME/CFS; study 2 explored Acceptance and Commitment Therapy for adolescents with ME/CFS who had not recovered after one year. Participants included: adolescents with ME/CFS; their families; and medical professionals (ME/CFS specialists and non‐specialists). Adolescents, their families, and ME/CFS medical professionals were recruited from a UK specialist paediatric ME/CFS service. Non‐ME/CFS medical professionals were recruited from the same region. Semi‐structured qualitative interviews and focus groups were undertaken. Participants' views on schools from each study were combined and thematic analysis was used to identify themes. Fifteen adolescents with ME/CFS (11–17 years old), sixteen family members, and ten medical professionals (GPs, school nurses and ME/CFS specialists) were interviewed. Four key themes were found: (1) adolescents identified school was important for aiding ME/CFS recovery, especially educationally and socially; (2) families described varying levels of support from schools and local authorities with help managing ME/CFS – some described significant practical and emotional difficulties to accessing education, whereas others recounted examples of positive supportive strategies, particularly when teachers had previous experience or knowledge of ME/CFS; (3) parents thought three‐way communication between schools, healthcare and families could improve support; (4) participants felt schools were an appropriate place for knowledge building and raising awareness of ME/CFS amongst teachers and pupils, to aid improved supportive measures. In conclusion, this paper provides rich data that highlights the importance of education and the realistic fears and hurdles for adolescents with ME/CFS remaining engaged in education and the impact on their future. Some families described positive strategies in school, which were viewed as helpful to manage ME/CFS in the classroom. These strategies could be implemented alongside knowledge building initiatives and improved communication between healthcare and education. There is a need to further investigate useful strategies and determine how teachers can be best supported in implementing them. [ABSTRACT FROM AUTHOR]
- Published
- 2022
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29. A mixed-methods process evaluation of an integrated care system's population health management system to reduce health inequalities in COVID-19 vaccination uptake.
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Watson, Georgia, Moore, Cassie, Aspinal, Fiona, Hutchings, Andrew, Raine, Rosalind, and Sheringham, Jessica
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POPULATION health management ,EVALUATION of medical care ,IMMUNIZATION ,COVID-19 vaccines ,RESEARCH methodology ,STAKEHOLDER analysis ,INTERVIEWING ,SYSTEM analysis ,CASE studies ,DESCRIPTIVE statistics ,RESEARCH funding ,HEALTH equity ,INTEGRATED health care delivery ,THEMATIC analysis ,COVID-19 pandemic - Abstract
Purpose: Many countries have a renewed focus on health inequalities since COVID-19. In England, integrated care systems (ICSs), formed in 2022 to promote integration, are required to reduce health inequalities. Integration is supported by population health management (PHM) which links data across health and care organisations to inform service delivery. It is not well-understood how PHM can help ICSs reduce health inequalities. This paper describes development of a programme theory to advance this understanding. Design/methodology/approach: This study was conducted as a mixed-methods process evaluation in a local ICS using PHM. The study used Framework to analyse interviews with health and care professionals about a PHM tool, the COVID-19 vaccination uptake Dashboard. Quantitative data on staff Dashboard usage were analysed descriptively. To develop a wider programme theory, local findings were discussed with national PHM stakeholders. Findings: ICS staff used PHM in heterogeneous ways to influence programme delivery and reduce inequalities in vaccine uptake. PHM data was most influential where it highlighted action was needed for "targetable" populations. PHM is more likely to influence decisions on reducing inequalities where data are trusted and valued, data platforms are underpinned by positive inter-organisational relationships and where the health inequality is a shared priority. Originality/value: The COVID-19 pandemic accelerated a shift toward use of digital health platforms and integrated working across ICSs. This paper used an evaluation of integrated data to reduce inequalities in COVID-19 vaccine delivery to propose a novel programme theory for how integrated data can support ICS staff to tackle health inequalities. [ABSTRACT FROM AUTHOR]
- Published
- 2023
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30. Perceptions and attitudes towards Covid-19 vaccines: narratives from members of the UK public.
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Ajana, Btihaj, Engstler, Elena, Ismail, Anas, and Kousta, Marina
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VACCINATION ,IMMUNIZATION ,COVID-19 vaccines ,ATTITUDE (Psychology) ,INTERNATIONAL public health laws ,RESEARCH methodology ,INTERVIEWING ,COMPARATIVE studies ,VACCINE hesitancy ,DESCRIPTIVE statistics ,RESEARCH funding ,THEMATIC analysis ,COVID-19 pandemic ,PUBLIC opinion - Abstract
Aim: The aim of the paper is to enhance understanding of how members of the public make sense of the Covid-19 vaccines and to understand the factors influencing their attitudes towards such artefacts of pandemic governance. Methods: The paper draws on 23 online in-depth interviews with members of the UK public and builds on relevant literature to examine participants' perceptions of the benefits and risks of Covid-19 vaccines, the sources that have shaped their attitudes, and the level of trust they have towards the government's handling of the pandemic through vaccines. Results: The findings indicate that participants generally felt that the benefits of having the vaccine outweigh the risks and that Covid-19 vaccines are a crucial mechanism for enabling society to return to normal. Vaccine acceptance was, for some, strongly linked to a sense of social responsibility and the duty to protect others. However, some participants expressed concerns with regard to the side-effects of Covid-19 vaccines and their perceived potential impact on fertility and DNA makeup. Participants used various sources of information to learn about Covid-19 vaccines and understand their function, benefits, and risks. The majority of participants criticised the government's response during the early stages of the pandemic yet felt positive about the vaccine rollout. Conclusion: Just as with any other vaccination programme, the success of the Covid-19 immunisation campaigns does not only depend on the efficacy of the vaccines themselves or the ability to secure access to them, but also on a myriad of other factors which include public compliance and trust in governments and health authorities. To support an effective immunisation campaign that is capable of bringing the pandemic to an end, governments need to understand public concerns, garner trust, and devise adequate strategies for engaging the public and building more resilient societies. [ABSTRACT FROM AUTHOR]
- Published
- 2023
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31. Diagnostic procedures of paediatric speech and language therapists in the UK: Enabling and obstructive factors.
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Harvey, Hannah
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ATTITUDES of medical personnel ,RESEARCH methodology ,MEDICAL screening ,PEDIATRICS ,INTERVIEWING ,PHENOMENOLOGY ,DESCRIPTIVE statistics ,RESEARCH funding ,THEMATIC analysis ,SPEECH therapists - Abstract
Background: Extensive variation in the terminology used for paediatric diagnoses across the speech and language therapy research literature is an internationally recognized problem. Little is known, however, about how and how often diagnoses are given in a clinical context. In the UK, speech and language therapists (SLTs) identify and support children who have speech and language needs. To understand and address clinically rooted terminological issues that may directly impact clients and families, there is a need for exploration of how the diagnostic process is operationalized in practice. Aim: To identify, from the perspective of SLTs, areas that present as enabling and obstructive factors to conducting diagnosis in clinical practice. Methods & Procedures: Taking a phenomenological approach, 22 paediatric SLTs were interviewed using a semi‐structured format. Thematic analysis revealed a number of factors that were either classified as 'enabling' or 'obstructive' to their diagnostic processes. Outcomes & Results: Participants were often hesitant to provide a diagnosis to families and universally reported the need for targeted guidance, which accounts for the demands of current clinical practice, to guide their diagnostic process. Four enabling factors were identified from participant data: (1) working to a medical model, (2) the availability of collegiate support, (3) recognizing the benefits of diagnosis,, and (4) relating to the needs of the family. Seven themes portrayed obstructive factors in practice: (1) the complex presentation of clients, (2) the risk of giving a 'wrong' diagnosis, (3) participants' uncertainty about diagnostic criteria, (4) insufficient training, (5) service models, (6) concerns about stigma and (7) not having enough clinical time. The obstructive factors created dilemmas for participants and resulted in hesitancy to give a diagnosis, potentially contributing to delays in diagnosis experienced by families as reported in previous literature. Conclusions & Implications: Of paramountcy to SLTs were the individual needs and preferences of their clients. Practical barriers and areas of uncertainty increased hesitance to diagnose, which may inadvertently preclude families from accessing resources. Recommendations include more widely accessible training in diagnostic practice, guidelines to support clinical decision‐making, and a greater understanding of client preferences with regard to terminology and its potential relationship with social stigma. What This Paper Adds: What is already known on the subject: Inconsistency in terminology for paediatric language diagnoses has been broadly discussed, mostly in reference to variation within research literature. The Royal College of Speech and Language Therapists' (RCSLT) position statement on developmental language disorder (DLD) and language disorder made recommendations for SLTs to use these terms in clinical practice. There is some evidence that SLTs face challenges in operationalizing diagnostic criteria in practice, particularly given financial and resource constraints. What this paper adds to existing knowledge: SLTs disclosed several issues that either supported or were obstructive to the practice of diagnosing paediatric clients and delivering this information to families. Whilst most SLTs faced constraints related to the practicalities and demands of clinical practice, a number also held reservations about the impact of a lifelong diagnosis for young clients. These issues resulted in considerable avoidance of formal diagnostic terminology, in favour of description or informal terminology. What are the potential or actual clinical implications of this work?: If diagnoses are not given, or if SLTs are using informal diagnostic terms as an alternative strategy, clients and families may experience reduced opportunities to yield benefits associated with a diagnosis. Clinical guidance that specifically addresses the prioritization of time and provides directives for clinical action in instances of uncertainty may support SLTs to feel confident in giving diagnoses. [ABSTRACT FROM AUTHOR]
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- 2023
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32. Career development and internal migration: a Scottish case study.
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Alexander, Rosie
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LABOR mobility ,WORK environment ,VOCATIONAL guidance ,CULTURAL pluralism ,INTERVIEWING - Abstract
A growing body of literature has focused on issues of migration in career development and guidance, however typically this research has focused on international migration rather than migration within a country's borders. This paper presents a specific case study of internal migration in the UK context, focusing on young people from two island communities as they move through higher education and into the working world. The paper is specifically focused on the importance of cultural differences, including workplace cultures, with regard to students' career development. The findings demonstrate the relevance of internal migration pathways to career development and indicate that a culturally informed approach to career guidance practice is important when working with internal as well as international migrants. [ABSTRACT FROM AUTHOR]
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- 2021
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33. Design and implementation of an online admissions interview for selection to nursing and midwifery programmes: a partnership approach.
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Traynor, Marian, Dunleavy, Stephanie, McIlfatrick, Sonja, Fitzsimons, Donna, Stevenson, Michael, McEvoy, Roisin, and Mulvenna, Caroline
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CROSS-sectional method ,HUMAN services programs ,QUALITATIVE research ,CRONBACH'S alpha ,INTERPROFESSIONAL relations ,MIDWIVES ,HEALTH occupations students ,INTERVIEWING ,QUESTIONNAIRES ,INTERNET ,QUANTITATIVE research ,DESCRIPTIVE statistics ,SCHOOL entrance requirements ,NURSING students ,DEMOGRAPHY - Abstract
Background: The recent surge in applications to nursing in the United Kingdom together with the shift towards providing virtual interviews through the use of video platforms has provided an opportunity to review selection methodologies to meet a new set of challenges. However there remains the requirement to use selection methods which are evidence-based valid and reliable even under these new challenges. Method: This paper reports an evaluation study of applicants to nursing and midwifery and reports on how to plan and use online interviews for in excess of 3000 applicants to two schools of nursing in Northern Ireland. Data is reported from Participants, Assessors and Administrators who were asked to complete an online evaluation using Microsoft Forms. Results: A total of 1559 participants completed the questionnaire. The majority were aged 17–20. The findings provide evidence to support the validity and reliability of the online interview process. Importantly the paper reports on the design and implementation of a fully remote online interview process that involved a collaboration with two schools of nursing without compromising the rigour of the admissions process. The paper provides practical, quantitative, and qualitative reasons for concluding that the online remote selection process generated reliable data to support its use in the selection of candidates to nursing and midwifery. Conclusion: There are significant challenges in moving to online interviews and the paper discusses the challenges and reflects on some of the broader issues associated with selection to nursing and midwifery. The aim of the paper is to provide a platform for discussion amongst other nursing schools who might be considering major changes to their admissions processes. [ABSTRACT FROM AUTHOR]
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- 2022
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34. 'You're on show all the time': Moderating emotional labour through space in the emergency department.
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Kirk, Kate, Cohen, Laurie, Edgley, Alison, and Timmons, Stephen
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WELL-being ,WORK environment ,SCIENTIFIC observation ,HEALTH facilities ,RESEARCH methodology ,TIME ,QUANTITATIVE research ,INTERVIEWING ,LABOR supply ,EMPLOYEES' workload ,DESCRIPTIVE statistics ,RESEARCH funding ,EMOTION regulation ,EMPIRICAL research ,DATA analysis software ,EMERGENCY nursing - Abstract
Aims: This is the second of two papers conceptualizing emotional labour in the emergency department (ED). This paper aims to understand the environmental 'moderators' of ED nurses' emotional labour. Design: Ethnography, through an interpretivist philosophy, enabled immersion in the ED setting, gathering the lived experiences and narratives of the ED nurses. Methods: Observation and semi‐structured interviews over a 6‐month period. Two hospital sites (one district general and one major trauma centre based in the United Kingdom. Results: Over 200 h of observation plus 18 formal/semi‐structured interviews were completed. Environmental, institutional and organizational dynamics of the emergency department instrumented the emotional labour undertaken by the nursing team. Time and space were found to be 'moderators' of ED nurses' emotional labour. This paper focusses on the relevance of space and in particular, 'excessive visibility' with little respite for the nurses from their intense emotional performance. Conclusion: Emotional labour is critical to staff well‐being and the way in which healthcare spaces are designed has an impact on emotional labour. Understanding how emotional labour is moderated in different clinical settings can inform organizational, environmental and workforce‐related decision‐making. [ABSTRACT FROM AUTHOR]
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- 2022
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35. A mile in their shoes: understanding health-care journeys of refugees and asylum seekers in the UK.
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Talks, Isobel, Al Mobarak, Buthena, Katona, Cornelius, Hunt, Jane, Winters, Niall, and Geniets, Anne
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HEALTH services accessibility ,EMIGRATION & immigration ,DENTAL care ,MENTAL health ,RESEARCH funding ,QUALITATIVE research ,HEALTH status indicators ,FOCUS groups ,PSYCHOLOGY of refugees ,MEDICAL care ,INTERVIEWING ,STATISTICAL sampling ,EVALUATION of medical care ,EXPERIENCE ,RESEARCH methodology ,HEALTH outcome assessment ,HEALTH education ,PATIENTS' attitudes - Abstract
Purpose: Refugees and asylum seekers worldwide face numerous barriers in accessing health systems. The evidence base regarding who and what helps refugees and asylum seekers facilitate access to and the navigation of the health system in the UK is small. This study aims to address this gap by analysing 14 semi-structured, in-depth interviews with refugees and asylum seekers of different countries of origin in the UK to identify where, when and how they came into contact with the health-care system and what the outcome of these interactions was. Design/methodology/approach: Semi-structured, in-depth interviews were chosen as the key method for this study. In total, 14 individual interviews were conducted. A trauma-informed research approach was applied to reduce the risk of re-traumatising participants. Findings: The paper identifies key obstacles as well as "facilitators" of refugees' and asylum seekers' health-care experience in the UK and suggests that host families, friends and third-party organisations all play an important role in ensuring refugees and asylum seekers receive the healthcare they need. Originality/value: To the best of the authors' knowledge, this is the first qualitative study in the UK that looks at comprehensive health journeys of refugees from their first encounter with health services through to secondary care, highlighting the important role along the way of facilitators such as host families, friends and third-party organisations. [ABSTRACT FROM AUTHOR]
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- 2024
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36. Comparing service user perspectives of an early intervention in psychosis service before and during COVID-19 lockdowns: a service evaluation.
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Sakaria, Nikita, Sanderson, Christopher, Watkins, Simon, and Boynton, Victoria
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WORK ,EARLY medical intervention ,MENTAL health services ,HEALTH attitudes ,SATISFACTION ,T-test (Statistics) ,INTERVIEWING ,QUESTIONNAIRES ,MEDICAL care ,DESCRIPTIVE statistics ,STAY-at-home orders ,THEMATIC analysis ,RESEARCH methodology ,COMMUNICATION ,PSYCHOSES ,COMPARATIVE studies ,CONFIDENCE intervals ,PATIENTS' attitudes ,COVID-19 pandemic ,EXPERIENTIAL learning ,SOCIAL participation - Abstract
Purpose: This service evaluation aims to understand the experiences of service users (SUs) who accessed an early intervention in psychosis (EIP) service during the Coronavirus pandemic using qualitative and quantitative methodologies and compare these to a previous pre-pandemic study conducted within the same service (Watkins et al., 2018). Design/methodology/approach: This paper collated experiences of individuals accessing an EIP service to inform service development. Questionnaires and individual interviews were conducted to provide quantitative and qualitative data. Descriptive statistics and T-test confidence intervals were created from the results and compared to findings of Watkins et al. (2018). Interviews were transcribed verbatim and analysed using Braun and Clarke's (2006) thematic analysis. Findings: Data showed participants were largely satisfied with all areas of the service with "work or education", "living skills", and "addictions" scoring highest. Though participants reported no overall dissatisfaction, satisfaction levels dropped in "social activities" compared to the findings of Watkins et al. (2018), perhaps due to the national restrictions put in place to manage the spread of Coronavirus during this time. Interview analysis identified three themes of importance consistent with prior literature, highlighting the importance of relationships and validation during recovery. Research limitations/implications: This evaluation did not consider whether participants had accessed the service prior to the pandemic or only during, meaning that some participants could have a point of comparison with the service pre-pandemic, whereas others might not. Similarly, the participants were not the same as those of the Watkins et al.'s (2018) evaluation, meaning that direct comparisons of pre- and post-pandemic experiences were not possible. In addition, this evaluation collected data at only one time point early in the pandemic; therefore, it is unknown if client experiences of services differed as the pandemic and restrictions continued over time. Originality/value: The Covid-19 pandemic has been an unprecedented challenge for health services, and the effects of this are becoming widely reported. This evaluation of clinical services offers a valuable perspective of service user experience of receiving mental health services during a global health crisis further offering a comparison to pre-pandemic services and the experiences of those who used them. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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37. Fluctuating salience in those living with genetic risk of motor neuron disease: A qualitative interview study.
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Howard, Jade, Mazanderani, Fadhila, Keenan, Karen Forrest, Turner, Martin R., and Locock, Louise
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RISK assessment ,HEALTH literacy ,QUALITATIVE research ,RESEARCH funding ,GENETIC markers ,INTERVIEWING ,STATISTICAL sampling ,DECISION making in clinical medicine ,EXPERIENCE ,QUALITY of life ,DISEASE susceptibility ,MOTOR neuron diseases ,DISEASE risk factors - Abstract
Background: Motor neuron disease (MND) (also known as amyotrophic lateral sclerosis) is a life‐limiting neurodegenerative condition. In up to 20% of people with MND, a pathogenic variant associated with autosomal dominant inheritance can be identified. Children of people carrying a pathogenic variant have a 50% chance of inheriting this and a higher, although harder to predict, chance of developing the disease compared to the general adult population. This paper explores the experience of living with the genetic risk of MND. Methods: We undertook a UK‐based interview study with 35 individuals, including: 7 people living with genetically‐mediated forms of MND; 24 asymptomatic relatives, the majority of whom had an increased risk of developing the disease; and 4 unrelated partners. Results: We explore how individuals make sense of genetic risk, unpacking the interplay between genetic knowledge, personal perception, experiences of the disease in the family, age and life stage and the implications that living with risk has for different aspects of their lives. We balance an emphasis on the emotional and psychological impact described by participants, with a recognition that the salience of risk fluctuates over time. Furthermore, we highlight the diverse strategies and approaches people employ to live well in the face of uncertainty and the complex ways they engage with the possibility of developing symptoms in the future. Finally, we outline the need for open‐ended, tailored support and information provision. Conclusions: Drawing on wider literature on genetic risk, we foreground how knowledge of MND risk can disrupt individuals' taken‐for‐granted assumptions on life and perceptions of the future, but also its contextuality, whereby its relevance becomes more prominent at critical junctures. This research has been used in the development of a public‐facing resource on the healthtalk.org website. Patient or Public Contribution: People with experience of living with genetic risk were involved throughout the design and conduct of the study and advised on aspects including the topic guide, sampling and recruitment and the developing analysis. Two patient and public involvement contributors joined a formal advisory panel. [ABSTRACT FROM AUTHOR]
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- 2024
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38. Lessons learnt from facilitating care home placements for counselling and psychotherapy students during the COVID‐19 pandemic.
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Hubbard, Lydia, Kelly, Siobhan, Rose‐Ford, Helen, Clark, Jodie, and Stephens, Melanie
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- *
COUNSELING , *PSYCHOLOGY of college students , *HOSPITAL medical staff , *INTERVIEWING , *HUMAN services programs , *CASE studies , *DESCRIPTIVE statistics , *RESEARCH funding , *HOUSING , *INTERDISCIPLINARY education , *STUDENT attitudes , *THEMATIC analysis , *PSYCHOTHERAPY , *COVID-19 pandemic - Abstract
Purpose: In 2021, an opportunity arose to place four counselling and psychotherapy (C&P) students in three care homes across Greater Manchester as part of a 6‐week interprofessional education (IPE) care home scheme. Whilst, due to ethical concerns around confidentiality, the C&P students could not participate in interprofessional activities as intended, they still undertook their clinical placement in the home to provide accessible therapy support for care home staff. This paper aims at reporting on the varied factors that influenced the implementation of C&P student placements in care homes. Methods: At the start and end of their placement, four C&P students were interviewed about their experiences. We draw on data from these eight interviews and two reflective vignettes: one from a C&P student and the other from the C&P programme coordinator (C&PPC). Results: The data were thematically analysed, and two key themes and six subthemes were constructed. They broadly unpack the factors that facilitate and challenge the implementation of C&P student placements in care homes. Conclusion: This paper highlights the value of utilising care homes as placement sites for C&P students. We propose four key recommendations for future practice: (1) it is important to establish clear lines of communication, support and collaboration; (2) a dual‐space supervisory approach supports student learning in this "new" placement environment; (3) preplacement supportive frameworks are important to clarify initial role uncertainties within the care home; and (4) opportunities to provide therapy services should be well defined and referral processes put in place before the student arrives. [ABSTRACT FROM AUTHOR]
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- 2024
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39. A qualitative exploration of speech–language pathologists' approaches in treating spoken discourse post‐traumatic brain injury.
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Hoffman, Rhianne, Spencer, Elizabeth, and Steel, Joanne
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- *
SPEECH therapy , *MEDICAL logic , *MEDICAL protocols , *QUALITATIVE research , *INTERVIEWING , *CONTENT analysis , *JUDGMENT sampling , *PHYSICIAN practice patterns , *RESEARCH methodology , *SOCIAL skills , *BRAIN injuries , *DISEASE complications - Abstract
Background: Spoken discourse impairments post‐traumatic brain injury (TBI) are well‐documented and heterogeneous in nature. These impairments have chronic implications for adults in terms of employment, socializing and community involvement. Intervention delivered by a speech–language pathologist (SLP) is recommended for adults with discourse impairments post‐TBI, with an emphasis on context‐sensitive treatment. The developing evidence base indicates a wide array of treatment components for SLPs to evaluate and implement within their clinical practice. However, there is limited insight into how SLPs are currently treating discourse impairments and the rationales informing clinical practice. Aims: To explore the under‐researched area of clinical practice for spoken discourse interventions with adults post‐TBI, including treatment components and clinician rationales, and to contribute towards a shared knowledge base. Methods & Procedures: Participants were recruited via purposeful sampling strategies. Six SLPs participated from Australia, the United Kingdom (UK) and the United States (US). Semi‐structured interviews were conducted via Zoom. Interviews were manually transcribed, coded and analysed via a qualitative content analysis approach. Outcomes & Results: :Participants described discourse treatment practices across various settings and TBI recovery stages. Results indicated that SLPs used numerous treatment activities, resources and outcome measures. Intervention approaches primarily targeted social communication skills, strategy development/utilization and insight‐building. Clinical practice conformed to available guidelines where possible, reflected best practice and incorporated components of the research literature. Participants reported using individualized treatment activities aimed at addressing client‐specific factors and rationales prioritized tailored, context‐sensitive and goal‐directed treatment. Conclusions & Implications: This study provided insight into a previously under‐researched area. It highlighted a wide range of treatment activities and factors informing current SLPs' treatment of spoken discourse impairment post‐TBI. Overall, clinical practice and rationales discussed in this study were aligned with best practice and emphasized a contextualized, individualized approach to discourse treatment across service settings and stages of recovery. Participants identified areas requiring further support, including access to training, resources and research, and the challenge of finding suitable outcome measures. Further investigation into discourse management post‐TBI, from initial assessment to outcome measurement, may help inform clinical decision‐making and the transfer of research to practice. WHAT THIS PAPER ADDS: What is already known on the subject: Spoken discourse impairments occur in dialogic and monologic productions post‐TBI. Interventions targeting both genres are detailed within the research literature; however, studies exploring clinical practice and decision‐making for discourse interventions post‐TBI are limited. What this paper adds to existing knowledge: This study provides new insight into the current treatment targets, activities, resources and outcome measures employed by clinicians supporting adults with discourse impairment post‐TBI. It details the factors that influence clinical decision‐making for this caseload and identifies an emphasis on client priorities and the value of clinician experience. What are the potential or actual clinical implications of this work?: This study identifies the broad and complex considerations required to deliver context‐sensitive discourse intervention post‐TBI. It indicates the need for an in‐depth review from assessment to treatment outcomes to better understand and support this area of practice and to direct future research. This study also highlighted the role of clinician experience in discourse intervention and the value of sharing clinical knowledge and resources within and across the profession to support all levels of clinician experience. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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40. Co‐designing a theory‐informed, multicomponent intervention to increase vaccine uptake with Congolese migrants: A qualitative, community‐based participatory research study (LISOLO MALAMU).
- Author
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Crawshaw, Alison F., Kitoko, Lusau M., Nkembi, Sarah L., Lutumba, Laura M., Hickey, Caroline, Deal, Anna, Carter, Jessica, Knights, Felicity, Vandrevala, Tushna, Forster, Alice S., and Hargreaves, Sally
- Subjects
EDUCATION of refugees ,VACCINATION ,COVID-19 ,IMMUNIZATION ,NOMADS ,HEALTH services accessibility ,COVID-19 vaccines ,ATTITUDE (Psychology) ,COMMUNITY health services ,INTERVIEWING ,MEDICAL care ,QUALITATIVE research ,CONCEPTUAL structures ,MEDICAL protocols ,PHILOSOPHY of education ,COMMUNITY-based social services ,COMMUNICATION ,VACCINE hesitancy ,RESEARCH funding ,MEDICAL needs assessment - Abstract
Introduction: Disparities in the uptake of routine and COVID‐19 vaccinations have been observed in migrant populations, and attributed to issues of mistrust, access and low vaccine confidence. Participatory research approaches and behaviour change theory hold the potential for developing tailored vaccination interventions that address these complex barriers in partnership with communities and should be explored further. Methods: This study used a theory‐informed, community‐based participatory research approach to co‐design a culturally tailored behaviour change intervention aimed at increasing COVID‐19 vaccine uptake among Congolese migrants in London, United Kingdom (2021–2022). It was designed and led by a community‐academic partnership in response to unmet needs in the Congolese community as the COVID‐19 pandemic started. Barriers and facilitators to COVID‐19 vaccination, information and communication preferences, and intervention suggestions were explored through qualitative in‐depth interviews with Congolese migrants, thematically analysed, and mapped to the theoretical domains framework (TDF) and the capability, opportunity, motivation, behaviour model to identify target behaviours and strategies to include in interventions. Interventions were co‐designed and tailored in workshops involving Congolese migrants. Results: Thirty‐two Congolese adult migrants (24 (75%) women, mean 14.3 (SD: 7.5) years in the United Kingdom, mean age 52.6 (SD: 11.0) years) took part in in‐depth interviews and 16 (same sample) took part in co‐design workshops. Fourteen barriers and 10 facilitators to COVID‐19 vaccination were identified; most barrier data related to four TDF domains (beliefs about consequences; emotion; social influences and environmental context and resources), and the behavioural diagnosis concluded interventions should target improving psychological capability, reflective and automatic motivations and social opportunities. Strategies included culturally tailored behaviour change techniques based on education, persuasion, modelling, enablement and environmental restructuring, which resulted in a co‐designed intervention comprising community‐led workshops, plays and posters. Findings and interventions were disseminated through a community celebration event. Conclusions: Our study demonstrates how behavioural theory can be applied to co‐designing tailored interventions with underserved migrant communities through a participatory research paradigm to address a range of health issues and inequalities. Future research should build on this empowering approach, with the goal of developing more sensitive vaccination services and interventions which respond to migrant communities' unique cultural needs and realities. Patient or Public Contribution: Patient and public involvement (PPI) were embedded in the participatory study design and approach, with community members co‐producing all stages of the study and co‐authoring this paper. An independent PPI board (St George's Migrant Health Research Group Patient and Public Involvement Advisory Board) comprising five adult migrants with lived experience of accessing healthcare in the United Kingdom were also consulted at significant points over the course of the study. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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41. Experiences and views of people who frequently call emergency ambulance services: A qualitative study of UK service users.
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Evans, Bridie A., Khanom, Ashra, Edwards, Adrian, Edwards, Bethan, Farr, Angela, Foster, Theresa, Fothergill, Rachael, Gripper, Penny, Gunson, Imogen, Porter, Alison, Rees, Nigel, Scott, Jason, Snooks, Helen, and Watkins, Alan
- Subjects
AMBULANCES ,INTERVIEWING ,PATIENTS' attitudes ,EXPERIENCE ,QUALITATIVE research ,SOUND recordings ,THEMATIC analysis ,DATA analysis software ,MEDICAL case management ,PATIENT-professional relations ,EMERGENCY medicine ,POLICE - Abstract
Introduction: People who call emergency ambulances frequently are often vulnerable because of health and social circumstances, have unresolved problems or cannot access appropriate care. They have higher mortality rates. Case management by interdisciplinary teams can help reduce demand for emergency services and is available in some UK regions. We report results of interviews with people who use emergency ambulance services frequently to understand their experiences of calling and receiving treatment. Methods: We used a two‐stage recruitment process. A UK ambulance service identified six people who were known to them as frequently calling emergency services. Through third‐sector organisations, we also recruited nine individuals with healthcare experiences reflecting the characteristics of people who call frequently. We gained informed consent to record and transcribe all telephone interviews. We used thematic analysis to explore the results. Results: People said they make frequent calls to emergency ambulance services as a last resort when they perceive their care needs are urgent and other routes to help have failed. Those with the most complex health needs generally felt their immediate requirements were not resolved and underlying mental and physical problems led them to call again. A third of respondents were also attended to by police and were arrested for behaviour associated with their health needs. Those callers receiving case management did not know they were selected for this. Some respondents were concerned that case management could label frequent callers as troublemakers. Conclusion: People who make frequent calls to emergency ambulance services feel their health and care needs are urgent and ongoing. They cannot see alternative ways to receive help and resolve problems. Communication between health professionals and service users appears inadequate. More research is needed to understand service users' motivations and requirements to inform design and delivery of accessible and effective services. Patient or Public Contribution: People with relevant experience were involved in developing, undertaking and disseminating this research. Two public contributors helped design and deliver the study, including developing and analysing service user interviews and drafting this paper. Eight public members of a Lived Experience Advisory Panel contributed at key stages of study design, interpretation and dissemination. Two more public contributors were members of an independent Study Steering Committee. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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42. "It's Like a Drive by Misogyny": Sexual Violence at UK Music Festivals.
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Bows, Hannah, Day, Aviah, and Dhir, Alishya
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VIOLENCE prevention ,CULTURE ,SEXISM ,SEX offenders ,RAPE ,RESEARCH methodology ,FEMINISM ,VIOLENCE ,INTERVIEWING ,SOCIAL context ,SEXUAL harassment ,CRIME victims ,CONCEPTUAL structures ,QUALITATIVE research ,SPECIAL days ,SEX crimes ,PSYCHOLOGY of women ,PUBLIC spaces ,GOVERNMENT policy ,RESEARCH funding ,MUSIC ,EMOTIONS ,PSYCHOLOGICAL adaptation ,HOLIDAYS ,WOMEN'S health - Abstract
Despite increasing scholarly and media attention on sexual violence in public spaces, including those associated with the night-time economy and licensed venues, music festivals have been largely absent from research and policy. This paper presents the findings from the first UK study of sexual violence at music festivals, drawing on data from interviews with 13 women who have experienced some form of sexual harassment or assault at a festival. Analysis reveals that sexual violence at festivals occurs on a continuum and represents an extension of rape culture through which sexual violence is culturally condoned and normalized, enabled through a number of environmental and culture features that are unique to festivals. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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43. Approaching systems change at Fulfilling Lives South East in efforts to improve unsupported temporary accommodation: a qualitative case study.
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Cooke, Charlotte, Jones, Kate, Rieley, Rebecca, and Sylvester, Sandra
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PSYCHOLOGICAL vulnerability ,RESEARCH methodology ,INTERVIEWING ,ORGANIZATIONAL change ,QUALITATIVE research ,ACCESSIBLE design of public spaces ,QUALITY assurance ,RESEARCH funding ,INTERPROFESSIONAL relations ,HOUSING ,HOMELESSNESS ,THEMATIC analysis ,LITERATURE reviews ,JUDGMENT sampling - Abstract
Purpose: The purpose of this paper is to consider how a South East project approached systems change to improve unsupported temporary accommodation (UTA) and the changes made for people experiencing multiple disadvantage ("multiple and complex needs"). This paper also covers some matters that are hard to change or uncertain, such as housing shortages and financial constraints. The paper focuses on a case study of the East Sussex Temporary Accommodation Action Group (TAAG) – a multi-agency action group. Design/methodology/approach: A qualitative case study involving a thematic analysis of seven semi-structured interviews, with a review of published literature and internal documentation. Findings: This example of setting up a TAAG shows us the value of having a dedicated forum to look at a part of the system that requires changing and to identify what works well. Creating a collaborative and democratic space with a common purpose brings different stakeholders and perspectives together and opens discussions to new ways of working. Equalising partners creates an opportunity to create change from the bottom-up within a system traditionally governed by statutory bodies. This study found that the TAAG has facilitated learning around trauma-informed practice and nurtured more sustainable changes towards a Standards Charter and women-only safe UTA. Originality/value: This is one of the first qualitative case studies of a local systems change approach to improving UTA for people experiencing multiple disadvantage in East Sussex. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
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44. A thematic analysis of homelessness practitioners' perception of the impacts of welfare reforms in the UK: "Hard to maintain my own mental equilibrium".
- Author
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De Oliveira, Bruno
- Subjects
RESEARCH ,ATTITUDES of medical personnel ,RESEARCH methodology ,INTERVIEWING ,HEALTH care reform ,EXPERIENCE ,HOMELESSNESS ,PUBLIC welfare ,THEMATIC analysis - Abstract
Purpose: This paper aims to explore the lived experiences of key stakeholders working with homeless people during the implementation of universal credit during the austerity years. Design/methodology/approach: The literature on austerity reveals welfare reforms' impact on support services staff. Service providers' perceptions of the impact of austerity-led policies and welfare reform via nine interviews with people working in homelessness organisations in Brighton and Hove in the UK. Service providers see the situation for their service users has gotten worse and that the policies make it more difficult to extricate themselves from their current situation. Three central themes relating to the impact of austerity-led welfare reforms were, namely, Universal Credit: the imposition of a precarious livelihood on welfare claimants; a double-edged sword: "If people are sanctioned: people can't pay"; and "Hard to maintain my own mental equilibrium". Findings: More precisely, this paper captures service providers' perceptions and experiences of the impact of austerity-led policies on their services and how they believe this, in turn, impacts their clients and their own lives. Research limitations/implications: The dimension cuts across service provision to vulnerable people and is intertwined with health and well-being outcomes. Austerity is detrimental to the health of service users and their clients. It is known that when it comes to the health and well-being of the most vulnerable, who have suffered most from the impacts of austerity policies. However, in times of open austerity, it falls also on those trying to ease their suffering. Originality/value: The data suggest that policies were developed and accentuated by austerity, which led to the stripping of welfare support from vulnerable people. This process has impacted the people who rely on welfare and service providers. [ABSTRACT FROM AUTHOR]
- Published
- 2023
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45. Pilot evaluation of the electronic monitoring scheme in the UK.
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Churchman, James William, Baron, Susan, Carr, Michelle, and Orr, Donna
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RECIDIVISM prevention ,PILOT projects ,SCIENTIFIC observation ,PRISONERS ,PROFESSIONAL licenses ,RESEARCH methodology ,ELECTRONIC equipment ,INTERVIEWING ,QUALITATIVE research ,PROBATION ,THEMATIC analysis ,LONGITUDINAL method - Abstract
Purpose: Following research into the application of Electronic Monitoring (EM), Criminal Justice Order (2016) no. 954 was published, which introduced EM for offenders leaving custody in England and Wales (Ministry of Justice, 2016). EM was later extended to include those subjected to release on temporary licence (ROTL). The purpose of this study is to be the first, to the best of the authors' knowledge, to evaluate a pilot project using EM during the ROTL process. The outcome allowed for recommendations to be made regarding the continued use of EM within the open prison estate. Design/methodology/approach: This is a qualitative research project involving semi-structured interviews with staff and residents. Transcripts were analysed using thematic analysis which resulted in exploration of 4 themes and 11 sub-themes and recommendations for future research/practice. Findings: Results demonstrated that both staff and residents evaluated the use of EM as helpful with regard to evidencing compliance with ROTL conditions. In addition, staff also found it helpful for providing additional reassurance to victims and providing evidence for ROTL breaches. Practical implications: To the best of the authors' knowledge, this was the first qualitative evaluation of EM relating to the ROTL process. The evaluation improves understanding of the value of EM for policymakers and the Ministry of Justice, especially in terms of the ROTL process. The recommendations made in this paper evidence the value of EM use in the future. Originality/value: This evaluation supports continued use of EM and its integration into policy and procedures for residents subject to temporary licence. This paper concluded that consistent and reliable use of EM may contribute to victim reassurance and reduce recidivism of residents during ROTL, subsequently increasing the public's perception of safety. [ABSTRACT FROM AUTHOR]
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- 2023
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46. Crisis resolution home treatment team Clinicians' perceptions of using a recovery approach with people with a diagnosis of borderline personality disorder.
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Taylor, Tracy, Stockton, Stephanie, and Bowen, Matt
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TREATMENT of borderline personality disorder ,COMMUNITY mental health nurses ,NURSES' attitudes ,HOME care services ,RESEARCH methodology ,TIME ,CONVALESCENCE ,MEDICAL care ,INTERVIEWING ,INDIVIDUALIZED medicine ,SOCIAL stigma ,QUALITATIVE research ,STATISTICAL sampling ,JUDGMENT sampling ,THEMATIC analysis ,WORKING hours ,RISK management in business ,CRISIS intervention (Mental health services) - Abstract
Accessible Summary: What is known on the subject?: It is known that people with a diagnosis of borderline personality disorder often experience crises in their mental wellbeing.There is little evidence about the approaches of mental health nurses in community‐based crisis teams when working with people with a diagnosis of BPD. What the paper adds to the existing knowledge?: This paper highlights that limited resources, work‐patterns and issues of stigma present challenges to delivering recovery‐oriented care.The paper highlights that nurses typically try to navigate the challenges to continue to provide individualized care, though their self‐assessment is that this is with mixed success. What are the implications for practice?: The findings suggest that support is needed to develop brief interventions specific to teams working with people with a diagnosis of BPD who are at a point of crisis. Introduction: People with a diagnosis of borderline personality disorder (BPD) are often in contact with mental health services at a point of crisis, and in the UK, this includes Crisis Resolution Home Treatment teams (CRHTT). There is a drive for services to be recovery orientated; however, there is little evidence about the degree to which community services achieve this for people with a diagnosis of BPD when in crisis. Research Aim: To understand the perceptions held by CRHTT clinicians about their provision of recovery‐orientated acute care, for people with a diagnosis of BPD. Method: From a purposive sample of a single CRHTT, seven registered mental health nurses were interviewed and Braun and Clarke's thematic analysis framework was used to interpret the data. Results: Five themes emerged: person‐centred care; the timing is wrong; inconsistent staffing; the risks are too great; and BPD as a label. Discussion: The results demonstrate tensions between a drive to deliver person‐centred care and a range of challenges that inhibit this, with the possibility of reframing a recovery approach as "recovery‐ready". Implications for Practice: A whole‐system approach is required to enable a consistent recovery‐oriented approach, but research is also needed for brief interventions specific to this context. [ABSTRACT FROM AUTHOR]
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- 2023
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47. 'In practice it can be so much harder': Young people's approaches and experiences of supporting friends experiencing domestic abuse.
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Daw, Jennifer, Salisbury, Laura, Hay, Susie, and Jacob, Suzanne
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FRIENDSHIP ,SOCIAL support ,FOCUS groups ,DOMESTIC violence ,HELP-seeking behavior ,INTERVIEWING ,QUALITATIVE research ,RESEARCH funding ,THEMATIC analysis ,ADULTS - Abstract
Young people are more likely to seek help about abusive relationships from friends, rather than adults or professionals, irrespective of gender, age or ethnic group. However, friends may be unequipped to deal with relationship problems and unable to provide adequate emotional or practical support. The aim of this paper is to explore how young people would support friends if they were seeking help or shared experiences of abuse. Qualitative findings drawn from a larger UK mixed‐methods study are used to explicate this. Data was gathered using 16 focus groups and one interview with girls, young women and non‐binary young people aged 13 to 24 years. Thematic analysis provided six themes pertaining to supporting friends and help‐seeking around relationship abuse. Findings showed young people recommended supporting friends in a non‐judgemental way to keep conversations open and help them recognise unhealthy behaviours. However, young people confirmed this is a difficult topic and many would feel fearful, helpless and under pressure. Conversations illustrated the need for more awareness of non‐physical abuse and resources specifically aimed at young people to enable them to help friends and know where and when to seek professional support. [ABSTRACT FROM AUTHOR]
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- 2023
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48. "Crying on the Bus": First Time Fathers' Experiences of Distress on Their Return to Work.
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Hodgson, Suzanne, Painter, Jon, Kilby, Laura, and Hirst, Julia
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FATHERHOOD & psychology ,PARENTAL leave ,CRYING ,GROUNDED theory ,RESEARCH methodology ,INTERVIEWING ,GUILT (Psychology) ,JOB involvement ,SOUND recordings ,DESCRIPTIVE statistics ,EMPLOYMENT reentry ,STATISTICAL sampling ,POLICY sciences ,PSYCHOLOGICAL distress ,FATHER-child relationship - Abstract
There is increasing research interest in the experiences of new fathers taking paternity leave, but less insight into men's experiences of returning to work after the birth of their first baby. For many men in the UK context, this could take place immediately after the birth or after one or two weeks of paternity leave. This paper utilizes data from a UK-based study whilst also drawing on international literature and policy contexts. A constructivist grounded theory method was adopted to generate theory from the data gathered. Twelve new fathers shared their experiences in this study by participating in audio-recorded, semi-structured interviews. This paper focuses on fathers' experiences of negotiating the workplace as part of an overall theoretical framework related to broader transitions to fatherhood and sheds light on the distress, guilt and psychological challenges that the participants experienced when they initially returned to work. Whether fathers did or did not explicitly describe distress at this time, they all described a change in their worker identity, which for some participants led to uncertainty in the workplace. Men returning to work at this time in the postnatal period are vulnerable to experiencing distress. Flexibility and support in the workplace could be protective of their mental health. Finally, policy and practice developments are offered to support men's transitions to fatherhood in the workplace context. [ABSTRACT FROM AUTHOR]
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- 2023
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49. Situational expectations and surveillance in families affected by dementia: organising uncertainties of ageing and cognition.
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Fletcher, James Rupert
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DEMENTIA risk factors ,PUBLIC health surveillance ,AGE distribution ,COGNITION ,INTERVIEWING ,DEMENTIA patients ,PATIENTS' attitudes ,FAMILY attitudes ,HEALTH literacy ,AGING ,DEMENTIA ,SYMPTOMS - Abstract
Recent political processes have rendered people with dementia an increasingly surveilled population. Surveillance is a contentious issue within dementia research, spanning technological monitoring, biomarker research and epidemiological data gathering. This paper explores surveillance in the relationships of people affected by dementia, how older relatives both with and without diagnoses are surveilled in everyday interactions, and the importance of expectations in guiding surveillance. This paper presents data from 41 in-depth interviews with people affected by dementia living in the community in the United Kingdom. Agedness was a key contributor to expectations that a person may have dementia, based on previous experiences, media accounts and wider awareness. Expectations provoked surveillance in interactions, with participants looking for signs of dementia when interacting with older relatives. Older people also enacted self-surveillance, monitoring their own behaviour. Various actions could be attributed to dementia because interpretation is malleable, partly vindicating expectations while leaving some uncertainties. Expectant surveillance transformed people's experiences because they organised their own actions, and interpreted those of others, in line with pre-existing meanings. The ability to interpret behaviours to fit expectations can bring coherence to uncertainties of ageing, cognition and dementia, but risks ascribing dementia to many older people who straddle those uncertainties. [ABSTRACT FROM AUTHOR]
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- 2022
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50. 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]
- Published
- 2023
- Full Text
- View/download PDF
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