Randomised feasibility study of a novel experience-based internet intervention to support self-management in chronic asthma.

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Boundary spanning and identity work in the clinical research delivery workforce: a qualitative study of research nurses, midwives and allied health professionals in the National Health Service, United Kingdom.

BackgroundResearch nurses, midwives and allied health professionals are members of an important emergent profession delivering clinical research and, in the United Kingdom, have been the focus of considerable investment by the National Institute for Health Research (NIHR). This paper considers the experiences of research nurses, midwives and allied health professionals in relation to professional identity work, recognizing these are coproduced alongside others that they interact with (including patients, clinical staff and other research staff).MethodsSemi-structured interviews were conducted with 45 nurses, midwives and allied health professionals in the UK about their experiences of working in research delivery. Interviews were transcribed verbatim and thematically coded and analysed.ResultsOur analysis highlights how research nurses, midwives and allied health professionals adjust to new roles, shift their professional identities and undertake identity work using uniforms, name badges and job titles as they negotiate complex identities.ConclusionsResearch nurses, midwives and allied health professionals experience considerable challenges as they enter and transition to a research delivery role, with implications for their sense of professional identities. A change in the work that they undertake and how they are (or perceive they are) viewed by others (including clinical non-research colleagues and patients) has implications for their sense of professional and individual identity. The tensions involved extend to their views on symbols of professional identity, such as uniforms, and as they seek to articulate and demonstrate the value of their conjoined role in research and as a healthcare professional, within the unfolding landscape of health research. We embed our study findings in the context of the newly emerging clinical research practitioner workforce, which further exacerbates and complicates the role and identity complexity for nurses, midwives and allied health professionals in research delivery

Who defines the impact of research? : A patient-centred opinion and call for action.

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Understanding the child-doctor relationship in research participation : a qualitative study

Funding Data collection for the Dutch interviews was funded by the University of Groningen as part of the MD/PhD program of Malou Luchtenberg. The UK data collection was supported by the National Institute for Health Research. The Academy Ter Meulen Grant provided by the Royal Netherlands Academy of Arts and Sciences enabled the research stay of ML at the Health Services Research Unit, University of Aberdeen, and supported this collaboration. The funders had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision o submit the manuscript for publication. Acknowledgements: We want to thank all participants who were interviewed in the UK and the Netherlands. We thank Lesley Powell, who was responsible for the primary data collection in the UK. In addition, we want to show our gratitude to the Academy Medical Sciences Fund for providing Malou Luchtenberg with the Academy Ter Meulen Grant to enable her research stay at the Health Services Research Unit, University of Aberdeen that supported this collaboration.Peer reviewedPublisher PD

‘You probably won’t notice any symptoms’ Blood pressure in pregnancy:discourses of contested expertise in an era of self-care and responsibilisation

Pregnancy is not a disease or illness, but requires clinical surveillance as life-threatening complications can develop. Preeclampsia, one such potentially serious complication, puts both mother and baby at risk. Self-monitoring blood pressure in the general population is well established, and its potential in pregnancy is currently being explored. In the context of self-monitoring, the information and guidance given to women regarding hypertension, and the literature they themselves seek out during pregnancy, are vital to perceptions of disease risk and subsequent responses to, and management of, any symptoms. Drawing on online, offline, official, and unofficial sources of information, discourses are examined to provide analysis of how self-responsibilization is reflected in contemporary information, advice, and guidance drawn from multiple sources. A paradox emerges between the paternalistic and lay discourses that seek to challenge and regain control. Findings are discussed in the context of Foucault’s governmentality and medical power

Life interrupted and life regained? Coping with stroke at a young age

Stroke is a leading cause of disability across the developed world, affecting an increasing number of younger people. In this article, we seek to understand the experience of stroke as a disabling life situation among young people and the strategies that they use to recover and cope. Directed content analysis was conducted from interviews with 17 community-dwelling stroke survivors aged 55 years and younger across the United Kingdom. The sample was drawn from a larger maximum variation sample of stroke survivors. Using the sociological concepts of biographical disruption and biographical repair as a guide, excerpts from the interviews pertaining to aspects of the patients’ life that were interrupted, in addition to how they coped with the changes, were selected and analysed. All individuals described an ‘‘altered sense of self,’’ a theme that included loss of identity, family disruption, and/or loss of valued activities. Individuals sought to adapt their sense of self by seeking external support, by restoring normality, and/or through positive reflection. Despite the adapted self that emerged, most individuals continued to experience impairments. While young stroke survivors adapt to their illness over time, they continue to experience impairments and disruptions in their personal and work lives.Aholistic model of rehabilitation that helps individuals regain the capacity for everyday activities related to work, family life, and leisure can begin to address the emotional ramifications of diseases such as stroke, restore wellness, and work towards minimizing the burden felt by family caregivers and children

Life interrupted and life regained? Coping with stroke at a young age

Stroke is a leading cause of disability across the developed world, affecting an increasing number of younger people. In this article, we seek to understand the experience of stroke as a disabling life situation among young people and the strategies that they use to recover and cope. Directed content analysis was conducted from interviews with 17 community-dwelling stroke survivors aged 55 years and younger across the United Kingdom. The sample was drawn from a larger maximum variation sample of stroke survivors. Using the sociological concepts of biographical disruption and biographical repair as a guide, excerpts from the interviews pertaining to aspects of the patients’ life that were interrupted, in addition to how they coped with the changes, were selected and analysed. All individuals described an ‘‘altered sense of self,’’ a theme that included loss of identity, family disruption, and/or loss of valued activities. Individuals sought to adapt their sense of self by seeking external support, by restoring normality, and/or through positive reflection. Despite the adapted self that emerged, most individuals continued to experience impairments. While young stroke survivors adapt to their illness over time, they continue to experience impairments and disruptions in their personal and work lives.Aholistic model of rehabilitation that helps individuals regain the capacity for everyday activities related to work, family life, and leisure can begin to address the emotional ramifications of diseases such as stroke, restore wellness, and work towards minimizing the burden felt by family caregivers and children

Hearing the voices of older adult patients: processes and findings to inform health services research

Background Clinical academic research and service improvement is planned using Patient and Public Involvement and Engagement (PPIE) but older PPIE participants are consulted less often due to the perception that they are vulnerable or hard to engage. Objectives To consult frail older adults about a recently adopted service, discharge to assess (D2A), and to prioritise services improvements and research topics associated with the design and delivery of discharge from hospital. To use successive PPIE processes to enable a permanent PPIE panel to be established. Participants Following guidance from an established hospital PPI panel 27 older adult participants were recruited. Participants from Black, Asian and Minority Ethnic (BAME) communities, affluent and non-affluent areas and varied social circumstances were included. Methods Focus groups and individual interviews were conducted in participants own homes or nearby social venues. Results Priorities for discharge included remaining independent despite often feeling lonely at home; to remain in hospital if needed; and for services to ensure effective communication with families. The main research priority identified was facilitating independence, whilst establishing a permanent PPIE panel involving older adults was viewed favourably. Conclusions Taking a structured approach to PPIE enabled varied older peoples’ voices to express their priorities and concerns into early discharge from hospital, as well as enabling the development of health services research into hospital discharge planning and management. Older people as participants identified research priorities after reflecting on their experiences. Listening and reflection enabled researchers to develop a new “Community PPIE Elders Panel” to create an enduring PPIE infrastructure for frail older housebound people to engage in research design, development and dissemination

Is bureaucracy being busted in research ethics and governance for health services research in the UK?:Experiences and perspectives reported by stakeholders through an online survey

Acknowledgements: We would like to thank the Board of Trustees of HSRUK for support and advice throughout study. Thank you to all respondents to the survey for contributing their data and views. The HRA and NIHR are also warmly acknowledged for their continued support throughout the study.Peer reviewedPublisher PD