The concept of knowledge co-production is used in health services research to describe partnerships (which can involve researchers, practitioners, managers, commissioners or service users) with the purpose of creating, sharing and negotiating different knowledge types used to make improvements in health services. Several knowledge co-production models have been proposed to date, some involving intermediary roles. This paper explores one such model, researchers-in-residence (also known as 'embedded researchers').In this model, researchers work inside healthcare organisations, operating as staff members while also maintaining an affiliation with academic institutions. As part of the local team, researchers negotiate the meaning and use of research-based knowledge to co-produce knowledge, which is sensitive to the local context. Even though this model is spreading and appears to have potential for using co-produced knowledge to make changes in practice, a number of challenges with its use are emerging. These include challenges experienced by the researchers in embedding themselves within the practice environment, preserving a clear focus within their host organisations and maintaining academic professional identity.In this paper, we provide an exploration of these challenges by examining three independent case studies implemented in the UK, each of which attempted to co-produce relevant research projects to improve the quality of care. We explore how these played out in practice and the strategies used by the researchers-in-residence to address them. In describing and analysing these strategies, we hope that participatory approaches to knowledge co-production can be used more effectively in the future.
Surgery for esophageal cancer offers the hope of cure but might impair quality of life. The operation removes tumors obstructing the esophagus but frequently leaves patients with eating difficulties, leading to weight loss. Maintaining or increasing body weight is important to many patients, both as a means of returning to "normal" and as a means of rejecting the identity of the terminal cancer patient, but surgery radically alters embodied sensations of hunger, satiety, swallowing, taste, and smell, rendering the previously taken-for-granted experience of eating unfamiliar and alien. Successful recovery depends on patients' learning how to eat again. This entails familiarization with physiological changes but also coming to terms with the social consequences of spoiled identity. The authors report findings from in-depth interviews with 11 esophageal cancer patients, documenting their experiences as they struggle to achieve a process of adaptation that is at once physiological, psychological, and social.
Some men attend groups for support with depression and anxiety. There was a strong theme of isolated men, some reluctant to discuss problems with their close family and friends but attending groups. Peer support, reduced stigma and opportunities for leadership were some of the identified benefits of groups. The different types of groups may relate to different potential member audiences. For example, unemployed men with greater mental health and support needs attended a professionally led group whereas men with milder mental health problems attended peer-led groups. Barriers to help seeking were commonly reported, many of which related to cultural norms about how men should behave. General practitioners played a key role in helping men to acknowledge their experiences of depression and anxiety, listening and providing information on the range of support options, including groups. Men with depression and anxiety do go to groups and appear to be well supported by them. Groups may potentially be low cost and offer additional advantages for some men. Health professionals could do more to identify and promote local groups.
PURPOSE The purpose of this study was to explore the perceptions and experiences of health care clinicians working in multidisciplinary teams that include specialist heart failure nurses when caring for the management of heart failure patients. METHODSWe used a qualitative in-depth interview study nested in a broader ethnographic study of unplanned admissions in heart failure patients (HoldFAST). We interviewed 24 clinicians across primary, secondary, and community care in 3 locations in the Midlands, South Central, and South West of England.RESULTS Within a framework of the role and contribution of the heart failure specialist nurse, our study identified 2 thematic areas that the clinicians agreed still represent particular challenges when working with heart failure patients. The first was communication with patients, in particular explaining the diagnosis and helping patients to understand the condition. The participants recognized that such communication was most effective when they had a long-term relationship with patients and families and that the specialist nurse played an important part in achieving this relationship. The second was communication within the team. Multidisciplinary input was especially needed because of the complexity of many patients and issues around medications, and the participants believed the specialist nurse may facilitate team communication. CONCLUSIONSThe study highlights the role of specialist heart failure nurses in delivering education tailored to patients and facilitating better liaison among all clinicians, particularly when dealing with the management of comorbidities and drug regimens. The way in which specialist nurses were able to be caseworkers for their patients was perceived as a method of ensuring coordination and continuity of care.
BackgroundAlthough heart failure has a worse prognosis than some cancers, patients often have restricted access to well-developed end of life (EoL) models of care. Studies show that patients with advanced heart failure may have a poor understanding of their condition and its outcome and, therefore, miss opportunities to discuss their wishes for EoL care and preferred place of death. We aimed to explore the perceptions and experiences of health care professionals (HCPs) working with patients with heart failure around EoL care.MethodsA qualitative in-depth interview study nested in a wider ethnographic study of unplanned admissions in patients with heart failure (HoldFAST). We interviewed 24 HCPs across primary, secondary and community care in three locations in England, UK – the Midlands, South Central and South West.ResultsThe study revealed three issues impacting on EoL care for heart failure patients. Firstly, HCPs discussed approaches to communicating with patients about death and highlighted the challenges involved. HCPs would like to have conversations with patients and families about death and dying but are aware that patient preferences are not easy to predict. Secondly, professionals acknowledged difficulties recognising when patients have reached the end of their life. Lack of communication between patients and professionals can result in situations where inappropriate treatment takes place at the end of patients’ lives. Thirdly, HCPs discussed the struggle to find alternatives to hospital admission for patients at the end of their life. Patients may be hospitalised because of a lack of planning which would enable them to die at home, if they so wished.ConclusionsThe HCPs regarded opportunities for patients with heart failure to have ongoing discussions about their EoL care with clinicians they know as essential. These key professionals can help co-ordinate care and support in the terminal phase of the condition. Links between heart failure teams and specialist palliative care services appear to benefit patients, and further sharing of expertise between teams is recommended. Further research is needed to develop prognostic models to indicate when a transition to palliation is required and to evaluate specialist palliative care services where heart failure patients are included.
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