3,733 research outputs found
“I don’t think they really link together, do they?” An ethnography of multi-professional involvement in advance care planning in nursing homes
No full textBackground: given the globally ageing population, care homes have an important role in delivering palliative and end-of-life care. Advance Care Planning (ACP) is promoted to improve the quality of end-of-life care in this setting. While many professionals can be involved in ACP, little is known about what influences multi-professional involvement and how multi-professional working impacts the ACP process in the UK. This study investigated multi-professional practice in relation to ACP in nursing homes.Design and methods: an ethnography was undertaken in two UK nursing homes using multiple methods of data collection: observations, interviews and document review. Participants included: nursing home residents (n=6), relatives (n=4), nursing home staff (n=19) and visiting health and social care professionals (n=7). Analysis integrated thematic analysis, mapping of resident ACP trajectories and documentary analysis.Findings: this paper suggests that multi-professional and relatives’ involvement in ACP was disjointed. Continuity and coordination were disrupted by misalignment of visiting professional and nursing home organisational structures. Findings show a ‘knotworking’ approach to teamwork and power imbalance between nursing home staff and visiting professionals, such as general practitioners. While residents wished their relatives to be involved in their ACP, this was not formally recognised, and limited support existed to facilitate their involvement.Conclusion: the structure and organisation of multi-professional and relatives’ involvement in ACP led to fragmentation of the process. This marginalised the voice of both the resident and nursing home staff, thereby limiting ACP as a tool to enhance quality of end-of-life care
Conceptual confusion: a barrier for multi-professional involvement in advance care planning in nursing homes - an ethnographic study
No full textObjectives: how health and social care professionals need to work together to deliver advance care planning (ACP) in nursing homes is not fully understood, with a reliance on professionals external to the nursing home to support ACP in the United Kingdom. The objectives of this study were to (a) examine the factors that influence multi-professional involvement in the ACP process within nursing homes and (b) explore how multi-professional working impacts the ACP process in nursing homes.Methods: using ethnography, data was collected through observation, interviews and document review from 36 participants including residents (n = 6), relatives (n = 4), nursing home staff (n = 19) and visiting professionals (n = 7). Data analysis combined thematic analysis, mapping of ACP trajectories for participant residents, and documentary analysis of nursing home policies.Results: there was conceptual confusion around ACP. How ACP was understood and what was prioritised for inclusion varied between residents and professionals, and between different professionals. That ACP was frequently integrated with routine care planning was not recognised in how professionals accounted for their ACP practice. Professionals prioritised biomedical concerns, despite this not reflecting resident priorities and policy suggesting a broader definition. This created difficulties in enacting ACP, with a holistic understanding of resident wishes not always captured.Conclusions: a shared understanding of ACP was not consistently evident from those tasked with its enactment. This, combined with professional construction of ACP in biomedical terms, limits multi-professional working and can prevent a person-centred process being achieved for nursing home residents
Making the invisible visible: unpaid carers who experience domestic abuse from end-of-life care recipients: the CEDA study
No full textBackground: in England and Wales, one in five adults have experienced domestic abuse. This equates to more than 2.4 million people. Many people at end-of-life (EOL), or living with a life-limiting-illness, depend on an unpaid carer, often a family member to support them emotionally and with day-to-day living. Unpaid carers make crucial contributions to end-of-life care (EOLC), off-setting health and social care costs and enabling patient choice. In England, more than half a million people provide unpaid EOLC; the role is often unplanned and associated with poor health, and adverse social and financial outcomes. Carers can also be at risk of domestic abuse from the person for whom they provide EOLC. In 2021/2022 in the UK, one in ten domestic homicide victims was a carer, with the care-recipient being the perpetrator in more than 50% of cases.Health and social care professionals (HSCPs) are well placed to support carers experiencing domestic abuse. However, they often lack understanding and confidence to ask about or respond to abuse when encountered in practice. Gaps in training and lack of guidance on domestic abuse in the EOL context have resulted in professionals being under-prepared to fully comprehend the complexities of abuse in caring relationships. This has led to calls for mandatory training for frontline workers, especially those in social care roles. To date, little attention has been paid to unpaid carers’ experiences of domestic abuse which is a prerequisite for developing targeted interventions and support for EOL carers based on their specific needs and characteristics. To introduce the CEDA study which explores experiences and support needs of adult carers who have been abused by an EOL care-recipient and will use findings to co-produce a resource for HSCPs to increase their understanding and confidence and improve wellbeing and safety for EOL carers.Methodology and Methods: a 24 month qualitative study using co-production methodology and working in partnership with people with lived experience, community groups and organisations, HSCPs, specialist domestic abuse organisations and key public service representatives through a Community of Practice (CoP). This will enable inclusion of diverse participants, the voices of those from marginalized and disadvantaged communities to be listened to and heard and who are best placed to advise how services on how to respond. Undertaking this work through the CoP facilitates partnership working, strengthening relationships between health and social care, the third sector and voluntary services. Interviews will explore adult carer victims’ experiences and focus groups/interviews will capture the views and experiences of HSCPs and other key stakeholders. Data will be analysed using the Framework approach and informed by Hill-Collins and Bilge’s theoretical framework to enable an intersectional understanding of the issues.Anticipated Outcomes: findings will provide a robust evidence base and offer new insights to underpin guidance for HSCPs on how to identify and respond to carers experiencing domestic abuse in the EOL context, including referral pathways, and empowering carers to manage the situation as they wish.<br/
Mind the gap! Building and enhancing research capacity in a local authority through evaluation of a novel domestic abuse intervention
No full textBackground: in the UK continuous cuts to public services present a range of challenges for local authorities (LAs) and have led to an increased appetite for high quality and timely evidence to improve public health and social care outcomes and reduce inequalities. More recently, involvement and engagement of LAs in research has been identified as a strategic priority for the National Institute for Health and Care Research (NIHR) to increase research capacity and capability with the social care sector and bridge the gap between practice and academia. While there is increased enthusiasm for research by LAs, and acknowledgement of its value to underpin policy and practice, there are barriers to its use resulting in poor take up of findings. Researcher-in residence (also known as embedded researcher) roles, which are well established in the National Health System (NHS) have been more recently introduced in LAs. These roles offer a way to bridge the academic-practice/policy gap and a mechanism for building and enhancing research capacity either as consumers, producers, stakeholders or a combination of these roles. They also offer benefits for universities in terms of maximising impact of research that is generated. Aim: this presentation will explore the experiences of undertaking an evaluation study, as part of a LA researcher-in-residence role, of a novel intervention that provides a holistic, family-centred approach to working with families impacted by domestic abuse. Factors and processes that contribute towards generating evidence relevant to LAs to inform policy, practice and commissioning will be outlined as well as a discussion of challenges of conducting research with and within LAs.Methods: a scoping study within the LA was undertaken to understand how domestic abuse is managed within and across services. This involved: stakeholder analysis; informal conversations with key stakeholders, and documentary analysis of relevant policy and strategy documents. Data from the scoping work was used to identify research priorities and shared at LA stakeholder meetings to gain consensus on a project. Following identification of a project, an evaluation of the domestic abuse male engagement worker intervention, funding was secured from the local NIHR Applied Research Collaboration for additional researcher time. Researchers worked with the male engagement worker team to co-develop a protocol for a 12-month mixed-method study, gain ethics and LA approvals, facilitate access to data and identify potential participants.Findings : within the local authority there was support for the researcher-in-residence role and the evaluation with recognition of its value to inform practice and decision-making for future commissioning. Both the researcher-in-residence and evaluation provided opportunities for partnership working between researchers and LA staff, building research capacity, and knowledge mobilisation. Undertaking the evaluation highlighted complexities for academics undertaking research with local authorities including: differing expectations and ways of working, accessing data, misaligned timelines, differing terminology, what counts as evidence. Conclusion: the researcher-in-residence role offered an opportunity to undertake research at the boundary between academia and local government and an understanding of the organisational and relational complexities to be navigated to successfully generate evidence that can inform policy and practice decision-making.<br/
Developing a co-produced web-based implementation toolkit to translate research into real world settings (Runner-up poster award)
No full textEditorial: domestic violence and abuse: increasing global and intersectional understanding
No full textThe decision-making process of transferring patients home to die from an intensive care unit in mainland China: A qualitative study of family members’ experiences
No full textObjectives: To map the decision-making process of family members involved in transferring a critically ill patient home to die from an intensive care unit in mainland China and to explore the experiences of those family members. Design: A constructivist qualitative study. Setting: One hospitals intensive care unit in Southeast China. Methods: Thirteen adult family members (of ten patients) who participated in decision-making related to transferring a relative home to die from the intensive care unit were purposively selected. Data were collected via interviews and analysed applying thematic analysis. Findings: A two-stage decision-making process was identified. Family decision-making was mediated by factors including: accepting the impending death and hope that the patient would not die; time pressures in which decisions had to be made, and the challenges of meeting cultural expectations of a home death. Transfer home was a family-centred decision constrained by a gender-based hierarchy restricting the involvement of different family members. Conclusion: The stages and key factors in the decision-making process of family members when involved in transferring a patient home to die from an intensive care unit in China are rooted and informed by cultural expectations and limits in the current healthcare system regarding end-of-life care options. Understanding the climate in which family members must make decisions will facilitate supportive interventions to be implemented by healthcare professionals. Further empirical research is needed to explore family members’ needs when the patient has been transferred and dies at home in mainland China. Implications for Clinical Practice: Healthcare professionals need to understand the challenges family members face when deciding to transfer a relative home to die from an intensive care unit. For example time pressures can limit the choices of family members so that to provide them with timely, ongoing, realistic updates for a greater involvement of family members in generating end of life care plans could be beneficial.
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The Volcano Within: A study of women’s lived experience of the journey through natural menopause
No full textThis dataset supports the thesis titled: The Volcano Within: A study of women’s lived experience of the journey through natural menopause
The dataset can be requested via the attached data request form by bona fide researchers with ethical approval.</span
Dataset in support of the Southampton doctoral thesis 'Understanding healthcare professionals’ lived experiences of death in the Emergency Department and the influence of personal values and norms'
No full textData analysis of the 17 interview transcripts, including quotes from the original transcript, codes, emergent themes and superordinate themes, for each participant individualy. Participant names have been pseudonymized to protect anonymity and confidentiality.
The file is a compressed zip file that requires to be decompressed before use. Decompression can happen in Windows Explorer. The data folder contains 17 files in Microsoft Word format. Microsoft Word or any other application that supports doc or docx files can be used to open the files.</span
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