IntroductionHome mechanical ventilation can be used to manage symptoms of breathlessness and sustain life for people living with motor neuron disease (plwMND). In the UK, less than 1% of plwMND use ...tracheostomy ventilation (TV). This contrasts with some other countries, where rates are much higher. Due to a lack of evidence about its feasibility, cost-effectiveness or outcomes, TV is not covered in the UK National Institute for Health and Care Excellence guidance. Most plwMND receiving TV in the UK do so as an unplanned crisis intervention, which can lead to a prolonged hospital stay while a complex care package is arranged. There is insufficient literature addressing the burdens and benefits of TV, how it should be initiated and delivered, and how future care choices for plwMND can be supported. The aim of this research is to provide new understandings of the experiences of plwMND using TV, and those of family members and healthcare professionals (HCPs) involved in their care.Methods and analysisA UK-wide qualitative study with two workstreams: (1) Patient focused case studies (n=6) including plwMND, family members and HCPs to focus on experiences and tasks of daily living from multiple perspectives. (2) Interviews with plwMND (n=10), family members, including bereaved family members (n=10) and HCPs (n=20) on broader experiences and issues relating to use of TV, such as ethical considerations and decision making.Ethics and disseminationEthical approval has been granted by the Leicester South Research Ethics Committee (22/EM/0256). All participants will be asked to provide electronic, written and/or audio recorded informed consent. Study findings will be disseminated in peer-reviewed journals and conference presentations and used to develop new resources for teaching and public information.
IntroductionMore people are living with multimorbidity, defined as two or more long-term physical or mental health conditions. Multimorbidity is associated with poor quality of life and high ...treatment burden. Palliative care identification tools have been developed for use in primary care to seek out patients who could benefit from a palliative approach to their care. There has been little evaluative research on such tools; patient perspectives on the process of identifying their palliative care needs is a significant gap. The aim of this research is to provide new understanding into patient perspectives of the experience of having their palliative care needs identified, and the impact on their healthcare.Methods and analysisThis qualitative study will employ semistructured interviews to elicit the views of participants. We will purposively sample 10–12 adults with advanced serious illness who have been identified by their primary care team as having palliative care needs, and/or are receiving care from specialist palliative care services. A family member or carer may be included in an interview at the participant’s request. A descriptive, thematic analysis will be carried out using the data analysis software NVivo.Ethics and disseminationEthical approval has been granted by the North of Scotland Research Ethics Committee. Study findings will be disseminated in peer-reviewed journals and through conference presentations. Other activities include the development of patient-centred outcomes for clinical practice and policy in relation to the use of palliative care identification tools.Trial registration numberNational Institute for Health Research (NIHR) Clinical Studies Portfolio, UK Clinical Research Network (UKCRN) Study number 51296.
This paper explores how young people who are living with a parent who is dying talk about the future. Drawing on a qualitative, interview study, I argue that young people are able to move ...imaginatively beyond the death of a parent, and in doing so, to maintain a sense of biographical continuity. While thinking about the future, most were able to generate an alternative to the ‘harm story’ typically associated with parental loss. Furthermore, the facility to engage with parental absence in the present enabled young people to make sense of living with dying, and gave meaning to their imagined futures. These findings suggest that young people's narratives of the future may act as a symbolic resource to draw on, albeit one requiring adequate material and social resources to construct. The paper extends the notion of continuing bonds derived from post‐bereavement accounts to suggest that relational experiences of the dead begin prior to bereavement, and may facilitate everyday living in anticipation of significant loss. Enabling young people to imaginatively explore the future may support them in getting by when they are living in these difficult family circumstances.
There are marked inequalities in palliative care provision. Research is needed to understand how such inequalities can be addressed, so that everyone living with advanced illness can receive the care ...they need, when they need it. Research into inequalities in palliative care should be guided by Patient and Public Involvement (PPI) that includes people from diverse backgrounds, who are less likely to receive specialist services. Multi-disciplinary research partnerships, bringing together primary care (the main providers of palliative care to diverse communities) and specialist palliative care, have the potential to work together in new ways to do research to address inequalities and improve palliative care in practice. This report describes a research partnership between primary care and palliative care that aimed to: (1) create opportunities for more inclusive PPI in palliative care research, (2) co-design new resources to support more equitable, diverse and inclusive PPI for palliative care, (3) propose a new framework for inclusive PPI in palliative care research.
PPI members were recruited via primary care and palliative care research networks from three diverse areas of the UK. A pragmatic, collaborative approach was taken to achieve the partnership aims. Online workshops were carried out to understand barriers to inclusive PPI in palliative care and to co-design resources. Evaluation included a "you said, we did" impact log and a short survey. The approach was informed by good practice principles from previous PPI, and existing theory relating to equity, equality, diversity, and inclusion.
In total, 16 PPI members were recruited. Most were White British (n = 10), other ethnicities were Asian (n = 4), Black African (n = 1) and British mixed race (n = 1). The research team co-ordinated communication and activities, leading to honest conversations about barriers to inclusive PPI. Resources were co-designed, including a role description for an Equity, Equality, Diversity and Inclusion Champion, a "jargon buster", an animation and an online recipe book ( http://www.re-equipp.co.uk/ ) to inform future PPI. Learning from the partnership has been collated into a new framework to inform more inclusive PPI for future palliative care research.
Collaboration and reciprocal learning across a multi-disciplinary primary care and palliative care research partnership led to the development of new approaches and resources. Research team commitment, shared vision, adequate resource, careful planning, relationship building and evaluation should underpin approaches to increase equality, diversity and inclusivity in future PPI for palliative care research.
ABSTRACTObjective:Living with a parent who is approaching the end of life is profoundly troubling for young people. Research indicates that family communication about life-limiting parental illness ...can influence how young people manage living with dying. In particular, open communication between family members has been shown to be helpful. This paper reports on a study of young people's experiences of family interaction when a parent is dying and considers the practice of open communication in the context of young people's involvement in giving and receiving family care.
A narrative approach was employed based on in-depth semistructured interviews with 10 young people (aged 13-21) living with a parent thought to be in the last year of life.
Young people's attitudes toward open communication between family members were more ambivalent and ambiguous than previous research suggests. Parental attempts at open communication were sometimes overlooked by young people, indicating that there may be differences between knowledge given and young people's acknowledgment of sensitive information. Some young people valued open communication as a signifier of the close relationships between family members, while others wanted to exercise more control over what they knew, when, and how. Young people's accounts challenged the positioning of young people as passive recipients of information. Young people were active in shaping family communication in their everyday lives, and deliberative acts of speaking or remaining silent were one way in which young people exercised care for themselves and others.
This study extends research on communication within families when a parent has a life-limiting illness and suggests that supporting young people's agency in determining how they receive information may be more beneficial than promoting open communication between family members.
Editorial. Looks at the pattern of the 2019 measles epidemic in New Zealand, the reasons for the resurgence of measles, management strategies undertaken by the health sector. Source: National Library ...of New Zealand Te Puna Matauranga o Aotearoa, licensed by the Department of Internal Affairs for re-use under the Creative Commons Attribution 3.0 New Zealand Licence.
Care home residents are vulnerable to severe outcomes from infections such as COVID-19 and influenza. However, measures to control outbreaks, such as care home closures to visitors and new ...admissions, have a detrimental impact on their quality of life. Many infections and outbreaks could be prevented but the first step is to measure them reliably. This is challenging in care homes due to the lack of data and research infrastructure. During the pandemic, the VIVALDI study measured COVID-19 infections in residents and staff by partnering with care providers and using routinely collected data. This study aims to establish sentinel surveillance and a research database to enable observational and future interventional studies in care homes. The project has been co-produced with care providers, staff, residents, relatives, and researchers. The study (October 2023 to March 2025) will explore the feasibility of establishing a network of 500-1500 care homes for older adults in England that is underpinned by a linked data platform. No data will be collected from staff. The cohort will be created by regularly extracting resident identifiers from Digital Social Care Records (DSCR), followed by pseudonymisation and linkage to routinely collected datasets. Following extensive consultation, we decided not to seek informed consent from residents for data collection, but they can ‘opt out’ of the study. Our goal is to be inclusive, and it is challenging to give every resident the opportunity to ‘opt in’ due to cognitive impairment and the requirement for consultees. The project, and all requests to use the data will be overseen by relatives, residents, staff, and care providers. The study has been approved by the Health Research Authority Confidentiality Advisory Group (23/CAG/0134&0135) and the South-West Frenchay Research Ethics Committee (23/SW/0105). It is funded by the UK Health Security Agency.
This study examines how authentic leadership influences team performance via the mediating mechanism of team reflexivity. Adopting a self-regulatory perspective, we propose that authentic leadership ...will predict the specific team regulatory process of reflexivity, which in turn will be associated with two outcomes of team performance, effectiveness and productivity. Using survey data from 53 teams in three organizations in the United Kingdom and Greece and controlling for collective trust, we found support for our stated hypotheses with the results indicating a significant fully mediated relationship. As predicted the self-regulatory behaviors inherent in the process of authentic leadership served to collectively shape team behavior, manifesting in the process of team reflexivity, which, in turn, positively predicted team performance. We conclude with a discussion of how this study extends theoretical understanding of authentic leadership in relation to teamwork and delineate several practical implications for leaders and organizations.
This article draws on a narrative study of young people with a parent who is at the end of life to examine how family lives are troubled by life-limiting parental illness. Young people struggled to ...reconcile the physical and emotional absence of family members with meanings of 'family'; the extent to which young people could rely on family to 'be there' in these troubling circumstances was of practical, emotional and moral significance. Our discussion is situated in the context of an English end of life care policy predicated on the ideal of a good death as one that takes place at home accompanied by family members. We explore how the shift away from family as a site for nurturing children towards family as a space to care for the dying is experienced by young people, and consider how these competing moral imperatives are negotiated through relational practices of care.
More older people are living alone in the UK, thereby increasing the prospect of dying alone at home. Lone deaths tend to be regarded as bad deaths, in that they contravene notions of accompaniment ...and open awareness espoused in UK end of life care policies. We describe a media analysis of dying alone conducted in two phases. First, we revisited a previous media analysis to examine whether news reporting of dying alone has changed. Second, we focussed on a single case study to explore how an account of a lone death unfolded during the days following its discovery. We found that dying alone remains a threat to individual and collective moral reputations. However, we also identified reports in which dying alone was presented as acceptable in some circumstances, and as congruent with aspects of a good death. We suggest that dying alone can be made good through media reporting, reflecting the individual choice and autonomy associated with a good death. There is potential for news media to revise cultural scripts of dying, largely based on the experiences of people dying under medical supervision.
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