Involving patients and the public in nursing PhD projects: practical guidance, potential benefits and points to consider.

BACKGROUND: Funders, academic publishers and governance bodies increasingly require research to involve patients and the public. This also enables nurse researchers to increase the visibility of scholarly nursing roles, which are poorly understood by the public. There are different approaches to involvement, and a wealth of guidance about how it can and should be implemented. Less is known about how it should be done in the context of a nursing PhD. AIM: To discuss the experiences of the authors' nursing research group in involving patients and the public in PhD research, reflect on the benefits to be gained from doing so, and highlight considerations for those planning to involve patients and the public in their doctoral research projects. Discussion It is essential to decide in advance of a study who you will involve, how to reach them and why you are involving patients and the public. Some potential benefits of involvement are: more accessible documentation, refined methods and better research outputs created in collaboration with patients and the public. CONCLUSION: Patients and the public should be involved in nursing PhD projects. Not only does this improve the quality of the research and raise the profile of nursing research, but it provides the opportunity for students to learn skills that they can develop further throughout their academic careers. IMPLICATIONS FOR PRACTICE: Obtaining high-quality patient and public involvement is an important skill for nurse researchers. The first steps in acquiring this skill should be taken during research training.

Caring for people in prison with palliative and end-of-life care needs.

PURPOSE OF REVIEW: The prison population is growing and ageing, and many people will die from natural causes while incarcerated. This article provides a contemporary review of key issues related to palliative and end-of-life care in prisons. RECENT FINDINGS: Few countries have integrated prison hospices. Palliative care needs may go unrecognised in prison. Older offenders may not trust the prison to care for them and may benefit from segregation. Cancer remains a major cause of death. Training staff remains a priority, and technology can help facilitate this. The coronavirus disease 2019 (COVID-19) had a significant impact on prisons, less is known about its impact on palliative care. Compassionate release is underutilised, and the issue of medically assisted dying adds complexity to decisions around end-of-life care. Peer carers can provide reliable symptom assessment. Family members are often absent when someone dies in prison. SUMMARY: Palliative and end-of-life care in prisons requires a joined-up approach, and staff must understand the challenges of both this and custodial care in general. The relational network both inside and outside of the prison should be involved, and when possible and appropriate, we should consider alternatives to dying whilst incarcerated, such as compassionate release.

Multimorbidity, disease count, mortality and emergency care use in persons attending the emergency department: a cross-sectional data-linkage study.

Background: Multimorbidity (two or more concurrent chronic conditions) is associated with poorer health outcomes and increased healthcare utilisation in primary care and general populations. Less is known about the prevalence of multimorbidity in emergency department attenders, or its association with poor outcomes in this population. Aim: This study sought to explore the relationship between multimorbidity, mortality and health-care utilisation in a large urban cohort of persons attending emergency departments. Methods: Validated algorithms for the identification of 28 chronic conditions from ICD-10 codes were deployed on a cross-sectional sample of patients attending emergency departments in Glasgow, Scotland between April 2019 and March 2020. Analysis was conducted on complete cases (n=63,328) and compared with results from data with imputed missing values (n=75,723). Models adjusted for age, sex, deprivation and ethnicity were fitted to test for the association between (i) multimorbidity, (ii) complex multimorbidity, (iii) disease count and the following outcomes: admission to hospital, reattendance at 30 and 90 days, and death during admission. Results: Multimorbidity, complex multimorbidity and disease count were significantly associated with hospital admission and emergency department reattendance. Those with 1-3 conditions were at increased risk of inpatient mortality. Conclusion: This study further evidences the impact of multimorbidity and disease burden on health-care use, and mortality to a lesser extent. Deployed algorithms were sufficiently sensitive to detect associations, despite limited access (21 months) to secondary-care data. This should allow for the construction of more robust models to prospectively identify persons at risk of poor outcomes in similar populations.

A mixed-methods systematic review of nurse-led interventions for people with multimorbidity.

AIMS: To identify types of nurse-led interventions for multimorbidity and which outcomes are positively affected by them. DESIGN: Mixed-methods systematic review following the Joanna Briggs Institute (JBI) methods for convergent-integrated reviews. PROSPERO ID: CRD42020197956. DATA SOURCES: Cochrane CENTRAL, CINAHL, Embase and MEDLINE were searched in October 2020. Grey literature sources included OpenGrey, the Journal of Multimorbidity and Comorbidity and reference mining. REVIEW METHODS: English-language reports of nurse-led interventions for people with multimorbidity were included based on author consensus. Two reviewers performed independent quality appraisal using JBI tools. Data were extracted and synthesized using a pre-existing taxonomy of interventions and core outcome set. RESULTS: Twenty studies were included, with a median summary quality score of 77.5%. Interventions were mostly case-management or transitional care interventions, with nurses in advanced practice, support to self-manage conditions, and an emphasis on continuity of care featuring frequently. Patient-centred outcomes such as quality of healthcare and health-related quality of life were mostly improved, with mixed effects on healthcare utilization, costs, mortality and other outcomes. CONCLUSION: Interventions such as case management are agreeable to patients and transitional care interventions may have a small positive impact on healthcare utilization. Interventions include long-term patient management or short-term interventions targeted at high-risk junctures. These interventions feature nurses in advanced practice developing care plans in partnership with patients, to simplify and improve the quality of care both in the long and short-term. IMPACT: This is the first mixed-methods review which includes all types of nurse-led interventions for multimorbidity and does not focus on specific comorbidities or elderly/frail populations. Using adapted consensus-developed frameworks for interventions and outcomes, we have identified the common features of interventions and their overall typology. We suggest these interventions are of value to patients and healthcare systems but require localization and granular evaluation of their components to maximize potential benefits.

Caring, sharing, preparing and declaring: how do hospices support prisons to provide palliative and end of life care? A qualitative descriptive study using telephone interviews.

BACKGROUND: Older adults in prison have complex healthcare needs, and many will need palliative care before their sentence ends. Compared with prison-based hospices, little is known about the role played by community-based hospices in providing palliative care to people in prison. AIM: To describe the roles Scottish hospices have adopted to support prisons to provide palliative care, and to discuss the international relevance of these findings in addressing the knowledge gap around community hospices supporting people in prison. DESIGN: A qualitative descriptive study using semi-structured telephone interviews. SETTING/PARTICIPANTS: Representatives from all Scottish adult hospices were invited to take part in a short telephone interview and all (N = 17) participated. RESULTS: Four roles were identified: caring, sharing, preparing and declaring. Most hospices employed different combinations of roles. Five (30%) hospices were engaged in caring (providing direct care at the prison or the hospice). Eleven (65%) hospices were engaged in sharing (supporting the prison by sharing knowledge and expertise). Eleven (65%) hospices were engaged in preparing (making preparations to support prisons). All seventeen hospices were described as declaring (expressing a willingness to engage with prisons to provide care). CONCLUSIONS: There are differences and similarities in the way countries provide palliative care to people in prison: many are similar to Scotland in that they do not operate prison-based hospices. Variations exist in the level of support hospices provide. Ensuring that all people in prison have equitable access to palliative care will require close collaboration between prisons and hospices on a national level.

Palliative and end of life care in prisons: a mixed-methods rapid review of the literature from 2014-2018.

OBJECTIVES: To explore current practice in relation to palliative and end of life care in prisons, and to make recommendations for its future provision. DESIGN: A rapid literature review of studies using qualitative, quantitative and mixed-methods, with a narrative synthesis of results. DATA SOURCES: Six databases searched between January 2014 to December 2018: ASSIA, CINAHL, Embase, MEDLINE, National Criminal Justice Reference Service Abstracts and Scopus. ELIGIBILITY CRITERIA: Primary research articles reporting qualitative or quantitative findings about palliative and end of life care in prisons, published in peer-reviewed, English language journals between January 2014 to December 2018. PARTICIPANTS: Prisoners, prisoners' families, prison healthcare staff and other prison staff. DATA EXTRACTION/SYNTHESIS: Data extracted included: citation, design, aim, setting, sample/population, methods and key findings. Data were analysed thematically then subject to a narrative synthesis in order to answer the research questions. QUALITY APPRAISAL: Two researchers independently appraised articles using the Qualsyst tool, by Kmet et al (2004). Aggregate summary quality scores are included with findings. Articles were not excluded based on quality appraisal. RESULTS: 23 articles were included (16 qualitative, 6 quantitative, 1 mixed methods). Top three findings (by prevalence) were: fostering relationships with people both inside and outside of prison is important to prisoners with palliative and end of life care needs, inmate hospice volunteers are able to build and maintain close relationships with the prisoners they care for and the conflicting priorities of care and custody can have a negative impact on the delivery of palliative and end of life care in prisons. CONCLUSIONS: The key findings are: relationships are important to prisoners at the end of life, inmate hospice volunteers can build close bonds with the prisoners in their care and the prison environment and regime conflicts with best practices in palliative and end of life care. Directions for future research are also identified. PROSPERO REGISTRATION NUMBER: PROSPERO ID: CRD42019118737. Registered January 2019.