Nursing
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Item P-114 Towards a bereavement-friendly university: reflections from a university hospice partnership(British Medical Journal Publishing Group, 2025-11-21) Young, Julie; Gardner, Hilary; Tsiris, Giorgos; Beveridge, Joanna; Haraldsdottir, Erna; Hastings, Donna; Elliot, Michelle; Dick, Suzie; Doherty, Beth; Donnelly, Kirsty; Reid, Muriel; Green, Gayle; Mountain, Kristina; Mathieson, Vivian; Luhanga, Lisa; Lansdown, Katrina; Longo, Giacinta; Taylor,ElisabethBackground: The UK Commission on Bereavement states that it is incumbent on society to work together to support those affected by bereavement (UK Commission on Bereavement. Bereavement is everyone’s business: Scotland briefing. 2022), and the Scottish Bereavement Summit Report recommends that bereaved people be supported in their workplace (Good Death, Good Life, Good Grief. Scottish Bereavement Summit final report. 2023). Scotland’s first Bereavement Charter for Children and Adults was developed by a coalition of organisations and launched in 2020. This Charter is human rights-based and provides a set of statements on how bereaved people can be supported (NHS Education Scotland. Scotland launches its first human rights-based Charter for Bereavement. [new item] 2020 Apr 15). To guide organisations to become bereavement-friendly workplaces, the Bereavement Charter Mark (Good Death, Good Life, Good Grief. Bereavement Charter Mark. 2020 [internet]) can be achieved by taking specific actions that demonstrate it is a workplace where staff feel supported in their experiences of loss and grief. Aim: To demonstrate the development of Queen Margaret University as a bereavement-friendly workplace through its partnership with St Columba’s Hospice Care. Method The initial working group consisted of staff from the Divisions of Nursing and Paramedic Science, and Occupational Therapy and Arts Therapies. Working in collaboration with hospice staff, the group achieved the Charter Mark. Since then, the group expanded to incorporate staff from across the university, including Human Resources, and has begun to coordinate the development and implementation of an action plan. This plan aims to create the conditions for bereaved staff to feel supported by the people around them, the university’s governance and its culture. Results: Achievement of the Charter Mark has initiated the group to support the review of the university’s bereavement and compassionate leave policies and facilitate two university-wide events focusing on death, grief and bereavement. Conclusion: Through the university hospice partnership, awarding of the Charter Mark and the work of the group, Queen Margaret University is developing the conditions for a sustainable, bereavement-friendly organisation. Learnings have also emerged regarding the crucial role of partnership work for building caring capacity within organisations.Item P-226 Adapting higher education to meet the learning needs of the workforce in palliative care: a university hospice partnership approach(British Medical Journal Publishing Group, 2025-11-21) Young, Julie; Gardner, Hilary; Tsiris, Giorgos; Haraldsdottir, Erna; Cruickshank, Fiona; Williams, ElvinBackground In Scotland, people are living longer, the prevalence of chronic conditions is rising, and the need for palliative care is projected to increase significantly (Finucane, Bone, Etkind, et al. BMJOpen. 2021;11:e041317). Specifically, there is a need for increased capacity in specialist and generalist palliative care skills (Scottish Government. Palliative and end-of-life care strategy aims principles and priorities. Scottish Government; 2023). The changing landscape is compounded by Scotland’s healthcare staffing crisis (Royal College of Nursing. The nursing workforce in Scotland 2024 report. Royal College of Nursing, Scotland; 2024). The workforce faces evolving needs, not least the need for healthcare professionals to hold sufficient knowledge to support the delivery of palliative care (Hospice UK. The future of hospice care in Scotland. Hospice UK; 2021). In line with strategy (The Scottish Government. Palliative care strategy: Palliative Care Matters for All. Scottish Government; 2024), a key component of the partnership between St Columba’s Hospice Care and Queen Margaret University is the education of healthcare professionals working with people with palliative care needs. The university hospice partnership supports the provision of two higher education programmes and contributes to the palliative care curriculum across the university. Aim: To outline how the university hospice partnership has helped to widen accessibility and increase the flexibility of palliative care higher education for health professionals. Method: The following changes have been introduced to the programmes since 2022: a move to online delivery, introducing asynchronous learning opportunities, increasing module choice, opening to applicants globally, and advertising the option to access our modules as stand-alone or electively from other programmes. Results: Our responsive approach increased accessibility and engagement, to include students from a wider range of disciplines and geographical locations. There has been a consistent number of students accessing our programmes. Increasingly, however, potential applicants face barriers to accessing funding and support from their employers. Conclusion: Our responsive and ongoing adaptive approach has widened the student demographic. Increasingly, healthcare professionals face significant challenges in accessing the support necessary to engage with higher education. The university partnership recognises that to meet the ongoing educational needs of the workforce, it is crucial to continue with our responsive, flexible and adaptable approach.Item Person-centred approach for people with learning disabilities in palliative care: the challenges(Queen Margaret University, Edinburgh, 2025-11-30) Wilson, Ashleigh; Young, Julie; Haraldsdottir, ErnaBackground People with a learning disability (PWLD) are living longer with a greater need for palliative care. Research has identified that people with a learning disability experience challenges when accessing palliative care with concerns that person-centred care is not being achieved. Aim The overall aim of this study is to present a meta-synthesis of qualitative studies. Focusing on the challenges of achieving person-centred care for PWLD and palliative care needs, to gain a deeper understanding of the challenges they experience. Method A qualitative meta-synthesis literature review using a seven-phased model by Noblit and Hare was undertaken. An online literature search was conducted between 8 July 2024 and 31 July 2024 across four databases: SAGE publications, PubMed, Wiley Online Library and CINAHL. Results 10 studies were reviewed with 226 participants ranging from PWLD, support workers, health professionals and family members. Main themes identified were: a deficiency of knowledge, the importance of the environment, challenges in achieving effective communication and advance care planning to achieve better outcomes. Conclusion This qualitative meta-synthesis identifies the challenges of achieving person-centred care for PWLD and palliative care needs. It draws attention to person-centred theory and how this supports good person-centred care for PWLD. This paper went further to identify how person-centred theory links with the wider context of healthcare practice while exploring recommendations to improve practice and gaps in research.Item Perspective Chapter: Rekindling the Vision for Palliative and End-of-Life Care for Future Practices(IntechOpen, 2025-02-05) Haraldsdottir, Erna; Bullock, KarenThis chapter will focus on the original philosophy of palliative care as developed by Dame Cicely Saunders. Attention will be paid to the development of palliative care and the challenges to remain close to the original vision as practice develops further within a traditional medical environment. The overall purpose and focus of the chapter are for the reader to engage with the inherent holistic and person-centered approach of palliative and end-of-life care as developed by Cicely Saunders and to gain an understanding and insight into how to maintain her vision as an essential element of care within modern palliative and end-of-life care.Item Developing person-centred care in hospices through the voice and leadership of nursing: lessons from the United Kingdom(Frontiers Media, 2025-10-15) Haraldsdottir, Erna; Cooper, Marie; Richardson, HeatherIntroduction: Nursing leadership and the voice of nurses are crucial for developing person-centred care in hospices. Concerns have been raised that, as palliative care has evolved from its original vision and become more integrated into the mainstream healthcare system, it has increasingly become medicalised. This paper presents an emancipatory practice development programme aimed at enhancing the visibility and voice of nursing and nurse leadership to improve person-centred care in hospices across the United Kingdom. Methods: The project was a 10-month collaborative education programme for nursing practice leaders in hospices throughout the United Kingdom, running from September 2023 to July 2024. A total of 24 clinical and practice development leaders from eight different hospices participated. The Kirkpatrick model for evaluating learning programmes was adapted to create a framework for assessing the programme's outcomes and impact. The evaluation process utilised Collaborative Critical Creative Inquiry. Results: The key findings from the evaluation indicate that the programme created conditions for the participants to gain transformative insights and understanding that positively impacted their practice through emancipatory practice development. Discussion: The programme enabled leaders of person-centred care in hospices to rekindle their vision for palliative care practice. The participants became more aware of how care was constructed within their organisations and recognised the assumptions that were often taken for granted—assumptions that influenced daily care practices that sometimes leaned towards a traditional medical model. They acquired new skills and knowledge that empowered them to engage more intentionally in making changes to enhance person-centred care. Conclusion and implications for practice: Humanising healthcare is a global agenda, and within hospice care, nurses are at the heart of transforming care to be more person-centred. They are well-positioned to reclaim the core principles of palliative care, as developed by Cicely Saunders, and push back against the medical model that has overshadowed the development and integration of palliative care into current healthcare systems. Nurses are expert practitioners and leaders who hold positions of authority within their organisations. Yet, for many, their change-making potential is not realised. Innovative learning and development programmes are an essential part of humanising healthcare, and emancipatory practice development programmes can unlock nurses' potential to lead this transformation.Item Transition to end-of-life care in patients with neurological diseases in an acute hospital ward(BioMed Central, 2024-07-22) Jonsdottir, Gudrun; Haraldsdottir, Erna; Vilhjalmsson, Runar; Sigurdardottir, Valgerdur; Hjaltason, Haukur; Klinke, Marianne Elisabeth; Tryggvadottir, Gudny Bergthora; Jonsdottir, HelgaBackground: Transitioning to end-of-life care and thereby changing the focus of treatment directives from life-sustaining treatment to comfort care is important for neurological patients in advanced stages. Late transition to end-of-life care for neurological patients has been described previously. Objective: To investigate whether previous treatment directives, primary medical diagnoses, and demographic factors predict the transition to end-of-life care and time to eventual death in patients with neurological diseases in an acute hospital setting. Method: All consecutive health records of patients diagnosed with stroke, amyotrophic lateral sclerosis (ALS), and Parkinson’s disease or other extrapyramidal diseases (PDoed), who died in an acute neurological ward between January 2011 and August 2020 were retrieved retrospectively. Descriptive statistics and multivariate Cox regression were used to examine the timing of treatment directives and death in relation to medical diagnosis, age, gender, and marital status. Results: A total of 271 records were involved in the analysis. Patients in all diagnostic categories had a treatment directive for end-of-life care, with patients with haemorrhagic stroke having the highest (92%) and patients with PDoed the lowest (73%) proportion. Cox regression identified that the likelihood of end-of-life care decision-making was related to advancing age (HR = 1.02, 95% CI: 1.007–1.039, P = 0.005), ischaemic stroke (HR = 1.64, 95% CI: 1.034–2.618, P = 0.036) and haemorrhagic stroke (HR = 2.04, 95% CI: 1.219–3.423, P = 0.007) diagnoses. End-of-life care decision occurred from four to twenty-two days after hospital admission. The time from end-of-life care decision to death was a median of two days. Treatment directives, demographic factors, and diagnostic categories did not increase the likelihood of death following an end-of-life care decision. Conclusions: Results show not only that neurological patients transit late to end-of-life care but that the timeframe of the decision differs between patients with acute neurological diseases and those with progressive neurological diseases, highlighting the particular significance of the short timeframe of patients with the progressive neurological diseases ALS and PDoed. Different trajectories of patients with neurological diseases at end-of-life should be further explored and clinical guidelines expanded to embrace the high diversity in neurological patients.Item A qualitative meta-synthesis of studies of patients' experience of exercise interventions in advanced cancer(Frontiers Media S.A., 2024-01-04) Young, Julie; Lloyd, Anna; Haraldsdottir, ErnaBackground: People with advanced cancer often experience reduced functional capacity and quality of life. Research evaluating the potential benefit of exercise programmes for limiting such decline is accumulating. However, an appraisal of the evidence that considers the patient experience of exercise programmes, what mattered to them and what motivated and encouraged them to engage in exercise, has not been published. The aim of this meta-synthesis was to identify, appraise and bring together evidence from qualitative research in this area. Methods: Four databases were searched from 2nd January to 8th January 2023 for relevant studies. Qualitative studies investigating the experience of exercise as an intervention for adults with advanced cancer were included. Major findings and study characteristics were extracted. Findings were summarised, compared, and synthesised using meta-synthesis. Results: Eight studies were eligible and generated seven sub themes which informed the construction of three key themes: (1) Impact of Delivery Method; (2) Emerging Motivation; and (3) Physical Impact. Conclusion: The analysis revealed that exercise has the potential to positively influence all four dimensions of well-being: physical, psychological, social, and spiritual, for people with advanced cancer. Future research is required to consider the differential impact that the type, volume, and duration of exercise may have on the exercise experience for this patient group.Item Inpatient hospice admissions. Who is admitted and why: a mixed-method prospective study(SAGE Publications, 2023-07-10) Haraldsdottir, Erna; Lloyd, Anna; Bijak, Martyn; Milton, Libby; Finucane, Anne M.Background:: Over the next two decades, the numbers of people who will need palliative care in the United Kingdom and Ireland is projected to increase. Hospices play a vital role supporting people who require specialist palliative care input through community-based and inpatient palliative care services. Evidence is needed to understand the role of these different services to inform future service development. Objectives:: To describe the reasons for admission, and outcomes at the end of the stay, for patients admitted to two hospice inpatient units (IPUs). Design:: This was a mixed-methods study using a convergent, parallel mixed-methods design. Methods:: We reviewed the case notes of all patients admitted to two hospice inpatient units from July to November 2019; conducted semi-structured interviews with patients and families; as well as brief structured interviews with inpatient unit staff. Results:: Two hundred fifty-nine patients were admitted to a hospice IPU, accounting for 276 admissions in total. Overall, 53% were female; median age was 71 years (range: 26–95 years). Most patients (95%) were White British or Scottish, and 95% had a cancer diagnosis. Most patients were admitted from the community, under one-third were admitted from hospital. Most (85%) had previous palliative care involvement. Nearly, half had district nurse support (48%). Worry and anxiety was frequently reported as a reason for admission, alongside physical concerns. Median length of stay was 12 days, and 68% died during their stay. Hospice was recorded as the preferred place of care for 56% of those who died there. Conclusions:: Sustained efforts to promote the hospice as place of care for people with conditions other than cancer are needed alongside greater clarity regarding of the role of the hospice IPU, and who would benefit most from IPU support.Item Developing and testing inter‐rater reliability of a data collection tool for patient health records on end‐of‐life care of neurological patients in an acute hospital ward(2023-05-04) Jonsdottir, Gudrun; Haraldsdottir, Erna; Sigurdardottir, Valgerdur; Thoroddsen, Asta; Vilhjalmsson, Runar; Tryggvadottir, Gudny Bergthora; Jonsdottir, HelgaAim: Develop and test a data collection tool—Neurological End‐Of‐Life Care Assessment Tool (NEOLCAT)—for extracting data from patient health records (PHRs) on end‐of‐life care of neurological patients in an acute hospital ward. Design: Instrument development and inter‐rater reliability (IRR) assessment. Method: NEOLCAT was constructed from patient care items obtained from clinical guidelines and literature on end‐of‐life care. Expert clinicians reviewed the items. Using percentage agreement and Fleiss' kappa we calculated IRR on 32 nominal items, out of 76 items. Results: IRR of NEOLCAT showed 89% (range 83%–95%) overall categorical percentage agreement. The Fleiss' kappa categorical coefficient was 0.84 (range 0.71–0.91). There was fair or moderate agreement on six items, and moderate or almost perfect agreement on 26 items. Conclusion: The NEOLCAT shows promising psychometric properties for studying clinical components of care of neurological patients at the end‐of‐life on an acute hospital ward but could be further developed in future studies.Item Integrating lived experiences of out-of-hours health services for people with palliative and end-of-life care needs with national datasets for people dying in Scotland in 2016: A mixed methods, multi-stage design(SAGE, 2022-03-30) Mason, Bruce; Carduff, Emma; Laidlaw, Sheonad; Kendall, Marilyn; Murray, Scott A.; Finucane, Anne; Moine, Sebastien; Kerssens, Joannes; Stoddart, Andrew; Tucker, Sian; Haraldsdottir, Erna; Ritchie, Sir Lewis; Fallon, Marie; Keen, Jeremy; Macpherson, Stella; Moussa, Lorna; Boyd, KirstyBackground:: Unscheduled care is used increasingly during the last year of life by people known to have significant palliative care needs. Aim:: To document the frequency and patterns of use of unscheduled healthcare by people in their last year of life and understand the experiences and perspectives of patients, families and professionals about accessing unscheduled care out-of-hours. Design:: A mixed methods, multi-stage study integrating a retrospective cohort analysis of unscheduled healthcare service use in the last year of life for all people dying in Scotland in 2016 with qualitative data from three regions involving service users, bereaved carers and general practitioners. Setting:: Three contrasting Scottish Health Board regions and national datasets for the whole of Scotland. Results:: People who died in Scotland in 2016 (n = 56,407) had 472,360 unscheduled contacts with one of five services: telephone advice, primary care, ambulance service, emergency department and emergency hospital admission. These formed 206,841 individual continuous unscheduled care pathways: 65% starting out-of-hours. When accessing healthcare out-of-hours, patients and carers prioritised safety and a timely response. Their choice of which service to contact was informed by perceptions and previous experiences of potential delays and whether the outcome might be hospital admission. Professionals found it difficult to practice palliative care in a crisis unless the patient had previously been identified. Conclusion:: Strengthening unscheduled care in the community, together with patient and public information about how to access these services could prevent hospital admissions of low benefit and enhance community support for people living with advanced illness.