Nursing
Permanent URI for this collectionhttps://eresearch.qmu.ac.uk/handle/20.500.12289/24
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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; McCormack, BrendanIntroduction: 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 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 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.Item Components for providing person-centred palliative healthcare: An umbrella review(Elsevier, 2021-10-17) Kmetec, Sergej; Fekonja, Zvonka; Kolarič, Jožica Černe; Reljić, Nataša Mlinar; McCormack, Brendan; Sigurðardóttir, Árún Kristín; Lorber, MatejaPerson-centred palliative healthcare is an important approach to maintaining and improving patients' quality of life living with a chronic non-communicable disease and their partners. Such an approach can reduce unnecessary hospitalisation, holistically address the patient and their partners' needs, and help develop an advance care plan. Assess, analyse, and synthesise the currently existing international guidelines for providing person-centred palliative care and identify the key components for providing a high-quality approach. An umbrella review methodology of systematic reviews with the method of examination, analysis and synthesis of literature and the compilation method. Relevant systematic reviews of guidelines for providing person-centred palliative care in English, German and/or Slovenian language in PubMed, CINAHL, Web of Science and Cochrane Library databases, until November 2020. Out of 3,910 records, we included seven reviews for thematic synthesis. We identified four key elements of flourishing in person-centred palliative healthcare: (i) Healthcare staff prerequisites and traits; (ii) Palliative healthcare environment; (iii) Palliative healthcare processes; and (iv) Palliative healthcare outcomes. We concluded that person-centred palliative healthcare plays an important role in the comprehensive treatment of patients living with a non-communicable disease accompanied by disturbing symptoms. Therefore, it is necessary to raise awareness amongst healthcare professionals and especially general practitioners about the possibilities of including patients with a non-communicable disease in early person-centred palliative healthcare. Tweetable Abstract #UmbrellaReview of components for providing #personcentredpalliative #healthcare. Components provide healthcare professionals and interdisciplinary #palliative teams with the steps on how to give #personcentredpalliative #healthcare to #patient and #support to #carepartners.Item Palliative and end-of-life care in care homes: Protocol for codesigning and implementing an appropriate scalable model of Needs Rounds in the UK(BMJ, 2021-02-22) Macgregor, Aisha; Rutherford, Alasdair; McCormack, Brendan; Hockley, Jo; Ogden, Margaret; Soulsby, Irene; McKenzie, Maisie; Spilsbury, Karen; Hanratty, Barbara; Forbat, LizPalliative and end-of-life care in care homes is often inadequate, despite high morbidity and mortality. Residents can experience uncontrolled symptoms, poor quality deaths and avoidable hospitalisations. Care home staff can feel unsupported to look after residents at the end of life. Approaches for improving end-of-life care are often education-focused, do not triage residents and rarely integrate clinical care. This study will adapt an evidence-based approach from Australia for the UK context called 'Palliative Care Needs Rounds' (Needs Rounds). Needs Rounds combine triaging, anticipatory person-centred planning, case-based education and case-conferencing; the Australian studies found that Needs Rounds reduce length of stay in hospital, and improve dying in preferred place of care, and symptoms at the end of life. This implementation science study will codesign and implement a scalable UK model of Needs Rounds. The Integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) framework will be used to identify contextual barriers and use facilitation to enable successful implementation. Six palliative care teams, working with 4-6 care homes each, will engage in two phases. In phase 1 (February 2021), stakeholder interviews (n=40) will be used to develop a programme theory to meet the primary outcome of identifying what works, for whom in what circumstances for UK Needs Rounds. Subsequently a workshop to codesign UK Needs Rounds will be run. Phase 2 (July 2021) will implement the UK model for a year. Prospective data collection will focus on secondary outcomes regarding hospitalisations, residents' quality of death and care home staff capability of adopting a palliative approach. Frenchay Research Ethics Committee (287447) approved the study. Findings will be disseminated to policy-makers, care home/palliative care practitioners, residents/relatives and academic audiences. An implementation package will be developed for practitioners to provide the tools and resources required to adopt UK Needs Rounds. Registration details: ISRCTN15863801.Item Reaching for the rainbow: Person-centred practice in palliative care(Foundation of Nursing Studies, 2020-05-13) Haraldsdottir, Erna; Donaldson, Kim; Lloyd, Anna; Barclay, Irene; McCormack, BrendanBackground: Person-centred practice is inherently integrated in palliative care. However, it cannot be assumed that its underpinning values are lived out in day-to-day practice in a hospice. At St Columba’s Hospice, Edinburgh, the five-year strategy demonstrated commitment to person-centredness and this prompted an 18-month project focusing on the evaluation and development of a person-centred culture, taking a practice development approach.Item The value of poetry therapy for people in palliative and end of life care(Taylor & Francis, 2019-11-08) Gilmour, Fiona; Riccobono, Rossella; Haraldsdottir, ErnaBackground: People in palliative and end of life care often experience issues relating to feelings of loneliness and feeling unable to connect with and express their emptions. This can lead to poorer outcomes for people, and inhibits person-centred experiences.Item Mind the gap: Patients’ experiences and perceptions of goal setting in palliative care(Taylor & Francis, 2019-10-13) Boa, Sally; Duncan, Edward; Haraldsdottir, Erna; Wyke, SallyBackground: Palliative care aims to support people to live as actively as possible until death. A rehabilitative approach which includes goal setting could be an important way of achieving this. Goal setting is well established in best practice guidelines for palliative care. However little is known about how the process of goal setting actually happens in practice, especially from patients’ points of view. We aimed to investigate patients’ expectations, experience and perceptions of goal setting in one hospice.Item Nurses' perceptions of early person-centred palliative care: A cross-sectional descriptive study(Wiley, 2019-05-20) Kmetec, Sergej; Štiglic, Gregor; Lorber, Mateja; Mikkonen, Irma; McCormack, Brendan; Pajnkihar, Majda; Fekonja, ZvonkaPalliative care is aimed at improving the quality of life of an individual with chronic noncommunicable disease and their care partners. Limitations in the provision of palliative care are mainly lack of knowledge and experience by nurses, fear of treating palliative persons, loss of control over treatment and fear of providing poor-quality palliative care to persons and care partners. The aim of this study was to investigate the perception, knowledge and attitudes of palliative care by nurses who use palliative care approaches in practice, as well as the difference in perception, knowledge and attitudes of palliative care between nurses in Slovenia and Finland. We conducted a cross-sectional descriptive study. The survey included 440 nurses in clinical environments in Slovenia and Finland with a completed bachelor, master or doctoral level of education. We found statistically significant differences between both countries in the perception of palliative care. Differences between the two countries in the knowledge of palliative care were not confirmed. We confirmed statistically significant differences between both countries in the attitudes of palliative nursing care. Early person-centred palliative care is an important part of the holistic and integrative treatment of a person who has a disease with disturbing symptoms. For such an approach, it is important to educate nurses about knowledge, expectations, values and beliefs in developing a concept of person-centred palliative care to improve quality of life. The better perception, knowledge and attitudes of palliative care by nurses may help persons to improve and raise their quality of life, as well as diminish stress in their care partners and improve quality of life.