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 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.Item A randomized, feasibility trial of an exercise and nutrition‐based rehabilitation programme (ENeRgy) in people with cancer(Wiley, 2021-10-05) Hall, Charlie C.; Skipworth, Richard J.E.; Blackwood, Honor; Brown, Duncan; Cook, Jane; Diernberger, Katharina; Dixon, Elizabeth; Gibson, Valerie; Graham, Catriona; Hall, Peter; Haraldsdottir, Erna; Hopkinson, Jane; Lloyd, Anna; Maddocks, Matthew; Norris, Lucy; Tuck, Sharon; Fallon, Marie T.; Laird, Barry J.A.Background: Despite rehabilitation being increasingly advocated for people living with incurable cancer, there is limited evidence supporting efficacy or component parts. The progressive decline in function and nutritional in this population would support an approach that targets these factors. This trial aimed to assess the feasibility of an exercise and nutrition based rehabilitation programme in people with incurable cancer. Methods: We randomized community dwelling adults with incurable cancer to either a personalized exercise and nutrition based programme (experimental arm) or standard care (control arm) for 8 weeks. Endpoints included feasibility, quality of life, physical activity (step count), and body weight. Qualitative and health economic analyses were also included. Results: Forty‐five patients were recruited (23 experimental arm, 22 control arm). There were 26 men (58%), and the median age was 78 years (IQR 69–84). At baseline, the median BMI was 26 kg/m2 (IQR: 22–29), and median weight loss in the previous 6 months was 5% (IQR: −12% to 0%). Adherence to the experimental arm was >80% in 16/21 (76%) patients. There was no statistically significant difference in the following between trial arms: step count − median % change from baseline to endpoint, per trial arm (experimental −18.5% [IQR: −61 to 65], control 5% [IQR: −32 to 50], P = 0.548); weight − median % change from baseline to endpoint, per trial arm (experimental 1%[IQR: −3 to 3], control −0.5% [IQR: −3 to 1], P = 0.184); overall quality of life − median % change from baseline to endpoint, per trial arm (experimental 0% [IQR: −20 to 19], control 0% [IQR: −23 to 33], P = 0.846). Qualitative findings observed themes of capability, opportunity, and motivation amongst patients in the experimental arm. The mean incremental cost of the experimental arm versus control was £‐319.51 [CI −7593.53 to 6581.91], suggesting the experimental arm was less costly. Conclusions: An exercise and nutritional rehabilitation intervention is feasible and has potential benefits for people with incurable cancer. A larger trial is now warranted to test the efficacy of this approach.Item Virtual reality in hospice: Improved patient well-being(BMJ, 2021-07-02) Lloyd, Anna; Haraldsdottir, ErnaVirtual reality (VR) technology as a therapeutic intervention has been gaining attention in healthcare settings in recent years. Studies suggest that using the technology can help alleviate symptoms such as pain and anxiety and induce positive emotions for people in hospital. Managing symptoms and promoting emotional and psychological well-being are core palliative care goals of relieving suffering of people with life-limiting illness. Accordingly, VR may be highly beneficial for use in hospice care yet remains underdeveloped in such settings. This qualitative study aimed to trial the technology and consider what benefits may emerge for hospice in patients. A one-off VR session was offered to patients at a hospice in Scotland. Sessions were observed by a researcher and followed by qualitative semi-structured interviews to discuss the experience with those who took part. Interviews were audio recorded, transcribed and thematically analysed. Nineteen hospice patients successfully tried an immersive VR experience. VR sessions were acceptable for people within the hospice environment. The majority of participants enjoyed the experience. Many expressed joy and delight at the process. VR holds possibilities for relieving symptoms such as pain and anxiety frequently experienced by people in hospices. Furthermore, the technology offers the capacity to reconnect with a previous sense of self and to allow respite through the capacity to transcend current reality and connect with another meaningful reality. This exploratory study offers a starting point for larger studies to investigate the utility of VR for hospice patients.Item Pain assessment and management in care homes: Understanding the context through a scoping review(BMC, 2021-07-18) Pringle, Jan; Mellado, Ana Sofia Alvarado Vázquez; Haraldsdottir, Erna; Kelly, Fiona; Hockley, JoBackground: Internationally, 2–5% of people live in residential or nursing homes, many with multi-morbidities, including severe cognitive impairment. Pain is frequently considered an expected part of old age and morbidity, and may often be either under-reported by care home residents, or go unrecognized by care staff. We conducted a systematic scoping review to explore the complexity of pain recognition, assessment and treatment for residents living in care homes, and to understand the contexts that might influence its management. Methods: Scoping review using the methodological framework of Levac and colleagues. Articles were included if they examined pain assessment and/or management, for care or nursing home residents. We searched Medline, CINAHL, ASSIA, PsycINFO, EMBASE, Cochrane Library, and Google Scholar; reference lists were also screened, and website searches carried out of key organisations. Conversations with 16 local care home managers were included to gain an understanding of their perspective. Results: Inclusion criteria were met by 109 studies. Three overarching themes were identified: Staff factors and beliefs - in relation to pain assessment and management (e.g. experience, qualifications) and beliefs and perceptions relating to pain. Pain assessment – including use of pain assessment tools and assessment/management for residents with cognitive impairment. Interventions - including efficacy/effects (pharmaceutical/non pharmaceutical), and pain training interventions and their outcomes. Overall findings from the review indicated a lack of training and staff confidence in relation to pain assessment and management. This was particularly the case for residents with dementia. Conclusions: Further training and detailed guidelines for the appropriate assessment and treatment of pain are required by care home staff. Professionals external to the care home environment need to be aware of the issues facing care homes staff and residents in order to target their input in the most appropriate way.Item Exploring the costs, consequences and efficiency of three types of palliative care day services in the UK: A pragmatic before-and-after descriptive cohort study(BMC, 2020-08-07) Mitchell, Paul Mark; Coast, Joanna; Myring, Gareth; Ricciardi, Federico; Vickerstaff, Victoria; Jones, Louise; Zafar, Shazia; Cudmore, Sarah; Jordan, Joanne; McKibben, Laurie; Graham-Wisener, Lisa; Finucane, Anne; Hewison, Alistair; Haraldsdottir, Erna; Brazil, Kevin; Kernohan, W. GeorgeBackground: Palliative Care Day Services (PCDS) offer supportive care to people with advanced, progressive illness who may be approaching the end of life. Despite the growth of PCDS in recent years, evidence of their costs and effects is scarce. It is important to establish the value of such services so that health and care decision-makers can make evidence-based resource allocation decisions. This study examines and estimates the costs and effects of PCDS with different service configurations in three centres across the UK in England, Scotland and Northern Ireland.