Nursing
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Item Using Palliative Care Needs Rounds in the UK for care home staff and residents: an implementation science study(NIHR Journals Library, 2024-07) Forbat, Liz; Macgregor, Aisha; Spilsbury, Karen; McCormack, Brendan; Rutherford, Alasdair; Hanratty, Barbara; Hockley, Jo; Davison, Lisa; Ogden, Margaret; Soulsby, Irene; McKenzie, MaisieBackground Care home residents often lack access to end-of-life care from specialist palliative care providers. Palliative Care Needs Rounds, developed and tested in Australia, is a novel approach to addressing this. Objective To co-design and implement a scalable UK model of Needs Rounds. Design A pragmatic implementation study using the integrated Promoting Action on Research Implementation in Health Services framework. Setting Implementation was conducted in six case study sites (England, n = 4, and Scotland, n = 2) encompassing specialist palliative care service working with three to six care homes each. Participants Phase 1: interviews (n = 28 care home staff, specialist palliative care staff, relatives, primary care, acute care and allied health practitioners) and four workshops (n = 43 care home staff, clinicians and managers from specialist palliative care teams and patient and public involvement and engagement representatives). Phase 2: interviews (n = 58 care home and specialist palliative care staff); family questionnaire (n = 13 relatives); staff questionnaire (n = 171 care home staff); quality of death/dying questionnaire (n = 81); patient and public involvement and engagement evaluation interviews (n = 11); fidelity assessment (n = 14 Needs Rounds recordings). Interventions (1) Monthly hour-long discussions of residents’ physical, psychosocial and spiritual needs, alongside case-based learning, (2) clinical work and (3) relative/multidisciplinary team meetings. Main outcome measures A programme theory describing what works for whom under what circumstances with UK Needs Rounds. Secondary outcomes focus on health service use and cost effectiveness, quality of death and dying, care home staff confidence and capability, and the use of patient and public involvement and engagement. Data sources Semistructured interviews and workshops with key stakeholders from the six sites; capability of adopting a palliative approach, quality of death and dying index, and Canadian Health Care Evaluation Project Lite questionnaires; recordings of Needs Rounds; care home data on resident demographics/health service use; assessments and interventions triggered by Needs Rounds; semistructured interviews with academic and patient and public involvement and engagement members. Results The programme theory: while care home staff experience workforce challenges such as high turnover, variable skills and confidence, Needs Rounds can provide care home and specialist palliative care staff the opportunity to collaborate during a protected time, to plan for residents’ last months of life. Needs Rounds build care home staff confidence and can strengthen relationships and trust, while harnessing services’ complementary expertise. Needs Rounds strengthen understandings of dying, symptom management, advance/anticipatory care planning and communication. This can improve resident care, enabling residents to be cared for and die in their preferred place, and may benefit relatives by increasing their confidence in care quality. Limitations COVID-19 restricted intervention and data collection. Due to an insufficient sample size, it was not possible to conduct a cost–benefit analysis of Needs Rounds or calculate the treatment effect or family perceptions of care. Conclusions Our work suggests that Needs Rounds can improve the quality of life and death for care home residents, by enhancing staff skills and confidence, including symptom management, communications with general practitioners and relatives, and strengthen relationships between care home and specialist palliative care staff.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 Distance education methods are useful for delivering education to palliative caregivers: A single-arm trial of an education package (PalliativE Caregivers Education Package)(Sage, 2017-06-12) Forbat, Liz; Robinson, Rowena; Bilton-Simek, Rachel; Francois, Karemah; Lewis, Marsha; Haraldsdottir, ErnaBackground: Face-to-face/group education for palliative caregivers is successful, but relies on caregivers travelling, being absent from the patient, and rigid timings. This presents inequities for those in rural locations. Aim: To design and test an innovative distance-learning educational package (PrECEPt: PalliativE Caregivers Education Package). Design: Single-arm mixed-method feasibility proof-of-concept trial (ACTRN12616000601437). The primary outcome was carer self-efficacy, with secondary outcomes focused on caregiver preparedness and carer tasks/needs. Analysis focused on three outcome measures (taken at baseline and 6 weeks) and feasibility/acceptability qualitative data. Setting and participants: A single specialist palliative care service. Eligible informal caregivers were those of patients registered with the outpatient or community service, where the patient had a prognosis of ⩾12 weeks, supporting someone with nutrition/ hydration and/or pain management needs, proficient in English and no major mental health diagnosis. Results: Two modules were developed and tested (nutrition/hydration and pain management) with 18 caregivers. The materials did not have a statistically significant impact on carer self-efficacy. However, statistically significant improvements were observed on the two subsidiary measures of (1) caregiving tasks, consequences and needs (p = 0.03, confidence interval: 0.72, 9.4) and (2) caregiver preparedness (p = 0.001, confidence interval: −1.22, −0.46). The study determined that distance learning is acceptable and feasible for both caregivers and healthcare professionals. Conclusion: Distance education improves caregiver preparedness and is a feasible and acceptable approach. A two-arm trial would determine whether the materials benefitted caregivers and patients compared to a control group not receiving the materials. Additional modules could be fruitfully developed and offeredItem Clinical Implications for Supporting Caregivers at the End-of-Life: Findings and from a Qualitative Study(2012) Forbat, Liz; McManus, Elaine; Haraldsdottir, ErnaDespite families providing considerable care at end of life, there are substantial gaps in the provision of supportive care. A qualitative interview study was conducted with 17 caregivers of people supported by an adult hospice to explore the support needs of families. Family members readily identified the ways in which the diagnosis of a life limiting illness impacted on them and the family as a whole, not just the patient. Implications for practice demonstrate the need to intervene at a family and relational level prior to bereavement, in order to mitigate complicated grief for the surviving family members. Such an approach offers a fruitful prospective alternative to supporting caregivers post bereavement.Item Supporting the provision of palliative care in the home environment: a proof-of-concept single-arm trial of a PalliativE Carers Education Package (PrECEPt)(BMJ, 2016-10-01) Forbat, Liz; Haraldsdottir, Erna; Lewis, Marsha; Hepburn, KenIntroduction Practical educational interventions for palliative carers are needed. Current supports frequently rely on carers travelling to a central venue to receive education. A substantial gap therefore exists around determining how high-quality relevant information can be delivered nationally, with limited cost implications, using educational methods that are acceptable to carers in palliative care. This study seeks to design and assess feasibility and acceptability of a distance-learning approach to educating carers. Methods This is an embedded mixed-method feasibility and acceptability study. It embeds an unblinded 1-arm pilot test, with subsequent qualitative interviews which will be used to inform the assessment of the intervention's acceptability and feasibility. The theoretical framework is self-efficacy theory, whereby we seek to impact carers' beliefs in their ability to carry out and succeed in caring tasks and situations. The educational materials focused on pain and nutrition/hydration will be developed in phase 1 with former carers (n=8) providing input into the content and style of materials. The educational package privileges adult-learning styles, recognising and responding to the learner's context including their learning needs, prior knowledge and motivations for engaging in education. The materials will be tested with up to 24 current carers. Analysis Analysis will focus on determining recruitment processes for a full-scale study, data collection procedures/completion rates, queries directed to the hospice from carers involved in the feasibility work, mode of delivery and content of the materials. The primary outcome measure is self-efficacy, with other measures focused on caregiver preparedness and caregiving tasks, consequences and needs questionnaire. Adherence to educational components will also be collected and reported. Ethics and dissemination Ethical approval has been provided by the participating site, Calvary Healthcare, Canberra, reference 02-2016, and the Australian Catholic University. Results will be published in peer-reviewed journals, presented at conferences and a lay summary sent to participants. Trial registration number ACTRN12616000601437; Pre-results.