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1.
Health Technol Assess ; 24(25): 1-150, 2020 05.
Article in English | MEDLINE | ID: mdl-32484432

ABSTRACT

BACKGROUND: Most people who are dying want to be cared for at home, but only half of them achieve this. The likelihood of a home death often depends on the availability of able and willing lay carers. When people who are dying are unable to take oral medication, injectable medication is used. When top-up medication is required, a health-care professional travels to the dying person's home, which may delay symptom relief. The administration of subcutaneous medication by lay carers, although not widespread UK practice, has proven to be key in achieving better symptom control for those dying at home in other countries. OBJECTIVES: To determine if carer administration of as-needed subcutaneous medication for common breakthrough symptoms in people dying at home is feasible and acceptable in the UK, and if it would be feasible to test this intervention in a future definitive randomised controlled trial. DESIGN: We conducted a two-arm, parallel-group, individually randomised, open pilot trial of the intervention versus usual care, with a 1 : 1 allocation ratio, using convergent mixed methods. SETTING: Home-based care without 24/7 paid care provision, in three UK sites. PARTICIPANTS: Participants were dyads of adult patients and carers: patients in the last weeks of their life who wished to die at home and lay carers who were willing to be trained to give subcutaneous medication. Strict risk assessment criteria needed to be met before approach, including known history of substance abuse or carer ability to be trained to competency. INTERVENTION: Intervention-group carers received training by local nurses using a manualised training package. MAIN OUTCOME MEASURES: Quantitative data were collected at baseline and 6-8 weeks post bereavement and via carer diaries. Interviews with carers and health-care professionals explored attitudes to, experiences of and preferences for giving subcutaneous medication and experience of trial processes. The main outcomes of interest were feasibility, acceptability, recruitment rates, attrition and selection of the most appropriate outcome measures. RESULTS: In total, 40 out of 101 eligible dyads were recruited (39.6%), which met the feasibility criterion of recruiting > 30% of eligible dyads. The expected recruitment target (≈50 dyads) was not reached, as fewer than expected participants were identified. Although the overall retention rate was 55% (22/40), this was substantially unbalanced [30% (6/20) usual care and 80% (16/20) intervention]. The feasibility criterion of > 40% retention was, therefore, considered not met. A total of 12 carers (intervention, n = 10; usual care, n = 2) and 20 health-care professionals were interviewed. The intervention was considered acceptable, feasible and safe in the small study population. The context of the feasibility study was not ideal, as district nurses were seriously overstretched and unfamiliar with research methods. A disparity in readiness to consider the intervention was demonstrated between carers and health-care professionals. Findings showed that there were methodological and ethics issues pertaining to researching last days of life care. CONCLUSION: The success of a future definitive trial is uncertain because of equivocal results in the progression criteria, particularly poor recruitment overall and a low retention rate in the usual-care group. Future work regarding the intervention should include understanding the context of UK areas where this has been adopted, ascertaining wider public views and exploring health-care professional views on burden and risk in the NHS context. There should be consideration of the need for national policy and of the most appropriate quantitative outcome measures to use. This will help to ascertain if there are unanswered questions to be studied in a trial. TRIAL REGISTRATION: Current Controlled Trials ISRCTN11211024. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 24, No. 25. See the NIHR Journals Library website for further project information.


Most people in the UK would prefer to die at home, but only half of them achieve this. This usually depends on having able and willing lay carers (family or friends) to help look after them. Once swallowing is not possible, medicine is given continually under the skin (syringe driver). If common problems such as pain, vomiting or agitation break through, health-care professionals attend to give extra doses. The wait for a health-care professional to arrive can be distressing. In the UK, it is legal (but not routine) for lay carers to give needle-free subcutaneous injections themselves. We reworked an Australian carer education package for UK use. The best way to find out if this would work well is to do a randomised controlled trial. This is a test in which, at random, half of the people taking part receive 'usual care' and the other half receive the 'new care' or intervention. A pilot randomised controlled trial (a 'test' trial to see if a larger one is worth doing) was carried out to determine if lay carer injections were possible in the UK. We approached 90 dyads (a dying person and a key carer) and, of these, 40 were willing to take part and 22 completed the follow-up visit, so we could analyse their data. Of these 22 dyads, 16 were in the intervention group (lay carer injects) and six were in the control group (usual care). All carers were asked to keep a diary. Carers and health-care professionals were interviewed (qualitative study) and carer preferences were assessed. This new practice was safe, acceptable and welcomed. Carer confidence increased rapidly, symptom control was quicker and the interviews backed up these findings. Recruitment was low owing to overstretched health-care professionals. Only certain families were picked. Dyads in the usual-care group often wished they were in the intervention group. Carers found it difficult to complete some of the questionnaires that were used to measure the effect of the intervention. Therefore, uncertainty remains as to whether or not a full trial should proceed. Because the practice is already legal, some areas in the UK are already undertaking it. We plan to study what makes this practice possible or less possible to achieve.


Subject(s)
Caregivers , Home Care Services , Injections, Subcutaneous/nursing , Medication Adherence , Terminally Ill , Adult , Caregivers/education , Caregivers/psychology , Feasibility Studies , Female , Humans , Male , Middle Aged , Outcome Assessment, Health Care , Surveys and Questionnaires , Terminal Care , United Kingdom
2.
Trials ; 20(1): 105, 2019 Feb 07.
Article in English | MEDLINE | ID: mdl-30732624

ABSTRACT

BACKGROUND: While the majority of seriously ill people wish to die at home, only half achieve this. The likelihood of someone dying at home often depends on the availability of able and willing lay carers to support them. Dying people are usually unable to take oral medication. When top-up symptom relief medication is required, a clinician travels to the home to administer injectable medication, with attendant delays. The administration of subcutaneous injections by lay carers, though not widespread practice in the UK, has proven key in achieving home deaths in other countries. Our aim is to determine if carer-administration of as-needed subcutaneous medication for four frequent breakthrough symptoms (pain, nausea, restlessness and noisy breathing) in home-based dying patients is feasible and acceptable in the UK. METHODS: This paper describes a randomised pilot trial across three UK sites, with an embedded qualitative study. Dyads of adult patients/carers are eligible, where patients are in the last weeks of life and wish to die at home, and lay carers who are willing to be trained to give subcutaneous medication. Dyads who do not meet strict risk assessment criteria (including known history of substance abuse or carer ability to be trained to competency) will not be approached. Carers in the intervention arm will receive a manualised training package delivered by their local nursing team. Dyads in the control arm will receive usual care. The main outcomes of interest are feasibility, acceptability, recruitment rates, attrition and selection of the most appropriate outcome measures. Interviews with carers and healthcare professionals will explore attitudes to, experiences of and preferences for giving subcutaneous medication and experience of trial processes. The study has obtained full ethical approval. DISCUSSION: This study will rehearse the procedures and logistics which will be undertaken in a future definitive randomised controlled trial and will inform the design of such a study. Findings will illuminate methodological and ethical issues pertaining to researching last days of life care. The study is funded by the National Institute for Health Research (Health Technology Assessment [HTA] project 15/10/37). TRIAL REGISTRATION: ISRCTN, ISRCTN 11211024 . Registered on 27 September 2016.


Subject(s)
Analgesics/administration & dosage , Antiemetics/administration & dosage , Caregivers/education , Delivery of Health Care/methods , Education, Nonprofessional/methods , Home Care Services , Hypnotics and Sedatives/administration & dosage , Palliative Care/methods , Terminal Care/methods , Attitude to Death , Caregivers/psychology , Feasibility Studies , Health Knowledge, Attitudes, Practice , Humans , Injections, Subcutaneous , Multicenter Studies as Topic , Pilot Projects , Randomized Controlled Trials as Topic , Time Factors , Treatment Outcome , United Kingdom
3.
J Clin Nurs ; 23(13-14): 1866-76, 2014 Jul.
Article in English | MEDLINE | ID: mdl-24313355

ABSTRACT

AIMS AND OBJECTIVES: To demonstrate how a national programme aimed to increase the amount of direct time nurses spend with patients', impacts on both staff and patient experience. BACKGROUND: The Productive Ward is an improvement programme developed by the NHS Institute for Innovation and Improvement (2007, http://www.institute.nhs.uk/quality_and_value/productivity_series/productive_ward.html) which aims to enable nurses to work more efficiently by reviewing process and practice, thus releasing more time to spend on direct patient care. However, there is little empirical published research around the programme, particularly concerning impact, sustainability and the patient perspective. DESIGN: This manuscript presents the findings from qualitative interviews involving both staff and patients. METHODS: Semi-structured one-to-one interviews were conducted with patients (n = 8) and staff (n = 5) on five case study wards. Seven focus groups were held according to staff grade (n = 29). RESULTS: Despite initial scepticism, most staff embraced the opportunity and demonstrated genuine enthusiasm and energy for the programme. Patients were generally complimentary about their experience as an inpatient, reporting that staff made them feel safe, comfortable and cared for. CONCLUSION: Findings showed that the aims of the programme were partially met. The implementation of Productive Ward was associated with significant changes to the ward environment and improvements for staff. The programme equipped staff with skills and knowledge which acted as a primer for subsequent interventions. However, there was a lack of evidence to demonstrate that Productive Ward released time for direct patient care in all areas that implemented the programme. RELEVANCE TO CLINICAL PRACTICE: Developing robust performance indicators including a system to capture reinvestment of direct care time would enable frontline staff to demonstrate impact of the programme. Additionally, staff will need to ensure that reorganisation and instability across the NHS do not affect sustainability and viability of the Productive Ward in the long term.


Subject(s)
Benchmarking , Nursing Process , Patient-Centered Care , State Medicine/standards , Efficiency, Organizational , England , Focus Groups , Hospital Units , Humans , Interviews as Topic
4.
J Clin Nurs ; 22(9-10): 1361-71, 2013 May.
Article in English | MEDLINE | ID: mdl-23472849

ABSTRACT

AIMS AND OBJECTIVES: This systematic review provides an overview of the literature published on Releasing Time to Care: The Productive Ward between 2005 and June 2011. BACKGROUND: Releasing Time to Care: The Productive Ward programme was developed by the NHS Institute for Innovation and Improvement and launched in England in 2007. The programme comprises thirteen modules that aim to increase time for direct patient care, improve the patient and staff experience and make changes to the ward environment to improve efficiency. DESIGN: A systematic literature review. METHODS: The terms 'Releasing Time to Care' and 'Productive Ward' were applied to key healthcare databases; CINAHL, Medline, Science Direct, ProQuest, Health Business Elite, British Nursing Index, Embase, Health Management Information Consortium and PsychInfo. All papers were read and subject to a quality assessment. RESULTS: The literature search identified 95 unique sources. A lack of research on The Productive Ward programme meant it was necessary to include non-empirical literature. In total, 18 articles met the inclusion criteria. Seven key themes were identified: the patient and staff experience, direct care time, patient safety, financial impact, embedding and sustainability, executive support and leadership, and common barriers and determinants of success. It also highlighted areas that require further exploration such as long-term sustainability of the programme and consistent data measurement between organisations. CONCLUSION: The review tentatively reports how The Productive Ward programme has been used to transform nursing practice for the benefit of patients and frontline staff, and how it resulted in cost savings. The literature review identified a potential positive results bias in the current literature whereby favourable outcomes were reported. RELEVANCE TO CLINICAL PRACTICE: This paper summarises the types of evidence and current literature on The Productive Ward providing a reference for frontline staff implementing the programme.


Subject(s)
Efficiency, Organizational , Financial Management, Hospital , Humans , Leadership , Patient Care Team , Patient Safety , Personnel, Hospital/psychology , Quality Improvement , State Medicine , United Kingdom
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