Supporting carers to manage pain medication in cancer patients at the end of life: A feasibility trial

Latter, Sue; Hopkinson, Jane B.; Lowson, Elizabeth; Hughes, Jane; Hughes, Jacqueline; Duke, Sue; Anstey, Sally; Bennett, Mike; May, Carl; Smith, Peter; Richardson, Alison

doi:10.1177/0269216317715197

Cited by 23 publications

(37 citation statements)

References 38 publications

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“…NPT provided a framework for further development of the intervention United Kingdom Primary Care 28. Latter et al [ 81 ] Normalisation Process Theory To develop a pain medicines management intervention for cancer patients’ carers and evaluate feasibility and acceptability to nurses and carers. Interview guides were informed by NPT United Kingdom Primary Care 39.…”

Section: Resultsmentioning

confidence: 99%

“…Many of the approaches were used to guide study design and analysis. In this process, authors noted that the approaches aided analysis and interpretation of data [ 52 , 55 , 60 , 63 , 64 , 68 , 70 , 76 , 77 , 81 , 89 , 94 , 98 , 105 , 107 , 108 , 111 ]. For example, within Sanders et al’s article, the NPT was used to organise their semi-structured interview data [ 94 ].…”

Section: Resultsmentioning

confidence: 99%

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Making change last? Exploring the value of sustainability approaches in healthcare: a scoping review

Lennox

Linwood-Amor

Maher

et al. 2020

Health Res Policy Sys

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Background Numerous models, tools and frameworks have been produced to improve the sustainability of evidence-based interventions. Due to the vast number available, choosing the most appropriate one is increasingly difficult for researchers and practitioners. To understand the value of such approaches, evidence warranting their use is needed. However, there is limited understanding of how sustainability approaches have been used and how they have impacted research or practice. This review aims to consolidate evidence on the application and impact of sustainability approaches in healthcare settings. Methods A systematic scoping review was designed to search for peer-reviewed publications detailing the use of sustainability approaches in practice. A 5-stage framework for scoping reviews directed the search strategy, and quality assessment was performed using the Mixed Method Appraisal Tool. Searches were performed through electronic citation tracking and snowballing of references. Articles were obtained through Web of Science, PubMed and Google Scholar. Six outcome variables for sustainability were explored to ascertain impact of approaches. Results This review includes 68 articles demonstrating the application of sustainability approaches in practice. Results show an increase in the use of sustainability approaches in peer-reviewed studies. Approaches have been applied across a range of healthcare settings, including primary, secondary, tertiary and community healthcare. Approaches are used for five main purposes, namely analysis, evaluation, guidance, assessment and planning. Results outline benefits (e.g. improved conceptualisation of sustainability constructs and improved ability to interpret sustainability data) and challenges (e.g. issues with approach constructs and difficulty in application) associated with using a sustainability approach in practice. Few articles (14/68) reported the sustainability outcome variables explored; therefore, the impact of approaches on sustainability remains unclear. Additional sustainability outcome variables reported in retrieved articles are discussed. Conclusions This review provides practitioners and researchers with a consolidated evidence base on sustainability approaches. Findings highlight the remaining gaps in the literature and emphasise the need for improved rigour and reporting of sustainability approaches in research studies. To guide future assessment and study of sustainability in healthcare settings an updated list of sustainability outcome variables is proposed. Trial Registration This review was registered on the PROSPERO database CRD 42016040081 in June 2016.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Making change last? Exploring the value of sustainability approaches in healthcare: a scoping review

Lennox

Linwood-Amor

Maher

et al. 2020

Health Res Policy Sys

View full text Add to dashboard Cite

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“…Regarding the year of publication, 36 out of 62 articles were published in 2017 and 28 in 2018. Countries where the respective studies were conducted were the USA/Canada ( n = 23) [9,10,11,12,13,14,15,16,17,18,19,20,21,22,23,24,25,26,27,28,29,30,31], Scandinavia ( n = 7) [32,33,34,35,36,37,38], UK ( n = 4) [39,40,41,42], Germany ( n = 4) [43,44,45,46], Southern Europe (Italy, Portugal, Spain; n = 8) [47,48,49,50,51,52,53,54], East Asia (Japan, China, Korea, Taiwan; n = 4) [55,56,57,58,59,60], Australia/New Zealand ( n = 4) [61,62,63,64], other ( n = 4) [65,66,67,68], and multinational ( n = 2) [69,70].…”

Section: Resultsmentioning

confidence: 99%

Current Advances in Palliative & Hospice Care: Problems and Needs of Relatives and Family Caregivers During Palliative and Hospice Care—An Overview of Current Literature

Oechsle

2019

Medical Sciences

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Palliative and hospice care aims to improve quality of life of patients’ relatives, but still little is known about their specific problems and needs. We present a comprehensive literature update. Narrative review to present an expert overview of peer-reviewed, English-written original research publications and reviews on psychosocial and existential problems, supportive needs as well as interventions for relatives during the patients’ disease trajectory published between January 2017 and November 2018. A total of 64 publications were included. Relatives report high rates of psychological and existential distress, burden and psychological morbidity during the total disease trajectory of the patient. In addition, relatives report an alarmingly high number of unmet needs with information being the central issue. Relatives’ problems and needs are part of complex systems influenced by various socio-demographic factors and patient–relatives-interactions and dependency between different psychological phenomena. First support interventions for relatives during disease trajectory have proven feasible and secondary data from randomized studies suggest beneficial effects of providing early palliative care also for relatives. Relatives should be addressed to a still larger extent in the daily practice of palliative and hospice care, thus further research to reveal more detailed systematic information is needed to improve relatives’ psychological burden and quality of life.

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“…The evidence that is beginning to accumulate mostly focuses on patients who have capacity in the last year of their life. UK and Australian research includes 'Unpacking the home', 27,28 the Cancer Carers Medication Management work, 29,30 the SMART (Self-Management of Analgesia and Related Treatments) study 31 and ImPaCCT (Improving Palliative Care through Clinical INTRODUCTION NIHR Journals Library www.journalslibrary.nihr.ac.uk Trials). 32 Our study, by contrast, focuses on the last days of life at home, when the individual's capacity is likely to be limited or absent, with very different implications and issues for carer administration.…”

Section: Rationalementioning

confidence: 99%

Carer administration of as-needed subcutaneous medication for breakthrough symptoms in people dying at home: the CARiAD feasibility RCT

Poolman

Roberts

Wright

et al. 2020

Health Technol Assess

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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.

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Supporting carers to manage pain medication in cancer patients at the end of life: A feasibility trial

Cited by 23 publications

References 38 publications

Making change last? Exploring the value of sustainability approaches in healthcare: a scoping review

Making change last? Exploring the value of sustainability approaches in healthcare: a scoping review

Current Advances in Palliative & Hospice Care: Problems and Needs of Relatives and Family Caregivers During Palliative and Hospice Care—An Overview of Current Literature

Carer administration of as-needed subcutaneous medication for breakthrough symptoms in people dying at home: the CARiAD feasibility RCT

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