Papers by Sheila A. Payne
BMC Palliative Care, Jul 13, 2016
Background: Compassionate support at the end of life should not be the responsibility of health a... more Background: Compassionate support at the end of life should not be the responsibility of health and social care professionals alone and requires a response from the wider community. Volunteers, as community members, are a critical part of many end-of-life care services. The impact of their services on important outcomes such as quality of life is currently poorly understood. The purpose of this study is to evaluate a series of social action initiatives which use volunteers to deliver befriending services to people anticipated to be in their last year of life. The aim is to determine if receiving care from a social action volunteer befriending service plus usual care significantly improves quality of life in the last year of life. Methods/design: The research questions will be addressed through a wait-list randomised controlled trial (WLRCT) and qualitative case study evaluation across 12 sites in England. Participants will be randomly allocated to either receive the social action volunteer befriending service straight away or receive the intervention after a four week wait (wait-list arm). The impact of the intervention on end-of-life experience (quality of life as primary outcome, loneliness, social support) will be measured. Repeated assessments will be carried out at baseline and weeks 4 and 8 for the intervention arm and weeks 4, 8 and 12 for the wait-list arm. For selected sites case study evaluation will include interviews, observation and documentary analysis to understand the mechanisms underpinning any found impact. Discussion: This study will address the need to both provide services which use social action models to support end-of-life care in community settings, and to robustly evaluate these models to determine if they influence the experience of end-of-life care. Such services could work to reduce isolation, help meet emotional needs and maintain a sense of connectedness to the community. ISRCTN 12929812 Registered 20.5.15
Progress in Palliative Care, Nov 26, 2013
Abstract Objective To assess the extent to which a grants programme to fund improvements to Engli... more Abstract Objective To assess the extent to which a grants programme to fund improvements to English inpatient hospice buildings achieved its goals of involving and directly benefiting older people. Method Qualitative content analysis was undertaken of all grant application forms which (a) resulted in funding, and (b) proposed to refurbish or replace inpatient hospice buildings. Data were extracted, and themes identified, on the nature and extent of the benefits envisaged for older people, and how older people were involved in the proposed building projects. Results Of 227 grant applications, 139 (from 111 hospices) met the inclusion criteria. Four categories of building improvement were identified: interior decoration or equipment (n = 386, or 36% of the total); public spaces (n = 291, or 27%), private spaces (n = 283, or 26%), and health and safety (n = 116, or 11%). These improvements, while generally beneficial, were rarely targeted at older people. Most grant applicants stated that they had consulted service users, but only 13 specified that they consulted older people. Limited information was supplied about the methods or findings of these consultations. In 15 grant applications, older people were not mentioned at all. Conclusions Older hospice inpatients, their relatives and advocacy groups should be involved more fully in decisions relating to the physical environment of care. Staff who prepare funding bids should receive training in conducting consultations with service users, and identifying and evaluating other relevant evidence. To ensure a consistently high standard of environmental provision for older people in hospices, evidence-based assessment tools and guidelines should be developed.
Palliative Medicine, Mar 13, 2013
Background: Dementia is a life limiting illness and is becoming a major cause of death in develop... more Background: Dementia is a life limiting illness and is becoming a major cause of death in developed countries. Many people with dementia die in nursing homes or long-term residential care settings. Spouse caregivers of people with dementia living in nursing homes find themselves in a position which is difficult to understand and live with. Aim: To explore the caregiving experiences of spouse carers of people with advanced dementia living in nursing homes. Design: Longitudinal narrative study using three sequential interviews and diary accounts. Setting/participants: Spouse caregivers of people with dementia nearing the end of life were recruited from two nursing homes in Northern England. Results: Twenty-seven interviews were conducted and seven diaries collected from 10 spouse caregivers (7 women and 3 men). We demonstrate that for this group the experience of caregiving is one of struggle to live in ‘two worlds’, the world of the nursing home and the world of wider society, where, in both settings, their role is often ambiguous and their position liminal. We also identify that feelings of guilt associated with nursing home placement of a spouse with dementia endure far beyond the time of the move. Conclusions: Nursing home staff need to acknowledge spouse carers in their own right, inviting them to tell their stories. We recommend that communication skills be included in educational programmes for nursing home staff. Further research is needed to determine the shape and context of carer needs assessment and support, as recommended in health policy.
BMC Palliative Care, Dec 1, 2016
Evangelia Papavasiliou worked on this protocol and the first few months of the project, but moved... more Evangelia Papavasiliou worked on this protocol and the first few months of the project, but moved before the submission of the paper and was erroneously omitted in the original version of the paper [1]. The authors would like to acknowledge her work on the protocol and as a contributing author, and her details are therefore included in this erratum. With this in mind, the authors would also like to update the sections mentioned below: New 'Competing Interests' statement: The individuals (principal investigators and research associates) and the institutions involved in this trial declare no conflict of interests. New ' Author Contributions' statement: The study was conceived by CW, NP, SP, GPA and NO. SD, EP and MH are responsible for operationalising the protocol. CW is chief investigator for the study. New ' Acknowledgement' Section: We acknowledge the contributions of the people who take part in this research, often at a time of great challenge in their lives, thank you. This study would not be possible without the support of the participating sites, who are responsible for identifying participants, taking consent, and managing study participants and site specific documentation.
BMC Medicine, Dec 1, 2016
Background: Clinical care alone at the end of life is unlikely to meet all needs. Volunteers are ... more Background: Clinical care alone at the end of life is unlikely to meet all needs. Volunteers are a key resource, acceptable to patients, but there is no evidence on care outcomes. This study aimed to determine whether support from a social action volunteer service is better than usual care at improving quality of life for adults in the last year of life. Methods: A pragmatic, multi-centre wait-list controlled trial, with participants randomly allocated to receive the volunteer support intervention either immediately or after a 4 week wait. Trained volunteers provided tailored face-to-face support including befriending, practical support and signposting to services, primarily provided within the home, typically for 2-3 hours per week. The primary outcome was rate of change of quality of life at 4 weeks (WHO QOL BREF, a general, culturally sensitive measure). Secondary outcomes included rate of change of quality of life at 8 weeks and Loneliness (De Jong Gierveld Loneliness Scale), social support (mMOS-SS), and reported use of health and social care services at 4 and 8 weeks. Results: In total, 196 adults (61% (n = 109) female; mean age 72 years) were included in the study. No significant difference was found in main or secondary outcomes at 4 weeks. Rate of change of quality of life showed trends in favour of the intervention (physical quality of life domain: b = 3.98, CI,-0.38 to 8.34; psychological domain: b = 2.59, CI,-2.24 to 7.43; environmental domain: b = 3, CI,-4.13 to 4.91). Adjusted analyses to control for hours of volunteer input found significantly less decrease in physical quality of life in the intervention group (slope (b) 4. 43, CI, 0.10 to 8.76). While the intervention also favoured the rate of change of emotional (b =-0.08; CI,-0.52 to 0. 35) and social loneliness (b =-0.20; CI,-0.58 to 0.18), social support (b = 0.13; CI,-0.13 to 0.39), and reported use of health and social care professionals (b = 0.16; CI,-0.22 to 0.55), these were not statistically significant. No adverse events were reported. Conclusions: Clinicians can confidently refer to volunteer services at the end of life. Future research should focus on 'dose' to maximise likely impact. Trial registration: The trial was prospectively registered. ISRCTN Registry: ISRCTN12929812, registered 20 May 2015.
European Journal of Oncology Nursing, Aug 1, 2017
Previous conceptualizations of cancer survivorship have focused on heterogeneous cancer survivors... more Previous conceptualizations of cancer survivorship have focused on heterogeneous cancer survivors, with little consideration of the validity of conclusions for homogeneous tumour groups. This paper aims to examine the concept of cancer survivorship in the context of colorectal cancer (CRC). Method: Rodgers' (1989) Evolutionary Method of Concept Analysis guided this study. A systematic search of PUBMED, CINAHL, PsycINFO and The Cochrane Library was conducted in November 2016 to identify studies of CRC survivorship. The Braun and Clarke (2006) framework guided the analysis and interpretation of data extracted from eighty-five publications. Results: Similar to general populations of cancer survivors, CRC survivors experience survivorship as an individual, life-changing process, punctuated by uncertainty and a duality of positive and negative outcomes affecting quality of life. However, CRC survivors experience specific concerns arising from the management of their disease. The concept of cancer survivorship has evolved over the past decade as the importance of navigating the healthcare system and its resources, and the constellation of met and unmet needs of cancer survivors are realised. Conclusions: The results highlight core similarities between survivorship in the context of CRC and other tumour groups, but underlines issues specific to CRC survivorship. Communication and support are key issues in survivorship care which may detrimentally affect CRC survivors' well-being if they are inadequately addressed. Healthcare professionals (HCP's) therefore have a duty to ensure cancer survivors' health, information and supportive care needs are met in the aftermath of treatment.
As part of the Palliative Sedation project funded by the European Union’s Horizon 2020 program... more As part of the Palliative Sedation project funded by the European Union’s Horizon 2020 programme (grant no. 825700) entitled Palliative Sedation (SC1-BHC-23-2018 A) (https://palliativesedation.eu), the aim of our study was to revise and update the 2009 European Association for Palliative Care (EAPC) framework on palliative sedation. For this framework as for other guidelines on palliative sedation the general weakness of its methodological development and the lack of consensus on terminology and concepts has been criticized, and issues such as the complexity of assessing refractory symptoms or the differentiation between somatic, psychological and existential suffering have remained under controversial debate. For the new framework a rigid consensus methodology with a four-step Delphi procedure involving international experts and a European cancer patient organisation has been used. The development of the recommendations addressed all relevant methodological and content aspects ...
BMC Palliative Care, Dec 23, 2022
Background: Patients at the end-of-life may experience refractory symptoms of which pain, deliriu... more Background: Patients at the end-of-life may experience refractory symptoms of which pain, delirium, vomiting and dyspnea are the most frequent. Palliative sedation can be considered a last resort option to alleviate one or more refractory symptoms. There are only a limited number of (qualitative) studies exploring the experiences of relatives of sedated patients and their health care professionals (HCPs). The aims of this study protocol are: 1) to elicit the experiences of bereaved relatives and health care professionals of patients treated with palliative sedation and 2) to explore the understanding of the decision-making process to start palliative sedation across care settings in 5 European countries. Methods: This study protocol is part of the larger HORIZON 2020 Palliative Sedation project. Organisational case study methodology will be used to guide the study design. In total, 50 cases will be conducted in five European countries (10 per country). A case involves a semi-structured interview with a relative and an HCP closely involved in the care of a deceased patient who received some type of palliative sedation at the end-of-life. Relatives and health care professionals of deceased patients participating in a linked observational cohort study of sedated patients cared for in hospital wards, palliative care units and hospices will be recruited. The data will be analyzed using a framework analysis approach. The first full case will be analyzed by all researchers after being translated into English using a preprepared code book. Afterwards, bimonthly meetings will be organized to coordinate the data analysis. Discussion: The study aims to have a better understanding of the experiences of relatives and professional caregivers regarding palliative sedation and this within different settings and countries. Some limitations are: 1) the sensitivity of the topic may deter some relatives from participation, 2) since the data collection and analysis will be performed by at least 5 different researchers in 5 countries, some differences may occur which possibly makes it difficult to compare cases, but using a rigorous methodology will minimize this risk.
BMC Palliative Care
Background Palliative sedation involves the intentional lowering of consciousness at the end of l... more Background Palliative sedation involves the intentional lowering of consciousness at the end of life. It can be initiated to relieve a patient’s burden caused by refractory symptoms at the end of life. The impact of palliative sedation needs to be clinically monitored to adjust the proper dose and regimen of sedative medication to ensure that patients are at ease and comfortable at the end of their lives. Although there is consensus among health care professionals and within guidelines that efficacy of palliative sedation needs to be closely monitored, there is no agreement about how, when, and by whom, this monitoring should be performed. The aim of this study is to evaluate the effects of palliative sedation by measuring the discomfort levels and sedation/agitation levels of the patients at regular timepoints. In addition, the clinical trajectories of those patients receiving palliative sedation will be monitored and recorded. Methods The study is an international prospective non-...
Journal of Palliative Medicine
In 2009, the European Association for Palliative Care (EAPC) developed a framework on palliative ... more In 2009, the European Association for Palliative Care (EAPC) developed a framework on palliative sedation, acknowledging this practice as an important and ethically acceptable intervention of last resort for terminally ill patients experiencing refractory symptoms. Before and after that, other guidelines on palliative sedation have been developed in Europe with variations in terminology and concepts. As part of the Palliative Sedation project (Horizon 2020 Funding No. 825700), a revision of the EAPC framework is planned. The aim of this article is to analyze the most frequently used palliative sedation guidelines as reported by experts from eight European countries to inform the discussion of the new framework. The three most reported documents per country were identified through an online survey among 124 clinical experts in December 2019. Those meeting guideline criteria were selected. Their content was assessed against the EAPC framework on palliative sedation. The quality of their methodology was evaluated with the Appraisal Guideline Research and Evaluation (AGREE) II instrument. Nine guidelines were included. All recognize palliative sedation as a last-resort treatment for refractory symptoms, but the criterion of refractoriness remains a matter of debate. Most guidelines recognize psychological or existential distress as (part of) an indication and some make specific recommendations for such cases. All agree that the assessment should be multiprofessional, but they diverge on the expertise required by the attending physician/team. Regarding decisions on hydration and nutrition, it is proposed that these should be independent of those for palliative sedation, but there is no clear consensus on the decision-making
Journal of Palliative Medicine, 2021
Background: Nominal group technique (NGT) is a well-established research method for establishing ... more Background: Nominal group technique (NGT) is a well-established research method for establishing consensus. Owing to the COVID-19 pandemic, research methods need to be adapted to engage with participants online. Objective: To determine the feasibility and acceptability of adapting NGT to an online format. Setting: Palliative care clinicians (n = 31) in Greece, Romania, and Spain. Methods: NGT discussions were used to elicit palliative care clinicians' opinions, and to rank priorities regarding their understanding and needs about clinical research. Preliminary online training of country-based facilitators was followed by content analysis of debriefing reports to capture learning related to the online NGT format. Results/Implementation: Three NGT sessions used online platforms (Zoom/MS Office/Mentimeter) for the meetings. Analysis of the facilitator reports generated three themes: preparation/facilitation/timing; optimizing technology; and interactions. Conclusions: Conducting NGT meetings online is viable and may be advantageous when compared with traditional face-to-face meetings, but requires careful preparation for participants to contribute effectively.
BMC Medicine, 2020
Background The number of residents in long-term care facilities (LTCFs) in need of palliative car... more Background The number of residents in long-term care facilities (LTCFs) in need of palliative care is growing in the Western world. Therefore, it is foreseen that significantly higher percentages of budgets will be spent on palliative care. However, cost-effectiveness analyses of palliative care interventions in these settings are lacking. Therefore, the objective of this paper was to assess the cost-effectiveness of the ‘PACE Steps to Success’ intervention. PACE (Palliative Care for Older People) is a 1-year palliative care programme aiming at integrating general palliative care into day-to-day routines in LTCFs, throughout seven EU countries. Methods A cluster RCT was conducted. LTCFs were randomly assigned to intervention or usual care. LTCFs reported deaths of residents, about whom questionnaires were filled in retrospectively about resource use and quality of the last month of life. A health care perspective was adopted. Direct medical costs, QALYs based on the EQ-5D-5L and cos...
Palliative Medicine, 2020
Background: Palliative sedation is the monitored use of medications intended to relieve refractor... more Background: Palliative sedation is the monitored use of medications intended to relieve refractory suffering. The assessment of palliative sedation has been focused on the assess of the level of consciousness but a more comprehensive approach to assessment is needed. Aim: To understand how the potential effects and possible adverse events of palliative sedation in Palliative Care patients are measured. Design: Integrative review of most recent empirical research. Data sources: Cochrane Library, Embase, Medline, PubMed, and CINAHL were searched (2010–2020) using the terms sedation, palliative care, terminal care, assessment. Limits included studies in English and adults. Inclusion criteria were: scientific assessment papers, effects and complications of palliative sedation; patients with incurable illness. Results: Out of 588 titles, 26 fulfilled inclusion criteria. The Discomfort Scale-Dementia of Alzheimer Type and Patient Comfort Score were used to assess comfort. The Richmond Agi...
Journal of Pain and Symptom Management, 2020
Context. Near the end of life when patients experience refractory symptoms, palliative sedation m... more Context. Near the end of life when patients experience refractory symptoms, palliative sedation may be considered as a last treatment. Clinical guidelines have been developed, but they are mainly based on expert opinion or retrospective chart reviews. Therefore, evidence for the clinical aspects of palliative sedation is needed. Objectives. To explore clinical aspects of palliative sedation in recent prospective studies. Methods. Systematic review was conducted following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and registered at PROSPERO. PubMed, CINAHL, Cochrane, MEDLINE, and EMBASE were searched (January 2014eDecember 2019), combining sedation, palliative care, and prospective. Article quality was assessed. Results. Ten prospective articles were included, involving predominantly patients with cancer. Most frequently reported refractory symptoms were delirium (41%e83%), pain (25%e65%), and dyspnea (16%e59%). In some articles, psychological and existential distress were mentioned (16%e59%). Only a few articles specified the tools used to assess symptoms. Level of sedation assessment tools were the Richmond Agitation Sedation Scale, Ramsay Sedation Scale, Glasgow Coma Scale, and Bispectral Index monitoring. The palliative sedation practice shows an underlying need for proportionality in relation to symptom intensity. Midazolam was the main sedative used. Other reported medications were phenobarbital, promethazine, and anesthetic medicationdpropofol. The only study that reported level of patient's discomfort as a palliative sedation outcome showed a decrease in patient discomfort. Conclusion. Assessment of refractory symptoms should include physical evaluation with standardized tools applied and interviews for psychological and existential evaluation by expert clinicians working in teams. Future research needs to evaluate the effectiveness of palliative sedation for refractory symptom relief.
Background ‘PACE Steps to Success’ is a multicomponent training program aiming to integrate gener... more Background ‘PACE Steps to Success’ is a multicomponent training program aiming to integrate generalist and non-disease-specific palliative care in nursing homes. This program did not improve residents’ comfort in the last week of life, but it appeared to improve quality of care and dying in their last month of life. Because this program included only three dementia-specific elements, its effects might differ depending on the presence or stage of dementia. We aimed to investigate whether the program effects differ between residents with advanced, non-advanced, and no dementia.Methods Pre-planned subgroup analysis of the PACE cluster-randomized controlled trial in 78 nursing homes in seven European countries. Participants included residents who died in the previous four months and had advanced (n=104 to 177), non-advanced (n=110 to 167) or no dementia (n=137 to 157). The nursing home staff or general practitioner assessed the presence of dementia; severity was determined using two hig...
Acta Oncologica, 2017
Background: The Institute of Medicine report 'From Cancer Patient to Cancer Survivor' has drawn w... more Background: The Institute of Medicine report 'From Cancer Patient to Cancer Survivor' has drawn widespread attention to the experiences of cancer survivors. Research examining the symptom experiences of survivors are proliferative within the literature but limited by samples which include multiple tumor groups and varying inclusion criteria. This cross-sectional quantitative study seeks to examine pain and quality of life (QoL) in the context of colorectal cancer (CRC) survivorship, as defined by the Institute of Medicine. Material and methods: A purposive sample of CRC survivors (n ¼ 252) attending hospitals and cancer support centers in the Republic of Ireland were recruited between September 2014 and January 2016. Self-rated health (SRH), QoL and pain were assessed in the sample using the EuroQOL questionnaire, the Functional Assessment of Therapy-Colorectal (FACT-C) questionnaire, and symptom experience items. Results: One hundred participants (40%) indicated they had pain on the day of the survey or in the past week. Of those with pain, many also experienced a lack of energy (95%), bowel dysfunction (74%), sleep disturbance (76%) or interference with their ability to enjoy life (75%). Pain was associated with younger age, female gender, current chemotherapy treatment, and previous radiotherapy treatment. Although participants reported positive QoL scores, statistical analysis revealed pain was linked to significantly poorer SRH and overall QoL, and poorer physical, emotional, functional, social/family and CRC-specific wellbeing, compared to those who did not indicate pain. Discussion: Pain was experienced by almost two fifths of CRC survivors up to five years after treatment and was associated with poorer SRH and QoL. In light of these findings, healthcare professionals must endeavor to manage cancer survivors' needs in a manner which is cognizant of the burden of pain and in the context of other symptoms and morbidities experienced by long-term cancer survivors.
BMJ Supportive & Palliative Care, 2017
Objectives Palliative sedation is a highly debated medical practice, particularly regarding its p... more Objectives Palliative sedation is a highly debated medical practice, particularly regarding its proper use in end-of-life care. Worldwide, guidelines are used to standardise care and regulate this practice. In this review, we identify and compare national/regional clinical practice guidelines on palliative sedation against the European Association for Palliative Care (EAPC) palliative sedation Framework and assess the developmental quality of these guidelines using the Appraisal Guideline Research and Evaluation (AGREE II) instrument. Methods Using the PRISMA criteria, we searched multiple databases (PubMed, CancerLit, CINAHL,
BMC palliative care, Jan 8, 2016
Integrated Palliative Care (PC) strategies are often implemented following models, namely standar... more Integrated Palliative Care (PC) strategies are often implemented following models, namely standardized designs that provide frameworks for the organization of care for people with a progressive life-threatening illness and/or for their (in)formal caregivers. The aim of this qualitative systematic review is to identify empirically-evaluated models of PC in cancer and chronic disease in Europe. Further, develop a generic framework that will consist of the basis for the design of future models for integrated PC in Europe. Cochrane, PubMed, EMBASE, CINAHL, AMED, BNI, Web of Science, NHS Evidence. Five journals and references from included studies were hand-searched. Two reviewers screened the search results. Studies with adult patients with advanced cancer/chronic disease from 1995 to 2013 in Europe, in English, French, German, Dutch, Hungarian or Spanish were included. A narrative synthesis was used. 14 studies were included, 7 models for chronic disease, 4 for integrated care in oncol...
BMC Palliative Care, 2016
Health & place, Jan 22, 2016
Public Health England (2013) survey data indicates that while the place of death is geographicall... more Public Health England (2013) survey data indicates that while the place of death is geographically uneven across England, given a choice, many older people nearing end of life would prefer to die at home. There is, however, a growing critique that policies designed to support home death fail to understand the needs and preferences of older people and the impact on family carers. Such policies also make assumption about within whose home the home death takes place. Hence, there are major gaps in our understanding of firstly, where and how care work undertaken by family members within domestic settings takes place; and secondly, how it can create tensions between home and care that fundamentally disrupt the physical and socio-emotional meaning of home for family carers, impacting on their sense of home post-death. This can have consequences for their own well-being. In this paper we draw on interview data from our 'Unpacking the Home' study to elicit an in-depth understanding ...
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Papers by Sheila A. Payne
Aim: To investigate the perception of support for adults with MS of men caring for adults severely affected by MS.
Method: Questionnaire survey design. Questionnaire developed from initial qualitative interviews. Widely disseminated via UK MS Society.
Findings: 231 men took part (85% online, 15% by post). Most cared for an adult with Secondary Progressive (44.2%) or Primary Progressive MS (37%). Men lived in 45 UK counties, mean age was 60 years, and half reported spending at least 50 hours a week caring (52%). A third (34%) had not tried to access advice/information about support/services. Of those that had, most found it ‘very’ (15%) or ‘fairly easy to find’ (54%). Men aged under 55 years reported most difficulty in accessing information (p=0.006). Twenty five percent of men had received no support/services in the last year. Of the remainder, 67% reported the support/services had ‘made things easier’. Most men reported the amount of support received ‘was about right’ (68%), and rated professional care staff as ‘completely’ (16%), ‘very’ (37%) or ‘fairly reliable’ (32%). Most men were ‘extremely (8%), ‘very (29%) or ‘fairly satisfied’ (30%) with support from social services. Those still working reported significantly more dissatisfaction than retired men (p=0.05).
Conclusions: Men were largely positive, but not effusive, about services/support available to them and the person in their care. Younger men repeatedly differed in their perceptions, suggesting that they either have higher expectations, greater need or both. Health professionals need to consider the specific needs of men carers."