Measures of spiritual issues for palliative care patients: A literature review

Members of the EORTC Quality of Life Group are developing a standalone functional measure of spiritual wellbeing for palliative care patients, which will have both a clinical and a measurement application. This paper discusses data from a literature review, conducted at two time points as part of the development process of this instrument. The review identified 29 existing measures of issues relating to patients’ spirituality or spiritual wellbeing. 22 are standalone measures, of which 15 can be categorised as substantive (investigating the substance of respondents’ beliefs), and 7 as functional (exploring the function those beliefs serve). However, perhaps owing to the lack of consensus concerning spirituality or spiritual wellbeing, the functional measures all have different (although sometimes overlapping) dimensions. In addition, they were all developed in a single cultural context (the US), often with predominantly Christian participants, and most were not developed with palliative care patients. None is therefore entirely suitable for use with palliative care patients in the UK or continental Europe

“Going down” and “getting deeper”: Physical and metaphorical location and movement in relation to death and spiritual care in a Scottish hospice

The final version of the article can be accessed at the link below.This paper illustrates how attending to the metaphors people use for particular concepts, and to the context in which they use them, can increase our understanding of the meanings they attach to those concepts. It considers two linked emergent findings from an ethnographic exploration of spiritual care in a Scottish hospice: 1) the relationship between the perceived likelihood of palliative care patients’ deaths and their physical location in and movement between various parts of the hospice, and 2) the use of physical metaphors to describe both the increased probability of particular patients’ deaths (“going down” or “going downhill”), and spiritual care (“getting deeper”). The paper explores these findings and the relationships between them. It discusses how workers in this hospice located death somewhere other than “here,” both physically: in private spaces, and metaphorically: DOWN, which has strong negative associations. Workers also metaphorically located spirituality elsewhere: DEEP, so that “getting deeper” with patients meant that workers metaphorically accompanied them somewhere else. Although DEEP does not have the negative connotations of DOWN, “getting deeper” might mean encountering distressing, or DOWN, emotions. Many workers sought to counter these negatively perceived emotions by “cheering up” patients, rather than “getting deeper” with them.Funded by an ESRC PhD studentshi

Art-making and identity work: A qualitative study of women living with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)

This is the author's accepted manuscript. The final published article is available from the link below. Copyright @ 2010 Taylor & Francis.Aims: Identity is at risk in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) because of physical dysfunction, role loss and stigmatisation. This qualitative study explored the contributions of leisure-based art-making to the positive reconstruction of identity for women living with this condition. Method: Thirteen women with CFS/ME participated. They offered reflective accounts about their engagement in art-making in interviews or in writing, which were then thematically analysed. Findings: All described identity loss since becoming ill, and described art-making as offering restorative experiences. Some contrasting themes emerged. About half of the sample portrayed their art projects as constrained by ill-health, and as demonstrating the reality of CFS/ME to others. This sub-group struggled with limited aspirations, tended to create art alone and did not identify themselves as being artists. They were interpreted as “salvaging” aspects of identity through their art-making. Art-making appeared to offer others more substantial identity reconstruction, despite continuing ill-health. Participants in this sub-group described more positive aspirations, fellowship with other art-makers and typically perceived themselves as having become artists since the onset of illness. Conclusion: The study contributes new understandings of the contribution of art-making to the protection and reformulation of identity of people living with CFS/ME

Women's experiences of increasing subjective well-being in CFS/ME through leisure-based arts and crafts activities: A qualitative study

This is the author's accepted manuscript. The final published article is available from the link below. Copyright © 2008 Informa Plc.Purpose. To understand the meanings of art-making among a group of women living with the occupational constraints and stigma of CFS/ME. The study explored their initial motives for art-making, and then examined how art-making had subsequently influenced their subjective well-being. Method. Ten women with CFS/ME were interviewed; three provided lengthy written accounts to the interview questions. Findings. Illness had resulted in devastating occupational and role loss. Participants took many years to make positive lifestyle changes. Art-making was typically discovered once participants had accepted the long-term nature of CFS/ME, accommodated to illness, and reprioritized occupations. Several factors then attracted participants specifically to art-making. It was perceived as manageable within the constraints of ill-health. Participants also tended to be familiar with craft skills; had family members interested in arts and crafts, and some desired a means to express grief and loss. Once established as a leisure activity, art-making increased subjective well-being mainly through providing increased satisfaction in daily life, positive self-image, hope, and contact with the outside world. Participants recommended provision of occupational/recreational counselling earlier in the illness trajectory. Conclusions. Creative art-making occurred as part of a broader acceptance and adjustment process to CFS/ME, and allowed some psychological escape from a circumscribed lifeworld

Comment on Ramos-Rincon et al. Palliative Sedation in COVID-19 End-of-Life Care. Retrospective Cohort Study. Medicina 2021, 57, 873

We read with interest the article by Ramos-Rincon and colleagues about patients with COVID-19 dying in acute medical wards in a Spanish University hospital [...

The international phase 4 validation study of the EORTC QLQ-SWB32: a stand-alone measure of spiritual wellbeing (SWB) for people receiving palliative care for cancer

The EORTC Quality of Life (QL) Group has just completed the final phase (field-testing and validation) of an international project to develop a stand-alone measure of spiritual wellbeing (SWB) for palliative cancer patients. Participants (n= 451) - from 14 countries on four continents; 54% female; 188 Christian, 50 Muslim, 156 with no religion - completed a provisional 36-item measure of SWB plus the EORTC QLQ-C15-PAL (PAL), then took part in a structured debriefing interview. All items showed good score distribution across response categories. We assessed scale structure using Principal Component Analysis and Rasch analysis, and explored construct validity, and convergent/divergent validity with the PAL. Twenty-two items in four scoring scales (Relationship with Self, Relationships with Others, Relationship with Something Greater, and Existential) explained 53% of the variance. The measure also includes a global SWB item and nine other items. Scores on the PAL global QL item and Emotional Functioning scale weakly-moderately correlated with scores on the global SWB item and two of the four SWB scales. This new validated 32-item SWB measure addresses a distinct aspect of QL, and is now available for use in research and clinical practice, with a role as both a measurement and an intervention tool

Study protocol: Delayed intervention randomised controlled trial within the Medical Research Council (MRC) Framework to assess the effectiveness of a new palliative care service

Background: Palliative care has been proposed to help meet the needs of patients who suffer progressive non-cancer conditions but there have been few evaluations of service development initiatives. We report here a novel protocol for the evaluation of a new palliative care service in this context. Methods/Design: Using the MRC Framework for the Evaluation of Complex Interventions we modelled a new palliative care and neurology service for patients severely affected by Multiple Sclerosis (MS). We conducted qualitative interviews with patients, families and staff, plus a literature review to model and pilot the service. Then we designed a delayed intervention randomised controlled trial to test its effectiveness as part of phase II of the MRC framework. Inclusion criteria for the trial were patients identified by referring clinicians as having unresolved symptoms or psychological concerns. Referrers were advised to use a score of greater than 8 on the Expanded Disability Scale was a benchmark. Consenting patients newly referred to the new service were randomised to either receive the palliative care service immediately (fast-track) or after a 12-week wait (standard best practice). Face to face interviews were conducted at baseline (before intervention), and at 4–6, 10–12 (before intervention for the standard-practice group), 16– 18 and 22–24 weeks with patients and their carers using standard questionnaires to assess symptoms, palliative care outcomes, function, service use and open comments. Ethics committee approval was granted separately for the qualitative phase and then for the trial. Discussion: We publish the protocol trial here, to allow methods to be reviewed in advance of publication of the results. The MRC Framework for the Evaluation of Complex Interventions was helpful in both the design of the service, methods for evaluation in convincing staff and the ethics committee to accept the trial. The research will provide valuable information on the effects of palliative care among non-cancer patients and a method to evaluate palliative care in this context

Developing a Core Outcome Set for Prognostic Research in Palliative Cancer Care: Protocol for a Mixed Methods Study

Background: Studies exploring the impact of receiving end-of-life prognoses in patients with advanced cancer use a variety of different measures to evaluate the outcomes, and thus report often conflicting findings. The standardization of outcomes reported in studies of prognostication in palliative cancer care could enable uniform assessment and reporting, as well as intertrial comparisons. A core outcome set promotes consistency in outcome selection and reporting among studies within a particular population. We aim to develop a set of core outcomes to be used to measure the impact of end-of-life prognostication in palliative cancer care. Objective: This protocol outlines the proposed methodology to develop a core outcome set for measuring the impact of end-of-life prognostication in palliative cancer care. Methods: We will adopt a mixed methods approach consisting of 3 phases using methodology recommended by the Core Outcome Measure in Effectiveness Trials (COMET) initiative. In phase I, we will conduct a systematic review to identify existing outcomes that prognostic studies have previously used, so as to inform the development of items and domains for the proposed core outcome set. Phase II will consist of semistructured interviews with patients with advanced cancer who are receiving palliative care, informal caregivers, and clinicians, to explore their perceptions and experiences of end-of-life prognostication. Outcomes identified in the interviews will be combined with those found in existing literature and taken forward to phase III, a Delphi survey, in which we will ask patients, informal caregivers, clinicians, and relevant researchers to rate these outcomes until consensus is achieved as to which are considered to be the most important for inclusion in the core outcome set. The resulting, prioritized outcomes will be discussed in a consensus meeting to agree and endorse the final core outcome set. Results: Ethical approval was received for this study in September 2022. As of July 2023, we have completed and published the systematic review (phase I) and have started recruitment for phase II. Data analysis for phase II has not yet started. We expect to complete the study by October 2024. Conclusions: This protocol presents the stepwise approach that will be taken to develop a core outcome set for measuring the impact of end-of-life prognostication in palliative cancer care. The final core outcome set has the potential for translation into clinical practice, allowing for consistent evaluation of emerging prognostic algorithms and improving communication of end-of-life prognostication. This study will also potentially facilitate the design of future clinical trials of the impact of end-of-life prognostication in palliative care that are acceptable to key stakeholders