Background:
Shared decision-making is a key element of person-centred care and promoted as the favoured model in preference-sensitive decision-making. Limitations to implementation have been ...observed, and barriers and limitations, both generally and in the palliative setting, have been highlighted. More knowledge about the process of shared decision-making in palliative cancer care would assist in addressing these limitations.
Aim:
To identify and synthesise qualitative data on how people with cancer, informal carers and healthcare professionals experience and perceive shared decision-making in palliative cancer care.
Design:
A systematic review and metasynthesis of qualitative studies. We analysed data using inductive thematic analysis.
Data sources:
We searched five electronic databases (MEDLINE, EMBASE, PsycINFO, CINAHL and Scopus) from inception until June 2023, supplemented by backward searches.
Results:
We identified and included 23 studies, reported in 26 papers. Our analysis produced four analytical themes; (1) Overwhelming situation of ‘no choice’, (2) Processes vary depending on the timings and nature of the decisions involved, (3) Patient-physician dyad is central to decision-making, with surrounding support and (4) Level of involvement depends on interactions between individuals and systems.
Conclusion:
Shared decision-making in palliative cancer care is a complex process of many decisions in a challenging, multifaceted and evolving situation where equipoise and choice are limited. Implications for practice: Implementing shared decision-making in clinical practice requires (1) clarifying conceptual confusion, (2) including members of the interprofessional team in the shared decision-making process and (3) adapting the approach to the ambiguous, existential situations which arise in palliative cancer care.
Background:
Little research has explored the detail of practice when using sedative medications at the end of life. One work package of the I-CAN-CARE research programme investigates this in UK ...palliative care.
Aims:
To investigate current practices when using sedative medication at the end of life in London, UK, by (1) qualitatively exploring the understandings of palliative care clinicians, (2) examining documented sedative use in patient records and (3) comparing findings from both investigations.
Design:
We conducted focus groups with experienced palliative care physicians and nurses, and simultaneously reviewed deceased patient records.
Setting/participants:
In total, 10 physicians and 17 senior nurses in London hospice or hospital/community palliative care took part in eight focus groups. Simultaneously, 50 patient records for people who received continuous sedation at end of life in the hospice and hospital were retrieved and reviewed.
Results:
Focus group participants all said that they used sedative medication chiefly for managing agitation or distress; selecting drugs and dosages as appropriate for patients’ individual needs; and aiming to use the lowest possible dosages for patients to be ‘comfortable’, ‘calm’ or ‘relaxed’. None used structured observational tools to assess sedative effects, strongly preferring clinical observation and judgement. The patient records’ review corroborated these qualitative findings, with the median continuous dose of midazolam administered being 10 mg/24 h (range: 0.4–69.5 mg/24 h).
Conclusion:
Clinical practice in these London settings broadly aligns with the European Association for Palliative Care framework for using sedation at the end of life, but lacks any objective monitoring of depth of sedation. Our follow-on study explores the utility and feasibility of objectively monitoring sedation in practice.
Background:
Studies evaluating the impact of prognostication in advanced cancer patients vary in the outcomes they measure, and there is a lack of consensus about which outcomes are most important.
...Aim:
To identify outcomes previously reported in prognostic research with people with advanced cancer, as a first step towards constructing a core outcome set for prognostic impact studies.
Design:
A systematic review was conducted and analysed in two subsets: one qualitative and one quantitative. (PROSPERO ID: CRD42022320117; 29/03/2022).
Data sources:
Six databases were searched from inception to September 2022. We extracted data describing (1) outcomes used to measure the impact of prognostication and (2) patients’ and informal caregivers’ experiences and perceptions of prognostication in advanced cancer. We classified findings using the Core Outcome Measures in Effectiveness Trials (COMET) initiative taxonomy, along with a narrative description. We appraised retrieved studies for quality, but quality was not a basis for exclusion.
Results:
We identified 42 eligible studies: 32 quantitative, 6 qualitative, 4 mixed methods. We extracted 70 outcomes of prognostication in advanced cancer and organised them into 12 domains: (1) survival; (2) psychiatric outcomes; (3) general outcomes; (4) spiritual/religious/existential functioning/wellbeing, (5) emotional functioning/wellbeing; (6) cognitive functioning; (7) social functioning; (8) global quality of life; (9) delivery of care; (10) perceived health status; (11) personal circumstances; and (12) hospital/hospice use.
Conclusion:
Outcome reporting and measurement varied markedly across the studies. A standardised approach to outcome reporting in studies of prognosis is necessary to enhance data synthesis, improve clinical practice and better align with stakeholders’ priorities.
Background:
The use of observational measures to assess palliative care patients’ level of consciousness may improve patient care and comfort. However, there is limited knowledge regarding the ...validity and reliability of these measures in palliative care settings.
Aim:
To identify and evaluate the psychometric performance of observational level of consciousness measures used in palliative care.
Design:
Systematic review; PROSPERO registration: CRD42017073080.
Data sources:
We searched six databases until November 2018, using search terms combining subject headings and free-text terms. Psychometric performance for each identified tool was appraised independently by two reviewers following established criteria for developing and evaluating health outcome measures.
Results:
We found 35 different levels of consciousness tools used in 65 studies. Only seven studies reported information about psychometric performance of just eight tools. All other studies used either ad hoc measures for which no formal validation had been undertaken (n = 21) or established tools mainly developed and validated in non-palliative care settings (n = 37). The Consciousness Scale for Palliative Care and a modified version of the Richmond Agitation–Sedation Scale received the highest ratings in our appraisal, but, since psychometric evidence was limited, no tool could be assessed for all psychometric properties.
Conclusion:
An increasing number of studies in palliative care are using observational measures of level of consciousness. However, only a few of these tools have been tested for their psychometric performance in that context. Future research in this area should validate and/or refine the existing measures, rather than developing new tools.
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.
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.
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.
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.
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.
Core Outcome Measures in Effectiveness Trials 2136; https://www.comet-initiative.org/Studies/Details/2136.
DERR1-10.2196/49774.
Primary sclerosing cholangitis (PSC) is a rare bile duct and liver disease which can considerably impact quality of life (QoL). As part of a project developing a measure of QoL for people with PSC, ...we conducted a systematic review with four review questions. The first of these questions overlaps with a recently published systematic review, so this paper reports on the last three of our initial four questions: (A) How does QoL in PSC compare with other groups?, (B) Which attributes/factors are associated with impaired QoL in PSC?, (C) Which interventions are effective in improving QoL in people with PSC?.
We systematically searched five databases from inception to 1 November 2020 and assessed the methodological quality of included studies using standard checklists.
We identified 28 studies: 17 for (A), ten for (B), and nine for (C). Limited evidence was found for all review questions, with few studies included in each comparison, and small sample sizes. The limited evidence available indicated poorer QoL for people with PSC compared with healthy controls, but findings were mixed for comparisons with the general population. QoL outcomes in PSC were comparable to other chronic conditions. Itch, pain, jaundice, severity of inflammatory bowel disease, liver cirrhosis, and large-duct PSC were all associated with impaired QoL. No associations were found between QoL and PSC severity measured with surrogate markers of disease progression or one of three prognostic scoring systems. No interventions were found to improve QoL outcomes.
The limited findings from included studies suggest that markers of disease progression used in clinical trials may not reflect the experiences of people with PSC. This highlights the importance for clinical research studies to assess QoL alongside clinical and laboratory-based outcomes. A valid and responsive PSC-specific measure of QoL, to adequately capture all issues of importance to people with PSC, would therefore be helpful for clinical research studies.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
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 ....
Spiritual Care in Palliative Care Best, Megan C; Vivat, Bella; Gijsberts, Marie-Jose
Religions (Basel, Switzerland ),
02/2023, Letnik:
14, Številka:
3
Journal Article
Recenzirano
Odprti dostop
Palliative care has always included spiritual care, but the provision and inclusion of spiritual care within and across palliative care services internationally is sub-optimal. In this summary ...overview, we address understandings and meanings of spirituality and related terms, both generally and in the context of healthcare, and outline the importance of spiritual well-being and spiritual care at the end of life. We summarise what spiritual care involves, its benefits for palliative care patients and their families, and consider how its provision might be helped or hindered. There is currently a limited evidence base for the efficacy of interventions including spiritual and/or religious care, and large-scale studies in particular are lacking. However, those mostly small-scale and/or qualitative studies which have been conducted to date show that addressing the spiritual needs of patients in palliative care is associated with many positive outcomes for both patients and their relatives. More research in this area is necessary to develop and enhance the evidence base, and optimal provision of spiritual care requires that providers explicitly recognise the need for such care, including through providing training and support for staff.
Background Throughout the twentieth century, public health agencies and expert healthcare professionals have recognized breastfeeding as the most nutritious and appropriate option for feeding ...infants. The Ecuadorian government, in line with international guidelines, has therefore developed laws and initiatives to improve the initiation and maintenance of breastfeeding, especially among working mothers. However, breastfeeding rates in Ecuador are low. Methods A qualitative methodology following social constructionist approaches was applied to explore the breastfeeding experiences of Ecuadorian women who are both mothers and healthcare professionals. Using snowball sampling, 60 healthcare professionals who breastfed their babies: 20 nurses, 20 physicians, and 20 nutritionists, took part in research interviews lasting between 30 and 92 minutes. All participants are currently offering telehealth or face-to-face consultation to their patients in Ecuador. Since Ecuador is a multicultural country, efforts were made to include participants from different regions of the country. Data gathering employed virtual semi-structured interviews including Photovoice. The interviews were carried out in Spanish, following a semi-structured topic guide. The data analysis employed constant comparative methods. Results The analysis produced three overarching themes: Integrating breastfeeding in life and work; Establishing space for breastfeeding at work; Negotiations and tensions. The first theme: Integrating breastfeeding in life and work addresses participants' corporeal and emotional experiences when breastfeeding. This theme also includes the participants' experiences of how they integrated their maternal identity and adapted their breastfeeding bodies to their daily routines. The second theme: Establishing space for breastfeeding at work includes the challenges that some women encounter when incorporating and seeking to combine breastfeeding in their professional identities. The third theme: Negotiations and tensions covers how this group of female healthcare professionals had to negotiate the time and space to continue breastfeeding their children while working.
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