The experience of delirium in palliative care settings for patients, family, clinicians and volunteers: A qualitative systematic review and thematic synthesis.
Ontology highlight
ABSTRACT: Background
Delirium is common in palliative care settings and is distressing for patients, their families and clinicians. To develop effective interventions, we need first to understand current delirium care in this setting.Aim
To understand patient, family, clinicians' and volunteers' experience of delirium and its care in palliative care contexts.Design
Qualitative systematic review and thematic synthesis (PROSPERO 2018 CRD42018102417).Data sources
The following databases were searched: CINAHL, Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects, Embase, MEDLINE and PsycINFO (2000-2020) for qualitative studies exploring experiences of delirium or its care in specialist palliative care services. Study selection and quality appraisal were independently conducted by two reviewers.Results
A total of 21 papers describing 16 studies were included. In quality appraisal, trustworthiness (rigour of methods used) was assessed as high (n = 5), medium (n = 8) or low (n = 3). Three major themes were identified: interpretations of delirium and their influence on care; clinicians' responses to the suffering of patients with delirium and the roles of the family in delirium care. Nursing staff and other clinicians had limited understanding of delirium as a medical condition with potentially modifiable causes. Practice focused on alleviating patient suffering through person-centred approaches, which could be challenging with delirious patients, and medication use. Treatment decisions were also influenced by the distress of family and clinicians and resource limitations. Family played vital roles in delirium care.Conclusions
Increased understanding of non-pharmacological approaches to delirium prevention and management, as well as support for clinicians and families, are important to enable patients' multi-dimensional needs to be met.
SUBMITTER: Featherstone I
PROVIDER: S-EPMC8189008 | biostudies-literature |
REPOSITORIES: biostudies-literature
Similar Datasets
Project description:ContextPatient engagement in research consists in involving patients as partners across the research cycle. This practice has quickly become an international standard, with funding bodies actively encouraging it. As the increased incentive to engage patients can lead to tokenistic partnerships, it is important to consider the experiences of patient-partners.ObjectiveTo synthesize the qualitative literature on the experience of patients as partners in research.DesignA systematic review of the literature with thematic synthesis was realized, guided by the framework developed by Thomas and Harden (Bmc Med Res Methodol 8: 45, 2008).Data collectionA search strategy was developed to encompass keywords relating to patient-partners in research, their experience, and the qualitative nature of the target studies. 10 databases were searched using the EBSCO-host engine, along with the Scopus engine to include EMBASE. The search results were screened for the following inclusion criteria: articles written in English; articles reporting on the experience of patient-partners in research; qualitative studies or mixed-methods studies with a distinct qualitative section.AnalysisIncluded articles were charted for general information. The CASP qualitative checklist was used for critical appraisal. The "results" section of each article was coded line by line. Codes were aggregated inductively to form descriptive themes and analytical themes, in order to synthesize the ideas found in the selection of articles.ResultsThe initial search yielded 10,222 results. After the removal of duplicates, 5534 titles and abstracts were screened, 88 full-text reports were evaluated, and 41 studies were included. Articles reporting on these studies were published between 2005 and 2020. Seven themes emerged from the analysis: "motivations to engage in research", "activities in patient engagement", "structure", "competence", "team dynamics", "impacts on broader life", and "illness". Articles reported varying degrees of perceived impact on research and satisfaction concerning the level of engagement. The importance of power differentials and team dynamics were widely stated.ConclusionsFindings provide an in-depth view of the experiences of patient-partners in research. Most articles reported a generally positive experience, but challenges and pitfalls of patient engagement were identified. This will serve research teams by highlighting good practices and possible improvements.
| S-EPMC9528123 | biostudies-literature
Project description:Volunteers make a major contribution to palliative patient care, and qualitative studies have been undertaken to explore their involvement. With the aim of making connections between existing studies to derive enhanced meanings, we undertook a systematic review of these qualitative studies including synthesising the findings. We sought to uncover how the role of volunteers with direct contact with patients in specialist palliative care is understood by volunteers, patients, their families, and staff.We searched for relevant literature that explored the role of the volunteer including electronic citation databases and reference lists of included studies, and also undertook handsearches of selected journals to find studies which met inclusion criteria. We quality appraised included studies, and synthesised study findings using a novel synthesis method, thematic synthesis.We found 12 relevant studies undertaken in both inpatient and home-care settings, with volunteers, volunteer coordinators, patients and families. Studies explored the role of general volunteers as opposed to those offering any professional skills. Three theme clusters were found: the distinctness of the volunteer role, the characteristics of the role, and the volunteer experience of the role. The first answers the question, is there a separate volunteer role? We found that to some extent the role was distinctive. The volunteer may act as a mediator between the patient and the staff. However, we also found some contradictions. Volunteers may take on temporary surrogate family-type relationship roles. They may also take on some of the characteristics of a paid professional. The second cluster helps to describe the essence of the role. Here, we found that the dominant feature was that the role is social in nature. The third helps to explain aspects of the role from the point of view of volunteers themselves. It highlighted that the role is seen by volunteers as flexible, informal and sometimes peripheral. These characteristics some volunteers find stressful.This paper demonstrates how qualitative research can be sythnesised systematically, extending methodological techniques to help answer difficult research questions. It provides information that may help managers and service planners to support volunteers appropriately.
| S-EPMC3928898 | biostudies-other
Project description:BackgroundDelirium is a common and distressing neurocognitive condition that frequently affects patients in palliative care settings and is often underdiagnosed.AimExpanding on a 2013 review, this systematic review examines the incidence and prevalence of delirium across all palliative care settings.DesignThis systematic review and meta-analyses were prospectively registered with PROSPERO and included a risk of bias assessment.Data sourcesFive electronic databases were examined for primary research studies published between 1980 and 2018. Studies on adult, non-intensive care and non-postoperative populations, either receiving or eligible to receive palliative care, underwent dual reviewer screening and data extraction. Studies using standardized delirium diagnostic criteria or valid assessment tools were included.ResultsFollowing initial screening of 2596 records, and full-text screening of 153 papers, 42 studies were included. Patient populations diagnosed with predominantly cancer (n = 34) and mixed diagnoses (n = 8) were represented. Delirium point prevalence estimates were 4%-12% in the community, 9%-57% across hospital palliative care consultative services, and 6%-74% in inpatient palliative care units. The prevalence of delirium prior to death across all palliative care settings (n = 8) was 42%-88%. Pooled point prevalence on admission to inpatient palliative care units was 35% (confidence interval = 0.29-0.40, n = 14). Only one study had an overall low risk of bias. Varying delirium screening and diagnostic practices were used.ConclusionDelirium is prevalent across all palliative care settings, with one-third of patients delirious at the time of admission to inpatient palliative care. Study heterogeneity limits meta-analyses and highlights the future need for rigorous studies.
| S-EPMC6691600 | biostudies-literature
Project description:ContextCOVID-19 created unprecedented demand for palliative care at a time when in-person communication was highly restricted, straining efforts to care for patients and families.ObjectivesTo qualitatively explore the challenges presented by the COVID-19 pandemic from the perspective of palliative care clinicians. Specifically we sought to: 1) Describe the strategies adopted by palliative care clinicians to cope with new challenges including patient and clinician isolation, prognostication of an emergent disease, and rapidly rising numbers of severely ill patients; 2) Identify additions or adjustments to in-person and system-related palliative care training, methods, and tools made during pandemics.MethodsThis descriptive qualitative study utilized a thematic approach for data analysis of individual, semi-structured interviews with palliative care clinicians (n = 25). Codes, categories, and emerging themes were identified through an iterative, comparative method. Methods align with the Consolidated Criteria for Reporting Qualitative Research (COREQ) RESULTS: A theme of "Expanding the reach of palliative care for today and the future" was identified with three subthemes: 1) Redefining attitudes and hardship due to collective uncertainty, 2) Breaking with the past towards integrated concept of palliative care, and 3) Building capacity through primary palliative care training.ConclusionCOVID-19 forced hospital systems to consider the inclusion of palliative care in unforeseen ways due to an uncontrollable, unpredictable disease. Faced with unprecedented uncertainty, palliative care clinicians utilized strategies for integration and innovation across hospitals, particularly in intensive care units and emergency departments. A need to build capacity through increased primary palliative care access and training was identified.
| S-EPMC8265891 | biostudies-literature
Project description:BACKGROUND AND AIM:Understanding the experience of initiating injection drug use and its social contexts is crucial to inform efforts to prevent transitions into this mode of drug consumption and support harm reduction. We reviewed and synthesized existing qualitative scientific literature systematically to identify the socio-structural contexts for, and experiences of, the initiation of injection drug use. METHODS:We searched six databases (Medline, Embase, PsychINFO, CINAHL, IBSS and SSCI) systematically, along with a manual search, including key journals and subject experts. Peer-reviewed studies were included if they qualitatively explored experiences of or socio-structural contexts for injection drug use initiation. A thematic synthesis approach was used to identify descriptive and analytical themes throughout studies. RESULTS:From 1731 initial results, 41 studies reporting data from 1996 participants were included. We developed eight descriptive themes and two analytical (higher-order) themes. The first analytical theme focused on injecting initiation resulting from a social process enabled and constrained by socio-structural factors: social networks and individual interactions, socialization into drug-using identities and choices enabled and constrained by social context all combine to produce processes of injection initiation. The second analytical theme addressed pathways that explore varying meanings attached to injection initiation and how they link to social context: seeking pleasure, responses to increasing tolerance to drugs, securing belonging and identity and coping with pain and trauma. CONCLUSIONS:Qualitative research shows that injection drug use initiation has varying and distinct meanings for individuals involved and is a dynamic process shaped by social and structural factors. Interventions should therefore respond to the socio-structural influences on injecting drug use initiation by seeking to modify the contexts for initiation, rather than solely prioritizing the reduction of individual harms through behavior change.
| S-EPMC5673537 | biostudies-literature
Project description:IntroductionPregnancy is a period of special vulnerability for the mental health of women. The arrival of the COVID-19 pandemic altered the routines of pregnant women, its effects on this population are thus far unknown. Therefore, the objective of this study is to understand the impact of the pandemic on the birth experience of women during the state of emergency in Andalusia, Spain.MethodsA qualitative study was conducted with 14 women, using semistructured interviews via telematics. These were recorded and later transcribed using the F4transkript software. In order to analyze the data retrieved from the interviews and identify the main patterns of meaning/responses, the thematic analysis method was applied.ResultsThe main emerging themes were 'prenatal medical care', 'hospital safety', and 'postpartum with COVID-19 restrictions'. The results indicated that the reorganization of perinatal medical care, the lack of information, and the fear of contagion were the factors that most negatively influenced the participants. Instead, the security during the birth process and the tranquility in postpartum were the positive aspects of the birth experiences during COVID-19.ConclusionThis is the first qualitative study in Andalusia that identifies the specific aspects of the COVID-19 pandemic that have affected the mental health of pregnant women. The results contribute to a broader perception of the experience of women and the creation of health protocols for emergencies akin to the COVID-19 pandemic.
| S-EPMC10038889 | biostudies-literature
Project description:BackgroundMore patients are dying in non-palliative care settings than in palliative care settings. How health care providers care for adult patients at the end-of-life stage in non-palliative care settings has not been adequately explored. The aim of this study was to explore the experiences of health care providers in caring for patients at the end-of-life stage in non-palliative care settings.MethodsThis is a qualitative study. Twenty-six health care providers from eight health care institutions which are based in Shanghai were interviewed individually between August 2016 and February 2017. Three levels of health care, i.e., acute care, sub-acute care, or primary care, was provided in the health care institutions. The interviews were analyzed using qualitative content analysis.ResultsThree themes emerged from the interviews: (i) Definition of the end-of-life stage: This is mainly defined based on a change in treatment. (ii) Health care at the end-of-life stage: Most patients spent their last weeks in tertiary/secondary hospitals, transferring from one location to another and receiving disease- and symptom-focused treatment. Family-dominated decision making was common when discussing treatment options. Nurses instinctively provided extra care attention to patients, but nursing care is still task-oriented. (iii) Challenges, difficulties, and the future. From the interviews, it was found that pressure from families was the main challenge faced by health care providers. Three urgent tasks before the end-of-life care can become widely available in the future were identified from the interviews, including educating the public on death, extending government support, and creating better health care environment.ConclusionThe end-of-life care system of the future should involve health care institutions at all levels, with established mechanisms of collaboration between institutions. Care should be delivered to patients with various life-threatening diseases in both palliative and non-palliative care settings. But first, it is necessary to address the obstacles to the development of end-of-life care, which involve health care providers, patients and their families, and the health care system as a whole.
| S-EPMC6193297 | biostudies-literature
Project description:BackgroundFrequent users of healthcare services are often categorised as 'heavy-cost patients'. In the recent years, many jurisdictions have attempted to implement different public policies to optimise the use of health services by frequent users. However, throughout this process, little attention has been paid to their experience as patients.ObjectiveTo thematically synthesise qualitative studies that explore the experience of frequent users of primary care and emergency department services.DesignQualitative systematic review and thematic synthesis.SettingPrimary care and emergency department.ParticipantsFrequent users of primary care and emergency department services.MethodsA qualitative systematic review was conducted using three online databases (MEDLINE with full text, CINAHL with full text and PsycINFO). This search was combined to an extensive manual search of reference lists and related citations. A thematic synthesis was performed to develop descriptive themes and analytical constructs.Study selectionTwelve studies were included. All included studies met the following inclusion criteria: qualitative design; published in English; discussed frequent users' experiences from their own perspectives and users' experiences occurred in primary care and/or emergency departments.ResultsThe predominant aspects of frequent users' experiences were: (1) the experience of being ill and (2) the healthcare experience. The experience of being ill encompassed four central themes: physical limitations, mental suffering, impact on relationships and the role of self-management. The healthcare experience embraced the experience of accessing healthcare and the global experience of receiving care.ConclusionThis synthesis sheds light on potential changes to healthcare delivery in order to improve frequent users' experiences: individualised care plans or case management interventions to support self-management of symptoms and reduce psychological distress; and giving greater importance on the patient-providers relationship as a central facet of healthcare delivery. This synthesis also highlights future research directions that would benefit frequent users.
| S-EPMC7482492 | biostudies-literature
Project description:BackgroundThe increasing demand for childbirth care based on physiological principles has led official bodies to encourage health centers to provide evidence-based care aimed at promoting women's participation in informed decision-making and avoiding excessive medical intervention during childbirth. One of the goals is to reduce pain and find alternative measures to epidural anesthesia to enhance women's autonomy and well-being during childbirth. Currently, water immersion is used as a non-pharmacological method for pain relief. This review aimed to identify and synthesize evidence on women's and midwives' experiences, values, and preferences regarding water immersion during childbirth.MethodsA systematic review and thematic synthesis of qualitative evidence were conducted. Databases were searched and references were checked according to specific criteria. Studies that used qualitative data collection and analysis methods to examine the opinions of women or midwives in the hospital setting were included. Non-qualitative studies, mixed-methods studies that did not separately report qualitative results, and studies in languages other than English or Spanish were excluded. The Critical Appraisal Skills Program Qualitative Research Checklist was used to assess study quality, and results were synthesized using thematic synthesis.ResultsThirteen studies met the inclusion criteria and were included in this review. The qualitative studies yielded three key themes: 1) reasons identified by women and midwives for choosing a water birth, 2) benefits experienced in water births, and 3) barriers and facilitators of water immersion during childbirth.ConclusionsThe evidence from qualitative studies indicates that women report benefits associated with water birth. From the perspective of midwives, ensuring safe water births requires adequate resources, midwives training, and rigorous standardized protocols to ensure that all pregnant women can safely opt for water immersion during childbirth with satisfactory results.
| S-EPMC10226235 | biostudies-literature
Project description:BackgroundBetter understanding of patient and family member experiences of delirium and related distress during critical care is required to inform the development of targeted nonpharmacologic interventions.ObjectiveTo examine and synthesize qualitative data on patient and family member delirium experiences and relieving factors in the Intensive Care Unit (ICU).DesignWe conducted a systematic review and qualitative meta-synthesis. Eligible studies contained adult patient or family quotes about delirium during critical care, published in English in a peer-reviewed journal since 1980. Data sources included PubMed, Embase, CINAHL, PsycINFO, Web of Science, Cochrane and Clinicaltrials.gov.MethodsSystematic searches yielded 3238 identified articles, of which 14 reporting 13 studies were included. Two reviewers independently extracted data into a Microsoft Excel spreadsheet. Qualitative meta-synthesis was performed through line-by-line coding of relevant quotes, organization of codes into descriptive themes, and development of analytical themes. Five patients/family members with experience of ICU delirium contributed to the thematic analysis.ResultsQualitative meta-synthesis resulted in four major themes and two sub-themes. Key new patient and family-centric insights regarding delirium-related distress in the ICU included articulation of the distinct emotions experienced during and after delirium (for patients, predominantly fear, anger and shame); its 'whole-person' nature; and the value that patients and family members placed on clinicians' compassion, communication, and connectedness.ConclusionsDistinct difficult emotions and other forms of distress are experienced by patients and families during ICU delirium, during which patients and families highly value human kindness and empathy. Future studies should further explore and address the many facets of delirium-related distress during critical care using these insights and include patient-reported measures of the predominant difficult emotions.
| S-EPMC8440491 | biostudies-literature