Dataset Information

The experience of delirium in palliative care settings for patients, family, clinicians and volunteers: A qualitative systematic review and thematic synthesis.

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

ACCESS DATA

Similar Datasets

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.

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.

Project description:BACKGROUND:More 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. METHODS:This 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. RESULTS:Three 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. CONCLUSION:The 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.

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.

Project description:BackgroundNet survival rates of cancer are increasing worldwide, placing a strain on health service provision. There is a drive to transfer the care of cancer survivors-individuals living with and beyond cancer-to the community and encourage them to play an active role in their own care. Telehealth, the use of technology in remote exchange of data and communication between patients and health care professionals (HCPs), is an important contributor to this evolving model of care. Telehealth interventions are "complex," and understanding patient experiences of them is important in evaluating their impact. However, a wider view of patient experience is lacking as qualitative studies detailing cancer survivor engagement with telehealth are yet to be synthesized.ObjectiveTo systematically identify, appraise, and synthesize qualitative research evidence on the experiences of adult cancer survivors participating in telehealth interventions, to characterize the patient experience of telehealth interventions for this group.MethodsMedline (PubMed), PsychINFO, Cumulative Index for Nursing and Allied Health Professionals (CINAHL), Embase, and Cochrane Central Register of Controlled Trials were searched on August 14, 2015, and March 8, 2016, for English-language papers published between 2006 and 2016. Inclusion criteria were as follows: adult cancer survivors aged 18 years and over, cancer diagnosis, experience of participating in a telehealth intervention (defined as remote communication or remote monitoring with an HCP delivered by telephone, Internet, or hand-held or mobile technology), and reporting qualitative data including verbatim quotes. An adapted Critical Appraisal Skill Programme (CASP) checklist for qualitative research was used to assess paper quality. The results section of each included article was coded line by line, and all papers underwent inductive analysis, involving comparison, reexamination, and grouping of codes to develop descriptive themes. Analytical themes were developed through an iterative process of reflection on, and interpretation of, the descriptive themes within and across studies.ResultsAcross the 22 included papers, 3 analytical themes emerged, each with 3 descriptive subthemes: (1) influence of telehealth on the disrupted lives of cancer survivors (convenience, independence, and burden); (2) personalized care across physical distance (time, space, and the human factor); and (3) remote reassurance-a safety net of health care professional connection (active connection, passive connection, and slipping through the net). Telehealth interventions represent a convenient approach, which can potentially minimize treatment burden and disruption to cancer survivors' lives. Telehealth interventions can facilitate an experience of personalized care and reassurance for those living with and beyond cancer; however, it is important to consider individual factors when tailoring interventions to ensure engagement promotes benefit rather than burden.ConclusionsTelehealth interventions can provide cancer survivors with independence and reassurance. Future telehealth interventions need to be developed iteratively in collaboration with a broad range of cancer survivors to maximize engagement and benefit.

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.

Project description:BACKGROUND:There is little information about how healthcare professionals feel about providing palliative care for patients with a substance use disorder (SUD). Therefore, this study aims to explore: 1) the problems and needs experienced by healthcare professionals, volunteers and experts-by-experience (HCP/VE) during their work with patients with SUD in a palliative care trajectory and; 2) to make suggestions for improvements using the quality of care model by Donabedian (Structure, Process, Outcome). METHODS:A qualitative study was conducted, consisting of six focus group interviews which consisted of HCP/VE working with patients with SUD in a palliative care phase. At the end of the focus group interviews, participants structured and summarized their experiences within a Strengths, Weaknesses, Opportunities and Threats (SWOT) framework. Interview transcripts (other than the SWOT) were analysed by the researchers following procedures from the Grounded Theory Approach ('Grounded Theory Lite'). SWOT-findings were not subjected to in-depth analysis. RESULTS:HCP/VE stated that within the Structure of care, care networks are fragmented and HCP/VE often lack knowledge about patients' multiplicity of problems and the time to unravel these. Communication with this patient group appears limited. The actual care-giving Process requires HCP/VE a lot of creativity and time spent seeking for cooperation with other caregivers and appropriate care settings. The latter is often hindered by stigma. Since no formalized knowledge is available, care-delivery is often exclusively experience-based. Pain-medication is often ineffective due to active substance use. Finally, several Outcomes were brought forward: Firstly, a palliative care phase is often identified only at a late stage. Secondly, education and a (mobile) team of expertise are desired. Thirdly, care for the caregivers themselves is often de-prioritized. CONCLUSIONS:Better integration and collaboration between the different professionals with extensive experience in addiction, palliative and general curative care is imperative to assure good palliative care for patients with SUD. Currently, the resources for this care appear to be insufficient. Development of an educational program and social mapping may be the first steps in improving palliative care for patients with severe SUD.