Dataset Information

Palliative and end of life care in prisons: a mixed-methods rapid review of the literature from 2014-2018.

ABSTRACT: OBJECTIVES:To explore current practice in relation to palliative and end of life care in prisons, and to make recommendations for its future provision. DESIGN:A rapid literature review of studies using qualitative, quantitative and mixed-methods, with a narrative synthesis of results. DATA SOURCES:Six databases searched between January 2014 to December 2018: ASSIA, CINAHL, Embase, MEDLINE, National Criminal Justice Reference Service Abstracts and Scopus. ELIGIBILITY CRITERIA:Primary research articles reporting qualitative or quantitative findings about palliative and end of life care in prisons, published in peer-reviewed, English language journals between January 2014 to December 2018. PARTICIPANTS:Prisoners, prisoners' families, prison healthcare staff and other prison staff. DATA EXTRACTION/SYNTHESIS:Data extracted included: citation, design, aim, setting, sample/population, methods and key findings. Data were analysed thematically then subject to a narrative synthesis in order to answer the research questions. QUALITY APPRAISAL:Two researchers independently appraised articles using the Qualsyst tool, by Kmet et al (2004). Aggregate summary quality scores are included with findings. Articles were not excluded based on quality appraisal. RESULTS:23 articles were included (16 qualitative, 6 quantitative, 1 mixed methods). Top three findings (by prevalence) were: fostering relationships with people both inside and outside of prison is important to prisoners with palliative and end of life care needs, inmate hospice volunteers are able to build and maintain close relationships with the prisoners they care for and the conflicting priorities of care and custody can have a negative impact on the delivery of palliative and end of life care in prisons. CONCLUSIONS:The key findings are: relationships are important to prisoners at the end of life, inmate hospice volunteers can build close bonds with the prisoners in their care and the prison environment and regime conflicts with best practices in palliative and end of life care. Directions for future research are also identified. PROSPERO REGISTRATION NUMBER:PROSPERO ID: CRD42019118737. Registered January 2019.

SUBMITTER: McParland C

PROVIDER: S-EPMC7008433 | biostudies-literature | 2019 Dec

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Palliative and end of life care in prisons: a mixed-methods rapid review of the literature from 2014-2018.

McParland Chris C Johnston Bridget Margaret BM

BMJ open 20191223 12

<h4>Objectives</h4>To explore current practice in relation to palliative and end of life care in prisons, and to make recommendations for its future provision.<h4>Design</h4>A rapid literature review of studies using qualitative, quantitative and mixed-methods, with a narrative synthesis of results.<h4>Data sources</h4>Six databases searched between January 2014 to December 2018: ASSIA, CINAHL, Embase, MEDLINE, National Criminal Justice Reference Service Abstracts and Scopus.<h4>Eligibility crit ...[more]

PMID: 31874895

Similar Datasets

Project description:BACKGROUND:Nearly 20% of colorectal cancer (CRC) patients present with potentially incurable (Stage IV) disease, yet their physicians do not integrate cancer treatment with palliative care. Compared with patients treated by primary providers, surgical patients with terminal diseases are significantly less likely to receive palliative or end-of-life care. OBJECTIVE:To describe surgeon perspectives on palliative and end-of-life care for patients with Stage IV CRCs. DESIGN:This is a convergent mixed methods study using a validated survey instrument from the Critical Care Peer Workgroup of the Robert Wood Johnson Foundation's Promoting Excellence in End-of-Life Care Project with additional qualitative questions. SETTINGS:Participants were all current, nonretired members of the American Society of Colon and Rectal Surgeons. MAIN OUTCOME MEASURES:Surgeon-perceived barriers to palliative and end-of-life care for patients with Stage IV CRCs were identified. RESULTS:Among 131 Internet survey respondents (response rate 16.5%), 76.1% reported no formal education in palliative care, and specifically noted inadequate training in techniques to forgo life-sustaining measures (37.9%) and communication (42.7%). Over half (61.8%) of surgeons cited unrealistic expectations among patients and families as a barrier to care, which also limited discussion of palliation. At the system level, absence of documentation, appropriate processes, and culture hindered the initiation of palliative care. Thematic analysis of open-ended questions confirmed and extended these findings through the following major barriers to palliative and end-of-life care: (1) surgeon knowledge and training; (2) communication challenges; (3) difficulty with prognostication; (4) patient and family factors encompassing unrealistic expectations and discordant preferences; and (5) systemic issues including culture and lack of documentation and appropriate resources. LIMITATIONS:Generalizability is limited by the small sample size inherent to Internet surveys, which may contribute to selection bias. CONCLUSIONS:Surgeons valued palliative and end-of-life care but reported multilevel barriers to its provision. These data will inform strategies to reduce these perceived barriers.

Project description:Introduction: Improving end-of-life (EOL) care is a priority worldwide as this population experiences poor outcomes and accounts disproportionately for costs. In clinical practice, physician judgement is the core method of identifying EOL care needs but has important limitations. Machine learning (ML) is a subset of artificial intelligence advancing capacity to identify patterns and make predictions using large datasets. ML approaches have the potential to improve clinical decision-making and policy design, but there has been no systematic assembly of current evidence. Methods: We conducted a rapid review, searching systematically seven databases from inception to December 31st, 2018: EMBASE, MEDLINE, Cochrane Library, PsycINFO, WOS, SCOPUS and ECONLIT. We included peer-reviewed studies that used ML approaches on routine data to improve palliative and EOL care for adults. Our specified outcomes were survival, quality of life (QoL), place of death, costs, and receipt of high-intensity treatment near end of life. We did not search grey literature and excluded material that was not a peer-reviewed article. Results: The database search identified 426 citations. We discarded 162 duplicates and screened 264 unique title/abstracts, of which 22 were forwarded for full text review. Three papers were included, 18 papers were excluded and one full text was sought but unobtainable. One paper predicted six-month mortality, one paper predicted 12-month mortality and one paper cross-referenced predicted 12-month mortality with healthcare spending. ML-informed models outperformed logistic regression in predicting mortality but poor prognosis is a weak driver of costs. Models using only routine administrative data had limited benefit from ML methods. Conclusion: While ML can in principle help to identify those at risk of adverse outcomes and inappropriate treatment near EOL, applications to policy and practice are formative. Future research must not only expand scope to other outcomes and longer timeframes, but also engage with individual preferences and ethical challenges.

Project description:IntroductionLittle consideration has been given to how the provision of palliative and end-of-life care in care homes was affected by COVID-19. The aims of this study were to: (i) investigate the response of UK care homes in meeting the rapidly increasing need for palliative and end-of-life care during the COVID-19 pandemic and (ii) propose policy recommendations for strengthening the provision of palliative and end-of-life care within care homes.Materials and methodsA mixed methods observational study was conducted, which incorporated (i) an online cross-sectional survey of UK care homes and (ii) qualitative interviews with care home practitioners. Participants for the survey were recruited between April and September 2021. Survey participants indicating availability to participate in an interview were recruited using a purposive sampling approach between June and October 2021. Data were integrated through analytic triangulation in which we sought areas of convergence, divergence, and complementarity.ResultsThere were 107 responses to the survey and 27 interviews. We found that (i) relationship-centered care is crucial to high-quality palliative and end-of-life care within care homes, but this was disrupted during the pandemic. (ii) Care homes' ability to maintain high-quality relationship-centered care required key "pillars" being in place: integration with external healthcare systems, digital inclusion, and a supported workforce. Inequities within the care home sector meant that in some services these pillars were compromised, and relationship-centered care suffered. (iii) The provision of relationship-centered care was undermined by care home staff feeling that their efforts and expertise in delivering palliative and end-of-life care often went unrecognized/undervalued.ConclusionRelationship-centered care is a key component of high-quality palliative and end-of-life care in care homes, but this was disrupted during the COVID-19 pandemic. We identify key policy priorities to equip care homes with the resources, capacity, and expertise needed to deliver palliative and end-of-life care: (i) integration within health and social care systems, (ii) digital inclusivity, (iii) workforce development, (iv) support for care home managers, and (v) addressing (dis)parities of esteem. These policy recommendations inform, extend, and align with policies and initiatives within the UK and internationally.

Project description:ObjectivesTo apply and evaluate dementia-friendly community (DFC) principles in prisons.DesignA pilot study and process evaluation using mixed methods, with a 1-year follow-up evaluation period.SettingTwo male prisons: a category C sex offender prison (prison A) and a local prison (prison B).Participants68 participants-50 prisoners, 18 staff.InterventionThe delivery of dementia information sessions, and the formulation and implementation of dementia-friendly prison action plans.MeasuresStudy-specific questionnaires; Alzheimer's Society DFC criteria; semi-structured interview and focus group schedules.ResultsBoth prisons hosted dementia information sessions which resulted in statistically significant (p>0.05) increases in attendees' dementia knowledge, sustained across the follow-up period. Only prison A formulated and implemented a dementia action plan, although a prison B prisoner dedicated the prisoner magazine to dementia, post-information session. Prison A participants reported some progress on awareness raising, environmental change and support to prisoners with dementia in maintaining independence. The meeting of other dementia-friendly aims was less apparent. Numbers of older prisoners, and those diagnosed with dementia, appeared to have the greatest impact on engagement with DFC principles, as did the existence of specialist wings for older prisoners or those with additional care needs. Other barriers and facilitators included aspects of the prison institution and environment, staff teams, prisoners, prison culture and external factors.ConclusionsDFC principles appear to be acceptable to prisons with some promising progress and results found. However, a lack of government funding and strategy to focus action around the escalating numbers of older prisoners and those living with dementia appears to contribute to a context where interventions targeted at this highly vulnerable group can be deprioritised. A more robust evaluation of this intervention on a larger scale over a longer period of time would be useful to assess its utility further.

Project description:ObjectiveTo identify and synthesise existing literature exploring the impact of relational and informational continuity of care on preferred place of death, hospital admissions and satisfaction for palliative care patients in qualitative, quantitative and mixed methods literature.DesignA mixed methods rapid review.MethodsPUBMED, PsychINFO, CINAHL were searched from June 2008 to June 2018 in order to identify original peer reviewed, primary qualitative, quantitative or mixed methods research exploring the impact of continuity of care for people receiving palliative care. Synthesis methods as outlined by the Cochrane Qualitative and Implementation Methods Group were applied to qualitative studies while meta-analyses for quantitative data were planned.OutcomesThe impact of interventions designed to promote continuity of care for people receiving palliative care on the following outcomes was explored: achieving preferred place of death, satisfaction with care and avoidable hospital admissions.Results18 eligible papers were identified (11 qualitative, 6 quantitative and 1 mixed methods papers). In all, 1951 patients and 190 family caregivers were recruited across included studies. Meta-analyses were not possible due to heterogeneity in outcome measures and tools used. Two studies described positive impact on facilitating preferred place of death. Four described a reduction in avoidable hospital admissions. No negative impacts of interventions designed to promote continuity were reported. Patient satisfaction was not assessed in quantitative studies. Participants described a significant impact on their experiences as a result of the lack of informational and relational continuity.ConclusionsThis rapid review highlights the impact that continuity of care can have on the experiences of patients receiving palliative care. The evidence for the impact of continuity on place of death and hospital admissions is limited. Methods for enhancing, and recording continuity should be considered in the design and development of future healthcare interventions to support people receiving palliative care.

Dataset Information

Palliative and end of life care in prisons: a mixed-methods rapid review of the literature from 2014-2018.

Publications

Palliative and end of life care in prisons: a mixed-methods rapid review of the literature from 2014-2018.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets