Dataset Information

Opening the doors a crack wider: palliative care research data in the public domain.

ABSTRACT: This report builds further on OPCARE9, an EU 7th framework project aiming to identify knowledge gaps in care provision in the last days of life. This study began with curiosity about new ways of generating research questions to meet future challenges in palliative care (PC) and how to better engage disciplines not generally included in PC research. We here describe an innovative methodological approach to generating data; put data relevant for PC research in the public domain; and raise issues about open access in PC research. We aimed to compile research questions from different disciplines, based on raw data consisting of approximately 1000 descriptions of non-pharmacological caregiving activities (NPCAs), generated through previous research. 53 researchers from different fields were sent the full list of NPCAs and asked to generate research questions from their disciplinary perspective. Responses were received from 32 researchers from 9 countries, generating approximately 170 research topics, questions, reflections and ideas, from a wide variety of perspectives, which are presented here. Through these data, issues related to death and dying are addressed in several ways, in line with a new public health approach. By engaging a broader group of disciplines and facilitating availability of data in the public domain, we hope to stimulate more open dialogue about a wider variety of issues related to death and dying. We also introduce an innovative methodological approach to data generation, which resulted in a response rate at least equivalent to that in our Delphi survey of professionals in OPCARE9.

SUBMITTER: Lindqvist O

PROVIDER: S-EPMC4789691 | biostudies-literature | 2016 Mar

REPOSITORIES: biostudies-literature

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Opening the doors a crack wider: palliative care research data in the public domain.

Lindqvist Olav O Rasmussen Birgit H BH Fürst Carl Johan CJ Tishelman Carol C

BMJ supportive & palliative care 20160118 1

This report builds further on OPCARE9, an EU 7th framework project aiming to identify knowledge gaps in care provision in the last days of life. This study began with curiosity about new ways of generating research questions to meet future challenges in palliative care (PC) and how to better engage disciplines not generally included in PC research. We here describe an innovative methodological approach to generating data; put data relevant for PC research in the public domain; and raise issues a ...[more]

PMID: 26781808

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Project description:Plain English summary:Patient and public involvement (PPI) is increasingly recognised as important in research. Most PPI takes place face-to-face, but this can be difficult for people who are unwell or have caring responsibilities. As these challenges are particularly common in palliative care and rehabilitation research, we developed an online forum for PPI: www.csipublicinvolvement.co.uk. In this study, we explored how well the online forum worked, if it is a suitable method for PPI, and how PPI members and researchers reacted to using it. We used an existing theory about online interventions to help choose the 'right' questions to ask participants. We invited PPI members and researchers who had used the online forum to participate in focus groups, and identified the most important themes discussed. Within this study, PPI members have helped with the interview questions, analysis, and write up. Overall, four PPI members and five researchers participated in the focus groups. Participants felt the online forum worked well and had multiple benefits. From the discussions, we identified four key questions to consider when developing online methods for PPI: how does the forum work, how does it engage people, how does it empower people, and what is the impact? Participants suggested the forum could be improved by being more PPI and less researcher focused. We conclude that when developing online methods of PPI, a functioning forum is not enough: it also needs to be engaging and empowering to have an impact. Future work can use these four domains when developing their own online PPI methods. Abstract: Background:Patient and public involvement (PPI) in research is increasingly recognised as important. Most PPI activities take place face-to-face, yet this can be difficult for people with ill health or caring responsibilities, and may exclude people from hard-to-reach populations (e.g. living in vulnerable social circumstances and/or remote geographical locations). These challenges are particularly pertinent in palliative care and rehabilitation research where people often live with, or care for someone with, advanced illness. In response to this, we aimed to test the functionality, feasibility, and acceptability of an online forum for PPI for palliative care and rehabilitation research (www.csipublicinvolvement.co.uk). Methods:We conducted separate focus groups with PPI members and researchers who had used the online forum. Data collection was underpinned by DeLone and Mclean's model of information systems success. Focus groups were recorded, transcribed, and analysed using inductive thematic analysis. Dual coding by two authors ensured rigour, and attention was paid to divergent cases. Results:Four PPI members and five researchers participated in the focus groups (two PPI focus groups, one researcher focus group). The online forum was perceived as functional, feasible, and acceptable. Our analysis identified four key questions to consider when developing online methods for PPI: (1) how does the forum work, (2) how does it engage people, (3) how does it empower people, and (4) what is the impact? PPI members felt that the online forum was too researcher led, and needed to be more PPI focussed. Conclusions:When developing online methods of PPI, a functioning forum is not enough: it also needs to be engaging and empowering to have an impact. To optimise online involvement, future work should refer to these four domains and balance the needs of researchers and PPI members.

Project description:BackgroundPalliative Care is an approach that improves quality of life for patients and their families facing the problems associated with incurable life-threatening illness. In many countries, due to the rapidly ageing population, increasingly more people are suffering from serious chronic disease towards the end of life, making further development in palliative care a major public health challenge. The aim of this study was to develop the first targets for public health initiatives to improve palliative care in Germany.MethodsBased on the findings from pilot studies (qualitative interviews and surveys with different stakeholders in the health care system), we conducted a modified Delphi study with two rounds of questionnaires with experts in public health and palliative care. In the first round, the experts commented on the findings from the pilot studies. The answers were evaluated descriptively and with qualitative content analysis, resulting in the formulation of 25 targets. These were presented to the experts in the second Delphi round to assess each of them separately with regard to its importance and current implementation (7-point answer scales) and in relation to the other targets (defining the five most important of the 25 targets).ResultsSix most relevant targets for public health initiatives to improve palliative care in Germany were worked out: Supporting palliative care as a basic attitude for the care of people in the last phase of life; coordinating healthcare for people in the last phase of life; establishing cooperation among health professions and disciplines; establishing education in palliative care for all professional groups with contact to people in the last phase of life; reviewing the evidence of palliative care measures; offering support to family members who are caring for someone in the last phase of life.ConclusionsTo systematically develop palliative care, it makes sense to define fields of action with individual targets. For Germany, it can be recommended to give priority to the targets that were highlighted as the most relevant in this study. The next step will be to develop, implement and evaluate tangible measures to achieve these targets.

Project description:BackgroundThe goal of palliative care is to prevent and alleviate a suffering of incurable ill patients. A continuous intersectoral palliative care is important. The aim of this study is to analyse the continuity of palliative care, particularly the time gaps between hospital discharge and subsequent palliative care as well as the timing of the last palliative care before the patient's death.MethodsThe analysis was based on claims data from a large statutory health insurance. Patients who received their first palliative care in 2015 were included. The course of palliative care was followed for 12 months. Time intervals between discharge from hospital and first subsequent palliative care as well as between last palliative care and death were analysed. The continuity in palliative care was defined as an interval of less than 14 days between palliative care. Data were analysed using descriptive statistics and Chi-Square.ResultsIn 2015, 4177 patients with first palliative care were identified in the catchment area of the statutory health insurance. After general inpatient palliative care, 415 patients were transferred to subsequent palliative care, of these 67.7% (n = 281) received subsequent care within 14 days. After a stay in a palliative care ward, 124 patients received subsequent palliative care, of these 75.0% (n = 93) within 14 days. Altogether, 147 discharges did not receive subsequent palliative care. During the 12-months follow-up period, 2866 (68.7%) patients died, of these 78.7% (n = 2256) received palliative care within the last 2 weeks of life. Of these, 1223 patients received general ambulatory palliative care, 631 patients received specialised ambulatory palliative care, 313 patients received their last palliative care at a hospital and 89 patients received it in a hospice.ConclusionsThe majority of the palliative care patients received continuous palliative care. However, there are some patients who did not receive continuous palliative care. After inpatient palliative care, each patient should receive a discharge management for a continuation of palliative care. Readmissions of patients after discharge from inpatients palliative care can be an indication for a lack of support in the ambulatory health care setting and for an insufficient discharge management. Palliative care training and possibilities for palliative care consultations by specialists should strengthen the GPs in palliative care.

Project description:BACKGROUND:The implementation of early palliative care within a primary care setting is a recent academic topic. Recruiting General Practitioners (GPs) to participate in a palliative care study can be challenging. The pro-Spinoza project implemented a Care Pathway for Primary Palliative Care in 5 areas in Belgium. During this project, the feasibility of the recruitment of GPs and palliative care patients was evaluated. METHODS:The recruitment process was recorded in detail via an electronic logbook combining quantitative and qualitative data. Quantitative recordings included the contact types and the number of contacts with eligible GPs and were analysed descriptively. Qualitative recordings included field notes with feedback from the GPs and other stakeholders and were thematically analysed starting from the Grol and Wensing framework for professional behaviour change. RESULTS:Of 4065 eligible GPs working in 5 areas under research, 787 GPs (19%) were contacted individually, 398 GPs (9,8%) were contacted face-to-face and most of these 398 GPs showed high interest in the topic. 112 GPs (2,8%) signed the collaboration agreement, but finally only 65 GPs (1,6%) delivered at least a completed baseline-questionnaire. Despite the initial interest in participating, the unpredictable and busy daily workloads of the GPs, as well as inexperience with research protocols, impeded the ability of the GPs to fully engage in the study. This resulted in the high dropout rate. Participating GPs reported that they had underestimated the effort required to effectively participate in the project. CONCLUSIONS:Recruitment of GPs to palliative care research is challenging. Primary care is a vital service to engage in palliative care research however the practical limitations reduce the ability of the service to effectively engage in the research. More research is needed to determine how GPs might be better supported in research. TRIAL REGISTRATION:ClinicalTrials.gov, NCT02266069 , Registered 16th October 2014, retrospectively registered.

Project description:Nursing homes are important locations for palliative care. Through comprehensive geriatric assessments (CGAs), evaluations can be made of palliative care needs of nursing home residents. The interRAI Palliative Care instrument (interRAI PC) is a CGA that evaluates diverse palliative care needs of adults in all healthcare settings. The evaluation results in Client Assessment Protocols (CAPs: indications of problems that need addressing) and Scales (e.g. Palliative Index for Mortality (PIM)) which can be used to design, evaluate and adjust care plans. This study aims to examine the effect of using the interRAI PC on the quality of palliative care in nursing homes. Additionally, it aims to evaluate the feasibility and validity of the interRAI PC.This study covers phases 0, I and II of the Medical Research Council (MRC) framework for designing and evaluating complex interventions, with a longitudinal, quasi-experimental pretest-posttest design and with mixed methods of evaluation. In phase 0, a systematic literature search is conducted. In phase I, the interRAI PC is adapted for use in Belgium and implemented on the BelRAI-website and a practical training is developed. In phase II, the intervention is tested in fifteen nursing homes. Participating nursing homes fill out the interRAI PC during one year for all residents receiving palliative care. Using a pretest-posttest design with quasi-random assignment to the intervention or control group, the effect of the interRAI PC on the quality of palliative care is evaluated with the Palliative care Outcome Scale (POS). Psychometric analysis is conducted to evaluate the predictive validity of the PIM and the convergent validity of the CAP 'Mood' of the interRAI PC. Qualitative data regarding the usability and face validity of the instrument are collected through focus groups, interviews and field notes.This is the first study to evaluate the validity and effect of the interRAI PC in nursing homes, following a methodology based on the MRC framework. This approach improves the study design and implementation and will contribute to a higher generalizability of results. The final result will be a psychometrically evaluated CGA for nursing home residents receiving palliative care.ClinicalTrials.gov NCT02281032. Registered October 30th, 2014.

Dataset Information

Opening the doors a crack wider: palliative care research data in the public domain.

Publications

Opening the doors a crack wider: palliative care research data in the public domain.

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