scholarly journals Views of Patients With Advanced Disease and Their Relatives on Participation in Palliative Care Research

2020 ◽  
Author(s):  
Karolina Vlckova ◽  
Kristyna Polakova ◽  
Anna Tuckova ◽  
Adam Houska ◽  
Martin Loucka
Keyword(s):  
Palliative Care ◽  
Advanced Disease ◽  
Longitudinal Design ◽  
Research Participation ◽  
Structured Interviews ◽  
Cross Sectional ◽  
The Czech Republic ◽  
Care Research ◽  
Support Research ◽  
Significant Factors

Abstract Background: Patients with advanced disease may not be invited to participate in research based on the assumption that participation would be too burdensome for them. The aim of this study was to explore how patients with advanced disease and their relatives evaluate their experience with research participation.Methods: This study used data from two parts of a larger project. The first dataset was a cross-sectional questionnaire study focused on priorities at the end of life. The second dataset used longitudinal design with structured interviews on prognostic awareness. In both studies, participants evaluated their experience on a 5-point Likert scale and specified their motivation in an open-ended question.Setting/participants: Data were collected in 6 hospitals in the Czech Republic with patients with advanced disease and life expectancy less than 1 year and their relatives. Data were analysed using non-parametric tests and thematic analysis. Results: First dataset consisted of 167 patients and 102 relatives, and second dataset consisted of 135 patients and 92 relatives (in total 496 respondents). Results were similar in both datasets with half of the sample (53 %, 48 %) scoring neutral and over 30 % of sample identified their experience as interesting. The most significant factors associated with the evaluation were religiosity (p= 0.001) and the type of diagnosis (p= 0.04). Motivation for participation was to improve care, support research, express own opinion, opportunity to talk and trusting relationship. Conclusion: Patients with advanced disease and relatives do not mind participating in palliative care research and it can be even a positive experience for them.

scholarly journals Views of patients with advanced disease and their relatives on participation in palliative care research

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Karolina Vlckova ◽  
Kristyna Polakova ◽  
Anna Tuckova ◽  
Adam Houska ◽  
Martin Loucka
Keyword(s):  
Palliative Care ◽  
Advanced Disease ◽  
Longitudinal Design ◽  
Research Participation ◽  
Structured Interviews ◽  
Cross Sectional ◽  
The Czech Republic ◽  
Care Research ◽  
Support Research ◽  
Significant Factors

Abstract Background Patients with advanced disease may not be invited to participate in research based on the assumption that participation would be too burdensome for them. The aim of this study was to explore how patients with advanced disease and their relatives evaluate their experience with research participation. Method This study used data from two parts of a larger project. The first dataset was a cross-sectional questionnaire study focused on priorities at the end of life. The second dataset used a longitudinal design with structured interviews on prognostic awareness. In both studies, participants evaluated their experience on a 5-point Likert scale and specified their motivation in an open-ended question. Data were collected in 6 hospitals in the Czech Republic with patients with advanced disease and life expectancy less than 1 year and their relatives. Data were analysed using non-parametric tests and thematic analysis. Results First dataset consisted of 167 patients and 102 relatives, and second dataset consisted of 135 patients and 92 relatives (in total, 496 respondents). Results were similar in both datasets, with half of the sample (53%, 48%) scoring neutral, and over 30% of the sample identified their experience as interesting. The most significant factors associated with the evaluation were religiosity (p = 0.001) and the type of diagnosis (p = 0.04). Motivation for participation was to improve care, support research, express own opinion, opportunity to talk and trusting relationship. Conclusions Patients with advanced disease and relatives do not mind participating in palliative care research, and it can be even a positive experience for them.

Ethical issues in palliative care research

2015 ◽  
Author(s):  
David Casarett
Keyword(s):  
Palliative Care ◽  
Ethical Issues ◽  
Research Participation ◽  
Ethical Aspects ◽  
Interventional Study ◽  
Care Research ◽  
Qualitative And Quantitative ◽  
Decision Making Capacity ◽  
Potential Benefits ◽  
Study Designs

Recent growth in palliative care research has created a heterogeneous field that encompasses both qualitative and quantitative techniques, and descriptive as well as interventional study designs. Despite the valuable knowledge that has been produced by this research, and the promise of future important advances, its progress has been impeded by a persistent uncertainty about the ethics of these studies. For instance, there have been concerns raised about whether patients near the end of life should ever be asked to participate in research, although others have objected to this extreme position. Nevertheless, the combination of ethical and practical issues can create substantial barriers to palliative care research. This chapter discusses five ethical aspects of palliative care research that investigators and clinicians should consider in designing and conducting palliative care research. These include (1) the study’s potential benefits to future patients, (2) the study’s potential benefits to subjects, (3) the study’s risks to subjects, (4) subjects’ decision-making capacity, and (5) the voluntariness of subjects’ choices about research participation.

scholarly journals Variations in the cost of formal and informal health care for patients with advanced chronic disease and refractory breathlessness: A cross-sectional secondary analysis

2017 ◽  
Vol 31 (4) ◽  
pp. 369-377 ◽  
Author(s):  
Mendwas D Dzingina ◽  
Charles C Reilly ◽  
Claudia Bausewein ◽  
Caroline J Jolley ◽  
John Moxham ◽  
...  
Keyword(s):  
Palliative Care ◽  
Chronic Disease ◽  
Standard Deviation ◽  
Advanced Disease ◽  
Secondary Analysis ◽  
Formal Care ◽  
Cross Sectional ◽  
Informal Carers ◽  
The Cost ◽  
Advanced Chronic Disease

Background: Refractory breathlessness in advanced chronic disease leads to high levels of disability, anxiety and social isolation. These result in high health-resource use, although this is not quantified. Aims: To measure the cost of care for patients with advanced disease and refractory breathlessness and to identify factors associated with high costs. Design: A cross-sectional secondary analysis of data from a randomised controlled trial. Setting/participants: Patients with advanced chronic disease and refractory breathlessness recruited from three National Health Service hospitals and via general practitioners in South London. Results: Of 105 patients recruited, the mean cost of formal care was £3253 (standard deviation £3652) for 3 months. The largest contributions to formal-care cost were hospital admissions (>60%), and palliative care contributed <1%. When informal care was included, the total cost increased by >250% to £11,507 (standard deviation £9911). Increased patient disability resulting from breathlessness was associated with high cost (£629 per unit increase in disability score; p = 0.006). Increased breathlessness on exertion and the presence of an informal carer were also significantly associated with high cost. Patients with chronic obstructive pulmonary disease tended to have higher healthcare costs than other patients. Conclusion: Informal carers contribute significantly to the care of patients with advanced disease and refractory breathlessness. Disability resulting from breathlessness is an important clinical cost driver. It is important for policy makers to support and acknowledge the contributions of informal carers. Further research is required to assess the clinical- and cost-effectiveness of palliative care interventions in reducing disability resulting from breathlessness in this patient group.

Refractory suffering: The impact of team dynamics on the interdisciplinary palliative care team

2011 ◽  
Vol 9 (1) ◽  
pp. 55-62 ◽  
Author(s):  
Kate Swetenham ◽  
Meg Hegarty ◽  
Katrina Breaden ◽  
Carol Grbich
Keyword(s):  
Palliative Care ◽  
Interdisciplinary Team ◽  
Team Cohesion ◽  
Structured Interviews ◽  
Cross Sectional ◽  
Skill Sets ◽  
Team Members ◽  
Care Experience ◽  
The Individual ◽  
The Impact

AbstractObjective:This qualitative study aimed to describe the skill sets that experienced palliative care clinicians possess when managing refractory suffering.Method:Thirteen tape recorded semi-structured interviews and four online questionnaires were completed by participants with at least two years clinical palliative care experience. The research team undertook cross sectional thematic analysis of the transcribed interviews.Results:In the face of refractory suffering, team cohesion was identified as a key requirement to support the interdisciplinary team. However, team cohesion was found to be undermined by philosophical differences between team members, a paradigm shift concerning cure versus care and individual opinions regarding the chosen approach and levels of respect between the individual disciplines involved in the care of a person with a life limiting illness.Significance of results:The findings of this study highlight the precarious nature of the interdisciplinary team when significant challenges are faced. As a result of witnessing refractory suffering the division and fracturing of teams can easily occur; often team members are completely unaware of its cause. The findings of this study contribute to the limited literature on the nature of refractory suffering from the perspective of the interdisciplinary team.

Establishment and preliminary outcomes of a palliative care research network

2015 ◽  
Vol 14 (1) ◽  
pp. 52-59 ◽  
Author(s):  
Peter Hudson ◽  
Annette Street ◽  
Suzanne Graham ◽  
Sanchia Aranda ◽  
Margaret O'Connor ◽  
...  
Keyword(s):  
Palliative Care ◽  
Collaborative Research ◽  
Strong Support ◽  
The State ◽  
Research Network ◽  
Care Provision ◽  
Cross Sectional ◽  
Care Research ◽  
Preliminary Study ◽  
Collection Strategies

ABSTRACTObjective:The difficulties in conducting palliative care research have been widely acknowledged. In order to generate the evidence needed to underpin palliative care provision, collaborative research is considered essential. Prior to formalizing the development of a research network for the state of Victoria, Australia, a preliminary study was undertaken to ascertain interest and recommendations for the design of such a collaboration.Method:Three data-collection strategies were used: a cross-sectional questionnaire, interviews, and workshops. The questionnaire was completed by multidisciplinary palliative care specialists from across the state (n = 61); interviews were conducted with senior clinicians and academics (n = 21) followed by two stakeholder workshops (n = 29). The questionnaire was constructed specifically for this study, measuring involvement of and perceptions of palliative care research.Results:Both the interview and the questionnaire data demonstrated strong support for a palliative care research network and aided in establishing a research agenda. The stakeholder workshops assisted with strategies for the formation of the Palliative Care Research Network Victoria (PCRNV) and guided the development of the mission and strategic plan.Significance of results:The research and efforts to date to establish the PCRNV are encouraging and provide optimism for the evolution of palliative care research in Australia. The international implications are highlighted.

Ethical issues in palliative care research

2021 ◽  
pp. 1312-1317
Author(s):  
Tyler Tate ◽  
David Casarett
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
End Of Life ◽  
Ethical Issues ◽  
Research Participation ◽  
Ethical Aspects ◽  
Care Research ◽  
Qualitative And Quantitative ◽  
Decision Making Capacity ◽  
Potential Benefits

Recent growth in palliative care research has created a heterogeneous field that encompasses both qualitative and quantitative techniques, and descriptive as well as interventional studies. Despite the valuable knowledge that has been produced by this research, and the promise of future important advances, its progress has been impeded by a persistent uncertainty about the ethics of these studies. For instance, there have been concerns raised about whether patients near the end of life should ever be asked to participate in research, although others have objected to this extreme position. Nevertheless, the combination of ethical and practical issues can create substantial barriers to palliative care research. This chapter discusses five ethical aspects of palliative care research that investigators and clinicians should consider in designing and conducting palliative care research. These include (1) the study’s potential benefits to future patients, (2) the study’s potential benefits to subjects, (3) the study’s risks to subjects, (4) subjects’ decision-making capacity, and (5) the voluntariness of subjects’ choices about research participation.

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