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.
OBJECTIVE: The aim of this study is to report the benefits and burdens of palliative research participation on children, siblings, parents, clinicians, and researchers.
BACKGROUND: Pediatric palliative care requires research to mature the science and improve interventions. A tension exists between the desire to enhance palliative and end-of-life care for children and their families and the need to protect these potentially vulnerable populations from untoward burdens.
METHODS: Systematic review followed PRISMA guidelines with prepared protocol registered as PROSPERO #CRD42018087304. MEDLINE, CINAHL, PsycINFO, EMBASE, Scopus, and The Cochrane Library were searched (2000-2017). English-language studies depicting the benefits or burdens of palliative care or end-of-life research participation on either pediatric patients and/or their family members, clinicians, or study teams were eligible for inclusion. Study quality was appraised using the Mixed Methods Appraisal Tool (MMAT).
RESULTS: Twenty-four studies met final inclusion criteria. The benefit or burden of palliative care research participation was reported for the child in 6 papers; siblings in 2; parents in 19; clinicians in 3; and researchers in 5 papers. Benefits were more heavily emphasized by patients and family members, whereas burdens were more prominently emphasized by researchers and clinicians. No paper utilized a validated benefit/burden scale.
DISCUSSION: The lack of published exploration into the benefits and burdens of those asked to take part in pediatric palliative care research and those conducting the research is striking. There is a need for implementation of a validated benefit/burden instrument or interview measure as part of pediatric palliative and end-of-life research design and reporting.
BACKGROUND: Young adults represent a minority in research; they are often considered too young or too old for participation. There is sparse information, especially in bereavement research, regarding how this age group perceives research participation and what they consider beneficial or harmful.
AIM: To explore how parentally bereaved and nonbereaved young adults perceive research participation.
DESIGN: Qualitative analysis of free-text comments collected in a Swedish nation-wide survey.
SETTING/PARTICIPANTS: Parentally cancer-bereaved and nonbereaved young adults between 18 and 25 years old living in Sweden.
RESULTS: Five categories were identified from the free-text comments, three among the cancer-bereaved: (1) therapeutic to remember the deceased, (2) valuable to help others and improve care, and (3) short-term distressful-long-term beneficial, and two among the nonbereaved: (1) increased reflection and awareness about life, and (2) an opportunity to help others.
CONCLUSIONS: It is important to invite young adults to participate in bereavement research. The results suggest that potential harm is minimal and that participating in bereavement research can have a beneficial effect on young adults.
Introduction: Primary care has a central role in palliative and end of life care: 45.6% of deaths in England and Wales occur under the care of primary care teams at home or in care homes. The Community Care Pathways at the End of Life (CAPE) study investigated primary care provided for patients in the final 6 months of life. This paper highlights the opportunities and challenges associated with primary palliative care research in the UK, describing the methodological, ethical, logistical and gatekeeping challenges encountered in the CAPE study and how these were addressed.
The study methods: Using a mixed-methods approach, quantitative data were extracted from the general practitioner (GP) and district nurse (DN) records of 400 recently deceased patients in 20 GP practices in the East of England. Focus groups were conducted with some GPs and DNs, and individual interviews held with bereaved carers and other GPs and DNs.
The challenges addressed Considerable difficulties were encountered with ethical permissions, with GP, DN and bereaved carer recruitment and both quantitative and qualitative data collection. These were overcome with flexibility of approach, perseverance of the research team and strong user group support. This enabled completion of the study which generated a unique primary palliative care data set.
La France a été pionnière en matière de législation dans le domaine de la bioéthique, de la loi de 1988 à sa dernière révision en 2011. La loi relative à la bioéthique pose un ensemble de règles juridiques gouvernant l'ensemble des pratiques médicales et/ou de recherche, dont l'objet est le corps humain et l'embryon en tant que ressource ou entité biologique. Dans le cadre de la révision de la dernière loi de 2011, le comité consultatif national d'éthique pour les sciences de la vie et de la santé (CCNE) a piloté un débat organisé sous la forme d' "États généraux" en s'appuyant sur la mobilisation des Espaces de réflexion éthique régionaux, un site web dédié, des auditions d'associations, d'institutions et de représentants de courants de pensée, ainsi que de sociétés savantes et de Comités d'éthique nationaux. Il a également souhaité qu'un Comité citoyen apporte une analyse critique sur le déroulement du débat public et qu'un médiateur réponde aux critiques sur son organisation. Le CCNE, qui a lancé officiellement les États généraux le18 janvier 2018, a mis fin à la consultation le 30 avril 2018 avec cependant la tenue de quelques auditions et d'une réunion du Comité citoyen, jusqu'au 24 mai. L'ensemble des contributions a été analysé par le CCNE et rassemblé dans le présent rapport. Sont présentés, la méthode et la démarche, les sujets discutés et les propositions faites autour des neuf thématiques et les enseignements à tirer du processus de débat public mis en oeuvre.
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Les soins palliatifs représentent un domaine en émergence comportant une grande pertinence sanitaire et sociale. La création du RQSPAL permettra de structurer et d'accroître la capacité de recherche en SPFV, d'atteindre les objectifs de diffusion et de transfert des connaissances, et de jouer un rôle de vigie scientifique en SPFV utile pour les décideurs. Le RQSPAL aura des retombées sociétales importantes, notamment grâce à l'augmentation de la cohésion et de la complémentarité des actions, en renforçant la capacité de recherche et en améliorant l'intégration des connaissances dans les pratiques et les politiques.
Funeral services sector personnel are at risk of contracting infectious diseases and have poor adherence to universal safety precautions. More work needs to be done to understand this industry; however, there is limited information on conducting research within this sector. This manuscript draws on experiences and observations of funeral services study describing lessons learned in the field, particularly emphasizing attempts to engage funeral homes in research and the impact of this work on the research team. Factors to be considered before researching in this sector: obtaining approvals, identification as researchers, and in-house emotional support for the research team.
BACKGROUND: The state of palliative care research is closely linked to the development of palliative care services in a country or region.
OBJECTIVE: To systematically review the current state of palliative care research in the Asia Pacific region and analyze its relationship with the performance of each country in the region on the Economist Intelligence Unit's 2015 Quality of Death Index.
DESIGN: Systematic review and bibliographic analysis in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analysis Protocol 2015 (PRISMA-P).
DATA SOURCES: The PubMed/MEDLINE, EMBASE, SCOPUS, CINAHL, and PsychiNFO databases were searched on February 4, 2018.
RESULTS: One thousand six hundred sixty-seven articles were reviewed. Eighteen out of 32 countries in the region published research. Around 74.15% (1236) of the articles were produced by high-income countries. Research output (articles per 1 m population) was closely linked to country performance on the Economist Intelligence Unit's 2015 Quality of Death Index (adjusted R2= 0.85). Palliative care research in the region is overwhelmingly focused on cancer (80.13% of articles reviewed). The most common themes of research were â€œpalliative care service (24.45%)â€ and â€œclinicalâ€ (15.38%).
CONCLUSIONS: Palliative care research in the region is growing but remains largely centered on the high-income countries, with many low- and middle-income countries having little published research output. Much work is required to drive research in these countries to generate the evidence required for the development of palliative care services. The emphasis on cancer in research also indicates that the needs of patients suffering from noncancer-related diseases may be neglected.
BACKGROUND: Palliative care, as a relatively young field within medicine, has increasingly used original research to validate and standardize its practice. In particular, palliative care has been incorporated into oncology to better address end-of-life decisions and care. The goal of this study is to identify seminal studies in the field of palliative oncology while more broadly characterizing the trends across the literature.
METHODS: The publication databases Scopus and Web of Science were queried using predefined search terms to identify palliative oncology studies published between 1995 and 2016. The 100 most-cited articles from the time periods 1995-2005 and 2006-2016 were selected and analysed for publication data and study content.
RESULTS: Palliative oncology studies were found to primarily examine patients with multiple rather than single cancer types and rarely were randomized controlled trials. Early research topics of pain, symptoms, and survival studies have been replaced by the issues of access to care, healthcare utilization, and religion and spirituality.
CONCLUSIONS: By identifying and analyzing notable studies in palliative oncology, we found areas of research that are commonly investigated or overlooked and identified model studies that highlight the need for additional disease-specific randomized control trials to provide high quality clinical evidence in the field.
BACKGROUND: Values used in economic evaluation are typically obtained from the general public, which is problematic when measures are to be used with people experiencing a life-course stage such as the end of life.
OBJECTIVE: To assess the feasibility of obtaining values for the ICECAP-Supportive Care Measure (SCM) from patients receiving advanced supportive care through a hospice.
METHODS: Participants completed eight best-worst scaling questions in a think-aloud interview to explain choices in different hypothetical end-of-life scenarios. Three independent raters identified errors in completion of the best-worst scaling task, and thematic analysis of associated qualitative data was undertaken to explore task difficulty and choices.
RESULTS: Twelve hospice patients were recruited. Most were able to complete the task and prioritise aspects of supportive care with either no difficulty (n=50%) or difficulty in just one of the eight scenarios (n=25%). Two patients (n=17%) were unable to comprehend the hypothetical nature of the task. The qualitative data confirmed there was good engagement with the task and identified the importance the respondents attached to maintaining dignity.
CONCLUSION: The findings suggest that people at the end of life will be able to complete a short, interviewer-administered, best-worst scaling task. To maximise engagement, it is recommended that the task is short and initiated with an example. Scenarios are best presented on show-cards in large print. A full evaluation of the ICECAP-SCM with those at the end of life is feasible.
BACKGROUND: In planning high-quality research in any aspect of care for children and young people with life-limiting conditions, it is important to prioritise resources in the most appropriate areas.
AIM: To map research priorities identified from existing research prioritisation exercises relevant to infants, children and young people with life-limiting conditions, in order to inform future research.
DESIGN:: We undertook a systematic scoping review to identify existing research prioritisation exercises; the protocol is publicly available on the project website.
DATA SOURCES: The bibliographic databases ASSIA, CINAHL, MEDLINE/MEDLINE In Process and Embase were searched from 2000. Relevant reference lists and websites were hand searched. Included were any consultations aimed at identifying research for the benefit of neonates, infants, children and/or young people (birth to age 25 years) with life-limiting, life-threatening or life-shortening conditions; their family, parents, carers; and/or the professional staff caring for them.
RESULTS: A total of 24 research prioritisation exercises met the inclusion criteria, from which 279 research questions or priority areas for health research were identified. The priorities were iteratively mapped onto an evolving framework, informed by World Health Organization classifications. This resulted in identification of 16 topic areas, 55 sub-topics and 12 sub-sub-topics.
CONCLUSION:: There are numerous similar and overlapping research prioritisation exercises related to children and young people with life-limiting conditions. By mapping existing research priorities in the context in which they were set, we highlight areas to focus research efforts on. Further priority setting is not required at this time unless devoted to ascertaining families' perspectives.
BACKGROUND: As understandings of the impacts of end-of-life experiences on parents' grief and bereavement increase, so too does the inclusion of bereaved parents into research studies exploring these experiences. However, designing and obtaining approval for these studies can be difficult, as guidance derived from bereaved parents' experiences of the research process are limited within the current literature.
METHODS: We aimed to explore bereaved parents' experiences of research participation in a larger grounded theory study exploring experiences of the death of a child in the paediatric intensive care unit. Data were obtained during follow-up phone calls made to 19 bereaved parents, five of whom provided data from their spouse, 1 week after their participation in the study. Participants were asked to reflect on their experiences of research participation, with a focus on recruitment methods, timing of research contact, and the location of their interview. Parents' responses were analysed using descriptive content analysis.
RESULTS: Our findings demonstrate that despite being emotionally difficult, parents' overall experiences of research participation were positive. Parents preferred to be contacted initially via a letter, with an opt in approach viewed most favourably. Most commonly, participants preferred that research contact occurred within 12-24 months after their child's death, with some suggesting contact after 6 months was also appropriate. Parents also preferred research interviews conducted in their own homes, though flexibility and parental choice was crucial.
CONCLUSIONS: Findings from this study offer further insight to researchers and research review committees, to help ensure that future studies are conducted in a way that best meets the unique needs of bereaved parents participating in research.
BACKGROUND: Little is known about research priorities in adult palliative care. Identifying research priorities for adult palliative care will help in increasing research quality and translation.
OBJECTIVE: The aim was to identify the views of health professionals' research priorities in adult palliative care that lead to development of a palliative care research agenda in Australia.
DESIGN: A modified three-round Delphi survey.
SETTING/SUBJECTS: Palliative care researchers and clinicians in Australia were invited to participate.
RESULTS: A total of 25 panelists completed round 1, 14 completed round 2, and 13 completed round 3. Round 1 resulted in 90 research priorities in 13 categories. Round 2 showed consensus agreement on 19/90 research priorities. Round 3 resulted in the top 10 research priorities of the 19 achieving consensus in round 2. Panelists agreed that research is needed on the transition to palliative care; improving communication about prognosis; increasing access to palliative care for indigenous communities, people who wish to remain at home, and people in aged care; addressing family caregivers' needs; promoting patients' and families' decision making; improving cross-cultural aspects of palliative care; determining the effects of assisted dying legislation; and improving bereavement care in rural, remote, and Aboriginal populations.
CONCLUSIONS: The expert panelists identified the top 10 research priorities for adult palliative care. These identified research priorities are the most urgent topics requiring attention to increase the quality of life of patients requiring palliative care and their family members.
BACKGROUND:: Effective palliative care requires a strong evidence base to advance clinical practice and policy-making. Calls for more collaborative and strategic approaches to research have resulted in the development of research networks at national and wider regional levels.
AIM:: The aim was to synthesize the learning arising from the activities of the Palliative Care Research Network from the island of Ireland, in order to identify the overarching messages from these activities. The ultimate aim is to promote the communication of these messages to practice.
DESIGN:: The study developed a systematic search process influenced by Preferred Reporting Items for Systematic Review and Meta-Analysis guidelines, with analysis of data adopting a qualitative critical interpretative synthesis approach using thematic synthesis.
PARTICIPANTS:: In total, 142 dissemination products were sourced from 22 associated projects, including peer-reviewed publications, conference presentations, reports, and web/social media posts.
RESULTS:: The synthesis of dissemination products identified 4 key themes relating to palliative care research and practice: (1) addressing the needs of patients while recognizing the caregiver role, (2) equal access to connected services, (3) general and specific needs in palliative care research, and (4) challenges in palliative care research.
CONCLUSIONS:: The key themes identified relate to challenges in both practice and research, highlighting the complexity of palliative care provision that aims to support both patients and carers, and research in this area. However, an important implication is the need for a broader approach to dissemination (beyond traditional academic activities) to ensure that research in palliative care is well placed to inform both practice and policy.
BACKGROUND: The U.S. National Institute of Allergies and Infectious Diseases (NIAID) and the National Institute of Mental Health (NIMH) have a new research priority: inclusion of terminally ill persons living with HIV (PLWHIV) in HIV cure-related research. For example, the Last Gift is a clinical research study at the University of California San Diego (UCSD) for PLWHIV who have a terminal illness, with a prognosis of less than 6 months.
DISCUSSION: As end-of-life (EOL) HIV cure research is relatively new, the scientific community has a timely opportunity to examine the related ethical challenges. Following an extensive review of the EOL and HIV cure research ethics literature, combined with deliberation from various stakeholders (biomedical researchers, PLWHIV, bioethicists, and socio-behavioral scientists) and our experience with the Last Gift study to date, we outline considerations to ensure that such research with terminally ill PLWHIV remains ethical, focusing on five topics: 1) protecting autonomy through informed consent, 2) avoiding exploitation and fostering altruism, 3) maintaining a favorable benefits/risks balance, 4) safeguarding against vulnerability through patient-participant centeredness, and 5) ensuring the acceptance of next-of-kin/loved ones and community stakeholders.
CONCLUSION: EOL HIV cure-related research can be performed ethically and effectively by anticipating key issues that may arise. While not unique to the fields of EOL or HIV cure-related research, the considerations highlighted can help us support a new research approach. We must honor the lives of PLWHIV whose involvement in research can provide the knowledge needed to achieve the dream of making HIV infection curable.
BACKGROUND: Globally the state of palliative care research remains uncertain. Questions remain regarding impact, funding, and research priorities. Building upon previous research, this review examines palliative care research in Ireland and contributes to a wider international debate on the state of palliative care research.
METHODS: A systematic mapping review was undertaken. Eight bibliographic databases and thesis repositories were searched from May 2012 to April 2017. Palliative care related search terms were combined with "Ireland" or "Irish" to increase search sensitivity. Inclusion criteria were applied by two independent reviewers. Descriptive analysis was completed using IBM SPSS v23. Thematic analysis was undertaken using a data-driven approach to develop new themes.
RESULTS: In total, 808 studies were screened and 151 papers from 117 studies were included for review. The top two areas of research focus included: (1) specific groups, services, and settings (n = 70); and (2) identification, communication and education (n = 37). A diverse variety of research methods were used including mixed methods (25%), surveys (22%), interviews (20%), and reviews (17%). One randomised control trial was conducted. The predominance of research papers focused solely on health care professionals (n = 35%), and the community setting was the most frequent location for data collection (41%). The majority of data was collected across the two jurisdictions of the Republic of Ireland (ROI) and Northern Ireland (NI) (37%), and 23% of studies included data outside of Ireland and the UK. The most frequent sources of funding were: consortiums (n = 40); government (n = 24); and philanthropic bodies (n = 20). Forty percent (n = 60) of papers were either unfunded or did not acknowledge a funder.
CONCLUSIONS: There is a continued increase in palliative care research in Ireland with increased collaborative working nationally and internationally. The quantity and impact of research has increased from the previous review, which can be attributed to significant investment in research funding and collaborative networks. However, research gaps continue to exist including out of hours' care, physical and psychological symptom control, intervention studies, and the patient and family perspective. Areas for attention include the need to ensure knowledge exchange and demonstrate impact of the research on patient and family carer outcomes.
The status of economic research in palliative care is evaluated. Significant limitations are observed in research to date. Recommendations are made for broadening the scope of economic enquiry in palliative care.
Children in foster care are considered a “vulnerable population” in clinical care and research, with good reason. These children face multiple medical, psychological, and social risks that obligate the child welfare and healthcare systems to protect them from further harms. An unintended consequence of the “vulnerable population” designation for children in foster care is that it may impose barriers on tracking and studying their health that creates gaps in knowledge that are key to their receipt of medical care and good outcomes. These gaps in knowledge have implications for justice, beneficence, and maleficence and serve to undermine “protection” of this population. Here we review the challenges of research regarding children in foster care, particularly medically complex children, and offer specific recommendations to include children in foster care in medical research.
INTRODUCTION: Animal models have been vital for scientific discovery but have limitations, especially in infectious disease research. It is essential to develop a means to study these diseases in human models. We hypothesized that altruistic people would willingly participate in research near the end-of-life (EOL), for the benefit of science and to provide one last gift to society.
METHODOLOGY: Two surveys were administered to 377 self-reported HIV-negative and 96 HIV-positive individuals. Hypothetical questions assessed their willingness to participate in altruistic research in the last 6 months of life, which might result in a shortened lifespan or physical discomforts. The self-reported HIV-negative group was also asked about willingness to be exposed to infectious pathogens for the sake of research.
RESULTS: Almost all responders expressed willingness to participate in research at the EOL, regardless of HIV-status. The majority of participants were willing to endure physical discomfort for the sake of research. 'Blood draws' was identified as the most tolerable physical discomfort (>70% in both groups). In both groups, >60% were willing to shorten their lifespans for the sake of research. A third of the self-reported HIV-negative group expressed willingness to be exposed to at least one infectious agent to participate in EOL research.
CONCLUSIONS: Our exploratory study demonstrates that people would welcome the opportunity to participate in altruistic research near the EOL. Such research could greatly impact the way infectious disease research is conducted. This study is limited however by its hypothetical nature. Further research is necessary to confirm this interest in those with terminal illness before any further clinical research effort at the EOL can be performed.