Adequate interprofessional collaboration is essential to provide high quality palliative dementia care across different settings. Within interprofessional collaboration, nurses are the frontline healthcare professionals (HCPs), who interact closely with people with dementia, their loved ones, and other HCPs. A survey was conducted to explore the needs of nurses regarding interprofessional collaboration in home care (HC) organisations, nursing homes (NHs) and during NH admissions. The survey identified the perceived quality of and preferred needs regarding interprofessional collaboration. In total, 384 participants (53.9% home care nurses) completed the survey. The most frequently reported collaboration needs in HC organisations and NH were optimal communication content e.g. information transfer and short communication lines (being able to easily contact other disciplines), and coordination e.g. one contact person, and clear task division and responsibilities). During NH admissions, it was important to create transparency about agreements concerning end-of-life wishes, optimize nurse-to-nurse handover during NH admissions (through performing visits prior to admissions, and receiving practical information on how to guide relatives), and improve coordination (e.g. one contact person). In conclusion, the key collaboration needs were organising central coordination, establishing optimal communication, and creating transparency on end-of-life care agreements.
BACKGROUND: The attention of healthcare professionals is directed mainly towards the recipients of care and often insufficiently towards family carers. However, an effective collaboration between professionals and family carers is vital to provide quality palliative and end-of-life care. Such collaboration is under-studied in a palliative care context.
AIM: This study aimed to investigate how family carers of people who live at home with a life-limiting chronic illness experience and perceive collaboration with different healthcare professionals in the last phase of life.
DESIGN: Face-to-face semi-structured interviews were conducted with the primary family carers of people with a life-limiting chronic illness. Interpretative phenomenological analysis was used to analyse the data.
SETTING/PARTICIPANTS: A heterogeneous sample of 30 family carers of people with cancer, heart failure or dementia was recruited through a variety of care providers and services, in order to reflect the heterogeneity of caregiving in serious illness.
RESULTS: Five main themes emerged from interpretative phenomenological analysis that describe the quality of the collaboration between family carers and professionals: respecting family carers both as someone with care needs and as a member of the care team; the continuous availability and accessibility of healthcare professionals; the provision of information and communication including family carer issues; the coordination of care between all parties and contextual factors. The dominant experience by family carers was one of missed opportunities across these themes.
CONCLUSIONS: This qualitative study about the experiences and perceptions of family carers of people with a chronic life-limiting illness living at home regarding the collaboration with different healthcare providers in the last phase life, showed that family carers experience a lot of possibilities, but perceive missed opportunities as well, for healthcare professionals to effectively collaborate with them for palliative care.
OBJECTIVE: Although stakeholders' participation in healthcare is increasingly recommended, bereaved parents are often excluded for perceived potential risks to them. The objective of this study is to describe the ongoing involvement and the perspectives of bereaved parents engaged in different types of activities in Neonatal Intensive Care Units and providers who work with them.
DESIGN/METHODS: Mixed methods convergent analysis.
SETTING: Canadian paediatric tertiary care university hospital.
PARTICIPANTS: All bereaved members of the resource parents group (n=8) and most providers who work with them (n=16) answered a satisfaction/needs questionnaires.
RESULTS: Since 2011, eight bereaved parents were involved in a large number of activities mostly related to palliative care (research, education or clinical care initiatives). Three engaged in peer-to-peer support activities while the others preferred activities outside of clinical units and/or without direct interactions with other families. All of them reported that their participation had positive impacts, but two parents also reported a reactivation of traumatic experiences during a medical simulation activity. All participants expressed a desire for further collaboration. Motivation to contribute gravitated around two central themes: helping others and helping themselves. Many wanted to give back, help other families, improve the system and meet with providers who had cared for their child. All stated that this kind of involvement empowered them and gave meaning to their experiences. Providers and researchers all reported positive experiences, mainly due to the unique perspectives of bereaved parents who took part in their projects.
CONCLUSIONS: With careful recruitment and supervision, some bereaved parents can become resource parents involved in different types of activities. It is important to understand the positive impacts this type of engagement can have on their healing process and to control the risks related to their participation. Research is needed to develop pertinent tools and measures to evaluate the outcomes and impacts of their participation.
Mentors at seven United States and Australian academic institutions partnered with seven leading Indian academic palliative care and cancer centers to undertake a program combining remote and in-person mentorship, didactic instruction, and project-based learning in quality improvement. From its inception in 2017 to 2020, the Promoting Assessment and Improvement of the Cancer Experience (PC-PAICE) Program conducted three cohorts for capacity building of 22 Indian palliative care and cancer programs. Indian leadership established a Mumbai training hub in 2019 with philanthropic support, Quality Improvement Hub (e.g., QI-Hub) India. In 2020 the project which now focuses on both palliative care and cancer teams as EQuIP-India. EQuIP now leads ongoing Indian national collaboratives and training in quality improvement and is integrated into India's National Cancer Grid. PC-PAICE demonstrates a feasible model of international collaboration and capacity building in palliative care and cancer quality improvement. It is one of several networked, blended learning approaches with potential for rapid scaling of evidence-based practices.
The prescription of chemotherapy during the last weeks of a patient's life is a recognised criterion of decreasing quality of life but also survival. Targeted therapies have a particular efficiency and tolerance profile raising the question of their use in a palliative setting. Two patients were treated for a melanoma, at terminal stage, with poor efficiency of the symptomatic treatments. We introduced targeted therapies, which was previous treatments used in both patients.The evolution and benefits of the treatment was very different in our two patients and make us discuss the interest of targeted therapies in an end-of-life context and propose criteria for their maintenance or introduction in this indication. This discussion requires close collaboration between oncologists and palliative physicians and a very clear information given to patients and their relatives.
Durant la pandémie Coronavirus Disease 19, certains aspects habituels des retraits thérapeutiques ont dû être adaptés. L’accompagnement des patients et de leurs proches au décès ainsi que le soutien aux équipes de soins ont amené à résoudre de nouveaux défis. L’intégration des soins palliatifs dans les processus de retraits thérapeutiques aux soins intensifs a pu être mise en œuvre durant cette crise sanitaire. La formation continue aux questions en lien avec la fin de vie et l’établissement de plans de collaboration avec les soins palliatifs est essentielle aux soins intensifs.
OBJECTIVES: This is the second of a 2-part article that discusses essential case management practices and strategies amidst the novel coronavirus disease 2019 (COVID-19). The series showcases the potential professional case managers have in support of managing during a crisis such as a global pandemic. Part II continues to describe reenvisioned roles and responsibilities of case managers and their leaders to meet the needs of patients/support systems during the crisis. It focuses on the increased need for end-of-life care, impact on workers' compensation case management practice, and the self-care needs of the professional case manager.
PRIMARY PRACTICE SETTINGS: Applicable to the various case management practice settings across the continuum of health and human services, with special focus on acute care.
FINDINGS/CONCLUSIONS: The COVID-19 global pandemic has resulted in a crisis case managers and other health care professionals never faced something like it before. At the same time, it has provided opportunities for innovation and creativity including use of digital and telecommunication technology in new ways to ensure the continued delivery of health and human services to those who need them regardless of location. It has also resulted in the development of necessary and impactful partnerships within and across different health care organizations and diverse professional disciplines. Most importantly, this pandemic has required special attention to the increased need of patients for timely palliative and end-of-life care. In addition, it has prompted a focus on the safety, health, and well-being of case managers and other health care professionals, resulting in expanded workers' compensation case management practice coupled with the need for self-care and resilience.
IMPLICATIONS FOR CASE MANAGEMENT PRACTICE: Professional case managers are integral members of interprofessional health care teams. Their roles and responsibilities are even more necessary during the uncertainty of a global pandemic such as COVID-19. So far, the experience of this crisis has resulted in a deliberate need to ensure the safety of both, those who are the recipients of health care services and those who are responsible for the provision of care. Self-care and resilience of health care professionals and case managers, especially due to the complex dynamics of the COVID-19 pandemic, have advanced a desirable and necessary view of remote/virtual practice and as a strategy for enhancing the person's health and well-being. This pandemic has forced the development of impactful partnerships and collaborations among the diverse contexts of health care organizations and support service providers. These contexts of care delivery have also emphasized the necessary legal and ethical practice of case managers and the other involved parties. Experts agree that the innovative care delivery methods practiced during the pandemic will undoubtedly remain as desirable beyond the current crisis period.
OBJECTIVE: Palliative, end-of-life care (PEOLC) providers are poorly resourced in addressing the needs of patients with mental health challenges, and the dying experiences of this cohort-particularly those with a comorbid, chronic and persistent mental illness (CPMI)-are poorly documented. We sought to explore the experiences of PEOLC providers with regard to caring for patients with mental health challenges, and gather insights into ways of improving accessibility and quality of PEOLC for these patients.
METHOD: Twenty providers of PEOLC, from different disciplines, took part in semi structured interviews. The data were coded and analyzed using a reflexive, inductive-deductive process of thematic analysis.
RESULTS: The most prominent issues pertained to assessment of patients and differential diagnosis of CPMI, and preparedness of caregivers to deliver mental health interventions, given the isolation of palliative care from other agencies. Among the assets mentioned, informal relationships with frontline caregivers were seen as the main support structure, rather than the formal policies and procedures of the practice settings. Strategies to improve mental health care in PEOLC centered on holistic roles and interventions benefiting the entire palliative population, illustrating the participants saw little point in compartmentalizing mental illness, whether diagnosed or not.
SIGNIFICANCE OF RESULTS: Continuity of care and personal advocacy can significantly improve quality of life for end-of-life patients with mental health challenges, but bureaucracy and disciplinary siloing tend to isolate these patients and their caregivers. Improved interdisciplinary connectivity and innovative, hybridized roles encompassing palliation and psychiatry are 2 strategies to address this disconnect, as well as enhanced training in core mental health care competencies for PEOLC providers.
Les soins palliatifs demandent de plus en plus de compétences médicales, soignantes, humaines et éthiques, afin d’asseoir leur légitimité dans des domaines de plus en plus pointus de la médecine – réanimation, néonatalogie, cancérologie, gériatrie – ainsi que dans la diversité des prises en charge, y compris au domicile ou en EPHAD.
Dans ce contexte de développement des formations et d’élargissement des champs de compétences de la pratique palliative, cette 5e édition du manuel offre :
-les indispensables connaissances thérapeutiques ;
-les outils, à destination des professionnels en vue d’acquérir une compétence clinique pour la rencontre et l’accompagnement humain, psychique et relationnelle de la personne malade ;
-une contextualisation de la pratique des soins palliatifs dans leur dimension sociale, sanitaire et politique ;
-des jalons pédagogiques pour le développement des soins palliatifs dans leur dimension pédagogique et de recherche.
The coronavirus disease 2019 surge in New York City created an increased demand for palliative care (PC) services. In staff-limited settings such as safety net systems, and amid growing reports of health care worker illness, leveraging help from less-affected areas around the country may provide an untapped source of support. A national social media outreach effort recruited 413 telepalliative medicine volunteers (TPMVs). After expedited credentialing and onboarding of 67 TPMVs, a two-week pilot was initiated in partnership with five public health hospitals without any previous existing telehealth structure. The volunteers completed 109 PC consults in the pilot period. Survey feedback from TPMVs and on-site PC providers was largely positive, with areas of improvement identified around electronic health record navigation and continuity of care. This was a successful, proof of concept, and quality improvement initiative leveraging TPMVs from across the nation for a PC pandemic response in a safety net system.
During the novel coronavirus disease 2019 (COVID-19) pandemic, it is particularly critical to ensure that life-sustaining treatment (LST) such as intubation and resource-intensive cardiopulmonary resuscitation (CPR) are aligned with a patient’s goals and values, and to avoid LSTs in patients with a poor prognosis that are unlikely to be beneficial, but have a high risk of causing additional suffering. The high volume and acuity of COVID-19 patients makes it extremely challenging for emergency department (ED) clinicians to take adequate time to clarify goals of care (GOC). We implemented an ED-based COVID-19 palliative care response team focused on providing high-quality GOC conversations in time-critical situations. We examined the clinical characteristics and outcomes of patients who received this intervention.
Methods: This retrospective observational study was conducted in the ED of an urban, quaternary care academic medical center in New York, New York. We included 110 patients for whom the palliative care team was consulted between March 27, 2020, and April 10, 2020, with follow-up through May 9, 2020. Columbia University institutional review board approved this study and waived the need for informed consent.
Emergency department clinicians consulted the palliative care team for assistance with any palliative care-related needs, including GOC clarification and cases where stated GOC did not align with expected prognosis. The palliative care team (1 attending physician who was board-certified in hospice and palliative medicine, 1 hospice/palliative medicine fellow clinician, and 4 psychiatry resident physicians and fellow clinicians, all trained in GOC conversations and supervised by the palliative care attending physician) was available in person 12 hours per day, and for phone consultation overnight and on weekends. The palliative care intervention focused on GOC conversations: conveying the prognosis in a clear and simple way, exploring patients’ goals and values, and making care recommendations based on elicited goals.1,2
Deidentified demographic data were collected from the medical record. Primary outcomes included GOC before and after palliative care intervention, as well as GOC on death or discharge. Secondary outcomes included clinical course and length of stay in the hospital
Goals of care were defined as “full code” (pursue all LSTs including intubation and CPR); “do-not-resuscitate (DNR) only” (pursue all LSTs excluding CPR); “DNR/do-not-intubate (DNI), continue medical treatment” (pursue all LSTs excluding intubation and CPR); and “comfort-directed care” (forgo LSTs, deliver symptom-focused treatment only). The GOC were presumed to be full code if no advance directives or medical orders for life-sustaining treatment (MOLST) were found on presentation to the ED.
Six patients were still hospitalized at the time of data review; they were excluded from the analysis for clinical course.
Results: The 110 patients were aged a median (range) of 81.5 (46-101) years and 61 (55.4%) were women. Patient demographic and clinical characteristics are reported in Table 1. Most patients were community-dwelling elderly persons (aged >75 years) with at least 2 comorbidities and lacked decision-making capacity at the time of presentation. Very few patients presented with documented advance directives or MOLST and therefore were presumed to be full code.
The primary outcomes are summarized in Table 2. After initial palliative care intervention, the number of full code decreased from 91 patients (82.7%) to 20 patients (18.2%). Among these 71 patients (64.5%) in whom CPR was declined, mechanical ventilation was also declined in 61 patients (55.5%) (ie, 32 patients in DNR/DNI, continue medical treatment, 29 patients in comfort-directed care). On discharge, the number of full code further decreased to 9 patients (8.6%), whereas comfort-directed care increased to 54 patients (51.9%). The median (range) length of stay was 4 (0-28) days and 71 patients (68.2%) died in the hospital. Among 33 patients (31.7%) who were discharged alive, 6 patients (5.8%) were discharged with hospice care.
Discussion: The included patients’ demographic characteristics were consistent with those of critically ill patients with COVID-19 previously reported and with those of patients reported to be at highest risk of death from COVID-19. Patients without advance care planning conversations are known to be at risk of receiving unwanted, high-intensity, lower-quality care,5 even though many seriously ill patients do not prefer LSTs at the end of life.6
The most important finding in this study was, after palliative care intervention in the ED, most patients and their surrogates opted to forgo mechanical ventilation and/or CPR, and that tendency further increased on discharge. We believe timely GOC conversations by the palliative care team helped avoid unwanted LSTs for patients with a poor prognosis. Study limitations include potentially limited generalizability given the retrospective design at a single institution. Also, palliative care consultation was initiated by ED clinicians, which may have led to selection bias, though a high rate of altered GOC after intervention suggests significant, unaddressed need in the outlying population.
Aims and objectives: To explore nurses’ experiences and perspectives on discharge collaboration when patients receiving palliative care for cancer are discharged home from hospitals.
Background: Patients receiving palliative care for cancer experience multiple transitions between the hospital and their home. Poor discharge collaboration is a major cause of preventable hospital readmissions. Collaborative discharge planning could improve the care for these patients outside the hospital setting. Previous research has mostly been conducted in noncancer populations. Further research regarding both home care nurses’ and hospital nurses’ perspectives on care transitions is required.
Design: A qualitative study with descriptive and explorative design.
Methods: Data were collected through 10 individual, semi-structured interviews of nurses working at two oncology wards at a university hospital and home care services in four municipalities within the hospital's catchment area. Data were analysed using systematic text condensation. COREQ guidelines were adhered to in the reporting of this study.
Results: Three categories emerged from the data analysis: lack of familiarity and different perceptions lead to distrust; inefficient communication creates a need for informal collaboration; and delayed discharge planning challenges collaboration.
Conclusions: The nurses lacked an understanding of each other's work situation, which created distrust, misunderstandings and misconceptions regarding each other's abilities to care for the patient. This led to inefficient communication, relying on individual knowledge, informal communication and personal networking. Delays in the discharge planning resulted in poorly prepared discharges often lacking necessary equipment and documentation.
L’objectif de l’étude est d’identifier les freins et les leviers à la mise en place de la démarche palliative en EHPAD. C’est une étude ancillaire. Nous avons mené une enquête qualitative par entretiens semi-directifs auprès de médecins coordonnateurs d’EHPAD en Lorraine. Le recueil de données a débuté en janvier 2018 et s’est achevé en juin 2018. Les verbatim ont été analysés par théorisation ancrée. Onze médecins coordonnateurs ont participé à notre enquête. L’analyse met en évidence des contraintes structurelles et conjoncturelles propres à l’EHPAD dont l’absence de permanence médicale et infirmière, les limites des moyens matériels et personnels, ainsi que la possibilité des EHPAD intra-hospitaliers de s’affranchir de ces contraintes. La sensibilisation et la formation des acteurs de la prise en soins ont été identifiées comme des leviers majeurs dans la prise en charge palliative. À l’inverse, le manque de formation est apparu comme un obstacle. L’intervention des équipes ressources hospitalisation à domicile et équipe mobile de soins palliatifs est décrite comme un appui primordial. L’analyse a montré que l’organisation et la coopération des différents acteurs est un enjeu majeur pour la mise en place de la démarche palliative. Les dispositifs de personne de confiance et directives anticipées sont mal utilisés et ne sont d’aucune aide à la démarche palliative dans les EHPAD. Ainsi, la majorité des freins identifiés par l’enquête sont les contraintes structurelles et le manque de formation. Le principal levier à développer semble être celui de la formation, aux soins palliatifs et à l’utilisation des différents outils crées pour contourner les contraintes structurelles.
Objectives: Optimal cystic fibrosis (CF) end-of-life care (EOLC) is a challenge. There is little formal guidance about who should deliver this and how CF multi-disciplinary teams should interact with specialist palliative care. We assessed the knowledge, experience and preparedness of both CF and palliative care professionals for CF EOLC.
Methods: An electronic questionnaire was distributed to all members of the Oxford adult CF and palliative care teams.
Results: 35 of a possible 63 members responded (19 CF team; 16 palliative care). Levels of preparedness were low in both groups. Only 11% of CF and 19% of palliative care team members felt fully prepared for EOLC in adult CF. 58% of CF members had no (21%) or minimal (37%) general palliative care training. Similarly, 69% of the palliative care team had no CF-specific training. All respondents desired additional education. CF team members preferred further education in general EOLC while palliative care team members emphasised a need for more CF-specific knowledge.
Conclusions: Few members of either the CF or palliative care teams felt fully prepared to deliver CF EOLC and many desired additional educations. They expressed complementary knowledge gaps, which suggests both could benefit from increased collaboration and sharing of specialist knowledge.
Background: When patients receiving palliative care are transferred between care settings, adequate collaboration and information exchange between health care professionals is necessary to ensure continuity, efficiency and safety of care. Several studies identified deficits in communication and information exchange between care settings. Aim of this study was to get insight in the quality of collaboration and information exchange in palliative care from the perspectives of nurses.
Methods: We performed a cross-sectional regional survey study among nurses working in different care settings. Nurses were approached via professional networks and media. Respondents were asked questions about collaboration in palliative care in general and about their last deceased patient. Potential associations between quality scores for collaboration and information handovers and characteristics of respondents or patients were tested with Pearson’s chi-square test.
Results: A total of 933 nurses filled in the questionnaire. Nurses working in nursing homes were least positive about inter-organizational collaboration. Forty-six per cent of all nurses had actively searched for such collaboration in the last year. For their last deceased patient, 10% of all nurses had not received the information handover in time, 33% missed information they needed. An adequate information handover was positively associated with timeliness and completeness of the information and the patient being well-informed, not with procedural characteristics.
Conclusion: Nurses report that collaboration between care settings and information exchange in palliative care is suboptimal. This study suggests that health care organizations should give more attention to shared professionalization towards inter-organizational collaboration among nurses in order to facilitate high-quality palliative care.
Background: Caregivers are decision stakeholders; yet, few interventions have been developed to help patients and caregivers collaborate on advance care planning (ACP).
Objective: To evaluate a theory-based ACP pilot intervention, Deciding Together, to improve decisional quality, readiness, collaboration, and concordance in ACP decisions for older adult home health (HH) patients and caregivers.
Design: A one-group, pre- and posttest study using matched questionnaires was conducted. The intervention consisted of a clinical vignette, theoretically guided conversation prompts, and a shared decision-making activity.
Setting/Subjects:N = 36 participants (n = 18 HH patients; n = 18 family and nonfamily caregivers) were purposively recruited from a HH agency to participate in the intervention at patients' homes.
Measurements: Demographic and baseline measures were collected for relationship quality, health status, and previous ACP engagement. Outcome measures included perceptions of collaboration, readiness for ACP, concordance in life-sustaining treatment preferences (cardiopulmonary resuscitation, antibiotics, artificial nutrition and hydration, and mechanical ventilation), and decisional conflict. Descriptive statistics, Cohen's coefficients, paired t tests, McNemar's tests, and Wilcoxon signed-rank tests (and effect size estimates, r = z/vN) were calculated using R-3.5.1 (p < 0.05). Single value imputation was used for missing values.
Results: While no significant differences were found for perceptions of collaboration, and readiness for ACP, patients (r = 0.38, p = 0.02) and caregivers (r = 0.38, p = 0.02) had reduced decisional conflict at posttest. Patients' and caregivers' agreement increased by 27.7% for an item assessing patients' preference for artificial nutrition and hydration (p = 0.03).
Conclusions: This study suggests that collaborative ACP decision making may improve decisional conflict for older adult HH patients and their caregivers.
Interprofessional education allows students to collaborate with students and professionals of multiple disciplines. An Interdisciplinary Palliative Care (IPC) Seminar, held in the Midwest, involves students from disciplines of medicine, nursing, pharmacy, social work, and chaplaincy. The curriculum of the seminar incorporates asynchronous and synchronous didactic presentations, experiential learning through group exercises and discussion, along with home visits by students in interdisciplinary dyads. The purpose of this study was to determine whether students’ participation in a 3-week IPC seminar would positively influence their socialization and value of interprofessional collaboration with the ultimate goal of developing skilled professionals who engage in interprofessional practice in hospice and palliative care settings. This descriptive study invited participants to take a pre- and postseminar online survey using the Interprofessional Socialization and Valuing Scale-21 (ISVS-21) to assess shifts in students’ perceptions of interprofessional socialization and the value of collaborative health-care practice. In their pre-and postseminar scores, 71 participants reported they more strongly agreed with all items on the ISVS-21 after completing the seminar. The results from this study suggest the IPC Seminar is an effective educational model for advancing the value of interprofessional socialization and collaborative practice in hospice and palliative health-care.
OBJECTIVES: Palliative care services have, up to now, paid insufficient attention to social aspects of dying and bereavement and this has affected how patients and their families experience end of life and bereavement within their communities. New public health approaches to palliative care offer a different way forward by seeking to develop communities that support death and bereavement. Such approaches are now a priority for the majority of hospices in the UK and work with schools has been identified as a key area of work. Practice that engages schools and children on issues concerning end-of-life care is, however, underdeveloped and underdocumented. This research explored the role of hospices in working with schools to promote education and support around end-of-life and bereavement experiences.
METHODS: Action research was used to explore the potential for hospices to work with schools and engage participants in change processes. The research was conducted in 1 hospice and 2 primary schools in Scotland. Participants included children, parents and school and hospice staff.
RESULTS: Seven innovations were identified that were found to be useful for the school curriculum and the relationship between hospices, school communities and wider society. A model for integrated practice between hospices and schools is suggested.
CONCLUSIONS: This research adds to knowledge about how hospices might engage in community engagement activities that encourage school staff to develop greater openness and support around end-of-life and bereavement care for their children. This will require a rethinking of normal hospice services to also participate in community capacity building.
L’intervention des équipes mobiles de soins palliatifs, le plus souvent sollicitée par le médecin traitant, est essentielle pour accompagner et soutenir les professionnels et les patients. Anticipation, coopération et coordination sont les clés du succès.
La recherche en santé autochtone au Canada a été négligée dans le passé et qualifiée de problématique, notamment en raison du manque de collaboration avec les peuples autochtones. L'Énoncé de politique des trois Conseils sur l'éthique de la recherche avec des êtres humains décrit au chapitre 9 la conduite éthique de la recherche axée sur les Premières nations, les Inuits et les Métis. Les principes PCAP® des Premières nations (propriété, contrôle, accès et possession) soulignent l'importance majeure de l'engagement et de la gouvernance autochtones. En vue d'assurer que les buts et les activités de la recherche développée soient réalisés en partenariat complet et significatif avec les peuples et les communautés autochtones, il est possible de faire appel à des méthodes de recherche participative communautaire (RPC) intégrant leur plein engagement. Les recherches utilisant des ensembles de données secondaires, telles que les données administratives sur la santé recueillies en routine, ne devraient plus être exclues de cette approche. Notre objectif était de décrire comment notre équipe de chercheurs universitaires, alliée à un organisme national de santé autochtone, a adapté les méthodes de RPC dans le cadre d'un projet de recherche utilisant des données recueillies antérieurement pour examiner les lacunes dans la prestation de soins de fin de vie aux peuples autochtones en Ontario. Nous décrivons le processus d'élaboration de ce partenariat de recherche et expliquons comment l'intégration des principes de base et des processus de formation du savoir autochtones ont guidé cette collaboration. Notre partenariat de recherche, qui implique l'adaptation de méthodes de RPC, illustre un processus d'engagement qui pourrait guider d'autres chercheurs désirant mener des recherches en santé autochtone à l'aide de données déjà recueillies. Nous faisons aussi état d'une entente de recherche transparente, négociée équitablement entre un organisme national de santé autochtone et des chercheurs, qui pourrait servir de cadre pour des collaborations de recherche similaires. Il est essentiel de s'assurer que les perspectives autochtones soient au cœur des processus de recherche et qu'elles soient reflétées dans ceux-ci lorsque des données administratives sur la santé sont utilisées.