Latin America Network for Primary Palliative Care

Overview

Palliative care is the holistic care provided to individuals and their families who experience health related suffering related to life-limiting conditions. Palliative care is practiced by speciality level clinicians and also non-specialists. The term Primary Palliative Care (PPC) refers to the palliative care provided in primary care by primary care staff. In Latin America (LA), palliative care services have shown strong growth over the past two decades, but remain established and integrated in only a few localised areas across the region. Building on the success of the UoE's Global Access to Palliative Care Latin America (GAP - LA) Project led by the Usher Institute and funded by the UK Medical Research Council (grant number MR/V021400/1), primary care has been identified as a natural area for capacity building and strengthening to reduce health related suffering from serious illness and improve end of life care in Latin America. The researchers will collaborate with Pallium Latin America (PLA), a LA association involved in advocacy, education and clinical care in the region. The objectives of this study are: 1. To explore the facilitators and barriers to the implementation of a Latin American contextualised primary palliative care from the perspective of family medicine doctors 2. To list and describe the models in which palliative care is delivered within primary care 3. To define the process and outcome measures which would be meaningful for measurement of primary palliative care A Participatory Action Research (PAR) framework will be employed, combining both qualitative and quantitative components over 24 months. 30 to 50 primary care health professionals across LA will be recruited from the network already established by PLA to become co-researchers in line with the PAR methodology. 1. Online case-based discussion meetings (around 12 every 6 to 8 weeks) and post-meeting survey 2. Online individual semi-structured interviews (20-30) 3. Online co-researcher focus group discussions (3-5) 4. Co-researcher surveys 5. Documentary analysis Online meetings, interviews and focus group discussions will be recorded, translated and transcribed. Transcripts and surveys will be the data for analysis using NVivo, RedCap and MS Excell software.

This study's overall aim is to describe and understand how primary palliative care is defined in the setting of Latin America, what are the dominant typologies of care and meaningful outcome measures. Using case-based group discussions, this research will explore common scenarios relevant to providing palliative care in primary care settings by primary care workers in Latin America, and the knowledge that can be learnt and disseminated from these discussions. Objectives This study will achieve the overall aim above through the following objectives: 1. To explore the facilitators and barriers to the implementation of a Latin American contextualised primary palliative care from the perspective of family medicine doctors 2. To list and describe the models in which palliative care is delivered within primary care 3. To define the process and outcome measures which would be meaningful for measurement of primary palliative care 3 STUDY DESIGN AND METHODS A Participatory Action Research (PAR) framework will be employed, combining both qualitative and quantitative components (11). The research will be underpinned by a constructivist paradigm which will allow space and validity of differing perspectives and narratives emerging from the diverse contexts represented in this study, and avoiding seeking the obscure single point of reality The participatory focus of this study will ensure collaborative research processes and outputs that will help construct practical and applicable knowledge that addresses meaningful problems to co-researchers, their peers and their patients. All action research seeks to improve the status quo and thereby there are overlaps between PAR, quality improvement (QI) and implementation science (IS). Aspects of QI and IS will be employed in this research, 'Participatory approaches to implementation science (IS) offer an inclusive, collaborative, and iterative perspective on promoting, implementing, and sustaining evidence-based interventions (EBIs) to advance health equity'. Authentic participatory research is challenging within the requirements of ethical oversight and approval. While these requirements and boundaries are valid, appropriate and well-considered, they do create challenges for the iterative nature of participatory research. A preplanned and approved protocol has limited flexibility to respond to the ongoing input of co-researchers who are engaging with and reflecting on experiences, learning events and emerging data. Therefore, this project will involve two phases over 24 months. This protocol is seeking approval for phase one of the planned project. After the first phase, co-researchers will have the opportunity to further feed into the research and its protocol. Any amendments to the study protocol for phase two will be submitted for further approval by the research sponsor and ethics review committee in February 2027. This research will incorporate mixed methods of data collection. These are discussed in more detail below 1. Case-based discussion meetings (around 12) and post-meeting survey 2. Individual semi-structured interviews (20-30) 3. Co-researcher focus group discussions (3) 4. Co-researcher survey 5. Documentary analysis <!-- --> 1. Case-based discussion meetings (and post-meeting survey) The project will revolve around a series of online case-based discussion meetings with a group of primary care health workers, primarily primary care doctors with an interest in palliative care. These will occur every 6 to 8 weeks, and last around 90 minutes. Each meeting will consist of: 1. 5 minutes introduction to meeting 2. 15-20 minutes presentation of a case which has been prepared by a group member(s) according to a template. This will cover a real experience of caring for a patient and/or family affected by health-related suffering and a life limiting condition. No identifiable data will be shared in the template or in the discussion. Data will cover the demographic information, clinical scenario and context and the questions or challenges that the co-researcher(s) would like the group to discuss. A series of slides of the case will be shared to the group. 3. 40 minutes, the group will ask the presenter(s) questions and discuss the case and the challenges and facilitators. 4. 10-15 minutes where the presenter(s) will have the opportunity to ask questions to the group members 5. 10-minute closing with completion of the case template questions. At the closing of the meeting, a brief anonymous online survey will be made available to all participants. The survey will be constructed using University of Edinburgh REDCAP software, which provides data security meeting the university's requirements. This will cover short reflections, perceived barriers and facilitators to implementing any changes in their own practice and offer the opportunity for additional input into the research. This will promote equity and diversity within the research, as not all co-researchers will be equally confident in expressing themselves in the group discussion. These meetings will be hosted by Pallium LA and chaired by a Latin American, family medicine doctor co-researcher with experience of chairing such meetings. Meetings will be held primarily in Spanish, with translation into/from English when required for member(s). In line with all such Pallium LA's online events, meetings will be hosted on their organisation's Zoom account to optimise attendance across Latin America. Co-researchers' experiences of online meetings and educational events have shown that zoom is the most reliable and accessible platform in the region. Meetings will be recorded via a data secure method in accordance with the University of Edinburgh's information security protocol, transcribed and translated into English using the UoE's Electronic Transcription and Translation of Audio (ETTA) service and exported into NVivo for qualitative data analysis. 2. Individual semi-structured interviews Interviews will be undertaken with co-researchers over the duration of the project. Interviews will mainly be online, with face-to-face interviews where the opportunity arises, such as interviewer and interviewees' joint attendance at international conferences. Interviews will be hosted on MS Teams at mutually convenient times. They will last 45 to 60 minutes and cover experiences of providing palliative care in their primary care context. This will be an opportunity to explore at more depth the personal perspectives, issues, challenges, facilitators and barriers which have arisen throughout the research, and understand how these apply directly to the co-researchers' specific context. Interviews will be held in either Spanish or English as per the interviewee's preference. They will be audio-recorded, transcribed verbatim and translated if required into English for data analysis. 3. Co-researcher focus group discussions In addition to the case-based discussion meetings, three to five focus group discussions will also be undertaken over the duration of the project. These will differ from the case-based meetings, in that their purpose will be to allow specified time to discuss the research progress and ongoing reflections on the aims and objectives of the research. Topics for discussion will include • provisional emerging themes from the data collection and analysis (member checking) * revisiting the emerging Latin American contextualised definition of primary palliative care * the empowerment of LA primary care healthcare workers to undertaken palliative care, including implementation facilitators and barriers * direction of the research The discussions will be chaired by the principal investigator (DF), with translation provided as required. 4. Survey Co-researchers will be asked to complete an online survey at three points over the research duration. The survey will be constructed using University of Edinburgh REDCAP software, which will also provide data security. It will cover the demographic details of the co-researchers' clinical context in addition to their views on PPC in their region and country. It will also cover workload, types of diagnoses seen, support available within community, primary, secondary and tertiary care, access to key palliative care medications, and links to any policy documents. 5. Documentary analysis Any relevant documents highlighted by co-researchers as being relevant to primary palliative care in their clinical context, region, country and continent will be analysed. These will be publicly available policy documents, quality improvement reports, and publications. This will create an understanding of the macro-environmental context for the development of the primary palliative care. Study timeline Date Online case-based discussion meetings (audio-recorded) + post questionnaire Co-researcher focus group Individual co-researcher interviews Survey Documentary analysis 2026 March X X X April May X June X X July X August September X October X X November X X December X X 2027 January X X February Methodology review and ethical amendments March X April X May X June X July X August September X October X X November X December X 2028 January X February X X March X X X April X X X X 4 STUDY SETTING The PAR will be performed remotely across Latin America, representing as many countries as possible in the network of primary care doctors interested and invested in primary palliative care. This will mainly involve primary care doctors and allied health professionals. Occasional face to face encounters and data collection will occur if mutually convenient times and locations are found, such as at international conferences or visits. Pallium Latin America is based in Buenos Aires, Argentina where it provides palliative care and education. It has connections with palliative care advocates across South America. 5 STUDY POPULATION 5.1 NUMBER OF PARTICIPANTS It is estimated that 30 to 50 co-researchers will participate in this research study. The majority will be primary care doctors working in LA, with a minority being palliative care doctors, nurses, and allied health professionals. One to three participants will be non-health care workers involved in the Latin American Network for Primary Palliative Care (LANPPC) due to their lived experiences of caring for someone with a life limiting condition, and their current relationship with PLA. 5.2 INCLUSION CRITERIA Health care co-researchers Eligibility criteria of health care co-researchers: • Spanish or English speaking • Based and practicing in a Latin America country • Health care professional (doctor, nurse, or allied health care professional) • Working in primary or palliative care • Willing to give their written informed consent to participate in the research It is expected that the majority of co-researchers will be primary care doctors. 30-50 co-researchers will be recruited. Patient representative co-researchers In addition, one to three patient representatives will be recruited from the established informal network. This will be individuals who • Spanish or English speaking both • Is based in a LA country • Has personal experience of caring for a relative with health-related suffering from a serious condition. • Is willing to give their written informed consent to participate in the research. 5.3 EXCLUSION CRITERIA • Does not speak Spanish or English • Is not involved in primary care or palliative care • Is not based in a LA country * Is unwilling to give their written informed consent to participate in the research. In line with PAR methodology, this research occurs within a 'natural setting' where two or more practitioners pursue questions and answers to a shared interest. While traditional research methods involve recruiting participants or subjects 'into' research, our research occurs 'within' and with an established group of people connected by their involvement in LAPPC, therefore the researchers connected to the original GAP-LA project have been invited to further collaborate with our co-researchers to better achieve the research's aims. This network was identified following several informal meetings in Edinburgh and online between the UoE research team (DF, MS, MF and LG) with key individuals involved in Pallium Latin America (PLA); Professor Emeritus Gustavo de Simone (Founder and medical director of the PLA), Dr Carlos Arriagada (Primary care doctor working for PLA), Dr Nicolas Garrigue (Palliative care clinician and academic in Buenos Aires, Argentina), Corina Van Waveren (Non-health care professional member of PLA with lived experience of palliative care and local advocate), and Dr Luis Fernando Rodrigues (Palliative care doctor and academic at Faculty of Health Sciences, Barretos, Brazil). These individuals represent an established but informal network of individuals working in promoting primary palliative care across the continent. The case-based discussion format was agreed upon as the most appropriate way of providing peer support, sense of community, and peer-education for these co-researchers as well as being a key source of data to achieve the research's objectives. Two online exploratory and introductory meetings were held on 30th October and the 18th December 2025. These meetings were advertised across the PLA network. The first was attended by 25 health care professionals from eight LA countries, and the second by 44 from 13 LA countries, who were presented with the outline of the research project and objectives. In addition, Professor Marie Fallon and Professor Emeritus Scott Murray of UoE gave short presentations on the global history of the topic, with the opportunity for participants to ask questions regarding the primary palliative care in other regions and the research project. It is proposed that these individuals, who meet the eligibility criteria below, will become co-researchers. It is expected that a cohort of co-researchers will be engaged for the duration of the project, however participation is voluntary and any co-researcher is free to leave at any point. No payments will be made to co-researchers. Discussion meetings, focus groups and interviews will be held online at days and times which are the agreed by consensus by the group. Occasional face to face interviews will be undertaken where and when the opportunity arises. No travel expenses are required for co-researchers. 6.2 CONSENTING PARTICIPANTS Each prospective co-researcher will be emailed a Participant Information sheet (PIS) in English and Spanish which provides background, overview, an explanation of the study's purpose and details relating to co-researcher involvement. Prospective co-researchers will have at least seven days to read the PIS. They will be encouraged to seek clarification on any aspects of the study before making a decision. There is also an opportunity to contact the PI with any queries, concerns or requests for additional information or clarification as required. The information sheet will include the names and contact details of relevant researchers, allowing participants to ask any questions or seek clarification, including from an independent named professional, before providing consent. Consent will be obtained during the recruitment process using the consent form by the researchers . Co-researchers will be either electronically sign the consent form using AdobeSign or by emailing a scanned a signed copy to the research project email address. 6.2.1 Withdrawal of Study Participants Participants are free to withdraw from the study at any point, or a participant can be withdrawn by the Investigator. If withdrawal occurs, the primary reason for withdrawal will be documented in the participant's case report form if possible. The participant will have the option of withdrawal from: (i) all aspects of the study but continued use of data collected up to that point. To safeguard rights, the minimum personally identifiable information possible will be collected. (ii) all aspects of the research including data collected up to that point where it is possible to delete this data e.g., this data will not be used in the final data analysis. To safeguard rights, the minimum personally identifiable information possible will be retained e.g., consent form. This information will be provided to all participants on the PIS and the CF (both attached). Co-researchers are able to withdraw by emailing the PI. 6.3 LONG TERM FOLLOW UP ASSESSMENTS There are no current plans for longer term follow up assessments. Co-researchers will discuss this topic over the duration of the project. Any updates to this protocol will be agreed upon prior to the mid-way review of the protocol. Any changes will be incorporated to the next version of the protocol for approval by ACCORD and EMREC. 7 STUDY FLOWCHART Following ethical and sponsorship agreement the following steps are planned, with data analysis and synthesis occurring throughout the research. Date Online case-based discussion meetings (audio-recorded) + post questionnaire Co-researcher focus group Individual co-researcher interviews Survey Documentary analysis 2026 March X X X April May X June X X July X August September X X October X X November X X December X 2027 January X X February Methodology review and ethical amendments March X April X X May X June X X July X August September X October X X November X December X 2028 January X February X X March X X X April X X X X 8 DATA COLLECTION Personal data Written informed consent will be obtained prior to any data collection. All data will be pseudonymised at the point of transcription. Individuals will be allocated a pseudonym. A key to this code will be stored in a separate MS Excel document on an encrypted container stored within DataStore. Brief personal data will be collected for all co-researchers as part of the survey Case-based discussion meetings There will be around 12 case-based discussion meetings over the duration of the research. It is expected that up to 50 participants will attend. Meetings will last around 90 minutes. Output data includes the submitted case template, audio and video recording of the meeting, transcription and translation of meeting, and end of meeting short survey. The video will be recorded in addition to the audio to facilitate the transcription to better allow identification of the speaker. Co-researchers will be invited to upload relevant case reports using a provided template on a UoE project Sharepoint site. Access to the sharepoint site is restricted to only those given access by the research team. Uploaded cases will be used in the case-based discussion meetings. The case report will be downloaded from UoE SharePoint and uploaded and stored on DataStore, after confirmation that no patient identifiable data is present, and pseudonymization of the submitting co-researcher(s). Case-based discussion meetings will be hosted on PLA's zoom account. The meetings will be recorded on the PI's computer via screen sharing the zoom meeting onto a UoE account MS Teams meeting created for this purpose. The MS Teams meeting will thus be recorded direct to the UoE Onedrive, after which it will be directly transferred to DataStore, and deleted from OneDrive. Each zoom case-based discussion meeting will be transcribed and translated through the UoE's Electronic Transcription and Translation of Audio (ETTA) service. The audio-video recording will be deleted from DataStore once the transcription and translation has been verified. Pseudonymised transcripts will be exported into Nvivo for qualitative data analysis. Pseudonymised transcripts of the meetings will be stored in DataStore and in the UoE's LANPCC sharepoint site where co-researchers will be granted access to the transcript to facilitate member checking. All co-researchers will be invited to complete a short anonymous online survey at the end of the meeting. Post-meeting surveys will be recorded using the REDCAP software. This is hosted on REDCAP and will be accessible via an internet link via email or from the meeting chat function. It can be completed from the co-researchers' personal computer or their mobile device. REDCAP allows secured storage and analysis of data compliant with the UoE information security regulations. It is expected to only take a few minutes to complete. Semi-structured interviews 20 to 30 online individual interviews will be undertaken with MS Teams. Face to face interviews will be recorded using MS Teams on the PI's laptop. All interviews will follow a topic guide. They will last between 45 and 60 minutes. The audio from the MS Teams interview will be recorded direct to the UoE Onedrive, after which it will be directly transferred to DataStore, and deleted from OneDrive. Each interview will be transcribed and translated, where necessary, through the UoE's Electronic Transcription and Translation of Audio (ETTA) service. The audio recording will be deleted from DataStore once the transcription and translation has been verified. Transcriptions will be stored on UoE DataStore. Focus group discussions Three focus group discussions will be undertaken on MS Teams. Each group will have up to 10 participants, and will last up to 90 minutes. They will follow a topic guide. The audio from the MS Teams focus group discussion will be recorded direct to the UoE Onedrive, after which it will be directly transferred to DataStore, and deleted from OneDrive. Each discussion will be transcribed and translated, where necessary, through the UoE's Electronic Transcription and Translation of Audio (ETTA) service. The audio recording will be deleted from DataStore once the transcription and translation has been verified. Transcriptions will be stored on UoE DataStore. Survey All participants, around 50, will be invited to complete a more detailed survey three times over the research. This will be hosted on REDCAP software. Co-researchers will be emailed the link on set times according to the flowchart above. Questions are provided in appendix 7. It is expected that the survey will take 20 to 30 minutes to complete. 8.1 SOURCE DATA DOCUMENTATION Source data are defined as all information in original records and certified copies of original records or clinical findings, observations, or other activities in a clinical study necessary for the reconstruction and evaluation of the study. Source data are contained in source documents. Source data are a. Consent forms b. Case reports c. Audio and video recordings from case-based discussions, d. Transcriptions and translations from case-based discussions e. Powerpoint slides used in case-based discussions f. Post meeting short surveys g. Audio and video recordings from focus group discussions h. Transcriptions and translations from focus group discussions i. Audio recordings from interviews j. Transcriptions and translations from interviews k. Co-researcher surveys l. Publicly available relevant documents 8.2 CASE REPORT FORMS The case reports are completed by co-researchers who desire to present a case at a case based discussion meeting. The template contains no patient identifiable information. The questions are designed to allow sufficient information to be collated to allow a rich and helpful discussion on the scenario, and consider the barriers and facilitators to providing primary palliative care. These are shared via co-researchers access to UoE LANPPC Sharepoint site where they will directly upload the file. 9 TRANSCRIPTION AND TRANSLATION 9.1 TRANSCRIPTION SERVICES All audio recordings will be transcribed using the UoE's Electronic Transcription and Translation of Audio (ETTA) service. Manual second pass transcription will be undertaken by a member of the research team. 9.2 TRANSLATION SERVICES The UoE's Electronic Transcription and Translation of Audio (ETTA) service will be used for translation. Manual second pass translation will be undertaken by a member of the research team. 10 DATA MANAGEMENT All aspects of data collection, processing, and storage will follow GDPR guidelines and be outlined in a detailed Data Management Plan (DMP). Key aspects of data handling are as follows: Data storage Case reports will be checked that there are no identifiable patient details. They will be pseudonymised regarding the co-researcher(s) submitting the report. These will be uploaded by co-researchers to LANPPC sharepoint. They will also be stored on DataStore. Pseudonymised transcripts of case-based discussions and focus group discussions will be stored on DataStore. They will also be stored on LANPPC sharepoint to allow co-researchers' access. Co-researchers will not have access to the coding link for the pseudonumisation, which will be stored in an encrypted secure folder within DataStore which is not accessible to co-researchers. Pseudonymised transcripts of interviews will be stored on DataStore. Survey data will be stored within RedCap. Any data exported as reports from REDCAP for additional analysis purposes will be stored on University of Edinburgh password-protected DataStore servers. Only authorized research team members have access to the DataStore for data analysis and cleaning. Only authorized research team members will have access to the data for research purposes including coordinating, analyzing and/or data cleaning. In Edinburgh, digitally signed consent forms and participants' personal data (e.g., name, email, and other demographic details required for the study such as age, gender, role, position, work context) will be stored on a encrypted container within the DataStore system accessible only to the Edinburgh team. Personal data will be pseudonymised and assigned to the relevant qualitative data. No individual will be identifiable from the identifiers. A list of participant name by ID, will be stored securely and accessible only by the Edinburgh researchers. That ID will only be used to name demographic and interview recordings, once downloaded, and also for separately stored consent forms. The pseudonym key, or linking code, will be stored within an encrypted container stored in DataStore, separate to the pseudonymized data. All documentation and consent forms will be digital. No paper or hard copies will be produced. Data Use * Anonymised data will be analysed using NVivo software, MS Excel, and REDCAP software. * Findings will be presented in publications in a fully anonymized format. This approach ensures compliance with ethical standards, participant confidentiality, and data security throughout the study lifecycle. 10.1 PERSONAL DATA No physical personal data will be collected. Personal data will be digitally stored by the research team using a secure UoE DataStore server. This is only accessible to authorized research team members at Edinburgh. Data held at The University of Edinburgh will be stored in a DataVault server in compliance with the University's Information Security Policy for 5 years after the completion of the study. Video/Audio files will be destroyed after transcription and no anonymised data will be kept for re-use. 10.1.1 Data Information Flow For each participating co-researcher, a minimum level of personal data will be collected. The research team will only store these details for the duration of the study (24 months). All contact details will be deleted at the end of the study. All participants will be assigned a unique ID. An excel document linking IDs to participants will be kept in a encrypted container within a DataStore file. All anonymised documents will be saved under these unique IDs. Digital consent forms will include co-researchers names. These will be completed using AdobeSign or by emailing a scanned a signed copy to the research project email address. They will be securely stored under in a compiled folder of consent forms so as to not provide a link between ID and name. Survey data will be collected using Redcap software and input directly by co-researchers into Redcap through a link provided to them by the research team. Following collection, it will be pseudonymised using an ID code prior to analysis. It will be held on the Redcap server for analysis. Interview, case-based discussion group meetings and focus group discussions data will be transcribed, and recordings will be deleted. The transcriptions will be stored on a secure DataStore server.