Latin America Network for Primary Palliative Care

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

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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