Literacy in palliative and end-of-life care: Learning to understand each other
Online study day Thursday, February 6, 2025 from 8am to 12pm, Quebec time and from 2pm to 6pm, French time.
The Plateforme nationale pour la recherche sur la fin de vie and the Réseau québécois de recherche en soins palliatifs et de fin de vie (RQSPAL) are jointly organizing their fifth international francophone scientific day
Context
There are many myths and false beliefs about palliative and end-of-life care (PEOLC), such as that it is only about symptom management, or that it is
exclusively for the dying, and that it is not suitable for children. It is therefore essential to demystify them, keep stakeholders informed and enable the acquisition of skills among the population, people with a life-limiting diagnosis and their loved ones, as well as health and social services profession∙les and intervenant∙es, so that they are able to understand, evaluate and use health information about the different trajectories of care, dying and death. This approach gives meaning to this information, enabling its appropriation and empowerment, as well as the development of self-management skills at this final stage of life. Sometimes, however, the main∙ales actor∙rices in health and social services encounter challenges in meeting these people's informational and semantic or symbolic needs, as well as taking into account their emotional and experiential aspects. Considering the need to ensure accurate and appropriate information sharing, as well as the ability to question and understand wishes, it is essential to take into account various barriers such as age, cognitive abilities, socio-cultural context and stage of illness. In this sense, literacy in end-of-life care is a concept to be taken into account. Sørenson et al (2012) present health literacy as "the knowledge, skills, motivation and ability to locate, understand, evaluate and use health information when making decisions in healthcare, disease prevention and health promotion contexts to maintain or improve quality of life."
Dimensions
Literacy in PEOLC can be categorized into four dimensions:
- Knowledge of care trajectories, dying and death:
- People with life-limiting diagnoses and their loved ones need to understand their illness, the different hospice palliative and end-of-life care options available as well as the different possible care settings such as home, hospice and hospital settings, and finally, they need to understand the dying process.
- Effective and appropriate communication: It is essential that people with life-limiting diagnoses and their loved ones are able to communicate effectively with care providers to express their wishes, values and concerns regarding end-of-life care.
- Understanding interventions: EOLC literacy also involves understanding available interventions, such as pain relief, symptom management and emotional support.
- Advanced care planning, empowerment and wishes/volitions: People with life-limiting diagnoses need to be informed∙es about advanced care planning, for example through the advance care planning process or through the use of tools for formulating end-of-life wishes.
Issues
Generally speaking, the issues surrounding literacy in hospice and palliative care include:
- Accessibility: It is relevant to ensure that all∙tes, regardless of their place of residence or socio-economic circumstances, have access to the different services available in the healthcare system and that navigation between these services is facilitated while having access to clear information about PEOLC enabling them to make informed decisions.
- Language and cultural barriers: It is important that information on PEOLC is available in a variety of languages and in formats adapted to the different linguistic and cultural communities in the territory served.
- Training of healthcare professionals: It is necessary for health and social services professional∙les and intervenant∙es to be trained∙es to communicate effectively
with people with life-limiting diagnoses on end-of-life issues to help them make informed decisions. - Prejudice and taboos: It is appropriate to overcome the prejudices and taboos associated with death and end-of-life care so that people can address these issues openly and seek the support they need.
Potentially improving literacy in end-of-life care could help ensure that people with life-limiting diagnoses receive early access to care that matches their wishes and desires, meaningful end-of-life care and thereby improve their quality of life at this difficult time.
Several researchers∙ses from a variety of backgrounds will explore the themes of literacy for individuals with hospice palliative care as well as their loved ones. This Day will be an opportunity to present portraits, findings and suggestions for improvement and innovation. It will also serve as a foundation for further research aimed at better understanding and supporting the improvement of literacy among people with hospice palliative and end-of-life care, their loved ones, health and social services professionals∙les and intervenant∙es, and the general public.
Objectives
- Share research experience and new knowledge on issues related to the literacy of people with PEOLC, their loved ones, health and social services professionals∙les and intervenant∙es, and the population;
- Identify and understand literacy challenges in PEOLC;
- Explore avenues of solution for improved literacy in PEOLC;
- Determine future research directions on the topic of literacy and information needs in PEOLC.
Call for papers
The organizing committee is looking for five speakers∙ères for this event. We are looking for established∙ses∙es with in-depth knowledge and data/results to present related to the theme. Previous editions of this event have generated an average of 350 registrations (Quebec, Europe and Africa).
This online Scientific Day will be an opportunity to showcase what's being done in Quebec, France and the rest of the world in terms of research on PPVS. Five 40-minute lectures are planned, with 25-30 minute presentations followed by a 10-15 minute discussion period. It is essential to respect the exchange period as the event is intended to be interactive and this is what participants∙es anterior∙es are looking for.
Guidelines for preparing your abstract
- 300 words maximum
- Given the French-speaking nature of the event, writing and speaking must be in French.
- Be sure to clearly demonstrate the relevance and purpose of your presentation in relation to the theme.
- The use of tables, graphs or images is not permitted in abstracts.
- Use generic drug names.
- The use of acronyms and abbreviations is permitted as long as you write the word in full the first time you use it in the text (put the acronym in brackets).
- Do not capitalize the title or any part of your abstract.
- Read your summary carefully.
Scientific study/research abstract format
We strongly suggest this format for your abstract: A) Objectives, B) Methods, C) Results, D) Discussion
The discussion should be supported by data. Literature reviews are also welcome.
Timelines
Limit for abstract submission: September 27, 2024
Response from the organizing committee: November 14, 2024
Presentations will be filmed and added to the organizers' Youtube channels and websites.
Download the text of the call for papers