Dear colleagues,
We are pleased to share with you the latest updates from the BetterCare COST Action, highlighting the progress of our working groups in promoting safer, more supportive home care.
This edition includes key activities, research outputs, training initiatives, and upcoming events- all aimed at strengthening the role of informal caregivers and improving home-based care practices.
Take a look at what’s been happening across our network:
Overview
WG2 is dedicated to fostering international discussion and mapping the current landscape of
informal caregiving and home care safety, while developing shared terminology, evidence-
based training, and ethical, legal and social frameworks to empower caregivers and improve
care quality at home.
National Workshops’ Survey
Status: In Progress
BetterCare Survey on Informal Caregiving Practices and Home Care Safety. A comprehensive survey was conducted among 64 healthcare professionals across 28 countries to explore definitions, training gaps, and safety practices related to informal caregiving.
Key findings:
- 65% of countries lack a formal definition of informal caregivers.
- Most respondents reported unawareness of structured training programs or national
strategies to reduce errors in home-based care.
Case Studies & Scoping Review
Status: In Progress
Caring at Home: A Scoping Review of Informal Caregivers’ Skills and Prevention Programs.
A scoping review analyzed 31 studies on informal caregiver training programs, with a focus on skills development and error prevention.
Key findings:
- Most programs focus on technical skills, activities of daily living, self-care, caregiver preparedness, and their impact on quality of life.
- Important gaps were identified in emotional support and the psychological aspects of caregiving.
During a recent session at the meeting held in Zagreb, a scoping review entitled “Emergency Management in Home Care by Family Caregivers” was presented. This was followed by a discussion on the planning of a systematic review focused on preparedness interventions for informal caregivers and their outcomes.
This line of research is currently in the planning phase and aims to further explore how to better support caregivers in managing emergency situations at home.
Glossary for Safe Home Care
Status: In Progress
Recognizing the need for clarity and consistency, WG2 is developing a unified glossary of terms related to informal caregiving and home care safety. This resource aims to support policymakers, healthcare providers, and caregivers by harmonizing terminology across the field.
A dedicated session was held during the meeting in Zagreb to review and refine the latest version of the BetterCare Glossary/Taxonomy. Experts provided feedback on individual items, and the glossary will be circulated again via email for further input using the Delphi technique, with the aim of reaching consensus.
The project is currently in the phase of collecting expert opinions to finalize the glossary and move toward the development of the BetterCare Taxonomy. Discussions are ongoing regarding the involvement of expert teams in this process.
Scientific Publications
Status: In Progress
- Enhancing Home Care Safety
https://doi.org/10.1016/j.jhqr.2025.101143 -
Defining Informal Caregivers in Europe: Key Roles, Safety Challenges, and Training Considerations
This study brought together 61 international experts to define the roles and challenges of informal caregivers, highlighting:-
The growing importance of informal caregivers in the care economy
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The need for formal recognition
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Training gaps, medication errors, infection risks, and psychological strain
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Technical Reports
Status: Initiated
Preparations for technical reports are underway to support WG2 findings and recommendations.
Meetings
First in-person meeting: February 27–28, 2024, at HOLM, Frankfurt (38 participants attending in person).
Second meeting: September 6, 2024, in Belgrade (13 participants attending in person and 5 online).
Online meeting: March 11, 2025 — discussions focused on glossary development, systematic review and mapping guidelines.
Third in-person meeting: June 26, 2025, at the University Hospital Centre Zagreb, Croatia.
Key activities included:
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Presentations by local experts on “The Contribution of Informal Care in Long-Term Care for Adults”, which sparked rich discussions and exchange of experiences among participants from different countries.
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A focus on mapping and evaluating existing national guidelines for informal caregivers through an online questionnaire. Small group discussions explored ways to develop user-friendly tools to help caregivers better understand their rights and responsibilities. Additional data collection through re-sent questionnaires was agreed upon.
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Review of the latest version of the BetterCare Glossary/Taxonomy, with feedback collected using the Delphi technique to achieve consensus.
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Presentation and discussion of a scoping review entitled “Emergency Management in Home Care by Family Caregivers”, followed by planning of a systematic review on preparedness interventions and outcomes for informal caregivers.
