For Inclusive Health Policies

Description

The establishment of a palliative care system and the involvement of civil society is one of the priorities of the Republic of Croatia and is an integral part of the National Health Development Strategy. Nevertheless, the implementation of palliative care policies does not adequately reflect the needs of palliative patients and their families and does not include examples of good practice from other countries. CSOs operating in the field of formal and informal palliative care for policy advocacy have to build their capacity and professional competencies.

An advocacy platform and strengthened capacity of 10 CSOs will advocate for public policies in the field of palliative care and care for seriously ill and dying. CSOs will more effectively represent the needs of end-users and enable better recognition by the public and decision-makers.

The project will improve the Palliative Care Development Strategy 2021-2027 and its implementation, which will have direct consequences on the regulation of palliative care systems in Croatia, through improving health policy to meets the needs of end users and improves cooperation between volunteers, CSOs and health institutions in the implementation of palliative care. Project will improve the public awareness of 100,000 Croatian citizens on importance of palliative care which will raise public awareness and thus increase the chances to improve policies.

The project will also contribute to intergenerational cooperation by involving people under the age of 30 as volunteers in working with end users and other volunteers, most of whom are elderly. It will also contribute to intercultural dialogue through the inclusion of Roma and other national minorities in the working group for advocacy of public policies in the field of palliative care and care for the elderly and sick. Part of the activities will be held in Otočac, which will contribute to the development of the local community in the area.

Summary of project results

The establishment of a palliative care system and the inclusion of civil society organizations (CSOs) are among the key priorities of the Republic of Croatia and form an integral part of the National Health Development Strategy 2012-2020. According to data from the National Program for the Development of Palliative Care in Croatia (2017-2020), between 50% and 89% of all terminally ill patients require palliative care, which translates to an estimated 4,200 to 7,500 patients in the City of Zagreb. Additionally, approximately 30% of people pass away in their homes, meaning that 1,200 to 2,200 palliative patients in Zagreb die at home each year.

Despite these statistics, the implementation of palliative care policies does not adequately reflect the needs of patients and their families, nor does it incorporate best practices from other European and global models. Several key challenges contribute to this issue:

1. Lack of Advocacy Capacity Among Civil Society Organizations (CSOs)

   • Many CSOs engaged in palliative care primarily focus on direct support to patients and their families, leaving them with limited time and resources for policy advocacy and systemic communication of their goals.
   • Although they provide high-quality care to beneficiaries, their lack of engagement in public advocacy results in suboptimal representation of palliative patients'' needs at the societal level.

2. Inefficiency in the Development of National Palliative Care Policies

   • The working group responsible for drafting the National Strategy for Palliative Care 2021-2027 often operates inefficiently, leading to delays in policy adoption.
   • Due to this inefficiency, CSO proposals included in the drafting process are not always effectively integrated into the final version of the strategy, or their implementation lacks efficiency.
   • The current strategy fails to adequately include volunteers, who play a crucial role in complementing professional palliative care teams.

3. Limited Public Awareness and Social Support for Palliative Care

   • Due to the lack of advocacy and communication skills among CSOs working in palliative care, the broader public remains largely unaware of the challenges and needs of palliative patients.
   • As a result, there is a lack of widespread social support for policy changes that would improve care services and the inclusion of terminally ill individuals.

By addressing these challenges, the project aimed to strengthen the advocacy capacities of CSOs, promote more effective policymaking, and raise public awareness, ultimately improving the quality and accessibility of palliative care in Croatia.

The project aimed to strengthen civil society advocacy, improve palliative care policies, and raise public awareness through structured activities, research, and public engagement.

1. Advocacy Platform Development and Capacity Building

1.1 Formation of an Advocacy Platform

• A platform for palliative care advocacy was established, bringing together at least 10 CSOs, healthcare professionals, experts, volunteers, and end users.
• A formal agreement was signed, and a foundational document defining goals, decision-making processes, and activities was adopted.
• Working groups were formed for specific tasks, and meetings were held quarterly (both in-person and online).

1.2 Expert Meeting in Otočac

• A key expert meeting gathered 30 stakeholders from CSOs, healthcare, and academia.
• Best practices in health policy advocacy and palliative care were presented.
• Training sessions covered decision-making processes, policy influence strategies, and evidence-based advocacy through brainstorming, group work, and case studies.

1.3 Advocacy and Storytelling Training

• A two-day workshop trained 20 participants in storytelling as an advocacy tool.
• Participants practiced public speaking, role-playing, and media engagement to effectively communicate the platform’s goals.

2. Research and Policy Development

2.1 Research on Best Practices in Palliative Care

• A team of at least 5 experts conducted a comparative study on palliative care models in Norway and other countries.
• Findings were published online and in print, providing a foundation for policy recommendations.

2.2 Policy Recommendations for the National Palliative Care Strategy 2021-2027

• A working group developed recommendations to ensure the strategy better meets patient needs and is more effectively implemented.
• The process included stakeholder meetings, expert analysis, and integration of international best practices.

2.3 Advocacy for Strategy Implementation

• The recommendations were presented to policymakers at the local, regional, and national levels.
• A public event was held to present the proposal to media and stakeholders.
• At least three advocacy meetings were conducted with decision-makers to influence policy adoption and implementation.

3. Public Awareness and Media Campaign

3.1 Public Campaign Planning

• A professional agency was hired to develop a public campaign strategy in collaboration with La Verna and platform members.
• A service provider (individual) was engaged to create the visuals and three promotional videos for the campaign. The concept for these materials was developed by the advocacy platform members after receiving storytelling training. The goal was to convey the key campaign messages using storytelling techniques.
• The La Verna association and advocacy platform members carried out the public campaign to communicate the importance of palliative care. The campaign utilized various tools such as social media, YouTube, press releases to print and online media, interviews for online portals, and guest appearances in TV and radio shows to spread the message.

The project aimed to strengthen civil society, empower vulnerable groups, and promote active citizenship by enhancing knowledge and advocacy in the field of palliative care. More than 70 participants were involved in activities that improved their skills and understanding of palliative care, systemic challenges, and possible improvements.

Outcome 1: Strengthening the Advocacy Role of Civil Society

• Formation of an Advocacy Platform: The project successfully established an advocacy platform consisting of 13 organizations (11 associations and 2 institutions), exceeding the initial target of 10. These organizations represent different regions of Croatia, ensuring a broad perspective.
• Expert Meeting in Otočac:
  • Attended by 40 participants.
  • 11 best practice examples were presented, along with improvement proposals.
  • A set of recommendations for enhancing the palliative care system was developed and later used as the foundation for an advocacy document.
• Advocacy and Storytelling Workshop:
  • Platform members were trained on how to effectively communicate their advocacy messages to both professional and general audiences.
• Research on Good Practices in Europe:
  • Special focus on the role of volunteers in palliative care.
  • A survey was conducted among platform members and partner CSOs.
• Scientific Publication:
  • A paper titled "Volunteers in Palliative Care – A Strength in Caring for Palliative Patients and an Example of Empowering Care for Complex Patients" was published in Medix, a specialized medical journal.
• Advocacy Document:
  • Based on all previous activities, the "Advocacy Document with Proposals for Improving the Palliative Care System" was developed and used in policy discussions.

Outcome 2: Promoting International Standards of Human Rights and Values

• Advocacy for Palliative Care as a Fundamental Human Right:
  • The Advocacy Document was communicated to decision-makers and the general public through media.
• Policy Discussions and Support from Authorities:
  • 5 meetings with key decision-makers:
    • Parliamentary Committee on Health
    • Ministry of Veterans’ Affairs
    • Ministry of Labor, Pension System, Family, and Social Policy
    • Ombudswoman’s Office
    • City of Zagreb’s Department for Social Protection, Health, Veterans, and Persons with Disabilities
• Media Outreach:
  • 43 articles published in newspapers and online portals.
  • 10 TV interviews and 4 radio appearances.
  • Media coverage exceeded expectations, raising awareness about palliative care issues.

Outcome 3: Supporting and Empowering Vulnerable Groups, Promoting Citizen Engagement

• Publications and Presentations:
  • Scientific paper focused on volunteers in palliative care.
  • Advocacy proposals were presented to both policymakers and the general public.
• Collaboration with the Roma Youth Organization of Croatia:
  • Meeting with the organization’s vice president highlighted language barriers faced by elderly Roma in medical settings.
  • Recognizing that this issue affects not only linguistic minorities but also Croatian-speaking patients, a humorous video was created illustrating a doctor-patient conversation.
  • Another video was produced to explain the role of volunteers in palliative care.

Outcome 4: Increased Capacity and Sustainability of Civil Society Organizations (CSOs)

• Capacity-Building Activities:
  • Expert meeting, education sessions, research, and collaborative efforts to improve palliative care enhanced the long-term knowledge and sustainability of all platform members.

Through these activities, the project successfully strengthened civil society advocacy, engaged with policymakers, raised public awareness, and contributed to long-term improvements in palliative care services.