Description
Aim of the Project: advocacy and creation of educational tools for people with pulmonary arterial hypertension and their relatives. Target group's (patients) involvement in decision-making process, ensuring human rights for discriminated people group (patients with PAH). The main target group is people with disabilities, their family members, as well as the project promoter's staff. Indirect target group: decision-makers, health care professionals, media and society. Tasks: to develop patient competence; create tools for advocacy in health care and social field that can be used in long-term; to promote social inclusion, reduce social discrimination, develop democracy. Results: Innovative tools for the target group – a brochure for people with rare diseases about health care facilities; advocacy plan; educational work-groups; presentation about every-day life for people with PAH; Positive video-book (videos with good experiences); seminar.
Summary of project results
The project refers to very discriminative group – people with dangerous rare disease: pulmonary arterial hypertension (PAH) and their caregivers (relatives, siblings). The project was developed for the target group which diagnosis is not of the health cure compensation system of the Republic of Latvia. The target group was involved in an advocacy work of their interests. The project goal was creation of advocacy and education tools for people with PAH and their caregivers, involving the target groups in a decision-making process and ensuring respect for democratic values and human rights in general public. Project’s results - 4 unique and new advocacy and educational tools: Brochure about health care facilities; PHA Latvia Advocacy plan 2015-2018; Presentation “Breathe!”; Happy video-book and experts presentations; and PHA Latvia capacity building activity, an educational workshop gave the main benefit for the PAH patients and their caregivers: improved knowledge about their social rights, contributed to social inclusion, reduced social inequalities, project activities increased rare disease patients and their relatives understanding of health sector legislation, and the regulatory functions. These results ensure a basis for good governance in the health sector. The first time in the PHA Latvia history there was promotion of active citizenship involving in all activities the target group which made advocacy tools together with experts and project team. Participation of the target group was implemented by questionnaires, invitations to the events, individual work with people - interviews, filming, advising on project activities, and active participation in training and educational workshop. The project involved 282 people: 162 with PAH, 112 their caregivers, and 5 specialists in self-help and motivational activities. During project developed of target group competencies; created tools for advocacy in health care and social field that used in long-term; reduced social discrimination, developed democracy in health sector. Sustainability of results will provide that all tools of the project will be used for at least 3 years at PHA Latvia advocacy work, involving people with PAH and their caregivers in the organizations’ establishment and providing more deeply insight in the needs of target group.
Summary of bilateral results