Research on Psychosocial Support in Debrecen

A quality of life for those living with chronic illnesses depends on numerous factors, and continuous support is essential for maintaining mental well-being. Various health issues, especially rare autoimmune liver diseases, pose not only physical but also psychological challenges for those affected. Experiencing the illness often leads to social isolation, depression, and anxiety, which further complicates daily life.

Psychosocial support is of paramount importance; however, most healthcare systems have not yet devoted sufficient attention to this area. A recently launched research program aims to provide structured psychosocial support for patients suffering from rare autoimmune liver diseases, thereby improving their quality of life. This approach focuses not only on physical care but also on mental health.

Within the framework of the research, a system is being developed in five countries, including Hungary, that allows patients to support each other. The program aims to create a safe environment for participants to share their experiences and feelings and collaboratively find solutions for managing their illness.

Psychosocial support for those living with rare diseases

For patients living with rare diseases, psychosocial support is crucial, as chronic illness not only causes physical symptoms but also represents a significant psychological burden. The goal of the research project is to provide participants with a supportive system that enables them to share experiences and engage in collective problem-solving. Affected individuals can process the psychological difficulties caused by the illness within a structured framework, with the help of peers.

During the program, patients receive not only professional but also human support, which is particularly important for psychological well-being. Peer counselors are individuals who have also experienced the challenges of the illness and can help others by sharing their experiences. Their role is significant not only in coping with the illness but also in creating a sense of community.

Throughout the research, participants’ mental state and sense of social support are continuously monitored. The primary goal is to improve psychological well-being, while secondary objectives include measuring levels of depression and anxiety. Researchers hope that through the program, patients’ confidence and sense of control will also increase, contributing to an improved quality of life.

The goals and methods of the research

The three-year research is built on two main pillars, focusing on examining the effectiveness of the program. In the first phase, researchers concentrate on assessing the extent to which the program supports participants’ psychological well-being. The second phase aims to integrate the findings into everyday patient care practices.

The research is taking place not only in Hungary but also in other countries, allowing for the sharing of international experiences and the application of best practices. The project’s objective is to equip participants with knowledge and tools that help them cope with their illness and improve their mental state.

During the program, participants will also be involved in developing an internationally recognized patient care protocol, providing them with credible information about their illness. The aim of the research is for participants to not only be passive subjects in the process but to actively engage in improving their health.

The community experience of those affected and future opportunities

Living with a chronic illness often leads to social isolation, and participation in the study offers not only an opportunity for information gathering but also a community experience. Participants can learn not only about their illness but also form connections that can help lighten their emotional burdens.

Through the community experience and support, patients can mobilize resources that contribute to the success of managing their illness. The program aims to empower participants to become more confident in their health-related decisions and to be active participants in their treatment process.

The experiences and results gained during the research could contribute to the development of future healthcare systems that recognize the importance of psychosocial support. The goal is for patients to not only focus on treating physical symptoms but also place greater emphasis on maintaining their mental well-being. The program is expected to have a significant impact on participants’ quality of life and contribute to the advancement of support for those living with chronic illnesses.