Chronic patient summer school in Romania
Basic information
Project Title
Chronic patient summer school in Romania
Full project title
Cronic patient summer school in Romania
Category
Regaining a sense of belonging
Project Description
The idea of the chronic patient summer school is to connect the organ transplant recipients, dialyzed patients, their families and medical staff in functional network. The school is annual, and takes place in different cities of Romania. The main issues discussed during the school are:
1. Health and wellbeing of chronic patients
2. Social activities of chronic patients
3. The medical news in area of transplant and dialysis.
1. Health and wellbeing of chronic patients
2. Social activities of chronic patients
3. The medical news in area of transplant and dialysis.
Geographical Scope
National
Project Region
Romania
Urban or rural issues
It addresses urban-rural linkages
Physical or other transformations
It refers to other types of transformations (soft investment)
EU Programme or fund
No
Description of the project
Summary
Goal: Improving the pre- and post-transplant patients' life through their social and professional inclusion.
Objectives:
- development of the feeling of belonging to the group
- personal development, self-esteem and self-confidence for patient social and professional inclusion
- medical and social information
- art skills development (During the Art Therapy participants create different art and useful objects. We thought to support them to turn this hobby into a real activity.
- practice of sports and socializing.
Target group: pre- and post-solid organ transplant patients, on dialysis and their relatives.
Results: 7 editions (one/year) of the Summer School, with an average 110 participants/edition. The discussion topics are based on questions received from the patients.
Impact: The patient's quality of life is significantly improved. This project helps the participants to increase their self-confidence by developing the feeling of belonging to a community.
The uniqueness of this concept:
- the diversity of the group: The disease does not ask about nationality, age, social status, gender, level of education or anything else ... The disease comes, attacks and you have to fight it!
- the variety of fields and the overlaping of various disciplines that interfere with increasing the patient's life quality: medical, social protection, psychology, artistic fields, sports and any others that contribute to creating a positive attitude of the patient towards his life and belonging to the group, social and professional integration.
- durability of the results: following participation, patients create and maintain friendships, support each other emotionally and informationally, pass on the knowledge gained and share their experiences.
- the concept is alive: the activities are adapted to the needs of the participants.
- interactivity is a basic element, during the workshops we encourage participants to express their opinions, ask questions, propose ideas.
Objectives:
- development of the feeling of belonging to the group
- personal development, self-esteem and self-confidence for patient social and professional inclusion
- medical and social information
- art skills development (During the Art Therapy participants create different art and useful objects. We thought to support them to turn this hobby into a real activity.
- practice of sports and socializing.
Target group: pre- and post-solid organ transplant patients, on dialysis and their relatives.
Results: 7 editions (one/year) of the Summer School, with an average 110 participants/edition. The discussion topics are based on questions received from the patients.
Impact: The patient's quality of life is significantly improved. This project helps the participants to increase their self-confidence by developing the feeling of belonging to a community.
The uniqueness of this concept:
- the diversity of the group: The disease does not ask about nationality, age, social status, gender, level of education or anything else ... The disease comes, attacks and you have to fight it!
- the variety of fields and the overlaping of various disciplines that interfere with increasing the patient's life quality: medical, social protection, psychology, artistic fields, sports and any others that contribute to creating a positive attitude of the patient towards his life and belonging to the group, social and professional integration.
- durability of the results: following participation, patients create and maintain friendships, support each other emotionally and informationally, pass on the knowledge gained and share their experiences.
- the concept is alive: the activities are adapted to the needs of the participants.
- interactivity is a basic element, during the workshops we encourage participants to express their opinions, ask questions, propose ideas.
Key objectives for sustainability
Key Objectives:
- to encourage the development of the feeling of belonging to the group (A group that can offer emotional support and information related to the definitory factors of the chronic patient condition.)
- to encourage personal development, self-esteem and self-confidence for patient social and professional inclusion (An informed patient who is fully informed about the disease knows what to expect and how to manage its condition. On the other hand, by sharing experiences with each other, they will find it easier to overcome negative emotional states and gain confidence in themselves)
- to provide medical and social information useful for the self-management of chronic patient status (The activities within the School are carried out in workshops coordinated by specialists: doctors, psychologists, nutritionists, artists, athletes, physiotherapists, etc. During these, the participants receive information, may ask questions, etc.)
- to encourage the manifestation of artistic skills (During the Art Therapy and Handmade workshops we noticed that the participants have the skills to build different art and useful objects. We thought to support them to turn this hobby into a real activity.)
- to encourage the practice of movement/sports and socializing.
- to encourage the development of the feeling of belonging to the group (A group that can offer emotional support and information related to the definitory factors of the chronic patient condition.)
- to encourage personal development, self-esteem and self-confidence for patient social and professional inclusion (An informed patient who is fully informed about the disease knows what to expect and how to manage its condition. On the other hand, by sharing experiences with each other, they will find it easier to overcome negative emotional states and gain confidence in themselves)
- to provide medical and social information useful for the self-management of chronic patient status (The activities within the School are carried out in workshops coordinated by specialists: doctors, psychologists, nutritionists, artists, athletes, physiotherapists, etc. During these, the participants receive information, may ask questions, etc.)
- to encourage the manifestation of artistic skills (During the Art Therapy and Handmade workshops we noticed that the participants have the skills to build different art and useful objects. We thought to support them to turn this hobby into a real activity.)
- to encourage the practice of movement/sports and socializing.
Key objectives for aesthetics and quality
The Summer School period is a time full of interactive discussions, with new or old and unknown information, with exchanging stories and creating friendships. It was also an opportunity to spend time together, to create memories.
The Summer School creates the framework and provided the means for those present (patients from all over the country, but also from other countries) to increase their ability to manage their chronic patient condition, thus improving their quality of life. Participants went home more optimistic and confident in themselves and "tomorrow".
The feedback from the participants mainly concerned the request to repeat the event, possibly 2 times a year, with suggestions for supplementing the program of individual consultations with the psychologist and organizing workshops for vascular surgery, cardiology, gastroenterology, therapies alternatives (several).
The participants from Macedonia and Serbia were delighted with the concept of the School and the information they received, information they consider "important and necessary to increase the quality of life of a chronic patient with functional insufficiency of a vital organ, terminal phase" and which they will also share with their colleagues from their country. They expressed their desire to participate in such events organized by ATR, in as large a number as possible. (This despite the fact that the translation was done through the English language.)
The Summer School creates the framework and provided the means for those present (patients from all over the country, but also from other countries) to increase their ability to manage their chronic patient condition, thus improving their quality of life. Participants went home more optimistic and confident in themselves and "tomorrow".
The feedback from the participants mainly concerned the request to repeat the event, possibly 2 times a year, with suggestions for supplementing the program of individual consultations with the psychologist and organizing workshops for vascular surgery, cardiology, gastroenterology, therapies alternatives (several).
The participants from Macedonia and Serbia were delighted with the concept of the School and the information they received, information they consider "important and necessary to increase the quality of life of a chronic patient with functional insufficiency of a vital organ, terminal phase" and which they will also share with their colleagues from their country. They expressed their desire to participate in such events organized by ATR, in as large a number as possible. (This despite the fact that the translation was done through the English language.)
Key objectives for inclusion
The uniqueness of this concept:
- the diversity of the group: The disease does not ask about nationality, age, social status, gender, level of education or anything else ... The disease comes, attacks and you have to fight it!
- the variety of fields and the overlaping of various disciplines that interfere with increasing the patient's life quality: medical, social protection, psychology, artistic fields, sports and any others that contribute to creating a positive attitude of the patient towards his life and belonging to the group, social and professional integration.
- durability of the results: following participation, patients create and maintain friendships, support each other emotionally and informationally, pass on the knowledge gained and share their experiences.
- the concept is alive: at each edition, the activities are adapted to the needs of the participants and other factors.
- interactivity is a basic element, during the workshops we encourage participants to express their opinions, ask questions, propose ideas.
School for chronic patients in Romania is a real platform for the Ministry of Health, Ministry of Labour and Social protection to promote the new approaches in social inclusion of chronic patients. This is the unique possibility to demonstrate that chronic patients are the active part of society.
- the diversity of the group: The disease does not ask about nationality, age, social status, gender, level of education or anything else ... The disease comes, attacks and you have to fight it!
- the variety of fields and the overlaping of various disciplines that interfere with increasing the patient's life quality: medical, social protection, psychology, artistic fields, sports and any others that contribute to creating a positive attitude of the patient towards his life and belonging to the group, social and professional integration.
- durability of the results: following participation, patients create and maintain friendships, support each other emotionally and informationally, pass on the knowledge gained and share their experiences.
- the concept is alive: at each edition, the activities are adapted to the needs of the participants and other factors.
- interactivity is a basic element, during the workshops we encourage participants to express their opinions, ask questions, propose ideas.
School for chronic patients in Romania is a real platform for the Ministry of Health, Ministry of Labour and Social protection to promote the new approaches in social inclusion of chronic patients. This is the unique possibility to demonstrate that chronic patients are the active part of society.
Results in relation to category
The "Summer School of Chronic Patients" is a project designed and implemented by the Asociatia Transplantatilor din Romania (ATR) to support pre- and post-transplant patients for developed a chronic patient's management. The project is also addressed to the patients' families, so that the relatives can understand as many aspects as possible of the life of a chronic patient with functional insufficiency of a vital organ, terminal phase. This all looking for a good quality life of the participantes in the Summer school.
This year's edition, the 6th, took place in Eforie Sud between 02 and 09 September and had over 100 participants: patients (pre and post transplant, on dialysis), their family members, donors, representatives of similar ATR organizations in England, North Macedonia, Serbia. Also was present Ms Lynne Holt International Team Manager Liaison for World Transplant Games 2019 and European Transplant and Dialysis Sport Championship 2022, GB&I Team Manager, specialist in comunication.
As we proposed through the project, the Summer School activities were organized both in parallel and/or plenary workshops, but also in one-on-one interaction, in the case of individual sessions with the psychologist and those of Bowen therapy.
We have also managed to increase the interactivity within the workshops, well beyond the level of previous editions
Conclusions:
The Summer School period was a time full of interactive discussions, with new or old and unknown information, with exchanging stories and creating friendships. It was also an opportunity to spend time together, to create memories.
The Summer School created the framework and provided the means for those present (patients from all over the country, but also from other countries) to increase their ability to manage their chronic patient condition, thus improving their quality of life.
Compared to other editions, this year all the school's activities were monitored by 2 media representatives.
This year's edition, the 6th, took place in Eforie Sud between 02 and 09 September and had over 100 participants: patients (pre and post transplant, on dialysis), their family members, donors, representatives of similar ATR organizations in England, North Macedonia, Serbia. Also was present Ms Lynne Holt International Team Manager Liaison for World Transplant Games 2019 and European Transplant and Dialysis Sport Championship 2022, GB&I Team Manager, specialist in comunication.
As we proposed through the project, the Summer School activities were organized both in parallel and/or plenary workshops, but also in one-on-one interaction, in the case of individual sessions with the psychologist and those of Bowen therapy.
We have also managed to increase the interactivity within the workshops, well beyond the level of previous editions
Conclusions:
The Summer School period was a time full of interactive discussions, with new or old and unknown information, with exchanging stories and creating friendships. It was also an opportunity to spend time together, to create memories.
The Summer School created the framework and provided the means for those present (patients from all over the country, but also from other countries) to increase their ability to manage their chronic patient condition, thus improving their quality of life.
Compared to other editions, this year all the school's activities were monitored by 2 media representatives.
How Citizens benefit
Sustainability, inclusion and aesthetics are not only the simple words for our school. These are the main components of all our activities.
The current problems of healthcare sustainability is the active involvement of patients in health management through the empowerment of their abilities. Patients are important resources for co-creating health value together with medical staff and stakeholders. Our School is the example of the effects of patient empowerment on patients’ value co-creation behaviors.
The lectures and presentations are based on the surveys of Association members - we try to understand the urgent needs and problems.
Patients involved in care decisions have:
- More realistic expectations of side effects or recovery time
- Less anxiety about their treatment
- Greater adherence to their treatment plans.
Our main scope is to create a society of smart and responsible patients, with support of medical staff and stakeholders.
The current problems of healthcare sustainability is the active involvement of patients in health management through the empowerment of their abilities. Patients are important resources for co-creating health value together with medical staff and stakeholders. Our School is the example of the effects of patient empowerment on patients’ value co-creation behaviors.
The lectures and presentations are based on the surveys of Association members - we try to understand the urgent needs and problems.
Patients involved in care decisions have:
- More realistic expectations of side effects or recovery time
- Less anxiety about their treatment
- Greater adherence to their treatment plans.
Our main scope is to create a society of smart and responsible patients, with support of medical staff and stakeholders.
Physical or other transformations
It refers to other types of transformations (soft investment)
Innovative character
The summer school is envisioned as an alternative non-formal space of exchange of knowledge and ideas among patients, social workers and medical staff which shall provide more meaningful learning opportunities on a new or suppressed knowledge and expertise and improve the quality of life and social activity of chronic patients.
The school provides leadership for knowledge – building through development and testing of innovative approaches to emerging and current social challenges, with the objective of addressing critical practice and policy questions.
Through lecturers and workshops, open and stimulating QA sessions, the summer school strived to meet its major objective of increasing patients knowledge, critical thinking and civic responsibility to participate in social life, to actively engage with social, economic, political, and environmental landscape in which they live.
The school provides leadership for knowledge – building through development and testing of innovative approaches to emerging and current social challenges, with the objective of addressing critical practice and policy questions.
Through lecturers and workshops, open and stimulating QA sessions, the summer school strived to meet its major objective of increasing patients knowledge, critical thinking and civic responsibility to participate in social life, to actively engage with social, economic, political, and environmental landscape in which they live.
Disciplines/knowledge reflected
At our summer school we invite trained in many areas multidisciplinary team to give the comprehensive care and the right answers.
Our team members take time to listen to questions and concerns, which include medical, nutritional, social, financial and spiritual issues.
Workshop activities:
Nephrology - led by Ms. Cristina NARLA, nefrologist at the Fresenius dialysis center. Topics discussed: urinary infections; nutrition; the dialysis patient problems, interaction of immunosuppressive medication with other ones.
Psychology - workshop led by Mr. Cătălin TAȘCĂ, psychologist at the Fresenius dialysis center. We discussed the emotion management and fear control. A series of individual consultations were provided to patients.
The microbiology safety- led by Ms Iulia Iatco, PhD in biology. Iulia is a liver transplant patient and a Board member of ATR. The most common infections and how we can prevent them.
The framework contract of National health ensurer from Romania - led by Ms. Aurelia Dragoi, the PR of the Local Healths Ensurer of Constanța. The changes that concern patients' access to medical services and treatment, settled by the Ensurer.
Neurology - workshop led by Ms. Madalina Butuman, physician specialist in neurology at Mangalia Municipal Hospital. Topics covered: the influence of uremic syndrome on the brain and neurological system, neuropathies, restless legs syndrome and its treatment, etc.
Presentation in the Emergency Unit and The First Aid - workshops coordinated by Mr. Micea Ciorcan, physician specialist in emergency medicine, university assistant at UMF Timișoara, PhD student. Mircea is also a kidney transplant patient and ATR member.
Access to transplantation and the post-transplant condition in the UK - workshop led by Ms. Lynne Holt, nurseworked in Anesthesia and Intensive Care Service after lung and heart transplantation and communication specialist within the World Transplant Sport Federation.
Our team members take time to listen to questions and concerns, which include medical, nutritional, social, financial and spiritual issues.
Workshop activities:
Nephrology - led by Ms. Cristina NARLA, nefrologist at the Fresenius dialysis center. Topics discussed: urinary infections; nutrition; the dialysis patient problems, interaction of immunosuppressive medication with other ones.
Psychology - workshop led by Mr. Cătălin TAȘCĂ, psychologist at the Fresenius dialysis center. We discussed the emotion management and fear control. A series of individual consultations were provided to patients.
The microbiology safety- led by Ms Iulia Iatco, PhD in biology. Iulia is a liver transplant patient and a Board member of ATR. The most common infections and how we can prevent them.
The framework contract of National health ensurer from Romania - led by Ms. Aurelia Dragoi, the PR of the Local Healths Ensurer of Constanța. The changes that concern patients' access to medical services and treatment, settled by the Ensurer.
Neurology - workshop led by Ms. Madalina Butuman, physician specialist in neurology at Mangalia Municipal Hospital. Topics covered: the influence of uremic syndrome on the brain and neurological system, neuropathies, restless legs syndrome and its treatment, etc.
Presentation in the Emergency Unit and The First Aid - workshops coordinated by Mr. Micea Ciorcan, physician specialist in emergency medicine, university assistant at UMF Timișoara, PhD student. Mircea is also a kidney transplant patient and ATR member.
Access to transplantation and the post-transplant condition in the UK - workshop led by Ms. Lynne Holt, nurseworked in Anesthesia and Intensive Care Service after lung and heart transplantation and communication specialist within the World Transplant Sport Federation.
Methodology used
The Summer School of chronic patient in Romania is organized by the Association of Transplanted Patients of Romania, and takes place at the end of August in Romania, at Black Sea seaside. It provides a one-week intensive training on health and wellbeing, social active life of chronic patients - on dyalisis, in waiting list for solid organ transplant and transplant recipients.
It is aimed at patients, health and social care professionals, clinicians,researchers and managers who want to strengthen their understanding chronic patients active life, get a comprehensive overview of the state of the art in theory and practice.
COURSE DESCRIPTION
Health and wellbeing of chronic patients is gradually moving out of its niche and into the focus of decision makers, clinicians and managers around the world. This has also spiked interest in how theories, concepts and components of chronic patients can be operationalized and successfully implemented in practice.
In addition, the move from disease-focused to population management approaches including active participation of patients and communities further adds to the complexities.
It is aimed at patients, health and social care professionals, clinicians,researchers and managers who want to strengthen their understanding chronic patients active life, get a comprehensive overview of the state of the art in theory and practice.
COURSE DESCRIPTION
Health and wellbeing of chronic patients is gradually moving out of its niche and into the focus of decision makers, clinicians and managers around the world. This has also spiked interest in how theories, concepts and components of chronic patients can be operationalized and successfully implemented in practice.
In addition, the move from disease-focused to population management approaches including active participation of patients and communities further adds to the complexities.
How stakeholders are engaged
The project was designed by the members of Association of Transplanted patients of Romania, without any support from the local, regional or European level.
At the implementation phase we have got a strong support from the part of Mangalia local authorities,Liceum Calatis, Eforie Nord cityhall.
The Mangalia Cityhall provided the free entrance to museums for school participants, and covered all the costs of Marathon organisations.
The Calatis liceum was open with their halls and gym for school activities, as well with
At the implementation phase we have got a strong support from the part of Mangalia local authorities,Liceum Calatis, Eforie Nord cityhall.
The Mangalia Cityhall provided the free entrance to museums for school participants, and covered all the costs of Marathon organisations.
The Calatis liceum was open with their halls and gym for school activities, as well with
Global challenges
With recent advances in surgery and immunosuppressive drugs, organ transplantation has become a major treatment for irreversible organ failure. However, organ transplant recipients returning home after operation may face ongoing physiological, psychological, and social difficulties. To increase recipients’ quality of life, postoperative care and mentoring.
Thus, the aim of this project is to explore recipients’ difficulties and needs during postoperative care and social life.
The most common difficulties faced were psychological difficulties, followed by physiological, social, and other difficulties; the most common needs were psychological needs, followed by education and information training, social, and other needs. These results demonstrated that patients together with healthcare professionals can do more to provide patients with comprehensive care and promote successful self-management and quality of life. They also confirmed that collaboration between transplant teams, caregivers, and patients is necessary to optimize postoperative outcomes.
We promote post-transplant patients’ self-management and quality of life.
Thus, the aim of this project is to explore recipients’ difficulties and needs during postoperative care and social life.
The most common difficulties faced were psychological difficulties, followed by physiological, social, and other difficulties; the most common needs were psychological needs, followed by education and information training, social, and other needs. These results demonstrated that patients together with healthcare professionals can do more to provide patients with comprehensive care and promote successful self-management and quality of life. They also confirmed that collaboration between transplant teams, caregivers, and patients is necessary to optimize postoperative outcomes.
We promote post-transplant patients’ self-management and quality of life.
Learning transferred to other parties
This year's edition, the 7, took place in Eforie Sud between 02 and 09 September and had over 100 participants: patients (pre and post transplant, on dialysis), their family members, donors, representatives of similar ATR organizations in England, North Macedonia, Serbia.
Also was present Ms Lynne Holt International Team Manager Liaison for World Transplant Games 2019 and European Transplant and Dialysis Sport Championship 2022, GB&I Team Manager, specialist in comunication.
The Summer School period was a time full of interactive discussions, with new or old and unknown information, with exchanging stories and creating friendships. It was also an opportunity to spend time together, to create memories.
The Summer School created the framework and provided the means for those present (patients from all over the country, but also from other countries) to increase their ability to manage their chronic patient condition, thus improving their quality of life. Participants went home more optimistic and confident in themselves and "tomorrow".
The feedback from the participants mainly concerned the request to repeat the event, possibly 2 times a year, with suggestions for supplementing the program of individual consultations with the psychologist and organizing workshops for vascular surgery, cardiology, gastroenterology, therapies alternatives (several).
The participants from Macedonia and Serbia were delighted with the concept of the School and the information they received, information they consider "important and necessary to increase the quality of life of a chronic patient with functional insufficiency of a vital organ, terminal phase" and which they will also share with their colleagues from their country. They expressed their desire to participate in such events organized by ATR, in as large a number as possible. (This despite the fact that the translation was done through the English language.)
Also was present Ms Lynne Holt International Team Manager Liaison for World Transplant Games 2019 and European Transplant and Dialysis Sport Championship 2022, GB&I Team Manager, specialist in comunication.
The Summer School period was a time full of interactive discussions, with new or old and unknown information, with exchanging stories and creating friendships. It was also an opportunity to spend time together, to create memories.
The Summer School created the framework and provided the means for those present (patients from all over the country, but also from other countries) to increase their ability to manage their chronic patient condition, thus improving their quality of life. Participants went home more optimistic and confident in themselves and "tomorrow".
The feedback from the participants mainly concerned the request to repeat the event, possibly 2 times a year, with suggestions for supplementing the program of individual consultations with the psychologist and organizing workshops for vascular surgery, cardiology, gastroenterology, therapies alternatives (several).
The participants from Macedonia and Serbia were delighted with the concept of the School and the information they received, information they consider "important and necessary to increase the quality of life of a chronic patient with functional insufficiency of a vital organ, terminal phase" and which they will also share with their colleagues from their country. They expressed their desire to participate in such events organized by ATR, in as large a number as possible. (This despite the fact that the translation was done through the English language.)
Keywords
summer school
chronic patient
transplant recipient
inclusion
quality of life
