Bringing psychological support to MPS families through 360 video
13 de July de 2022
The MPS Spain Association is a non-profit organization that works to raise awareness of lysosomal diseases and to support individuals and families who suffer from this pathology, improve their life quality and promote their social integration. Its main objectives include advising, supporting and providing information to affected people, as well as raising awareness in society of patients and their family needs. In this context, Immersium Studio and the Universitat Oberta de Catalunya have cooperated with the members and medical professionals of this association in order to generate immersive resources that contribute a grain of sand in meeting these objectives.
In this post we are going to explain an initiative of the MPS Association and Immersium Studio that the UOC, FEDER and the Generalitat of Catalunya have made possible. The MPS association today publishes these resources in the open through its YouTube channel and in turn provides Virtual Reality glasses to the association members. Thus, the real use of the resource and the accompaniment of families are favored, which is the ultimate objective of the association.
La Asociación MPS Lisosomales
MPS Spain is the reference entity that works for those affected by lysosomal diseases at the national level. It was born from the interest and concern of a family who, after receiving the news of their daughter Sofía’s Sanfilippo diagnosis in 2003, contacted other parents in the same situation. After a first meeting in Utrera (Sevilla) together with five families they decided to come together to create the Sanfilippo Spain Association. In 2005 they became MPS Spain, supporting all diseases included in Mucopolysaccharidoses and Related Syndromes and later, in 2009, they added Fabry Disease. Currently, the association has become the benchmark in Spain for all Lysosomal diseases.”
¿What are MPS?
MPS are rare lysosomal storage disorders caused by a genetic abnormality. Patients who suffer from them lack the ability to produce an enzyme that is responsible for breaking down mucopolysaccharides, and this deficiency causes mucopolysaccharides to accumulate in the cells of all organs, especially in the brain, which causes a multitude of physical abnormalities. The characteristic symptoms are hyperactivity, sleep disorders, loss of speech, and physical and cognitive affectations. The MPS is an umbrella that encompasses different syndromes and pathologies such as Hunter Syndrome, Sanfilippo Syndrome, or Natowich Syndrome.
We recommend that you visit the following section of the association’s official website, where you can find more relevant information about MPS, such as how it is inherited, all the subtypes of MPS, an extensive presentation of the symptoms or the process diagnostic.
Psychological support for families
One of the aids offered by the Association is the psychological care service for those affected and their families. The association highlights how family members have to deal with multiple stress factors throughout the disease process: from diagnosis, which generates significant disorientation and disruption, to the daily care of patients, which usually contributes to further limit the life quality of the family nucleus. All of this constitutes major challenges that can cause a high level of suffering.
We all understand that suffering a chronic disease up close generates feelings of sadness, anguish, misunderstanding… But also, in the case of rare diseases, such as MPS, we must bear in mind that these are diseases that suffer from scarcity media, because the investment of resources in their research is not economically profitable. This is detrimental to those affected and their families, who see how advances in diagnostic processes and cures are delayed over time. The Spanish Federation of Rare Diseases affirms that diagnostic delay leads in 30% of cases to a worsening of the disease that could have been previously avoided or alleviated, and that 42.68% of people with these pathologies do not have a proper treatment.
The low rate of those affected at a statistical level also results in a lack of awareness and knowledge on the part of the population rest, which translates into social isolation of patients and their families. That is why it is important to make these diseases known, that is why it is important to become aware of their implications and understand that we can be part of a positive change that reverts to patients and their families.
For all these reasons, a psychological care service is essential that seeks to help alleviate suffering and resolve psychological disorders that may arise after diagnosis or during the disease process. The MPS Spain Association offers this service with the aim of enhancing the personal or group strengths of users, thus improving their quality of life.
The service covers 5 sessions of 1 hour of psychotherapy per patient per year and is in charge of Professor Eduardo Brignani.
Live with adversity. Immersive Resources by Immersium en 360 video
Immersium Studio has worked in co-creation with Professor Eduardo Brignani to generate this series of 360 immersive video resources entitled Coexist with adversity, reflections for day-to-day life that serve as support in psychological support for patients and families. It is a total of 4 videos that aim to clarify the doubts that family members may have at significant moments in their day-to-day life since the diagnosis of the disease is made.
The association’s psychologist, Eduardo Brignani, is the expert behind the rich content and rigorous psychotherapeutic focus of these resources.
The use of 360 video increases the retention of content in users since it allows families to be transported virtually so that they experience first-hand the advice of a reference psychologist in MPS such as Eduardo Brignani. The cognitive impact of this first-person experience through 360 video means that the retention of this content is multiplied by up to four in relation to experiences with non-immersive video. On the other hand, the open publication on a video platform, such as YouTube, allows families to have these tips at hand whenever they need to review them and refresh tools and approaches.
It is a total of 4 videos that aim to clarify the doubts that may assail family members since the diagnosis of the disease is made.
Eduardo Birgnani accompanies us in the diagnostic phase that, despite ending a long process of medical tests and uncertainty, opens up new questions and concerns for us. He will explain the emotional work behind overcoming the first crises, or how connecting with other families with similar diagnoses can help us get out of isolation.
Being aware of our emotions is key to taking control of our lives and coping with the disease. Every day is unique and that is why every day is perfect to experience what we are doing in here and now. Each new day is an opportunity to explore our sensations and draw strength from love for our sons and daughters and for oneself. In this video we will enjoy an excursion through the forest with the association’s psychologist while he explains the keys to maintaining vitality and strength in our day.
What we want as parents is to be able to give the time, care and attention that each son and daughter requires, and perhaps this means devoting more effort to the sick son or daughter for a while. It is a complicated situation that adults can understand with empathy, but at the same time it is difficult to explain all this to a little boy or girl who only wants his family love. For this reason, one of the problems that can appear in families with a son or daughter diagnosed with MPS is the appearance of behavioral or emotional disorders in their siblings. In this immersive video, the psychologist Eduardo Brignani has a conversation with a father who is worried about his family.
Who leads my life, the MPS or me?
Even when we have already overcome a long process of emotional management that has already paid off, we are human and we can return to stages of doubts and suffering. For example, when we stop to ask ourselves how the disease conditions us, or how the looks of our environment can negatively affect us. On this occasion, you will live an immersive experience in which Brignani will address you directly as a person diagnosed with MPS. The psychologist will accompany you assertively so that you can look inside yourself, work on anxiety and negative natural feelings, and thus resolve these new doubts from calm and introspection.
Expertising Immersium
As we explain in this post, the applications of immersive technologies in health open the doors to a more innovative health sector that allows families and patients to be part of the medical process in a new way and to be more and better informed. The figure of the specialist doctor continues to be key, while VR and AR are tools that facilitate the work of professionals.
At Immersium Studio we help generating memorable communication experiences that have a greater impact on people. You can contact our specialized team to receive advice on immersive technologies for your idea or project.
The Living with Adversity resources have been generated thanks to funding from:
