Sport is a unanimously recognized value but, in fact, around 4 out of 10 of those interviewed in the qualitative survey 'Ada informs: sport and neuromuscular diseases' practice it. The research – presented on the occasion of the eleventh International Day of Sport for Development and Peace, which is celebrated tomorrow 6 April – was born as part of the educational project 'La SMAgliante Ada', with the aim of deepening knowledge and The impact of adaptive sports practice (sport accessible to those living with a disability) on the daily life, health and psycho-physical well-being of children, teenagers and adults with spinal muscular atrophy (Sma) and muscular dystrophies.
“On this day in which sport is celebrated as a powerful tool for strengthening social bonds, solidarity, peace and respect, the voice of those who practice an adaptive sport is precious for building knowledge on a topic still little explored from the point of view of from a scientific point of view – states Alberto Fontana, president of the Nemo Clinical Centers – The data from this investigation, in fact, not only allow us to promote the positive impact that adaptive sports practice has on the quality of life of those experiencing a neuromuscular disease, a few months since the constitutional recognition of sport, but allows us to understand the development opportunities to learn to trace new meanings of the concept of care”.
Promoted by Nemolab, with the patronage of Nemo Clinical Centers, SMA Aps Ets Family Association, Uildm (Italian Union for the Fight against Muscular Dystrophy), Fipps (Italian Paralympic Powerchair Sports Federation) and the Italian Paralympic Committee, with the non-conditioning contribution of Roche Italia – yes reads in a note – the survey involved 67 young adults between 18 and 40 years old and 50 parents of children and teenagers between 6 and 18 years old, for a total of 117 interviewees, evenly distributed by age and gender, whose pathology requires, for the majority of respondents, the use of a wheelchair and adherence to a rehabilitation program at a specialized centre. Even though 34% of children/adolescents and almost 42% of adults interviewed are practicing sports, percentages far from those of the general population, the figure is a concrete sign of the commitment of patient associations in this area, in almost fifty years of history.
Swimming is the sport most practiced by the champion, especially in developmental age, followed by team sports, with the long tradition of powerchair hockey and the appearance, in recent years, of powerchair football, especially for the younger generations. “Sport is a spark, an activator of energy – observes Marco Rasconi, Uildm national president – It is a precious tool for inclusion without losing the aspect of competition. And it is precisely this balance that must be protected and maintained also in adaptive sport. For a young person with a disability, sport becomes a fixed objective. Starting to play sport makes all other activities more attainable, because when faced with the 'I can't do' linked to a diagnosis, the thought of 'I can do everything' takes over.” In fact, the data confirms that practicing sport has a strong positive impact on the perceived quality of life (62% of parents and 75% of adults) in terms of physical benefits such as: a better perception of one's abilities and physical well-being (70% ); a greater sense of mental self-control of one's body and physical abilities (55%), and an increased sense of industriousness and desire to do (80% of adults, 68% of parents).
“The choice to start an adaptive sport is dictated first of all by personal interest – underlines Elena Carraro, physiatrist, contact person for the rehabilitation area of the Nemo Clinical Center in Milan and co-curator of the survey – However, it is interesting to note how, despite the fact that the interviewees frequent a reference center for rehabilitation treatment, 52% of parents and 34% of adults report that they have not received any indication from healthcare personnel regarding the possibility of undertaking sporting activities, with any contraindications or benefits. This is why it is important to continue to also investigate from a clinical and scientific point of view the relationship between adaptive sport and health, with targeted functional evaluation scales, learning over time to enhance in the history of illness also the benefits and advantages that sport can bring to their psycho-social well-being physical and quality of life”.
On a psychological, emotional and relational level, “playing in a team – adds Silvia Bolognini, Nemolab psychologist and co-curator of the survey – is a powerful vehicle for forming new friendships, consolidating social bonds and experiencing the sense of belonging to a group, regardless of age, as highlighted by almost 40% of parents and approximately 66% of adults”. Not only that, the interviewees also reported: a perception of greater self-efficacy in using strategies to manage daily life (55% parents and 53% adults); an improvement in self-esteem, with greater awareness of one's abilities and confidence (70% of parents and 78% of adults); an increase in determination to pursue goals (75% of parents and 84% of adults), in a sense of personal self-realization and aspirations with an improvement in mood (60% of parents and 66% of adults).
“Through adaptive sporting activity, our children and young people have the opportunity to test themselves on a playground and live an experience like their peers – remarks Anita Pallara, president of Famiglie Sma – It's true, yes they also deal with their own limits, but they learn new skills to overcome them and this is fundamental especially for children in the growing phase and with a motor disability such as SMA. Furthermore, practicing sports helps them to know and manage their own body outside of the ordinary activities to which our children are accustomed, such as physiotherapy and rehabilitation, to strengthen the bond with parents, stimulate new friendships and create bonds of trust with people outside their family circle, such as example with the coach”.
The obstacles that prevent the practice of adaptive sports are, in particular, physical and structural barriers, such as the difficulty of identifying a reference center accessible to sports suitable for one's pathology (87.8% of parents and 86.6% of adults), the difficulty of organizing and managing transport, the poor economic sustainability and the perception of little inclusiveness of the proposed sporting activities (50% of those interviewed). “Inclusion is the goal of a long project – comments Luca Pancalli, president of the Italian Paralympic Committee – This investigation tells us how sport can significantly improve the quality of life of people with serious and very serious disabilities and promote paths of sociality and of integration. With sport it is possible to overcome one's limits and contribute to the construction of a more just, more equitable and more supportive society”. The benefits of sports practice “are demonstrated by the participation and resilience of the many athletes, family members, volunteers, technicians, fans – underlines Andra Piccillo, federal president of Fipps – But investigations like this are fundamental opportunities to collect statistically tangible data and evidence on the benefits and impacts that the sports disciplines we promote have on the quality of life of the people who practice and live them, as we invite you to take a look at, on the occasion of the International Day dedicated to powerchair hockey on Sunday 7 April”, on social media with #ipchday.
“More than diversity, I like to talk about uniqueness: we are all different and therefore unique – concludes Amelia Parente, Rare Condition Government Affairs & Transformation Enabling Head Roche Italia – Sport is one of the universal languages capable of carrying out a fundamental operation for social cohesion: recognizing the uniqueness and talent of each person while blending in with that of others. This is why we are proud to have been part of the educational project 'La SMAgliante Ada', which focuses on mental health, physics and diversity and inclusion as we want to understand it: uniqueness of each and unity among all”.
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