Playing sports has a strong positive impact on the quality of life of people with disabilities, including those who need a wheelchair and follow a rehabilitation program in a specialized center. We are talking about physical benefits, such as a better perception of one’s abilities and physical well-being, a greater sense of mental self-control of one’s body and physical abilities and an increase in the sense of industriousness and desire to do. These are some of the results presented on the occasion of the International Day of Sport for Development and Peace which is celebrated on 6 April, emerging from the qualitative investigation “Ada informs: sport and neuromuscular diseases”. The research was born as part of the educational project “La SMAgliante ADA”, with the aim of deepening the knowledge and impact that adaptive sports practice (sport accessible to those living with a disability) has on everyday life, health and on the psycho-physical well-being of children, teenagers and adults with 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 scientific view – declares 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 the NeMO Clinical Centers, SMA APS ETS Families Association, UILDM, FIPPS – Italian Paralympic Powerchair Sport Federation and Italian Paralympic Committee, with the non-conditional contribution of Roche Italia, the survey involved 67 young adults among those aged 18 to 40 and 50 parents of children and young people aged between 6 and 18, for a total of 117 interviewees, evenly distributed by age and gender. 34% of children/young people and almost 42% of adults interviewed practice sports. 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 emergence of powerchair football in recent years, especially for the younger generations. To confirm this commitment, the UILDM national president, Marco Rasconi, underlines: “Sport is a spark, an energy activator. 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 even in adaptive sport. For a young person with a disability, sport becomes a fixed objective. Starting to do sport makes all other activities more attainable, because when faced with the – I can’t do – linked to a diagnosis, the thought takes over – I can do everything”.
Although far from the numbers of those who do not have permanent motor difficulties, the percentages of those who practice sports are the concrete sign of the commitment of patient associations in this area, in almost fifty years of history. A commitment that must overcome the inertia of many healthcare workers in proposing sporting activities. “The choice to start an adaptive sport is dictated first of all by a 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 interviewees attend 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. For this reason it is important to continue to investigate the relationship between adaptive sport and health from a clinical and scientific point of view, with targeted functional evaluation scales, learning over time to also enhance the benefits and advantages that sport can bring in the history of illness. to their psycho-physical well-being and quality of life”.
The comic “La SMAgliante Ada” is back, to tell the story of life beyond SMA by Tiziana Moriconi 13 September 2022
A gym for life
The sporting experience is also and above all revealed in the emotional, psychological and social dimension, as reported by Silvia Bolognini, NEMOLAB psychologist and co-curator of the survey: “Playing in a team is a powerful vehicle for forming new friendships, consolidating social bonds and experience 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, interviewees report a perception of greater self-efficacy in using strategies to manage daily life; an improvement in self-esteem, with greater awareness of one’s personal abilities and self-confidence; an increased sense of determination in pursuing goals; of a sense of personal self-realization and aspirations and an improvement in mood.
“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 – continues Anita Pallara, president of Famiglia SMA APS ETS – 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 who are growing and with a motor disability such as SMA. Furthermore, practicing sports helps to get to know and manage one’s 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 one’s family circle, such as with the coach”.
Sma: sports fields, football tournaments and educational workshops for inclusiveness by Dario Rubino 04 July 2023
Obstacles to adaptive sports practice
The main difficulty highlighted by the survey is that of identifying a reference center accessible to sports suitable for one’s pathology, followed by the difficulty of organizing and managing transport, poor economic sustainability and the perception of little inclusiveness of the proposed sporting activities. “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 integration. But it offers us, at the same time, the description of silent lives that day after day are changing the perception of disability in our society. The Paralympic movement is at their side, in their testimony of enthusiasm and commitment, demonstrating that with sport it is possible to overcome one’s limits and contribute to the construction of a more just, more equitable, more supportive society”, comments Luca Pancalli, President of the Italian Paralympic Committee.
In Italy, the path of sporting inclusion for the neuromuscular community began fifty years ago with adaptive team sports: a pioneering challenge at the time that today represents a concrete and structured opportunity. But the changes in the history of these diseases, thanks to research developments, the advent of new pharmacological treatments, the evolution of new standards of care and the development of technology will inevitably also modify the sporting experience and its narrative.
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“For us professionals, the benefits of sports practice are demonstrated by the participation and resilience of the many athletes, families, volunteers, technicians, fans – explains Andra Piccillo, FIPPS Federal President – But investigations like the one carried out as part of this project are fundamental opportunities for organizations like ours to collect data and statistically tangible evidence on the benefits and impacts that the sports disciplines we promote have on the quality of life of the people who practice and experience them. Evidence of which we have immense proof in the form of stories, experiences, anecdotes and tales that we invite you to take a look at on the occasion of the international day dedicated to Powerchair Hockey on Sunday 7 April #ipchday”.