Every half hour a child with cerebral palsy is born into the world. In Brazil, it is estimated that today there are around 40 thousand new cases of cerebral palsy per year. The latest IBGE census (2010) showed that 2,8 Brazilian children aged zero to four years have some type of neuromotor deficiency, caused by injuries or infections in the nerve centers and pathways that control the muscles. - at any stage of a person's life - or due to neuromuscular degeneration, whose external manifestations may be muscle weakness, paralysis or lack of coordination.
This situation has a strong impact on family relationships. Parents end up experiencing phases of grief, shock, denial, acceptance, adaptation and many difficulties on a daily basis in providing care to this child. But, most of the time, what parents need most is support and guidance for a situation that can be progressive. The highest incidence among neuromotor deficiency pathologies is cerebral palsy. Secondly, Down Syndrome appears.
As a result of observation in her clinical practice, researcher Jenifer Silva de Souza, who presented her master's degree to the Faculty of Medical Sciences (FCM) at Unicamp under the guidance of collaborating professor Keila Knobel about a year ago, with funding from Capes, found that this problem needed to be shared and guided. As a result, he has just launched with Keila Knobel the Illustrated Guide for Caregivers of Children with Neuromotor Disabilities, aimed at parents and caregivers.
This new guide is available electronically on the Memnon Publishing. Interested parties can register for free and do download of the work. It provides basic guidance, focusing mainly on early stimulation, a term that is not used as much today, although it is essential to help these family members at home as soon as they receive the diagnosis that their children have a motor or cognitive problem.
The guide provides positioning guidelines for the most varied positions (sitting, standing, with support, side position, how to position and stimulate) and is illustrative, with drawings of positions for parents to understand and stimulate their children.
One of the suggestions contained in the work is that, when playing with the child, they should be placed on their stomach and receive stimulation. The caregiver must hold her so that her hands are free to reach objects. Some creative resources for parents in children's day-to-day activities are pillows, tire tubes, pants, among others. "These are accessible and cheap tools mentioned in the guide to collaborate with the neediest population, our target audience”, highlights Keila.
At the end of the work, there are some tips for toys and games, such as using stimulation bottles, which can be made with water bottles. Objects such as marbles, water glitter, colored objects are introduced into them, for children to go after and pick up. The stimulation box can be made from cardboard, shoe box, etc. Just place objects, close the box and encourage the disabled child to go and find them. There are also some edible doughs made at home with flour that must be handled by the child.
Jenifer says that the guide is already being useful for the mothers in the research, so much so that many expressed that they would have liked to have had access to this material much earlier. The physiotherapist's plan now is to study the impact of the guide in various communities. "What we want most is for the guide to be received by people who need it. To achieve this, we will count on the help of other health professionals, from clinics, schools, universities, outpatient clinics, basic health units and interested parties, in order to popularize this material”, adds Keila Knobel.
Empowerment
Jenifer reports that she interviewed 16 mothers with children being followed up at the Physiotherapy Outpatient Clinic in the Neurology area of the HC at Unicamp and tried to hear what they had to say. “It is in the first moments that families and children most need help. However, sometimes they end up not being able to get treatment right away, due to the lack of space in some institutions.”
In Keila's opinion, the person responsible for the child must fully understand what is being transmitted by the multidisciplinary team, since many, when they get home, forget the instructions they received. This is why they end up passing on erroneous concepts to other caregivers, such as the correct positioning of the child. “The illustrated guide ended up helping to better reproduce the professionals’ statements”, she highlights. "The professionals who take care of these cases have technical and scientific knowledge, but the way they communicate knowledge in academia does not have the understanding of the public who needs this information. So we try to combine in our work this need observed in the clinic with the need to transfer information appropriately, without it being imposed.”
During the interviews, Jenifer tried to understand how mothers dealt with children at home: what were the difficulties and skills they had in caring for activities of daily living, from positioning the child, feeding, bath time, bedtime , what they thought was more complex, whether they knew how to deal with situations well, whether they received more specific guidance.
Most mothers informed Jenifer that they received instructions, but were unable to carry them out, largely because they work outside the home and leave the child under the responsibility of other caregivers, the same happening with those who attend daycare centers. The most frequently discussed difficulties were related to feeding and positioning. Jenifer noticed that many children end up just being held because their parents don't know how to position them or where to put them, or they stay in the crib without being stimulated.
In terms of mobility, the mothers addressed the architectural barriers that make wheelchair access difficult. They reported the difficulty of carrying chairs on the bus and having to walk on the potholed sidewalks. They also recalled basic issues that became more accentuated as the children grew. "They start to gain weight and then how can they give them a bath, if bath chairs are more suitable for adults?", highlights the physiotherapist.
“The wheelchair used by people with neuromotor disabilities is not the common type. It needs to be adapted, with the appropriate headrests; the seat belt changes; the seat has to be the right size, comfortable, with the correct foam density to avoid creating bedsores. The child must use orthoses and prosthetics to avoid bone deformations”, emphasizes Keila.
Physically, children generally have spasticity (increased muscle tone). Your muscle tone becomes more rigid. This does not favor the caregiver when it comes to dressing the child, putting on shoes, or putting on a diaper while the child is lying down. The person responsible is afraid to move it to the point of hurting it.
Children with more severe motor or neurological disabilities cannot sit, speak and sometimes cannot hear. When the degree is milder, this child generally demonstrates a developmental delay, however they may experience motor and neurological gains over time, with the proposed therapies and the involvement of the entire family.
Many family members participate in public policies and social work. “So we see that we have to empower these children’s families”, he notes. “We chose the youngest children (from zero to three years old) to approach, because, for the older ones, there are already technologies for communication, mobility and nutrition. "One dream is for them to be able to write messages, use the computer, turn book pages and use adapted motorized chairs that allow for a more independent life", points out Jenifer, who currently works at the Family Health Support Center, in São Paulo. Keila Knobel is a speech therapist specializing in audiology and scientific journalism, and works in a private clinic.
