How to make your tele-rehabilitation session a success
Fightthestroke's advices for remote therapy during social distancing due to covid-19
Image source and description: from the Mirrorable project repertoire - the picture represents a child and an adult from behind, looking at a computer screen with images, at the end of a tele-rehabilitation session. The images in the article are taken from the Mirrorable project, developed in collaboration with Stefania Marcoli and Frog Design.
With the quarantine days due to the COVID-19 emergency, the need to maintain a routine and continuity for therapeutic treatments in families with people with disabilities also increases. In a strange rhythm of life, in which dreams overlap with the concreteness of domestic life, our future plans are in a limbo, the lives of our children have moved online and, as parents of children with disabilities, suddenly we have found to be our son's teachers, nurses, therapists and sports coaches,on top of our usual role of 'caregiver', the management of a super-crowded house and the work we normally do to live. Ours was already a life outside the normal canons, even without a global pandemic: to say that we are stressed would not make the sense of what many families are experiencing these days, living so close under one single roof.
The families of Fightthestroke community were already used to interact online and some of them had participated in the experimental Mirrorable tele-rehabilitation program: it is from the experience of our clinical trial, started in 2016, that we have taken the best advices to face a tele-rehabilitation or tele-coaching session (depending on whether the operator follows you in the exercises during the whole rehabilitation session, or if during remote connections he indicates a plan to follow later on independently). Share them with your rehab center and take advantage of this quality time together!
Why tele-rehabilitation must become a new standard during a new normal.
At mid March 2020 the home workers, the so-called 'smart workers', had increased by 554,754 units in Italy due to the emergence of the corona-virus (data source: Italian Ministry of Labor), allowing in a short time not only to limit the contagion, but also to close the digital gap of many Italian families and to reduce the costs for travel and environmental pollution.
It is in this context that tele-rehabilitation fits, the possibility of guaranteeing continuity of care to families with a child with Cerebral Palsy, a new method recommended also by the main scientific societies, Simfer and Sinpia.
From a survey among the #Fightthestroke Families community, the closed group of self-help on Facebook, on the 10th of April, 2020, more than 50% of the sample received a call from the rehabilitation services in the area, to warn of the forced interruption of treatments , but only 1 on 3 of the sample declares to be followed up with remote tele-rehabilitation sessions, and just over the 10% of those who answered the survey has no longer had any contact with their own rehabilitation center since the lockdown period for Italy. Few and sporadic cases are those who are still followed by centers in their area, for non-deferrable rehabilitation treatments (for example, after a surgery), either at the center or at home therapy.
Yet in addition to the savings benefits for the whole civil society, tele-rehabilitation can provide the family with specific goals to work on, a new routine in your home day and a little more confidence with the therapist that you will get to know with a new lens. Indeed, tele-rehabilitation also allows operators to open a window in your daily life and to share tips aimed at better managing the child, using a favorable environment and the games your child is most fond of.
Whether it is physical therapy, occupational therapy or speech therapy, these tips can be useful and easily applicable both by therapists and by family members.
Most parents do not aspire to become a therapist of their child but in the face of an urgent need and the developmental stages that run away, each of us parents lives the responsibility of being able to do more and tele-rehabilitation offers just this opportunity: the chance for the parent to increase the frequency of treatment, while following the guidelines and goals set by the therapist or by the doctor.
Don't worry if you don't feel safe at the first connection or if your child sometimes finds it difficult to work with the mom wearing the therapist's hat: your therapist will help you overcome the challenges you’re facing, guiding you through the screen. Operators are even more your guide and ally now, and they shouldn't be on the other side of the fence to criticize you. So that upon returning from this parenthesis, the new acquired skills will only help your child to continue progressing, and together you will also have learned something new to keep as a routine at home.
10 practical tips to activate a successful tele-rehabilitation session
1. Tech set-up: Fill in all the documents due to start up the organizational process, your therapist will send them and they will mainly concern the processing of data, according to the existing privacy regulations. In case you’ll be missing a platform developed on purpose for tele-rehabilitation, as Mirrorable, you can choose together the best platform on the market for messaging, remote collaboration or video conferencing, bearing in mind the equipment availability for both the family and the center, and the power of the network connection for data transmission. The most used platforms nowadays, mostly free of charge, are: Whatsapp, Facetime, Skype, Zoom, Cisco Webex Meeting, Google Meet, BlueJeans, Microsoft Teams. Organize a test session to check the main commands needed during the connection, the stability of the connection, the correct use of webcams and microphones; if you use platforms that allow different screens and views, also evaluate the health conditions of the child with respect to the activation of epileptic seizures due to light flashing.
2. Scheduling the session: You can choose together with the therapist to keep the same time slot in which you usually performed outpatient therapy, but your routines and calendars will be more likely to have changed due to the emergency, and therefore you will have to schedule a new time to connect. The family availability calendar will have to take into account the new rhythms of the children, the availability of multiple devices in the family, a dedicated room and an adult person available throughout the all session. To maintain inclusion and inspire imitation among peers, you can also organize rehabilitation sessions in small groups, which will therefore require a different organization of the calendar.
3. A new setting: The therapy setting must be recreated from scratch and we recommend to identify a quiet and fixed location for all connections, also knowing that houses can be pretty crowded during these days. We often suggest to create a dedicated environment, not only with walls but even a pillow, flowers, music and rituals can be enough to set up a new space: the therapy environment must be containing and adapted to that single child. At the beginning of the rehabilitation cycle, you will establish with the therapist the new goals, the equipment you have at home and your child's favorite games during this period. You could also consider hiding some toys so that they are seen as more appealing when it is time for the first date. You can consider using a laptop or a tablet for the session because it is easier to support if you want to capture images of the whole room on video. Remember to employ siblings or pets in other home activities, other ways they can be distracting for your child.
4. Welcome to the first session: At this point you have already defined the goals of your new tele-rehabilitation program. When the time comes for the session, start by summarizing the past week, the activities you have worked on together or those you would still like to do; tell the therapist about the challenges experienced to customize the session.
5. Opening rituals: Let’s begin the session slowly and establish a ritual for starting the therapy after a quick introduction. It can be a magic formula, a gesture, a song or a book to read together: here are some awareness exercises or quick entertainment videos that can inspire you (in Italian).
6. Therapy session, time to practice: Feel free to ask the therapist to also define the expected role of the parent during the session: it can be supportive, reactive or proactive. This is the time to ask all the useful questions for a good understanding of the treatment. The connection time may not be enough to cover all the topics you would like, having in mind the benchmark of a face-to-face session, and that's okay! Quality is much more important than quantity when it comes to tele-rehabilitation.
7. Closing rituals: At the end of the session ask ONE thing to concentrate on during the next week, having a sheet or a trainer agenda to write down the indications received will be useful in the following days. Even better, ask how you can incorporate that single activity into your daily routine. Parents and children have enough to do while they are at home on these emergency days and there is no need to experiment with a thousand extra therapy activities at home. Close the session with the ritual established at the beginning. Consider using positive reinforcement mechanisms to keep the child's attention high (e.g. little stars, medals, cups, or simply a 'buffer' space where the child can show to parent and therapist something that is most proud of, it can be his dog or the discovery of the latest video game carachter, let him/her choose it).
8. Therapists guidelines: This is the era of the 'naked king', if you had established a good therapist-child relationship before stopping face to face treatment, you can certainly take advantage of this relationship credit. However, the therapist will have to regain the confidence of the new dyad, both of the child and the parent, but now through a screen and with people who could have changed their roles and attitudes during the lockdown period: in language and body expressions, the therapist will not have to make judgments towards the 'new patients couple' ('but do you never help mum now that you are at home?'), towards the new lifestyle habits ('but do you always wake up so late now?'), towards the home environment ('but don't you have your own bedroom?'). If the therapist deals with motor enhancement, he/she should limit his recommendations and his/her coaching to this sphere of skills: the tendency to give psychological or multiple recommendations to other areas can be dictated by the desire to fully help the family in need, but better not to risk to provide unrequested judgments or play at the little psychologist during these days. It is likely that the child you are following is already at its third daily online session and that you arrive after the school teacher, the scouts and the judo teacher who have already asked him to describe his emotions. Remember that you are not giving up your professionalism or your indications to a parent who tomorrow will decide not to be your customer anymore: mutual trust and therapeutic alliance, this is the secret recipe; it will not be necessary to remind 12 times to a stressed mom that these are games and not exercises: this is an EMERGENCY and children must be able to maintain the continuity of rehabilitation treatments. Full stop. Finally, remember that the treatment must be adapted to that individual child and do not propose standard activities only because they are part of your weekly plan: proposing the history of Corona Virus in augmentative communication may not be the best choice to get the attention of a child who fully speaks, reads and writes. Parents can be your allies in this challenge, but do not abuse of their time: do not ask them to do DIY jobs if this is clearly a therapeutic exercises, being all at home does not mean having more time available just to play or just to do exercises. Be honest and fair, with the parent but above all with children of all ages. Establish a classroom agreement.
9. Caregivers guidelines: In the therapist's classroom agreement it must be written that during the session the little patient must be well washed and dressed, he’s not allowed to eat or drink and he needs to pee before starting or at the end of the treatment: it is the parent's job to keep the right setting and respect for established rules. If you decide that the parent must be an active part of the session, the parent is not allowed to do his or her business on the mobile phone but she/he must be focused on the 'here and now'. If, on the other hand, you want to make the most of this space to bring out the autonomy of the child, the parent must be taught not to intervene with suggestions or help from behind the scene, in a nutshell he must not replace the patient himself: often the therapist does not care if the child is giving the wrong answer or cooks a perfect cake, do not be afraid to show a different image of your child because this behavior could compromise the therapeutic value of the session. Often children are going to outpatient therapy sessions thanks to grandparents or babysitters, these emergency sessions can therefore prove to be an unmissable opportunity to better understand parent-child interaction in a family environment, and also to have the right time and space to allow the therapist to speak with the parent. Listen to the therapist's advice to support the child in his autonomous participation and to let him experiment, finally with his games and in a favorable and safe environment: this period can bring out unexpected resources both in the child and in the parent! And remember to ensure the home environment safety: corner protectors and non-slip socks become mandatory for houses that in few hours turn into gyms, classrooms or clinics.
10. Every person you meet is fighting a battle you know nothing about. Be gentle. Always. Especially now and especially in front of a screen, remember that everything is temporary and we will soon return to our habits, after acquiring more skills. Give yourself a few lazy breaks and enjoy quality time during these crazy times, moms and dads. Understand that even for the therapist, the remote session is a novelty, perhaps not sought and not always conducted with the best equipment. You are doing an extraordinary job at home and your child will continue to thrive thanks to you and to this new challenge! Consider what you have as a gift and what you miss as an opportunity to improve.
For those families who have not yet started tele-rehabilitation sessions, take advantage of the suggested adapted motor activities, occupational therapy and physiotherapy exercises, video interviews with experts on the dedicated channel #fightthevirus: https://www.fightthestroke.org/fightthevirus
Milan, 10th of April, 2020