Home Programs: Empowering the Parents

Posted on April 5th, 2013 by Denise | No Comments

Home Programs:  Empowering the Parents


Denise Koonce OTR

Get up at 5:30 am, prepare medicines, prepare bottle, change baby’s diaper, swaddle, attempt oral exercises therapist gave me, get into the right position, the right light, keep a smile on my face, soft voice, don’t tense up, hold the bottle just right while supporting her cheeks and chin, ( “What if she doesn’t drink enough this feeding, then I have to make up for it in next feed.”), begin feeding,  there’s not much formula leaving the bottle, reposition, give tongue base support, hold her up at least 70 degrees, oops milk went down the wrong way, sit her upright let her cough, (“I hope she doesn’t spit up the 10cc’s she drank.”), calm down, reattempt feeding, she is resisting nipple, rock gently while supporting cheeks and chin, she needs to drink another  20cc, she doesn’t finish, gavage the remaining formula, (“I hope I am doing this right, she has to get better!”) Repeat, Repeat, and Repeat all day, everyday, with little sleep.

Wake him up, carry him to the toilet (50lbs), help him wipe, back to bedroom, help him dress, must put soft clothes on, turn socks inside out, put on orthotics, listen to the cries and complaints about having to wear orthotics and that they don’t feel good, take them off readjust socks and reattempt, then put on shoes, give medicines, find his glasses, fix breakfast and assist him with eating breakfast, assist with brushing teeth because he doesn’t like the way it feels and doesn’t brush well enough, leading to gum and tooth decay, (“Can’t let his teeth get worse and it is so difficult for him to see the dentist.”), place him in wheelchair, make sure straps are correct, wheel him out to meet the bus and see him off to school, rush and get everything else done before school is finished, be back at bus stop and start the afternoon routine.   

These are just a couple of very short examples of moments in the lives of a parent who has a child with special needs.  These examples do not encompass an entire day nor do they include the time needed to make numerous phone calls to schedule doctor, dentist, orthotics, therapy, and other medical appointments or account for the time it takes to go to the appointments.  Parents of children with special needs, on average, have to prepare for more therapies, procedures, testing or surgeries than an average parent of a child without special needs.  They are faced with the possibility of their child experiencing complications not only from the procedures but from simply getting sick.  Also, daily activities may require more time and energy because of the assistance level needed from the parent.   Their role as a parent can be overwhelming and when we come into their home or lives and begin to request, just one more task, they conceptually and physically may find it very difficult to manage.  Even though the parent may understand how important a home program is for their child, they may be unable to comply, despite their desire to do so, simply because they do not have any reserves left to give.  Therefore it is important, as therapists, to be insightful regarding the daily lives of the children we treat and their families.  It is helpful for us to stop and think what it is like to walk in their shoes.    

We as therapists initiate the process towards progress by helping the patient create new neuronal pathways or new muscle actions but it is up to the parent to see that the child does it over and over again through a home program.  Despite all the educational background and training we as therapists bring to a patient, the parent is the one who bears the brunt of ensuring that those new pathways or skills become engrained into their daily lives.  This is because they are the ones who spend the most time with the child excluding their school time.  Home programs are extensions to therapy and are critically important and vital to a child in order to make long term changes, meet goals and make progress.  The parent needs to understand that the therapist alone will not “heal” their child and they as parents are a significant part of the team.  Progress is made during therapy sessions but greater progress occurs when the team is all working in conjunction towards the same goal.  The concept of this effort needs to be initiated from day one when therapist and parents meet so precedence can be set.  

When a therapist begins treating a patient, not only do you begin building report with the patient, but also the parent.  The parent has to learn to trust the therapist through the therapist’s actions and knowledge that is both verbalized and observed during therapy sessions and throughout the child’s progress.  The parent needs to understand and believe that what you are doing and what you are asking them to do will help improve the life of their child.  The therapist must be supportive and provide encouragement so as to empower the parent for their role in the home program. 

Here are some ways to prepare the parent for their role in the child’s therapeutic home program:

*  Educate them during each therapy session while having them observe.

*  After showing them the task or technique, have them demonstrate it.

*  Provide them with handouts or other visual aids including using their cell phone to videotape the task so they can review it as often as necessary for them.

*  Hold them accountable to the home program.  Provide them with a check off sheet so they can document what they have accomplished.  Provide positive feedback each time you see progress in their child towards the goals you have set together as a team during the initial evaluation.   Review areas that seems to be difficult to complete and problem solve with the parent why barriers exist for the items that are not being done.

*  Follow up and review the tasks every session and adjust the home program as necessary.

Home programs have always been an essential part of pediatric therapy but with the changing health insurance environment it is becoming more and more necessary that what we have done all along be documented consistently and intentionally.  We are always growing in our professional lives and the healthcare system will always continue to evolve, so we must continue to evolve and grow with it.  I included only a few ways in how to empower a parent to incorporate and follow through with a home program.   What have you done successfully that made a difference for your patient’s parents?  Please share with us your experiences.

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