Wednesday, July 9, 2014

On Track

Brennen is a participant in a research study being conducted by CanChild Centre for Childhood Disability Research. The On Track Study is a collaboration involving researchers, therapists, families, and children with cerebral palsy from across Canada and the United States. The aim of the study is to describe the changes in balance, range of motion limitations, strength, and endurance, number and impact of health conditions, and participation in self-care, recreation, and leisure activities over a one-year period in young children with CP aged 18 months through 11 years.

This study will determine how young children with cerebral palsy or gross motor delays progress in many aspects of their physical development and participation in daily life.  The information collected from this study will help therapists and parents monitor if a child is developing as expected in his or her physical development and participation. Then, the health care professionals working with children can use the results of this study to provide the services that are most beneficial and meaningful for each child and their family members.

At our first visit, a physiotherapist assessed Brennen's balance, strength and range of motion. I was given a questionnaire package to complete that asked questions about Brennen, our family, the services we receive and questions about Brennen's fitness, health, self-care abilities, and participation in life activities.

There are three classification systems that are assessed in the Parent Questionnaire.
1. Movement Ability (Gross Motor Function)
2. Hand Abilities (Manual Abilities)
3. Communication Abilities

Each of the three classification systems are to be rated on a five-level scale, Level I being the highest level of functioning, and Level 5 being the lowest.

In the first section, Movement Abilities, Brennen was rated a Level 5: 
Children are transported in a manual wheelchair in all settings. Children are limited in their ability to maintain antigravity head and trunk postures and control arm and leg movements. Assistive technology is used to improve head alignment, seating, standing and/or mobility but limitations are not fully compensated by equipment. Transfers require complete physical assistance of an adult. At home, children may move short distances on the floor or may be carried by an adult. Limitations in mobility necessitate adaptations to enable participation in physical activities and sports including physical assistance and using powered mobility.

In the second section, Hand Abilities, Brennen was rated a Level 5:
Does not handle objects and has severely limited ability to perform even simple actions. Requires total assistance. Children in Level 5 might at best participate with a simple movement in special situations, e.g. by pushing a button or occasionally holding undemanding objects.

In the third section, Communication Abilities, Brennen was rated a Level 5:
Seldom effective sender and receiver even with familiar partners. The person is limited as both a sender and a receiver. The person's communication is difficult for most people to understand. The person appears to have limited understanding of messages from most people. Communication is seldom effective even with familiar partners.

So.. what does all of that tell me? After spending so much time answering question after question in each section with no, no, no, 5, 5, 5, fail, fail, fail.. you'd think I would be more than a little disheartened. In fact, this study isn't telling me anything I don't already know. I know that Brennen is dependent on me for all aspects of his care and daily living. I know that he is an ineffective communicator. I know that he can't hold on to things. The truth is that Brennen requires total assistance with absolutely everything, and he will continue to do so for the rest of his life. This is not new information. I have accepted that, and have come to terms with all that it implies. I'm not always happy about it, but really, being Brennen's Mom has enriched my life in ways I could never have imagined. It is an honour and a privilege, and I couldn't be more proud.

What this study is telling me is that people are trying. Researchers, doctors, therapists and parents are working together to try and create better outcomes for people living with cerebral palsy, and I appreciate that. 

I was informed in the beginning that there would be no immediate benefit to my child or family for participating in this research study, however with the help of a large group of families like mine, valuable information will be gained on how to monitor and provide future services for children with CP or gross motor delays.

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