The Nice F-Words for Children with Medical Complexity

For those of us who work with medically fragile children, we have our own set of F words, and none of them are unpleasant. Aligned within the framework of the International Classification of Functioning, Disability and Health (ICF), the F-words for Fitness, Function, Fun, Friends and Family provide a joyous path to rehabilitation and a healthy future for children with disabilities.

Children with Medical Complexity (CMC) are a small subgroup of children with disabilities who demonstrate multisystem impairments resulting in significant functional limitations and participatory restrictions.¹ Frequent and extensive hospitalizations, visits to the GP and specialty, polypharmacy, medical equipment, rehabilitation and care coordination are typical of these children and of those of us who occupy their world.²³

Children with disabilities such as cerebral palsy show higher levels of sedentary behaviors and decreased physical and skill-based activities,⁴ which is why the Center for Disease Control and Prevention together with the World Health Organization strongly promotes physical activity for these adults and children.^{5, 6} Current guidelines recommend that children and adolescents with disabilities get sixty minutes of moderate to vigorous physical activity per day.^{5, 6, 7, 8}

When this is not possible, at least some activity is better than none.⁹ For children with medical complexity, the evidence further supports the use of adaptive equipment to augment and support their activity efforts.^{10, 11} The ultimate goal is to allow children with disabilities to be fully involved and participate with friends in all activities and to increase the child’s social interaction.^{12, 13}

Since its adoption by the World Health Organization in 2001, the ICF has served as a framework of reference for health, recognizing that each individual’s functioning and disability occur within the context of personal and environmental factors.^{14, 15} F-words, developed by Rosenbaum and Gorter in 2012, offer a version of the ICF to apply this framework to the pediatric population.^sixteen Using the F-word philosophy, we as pediatric therapists can enhance physical activity and offer skill-based opportunities to CMC. However, to do so safely, effectively, and successfully, we must recognize that both human assistance supports and adaptive equipment will be necessary. With this in mind, this is how you would characterize the F-words for CMC.

Physical aptitude for body functions and structures

For CMC, fitness implies any movement or postural control while participating in light physical activity. For example, an initial expectation might be for a child to initiate and maintain postural head control while riding a bicycle in an adaptive cycle for five minutes. Over time, progression of physical activity may lengthen the maintenance of postural control, extend postural control to the thoracic region, or increase the duration of cycling.

Function for Activity

For CMC, the function will often take more basic forms. Instead of expecting the child to actively complete an entire functional activity, perhaps the child should be expected to complete only one element of the larger functional activity. For example, helping to stand during a transfer or toileting activity instead of being picked up or placed supine by caregivers.

Friends for participation

At the core of all children’s participation is participating in activities with their peers. It is important to think carefully about designing home, school, and community activities that encourage the participation of children with complex medical problems. For example, using adapted bicycles to travel between home and school with neighborhood children, using a gait trainer to allow walking during a school play with other students, or joining a community soccer game with teammates. .

Family for environmental factors

The family is at the center of the environment in which CMC lives, plays and learns. Each family brings a unique perspective to incorporating F-words into daily life. Therefore, it is imperative that the pediatric therapist recognize this central role of the family in optimizing the health and well-being of these children.

Fun! By Personal Factors

While it may seem self-evident, it is important to remind ourselves that enjoyment provides meaning to activities, and this is essential for safe, effective, and successful intervention outcomes.

Future

In the end, it’s all about the future, which is probably the most important F-word. For us clinicians, our entire focus is on how today’s intervention will affect tomorrow’s outcomes.

Bring the message home

So, to tie it all together, I’d capture the F-word continuum like this: Physical aptitude + Function + Friends + Family + Fun promote a happy and healthy life FUTURE for children with medical complexities.

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