The Nice F-Words for Children with Medical Complexity

Those of us who work with medically fragile children 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 joyful 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, primary and specialty physician visits, polypharmacy, medical equipment, rehabilitation, and care coordination are typical of these children and those of us who occupy their world.²³

Children with disabilities such as cerebral palsy show increased levels of sedentary behaviors and decreased physical and skill-based activities.⁴ so the Center for Disease Control and Prevention together with the World Health Organization strongly promote physical activity for these adults and children.^{5, 6} Current guidelines recommend that children and adolescents with disabilities engage in sixty minutes of moderate to vigorous physical activity daily.^{5, 6, 7, 8}

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

Since its adoption by the World Health Organization in 2001, the ICF has served as a health framework, recognizing that each individual’s functioning and disability occur within the context of personal and environmental factors.^{14, 15} The 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 improve physical activity and offer skill-based opportunities to CMC. However, to do so safely, effectively and successfully, we must recognize that the dual supports of human assistance and adaptive equipment will be necessary. With this in mind, here is how I would characterize the F words for CMC.

Physical aptitude for body functions and structures

For CMC, fitness involves any movement or postural control while performing light physical activity. For example, an initial expectation may be that a child initiates and maintains head postural control while cycling in an adaptive cycle for five minutes. Over time, progression of physical activity can lengthen the maintenance of postural control, extend postural control to the thoracic region, or increase cycling duration.

Function for activity

For CMC, function often takes 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 broader functional activity. For example, assisting with standing during a transfer or toileting activity rather than having caregivers lift or place him or her in a supine position.

Friends for participation

The core of participation for all children is participating in activities with their peers. It is important to think carefully about designing activities at home, school, and in the community that encourage the participation of children with medical complexity. For example, using adaptive bicycles to travel between home and school with neighborhood children, using a gait trainer to enable walking during participation in a school play with other students, or joining a community soccer game with peers of equipment.

Family for environmental factors

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

Fun! Due to personal factors

While it may seem obvious, 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 doctors, all our attention is focused on how today’s intervention will affect tomorrow’s results.

Bring the message home

So to put it all together, I would capture the F-word continuum like this: Physical aptitude + Function + Friends + Family + Fun It will encourage a happy and healthy life. FUTURE for children with medical complexities.

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