C LI NI CA L E DITOR IAL
THE DEVICE NEEDS TO FIT THE LIFESTYLE — NOT JUST THE CHILD Written by: ROSLYN LIVINGSTONE, MSC(RS), OT
Device abandonment is a problem in assistive technology. Getting the right equipment is only half the battle, but it doesn’t do much good unless it’s useful, and it’s used. I’m sure we can all think of examples from our own practice, where we thought we had done a thorough assessment, taking into consideration all the relevant child and environmental factors, but at the end of the day, the device was not used as planned! Standers (or standing frames) support individuals who can’t maintain an aligned, upright weight bearing position to stand and are widely accepted in clinical practice. However, they are probably the piece of equipment that I have most often seen in a corner with clothes or toys piled on top of them. I was recently involved in reviewing the evidence around use of standers with children and young people with non-ambulant cerebral palsy (CP). The messages that came out very strongly from the qualitative literature were: • Children need choice in where and when to stand. • The standing program needs to be incorporated into meaningful activities to increase function, participation and engagement. (McLean et al., 2023) Holly’s story illustrates how one family successfully integrated standing into their everyday routines. I first met Holly (who had been diagnosed with CP) and her twin brother, Hugh, when they were 12 months corrected age. Holly was able to change position by rolling onto her side and needed support from the trunk down to maintain a sitting position. We set up a recycled supine to upright standing frame from the loan cupboard and recommended using it for an hour each day. It wasn’t fancy but it had a nice big tray for toys and play — see Figure 1. Holly’s parents found the best way to get in the hour of standing was to do it first thing in the morning. As soon as she was dressed, they put her into the stander for an hour to eat breakfast and then play with her twin. Hugh always loved Holly’s equipment and would want to go in it. So, when she resisted going into the stander, Hugh would want to go first. That would make Holly say, “No, it's mine“ and take her turn first! When Holly finished her hour, Hugh would go in for his “turn“ of 5 minutes standing. Now at age 8 years, Holly has a new upright stander, but it is still part of the morning routine. Hugh doesn’t take his turn anymore, but Holly still goes in it for breakfast and now she reads a book
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FIGURE 1
Holly in the supine to upright stander playing with Hugh.
and plays with her tablet for the rest of her hour of standing before she goes to school. The standing frame positions Holly at eye level with Hugh so it’s great for playing video games and dancing — See Figures 2 and 3. The stander also positions her at the same height as the kitchen island and helps her take part in family activities — See Figure 4. For other families, using the standing frame may be harder to work into the home routine, but may be easier at school. A ceiling track lift system or the extra adult assistance may make transfers easier. There may also be more regular and structured opportunities for motivating activities (e.g., gym, art, watching sports) or routines (e.g., taking attendance to the office). Being in the stander can increase visual and/or physical access
