Giving Clients & Caregivers the Room to Be Human

caregiver holding hands with patient

HOLDING HANDS: DEPOSIT PHOTOS/FIZKES

To understand why clients and caregivers don’t always follow through with the recommendations given by their Complex Rehab seating teams, be honest: Do you follow all the advice your dentist gives you during checkups?

Angie Kiger, M.Ed., CTRS, ATP/SMS, is the Clinical Strategy & Education Manager for Sunrise Medical. She believes that as the seating team prioritizes clinical goals, they also need to know what clients and caregivers face every day.

“The importance of building rapport with the client: That to me dictates a lot on where you’re going to go and where your priorities are,” Kiger said. “Because custom complex rehab is shaped to the individual, as a clinician you’re trying to take measurements, you’re looking at the diagnosis, you’re looking at coding… and what’s going to truly make or break you is what happens in the real world with that client.

“It’s like when you go to the dentist and your dentist says, ‘Have you been flossing?’ And you say, ‘Absolutely, three times a day.’ But you don’t say for how many days. You can create the most therapeutic, most supportive seating system ever. But if your client doesn’t understand or buy into why they need to be seated and positioned properly, or their caregivers don’t understand, then what you’re doing is kind of futile.”

That disconnect can lead to equipment that isn’t used optimally.

Kiger said, “When you talk about seating functions — and you talk about tilt and recline in particular, which a lot of people focus on for pressure relief to prevent or decrease the possibility of contractures or pressure injuries — you say, ‘We recommend this.’ But those specific functions are only as good as the person who actually does them.”

What Is the Reality?

So how can a clinical team learn about clients and caregivers well enough to build seating that will be used consistently?

“It’s not necessarily a standard form or data evaluation process,” Kiger said. “You have to really balance everything. I have to find out: What is the reality? What is actually going to happen? I’d rather understand that and recommend equipment that they’re more likely to use.”

Here, Kiger added, is where seating decisions can get controversial. If you believe the “best” seating system is the one that’s consistently and correctly used, then the best system isn’t necessarily the most complex one. Sometimes, getting clients to consistently and correctly use a seating system requires compromise.

“I may not get 100 percent of what I personally believe to be the best solution for the client,” Kiger said. “However, I’d rather have, say, 80 percent and actual usage of the system] than zero percent. If I recommend what I want and I believe it’s the best of the best, but the caregiver or the end user says, ‘I don’t want to use it,’ and they continue to use their old seating system or their old device, then how is that helping?

“Why wouldn’t they use what we believe to be clinically most appropriate? Most of the time from the end users and caregivers, you’ll hear it’s not practical or it’s not functional.”

Nice to Meet You

Kiger described herself as a visual learner who enjoys connecting with clients and colleagues. Those traits are helpful in the equipment decision-making process.

“Unfortunately due to things such as requirements funding and productivity standards mandated by employers, it’s like ‘Go, go, go, gotta check these boxes,’” Kiger said. “I tell people: You need to look in someone’s eyes and talk to them. Because if you’re just looking down and checking boxes on your evaluation or order form, you aren’t necessarily reading the non-verbal communication from the client. Make the time to find out what their day-to-day living is like.”

As Kiger asks questions, she’s collecting clues: “’What did you do this weekend? You went hiking? Awesome, which trail did you go on? That’s a rocky trail, how did you handle that? You took him out to eat? What’d you have, how was it? Oh, yeah, I’ve been there before.’ As you’re talking with them, you’re picturing the restaurant and the texture of what they’re eating, and understanding what’s important to them. ‘How often do you go to that restaurant? Every Friday night?’ So you know that for this family, going out to dinner is important.”

White Coat Syndrome can prevent clients and caregivers from being frank about their concerns. So being observant is key. Kiger recalled a clinic appointment with a young girl and her father.

“I was there on a power mobility evaluation, and Dad just carried the child in,” Kiger remembered. “I said, ‘Talk to me about the wheelchair she uses at school or at home.’ They had a tilt-in-space wheelchair. I said, ‘Awesome, do you have it with you today?’ And he said, ‘We do.’ I said, ‘Can I help you bring it in? I know you came today without your wife, so I’m happy to help you.’ And he took a deep breath and said, ‘Sure.’

“So we go out to his car, and it is a four-door sedan with a folding tilt-in-space wheelchair inside. He had taken off the seating system and wedged it into the trunk. The frame was somehow folded and shimmied in beside the young lady’s adaptive car seat. As he was taking it out, he said, ‘We just do not bring this thing out that much.’”

Kiger wondered how often the little girl used her tilt-in-space wheelchair, since her parents found it so difficult to transport.

“Dad said, ‘We have a stroller she still fits in.’ I was assuming, based on her age, that it was something off the shelf, maybe an umbrella stroller that Mom and Dad put her in.”

Though a standard stroller wasn’t as beneficial for the child as her custom-fit wheelchair, Kiger said she understood why some clients and caregivers don’t follow the seating team’s recommendations.

“I say, ‘We really want you to go with this specific seating system because it could decrease the likelihood that in five years, she may develop contractures,’” Kiger noted. “And the parents are thinking, ‘Five years down the road? I have to worry about five minutes from now, when I have to get her in the car and take her to school.’ For people with disabilities, it’s the here and now. They don’t necessarily have the luxury of thinking about down the road. If it’s someone who has a degenerative condition, like muscular dystrophy or ALS and they could pass away, they might not want to think about that. But also it’s just too overwhelming to think about what’s going to happen when that child is older, or when the caregiver is older and physically has to take care of their spouse.”

All Things Considered

CRT can require compromise. Sometimes that means choosing seating systems that clients and caregivers can manage well in daily conditions.

“Be mindful of what’s going on,” Kiger said. “The therapist and the supplier have to really understand the entire picture. It’s not just about the measurements and ‘This could potentially prevent a pressure injury.’ Yes, it could. But if they have multiple caregivers and they’re not putting that cushion in properly or they’re not positioning that headrest appropriately… this is devil’s advocate, but if you went with something a bit simpler to use, could you decrease the potential of a different sort of injury happening?”

Kiger recalled the introduction of two seating systems for Sunrise’s Zippie Voyage, a stroller-style wheelchair for kids. The first system featured complex positioning elements; the second was more moderate in its positioning features.

“When we presented the moderate seating to our clinical advisory board, I remember a gasp in the room, like ‘Why are you going down this road?’” Kiger said. “Then I remember one of the therapists spoke up: ‘I like this. It’s a happy medium. I have some parents who see this more clinically styled seating and don’t want their kids to look clinical. It’s too complicated for them to get those laterals in the back and for them to make adjustments. But with the moderate seating, I can get them positioned pretty well. It’s not everything I want clinically, in the ideal world. But I’m positioning them pretty well, and they’re going to be happy and functional. And I know Mom and Dad can use this version better and will be more inclined to use the Voyage as opposed to an umbrella stroller from a department store.’”

Kiger pointed out that some clients and families are fine with highly complex systems: “There are some parents and end users who can absolutely handle the most complicated of complicated things: ‘Yup, we got it.’”

But Kiger also remembered a client from a group home who showed up to clinic with a thoracic lateral mistakenly positioned at his thigh.

“The family of someone who has severe disabilities is getting these instructions just on their seating and positioning,” she noted. “Think about what they’re getting from the orthotist, from the dietitian, from the speech therapist, from their respiratory therapist because the child might be on a ventilator.

“More seating systems are becoming easier to deal with and more practical. That’s nice to see as an industry.”

Ultimately, Kiger said, the ideal seating system provides beneficial support and positioning while also fitting well into a family’s everyday lifestyle and environment.

“I really do buy into ‘Improving people’s lives,’” Kiger says of Sunrise Medical’s tagline. “I want them out there, living life. That’s the ideal: We don’t want them to have to think about it. We want them to get into their chairs joyfully.”