communicATor

As an occupational therapist and assistive technology specialist, I have worked in the field of Complex Rehabilitation Technologies or CRT for most of my career. These technologies are the most complex, expensive, and customizable devices, such as highly adjustable wheelchairs, seating systems, and other mobility aids. My experiences taught me how valuable and life-changing CRT can be for those who need it. I also learned how devastating the impacts are when people with mobility impairments do not receive appropriate CRT for their needs or when their CRT is not working or functioning properly.

As an experienced clinician, I was feeling frustrated about the challenges of providing quality care in this area. In 2019, I chose to return to graduate school and pursue my PhD, led by a desire to advocate for change in the field. This motivated me to focus my research agenda on an important aspect of quality care known as person-centered care (PCC). Person-centered care occurs when the health care team focuses on client choice, listens, and communicates well, considers their comprehensive needs, and works together with the client to make decisions. While it is a key component of quality care, it can be time-consuming to deliver.

To study the factors that influence person-centered care during CRT services, I decided to study the clients and their caregivers in their natural settings. This type of study, called an ethnography, tries to understand how people interact, think, and behave in real-world settings. As part of the study, I spent two years in a CRT clinic. During that period, I observed interactions between health care providers, clients, and their caregivers during CRT appointments and other day-to-day activities, and I took detailed notes of these observations. I also studied the existing research on best practices and PCC, and I conducted numerous interviews with clinicians, clients and their caregivers, and CRT suppliers.

Challenges in Providing Person-Centered Care

After collecting data from this two-year experience, I analyzed my findings to identify patterns and themes, and I compared my findings to existing theories about healthcare delivery in the research literature. In this process, I learned a lot about the challenges of providing PCC in this field.

The healthcare system in CRT provision does not naturally support a person-centered approach. Instead, service providers face strong pressures to limit client choices, rush service delivery, skip important steps, and stick to rules and policies even if they are not in the client’s best interests.

Balancing PCC with Business Pressures

While most service providers expressed a strong desire to provide person-centered practices and believe it leads to better client outcomes, they struggle to balance this desire with pressures to be profitable, run a stable business, respect company rules, and follow payer policies. Many healthcare providers are frustrated and often feel stuck or pulled in different directions by these pressures, placing them at risk for burnout. One healthcare provider explained these challenges during an interview, stating, “...There's nothing more rewarding than being a part of a good outcome. I care about […] my customers, but it is wearing on us when our hands are tied and we can't help them in the ways that we want to.”

The Costs of PCC

Person-centered care is happening; however, it comes with both financial and emotional costs. Some healthcare organizations regularly lose money on services to ensure more time-consuming PCC is provided. Some service providers experience conflicts when they insist on a PCC approach. Thus, healthcare organizations and individuals must be willing to fund the “costs” to provide it.

The Burden on Clients

People who need and use CRT bear the burden of a system that is not set up to support person-centered practices. They face many potential problems when PCC practices are not followed, such as delays in receiving their equipment, getting the wrong equipment, poor outcomes, and poor service provision.

Pathways to Improving Person-Centered Care

While the barriers to PCC are numerous and challenging, my research also showed that some health care providers and organizations are strongly committed to offering a PCC approach. Service providers were more likely to use a PCC approach when they had training about it in school, they felt it was “the right thing to do,” or they believed it would lead to cost-savings in the long run by improving client outcomes.

In the end, my journey to a PhD took more than five years. Through this experience, I learned about the value of research for understanding and explaining complex problems. Before I began this journey, I knew that many barriers stood in the way of providing quality care and a PCC approach. However, it was very rewarding to understand these barriers at great depth through this process. Understanding these challenges is a key first step for change.

Author: Dr. Becky Breaux, PhD

Learn more about how person-centered care is benefiting Colorado clients by visiting our Assistive Technology Clinic website at ucdenver.edu/cide/clinic.