CLINICAL EDITORIAL

CLIENT- AND FAMILY-CENTERED CARE: LET’S TALK ABOUT IT!

Written by: TAMARA KITTELSON, MS, OTR/L, ATP/SMS

Client-, patient- and family-centered care is a buzz phrase these days. No matter what you call them, the people with whom we work are the focus of what we do — whether acquiring their first wheelchair or a veteran rider, our ability to focus the process on the individual and their circle of support can make or break it for all concerned.

In the 1980s I was schooled in this concept as an early intervention therapist. My real training began when my youngest child was born, and I found myself in a parent/professional’s no man’s land (see Figure 1). In my sparsely populated state, I knew every child with cerebral palsy within a four-hour radius but was unprepared for the transition to having my own. My colleagues were also unprepared and were not sure what to do with me or my daughter when lightning struck too close to home (our office).

I am grateful now for the doorway into a world not everyone can enter and appreciate. Therefore client- and caregiver-centered care is important to me, and why I am sharing “Eight principles of patient-centered care” adapted to our work in Complex Rehab Technology (CRT).

1. RESPECT PATIENTS’ VALUES, PREFERENCES AND EXPRESSED NEEDS

We must draw our clients into shared decision making. While individuals all have unique values and preferences, not all feel comfortable expressing them— especially in the face of “experts” who are viewed as more knowledgeable. Past experiences with medical professionals may have reinforced this feeling.

2. COORDINATION AND INTEGRATION OF CARE

A person may have a new condition requiring CRT orbe a veteran rider. But everyone needs coordinated care. Communication with all care team members during the evaluation process can alleviate client anxiety and avoid missing key information. This makes our job easier as this information can positively impact outcomes.

3. INFORMATION AND EDUCATION

Second nature information to us may be foreign to our clients. Even veteran riders may not know the latest option or funding changes impacting them and their equipment choices. Education is more than handing over a pamphlet. Clients can participate fully only when fully informed about the evaluation, funding and procurement process – including how their condition will influence equipment selection and use.

FIGURE 1 The author and her daughter, Eleanore.

4. PHYSICAL COMFORT

We can influence our clients’ experience through the evaluation environment. We can help the person and their circle feel comfortable and relaxed, even if the evaluation location is not ideal.

5. EMOTIONAL SUPPORT AND ALLEVIATION OF FEAR AND ANXIETY

Our work can provoke fear and anxiety in clients, however well hidden, impacting their participation in the evaluation and overall experience. They may be sleep deprived or anxious about their condition, what the future holds, finances and acceptance of the equipment. I, if anyone, should have been prepared to accept my daughter’s first wheelchair, but it was a big emotional hurdle.

6. INVOLVEMENT OF FAMILY AND FRIENDS

Caregivers and friends can be "family," in addition to legal relatives, and may understand dynamics others are missing. Include them and their ideas in the process, if possible. Even if different choices are made in the end (compared to equipment recommendations made without their input), all parties will be more open to future use and care of the equipment. Families are in it for the long haul – comparatively, we are not.

7. CONTINUITY AND TRANSITION

Follow-up visits give opportunity to see how the equipment is working in the natural environment and provide maintenance/repair information. Red flags should trigger check-ins before small problems become big ones — you may have done this at delivery, but so much happens on that day that important information can be forgotten, missed or misunderstood.

8. ACCESS TO CARE

Where I reside, much of the population lives hours away from a CRT supplier and a knowledgeable wheelchair clinic therapist. Yet people must know how to get the help they need when they need it. If distance is an issue,self-sufficiency is crucial. Educate the client and caregivers about monitoring/tightening loose bolts as prevention of bigger problems. Recognizing problems and calling for an appointment early can avoid a mobility crisis that brings life to a standstill.

Team building with clients and families is the way to go —honing these skills has its rewards in relationship building and improved outcomes!

CONTACT THE AUTHOR Tamara may be reached at TAMARALKA@GMAIL.COM

REFERENCEHTTPS://WWW.ONEVIEWHEALTHCARE.COM/BLOG/THE-EIGHT-PRINCIPLES-OF-PATIENT-CENTERED-CARE/

Tamara Kittelson is an occupational therapist and ATP/SMS. She directs Posture 24-7 and Eleanore’s Project, promoting 24-hour posture care management and appropriate seating and wheeled mobility provision in low resource settings. She has presented on these topics nationally and internationally. Kittelson works part-time for Moving Mountains Therapy Center in Missoula and has served children and adults in Montana with complex neurodisabilities since 1983. She credits her daughter, Eleanore, born with cerebral palsy and profound deafness, as her best teacher.