Researcher says therapists could do more to assist caregivers in treatment
Poor communication can lead to poor results
Rehab therapists sometimes fail to recognize signs that caregivers have personal agendas or difficulties that could result in poor outcomes for the rehab patient.
"I think the thing that is so critical to understand is just how dramatically life changes for the caregiver, as well as the patient," says Barbara Shadden, PhD, professor of communications disorders and head of the department of rehabilitation at the University of Arkansas in Fayetteville. Shadden also is the director of the university’s program in communications disorders and is co-director of the Office for Studies on Aging at the university.
"We know it, and it’s obvious," Shadden says. "But from the outside you don’t realize what that means on a minute-by-minute basis if you’re living with someone with a disability."
For 20 years, Shadden has led a support group for stroke victims and their family members and has developed much of her theory and practice regarding educating caregivers from that work. But she also became a caregiver when her husband suffered a massive stroke four years ago.
"I’ve done research since then that looks at the impact of caregivers’ fatigue and stress on the communication between spouses when one of them has had a stroke," Shadden says.
"The research found that, indeed, when the caregiver self-rated as being more fatigued or more stressed, then the whole nature of the communication changed," Shadden explains. "Essentially, the communication became very goal-oriented as opposed to social and interpersonal, and they talked about what they had to talk through."
Although Shadden specifically examined the role of communication between caregiver and patient when the patient has aphasia, she says similar difficulties arise between all caregivers and patients, regardless of the type of injury.
On behalf of the Office for Studies on Aging, Shadden conducted a survey of the 3,300 employees of the University of Arkansas. Employees were asked to fill out a questionnaire that identified people who were serving as caregivers for adults and asked them how they were handling various aspects of their role.
"We’re still analyzing data, but some of the things you might predict were indeed true," Shadden says. "Folks who were caregivers and employees tended to report poorer health and more specific medical problems and more depression than those who were not caregivers."
Caregivers also reported a greater need for additional services to support them in their caregiving role, including adult day care and support groups, Shadden adds.
Shadden expects the study’s full results to be available by mid-2002.
Meanwhile, Shadden has come up with strategies that rehab providers can use to improve the caregiver’s ability to assist rehab patients. Her recommendations are based on her professional and personal experience as well as her research. Here are some of her suggestions:
1. Focus on the caregiver as part of the bigger picture.
Shadden uses a model that places the caregiver in the center of concentric circles that relate to the caregiver’s immediate social context, communities, and society/citizenship. The model, which was created by another rehabilitation professional with regard to aphasia patients, identifies goals of intervention that include access to autonomy and choices, healthy psychological state, health promotion/illness prevention, adaptation of identity and self-actualization, enhancing communication, and identifying barriers to social participation.
"The model says you can’t just focus on the person in isolation," Shadden explains. "I took the identical model and substituted the aphasia patient for the caregiver or significant other and said that the model applies to that person as well."
Rehab providers need to focus on caregivers as well as patients because caregivers are affected by the patient’s illness and have many of the same concerns about autonomy, health, identity, communication, and social participation.
Although rehab providers traditionally have been too underfunded to provide services that address caregivers’ needs, this is an area that cannot be ignored, Shadden says.
"Even though the whole prospective payment system thing has turned the rehab world upside down, I do think there’s some choice there," she says. "Now is the time when rehab professionals need to be more knowledgeable about the bigger picture, and I would argue that at some stages in rehab, it might be just as important to deal with caregiver issues as with patient/client issues."
Conflicting needs: Independence vs. safety
2. Recognize the conflicting needs of the caregiver and the patient.
When therapists teach caregivers and patients how to improve certain functions and how to work toward the goal of giving the patient greater independence, there is one aspect of this outcome that might be overlooked: The caregiver might not want the patient to achieve certain goals because these would conflict with the caregiver’s own needs.
"There may be conflicting needs," Shadden says. "For example, the caregiver may need to feel that the patient is being watched over and is safe, and the caregiver really needs that for his or her sanity."
On the other hand, the patient might desperately want to be able to function independently because of all of the other losses the patient has endured, she adds.
So therapists need to recognize those dual desires and constantly look at both aspects of this dynamic when they are treating patients.
"And you can’t just evaluate it once, because it changes," Shadden says. "Obviously, some of this comes from my personal experience, and a lot of it comes from the support group I’ve run, but I believe you have to take the temperature of the key players pretty often."
For example, the patient might think his or her most important goal is to begin to drive again because this is a symbol of his independence. Yet, the caregiver/spouse might be afraid of having the patient drive because of the patient’s impaired judgment and physical function, Shadden says.
In this case, the therapist needs to know what each of their goals are and will have to facilitate a discussion between them to work it out.
So a therapist might keep in mind that a caregiver isn’t quite ready for the patient to begin certain activities and that control over choices will be an issue.
With disability, the choices are limited’
"Obviously, the patient has lost control, lost functions and things like that, but so has the caregiver, who in many ways has lost control over spare time and over work-related issues and even emotional control," adds Shadden.
"We each function best when we feel we have autonomy and feel like we have choices, and with disability, the choices are limited for everyone," Shadden explains. "And we know from research that any perceived loss of control has a profound impact on a person’s adjustment."
Such an impact could be physical as well as emotional, which is why caregivers often develop illnesses after they’ve served in the role of providing constant care to a loved one, she adds.
3. Coach, don’t push, caregivers into changes.
The first step is to have a conversation with the caregiver. Begin by saying, "This is what I’m going to be recommending. What kinds of problems does that create for you?" Shadden suggests. "Involve the caregiver in brainstorming, and it’s like reaching a compromise."
For example, suppose an occupational therapist (OT) is working with a stroke patient on safety in the kitchen. The patient has some physical and judgment issues, but the OT believes the patient has reached the point where he or she can take over some of the cooking at home.
Long before the OT makes this specific recommendation to the patient, the OT should involve the caregiver by asking him or her for feedback about any concerns over letting the patient work in the kitchen, Shadden says. "The caregiver might say, I don’t know — the last time she went in the kitchen, she almost burned up the house, and I’m scared she’ll do it again.’"
Then the OT can develop a plan that includes a series of smaller steps by which the caregiver can release a little of that control without giving up all of it. "Help the caregiver understand that it’s not all or nothing," Shadden says.
4. Listen first; report second.
"So many times professionally I’ve gotten the client to the point where he has really communicated effectively with me in the therapy room," Shadden says. "But then I make the mistake of saying to the spouse or caregiver, Okay, this is what he can do now if you just do this, this, and this, and the communication will be good.’"
The mistake is that Shadden had not taken into consideration all of the barriers the caregiver faces with regard to time constraints, poor communication patterns, and fatigue.
"By sending the caregiver home with the message that You too can do what we do,’ I’ve really hung them out to dry," Shadden says.
A better strategy would have been to ask the caregiver if it would be possible for the caregiver to take these steps; if not, find out how many of these steps can be replicated at home.
"Caregivers often can’t reproduce what the therapist has done," Shadden explains. "Typically, it’s going to be a lot harder to communicate with someone who has had a stroke and who has a speech language problem because communication deteriorates when we’re fatigued."
Caregivers might realize that they are supposed to speak slowly and simplify their sentences for the patient, but there will be times when they just want to talk the way they used to talk.
Repeatedly seek caregiver input
5. Repeatedly ask caregiver and patient about their concerns.
"In most rehab, you’re mandated to make contact with the family and document it, but I think that rehab providers need to go into that session ready to listen and not just to report," Shadden says. "We tend to use contacts with caregivers to report on how it’s going."
The caregiver-therapist time would be better spent if therapists were to ask the caregiver how things are going and what their concerns are, she suggests.
This needs to be done repeatedly and over a period of time, Shadden says. "Ask, We know that Mr. Smith has all of these problems; what is concerning you most?’"
The answers might surprise the therapist because the therapist’s chief concern might not be the caregiver’s. For instance, Shadden says she often thinks the patient’s communication problems are the patient’s biggest concern, while the caregiver might say that she is most concerned about transferring the patient to a wheelchair.
6. Use visual scales to assess emotional states.
One technique for assessing the emotional states of patients and caregivers involves using a visual analog mood scale that shows the person a little face with a line below it. The face may portray a happy mood, an angry mood, a stressed mood, a sad mood, etc. The idea is to have the patient and the caregiver separately draw a notch in the line to indicate how much that particular face portrays their current mood.
For instance, a caregiver might indicate on the mood scale that she is scared, and when the therapist asks her about it, she might disclose how sometimes when she’s at home the patient becomes very angry when she can’t understand him, Shadden says. "This lets you know that this issue has to be addressed with the client and caregiver."
The mood scale also could let a therapist know how best to approach a caregiver at a particular time. If the caregiver indicates that he or she is very stressed and unhappy on a particular day, then it might not be the best time to break some bad news about the patient’s progress, Shadden suggests.
Likewise, the mood scales can be used to determine whether certain interventions are working. Scale assessments can be given before and after therapy and interventions to measure progress and change.
"It’s a good way to chart how people are feeling, and it only takes a minute," Shadden says. "It gives you a professional way to open the door to their feelings."
Need More Information?
- Barbara Shadden, PhD, Director of the Program in Communication Disorders, Head of the Department of Rehabilitation, Co-director of the Office for Studies on Aging, Professor of Communications Disorders, University of Arkansas, Speech and Hearing Clinic, 410 Arkansas Ave., Fayetteville, AR 72701. Telephone: (501) 575-4917.
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