Donna, a 50-year-old university professor, has severe aphasia, profound word-finding problems, and apraxia of speech since a stroke five months ago. She lives at home with two college-aged daughters and her husband, Richard, an engineer. Donna can't read, converse with her husband, work or parent her daughters. She wants desperately to return to teaching, and her family is doing all they can to help her regain speech.
They have labeled most objects around the house, hoping these words will help Donna speak again. Richard, after reading articles about constraint-induced language therapy, believes Donna will regain speech most quickly if the family allows her to communicate using only spoken words. Donna naturally attempts to use gestures and—because she is a talented artist—drawings to communicate, but her husband and daughters insist she speak instead. Despite these efforts, Donna's progress is slow. The family wants to remain optimistic, but they are frustrated.
Many of us have had patients like Donna: highly motivated, with a supportive family and willing conversation partners. The family wants the best for the patient, but often aren't ready to accept alternative communication modes. If you encourage the family to adopt techniques that are outside their comfort level, they may resist—leaving the patient struggling to communicate. In this type of situation, speech-language pathologists may want to try the Self-Anchored Rating Scale, an approach to aphasia treatment that:
- Minimizes the family's frustration, uses their strengths and focuses on identifying solutions embedded in their story.
- Avoids dissuading family members from their feelings and beliefs or persuading them that other strategies would be best.
- Uses evidence-based principles.
Over the past 12 years, I have explored a systems approach to aphasia treatment, an approach based on the belief that all families have the knowledge and capacity to create positive change when guided by trained SLPs. The SARS approach, a component of systems therapy, can be useful for linking an SLP's expertise with a family's perspective.
The SARS approach:
- Helps clients and their families see how their beliefs and strengths are critical elements for successful treatment.
- Helps identify reasonable treatment goals.
- Reveals positive change as it occurs and promotes further change.
SARS links the clinician, the patient and the patient's family in a collaborative partnership focused on reaching the family's goals. It involves seven components.
- Invite the family to join in a partnership.
When Donna's husband approached me about treatment, I invited him and his daughters to participate in each session. I explained I needed to understand how they viewed their family's challenges so I could align my intervention with their resources and strengths. My role would be to plan intervention with Donna's family, not for them. At our first meeting, I began by asking family members to describe their understanding of the situation. I acknowledged differences among the family members and focused on where we found common ground.
- Introduce the SARS.
At the first session, the family and I began creating a SARS scale. I drew a vertical line on an open manilla file folder with 10 at the apex, 0 at the base, and the numbers 1–9 spaced evenly in between. Using the family's language, we anchored the scale with a description of their status shortly after the onset of aphasia and recorded that information adjacent to a number they assigned. Sometimes a family assigns a 0 to the description, but often they use 1 or 2, indicating that communication was possible but very difficult. I guided Donna's family to include a description of how she communicated, the challenges family members experienced and how they managed those challenges.
- Identify the family's long and short-term goals.
I began this step with a discussion of long-term goals by posing a question: "What will communication look like when Donna no longer needs treatment?" After the family described an ideal future outcome, we again wrote their descriptions on the SARS adjacent to numbers they selected. Each family member's assigned number became a visual shorthand for his or her expectations in relation to the other members of the family. For example, Donna's husband assigned a number slightly higher than Donna and their daughters, suggesting that he expected a more favorable outcome. I noted this difference in a neutral tone and encouraged the family to discuss their expectations openly. Such discussions help family members calibrate their hopes and accept that more than one outcome is possible.
- Discover solutions that link clinician and family expertise.
After anchoring the upper and lower extremes of the scale, I asked the family to describe their current communication and, again, each person assigned a score. The family and I pointed out communication behaviors we had noted: for example, Donna's use of a gesture to say she was tired and Richard's slower speaking rate when he repeated a question Donna had misunderstood. We included that information on the SARS. This process is the first step in linking the clinician's expertise to the family's perspective. It is a subtle but important step—it signals acceptance of more than one belief about the problem and supports the notion that there will be multiple solutions.
- Create change through small steps.
Next, I acknowledged the importance of the family's long-term goals, bypassing discussion of achievability because most families revise the goals as treatment progresses. I shifted the focus to small steps—short-term goals—by asking what changes they expect to see when communication improves just slightly, by one point—or even half a point—on the scale. Richard said he wanted to hear Donna say more words—nouns and verbs—during their evening conversations. Donna's older daughter, Bea, hoped Donna would say the names of family members more successfully. The younger daughter, Joan, wanted Donna to tell her what she wanted to wear when Joan helped Donna dress in the morning. With the SARS approach, it is important to honor reasonable requests, and only suggest modifications if a request is inconsistent with evidence.
- Give assignments that build upon the family's successes.
I felt we could make progress on each of the short-term goals the family identified, so I worked with them to search for exceptions—instances when they experienced slightly more success. My objective was to link my expertise to their most successful attempts. After writing their goals on the SARS, I ended with an assignment: "This week, I want you to notice anything you do that helps Donna communicate a little better in the situations you've identified." As most families have tried to help in many ways, the key is to give "homework"—called solution-focused assignments—that reveal the family's strengths. We discovered that Joan helped Donna choose clothes by offering two choices (for example, "Do you want to wear pants or a dress?"), saying the most logical response last. Richard explained that looking together at garden catalogs and other text-based materials helped them focus on a topic, and that Donna often could say a word that she saw first in the catalog. Bea agreed, and reported that Donna often said words she had read first, such as when they sat together to read a young adult book. Because the evidence suggests partner support is critical for many people with aphasia, I asked the family to pay attention to what action seemed to promote Donna's successful communication. I tracked their answers closely and posed additional solution-focused questions to expand on their successes. For example, because family members noticed Donna could say a word after reading it, we explored ways to use written words to support Donna's daily communication. The family placed index cards and markers in each room of their house so they could always write key words they anticipated Donna wanted to say. They would present words in pairs, with the most likely response presented last. Donna would ignore their incorrect guesses and often she would say a word if it was what she was searching for. Donna and her family agreed that using written words in this way reduced their frustration.
- Recognize that change takes time.
As we repeated the SARS steps over 12 sessions, Donna and her family further revised and refined strategies they would use to support their communication. Ultimately, they adopted the use of whiteboards in three important areas of their home to augment their communication, and they kept an additional board by the back door to use in the garden or during walks. Donna's family also began writing sentences using the words she chose from alternatives they presented, leaving spaces where her intentions were unclear. Her family encouraged her to fill in those blanks with drawings, and everyone celebrated when they collaborated to create a complete sentence.
The evolutionary process—identifying small steps toward goals, giving assignments that fit organically with the family, and following up to expand upon changes—draws on the expertise of all members of the client's support system as well as the expertise of the SLP. Although this approach can be used with individual clients or patients in any setting, it is most effective when family members are able to participate. In Donna's case, her family—who initially wanted to encourage speech by ignoring other attempts at communication—enthusiastically embraced low-tech alternative approaches that helped Donna comprehend and use spoken language. Donna and her family are grateful when they can work together to understand her. They see themselves as partners who all contribute to improved communication. As their clinician, I was especially pleased to see how quickly they adopted low-tech strategies once we discovered where they fit naturally in their typical interaction patterns.