Abstract
In this study, we examined the effectiveness of a community-based, occupational therapy intervention situated within an intensive comprehensive aphasia program (ICAP). Occupational therapy interventions addressed goals of participants with chronic stroke and aphasia for improving their satisfaction with and performance of instrumental activities of daily living, social participation, leisure, work, and volunteer activities. Over 3 yr, 19 people with chronic stroke and aphasia participated in a month-long, intensive, interprofessional, community-based program. Significant improvement in participation in valued activities was demonstrated on the Canadian Occupational Performance Measure (p < .01), goal attainment scaling (p < .01), and two domains of the Stroke Impact Scale (p < .05). We conclude that occupational therapy using collaborative goal setting and problem solving as part of an interprofessional team may be an important component to include in ICAPs to address functional participation goals.
Stroke is the leading cause of adult disability in the United States (Sacco & Dong, 2014), with 2.8% of the adult population affected each year (Go et al., 2014). Although 10% of people experiencing stroke report that they recover almost completely, the majority live with mild to severe impairments that affect participation in daily life (see National Institute of Neurological Disorders and Stroke, 2017). More than half of people who experience a stroke are left with physical disabilities, and at least 15% experience aphasia (Hilari, 2011). People with aphasia poststroke engage in fewer social activities than people without aphasia and are less satisfied with their social interactions (Cruice, Worrall, & Hickson, 2006).
Studies of people with chronic stroke, characterized as greater than 6 mo poststroke, have highlighted the idea of occupational gaps, defined as activities that people want to do that they are not doing. This population has reported occupational gaps in instrumental activities of daily living (IADLs), social activities, leisure activities, and work-related activities (Eriksson, Aasnes, Tistad, Guidetti, & von Koch, 2012). People with aphasia poststroke have reported that although physical functioning and health goals are addressed during rehabilitation, their goals regarding social participation, leisure, work, and volunteering are not addressed (Worrall et al., 2011).
Through community-based rehabilitation, people with chronic stroke can increase activity level (Hartman-Maeir et al., 2007), satisfaction with leisure and other valued activities (Desrosiers et al., 2007; Egan, Kessler, Laporte, Metcalfe, & Carter, 2007; Hartman-Maeir et al., 2007), and satisfaction with community integration (Mayo et al., 2015). This body of research suggests that community-based intervention can be successful in filling occupational gaps for people with chronic stroke.
The Transtheoretical Model of Change (Prochaska & DiClemente, 1982) provides a way of thinking about readiness for behavior change. Often, people poststroke are initially at the preparation or action stage for basic activity of daily living (ADL) and IADL goals, which is reflected in the focus of early stroke rehabilitation, whereas they are not usually ready to focus on other areas of occupation such as leisure or work (i.e., precontemplation stage of change for these areas). As they progress and accept the impact of their changed abilities, people living with chronic stroke may become more ready to address goals beyond basic ADLs and IADLs.
We developed a program that supports participants to take action related to leisure, social, and work goals. In addition, Bandura’s (1977) Social Cognitive Theory provides a framework to understand the influence of social situations on behavior change and self-efficacy. Considering the occupational gaps in people with chronic stroke and aphasia, this population may avoid a new activity for fear of being unable to do it or not knowing a modification that may make it possible to perform the activity. We posited that the positive influence of a group would improve participants’ self-efficacy to try new activities and be successful with them.
In the current study, we examined the effectiveness of a community-based, occupational therapy intervention situated within an intensive comprehensive aphasia program (ICAP) to address personal goals of improving IADLs, social participation, leisure, work, and volunteer activities for people with chronic stroke and aphasia. ICAPs must target impairment and activity or participation levels of communication and provide at least 3 hr of speech therapy per day over at least 2 wk. The cohort of participants starts and ends the program at the same times (Babbitt, Worrall, & Cherney, 2015). Participants in ICAPs have had considerable improvements in both language impairment and participation measures (Babbitt et al., 2015). Typically, ICAPs focus solely on speech; however, in the current study, we included an interprofessional team consisting of occupational therapists, physical therapists, speech-language pathologists, and nutritionists. We aimed to answer the following question: Does participation in a community-based, occupational therapy intervention situated within an ICAP increase participants’ satisfaction with and performance of occupations?
Method
Research Design
A within-subject research design (Carter & Lubinsky, 2016) was used to investigate the effectiveness of an intensive, interprofessional, community-based program for people living with chronic stroke and aphasia. University faculty from the departments of occupational therapy, physical therapy, nutrition, and speech-language pathology, along with students from each of these professional programs, were involved in all aspects of the ICAP. In this article, we describe the occupational therapy intervention and outcomes from 3 yr of the program. The university’s institutional review board approved the research proposal, and all participants provided written consent.
Participants
Applicants were recruited by speech-language pathologists through the university’s Aphasia Resource Center and local networking. Participants were eligible if they (1) experienced a stroke >6 mo before the study, (2) presented with aphasia secondary to a single stroke, (3) were able to manage elevator and bathroom needs independently, (4) could understand and follow simple directions, and (5) were willing and able to participate in a full-day program.
Outcome Measures
The Canadian Occupational Performance Measure (COPM; Law et al., 2008) is a semistructured interview that guides people in prioritizing daily challenges. Participants rate performance and satisfaction of their top five challenges on a Likert scale ranging from 1 (poor/low) to 10 (good/high). The COPM has been shown to be a valid assessment with good test–retest reliability of performance and satisfaction ratings (Carswell et al., 2004; Cup, Scholte op Reimer, Thijssen, & van Kuyk-Minis, 2003).
The administration of the COPM was adapted on the basis of previous studies exploring the unique communication needs and effective modifications to assist adults with aphasia to participate in outcome measures (Rose, Worrall, Hickson, & Hoffmann, 2011; Tucker, Edwards, Mathews, Baum, & Connor, 2012). Pictures of adults participating in various activities were used as a visual support. Rating scales were provided in large print with visual icons representing high and low abilities, and the phrasing of the questions was simplified.
Goal attainment scaling (GAS; Kiresuk, Smith, & Cardillo, 1994) was added during Years 2 and 3 as an outcome measure. It includes defining a set of unique goals with a range of potential outcomes ranging from 2 to −2, with 2 indicating more than the expected outcome, 0 the expected outcome, and −2 the current status (Table 1). Improvement considered clinically meaningful for GAS has been defined as a score equal to or greater than zero (Steenbeek, Gorter, Ketelaar, Galama, & Lindeman, 2011). GAS scores can be converted to t scores to be used for measuring change in individualized goal achievement across a group of participants (Kiresuk et al., 1994). GAS has been shown to be a valid and reliable outcome measure in rehabilitation with moderate to high construct validity (Vu & Law, 2012). At least three goals were scaled for each person.
Goal Attainment Scaling Example
The Stroke Impact Scale (Version 2; SIS; Duncan et al., 1999) is a self-report assessment that measures a person’s perception of the impact of a stroke on his or her health and life within eight domains. Scores range from 1 to 5, with higher scores indicating more positive responses. The SIS has been shown to be reliable and valid in stroke populations (Duncan et al., 1999). Participants completed the SIS after baseline testing and after program completion, with family assistance, as needed.
Intervention
Participants engaged in therapy sessions for 6 hr per day, 5 days/wk, for 4 wk. The interprofessional team collaborated throughout the day and during weekly meetings, intervention sessions, and community outings. Because of this regular and close communication, each professional was able to help participants generalize strategies learned from the other professionals. For example, physical therapists benefited from speech-language pathologists’ input in developing written home exercise programs, whereas during lunch, nutritionists knew to encourage participants to use strategies taught in occupational therapy to open containers and water bottles.
Occupational therapy was provided in both group and individual format, typically for 1–1.5 hr daily. Variation of the schedule from year to year was based on individual and cohort needs and goals. An occupational therapist and two occupational therapy graduate students led each group session. Group and individual occupational therapy sessions focused on IADLs, leisure, social participation, and work or volunteering, and they emphasized the use of problem-solving techniques. Participants set specific goals, brainstormed possible strategies to achieve the goals, trialed the strategies, and evaluated the results of the trial. Some strategies were compensatory, such as using a checklist to remember steps of a task, whereas other strategies were adaptive, such as using recipes that included photographs and large print.
Individual occupational therapy intervention focused on the participant’s goals, such as learning to knit one-handed, applying for volunteer opportunities, and learning to use video call technology to support social participation. Additionally, several occupational therapy sessions were jointly led with professionals from other disciplines. For example, during cooking interventions, nutritionists worked with participants to pick healthy recipes, whereas occupational therapists facilitated group members’ participation during cooking tasks. At other times, multiple professionals worked on a shared goal, such as dining out. Nutritionists worked to help participants choose a healthy meal, speech-language pathologists worked with participants to practice ordering food, and occupational therapists supported participants in accessing public transportation and using adaptive devices. Throughout the program, participants attended community outings, including shopping at the grocery store, visiting a museum, and exercising at the gym. These activities were included to help participants generalize their skills to a community setting, encourage integration of the skills learned across all four professions, and foster community among participants.
Data Collection
Data were collected at four time periods: 4 wk before the start of the program (baseline; Time 1), 1 wk before the start of the program (pretest; Time 2), 1 wk after completion of the program (posttest; Time 3), and 3 mo after completion of the program (follow-up; Time 4). During a 90-min time block, an occupational therapist administered the occupational therapy outcome measures.
Data Analysis
Because of the small sample size, the Wilcoxon signed-rank test (a nonparametric method of data analysis) was used to analyze the data from the COPM, GAS, and the SIS. The Wilcoxon signed-rank test uses a four-step process to analyze data by calculating the difference between each participant’s pair of scores, ranking the absolute values of the difference scores, and then computing the sum of the positive and negative ranks separately (Pagano, 2009). For small sample sizes, this method is able to detect and report quantitative changes. Wilcoxon significance was set at p < .05. We used IBM SPSS Statistics (Version 20; IBM Corp., Armonk, NY) for all calculations.
Results
Nineteen people with chronic aphasia poststroke participated in the interprofessional program in cohorts of 6–7 people over three summers (2013–2015; Table 2). The ages of participants ranged from 32 to 72 yr, with 8 identifying as female, 10 as male, and 1 as neither gender. One participant had considerable health problems and missed a full week of the program. All other participants attended at least 85% of the occupational therapy sessions.
Baseline Characteristics of Participants (N = 19)
Note. SD = standard deviation.
There was a notable positive change in the performance and satisfaction COPM scores from pretest to posttest, and this outcome was maintained at the 3-mo follow-up period (Table 3). Although improvement was noted, because the average COPM performance scores were similar to the average satisfaction scores at each time period (Table 4), further analysis was completed. This analysis revealed that the same score was given on both scales in only 34% of items.
Outcomes on Performance, Satisfaction, Goal Achievement, and Impact of Stroke Across Time Periods
Note. Time 1 is baseline, Time 2 is pretest, Time 3 is posttest, and Time 4 is 3-mo follow-up. ADL = activities of daily living; COPM = Canadian Occupational Performance Measure; GAS = goal attainment scaling; IADL = instrumental activities of daily living; M = mean; SD = standard deviation; SIS = Stroke Impact Scale.
Because of the nature of GAS, all participants start at the same baseline score.
SIS was given only pre- and postintervention (at Time 2 and Time 3).
p < .05.
Means and Standard Deviations for All Outcome Measures at Each Time Point
Note. ADL = activities of daily living; COPM = Canadian Occupational Performance Measure; GAS = goal attainment scaling; IADL = instrumental activities of daily living; M = mean; SD = standard deviation; SIS = Stroke Impact Scale.
Because of the nature of GAS, all participants start at the same baseline score.
GAS scores increased significantly both from pretest to posttest and from posttest to follow-up, suggesting continued progress toward goals after intervention (see Table 3). All participants achieved clinically meaningful change (≥0) on at least two goals.
The SIS did not show notable changes in the total score, but there were improvements in two of the domains: (1) memory and thinking and (2) communication (see Table 3). These domains measure items relevant to skills addressed in occupational therapy, such as “solve everyday problems” and “have a conversation on the telephone.” Although a few other domains showed changes in a positive direction, they did not reach significance.
Discussion
Our findings provide beginning support for inclusion of occupational therapy in ICAPs to increase participation in valued occupations for people with chronic stroke and aphasia. Occupational gaps were addressed for the study participants. Many ICAPs have produced improvement at the impairment level (e.g., naming; Babbitt et al., 2015), whereas ICAPs that included a functional component have shown larger improvements at the participation level (Rodriguez et al., 2013). Therefore, it is not surprising that this study demonstrated improvement in participation because of the focus in occupational therapy on personally meaningful occupations.
This 1-mo program provided 4 wk of therapy for 30 hr per week. Occupational therapy provided through outpatient or home care settings typically occurs 1–3 times per week; yet, these participants, many years poststroke, would not have qualified for reimbursement of any amount of outpatient or home care therapy. The strong interprofessional collaboration in this program likely contributed to the positive results because it ensured that goals were addressed across all disciplines. The group process was another key feature of the program because group members provided one another support, encouragement, peer modeling, and an opportunity for group problem solving.
Setting goals that were personally meaningful supported participants’ desires to continue working toward these goals, even after the program ended. Collaborative goal setting for people poststroke has been found to improve outcomes of intervention (Parry, 2004). This finding was observed in both the GAS and COPM outcomes. We anticipated a positive trend in the COPM scores during the program; however, we were also aware that participants were busy with the program and might not have the opportunity to practice the targeted skills at home. We suggest that the increase in COPM scores from pre- to postprogram reflects an increase in confidence in participants’ abilities to do these activities. It is worth noting that the improvement in COPM scores persisted at the 3-mo follow-up period.
It is not surprising that there was no improvement in SIS scores in the ADL and IADL domains. Of the 10 questions in this domain, 7 focus on basic ADLs, yet almost all participants were independent in ADLs at the start of the program. There was simply no room for improvement on these items. Lack of notable change in the SIS participation domain is possibly attributable to limited time during the intervention period for participants to engage in community occupations. Because this measure was not administered at 3-mo follow-up, there is no way to determine whether a change in this domain would have occurred over time.
There were several limitations to this study. The same occupational therapist who administered outcome measures also was the primary interventionist throughout the program. In addition, eliciting accurate self-report can be challenging with people with aphasia. We used modifications to the COPM to support participants’ comprehension, yet it is still possible that participants did not fully comprehend the question or the scale. Although most of the criteria suggested for using GAS in intervention effectiveness studies were incorporated into scaling goals for this study (Krasny-Pacini, Evans, Sohlberg, & Chevignard, 2016), we did not incorporate an external reviewer with GAS expertise. Finally, the small sample size and the population of participants (i.e., self-selected group, overall high education level) make generalization of our results to other populations difficult.
Future research is needed to isolate which intervention process (e.g., group vs. individual, interprofessional nature of program vs. occupational therapy) is most effective to make gains in participation goals and to determine the ideal dosage and intensity of intervention needed for positive results. Finally, additional research is needed to identify the characteristics of people who benefit most from ICAPs with occupational therapy included (e.g., number of years poststroke).
Implications for Occupational Therapy Practice
The findings of this study have the following implications for occupational therapy practice:
Occupational therapy practitioners should understand that clients’ goals change over time. As people become more adept with self-care, they may be interested in pursuing goals beyond basic ADLs.
People with aphasia can participate and should be included in goal setting.
Adapting assessment tools is an important step to elicit goals and measure outcomes of people with aphasia.
The group process likely supports achievement of goals for adults with aphasia poststroke through support, modeling, and problem solving.
Conclusion
The results of this study provide initial support for the inclusion of occupational therapy in ICAPs. Participation in community-based occupational therapy intervention can improve performance of and satisfaction with IADLs, social participation, leisure, work, and volunteer activities for people with chronic stroke and aphasia. Collaborative goal setting, a group format, the opportunity to practice skills in the community, and interprofessional collaboration appear to be important mechanisms to facilitate improvement. This study demonstrates that people can continue to make significant gains in occupational performance years after stroke.
Footnotes
Acknowledgments
We acknowledge our interprofessional colleagues for their collaboration during this project: Elizabeth Hoover, Anne Carney, Stacey Zawacki, Lauren Ferraro O’Brien, and Tami DeAngelis. Portions of this study were presented at the 2017 American Occupational Therapy Association Annual Conference & Expo, March 30–April 2, Philadelphia, PA. This study is registered under Identifier NCT03096015 at 
.