Efficacy, feasibility, and acceptability of in-home stroke education for stroke survivors

Abstract

Barriers to learning after a stroke may prevent stroke survivors from acquiring helpful information regarding stroke prevention and preparedness. The objective of this study was to evaluate the efficacy, feasibility, and acceptability of a novel in-home stroke education program for survivors in the acute phase following a stroke. Study participants completed four in-home education sessions about stroke prevention and preparedness following their discharge home from inpatient rehabilitation. Sessions were designed to be completed within an 8-week period. Sessions were presented with evidence-based teaching methods and could be tailored to individual needs. Participants completed short quizzes before and after each education session to measure knowledge attainment.

Forty-nine participants were included in this study. On average, the program was completed in 10 weeks, or 69.5 days (SD 29.6), and visits lasted 66.26 minutes; 81.5% of participants completed Visit 1, 77.5% completed Visit 2, and 73.5% completed Visits 3 and 4. Statistically significant changes from pretest-to-posttest scores were found for all races and genders and for ages 50–79. There was no significant change in pretest-to-posttest scores for participants over age 80 (n = 3). Results show that delivering a stroke education program can be accomplished, on an expanded timeline. The program was effective in increasing stroke knowledge for participants recently discharged from inpatient rehabilitation following a stroke.

Each year, nearly 800,000 people experience a stroke in the United States, with 185,000 of those strokes being recurrent episodes. In the first year after a stroke, survivors are 15 times more likely to experience another stroke than the general population, and they are twice as likely in the first 5 years post-stroke.¹ Education interventions, which include information about stroke recovery, stress management, healthy lifestyle, and coping and which target stroke risk factor identification/awareness and stroke prevention, are an important component of decreasing the risk of initial stroke, repeat stroke, and stroke-related disability,^2,3 and they have had a significant effect on decreasing stroke occurrence and overall mortality.⁴ Despite the evidence to support the importance of stroke education, a deficit in stroke knowledge remains within populations who may be at highest risk of stroke.^5,6 A majority of stroke survivors and their caregivers report that their informational needs related to stroke, such as the causes and impact, were not met at the hospital or after discharge from the hospital.⁷

Although educational information is typically provided for stroke survivors during the acute phase post-stroke, knowledge retention remains low. Barriers to learning are present almost immediately after a stroke and can include decreased cognition, an overwhelming amount of new information presented during hospitalization, lack of a caregiver, and short hospital stays focused primarily on addressing medical priorities. Even after returning home upon discharge from the hospital or inpatient rehabilitation, stroke survivors continue to face obstacles to education including limited access to community-based programs, lack of cultural and personal relevancy of educational materials, inaccessible formatting of materials, and decreased scheduling availability due to follow-up medical appointments.^7–10 To address these barriers, we developed a stroke education program designed to be provided in the home for individuals with and without caregivers. The purpose of this study was to evaluate the feasibility, acceptability, and efficacy of the in-home education program for stroke survivors.

Methods

Study Design

This was a single-group, pre-post study using data from one arm of a larger, ongoing randomized controlled parent trial. The purpose of the parent study was to examine the efficacy and safety of an enhanced rehabilitation program designed to reduce barriers to independent living in the community for stroke survivors. For this study, we analyzed prospectively collected data from the control group.¹¹ All study procedures were approved by the Washington University School of Medicine Institutional Review Board. Participants provided written informed consent prior to their participation in the study.

Participants

Participants were recruited while inpatient at a rehabilitation hospital in St. Louis, Missouri. Participants were included if they were 50 years of age or older, diagnosed with an acute ischemic stroke or intracerebral hemorrhage, independent in activities of daily living prior to stroke (premorbid Modified Rankin Scale score ≤ 2), and planned to discharge home. Participants were excluded if they had a life expectancy of < 6 months, had significant cognitive impairment (Short Blessed Test score > 10), had moderate-to-severe aphasia (National Institutes of Health Stroke Scale best language score of 2 or more), lived more than 60 miles from St. Louis, or planned to discharge to an institutional setting.

Education Intervention

The goal of the education intervention was to provide evidence-based information about stroke prevention and preparedness. The intervention had one essential component and was supported by two active components. The essential component was the stroke education material that was presented. The materials were developed based on critical topics identified by the National Stroke and American Heart Associations for stroke prevention and preparedness. We combined this evidence-based material into topic areas and divided each topic area into four education sessions. Sessions were designed to include both an interactive presentation on a tablet using visual media and printed handouts in multiple formats (e.g., large-print, high-contrast). Figure 1 outlines the topics covered in each session. Educational materials were reviewed by content experts as well as previous stroke survivors for accuracy and readability.

Figure 1.

Session Overview

Occupational therapists (OTs) providing the education visits were trained in a standardized way using didactic lecture, group discussion, and checkout. The intervention is manualized; the manual is available from the authors upon request.

Two active components supported the intervention. The first was tailoring, a strategy in which an OT presents information in a way that is individualized to the specific needs and abilities of each participant. The information could be delivered in different formats (i.e., written, oral, or both), and the format of the information could be tailored as needed (e.g., large-print, high-contrast). Additionally, the amount of time spent on each topic could be adjusted according to the specific needs of each person. For example, the OT could spend more time on the topic of smoking cessation with participants who were active smokers. Providing education in a tailored way increases learning and long-term retention of the information presented.^12,13 Although the information in the education intervention was standardized, the OT could tailor the depth of the information presented to the individual.

The second active component of the education sessions consisted of the evidence-based teaching methods used by the OT during the sessions. These methods included the use of open-ended questions, teach-back, and lay language.³ In addition to tailoring, these methods work to reinforce knowledge and increase retention. The information discussed in each education session included set educational materials and did not include information that could impact outcomes of the parent study (e.g., community participation or activities of daily living).

Visit Structure

Details of the methods for the parent study have been previously published.¹¹ In brief, participants completed a baseline home assessment with study team members during inpatient rehabilitation. Participants were then randomized to either the treatment or the attention control (education) group. After discharge home from inpatient rehabilitation, participants in the education group completed four education sessions, lasting 60–75 minutes per session, over the course of 4–8 weeks (weekly or biweekly). The duration, frequency, and spacing of visits were designed to match the visit schedule of the treatment group in the parent study.

All sessions were completed in the participant’s home. Each session was delivered by an OT trained to deliver the educational materials in accordance with “Evidence-Based Educational Guidelines for Stroke Survivors after Discharge Home.”³ Education sessions were completed independent of other medical visits. Each session began with 6–7 pretest questions (multiple choice or true/false), followed by a brief review of the prior session (if applicable). Examples of Session 1 quiz questions include: “What are the three Rs of becoming stroke smart?” and “What does FAST stand for?” Sessions included an interactive presentation of information using visual media and written handouts, with the OT tailoring as necessary. The OT incorporated the use of teach-back to assess the participant’s understanding of the topic, asked open-ended questions, and avoided using medical jargon. Once the education session was completed, there was additional time for the participant and/or caregiver to ask questions and engage in further discussion (caregivers were invited to attend sessions if available). At the end of each visit, the participant completed a posttest that contained the same set of questions asked at the beginning of the visit to measure knowledge attainment.

Booster Visits

All participants completed two educational booster sessions at 4 and 6 months post-stroke. Booster sessions were also 60–75 minutes in duration. There was no predetermined list of topics for the booster sessions. Instead, the primary purpose of these visits was to give participants an opportunity to ask questions and receive information pertinent to individual knowledge gaps, interests, and needs. Topics ranged from those already discussed in the initial visits to new areas of interest or concern. Because there was no standardized information presented, pretest and posttest measures were not completed during booster visit sessions.

Outcomes Measurement

Feasibility of the education program was evaluated by examining the percentage of visits completed within the scheduled 4–8-week timeframe and the average length of an education visit. Program acceptability was evaluated by examining the percentage of total visits completed. Finally, to better justify using resources to provide in-home education versus community-based classes, we analyzed community accessibility scores from the Reintegration to Normal Living Index (RNLI)¹⁴; The RNLI measures the extent to which the participant feels they have reintegrated into social activities following a stroke. The variable included in this analysis was Question 2 as a proxy for ability to access community-based programs. Question 2 states, “I am able to move around my community as I feel necessary.” Scores range from 1–10, with 1 meaning the statement “does not describe me at all” and 10 meaning the statement “describes me fully.” Efficacy of the education visits to promote learning was defined as a statistically significant improvement for each participant between pretest and posttest scores at each visit. Learning was measured at each visit, with Visit 1 being “Knowledge about Stroke,” Visit 2, “Effects of a Stroke,” Visit 3, “Reducing Risks of Stroke,” and Visit 4, “Life After Stroke.”

Statistical Analysis

All data were collected and entered into Research Electronic Data Capture (REDCap),¹⁵ a secure, web-based data entry application. Data analysis was performed using IBM SPSS Statistics version 24 software (IBM Corp., Armonk, NY). Participant demographic/baseline characteristics were reported with descriptive statistics for continuous variables, summarized by mean and standard deviation, and categorical variables, summarized by frequency distribution. Efficacy of the education program to improve knowledge was evaluated using the Wilcoxon signed-rank test, as data were not normally distributed. P values were two-sided, and statistical significance was set at P = .05

Results

Participants

Forty-nine participants were randomized to the education group from the parent study. A flow of participant enrollment is displayed in Figure 2. Demographic information is displayed in Table 1.

Figure 2.

Education Group Flow Through

Table 1.

Participant Demographic Information

Variable, n (%) unless specified	Education Group (n = 48)
Age, n (SD)	65.6 (8.6)
Male	27 (56.3%)
African American	29 (60%)
Ischemic Stroke	36 (75%)

Outcomes

Feasibility

Less than half (46.9%) of the participants completed the education program within the allotted 8-week timeline. The average length of time required to deliver the program was about 10 weeks, or 69.5 days (SD 29.6). The average length of each visit was 66.26 minutes. Reasons for the extended timeframe included participant acute medical needs, difficulty scheduling additional visits on top of traditional therapy services, and participants being worn out from adjusting to new routines post-stroke.

Acceptability and accessibility

Of the 49 participants allocated to the education intervention, 81.5% completed Visit 1, 77.5% completed Visit 2, and 73.5% completed Visits 3 and 4. The average score for Question 2 on the RNLI was 3.83 (SD 3.49), indicating low ability to travel around the community as necessary. Reasons for not completing education visits are included in Figure 2.

Efficacy

Participants’ baseline knowledge as measured by the mean percentage of correct answers is displayed in Table 2. A significant difference between pretest and posttest scores was seen for participants for each education session (Table 2). Learning, defined as statistically significant increases in scores from pretest to posttest, in at least one session occurred across all races and genders and for ages 50–79, with no significant change in pretest-to-posttest scores for participants over 80 years (n = 3).

Table 2.

Overall Test Scores (Percent Correct)

	N*	Pretest mean (SD)	Posttest mean (SD)	Asymptotic Sig (2-tailed)
Visit 1	38	50.4 (20.7)	63.6 (21.9)	.004
Visit 2	38	76.3 (19.2)	86.5 (15.2)	.002
Visit 3	33	69.7 (20.6)	79.8 (19.0)	.002
Visit 4	36	68.1 (24.7)	78.1 (22.4)	.009

Note:

^*Test scores were analyzed for those who had completed both the pretest and the posttest for a visit. Across all visits, five quizzes were not completed due to participant refusal or technology error.

Discussion

Individuals recently discharged from subacute hospital stays demonstrated a lack of critical knowledge about stroke despite receiving stroke education during inpatient rehabilitation. Providing a brief, in-home education program can improve knowledge of stroke.The program is accessible, can be tailored to the specific needs of each individual, and can be provided on a flexible timeframe.

Participants in this study demonstrated learning and knowledge attainment, likely for two primary reasons. The first is the accessibility of the program. The sessions were provided in the home and independent of other services received. This is different from other stroke education programs, which are commonly provided in the community. While learning in the classes themselves is typically achieved, overall participation in community-based programs is low⁹ because individuals require transportation to the facility, meeting spaces may be physically inaccessible, and timing of the class may not be appropriate for the stroke survivor.¹⁰ As seen in this group of stroke survivors, according to their RNLI community access scores, access to the community remains a significant barrier. The average score on the RNLI question on community accessibility for stroke survivors further supports the evidence that community accessibility is limited in this group, indicating that delivering education in a way that is easy to access (e.g., in the home) is important. Our program demonstrated that learning of critical stroke information can and does occur in the home, but it remains unclear how to make such a program widely available. Pairing stroke education administered by trained staff with other home health visits such as nursing, therapy, or case management may be considered; however, this may be impeded by financial or insurance constraints. Although the education visits in this study were completed in person, given the recent increase in the use and accessibility of virtual platforms (e.g., Zoom^©16), transitioning community-based stroke education to include a virtual component—eliminating the barrier of community access—is an alternative worth exploring.

Another possible reason learning was achieved was the tailored nature of the stroke education program. Learning in a large, group setting can be difficult for many individuals post-stroke, especially those with significant residual cognitive, language, or sensory deficits.⁷ It is difficult to individualize learning in group settings, and in such settings, those who need information to be presented in an alternative format may be disregarded. By creating a one-on-one stroke education program, such barriers are eliminated, and individualized learning can occur.

Seventy-three percent of participants completed all four visits, with 43% completing the program within the originally planned timeframe, suggesting that the visits are feasible but might need to be delivered over a longer timeframe. The original 8-week timeframe was likely not possible due to the acute medical needs many stroke survivors still have after discharge from inpatient rehabilitation. Many individuals receive therapy, have multiple medical appointments, and are adjusting to a new, and often very challenging, way of life at home. This is consistent with previous evidence indicating that stroke survivors have difficulty scheduling medical appointments because of multiple medical needs.⁸ It was often difficult for participants and their families to coordinate these visits with other services they were receiving.

The visit duration, frequency, and spacing were intended to match the visit schedule of the treatment group in the parent study. While this design was intentional in the parent study for between-group comparisons and is consistent with other stroke education programs,^3,8 it is not consistent with a typical home health visit model. Home health visits are approximately 45 minutes and occur over a 2-month period.¹⁷ In this study, the average visit length was 66 minutes, and visits occurred over a 10-week period. To improve the feasibility of delivering this education as part of home health visits, future studies should examine whether the length of the visits could be shortened and, if paired with existing occupational therapy services, they could be delivered within a 60-day timeframe. Providing education is a typical part of an occupational therapy intervention,¹⁸ so incorporating this stroke education into occupational therapy treatment sessions may be feasible but requires further testing.

The program showed good acceptability. Approximately 73% of education participants completed all four education visits. There were several reasons participants did not complete one or more of the visits, the majority of which were unrelated to program acceptability (e.g., no longer qualified for the study).

Although this in-home, one-on-one program was found to be an effective format for learning, there were several limitations to this study. One limitation was the lack of assessments used to measure behavioral changes after learning, a secondary outcome of an education program. Learning was defined as a statistically significant improvement in scores; it is important to note that it is unknown whether this translates to significant behavior change. Implementing behavior change is what ultimately impacts stroke prevention and preparedness, so further investigation into the clinical significance of the learning that occurred is important.

Due to the small number of participants in this study, trends about what subgroups were more likely to accept the education intervention were not analyzed. Future research should examine a similar program and determine whether acceptability of an in-home stroke education program is higher among certain groups. Additionally, stroke survivors were only included in the parent study if they did not have a significant cognitive or language deficit. Although some participants had mild cognitive or language impairments, this inclusion criterion likely made knowledge retention easier. In future studies, including stroke survivors with a variety of cognitive and language deficits and their caregivers will provide greater insight into the potential benefit of in-home education in these groups.

In addition to potentially shortening the visit length, as discussed above, future research should also explore the implementation of such an education program virtually. With the flexibility of in-home education, these visits can easily be transformed into a virtual format, which may eliminate existing barriers to in-home visits and facilitate scheduling, which would increase the feasibility of the education intervention.

Conclusion

This study found that delivering a stroke education program in the home, on an expanded timeline, was feasible and acceptable, and the program demonstrated efficacy in increasing knowledge in stroke prevention and preparedness. Despite lacking adequate knowledge regarding stroke risk factors and preparedness when leaving the inpatient setting, participants demonstrated learning when information was presented to them in the home in an individualized format. The results of this study are promising and can be used to design stroke education.

Data Availability

Data are available from the authors upon request.