Education of people who have had a stroke and their carers may facilitate their understanding, adjustment, and ability to make informed decisions. The purpose of this study was to develop and evaluate a computer-generated individualised written education package for patients following stroke and their carers. The study consisted of three phases. The aim of Phase 1 was to determine current practice in the provision of written information to patients following stroke and their carers and examine their informational needs. The aim of Phase 2 was to develop and pilot a stroke education package and supporting database that would provide patients who have had a stroke and their carers with computer-generated stroke education material that is well-designed and tailored to their informational needs. Phase 3 used a randomised controlled trial to primarily evaluate the effectiveness of the tailored education package on the outcomes of knowledge about stroke, self-efficacy, anxiety, depression, perceived health status (patients only), satisfaction with the content and presentation of the information received, and desire for additional information in patients and carers following stroke. A secondary aim of Phase 3 was to evaluate the effect of written information on the outcomes of knowledge about stroke, self-efficacy, anxiety, depression, and perceived health status of patients following stroke and on knowledge about stroke, self-efficacy, anxiety, and depression of their carers.
In Phase 1, interviews were conducted with 57 patients and 12 carers in a stroke unit, prior to discharge. The written materials received were evaluated using two readability formulae and a suitability assessment. Follow-up interviews were conducted with 49 patients and 9 carers six months post-stroke and examined the same issues that were explored during the hospital interviews.
Thirteen (22.8%) patients and five (41.7%) carers reported receiving written information while in hospital and 3 (6.1%) patients reported receiving written information between discharge and the follow-up interview. At the hospital interview nearly all participants, 52 (91.2%) patients and 12 (100.0%) carers, wanted more information about stroke. At the follow-up interview, 37 (75.5%) patients and all carers wanted more information. No two participants wanted to receive information about the same combination of topics. At both interviews, participants had a clear preference for receiving information in written form. The average reading level of the written information that was received was grade 11 compared to the patients' mean reading ability of 7th-8th grade. Aphasia was the only stroke-related impairment that had a significant influence on patients' reading ability at the time of hospital admission.
In Phase 2, a system that produces computer-generated tailored written information for patients and carers was developed and piloted with stroke rehabilitation health professionals, patients, and carers. The system contained 34 optional topics about stroke, with scope for choosing detailed or shortened versions and font size of the printed information. The education package was written according to recommended principles for the design of effective written education materials. The readability level of the package was grade 7 according to the SMOG readability formula and grade 5 according to the RIX readability formula.
Phase 3 participants were 133 patients who had been admitted to a stroke unit and 17 of their carers. Participants were randomly assigned to either the intervention group, which received the tailored education package, or the control group, which received standard written information. Data on knowledge about stroke, self-efficacy, anxiety, depression, and perceived health status (patients only), were collected pre-intervention, prior to patients' discharge from the unit, and post-intervention, at three months post-discharge. Data on satisfaction with the content and presentation of the information received and desire for additional information were collected post-intervention.
Patients and carers in the intervention group were significantly more satisfied with the presentation of the written information received (patients, p < .001; carers, p = .01) and significantly less likely to desire additional information post-intervention than those in the control group (patients, p < .00 1; carers, p = .01). Patients in the intervention group were significantly more satisfied with the content of the written information received than patients in the control group (p = .003). There were no statistically significant differences (at p≤.01) between the groups for the other outcome measures for either patients or carers.
From pre-intervention to post-intervention, patients, regardless of group, demonstrated statistically significant improvements in knowledge about stroke (p < .001), one section (self-efficacy to manage the disease in general) of the self-efficacy scale (p < .001), and three components (change in health, social support, and quality of life) of the perceived health status measure (all p < .001). Patients also showed a statistically significant decline in one component (physical fitness) of the perceived health status measure (p < .001). There were no statistically significant changes in carers' knowledge about stroke, self-efficacy, anxiety or depression from pre-intervention to post-intervention, regardless of group.
The failure of the tailored education package to produce statistically significant improvements in knowledge about stroke, self-efficacy, anxiety, depression, and perceived health status may have reflected the lack of verbal reinforcement of the written information and the inadequacy of providing written information on only one occasion and only prior to discharge. Factors such as low power and sensitivity of the some of the outcome measures used were identified as limitations in this study and may have impacted on the results. Recommendations for future research were proposed, such as supplementing tailored written education materials with verbal reinforcement of the information both when the information is provided and after the patient is discharged, and providing tailored written information that is highly individualised according to each individual's situation and needs and provided on multiple occasions.