BACKGROUND
Although much has been written about the recovery process following stroke, most of the literature focuses on consequences related to neurological impairments, functional disabilities and loss of independence. In the past few years, there has been a better understanding that quality of life is the ultimate outcome against which the effects of stroke interventions should be measured. Stroke survivors report experiencing major limitations in basic mobility, bathing, and household tasks such as housework, meal preparation, and shopping (1). They also describe restricted participation in society by way of transportation difficulties and limited access to meaningful social, recreational, and occupational pursuits (1). Assistive technology (AT) devices are designed to help alleviate many of these impediments to quality of life and seem to be very prevalent in this population. However, it is difficult to find published data on patterns of device adoption and use that are reliable, detailed, and representative of the stroke population. It is even harder to locate information on the quality of life and other psychosocial outcomes associated specifically with AT in stroke. The systematic follow-up of an inception cohort is needed to properly evaluate AT outcomes following stroke (1).
Day and Jutai (1996) developed a measure specifically designed to assess the psychosocial impact of assistive technology, called the Psychosocial Impact of Assistive Devices Scale (PIADS). The term "psychosocial" refers to the impact of assistive technology on subjective perceptions of psychological well-being and quality of life (3).
RESEARCH QUESTIONS
This paper addressed two research questions: (1) What are the relative frequencies of categories of AT adopted within the first few months following a first-ever stroke? (2) What are the patterns of psychosocial impact reported by stroke survivors within the first few months following AT adoption?
METHOD
Subjects. The research participants are 450 individuals who had a first-ever stroke, and are part of an ongoing Canadian inception cohort study of quality of life following stroke. Only those with confirmed initial stroke, either ischemic or hemorrhagic, were eligible. The diagnosis was based on clinical evidence and additional procedures (e.g., computed tomography scans) that eliminated other diagnoses.
Procedure.
The PIADS was designed for completion by current users of an assistive device or devices, although the same scale can also be used to measure the expected impact of a device prior to adoption (3). It is a 26-item self-rating scale. The user rates each item on a 7-point scale that ranges from -3 (maximum negative impact) to +3 (maximum positive impact). The mid-point, zero, indicates no impact or no perceived change resulting from device use. The PIADS measures three important quality of life domains, i.e. three subscales: (1) Adaptability - reflecting inclination or motivation to participate socially and take risks; (2) Competence - reflecting perceived functional capability, independence and performance; and (3) Self-Esteem - reflecting self-confidence, self-esteem, and emotional well being. Each participant in the cohort receives a comprehensive assessment, using a variety of health-related quality of life and functional measures, prior to hospital discharge, at one month post-discharge, and then at 3-month, 6-month and 12-month follow-ups. At each assessment, an experienced interviewer noted whether an assistive device had been acquired since the previous interview, and classified the devices with reference to the categories described in the Tech Act. Participants are asked to rate the psychosocial impact of devices they acquired as a result of stroke using the Psychosocial Impact of Assistive Devices Scale (PIADS).
RESULTS
To date a total of 314 device ratings have been obtained from this cohort. The results presented in the following figures are from a preliminary analysis of the data. Variance estimates are included with mean scores. Statistical analyses have not yet been performed on these data. The relative frequencies of assistive device acquisition in various categories are shown in Figure 1. (Note that, at this time in the study, the precise nature of 44 devices reported by the participants is uncertain. These data are missing from the figure.) Canes account for more than one-third of all devices adopted. The next largest categories are walkers and wheelchairs, which together make up approximately one-third of the total.
Figure 2 depicts the mean PIADS subscale scores at one month post-adoption from users of canes, walkers and wheelchairs. Mean scores were moderately positive for canes and walkers. Scores for wheelchairs were near zero, with variability that suggested that at least some stroke survivors reported a negative impact. The next figure (Figure 3) presents the data from 12 cane users obtained from their 1-month and 3-month post-adoption assessments. The mean scores appear to be stable over time, and cane users seem to show less variability in their ratings with experience using the device. Moreover, there seems to be more differentiation among the PIADS subscale scores over time. Thus far in the study, we have been able to confirm unilateral brain lesion for 20 of the participants (no. left-sided = 10; no. right-sided = 10). Figure 4 shows the mean PIADS scores, averaged across all device categories, for these subjects from their first assessment (i.e., one month post-adoption). There appears to be a clear pattern of positive ratings associated with right-sided lesion and negligible impact reported by participants who had left-sided damage.
DISCUSSION
The findings on prevalence of AT adopted by individuals who survive a first-ever stroke provide reliable, representative estimates for device categories for this population. It should be noted that canes are more likely than walkers and wheelchairs to be associated with milder stroke, although we have not yet performed this analysis of the data. Early in the period following AT adoption, stroke survivors tend to derive moderately positive psychosocial benefit from their mobility devices, with wheelchairs being an exception. We have reported elsewhere that, for persons with neurodegenerative conditions, mean PIADS ratings for wheelchairs are near zero initially but become much more positive over time, with experience using the devices (3). We have argued that the early post-adoption ratings are strongly influenced by the stigma associated with wheelchairs and uncertainty about the longer-term implications for subjective quality of life. The apparent stability of psychosocial impact observed for canes is consistent with the findings from previous studies of eyewear users (4) and users of electronic aids to daily living (5). It suggests that successful AT adoption is defined, at least in part, by improvement in subjective quality of life. The results for side of lesion are intriguing. At this time in the study, we have not determined their relationship with factors such as aphasia, depression, and neglect. For example, recent research indicates that stroke patients with depressive symptoms progress more slowly in achieving functional independence compared with nondepressed patients (6).
ACKNOWLEDGMENTS
This research received support from the Canadian Stroke Network and the Ontario Ministry of Health and Long-Term Care (through the Ontario Rehabilitation Technology Consortium). The authors are grateful to Genevieve Cote Leblanc, Sharon Scovil and Deb Willems for assistance with the data collection.
Address correspondence to:
Jeffrey W. Jutai,
Ph.D.
School of Occupational Therapy
University of Western Ontario
Elborn College, 1201 Western Road
London, ON, Canada N6G 1H2
Tel: (519) 661-2111 ext. 88978;
Fax: (519) 661-3894;
e-mail: jjutai@uwo.ca
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