Recovery from aphasia can be viewed in terms of improvement of language functioning but also as a process by which people learn to adapt and live successfully despite ongoing language difficulties. The notion of “living successfully” with aphasia is becoming important to aphasia research. Studies in the area have explored the meaning of living successfully with aphasia in the more chronic phase, when people have been living with aphasia for many years. In order to inform the provision of better services, it is also important to understand what people with aphasia perceive facilitates living successfully with aphasia during the early stages post stroke. A prospective longitudinal mixed methods study was undertaken to expand on previous research and investigate factors that facilitate successfully living with aphasia during the first year post stroke.
This study used a convergent parallel mixed method design where qualitative and quantitative data were collected simultaneously in order to develop a comprehensive understanding of participants’ experiences. Data were collected from 15 participants with aphasia at four time points: 3, 6, 9 and 12 months post stroke. Qualitative and quantitative data were initially analysed and reported separately. For the qualitative strand 15 participants were interviewed at 3 months, 13 participants at 6 months; 10 participants at 9 months; and 12 participants at 12 months post onset. Thus, a total of 50 interviews were conducted. Interviews were transcribed verbatim and analysed using thematic analysis. The Assessment for Living with Aphasia (ALA), a self-report assessment tool developed to capture a range of holistic outcomes across the World Health Organization’s International Classification of Functioning, Disability and Health (ICF), was used to collect data for the quantitative component of this study. Analysis of data from the ALA gave an overall picture of life with aphasia across the first year post stroke. Data including self-ratings across Language Impairment, Participation, Environment, Personal and overall Life with Aphasia domains were collected at 3, 6, 9 and 12 months post stroke. Quantitative data was reported for the 8 participants with full data sets at four time points: 3, 6, 9 and 12 months post stroke. Friedman analysis was used to determine if changes in scores across time were statistically significant. Descriptive statistics were used to describe ALA total scores, domain scores, item scores, and individual profiles across time.
Findings from the results are presented as four separate studies. Study 1 describes the perceptions of people with aphasia regarding factors that facilitated successful living with aphasia during the first 3 months post onset. Findings identified a number of factors important to living successfully with aphasia. These included: a need to do things in order to be actively engaged in rehabilitation; increase independence and have a purpose in life; the importance of social support; the value of rehabilitation; a need to adapt and make adjustments; and having a positive outlook.
Study 2 describes findings from the entire longitudinal data set about the perceptions of people with aphasia regarding factors important to living successfully with aphasia and changes that occurred throughout the first year post stroke. Results from this study indicated that it was important for people with aphasia to actively move forward. Factors relating to perceived communication improvement, engagement in activities, social support and maintaining positivity were important in facilitating life with aphasia across time.
Quantitative data obtained from the ALA are presented in study 3. This study sought to determine if life with aphasia as measured on the ALA changed during the first year; and to describe the trajectory and nature of change on the ALA. There was a general trend in total ALA scores and domain scores to positively increase over time, however findings were not statistically significant. Over time however, participants consistently identified specific items in the Participation domain to either contribute to or detract from their life with aphasia. That is, participants felt they maintained a good relationship and were able to maintain good conversations with the most important person in their life. However, limited ability to join in complex conversations and to participate in volunteering and work activities was perceived to be problematic. Four general trajectories of change regarding ALA total scores were identified across the first year post stroke. These included: one participant who had a high-low trajectory or a notable downward sloping outcome; four people with a low-high trajectory or a marked upward sloping trajectory; two participants with a fluctuating trajectory of a discrete up and down pattern; and one participant with a low–low trajectory without marked improvement across time. Factors contributing to individual outcome trajectories over time are profiled and discussed as individual cases.
To synthesise findings from the qualitative and quantitative data two participants were purposefully selected to be further analysed using case study methodology in study 4. Two participants with similar aphasia severity and demographics, yet contrasting experiences in (a) perceived experience of living successfully with aphasia as elicited through semi-structured interviews, and (b) self-rated outcomes regarding life with aphasia throughout the first year post stroke, were identified. A cross-case comparison of the experiences of these two participants from both their qualitative interviews and formal assessment data was completed. Findings from this analysis indicated three key factors to be critical in attaining either a more positive or negative outcome at the end of the first year post stroke. These included the influence of emotional distress, engagement in meaningful activities and a participant’s perceived improvement across time. Overall, a number of factors particularly those related to engagement in activities, social support, improvement in communication and maintaining positivity have been identified to optimise the chance of living successfully with aphasia during the first year post stroke. Findings from this thesis suggest a holistic approach to aphasia management is necessary with direct intervention efforts consistent with the broader context of an individual’s everyday life. Speech language pathologists may play a crucial role in the delivery of timely services to ensure that people with aphasia and their families are supported in their endeavours to live successfully with aphasia.