Stroke rehabilitation in the context of early supported discharge. Quantitative and qualitative aspects of daily life after mild-to-moderate stroke
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Stroke affects mainly elderly people and is a major cause of disability worldwide. A primary focus in rehabilitation is stroke survivors’ ability to engage in daily life. Current evidence supports Early Supported Discharge (ESD) to home and follow-up rehabilitation in the municipality over conventional care in hospital. This view arises because promising results show that independent living in the community is possible, and patients who are mildly to moderately affected by stroke benefit the most. However, we do not know which rehabilitation model in the municipality produces the best gain in stroke survivors’ activities of daily living (ADL) ability, or how this new way of organising stroke rehabilitation is working for patients. The overall aim of this thesis work was to broaden our understanding of different aspects of daily life after stroke and ESD rehabilitation models in the municipality. We aimed to acquire more crucial knowledge about successful outpatient rehabilitation and to contribute to a more comprehensive understanding of what it means to live with mild-to-moderate stroke.
The objective of paper 1 was to compare three models of outpatient rehabilitation: ESD in a day unit, ESD at home, and traditional treatment in the municipality (control group). It was hypothesised that ESD models would result in superior outcomes in ADL ability (in terms of changed performance and independence) during the first 3 months after stroke. A group comparison study was designed within a larger, more comprehensive randomised controlled trial (RCT). Patients were tested with the Assessment of Motor and Process Skills (AMPS), a tool for evaluating the quality of ADL (performance and independence), at baseline and discharged directly to their homes. The AMPS was used as a primary outcome measure, and the modified Rankin Scale (mRS) was used as a secondary outcome measure. Included in the study were 154 stroke survivors (median age: 73 years), with an overall mild-to-moderate disability, a short stay in the stroke unit (median: 8 days), and no significant differences in baseline characteristics. Their baseline ADL scores indicated some functional limitations, and the AMPS revealed more problems than the mRS. We had a substantial lost to follow-up, with 103 patients being retested at 3 months. Compared to those who were retested, lost-to-follow-up subjects were older, lived more often alone, and had suffered a more complicated stroke. We found no significant differences when comparing pre-post changes in ADL scores between the rehabilitation groups. Within the group of patients who were retested, we found significant pre-post improvement for all the AMPS scores but no significant changes for the mRS scores. Controlling for possible confounding factors, patients in the ESD groups were, compared to the control group, significantly associated with improved ADL ability at 3 months measured by the mRS but not the AMPS. We concluded that further investigation is needed to find the best rehabilitation model to improve stroke survivors ADL ability. ESD rehabilitation may be beneficial to patients with participation restrictions or physical impairment after stroke.
In paper 2, the objective was to explore mild stroke survivors’ experiences of living with stroke in the context of ESD and continued rehabilitation at home. The objective of paper 3 was to explore mild-to-moderate stroke survivors’ experiences with home rehabilitation after ESD. Both studies were based on the same in-depth interviews anchored within a qualitative interpretative interview design, conducted in the context of the larger RCT. Eight patients between 45 and 80 years old from the home rehabilitation group were selected for the interviews. Extensive interview data formed the basis for paper 2 and paper 3. The empirical material for both papers were analysed using an interpretive approach and systematic text condensation. The coping theory, called Sense of Coherence, was used in later stages of the analysis to further deepen our understanding.
With this background in mind, in paper 2 our analysis focused on patient-attributed meanings of their changed body, their activity, and participation in the home recovery process after stroke. We found that living with mild stroke affected the participants’ life on an existential level. Differences and similarities in experienced challenges were related to vital health issues, the body, and self-perception, which are dimensions that seem to complicate practical tasks and close relationships. Six to 8 months after the stroke, the participants were still living with unresolved rehabilitation needs. We concluded that mild stroke rehabilitation should focus more intensely on basic concerns related to vital health issues, the body, and self, which seem to complicate mild stroke survivors’ entrance back into practical and social activities. Comprehending their own changed body and sense of self seems to be a long-term process, even when living with mild stroke. We suggested that healthcare professionals should be more aware of stroke survivors who experience an uncertain situation and unresolved rehabilitation needs.
The focus of interest in paper 3 was on patient-attributed meanings of how ESD and home rehabilitation contributed to their recovery 6-8 months after returning home. We found that the process of recovery was motivated by a hope of attaining a life worth living. Crucial determinants to their hope were their ability to make sense of their now-altered body, as well as cultivating mutual confidence in the healthcare professionals with whom they were involved. Getting familiar with their changed body was an emotional process, an process for which the participants requested help. To accommodate stroke survivors’ need of emotional support to foster the hope necessary to forge ahead, healthcare professionals’ communication qualities and their ability to attend to individual needs were deemed important. We concluded that professionals involved in home rehabilitation should strive for cooperation among all stakeholders and build a flexible service based on individual needs. Increased attention to therapeutic communicative qualities, bodily changes, emotional processes, social relationships, and long-term follow-up might contribute to a richer and more beneficial experience for stroke survivors.
In summary, evidence provided by this thesis work on ESD models of rehabilitation after stroke does not clearly recommend ESD models over traditional rehabilitation in the municipality. This conclusion refers explicitly to outcomes of changed ADL performance and independence during the first 3 months after mild-to-moderate stroke. Existential and emotional challenges seem to be the core of what mild-tomoderate stroke survivors are struggling with even 6-8 months after onset.