Recapturing self-care after stroke or spinal cord injury : Exploration of experiences and evaluation of a client-centred intervention

Abstract: After stroke or spinal cord injury a person s lived body and life-world commonly change, and suddenly taken-for-granted occupations such as self-care become difficult to perform. This can be a great challenge to living an independent everyday life. In order to enable performance of self-care, occupational therapists commonly initiate self-care training in the early phase of rehabilitation. However there is a lack of well-defined self-care interventions evaluated in research. The general aim of this thesis was to describe the occupational therapists experiences of self-care training and the clients experiences of recapturing self-care after a stroke or a spinal cord injury as well as in close collaboration with occupational therapists to develop a new client-centred self-care intervention (CCSCI) for evaluating the effect of this intervention in a randomized control trial (RCT) pilot study. This research project comprises four studies concerning the recapturing of self-care in a rehabilitation setting during the early phase of rehabilitation (the first week to three months) after a stroke or spinal cord injury. The project used both qualitative methods (Study I-III) and quantitative methods (Study IV). Study I described what characterized the phenomenon of self-care training from 12 occupational therapists viewpoints. Study II identified the lived experiences of recapturing self-care, and Study III the meaning of context in the recapturing processes of 11 persons with stroke or spinal cord injury. Studies I-III are based on interviews and analyzed using the Empirical Phenomenological Psychological (EPP) method, aimed at describing the essence, structure and character of the studied phenomenon based on the participants lived experiences. In Pilot Study IV the aim was to evaluate the effect of CCSCI on (i) activities of daily living (ADL) and life satisfaction in persons with stroke, (ii) caregiver burden and use of informal care and home-help services, and (iii) the feasibility of the RCT study design. Forty persons with stroke were included (Intervention Group (IG) n=19, Control Group (CG) n=21), as well as their significant others (n=16). Study I identified eight therapeutic strategies used by all the occupational therapists to support their clients in taking control of their self-care and their lives again. Study II identified four main characteristics that were presented in all the participants lived experiences: a) becoming familiar with the new body, b) recapturing self-care through trying, c) reclaiming control, and d) feeling uncertainty in the continued process of recapturing self-care. Study III identified six main characteristics of the meaning of context in recapturing self-care: a) support from others, b) expectations in the air, c) extended time, d) new daily structure, e) therapeutic relationship enabling possibility, and f) gradual change in challenge. The main characteristics described in Studies II and III seemed to be prerequisites for the recapture of self-care after stroke or spinal cord injury. Study IV did not show any statistically significant differences between the two groups in outcomes at the three-month follow-up. Comparing clinically significant improvements in ADL on an individual level, 13 out of 14 (93%) participants improved in ADL in the IG, and 12 out of 19 participants (63%) in the CG. The CCSCI appears promising for the recapture of self-care. The feasibility of study design and methods were, in general, favourable for a larger RCT. In conclusion, this research project identified the lived experience and the meaning of recapturing self-care after stroke or spinal cord injury. It can increase the understanding of these phenomena among rehabilitation professionals such as occupational therapists. A well-defined and research-based self-care intervention was developed and evaluated in collaboration between the researcher and occupational therapists. The findings from Studies I-III were integrated in the new CCSCI, evaluated in Study IV. This approach of integrating qualitative studies in a new and well-defined intervention can be viewed as a model for how to implement research into practice, which has been shown to be a challenge in the area of health care.