Evaluation of a client-centred ADL intervention after stroke : perspectives of occupational therapists, clients with stroke and significant others

Abstract: The overall aim of this thesis is to build knowledge of a new client-centred activities of daily living (ADL) intervention (CADL), which takes the unique experiences of persons with stroke as the point of departure, and aims to enable agency in daily activities and participation in everyday life among persons with stroke. The focus of this thesis is an evaluation of CADL after stroke, from the perspectives of occupational therapists (OT), clients with stroke and their significant others. Methods: Study I uses quantitative content analysis to explore how client-centredness is documented in 280 medical records by OTs who received training intended to enhance client-centredness, compared with OTs who had not received such training. Studies II and III are based on a multicentre randomized controlled trial (RCT): Study II studies the effects of CADL compared with usual ADL (UADL), 3 months after the start of interventions on 280 people with stroke regards: independence in ADL, perceived participation, life satisfaction, use of home help service and satisfaction with training; and on the significant others of persons with stroke receiving CADL or UADL as regards caregiver burden, life satisfaction and provision of informal care. Study III compares the effects of CADL and UADL on the caregiver burden, provision of informal care, participation in everyday occupations and life satisfaction of 183 significant others up to one year after the persons with stroke were included in the study. Study IV has a grounded theory approach exploring and describing whether and if so, how CADL was integrated into everyday lives of the significant others of people with stroke who received CADL during the first year after the intervention. The findings in Study I show that OTs with client-centredness training recorded significantly more client participation in goal-setting than therapists without training. In Study II, 3 months after inclusion, there were no differences between the CADL group and UADL group in the outcomes of people with stroke or their significant others, except in the Stroke Impact Scale “Emotion” domain, which favours CADL intervention. Nor were there any differences in outcomes at 12 months between significant others in the two groups, or in changes between 3 and 12 months in Study III. For significant others in the CADL group, however, the odds were significantly lower regarding the “General strain” factor in Caregiver burden at 12 months compared to 3 months. The findings in Study IV indicate that CADL has been integrated into the everyday lives of the significant others. An overall core category “Taking responsibility and achieving balance with respect to self-esteem to get on with everyday life”, and four interrelated subcategories represent a temporal process of interactions between significant others and persons with stroke in their daily activities in which significant others adapted themselves to achieve balance in everyday life. One further key aspect is that as persons with stroke acted upon their own activity goals, their significant others were encouraged to act on their own needs. Conclusion: It is possible to increase client-centredness through training. CADL has beneficial effects on the perceived impact of stroke on emotions at 3 months after stroke, there were no other differences in effects between CADL and UADL for people with stroke or their significant others. Among the significant others in the CADL group, however, the experiences of burden seemed to decrease over time between 3 and 12 months, despite no change in informal care. Findings indicate that it was a transfer of learning from the person with stroke to the significant others, with a new shared learning. By initiating the CADL soon after the stroke, professionals involved such as OTs can support both the people with stroke and their significant others in adjusting to the new life situation. In order to tailor the interventions to meet the individual needs in everyday life, however, conducting follow-up sessions over a longer time period would be of importance.