The combined perceptions of people with stroke and their carers regarding rehabilitation needs 1 year after stroke: a mixed methods study

OBJECTIVES: The aim of the study was to explore the associations between the dyad’s (person with stroke and informal caregiver) perception of the person with stroke’s rehabilitation needs and stroke severity, personal factors (gender, age, sense of coherence), the use of rehabilitation services, amount of informal care and caregiver burden. Further, the aim was to explore the personal experience of everyday life changes among persons with stroke and their caregivers and their strategies for handling these 1 year after stroke. DESIGN: A mixed methods design was used combining quantitative and qualitative data and analyses. SETTING: Data were mainly collected in the participants’ homes. OUTCOME MEASURES: Data were collected through established instruments and open-ended interviews. The dyad's perceptions of the person with stroke’s rehabilitation needs were assessed by the persons with stroke and their informal caregivers using a questionnaire based on Ware’s taxonomy. The results were combined and classified into three groups: met, discordant (ie, not in agreement) and unmet rehabilitation needs. To assess sense of coherence (SOC) in persons with stroke, the SOC-scale was used. Caregiver burden was assessed using the Caregiver Burden Scale. Data on the use of rehabilitation services were obtained from the computerised register at the Stockholm County Council. PARTICIPANTS: 86 persons with stroke (mean age 73 years, 38% women) and their caregivers (mean age 65 years, 40% women). RESULTS: Fifty-two per cent of the dyads perceived that the person with stroke’s need for rehabilitation was met 12 months after stroke. Met rehabilitation needs were associated with less severe stroke, more coping strategies for solving problems in everyday activities and less caregiver burden. CONCLUSIONS: Rehabilitation interventions need to focus on supporting the dyads’ process of psychological and social adaptation after stroke. Future studies need to explore and evaluate the effects of using a dyadic perspective throughout rehabilitation.