Experiences and need of support to significant others of persons with aphasia

Background and aims: Significant others (SOs) of people with aphasia (PWA) can affect the individual’s social participation, conversational ability, and rehabilitation outcome [1]. SOs have been called the most valuable but also the most vulnerable resource of a patient [2]. To be a supportive SO and to remain healthy in a challenging situation SOs may need support themselves. The aim of this study was to investigate what support SOs of PWA have received, how they experienced the support, and their need for further support. Methods: 173 SOs responded to a study-specific questionnaire (response rate: 67.8%). Quantitative data were analysed with descriptive and comparative statistics and answers to open-ended questions were analysed with qualitative content analysis. Results and main contribution: The SOs appreciated knowledge, devotion, helpfulness, and empathy of health care staff and community services. Community services were perceived as being characterised by long processing times, lack of continuity of staff and insufficient understanding of the needs of the PWA and the SO. Most respondents were satisfied with the informal support provided by disability organizations, family, and relatives. There was however still a pronounced need of a more understanding environment (family, friends, health-care services). The strongest need expressed by the SOs was having time of their own. Despite an acknowledged burdensome situation and low emotional well-being among SOs of PWA [3], the need for counselling was the least perceived need (expressed by 16%). Conclusions: Feeling seen and acknowledged as well as having time of their own are important but perhaps underestimated needs of SOs of PWA. Implications: This study highlights the importance to include the SOs in the rehabilitation of PWA but also to provide separate support to them.In the list of poster session abstracts, the title is: Experiences and need of support to significant others of people with aphasia