More than a quarter of people who have a stroke present with aphasia immediately post-stroke (approx. 30%) and of these, around 60% experience chronic communication difficulties. Provision of information is seen as one of the top 10 best practice recommendations for aphasia management and has been recognised as important to people with aphasia and their families, resulting in worry and difficulties in interpersonal relationships. Most of the research focusing on information-giving in this area has examined what people with and aphasia and their families want to hear about, rather than when. This study examines when people would prefer to receive information. A survey, made up of eight core questions, was circulated using a snowballing strategy to gather information from relatives of people with aphasia living in Australia; 65 people completed the survey. Results demonstrate that relatives would like information on aphasia throughout the five identified stages of 1) first days; 2) starting to recover; 3) preparing to leave hospital; 4) just returned home; and 5) settled at home. They reported not knowing exactly what they needed at the time but feeling that information on the best way to communicate and how to help their loved one with aphasia communicate was most useful. This study has implications for the clinical delivery of services to people with aphasia, indicating that provision of information to family members should be prioritised, particularly in the first two stages of the journey where respondents felt they hadn’t received much help at all in this area and felt dissatisfied with services. Speech and language therapists working with people with aphasia across all five stages outlined in this study should consider co-producing written materials with their service users to support their delivery of relevant and timely information.

Family members’ experiences and preferences for receiving aphasia information during early phases in the continuum of care.
Rose TA, Wallace SJ, Leow S.
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Anna Volkmer

UCL, London, UK.

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