“Nobody talks to us … Nobody asks us”

A study of aphasia and information seeking

Abstract

This article-based PhD explores the impact of aphasia on information seeking. Aphasia is an acquired language disorder caused by brain damage. Aphasia affects the ability to produce and comprehend written and spoken language, with word mobilization difficulties being a common challenge. Information seeking requires skills related to both language use and comprehension, such as word mobilization, spelling and reading. This qualitative study is based on semistructured interviews and observations of search behaviour with 20 people diagnosed with aphasia. The interest organization LHL Hjernslag og Afasi (LHL Stroke and Aphasia Association) and speech therapists have contributed with recruitment and professional expercise. The study found that aphasia can have a huge impact on information seeking due to impaired language skills. For example, participants reported difficulties in formulating proper query words because of challenges with word mobilization and spelling. Additionally, assessing result lists was challenging due to reduced reading skills. Furthermore, some information needs did not result in any information searching, because it was considered too strenuous. In general, information seeking was described as a time-consuming, difficult and frustrating activity. To solve information needs, searching was often conducted in several steps. In the initial steps, images and synonyms were reported as useful for mobilizing search terms. Browsing was favored as a search strategy because of low demands for query formulation. Furthermore, many participants needed help to solve information needs. Acquiring aphasia led to reduced access to information, and thereby limited opportunities for societal participation, a sense of exclusion and diminished autonomy. The study is grounded in library and information science but can also be relevant in other fields. This is an empirical study that highlights the need for more inclusive search systems that can support the search behavior of people with aphasia. The study also discusses how librarians can contribute to the interdisciplinary support system through search assistance and guidance.