Double language scarcity: narrative accounts of spiritual and existential needs in aphasia

Background: Spiritual and existential issues become important and present to many people who experience an illness or a crisis, such as living with aphasia after stroke. However, the aphasia research and literature concerning spiritual and existential issues when living with aphasia are limited. Since there is a strong clinical aim to provide holistic and person-centred care in many parts of the world, these issues need to be studied further. In a highly secular society such as Denmark, many people have not developed a language for expressing spiritual and existential thoughts, feelings, and needs. In addition, people with aphasia may experience that their communication difficulties pose an extra barrier to talking about these issues. Therefore, the spiritual needs of people with aphasia may be overlooked. Aims: This study aims to give an in-depth description of how people with aphasia experience and relate to spiritual thoughts, feelings and needs after their stroke. Based on the findings, it is discussed whether and how speech and language therapists (SLTs) should attend to and support spiritual and existential needs. Methods & procedures: Two people with aphasia participated in in-depth phenomenological interviews inspired by narrative inquiry approaches. The interviewer met with the participants two and three times, respectively. Each interview lasted between 2 and 2.5 hours. Interviews were subject to reflexive thematic analysis. Outcomes & results: Reflexive thematic analysis resulted in three themes: (1) faith and beliefs, (2) faith as support, and (3) talking about spiritual and existential issues. Conclusions: The results show that spiritual and existential thoughts, feelings, and needs are present in the lives of the participating people with aphasia, and that faith can be a resource in the rehabilitation process, allowing them to maintain hope for the future and a meaningful life. The results further suggest that if people with aphasia are to be met in their spiritual and existential needs, it is necessary to help them overcome their double challenge of not having a language for spiritual and existential needs and simultaneously having aphasia. Further research is recommended to explore the facilitators and barriers for SLTs and other members of the multidisciplinary team to meeting the spiritual and existential needs of people with aphasia.