Locked-in syndrome: A qualitative study of a life story.
Mona Lisa Hordila, Cristina García-bravo, Domingo Palacios-Ceña, Jorge Pérez-corrales
Brain and behavior August 1, 2024 DOI: 10.1002/brb3.3495 via PubMed
Summary
A compelling narrative emerges from the life history of a 54-year-old man with locked-in syndrome (LIS) and his 50-year-old wife. Through qualitative interviews and autobiographical documents, five key themes were identified: navigating new realities, care and rehabilitation processes, communication challenges, the therapeutic power of writing, and the importance of personal autonomy. The couple emphasized the critical role of family and friends in their journey, highlighting how effective communication and medical support significantly aided their acceptance and adaptation to this profound life change.
Study at a glance
| Characteristics | Qualitative life history study Peer reviewed |
|---|---|
| Sample size | 2 |
| Population | A 54-year-old man diagnosed with locked-in syndrome and his 50-year-old wife |
| Keywords | Life story Locked‐in syndrome Narrative Qualitative research Qualitative study |
| Citations | 2 |
| Key finding | Five themes were identified in the life history of a person with LIS and his wife's perspective: understanding the new situation, care and rehabilitation, communication, writing as a coping tool, and personal autonomy and social participation. |
Abstract
Locked-in syndrome (LIS) is characterized by tetraplegia, anarthria, paralysis of cranial nerves, and facial musculature, with the preservation of consciousness and cognitive abilities, as well as vertical eye movements and eyelid movements, hearing, and breathing. Three types of LIS are distinguished: classic, incomplete, and total. The aim of the present study was to describe the life history of a person with LIS, as well as the wife's experience and perspective of this life history. A qualitative life history study was conducted with two participants: a 54-year-old man diagnosed with LIS and his 50-year-old wife. Data were collected through interviews and autobiographical documents submitted by the participants and analyzed following Braun and Clarke's method of inductive thematic analysis. Five main themes were identified: (1) how to understand and overcome the new situation; (2) the process of care and rehabilitation; (3) communication; (4) writing as a way of helping oneself and others; and (5) personal autonomy and social participation. The participants valued the support of their friends and family in the acceptance stage of the new situation, giving special importance to the communication skills and medical attention received after diagnosis.