Abstract
Locked-in syndrome (LIS) is a rare neurological condition, where an individual
experiences quadriplegia, mutism and lower cranial nerve paralysis, but is awake and
conscious and does not experience cognitive impairment. Part one of this portfolio presents a
systematic review examining the quality of life in individuals with LIS. Seven themes
summarised the QoL experiences of the people with LIS, including choosing and receiving
appropriate care; access to communication; coping and living with LIS; thoughts of death and
dying; mood; functional impact of physical health and satisfaction with relationships. This
review suggests that clinicians should consider the domains identified in this review when
working with patients with LIS.
The second part of this portfolio presents an empirical paper that explored family
changes from the perspective of partners of individuals with LIS after they had developed
LIS. Three superordinate themes emerged from the analysis, including ‘Disruption to the
Family Lifecycle’, ‘Change in the Closeness/Distance of Family Relationships’ and ‘Change
in the Partner’s Life’. Understandings from this study could be applied into clinical settings
in rehabilitation interventions involving family members, as well as residential settings and
clinicians working with partners preparing to take their partners with LIS home from hospital.