My research project
Understanding how partners of those with Locked-in syndrome experience changes in family
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. An individual with LIS may have upper eyelid movement and vertical gaze, but experiences significant communication difficulties. Although there is a limited amount of research exploring the area, literature suggests that family members of those with LIS are more likely to experience feelings of anxiety and depression compared to the general population. In other patient groups, including family members of those with a Traumatic Brain Injury (TBI) and relatives of those who have experienced a stroke, it has been found that feelings of depression are linked to social support and family functioning. Previous research has illustrated that changes in family functioning in families of those with a TBI may be linked to changes in cognitive functioning. However, changes in family dynamics have not been explored in family members of those with LIS, where there are significant physical changes but no changes in cognitive functioning. This study aims to address these gaps in the literature by using an Interpretative Phenomenological Analysis (IPA) approach to explore how partners of those with LIS experience changes in family dynamics after their partner becomes ‘locked-in’. IPA is a method of analysis in psychological qualitative research with an idiographic focus, which means that it aims to offer insights into how a given person in a particular context makes sense of a certain phenomenon. IPA is concerned with the detailed examination of human lived experience. It is hoped using IPA will provide helpful detailed insight into the experiences of partners of those with LIS, which may inform future support and interventions to support the spouses of those with LIS.