Understanding how partners of those with Locked-In Syndrome experience changes in family

About the study

My name is Cathy and I’m a Trainee Clinical Psychologist at the University of Surrey. I am currently conducting research into the experiences of partners of those with Locked-In Syndrome (LIS), specifically around how their family has changed since their partner has developed LIS. There is currently very limited research into the experiences of partners of those LIS and it is hoped that this research will help to general insight into this under-explored area.

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 in 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.

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. 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 partners of those with LIS.

Who can take part? (You must answer yes to all of the below criteria)

  1. You must be the current partner or spouse of someone with LIS.
  2. You must be between the ages of 40 and 70.
  3. You must have been with your partner for at least one year prior to them having LIS.
  4. You must have at least one child.
  5. You must be fluent in English.
  6. You must live in the United Kingdom
  7. You must be willing to take part in a one-to-one semi-structured interview online.

What is involved in taking part?

You will be invited to do a one hour interview via Microsoft Teams (video call). This will be organised for a time and date of your convenience.

For further enquires and to take part contact:

Cathy Clifton
Trainee Clinical Psychologist (Lead Researcher)
University of Surrey