Implications of Communication Intervention That Impact Quality of Life for Adults Diagnosed with Locked-In Syndrome: An Integrative Literature Review

Implications of Communication Intervention That Impact Quality of Life for Adults Diagnosed with Locked-In Syndrome: An Integrative Literature Review

Mariam Philobos-Sieczka

Research Sponsor Elizabeth P. Anderson RN, PhD

Background: Locked-in syndrome (LIS), or pseudo coma, is a condition in which the patients are conscious but cannot make contact with the world outside their own body. How does one define such an arbitrary phrase as “Quality of life”? This alone is difficult to measure for those who can communicate, but is harder in patients with LIS. Only the patient him or herself can tell us their own quality of life. Notwithstanding, how can a patient in a pseudo comatose state express such a deep feeling? Therefore, the question that arises is by what communicative measure does the researcher utilize to calculate quality of life from the patient’s own unique perspective.

Objective: To identify what are the communication alternatives and perspectives essential for determining from the LIS patient point of view their quality of life.

Methods: This study was conducted under the design of an integrated literature review (Torraco, 2005) and was guided by Parse’s theory of Human Becoming (Pilkington, 1999). Through thorough analysis, six studies were organized by three common themes. The studies were then evaluated in context of each theme for authenticity, methodological quality, informational value, representativeness, theoretical rigor, and relevance.

Results: A total of six studies were reviewed and analyzed. Significant cognitive deficit in LIS patients was absent in all of the participants, implying full cognition in the locked-in state (pseudo coma). These studies have revealed that communication alternatives are available, ranging from eye blinking to BCI (brain computer interface). Ocular movement was discovered to be a cost-effective form of communication that is available at the bedside, which is a generalizable method of communication. In addition, research has found no statistical difference in the rating of quality of life by those who have LIS and those who do not have LIS. However, a higher incidence of anxiety and depression in the LIS patient population was found and may be due to their isolated state. A survey of LIS patients regarding their happiness found that 72% were happy with life and found it worth living, despite their condition. Major limitations were in the lack of theoretical rigor and representativeness due small sample sizes.

Conclusion: Technology and computer interface have facilitated in detecting consciousness and surveying satisfaction in the quality of life among the LIS population. As evident by a return to the literature in regards to testimonies that was found in the popular literature alone (2 biographies), a lack of focus on the implications of safety (potential abuse by caregivers) regarding a non-communicative state resulted in physical and psychological harm that went undetected. Future research recommendations are in regards to further focus on safety and to utilize qualitative methods.

Keywords: Locked-In Syndrome, LIS, communication, alternative communication, quality of life, happiness in quality of life, comatose, pseudocomatose