1. Mariam Philobos-Sieczka Research Sponsor Elizabeth P. Anderson RN, PhD
Implications of Communication Intervention That Impact Quality of Life for Adults Diagnosed with Locked-In Syndrome: An Integrative Literature Review Proposal
Mariam Philobos-Sieczka
Research Sponsor Elizabeth P. Anderson RN, PhD
DePaul University School of Nursing
RESULTS
BACKGROUND
FUTURE RESEARCH
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.
Future replication of this study would be improved through the guidance of Parse’s Human Becoming theoretical framework. Other studies focusing on cost-effective interventions with this framework for nurses who need to communicate with the LIS patient would prove beneficial in the acute hospital setting. Further research is also indicative by the testimonies given from LIS patients and would prove useful in the contexture of safety.
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”?
PURPOSE
To identify what are the communication alternatives and perspectives essential for determining from the LIS patient point of view their quality of life.
NURSING IMPLICATIONS
Lack of awareness between the distinction of LIS and comatose presentations among healthcare staff may limit optimal psychological care. The new knowledge obtained may impact nursing practice by changing daily routines in the care for this population. This integrative literature review posits that integrating BCI and AAC as standard care in healthcare facilities will facilitate earlier detection of LIS.
RESEARCH QUESTION
What are the communication perspectives and alternatives essential for determining needs of safety and a life with quality from the patient with LIS’s point of view?
LIMITATIONS
METHODS
Only six research articles were found to be relevant to the focus of LIS and communication. This study revealed that a large focus was quantitative, with very little attention to possible theories to guide the studies. Furthermore, most of the articles were focused on subjective conditions such as “happiness” and “quality of life”, without defining the terms. This results in a less than adequate representativeness of the studies. Finally, and most importantly, the study representing psychological effects and perspectives did not identify specific faults of communication limitations in regards to safety. Testimonies provided above clearly implicate how a disregard to asylum went undetected and LIS individuals without communicative devices suffered both physically and mentally.
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.
The six research articles that resulted from the the data synthesis were analyzed from A major limitation was lack of representativeness and theoretical rigor in five out of the six original articles. The article that scored highly in the area of Representativeness was Schnaker’s study (2009) Detecting consciousnesses in a total locked-in syndrome: An active event-related paradigm. The purpose of this study was to prove that there is consciousness in the LIS state, despite how LIS represents itself. This article was also able to prove that ocular movement is a cost effective form of communication that is available at the bedside, which is a generalizable method of communication. The article that scored high in Theoretical Rigor was Pels’ Estimated prevalence of the target population for brain-computer interface neurotechnology in the Netherlands due to its guidance in this study (2017). The other five articles that scored a 1 in Theoretical Rigor were scored as such due no mention of theoretical guidance to the study.
In regards to Representativeness, Coghlan’ A locked in life can still be worth living was lacking due to the term “happiness” by which the participants responded was not defined (2011). Therefore, the study cannot be repeated in another how is attempting to analyze happiness in the LIS population. Similar to Coghlan’s shortcoming, Rousseau’s Evaluation of Quality of Life in Complete Locked-In Syndrome Patients also lacked in Representativeness because quality of life was not defined early in the article (2013), leaving the focus of the study as an arbitrary term. Corallo’s  Augmentative and Alternative Communication effects on quality of life in patients with locked-in syndrome and their caregivers scored low because although arbitrary feelings identified in the study were defined, there were only 15 participants in the study (2017). These 15 cannot ethically be used to define emotions for the entire LIS population. However this article, along with the other five articles, scored high in Informational value because input on emotional status is valuable in a patient population in which communication is not always attainable. Schnakers’ 2008 article, Cognitive function in the locked-in syndrome was able to prove in only 10 LIS patients that consciousness is intact. The methods of the this study could be utilized in all pseudo comatose representing patients to properly segregate LIS patients from true comatose patients, however in this setting 10 participants is not a Representative number. Lastly, Pels’ Estimated prevalence of the target population for brain-computer interface neurotechnology in the Netherlands (2017) received a low Representativeness score because the study revealed information about 25% of the population. Analysis of a quarter of Holland may be large, notwithstanding 75% of information of the population is still missing as a result of low response rate.
Conceptual Framework
STATE OF THE LITERATURE
Parse posits that quality of life can only be described by the individual because it is through the individual's subjective experience that the existent creates their own meaning (Pilkington, 1999). This theory served as a useful theoretical guide because quality of life can only be dictated by the patient him or herself.
CONCLUSION
Locked-In Syndrome is commonly misdiagnosed as comatose and loss of consciousness due to the aphasic and quadriplegic state these patients present (Laureys et al. 2005).  However, in the studies Detecting consciousnesses in a total locked-in syndrome: An active event-related paradigm and Cognitive function in the locked-in syndrome, consciousness is clearly present in these patients. Furthermore, Augmentative and Alternative Communication effects on quality of life in patients with locked-in syndrome and their caregivers has proven that this condition comes along with a unique set of burdens caused by an inability to communicate, such as heightened anxiety and depression. This study also proved that although LIS patients have greater mobility restrictions than healthy participants, LIS patients still rated their quality of life the same as those without LIS (Corallo et al. 2017).  A locked in life can still be worth living proved that many of these patients define their life as happy. Alternative forms of communication, such as Brain Computer Interface and ocular motor detection have proven to be highly cost-effective methods of communication. Future implications for biotechnology would be to include these alternative methods of communication in the acute hospital setting.