Discovering you have an autoimmune disease can be very stressful. Understanding a physical disease's cognitive effects can aid with coping.
As it is understood, physical illnesses have a negative effect on our bodies physically. What some may neglect to understand is that those same physical illnesses may also negatively affect our way of thinking as well. Sterling (2014) takes a deeper look through qualitative interviews at how the experience of fatigue can impact the lives of patients with Systematic Lupus Erythematosus (SLE).
The Study About SLE
Sterling conducted qualitative investigation pertaining to fatigue and SLE patients. Sterling (2014) stated the objective was to find a better way to understand how patients describe fatigue and the impact on their daily lives. Qualitative research tends to involve in-depth and on-going interactions with participants. Qualitative research methods range in a variety of way to inquire data, from examining language, through searching for themes and codes, to interviewing and listening to stories of participants (Frost, 2011). The method of using one-to-one concept-elicitation interview was also tested, to evaluate new treatments for fatigue and SLE; this accomplished by using Interpretative Phenomenological Analysis (IPA). According to Frost (2011) Interpretative Phenomenological Analysis is an approach to qualitative research that explores in detail personal lived experience to examine how people are making sense of their personal and social world,. With IPA it is important to consider the viewpoints of participants, and acknowledge their contexts of culture as well as socio-history. It is best to remember based on participants viewpoints, and considerations it is up to the researcher to best interpret the situation to make sense of their experiences. Sterling (2014) states the analysis methods involve in-depth evaluation of patients’ descriptions of fatigue due to SLE based on participant’s perception. A purposive sampling strategy was used in this investigation. Frost (2011) states a purposive sampling strategy refers to a method of selecting participants because they have particular features or characteristics that will enable detailed exploration of the phenomena being studied. Sterling (2014) gathered patients that were diagnosed with SLE and were currently treated for SLE. The participants were ages 18 years or older, and had a positive antinuclear or anti-double-stranded DNA (Sterling, 2014). This investigation was designed by obtaining research through individual, in-person, semi-structured interviews. The interviews were conducted with each participant based on interview guide; it contained open-ended questions allowing participants to spontaneously report fatigue as a symptom as a of their SLE; as well as including descriptions of fatigue and the impact it has on their lives (Sterling, 2014). It is important for Sterling to take note of spontaneous reported fatigue and probed reports of fatigue. If the reports were spontaneous then it is viewed an important methodological consideration as it avoids bias perspectives within the data.
Sterling uses thematic analysis, as a data analysis method. This method seeks to identify, analyze and reports pattern across a data-set; it also uses inductive and deductive reasoning to identify categories and patterns within the data (Sterling, 2014). The first step to completing this method is familiarization of the data by repeatedly reading the data-set. From there categories were identified, and then those themes were reviewed into themes. This process was completed by sorting themes, and considering the relationships between codes and nay of their combinations. Once a theme was revealed it was then defined and given a name. Sterling (2014) utilized a qualitative analysis software tool called ATLAS .ti version 5; this thoroughly analyzed interrelationships between themes and concepts that developed from the data. Sterling also importantly noted demographic, background data, and medical history data using descriptive statistics such as means, standard deviation and frequencies. This was done in order to obtain a numerical static about each background. Generally the more diverse the investigation the more valid it is; as it takes participants from many different backgrounds and compares their experiences about the same topic. Of the 22 participants with SLE there were not any new categories added to the data. When participants were asked to link fatigue to SLE, their reports were specifically related to SLE. Sterling (2014) states of the interviewed participants the average age was 45; 59% were African American; 95% were female, and the mean disease duration was 12 years. When patients were asked to report their SLE symptoms, fatigue or tiredness was reported by most, 11 reported fatigue, and 8 reported tiredness; while the remaining three did not report either. It was found that this tired or fatigue feeling impacted the participants on a different level. Some were emotionally affected while others suffered cognitive impacts, as well as having their leisure, social, family and work activities affected. Such affects were the inabilities to keep employment or inabilities to stay at work a full day, some had to cut their weekly hours worked because they felt they could not perform the duties that were expected of them. Some participants had their family lives affected by the feelings of fatigue; since they felt they were not able to perform their regular daily tasks, it was up to their family members to pick up their slack. Socially some found it difficult to stay engaged in conversations, while others were unable to socialize late into the evening due to inability to stay awake. Many of these inabilities took a toll on the participants resulting in their emotions being negatively impacted. From being tired Sterling (2014) stated participants experienced depression, mood swings, irritability, helplessness, anger, anxiety, and feelings of being miserable. Participants also mentioned fatigue taking on a negative role in regards to their cognition. Sterling (2014) mentions the term “brain-fog” as a symptom experienced by two participants. While the rest state they have difficulties concentrating, difficulty with their short-term memory, the inability to use the right words, impaired comprehension, as well as impaired ability to have a conversation (Sterling, 2014).
Physical Illness can Impact our Cognition
This investigation was conducted to understand how fatigue affects those with SLE through qualitative research. It was found that fatigue was a common symptom experienced by those diagnosed with SLE. However the severity of fatigue varied with each individual. Though the severity varied it was concurrent that each of the participants’ lives were impacted; whether it was socially, emotionally, cognitively, or through family, and/or work. Sterling (2014) found the findings in this investigation informative and believed the information may assist the developing of a new fatigue measure specific for patients with SLE.
Frost, N. (2011). Qualitative research methods in psychology. New York, NY: McGraw-Hill.
Sterling, K. (2014). Patient –reported fatigue and its impact on patients with systemic lupus erythematosus. Lupus. 23. 124-132.
© 2018 Kristina