ObjectiveTo understand poststroke fatigue from the perspective of stroke survivors and caregivers expressed in an online discussion forum.DesignThe search terms ‘tiredness’, ‘fatigue’, ‘tired’, ‘weary’ and ‘weariness’ were used to identify relevant posts. Thematic analysis performed by two independent researchers who coded all forum posts and identified pertinent themes. Posts were coded in relation to two research questions: (1) how is poststroke fatigue described? and (2) what coping strategies are suggested to target poststroke fatigue? Each theme was then summarised by a lead quotation in forum users’ own words.SettingUK-based web forum hosted by Stroke Association, TalkStroke. Archives from 2004 to 2011 were accessed.Participants65 stroke survivors and caregivers (mean age 54 years, 61% female) contributed to 89 relevant posts that included a relevant search term. This included 38 stroke survivors, 23 individuals with family or carer role and 4 others unidentified.ResultsSix themes were generated: (1) medicalisation of poststroke fatigue: ‘a classic poststroke symptom’, (2) a tiredness unique to stroke: ‘a legacy of stroke’, (3) normalisation and acceptance of poststroke fatigue: ‘part and parcel of stroke’, (4) fighting the fatigue: ‘an unwelcome guest’, (5) survivors’ and caregivers’ biological explanations: ‘the brain healing’ and (6) coping mechanisms: ‘pace yourself’. Forum users also repeatedly commented that poststroke fatigue was ‘not understood by the profession’.ConclusionThis is the first study to employ data from an online forum to characterise poststroke fatigue. Our data are considered naturalistic owing to the absence of a researcher guiding the discussion and thus generates useful insights for healthcare professionals. Findings suggest a requirement for consistent understanding and explanation to be provided by healthcare professionals. The beliefs outlined here highlight the gap between clinical and community knowledge. Further research to translate understanding of patient and carer perspective into improved management of poststroke fatigue is required.
Posttraumatic stress disorder (PTSD) is a complex mental disorder whose neurobiology, including epi/genetics, is still elusive. The South East European (SEE)-PTSD study has conducted an impressive amount of research on molecular mechanisms of PTSD. The results of the study make obvious the need of coordinated pluralism and transdisciplinary integrative approach in research on molecular mechanisms of PTSD and other stress-related disorders. The development of PTSD is influenced by a tangled and complicated interaction of inborn or acquired predisposition or vulnerability and environmental adversity which alters gene regulation producing effects on neurons and brain systems and inducing changes in cognition, emotion and behavior. There are still no identified objective biomarkers or tests which could confirm the trauma exposure or identify the real presence of PTSD. The puzzle how brain function enables the resilience to adversity and how brain dysfunctions lead to vulnerability to stress and development of PTSD and other stress-related disorders is still awaiting reliable explanation. Discovery of PTSD associated epi/genetic factors might provide reliable markers for pathogenesis, what could result in getting novel therapeutics and/or objective stratifying patients for research.
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