Themes based on exemplar quotes from the TalkStroke Forum archives
| Themes | Selected user quotes and paraphrased discussion points |
| Medicalisation of PSF | A man replied that he suffered from tiredness. (CG6) His consultant told him that tiredness is a major after effect of stroke. (SS9) She described tiredness to another user as a classic post stroke symptom. (SS30) |
| A fatigue unique to stroke | When reflecting on PSF, a man commented that he felt everybody seemed to suffer from tiredness following a stroke, further describing it as a silent disability that is not often talked about unless it is brought up in discussion. (SS8) When replying to other forum users, one woman described PSF as a stroke legacy. (SS12) One man told other users that he knew his stroke caused the fatigue he experienced after. (SS36) |
| Acceptance and normalisation of PSF | One forum user used metaphor in a response to explain the length of time she believed fatigue may last for after a stroke, telling the user that fatigue is a guest you’re stuck with and explaining that acceptance is important to be able to learn to live with it. (SS12) One man responded to a concerned forum user to assure them that their feelings were normal and all stroke survivors could relate to post stroke tiredness. (SS29) One stroke survivors husband reflected that his wife had learnt what the signs of tiredness were for her personally, and understood that they signal a need to rest. (CG5) |
| Fighting PSF | One male user highlighted that tiredness was a problem for him and he dealt with it by pushing onwards to fight the tiredness by keeping mentally and physically busy. (SS12) A woman replied that it was important to not give into the tiredness and to find strategies to combat it. (CG15) By relateing her tiredness to the brain injury, one user responded that it can be overcome and the brain can outwit the need for sleep. (SS9) |
| Survivors’ biological explanations and beliefs | One caregiver made sense of the tiredness by considering the tiredness as result of the brain damage caused by a stroke event. (CG9) A forum user wrote an affirmative response that the tiredness he often experienced was due to the brain healing. (SS17) A woman drew on information she had been given by a medical professional that PSF occurs as a result of the brain being tired. (SS18) One woman personified her brain, responding by explaining that if the brain does not get tired, it will not have the rest time necessary to heal. (SS26) |
| How survivors cope with PSF | (A) Involving healthcare professionals One man told other users that his consultant had signed him off work as unfit for the forseeable future. (SS9) Another forum user was told by her GP that tiredness was something she would have to get used to and it would improve with time. She reflected on this, writing that she needed to accept it was a part her now. (SS59) (B) Her husband had been written off by therapists. She elaborated on this by saying they still said he had reached his full potential even after significant time has passed. (CG17) (C) Lifestyle changes One forum user advised others that they needed to learn to live within their poststroke limitations and take it easy when needed. (SS39) A caregiver advised stroke survivor forum users that it was important to make plans to occupy their time, however to have a rest period if the tiredness became overwhelming. (CG24) (D) Mental versus physical recovery One forum user replied that he experienced bouts of fatigue. When describing how it felt, he used a figure of speech, saying that it knocked him for six. (SS14) A daughter responded that the tiredness was still a big problem for her mum but she reflected on the importance of her mum understanding her own capabilities to know what is and isn’t manageable. (CG13) One man voiced frustration at concentrating on his physical recovery after the stroke more than his mental recovery when discussing his fatigue. (SS14) |
CG, caregiver; PSF, poststroke fatigue; SS, stroke survivor.