The overall aim of the study was to explore how adults with PCC-POTS experienced individually tailored exercise.
A qualitative study with individual interviews, conducted remotely by phone or video, was carried out using a semi-structured interview guide. All 25 participants in a previous feasibility study (conducted in Sweden during 2021-2022, aimed to assess the feasibility of individually tailored exercise in PCC-POTS) were considered eligible. Interviews were recorded and transcribed, a qualitative content analysis with an inductive approach was used for data analysis.
Twenty-three participants (four were men) took part in the study, interviews lasted between 38-98 minutes and the participants were 24-56 years old, both hospitalized and non-hospitalized in the acute setting.
One of the themes that emerged in the initial analysis was "Ability to Exercise. The theme contained categories as “Close support by the physiotherapist”, “Setting of the intervention” and “Impact of private life”. Participants described the importance of weekly feedback by a physiotherapist. Moreover, the freedom to exercise alone or in a group enabled the implementation. The theme also included the importance of resources and support from the employer, family and in their social context. Other factors that were expressed to affect the ability to exercise were medication/pharmacological treatment and other diseases
Another theme was "Previous attitudes towards physical exercise". The participants described their desire to regain function, strong beliefs and their previous experiences that physical exercise was associated with improvements, but also "something you had to do, even if it is hard". Despite the close support from the physiotherapist, this pre-understanding sometimes led to continuing exercise even when there were signs of excessive exercise
"... I had to prioritize everything else. I wouldn't want to go to a new rehabilitation once more. You need to be completely on sick leave... I was exhausted from work and getting everything else together. But now, afterwards, I’ve become stronger, so it has helped me..."
However, almost all informants also described positive effects of the exercise in the long term and changes that affected their daily lives in a positive direction
”Yes, a huge difference... when I started, I could barely even play with the children and now I can be in the garden, sort of play football, not that I just stand still and pass the ball, but I can run a little...”
This study provides a deeper understanding of motivation, factors and experiences of exercise for people with PCC-POTS. It lays the ground for developing personalized interventions further, focusing on adjustments and opportunities to participate in rehabilitation.
In a clinical context, a holistic perspective is important, and the physiotherapist should consider individual needs and adapt the settings of rehabilitation and support.
Postural Orthostatic Tachycardia Syndrome
Qualitative Research
