Table 3

Discussed person-generated health data (PGHD) utilisation effects on stroke survivors’ feelings about their health status

Feelings about health status
Stroke survivorsClinicians
  • Seeing health progress and gradual improvements makes stroke survivors feel so much better, and gives them a sense of achievement, accomplishment and satisfaction.

  • The site 2 survivor reported feeling more confident as a result of seeing her PGHD.

  • Some stroke survivors also reported potentially feeling self-awareness about their health through PGHD.

  • PGHD could allow them to measure levels of improvement or deterioration, and see if they are heading in the right direction.

  • One survivor did not think it would make them more self-aware.

  • PGHD could potentially raise feelings of disappointment and confusion.

  • If their PGHD indicates that their performance is declining, it would be discouraging and might even cause a mental health issue such as depression.

  • A mismatch between how they felt they performed and what their PGHD was showing could make them feel dejected.

  • Simply seeing percentages at the end of an exercise, as is the case with Jintronix, might also cause confusion, as it would not be clear what those percentages are measuring.

  • A site 1 survivor felt indifferent towards PGHD, because it is how they feel about doing their activities that matter.

  • PGHD could also elicit different emotions at different times.

  • Seeing PGHD progress might provide satisfaction for stroke survivors.

  • A clinician noted that survivors could have increased confidence.

  • Clinicians agree that simply providing percentages to survivors at the end of an exercise could cause confusion, as they may not understand whay they mean.

  • Clinicians think that PGHD might cause some to doubt the effectiveness of the system.

  • Two clinicians also thought that some survivors might feel indifferent, that it would not worry some people.