”I call it Big Brother”: Patients’ experiences of a computer vision based examination of nocturnal epilepsy seizures
Makkonen, Jouko (2020)
2020
Master's Programme in Human-Technology Interaction
Informaatioteknologian ja viestinnän tiedekunta - Faculty of Information Technology and Communication Sciences
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Hyväksymispäivämäärä
2020-10-14
Julkaisun pysyvä osoite on
https://urn.fi/URN:NBN:fi:tuni-202009277133
https://urn.fi/URN:NBN:fi:tuni-202009277133
Tiivistelmä
This study investigates patients’ experiences of a computer vision based home examination service of nocturnal epilepsy seizures. In the Nelli examination video, audio and depth-sensor data are recorded when a patient sleeps. An algorithm recognizes the seizures. The primary research question is to understand the user experience and other experiences of the patients and their caretakers in the use of the Nelli examination at home. As a part of this, user journeys, the role of information, and experienced behavioral effects of the examination service are investigated.
Seven participants were interviewed using semi-structured interviews, and one participant’s key-contact points with the service were observed. Qualitative analysis based on the grounded theory approach was applied to the data. Six themes were found: (1) Experiences of the use were mainly positive; (2) Privacy concerned and influenced the behavior of the participants. However, clinical purposes made that accepted; (3) Lack of information was a significant theme of negative experiences; Users’ expectations, prepossessions, or other experienced or mental input to the interaction, i.e., their (4) needs and (5) motivations influenced their experiences; (6) Patient experience has a holistic nature and is influenced by extra-use factors, e.g., patient’s history with the disease, the treatment of it and the healthcare process.
As a practical implication, design guidelines for the content of a patient tutorial were produced, covering aspects of (1) simplicity; (2) access to more information; (3) concerns about privacy and need for information about it; (4) the needs and motivations of users; (5) user questions about Nelli and its context due to the high importance of those in patients’ lives.
This research strengthens the previous findings that benefits for clinical treatment are significant motivators for overcoming downsides of self-monitoring for patients or their family members, patients need information about how they are being examined and experience the lack of it negatively, and that patient experience has a holistic nature which is not limited to the user experience of home-monitoring. For instance, the severity of the patient’s medical condition impacts the experienced downsides and motivations to overcome those and the information needs. However, how different conditions influence experiences is a matter of future research.
Seven participants were interviewed using semi-structured interviews, and one participant’s key-contact points with the service were observed. Qualitative analysis based on the grounded theory approach was applied to the data. Six themes were found: (1) Experiences of the use were mainly positive; (2) Privacy concerned and influenced the behavior of the participants. However, clinical purposes made that accepted; (3) Lack of information was a significant theme of negative experiences; Users’ expectations, prepossessions, or other experienced or mental input to the interaction, i.e., their (4) needs and (5) motivations influenced their experiences; (6) Patient experience has a holistic nature and is influenced by extra-use factors, e.g., patient’s history with the disease, the treatment of it and the healthcare process.
As a practical implication, design guidelines for the content of a patient tutorial were produced, covering aspects of (1) simplicity; (2) access to more information; (3) concerns about privacy and need for information about it; (4) the needs and motivations of users; (5) user questions about Nelli and its context due to the high importance of those in patients’ lives.
This research strengthens the previous findings that benefits for clinical treatment are significant motivators for overcoming downsides of self-monitoring for patients or their family members, patients need information about how they are being examined and experience the lack of it negatively, and that patient experience has a holistic nature which is not limited to the user experience of home-monitoring. For instance, the severity of the patient’s medical condition impacts the experienced downsides and motivations to overcome those and the information needs. However, how different conditions influence experiences is a matter of future research.