Exploring the Parkinson patients' perspective on home-based video recording for movement analysis: a qualitative study

N.M. de Vries (Corresponding author), K. Smilowska, J. Hummelink, B. Abramiuc, M.M. van Gilst, B.R. Bloem, P.H.N. de With, S. Overeem

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

BACKGROUND: Parkinson's disease is a complex neurological disorder characterized by a variety of motor- as well as non-motor symptoms. Video-based technology (using continuous home monitoring) may bridge the gap between the fragmented in-clinic observations and the need for a comprehensive understanding of the progression and fluctuation of disease symptoms. However, continuous monitoring can be intrusive, raising questions about feasibility as well as potential privacy violation.

METHODS: We used a grounded theory approach in which we performed semi-structured interviews to explore the opinion of Parkinson's patients on home-based video recording used for vision-based movement analysis.

RESULTS: Saturation was reached after sixteen interviews. Three first-level themes were identified that specify the conditions required to perform continuous video monitoring: Camera recording (e.g. being able to turn off the camera), privacy protection (e.g. patient's behaviour, patient's consent, camera location) and perceived motivation (e.g. contributing to science or clinical practice).

CONCLUSION: Our findings show that Parkinson patients' perception of continuous, home-based video recording is positive, when a number of requirements are taken into account. This knowledge will enable us to start using this technology in future research and clinical practice in order to better understand the disease and to objectify outcomes in the patients' own homes.

LanguageEnglish
Article number71
Number of pages6
JournalBMC Neurology
Volume19
Issue number1
DOIs
StatePublished - 27 Apr 2019

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Video Recording
Privacy
Interviews
Technology
Nervous System Diseases
Parkinson Disease
Disease Progression
Motivation

Cite this

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title = "Exploring the Parkinson patients' perspective on home-based video recording for movement analysis: a qualitative study",
abstract = "BACKGROUND: Parkinson's disease is a complex neurological disorder characterized by a variety of motor- as well as non-motor symptoms. Video-based technology (using continuous home monitoring) may bridge the gap between the fragmented in-clinic observations and the need for a comprehensive understanding of the progression and fluctuation of disease symptoms. However, continuous monitoring can be intrusive, raising questions about feasibility as well as potential privacy violation.METHODS: We used a grounded theory approach in which we performed semi-structured interviews to explore the opinion of Parkinson's patients on home-based video recording used for vision-based movement analysis.RESULTS: Saturation was reached after sixteen interviews. Three first-level themes were identified that specify the conditions required to perform continuous video monitoring: Camera recording (e.g. being able to turn off the camera), privacy protection (e.g. patient's behaviour, patient's consent, camera location) and perceived motivation (e.g. contributing to science or clinical practice).CONCLUSION: Our findings show that Parkinson patients' perception of continuous, home-based video recording is positive, when a number of requirements are taken into account. This knowledge will enable us to start using this technology in future research and clinical practice in order to better understand the disease and to objectify outcomes in the patients' own homes.",
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Exploring the Parkinson patients' perspective on home-based video recording for movement analysis : a qualitative study. / de Vries, N.M. (Corresponding author); Smilowska, K.; Hummelink, J.; Abramiuc, B.; van Gilst, M.M.; Bloem, B.R.; de With, P.H.N.; Overeem, S.

In: BMC Neurology, Vol. 19, No. 1, 71, 27.04.2019.

Research output: Contribution to journalArticleAcademicpeer-review

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AU - de With,P.H.N.

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N2 - BACKGROUND: Parkinson's disease is a complex neurological disorder characterized by a variety of motor- as well as non-motor symptoms. Video-based technology (using continuous home monitoring) may bridge the gap between the fragmented in-clinic observations and the need for a comprehensive understanding of the progression and fluctuation of disease symptoms. However, continuous monitoring can be intrusive, raising questions about feasibility as well as potential privacy violation.METHODS: We used a grounded theory approach in which we performed semi-structured interviews to explore the opinion of Parkinson's patients on home-based video recording used for vision-based movement analysis.RESULTS: Saturation was reached after sixteen interviews. Three first-level themes were identified that specify the conditions required to perform continuous video monitoring: Camera recording (e.g. being able to turn off the camera), privacy protection (e.g. patient's behaviour, patient's consent, camera location) and perceived motivation (e.g. contributing to science or clinical practice).CONCLUSION: Our findings show that Parkinson patients' perception of continuous, home-based video recording is positive, when a number of requirements are taken into account. This knowledge will enable us to start using this technology in future research and clinical practice in order to better understand the disease and to objectify outcomes in the patients' own homes.

AB - BACKGROUND: Parkinson's disease is a complex neurological disorder characterized by a variety of motor- as well as non-motor symptoms. Video-based technology (using continuous home monitoring) may bridge the gap between the fragmented in-clinic observations and the need for a comprehensive understanding of the progression and fluctuation of disease symptoms. However, continuous monitoring can be intrusive, raising questions about feasibility as well as potential privacy violation.METHODS: We used a grounded theory approach in which we performed semi-structured interviews to explore the opinion of Parkinson's patients on home-based video recording used for vision-based movement analysis.RESULTS: Saturation was reached after sixteen interviews. Three first-level themes were identified that specify the conditions required to perform continuous video monitoring: Camera recording (e.g. being able to turn off the camera), privacy protection (e.g. patient's behaviour, patient's consent, camera location) and perceived motivation (e.g. contributing to science or clinical practice).CONCLUSION: Our findings show that Parkinson patients' perception of continuous, home-based video recording is positive, when a number of requirements are taken into account. This knowledge will enable us to start using this technology in future research and clinical practice in order to better understand the disease and to objectify outcomes in the patients' own homes.

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de Vries NM, Smilowska K, Hummelink J, Abramiuc B, van Gilst MM, Bloem BR et al. Exploring the Parkinson patients' perspective on home-based video recording for movement analysis: a qualitative study. BMC Neurology. 2019 Apr 27;19(1). 71. Available from, DOI: 10.1186/s12883-019-1301-y