Implications of Public Disclosure of Personal Information in a Mobile Alert App for People Living With Dementia Who Go Missing: Qualitative Descriptive Study
BackgroundPeople living with dementia are at risk of getting lost and going missing due to memory loss, confusion, and disorientation. Missing person incidents involving people living with dementia are increasing. Alert systems such as Community ASAP can promote community eng...
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| Language: | English |
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JMIR Publications
2025-02-01
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| Series: | JMIR Aging |
| Online Access: | https://aging.jmir.org/2025/1/e64847 |
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| author | Adebusola Adekoya Christine Daum Noelannah Neubauer Antonio Miguel-Cruz Lili Liu |
| author_facet | Adebusola Adekoya Christine Daum Noelannah Neubauer Antonio Miguel-Cruz Lili Liu |
| author_sort | Adebusola Adekoya |
| collection | DOAJ |
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BackgroundPeople living with dementia are at risk of getting lost and going missing due to memory loss, confusion, and disorientation. Missing person incidents involving people living with dementia are increasing. Alert systems such as Community ASAP can promote community engagement in locating missing persons with dementia and aid in search and rescue efforts. However, the implications of public disclosure of personal information such as name, age, sex, and physical description within such alert systems have yet to be explored.
ObjectiveThis study aimed to identify and discuss the implications of public disclosure of personal information in Community ASAP for people living with dementia at risk of going missing.
MethodsThis study used a qualitative descriptive research design drawing from naturalistic inquiry. A total of 19 participants including people living with dementia, care partners, first responders, and service providers were recruited from Ontario, Alberta, and British Columbia, Canada. Semistructured interviews were used to explore participants’ perspectives on the perceived implications of the release of personal information when using Community ASAP. NVivo (version 12) was used to manage data, and conventional content analysis was conducted to identify key themes of the implications of public disclosure of personal information in Community ASAP.
ResultsIn total, 10/19 (53%) of the participants were women and 9/19 (47%) were men. Of the 19 participants, 3 (16%) were people living with dementia, 5 (26%) were care partners, 4 (21%) were first responders, and 7 (37%) were service providers. In total, 4 key themes were identified as implications of public disclosure of personal information in Community ASAP: right to autonomy, safety versus privacy, informed and knowledgeable consent, and stigmatization. Participants discussed how the public disclosure of personal information in Community ASAP could undermine a person’s choice not to be found and contribute to stigmatization. Participants emphasized a need to balance safety and privacy concerns. Informed and knowledgeable consent is important when using an alert system to locate missing persons with dementia.
ConclusionsCommunity ASAP can promote community engagement in locating missing persons with dementia. However, the public disclosure of personal information in alert systems has implications. Users’ right to autonomy, a balance between safety and privacy, informed and knowledgeable consent, and risks of stigmatization are perceived impacts of disclosure of personal information in alert systems. |
| format | Article |
| id | doaj-art-fcf7304b93d94057a0e75dfc05fb1a47 |
| institution | Kabale University |
| issn | 2561-7605 |
| language | English |
| publishDate | 2025-02-01 |
| publisher | JMIR Publications |
| record_format | Article |
| series | JMIR Aging |
| spelling | doaj-art-fcf7304b93d94057a0e75dfc05fb1a472025-02-07T13:31:29ZengJMIR PublicationsJMIR Aging2561-76052025-02-018e6484710.2196/64847Implications of Public Disclosure of Personal Information in a Mobile Alert App for People Living With Dementia Who Go Missing: Qualitative Descriptive StudyAdebusola Adekoyahttps://orcid.org/0000-0002-8131-8832Christine Daumhttps://orcid.org/0000-0001-5555-3698Noelannah Neubauerhttps://orcid.org/0000-0001-7040-2943Antonio Miguel-Cruzhttps://orcid.org/0000-0003-1618-8733Lili Liuhttps://orcid.org/0000-0001-7082-4898 BackgroundPeople living with dementia are at risk of getting lost and going missing due to memory loss, confusion, and disorientation. Missing person incidents involving people living with dementia are increasing. Alert systems such as Community ASAP can promote community engagement in locating missing persons with dementia and aid in search and rescue efforts. However, the implications of public disclosure of personal information such as name, age, sex, and physical description within such alert systems have yet to be explored. ObjectiveThis study aimed to identify and discuss the implications of public disclosure of personal information in Community ASAP for people living with dementia at risk of going missing. MethodsThis study used a qualitative descriptive research design drawing from naturalistic inquiry. A total of 19 participants including people living with dementia, care partners, first responders, and service providers were recruited from Ontario, Alberta, and British Columbia, Canada. Semistructured interviews were used to explore participants’ perspectives on the perceived implications of the release of personal information when using Community ASAP. NVivo (version 12) was used to manage data, and conventional content analysis was conducted to identify key themes of the implications of public disclosure of personal information in Community ASAP. ResultsIn total, 10/19 (53%) of the participants were women and 9/19 (47%) were men. Of the 19 participants, 3 (16%) were people living with dementia, 5 (26%) were care partners, 4 (21%) were first responders, and 7 (37%) were service providers. In total, 4 key themes were identified as implications of public disclosure of personal information in Community ASAP: right to autonomy, safety versus privacy, informed and knowledgeable consent, and stigmatization. Participants discussed how the public disclosure of personal information in Community ASAP could undermine a person’s choice not to be found and contribute to stigmatization. Participants emphasized a need to balance safety and privacy concerns. Informed and knowledgeable consent is important when using an alert system to locate missing persons with dementia. ConclusionsCommunity ASAP can promote community engagement in locating missing persons with dementia. However, the public disclosure of personal information in alert systems has implications. Users’ right to autonomy, a balance between safety and privacy, informed and knowledgeable consent, and risks of stigmatization are perceived impacts of disclosure of personal information in alert systems.https://aging.jmir.org/2025/1/e64847 |
| spellingShingle | Adebusola Adekoya Christine Daum Noelannah Neubauer Antonio Miguel-Cruz Lili Liu Implications of Public Disclosure of Personal Information in a Mobile Alert App for People Living With Dementia Who Go Missing: Qualitative Descriptive Study JMIR Aging |
| title | Implications of Public Disclosure of Personal Information in a Mobile Alert App for People Living With Dementia Who Go Missing: Qualitative Descriptive Study |
| title_full | Implications of Public Disclosure of Personal Information in a Mobile Alert App for People Living With Dementia Who Go Missing: Qualitative Descriptive Study |
| title_fullStr | Implications of Public Disclosure of Personal Information in a Mobile Alert App for People Living With Dementia Who Go Missing: Qualitative Descriptive Study |
| title_full_unstemmed | Implications of Public Disclosure of Personal Information in a Mobile Alert App for People Living With Dementia Who Go Missing: Qualitative Descriptive Study |
| title_short | Implications of Public Disclosure of Personal Information in a Mobile Alert App for People Living With Dementia Who Go Missing: Qualitative Descriptive Study |
| title_sort | implications of public disclosure of personal information in a mobile alert app for people living with dementia who go missing qualitative descriptive study |
| url | https://aging.jmir.org/2025/1/e64847 |
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