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“THEY DON’T TELL YOU ANYTHING”: ETHICS OF PRIVACY AND SOCIAL RELATIONSHIPS IN ASSISTED LIVING
The Health Insurance Portability and Accountability Act was developed to ensure patient privacy. Yet in assisted living (AL), social connectedness—which is associated with positive sense of self and well-being—may conflict with privacy regulations restricting information sharing. These regulations,...
Autores principales: | , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Oxford University Press
2019
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6845541/ http://dx.doi.org/10.1093/geroni/igz038.3327 |
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author | Cooke, Emma Perkins, Molly M Doyle, Patrick Kinlaw, Kathy Wack, Kevin Vandenberg, Ann E |
author_facet | Cooke, Emma Perkins, Molly M Doyle, Patrick Kinlaw, Kathy Wack, Kevin Vandenberg, Ann E |
author_sort | Cooke, Emma |
collection | PubMed |
description | The Health Insurance Portability and Accountability Act was developed to ensure patient privacy. Yet in assisted living (AL), social connectedness—which is associated with positive sense of self and well-being—may conflict with privacy regulations restricting information sharing. These regulations, while intended to protect, rely on a traditional conception of autonomy that foregrounds self-determination, freedom of choice, and freedom from outside interference, rather than a relational definition that acknowledges dependency, interdependence, and care relationships. We sought to identify health information sharing practices in AL that help or hinder residents’ ability to maintain a positive sense of self. We conducted a thematic analysis with secondary data (61 interviews with residents and their informal and formal caregivers, 916 hours of ethnographic observation) from one large (125 beds) AL community in Atlanta enrolled in a 5-year NIA-funded end-of-life study (5R01AG047408). We examined these data to determine how health information is shared in AL, and the valence of different sharing practices. Findings showed that exchanging information about shared life stage and health circumstances built community within AL. Conversely, receiving partial or inadequate health information frustrated residents. Medical information could be inferred from environmental cues, but many residents felt these cues harmfully “medicalized” social space. Negotiating privacy boundaries required staff and resident compromise. These results indicate divergence between AL policies intended to preserve privacy, and resident values emphasizing social relationships and bonding. A relational perspective may be valuable in developing alternatives for residents wishing to share health information with peers. |
format | Online Article Text |
id | pubmed-6845541 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2019 |
publisher | Oxford University Press |
record_format | MEDLINE/PubMed |
spelling | pubmed-68455412019-11-18 “THEY DON’T TELL YOU ANYTHING”: ETHICS OF PRIVACY AND SOCIAL RELATIONSHIPS IN ASSISTED LIVING Cooke, Emma Perkins, Molly M Doyle, Patrick Kinlaw, Kathy Wack, Kevin Vandenberg, Ann E Innov Aging Session Lb2570 (Late Breaking Poster) The Health Insurance Portability and Accountability Act was developed to ensure patient privacy. Yet in assisted living (AL), social connectedness—which is associated with positive sense of self and well-being—may conflict with privacy regulations restricting information sharing. These regulations, while intended to protect, rely on a traditional conception of autonomy that foregrounds self-determination, freedom of choice, and freedom from outside interference, rather than a relational definition that acknowledges dependency, interdependence, and care relationships. We sought to identify health information sharing practices in AL that help or hinder residents’ ability to maintain a positive sense of self. We conducted a thematic analysis with secondary data (61 interviews with residents and their informal and formal caregivers, 916 hours of ethnographic observation) from one large (125 beds) AL community in Atlanta enrolled in a 5-year NIA-funded end-of-life study (5R01AG047408). We examined these data to determine how health information is shared in AL, and the valence of different sharing practices. Findings showed that exchanging information about shared life stage and health circumstances built community within AL. Conversely, receiving partial or inadequate health information frustrated residents. Medical information could be inferred from environmental cues, but many residents felt these cues harmfully “medicalized” social space. Negotiating privacy boundaries required staff and resident compromise. These results indicate divergence between AL policies intended to preserve privacy, and resident values emphasizing social relationships and bonding. A relational perspective may be valuable in developing alternatives for residents wishing to share health information with peers. Oxford University Press 2019-11-08 /pmc/articles/PMC6845541/ http://dx.doi.org/10.1093/geroni/igz038.3327 Text en © The Author(s) 2019. Published by Oxford University Press on behalf of The Gerontological Society of America. http://creativecommons.org/licenses/by/4.0/ This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited. |
spellingShingle | Session Lb2570 (Late Breaking Poster) Cooke, Emma Perkins, Molly M Doyle, Patrick Kinlaw, Kathy Wack, Kevin Vandenberg, Ann E “THEY DON’T TELL YOU ANYTHING”: ETHICS OF PRIVACY AND SOCIAL RELATIONSHIPS IN ASSISTED LIVING |
title | “THEY DON’T TELL YOU ANYTHING”: ETHICS OF PRIVACY AND SOCIAL RELATIONSHIPS IN ASSISTED LIVING |
title_full | “THEY DON’T TELL YOU ANYTHING”: ETHICS OF PRIVACY AND SOCIAL RELATIONSHIPS IN ASSISTED LIVING |
title_fullStr | “THEY DON’T TELL YOU ANYTHING”: ETHICS OF PRIVACY AND SOCIAL RELATIONSHIPS IN ASSISTED LIVING |
title_full_unstemmed | “THEY DON’T TELL YOU ANYTHING”: ETHICS OF PRIVACY AND SOCIAL RELATIONSHIPS IN ASSISTED LIVING |
title_short | “THEY DON’T TELL YOU ANYTHING”: ETHICS OF PRIVACY AND SOCIAL RELATIONSHIPS IN ASSISTED LIVING |
title_sort | “they don’t tell you anything”: ethics of privacy and social relationships in assisted living |
topic | Session Lb2570 (Late Breaking Poster) |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6845541/ http://dx.doi.org/10.1093/geroni/igz038.3327 |
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