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Diabetes-Related Topics in an Online Forum for Caregivers of Individuals Living With Alzheimer Disease and Related Dementias: Qualitative Inquiry

BACKGROUND: Diabetes and Alzheimer disease and related dementias (ADRD) are the seventh and sixth leading causes of death in the United States, respectively, and they coexist in many older adults. Caring for a loved one with both ADRD and diabetes is challenging and burdensome. OBJECTIVE: This study...

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Autores principales: Du, Yan, Paiva, Kristi, Cebula, Adrian, Kim, Seon, Lopez, Katrina, Li, Chengdong, White, Carole, Myneni, Sahiti, Seshadri, Sudha, Wang, Jing
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7381255/
https://www.ncbi.nlm.nih.gov/pubmed/32628119
http://dx.doi.org/10.2196/17851
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author Du, Yan
Paiva, Kristi
Cebula, Adrian
Kim, Seon
Lopez, Katrina
Li, Chengdong
White, Carole
Myneni, Sahiti
Seshadri, Sudha
Wang, Jing
author_facet Du, Yan
Paiva, Kristi
Cebula, Adrian
Kim, Seon
Lopez, Katrina
Li, Chengdong
White, Carole
Myneni, Sahiti
Seshadri, Sudha
Wang, Jing
author_sort Du, Yan
collection PubMed
description BACKGROUND: Diabetes and Alzheimer disease and related dementias (ADRD) are the seventh and sixth leading causes of death in the United States, respectively, and they coexist in many older adults. Caring for a loved one with both ADRD and diabetes is challenging and burdensome. OBJECTIVE: This study aims to explore diabetes-related topics in the Alzheimer’s Association ALZConnected caregiver forum by family caregivers of persons living with ADRD. METHODS: User posts on the Alzheimer’s Association ALZConnected caregiver forum were extracted. A total of 528 posts related to diabetes were included in the analysis. Of the users who generated the 528 posts, approximately 96.1% (275/286) were relatives of the care recipient with ADRD (eg, child, grandchild, spouse, sibling, or unspecified relative). Two researchers analyzed the data independently using thematic analysis. Any divergence was discussed among the research team, and an agreement was reached with a senior researcher’s input as deemed necessary. RESULTS: Thematic analysis revealed 7 key themes. The results showed that comorbidities of ADRD were common topics of discussions among family caregivers. Diabetes management in ADRD challenged family caregivers. Family caregivers might neglect their own health care because of the caring burden, and they reported poor health outcomes and reduced quality of life. The online forum provided a platform for family caregivers to seek support in their attempts to learn more about how to manage the ADRD of their care recipients and seek support for managing their own lives as caregivers. CONCLUSIONS: The ALZConnected forum provided a platform for caregivers to seek informational and emotional support for caring for persons living with ADRD and diabetes. The overwhelming burdens with these two health conditions were apparent for both caregivers and care recipients based on discussions from the online forum. Studies are urgently needed to provide practical guidelines and interventions for diabetes management in individuals with diabetes and ADRD. Future studies to explore delivering diabetes management interventions through online communities in caregivers and their care recipients with ADRD and diabetes are warranted.
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spelling pubmed-73812552020-08-07 Diabetes-Related Topics in an Online Forum for Caregivers of Individuals Living With Alzheimer Disease and Related Dementias: Qualitative Inquiry Du, Yan Paiva, Kristi Cebula, Adrian Kim, Seon Lopez, Katrina Li, Chengdong White, Carole Myneni, Sahiti Seshadri, Sudha Wang, Jing J Med Internet Res Original Paper BACKGROUND: Diabetes and Alzheimer disease and related dementias (ADRD) are the seventh and sixth leading causes of death in the United States, respectively, and they coexist in many older adults. Caring for a loved one with both ADRD and diabetes is challenging and burdensome. OBJECTIVE: This study aims to explore diabetes-related topics in the Alzheimer’s Association ALZConnected caregiver forum by family caregivers of persons living with ADRD. METHODS: User posts on the Alzheimer’s Association ALZConnected caregiver forum were extracted. A total of 528 posts related to diabetes were included in the analysis. Of the users who generated the 528 posts, approximately 96.1% (275/286) were relatives of the care recipient with ADRD (eg, child, grandchild, spouse, sibling, or unspecified relative). Two researchers analyzed the data independently using thematic analysis. Any divergence was discussed among the research team, and an agreement was reached with a senior researcher’s input as deemed necessary. RESULTS: Thematic analysis revealed 7 key themes. The results showed that comorbidities of ADRD were common topics of discussions among family caregivers. Diabetes management in ADRD challenged family caregivers. Family caregivers might neglect their own health care because of the caring burden, and they reported poor health outcomes and reduced quality of life. The online forum provided a platform for family caregivers to seek support in their attempts to learn more about how to manage the ADRD of their care recipients and seek support for managing their own lives as caregivers. CONCLUSIONS: The ALZConnected forum provided a platform for caregivers to seek informational and emotional support for caring for persons living with ADRD and diabetes. The overwhelming burdens with these two health conditions were apparent for both caregivers and care recipients based on discussions from the online forum. Studies are urgently needed to provide practical guidelines and interventions for diabetes management in individuals with diabetes and ADRD. Future studies to explore delivering diabetes management interventions through online communities in caregivers and their care recipients with ADRD and diabetes are warranted. JMIR Publications 2020-07-06 /pmc/articles/PMC7381255/ /pubmed/32628119 http://dx.doi.org/10.2196/17851 Text en ©Yan Du, Kristi Paiva, Adrian Cebula, Seon Kim, Katrina Lopez, Chengdong Li, Carole White, Sahiti Myneni, Sudha Seshadri, Jing Wang. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 06.07.2020. https://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.
spellingShingle Original Paper
Du, Yan
Paiva, Kristi
Cebula, Adrian
Kim, Seon
Lopez, Katrina
Li, Chengdong
White, Carole
Myneni, Sahiti
Seshadri, Sudha
Wang, Jing
Diabetes-Related Topics in an Online Forum for Caregivers of Individuals Living With Alzheimer Disease and Related Dementias: Qualitative Inquiry
title Diabetes-Related Topics in an Online Forum for Caregivers of Individuals Living With Alzheimer Disease and Related Dementias: Qualitative Inquiry
title_full Diabetes-Related Topics in an Online Forum for Caregivers of Individuals Living With Alzheimer Disease and Related Dementias: Qualitative Inquiry
title_fullStr Diabetes-Related Topics in an Online Forum for Caregivers of Individuals Living With Alzheimer Disease and Related Dementias: Qualitative Inquiry
title_full_unstemmed Diabetes-Related Topics in an Online Forum for Caregivers of Individuals Living With Alzheimer Disease and Related Dementias: Qualitative Inquiry
title_short Diabetes-Related Topics in an Online Forum for Caregivers of Individuals Living With Alzheimer Disease and Related Dementias: Qualitative Inquiry
title_sort diabetes-related topics in an online forum for caregivers of individuals living with alzheimer disease and related dementias: qualitative inquiry
topic Original Paper
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7381255/
https://www.ncbi.nlm.nih.gov/pubmed/32628119
http://dx.doi.org/10.2196/17851
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