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Information needs and experiences from pregnancies complicated by hypertensive disorders: a qualitative analysis of narrative responses
BACKGROUND: Incorporation of the patient voice is urgently needed in a broad array of health care settings, but it is particularly lacking in the obstetrical literature. Systematically derived information about patients’ experience with hypertensive disorders of pregnancy (HDP), most notably preecla...
Autores principales: | , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2021
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8561882/ https://www.ncbi.nlm.nih.gov/pubmed/34724906 http://dx.doi.org/10.1186/s12884-021-04219-0 |
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author | Shree, Raj Hatfield-Timajchy, Kendra Brewer, Alina Tsigas, Eleni Vidler, Marianne |
author_facet | Shree, Raj Hatfield-Timajchy, Kendra Brewer, Alina Tsigas, Eleni Vidler, Marianne |
author_sort | Shree, Raj |
collection | PubMed |
description | BACKGROUND: Incorporation of the patient voice is urgently needed in a broad array of health care settings, but it is particularly lacking in the obstetrical literature. Systematically derived information about patients’ experience with hypertensive disorders of pregnancy (HDP), most notably preeclampsia, is necessary to improve patient-provider communication and ultimately inform patient-centered care and research. We sought to examine the information needs and experiences of individuals with pregnancies complicated by hypertensive disorders. METHODS: We conducted a qualitative content analysis of narrative-responses to an open-ended question from the Preeclampsia Registry (TPR), an online registry hosted by the Preeclampsia Foundation. Individuals were invited to enroll in TPR via social media, web searches, and newsletters. We restricted our analysis to participants who self-reported a history of HDP and responded to the open-ended question, “Is there any information that you could have had at the time of this pregnancy that would have been helpful?”. Available responses from July 2013 to March 2017 were included. Narrative responses were coded, reconciled, and thematically analyzed by multiple coders using an inductive approach. Our main outcome measures included participants’ expressed needs and additional concerns with respect to their HDP pregnancy. RESULTS: Of 3202 enrolled participants, 1850 completed the survey and self-reported having at least one pregnancy complicated by HDP, of which 895 (48.4%) responded to the open-ended question. Participants delivered in the United States (83%) and 27 other countries. Compared to non-responders, responders reported more severe HDP phenotypes and adverse offspring outcomes. We identified three principal themes from responses: patient-identified needs, management and counseling, and potential action. Responses revealed that participants’ baseline understanding of HDP, including symptoms, management, therapeutic strategies, and postpartum complications, was demonstrably lacking. Responders strongly desired improved counseling so that both they and their providers could collaboratively diagnose, appropriately manage, and robustly and continuously communicate to facilitate a partnership to address any HDP complications. CONCLUSIONS: Participants’ responses regarding their HDP experience provide indispensable insight into the patient’s perspectives. Our study suggests that improved education regarding possible HDP complications and transparency about the consideration of HDP and its associated outcomes during an evaluation are needed, and efforts to implement these strategies should be sought. TRIAL REGISTRATION: The Preeclampsia Registry: NCT02020174 |
format | Online Article Text |
id | pubmed-8561882 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-85618822021-11-03 Information needs and experiences from pregnancies complicated by hypertensive disorders: a qualitative analysis of narrative responses Shree, Raj Hatfield-Timajchy, Kendra Brewer, Alina Tsigas, Eleni Vidler, Marianne BMC Pregnancy Childbirth Research BACKGROUND: Incorporation of the patient voice is urgently needed in a broad array of health care settings, but it is particularly lacking in the obstetrical literature. Systematically derived information about patients’ experience with hypertensive disorders of pregnancy (HDP), most notably preeclampsia, is necessary to improve patient-provider communication and ultimately inform patient-centered care and research. We sought to examine the information needs and experiences of individuals with pregnancies complicated by hypertensive disorders. METHODS: We conducted a qualitative content analysis of narrative-responses to an open-ended question from the Preeclampsia Registry (TPR), an online registry hosted by the Preeclampsia Foundation. Individuals were invited to enroll in TPR via social media, web searches, and newsletters. We restricted our analysis to participants who self-reported a history of HDP and responded to the open-ended question, “Is there any information that you could have had at the time of this pregnancy that would have been helpful?”. Available responses from July 2013 to March 2017 were included. Narrative responses were coded, reconciled, and thematically analyzed by multiple coders using an inductive approach. Our main outcome measures included participants’ expressed needs and additional concerns with respect to their HDP pregnancy. RESULTS: Of 3202 enrolled participants, 1850 completed the survey and self-reported having at least one pregnancy complicated by HDP, of which 895 (48.4%) responded to the open-ended question. Participants delivered in the United States (83%) and 27 other countries. Compared to non-responders, responders reported more severe HDP phenotypes and adverse offspring outcomes. We identified three principal themes from responses: patient-identified needs, management and counseling, and potential action. Responses revealed that participants’ baseline understanding of HDP, including symptoms, management, therapeutic strategies, and postpartum complications, was demonstrably lacking. Responders strongly desired improved counseling so that both they and their providers could collaboratively diagnose, appropriately manage, and robustly and continuously communicate to facilitate a partnership to address any HDP complications. CONCLUSIONS: Participants’ responses regarding their HDP experience provide indispensable insight into the patient’s perspectives. Our study suggests that improved education regarding possible HDP complications and transparency about the consideration of HDP and its associated outcomes during an evaluation are needed, and efforts to implement these strategies should be sought. TRIAL REGISTRATION: The Preeclampsia Registry: NCT02020174 BioMed Central 2021-11-02 /pmc/articles/PMC8561882/ /pubmed/34724906 http://dx.doi.org/10.1186/s12884-021-04219-0 Text en © The Author(s) 2021 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data. |
spellingShingle | Research Shree, Raj Hatfield-Timajchy, Kendra Brewer, Alina Tsigas, Eleni Vidler, Marianne Information needs and experiences from pregnancies complicated by hypertensive disorders: a qualitative analysis of narrative responses |
title | Information needs and experiences from pregnancies complicated by hypertensive disorders: a qualitative analysis of narrative responses |
title_full | Information needs and experiences from pregnancies complicated by hypertensive disorders: a qualitative analysis of narrative responses |
title_fullStr | Information needs and experiences from pregnancies complicated by hypertensive disorders: a qualitative analysis of narrative responses |
title_full_unstemmed | Information needs and experiences from pregnancies complicated by hypertensive disorders: a qualitative analysis of narrative responses |
title_short | Information needs and experiences from pregnancies complicated by hypertensive disorders: a qualitative analysis of narrative responses |
title_sort | information needs and experiences from pregnancies complicated by hypertensive disorders: a qualitative analysis of narrative responses |
topic | Research |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8561882/ https://www.ncbi.nlm.nih.gov/pubmed/34724906 http://dx.doi.org/10.1186/s12884-021-04219-0 |
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