Information needs and experiences from pregnancies complicated by hypertensive disorders: a qualitative analysis of narrative responses

Abstract 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...

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Autores principales:	Raj Shree, Kendra Hatfield-Timajchy, Alina Brewer, Eleni Tsigas, Marianne Vidler
Formato:	article
Lenguaje:	EN
Publicado:	BMC 2021
Materias:	Preeclampsia Hypertensive disorders of pregnancy Patient experience Qualitative research Gynecology and obstetrics RG1-991
Acceso en línea:	https://doaj.org/article/d82481adc9ef40629c63b53af83299aa
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spelling	oai:doaj.org-article:d82481adc9ef40629c63b53af83299aa2021-11-08T11:04:16ZInformation needs and experiences from pregnancies complicated by hypertensive disorders: a qualitative analysis of narrative responses10.1186/s12884-021-04219-01471-2393https://doaj.org/article/d82481adc9ef40629c63b53af83299aa2021-11-01T00:00:00Zhttps://doi.org/10.1186/s12884-021-04219-0https://doaj.org/toc/1471-2393Abstract 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: NCT02020174Raj ShreeKendra Hatfield-TimajchyAlina BrewerEleni TsigasMarianne VidlerBMCarticlePreeclampsiaHypertensive disorders of pregnancyPatient experienceQualitative researchGynecology and obstetricsRG1-991ENBMC Pregnancy and Childbirth, Vol 21, Iss 1, Pp 1-12 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Preeclampsia Hypertensive disorders of pregnancy Patient experience Qualitative research Gynecology and obstetrics RG1-991
spellingShingle	Preeclampsia Hypertensive disorders of pregnancy Patient experience Qualitative research Gynecology and obstetrics RG1-991 Raj Shree Kendra Hatfield-Timajchy Alina Brewer Eleni Tsigas Marianne Vidler Information needs and experiences from pregnancies complicated by hypertensive disorders: a qualitative analysis of narrative responses
description	Abstract 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	article
author	Raj Shree Kendra Hatfield-Timajchy Alina Brewer Eleni Tsigas Marianne Vidler
author_facet	Raj Shree Kendra Hatfield-Timajchy Alina Brewer Eleni Tsigas Marianne Vidler
author_sort	Raj Shree
title	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_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_sort	information needs and experiences from pregnancies complicated by hypertensive disorders: a qualitative analysis of narrative responses
publisher	BMC
publishDate	2021
url	https://doaj.org/article/d82481adc9ef40629c63b53af83299aa
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Information needs and experiences from pregnancies complicated by hypertensive disorders: a qualitative analysis of narrative responses

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