Beyond the physical: A qualitative assessment of the burden of symptomatic uterine fibroids on women's emotional and psychosocial health

Ghant, M.S.; Sengoba, K.S.; Recht, Hannah S.; Cameron, Kenzie A.; Lawson, Angela K.; Marsh, Erica E.

doi:10.1016/j.jpsychores.2014.12.016

Cited by 95 publications

(93 citation statements)

References 24 publications

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“…Fibroids affect up to 65% of all women by the age of 50, but the prevalence is closer to 90% in African-American women (AAW) [1]. Although not all fibroids are symptomatic, up to 20–50% of women affected can experience sequelae which include pelvic pressure or pain, reproductive problems, depression and emotional problems and heavy menstrual bleeding that can lead to anemia [2, 3]. As a result, uterine fibroids are the leading cause of hysterectomy in the United States and a serious public health issue.…”

Section: Introductionmentioning

confidence: 99%

Racial/Ethnic Differences in Women’s Experiences with Symptomatic Uterine Fibroids: a Qualitative Assessment

Sengoba¹,

Ghant

Okeigwe³

et al. 2016

J. Racial and Ethnic Health Disparities

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Objective To determine racial/ethnic differences in treatment experiences and expectations among women with fibroids. Methods Sixty women with symptomatic uterine fibroids completed semi-structured interviews, demographic surveys and a health literacy assessment. Participants were recruited from community-based organizations and health care organizations. Data from interviews were analyzed using a grounded theory approach. Three coders identified major themes and subthemes. Results The kappa (κ) amongst coders was 0.94. The mean age of participants was 43.0 ± 6.8 (mean ± SD). 61.7% of subjects were African-American (AAW), 25.0% were Non-Hispanic White (WW), 8.3% were Hispanic (HW) and 5.0% were Asian (ASW). When considering treatment options, AAW were more likely to want a permanent intervention. They were also more likely to demonstrate an aversion toward conventional treatments. Of the women who received a surgical intervention, AAW were also more likely to have had a difficult recovery and to be dissatisfied with their treatment. Finally, AAW disproportionately expressed concern regarding financial challenges. Conclusions AAW have high treatment expectations, have more financial obstacles, and are less satisfied with their treatment outcomes than women of other racial/ethnic groups. Our findings suggest a need to create targeted patient interventions and education to ameliorate these disparities in experience.

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Section: Introductionmentioning

confidence: 99%

Racial/Ethnic Differences in Women’s Experiences with Symptomatic Uterine Fibroids: a Qualitative Assessment

Sengoba¹,

Ghant

Okeigwe³

et al. 2016

J. Racial and Ethnic Health Disparities

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“…7,8 While limited, a few qualitative studies have assessed women with fibroids and found that the tumors can lead to severe psychosocial suffering and have an overall negative impact on women's health-related quality of life. [9][10][11] Despite the chronic nature of fibroids and their negative effect on women's lives, many women wait several years before seeking treatment for their tumors. 7,12 Furthermore, there are minimal data qualitatively characterizing the perceptions and beliefs of women with fibroids to address why they continue to live with the tumors without seeking treatment.…”

mentioning

confidence: 99%

An Altered Perception of Normal: Understanding Causes for Treatment Delay in Women with Symptomatic Uterine Fibroids

Ghant

Sengoba

Vogelzang

et al. 2016

Journal of Women's Health

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Background: Uterine fibroids are benign tumors that are the leading cause of hysterectomy in the United States. Despite their high prevalence and associated morbidity, there are little qualitative data characterizing what drives women's treatment-seeking behavior for their fibroids. Methods: Women with symptomatic or recently treated uterine fibroids completed in-depth interviews and demographic surveys. Interviews were transcribed verbatim and uploaded to NVivo version 10 for data management and thematic coding. Coders identified major themes and subthemes that emerged from the interviews. Results: Sixty women (n = 60) completed the interviews. The kappa among coders was 0.94. The mean age of participants was 43.0 -6.8. 61.7% of participants self-identified as African American, 25.0% as Caucasian, 8.3% as Hispanic, and 5.0% as Asian. Many women reported obtaining a delayed diagnosis for their uterine fibroids despite experiencing severe symptoms. There were five subthemes that identified why women delayed seeking treatment, which included the perception that their symptoms were ''normal,'' they had a low knowledge of fibroids, they did not perceive themselves to be at risk for fibroids, they engaged in avoidancebased coping strategies, and/or they dissociated themselves from their fibroids. Conclusions: Many women with symptomatic fibroids live with this condition chronically without seeking care. It appears that for some, limited knowledge regarding fibroids and normal menstruation may lead to a distorted view of what is normal with regard to uterine bleeding, resulting in limited treatment seeking behavior. Others know their symptoms are abnormal but simply avoid the problem. There is a need for patient-centered and community-based education to improve women's knowledge of fibroids and symptoms and to promote treatment options.

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“…In 2015, Ghant et al published one of the first studies which qualitatively examined primarily AAW’s perspectives regarding fibroids. 56 This found that women with fibroids experienced psychological stress (including fear of dying) and a sense of loss of control over their body. For example, one woman in the study stated: “I became a little worried because I am like something is wrong with me and I don't understand it.…”

Section: Racial/ethnic Minoritiesmentioning

confidence: 99%

Hearing the Silenced Voices of Underserved Women

Lawson

Marsh

2017

Obstetrics and Gynecology Clinics of North America

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Summary for Indexing In order to provide effective evidence-based health care to women, rigorous research that examines women’s lived experiences in their own voices in needed. However, clinical health research has often excluded the experiences of women and minority patient populations. Further, clinical research has often relied on quantitative research strategies; this provides an interesting but limited understanding of women’s health experiences and hinders the provision of effective patient-centered care. In this review, we define qualitative research and its unique contributions to research, and provide examples of how qualitative research has given insights into the reproductive health perspectives and behaviors of underserved women.

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Beyond the physical: A qualitative assessment of the burden of symptomatic uterine fibroids on women's emotional and psychosocial health

Cited by 95 publications

References 24 publications

Racial/Ethnic Differences in Women’s Experiences with Symptomatic Uterine Fibroids: a Qualitative Assessment

Racial/Ethnic Differences in Women’s Experiences with Symptomatic Uterine Fibroids: a Qualitative Assessment

An Altered Perception of Normal: Understanding Causes for Treatment Delay in Women with Symptomatic Uterine Fibroids

Hearing the Silenced Voices of Underserved Women

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