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患有纤维肌痛的黑人及非裔美国孕妇的支持需求与差距

Support Needs and Gaps for Black and African American Individuals With Fibromyalgia During Pregnancy.

作者信息

Matkin Katelyn, Smedema Susan, Baumunk Megan, Chun Jina, Bhattarai Muna

机构信息

Department of Rehabilitation and Health Services, University of North Texas, Denton, TX, USA.

Department of Rehabilitation Psychology and Special Education, University of Wisconsin-Madison, Madison, WI, USA.

出版信息

J Family Reprod Health. 2025 Mar;19(1):58-66. doi: 10.18502/jfrh.v19i1.18442.

Abstract

OBJECTIVE

Individuals with disabilities, including those with fibromyalgia, have historically faced barriers and stigma in healthcare settings. This issue extends to reproductive health areas, such as pregnancy. Previous research on the pregnancy experiences of individuals with disabilities has predominantly focused on physical or visible disabilities. Furthermore, many studies have overlooked the intersectionality of additional identities, including race and gender identity. This thematic analysis aimed to provide insight into the unique experience of pregnancy for individuals with fibromyalgia.

MATERIALS AND METHODS

A total of eight semi-structured interviews were conducted with participants who identified as having fibromyalgia, and had experienced a pregnancy with a live birth within the last 12 months at the time of the interview. Most participants identified as Black/African American. Interviews were analyzed using a reflective thematic analysis approach to identify key themes within the participants' responses.

RESULTS

Participants articulated four major themes concerning their experiences of pregnancy with fibromyalgia: (1) acquiring a chronic and unpredictable condition; (2) the adjustment to pregnancy and parenting; (3) building trust and addressing doubt: healthcare dynamics in fibromyalgia management; and (4) seeking and receiving social support: a multifaceted experience. Each theme contains important subthemes that reflect the dynamic and varied experiences associated with pregnancy with fibromyalgia.

CONCLUSION

This study elucidates the unique experience of pregnancy among individuals with fibromyalgia, a historically marginalized population. The findings highlight substantial opportunities for improving the pregnancy-related care provided by healthcare providers, including rehabilitation professionals, for individuals with fibromyalgia.

摘要

目的

包括纤维肌痛患者在内的残障人士在医疗环境中历来面临障碍和耻辱。这个问题延伸到生殖健康领域,比如怀孕。先前关于残障人士怀孕经历的研究主要集中在身体或明显的残疾方面。此外,许多研究忽视了包括种族和性别认同在内的其他身份的交叉性。这项主题分析旨在深入了解纤维肌痛患者怀孕的独特经历。

材料与方法

对八名自称患有纤维肌痛且在访谈时过去12个月内有过活产妊娠经历的参与者进行了半结构化访谈。大多数参与者自称是黑人/非裔美国人。采用反思性主题分析方法对访谈进行分析,以确定参与者回答中的关键主题。

结果

参与者阐述了关于他们纤维肌痛怀孕经历的四个主要主题:(1)患上一种慢性且不可预测的疾病;(2)适应怀孕和为人父母;(3)建立信任并消除疑虑:纤维肌痛管理中的医疗动态;(4)寻求和获得社会支持:多方面的经历。每个主题都包含重要的子主题,反映了与纤维肌痛怀孕相关的动态和多样的经历。

结论

本研究阐明了纤维肌痛患者(一个历史上被边缘化的群体)怀孕的独特经历。研究结果凸显了改善医疗服务提供者(包括康复专业人员)为纤维肌痛患者提供的与怀孕相关护理的大量机会。

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本文引用的文献

1
Healthcare Experiences of Black Patients During and After Pregnancy: a Needs Assessment for Provider Training to Improve Quality of Care.
J Racial Ethn Health Disparities. 2024 Apr;11(2):992-1004. doi: 10.1007/s40615-023-01579-5. Epub 2023 Apr 3.
2
'Imposter participants' in online qualitative research, a new and increasing threat to data integrity?
Health Expect. 2023 Jun;26(3):941-944. doi: 10.1111/hex.13724. Epub 2023 Feb 16.
3
The Impact of Social Support and Pregnancy on Subjective Well-Being: A Systematic Review.
Front Psychol. 2021 Sep 9;12:710858. doi: 10.3389/fpsyg.2021.710858. eCollection 2021.
5
The Influence of Four Constructs of Social Support on Pregnancy Experiences in Group Prenatal Care.
Womens Health Rep (New Rochelle). 2021 Jun 2;2(1):154-162. doi: 10.1089/whr.2020.0113. eCollection 2021.
6
Ableism: the undiagnosed malady afflicting medicine.
CMAJ. 2019 Apr 29;191(17):E478-E479. doi: 10.1503/cmaj.180903.
7
Fibromyalgia syndrome: under-, over- and misdiagnosis.
Clin Exp Rheumatol. 2019 Jan-Feb;37 Suppl 116(1):90-97. Epub 2019 Feb 8.
8
The Effects of Fibromyalgia Syndrome on Physical Function and Psychological Status of Pregnant Females.
Arch Rheumatol. 2017 Jan 5;32(2):129-140. doi: 10.5606/ArchRheumatol.2017.6028. eCollection 2017 Jun.
9
Social Support for Female Sexual Dysfunction in Fibromyalgia.
Clin Nurs Res. 2018 Mar;27(3):296-314. doi: 10.1177/1054773816676941. Epub 2016 Nov 8.
10
The role of 'social support' in the experience of fibromyalgia - narratives from South Africa.
Health Soc Care Community. 2017 May;25(3):1021-1030. doi: 10.1111/hsc.12403. Epub 2016 Oct 26.

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