Lost in the System: Responsibilisation and Burden for Women With Multiple Long‐Term Health Conditions During Pregnancy

Author:

Hanley Stephanie J.1ORCID,McCann Sharon2ORCID,Lee Siang Ing1ORCID,Vowles Zoe3ORCID,Plachcinski Rachel1ORCID,Nirantharakumar Krish1ORCID,Black Mairead4ORCID,Locock Louise2ORCID,Taylor Beck5ORCID

Affiliation:

1. Institute of Applied Health Research University of Birmingham Birmingham West Midlands UK

2. Health Services Research Unit University of Aberdeen Aberdeen Aberdeenshire UK

3. Department of Women and Children's Health Guy's and St. Thomas' NHS Foundation Trust London UK

4. Aberdeen Centre for Women's Health Research University of Aberdeen Aberdeen Aberdeenshire UK

5. Department of Health Sciences University of Warwick Warwick West Midlands UK

Abstract

ABSTRACTIntroductionOver a fifth of pregnant women are living with multiple long‐term health conditions, which is associated with increased risks of adverse outcomes for mothers and infants. While there are many examples of research exploring individuals' experiences and care pathways for pregnancy with a single health condition, evidence relating to multiple health conditions is limited. This study aimed to explore experiences and care of women with multiple long‐term health conditions around the time of pregnancy.MethodsSemistructured interviews were conducted between March 2022 and May 2023 with women with multiple long‐term health conditions who were at least 28 weeks pregnant or had had a baby in the last 2 years, and healthcare professionals with experience of caring for these women. Participants were recruited from across the United Kingdom. Data were analysed using thematic analysis.ResultsFifty‐seven women and 51 healthcare professionals participated. Five themes were identified. Women with long‐term health conditions and professionals recognised that it takes a team to avoid inconsistent care and communication, for example, medication management. Often, women were required to take a care navigation role to link up their healthcare providers. Women described mixed experiences regarding care for their multiple identities and the whole person. Postnatally, women and professionals recognised a downgrade in care, particularly for women's long‐term health conditions. Some professionals detailed the importance of engaging with women's knowledge, and recognising their own professional boundaries of expertise. Many participants described difficulties in providing informational continuity and subsequent impacts on care. Specifically, the setup of care systems made it difficult for everyone to access necessary information, especially when care involved multiple sites.ConclusionPregnant women with long‐term health conditions can experience a substantial burden of responsibility to maintain communication with their care team, often feeling vulnerable, patronised, and let down by a lack of acknowledgement of their expertise. These results will be used to inform the content of coproduction workshops aimed at developing a list of care recommendations for affected women. It will also inform future interventional studies aimed at improving outcomes for these women and their babies.Patient or Public ContributionOur Patient and Public Involvement group were involved in the design of the study and the analysis and interpretation of the data, and a public study investigator was part of the author group.

Funder

Medical Research Council

Publisher

Wiley

Reference39 articles.

1. Epidemiology of pre-existing multimorbidity in pregnant women in the UK in 2018: a population-based cross-sectional study

2. A Retrospective Audit of the Socio‐Demographic Characteristics and Pregnancy Outcomes for All Women With Multiple Medical Problems Giving Birth at a Tertiary Hospital in the UK in 2016;D'Arcy R.;BJOG,2019

3. Obstetric Outcomes and Delivery-Related Health Care Utilization and Costs Among Pregnant Women With Multiple Chronic Conditions

4. M.Knight K.Bunch R.Patel et al. Lessons Learned to Inform Maternity Care From the UK and Ireland Confidential Enquiries into Maternal Deaths and Morbidity 2018–2020(Oxford: National Perinatal Epidemiology Unit University of Oxford 2022).

5. M.Knight K.Bunch A.Felker et al. Saving Lives Improving Mothers' Care. Lessons Learned to Inform Maternity Care From the UK and Ireland Confidential Enquiries Into Maternal Deaths and Morbidity 2019–2021(Oxford: National Perinatal Epidemiology Unit University of Oxford 2023).

同舟云学术

1.学者识别学者识别

2.学术分析学术分析

3.人才评估人才评估

"同舟云学术"是以全球学者为主线,采集、加工和组织学术论文而形成的新型学术文献查询和分析系统,可以对全球学者进行文献检索和人才价值评估。用户可以通过关注某些学科领域的顶尖人物而持续追踪该领域的学科进展和研究前沿。经过近期的数据扩容,当前同舟云学术共收录了国内外主流学术期刊6万余种,收集的期刊论文及会议论文总量共计约1.5亿篇,并以每天添加12000余篇中外论文的速度递增。我们也可以为用户提供个性化、定制化的学者数据。欢迎来电咨询!咨询电话:010-8811{复制后删除}0370

www.globalauthorid.com

TOP

Copyright © 2019-2024 北京同舟云网络信息技术有限公司
京公网安备11010802033243号  京ICP备18003416号-3