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      Women’s experiences of receiving care for pelvic organ prolapse: a qualitative study

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          Abstract

          Background

          Pelvic organ prolapse is a common urogenital condition affecting 41–50% of women over the age of 40. To achieve early diagnosis and appropriate treatment, it is important that care is sensitive to and meets women’s needs, throughout their patient journey. This study explored women’s experiences of seeking diagnosis and treatment for prolapse and their needs and priorities for improving person-centred care.

          Methods

          Twenty-two women receiving prolapse care through urogynaecology services across three purposefully selected NHS UK sites took part in three focus groups and four telephone interviews. A topic guide facilitated discussions about women’s experiences of prolapse, diagnosis, treatment, follow-up, interactions with healthcare professionals, overall service delivery, and ideals for future services to meet their needs. Data were analysed thematically.

          Results

          Three themes emerged relating to women’s experiences of a) Evaluating what is normal b) Hobson’s choice of treatment decisions, and c) The trial and error of treatment and technique. Women often delayed seeking help for their symptoms due to lack of awareness, embarrassment and stigma. When presented to GPs, their symptoms were often dismissed and unaddressed until they became more severe. Women reported receiving little or no choice in treatment decisions. Choices were often influenced by health professionals’ preferences which were subtly reflected through the framing of the offer. Women’s embodied knowledge of their condition and treatment was largely unheeded, resulting in decisions that were inconsistent with women’s preferences and needs. Physiotherapy based interventions were reported as helping women regain control over their symptoms and life. A need for greater awareness of prolapse and physiotherapy interventions among women, GPs and consultants was identified alongside greater focus on prevention, early diagnosis and regular follow-up. Greater choice and involvement in treatment decision making was desired.

          Conclusions

          As prolapse treatment options expand to include more conservative choices, greater awareness and education is needed among women and professionals about these as a first line treatment and preventive measure, alongside a multi-professional team approach to treatment decision making. Women presenting with prolapse symptoms need to be listened to by the health care team, offered better information about treatment choices, and supported to make a decision that is right for them.

          Electronic supplementary material

          The online version of this article (10.1186/s12905-019-0741-2) contains supplementary material, which is available to authorized users.

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          Most cited references 18

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          An International Urogynecological Association (IUGA) / International Continence Society (ICS) joint report on the terminology for female pelvic organ prolapse (POP).

          The terminology for female pelvic floor prolapse (POP) should be defined and organized in a clinically-based consensus Report.
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            Women’s experiences and health care-seeking practices in relation to uterine prolapse in a hill district of Nepal

            Background Although uterine prolapse (UP) occurs commonly in Nepal, little is known about the physical health and care-seeking practices of women with UP. This study aimed to explore women’s experiences of UP and its effect on daily life, its perceived causes, and health care-seeking practices. Methods Using a convenience sampling method, we conducted 115 semi-structured and 16 in-depth interviews with UP-affected women during September–December 2012. All interviews occurred in outreach clinics in villages of the Dhading district. Results Study participants were 23–82 years of age. Twenty-four percent were literate, 47.2% had experienced a teenage pregnancy, and 29% had autonomy to make healthcare decisions. Most participants (>85%) described the major physical discomforts of UP as difficulty with walking, standing, working, sitting, and lifting. They also reported urinary incontinence (68%) bowel symptoms (42%), and difficulty with sexual activity (73.9%). Due to inability to perform household chores or fulfill their husband’s sexual desires, participants endured humiliation, harassment, and torture by their husbands and other family members, causing severe emotional stress. Following disclosure of UP, 24% of spouses remarried and 6% separated from the marital relationship. Women perceived the causes of UP as unsafe childbirth, heavy work during the postpartum period, and gender discrimination. Prior to visiting these camps some women (42%) hid UP for more than 10 years. Almost half (48%) of participants sought no health care; 42% ingested a herb and ate nutritious food. Perceived barriers to accessing health care included shame (48%) and feeling that care was unnecessary (12.5%). Multiple responses (29%) included shame, inability to share, male service provider, fear of stigma and discrimination, and perceiving UP as normal for childbearing women. Conclusions UP adversely affects women’s daily life and negatively influences their physical, mental, and social well-being. The results of our study are useful to generate information on UP symptoms and female health care seeking practices. Our findings can be helpful for effective development of UP awareness programs to increase service utilization at early stages of UP and thereby might contribute to both primary and secondary prevention of UP.
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              Embodied knowledge in chronic illness and injury.

               Mary Wilde (2003)
              When people experience chronic illness or serious injury, changes occur not just within their physical bodies but also in their embodiments, that is, how they view the world through their bodies. For such patients, dualistic (mind-body) notions of the body as object and the mind as subject can devalue experiences that are necessary for healing and for managing everyday problems related to their illness or injury. Nurses need to be able to guide people with illness or injury to new levels of wellness, but may lack appropriate theoretical conceptualizations. Philosophies that underlie embodied knowledge--in particular, philosophies of Merleau-Ponty and Polanyi--were explored yielding two new ways to understand the body. The body as "silent partner" fosters an appreciation of the body's own subjectivity that can be enhanced in nursing care through sensitivity, listening, and creative coaching. Nurses can assist their patients to identify new and positive understandings of what their bodies mean to them after bodily changes. The body as "informant" holds much promise for solving some of the everyday problems that people with chronic illness or injury experience. By using phenomenological and other naturalistic methods, researchers and patients can find clues to solving such problems, clues that are known through daily living but hidden beneath conscious awareness. As a result, some of the practical know-how of the body as "informant" can be transformed into testable nursing interventions.
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                Author and article information

                Contributors
                purva.abhyankar@stir.ac.uk
                isabelle.uny@stir.ac.uk
                karen.semple@stir.ac.uk
                sarah.wane@northumbria.ac.uk
                S.Hagen@gcu.ac.uk
                j.e.wilkinson@stir.ac.uk
                karen.guerrero@ggc.scot.nhs.uk
                dgt4@leicester.ac.uk
                edward.duncan@stir.ac.uk
                eileen.calveley@stir.ac.uk
                andrew.elders@gcu.ac.uk
                Doreen.McClurg@gcu.ac.uk
                margaret.maxwell@stir.ac.uk
                Journal
                BMC Womens Health
                BMC Womens Health
                BMC Women's Health
                BioMed Central (London )
                1472-6874
                15 March 2019
                15 March 2019
                2019
                : 19
                Affiliations
                [1 ]ISNI 0000 0001 2248 4331, GRID grid.11918.30, University of Stirling, ; Stirling, UK
                [2 ]ISNI 0000 0001 2248 4331, GRID grid.11918.30, Nursing Midwifery and Allied Health Professions Research Unit, , University of Stirling, ; Stirling, UK
                [3 ]ISNI 0000 0001 0669 8188, GRID grid.5214.2, Nursing Midwifery and Allied Health Professions Research Unit, , Glasgow Caledonian University, ; Glasgow, UK
                [4 ]ISNI 0000 0001 0523 9342, GRID grid.413301.4, NHS Greater Glasgow and Clyde, ; Glasgow, UK
                [5 ]ISNI 0000 0004 1936 8411, GRID grid.9918.9, University of Leicester, ; Leicester, UK
                Article
                741
                10.1186/s12905-019-0741-2
                6419797
                30876415
                © The Author(s). 2019

                Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/501100000272, National Institute for Health Research;
                Award ID: 14–04-02
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2019

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