A Study to Explore the Impact of Endometriosis in the United Kingdom: A Qualitative Content Analysis

Babu Karavadra, Paul Simpson, Edward Prosser‐Snelling, Edward Mullins, Andrea Stöckl, Edward Morris
In: Gynecology and Obstetrics Research– Open Journal · 2019 · vol. 6(1) , pp. 11–19 · doi:10.17140/goroj-6-150 · W3000683430
Qualitative OA: diamond CC0 ⤵ 1 in-corpus citation
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This qualitative content analysis explored the lived experiences of women with endometriosis in the United Kingdom to identify key areas impacting their lives.

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This study utilized qualitative content analysis of an online survey to examine the impact of endometriosis on women in the United Kingdom. Data from 1,872 respondents revealed that pain, heavy menstrual bleeding, low mood, and perceived lack of understanding by others were the primary areas of concern. These factors significantly affected daily life, with participants describing the condition as an invisible disease that caused feelings of guilt regarding fertility and motherhood. The authors note a need for further research into sub-populations such as teenagers and ethnic minority women to better guide care strategies. This paper is centrally about endometriosis — specifically focusing on the psycho-social and physical impacts experienced by diagnosed women in the UK.

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Abstract

To gain insight into the areas that impact women with endometriosis.
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Keywords

Endometriosis, Impact, Qualitative methods, Quantitative methods, Online surveyAbstract

Objective

To gain insight into the areas that impact women with endometriosis. Design A qualitative content analysis of an online survey. Setting Online questionnaire via Endometriosis UK. Population Women diagnosed with endometriosis of any age range.

Methods

Free-text online questionnaire through Endometriosis UK completed by women. Results were analysed using NVivo version 9, qualitative analysis software. The software creates links between common words (codes), and these links allow data to be placed in nodes (called themes) which are then developed into categories. Content analysis was used to understand this data. Main outcome measures Impact of endometriosis on women’s lives.

Results

In total, 1872 questionnaires were returned but not everyone was able to identify ten separate features that affected them. As such, 1872 women provided at least one area that affected them, 1800 provided two areas, 1770 provided three areas and 1600 provided four areas. The results show that the main areas of concern for these women were pain (53%), heavy menstrual bleeding (11%), low mood (8%) and the perceived lack of understanding displayed by other people (7%). Other important factors were fertility concerns, impact on employment, problems with the medical team and uncertainty. These then impacted on their daily life whereby some women felt “guilty” for not ‘being a normal mother’. A key term that resonated was that endometriosis is an “invisible disease”.

Conclusion

This analysis provides us with insight into the complex psycho-social factors that interact with bio-physical symptoms. Further research is required in sub-population groups such as teenagers and ethnic minority women to explore any differences in impact and how care can be guided accordingly.

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Condition tags

endometriosis

Citation neighborhood (2-hop)

Papers in the corpus that this work cites (lower rings, blue) and that cite this one (upper rings, green). Dot size scales with the paper's in-corpus citation count — bigger dot = more influential within the endo/adeno field. Click a dot to open that paper. Outer rings show 2-hop neighbours — papers reached through the immediate citers/citees. [ collapse to 1-hop ]

References (11)

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Source provenance

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