“A protracted struggle” – A qualitative blog study of endometriosis healthcare experiences in Sweden

Hanna Grundström, Hanna Danell, Emma Sköld, Siw Alehagen
In: Australian Journal of Advanced Nursing · 2020 · vol. 37(4) · doi:10.37464/2020.374.75 · W3089759891
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⚙ AI-generated summary by claude@2026-06, 2026-06-07 ⓘ

This qualitative study of Swedish endometriosis patient blogs found that healthcare experiences were a protracted struggle involving numerous professionals, where adequate competence and person-centered responses significantly impacted well-being.

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⚙ AI-generated deep summary by claude@2026-06, 2026-06-07 · read from full text ⓘ

This inductive qualitative study analyzed Swedish, publicly accessible blog posts from 16 endometriosis-diagnosed individuals aged 22–34 (blogs written between 2008 and 2019) to characterize their healthcare experiences. Using thematic analysis, the authors found a main theme of “A protracted struggle,” with subthemes that highlighted how the response from healthcare professionals influenced both physical and mental health, and how perceived competence was valuable, alongside person-centredness and continuity amid contact with many different professionals across Sweden. The authors explicitly note potential limitations that blog narratives may differ from interview accounts because of the diary-like nature of blogs and the presence/absence of researcher influence, and they observed that earlier studies often describe normalization, trivialisation, and lack of knowledge, which their data likewise reflected. This paper is centrally about endometriosis — it specifically uses endometriosis blog posts to examine how healthcare encounters are experienced.

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Abstract

Objective: The aim of this study was to identify and describe endometriosis healthcare experiences based on affected individuals’ blog posts. Background: Endometriosis is a chronic gynaecological disease that often has a negative effect on mental, physical, sexual and social health, resulting in lower quality of life. Endometriosis healthcare experiences have typically been described in terms of normalisation, trivialisation and a lack of knowledge from healthcare professionals. These experiences are often reported via individual interviews or focus group interviews. Studying internet blogs may contribute additional information that might not be disclosed during interviews. Therefore, observing and analysing content from blog posts may present an opportunity to gain additional understanding of how healthcare encounters can be experienced by individuals with endometriosis. Study design and methods: This is an inductive qualitative study based on blog posts. The blog posts were written in Swedish and posted online without passwords. Sixteen blogs written between 2008 and 2019 by people aged 22-34 were included. The bloggers had been diagnosed with endometriosis one to seven years prior to writing the blogs and lived all over Sweden. Data collection was performed in March 2019 using an online search engine. A combination of different research terms was used to find the blogs. After considering the blogs on the basis of inclusion and exclusion criteria, 12 blogs remained, and another four blogs were included via links from one of the blogs. The analysis was conducted using thematic analysis according to Braun and Clarke. Results: The results are presented under one main theme, “A protracted struggle”, and two subthemes, “The response plays a significant role” and “The value of competence”. The bloggers described their healthcare experiences as a long struggle including contact with a large number of different healthcare professionals (HCPs), where the response was significant for their physical and mental health. They emphasised the advantages of person-centredness, competence and continuity in the HCP contact. Conclusions and implications for practice: The results demonstrate that the journey through healthcare was experienced as a prolonged struggle, including normalisation, trivialisation and distrust. The results imply that more improvement work remains to be done within endometriosis healthcare. Taking patients’ complaints seriously and providing prompt and effective investigations and treatment may lead to more positive healthcare experiences. What is already known about the topic? Endometriosis healthcare experiences have typically been described in terms of normalisation, trivialisation and a lack of knowledge from healthcare professionals. Previous qualitative studies on the subject are interview studies, which may be influenced by the presence of researchers. What this paper adds: The care-seeking behaviours involved a wide range of strategies. The descriptions varied from extensive care-seeking from different doctors and clinics, to refraining from seeking care due to a fear of being treated badly. The wording used in the blogs was tougher and more unforgiving, and included mostly negative aspects compared to what has been presented in interview studies. This may be explained by the “diary-like” characteristics of blogs and the free way of presenting narratives in a blog.
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Keywords

endometriosis, blogs, qualitative analysis, healthcare encounter, thematic analysis

Abstract

Objective: The aim of this study was to identify and describe endometriosis healthcare experiences based on affected individuals’ blog posts. Background: Endometriosis is a chronic gynaecological disease that often has a negative effect on mental, physical, sexual and social health, resulting in lower quality of life. Endometriosis healthcare experiences have typically been described in terms of normalisation, trivialisation and a lack of knowledge from healthcare professionals. These experiences are often reported via individual interviews or focus group interviews. Studying internet blogs may contribute additional information that might not be disclosed during interviews. Therefore, observing and analysing content from blog posts may present an opportunity to gain additional understanding of how healthcare encounters can be experienced by individuals with endometriosis. Study design and methods: This is an inductive qualitative study based on blog posts. The blog posts were written in Swedish and posted online without passwords. Sixteen blogs written between 2008 and 2019 by people aged 22-34 were included. The bloggers had been diagnosed with endometriosis one to seven years prior to writing the blogs and lived all over Sweden. Data collection was performed in March 2019 using an online search engine. A combination of different research terms was used to find the blogs. After considering the blogs on the basis of inclusion and exclusion criteria, 12 blogs remained, and another four blogs were included via links from one of the blogs. The analysis was conducted using thematic analysis according to Braun and Clarke. Results: The results are presented under one main theme, “A protracted struggle”, and two subthemes, “The response plays a significant role” and “The value of competence”. The bloggers described their healthcare experiences as a long struggle including contact with a large number of different healthcare professionals (HCPs), where the response was significant for their physical and mental health. They emphasised the advantages of person-centredness, competence and continuity in the HCP contact. Conclusions and implications for practice: The results demonstrate that the journey through healthcare was experienced as a prolonged struggle, including normalisation, trivialisation and distrust. The results imply that more improvement work remains to be done within endometriosis healthcare. Taking patients’ complaints seriously and providing prompt and effective investigations and treatment may lead to more positive healthcare experiences. What is already known about the topic? - Endometriosis healthcare experiences have typically been described in terms of normalisation, trivialisation and a lack of knowledge from healthcare professionals. - Previous qualitative studies on the subject are interview studies, which may be influenced by the presence of researchers. What this paper adds: - The care-seeking behaviours involved a wide range of strategies. The descriptions varied from extensive care-seeking from different doctors and clinics, to refraining from seeking care due to a fear of being treated badly. - The wording used in the blogs was tougher and more unforgiving, and included mostly negative aspects compared to what has been presented in interview studies. This may be explained by the “diary-like” characteristics of blogs and the free way of presenting narratives in a blog.

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endometriosis

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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. [ expand to 2 hops ] — adds papers reached through this work's immediate citers/citees. Heavier; up to 60 extra dots.

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