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IntroductionEndometriosis is the leading cause of chronic pelvic pain among women. The pain associated with endometriosis significantly impacts various aspects of patients' quality of life. A notable void in the literature is the absence of a systematic review exploring pain communication between patients with endometriosis and healthcare professionals. Hence, the aim of this qualitative systematic review was to synthesize findings on how patients with endometriosis experience communicating with healthcare professionals about pain and how healthcare professionals experience these interactions.Material and MethodsA systematic literature search was conducted related to patients with endometriosis and pain communication in CINAHL PLUS with full text and MEDLINE (via EBSCO host) on May 12, 2023, and updated January 26, 2024. Searches were supplemented by backward searching reference lists and forward searching citations of included reports in Scopus and Google Scholar. The review was guided by the four‐step meta‐synthesis methodology by Sandelowski and Barosso. Critical appraisal of included studies was conducted using Critical Appraisal Skill Program (CASP). Findings were analyzed thematically, using the approach described by Thomas and Harden. The meta‐synthesis was based on a registered protocol in PROSPERO (CRD 42023425430), and the study is reported adhering to the PRISMA 2020 checklist.ResultsOverall, 37 reports published from 2003 until 2023 contributed to the review, including 4842 participants. Through thematic analysis, we developed the following themes: “Navigating the double burden,” “Lack of mutual understanding,” and “The complexities of conveying pain.”ConclusionsThe communication of pain between patients with endometriosis and healthcare professionals is complex, encompassing patterns of disbelief, normalization, and psychological attribution. Engaging in discussions about pain presents diverse challenges stemming from insufficient communication skills and assessment tools. Further research is warranted to comprehensively explore the perspectives of both patients and healthcare professionals, aiming to devise strategies that enhance communication and patient care.
IntroductionEndometriosis is the leading cause of chronic pelvic pain among women. The pain associated with endometriosis significantly impacts various aspects of patients' quality of life. A notable void in the literature is the absence of a systematic review exploring pain communication between patients with endometriosis and healthcare professionals. Hence, the aim of this qualitative systematic review was to synthesize findings on how patients with endometriosis experience communicating with healthcare professionals about pain and how healthcare professionals experience these interactions.Material and MethodsA systematic literature search was conducted related to patients with endometriosis and pain communication in CINAHL PLUS with full text and MEDLINE (via EBSCO host) on May 12, 2023, and updated January 26, 2024. Searches were supplemented by backward searching reference lists and forward searching citations of included reports in Scopus and Google Scholar. The review was guided by the four‐step meta‐synthesis methodology by Sandelowski and Barosso. Critical appraisal of included studies was conducted using Critical Appraisal Skill Program (CASP). Findings were analyzed thematically, using the approach described by Thomas and Harden. The meta‐synthesis was based on a registered protocol in PROSPERO (CRD 42023425430), and the study is reported adhering to the PRISMA 2020 checklist.ResultsOverall, 37 reports published from 2003 until 2023 contributed to the review, including 4842 participants. Through thematic analysis, we developed the following themes: “Navigating the double burden,” “Lack of mutual understanding,” and “The complexities of conveying pain.”ConclusionsThe communication of pain between patients with endometriosis and healthcare professionals is complex, encompassing patterns of disbelief, normalization, and psychological attribution. Engaging in discussions about pain presents diverse challenges stemming from insufficient communication skills and assessment tools. Further research is warranted to comprehensively explore the perspectives of both patients and healthcare professionals, aiming to devise strategies that enhance communication and patient care.
Background Endometriosis is a chronic, benign, and oestrogen-dependent condition and about 10–15% of all women of reproductive age are affected by endometriosis worldwide. It is not curable and pain is one of the most common symptoms of endometriosis and leads to low quality of life in affected women. To our knowledge, in German-speaking countries, no studies with qualitative methods approaches are available concerning women who suffer from pain caused by endometriosis and possible associated coping strategies. Our study aims to familiarise ourselves with the individual pain experience of selected women who suffer from endometriosis in Austria and their coping strategies. Methods A qualitative study design was based on problem-centred interviews for data collection and qualitative content analysis for data analysis. The research participants were women aged between 18 and 55 diagnosed with endometriosis and living in Austria. The interview period was from 27 February to 26 March 2019 and interviews lasted between 50 and 75 min. Results Eight categories were formulated, of which category 3 (thoughts and feelings regarding endometriosis and pain - ‘why?’), category 5 (effects and changes caused by endometriosis and pain – ‘quality of life’), category 7 (taboos – ‘don`t talk about it’), and category 8 (talking about it – ‘contact with others in the same position’) were relevant for this article. The remaining four categories [1–4] have already been published elsewhere. Conclusion Our data show that the social environment plays a fundamental role in coping strategies concerning pain caused by endometriosis. Women in our study reported that exchange with peers offers support. This opens a door for information events, patient organizations like support groups, and the inclusion of these in the supporting system. Involving occupational medicine and workplace health promotion departments in companies should be further goals to support affected women.
Background Endometriosis is a widespread problem in women of reproductive age, causing cyclical and non-cyclical pain in the pelvis and elsewhere, and associated with fatigue, fertility problems, and other symptoms. As a chronic pain problem, psychological variables are important in adjustment and quality of life, but have not been systematically studied. Methods A systematic search of multiple databases was conducted to obtain surveys and qualitative studies of women’s experience of pain from endometriosis. Surveys were combined narratively; qualitative studies were combined by thematic synthesis, and the latter rated for methodological quality. Results Over 2000 records were screened on title and abstract, and provided 22 surveys and 33 qualitative studies from which accounts could be extracted of the psychological components of pain in endometriosis. Surveys mostly addressed quality of life in endometriosis, with poorer quality of life associated with higher levels of pain and of distress, but few referred to coherent psychological models. Qualitative studies focused rather on women’s experience of living with endometriosis, including trajectories of diagnosis and treatment, with a few addressing meaning and identity. Thematic synthesis provided 10 themes, under the groupings of internal experience of endometriosis (impact on body, emotions, and life); interface with the external world (through self-regulation and social regulation); effects on interpersonal and social life, and encounters with medical care. Conclusions The psychological components of pain from endometriosis only partly corresponded with standard psychological models of pain, derived from musculoskeletal pain studies, with fewer fears about physical integrity and more about difficulties of managing pain and other symptoms in social settings, including work. Better understanding of the particular psychological threats of endometriosis, and integration of this understanding into medical care with opportunities for psychologically-based pain management, would substantially improve the experience and quality of life of women with painful endometriosis.
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