The experiences of women with endometriosis in the workplace: A qualitative metasynthesis

Introduction

Search strategy Inclusion and exclusion criteria Screening

Characteristics of the included studies | Study | Country | Study aims | Participants | Method | Data analysis | Themes | |---|---|---|---|---|---|---| | Hearn et al.17 | UK | To understand barriers and facilitators to effective communication and help-seeking amongst people with or seeking a diagnosis of endometriosis. | (N = 37) Age range: 20–48 Diagnosis: confirmed but procedure not specified (n = 25), seeking diagnosis (n = 12) Employment: not disclosed | Semi-structured interviews (N = 4) and an online survey with open-ended questions (N = 33) | Inductive thematic analysis | 1. Reflective motivation 2. Social and physical opportunity physical 3. Psychological capability. | | Peterson et al.18 | Australia | To understand the experience of loss in Australian women with endometriosis. | (N = 532) Age range: 18–50 Diagnosis: laparoscopic procedure (n = 455), pelvic exam (n = 35), ultrasound (n = 26) Employment: full or part-time (n = 382) | Online survey with open-ended questions | Thematic analysis | 1. The loss of liberty: ‘I’m trapped in the house’ 2. The loss of bodily autonomy: ‘I can barely move/breathe/talk’ 3. Loss of connection: ‘it stops me from being social’. | | Lightbourne et al.19 | Ireland | To explore the perceptions and experiences of women with endometriosis regarding the diagnosis, support and treatment options available in Ireland. | (N = 20) Age range: 18-late 50s Diagnosis: self-reported laparoscopic diagnosis Employment: not disclosed | Online semi- structured interviews | Reflexive thematic analysis | 1. Dismissive attitudes normalising severe pain 2. Inadequate health services 3. The impact of delayed diagnosis 4. Lack of education and awareness 5. Navigating ignorance, taboo and societal views. | | Gstoettner et al.20 | Austria | To explore the experiences of women with endometriosis, particularly focusing on their pain management and the impact of the condition on their lives. | (N = 10) Age range: 22–51 Diagnosis: confirmed, but procedure not specified Employment: public and private sectors (n = 7), student with part time job (n = 3) | Problem-centred interviews | Qualitative content analysis | 1. Thoughts and feelings regarding endometriosis and pain 2. Effects and changes caused by endometriosis and pain-‘quality of life’ 3. Taboos-‘don’t talk about it’ 4. Talking about it-‘contact with others in the same position’. | | Gremillet et al.21 | France | To explore and describe the specificities of the occupational life of infertile endometriotic women treated with in vitro fertilisation. | (N = 12) Age range: 18–43 Diagnosis: confirmed but procedure not specified Employment: public and private sectors (n = 11) unemployed (n = 1) | Semi-structured interviews | Grounded theory method | 1. Barriers to reconciling illness and work life 2. Facilitating factors for wellbeing at work 3. Consequences and outlooks. | | Veyrie et al.22 | France | To investigate the feelings and experiences of infertile women with deep infiltrating endometriosis during and after a first pregnancy achieved by in-vitro fertilisation. | (N = 15) Age range: 18–43 Diagnosis: MRI or laparoscopic procedure Employment: not disclosed | Semi-structured interviews | Thematic analysis | 1. Endometriosis and IVF management 2. Disappearance of symptoms during pregnancy and immediately after pregnancy 3. Recurrence of symptoms. | | Sibande and Roomaney23 | South Africa | To describe fatigue-management strategies used by women diagnosed with endometriosis. | (N = 25) Age range: 22 to 45 Diagnosis: laparoscopic procedure Employment: full time (n = 18), part time (n + 1), student (n = 1) | Semi-structured interviews | Thematic analysis | 1. The personalised nature of fatigue-management strategies 2. Cognitive strategies 3. Physical strategies 4. Maintenance of fatigue-management strategies. | | Mastrangelo and Turnbull24 | Australia | To extend understandings of the impact of surgically diagnosed endometriosis on women’s social lives, work and education. | (N = 200) Age range: 18+ Diagnosis: self-reported laparoscopic diagnosis Employment: full time (n = 74), part time (n = 40), casual (n = 51), unemployed (n = 27), on leave (n = 4), other (n = 4) | Online survey with open-ended questions | Classical inductive content analysis. | Themes around the overall impact of endometriosis, impact on social interactions with family and friends and impact on social events, leisure, work and/or education. | | Krsmanovic and Dean25 | United States | To understand the ways in which women disclose endometriosis in the workplace and thus offer suggestions to create an environment in which endometriosis patients feel willing to disclose their diagnoses and exigencies. | (N = 119) Age range: 20–59 Diagnosis: self-reported Employment: varied public and private sector (n = 95), part time or unemployed (n = 24) | Online survey with open-ended questions | Thematic analysis | 1. Frequency of communication 2. Level of openness 3. Type of content shared 4. Preferred setting for conversations 5. Preferred conversational partner. | | Huang et al.26 | China | To analyse the barriers to self-management faced by patients with adenomyosis upon diagnosis, in order to develop targeted nursing interventions that can improve their quality of life. | (N = 18) Age range: 27–50 Diagnosis: ultrasound or MRI Employment: varying public and private sectors | Semi-structured interviews | Descriptive phenomenology | 1. Lack of disease knowledge 2. Challenges and dilemmas of daily life 3. Multidimensional negative emotions 4. Personalised supporting requirements. | | Chan Sun et al.27 | Mauritius | To explore the experiences of women with endometriosis and to describe the meaning of living with endometriosis. | (N = 12) Age range: 26–44 Diagnosis: confirmed, but procedure not specified Employment: all employed, profession not disclosed | Semi-structured interviews | Thematic analysis | 1. Making sense of the condition 2. Embracing the uncertainties of life 3. Experimenting with prescribed medications 4. Learning to live with endometriosis. | | Yoon et al.28 | South Korea | To clarify the coping strategies used by women with endometriosis and how these strategies help them to adapt to uncertainty. | (N = 14) Age range: 27–54 Diagnosis: laparoscopic or open surgery Employment: not disclosed | Semi-structured interviews | Thematic analysis | 1. Gaining self-control over the ambiguous disease 2. Regaining the daily routines destroyed by the disease 3. Being emotionally supported and expressing oneself when unsupported by society 4. Taking an active role in one’s treatment plan by being self-directed. | | Cole et al.29 | UK | To examine constructions of identity in endometriosis and potential barriers to identity reappraisal in a sample of women, where the impact of endometriosis on everyday life may be particularly severe. | (N = 34) Age range: 22–56 Diagnosis: self-reported Employment: not disclosed | Online survey with open-ended questions | Reflexive thematic analysis | 1. Losing one’s sense of self 2. Doubting one’s own sanity 3. The burden on friends and family 4. Concealing distress. | | Rea et al.30 | Italy | To understand the life experiences of women suffering from endometriosis. | (N = 25) Age range: 18–54 Diagnosis: confirmed, but procedure not specified Employment: not disclosed | Semi-structured interviews | Cohen’s phenomenology | 1. Delay in diagnosis 2. Worsening of one’s life 3. Disastrous intimate life 4. Uncertainty about being able to have one’s own children. | | Roomaney and Kagee31 | South Africa | To explore, understand and describe health-related quality of life among South African women diagnosed with endometriosis. | (N = 25) Age range: 25–42 Diagnosis: laparoscopic procedure Employment: full time (n = 14), part time (n = 5), unemployed (n = 5) and student (n = 1) | Semi-structured interviews | Thematic analysis | 1. Medical factors 2. Physical functioning 3. Psychological functioning 4. Sexual functioning 5. Reproductive functioning 6. Interpersonal functioning 7. Occupational functioning 8. Information and knowledge 9. Healthcare and medical treatment 10. Financial impact. | | Grogan et al.32 | UK | To understand women’s experiences of endometriosis and its impact on their lives and relationships. | (N = 34) Age range: 22–56 Diagnosis: self-reported medically confirmed Employment: not disclosed | Online survey with open-ended questions | Thematic analysis | 1. A constant struggle with pain and fatigue 2. The ‘battle’ for an accurate diagnosis 3. Self-pacing to conserve energy 4. Managing negative impacts on work 5. Avoiding painkillers to retain alertness 6. Hiding symptoms for fear of negative judgment. | | Moradi et al.33 | Australia | To explore women’s experiences of the impact of endometriosis and whether there are differences across three age groups (16–24 years, 25–34 years, and 35 years and above). | (N = 35) Age range: 17–53 Diagnosis: confirmed, but method not specified Employment: employed (n = 26), part time (n = 6), unemployed (n = 3) | Semi-structured in-depth focus groups | Thematic analysis | 1. Experiences of living with endometriosis 2. Impact of endometriosis on women’s lives. | | Gilmour et al.34 | New Zealand | To explore the impact of symptomatic endometriosis on women’s social and working lives and the strategies used to manage their disease. | (N = 18) Age range: 16–45 Diagnosis: not disclosed Employment: employed or previously employed (n = 17) Not previously employed (n = 1) | Unstructured interviews | Thematic analysis | 1. ‘A secret little world’: Disclosing symptoms 2. ‘Everything shut down’: Life interrupted 3. ‘It’s been a very hard journey, but it’s also been a doorway’: Emergent life. | | Ballard et al.35 | UK | To investigate the reasons women experience delays in the diagnosis of endometriosis and the impact this has on the women’s experience of their condition. | (N = 32) Age range: 16–47 Diagnosis: diagnosed (n = 28), awaiting diagnosis (n = 4) Employment: not disclosed | In-depth face-to-face interviews | Thematic analysis | 1. Delaying the Diagnosis at an Individual Patient Level 2. Delaying the Diagnosis at a Medical Level 3. Impact of a Diagnosis of Endometriosis. | | Jones et al.36 | UK | To explore and describe the impact of endometriosis upon quality of life. | (N = 24) Age range: 21.5–44 Diagnosis: laparoscopic procedure Employment: not disclosed | Semi-structured interviews | Grounded theory | 1. Pain 2. Physical appearance 3. Physical functioning 4. Role performance 5. Energy/vitality 6. Social functioning 7. Control and powerlessness 8. Emotional well-being 9. Intercourse 10. Employment 11. Infertility 12. Daughters and endometriosis 13. Treatment 14. Medical profession 15. Social isolation. | Assessment of quality | Study | Q1 | Q2 | Q3 | Q4 | Q5 | Q6 | Q7 | Q8 | Q9 | Q10 | Q11 | Overall appraisal | |---|---|---|---|---|---|---|---|---|---|---|---|---| | Hearn et al.17 | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y | N | Clear description throughout. No information on theoretical perspectives. | | Peterson et al.18 | Y | Y | U | Y | Y | N | Y | Y | Y | Y | Y | No rationale is given behind the methodological approach, and the researcher’s position is not addressed. | | Lightbourne et al.19 | Y | Y | U | Y | Y | Y | Y | Y | Y | Y | Y | Detailed analysis. No rationale was given behind the methodological approach. | | Hunsche et al.37 | Y | Y | Y | U | N | N | Y | N | N | N | N | Very limited illustrative quotes. | | Gstoettner et al.20 | Y | Y | Y | Y | U | N | Y | N | N | U | N | Minimal detail around analysis. No discussion around the credibility of findings. Minimal new theories drawn. | | Gremillet et al.21 | Y | Y | Y | Y | U | N | Y | Y | Y | Y | N | The researcher’s position was not addressed, no information on the theoretical perspective was provided. Moderate description of methodology and clear description of analysis. | | Veyrie et al.22 | Y | Y | U | U | Y | N | Y | Y | Y | Y | N | Recruitment process not discussed. Researcher position not addressed. | | Sibande and Roomaney23 | Y | Y | U | Y | Y | Y | Y | Y | Y | Y | N | Clear description throughout. No information on theoretical perspectives. | | Mastrangelo and Turnbull24 | Y | Y | U | Y | Y | N | Y | Y | Y | Y | N | Clear and detailed method and analysis. The researcher’s position is not addressed, and no information on theoretical perspectives. | | Krsmanovic and Dean25 | Y | Y | Y | Y | Y | N | Y | Y | Y | Y | Y | Clear description throughout. No information on theoretical perspectives. | | Huang et al.26 | Y | Y | U | Y | Y | N | Y | Y | Y | Y | Y | Clear description throughout. Researcher position not addressed. | | Chan Sun et al.27 | Y | Y | U | U | U | N | Y | Y | Y | Y | Y | Unclear information around methodology. Researcher position not addressed. | | Yoon et al.28 | Y | Y | Y | Y | Y | Y | Y | N | N | N | Y | Clear description throughout. Researcher position not addressed. No information on the theoretical perspective. | | Cole et al.29 | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y | No concerns. Clear description throughout. | | Rea et al.30 | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y | No concerns. Clear description throughout. | | Roomaney and Kagee31 | Y | Y | Y | Y | Y | N | Y | Y | Y | Y | N | Clear description throughout. The researcher’s position was not addressed, and no information on theoretical perspectives. | | Grogan et al.32 | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y | No concerns. Clear description throughout. | | Moradi et al.33 | Y | Y | Y | Y | Y | N | Y | Y | Y | Y | N | Clear description throughout. The researcher’s position is not addressed, and no information on theoretical perspectives. | | Gilmour et al.34 | Y | Y | U | Y | U | N | Y | U | Y | Y | Y | Moderate description of methods and minimal description around analysis. Researcher position not addressed. | | Ballard et al.35 | Y | Y | U | N | N | N | Y | Y | N | Y | N | The recruitment process is not clear. Sufficient illustrative quotes, but not detailed. No clear statement of findings. No information on the theoretical perspective. Researched position not discussed. | | Jones et al.36 | Y | Y | Y | U | U | Y | Y | Y | Y | Y | N | Minimal description of methods. No information on theoretical perspectives. | Data synthesis | Analytical themes | Subthemes | |---|---| | Communication dynamics in endometriosis | Barriers to effective communication | | Facilitators of open communication | | | Career adaptations and professional challenges | Professional challenges | | Adaptive strategies in the workplace | | | Psychological and emotional impact of endometriosis | Psychological impact of social and professional misunderstanding | | Emotional manifestations of physical symptoms | Thematic synthesis Communication dynamics in endometriosis Barriers to effective communication It was very difficult to talk about, especially since I only work with men. They don’t really understand and are completely disconnected from that reality.21 It’s hard to explain absence from work or a need to take breaks when these things are due to heavy bleeding and extreme pain. My managers have all been male, and all told me I was exaggerating.17 basically giving them ammunition to use against me in the future. It’s better to silently brave through it and let my strong work ethic cover my deficiencies.25 Facilitators to open communication When I asked for time off for my first surgery, I said I have a disease called endometriosis. My supervisor said her sister has it, so she already understood everything.25 I have been in the IVF program for three years now, and it is easier for me to justify my absences. [. . .] I feel more legitimate in the context of my pregnancy project than in the context of simple stomach aches. I feel like my boss and colleagues understand my situation better.21 Career adaptations and professional challenges Professional challenges [. . .] and he [boss] just asked if I couldn’t do it [laparoscopy] later, and I said No, because there’s really something going on for me, and I’m also in insane pain and I can’t stand it any longer. And then he actually fired me while I was on sick leave. 20 left my part-time job because I was not able to work due to severe symptoms and undergoing two surgeries. . . Having two surgeries within a year, it’s kind of hard to find a job if you think that that’s going to be ongoing, not many people are going to employ you to have time off.33 Adaptive strategies in the workplace by the end of the week I am in bits and have to rest the whole weekend to even feel partly prepared for the next week.32 I rarely take time off work as I refuse to let the endometriosis take over, so I put on my TENS machine or take pain killers or just cope with it.32 Psychological and Emotional Impact of Endometriosis Emotional manifestations of physical symptoms Just because, yeah, it’s stressful and you’re angry, and I guess that’s the point where it can affect your relationships with people more seriously.33 Every month (during menstruation) I feel like I’ve lost my mind. I don’t want anything, not money, not a high position. . . The pain is so intense that I wish I didn’t have to live like this, and sometimes I feel like banging my head against the wall.26 Psychological impact of social and professional misunderstandings

Limitations Clinical Relevance and Implications for Practice

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Data availability statement Authors Author contributions Metrics and citations Metrics Journals metrics This article was published in Journal of Endometriosis and Pelvic Pain Disorders. View All Journal MetricsPublication usage* Total views and downloads: 300 *Publication usage tracking started in December 2016 Publications citing this one Receive email alerts when this publication is cited Web of Science: 0 Crossref: There are no citing articles to show. Figures and tables Figures & Media Tables View Options View options PDF/EPUB View PDF/EPUBAccess options If you have access to journal content via a personal subscription, university, library, employer or society, select from the options below: loading institutional access options Alternatively, view purchase options below: Purchase 24 hour online access to view and download content. Access journal content via a DeepDyve subscription or find out more about this option.