sj-docx-1-hpq-10.1177_13591053241250101 – Supplemental material for ‘Listen to women as if they were your most cherished person’: Australian women’s perspectives on living with the pain of endometriosis: A mixed-methods study

Introduction

Participants Measures Quantitative measures Qualitative measures Study design Analysis Qualitative data analysis Quantitative data analysis

| Ethnicity n (%) | | | Australian English | 255 (66) | | Aboriginal/Torres Strait Islander | 14 (4%) | | European | 89 (23%) | | Other (Asian, African, Middle Eastern) | 25 (7%) | | Level of education n (%) | | | Year 12 or less | 88 (23%) | | Vocational education (TAFE) | 86 (22%) | | University degree (Bachelor/Master/PhD) | 180 (47%) | | other | 29 (8%) | | Marital status n (%) | | | Single | 145 (37%) | | Married/de Facto | 217 (57%) | | Separated/Divorced | 15 (4%) | | Other | 6 (2%) | | Employment status n (%) | | | Employed full time | 184 (48%) | | Employed part time | 90 (24%) | | Unemployed, unable to work, homemaker | 33 (9%) | | Student | 43 (11%) | | Self-employed or other | 33 (8%) | | Children: 1 or more n (%) | 284 (74%) | | Moderate to extreme fatigue on least fatigued day | 111 (29%) | | Moderate to extreme fatigue on most fatigued day | 340 (89%) | | Depression symptoms | | | Mild – moderate | 124 (32%) | | Severe – extremely severe | 96 (25%) | | Anxiety symptoms | | | Mild – moderate | 107 (28%) | | Severe – extremely severe | 121 (32%) | | Stress symptoms | | | Mild – moderate | 221 (58%) | | Severe – extremely severe | 81 (21%) | | Pain severity | | | Mild | 14 (3.7%) | | Moderate | 124 (32.4%) | | Severe | 245 (64%) | | Usual endometriosis pain scores | | | Mild (1–3) | 10 (2.6%) | | Moderate (4–7) | 75 (19.6%) | | Severe (8–10) | 236 (61.7%) | Themes of living with endometriosis pain Debilitating impact You have to be cautious taking time off work or school because you dont know how bad it is going to get. There is always a worse day so if your pain is at a level you can function, you really need to try and push through so that you can take time off when you have days that are unbearable (aged 25, severe pain). Stigma and change Listen to women as if they were your most cherished person. The level of debilitation related to pain cannot be quantified. We are all suffering in our own ways, and it’s so disheartening when you or others compare ‘how bad it is’ related to someone else. Believe women when they say they have pain!… to have your integrity questioned every time you raise the issue just makes you hide it more (aged 31, mild pain). Inadequate healthcare It is deeply depressing to be dismissed and sent home by specialists who either dismiss your pain or refuse to offer surgical cure, or be pushed to try hormonal contraceptives that worsen the problem. Rather than admitting there is no solutions, some doctors try to ‘victim blame’ … (aged 41, severe pain). Self-empowerment Mixed-method analysis | Model 1 | Model 2 | ||||||||| |---|---|---|---|---|---|---|---|---|---|---| | B | SE | OR | OR 95% CI | B | SE | OR | OR 95% CI | ||| | LL | UL | LL | UL | ||||||| | Debilitating impact | |||||||||| | Age | 0.012 | 0.016 | 1.012 | 0.981 | 1.044 | 0.010 | 0.017 | 1.01 | 0.976 | 1.044 | | Employment | 0.440 | 0.260 | 1.553 | 0.933 | 2.585 | 0.557 | 0.280 | 1.746* | 1.009 | 3.021 | | Education | 0.312 | 0.211 | 1.366 | 0.903 | 2.067 | 0.391 | 0.225 | 1.479 | 0.952 | 2.298 | | PSS Family | 0.064 | 0.094 | 1.066 | 0.887 | 1.281 | ||||| | PSS Friends | 0.001 | 0.095 | 1.001 | 0.830 | 1.206 | ||||| | PSS SO | 0.028 | 0.088 | 1.028 | 0.865 | 1.223 | ||||| | Depression | −0.038 | 0.033 | 0.962 | 0.902 | 1.027 | ||||| | Anxiety | −0.052 | 0.038 | 0.950 | 0.882 | 1.023 | ||||| | Stress | 0.024 | 0.036 | 1.024 | 0.954 | 1.1 | ||||| | WQ Physical | −0.121 | 0.037 | 0.886** | 0.824 | 0.953 | ||||| | WQ Psychological | 0.090 | 0.050 | 1.095 | 0.993 | 1.207 | ||||| | WQ Social | −0.055 | 0.056 | 0.947 | 0.848 | 1.057 | ||||| | WQ Environmental | 0.012 | 0.031 | 1.012 | 0.953 | 1.076 | ||||| | Fatigue | −0.004 | 0.010 | 0.996 | 0.976 | 1.016 | ||||| | Stigma and change | |||||||||| | Age | −0.026 | 0.016 | 0.974 | 0.944 | 1.006 | −0.025 | 0.017 | 0.975 | 0.943 | 1.009 | | Employment | −0.720 | 0.276 | 0.487 | 0.283 | 0.836 | −0.864 | 0.298 | 0.421** | 0.235 | 0.756 | | Education | 0.059 | 0.216 | 1.061 | 0.695 | 1.620 | 0.003 | 0.227 | 1.003 | 0.642 | 1.566 | | PSS family | 0.240 | 0.094 | 1.271* | 1.057 | 1.529 | ||||| | PSS friends | 0.018 | 0.096 | 1.018 | 0.843 | 1.228 | ||||| | PSS SO | −0.051 | 0.091 | 0.950 | 0.795 | 1.136 | ||||| | Depression | −0.073 | 0.033 | 0.929* | 0.870 | 0.992 | ||||| | Anxiety | 0.022 | 0.038 | 1.022 | 0.948 | 1.102 | ||||| | Stress | −0.010 | 0.037 | 0.990 | 0.921 | 1.065 | ||||| | WQ physical | −0.007 | 0.037 | 0.993 | 0.923 | 1.067 | ||||| | WQ psychological | −0.071 | 0.051 | 0.932 | 0.843 | 1.029 | ||||| | WQ social | −0.059 | 0.057 | 0.942 | 0.842 | 1.055 | ||||| | WQ environmental | 0.009 | 0.031 | 1.009 | 0.949 | 1.073 | ||||| | Fatigue | 0.004 | 0.010 | 1.004 | 0.984 | 1.025 | ||||| | Inadequate healthcare | |||||||||| | Age | 0.043 | 0.019 | 1.044* | 1.007 | 1.082 | 0.034 | 0.020 | 1.035 | 0.996 | 1.076 | | Employment | −0.360 | 0.292 | 0.698 | 0.393 | 1.237 | −0.356 | 0.320 | 0.700 | 0.374 | 1.311 | | Education | 0.024 | 0.250 | 1.024 | 0.627 | 1.672 | 0.152 | 0.266 | 1.164 | 0.691 | 1.961 | | PSS family | −0.279 | 0.097 | 0.757** | 0.625 | 0.915 | ||||| | PSS friends | 0.069 | 0.110 | 1.071 | 0.863 | 1.33 | ||||| | Depression | −0.045 | 0.038 | 0.956 | 0.887 | 1.031 | ||||| | Anxiety | −0.031 | 0.045 | 0.969 | 0.888 | 1.058 | ||||| | Stress | 0.024 | 0.042 | 1.024 | 0.943 | 1.112 | ||||| | WQ physical | 0.014 | 0.042 | 1.014 | 0.933 | 1.101 | ||||| | WQ psychological | 0.052 | 0.058 | 1.054 | 0.941 | 1.18 | ||||| | WQ social | 0.066 | 0.065 | 1.069 | 0.941 | 1.213 | ||||| | WQ environmental | −0.061 | 0.036 | 0.941 | 0.877 | 1.01 | ||||| | Fatigue | 0.017 | 0.012 | 1.017 | 0.993 | 1.041 | ||||| | Self-empowerment | |||||||||| | Age | 0.011 | 0.017 | 1.011 | 0.978 | 1.045 | 0.009 | 0.018 | 1.009 | 0.974 | 1.046 | | Employment | 0.183 | 0.276 | 1.201 | 0.699 | 2.062 | 0.092 | 0.298 | 1.096 | 0.611 | 1.967 | | Education | −0.336 | 0.227 | 0.715 | 0.458 | 1.116 | −0.351 | 0.245 | 0.704 | 0.436 | 1.139 | | PSS family | −0.235 | 0.098 | 0.790* | 0.652 | 0.958 | ||||| | PSS friends | −0.133 | 0.103 | 0.876 | 0.715 | 1.072 | ||||| | PSS SO | 0.008 | 0.095 | 1.008 | 0.837 | 1.214 | ||||| | Depression | 0.045 | 0.036 | 1.046 | 0.975 | 1.123 | ||||| | Anxiety | −0.024 | 0.042 | 0.976 | 0.900 | 1.059 | ||||| | Stress | −0.037 | 0.040 | 0.964 | 0.892 | 1.042 | ||||| | WQ physical | 0.064 | 0.039 | 1.066 | 0.988 | 1.15 | ||||| | WQ psychological | 0.008 | 0.055 | 1.008 | 0.906 | 1.122 | ||||| | WQ social | 0.252 | 0.065 | 1.287** | 1.134 | 1.461 | ||||| | WQ environmental | 0.008 | 0.033 | 1.008 | 0.945 | 1.076 | ||||| | Fatigue | 0.014 | 0.011 | 1.014 | 0.993 | 1.036 |

Future research

Conclusion Acknowledgments Ethics approval Informed consent Declaration of conflicting interests Funding ORCID iDs Data availability statement

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Data availability statement Article versions Authors Metrics and citations Metrics Journals metrics This article was published in Journal of Health Psychology. View All Journal MetricsPublication usage* Total views and downloads: 3050 *Publication usage tracking started in December 2016 Altmetric See the impact this article is making through the number of times it’s been read, and the Altmetric Score. Learn more about the Altmetric Scores Publications citing this one Receive email alerts when this publication is cited Web of Science: 3 view articles Opens in new tab Crossref: 4 - Selected Parameters of the Mental State of Women with Endometriosis—A Systematic Review - The Endometriosis-Related Healthcare Experiences of Regional Australian Women: A Qualitative Systematic Review - Six to seven times less likely to be physically active: Low self-determination and basic psychological needs support in women with endometriosis—A cluster analysis - Unheard, uninformed and vulnerable: a qualitative study of women who seek endometriosis care outside of biomedicine - “Effortful” motherhood: A mixed-methods study of the impact of endometriosis on family life 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.