“I just felt stuck in a loop of pain and invalidation” : a reflexive thematic analysis of women’s experiences of healthcare for endometriosis in Aotearoa New Zealand : a thesis presented in partial fulfilment of the requirements for the degree of Master of Science in Psychology (Health Psychology) at Massey University, Manawatū, New Zealand
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Date
2024
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Massey University
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Abstract
Endometriosis is a chronic condition affecting 120,000, or approximately 1 in 10, women of reproductive age in Aotearoa New Zealand. Additionally, there is a diagnostic delay, with many women experiencing symptoms for many years before gaining a diagnosis. Interactions with healthcare providers are an essential factor in promoting women’s quality of life. Consequently, it is important to investigate the healthcare encounters for endometriosis to improve health outcomes. Previous research has tended to focus on impacts of endometriosis on women’s lives, however there is a lack of research examining healthcare systems for endometriosis-related care, especially in Aotearoa New Zealand. Therefore, my research focuses on women’s experiences of the healthcare system in Aotearoa New Zealand. I conducted this research from a feminist standpoint theoretical lens to prioritise women’s embodied knowledge. I used an online qualitative survey to collect data from 63 women across Aotearoa New Zealand who have been diagnosed with endometriosis. Using reflexive thematic analysis, I formed four main themes: (1) minimisation and dismissal of women’s symptoms, (2) mixed experiences of healthcare providers, (3) lack of support from healthcare providers, and (4) what women want from endometriosis healthcare. The findings of my study suggest that women with endometriosis often experience dismissal and lack of support from healthcare providers from when they first present with pelvic pain throughout the whole diagnosis and treatment process. Accordingly, there are current unmet needs in the healthcare system for women with endometriosis and I argue that patient-centred care is required to address those needs.