Compassionate Care: Exploring the Experience of Endometriosis Patients During Diagnosis. A Study of Compassion and its Implication in the New Zealand Healthcare System.

Endometriosis is a common and often underestimated medical condition. Its \nprevalence and the distress characterising the condition are widespread, yet frequently \noverlooked or misdiagnosed. Although the research literature regarding the condition is \ngrowing, studies remain centred on broadly characterising the “lived experience” of \nendometriosis, rather than specifically focusing on the experience women have with \nhealthcare, the compassion they experienced (or did not experience) during the time they \nwere seeking a diagnosis (and to follow), or the implications such experiences may have for \nlater engagement. \nIn this study, 229 women reporting a NZ-based diagnosis of endometriosis were \nrecruited online through social media and other endometriosis related platforms. Participants \ncompleted a series of questionnaires including demographic and clinical questions, general \nhealth and wellbeing information including questions regarding their endometriosis diagnosis \nand their experiences (including compassion) during the time they sought their diagnosis, and \nstandardised measures of provider and healthcare system trust. \nAs anticipated, over three quarters (80%) of participants reported a lack of feeling \ncared for during the pre-diagnosis period; a sentiment corroborated by low scores on the \ncontinuous measure of physician compassion. After a diagnosis was made, there was a \nnoticeable increase in the experience of compassion. Exploratory analyses identified several \nfactors predicting compassion ratings at different stages of the diagnostic journey. Prediagnosis compassion was associated with lower diagnostic delay, better perceived general \nhealth, and a lower total symptom burden. Post-diagnosis, more secure attachment, better \nperceived general health, a diagnosis through private healthcare, and fewer symptoms were \nassociated with greater compassion ratings. Finally, compassion ratings both pre- and post-diagnosis were linked to patients' ratings regarding current trust in healthcare providers and \nthe healthcare system. Greater felt compassion was associated with lower system distrust and \ngreater trust in physicians. \nOverall, this thesis has addressed a significant gap in the existing literature concerning \nthe experience of compassion in healthcare encounters, notably within the context of \nendometriosis diagnosis in Aotearoa New Zealand. Patients’ reports indicate that the \nexperience of compassion as lacking is common, particularly before diagnosis, and that \nexperiences of compassion not only influence patients' trust in their primary physicians but \nalso impact their perceptions of the healthcare system as a whole.