7 research outputs found

    Indigenous peoples' experience and understanding of menstrual and gynecological health in Australia, Canada and New Zealand : a scoping review

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    There are a variety of cultural and religious beliefs and customs worldwide related to menstruation, and these often frame discussing periods and any gynecological issues as taboo. While there has been previous research on the impact of these beliefs on menstrual health literacy, this has almost entirely been confined to low- and middle-income countries, with very little information on high-income countries. This project used the Joanna Briggs Institute (JBI) scoping review methodology to systematically map the extent and range of evidence of health literacy of menstruation and gynecological disorders in Indigenous people in the colonized, higher-income countries of Australia, Canada, and New Zealand. PubMed, CINHAL, PsycInfo databases, and the grey literature were searched in March 2022. Five studies from Australia and New Zealand met the inclusion criteria. Only one of the five included studies focused exclusively on menstrual health literacy among the Indigenous population. Despite considerable research on menstrual health globally, studies focusing on understanding the menstrual health practices of the Indigenous populations of Australia, New Zealand, and Canada are severely lacking, and there is little to no information on how Indigenous beliefs of colonized people may differ from the broader society in which they live

    Endometriosis research priorities in Australia

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    In Australia, endometriosis affects one in nine women and those assigned female at birth. Although endometriosis is more common than conditions such as diabetes, research funding for endometriosis research has historically been low in comparison. The National Action Plan for Endometriosis is an Australian Government initiative designed to redress this imbalance, with a focus on research funding. Identification of research priorities, and subsequent funding allocation that is determined by consumer input is vital. An online survey focusing on Australia and New Zealand found that the highest general priorities were the treatment and management of endometriosis and its cause(s)

    Self-management strategies to consider to combat endometriosis symptoms during the COVID-19 pandemic

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    The care of patients with endometriosis has been complicated by the coronavirus disease 2019 (COVID-19) pandemic. Medical and allied healthcare appointments and surgeries are being temporarily postponed. Mandatory self-isolation has created new obstacles for individuals with endometriosis seeking pain relief and improvement in their quality of life. Anxieties may be heightened by concerns over whether endometriosis may be an underlying condition that could predispose to severe COVID-19 infection and what constitutes an appropriate indication for presentation for urgent treatment in the epidemic. Furthermore, the restrictions imposed due to COVID-19 can impose negative psychological effects, which patients with endometriosis may be more prone to already. In combination with medical therapies, or as an alternative, we encourage patients to consider self-management strategies to combat endometriosis symptoms during the COVID-19 pandemic. These self-management strategies are divided into problem-focused and emotion-focused strategies, with the former aiming to change the environment to alleviate pain, and the latter address the psychology of living with endometriosis. We put forward this guidance, which is based on evidence and expert opinion, for healthcare providers to utilize during their consultations with patients via telephone or video. Patients may also independently use this article as an educational resource. The strategies discussed are not exclusively restricted to consideration during the COVID-19 pandemic. Most have been researched before this period of time and all will continue to be a part of the biopsychological approach to endometriosis long after COVID-19 restrictions are lifted

    A supportive text message intervention for individuals living with endometriosis (EndoSMS) : randomized controlled pilot and feasibility trial

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    Introduction: As a high symptom burden chronic condition, endometriosis is associated with diminished quality of life (QoL) and psychological distress. The EndoSMS text message intervention was developed to inform and support individuals living with endometriosis. The primary aim of this study is to assess the acceptability, feasibility and preliminary efficacy of EndoSMS, to improve endometriosis-specific QoL and reduce psychological distress in a randomised controlled trial, compared with care as usual. We will additionally assess the impact of EndoSMS on self-efficacy for managing endometriosis. Methodology: A two-arm parallel pilot randomised controlled trial with waitlist control was conducted. Baseline assessments included QoL, psychological distress, self-efficacy, demographic and medical variables. Following baseline survey completion, participants were randomised to either the Intervention (EndoSMS: 3-months of text messaging) or Control condition. At 3-month follow-up, all participants completed an online survey reassessing outcomes, and Intervention participants provided quantitative and qualitative user feedback on EndoSMS. Results: Data collection commenced on 18 November 2021 and was completed on 30 March 2022. Descriptive statistics will be used to analyse feasibility and acceptability of the intervention. Preliminary efficacy analyses will be conducted using linear mixed models for QoL, psychological distress and self-efficacy outcomes. Subgroup analyses will also be conducted for typically underserved populations (e.g., rural/regional). Conclusion: This pilot will provide acceptability, feasibility and preliminary efficacy evidence for the impact of a supportive text messaging program for endometriosis. It will contribute to understanding how to optimally support individuals in living with and managing their endometriosis. Trial Registration: Australian New Zealand Clinical Trials Registry

    Co-design and development of EndoSMS, a supportive text message intervention for individuals living with endometriosis : mixed methods study

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    Background: Endometriosis, which affects 1 in 10 people assigned female at birth, is a chronic systemic inflammatory disease with a high symptom burden and adverse socioemotional impacts. There is a need for an accessible, cost-effective, and low-burden intervention to support individuals in managing their endometriosis condition. Objective: This study aimed to co-design and evaluate the acceptability, readability, and quality of a bank of supportive SMS text messages (EndoSMS) for individuals with endometriosis. Methods: In phase 1 of this mixed method design, 17 consumer representatives (individuals with endometriosis) participated across three 3-hour web-based (Zoom, Zoom Video Communications, Inc) focus groups. The transcripts were encoded and analyzed thematically. In phase 2, consumer representatives (n=14) and health care professionals (n=9) quantitatively rated the acceptability, readability, and appropriateness of the developed text messages in a web-based survey. All the participants initially completed a background survey assessing sociodemographic and medical factors. Results: Consumer representatives demonstrated diverse sociodemographic characteristics (Mage=33.29), varying in location (metropolitan vs rural or regional), employment, and relationship and educational statuses. Participants reached a consensus regarding the delivery of 4 SMS text messages per week, delivered randomly throughout the week and in one direction (ie, no reply), with customization for the time of day and use of personal names. Seven main areas of unmet need for which participants required assistance were identified, which subsequently became the topic areas for the developed SMS text messages: emotional health, social support, looking after and caring for your body, patient empowerment, interpersonal issues, general endometriosis information, and physical health. Through a web-based survey, 371 co-designed SMS text messages were highly rated by consumers and health care professionals as clear, useful, and appropriate for individuals with endometriosis. Readability indices (Flesch-Kincaid scale) indicated that the SMS text messages were accessible to individuals with a minimum of 7th grade high school education. Conclusions: On the basis of the needs and preferences of a diverse consumer representative group, we co-designed EndoSMS, a supportive SMS text message program for individuals with endometriosis. The initial evaluation of the SMS text messages by consumer representatives and health professionals suggested the high acceptability and suitability of the developed SMS text messages. Future studies should further evaluate the acceptability and effectiveness of EndoSMS in a broader population of individuals with endometriosis

    Lessons from implementing the Australian National Action Plan for Endometriosis

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    Endometriosis is a common yet under-recognised chronic disease with one in nine (more than 830,000) women and those assigned female at birth diagnosed with endometriosis by the age of 44 years in Australia. In 2018, Australia was the first country to develop a roadmap and blueprint to tackle endometriosis in a nationwide, coordinated manner. This blueprint is outlined in the National Action Plan for Endometriosis (NAPE), created from a partnership between government, endometriosis experts and advocacy groups. The NAPE aims to improve patient outcomes in the areas of awareness and education, clinical management and care and research. As researchers and clinicians are working to improve the lives of those with endometriosis, we discuss our experiences since the launch of the plan to highlight areas of consideration by other countries when developing research priorities and clinical plans. Historically, major barriers for those with endometriosis have been twofold; first, obtaining a diagnosis and secondly, effective symptom management post-diagnosis. In recent years, there have been calls to move away from the historically accepted ‘gold-standard’ surgical diagnosis and single-provider specialist care. As there are currently no reliable biomarkers for endometriosis diagnosis, specialist endometriosis scans and MRI incorporating artificial intelligence offer a novel method of visualisation and promising affordable non-invasive diagnostic tool incorporating well-established technologies. The recognised challenges of ongoing pain and symptom management, a holistic interdisciplinary care approach and access to a chronic disease management plan, could lead to improved patient outcomes while reducing healthcare costs

    [In Press] Endometriosis and the workplace : lessons from Australia's response to COVID‐19

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    Endometriosis is known to impact work productivity. The COVID-19 pandemic resulted in a shift in working practices for many, with an increase in working from home and/or flexible working hours. The aim of this online cross-sectional study was to determine if these changes resulted in changes in symptom management and productivity in Australian people with endometriosis. Three hundred and eighty-nine people responded to the survey. The majority of respondents found that their endometriosis symptoms were much easier to manage, and they were more productive. A key factor was flexibility in work hours and the increased ability to self-manage their time
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