Can storytelling of women's lived experience enhance empathy in medical students? A pilot intervention study.

PURPOSE: This pilot study aimed to investigate the acceptability and efficacy of a patient storytelling intervention (live and recorded) on empathy levels of medical students. MATERIALS AND METHODS: Medical students participated in a storytelling intervention that had three components: listening to live or recorded stories from women with abnormal uterine bleeding, reflective writing, and a debriefing session. Empathy scores of students pre- and post-intervention were measured using the Jefferson Scale of Empathy-student version (JSE-S). Students also completed a feedback survey. Descriptive and inferential statistics were used to analyse quantitative data and content analysis was used for text comments. RESULTS: Both live and recorded storytelling interventions had positive effects on student's empathy scores post intervention. Overall, students were satisfied with the intervention and reported that it improved their understanding of life experiences of women. Suggestions were made for an in-person storytelling session and interactive discussion after listening to each story. CONCLUSION: A storytelling intervention has the potential to improve medical students' empathy and understanding of lived experience of women with health conditions. This could be valuable when student-patient interactions are limited in healthcare settings, or to enable stories of small numbers of patient volunteers to reach students.

Increasing incidence of endometrial cancer in Aotearoa New Zealand: Health professionals' perspective.

BACKGROUND: The incidence of endometrial cancer is globally increasing. Aotearoa New Zealand is no exception with a 59% increase in cases over that last ten years. AIMS: We report a sub-set of themes which pertain to provider reflections of rising endometrioid-type endometrial cancer incidence in individuals with high weight. MATERIALS AND METHODS: Fifteen semi-structured interviews with healthcare professionals experienced in providing care to women with endometrial cancer were audio-recorded and transcribed. Interviews were analysed using reflexive thematic analysis. RESULTS: Two main themes emerged: (1) concerns for the future; and (2) impact on fertility and treatment options. Healthcare professionals discussed rising incidence in younger people and a need for increased awareness about the association of excess weight as a risk factor for developing the disease. The concern extended to workforce and equipment shortfalls of meeting the needs of individuals with higher weight, which subsequently influenced treatment options, health outcomes and survivorship. CONCLUSIONS: Rising incidence of endometrial cancer in individuals with high weight presents multiple chances for inequitable access and health outcomes over the care continuum for endometrial cancer. Action is required to address incidence, awareness, access to equitable and inclusive treatment, and survivorship.

Developing a transgender and non-binary inclusive obstetrics and gynaecology undergraduate medical curriculum in Aotearoa/New Zealand: Where are we at, and where do we need to be?

Internationally, undergraduate medical education is not currently enabling early career doctors to meet the needs of trans and gender diverse (TGD) people as healthcare consumers. This review outlines inclusion of TGD education in undergraduate medical education more broadly to contextualise curriculum development needs in obstetrics, gynaecology and reproductive medicine in Aotearoa/New Zealand. Limited, and lack of integrated content, teaching capability and current absence of TGD health knowledge as graduate outcomes, compounded by pedagogy (biomedical/binary framing) and more appropriate learning resources are indicators for curricula, and workforce, development.

'I was able to make a better decision about my health.' Wahine experiences of colposcopy at a marae-based health clinic: A qualitative study.

BACKGROUND: Equitable access to colposcopy services is required if we are to realise the benefit of the introduction of human papilloma virus (HPV) screening in Aotearoa New Zealand. We piloted a community colposcopy clinic, co-located at an urban marae health clinic. AIM: To describe the experiences of wahine (women) attending the marae-based colposcopy clinic. METHODS: An in-depth reflexive thematic analysis from 34 people's accounts was undertaken. RESULTS: Five themes were identified from the experiences of wahine attending the clinic. Three themes related to how having a local clinic supported access: everyone was welcoming and friendly, the environment was familiar and non-clinical and the clinic was accessible. The fourth theme related to how this contributed to agency. A fifth theme relates to wahine views about informing the ongoing provision of colposcopy services. The experiences reflected the principles and values practised at the marae health clinic. Wahine described feeling cared for as soon as they entered the clinic. As the clinic was local, and for some based at their marae, it was a known space where they knew the experience would be safe. Whanau were welcome with spaces for children to play. Being local meant there were fewer logistics to manage, all of which supported access. DISCUSSION: Prioritising wahine through the provision of culturally safe and accessible colposcopy is feasible. It has the potential to contribute to the elimination of cervical cancer in Aotearoa, New Zealand.

Transcriptomic identification of differentially expressed genes in Levonorgestrel resistant endometrial cancer cell lines.

Endometrial cancer (EC) is the most common gynecologic malignancy in the world and incidence is steadily increasing. The Levonorgestrel Intrauterine System (LNG-IUS) is an alternative conservative treatment for early-stage EC, however, Levonorgestrel (LNG) resistance occurs for 1 in 3 people. This study aimed to present potential LNG resistance mechanisms and identify differentially expressed genes (DEGs) in EC cell lines. Two LNG resistant cell lines were developed through long term culture in LNG (MFE296R and MFE319R ). Whole transcriptome sequencing was carried out on triplicate RNA samples. EdgeR v3.32.1 was used to identify differentially DEGs. Blast2go V6.0 (BioBam software) was used for functional annotation and analysis of genomic datasets. Protein interactions were investigated using the STRING database, including the identification of genes with high levels of interaction (HUB genes). Select DEGs and HUB genes were validated by quantitative real-time polymerase chain reaction (qRT-PCR) and Western blot. Fifteen DEGs were identified according to FDR < 0.05 and logFC < 2. Protein analysis identified six HUB genes with a degree of connectivity > 10. Relative mRNA expression of MAOA, MAOB, THRSP, CD80, NDP, LINC01474, DUSP2 and CXCL8 was significantly upregulated in both LNGR cell lines. Relative protein expression of GNAO1 and MAOA were significantly upregulated in both LNGR cell lines. This research identified novel markers of resistance in LNGR cell lines. We discussed potential mechanisms of LNG resistance including dedifferentiation and immunostimulation. The next step for this research is to validate these findings further in both translational and clinical settings.

Examining the potential preventability of adverse fetal/neonatal outcomes associated with severe maternal morbidity.

BACKGROUND: Severe maternal morbidity (SMM) occurs in 1-2% of pregnancies. Despite the knowledge that a SMM event can contribute to poor fetal/neonatal outcomes, little is known about the preventability of these adverse outcomes. AIMS: To examine adverse fetal/neonatal outcomes associated with SMM to determine if these outcomes were potentially preventable. MATERIALS AND METHODS: A New Zealand national retrospective cohort study examining cases of SMM with an adverse fetal/neonatal outcome. Maternity and initial neonatal care were explored by multidisciplinary panels utilising a preventability tool to assess whether the fetal/neonatal harm was potentially preventable. Adverse fetal/neonatal outcomes were defined as fetal or early neonatal death, Apgar score <7 at five minutes, admission to neonatal intensive care unit or special care baby unit and neonatal encephalopathy. RESULTS: Of 85 cases reviewed, adverse fetal/neonatal outcome was deemed potentially preventable in 55.3% of cases (n = 47/85). Preventability was related to maternal antenatal/peripartum care (in utero) in 39% (n = 33/85), to initial neonatal care (ex utero) in 36% (n = 29/80), and to both maternal and neonatal care in 20% (16/80) of cases. Main contributors to potential preventability were factors related to healthcare providers, particularly lack of recognition of high risk, delayed or failure to diagnose, and delayed or inappropriate treatment. CONCLUSIONS: Multidisciplinary panels found that over half of adverse fetal/neonatal harm associated with SMM was potentially preventable. The novel approach of examining both maternal and neonatal care identifies opportunities to improve fetal/neonatal outcomes associated with SMM at multiple points on the perinatal continuum of care.

Barriers to seeking consultation for abnormal uterine bleeding: systematic review of qualitative research.

BACKGROUND: Although Abnormal Uterine Bleeding (AUB) can have serious medical consequences and significantly impacts daily life, the overall trend is that most women do not seek care for these symptoms. The objective of this review was to synthesise factors impeding women's access care for AUB. METHODS: Systematic literature review of qualitative studies (interview and focus group) regarding the lived in experiences of women with abnormal menstrual symptoms, followed by a thematic analysis of these studies. We screened CINAHL, SCOPUS, ProQuest, OVID and Pubmed for qualitative studies. Studies were assessed using the Clinical Appraisal Skills Programme checklist and thematic synthesis was used to develop themes from the findings of the studies. RESULTS: The review yielded 12 studies that satisfied the inclusion criteria. Three themes were developed that described barriers for women seeking care for AUB: health literacy (understanding of normal periods, role of cervical Pap smears and lack of access to appropriate information), taboo/normalisation (fear and embarrassment of symptoms, prioritising others) and health care provider (lack of accessible and trusted female GPs and poor experiences with GPs). CONCLUSIONS: For 20 years women have consistently reported poor experiences in accessing care for AUB. The findings from our review indicate that drivers to impeding access are multiple; therefore any approaches to improve access will need to be multi-level - from comprising local sociocultural considerations to improved GP training.

Uncovering social structures and informational prejudices to reduce inequity in delivery and uptake of new molecular technologies.

Advances in molecular technologies have the potential to help remedy health inequities through earlier detection and prevention; if, however, their delivery and uptake (and therefore any benefits associated with such testing) are not more carefully considered, there is a very real risk that existing inequities in access and use will be further exacerbated. We argue this risk relates to the way that information and knowledge about the technology is both acquired and shared, or not, between health practitioners and their patients.A healthcare system can be viewed as a complex social network comprising individuals with different worldviews, hierarchies, professional cultures and subcultures and personal beliefs, both for those giving and receiving care. When healthcare practitioners are not perceived as knowledge equals, they would experience informational prejudices, and the result is that knowledge dissemination across and between them would be impeded. The uptake and delivery of a new technology may be inequitable as a result. Patients would also experience informational prejudice when they are viewed as not being able to understand the information that is presented to them, and information may be withheld.Informational prejudices driven by social relations and structures have thus far been underexplored in considering (in)equitable implementation and uptake of new molecular technologies. Every healthcare interaction represents an opportunity for experiencing informational prejudice, and with it the risk of being inappropriately informed for undertaking (or offering) such screening or testing. Making knowledge acquisition and information dissemination, and experiences of informational prejudice, explicit through sociologically framed investigations would extend our understandings of (in)equity, and offer ways to affect network relationships and structures that support equity in delivery and uptake.

Examining adverse fetal/neonatal outcomes associated with severe maternal morbidity.

BACKGROUND: While there is a global focus on severe maternal morbidity (SMM), less is known about the impact of SMM on fetal and neonatal outcomes. AIMS: To examine fetal/neonatal outcomes associated with SMM. MATERIALS AND METHODS: A national New Zealand (NZ) retrospective cohort study describing fetal/neonatal outcomes of all women with SMM admitted to a NZ Intensive Care Unit (ICU) or High Dependency Unit (HDU) in 2014. Adverse fetal/neonatal outcomes were defined as one or more of the following: fetal or early neonatal death, hypoxic ischaemic encephalopathy, Apgar score less than seven at five minutes, admission to Neonatal Intensive Care Unit or Special Care Baby Unit. RESULTS: There were 400 women with SMM admitted to NZ ICU/HDU units in 2014, and 395 (98.8%) had complete birth/pregnancy outcome information. Of these, 49.4% (195/395) were associated with an adverse fetal/neonatal outcome. Indigenous Maori women had a 30% higher rate of adverse fetal/neonatal outcome compared to NZ European women (63.7% and 48.9% respectively; relative risk = 1.30, 95% CI 1.04-1.64). Pre-eclampsia was associated with an adverse fetal/neonatal outcome in 67% (81/120). Perinatal-related mortality rate was 53.1 per 1000 total births compared to NZ perinatal mortality of 11.2 per 1000 total births for 2014. CONCLUSION: SMM events are associated with high rates of adverse fetal/neonatal outcomes with a higher burden of adverse events for Maori. Further research is needed to explore opportunities in maternal and neonatal care pathways to improve fetal/neonatal outcomes and address inequities.

What are women saying about noninvasive prenatal testing? An analysis of online pregnancy discussion forums.

OBJECTIVE: The aim of this study was to explore what women are saying about noninvasive prenatal testing (NIPT) in online discussion forums. METHODS: Inductive thematic analysis of content from 13 open-access discussion forums written in English from 11 popular maternity websites from four different countries (the United Kingdom, United States, New Zealand, and Australia) between 2013 to 2017 (n = 127 women). RESULTS: The forums were a space where women were provided with emotional support and advice in making their decision about NIPT as screening option. Justifications were made for paying for NIPT with terminology echoing commercial advertising "price was high … well worth the peace of mind." Paying for NIPT was referred to as a shopping exercise to find the "best deal." Women in the United States often talked about having to choose between NIPT and a scan because their insurance "won't pay for both." Commercial influence on maternity care providers' preference for different brands of NIPT was evident: "my doctor only uses [brand]. He said it's the best one on the market." CONCLUSION: Our findings highlight women's need for experiential information in prenatal screening counselling and how NIPT commercialization influences both routinized perspectives, and access, which may affect informed choice and best evidence screening practice.

Reflection on the current status of endometrial cancer in New Zealand.

Incidence of endometrial cancer is increasing rapidly in the developed world and is the most common gynaecological cancer in Australia and New Zealand. In line with obesity rates, the landscape and average age of women diagnosed with endometrial cancer are changing. There is still unmet need in early diagnosis, directed treatment, management of comorbidities and prevention strategies. This opinion piece aims to reflect on the current status of endometrial cancer in New Zealand in parallel to Australia, drawing out areas for future research and discussion.

He Tamariki Kokoti Tau-Tackling Preterm: a data-linkage methodology to explore the clinical care pathway in preterm deliveries.

BACKGROUND: Significant health inequities exist around maternal and infant health for Maori, the indigenous people of Aotearoa New Zealand - and in particular around a premature (preterm) delivery. Maori babies are more likely to be born preterm (8.1%, compared to an overall rate of 7.4%) and they are more likely to have a preterm death. An essential part of redressing these disparities is to examine the clinical care pathway and outcomes associated with preterm deliveries. This paper describes a protocol utilising national and local health collections to enable such a study. DESIGN: This is a retrospective cohort study comprising 5 years data pertaining to preterm deliveries from 2010 to 2014. These data are generated from linked national administrative and local health information collections to explore a range of neonatal outcomes and infant mortality in relation to the antenatal care pathway and known risk factors for preterm delivery. This study is being conducted within a Kaupapa Maori paradigm that dismisses victim blaming and seeks to intervene at structural levels to improve the health and wellbeing of Maori whanau (family). SIGNIFICANCE OF THE STUDY: Our data-linkage methodology optimises the utility of New Zealand health collections to address a significant health issue. Our findings will fill the information gaps around the burden of preterm delivery by quantifying the incidence of preterm delivery and adverse neonatal and infant outcomes in Aotearoa New Zealand. It will explore access to evidenced based care including use of steroids before birth, and appropriate place of delivery. The results from this study will inform maternity care services to improve management of preterm deliveries - both locally and internationally. This in turn will improve the preterm sequela by reducing the long-term health burden and health inequities.

Implementing non-invasive prenatal testing into publicly funded antenatal screening services for Down syndrome and other conditions in Aotearoa New Zealand.

BACKGROUND: Non-invasive prenatal testing (NIPT) is a relatively new screen for congenital conditions - specifically, common fetal aneuploidies including Down Syndrome. The test is based on isolating freely circulating fragments of fetal-placental DNA that is present in the mother's blood. NIPT has a superior clinical performance compared to current screening, and has been available privately in Aotearoa New Zealand for the last 4 years. MAIN ISSUE: The proposed implementation of NIPT as a publicly funded service may widen the inequity in access to optional antenatal screening that already exists in this country. CONCLUSION: This paper discusses precautions that can be taken at the health system, organisation, and personnel levels to ensure that access to NIPT is equitable, that services are culturally responsive, and women's informed choice is promoted and protected. The adoption of NIPT into publicly funded services is an example of how genetic screening is becoming mainstreamed into health services; as such our approach may also have relevance around the introduction of other genetic and genomic screening initiatives.

Views of the obstetric profession on non-invasive prenatal testing in Aotearoa New Zealand: A national survey.

BACKGROUND: Non-invasive prenatal testing (NIPT) has been available in Aotearoa New Zealand (NZ) for approximately four years. It is likely to be introduced into the publicly funded prenatal screening service. AIM: To explore obstetrician use and views of NIPT, with consideration to its implementation into screening services for Down syndrome and other conditions. METHODS: An anonymous online survey combining Likert scales and free text was designed to assess current practice, knowledge, ethical considerations, counselling and views toward public funding of NIPT. The survey was distributed through the New Zealand members of the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (n = 418) and responses collected over a two-month period in 2016. RESULTS: There were 134/418 (32.1%) respondents. Current knowledge influenced decisions to offer NIPT (70.3%, 85/121). Confidence in offering NIPT was: 'not at all' (0.8%, 1/128); 'a little' (7.03%, 9/128), 'somewhat' (16.4%, 21/128), 'quite' (40.6%, 52/128) and 'very' (35.2%, 45/128). A total of 83.5% (101/121) stated NIPT should be publicly funded and NIPT capability developed within NZ (89.1%, 106/119). More information and support on the provision of NIPT was called for. CONCLUSION: There was strong support for public funding of NIPT, and for NIPT capability to be developed in NZ. The call for more training, education and support needs to be actioned in order to facilitate the introduction of NIPT into screening services.

Access to Secondary Mental Health Services in a Cohort of New Zealand Mothers.

To explore access to secondary mental health services for New Zealand women during pregnancy and for up to 1 year post-delivery. A retrospective cohort analysis of public hospital maternity data linked to mental health collections. 27 in 1000 pregnancies were associated with access to secondary mental health services (736/27,153). Independent of ethnicity, young age (<20 years) was associated with access (RR1.84; 95 %CI 1.42-2.38; P < .0001). Smoking (1.48; 1.24-1.78; P < .0001), alcohol (1.3; 0.97-1.71; P < .0001) and substance use (3.57; 2.61-4.88; P < .0001) during pregnancy were independent risk factors associated with access. Antenatal period provides an opportunity for navigating to services to ensure timely access to secondary mental health services.

Uterine cancer: exploring access to services in the public health system.

BACKGROUND: Maori are the indigenous peoples of New Zealand and experience higher rates of uterine cancer and poorer survival rates. Postmenopausal bleeding (PMB) is the most common presenting symptom for uterine cancer. Prompt investigation is essential with 28 days being viewed as an appropriate time from first medical contact (FMC) to first specialist appointment (FSA). AIMS: To compare access to services for the investigation of PMB between Maori and non-Maori women. MATERIALS AND METHODS: The time interval between FMC to FSA was obtained from medical records for women presenting to gynaecology clinics for PMB. Dates of first bleeding symptoms, knowledge and access issues were collected in a nurse-administered questionnaire. RESULTS: A total of 154 women (n = 27 Maori and 127 non-Maori) participated in the study. 23% of women had their FSA from FMC within 28 days and 67% waited more than six weeks. The 75th percentile was approximately two weeks longer for Maori women. 25% (n = 37) of women were not aware that they needed to see a doctor about PMB, and this was significantly more common for Maori women (44%; 95% CI 25-65) than non-Maori women (20%; 95% CI 13-28; P = 0.011). CONCLUSIONS: The majority of women were not seen for FSA within 28 days of their FMC. Maori women were more likely to experience lengthy delays and to report that they did not know they should see a doctor about PMB. Further investigation into reasons for delays and initiatives to improve access to services and health information appears warranted.

"I'm not getting paid to give you a TED talk on how my trans body works". Experiences of hysterectomy gender affirming surgery: A qualitative study.

OBJECTIVE: To explore the experiences of care surrounding hysterectomy as part of gender affirming surgery. METHODS: An in-depth reflexive thematic analysis from accounts by 10 out of 12 people was undertaken. Experiences were then mapped to the surgery journey as a template for developing system responsiveness. RESULTS: No one person's experience of the procedure was affirmed across the entire surgery journey. Transgender health literacy was central to inclusive practice as it mediated bodily autonomy being upheld. The physical care environment influenced the experience, for example, the waiting room was marginalizing (intimidating), with a gendered clinic name and toilets. Some participants took a female support person/partner so that "people looking would assume that I was there supporting her, not the other way around." Communication misalignments were evident around information provided/understood about fertility and ovarian preservation. Participants were also placed in the position of both receiving care and providing education: "I also shouldn't have to be going in there for treatment, and then being expected to educate the medical professional that's meant to be helping me… I'm not getting paid to give you a TED talk on how my trans body works." The experiences mapped across the surgery journey highlighted multiple levels of service provision development needed to foster inclusive practice, for example, from workforce education to healthcare policy. CONCLUSION: Healthcare for transgender people can be unsafe and inequitable. Increasing transgender health responsiveness across the surgery journey will facilitate better alignments in communication and uphold bodily autonomy, leading to safer and inclusive practice.

Wahine hauora: linking local hospital and national health information datasets to explore maternal risk factors and obstetric outcomes of New Zealand Maori and non-Maori women in relation to infant respiratory admissions and timely immunisations.

BACKGROUND: Significant health inequities exist around maternal and infant health for Maori, the indigenous people of New Zealand. The infants of Maori are more likely to die in their first year of life and also have higher rates of hospital admission for respiratory illnesses, with the greatest burden of morbidity being due to bronchiolitis in those under one year of age. Timely immunisations can prevent some respiratory related hospitalisations, although for Maori, the proportion of infants with age appropriate immunisations are lower than for non-Maori. This paper describes the protocol for a retrospective cohort study that linked local hospital and national health information datasets to explore maternal risk factors and obstetric outcomes in relation to respiratory admissions and timely immunisations for infants of Maori and non-Maori women. METHODS/DESIGN: The study population included pregnant women who gave birth in hospital in one region of New Zealand between 1995 and 2009. Routinely collected local hospital data were linked via a unique identifier (National Health Index number) to national health information databases to assess rates of post-natal admissions and access to health services for Maori and non-Maori mothers and infants. The two primary outcomes for the study are: 1. The rates of respiratory hospitalisations of infants (≤ 1 yr of age) calculated for infants of both Maori and non-Maori women (for mothers under 20 years of age, and overall) accounting for relationship to parity, maternal age, socioeconomic deprivation index, maternal smoking status. 2. The proportion of infants with age appropriate immunisations at six and 12 months, calculated for both infants born to Maori women and infants born to non-Maori women, accounting for relationship to parity, maternal age, socioeconomic deprivation index, smoking status, and other risk factors. DISCUSSION: Analysis of a wide range of routinely collected health information in which maternal and infant data are linked will allow us to directly explore the relationship between key maternal factors and infant health, and provide a greater understanding of the causes of health inequalities that exist between the infants of Maori and non-Maori mothers.

Reflections on access to care for heavy menstrual bleeding: Past, present, and in times of the COVID-19 pandemic.

The symptom of heavy menstrual bleeding (HMB) affects at least a quarter of reproductive-age menstruators. However, given the variance in diagnosing the underlying causes, barriers, and inequity in access to care for HMB, and therefore reporting of HMB, this figure is likely to be a gross underestimate. HMB can have a detrimental impact on quality of life. From the limited reports available it is estimated that around 50%-80% of people with HMB do not seek care for this debilitating symptom, and for those that do, it may take years until the first treatment action. Almost half of those with HMB believe their condition is unworthy of treatment, that there is no treatment available, or that it is "normal". The term "medical gaslighting" has recently been used to describe how healthcare professionals disregard people's symptoms. This has the ensuing effect of negatively compounding self-doubt and embarrassment around menstrual bleeding, creating a cycle of diminished experience inhibiting further seeking of care. There is a scarcity of intervention studies informing increased access to care. Multilevel approaches are needed to increase access to care and support for those with HMB. During the COVID-19 global pandemic, barriers to care access and support for HMB have been exacerbated and, given the significant pressures that this pandemic has placed on healthcare services worldwide, it will take many years to recover. In the meantime, it is crucial to ensure that medically "benign" conditions such as the symptom of HMB are not overlooked.