General Practice and Primary Care - Theses
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ItemLabiaplasty – Mind the Gap: How the female genital cosmetic surgery industry has exposed gaps in medical anatomy education( 2023-06)Background: In the PhD research described herein, I used the female genital cosmetic surgery (FGCS) industry to illustrate a contemporary challenge to traditional representations of female genital anatomy. The most popular of the FGCS procedures, labiaplasty, involves trimming the labia minora so that they sit level with or are completely obscured by the labia majora. The labiaplasty market is booming. The anatomical criterion behind the justification for labiaplasty is problematic, because normal labia, which show a range of size, shape and asymmetry, are being confused with idealised labia, as promulgated on social media and cosmetic surgery websites. Cosmetic surgery websites use the term hypertrophy for protruding labia to imply a pathological condition requiring surgery, even though the labia have an important role in sexual response. Critically, anatomists have been absent from public and medical discourse about the FGCS industry, despite playing a pivotal role in the education of the next generation of doctors. It has been claimed that all medical and non-medical curricula lack genital anatomy education. My research explored whether the teaching of anatomy has, can or should play a role in informing frontline practitioners about the normal variation in structure and functions of female genitalia. Methods: I employed a qualitative methodological approach to explore how female genital anatomy is represented in the scientific literature, anatomical textbooks and anatomy education, and whether that content has changed over time. Results: My literature review identified an evidence base for normal in 12 population-based studies that recorded labial dimensions and showed wide variation in labial width and length. Protruding labia and asymmetry were common. An analysis of 78 historic and contemporary anatomy texts mapped representations of female genital anatomy over time, and confirmed that the spectrum of normal appearance for the vulva was not acknowledged in English-language anatomy textbooks. A series of semi-structured interviews with Australian anatomists identified barriers and facilitators for teaching vulval anatomy. Barriers included lack of connection to contemporary clinical practice, technical difficulty and time involved in updating presentations, the crowded curriculum, and personal reticence about teaching genital anatomy. Facilitators included lived experience of vulval morphological variation and social media. Themes around inclusivity also emerged during the interviews, with reluctance to experiment with inclusive terminology identified as another barrier to teaching female genital anatomy. Conclusion: My study provided the first evidence for diverse vulval morphology, and incorporated the first published qualitative investigation of the teaching of female genital anatomy. It established that vulval anatomy in textbooks and teaching does not acknowledge morphological diversity and function, knowledge required by general practitioners when advising patients requesting labiaplasty, and for which published evidence now exists. The anatomists interviewed acknowledged the importance of teaching about anatomical variation and using inclusive language in a contemporary society that is embracing non-binary views of gender. Results from this study will inform future development of anatomy curricula and resources, and inclusivity guidelines, and enable the discipline of anatomy to enter and influence contemporary discourses about genital and gender diversity.
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ItemAssessing and addressing diabetes distress during type 2 diabetes care: Design and implementation of a digital health solution in general practice( 2023-04)Background: Type 2 diabetes (T2D) affects 1.2 million (4.5%) Australians. It is estimated that up to 36% of people with T2D experience diabetes distress, the negative emotional experience resulting from the challenges of living with the demands of diabetes. Diabetes distress impacts diabetes self management and glycaemia. Healthcare professionals can assess diabetes distress using the Problem Areas In Diabetes (PAID) scale. Given that most people with T2D attend general practice, it is important to understand and optimise general practice approaches to assessing and addressing diabetes distress. Aim: This thesis aims to explore current practices for assessing and addressing diabetes distress in Australian general practice and develop an intervention to optimise these. Methods: Following a literature review, I conducted five related studies in two phases aligned with the Knowledge to Action framework. The first phase comprises three studies: a systematic review, interviews with people with T2D, and a survey of general practitioners (GPs). The first study was a systematic review of studies using a Patient Reported Outcome Measure (PROM) to assess depressive symptoms or diabetes distress during T2D care. In study two, I explored people with T2D experiences of emotional support in general practice using qualitative interviews. In study three, an online survey of GPs, I explored the current practices for assessing diabetes distress. In phase two of the thesis, I addressed key gaps identified in phase one in a series of design sessions and a case study to design and implement a digital health solution, PROM-GP. Results: There was a paucity of studies exploring if using the PAID scale during T2D care was associated with improvements in clinical and process outcomes in general practice. People with T2D do not recall completing the PAID scale in consultations with their GP. However, they acknowledged that the GP-patient relationship supported emotional health discussions. People with T2D speculated that the PAID scale would support the discussion if this relationship were absent. Three-quarters of GPs recognise their role in diabetes distress assessment. However, only a quarter GPs routinely ask about or assess for diabetes distress, and only 1.9% use the PAID scale. Health professionals key design preference was supportive language to minimise patients’ negative emotional responses when completing the PAID scale. Implementing PROM-GP was part of an ongoing relationship, with practices inviting people with T2D whom they deemed suitable. COVID-19 impacted healthcare professionals’ capacity to engage with the implementation of PROM-GP. Conclusions: Despite most GPs recognising their role, few routinely ask about or assess diabetes distress. When general practice healthcare professionals use the PAID scale, it is with a limited subset of people with T2D with an existing relationship. This limits the PAID scale use with people without an existing relationship who want to be asked. Healthcare professionals are concerned that asking and completing the PAID scale will elicit a negative emotional, unlike people with T2D who view it as a questionnaire. Competing interests hindered sustained implementation. Future research can focus on systematically implementing the PAID scale with automation during all T2D annual reviews.
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ItemReproductive genetic carrier screening for cystic fibrosis, fragile X syndrome and spinal muscular atrophy in general practice( 2022)The Royal Australian and New Zealand College of Obstetricians and Gynaecologists and The Royal Australian College of General Practice recommend that information on reproductive genetic carrier screening (RGCS) for at least the most common inherited genetic conditions in our population, that is thalassaemia, cystic fibrosis (CF), spinal muscular atrophy (SMA), and fragile X syndrome (FXS), should be offered to all women planning pregnancy or in early pregnancy regardless of family history or ethnicity. While it is recognized that general practice is an appropriate place to undertake RGCS, little is known about when and how general practitioners are offering RGCS in Australia and what their attitude to screening is. This study, using qualitative and quantitative methods, has investigated when, where, how and why general practitioners (GPs) have participated in a 3-condition RGCS testing for FXS, CF, and SMA, and has measured carrier frequencies for these conditions in the community. GP participation was generally low, with much greater participation among obstetricians. Marked inequity of access to RGCS was identified, with very low rates of screening among socioeconomically disadvantaged women and women from rural and regional areas. GPs offering screening had a positive attitude to the role of general practice in RGCS. They were confident in their counselling skills and reported that the offer of screening was acceptable to their patients. Offering screening as part of preconception care was seen as preferable to antenatal screening. Barriers to offering screening in general practice were low levels of GP education in carrier screening, out of pocket cost of screening, regional or rural locations, and low frequency of preconception care consultations. Addressing the causes of inequity of access to screening in general practice, particularly the out-of-pocket cost of screening, and poor provision of preconception care, will allow more women and couples the opportunity to make informed choices about participation in screening.
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ItemTargeted screening and the use of mobile apps for the prevention of melanoma in primary care( 2021)Delivering personalised risk-stratified melanoma prevention advice has the potential to improve outcomes. While the Australian guidelines recommend tailored risk assessment and skin self- monitoring for people at risk of melanoma, very little support and structure to undertake this is currently offered. Significant research efforts have been spent developing risk prediction models for melanoma. However, there is a lack of research on how to translate these models into practice and utilise them to improve the detection of melanoma. Furthermore, supporting those at risk of melanoma to skin self-monitor through education and reminders can potentially improve earlier diagnosis. It has been suggested that mobile apps for skin self-monitoring can provide this education, structure, and reminders. While many consumer apps have been developed and are publicly available, there is limited reporting on patient utilisation of these. The overarching aim of this thesis was to identify people at risk of melanoma and understand the usefulness, acceptability, and uptake of mobile technology for skin self-monitoring in this at risk population to encourage early diagnosis. Specifically, it answered the following research questions: 1. Is using an existing risk assessment tool an acceptable and feasible way of identifying Australian general practice patients at increased risk of melanoma and can we estimate the prevalence of these patients? 2. What are patient’s experiences and views of using commercially available mobile apps to skin self-monitor their skin for melanoma when at risk of melanoma? 3. How effective are mobile apps for skin self-monitoring in a population at risk of melanoma? Three discrete studies were conducted to address the research questions. Study one (described in chapter two), investigated the acceptability and feasibility of identifying patients at increased risk of melanoma in Australian general practice using an existing self-completed risk assessment tool. Stratification of risk was based on the validated Williams melanoma risk prediction model. The tool was acceptable and feasible; this finding was supported by the high response rate (90.4%) and low number of patients needing assistance to complete the survey (13%). These findings support the implementation of real-time risk stratification tools for patients in primary care to allow tailored screening and prevention of melanoma. The second and third studies (described in chapters three and four) were focused on the use of mobile apps and their potential assistance with encouraging patients at increased risk of melanoma to skin self-monitor. Study two provided patients at risk of melanoma with melanoma apps and interviewed them after three months about their experiences and views of the apps. This study found that while patients understood the potential benefits of using these types of apps, there were many barriers which impacted ongoing use. Based on these findings, the last research question was changed to understand the evidence around the uptake and use of mobile apps for the prevention and early detection of skin cancer. The last study (chapter four) was a systematic review of the literature to further understand the utilisation of mobile apps for skin cancer more broadly and determine the factors that impact use and engagement. This program of research has demonstrated that patients are willing to use a self-assessed risk tool to determine their risk of melanoma in primary care. However, there remain barriers to the use and uptake of mobile apps to assist with skin self-monitoring. While these apps continue to evolve and advance, these challenges limiting longer term use remain unaddressed. These apps have the potential to be useful for patients in the future if these barriers around uptake and use were suitably addressed.
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ItemGana Burrai: Applying population data linkage to build an Aboriginal community-governed maternal and infant health dataset in the Goulburn Murray region( 2021)This doctoral research is a quantitative population data linkage study. The research links administrative and statutory data that describes the maternal and birth characteristics of Aboriginal mothers and babies on traditional Yorta Yorta country. This research blends a traditional epidemiological methodology with a discourse informed by Aboriginal cultural knowledge, data management, analysis and interpretation. An Aboriginal lens has been applied to the concept, design, analysis and interpretation of the research. Data collected through eight key datasets are linked using GRHANITE data-linkage technology to generate a comprehensive dataset that: - describes patterns and trends of maternal and infant outcomes (years 2008–17 inclusive) - applies an algorithmic measure over the linked dataset, providing an accurate ascertainment of births to mothers and/or fathers who identify as Aboriginal - uses traditional Aboriginal geospatial boundaries to ensure total Aboriginal population inclusion - establishes a framework for undertaking research based on Aboriginal leadership and data management. Distinct components of the project method acknowledge the inconsistency between Aboriginal traditional country boundaries. The process of community engagement and relationship building was critical in the progress of the Gana Burrai project. The technical component of this project has enabled the generation of a comprehensive, linked dataset that is bespoke to the women and babies belonging to and living on Yorta Yorta country.
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ItemRedefining the measurement of technology-facilitated abuse in relationships: The TAR Scale( 2021)Technology-facilitated abuse in relationships (TAR) is a growing health and social issue across the globe, yet TAR research in the Australian context is limited. Affecting people of all ages, TAR is posited as highly prevalent among young people for whom it may be particularly pervasive and pernicious. Limited scholarship on the effects of TAR suggest impacts are wide-ranging and at times serious. Young women are thought to be more negatively impacted than young men. However, robust TAR assessment tools are yet to emerge, bringing the accuracy of prevalence and gender findings into question. Further, TAR assessment tools are yet to include validated measures of impact, so existing impact findings are also vulnerable to inaccuracy. Finally, scholars assert that TAR mostly manifests as patterns of behaviour in young people’s lives, yet this potentiality has received limited research attention. To address these gaps, this PhD had two aims. First, to make a step-change in the measurement of TAR among young people by developing a robust scale that simultaneously measures TAR victimisation and impact. Second, among a sample of young Australians, to investigate the prevalence and impact of TAR and how it manifests as patterns of behaviour, across gender. Observing best-practice steps of scale development, the research used a mixed-methods approach involving consultation with young people (n = 38), topic experts (n = 33) and frontline practitioners (n = 171), followed by a large-scale youth survey (n = 527) for the application of exploratory factor analysis. Victimisation frequency and impact were also explored, including an analysis of TAR patterns. The original contributions made by this thesis include a new simple definition of TAR and a new robust assessment tool that measures TAR victimisation and impact. The new TAR Scale yields sound reliability and validity evidence and gendered TAR victimisation findings. Contributing the first validated measure of TAR impact and the only robust TAR measure developed among Australians aged 16 to 24 years, the scale enabled the first comprehensive study of TAR among this population. A further innovation of the thesis includes an analysis of multi-dimensional patterns of TAR, demonstrating the importance of moving beyond aggregate measures that focus solely on the presence or absence of single TAR dimensions. The Humiliation pattern was experienced more frequently by young men than young women, the Sexual Coercion pattern more frequently by young women than young men, and the Monitoring, Control and Threats pattern equally across gender. Some TAR behaviours had greater impact on young women, while others had greater impact on young men. Finally, the thesis contributes new knowledge regarding the potential roles of reputation and humiliation in young men’s experiences of TAR, and unique insights regarding some young men’s misconception of the severity of the impact of TAR on young women. Implications for future research include supplementary validation of the TAR Scale, further exploration of TAR impacts across gender, and additional investigation into how TAR manifests as patterns of behaviour. Furthermore, the new insights into TAR and its gendered impact hold implications for practitioners and policymakers, including the potential for enhanced support services for young people and the development of gender-nuanced TAR education and prevention programs.
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ItemMental-physical multimorbidity, motivational interviewing and the mechanisms of collaborative care: A multimethod examination( 2021)Multimorbidity, or the presence of more than one long-term condition in the one person, is a major issue in health care in Australia and internationally. Multimorbidity impacts on people’s quality of life and increases the cost of providing health care, and this is especially true for people living with mental-physical multimorbidity. Lack of integrated care is compounded by single disease guidelines not meeting the needs of many of the people living with multimorbidity or the clinicians who support them. Interventions to support people living with multimorbidity to achieve better health and well-being are needed. Expert consensus guidelines recommend that interventions are person-centred, focused on health behaviour change and can be integrated into routine care. Collaborative care, characterised by multidisciplinary involvement, development of an evidence-based management plan, patient review and monitoring and enhanced interprofessional communication offers the most promising framework for meeting the needs of people living with multimorbidity. Yet operationalising the principles of collaborative care, the ‘how’ of delivering that care, remains an area for further research. Motivational interviewing (MI) is a person-centred communication style to support behaviour change and may offer an effective approach to communication in interventions for multimorbidity thereby supporting the delivery of collaborative care for people living with mental-physical multimorbidity. The overall aim of this thesis is to examine the applicability and potential of motivational interviewing in the further development of collaborative care for people living with multimorbidity. This PhD research project is a multimethod investigation conducted in two phases. To address the aim of the thesis, the first phase of the research program investigated the existing application of MI in health care settings, by disease and clinician type, through a systematic review of systematic reviews, as well as a secondary observational analysis of the communication and MI skills used in routine primary care practice. This first phase of the thesis provides support for the potential of MI in health care settings across a range of chronic conditions, both mental and physical, and delivered by a range of clinicians. Observational analysis provided insights into the clinical skills to target in intervention development, specifically about the use of MI skills to promote engagement and to elicit individual perspectives, so as to tailor intervention and information provision. Embedded within a research group undertaking a randomised controlled trial of stepped care to address depression severity in primary care, the second phase of this thesis includes the development of an MI-informed model of collaborative care, with intervention mechanisms identified from the synthesis of theory, the available best practice clinical guidelines, and primary care nurse perspectives. The resultant model of care was then trialled in the Target-D randomised controlled trial and used in the intervention arm with those experiencing severe symptoms. The findings of a multimethod realist evaluation of this new collaborative care intervention include that MI skills contribute to engagement, individual focus and behaviour change empowerment as key mechanisms. In addition, this approach to collaborative care is supported by tailored flexibility, structured clinical practice resources, and interprofessional collaboration. The findings of this PhD can inform the further development of primary care interventions for people living with mental-physical multimorbidity.
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ItemHypertensive disorders of pregnancy (HDP) management pathways for Indonesian primary care( 2021)Background: Indonesia has a high maternal mortality rate due to hypertensive disorders of pregnancy (HDP), but limited guidelines for HDP management are available in primary care settings. Recommendations for improving HDP management in Indonesian primary care have been identified from a review of HDP international guidelines. Adopting the recommendations into practice in the form of management pathways can potentially change the providers’ practice and subsequently improve care for HDP women. Aim: To improve HDP management in Indonesia by developing a set of HDP management pathways for primary care and determining the acceptability and feasibility of the pathways in practice. Methods: This study applied a mixed-methods design guided by the Medical Research Council (MRC), the Practical Robust Implementation and Sustainability Model (PRISM), and symbolic interactionism approach. It consisted of three consecutive phases: Phase 1 (exploratory interviews); Phase 2 (pathway development); and Phase 3 (acceptability and feasibility study). Phase 1 involved key stakeholders in Indonesia and asked their views and experiences of HDP management in primary care. Phase 2 applied three-round Delphi survey to achieve experts’ consensus on HDP recommendations and develop HDP pathways in primary care, and in Phase 3, the pathways were implemented in three public primary care clinics (Pusat Kesehatan Masyarakat (Puskesmas)) in Yogyakarta to determine their acceptability and feasibility in practice. The pathway implementation was evaluated using clinical audit data and triangulation of observation, interviews and focus groups (FGs) with primary care providers, patients, obstetricians and a health officer. Results: Twenty-four stakeholders participated in Phase 1. The primary care providers mainly referred HDP women to hospitals with limited performed managements before and after the referrals. The HDP management was also challenged by providers’ limited confidence, fragmented continuity of care, and certain beliefs in the community. The participants also raised the possibility of developing surveillance procedures for HDP women, particularly to improve coordination between Puskesmas and private primary care clinics. In Phase 2, 52 experts were recruited to participate in a three-round Delphi survey, and 48, 45, and 37 of them completed the first, second, and third-round survey respectively. Of the 125 tested statements, 115 achieved consensus and were used to develop the HDP pathways, consisting of (i) an HDP diagnosis flowchart, (ii) an HDP management pathway and (iii) an HDP surveillance pathway in primary care. In Phase 3, 55 providers and 61 patients participated in the study, and 48 of them participated in evaluation interviews/FGs. Primary care provider participants attempted to apply recommendations in the pathways and said that the pathways were able to improve their practice. Implementation barriers were also identified, which were mainly related to hierarchical relationships, professional boundaries, and limited clinical resources in primary care. Conclusion: A set of HDP management pathways for Indonesian primary care have been developed and shown to be acceptable and feasible in practice. The pathways can be used for improving the quality of HDP management and have the potentials for more extensive implementation in primary care. Further research is needed to minimise the identified implementation barriers of the pathways before their scale-up study in primary care settings.
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ItemFriends' responses to young women experiencing intimate partner violence: a qualitative study with young women and friends( 2021)Young women are more likely than older women to be subjected to abuse from an intimate partner, though they rarely seek professional help. Instead, they most often disclose the abuse to their friends. In many cases, friends also witness or notice signs of intimate partner violence (IPV). Thus, friends may be critically important sources of support for young women. Yet there is limited research on how young women perceive the responses of friends, and no study appears to have examined how friends perceive responding to IPV. This hinders the ability of health and welfare professionals to develop effective interventions to guide friends on how to support young women experiencing IPV. To address this gap, the aim of this PhD study was to explore the interactions between young women experiencing IPV and their friends from the perspectives of both young women and friends. The study was underpinned by a feminist socio-constructionist epistemology and influenced by narrative methodologies. In-depth interviews were held with eight young women who had experienced IPV. Separate interviews were undertaken with 13 young people who had been a friend of a young woman who had experienced IPV. A thematic narrative analysis of the stories told by interview participants identified that the interactions between young women and friends in relation to IPV had often ended in disappointment, with friends narrating frustration and helplessness, and young women describing feeling misunderstood and judged. A further analysis of the young women’s interviews was undertaken using the Listening Guide method to explore how friends’ responses to the IPV shaped young women’s self-perceptions. The analysis identified that when friends had expected them to leave the abusive relationship but they had been unable to do so, the young women perceived themselves as weak or stupid. However, when friends had recognised the challenges they faced in ending the abuse, it had a transformative impact on how young women perceived themselves. Finally, a thematic analysis of the interviews with friend participants found that the dynamics, emotions and conflicting expectations associated with friendship had influenced how friends perceived their role and created tensions in deciding how to respond to IPV. Through using different qualitative methods, the study provides a rich, multi-layered understanding of the interactions between young women experiencing IPV and their friends, and the individual, relational and sociocultural factors that influence their interactions. The findings reveal that the ways in which friends respond to IPV can have significant implications for how young women perceive themselves. For friends, offering support can be challenging and can affect the dynamics of the friendship and their own wellbeing. Dominant cultural narratives about responses to IPV, as well as the expectations and emotions associated with friendship appear to be key factors that shape friends’ responses. Together, the study’s findings offer valuable information for the development of interventions for friends of young women experiencing IPV. Such interventions can equip friends to offer effective help and can also support them with the significant impacts and dilemmas they may face in responding to IPV.
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ItemDevelopment of a Data Quality Management Guideline for Patient Generated Health Data in Remote Patient Monitoring( 2021)Abstract: Patient-Generated Health Data (PGHD) collected from innovative medical and consumer wearable technologies are enabling healthcare to shift from inside clinical settings to outside of them through Remote Patient Monitoring (RPM) initiatives. RPM enables continuous monitoring of patients while they are mobile outside the clinical environment and has the potential to empower patients in their health self-management and improve their clinical outcomes. However, PGHD are being collected on an ongoing basis under the patient’s or caregiver’s responsibilities in rapidly changing circumstances during the patient’s daily life. This poses risks to the quality of PGHD and, in turn, reduces their trustworthiness and fitness for use in clinical practice. This issue is limiting the use of such data in RPM, to project-oriented and short-term services that are not incorporated into clinical workflows as part of routine clinical practices. Although there are Data Quality Management (DQM) guidelines for the clinical data routinely collected inside clinical settings, no systematic approach exists to assure the quality of PGHD, whether captured from medical or consumer wearables, so that these data offer the basis for safe patient care. This thesis aimed to address this problem, using a socio-technical health informatics lens to investigate cow can DQM assure that PGHD from medical or consumer wearables are fit for use in clinical care. Following a recognised guideline development process, using five qualitative studies, this thesis developed a DQM guideline for PGHD that stakeholders can use to enhance the value of these data in routine clinical practice. PGHD stakeholders who have experience in RPM were involved in two studies: first, in-depth interviews to identify DQM challenges; and second, a workshop to co-design potential solutions to meet the needs and expectations of stakeholder groups. Next, findings from these two studies, along with results from a preliminary and updated literature review, and a policy review, were interpreted to construct the guideline. The resulting DQM guideline for PGHD comprised 19 recommendations across seven aspects of data quality: accessibility, accuracy, completeness, consistency, interpretability, relevancy, and timeliness. The guideline explicitly addressed the needs of key PGHD stakeholders - patients and clinicians - and it implied that there must be collaboration among all stakeholders, to meet these needs. The final qualitative study in this thesis validated the guideline by seeking experts’ opinion on its likely contribution to the safety and quality of care in RPM. Using the Delphi method, the guideline was distributed via an online survey among international health informatics and health information experts. There was consensus that the guideline’s recommendations are essential to delivering safe and high-quality RPM services. The increasing proliferation of PGHD from health wearables in RPM requires a systematic approach to enable the reliability of these data for use in clinical care. This thesis provided early, significant steps toward practising DQM of PGHD for incorporation into routine clinical practices.