General Practice - Theses
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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.
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ItemApproaches to targeted colorectal cancer screening in Australia: bridging the gap between epidemiology and impact( 2021)In most countries, who should be screened for colorectal cancer (CRC) is determined by age and family history of disease. Risk prediction models add genomic and/or lifestyle risk factors and are able to predict CRC risk more precisely. If these models were implemented within current population screening programs, more cancers could be detected by screening fewer people, as people at elevated risk are more effectively identified. Behavioural interventions for screening participation could also be targeted, increasing uptake of screening and reducing risky health behaviours. Measures of clinical utility evaluate how useful a model is to direct clinical interventions and to assess associated implementation aspects. This PhD sought to answer the research question: what is the clinical utility of two CRC risk prediction models, one incorporating genomic risk factors, the other lifestyle factors, for tailored population CRC screening in Australia? The first study (Chapter 2) compared the risk stratification and potential clinical impact of the two risk predication models, separately and together, across a range of implementation scenarios in the context of Australian population CRC screening. Use of a genomic and/or lifestyle risk prediction model identified additional people at increased risk that would benefit from colonoscopy, and those at lower risk who could potentially delay screening. Category-based scenarios of broad risk groups provided good balance between number of screens and cancers detected. These findings provide a modelling framework for risk-stratified CRC screening to further model impact on mortality and cost-effectiveness. The second study (Chapters 3 to 6) consisted of 150 general practice patients aged 45-74 recruited sequentially from four practices. After a brief discussion that could be replicated in general practice about the implications of a genomic risk test for CRC, each participant was offered the test. Risk results and tailored screening recommendations were given to those who chose to do the test. In-depth interviews were also conducted with a subset of sixteen participants. Uptake of the genomic test was high (84%), indicating acceptability. Qualitative data revealed that the decision to do the genomic test was easy for most and participants had few reservations about taking the test. 73% of participants made an informed choice about the test. A minority of participants did not understand the implications of the test so did not make an informed decision and a few had concerns about its possible implications so chose not to do it. Based on responses to a series of validated questionnaires, there was minimal psychosocial impact of the genomic test. There was limited evidence that genomic testers were more likely to complete their CRC screening compared to non-testers, but some mediators of screening behaviour were altered in genomic testers. The genomic results promoted screening and/or discussion with GPs regarding screening but only for some. Results from this study have been used to strengthen the behavioural impact of genomic results presentation and discussion before trialling its effect on screening behaviour in a newly funded RCT. There is clinical utility of two CRC risk prediction models for targeting CRC population screening in Australia. Genomic testing for this purpose is acceptable and could be feasible within general practice, suggesting patients can make informed choices regarding testing in this setting and with little risk of adverse psychosocial impacts from testing. Further work is underway to refine and test this intervention that aims not only to recommend the right CRC screening based on risk but encourage adherence to those recommendations. This thesis has contributed significantly to the literature on risk-stratified CRC screening and concludes by summarising how it may be implemented in practice.
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ItemNo Preview AvailableExploring the use of technology to address barriers Indigenous peoples experience when help-seeking for family violence( 2020)Australia’s Indigenous populations experience high rates of family violence but are less likely to access support than non-Indigenous peoples. Mainstream family violence responses have rarely been informed by Indigenous perspectives, and as a result are often not embraced. Although online family violence resources have been well received by non-Indigenous communities, their acceptability to Indigenous peoples has yet to be determined. This thesis engaged with an Indigenous Australian community to understand their perceptions of help-seeking behaviours for family violence and respond to the barriers experienced when pursuing support. Further, this thesis explored the potential for technology as an acceptable resource for those impacted by Indigenous family violence, and what elements an online resource would need have for it to be engaging and usable. To address these aims, a series of methods were used. Firstly, a scoping review was undertaken to identify the help-seeking barriers experienced by Indigenous peoples globally. Then, Community-Based Participatory Research (CBPR) methods were used for addressing the localised help-seeking barriers and exploring the acceptability and elements of online resources for Indigenous family violence. Following a Canadian framework for collaborative research developed with Indigenous peoples, the CBPR methods began by working closely with an Indigenous population on a community-identified need. After establishing trust and seeking approval for the research, an Aboriginal Community Advisory Group was formed and guiding principles for the collaborative research were established. Then, working with the Aboriginal Community Advisory Group, appropriate CBPR methods for addressing the aims of the research were identified. To understand the local perspectives on help-seeking behaviours for Indigenous family violence, interviews took place with fourteen Indigenous women and nine men. These interviews also explored the potential for online family violence resources for Indigenous peoples. Findings from the interviews were then complemented with a round of focus groups where the use of technology for responding to family violence was discussed. Finally, to enhance the likelihood of developing an online resource that was engaging and acceptable to Indigenous peoples, a further round of focus groups and Aboriginal Community Advisory Group deliberations informed the understanding of the elements needed in an appropriate resource. These methods also led to the co-design of an online resource for the Indigenous community involved in the research. This thesis presents the findings in three peer-reviewed articles and a model of suggested elements for online Indigenous family violence resources that can be adapted for other communities. The findings suggest that Indigenous peoples avoid accessing formalised services for family violence because of the substantial barriers they experience such as shame, racism, and fear. One key original contribution to knowledge is that Indigenous peoples perceived online responses for family violence to be acceptable and anticipate that many barriers to support can be addressed through the use of technology. Other significant and new understandings include that Indigenous peoples want co-designed family violence resources that facilitate healing through connection to culture, community and country. This thesis provides evidence that systematic change is required to prioritise the respectful treatment of Indigenous peoples accessing support for family violence. Implications at the practice level include that service providers need cultural training – informed by Indigenous knowledge – to provide culturally safe care so Indigenous peoples can overcome fear and access support. Technology has a role to play in providing accessible support for Indigenous family violence survivors in the practice space. Finally, research implications include opportunities to expand knowledge on the link between culture and healing. Using CBPR methods, non-Indigenous research teams can work respectfully with Indigenous knowledge holders to highlight their voices and create appropriate and useful solutions for community-driven needs.