Melbourne School of Population and Global Health - Theses
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ItemThe significance of the child’s voice in child death inquiries( 2019)International agreements on human rights declare that all children should have the opportunity to express their views on their lives and experiences. When it comes to children who are involved with child protection services, however, research from a number of countries suggests that their perspectives are rarely represented. In Australia, each year, around 3% of children are involved with child protection services because of concerns about their safety and well-being. I wanted to understand how professionals in Victoria represent the voices of children subject to child protection services. With child protection services files not accessible for privacy reasons, to pursue my research question I used the reports of 14 child death inquiries conducted by Victoria’s Commission for Children and Young People. The Commission for Children and Young People is mandated, under particular circumstances, to inquire into the deaths of children who were child protection services’ clients at the time of death or within 12 months of their death. These inquiries examine the services provided to the child and his/her family, prior to the child’s death. The children’s deaths that I explored occurred over a decade from 1 January 2005. In all 14 cases, the child died in adolescence, having been subject to a report to child protection services before the age of three. I asked how did professionals who came into contact with the 14 children describe and document the child’s voice and experience? I asked what these children said, literally or metaphorically, about their lives, experiences, and their feelings. Using a conceptual framework of child development and attachment theory, my methodological approach was content and discourse analysis of documentary texts produced by the Commission. Seen through the lens of Commission for Children and Young People inquiries, my research shows that child protection service documentation in Victoria, at best, minimises and, at worst, completely excludes the perspectives of children, particularly very young children. These results mirror child protection services practice internationally. I hypothesise why this silencing of children’s voices occurs in Victoria’s child protection service files. I outline a new approach to listening to children’s voices and experiences, and a new mechanism to document those voices in child protection service files. Called the Child’s Life Biography Tool, this instrument is intended to be a means of valuing and protecting the child, fulfilling the child’s human rights, while also meeting legislation, policy and practice requirements.
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ItemIs it ever ethically justifiable for clinicians or the state to restrict or refuse ART access?( 2019)Individuals seeking to reproduce non-sexually require access to assisted reproductive technologies (ART) in order to pursue their dream of forming a family. A widespread view in the literature on reproductive rights, and in the broader community, holds that access to ART treatment constitutes a component of reproductive liberty. On this view, decisions about utilising ART sit within the same autonomy and privacy that is universally accorded to sexual reproduction. This implies that restricting or refusing ART access to anybody seeking to have a child non-sexually violates their right to reproduce. I reject this view, and the arguments that underpin it. The grounds upon which clinicians or the state can justifiably restrict or refuse access to available ART treatment form the basis of this thesis. I commence this thesis with a critical analysis of moral theory on reproductive rights, exploring how the right to reproduce has been understood as a liberty, and then as a right in the philosophical and bioethical literature. I suggest that the way the term ‘reproduction’ is understood in the literature goes beyond the elements of the biological process of human reproduction itself. In short, I demonstrate that reproduction includes the begetting and bearing of a child that is born but does not include rearing within its definitional scope. This position represents an original and, I argue, theoretically significant departure from current understandings of reproduction in the literature. I identify two positions in the literature on reproductive rights: the predominant and dissenting. I critique both. The predominant position fails to adequately recognise the collaborative nature of all reproductive projects – both sexual and non-sexual. The importance of this point then attaches to the grounds upon which ‘others’ asked to assist with non-sexual projects have either a liberty or duty to assist. The predominant position holds that the reproductive right is only negative, but then argues this negative right protects positive claims to ART treatment within its scope, which I demonstrate is conceptually inconsistent. The predominant position regards fertility clinicians as morally devoid automata, whereas I argue that the clinician has assertable moral rights and responsibilities within the treatment paradigm. ART produces a child. This other-regarding nature of reproduction is also substantively unrecognised in the predominant position. I broadly support the dissenting position, which argues for the interests and wellbeing of the future ART child to be taken into consideration in ART treatment access decision-making. However, I demonstrate that the rights of the future child do not compete directly with the reproductive desires of the hopeful parent. Rather, I propose that the competing interests are the hopeful parents and all the others collaboratively involved in the reproductive project. Next, I sketch out sexual and non-sexual reproductive projects, identifying each of the stages and who does what at each stage. This then informs my critical analysis of the grounds upon which each individual is involved in a non-sexual reproductive project. I conclude that clinicians and the state have moral rights to restrict or refuse to be involved in non-sexual reproductive projects, because they have a measure of moral responsibility towards the future ART child, who they are causally involved in creating. While Derek Parfit’s ‘non-identity problem’ is often cited as an objection to considering the interests of the future ART child, I additionally demonstrate that my position can accommodate Parfit’s argument.
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ItemThe role of family history in colorectal cancer screening in East Asia( 2019)Background Globally, colorectal cancer is one of the leading causes of cancer related death. Asia has had relatively low incidence rates of colorectal cancer when compared with western countries. Over the last decade, however, occurrences have increased in many Asian countries. In East Asia, colorectal cancer incidence has been increasing over the last few decades; however, many countries are still lack of strategies on colorectal cancer screening. Colorectal cancer screening guidelines in many Western countries use family history information when assigning people into different risk categories to recommend for frequency and intensity of screening strategies. However, the relationship between family history and colorectal cancer and adenoma risk has not been well studied in Asian countries. Given that family structure and environmental exposures are likely to be different in Asian countries it is assumed, the association may also prove to be different. Aims This thesis aimed to investigate the role of family history of colorectal cancer in colorectal cancer screening in East Asian countries. Method This thesis includes the following five studies addressing the gaps in knowledge of the role of family history in colorectal cancer screening strategies. The main database for this thesis is the prospective data of 175,000 men and women from three countries (Japan, Korea, and China) who have been recruited into the Asia Cohort Consortium (ACC, https://www.asiacohort.org/). 1. A literature review of current colorectal cancer screening guidelines in Asian countries. 2. A systematic review of studies on the association between family history of colorectal cancer and the risk of colorectal cancer in Asian countries. 3. A pooled analysis of six prospective cohorts from Asia Cohort Consortium to investigate the association between family history of colorectal cancer and the incidence of colorectal cancer in Asian countries 4. A pooled analysis of six prospective cohorts from Asia Cohort Consortium to investigate the association between family history of colorectal cancer and the mortality of colorectal cancer in Asian countries 5. External validation of the Asian-Pacific Colorectal Cancer Screening (APCS) Score using six prospective cohorts from Asia Cohort Consortium. Results Firstly, from the meta-analysis, the association of colorectal neoplasia with having at least one first-degree relative family history of colorectal cancer differed by Asian region: being 1.69 (1.46, 1.96) for East Asia; 3.44 (2.32, 5.10) for Western Asia and 5.14 (2.44, 10.8) for South-Eastern Asia. The strength of associations between family history of colorectal cancer and the risk of colorectal cancer and adenoma for East Asia was similar to that of Western populations but higher for Western and South-Eastern Asia. This information will be useful to triage the populations in Asian countries for colorectal cancer screening by the strength of family history in different regions of Asia. Secondly, with the pooled analysis of exist data from the Asia cohort consortium, the family history of colorectal cancer associated with a higher risk of incidence of colorectal cancer in Asian countries. Thirdly, the evidence from family history and mortality, this is no evidence for an association between family history of colorectal cancer and overall survival or colorectal cancer-specific mortality. However, specific mechanisms underlying family history may have a prognostic impact and merit further study. Future studies need to collect data on possible confounders of the effect, such as tumor stage at diagnosis, presence of multiple cancers, mode of presentation to hospital, and surgical or clinical management in order to produce more conclusive results. Last, the APCS scores were efficient to identify individuals with a high risk of colorectal cancer in the East Asia population. Conclusions This thesis has generated new knowledge about family history and the risk of colorectal cancer in East Asia. The systematic review and meta-analysis demonstrate that there is large heterogeneity in the association with colorectal neoplasia with having at least one first-degree relative family history of colorectal cancer differed by Asian regions. Family history could be a useful tool for colorectal cancer screening program but might not be associated with the mortality of colorectal cancer. APCS scores can effectively identify individuals with a high risk of colorectal cancer in East Asia. The feasibility and acceptability of the APCS score to the general population in Asia will need to be further examined.
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ItemThe Economic Impact of Non-communicable Diseases on Household Welfare in China( 2019)Introduction The rapidly rising burden of non-communicable diseases (NCDs) in China affects the demand for healthcare services among households and threatens to create an increased financial burden on households, at a time when economic growth has been slowing down and traditional forms of inter-generational support are in decline. However, the design of effective policies to address household impacts of NCDs in China is hindered by a lack of high-quality work on the economic roots of NCDs, the impact of NCDs on households and economic gains that might result from policy action to address NCDs. This thesis aims to fill this gap by investigating the association between socio-economic characteristics and behavioural risk factors and NCD onset, by estimating the economic consequences of NCDs on current and future household welfare associated with coping strategies and by estimating the economic consequences of delayed treatment for NCDs. Methods This thesis consists of three quantitative analyses, all of which use longitudinal datasets. Study One uses three waves of longitudinal data from the China Family Panel Studies survey (CFPS, 2010-2014) and a dynamic model conditional on not having an NCD in the initial period to estimate the effects of behavioural and socio-economic risk factors on the onset of NCDs among individuals in China. Study Two uses the same dataset from CFPS over 2010 and 2014 and fixed-effect models to examine whether households in China can maintain consumption expenditures in the face of a new NCD diagnosis and how the households cope with the diseases and the consequences of the coping mechanisms. Study Three draws data from the China Health and Retirement Longitudinal Study (CHARLS, 2011-2015) and applies difference-in-differences (DID) methods on a matched dataset of individuals to estimate the effects of variation in treatment timing (i.e. early versus late treatment) on healthcare use and health spending among individuals newly diagnosed with hypertension. Results Study One shows that being obese, using solid cooking fuels, a history of frequent drinking, and a higher level of household total consumption expenditure during the preceding period were positively associated with NCDs. More importantly, through disaggregating the effects by age subgroups, it shows that some risk behaviours one established decades ago (such as frequent drinking) have long-term and accumulative effects on health, even people have changed behaviour at older ages. Study Two reveals that (non-poor) Chinese households that experienced a substantial increase in out-of-pocket (OOP) health expenditures following an NCD shock can smooth consumption expenditure, through the depletion of housing assets and receipt of public transfers. For poor households, there was no significant increase in health expenditures and no effects on household consumption and assets, suggesting that they might abandon treatment. Both the non-poor and poor were paying the price, the first group in terms of future wealth and the second in terms of health. Study Three suggests that patients who started treatment late spent more on health services and were more likely to incur catastrophic health expenditures (CHE) once they initiated treatment, relative to counterparts who began hypertension treatment earlier. Hypertensive patients having started treatment earlier experienced declines in the probability of incurring health expenditures in the subsequent period. Implications In conclusion, NCDs have a long-term impact on household welfare in China. Ignoring the economic cost associated with coping with NCDs and with delayed NCD treatment, can underestimate the costs in the future. Public intervention policies to address the emerging risks of NCDs at an early stage, and insurance policies to protect individuals and households from potentially catastrophic expenses of treating NCDs are needed.
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ItemImproving Women's Uptake and Retention in Option B+ Prevention of Mother-to-Child Transmission of HIV in Papua, Indonesia( 2019)Background Mother-to-child transmission (MTCT) accounts for 90% of HIV in children. Globally, HIV has resulted in the deaths of 120,000 children. African countries have reduced MTCT risk from 25-30% to less than 5% through prevention of MTCT (PMTCT) using antiretroviral therapy (ART), elective caesarean section, and replacement feeding. Indonesia implemented PMTCT in 2004, yet the MTCT risk (26.6%) remains the highest in the world. MTCT is the second cause of new HIV infections in Papua, Indonesia. Nearly half of (29,083) HIV-infected people in Papua are women within childbearing age of 15-49 years. Despite the implementation of Option B+ PMTCT in Papua since 2012, new HIV infections in children continue to rise, suggesting low PMTCT coverage or ineffective PMTCT programs. There was limited literature on PMTCT implementation and outcomes in Papua. This research aims to investigate the performance of Option B+ PMTCT in Papua and to identify factors that influenced women’s uptake, adherence, and retention in the program. Methods This research used a mixed-methods research design comprising of three studies: 1) Papua Study, 2) Indonesia Study, and 3) Global Study. Study 1 included field observations and in-depth interviews of 20 HIV-positive women and 20 PMTCT health workers in Papua. Study 2 involved analyses of PMTCT data in Indonesia in 2017, and Study 3 comprised a realist review of Option B+ for PMTCT in resource-limited settings. Results Using a quantitative approach, Study 2_Indonesia found high ART uptake (98%) but low ART retention (33%) in Papua. Health facility characteristics that predicted women’s retention in PMTCT program were hospitals, hospitals class A/B, generalized HIV epidemic, and high HIV program priority. Using a realist synthesis approach, Study 3_Global identified three program theories, consisting of Context-Mechanism-Outcome Configurations of Option B+ PMTCT in resource-limited settings. The program contexts identified are similar to the factors identified in Studies 1 and 2. Mechanisms identified in Study 3_Global included: women’s willingness, readiness, and motivation to participate in Option B+ PMTCT; and health workers and women’s confidence in the PMTCT program. These mechanisms are triggered by enabling program contexts to achieve the desired outcomes. Conclusions This research contributes to a greater understanding of Option B+ PMTCT in Papua by describing program performance using local data and identifying factors that influenced women’s uptake, adherence, and retention. Findings suggested an improvement of women’s participation through the creation of enabling program contexts. Recommendations include: provision of high-quality HIV counselling to increase women’s belief in ART efficacy or to gain partner support, reduction of community stigma and discrimination through campaigns, training to improve health workers’ skills to deliver the program, availability of clear guidelines to ensure high quality PMTCT services are delivered, and continuation of free HIV services to reduce financial burden. Future studies are warranted to investigate cultural factors related to pregnancy care in Papua, and to identify mechanisms that are likely to be more influential to increase women’s uptake, adherence, and retention in Option B+ PMTCT in Papua.
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ItemThe role of health behaviours in colorectal cancer risk and screening uptake( 2019)Background The burden of colorectal cancer is high in developed countries and is now increasing in developing countries. Socioeconomic disparities in colorectal cancer incidence and screening uptake are global issues. Identifying the mediator of the association between socioeconomic status and colorectal cancer will guide appropriate public health interventions to reduce the burden of colorectal cancer. The aims of this thesis were to estimate the associations between socioeconomic status and colorectal cancer outcomes and identify mediators of the associations. Methods To demonstrate the current stage of knowledge, systematic reviews and meta-analyses were conducted to estimate the association between socioeconomic status (educational attainment, income and composite socioeconomic status indicators based on area of residence) and colorectal cancer outcomes (screening uptake and risk). Subgroup analyses and sensitivity analyses of the meta-regression were conducted to assess the covariates’ effect on the pooled result estimates and the heterogeneity. To identify the mediators of the association between socioeconomic status (educational attainment and Index of Relative Socioeconomic Disadvantage (IRSD)) and colorectal cancer outcomes (screening uptake and risk), mediation analysis (medeff and paramed commands) based on the counterfactual framework was performed. The possible mediators were health behaviours (obesity and smoking) and colorectal cancer screening uptake (for risk of colorectal cancer). The Australasian Colon Cancer Family Registry was used in the analyses. Results For colorectal cancer screening, people in the higher socioeconomic status groups were more likely to participate in colorectal cancer screening than those in the lowest socioeconomic status groups. The meta-analyses showed moderate to high heterogeneity between studies, which was partially explained by the country in which the study was conducted. For risk of colorectal cancer, the risk of rectal cancer was higher for people in the lowest socioeconomic status groups compared to those in the highest socioeconomic status groups. Heterogeneity between studies was partially explained by continent of study and study design. For colorectal cancer screening, the mediation analysis showed that 13.7% of the association between educational attainment and colorectal cancer screening uptake and 15.5% of the association between IRSD and screening uptake were mediated via smoking. For risk of colorectal cancer, the mediation analysis showed no evidence of the mediated effects of health behaviours and colorectal cancer screening uptake on the association between socioeconomic status and risk of colorectal cancer. Conclusion Socioeconomic disparities in colorectal cancer are persisting globally and in Australia. I found evidence of the mediated effect of health behaviours on the association between socioeconomic status and colorectal cancer screening uptake. Advances in mediation analysis such as multiple mediator models and simulation studies will enable more comprehensive analyses of the socioeconomic disparities in colorectal cancer.
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ItemNutrition and oral health in the early years: Trends and influences in children aged 0-5 years( 2019)Background Establishing healthy dietary intakes in childhood is important for growth, development and the prevention of overweight/obesity and many non-communicable diseases such as dental caries. There is a lack of longitudinal data on children’s dietary intake between birth and five years. A substantial proportion of Australian children are regularly cared for by their grandparents, yet there is little research exploring the influence of this environment on child health. The aim of this thesis is to describe what young children are eating across the first five years of life and examine the role that informal care, particularly grandparent care, plays in the promotion of nutrition and oral health behaviours in early childhood. Methods This thesis was guided by socio-ecological models of health and comprises four studies: 1. Examining the validity and reliability of a food frequency questionnaire (FFQ) for use with young children and pilot testing new context of eating questions (quantitative, primary data collection); 2. Exploring food and beverage consumption in Victorian children between 6 months and five years of age (secondary analysis of data from an existing birth cohort study); 3. Examining dietary intake and oral health/hygiene behaviours in three to four year old children and the association with attending formal and/or informal care (secondary analysis of data from an existing birth cohort study); 4. Exploring the role of the grandparent care environment in the promotion of nutrition and oral health behaviours (qualitative interviews with parents and grandparents). Results The FFQ is reliable and valid for use at a group rather than individual level however, the context of eating questions require further development. Discretionary foods are observed in the diets of children as early as six months of age and become more common as children get older. Living in a regional area, having an older parent or parent with high fruit and vegetable intake was associated with more frequent consumption of core foods between 6 months and 5 years of age. A socio-ecological model demonstrating the range of factors which influence nutrition and oral health in the grandparent care environment was developed. Communication between family members, knowledge, past experience and perception of roles are key influences on nutrition and oral health in this environment. Conclusion This PhD research contributes new knowledge about the dietary intakes of young children in Australia and the influence of grandparent care on dietary intake and oral health care behaviours. Early introduction and consumption of discretionary foods and drinks has ongoing implications for a range of health issues including dental caries, overweight and obesity. Dietary intake and oral health behaviours in young children are influenced by a complex mix of factors across different socio-ecological and physical environments. Grandparent care is one such environment where provision of food and oral health behaviours are influenced by a range of factors and are underpinned by the relationship dynamics within a family. Opportunities exist for further research and health promotion interventions involving grandparents.
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ItemWhat is quality of life for children with cerebral palsy? A constructivist grounded theory approach with implications for measurement( 2019)Cerebral palsy (CP) is the most common physical disability in children in Australia and other high-income countries (Reid et al., 2016; Shaunak & Kelly, 2017). CP has permanent consequences across many areas of life from children’s early development throughout the lifespan. In research and health service settings, quality of life (QOL) is recognised as a useful conceptual model for measuring subjective wellbeing across many areas of life, including those that may be impacted by various health conditions. Generic measures aim to capture QOL for all people, while condition-specific measures have been developed to address specific aspects of life that may be affected by specific conditions, such as CP. Four CP-specific measures of QOL have been developed for children, but there are shortcomings in both current conceptual understandings of QOL for children and in these measures, particularly in their inclusion of the views of children themselves. This thesis aimed to develop a constructivist grounded theory of QOL for children with CP including the views of children with CP and of their parents, and to compare this to the content of CP QOL-Child (Waters et al., 2006), an existing condition-specific measure of QOL for children with CP. In-depth, open-ended interviews were conducted with 18 families of children with varying severity of CP, including 19 parents of children aged five to 12 years. Eight of the children aged nine to 12 years with mild or moderate CP also completed individual interviews. Interview topics ranged over many facets of child and family life, focussing on aspects that were beneficial or a hinderance to a good child QOL. Interviews were analysed using constructivist grounded theory methods proposed by Charmaz (2014). These methods are appropriate to research focusing on understanding lived experiences of participants and led to developing QOL theory that centred child and parent perspectives. Child interviews used a flexible child-friendly approach, including multiple strategies such as visual prompts and drawing materials. The use of multiple strategies contributed to child engagement and added to the richness of the data gathered, both in children’s responses to the interviews and in the process of analysis. Analysis of child interviews included examining interactions within the interview, which helped to expose disability-specific assumptions and identities. Overall, child and parent findings mirrored the same main contributors to child QOL, with some exceptions. Children provided greater insight into the complex impacts of social relationships on their QOL, while parents provided detail of wider family functioning that children may be unaware of, such as managing finances and balancing time between childcare and other responsibilities. For both children with CP and their parents, children’s QOL was the result of interactions between person and environmental factors, including issues of accessibility and inclusion. Through relationships with family members, peers, teachers, aides, and other adults in their lives, children negotiated for adaptations to overcome environmental barriers and achieve QOL goals. For parents, supporting child QOL began from the time of diagnosis, and included day-to-day management as well as future considerations for themselves, their children, and other family members. Parents worked towards good QOL for their children through hierarchical tasks, from basic care needs, to participation goals, to future considerations and advocating for systemic change. The interactions between individual personal factors and environmental circumstances reflected in the findings support socio-ecological underpinnings of QOL definitions, and social models of disability. QOL research for children with disabilities would benefit from improved conceptual models of QOL that include disability models and are based on child data for child self-report measurement models, with parent report encompassing family QOL concepts.
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ItemSocioeconomic inequalities in health care and financial protection among people with non-communicable diseases in China( 2019)In address the burden of non-communicable diseases (NCDs) and achieve the universal health coverage, China officially launched the New Health System Reform in 2009. This thesis investigated trends and socioeconomic inequalities in the healthcare utilisation and financial protection among patients with NCDs in China, using two nationally representative datasets. The findings are useful for evaluating the performance of reformed health system and provide a complete picture for thinking about the socioeconomic disparity in healthcare for NCDs and multimorbidity in China.
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ItemModels of Indigenous community-controlled health care in Chile( 2019)For Indigenous peoples, community-controlled health services are a key means by which communities exert control in the planning, development and delivery of primary health care services and represent an avenue to ensure that health policy and services reflect Indigenous values and an understanding of their health needs. Sustainable implementation of community-controlled health services is strongly dependent on the existence of supportive policy, as well as a health system that is open, flexible and able to respond to external input. However, assessments of participatory health initiatives frequently examine the features of the initiative or program with minimal consideration of how the wider policy environment affects participatory processes. The current study examines the influence of local and distant factors on the effectiveness of Indigenous community-controlled health centres as participatory mechanisms, including interactions between international and domestic legislation and policy. Additionally, the research explored the applicability of lessons learned from countries’ experiences in Indigenous community participation in health to other international contexts. Case studies were undertaken with two Mapuche community-controlled health centres in Chile in order to gain perspective on the day-to-day workings and decision-making processes of the health centres. Interviews were also conducted with Ministry of Health personnel to provide a comprehensive picture of Indigenous health policy and stakeholders’ perspectives. Evidence from international experiences was then used to contextualise the Chilean findings and provide some guidance for strengthening Indigenous community participation in health both in Chile and internationally. Mapuche health administrators cited the existence of a wider system that was extremely resistant to external influence and ‘blind’ to Mapuche health as a key barrier to their work. As a result, Mapuche health centres were highly restricted in terms of their capacity to respond to local priorities and needs, even as staff considered the centres as potential vehicles for increased Mapuche political power within the health system. One of the primary aims of Indigenous community control, increased autonomy and self-determination, was thereby curtailed. Overall, the evidence indicates that international legislation alone carries little weight in facilitating consultation or engagement with Indigenous communities; however, these instruments can provide guidance to countries for the alignment of domestic policy with established principles. Such alignment both enables countries to adopt international agreements and subsequently facilitates implementation of the relevant principles and obligations. The research makes the case for approaches to Indigenous health policy that are undertaken with an eye towards building cohesion between legislation and policy across all levels to support engagement with Indigenous peoples. In conjunction with stronger political representation, incorporating the principles of reciprocal accountability into contractual agreements between the State and Indigenous health centres could support a shift towards relationships that are more equitable, provide greater stability for Indigenous health centres and facilitate increased latitude to respond to their communities’ needs appropriately. Analysis of Indigenous health policy, programs and services that takes a holistic perspective of the international, national and community-level factors impacting implementation would support decision-making in this area.