Melbourne School of Population and Global Health - Theses
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An exploration of key informant perspectives on factors influencing settlement of male Hazara youth who migrated to Melbourne as unaccompanied minors
Background: Globally, there has been an extraordinary growth in refugees and asylum-seekers in the past two decades. Australia experienced a dramatic increase in boat-arrivals in 2008–2013, with many being Afghan Hazara including unaccompanied asylum-seeker minors (UAMs). Global and Australian studies highlight the significance of providing UAMs with appropriate settlement services during their adjustment period, yet few ethno-specific studies have to date sought service provider perspectives on support provided to male Hazara UAMs pre-18 years and former UAMs (fUAMs) post-18 years. Methods: This qualitative study addressed this research gap using ecological systems theory and social networks theory in a dual-sector case study design to explore the perceptions of professional case workers (n=6) and voluntary English language teachers (n=6). Based on key informant views, this study focused on the expectations and experiences of male Hazara UAMs’ compared to fUAMs’ select settlement services during their early adjustment period (2015–2016) in Melbourne, Australia and how this support influences their settlement and wellbeing. Results: The findings indicate UAMs’ three-part migration trajectory (from Afghanistan, via transit countries to Australia) was perceived to be driven by classic push and pull factors and shaped by family separation. Following arrival, Australia’s immigration and settlement policies determined the type and level of support provision, with UAMs in community detention receiving maximum services while fUAMs in mainstream community being offered highly reduced services and temporary visas. English language was perceived to have strong influence on their early adjustment, and different forms of social networks could promote their socioeconomic participation. Despite UAMs experiencing potential risks pre-arrival, protective factors post-arrival, especially support services, could rebuild their resilience. Conclusion: This study has implications for asylum-seeker and settlement policies, casework practice, and researchers to leverage settlement process and wellbeing outcomes of this group of unaccompanied youths in Australia.
Adverse events following immunisation (AEFI): Optimising passive surveillance to improve immunisation safety in Victoria
Vaccines are a cornerstone of public health saving millions of lives each year, however, adverse events following immunisation (AEFI) are a reality. Comprehensive post-licensure vaccine safety surveillance is therefore essential to maintain confidence in immunisation, inform policy and ensure the ongoing safety of immunisation programs. Vaccine pharmacovigilance in Australia has been criticised and found inadequate due to its inability to inform on vaccine safety events in a timely manner. In 2010 this meant failure to prevent serious neurological sequalae arising from increased febrile reactions with one particular brand of influenza vaccine. Subsequent expert reviews of Australian AEFI surveillance proposed the Victorian state-level enhanced passive surveillance system “SAEFVIC” as a potential model system, with suggestion to expand to jurisdictions that did not have robust AEFI surveillance. However, despite this recommendation, no evaluation of SAEFVIC’s ability to provide effective vaccine pharmacovigilance had been undertaken. My doctoral research evaluates “SAEFVIC”, the Victorian AEFI surveillance system’s ability to detect and investigate emergent vaccine safety issues with the findings presented in a range of publications and discrete reviews. Within this thesis I have developed real-time investigation of vaccine safety issues, which have informed policy decisions on immunisation program delivery and ensured community confidence. Description of the system epidemiology provides a foundation for research integrity. Individual studies have identified opportunities for improvement and guided amendments to data collection to better inform on at-risk populations. I explored and applied a simple, feasible and replicable measure of disproportionality for signal detection enabling implementation of routine signal detection. The establishment of contemporary reporting and visualisation has contributed to national expansion of SAEFVIC as an integrated surveillance platform, markedly increasing national capability to provide “comprehensive and effective post-licensure AEFI surveillance critical to maintain confidence in immunisation and inform evidence-based policy for vaccine safety”. My research has provided the evidence-base to optimise the SAEFVIC passive AEFI surveillance system and—through translation of the findings into policy and practice—helped consolidate Victoria as a leader in Australian AEFI surveillance, a major southern hemisphere partner in global AEFI surveillance and ultimately made immunisations safer. The timeliness of my doctoral thesis has become prophetically pertinent in the midst of the 2020 global Coronavirus SARS-CoV-2 crisis, with calls for development and release of novel vaccines at “pandemic speed”, highlighting the need for robust and timely vaccine safety surveillance.
Trends and Inequalities in Cancer Survival in Victoria, Australia
Background: Cancer is the second-highest cause of mortality worldwide, accounting for 9.6 million deaths in 2017, and its burden on individuals, economy and health system is a global problem. Although Australia has a universal health-care system, cancer survival varies by socio-economic disadvantage. The magnitude and age-related patterns of these inequalities are not clear in Victoria, Australia and little is known about whether the gap in cancer survival is narrowing or widening over time. Despite strong evidence that sex is associated with the incidence and prognosis of several diseases, few studies have assessed differences in cancer survival by sex, and no Australian study has comprehensively evaluated the magnitude and temporal and age-related patterns of differences in cancer survival by sex. This thesis aimed to investigate inequalities and trends in cancer patient survival by sex, area-level socio-economic disadvantage and remoteness of residence and identify the underlying causes of socio-economic inequality in colon cancer survival. Methods: Six studies were designed and conducted to address the aims of this thesis. The first study was a systematic review of peer-reviewed published articles since 2005 that attempted to identify the underlying reasons for socio-economic inequalities in cancer survival. The second study was a systematic review of peer-reviewed published articles that assessed the association of rural-urban residence with cancer survival in high-income countries and summarised the current evidence in relation to potential contributing factors to the observed differences in survival between rural and urban regions. Studies 3, 4 and 5 used the Victorian Cancer Registry data to assess differences in cancer patient survival by sex, area-level socio-economic disadvantage and remoteness of residence. Study 6 used population-based linked health data to identify factors explaining socio-economic inequalities in colon cancer survival. Net survival was estimated using the Pohar-Perme method. Inequalities in survival were modelled using Poisson regression to estimate excess mortality rate ratios. Interventional causal mediation analysis was used to assess the underlying reasons for socio-economic inequalities in colon cancer survival. Results: Findings from the first systematic review suggest that socio-economic inequalities in cancer survival appear to be partly explained by differences in disease stage, health-related behaviours, co-morbidities and treatment modalities. The second review shows that rural cancer patients generally have worse survival compared with their urban counterparts. The underlying reasons for survival disadvantage for rural patients are not well known, but possible contenders include differences in lifestyle behaviour, stage of cancer at diagnosis, co-morbid conditions, and treatment modalities. Findings from analysing the Victorian Cancer Registry data suggest that cases living in more socio-economically disadvantaged areas or outside major cities generally had lower five-year survival than their counterparts living in less disadvantaged regions or major cities. In addition, men showed lower survival from most cancers than women. The observed socio-economic inequalities for colon cancer survival were not explained by variations in stage at diagnosis or surgery. Not receiving chemotherapy within 8 weeks after surgery, emergency admission prior to diagnosis and receiving surgery at a public hospital appeared to partly contribute to lower survival for men with stage III colon cancer living in the most disadvantaged areas, although this observation might be due to unmeasured characteristics of disadvantaged men receiving surgery in public hospitals rather than public/private hospitals themselves. Conclusions: This thesis has shown that inequalities in cancer patient survival by sex, area-level socio-economic disadvantage and remoteness of residence exist and have persisted over time, even though Australia has a universal health care system. Monitoring the magnitude of these inequalities and conducting high-quality research to identify the underlying reasons for inequalities in cancer survival is important to prioritise actionable factors to improve cancer outcomes for all patients.
Improving Women's Uptake and Retention in Option B+ Prevention of Mother-to-Child Transmission of HIV in Papua, Indonesia
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.
Mortality Patterns in Papua New Guinea
Abstract Introduction Little is known about mortality rates and cause of death (COD) patterns in Papua New Guinea (PNG), because there is a lack of high-quality mortality data. The use of demographic and statistical models which use no local data to estimate mortality has created much uncertainty about actual mortality and COD patterns in PNG. This thesis aims to address this knowledge gap by applying novel demographic and statistical methods to available local data to estimate all-cause mortality (adult mortality, child mortality and life expectancy) and COD by sex for PNG and each of its provinces. Methods A range of demographic and statistical methods were used to estimate mortality rates and COD patterns. The adult mortality rate (45q15) was estimated using the orphanhood method applied to data reported in the 2000 and 2011 national censuses. The under-five mortality rate (5q0) was calculated using the maternal age cohort method using summary birth history data from the 2000 and 2011 national censuses. The 45q15 and 5q0 estimates were entered into model life tables to produce estimates of life expectancy at birth. Cause-specific mortality fractions (CSMFs) were calculated as the average of estimates obtained from two methods: the empirical cause method and the expected cause patterns method. A composite index was constructed using the means of education, economic and health access indicators from various data sources to assess the plausibility of mortality and COD estimates. Results The 45q15 for PNG in 2011 was estimated as 269 per 1,000 for males and 237 per 1,000 for females with substantial inter-provincial variations in both sexes. The under-five mortality was estimated as 68 per 1,000 live births for males and 58 per 1,000 live births for females, and life expectancy was 62.0 years for males and 64.3 years for females. Provinces with a low composite index had comparatively high levels of 45q15 and 5q0, and low life expectancy for both sexes. Conversely, provinces with a higher composite index reported lower 45q15 and 5q0, and higher life expectancy. Both Infectious diseases and noncommunicable diseases (NCDs) accounted for 45% of the deaths each, with the former accounting for more than half the deaths in several provinces (e.g. Gulf and Sandaun). Provinces with higher CSMFs from emerging NCDs (e.g. ischaemic heart disease and stroke) were those in which socioeconomic status was comparatively high. Conclusion The major findings of this thesis are that adult mortality in PNG is relatively high compared with other low- and middle-income countries and that provincial variations in all-cause mortality and COD correlate with levels of development as measured by the composite index. The level of epidemiological transition is not uniform across the country with noncommunicable diseases emerging in provinces with higher levels of socioeconomic development. It is recommended that PNG urgently address the major causes of persistently high premature adult and child mortality and strengthen the collection of routine mortality and COD data through verbal autopsies to ensure the availability of reliable and timely data for policymakers to improve PNG’s population health.
Investigating people-centred mental health care in Timor-Leste
Despite the increased emphasis placed on people-centred mental health care in low- and middle-income countries (LMICs), until this study, there has been no systematic investigation of the paradigm outside Western high-income country settings. Timor-Leste, a lower middle-income country in South-East Asia, is in the process of strengthening its national mental health system to align with people-centred approaches to mental health care. This thesis critically investigates people-centred mental health care in community settings, mental health services, and the mental health system in Timor-Leste. This study aimed to enhance the understanding of the acceptability and feasibility of people-centred mental health care in Timor-Leste. The study's primary aim was to inform Timor-Leste's ongoing mental health system strengthening, and its secondary aim was to identify potential implications for the implementation of the people-centred paradigm in other LMICs. The study employed mixed-methods framed through a socio-ecological lens to understand the people-centred mental health care paradigm in Timor-Leste across multiple levels of analysis. In-depth semi-structured interviews were conducted with 85 stakeholders from different groups across national and sub-national sites. Informal observation in government and non-government mental health and social care services and a review of publicly available documents were also undertaken. A quantitative complex systems analysis was employed to measure intersectoral collaboration in the national mental health system. At the community level, the study found a family-centred ecology of mental health in which the needs, preferences and rights of individuals were subordinated to those of their family. Timorese people with mental illness experienced multi-faceted social exclusion, but also had opportunities for social inclusion. At the mental health service level, sociocultural and medical power hierarchies shaped decision making. Priorities for mental health care for families, communities, service providers, decision makers and civil society were influenced by Timor-Leste's broader development context and its lack of resources for health services. At the mental health system level, holistic understandings of health and well-being and the need to overcome resource restrictions provided opportunities for intersectoral collaboration in mental health. A split in stewardship for mental health governance between health and social sectors was detected. There was also limited participation in mental health system governance by people with mental illness, their families and communities. The study evinced that employing a socio-ecological framework allowed for a deeper consideration of Timor-Leste's sociocultural and development contexts while acknowledging the common elements in people-centred mental health care. The findings present a compelling case for the consideration of both individual and collective care and social rights in global mental health. The implementation of peoplecentred mental health care should be viewed as a staged process to account for limited resources, capacities and priorities for countries. The findings highlight the vacuum of research on the power relations inherent in the concept of people-centred mental health care, its implementation and the hierarchies of knowledge on which the paradigm is based. Accounting for local cultural knowledge and understandings will strengthen the design and implementation of people-centred mental health care in LMIC settings.
The role of health behaviours in colorectal cancer risk and screening uptake
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.
Explaining the mechanisms underlying the effect of adiposity on the risk of colorectal, postmenopausal breast, and endometrial cancer using data from four prospective cohort studies
Background Excess adiposity in adulthood is an established risk factor for several types of cancer, including colorectal, estrogen receptor (ER)-positive postmenopausal breast, and endometrial cancers. Dysregulated adipocytokine production and chronic low-grade inflammation, insulin resistance and hyperinsulinemia, and alteration in levels of sex-steroid hormones are three of the mechanisms hypothesised to explain the effect of adiposity on cancer risk. Current evidence suggests that these mechanisms are interconnected, and their relative importance is likely different for different cancers. Mediation analysis is a statistical method for quantifying how much of the effect of an exposure (adiposity) on an outcome (cancer incidence) is explained by a mediator (an intermediate mechanism). Recent methodological advances in this area allow assessment of mediation in the presence of multiple dependent mediators and are of great use in unravelling mechanisms linking adiposity to cancer risk. This thesis took advantage of these methods and data from four existing prospective studies to provide a comprehensive investigation of the role of the three putative pathways in explaining the effect of adiposity on the risk of colorectal, ER-positive postmenopausal breast, and endometrial cancers. Methods The UK Biobank cohort was used to investigate the mediating roles of measured biomarkers on inflammatory status (C-reactive protein (CRP)), insulin signalling (glycated haemoglobin), and sex steroid hormone (sex hormone binding globulin (SHBG) and testosterone) pathways in explaining the effect of adiposity on colorectal cancer risk in men and postmenopausal women. Sequential mediation analysis was used to estimate the natural indirect (NIE) and direct (NDE) effects. A case-cohort study within the Melbourne Collaborative Cohort Study (MCCS) was used to investigate the mediating roles of fasting insulin and calculated free estradiol in explaining the effect of adiposity on ER-positive postmenopausal breast cancer risk. A regression-standardisation approach was used to estimate the interventional indirect (IIE) and direct (IDE) effects. A case-control study nested within the European Prospective Investigation into Cancer and Nutrition (EPIC) was used to investigate the mediating roles of biomarkers on inflammatory status (captured by a panel of pro- and anti-inflammatory adipocytokines and cytokines), C-peptide, and estrone and calculated free estradiol in explaining the effect of adiposity on endometrial cancer risk in postmenopausal women. The NIEs and NDE were estimated using sequential mediation analysis. Finally, a case-cohort study within the Women’s Health Initiative Observational Study (WHI-OS) was used to investigate the mediating roles of biomarkers on inflammatory status (a panel of pro- and anti-inflammatory adipocytokines and cytokines), fasting insulin, and total estradiol in explaining the effect of adiposity on the risk of colorectal, ER-positive breast, and endometrial cancers in postmenopausal women. The IIEs and IDE were estimated using a regression-standardisation approach. Results The analysis of the UK Biobank data provided evidence for a small mediating role for CRP as well as for SHBG and testosterone (combined and beyond the potential influences of CRP and HbA1c on SHBG and testosterone levels), but no evidence of mediation through HbA1c in explaining the effect of adiposity on colorectal cancer risk in men. In postmenopausal women, there was evidence for a small mediating effect through CRP, but no evidence for mediation through HbA1c or SHBG and testosterone combined. For both men and women, a large part of the effect of adiposity on colorectal cancer risk remained unexplained by the biomarkers included in the analysis. In the MCCS case-cohort study of adiposity and ER-positive postmenopausal breast cancer, moderate to strong mediation was observed through free estradiol. The point estimate was also suggestive of weak mediation through fasting insulin, but there was high uncertainty around the estimated indirect effect. In the case-control study nested within the EPIC there was evidence for moderate mediation through inflammatory status. There was also a suggestion for weak mediation through C-peptide (excluding the potential influence of inflammatory status on C-peptide levels) and weak to moderate mediation through free estradiol and estrone (excluding the influences of inflammatory status and C-peptide on sex-hormone levels), but there was high uncertainty around the estimated indirect effects. In the WHI-OS case-cohort study of postmenopausal women, for colorectal cancer there was high uncertainty around the estimated mediating effects for all pathways, precluding the possibility of making a definitive judgement about presence and strength of mediation through the assessed biomarkers. For ER-positive breast cancer, a strong mediating effect was observed through fasting insulin and a weak to moderate mediation for estradiol, but there was high uncertainty around the estimated indirect effect through inflammatory status. For endometrial cancer, a moderate mediating effect through estradiol was observed, but there was high uncertainly around the estimated indirect effects for inflammatory status and fasting insulin. Conclusion This thesis offers an investigation of the mediating roles of inflammatory status, insulin resistance and hyperinsulinemia, and sex-steroid hormone pathways in explaining the effect of adiposity on the risk of colorectal cancer in men and postmenopausal women, and ER-positive breast and endometrial cancer in postmenopausal women. Findings from this research need to be replicated by studies ideally with larger sample sizes and repeated measures for adiposity and biomarkers, and as has been performed in this thesis, proper application of causal mediation analysis approaches to take the dependence between biomarkers into account.
Nutrition and oral health in the early years: Trends and influences in children aged 0-5 years
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.
What is quality of life for children with cerebral palsy? A constructivist grounded theory approach with implications for measurement
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.
Socioeconomic inequalities in health care and financial protection among people with non-communicable diseases in China
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.
Models of Indigenous community-controlled health care in Chile
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.