Cancer and Aboriginal people in Australia: A review of the literature

This paper provides a thematic review of the literature on cancer in Aboriginal people in Australia, focusing on experiences in diagnosis, treatment and care as well as addressing sociocultural factors to guide the public health response to poorer treatment outcomes. A search of both medical and social scientific databases for journal articles published between 1995 and 2006 show that cancer incidence and possibly survival and mortality data are likely to be underestimated in Aboriginal people. Aboriginal people are more likely to die from cancer than non-Aboriginal Australians. There are significant differences between the cancer experiences of those living in the city and in rural or remote areas. There is also a relative absence of literature on cancer in Aboriginal men, who are likely to have particular needs during diagnosis, treatment and care. In drawing conclusions from these data, it can be seen that Aboriginal people with cancer have poorer outcomes than non-Aboriginal Australians, and there is a need for further research in the patterns of care and predictors of outcomes in Aboriginal men and women with cancer. Particular attention should be given to the different needs and experiences of Aboriginal people in urban or rural/remote areas. These findings indicate an urgent need to allocate additional resources to the treatment and care of Aboriginal people with cancer, in addition to screening interventions. There is also a continuing need to acknowledge cultural differences in the health beliefs of Aboriginal people and to work in partnership with Aboriginal community controlled health organisations.     

Can arts projects improve young people’s wellbeing? A social capital approach

Community arts projects are widely believed to have positive impacts on health, wellbeing and social inclusion. Such beliefs underpinned the UK Government-funded SingUp programme for children. Drawing on data from participant observation, extended interviews, focus groups and a questionnaire survey, we examine the experiences of children in three SingUp choirs. We focus specifically on social and emotional wellbeing as they relate to social capital: this being one of the key pathways through which arts participation is thought to impact on health and wellbeing more widely. For many (particularly girls from relatively privileged backgrounds), the experience has been largely positive, providing opportunities to develop social capital, make new friends and build confidence. However, others’ experiences have been more equivocal, entailing risks of disconnection from existing networks of friends. We argue that, while arts projects can impact positively on young people’s social and emotional wellbeing, we cannot assume that the changes will be unequivocally good or straightforward. We follow Bourdieu and other critical theorists in arguing that social capital operates in association with economic and cultural capital, and cannot be understood in isolation from the wider constraints of people’s lives.     

Measuring emotional and social wellbeing in Aboriginal and Torres Strait Islander populations: an analysis of a Negative Life Events Scale

Aboriginal and Torres Strait Islander Australians experience widespread socioeconomic disadvantage and health inequality. In an attempt to make Indigenous health research more culturally-appropriate, Aboriginal and Torres Strait Islander Australians have called for more attention to the concept of emotional and social wellbeing (ESWB). Although it has been widely recognised that ESWB is of crucial importance to the health of Aboriginal and Torres Strait Islander peoples, there is little consensus on how to measure in Indigenous populations, hampering efforts to better understand and improve the psychosocial determinants of health. This paper explores the policy and political context to this situation, and suggests ways to move forward. The second part of the paper explores how scales can be evaluated in a health research setting, including assessments of endorsement, discrimination, internal and external reliability.     

‘Faking til you make it’: Social capital accumulation of individuals on low incomes living in contrasting socio-economic neighbourhoods and its implications for health and wellbeing

People on low-income living in low socio-economic neighbourhoods have poorer health in comparison with those living in advantaged neighbourhoods. To explore neighbourhood effects on health and social capital creation, the experiences of low-income people living in contrasting socio-economic neighbourhoods were compared, in order to examine how low-income status and differing levels of neighbourhood resources contributed to perceived health and wellbeing. Quantitative and qualitative data were analysed: survey data from 601 individuals living in contrasting socio-economic areas and in-depth interviews with a new sample of 24 individuals on low-incomes. The study was guided by Bourdieu's theory of practice, which examines how social inequalities are created and reproduced through the relationship between individuals' varying resources of economic, social and cultural capital. This included an examination of individual life histories, cultural distinction and how social positions are reproduced. Participants' accounts of their early life experience showed how parental socio-economic position and socially patterned events taking place across the life course, created different opportunities for social network creation, choice of neighbourhood and levels of resources available throughout life, all of which can influence health and wellbeing. A definition of poverty by whether an individual or household has sufficient income at a particular point in time was an inadequate measure of disadvantage. This static measure of ‘low income’ as a category disguised a number of different ways in which disadvantage was experienced or, conversely, how life course events could mitigate the impact of low-income. This study found that the resources necessary to create social capital such as cultural capital and the ability to socially network, differed according to the socio-economic status of the neighbourhood, and that living in an advantaged area does not automatically guarantee access to potentially beneficial social networks.     

Social relations or social capital? Individual and community health effects of bonding social capital

Social capital has become one of the most popular topics in public health research in recent years. However, even after a decade of conceptual and empirical work on this subject, there is still considerable disagreement about whether bonding social capital is a collective resource that benefits communities or societies, or whether its health benefits are associated with people, their personal networks and support. Using data from the 2000 and 2002 Health Survey for England this study found that, in line with earlier research, personal levels of social support contribute to a better self-reported health status. The study also suggests that social capital is additionally important for people's health. In both datasets the aggregate social trust variable was significantly related to self-rated health before and after controlling for differences in socio-demographics and/or individual levels of social support. The results were corroborated in the second dataset with an alternative indicator of social capital. These results show that bonding social capital collectively contributes to people's self-rated health over and above the beneficial effects of personal social networks and support.     

Social capital and health in rural and urban communities in South Australia

Objective : This paper seeks to compare the relationships between social capital and health for rural and urban residents of South Australia.
Methods : Using data from a South Australian telephone survey of 2,013 respondents (1,402 urban and 611 rural), separate path analyses for the rural and urban samples were used to compare the relationships between six social capital measures, six demographic variables, and mental and physical health (measured by the SF-12).
Results : Higher levels of networks, civic participation and cohesion were reported in rural areas. Education and income were consistently linked with social capital variables for both rural and urban participants, with those on higher incomes and with higher educational achievement having higher levels of social capital. However, there were also differences between the rural and urban groups in some of the other predictors of social capital variables. Mental health was better among rural participants, but there was no significant difference for physical health. Social capital was associated with good mental health for both urban and rural participants, but with physical health only for urban participants. Higher levels of social capital were significantly associated with better mental health for both urban and rural participants, but with better physical health only for urban participants.
Conclusions and implications : The study found that social capital and its relationship to health differed for participants in rural and urban areas, and that there were also differences between the areas in associations with socioeconomic variables. Policies aiming to strengthen social capital in order to promote health need to be designed for specific settings and particular communities within these.     

The Study of Environment on Aboriginal Resilience and Child Health (SEARCH): study protocol

Background  

Aboriginal Australians have a life expectancy more than ten years less than that of non-Aboriginal Australians, reflecting their disproportionate burden of both communicable and non-communicable disease throughout the lifespan. Little is known about the health and health trajectories of Aboriginal children and, although the majority of Aboriginal people live in urban areas, data are particularly sparse in relation to children living in urban areas.     

Health literacy in relation to cancer: addressing the silence about and absence of cancer discussion among Aboriginal people,communities and health services

Cancer outcomes for Aboriginal Australians are poorer when compared with cancer outcomes for non‐Aboriginal Australians despite overall improvements in cancer outcomes. One concept used to examine inequities in health outcomes between groups is health literacy. Recent research and advocacy have pointed to the importance of increasing health literacy as it relates to cancer among Aboriginal people. This study examined individual, social and cultural aspects of health literacy relevant to cancer among Aboriginal patients, carers and their health workers in New South Wales. Qualitative interviews were conducted with 22 Aboriginal people who had been diagnosed with cancer, 18 people who were carers of Aboriginal people with cancer and 16 healthcare workers (eight Aboriginal and eight non‐Aboriginal health workers). Awareness, knowledge and experience of cancer were largely absent from people's lives and experiences until they were diagnosed, illustrating the need for cancer awareness raising among Aboriginal people, communities and services. Some beliefs about cancer (particularly equating cancer to death) differed from mainstream Western biomedical views of the body and cancer and this served to silence discussion on cancer. As such, these beliefs can be used to inform communication and help illuminate how beliefs can shape responses to cancer. Participants proposed some practical strategies that could work to fill absences in knowledge and build on beliefs about cancer. These results were characterised by a silence about cancer, an absence of discussions of cancer and an acknowledgement of an already full health agenda for Aboriginal communities. To promote health literacy in relation to cancer would require a multi‐layered programme of work involving grass‐roots community education, workers and Board members of Aboriginal community‐controlled health organisations and speciality cancer services, with a particular focus on programmes to bridge community‐based primary care and tertiary level cancer services.     

Factors relating to high psychological distress in Indigenous Australians and their contribution to Indigenous–non‐Indigenous disparities

Objective: To explore factors associated with high psychological distress among Aboriginal and non‐Aboriginal Australians and their contribution to the elevated distress prevalence among Aboriginal people. Methods: Questionnaire data from 1,631 Aboriginal and 233,405 non‐Aboriginal 45 and Up Study (NSW, Australia) participants aged ≥45 years were used to calculate adjusted prevalence ratios for high psychological distress (Kessler‐10 score ≥22) for socio‐demographic, health and disability‐related factors, and to quantify contributions to differences in distress prevalence. Results: While high‐distress prevalence was increased around three‐fold in Aboriginal versus non‐Aboriginal participants, distress‐related risk factors were similar. Morbidity and physical disability had the strongest associations; high distress affected 43.8% of Aboriginal and 20.9% of non‐Aboriginal participants with severe physical limitations and 9.5% and 3.9% of those without limitations, respectively. Differences in distress prevalence between Aboriginal and non‐Aboriginal participants were essentially attributable to differences in SES, morbidity, disability/functional limitations and social support (fully‐adjusted PR 1.19 [95% 1.08, 1.30]); physical morbidity and disability explained the bulk. Conclusions: The markedly elevated prevalence of high distress among older Aboriginal Australians appears largely attributable to greater physical morbidity and disability. Implications for public health: Addressing upstream determinants of physical morbidity and improved integration of social and emotional wellbeing care into primary care and chronic disease management are essential.     

Reducing racism in Aboriginal health care in Australia: where does cultural education fit?

Objective : This paper discusses whether educating health professionals and undergraduate students in culturally respectful health service delivery is effective in reducing racism, improving practice and lessening the disparities in health care between Aboriginal and non‐Aboriginal Australians. Approach : The paper supports the concept of race as a social construction that is discursively produced and reproduced. Studies on the effectiveness of cross‐cultural education for undergraduate students and health professionals to reduce racism and deliver culturally respectful health care to indigenous or minority populations are examined for evidence of sustained improvements to practice. Conclusion : Programs in culturally respectful health care delivery can lead to short‐term improvements to practice. Sustained change is more elusive as few programs conducted long‐term evaluations. Long‐term evaluation of programs in culturally respectful health care delivery is necessary to identify whether early changes to behavior and practices are sustained. Strategies linking policies to practice to reduce health disparities between Aboriginal and non‐Aboriginal Australians are also needed. Implications : Confronting the effects of racism in health services towards Aboriginal Australians is a priority requiring a multi‐tiered commitment to strategies linking policy to practice to reduce health disparities between Aboriginal and non‐Aboriginal Australians. Part of this strategy includes preparing undergraduates and health professionals for culturally respectful health care with education programs that are evaluated for long‐term improvements to practice.     

Parents' and carers' views on factors contributing to the health and wellbeing of urban Aboriginal children

Objective : To identify and describe caregiver perspectives on factors important for the health and wellbeing of urban Aboriginal children. Methods : Caregivers of Aboriginal children participating in the Study of Environment on Aboriginal Resilience and Child Health (SEARCH) were asked to describe the single most important factor that would help their children to be healthy and well. Responses were analysed using thematic and content analysis. Results : Of the 626 carers in SEARCH, 425 (68%) provided a response. We identified 13 factors related to: loving family relationships, culturally competent healthcare, food security, active living, community services, education, social and emotional connectedness, safety, breaking cycles of disadvantage, housing availability and affordability, positive Aboriginal role models, strong culture, and carer wellbeing. Conclusions : Aligning with holistic concepts of health, caregivers believe that a broad range of child, family and environmental‐level factors are needed to ensure the health and wellbeing of Aboriginal children. Implications for public health : This study highlights the importance of providing public health initiatives that enable equal access to the social determinants of health for carers of Aboriginal children. Affordable and adequate housing, food security, culturally appropriate healthcare, and family and community connectedness remain critical areas for targeted initiatives.     

Responding to racism: insights on how racism can damage health from an urban study of Australian Aboriginal people

This paper examines responses to racism and the pathways through which racism can affect health and wellbeing for Aboriginal people living in an urban environment. Face-to-face interviews were conducted in 2006/07 with 153 Aboriginal people living in Adelaide, Australia. Participants were asked about their experience of, and responses to, racism, and the impact of these experiences on their health. Racism was regularly experienced by 93% of participants. Almost two thirds of people felt that racism affected their health. Using a thematic analysis with a particular focus on how agency and structure interacted, a number of key reactions and responses to racism were identified. These included: emotional and physiological reactions; and responses such as gaining support from social networks; confronting the person/situation; ignoring it; avoiding situations where they might experience racism; 'minimising' the significance or severity of racism or questioning whether incidents were racist; and consuming alcohol, tobacco and other drugs. A further theme was a conscious decision to not 'allow' racism to affect health. Our study found that most people used more than one of these coping strategies, and that strategies were selected with an awareness of positive and negative health impacts. While individuals demonstrated substantial agency in their responses, there were clear structural constraints on how they reacted and responded. We found that not only was racism potentially detrimental to health, but so too were some responses. However, while some strategies appeared 'healthier' than others, most strategies entailed costs and benefits, and these depended on the meanings of responses for individuals. This paper concludes that initiatives to promote health-protective responses to racism need to consider structural constraints and the overarching goal of reducing systemic racism.     

Social determinants and inequalities in urban health

Social and environmental factors are health determinants, in association with behavior, biological factors, and health services. Whereas socioeconomic characteristics (age, gender, ethnicity, social status) describe individuals, social determinants work through broader policies that are influenced by governments. The relation between health and four social areas is discussed. Social capital, measured as social networks and social support, appears to be protective in developing some heart disease and mental illnesses; job control at work is also found to protect against heart disease; early life experiences affect both biological and social development; and the degree of income inequality within societies correlates with health status. The Independent Report on Inequalities in Health, published in the United Kingdom in 1998, is also reviewed. The report (a) briefly describes inequalities in health by social class, sex, and ethnicity; (b) reviews the literature on policy areas that affect health; (c) includes a section indicating relatively little inequality of access or provision in the National Health Service; and (d) makes 132 recommendations. Social determinants is a new area of research having the potential to link epidemiology and environmental sciences at small area level.     

A systematic review of the evidence that swimming pools improve health and wellbeing in remote Aboriginal communities in Australia

Objective : To provide an overview of the evidence for health and wellbeing benefits associated with swimming pools in remote Aboriginal* communities in Australia. Methods : Peer‐reviewed and grey literature from 1990 to 2014 was searched to identify studies set in remote Australia that evaluated health and wellbeing benefits that have been associated with swimming pools. Studies were categorised using an evidence classification scale. Results : Twelve studies met our search criteria. All prospective studies that collected data on skin infections found access to swimming pools to be associated with a drop of skin sore prevalence and ‐where measured‐ severity. Studies documenting ear and eye infections showed mixed outcomes. Many wider community and wellbeing benefits were documented in various studies, although many of these were primarily anecdotal in nature. Conclusions : Although a case can be made regarding skin infections and the broader wellbeing benefits that swimming pools may bring to remote Aboriginal communities, the benefit to ear and eye health remains unresolved. Implications : The decision to provide swimming pools to remote Aboriginal communities should not hinge on the demonstration of direct health benefits alone. Equity considerations and the potential broader benefits such amenities may entail are equally important.     

Social Capital and Resilience: A Review of Concepts and Selected Literature Relevant to Aboriginal Youth Resilience Research

Social capital, as an asset or a resource for resilience, can be a characteristic of the community or the individual. As an individual asset, social capital consists of a person's relationships to available social resources. As a characteristic of communities, it consists of attributes such as trust, reciprocity, collective action, and participation. Closely related to community social capital is the concept of collective efficacy. Some social networks, however, can be violent, repressive, bigoted, or otherwise destructive.Resilience is also a characteristic of both individuals and communities. This means that the relationship between social capital and resilience is four-dimensional. In discussing each of these dimensions, we highlight the ability of resilience research to link evidence on community social capital with individual data and the recognition that individuals can be resilient even if the communities they live in have low or even negative social capital.Recommendations for future research include greater attention to the social capital potential of Aboriginal spirituality, more comparison of urban-rural differences in social capital, and a better understanding of the factors that underlie Aboriginal youth resilience where social capital is defective.     

Experiences and needs of carers of Aboriginal children with a disability: a qualitative study

Background

Australian parents/carers of a person with a disability experience higher rates of depression, more financial stress, and are twice as likely to be in poor physical health than the general population. Aboriginal and Torres Strait Islander peoples experience worse health, social and economic outcomes than other Australians, and those with a disability face ‘double disadvantage’. This study aimed to better understand the experiences and needs of parents/carers/families of Aboriginal children with a disability.

Methods

Semi-structured in-depth interviews were conducted with parents or primary carers of Aboriginal children aged zero-eight with disability. Interviews were analysed using thematic analysis.

Results

Nineteen women (sixteen mothers and three grandmothers) were interviewed. More than half were lone carers (without a partner or spouse). Participants described their experiences, including challenges and facilitators, to providing and accessing care, impacts on their health and wellbeing, and associated economic and non-economic costs of caregiving. Financial strain and social isolation was particularly prominent for lone carers.

Conclusions

Tailoring services to the needs of carers of Aboriginal children with a disability means supporting kinship caregiving, facilitating engagement with other Aboriginal families, and streamlining services and systems to mitigate costs. The experiences described by our participants depict an intersection of race, socio-economic status, gender, disability, and caregiving. Services and funding initiatives should incorporate such intersecting determinants in planning and delivery of holistic care.

     

Religious social capital: its measurement and utility in the study of the social determinants of health

As a social determinant of health, religiosity remains not well understood, despite the prevalence of religious activity and prominence of religious institutions in most societies. This paper introduces a working measure of Religious Social Capital and presents preliminary associations with neighborhood social capital and urban stressors. Religious social capital is defined as the social resources available to individuals and groups through their social connections with a religious community. Domains covered include group membership, social integration, values/norms, bonding/bridging trust as well as social support. Cross-sectional data come from a convenience sample of 104 community dwelling adults residing in a single urban neighborhood in a large US city, who also provided information on neighborhood social capital, and experiences of urban stressors. Results suggest that religious social capital is a valid construct that can be reliably measured. All indicators of religious social capital were higher among those who frequently attended religious services, with the exception of bridging trust (trust of people from different religious groups). A weak, inverse, association was also observed between religious and neighborhood social capital levels. Levels of religious social capital were correlated with higher levels of reported urban stressors, while neighborhood social capital was correlated with lower urban stressor levels. A significant percent of the sample was unaffiliated with a religious tradition and these individuals were more likely to be male, young and more highly educated. Social capital is a promising construct to help elucidate the influence of religion on population health.     

Poor people, poor places, and poor health: the mediating role of social networks and social capital

This paper explores the dynamics between poverty and exclusion; neighbourhood, and health and well being by considering the role of social networks and social capital in the social processes involved. It is based on qualitative research taking two deprived areas as exemplary case studies, and involving depth interviews with residents. Neighbourhood influences on networks and social capital were explored, network typologies developed reflecting structural and cultural aspects of individual's networks, and pathways implicated in health effects considered. The complexity of social capital is addressed. The role of three factors in influencing social networks and social capital are demonstrated: neighbourhood characteristics and perceptions; poverty and social exclusion, and social consciousness. Perceptions of inequality could be a source of social capital as well as demoralisation. Different network structures-dense and weak, homogeneous and heterogeneous- were involved in the creation of social capital and had implications for well being. Coping, enjoyment of life and hope are identified as benefits. Although participation in organisations was confirmed as beneficial, it is suggested that today's heterogeneous neighbourhoods also require regenerated local work opportunities to develop bridging ties necessary for the genesis of inclusive social capital and better health. Despite the capacity of social capital to buffer its harsher effects, the concept is not wholly adequate for explaining the deleterious effects of poverty on health and well being.