Elaine Maypilama

“Hiding the story”: Indigenous consumer concerns about communication related to chronic disease in one remote region of Australia*

Abstract This paper reports on a collaborative qualitative study which explored education and communication practice related to chronic disease from the perspectives of Aboriginal people in a remote region of the Northern Territory, Australia, where the prevalence of chronic disease is extremely high. Most Yolngu (Aboriginal people of Northeast Arnhem Land) do not speak English as their first language and few health staff share the language and cultural background of their clients. Semi-structured interviews were conducted with Yolngu community members and health staff in their preferred language in small groups or individually, in an approach that was flexible and responsive to the concerns and priorities of Yolngu researchers and participants. As well, health education interactions were videotaped to facilitate more in-depth understanding of the strengths and challenges in communication (one video can be viewed at http://informahealthcare.com/doi/abs/10.3109/17549507.2012.663791). An iterative and collaborative process of analysis, interpretation, and verification revealed that communication and education related to chronic disease is highly ineffective, restricting the extent to which Yolngu can make informed decisions in managing their health. Yolngu participants consistently stated that they wanted a detailed and direct explanation about causes and management of chronic disease from health staff, and rarely believed this had been provided, sometimes assuming that information about their health is deliberately withheld. These serious limitations in communication and education have extensive negative consequences for individuals, their families, and health services. These findings also have broader relevance to all areas of healthcare, including allied health services, which share similar challenges in achieving effective communication. Without addressing the profound and pervasive inadequacies in communication, other interventions designed to close the gap in Indigenous health are unlikely to succeed.

Factors Influencing Food Choice in an Australian Aboriginal Community

We explored with Aboriginal adults living in a remote Australian community the social context of food choice and factors perceived to shape food choice. An ethnographic approach of prolonged community engagement over 3 years was augmented by interviews. Our findings revealed that knowledge, health, and resources supporting food choice were considered “out of balance,” and this imbalance was seen to manifest in a Western-imposed diet lacking variety and overrelying on familiar staples. Participants felt ill-equipped to emulate the traditional pattern of knowledge transfer through passing food-related wisdom to younger generations. The traditional food system was considered key to providing the framework for learning about the contemporary food environment. Practitioners seeking to improve diet and health outcomes for this population should attend to past and present contexts of food in nutrition education, support the educative role of caregivers, address the high cost of food, and support access to traditional foods.

Integrating an ecological approach into an Aboriginal community-based chronic disease prevention program: a longitudinal process evaluation.

BackgroundPublic health promotes an ecological approach to chronic disease prevention, however, little research has been conducted to assess the integration of an ecological approach in community-based prevention programs. This study sought to contribute to the evidence base by assessing the extent to which an ecological approach was integrated into an Aboriginal community-based cardiovascular disease (CVD) and type 2 diabetes prevention program, across three-intervention years.MethodsActivity implementation forms were completed by interview with implementers and participant observation across three intervention years. A standardised ecological coding procedure was applied to assess participant recruitment settings, intervention targets, intervention strategy types, extent of ecologicalness and organisational partnering. Inter-rater reliability for two coders was assessed at Kappa = 0.76 (p < .0.001), 95% CI (0.58, 0.94).Results215 activities were implemented across three intervention years by the health program (HP) with some activities implemented in multiple years. Participants were recruited most frequently through organisational settings in years 1 and 2, and organisational and community settings in year 3. The most commonly utilised intervention targets were the individual (IND) as a direct target, and interpersonal (INT) and organisational (ORG) environments as indirect targets; policy (POL), and community (COM) were targeted least. Direct (HP→ IND) and indirect intervention strategies (i.e., HP→ INT→ IND, HP→ POL → IND) were used most often; networking strategies, which link at least two targets (i.e., HP→[ORG-ORG]→IND), were used the least. The program did not become more ecological over time.ConclusionsThe quantity of activities with IND, INT and ORG targets and the proportion of participants recruited through informal cultural networking demonstrate community commitment to prevention. Integration of an ecological approach would have been facilitated by greater inter-organisational collaboration and centralised planning. The upfront time required for community stakeholders to develop their capacity to mobilise around chronic disease is at odds with short-term funding cycles that emphasise organisational accountability.

Runs of homozygosity and a cluster of vulvar cancer in young Australian Aboriginal women

OBJECTIVE A cluster of vulvar cancer exists in young Aboriginal women living in remote communities in Arnhem Land, Australia. A genetic case-control study was undertaken involving 30 cases of invasive vulvar cancer and its precursor lesion, high-grade vulvar intraepithelial neoplasia (VIN), and 61 controls, matched for age and community of residence. It was hypothesized that this small, isolated population may exhibit increased autozygosity, implicating recessive effects as a possible mechanism for increased susceptibility to vulvar cancer. METHODS Genotyping data from saliva samples were used to identify runs of homozygosity (ROH) in order to calculate estimates of genome-wide homozygosity. RESULTS No evidence of an effect of genome-wide homozygosity on vulvar cancer and VIN in East Arnhem women was found, nor was any individual ROH found to be significantly associated with case status. This study found further evidence supporting an association between previous diagnosis of CIN and diagnosis of vulvar cancer or VIN, but found no association with any other medical history variable. CONCLUSIONS These findings do not eliminate the possibility of genetic risk factors being involved in this cancer cluster, but rather suggest that alternative analytical strategies and genetic models should be explored.

The Sociolinguistics of Alternate Sign Languages of Arnhem Land

A look at the research done so far on sign languages shows a focus on the so-called primary sign languages, i.e. sign languages that are acquired by Deaf people as their first language. There is a substantial amount of studies on sign languages around the world, e.g. AUSLAN in Australia, Deutsche Gebardensprache (DGS) (German Sign Language) in Germany, and American Sign Language in the States. More recently we note a diversification in sign language research, with an increase in sign languages other than the ones found in Western countries. We have studies on Jamaican Sign Language (Cumberbatch 2012), Mauritian Sign Language, (Gebert and Adone 2006, Adone 2012), Bhan Khor Sign Language (Nonaka 2012), Kata Kolok (de Vos 2012), Desa Kolok (Marsaja, 2015) among others. In spite of some effort to diversify the field, still very little is known on alternate sign languages. As these sign languages are underrepresented and under-documented in the field, we aim at providing some insights into these languages. This paper is organized as follows. In section two we attempt at distinguishing the various types of sign languages. In section three we give an overview of the sign languages in Arnhem Land as reported in the past and present. Section four describes the sociolinguistic contexts in which these alternate sign languages are used. Section five discusses some linguistic features shared by these alternate systems. Section six provides a brief conclusion and some thoughts for future research.