Anne Lowell

“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.

Communication and Learning in an Aboriginal School: The Influence of Conductive Hearing Loss

Otitis media (middle ear infection) is one of the most common childhood diseases all over the world and is very prevalent in many indigenous populations including Australian Aborigines. When children have otitis media they often have a hearing loss that can range from slight to moderately severe. This hearing loss is often hard to identify and can come and go. The problem often starts in infancy and can continue for years; hearing returns to normal in some children but some have permanent hearing loss. Even a mild hearing loss in early childhood can seriously affect communication development and learning. This can make it very difficult for children to succeed in the classroom — even when they no longer have active otitis media or hearing loss.

Supporting aboriginal knowledge and practice in health care: lessons from a qualitative evaluation of the strong women, strong babies, strong culture program

BackgroundThe Strong Women, Strong Babies, Strong Culture Program (the Program) evolved from a recognition of the value of Aboriginal knowledge and practice in promoting maternal and child health (MCH) in remote communities of the Northern Territory (NT) of Australia. Commencing in 1993 it continues to operate today. In 2008, the NT Department of Health commissioned an evaluation to identify enabling factors and barriers to successful implementation of the Program, and to identify potential pathways for future development. In this paper we focus on the evaluation findings related specifically to the role of Aborignal cultural knowledge and practice within the Program.MethodsA qualitative evaluation utilised purposive sampling to maximise diversity in program history and Aboriginal culture. Semi-structured, in-depth interviews with 76 participants were recorded in their preferred language with a registered Interpreter when required. Thematic analysis of data was verified or modified through further discussions with participants and members of the evaluation team.ResultsAlthough the importance of Aboriginal knowledge and practice as a fundamental component of the Program is widely acknowledged, there has been considerable variation across time and location in the extent to which these cultural dimensions have been included in practice. Factors contributing to this variation are complex and relate to a number of broad themes including: location of control over Program activities; recognition and respect for Aboriginal knowledge and practice as a legitimate component of health care; working in partnership; communication within and beyond the Program; access to transport and working space; and governance and organisational support.ConclusionsWe suggest that inclusion of Aboriginal knowledge and practice as a fundamental component of the Program is key to its survival over more than twenty years despite serious challenges. Respect for the legitimacy of Aboriginal knowledge and practice within health care, a high level of community participation and control supported through effective governance and sufficient organisational commitment as well as competence in intercultural collaborative practice of health staff are critical requirements for realising the potential for cultural knowledge and practice to improve Aboriginal health outcomes.

“From your own thinking you can't help us”: Intercultural collaboration to address inequities in services for Indigenous Australians in response to the World Report on Disability

Abstract Inequity in service provision for Indigenous Australians with communication disability is an issue requiring urgent attention. In the lead article, 21 note that, even in the relatively affluent Minority World, including Australia, equity in service provision for people with communication disability has not been achieved. In remote communities in the Northern Territory (NT) almost all residents speak a language other than English as their primary language. However, there are no speech-language pathologists (SLPs) in the NT who speak an Indigenous language or who share their cultural background. Specific data on the prevalence of communication disability in this population are unavailable due to a range of factors. The disability data that are available, for example, demonstrating the high level of conductive hearing loss, indicates that the risk of communication disability in this population is particularly high. Change is urgently needed to address current inequities in both availability of, and access to, culturally responsive services for Indigenous people with communication disability. Such change must engage Indigenous people in a collaborative process that recognizes their expertise in identifying both their needs and the most effective form of response to these needs.

TRIAL OF A DEVELOPMENTAL SCREENING TOOL

We were interested in determining the priorities of paediatric researchers, particularly in the Australian context. While most clinicians are adept at visualising quantitative data, textual data are less frequently explored in a visual manner. We used a word cloud to perform a visual analysis of this topic. Word clouds are pictures created from words, where the frequency with which a word appears in the submitted text is reflected in the prominence with which a word is displayed. The more frequent a word appears in the text, the larger it appears in the word cloud. The advantage of this form of visualisation is that it is easy to spot the most commonly occurring words and their relative frequency compared to others. On the other hand, it is difficult to make accurate estimates of those frequencies. Using PubMed, we retrieved the title of every article published by the Journal of Paediatrics and Child Health from February 1990 to 1 March 2011. These article titles were then entered into an online word cloud generator, and a word cloud was created in a similar manner to a previous analysis. Prepositions like ‘for’, ‘or’ and ‘in’ were excluded from the word cloud. As Figure 1 demonstrates, the most striking feature of the word cloud is the dominance of the word ‘children’, which is not surprising, but very reassuring. It indicates that the paediatric research community, which publishes in the journal, are strongly focussed on children. Age subgroups of children appear prominently as well as general descriptors such as study location, syndrome and disease descriptors. Few specific disease terms (with the exception of infection and asthma) are easily recognisable, and study types such as randomised trials do not appear strongly. This word cloud provides an alternative technique for visualising topics considered important by Australasian paediatric researchers. This method relies on articles using explicit titles and so may not truly reflect the content of the articles; however, it does clearly indicate that the Journal of Paediatrics and Child Health remains squarely focussed on Australian children. Acknowledgements: Richard McGee is a recipient of a postgraduate research scholarship from the National Health and Medical Research Council, Australia.

Building Yolŋu Skills, Knowledge, and Priorities into Early Childhood Assessment and Support: Protocol for a Qualitative Study

Background Yolngu or Yolŋu are a group of indigenous Australian people inhabiting north-eastern Arnhem Land in the Northern Territory of Australia. Recent government policy addressing disparities in outcomes between Indigenous and other children in Australia has resulted in the rapid introduction of early childhood interventions in remote Aboriginal communities. This is despite minimal research into their appropriateness or effectiveness for these contexts. Objective This research aims to privilege Aboriginal early childhood knowledge, priorities and practices and to strengthen the evidence base for culturally responsive and relevant assessment processes and support that distinguishes “difference” from “deficit” to facilitate optimal child development. Methods This collaborative qualitative research employs video ethnography, participant observation and in-depth interviews, involving Aboriginal families and researchers in design, implementation, interpretation and dissemination using a locally developed, culturally responsive research approach. Longitudinal case studies are being conducted with 6 families over 5 years and emerging findings are being explored with a further 50 families and key community informants. Data from all sources are analyzed inductively using a collaborative and iterative process. The study findings, grounded in an in-depth understanding of the cultural context of the study but with relevance to policy and practice more widely, are informing the development of a Web-based educational resource and targeted knowledge exchange activities. Results This paper focuses only on the research approach used in this project. The findings will be reported in detail in future publications. In response to community concerns about lack of recognition of Aboriginal early childhood strengths, priorities and knowledge, this collaborative community-driven project strengthens the evidence base for developing culturally responsive and relevant early childhood services and assessment processes to support optimal child development. The study findings are guiding the development of a Web-based educational resource for staff working with Aboriginal communities and families in the field of early child development. This website will also function as a community-developed tool for strengthening and maintaining Aboriginal knowledge and practice related to child development and child rearing. It will be widely accessible to community members through a range of platforms (eg, mobile phones and tablets) and will provide a model for other cultural contexts. Conclusions This project will facilitate wider recognition and reflection of cultural knowledge and practice in early childhood programs and policies and will support strengthening and maintenance of cultural knowledge. The culturally responsive and highly collaborative approach to community-based research on which this project is based will also inform future research through sharing knowledge about the research process as well as research findings.

Secondary analysis of data can inform care delivery for Indigenous women in an acute mental health inpatient unit

There is a paucity of research exploring Indigenous womens experiences in acute mental health inpatient services in Australia. Even less is known of Indigenous womens experience of seclusion events, as published data are rarely disaggregated by both indigeneity and gender. This research used secondary analysis of pre-existing datasets to identify any quantifiable difference in recorded experience between Indigenous and non-Indigenous women, and between Indigenous women and Indigenous men in an acute mental health inpatient unit. Standard separation data of age, length of stay, legal status, and discharge diagnosis were analysed, as were seclusion register data of age, seclusion grounds, and number of seclusion events. Descriptive statistics were used to summarize the data, and where warranted, inferential statistical methods used SPSS software to apply analysis of variance/multivariate analysis of variance testing. The results showed evidence that secondary analysis of existing datasets can provide a rich source of information to describe the experience of target groups, and to guide service planning and delivery of individualized, culturally-secure mental health care at a local level. The results are discussed, service and policy development implications are explored, and suggestions for further research are offered.

Low uptake of Aboriginal interpreters in healthcare: Exploration of current use in Australia's Northern Territory

BackgroundIn Australia’s Northern Territory, most Aboriginal people primarily speak an Aboriginal language. Poor communication between healthcare providers and Aboriginal people results in adverse outcomes including death. This study aimed to identify remediable barriers to utilisation of Aboriginal Interpreter services at the Northern Territory’s tertiary hospital, which currently manages over 25,000 Aboriginal inpatients annually.MethodsThis is a multi-method study using key stakeholder discussions, medical file audit, bookings data from the Aboriginal Interpreter Service 2000–2015 and an online cross-sectional staff survey. The Donabedian framework was used to categorise findings into structure, process and outcome.ResultsSix key stakeholder meetings each with approximately 15 participants were conducted. A key structural barrier identified was lack of onsite interpreters. Interpreter bookings data revealed that only 7603 requests were made during the 15-year period, with completion of requests decreasing from 337/362 (93.1%) in 2003–4 to 649/831 (78.1%) in 2014–15 (p < 0.001). Non-completion was more common for minority languages (p < 0.001). Medical files of 103 Aboriginal inpatients were audited. Language was documented for 13/103 (12.6%). Up to 60/103 (58.3%) spoke an Aboriginal language primarily. Of 422 staff who participated in the survey, 18.0% had not received ‘cultural competency’ training; of those who did, 58/222 (26.2%) indicated it was insufficient. The Aboriginal Interpreter Service effectiveness was reported to be good by 209/368 (56.8%), but only 101/367 (27.5%) found it timely. Key process barriers identified by staff included booking complexities, time constraints, inadequate delivery of tools and training, and greater convenience of unofficial interpreters.ConclusionWe identified multiple structural and process barriers resulting in the outcomes of poor language documentation and low rates of interpreter bookings. Findings are now informing interventions to improve communication.