Jenny Kelly

Australian Aboriginal and Torres Strait Islander communities and the development of pandemic influenza containment strategies: Community voices and community control

OBJECTIVES To develop culturally appropriate and effective strategies to reduce the risk from pandemic influenza (H1N109) in rural and remote Australian Aboriginal and Torres Strait Islander communities. METHODS Participatory Action Research (PAR) approach that enabled communities and researchers to work together to develop understanding and take action to reduce risk. RESULTS The H1N109 pandemic raised deep concerns and serious issues in all of the Aboriginal and Torres Strait Islander communities involved in this project. The participants expressed distrust and scepticism in relation to current Australian health policies on containment and told the researchers that specific plans for Aboriginal and Torres Strait Islander peoples were needed. Respondents indicated that policies and plans had been developed without respectful engagement with communities. The strong and recurring themes that emerged from the PAR cycles were: the importance of family; ways of life and realities of living in response to influenza; and key messages to government and health services to focus on communication, understanding and respect. CONCLUSION The essential work of reducing risk of pandemic influenza with Aboriginal and Torres Strait Islander communities is not straightforward, but this project has highlighted a number of useful pathways to continue to journey along with communities. A number of strategies to reduce the spread of pandemic influenza in Aboriginal and Torres Strait Islander communities were identified. These strategies would make a good starting point for conversations with communities and health services. In Aboriginal and Torres Strait Islander communities the environment, community structures and traditions vary. Respectful engagement with communities is needed to develop effective policy.

Makes you proud to be black eh?: Reflections on meaningful Indigenous research participation

IntroductionThis article outlines the meaningful participation of eight Aboriginal and Torres Strait Islander community members employed as community researchers investigating the impact of pandemic influenza in rural and remote Indigenous communities in Australia. Aboriginal and Torres Strait Islander participation is now a requirement of health research involving Aboriginal and Torres Strait Islander communities. There is a growing literature on the different approaches to such involvement. Fundamental to this literature is an acknowledgement that Indigenous communities are no longer prepared to be research objects for external, mostly non-Indigenous researchers, and demand a role in decisions about what is researched and how it will be researched. In this paper, we describe the protracted process for site identification and recruitment and training of community researchers. We focus on the backgrounds of the Indigenous researchers and their motivations for involvement, and the strengths and challenges posed by Indigenous people researching in their own communities. Throughout the paper our concern is to document how genuine participation and the building of research capacity can occur.DiscussionA key feature of the research was the employment, training and strengthening the capacity of local Aboriginal and Torres Strait Islander community members in the role of community researchers. A series of training workshops were conducted in northern Australia and focussed on qualitative research methods, including data collection, data analysis and writing. The Indigenous researchers collected the community-based data, and worked in partnership with experienced academic researchers in the analysis and compilation of community reports. Parts of those community reports, as well as additional information supplied by the community researchers, forms the basis of this article. As the demand increases for involvement of Indigenous community members as researchers, focus needs to be paid to what constitutes meaningful participation. If active participation in all aspects of the research process is intended, this necessitates close attention to the knowledge and skills required for this to occur at every stage. Building research capacity means not simply equipping local people to undertake research on a particular project, but to have the knowledge and skills to undertake research in other areas.ConclusionsThere are considerable benefits for Indigenous people researching in their own communities. Most important for the community researchers on this project was the sense that they were doing important health work, not just conducting research. Given the persistent gaps between Indigenous and non-Indigenous health, this is perhaps one of the most important contributions of this type of research. Whilst research outcomes are undoubtedly important, in many cases the process used is of greater importance.

Management of the slowly emerging zoonosis, Hendra virus, by private veterinarians in Queensland, Australia: a qualitative study

BackgroundVeterinary infection control for the management of Hendra virus (HeV), an emerging zoonosis in Australia, remained suboptimal until 2010 despite 71.4% (5/7) of humans infected with HeV being veterinary personnel or assisting a veterinarian, three of whom died before 2009. The aim of this study was to identify the perceived barriers to veterinary infection control and HeV management in private veterinary practice in Queensland, where the majority of HeV outbreaks have occurred in Australia.ResultsMost participants agreed that a number of key factors had contributed to the slow uptake of adequate infection control measures for the management of HeV amongst private veterinarians: a work culture characterised by suboptimal infection control standards and misconceptions about zoonotic risks; a lack of leadership and support from government authorities; the difficulties of managing biosecurity and public health issues from a private workforce perspective; and the slow pattern of emergence of HeV. By 2010, some infection control and HeV management changes had been implemented. Participants interviewed agreed that further improvements remained necessary; but also cautioned that this was a complex process which would require time.ConclusionPrivate veterinarians and government authorities prior to 2009 were unprepared to handle new slowly emerging zoonoses, which may explain their mismanagement of HeV. Slowly emerging zoonoses may be of low public health significance but of high significance for specialised groups such as veterinarians. Private veterinarians, who are expected to fulfil an active biosecurity and public health role in the frontline management of such emerging zoonoses, need government agencies to better recognise their contribution, to consult with the veterinary profession when devising guidelines for the management of zoonoses and to provide them with greater leadership and support. We propose that specific infection control guidelines for the management of slowly emerging zoonoses in private veterinary settings need to be developed.

Remote chemotherapy supervision model for rural cancer care: perspectives of health professionals

Townsville Cancer Centre (TCC), a tertiary cancer centre in North Queensland, Australia, provides chemotherapy services to surrounding small rural towns using the Queensland Remote Chemotherapy Supervision model (QReCS). Under this model, selected chemotherapy regimens are administered in rural hospitals by rural based generalist doctors and nurses, under the supervision of TCC-based medical oncologists and chemotherapy competent nurses through videoconferencing. We sought to explore the perspectives of health professionals participating in QReCS. This qualitative study used semi-structured interviews with 19 participants, including nine nurses, eight doctors, one rural pharmacist and one administration officer. The interviews were recorded and transcribed. Transcripts were examined using iterative thematic analysis. Four major themes were identified from the data: (1) benefits of the model, (2) enablers of implementation, (3) operational requirements for optimal functioning and (4) disadvantages of the model. The reported benefits of the model were patient convenience, inter-professional communication across health district borders, expanded scope of practice, continuity of care and maintenance of patient safety and compliance with guidelines while delivering chemotherapy. Further improvements in the quality of training for rural nurses, coordination between urban and rural sites and between health professionals and documentation of clinical encounters would optimise the operation of the model. QReCS appears to provide many benefits to patients and health professionals and a framework for safe administration of chemotherapy in rural areas. Coordination of care, the quality of training for rural nurses as well as clinical documentation needs to improve to optimise the operation of the model.

‘She knows how we feel’: Australian Aboriginal and Torres Strait Islander childbearing women's experience of Continuity of Care with an Australian Aboriginal and Torres Strait Islander midwifery student

BACKGROUND Marked differences exist between the maternal and neonatal outcomes of Australian Aboriginal and Torres Strait Islander women and their babies compared with the outcomes for other Australian women and their babies. Australian government policies underline the need to increase the number of practising Aboriginal and Torres Strait Islander midwives and nurses as a strategy for delivering culturally appropriate healthcare to improve health outcomes for Aboriginal and Torres Strait Islander families. Additional challenges are experienced by Aboriginal and/or Torres Strait Islander midwifery students providing Continuity of Care (COC) to Australian Aboriginal and/or Torres Strait Islander childbearing women. One such example is the challenge presented due to the close connections and relationships that exist within some Aboriginal and/or Torres Strait Islander cultures in terms of the maintenance of a professional relationship, in particular, the maintenance of professional boundaries. Whilst there is a growing body of evidence on the benefits to women of continuity of midwifery care models, little is known about the experiences of Aboriginal and Torres Strait Islander women who receive COC from Aboriginal and Torres Strait Islander midwifery students. AIM To explore the experiences of Australian Aboriginal and Torres Strait Islander childbearing women who participated in a Continuity of Care journey with an Aboriginal and/or Torres Strait Islander Bachelor of Midwifery student. METHODS Exploratory, descriptive study using semi-structured interviews informed by an Indigenous Research Methodology. FINDINGS Thematic analysis identified four major themes: (i) communicating our way, (ii) the role of relationships, (iii) support and assistance and (iv) challenges of the system. The findings illustrated the benefits Aboriginal women experience as a result of having Aboriginal and/or Torres Strait Islander midwifery students provide Continuity of Care. CONCLUSION Increasing the number of Australian Aboriginal and/or Torres Strait Islander midwives is essential to improving health outcomes for Australian Aboriginal and Torres Strait Islander childbearing women and their families. Caseload midwifery models with Aboriginal and Torres Strait Islander midwives across Australia are needed. Health services, in partnership with Universities and Aboriginal and Torres Strait Islander communities, have a vital role to play in the development and expansion of these models.

Are teleoncology models merely about avoiding long distance travel for patients

Teleoncology models are used increasingly throughout the world as a means to provide access to quality cancer care for people in rural, remote and other disadvantaged settings. Some authors have suggested that teleoncology is merely about avoiding long distance travel. In this commentary we argue that the benefits of teleoncology extend beyond those of the patients and their families to the rural health system and beyond. We draw upon the literature and results of an evaluation of the Townsville Teleoncology Network (TTN) in North Queensland, Australia to support our arguments.Teleoncology models are used increasingly throughout the world as a means to provide access to quality cancer care for people in rural, remote and other disadvantaged settings. Some authors have suggested that teleoncology is merely about avoiding long distance travel. In this commentary we argue that the benefits of teleoncology extend beyond those of the patients and their families to the rural health system and beyond. We draw upon the literature and results of an evaluation of the Townsville Teleoncology Network (TTN) in North Queensland, Australia to support our arguments.

A prospective comparison of times to presentation and treatment of regional and remote head and neck patients in North Queensland, Australia

This study aims to examine differences between outer regional (OR) and remote/very remote (RVR) patients in northern Queensland, Australia in the times taken to receive various aspects of head and neck cancer management.

Telehealth: a new opportunity to discuss smoking cessation with indigenous cancer patients and their families

[Extract] Public health initiatives aimed at promoting the negative health impacts of smoking have led to decreases in smoking among non-indigenous populations; however, higher rates of smoking continue to be the leading cause of disease burden among indigenous populations throughout the developed world. For Aboriginal and Torres Strait Islander peoples (hereafter referred to as Indigenous Australians), the situation is dire with Indigenous Australians 1.9 times more likely to die of lung cancer Rates of smoking vary within and between Indigenous communities with significantly higher rates reported for Indigenous populations (41%) compared with non-Indigenous Australians (16%). Remoteness and younger age appear to be critical risk factors for higher rates of smoking among Indigenous Australians with rates as high as 62% reported for women aged 15 to 34 years in a remote community in North Queensland and 76% among men in a community in the Northern Territory.

Difficulties experienced by veterinarians when communicating about emerging zoonotic risks with animal owners: the case of Hendra virus

BackgroundCommunication skills are essential for veterinarians who need to discuss animal health related matters with their clients. When dealing with an emerging zoonosis, such as Hendra virus (HeV), veterinarians also have a legal responsibility to inform their clients about the associated risks to human health. Here we report on part of a mixed methods study that examined the preparedness of, and difficulties experienced by, veterinarians communicating about HeV-related risks with their clients.MethodsPhase 1 was an exploratory, qualitative study that consisted of a series of face-to-face, semi-structured interviews with veterinary personnel from Queensland, Australia (2009–10) to identify the barriers to HeV management in equine practices. Phase 2a was a quantitative study that surveyed veterinarians from the same region (2011) and explored the veterinarians’ preparedness and willingness to communicate about HeV-related risks, and the reactions of their clients that they experienced. The second study included both multiple choice and open-ended questions.ResultsThe majority of the participants from Phase 2a (83.1%) declared they had access to a HeV management plan and over half (58.6%) had ready-to-use HeV information available for clients within their practice. Most (87%) reported “always or sometimes” informing clients about HeV-related risks when a horse appeared sick. When HeV was suspected, 58.1% of participants reported their clients were receptive to their safety directives and 24.9% of clients were either initially unreceptive, overwhelmed by fear, or in denial of the associated risks. The thematic analysis of the qualitative data from Phases 1 and 2a uncovered similar themes in relation to HeV-related communication issues experienced by veterinarians: “clients’ intent to adhere”; “adherence deemed redundant”; “misunderstanding or denial of risk”; “cost”; “rural culture”; “fear for reputation”. The theme of “emotional state of clients” was only identified during Phase 1.ConclusionWarning horse owners about health and safety issues that may affect them when present in a veterinary work environment is a legal requirement for veterinarians. However, emerging zoonoses are unpredictable events that may require a different communication approach. Future training programs addressing veterinary communication skills should take into account the particular issues inherent to managing an emerging zoonosis and emphasise the importance of maintaining human safety. Veterinary communication skills and approaches required when dealing with emerging zoonoses should be further investigated.

Breaking Bad News in Ethnic Settings: Perspectives of Patients and Families in Northern Sri Lanka

Purpose The discussion of a cancer diagnosis and prognosis often is difficult. This study explored the expectations of Tamil-speaking patients with cancer and their families with respect to receiving their cancer diagnosis in northern Sri Lanka. Methods This exploratory, descriptive, qualitative study used semistructured interviews. Results Thematic analysis identified two major themes: communication and information seeking. The findings illustrate a discrepancy between patient preference for direct disclosure of the diagnosis and that of families. Ninety-five percent of patients wanted medical staff to disclose their cancer diagnosis, whereas only 45% of family members believed that the diagnosis should be disclosed to the patient rather than to the family. Conclusion Although patients and their family members’ views and expectations of the disclosure of diagnosis and prognosis differ, a majority of patients want to be told directly about their diagnosis rather than to learn of it from a relative. The findings are similar to the literature on other ethnic groups from Sri Lanka and studies from English-speaking developed countries. Therefore, the main questions are how to educate families and physicians about the benefits of open disclosure to patients and how to change culture. Results of this study along with a previous study call for the development of strategies and guidelines to improve societal views, educate patients and families, and train health professionals in the area of breaking bad news and discussing prognosis in the Sri Lankan setting.