Browsing by Author "Edwards T."
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Item A pilot study of the quality of informed consent materials for Aboriginal participants in clinical trials.(2005-08-31) Russell F.M.; Carapetis J.R.; Liddle H.; Edwards T.; Ruff T.A.; Devitt J.Objective: To pilot informed consent materials developed for Aboriginal parents in a vaccine trial, and evaluate their design and the informed consent process. Method(s): Cross sectional quantitative and qualitative survey of 20 Aboriginal and 20 non-Aboriginal women in Alice Springs. Information about the proposed research was presented to Aboriginal participants by an Aboriginal researcher, using purpose designed verbal, visual, and written materials. Non-Aboriginal participants received standard materials developed by the sponsor. Questionnaires were used to evaluate recall and understanding immediately and five days later. Qualitative analysis of Aboriginal participants' interviews was performed. Result(s): There were no differences between the groups in understanding of diseases prevented by the vaccine, the potential risks of participating, or the voluntary nature of participation. Most Aboriginal participants had difficulty with the concept of a "licensed" versus "unlicensed" vaccine. The non-Aboriginal group had a good understanding of this. Aboriginal participants identified the use of the flipchart, along with a presentation by a doctor and Aboriginal health worker, as preferred delivery modes. Group presentations were preferred rather than one-on-one discussions. The use of the questionnaire posed considerable methodological difficulties. Conclusion(s): A one-off oral presentation to Aboriginal participants is unlikely to produce "informed consent". Key but unfamiliar concepts require identification and particularly considered presentation.Item Community perspectives of complex trauma assessment for Aboriginal parents: 'its important, but how these discussions are held is critical'.Chamberlain C.; Gee G.; Gartland D.; Mensah F.K; Mares S.; Clark Y.; Ralph N.; Atkinson C.; Hirvonen T.; McLachlan H.; Edwards T.; Herrman H.; Brown S.J.; Nicholson J.M.Background and Purpose: Becoming a parent can be an exciting and also challenging transition, particularly for parents who have experienced significant hurt in their own childhoods, and may be experiencing 'complex trauma.' Aboriginal and Torres Strait Islander (Aboriginal) people also experience historical trauma. While the parenting transition is an important time to offer support for parents, it is essential to ensure that the benefits of identifying parents experiencing complex trauma outweigh any risks (e.g., stigmatization). This paper describes views of predominantly Aboriginal stakeholders regarding (1) the relative importance of domains proposed for complex trauma assessment, and (2) how to conduct these sensitive discussions with Aboriginal parents. Setting and Methods: A co-design workshop was held in Alice Springs (Central Australia) as part of an Aboriginal-led community-based participatory action research project. Workshop participants were 57 predominantly Aboriginal stakeholders with expertise in community, clinical, policy and academic settings. Twelve domains of complex trauma-related distress had been identified in existing assessment tools and through community consultation. Using story-telling and strategies to create safety for discussing complex and sensitive issues, and delphi-style methods, stakeholders rated the level of importance of the 12 domains; and discussed why, by whom, where and how experiences of complex trauma should be explored. Main Findings: The majority of stakeholders supported the importance of assessing each of the proposed complex trauma domains with Aboriginal parents. However, strong concerns were expressed regarding where, by whom and how this should occur. There was greater emphasis and consistency regarding 'qualities' (e.g., caring), rather than specific 'attributes' (e.g., clinician). Six critical overarching themes emerged: ensuring emotional and cultural safety; establishing relationships and trust; having capacity to respond appropriately and access support; incorporating less direct cultural communication methods (e.g., yarning, dadirri); using strengths-based approaches and offering choices to empower parents; and showing respect, caring and compassion. Conclusion: Assessments to identify Aboriginal parents experiencing complex trauma should only be considered when the prerequisites of safety, trusting relationships, respect, compassion, adequate care, and capacity to respond are assured. Offering choices and cultural and strengths-based approaches are also critical. Without this assurance, there are serious concerns that harms may outweigh any benefits for Aboriginal parents. (PsycInfo Database Record (c) 2022 APA, all rights reserved)