Dataset Information

Research protocol for the Picture Talk Project: a qualitative study on research and consent with remote Australian Aboriginal communities.

ABSTRACT: INTRODUCTION:Research with Indigenous populations is not always designed with cultural sensitivity. Few publications evaluate or describe in detail seeking consent for research with Indigenous participants. When potential participants are not engaged in a culturally respectful manner, participation rates and research quality can be adversely affected. It is unethical to proceed with research without truly informed consent. METHODS AND ANALYSIS:We describe a culturally appropriate research protocol that is invited by Aboriginal communities of the Fitzroy Valley in Western Australia. The Picture Talk Project is a research partnership with local Aboriginal leaders who are also chief investigators. We will interview Aboriginal leaders about research, community engagement and the consent process and hold focus groups with Aboriginal community members about individual consent. Cultural protocols will be applied to recruit and conduct research with participants. Transcripts will be analysed using NVivo10 qualitative software and themes synthesised to highlight the key issues raised by the community about the research process. This protocol will guide future research with the Aboriginal communities of the Fitzroy Valley and may inform the approach to research with other Indigenous communities of Australia or the world. It must be noted that no community is the same and all research requires local consultation and input. To conduct culturally sensitive research, respected local people from the community who have knowledge of cultural protocol and language are engaged to guide each step of the research process from the project design to the delivery of results. ETHICS AND DISSEMINATION:Ethics approval was granted by the University of Sydney Human Research Ethics Committee (No. 2012/348, reference:14760), the Western Australia Country Health Service Ethics Committee (No. 2012:15), the Western Australian Aboriginal Health Ethics Committee and reviewed by the Kimberley Aboriginal Health Planning Forum Research Sub-Committee (No. 2012-008). Results will be disseminated through peer review articles, a local Fitzroy Valley report and conference presentations.

SUBMITTER: Fitzpatrick EFM

PROVIDER: S-EPMC5770946 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:Indigenous infants and children in Australia, especially in remote communities, experience early and chronic otitis media (OM) which is difficult to treat and has lifelong impacts in health and education. The LiTTLe Program (Learning to Talk, Talking to Learn) aimed to increase infants' access to spoken language input, teach parents to manage health and hearing problems, and support children's school readiness. This paper aimed to explore caregivers' views about this inclusive, parent-implemented early childhood program for 0-3 years in an Aboriginal community health context.Data from in-depth, semi-structured interviews with 9 caregivers of 12 children who had participated in the program from one remote Aboriginal community in the Northern Territory are presented. Data were analysed thematically. Caregivers provided overall views on the program. In addition, three key areas of focus in the program are also presented here: speech and language, hearing health, and school readiness.Caregivers were positive about the interactive speech and language strategies in the program, except for some strategies which some parents found alien or difficult: such as talking slowly, following along with the child's topic, using parallel talk, or baby talk. Children's hearing was considered by caregivers to be important for understanding people, enjoying music, and detecting environmental sounds including signs of danger. Caregivers provided perspectives on the utility of sign language and its benefits for communicating with infants and young children with hearing loss, and the difficulty of getting young community children to wear a conventional hearing aid. Caregivers were strongly of the opinion that the program had helped prepare children for school through familiarising their child with early literacy activities and resources, as well as school routines. But caregivers differed as to whether they thought the program should have been located at the school itself.The caregivers generally reported positive views about the LiTTLe Program, and also drew attention to areas for improvement. The perspectives gathered may serve to guide other cross-sector collaborations across health and education to respond to OM among children at risk for OM-related disability in speech and language development.

Project description:BackgroundA healthy start predicts better health in later life. Many remote-living Aboriginal and Torres Strait Islander Australian families lack access to consistent, culturally-safe health services. This paper presents a study of implementation of the Baby One Program (BOP). The BOP was designed as a family-centred, Indigenous Healthworker-led, home-visiting model of care focused on promoting family health to give children the best start to life. It was developed by Aboriginal community-controlled Apunipima Cape York Health Council and delivered in Queensland Cape York remote communities. We aimed to determine how the BOP was implemented, enablers, strategies used and formative implementation outcomes.MethodsThe qualitative approach utilised theoretical and purposive sampling to explore people's experiences of a program implementation process. Data were generated from semi-structured interviews with four family members enrolled in the BOP and 24 Apunipima staff members. In addition, twenty community members, including two program users, participated in a men's community focus group. The findings are presented according to themes arising from the data.ResultsThe BOP was rolled out in nine remote Cape York communities between July 2014 and December 2015 and there was high uptake. Indigenous Healthworkers were supported by midwives and maternal and child health nurses to deliver health education to 161 eligible families. The key to effective implementation of family-centred care appeared to be the relationships formed between health practitioners, especially Indigenous Healthworkers, and families. The data revealed the following themes: challenging environments for new families and valuing cultural ways, resourcing program delivery, working towards a team approach, negotiating the cultural interface, engaging families, exchanging knowledge through 'yarning', strengthening the workforce, and seeing health changes in families. Healthworker education and training, and knowledge exchange between Healthworkers, midwives and nurses was critical to program effectiveness. The program continues to grow despite substantial logistic, financial and practical challenges.ConclusionsThis study describes an evolving process and explores how health providers connect with families and how the program responds to family and cultural issues. Program development is ongoing; strengthened by more community-level involvement, embedded strategies for ongoing self-evaluation and continuous quality improvements that are responsive to family needs.

Project description:ObjectivesTo examine barriers and facilitators to sustaining a sexual health continuous quality improvement (CQI) programme in clinics serving remote Aboriginal communities in Australia.DesignQualitative study.SettingPrimary health care services serving remote Aboriginal communities in the Northern Territory, Australia.ParticipantsSeven of the 11 regional sexual health coordinators responsible for supporting the Northern Territory Government Remote Sexual Health Program.MethodsSemi-structured in-depth interviews conducted in person or by telephone; data were analysed using an inductive and deductive thematic approach.ResultsDespite uniform availability of CQI tools and activities, sexual health CQI implementation varied across the Northern Territory. Participant narratives identified five factors enhancing the uptake and sustainability of sexual health CQI. At clinic level, these included adaptation of existing CQI tools for use in specific clinic contexts and risk environments (eg, a syphilis outbreak), local ownership of CQI processes and management support for CQI. At a regional level, factors included the positive framing of CQI as a tool to identify and act on areas for improvement, and regional facilitation of clinic level CQI activities. Three barriers were identified, including the significant workload associated with acute and chronic care in Aboriginal primary care services, high staff turnover and lack of Aboriginal staff. Considerations affecting the future sustainability of sexual health CQI included the need to reduce the burden on clinics from multiple CQI programmes, the contribution of regional sexual health coordinators and support structures, and access to and use of high-quality information systems.ConclusionsThis study contributes to the growing evidence on how CQI approaches may improve sexual health in remote Australian Aboriginal communities. Enhancing sustainability of sexual health CQI in this context will require ongoing regional facilitation, efforts to build local ownership of CQI processes and management of competing demands on health service staff.

Project description:ObjectivesTo evaluate the benefit and risk of low-dose acetylsalicylic acid (aspirin) in patients from remote Aboriginal communities in the Northern Territory, Australia.DesignRetrospective cohort study using primary care and hospital data routinely used for healthcare. Aspirin users and non-users were compared before and after controlling confounders by matching. Marginal structural models (MSM) were applied to ascertain the benefit and risk.SettingThe benefit and harm of aspirin were investigated in patients aged ≥18 years from 54 remote Aboriginal communities.ParticipantsNone had a previous cardiovascular event or major bleeds. Patients on anticoagulants or other antiplatelets were excluded.InterventionAspirin at a dose of 75-162 mg/day.Outcome measuresEndpoints were all-cause, cardiovascular mortality and incidences of cardiovascular events and major bleeds.Results8167 predominantly Aboriginal adults were included and followed between July 2009 and June 2017 (aspirin users n=1865, non-users n=6302, mean follow-up 4 years with hospitalisations 6.4 per person). Univariate analysis found material differences in demographics, prevalence of chronic diseases and outcome measures between aspirin users and non-users before matching. After matching, aspirin was significantly associated with reduced all-cause mortality (HR=0.45: 95% CI 0.34 to 0.60; p<0.001), but not bleeding (HR=1.13: 95% CI 0.39 to 3.26; p=0.820). After using MSMs to eliminate the effects of confounders, loss of follow-up and time dependency of treatment, aspirin was associated with reduced all-cause mortality (HR=0.60: 95% CI 0.47 to 0.76; p<0.001), independent of age (HR=1.06; p<0.001), presence of diabetes (HR=1.42; p<0.001), hypertension (HR=1.61; p<0.001) and alcohol abuse (HR=1.81; p<0.001). No association between aspirin and major bleeding was found (HR=1.14: 95% CI 0.48 to 2.73; p=0.765). Sensitivity analysis suggested these findings were unlikely to have been the result of unmeasured confounding.ConclusionAspirin was associated with reduced all-cause mortality. Bleeding risk was less compared with survival benefits. Aspirin should be considered for primary prevention in Aboriginal people with high cardiovascular risk.

Dataset Information

Research protocol for the Picture Talk Project: a qualitative study on research and consent with remote Australian Aboriginal communities.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets