Researching Aboriginal health: experience from a study of urban young people's health and well-being

Holmes, Wendy; Stewart, Paul; Garrow, Anne; Anderson, Ian; Thorpe, Lisa

doi:10.1016/s0277-9536(01)00095-8

Cited by 86 publications

(155 citation statements)

References 26 publications

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“…[172][173][174][175] The benefits of such involvement in health and social care research are manifold. Service users can provide valuable knowledge and insights to research, [176][177][178][179][180][181] encourage recruitment through publicity, 177,179,180 improve quality, relevance and impact of research, [182][183][184][185][186] and potentially help to meet recruitment targets.…”

Section: Introductionmentioning

confidence: 99%

Screening for glucose intolerance and development of a lifestyle education programme for prevention of type 2 diabetes in a population with intellectual disabilities: the STOP Diabetes research project

Dunkley

Tyrer

Spong

et al. 2017

Programme Grants Appl Res

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BackgroundThe prevalence of type 2 diabetes mellitus (T2DM) and of cardiovascular disease (CVD) is believed to be higher among people with intellectual disability (ID) than in the general population. However, research on prevalence and prevention in this population is limited.ObjectivesThe objectives of this programme of work were to establish a programme of research that would significantly enhance the knowledge and understanding of impaired glucose regulation (IGR) and T2DM in people with ID; to test strategies for the early identification of IGR and T2DM in people with ID; and to develop a lifestyle education programme and educator training protocol to promote behaviour change in a population with ID and IGR (or at a high risk of T2DM/CVD).SettingLeicestershire, UK.ParticipantsAdults with ID were recruited from community settings, including residential homes and family homes. Adults with mild to moderate ID who had an elevated body mass index (BMI) of ≥ 25 kg/m2and/or IGR were invited to take part in the education programme.Main outcome measuresThe primary outcome of the screening programme was the prevalence of screen-detected T2DM and IGR. The uptake, feasibility and acceptability of the intervention were assessed.Data sourcesParticipants were recruited from general practices, specialist ID services and clinics, and through direct contact.ResultsA total of 930 people with ID were recruited to the screening programme: 58% were male, 80% were white and 68% were overweight or obese. The mean age of participants was 43.3 years (standard deviation 14.2 years). Bloods were obtained for 675 participants (73%). The prevalence of previously undiagnosed T2DM was 1.3% [95% confidence interval (CI) 0.5% to 2%] and of IGR was 5% (95% CI 4% to 7%). Abnormal IGR was more common in those of non-white ethnicity; those with a first-degree family history of diabetes; those with increasing weight, waist circumference, BMI, diastolic blood pressure or triglycerides; and those with lower high-density lipoprotein cholesterol. We developed a lifestyle educational programme for people with ID, informed by findings from qualitative stakeholder interviews (health-care professionals,n = 14; people with ID,n = 7) and evidence reviews. Subsequently, 11 people with ID (and carers) participated in pilot education sessions (two groups) and five people attended education for the feasibility stage (one group). We found that it was feasible to collect primary outcome measures on physical activity and sedentary behaviour using wrist-worn accelerometers. We found that the programme was relatively costly, meaning that large changes in activity or diet (or a reduction in programme costs) would be necessary for the programme to be cost-effective. We also developed a quality development process for assessing intervention fidelity.LimitationsWe were able to screen only around 30% of the population and involved only a small number in the piloting and feasibility work.ConclusionsThe results from this programme of work have significantly enhanced the existing knowledge and understanding of T2DM and IGR in people with ID. We have developed a lifestyle education programme and educator training protocol to promote behaviour change in this population.Future workFurther work is needed to evaluate the STOP Diabetes intervention to identify cost-effective strategies for its implementation.Trial registrationClinicalTrials.gov NCT02513277.FundingThe National Institute for Health Research Programme Grants for Applied Research programme and will be published in full inHealth Research Programme Grants for Applied Research; Vol. 5, No. 11. See the NIHR Journals Library website for further project information.

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Section: Introductionmentioning

confidence: 99%

Screening for glucose intolerance and development of a lifestyle education programme for prevention of type 2 diabetes in a population with intellectual disabilities: the STOP Diabetes research project

Dunkley

Tyrer

Spong

et al. 2017

Programme Grants Appl Res

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“…1,3,4 In 2002, the National Health and Medical Research Council (NHMRC) launched its Road Map, a set of guidelines for health research with Indigenous communities calling for 'community involvement in the development, conduct and communication of research'. 5 More recently, the National Statement on Ethical Conduct in Human Research states that the 'research approach should value and create opportunities to draw on the knowledge and wisdom of Aboriginal and Torres Strait Islander Peoples by their active engagement in the research processes, including the interpretation of the research data'.…”

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confidence: 99%

“…9 CBPR has often been utilised in research with vulnerable or marginalised populations and is increasingly employed in research with Indigenous communities. 1,[9][10][11][12][13][14][15][16][17] The principles and characteristics of CBPR are considered to have the potential to address the failings, and 'colonisingeffects', of previous research on Indigenous peoples. 8 Further, by involving affected communities in the analysis and interpretation of data, CBPR has the potential to avoid the misrepresentation of 'Indigenous societies, culture and persons by non-Indigenous academics and professionals'.…”

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confidence: 99%

The Indigenous Resiliency Project: a worked example of community-based participatory research

Mooney-Somers¹,

Maher²

2009

NSW Public Health Bull.

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“…However, many question the role of government in providing services, arguing that Indigenous people should be supported in the development of their own solutions, rather than having solutions imposed on or provided for them (Abdolhosseini et al, 2015;Lowell et al, 2003). For example, in AU a history of discrimination and displacement from land, culture, and family has generated a feeling of mistrust among the Indigenous people (Holmes et al, 2002), and such mistrust may prevent the government from gaining sufficient traction to effectively address the Indigenous health gap. Arguably, where the government should claim responsibility is in funding and evaluating Indigenous healthcare and promotion initiatives.…”

Section: Policy Implicationsmentioning

confidence: 99%

Principles and strategies for improving the prevention of cardio-metabolic diseases in indigenous populations: An international Delphi study

Stoner

Matheson

Perry

et al. 2017

Preventive Medicine

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The disparity in life expectancy between Indigenous and non-Indigenous populations is being driven by a heightened incidence of cardio-metabolic diseases, and is at least partly underpinned by educational, economic and historical determinants. However, there is a lack of consensus with regards to priorities for tackling these determinants. Therefore, the current study recruited experts in Indigenous cardio-metabolic health from Australia, New Zealand and the United States, in order to establish local consensus opinion and initiate dialogue. A three-round Delphi process was used to consolidate and compare the opinions of 60 experts, 20 from each country. Round one, the experts were asked three open-ended questions: (i) historical, (ii) economic and (iii) socio-cultural factors contributors to cardio-metabolic disease risk. Round two, the experts completed a structured questionnaire based on results from the first round, in which they ranked items according to their importance. Final round, the experts were asked to re-rank the same items after receiving summary feedback about the rank ordering from the previous round. Several key findings were identified: (i) an important historical factor is marginalization and disempowerment; (ii) in terms of economic and sociocultural factors, the panellists came to the consensus that socio-economic status and educational inequalities are important; (iii) while consensus was not reached, economic and educational factors also perceived to be historically influential. These findings support the need for multi-level health promotion policy. For example, tackling financial barriers that limit access to health-promoting resources, and improving literacy skills to permit understanding of health education.

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Researching Aboriginal health: experience from a study of urban young people's health and well-being

Cited by 86 publications

References 26 publications

Screening for glucose intolerance and development of a lifestyle education programme for prevention of type 2 diabetes in a population with intellectual disabilities: the STOP Diabetes research project

Screening for glucose intolerance and development of a lifestyle education programme for prevention of type 2 diabetes in a population with intellectual disabilities: the STOP Diabetes research project

The Indigenous Resiliency Project: a worked example of community-based participatory research

Principles and strategies for improving the prevention of cardio-metabolic diseases in indigenous populations: An international Delphi study

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