Talking about health, wellbeing & disability in young people: an ...

Talking about health,wellbeing & disability inyoung people: an AboriginalperspectiveCaris JallaMasters of Philosophy,Health Sciences, School of Psychology & Speech PathologyJan Piek (Supervisor)Cori Williams (Co-Supervisor)Jillian Pearsall-Jones (Co-Supervisor)Marion Kickett (Associate Supervisor)George Hayden (Cultural Consultant)

OVERVIEW• Background• Objectives & Significance• Methodology• SummaryImage from ‘Two Mates’ by Melanie Prewett

The way we look at health…

Aboriginal people & disability• In 2008, one-half of Indigenous adults hadsome form of disability (ABS, 2010)• Around 8% of those aged 15 years or olderhaving “profound or severe core activitylimitation”• In 2008, the proportion of profound or severecore activity restrictions among Indigenouspeople was slightly higher in remote areas(8.1%) than in non-remote areas (7.9%).(SCRGSP, 2011)

Aboriginal people & disability• The 2008 National Aboriginal and Torres StraitIslander social survey (NATSISS) found thatalmost one-in-ten Indigenous children had aneye or sight problem (ABS, 2009)• The Western Australian Aboriginal Child HealthSurvey (WAACHS) reported that almost onefifthof Indigenous children had recurring earinfections (Zubrick et al., 2004)

Aboriginal people & disabilityDisability as defined by the ABS is a ‘limitation,restriction or impairment which has lasted, or islikely to last, for at least six months and restrictseveryday activities’.Aboriginal perceptions of disability…?• Few studies purposefully research Aboriginalperceptions of disability• Current literature – all adults perspectives

Aboriginal people & disability• No word for disability• Don’t see themselves as having a disability; or many notaware of disability• Traditionally not stigmatised• No difference between disability and health issues• Congenial disability vs. accidents• May be seen as 'special' or a 'pay-back' for a pastwrongdoing• Visible conditions more likely to be identified as a disability• Only an issue if condition became a handicap(Ariotti, 1999; Branson, 1992; McDonald, 2009; Mokak, 1997; O’Neill et al.2004; Senior, 2000)

Aboriginal people & disability• Shame• Lack of independence may not be seen as a major issue insome Aboriginal communities if person fulfil family andrelationship obligations• Value mobility than upper limb function• Responsibility of– welfare–a family or community problem (may not actively seekhelp)– self, demand no special attention or burden to community(Clancy, 2002; McDonald, 2006; Maher, 1999; O’Neill et al. 2004; Regan, 2010;Strange, 2008)

Significance• No literature on Aboriginality + disability+ perspective of children and youngpeople

Objectives• Investigate the meaning of health,wellbeing and disability• Explore facilitators and barriers• Report on differences and similarities

Methodology• Cultural consultants x 2• Reference group x 4• Ethics HREC & WAAHEC• Yarning (Bessarab & Ng’andu, 2010)• Consent from primary carers• Access counselling service• Audio-recorded, transcribed verbatim• Thematic analysis with NVivo

Reference GroupJonathanFordRhonda MarriottMichelleSultanRachelVisser

Ethics• Reciprocity• Respect• Equality• Survival• Protection• ResponsibilityNational Health and Medical Research Council Guidelinesfor Ethical Conduct in Aboriginal and Torres StraitIslander Health Research

Yarning…Yarning supplemented with non-verbal expressions e.g. painting

Social yarning…Supplemented with nonverbalexpressionse.g. drawing• Draw self/familyportrait and describeyourself in three words• Timeline of life(Bagnoli, 2009; Mohajer, Bessarab &Earnest, 2009)

Research yarning…• What does it mean to be healthy?• What makes a good life?• Who can help you live a good life?• What stops you from living a good life?• Tell me about this girl….• What about this young bloke? Tell meabout his life…• What would be the hardest thing about hislife?• What would be the best about his life?• What things or people do you think wouldhelp him have a good life?• Picture yourself as this young bloke, howdo you feel?

Participants• 30 Noongar children and young people• 10 to 25 years• Purposive sampling, snowballing• Perth, metro (possible rural inclusion)• Without and with disabilities– Primary diagnosis of sensory or physical

Milestones• Candidacy• Ethics (HR 19/2012 & WAAHEC 424)• Reference group, pilot yarning• Recruitment, Yarning circles• Analysis and dissemination2011 – 2012 2012 – 2013 2013 – 2014Candidacy & ethicsReference groupPilot yarningRecruitment , yarningFollow up (validation) sessionsCommence analysisDissertation &Dissemination

Summary• Aboriginal youths’ view on disability• 15 youths with disabilities• 15 youths without disabilities• Yarning method & thematic analysis• Results to form recommendations todisability service providers

References• Bessarab & Ng’andu (2010). Yarning about Yarning as a Legitimate Method in IndigenousResearch, International Journal of Critical Indigenous Studies, 3 (1), 37-50.• Branson J, Miller D. (1992). Normalisation, community care and the politics of difference.Aust. Disabil. Rev, 4, 7–28.• Brown, R. (2001). Australian Indigenous mental health. Australian and New Zealand Journalof Mental Health Nursing,10(1), 33-41.• Department of Health and Ageing (2010). Working together: Aboriginal and Torres StraitIslander Mental Health and Wellbeing Principals and Practice’ Nola Purdie, Pat Dudgeon, andRoz Walker (eds), Canberra, ACT.• Gilroy, J. (2009). Service delivery for Aboriginal people with a disability and their families.Retrieved June 7, 2012 from http://www.nds.org.au/asset/view_document/979317563• Maher, P. (1999). Disability in the Australian Aboriginal Population. Australian Journal ofPrimary Health, 5(3), 10-20. Retrieved from• McDonald H. East Kimberley concepts of health and illness: a contribution to interculturalhealth programs in northern Australia. Aust. Aborig. Studies 2006; 2: 86–97.• Mokak, R. (1997). Aboriginal People and Disability: What are the Issues and Where Do WeGo from Here? Aboriginal and Islander Health Worker Journal, 21(5), 14-15• O'Neill M, Kirov E, Thomson N (2004) A review of the literature on disability services forAboriginal and Torres Strait Islander peoples. Australian Indigenous Health Bulletin;4 (4):Reviews 1. Retrieved June 7, 2012 fromhttp://www.healthinfonet.ecu.edu.au/uploads/resources/3050_reviews_oneill.pdf