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A Reflection on the Potential Impact of e-Health Systems on the Prognosis for Asperger Syndrome

A Reflection on the Potential Impact of e-Health Systems on the Prognosis for Asperger Syndrome. Rudi Harmse. Institute for ICT Advancement. Outline. Consumer Focused e-Health Systems Autism Spectrum Disorder Asperger Syndrome Quality of Life Opportunities and Threats.

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A Reflection on the Potential Impact of e-Health Systems on the Prognosis for Asperger Syndrome

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  1. A Reflection on the Potential Impact of e-Health Systems on the Prognosis for Asperger Syndrome Rudi Harmse Institute for ICT Advancement

  2. Outline • Consumer Focused e-Health Systems • Autism Spectrum Disorder • Asperger Syndrome • Quality of Life • Opportunities and Threats What is the difference? Why does it matter?

  3. Consumer Focused e-Health Systems • Aim to empower users: • To take greater responsibility • for their own health • general wellbeing • By providing • relevant • cost effective services • at the point of need. • This requires understanding the needs of the consumers. • Especially if the consumer population has: • Different cognitive processes • Different reactions to medications

  4. Autism Spectrum Disorder • Spectrum of disorders • Common core deficits but diverse symptoms • Changing understanding of prevalence • Once thought 0.04% with 70-80% severe learning disability • More recently 0.6% with 80-90% normal learning ability • Triad of impairment: • Communication • Social skills • Behaviour inflexibility

  5. Asperger Syndrome • Generally less severe autistic behaviour • Higher IQs • Better language skills • Show desire to interact with others but lack social skills • Typically diagnosed later in life • In adults difficulties may be subtle and especially present in • Communication • Social relationships • Interests

  6. “Quality of life”

  7. Quality of Life (1/2) • Refers to factors that together express personal wellbeing • 8 quality of life domains can be recognised: • Emotional wellbeing • Interpersonal relationships • Material wellbeing • Personal development • Physical wellbeing • Self-determination • Social inclusion • Rights

  8. Quality of Life (2/2) • Renty and Roeyers (2006) found that among individuals with an ASD: • The support characteristics were a greater determining factor on quality of life than the disability characteristics themselves • The most important factors found were: • Perceived (as opposed to actual) informal support • Unmet formal support needs • Therefore both perceptions and specific needs of individuals should be addressed to improve quality of life.

  9. Opportunities and Threats • In this section the discussion will be guided by the work of Tantam (2006) “Opportunities and risks in e-therapy” and is divided into 4 categories: • Information • Interactivity • Openness • Disembodied presence

  10. Information Opportunity Threat Information overload Misinformation Disinformation • Availability

  11. Interactivity Opportunity Threat Unreflective responses Confidentiality breach Withdrawal Abuse Variable quality • Clarifying advice • Alternative communication • Links with peers • Access to services

  12. Openness Opportunity Threat Premature information • Availability • Participation

  13. Disembodied presence Opportunity Threat Withdrawal Deception • Anonymity

  14. The goal • E-health systems should be designed to operate with • A person-centered methodology • Providing the means to strengthen social support networks • Providing support tailored to specific needs • Preserving individual control during the process • Researchers and system developers should engage with the autistic community to ensure that such systems are relevant and appropriate

  15. Thank You Return to introduction slide

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