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Rudi Harmse Senior Lecturer: School of Information and Communication Technology

Rudi Harmse Senior Lecturer: School of Information and Communication Technology. Institute for Information and Communication Technology Advancement. Autistic self-mastery. The role of e-health systems in enhancing quality of life. Outline. Introduction and basic premise What is e-health?

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Rudi Harmse Senior Lecturer: School of Information and Communication Technology

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  1. Rudi HarmseSenior Lecturer: School of Information and Communication Technology Institute for Information and Communication Technology Advancement

  2. Autistic self-mastery The role of e-health systems in enhancing quality of life

  3. Outline • Introduction and basic premise • What is e-health? • “Quality of life” • The need • Opportunities and threats • The goal • Summary and conclusion (the role of individual autistics?)

  4. Introduction and basic premise • Healthcare systems are struggling to cope • Insufficient services exist to fill the needs • Researchers provide general answers only • Research should align with the experiences of autistic individuals • Members of the autistic community should be involved in informing the research agenda • General research results alone are not enough

  5. What is e-health? • World health organisation: • “e-Health is the combined use of electronic communication and information technology in the health sector.” • Gunter Eysenbach (editor of the Journal of Medical Internet Research): • “e-health is an emerging field in the intersection of medical informatics, public health and business, referring to health services and information delivered or enhanced through the Internet and related technologies. In a broader sense, ....”

  6. What is e-health? (Eysenbach) • In a broader sense, the term characterizes • not only a technical development, but also • a state-of-mind, a way of thinking, an attitude, and • a commitment for networked, global thinking, • to improve health care locally, regionally, and worldwide • by using information and communication technology.

  7. What is e-health? (Eysenbach) • Essential e’s in e-health: • Efficiency • Enhancing quality of care • Evidence based • Empowerment of consumers and patients • Encouragement of new doctor-patient relationships • Education of doctors and consumers • Enabling information exchange • Extending scope of services • Ethics • Equity

  8. “Quality of life”

  9. “Quality of life” • 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

  10. The need

  11. The need • Renty and Roeyers (Autism. 10. 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.

  12. The need (continued) • The most important unmet needs found were: • Accommodation • Daytime activities • ASD-specific information • Interpersonal relationships

  13. Opportunities and threats • In this section the discussion will be guided by the work of Tantam (2006) “Opportunities and risks in e-therapy” Advances in Psychiatric treatment (12) and is divided into 4 categories: • Information • Interactivity • Openness • Disembodied presence

  14. Information Opportunity Threat Information overload Misinformation Disinformation • Availability

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

  16. Openness Opportunity Threat Premature information • Availability • Participation

  17. Disembodied presence Opportunity Threat Withdrawal Deception • Anonymity

  18. 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

  19. Conclusion: Role of individual autistics

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