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?  “Quality of life”  The need  Opportunities and threats  The goal  Summary and conclusion (the role of individual autistics?)

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

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,....”

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.

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

“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

The need

 Renty and Roeyers (Autism ) 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.

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

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

Information Opportunity  Availability Threat  Information overload  Misinformation  Disinformation

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

Openness Opportunity  Availability  Participation Threat  Premature information

Disembodied presence Opportunity  Anonymity Threat  Withdrawal  Deception

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

Conclusion: Role of individual autistics