Technology and Caregiving

1. Technology and Caregiving Richard Schulz, Ph.D. University of Pittsburgh Computer-Based Technology and Caregiving for Older Adults, Spry National Conference, October 3, 2003

2. Tour de force of… • Creative ideas, products, applications, methodologies, issues, challenges • How does it all fit together?

3. Some common themes—what have we achieved, where do we stand? • The centrality of information • A philosophy for the application of technology to health and well-being • Outcomes measurement • Well-defined problems as starting points • Identifying barriers • Challenges

4. The Centrality of Information… • Much of technology is focused on • Generating—sensory devices, telehealth (Alwan) • Collecting—Patient Safety Institute (Walker) • Organizing—Atlantic Regional Commission (Schramm) • Transmitting—Piers study (Aversano) • Interpreting—(Aversano) • Disseminating—(Schramm)

5. Philosophical approach… • Perlin—safety, quality, patient centered, linkages and coordination • Cobb—importance of care coordinator—regulates information flow among patient, family, and health care provider • Cantor—protecting privacy, who control information about self and others • Irvine—tailoring and targeting

6. Outcomes… • Survival (Aversano), Health (Lehman), functioning…quality of life (VA) • Health care utilization (VA Examples, Lehman) • Cost analysis (Harrow, Whitten) • Patient/Provider satisfaction (Whitten) • “You see it, hear about it, want it “ (Ackerman)

7. Well-defined and Ill-defined problems… • CHF, Diabetes --(Lehman) • Acute MI—(Aversano) • Nursebot—(Matthews) multiple well-defined functions • Caregiving

8. Barriers… • Older persons and “computers” (Cobb) • Utility trade-offs • Next generation of older users • Provider Resistance-- (Whitten) • Learning curve problem (Whitten) • Changing definitions of professionalism (Cantor)

9. The Challenges • Methodologic Issues • Conceptual Issues • Ethical/Liability/Acceptability Issues • Evaluation Assessment Issues

10. Methodological issues • Study design • Sample size and composition • Statistical power and analytic methods • Reliability and validity of key measures • Delivery assessment • Role of technology • Relative value/cost-effectiveness

11. Conceptual issues • How do you talk about technology across studies, applications, • Develop taxonomy for characterizing technology-based interventions • Whitten—type of information transmitted: data only, video and audio, video/audio plus data

12. Functions and Features

13. Ethical/Liability/Access Issues • Technology facilitates decisions/behaviors • Who is responsible for wrong decisions/actions? • Invasion of privacy • “By entering this home you agree to be under surveillance” • How much information do you want and how much are people willing to provide? • Variability in access and usability—enhance health disparities • Technology can undermine functioning, adaptive capacity by providing too much support

14. Feasibility and usability • Training needs • Factors that limit access • Adaptability to individual needs

15. Evaluating Technology • The pocketbook vote as outcome • Feasibility, Usability, Acceptability, Cost-effectiveness • Conflicting Stake Holders • Older person • Family member • Health care provider • Insurer

16. The information processing problem • Capacity to generate vast amounts of information—poses profound data reduction interpretation challenges (the software problem) • Too much, ambiguous/inconsistent, and unreliable information • Regulating information flow • Data reduction needs will vary for different user • Potential for bad decisions, anxiety, distress, guilt, or alternatively, a false sense security

17. End

18. Caregiver Interventions • Education on disease and available resources • Training in problem solving; behavior and emotion management • Counseling, case management • Instrumental and emotional support

19. Multi-component interventions and their impact on the stress-health process Stress-Health Process Care Recipient: Disability, Problem Behaviors, Physical and Social Environment Pharmacologic Treatment, Environmental Changes Social Support Appraisal of demands and adaptive capacities Education Perceived Stress Skills Training Emotional/ Behavioral Response Self Care, Preventive Health Practices Morbidity/Mortality Communication

20. Key Questions: • 1. What types of technology have been used in caregiving interventions and how effective have they been? • 2. What are the limitations of the existing research in this area? • 3. What are the future opportunities for applications of technology to caregiving?

21. Review Methodology • Data base searches—Feb. to Aug., 2002 • Medline 2966-2002 • PsychINFO 1967-2002 • CancerLIT 1975-2002 • CinAHL 1982-2002 • Evidence-based databases 1991-2002 • Cochran Controlled Trials Register, Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effectiveness • Targeted journals: Journal of Telemedicine and Telecare, Telematics and Informatics

22. Inclusion/Exclusion Criteria • Inclusion Criteria • Peer-reviewed journal reporting participant outcomes • Used technology to deliver intervention to older caregiver and/or older adult/patient coping with chronic physical illness or aging-related issues • Exclusion Criteria • Used technology as adjunct to non-tech. intervention • Focused solely on personal assistive devices • Technology incidental to intervention, not differentiated by treatment • Focused on older residents in long-term care facilities

23. Yield and Characteristics • 26 papers found reporting results of 22 non-overlapping studies • Methods: 8 (36%) randomized clinical trials • Targets: Caregivers only (23%), care recipients only (36%), both (41%) • Conditions: Dementia (36%), hypertension, stroke, visually impaired, …

24. Technologies Used • Telephone 50% • Internet 14% • Video/audio/computer 9% • Various combinations including infrared sensing

25. Proximal goals of interventions Percent

26. Primary outcomes of studies • Improve physical or psychosocial health • Burden, depression, emotional and relationship strain, activity restriction • Usability and satisfaction • Promote independent functioning • Development of assessment methods/tools

27. Current Applications • Low-level adaptations of common objects, such as tableware and furniture • Social support, technical assistance, and respite provided via telephone, videotape, and computers • Sophisticated monitoring of activity, location, and physical status through telemetric approaches

28. Caregiving and technology—Unique features • Information on demand – quickly, across long distances, and tailored to needs of individuals and groups • Increased access to health and social service professionals • Access to multiple delivery modes (e.g., visual and auditory) • Option of sender and/or receiver anonymity, facilitating the delivery of sensitive information