Technology and CaregivingTechnology and Caregiving

Richard Schulz, Ph.D.Richard Schulz, Ph.D.University of PittsburghUniversity of Pittsburgh

Computer-Based Technology and Caregiving for Computer-Based Technology and Caregiving for Older Adults, Spry National Conference, October Older Adults, Spry National Conference, October

3, 20033, 2003

Tour de force of…Tour de force of…

Creative ideas, products, Creative ideas, products, applications, methodologies, issues, applications, methodologies, issues, challengeschallenges

How does it all fit together?How does it all fit together?

Some common themes—what Some common themes—what have we achieved, where do have we achieved, where do

we stand?we stand? The centrality of informationThe centrality of information A philosophy for the application of A philosophy for the application of

technology to health and well-beingtechnology to health and well-being Outcomes measurementOutcomes measurement Well-defined problems as starting Well-defined problems as starting

pointspoints Identifying barriers Identifying barriers ChallengesChallenges

The Centrality of The Centrality of Information…Information…

Much of technology is focused on Much of technology is focused on Generating—sensory devices, telehealth Generating—sensory devices, telehealth

(Alwan)(Alwan) Collecting—Patient Safety Institute (Walker)Collecting—Patient Safety Institute (Walker) Organizing—Atlantic Regional Commission Organizing—Atlantic Regional Commission

(Schramm)(Schramm) Transmitting—Piers study (Aversano)Transmitting—Piers study (Aversano) Interpreting—(Aversano)Interpreting—(Aversano) Disseminating—(Schramm)Disseminating—(Schramm)

Philosophical approach…Philosophical approach…

Perlin—safety, quality, patient Perlin—safety, quality, patient centered, linkages and coordinationcentered, linkages and coordination

Cobb—importance of care coordinator—Cobb—importance of care coordinator—regulates information flow among patient, regulates information flow among patient, family, and health care providerfamily, and health care provider

Cantor—protecting privacy, who Cantor—protecting privacy, who control information about self and control information about self and othersothers

Irvine—tailoring and targetingIrvine—tailoring and targeting

Outcomes…Outcomes…

Survival (Aversano), Health (Lehman), Survival (Aversano), Health (Lehman), functioning…quality of life (VA)functioning…quality of life (VA)

Health care utilization (VA Examples, Health care utilization (VA Examples, Lehman)Lehman)

Cost analysis (Harrow, Whitten)Cost analysis (Harrow, Whitten) Patient/Provider satisfaction (Whitten)Patient/Provider satisfaction (Whitten) ““You see it, hear about it, want it “ You see it, hear about it, want it “

(Ackerman)(Ackerman)

Well-defined and Ill-defined Well-defined and Ill-defined problems…problems…

CHF, Diabetes --(Lehman)CHF, Diabetes --(Lehman) Acute MI—(Aversano)Acute MI—(Aversano) Nursebot—(Matthews) multiple well-Nursebot—(Matthews) multiple well-

defined functionsdefined functions

CaregivingCaregiving

Barriers…Barriers…

Older persons and “computers” (Cobb)Older persons and “computers” (Cobb) Utility trade-offsUtility trade-offs Next generation of older usersNext generation of older users

Provider Resistance-- (Whitten)Provider Resistance-- (Whitten) Learning curve problem (Whitten)Learning curve problem (Whitten) Changing definitions of Changing definitions of

professionalism (Cantor)professionalism (Cantor)

The ChallengesThe Challenges

Methodologic IssuesMethodologic Issues Conceptual IssuesConceptual Issues Ethical/Liability/Acceptability IssuesEthical/Liability/Acceptability Issues Evaluation Assessment IssuesEvaluation Assessment Issues

Methodological issuesMethodological issues

Study designStudy design Sample size and compositionSample size and composition Statistical power and analytic methodsStatistical power and analytic methods Reliability and validity of key measuresReliability and validity of key measures Delivery assessmentDelivery assessment Role of technologyRole of technology Relative value/cost-effectivenessRelative value/cost-effectiveness

Conceptual issuesConceptual issues

How do you talk about technology across How do you talk about technology across studies, applications, studies, applications,

Develop taxonomy for characterizing Develop taxonomy for characterizing technology-based interventionstechnology-based interventions Whitten—type of information transmitted: data Whitten—type of information transmitted: data

only, video and audio, video/audio plus dataonly, video and audio, video/audio plus data

FunctionsFunctions and Features and FeaturesOn On demandemandd

Across Across distancdistancee

TailorinTailoringg

AnonymitAnonymityy

KnowledKnowledgege

Access to Access to ExpertsExperts

Decision Decision SupportSupport

RespiteRespite

MonitorinMonitoringg

Social Social SupportSupport

Ethical/Liability/Access IssuesEthical/Liability/Access Issues

Technology facilitates decisions/behaviorsWho 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

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

needs

Evaluating TechnologyEvaluating Technology

The pocketbook vote as The pocketbook vote as outcomeoutcome

Feasibility, Usability, Feasibility, Usability, Acceptability, Cost-Acceptability, Cost-effectivenesseffectiveness

Conflicting Stake HoldersConflicting Stake HoldersOlder personOlder personFamily memberFamily memberHealth care providerHealth care providerInsurerInsurer

The information processing problemThe information processing problem Capacity to generate vast amounts Capacity to generate vast amounts of information—poses profound data of information—poses profound data reduction interpretation challenges reduction interpretation challenges (the software problem)(the software problem)

Too much, Too much, ambiguous/inconsistent, and ambiguous/inconsistent, and unreliable informationunreliable informationRegulating information flowRegulating information flowData reduction needs will vary for Data reduction needs will vary for different userdifferent user

Potential for bad decisions, anxiety, Potential for bad decisions, anxiety, distress, guilt, or alternatively, a false distress, guilt, or alternatively, a false sense securitysense security

EndEnd

Caregiver InterventionsCaregiver Interventions

Education on disease and Education on disease and available resourcesavailable resources

Training in problem solving; Training in problem solving; behavior and emotion behavior and emotion managementmanagement

Counseling, case Counseling, case managementmanagement

Instrumental and emotional Instrumental and emotional supportsupport

Care Recipient: Disability, Problem Behaviors, Physical and

Social Environment

Appraisal of demands and adaptive capacities

Perceived Stress

Emotional/ Behavioral Response

Morbidity/Mortality

Stress-Health Process Intervention ComponentsIntervention Components

Pharmacologic Treatment,Environmental Changes

Social Support

Self Care, Preventive Health Practices

Communication

Skills Training

Education

Multi-component interventions and their impact on the stress-health process

Key Questions:Key Questions:

1. What types of technology have been What types of technology have been used in caregiving interventions and how used in caregiving interventions and how effective have they been?effective have they been?

2. What are the limitations of the existing 2. What are the limitations of the existing research in this area?research in this area?

3. What are the future opportunities for 3. What are the future opportunities for applications of technology to caregiving?applications of technology to caregiving?

Review MethodologyReview Methodology

Data base searches—Feb. to Aug., 2002Data base searches—Feb. to Aug., 2002 Medline 2966-2002Medline 2966-2002 PsychINFO 1967-2002PsychINFO 1967-2002 CancerLITCancerLIT 1975-20021975-2002 CinAHL 1982-2002CinAHL 1982-2002 Evidence-based databases 1991-2002Evidence-based databases 1991-2002

Cochran Controlled Trials Register, Cochrane Cochran Controlled Trials Register, Cochrane Database of Systematic Reviews, Database of Database of Systematic Reviews, Database of Abstracts of Reviews of EffectivenessAbstracts of Reviews of Effectiveness

Targeted journals: Journal of Telemedicine and Targeted journals: Journal of Telemedicine and Telecare, Telematics and InformaticsTelecare, Telematics and Informatics

Inclusion/Exclusion CriteriaInclusion/Exclusion Criteria

Inclusion CriteriaInclusion Criteria Peer-reviewed journal reporting participant Peer-reviewed journal reporting participant

outcomesoutcomes Used technology to deliver intervention to older Used technology to deliver intervention to older

caregiver and/or older adult/patient coping with caregiver and/or older adult/patient coping with chronic physical illness or aging-related issueschronic physical illness or aging-related issues

Exclusion CriteriaExclusion Criteria Used technology as adjunct to non-tech. interventionUsed technology as adjunct to non-tech. intervention Focused solely on personal assistive devicesFocused solely on personal assistive devices Technology incidental to intervention, not Technology incidental to intervention, not

differentiated by treatmentdifferentiated by treatment Focused on older residents in long-term care Focused on older residents in long-term care

facilitiesfacilities

Yield and CharacteristicsYield and Characteristics

26 papers found reporting results of 26 papers found reporting results of 22 non-overlapping studies22 non-overlapping studies

Methods: 8 (36%) randomized clinical Methods: 8 (36%) randomized clinical trialstrials

Targets: Caregivers only (23%), care Targets: Caregivers only (23%), care recipients only (36%), both (41%)recipients only (36%), both (41%)

Conditions: Dementia (36%), Conditions: Dementia (36%), hypertension, stroke, visually hypertension, stroke, visually impaired, …impaired, …

Technologies UsedTechnologies Used

TelephoneTelephone 50%50% InternetInternet 14%14% Video/audio/computerVideo/audio/computer 9% 9% Various combinations including Various combinations including

infrared sensinginfrared sensing

Proximal goals of Proximal goals of interventionsinterventions

0

10

20

30

40

50

60

70

Knowledge SocialSupport

Access toExperts

DecisionSupport

Assessm./ Monitor.

AffectManagem.

Respite

Percent

Primary outcomes of studiesPrimary outcomes of studies

Improve physical or psychosocial Improve physical or psychosocial healthhealth Burden, depression, emotional and Burden, depression, emotional and

relationship strain, activity restrictionrelationship strain, activity restriction Usability and satisfactionUsability and satisfaction

Promote independent functioningPromote independent functioning

Development of assessment Development of assessment methods/toolsmethods/tools

Current ApplicationsCurrent Applications

Low-level adaptations of common Low-level adaptations of common objects, such as tableware and objects, such as tableware and furniturefurniture

Social support, technical Social support, technical assistance, and respite provided assistance, and respite provided via telephone, videotape, and via telephone, videotape, and computerscomputers

Sophisticated monitoring of Sophisticated monitoring of activity, location, and physical activity, location, and physical status through telemetric status through telemetric approachesapproaches

Caregiving and technology—Caregiving and technology—Unique featuresUnique 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