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Consumer Response to Home Monitoring

Permanent Link: http://ufdc.ufl.edu/UFE0021957/00001

Material Information

Title: Consumer Response to Home Monitoring A Survey of Older Consumers and Informal Care Providers
Physical Description: 1 online resource (90 p.)
Language: english
Publisher: University of Florida
Place of Publication: Gainesville, Fla.
Publication Date: 2008

Subjects

Subjects / Keywords: elderly, home, monitoring, rehabilitation, technology
Rehabilitation Science -- Dissertations, Academic -- UF
Genre: Rehabilitation Science thesis, Ph.D.
bibliography   ( marcgt )
theses   ( marcgt )
government publication (state, provincial, terriorial, dependent)   ( marcgt )
born-digital   ( sobekcm )
Electronic Thesis or Dissertation

Notes

Abstract: As our population ages, the number of people with a disability, who live alone, and who wish to remain in their own homes, is increasing. These older individuals may require personal care and/or assistive technology. Home monitoring systems are assistive technologies utilized to track an individual?s activity patterns promoting safety and independence. QuietCare is a home monitoring system embedded in the person?s environment designed to detect changes in the user?s behavior patterns that may indicate an emergency situation. There has been no research on systems like QuietCare relative to whether user needs are being met and if users are satisfied with the system. The purpose of this study was to explore the perceptions and experiences of home monitoring system users and informal caregivers. The sample included 29 QuietCare users and 30 informal caregivers. Through an interview, users completed an assessment of functional capacity and a home monitoring survey. The informal caregivers participated in a telephone interview and completed a survey regarding their perceptions of the QuietCare home monitoring system. Data were analyzed using descriptive statistics. The HMS user sample was mostly female (72%), white (97%), and widowed (83%) with a mean age of 80. The HMS caregivers were mainly female (60%), white (100%), and married (87%) with an average age of 59. Both the users and caregivers were satisfied with QuietCare and felt it was easy to use. Only two of the users experienced emergencies; both were detected and users felt the response time was reasonable. Users and caregivers perceived peace of mind as an advantage of using the system. Overall, users were not concerned about privacy invasion in using the system and felt comfortable being monitored with QuietCare.
General Note: In the series University of Florida Digital Collections.
General Note: Includes vita.
Bibliography: Includes bibliographical references.
Source of Description: Description based on online resource; title from PDF title page.
Source of Description: This bibliographic record is available under the Creative Commons CC0 public domain dedication. The University of Florida Libraries, as creator of this bibliographic record, has waived all rights to it worldwide under copyright law, including all related and neighboring rights, to the extent allowed by law.
Thesis: Thesis (Ph.D.)--University of Florida, 2008.
Local: Adviser: Mann, William C.

Record Information

Source Institution: UFRGP
Rights Management: Applicable rights reserved.
Classification: lcc - LD1780 2008
System ID: UFE0021957:00001

Permanent Link: http://ufdc.ufl.edu/UFE0021957/00001

Material Information

Title: Consumer Response to Home Monitoring A Survey of Older Consumers and Informal Care Providers
Physical Description: 1 online resource (90 p.)
Language: english
Publisher: University of Florida
Place of Publication: Gainesville, Fla.
Publication Date: 2008

Subjects

Subjects / Keywords: elderly, home, monitoring, rehabilitation, technology
Rehabilitation Science -- Dissertations, Academic -- UF
Genre: Rehabilitation Science thesis, Ph.D.
bibliography   ( marcgt )
theses   ( marcgt )
government publication (state, provincial, terriorial, dependent)   ( marcgt )
born-digital   ( sobekcm )
Electronic Thesis or Dissertation

Notes

Abstract: As our population ages, the number of people with a disability, who live alone, and who wish to remain in their own homes, is increasing. These older individuals may require personal care and/or assistive technology. Home monitoring systems are assistive technologies utilized to track an individual?s activity patterns promoting safety and independence. QuietCare is a home monitoring system embedded in the person?s environment designed to detect changes in the user?s behavior patterns that may indicate an emergency situation. There has been no research on systems like QuietCare relative to whether user needs are being met and if users are satisfied with the system. The purpose of this study was to explore the perceptions and experiences of home monitoring system users and informal caregivers. The sample included 29 QuietCare users and 30 informal caregivers. Through an interview, users completed an assessment of functional capacity and a home monitoring survey. The informal caregivers participated in a telephone interview and completed a survey regarding their perceptions of the QuietCare home monitoring system. Data were analyzed using descriptive statistics. The HMS user sample was mostly female (72%), white (97%), and widowed (83%) with a mean age of 80. The HMS caregivers were mainly female (60%), white (100%), and married (87%) with an average age of 59. Both the users and caregivers were satisfied with QuietCare and felt it was easy to use. Only two of the users experienced emergencies; both were detected and users felt the response time was reasonable. Users and caregivers perceived peace of mind as an advantage of using the system. Overall, users were not concerned about privacy invasion in using the system and felt comfortable being monitored with QuietCare.
General Note: In the series University of Florida Digital Collections.
General Note: Includes vita.
Bibliography: Includes bibliographical references.
Source of Description: Description based on online resource; title from PDF title page.
Source of Description: This bibliographic record is available under the Creative Commons CC0 public domain dedication. The University of Florida Libraries, as creator of this bibliographic record, has waived all rights to it worldwide under copyright law, including all related and neighboring rights, to the extent allowed by law.
Thesis: Thesis (Ph.D.)--University of Florida, 2008.
Local: Adviser: Mann, William C.

Record Information

Source Institution: UFRGP
Rights Management: Applicable rights reserved.
Classification: lcc - LD1780 2008
System ID: UFE0021957:00001


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0232bccba75c712e64ec30aa9c857ae25249455c







CONSUMER RESPONSE TO HOME MONITORING: A SURVEY OF OLDER
CONSUMERS AND INFORMAL CARE PROVIDERS




















By

JESSICA LYNN JOHNSON


A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL
OF THE UNIVERSITY OF FLORIDA IN PARTIAL FULFILLMENT
OF THE REQUIREMENTS FOR THE DEGREE OF
DOCTOR OF PHILOSOPHY

UNIVERSITY OF FLORIDA

2008


































2008 Jessica Lynn Johnson
































To my husband, Michael; my son, Solomon; and my parents for all your love and support.









ACKNOWLEDGMENTS

First, I thank my family. I thank my husband, Michael, for his support in every way. I

could not have accomplished this without him. I also thank my son, Solomon, for his patience

and understanding. He was asked to wait numerous times while mom completed something for

school and he did so without much complaint. I thank my mother, Regis, for listening to me vent

and sharing in my triumphs; my step-father, Ed, for his guidance and advice; and my father,

Charles, for his support and encouragement.

I thank my mentor and chair, William Mann, for his guidance and the opportunities he

provided. I thank my committee members (Dr. Linda Shaw, Dr. John Rosenbek, and Dr. Hernan

Vera) for their questions, suggestions, and support.

I thank Janet Warwick for letting me in the door to do this project, Liz Shen for being open

and accommodating, and Terri Fetchel whose help meant so much to me and this project.

Without Terri's efforts and her coordination of the efforts of others, this project would never

have progressed as it did.

Finally, I must thank my rehabilitation science doctoral program (RSD) family. I thank

Megan Witte for making me laugh, for our lunches at Leo's, and helping this experience be one

of the best and most memorable of my life. I thank Rick Davenport for providing words of

inspiration and making me go to the gym. I thank Marieke, Arlene, Dennis, Michael, Roxanna,

Patricia, Bhagwant, and Leigh for leading the way. I thank Moorhouse, Eric, Pey-Shan, and

Sandy for walking with me the rest of the way.









TABLE OF CONTENTS

page

A CK N O W LED G M EN T S ................................................................. ........... ............. .....

LIST OF TA BLES ................. .............................................................. 8

LIST OF FIGURES .................................. .. ..... ..... ................. .9

LIST O F A B B R EV IA TIO N S ......... .. ................................................... ........... ...... 10

A B S T R A C T ............ ................... ............................................................ 1 1

CHAPTER

1 INTRODUCTION ............... .......................................................... 13

B background and Significance ....................................................... .................................... 13
Conceptual Framework for Home M onitoring.................................................................. 14
Introduction to the International Classification of Functioning and Disability (ICF).....14
H om e M monitoring and O lder A dults.................................................................... ...... 16
S u m m a ry ................... ............................................................ ................ 1 7

2 L ITE R A TU R E R E V IE W ......................................................................... ........................ 19

Sm art H om es ................................................. ........................................19
Tiger Place--University of Missouri--Columbia ........................ .......... ....... 20
Gator-Tech Smart House University of Florida........ ..... ............ ..................20
Center for Future Health--University of Rochester..................................................21
AwareHome--Georgia Institute of Technology.............................................................21
B T E xact--U united K kingdom ............................................................. ............... ... ...22
Place Lab--Massachusetts Institute of Technology ......................................................22
MavHome--University of Texas--Arlington ....................................... ............... 23
Telehealth ................................... ...... ............................... 23
Personal Emergency Response System (PERS)................... .......................................26
Q uietC are H om e M monitoring System .......................................................... .....................27
S tu d y P u rp o se ................................................................................................................... 2 8

3 M A TER IA L S A N D M ETH O D S ........................................ .............................................29

In tro du ctio n ................... ...................2...................9..........
Specific A im s and H ypotheses ................................................................................... .... 29
Aim 1: To Determine If an Advanced HMS Meets the Needs of Older Persons with
D disabilities L giving A lone ....................... .......................................................... 29
Aim 2: To Determine Whether the HMS Users and Caregivers Are Satisfied with
the Current System Features and What Changes May Improve the System. ..............29









Aim 3: To Determine the HMS Users' Level of Concern Regarding Invasion of
P privacy in U utilizing a H M S............................................................................ ... .... 29
P a rtic ip a n ts ....................................................................................................................... 3 0
Inclusion Criteria for U ser.......................................................................... ............... 30
Inclu sion C riteria for C aregiver............................................................ .....................30
E exclusion C riteria...................... .............................. .. .. ......... .. ............. 30
Informed Consent .............. .............................................. ........ 30
D ata C o lle ctio n ................................................................................................................. 3 1
H M S U se rs ..............................................................................3 1
H M S user survey .................. ......................................... .. ............
OARS- ADL subset.............. .... ................ ....... .. ......33
H M S C aregiver Survey ......................................................................... ....................33
D ata A analysis ................................................... 34

4 SU R V E Y R E SU L T S ..................................................... ....................................... 35

Survey R response R ates ..................................................... ............... .. ...... 35
H M S U ser and Caregiver M watching ............................................... ............................ 35
User Demographics ........................ ........ .. .... .... ........ .... .... 36
U ser Functional Capacity ......................... ........... .. ........... ... ...... 36
C aregiv er D em graphics ............................................................................. .....................37
H M S Caregiver and U ser R relationship ............................... ................... ................. .... 37
Aim 1: To Determine If an Advanced Home Monitoring System Meets the Needs of
Frail O older A adults Living A lone. ................... ......... .............. .. ........... ...............37
Aim2: To Determine Whether the HMS Users and Caregivers Are Satisfied with the
Current System Features and What Changes May Improve the System. .........................41
Aim 3: To Determine the HMS User's Level of Concern Regarding Invasion of Privacy
in Utilizing a H om e M monitoring System ........................................ ......................... 42
S u m m ary ................... ...................4...................4..........

5 D IS C U S S IO N ........................................................................................................4 7

M ajo r F in d in g s ................... ............................................................................................... 4 7
How QuietCare Has Helped the Users ............................... ...............48
How QuietCare Has Helped the Caregivers ..........................................................49
Perceived Advantages of the QuietCare System by the User ................... ............50
Perceived Advantages of the QuietCare System by the Caregiver .............. ...............51
Perceived Disadvantages of the QuietCare System by the User .............. ............... 52
Perceived Disadvantages of the QuietCare System by the Caregiver .............................53
Recommended Changes to the QuietCare System ................. ................. ..........55
H M S U ser P privacy ............................................................................... 57
IC F M o d e l ...............................................................................5 8
L im itatio n s ................... ...................5...................9..........
F utu re R research ...............................................................60
Implications and Conclusions.................... ............... 61

APPENDIX


6









A H M S U SE R SU R V E Y ................................................................................ .....................63

B MULTIDIMENTIONAL FUNCTIONAL ASSESSMENT OF OLDER ADULTS:
SELF CARE CAPACITY SUBSECTION......................................................72

C H M S CA R EG IV ER SU R V EY ...................................................................... ...................77

L IST O F R E FE R E N C E S ......... .. ............. ....................................... .....................................84

B IO G R A PH IC A L SK E T C H .............................................................................. .....................90













































7









LIST OF TABLES

Table page

4-1 H M S u ser dem ographics.......................................................................... ....................45

4-2 H om e and H M S user facts ............................................................................... ..... .... 45

4-3 HMS users' OARS-ADL subset ratings ........................................ ........................ 46

4-4 H M S caregiver dem ographics......................................... .............................................46

4-5 The relationship of the HMS caregiver to the HMS user they assist.............................46









LIST OF FIGURES


Figure pe

1-1 Home Monitoring Embedded in the ICF Model ............................. ... ............18









LIST OF ABBREVIATIONS

WHO World Health Organization

ICF International Classification of Functioning and Disability

ADL Activities of daily living

IADL Instrumental activities of daily living

HMS Home monitoring system

OARS Older Americans Resources and Services Multidimensional Functional
Assessment Questionnaire









Abstract of Dissertation Presented to the Graduate School
of the University of Florida in Partial Fulfillment of the
Requirements for the Degree of Doctor of Philosophy

CONSUMER RESPONSE TO HOME MONITORING: A SURVEY OF OLDER
CONSUMERS AND INFORMAL CARE PROVIDERS

By

Jessica Lynn Johnson

May 2008

Chair: William C. Mann
Major: Rehabilitation Science

As our population ages, the number of people with a disability, who live alone, and who

wish to remain in their own homes, is increasing. These older individuals may require personal

care and/or assistive technology. Home monitoring systems are assistive technologies utilized to

track an individual's activity patterns promoting safety and independence. QuietCare is a home

monitoring system embedded in the person's environment designed to detect changes in the

user's behavior patterns that may indicate an emergency situation. There has been no research

on systems like QuietCare relative to whether user needs are being met and if users are satisfied

with the system. The purpose of this study was to explore the perceptions and experiences of

home monitoring system users and informal caregivers.

The sample included 29 QuietCare users and 30 informal caregivers. Through an

interview, users completed an assessment of functional capacity and a home monitoring survey.

The informal caregivers participated in a telephone interview and completed a survey regarding

their perceptions of the QuietCare home monitoring system. Data were analyzed using

descriptive statistics.

The HMS user sample was mostly female (72%), white (97%), and widowed (83%) with a

mean age of 80. The HMS caregivers were mainly female (60%), white (100%), and married









(87%) with an average age of 59. Both the users and caregivers were satisfied with QuietCare

and felt it was easy to use. Only two of the users experienced emergencies; both were detected

and users felt the response time was reasonable. Users and caregivers perceived peace of mind

as an advantage of using the system. Overall, users were not concerned about privacy invasion

in using the system and felt comfortable being monitored with QuietCare.









CHAPTER 1
INTRODUCTION

Background and Significance

By 2030, the number of older Americans is expected to nearly double to 70 million and

will comprise 20% of the U.S. population (National Center for Health Statistics, 2007). This

growth in population of older Americans poses a challenge in providing adequate care and

support as some older adults age with or acquire disabilities.

Approximately 7 million older Americans have chronic disabilities (Federal Interagency

Forum on Aging-Related Statistics, 2004). While the rate of disability is decreasing; the number

of Americans over 65 who have chronic disabilities is increasing, due to the rapid growth in

numbers of older adults (Federal Interagency Forum on Aging-Related Statistics, 2004). As

older adults age, they are more likely to acquire a disability (Ostchenga, Harris, Hirsch, Parsons,

& Kington, 2000). For example, 54% of Americans 75-79 have a disability and 16% of them

require assistance; whereas 72% over 80 have a disability and 30% of those require assistance

(Steinmetz, 2006).

The population increase of older adults will also create an increased demand for employees

in the health care industry, which is expected to grow 22% by 2016, compared to 11% for all

other industries combined (Bureau of Labor Statistics & U.S. Department of Labor, 2007). With

the existing shortage of direct care workers, a drastic increase in demand will create a vast

predicament with how to adequately care for older adults (Fleming, Evans, & Chutka, 2003;

Hussein & Manthorpe, 2005; Piotrowski, 2003). It is necessary to consider both how to provide

care and support for older adults with disabilities and where to provide these services.

Most adults over 45 want to stay in their home as long as possible (Bayer & Harper, 2000).

This desire increases with age. Seventy-five percent of people 45-54 wish to remain in their









current home, 83% of those 55-64, 92% of those 65-74, and 95% of those 75 and over (Bayer &

Harper, 2000). Interviews conducted by Tinker & Lansley (2005) confirm this desire of older

adults to remain in their homes.

The ability to age in place may be upset by age-related chronic conditions. However, 82%

of older adults want assistance provided in their home in the event they need help caring for

themselves (Bayer & Harper, May 2000). Much assistance to older adults with disabilities

comes from an informal caregiver (Li, 2005). Informal caregivers are generally spouses (38%)

or children (41%) of the older adult with a disability (Wolff & Kasper, 2006).

With today's society being so mobile, adult children relocating for employment reasons

and older adults often retiring to places with a mild climate, many older adults do not have

children nearby to assume the role of informal caregiver. Nineteen percent of men and 40% of

women over 65 live alone (Federal Interagency Forum on Aging-Related Statistics, 2004). The

percent of older adults living alone increases with age (He, Sengupta, Velkoff, & DeBarros,

2005). The impact of living alone and away from children or other potential sources of informal

care may make aging in place difficult for the older adult with a disability.

Conceptual Framework for Home Monitoring

Introduction to the International Classification of Functioning and Disability (ICF)

The World Health Organization (WHO) International Classification of Functioning and

Disability (ICF) is a classification system for health and functioning (Arthanat, Nochaj ski, &

Stone, 2004; Stucki, 2005). The ICF not only codifies health information, but is also useful in

research for generating hypotheses, planning studies, and creating a common language useful in

collaboration and disseminating information (Jette, 2006; Stucki, 2005).

The ICF model has two main components "Functioning and Disability" and "Contextual

Factors" (Arthanat et al., 2004; Hemmingsson & Jonsson, 2005). These main components are









each further divided into two categories. "Functioning and Disability" is divided into "Body

Functions and Structures" and "Activity and Participation." "Contextual Factors" is divided into

"Environmental Factors" and "Personal Factors."

In classifying home monitoring, the first character would be 'e' because home monitoring

is considered an environmental factor. Environmental factors are the physical, social, and

attitudinal environments in which people live and conduct their lives (WHO, 2001). The

remaining domains coincide with the following codes: body functions = b, body structures = s,

activities and participation = d. These letters are then followed by chapter numbers (first,

second, third, and fourth levels depending on what is being described). These codes may be

followed by a decimal point and a qualifier. The qualifiers range from 1 = no problem to 4 =

complete problem.

Further classification of home monitoring may be more complex because it consists of 2

components. As depicted in Figure 1-1, home monitoring is not only the technology, such as

sensors and servers, but also the people who interact and interpret the data being retrieved to

determine when and how to intervene. Considering the technological side, home monitoring

could be classified under "products and technology," which includes "natural and human-made

products or systems of products, equipment and technology in an individual's immediate

environment that are gathered, created, produced or manufactured" (WHO, 2001). The prefix

would be 'el.' However, it is also reasonable to classify home monitoring under "support and

relationships" when considering the people who are involved in home monitoring and providing

support. "Support and relationships" includes "people or animals that provide practical physical

or emotional support, nurturing, protection, assistance, and relationships to other persons, in their









home, place of work, school or at play or in other aspects of their daily activities" (WHO, 2001).

This type of classification is 'e3.'

If the product and technology route of classification is taken, home monitoring would end

in a final classification of 'e198', which is "products and technology, other specified" (WHO,

2001). However, if the support and relationships route is taken, home monitoring would end in a

final classification of 'e398', which is "support and relationships, other specified" (WHO, 2001).

Figure 1-1 demonstrates the interrelationship of the domains and that a change in one

domain could potentially affect the other domains. This is denoted in the ICF diagram with

bidirectional arrows. Home monitoring attempts to promote health and independence by

intervening through a change in the physical and social environments (Schneidert, Hurst, Miller,

& Ustun, 2003).

Home Monitoring and Older Adults

Home monitoring supports the resident at home by monitoring for unsafe situations, such

as taking medications inappropriately or undesirable temperature inside the home. Home

monitoring also attempts to intervene quickly when a problem arises. For example, a fall for an

older adult living alone is a potentially life threatening situation, home monitoring may decrease

the risk of not being found in time after a fall.

Home monitoring may not affect body structures, but it may have an impact on body

functions. WHO (2001) defines body functions as "physiological and psychological functions of

the body." Home monitoring may help improve physiological functions by reminding the

resident to take medications appropriately. For example, medication compliance may be

achieved by utilizing a home monitoring system that tracks medication dispensing and alerts the

caregiver when medications are consumed inappropriately. If an older adult takes the right dose









of their medication at the right time, they will be better able to maintain health and body

functions than when following an erratic schedule.

Home monitoring may also affect psychological functioning through tracking medication

compliance and providing alerts when non-adherence occurs. A person with bipolar disorder

will demonstrate better psychological functioning when following an appropriate medication

regimen (Colom & Vieta, 2002; Lew, Chang, Rajagopalan, & Knoth, 2006). Home monitoring

may also impact a resident's psychological functioning by providing reassurance that someone is

watching out for them. Home monitoring may reduce anxiety and increase sense of security, as

has been shown in tele-homecare (Lamothe, Fortin, Labbe, Gagnon, & Messikh, 2006; Tsuji,

Suzuki, & Taoka, 2003).

Home monitoring is not utilized to increase independence with an activity, but observes

the resident to ensure certain activities are completed within specific parameters. Home

monitoring may ensure the resident has exited the bedroom by 10 am or taken their morning

medications by 1 am. If these activities have not been completed, the home monitoring service

may call and prompt the resident to perform the activity or contact the caregiver to cue the

resident.

Personal factors may affect how well the person accepts the home monitoring service.

Older people may not be as accepting of technology as young adults, or previous experience with

technology may contribute to acceptance of home monitoring. Other personal factors that may

influence the outcome of home monitoring include: gender, race, fitness, lifestyle, habits,

education, coping styles, behavior pattern, and upbringing (WHO, 2001).

Summary

Home monitoring may be a beneficial tool in assisting older adults to remain independent

and safe in their homes as long as possible and avoid premature assisted living or nursing home









placement. With growth in the numbers of older adults, the increased demand for direct care

workers, and the desire for older adults to age in place, new methods for assisting older adults in

their homes are needed. The QuietCare system represents the next generation home monitoring

and emergency response system, but research is lacking to describe how older adults use the

system and if it meets their needs. This study will describe older adults' perceptions of the

QuietCare system, explore whether their needs are being met, and offer suggestions for

improvement in home monitoring systems.


Health Condition


Body Functions Activity
and Structures






Environmental
Factors


S0' Participation


Personal
Factors


Figure 1-1. Home Monitoring Embedded in the ICF Model.









CHAPTER 2
LITERATURE REVIEW

This review focuses on the use of home monitoring to help community living older adults

maintain independence and age in place. Home monitoring to help older adults age in place may

range from something as complex as a smart home or as simple as a Personal Emergency

Response System (PERS).

Smart Homes

A smart home is an environment constructed with various technological applications and

devices to assist residents in performing daily activities. The idea of a smart home has been

around since the early 1980's, with the goal of helping a person live more comfortably and

conveniently (Stefanov, Bien, & Bang, 2004). Research on smart home technology is now being

conducted worldwide. This technology has the potential to maximize independence and help

older adults age in place. Allen (1996) describes the smart house as holistic, being directed by a

central control unit and interpreting the user's needs. The smart home is then able to execute

actions to respond to the user's needs.

Smart homes have the potential to restore functional status and slow decline in older

adults. Smart homes have an extensive list of possible benefits because of the integrated

systems, and added benefit of potentially being connected to remote health care providers and

caregivers. To realize the potential of smart homes, many research teams are creating and

improving smart home systems. In addition, the user's interaction and perception of the

technology is being studied to maximize user satisfaction and create useful and usable

applications.









Tiger Place--University of Missouri--Columbia

Tiger Place is a senior living community near the University of Missouri-Columbia (MU)

campus. At Tiger Place, MU is using technology and developing smart apartments to help older

adults age in place and promote independence. Through focus groups, MU found older adults

are receptive to technology (Rantz et al., 2005). Sixty-six percent of their participants used e-

mail and surfed the Internet. In addition, the older adults were willing to install technology in

their homes if it was reliable, able to detect emergencies, affordable, non-intrusive, and required

minimal action by the user.

Older adults felt they would benefit from smart home technologies that could provide

emergency help, assistance with visual and hearing problems, prevention and detection of falls,

temperature monitoring, automatic lighting, monitoring of physiological parameters, stove and

oven safety control, property security, intruder alarm, reminder announcements of upcoming

appointments or events, and information on adverse drug events and contraindications (Demeris

etal., 2004). Many of these applications are for monitoring rather than altering a task to make it

easier.

Gator-Tech Smart House University of Florida

The Gator-Tech Smart Home (GTSH) is a free-standing single family smart home near the

University of Florida campus. The purpose of the GTSH is to develop smart home technologies

that assist older adults in maximizing independence, maintaining quality of life, and aging in

place. The home is equipped with a smart front door that allows the user to identify the visitor

and open the door remotely. The smart mailbox announces when the mail has arrived,

preventing unnecessary walks to the mailbox. The lights, blinds, and television are also voice

controlled, eliminating the need to move about the home and physically interact with these

devices. A SmartWave utilizes radio frequency identification (RFID) technology to









automatically program the microwave for a frozen meal and plays a video helping the user

sequence through the task of putting the meal safely into the microwave.

The floor of the Gator-Tech Smart home is equipped with pressure sensors and integrated

into the home's main computer to track the resident's movement throughout the home. With

software programming, this system will potentially be able to ask the resident if they are well

upon detecting the absence of movement for an unusual length of time. If the resident does not

answer or says 'no, I am not okay', the home would call for help. Researchers at the Gator-Tech

smart house are also working on cognitive prompting applications to assist an individual with

mild dementia in sequencing through activities of daily living, such as washing hands or oral

hygiene.

Center for Future Health--University of Rochester

The University of Rochester's Center for Future Health is attempting to monitor people's

behavior patterns and figure out what an altered pattern means (University of Rochester Medical

Center, 2005). This is important because many smart home projects are tracking behavior and

using a deviation from a "normal" pattern as a potentially dangerous situation. The Center for

Future Health is also trying to monitor physiological parameters wirelessly and communicate the

information to a call center with the goal of preventing and detecting disease early (Knecht,

2001). They monitor vital signs, gait, sleep, behavior pattern, and exercise.

AwareHome--Georgia Institute of Technology

Georgia Tech's AwareHome is used to create smart technologies for older adults to age in

place (Sanders, 2000). The goal of the AwareHome is to allow older adults to be proactive

regarding their health care, assist them in their daily activities, increase opportunities for social

communication, and ensure safety and well-being (Mynatt, Melenhorst, Fisk, & Rogers, 2004).

The AwareHome uses the gesture pendant, a wireless pendant with both a camera and motion









sensors. The pendant responds to the resident's hand movements. Some of the commands the

resident can give are to close the blinds, lock the doors, open the front door, dim the lights, or

adjust the thermostat temperature. In interviews, older adults felt they did not need the

technology now, they were afraid of becoming dependent on technology and losing abilities, and

viewed the technology as something that would compensate for a disability, rather than standard

features in future homes.

Georgia-Tech is also working on the "digital family portrait" that provides a graphical

view of the resident's activity level to a remote caregiver. The "digital family portrait" provides

the caregiver with information regarding the outside weather and the inside temperature (Mynatt

et al., 2004). Movement between rooms is displayed in 15 minute increments and background

shading indicates day or night. Regarding home monitoring, the older adults were interested if it

was necessary, but not before. They were agreeable to 1 or 2 family members viewing their

information, but no more. They did not want people to know more information than was

necessary to maintain their independence.

BT Exact--United Kingdom

In the UK, BT Exact is working on a project to track a resident's well-being and alert a

caregiver when a problem is detected (Brown, Hine, Sixsmith, & Garner, 2004). The researchers

monitor 6 activities: leaving and returning home, visitors, preparing and eating food, sleeping

patterns, personal appearance, and leisure activities. To monitor the activities, sensors are

strategically placed throughout the home. In the future, the person's activity pattern could be

sent to a call center and monitored (BT Exact, 2005).

Place Lab--Massachusetts Institute of Technology

MIT's Place Lab is a one-bedroom condo with hundreds of sensors (Housen Research

Group, 2005). The goal is to track activities and interactions with the environment. MIT is able









to monitor a participant's activity in their own home before and after their stay at Place Lab

using a portable system (Housen Research Group, 2005). Some of the areas of study at Place

Lab are proactive health (encourage healthy diet, exercise, and medication adherence), disease

management, and accident prevention, which are all areas that could help an older adult age in

place (Housen Research Group, 2004).

MavHome--University of Texas--Arlington

MavHome is a smart home designed to learn its inhabitant's behavior patterns and

automate certain tasks, such as lighting and temperature (Cook, Youngblood, Heierman,

Gopalratnam, Rao, Litvin, & Khawaja, 2003). The home is also attempting to monitor a

resident's health status and alert to any long or short term changes. The refrigerator would be

able to identify its contents and reorder groceries on-line. The microwave would search for

recipes on-line and the home entertainment system would automatically record programs the

resident might enjoy.

MavHome has a reminder system that can be triggered if the resident deviates from normal

routine or wants to know about upcoming activities (Cheek, Nikpour, & Nowlin, 2005). These

reminders can be helpful for taking medications correctly, locking doors, and turning off bath

water. Residents can automate some of the home functions, such as climate control, water

temperature, and lighting. Once the house learns the user's preferences, it can automate those

settings. If the house provides a reminder and the elder does not respond, it could automate

those activities such as shutting off the bath water, turning off the stove, and locking the doors.

Telehealth

Smart homes and telehealth technology can be used to collect and track data on the home's

residents. The data may be monitored by a caregiver, a company, or a health care center. The

caregiver may wish to ensure their family member is taking medications correctly and getting









about the home. The monitoring company may monitor the resident for emergencies or potential

risks and intervene upon detection by calling a local caregiver. The health care center may track

specific health parameters to keep a chronic condition under control or look for certain signs to

catch ailments early. An overall goal of home monitoring and telehealth is to keep the resident

safe and healthy in the home for as long as possible. These interventions also help maximize

independence and may allow the individual to age in place.

Tele-homecare is used to remotely monitor individuals' health parameters and provide

medical services to high-risk patients and those unable to travel. Typically, the tele-homecare

remote monitoring system has a base unit that communicates with a care coordination center at a

hospital or clinic using telephone lines. The base unit may have peripheral attachments to

monitor a variety of health parameters including: medication compliance, blood pressure, weight,

pulmonary function, glucose level, and more. Mann et al (2007) reported the most common uses

for home health monitoring were for blood pressure, blood sugar, and pulse.

Tele-homecare allows health care providers to intervene quickly when measurements are

beyond the desired range. Individuals are able to sit in the comfort of their own home while

health care providers conduct medical monitoring procedures in their offices. Older adults have

a strong acceptance of home health monitoring devices (Mann, Marchant, Tomita, Fraas, &

Stanton, 2002) and 80% are satisfied with their home health monitoring systems (Mann et al.,

2007).

Tele-homecare enhances feelings of safety and security and increases confidence for the

user (Sixsmith, 2000). Home health monitoring devices also relieve personal and family worry

(Mann et al., 2002). For those who do not use home health monitoring systems, most cite lack of

perceived need and cost as the reasons for non-use (Mann et al., 2007).









Tele-homecare has shown promise in decreasing home health care costs, as well as cost

savings through the elimination or reduction of providers' travel costs (Binder, Hoffman-

Wellenhof, Salmhofer, Okcu, Kerl, & Soyer, 2007; Finkelstein, Speedie, & Potthoff, 2006;

Litzinger, Rossman, Demuth, & Roberts, 2007). Moreover, numerous telemonitoring programs

have reported decreased emergency room visits, reduced hospital admissions and hospital bed

days of care, and decreased hospital readmission rates (Frantz, Colgan, Palmer, & Ledgerwood,

2002; Jerant, Azari, & Nesbitt, 2001; Stensland, Speedie, Idelker, House, & Thompson, 1999).

Because tele-care is becoming more widely used, companies like Cnow, Inc. are emerging.

Cnow Inc. provides residents with a way to get face-to-face help over the Internet at all times

(Cnow Inc., 2006). If a home health company or health care center wishes to set up a tele-health

program, Cnow will take care of all the equipment and offer 24 hour technical support. Cnow

provides 2-way real time video for customers.

In one home tele-health intervention study, older adults utilized either a hand-held in-home

messaging device; a telemonitor with 2 way audio-video and peripherals that monitored blood

pressure, heart rate, weight, oxygen saturation, and heart and lung sounds; or a video phone with

2-way audio-video communication (Chumbler, Mann, Wu, Schmid, & Kobb, 2004). A control

group received usual care. The home tele-health group improved significantly on all outcome

measures, including instrumental activities of daily living (IADLs), FIM- functional

independence measure, and MMSE- mini mental state exam. The control group declined

significantly in IADL function and cognition as measured by the FIM. Other outcome measures

remained stable for the control group. The control group and the tele-health group were

significantly different from each other at 12 months on the IADL and FIM-motor (functional

independence). The tele-health group also differed significantly on the FIM- cognitive, but not









the MMSE (cognitive) measure. This study indicates home tele-health programs have the

potential to improve function and keep frail older adults independent and safe at home.

Personal Emergency Response System (PERS)

A study of people found incapacitated in their homes reported the average amount of time

someone spends down before being found is 15 hours (Gurley, Lum, Sande, Lo, & Katz, 1996).

Of those who are down and unable to call for help, 28% die. The difference in time spent down

before being found is crucial. The average down time for someone found alive is 2 hours,

compared to 18 for those found dead (Gurley et al., 1996). One way older adults can try to

prevent becoming stranded in their homes is by using a home monitoring system.

Personal emergency response systems (PERS) typically consist of an emergency call

button worn on a pendant or bracelet, a base unit, and an emergency response center (ERC).

When the older adult has an emergency, the button is pressed and a signal is transmitted

wirelessly to the base unit. The base unit then places a phone call to the ERC. The ERC

communicates with the older adult through the base unit and calls a responder if help is needed.

Fall risk is the most common reason older adults subscribe to a PERS (Mann, Belchior,

Tomita, & Kemp, 2005). Subscribers want to know if they fall or require assistance that help is

immediately available. Subscribers may even forego adult children as responders in order to

utilize a close neighbor (Porter, 2003).

Older adults report the most important way their PERS helps them is by giving them a

feeling of security and decreasing the worry of family members (Mann et al., 2005). However,

their sense of security may be disturbed if they experience false alarms that result in a responder

entering their home unexpectedly or hear an unfamiliar voice in their home when the ERC is

trying to communicate with them through the base unit (Porter, 2003). False alarms may

contribute to the older adult not wearing the pendant or canceling the service.









Less than 50% of PERS subscribers wear their pendant when alone at home (Levine &

Tideiksaar, 1995). Besides false alarms, older adults are often concerned with how the pendant

looks to others. In a study by Porter (2005), one of the older women took her pendant off

because the button could be seen under her clothes. Others removed their pendants when people

came to visit, feeling they did not need it unless alone.

Cost, lack of awareness, and perceived lack of need are the most common reasons an older

adult does not obtain a PERS (Bernstein, 2000; Mann et al., 2005). PERS are typically paid for

out of pocket by the user and their family (Bernstein, 2000). In Porter's study (2003), 5 women

obtained PERS after a recommendation from a home care nurse or case manager and the other 3

obtained PERS at the request of family members. None of the women obtained the device

because they were aware of it and independently determined they needed it.

These types of emergency response systems require the person to wear the device, to be

conscious and able to press the button. If the older adult forgets to wear the device or chooses

not to wear the device and falls, they may be unable to call for help. To alleviate some of these

problems, home monitoring systems such as QuietCare have been developed.

QuietCare Home Monitoring System

QuietCare is a passively activated emergency response and behavior tracking system. The

QuietCare system utilizes 5-6 strategically placed motion sensors in the older adult's home, the

ADL Communicator (base unit), and the QuietCare Server. The motion sensors are installed in

the kitchen, bathroom, bedroom, and near medications to monitor the resident's activity. The

sensors wirelessly transmit information about the resident's movement to the ADL

Communicator. The ADL Communicator stores the information and transmits it via telephone

lines to the QuietCare Server every 2 hours. When the server recognizes changes in the









resident's behavior, it alerts the response center and the user's caregiver. Caregivers may login

to a secure website and view the older adult's activity charts at any time.

During the first 2-3 weeks following QuietCare installation, the system learns the user's

typical activity patterns. Once the QuietCare system has baseline ranges of normal behavior

patterns, the system is able to determine when the user's pattern is abnormal. The QuietCare

system monitors the user's following types of behavior:

Waking and leaving the bedroom by their normal time

Exiting within a certain amount of time after entering the bathroom

Visiting the medication area at appropriate times

Entering the kitchen regularly for meals

Moving around the home in their normal activity range

Visiting the bathroom within the range of their normal number of visits

The QuietCare home monitoring system may provide a method of responding to

emergencies and possibly early detection of illness without user action. However, there has been

no research on home monitoring systems like QuietCare, in terms of user needs and satisfaction.

Study Purpose

The purpose of this study was to examine user needs and satisfaction of the most currently

advanced, commercially available, home monitoring system, QuietCare. User sense of security

and privacy in using this home monitoring system was also investigated.









CHAPTER 3
MATERIALS AND METHODS

Introduction

In this chapter the specific aims and hypotheses are presented, the sampling criteria and

processes are explained, the data collection methods are discussed, and the data analysis is

presented.

Specific Aims and Hypotheses

Aim 1: To Determine If an Advanced HMS Meets the Needs of Older Persons with
Disabilities Living Alone.

Hypotheses:

(a) The HMS detects emergencies and alerts the call center and/ or caregiver within a
reasonable time frame according to the user and informal caregiver.

(b) The HMS user does not experience emergencies that go unanswered by the HMS
and call center.

(c) The HMS caregiver does not experience significant stress in relation to using the
HMS.

Aim 2: To Determine Whether the HMS Users and Caregivers Are Satisfied with the
Current System Features and What Changes May Improve the System.

Hypotheses:

(a) HMS users and caregivers perceive the system as easy to use and are satisfied
with the system.

(b) HMS users and caregivers recommend additional features and changes to the
system to improve the home monitoring system.

(c) HMS users and caregivers experience advantages and disadvantages of using the
system.

Aim 3: To Determine the HMS Users' Level of Concern Regarding Invasion of Privacy in
Utilizing a HMS.

Hypotheses:

(a) HMS users are comfortable with the way QuietCare monitors them.









(b) HMS users have minimal concern of privacy invasion in using the QuietCare
system.

Note: Emergencies are defined as situations when the user is in danger and unable to

obtain assistance (e.g. a fall, medical emergency).

Participants

Participants were recruited from a QuietCare distributor in central Florida. The distributor

gathered the list of current users and caregivers who met the inclusion criteria and contacted

them to determine their interest in participating in the study. The distributor determined 41 HMS

users and 42 HMS caregivers met the criteria described below. All were invited to participate in

the survey.

Inclusion Criteria for User

* Over 60 years of age
* Lives alone in the community
* Has used the home monitoring system for at least 3 months
* Able to provide informed consent
* Ability to speak and understand English

Inclusion Criteria for Caregiver

* Cares for a home monitoring system user
* Able to provide informed consent
* Able to speak and understand English

Exclusion Criteria

* Presence of any health problems or disabilities that would interfere with the ability to
participate effectively in the interview process, such as severe hearing or speech
impairment based on the investigators clinical impression

Informed Consent

If the potential participant wished to participate in the study, the distributor advised that

their contact information would be given to the investigator at the University of Florida. The









investigator contacted the participants by phone, explained the study, answered any questions,

and obtained informed consent.

Data Collection

Of the 41 HMS users who were invited to participate in the survey, 29 accepted and were

part of the study. Of the 42 HMS caregivers who were invited to participate in the study, 30

agreed to participate and became part of the study.

HMS Users

Seven HMS users were interviewed in-person with the remaining 22 interviewed via the

telephone. The interviewer administered the HMS user survey and the Activities of Daily Living

section of the Older Americans Resources and Services Multidimensional Functional

Assessment Questionnaire (Fillenbaum, 1988). The interviews lasted an average of 39 minutes

and were scheduled at the participant's convenience.

HMS user survey

The HMS user survey was implemented to understand perceptions of the QuietCare user:

the advantages/ disadvantages in using the system, what they would change about the system,

and concern for privacy while being monitored. The survey consisted of open ended, closed

ended and partially closed-ended questions. Questions were assembled using guidelines from

Dillman's "Mail and Internet Surveys: The Tailored Design Method" (Dillman, 2006). The

guidelines Dillman (2006) suggests are as follows:

* Ensure each question requires an answer
* Form questions so respondents may provide an accurate, ready-made answer easily
* Form questions so the responder can recall and report past behaviors easily
* Refrain from asking the responder for information they may be unwilling to reveal
* Refrain from using vague quantifiers, such as "on a scale of 1-10"
* Choose simple rather than specialized words
* Be succinct
* Use complete sentences









* Develop mutually exclusive response categories

The home monitoring survey ends with demographic questions including items such as

age, gender, marital status, and type of residence.

Once the survey was assembled, it was distributed to two individuals for expert review.

The suggested changes to the survey included:

* Create an Access database and organize the survey to easily transfer responses from the
paper survey into an Access form.

* Ask demographics last as they are the least interesting to the participant

* Never give respondent more than 4 options in a list, with seniors not more than 3

* Ask them about the last month, more than that may be difficult to remember

* Break down Likert scales, rather than giving them 4 categories start with 2. For example,
rather than "Are you very satisfied, somewhat satisfied, somewhat dissatisfied, or very
dissatisfied?" ask "Are you satisfied or dissatisfied?" and then ask "Are you very satisfied
or somewhat satisfied?"

* Most interesting questions go first, most threatening or embarrassing go towards the end

A final suggestion was to break down the survey questions considered too difficult for the

respondents. For example, one question asked the respondent to estimate how long it takes

QuietCare to respond to emergencies. It was recommended to start by asking how many times in

the last month the individual had to use QuietCare, when was the last time it was used to respond

to an emergency, and how long did it take to get a response.

Once the survey was reconstructed following the advice of the expert reviewers, it was

administered to the first 2 participants. The data from these surveys was reviewed to determine

which questions were confusing, superfluous, on-target, and missing. The survey was finalized

and administered to the remaining participants.









OARS- ADL subset

The OARS- ADL subset is a 15 item inventory assessing the amount of assistance the

individual requires to complete Instrumental Activities of Daily Living (IADL), such as

housekeeping and shopping, as well as Basic Activities of Daily Living (BADL), such as bathing

and dressing (Fillenbaum, 1988). To establish criterion validity, the ADL subset was compared

to physical therapist ratings of individuals' performances of ADLs (Fillenbaum, 1988). The two

measures were correlated using Kendall's tau (tau = .83, p < .001) and Spearman's rank order (r,

= .89, p < .001)) correlations (Fillenbaum, 1988). Interrater reliability was established on the

ADL subset by having 11 raters score 30 participants. Then the interclass correlation coefficient

was derived from an ANOVA performed on the subset (ICC= .865, p < .001) (Fillenbaum,

1988).

In scoring the OARS-ADL subset, the individual's capacity to perform ADLs is

categorized by one of five categories (Fillenbaum, 1988).

* Excellent ADL capacity- can perform all ADLs without assistance and with ease

* Good ADL capacity- can perform all ADL s without assistance

* Mildly impaired ADL capacity- some help is required with 1-3 ADLs

* Moderately impaired ADL capacity- requires assistance with at least 4 ADLs, but can get
through a single day without help. Or regularly requires help with meal preparation

* Severely impaired ADL capacity- needs help each day but not necessarily throughout the
day or night with many ADLs

* Completely impaired ADL capacity- needs help throughout the day and/ or night to carry
out ADLs

HMS Caregiver Survey

Prior to initiating the interview, the researcher explained the study and obtained informed

consent from the participants. The interviews were scheduled at the caregiver's convenience and









lasted an average of 22 minutes. All 30 caregivers were interviewed by telephone and

administered the HMS caregiver survey.

The survey items were designed to obtain caregivers' perceptions on what it is like to be a

caregiver for a person using the QuietCare system, what they would change about the system,

and what works well for them. As with the HMS user survey, the HMS caregiver survey

consisted of open ended, closed ended and partially closed ended questions. It was also formed

using Dillman's (2006) guidelines for developing survey questions. The survey ends with

demographic questions including items such as age, gender, marital status, and type of residence.

The expert review procedure discussed for the HMS user survey was also applied to the HMS

caregiver survey.

Data Analysis

Surveys were recorded by hand during each interview and then entered into an Access

database. Queries were executed to analyze variables of interest. All analyses were done with

quantitative data. In Chapter 5, the qualitative information gathered was used to compliment the

quantitative data. All data were analyzed using descriptive statistics (measures of central

tendency and frequencies).









CHAPTER 4
SURVEY RESULTS

This chapter covers the survey response rate, demographic information and ADL capacity

for HMS users, caregivers' demographic information, and the results for each hypothesis.

Survey Response Rates

The sample consisted of 29 HMS users and 30 HMS caregivers. The survey response rate

for HMS users was 70.7% and the response rate for HMS caregivers was 71.4%. These response

rates are high compared to other studies that have utilized telephone interviews for data

collection. In a study by Blieszner, Ronberto, and Singh (2001), the researchers used telephone

interviews to assess service use by older adults and achieved a 50.2% response rate. Another

study utilized a telephone survey to assess quality of life in older adults with chronic illnesses;

the response rate was 47% (Bayliss, Ellis, & Steiner, 2007). A study used a telephone survey to

compare ethnicity and reluctance to use the emergency room and achieved a 56% response rate

(Reime, Tu, Tzianetas, & Ratner, 2007).

HMS User and Caregiver Matching

Not all of the HMS users and caregivers were pairs. Some of the HMS users had

caregivers who were unable to participate. Examples for non-participation of the caregiver

included the caregiver's lack of time or the caregiver was a professional from an agency such as

hospice. Likewise, some HMS caregivers cared for QuietCare subscribers who were unable to

participate. Some examples were the subscriber was hard of hearing, unable to speak, or

experienced short term memory loss. Of the total sample, 17 HMS users matched 20 HMS

caregivers. Three HMS users had two caregivers each who were interviewed as part of the

study. The remaining users and caregivers did not have counterparts.









User Demographics

The home monitoring system users' demographic information was obtained from the HMS

User Survey. As seen in Table 4-1, the HMS user sample was mostly female (72%), white

(97%), and widowed (83%) with a mean age of 80. In addition, the majority (52%) of the HMS

users had at least one child living within 20 miles of their home.

The majority (55%) of the HMS users resided in single family homes and lived in their

homes for an average of 14 years as can be seen in Table 4-2. In addition, HMS users subscribed

to QuietCare for an average of 7 months. Most of the HMS users were introduced to the system

by their adult child (31%) or through church (31%).

User Functional Capacity

The HMS users' functional ADL capacity was assessed with the OARS- ADL subset

(Fillenbaum, 1988). As seen in Table 4-3, 55% of the HMS users were able to perform all ADLs

without assistance. Twenty-eight percent of the HMS users reported mildly impaired ADL

capacity, the ability to perform all but 1-3 ADLS and able to prepare their own meals. Seven

percent reported moderately impaired ADL capacity, regularly needing assistance with at least 4

ADLs or with meal preparation. Finally, 10% of the HMS users reported severely impaired

ADL capacity, requiring assistance each day with many ADLs.

In 2004, 27% of Medicare participants over 65 had difficulty with 1 or more ADLs and

those plus another 14% had difficulty with IADLs (U.S. Administration on Aging, 2006). A

remaining 59% of Medicare participants over 65 did not have difficulty with IADLs or ADLs,

which is close to the 55% reported in the HMS user sample if those with excellent and good

ADL capacity are combined.









Caregiver Demographics

The caregivers' demographic information was obtained from the HMS Caregiver Survey.

As seen in Table 4-3, the HMS caregivers were mainly female (60%), white (100%), and married

(87%). The HMS caregivers' average age was 59, which closely resembles the average age of

60 for caregivers in a meta-analysis conducted by Pinquart and Sorenson (2007). Likewise, the

1999 Informal Caregiver Survey reported the average age of caregivers as 62.5 (Wolff & Kasper,

2006). Considering gender of the caregiver, the HMS caregiver sample resembles that of an

AARP and the National Alliance for Caregiving study (2004), which reported caregivers in the

U.S. as 61% female and 39% male. Only 27% of the HMS caregivers still had children at home.

The number of children at home ranged from 0-6.

HMS Caregiver and User Relationship

As seen in Table 4-5, an adult child (73%) was the most common HMS caregiver.

According to the Family Caregiver Alliance (2001), the adult child is the most common

caregiver (41%), followed by another relative (27%) and a spouse (23%) for a person over 65.

However, the meta-analysis on physical health of caregivers by Pinquart and Sorenson (2007)

indicated that 50% of the caregivers were spouses and 38% were adult children. Since the HMS

user sample only included people who lived alone, few (if any) spousal caregivers were

expected.

Aim 1: To Determine If an Advanced Home Monitoring System Meets the Needs of Frail
Older Adults Living Alone.

To determine if the HMS was meeting the needs of community based older adults living

alone, HMS users and caregivers were asked several questions from their respective surveys.

The questions posed to the user included the number of emergencies experienced in the last

month, if the system detected all emergencies, and if help came in a reasonable amount of time.









The caregiver was also asked if the person for whom they provide assistance experienced any

emergencies within the last month, if emergencies were detected, and if a responder was

contacted within a reasonable amount of time.

Finally, the caregiver was asked several questions concerning the burden of being a

responder. The questions posed involved whether the system has helped the caregiver,

consideration of discontinuing the service, frequency of checking the Internet to track the

individual, system ease of use, and the frequency of false alarms.

* Hypothesis la: The home monitoring system detects emergencies and alerts the call

center and/ or caregiver within a reasonable time frame according to the user and informal

caregiver. When the HMS users were asked if they had an emergency within the last month, 1

of the 29 users reported they had. When asked about the last time they had an emergency, only

one additional person experienced an emergency during the time in which they had been using

the HMS. The emergency occurred 3 months prior to the interview. Both emergencies were

detected by the QuietCare system. The types of emergencies experienced were a fall and a

medical emergency. The users felt QuietCare responded to their emergencies in a reasonable

amount of time.

None of the caregivers reported caring for a user who experienced an emergency within the

last month. None of the caregivers matched the two HMS users who experienced emergencies.

When the users were asked if the QuietCare system has helped them, 21 of the 29 (72%)

stated that it has helped them. The ways in which the HMS has helped the participants are

discussed in Chapter 5.

* Hypothesis Ib: The home monitoring system user does not experience emergencies

that go unanswered by the home monitoring system and call center. When the HMS users









were asked if they had experienced an emergency in the last month that the QuietCare system did

not detect, none of the 29 users reported having an undetected emergency. Likewise, none of the

caregivers interviewed reported the individual they monitor experienced an emergency that went

undetected within the last month.

In addition, the HMS users were asked if the system makes them feel more or less secure.

Twenty-four of the 29 HMS users stated the QuietCare system makes them feel "more secure."

Of those 24, 18 stated the system makes them feel "much more secure." Two of the 24 said the

system makes them feel "a little more secure" and the other two said "just more secure." The

remaining 5 HMS users stated that the system does not make them feel more secure or less

secure.

Where the system makes the majority of people feel more secure, it does not make them

feel more or less independent. When the HMS users were asked if the system makes them feel

more independent or less independent, 18 of the 29 (62%) stated neither. The other 11 stated the

system made them feel "more independent." Of those 11, 7 stated it made them feel "much more

independent" and 4 said "a little more independent."

* Hypothesis Ic: The home monitoring system caregiver does not experience significant

stress in relation to using the home monitoring system. When asked if the QuietCare system

has helped them, 29 of the 30 (97%) of the HMS caregivers stated that it has helped them. The

one participant who said that it hadn't helped stated her mother was very independent and she

doesn't worry about her.

When the HMS caregivers were asked if they had ever considered discontinuing the

QuietCare service, 11 of the 30 caregivers indicated they had considered discontinuing the









service. The most common reason given for consideration of discontinuing the service was lack

of need.

When the HMS caregivers were asked how often they check on their friend or relative

using the QuietCare website, 2 caregivers do not check the e-mail or website, but entirely rely on

the call center to telephone them if there is an emergency. Seventeen caregivers only check the

daily e-mail report to view the user's activity level. Eight people check the website once a day to

once a week, as well as the daily e-mail report. Two people check the website 2-3 times per day

and read the daily e-mail report. One person says she checks several times a day because she is

on the computer constantly anyway.

When the HMS caregivers were asked if the QuietCare system was easy or difficult to use,

29 of the 30 caregivers stated that it was "easy to use" and one did not answer this item. Of the

29 that answered, 26 stated that it was "extremely easy to use," two stated it was "somewhat easy

to use," and one stated it was "just easy to use."

When the HMS caregivers were asked how often they receive false alarms, 10 of the 30

caregivers experienced one false alarm within the last month. Five of the false alarms were

because the user was out of town and the system was not placed on vacation mode. Two of the

caregivers received false alarms because of too much bathroom activity. In both instances, the

user had company and the system was reporting the activity of everyone inside the residence.

One alarm was for a possible bathroom fall, but the user was actually spending more time in the

bathroom because she was cutting her hair. Two alerts were for low meal preparation because

the user had gone out for a meal. None of the false alarms were because the system was

reporting inaccurate data.









Aim2: To Determine Whether the HMS Users and Caregivers Are Satisfied with the
Current System Features and What Changes May Improve the System.

Participants were asked questions to determine if the system was easy versus difficult to

use and report their satisfaction with the system. In addition, participants were interviewed to

determine what aspects of the system were advantageous, if there were disadvantages to having

the system, and if there were things the participants would change.

* Hypothesis 2a: The home monitoring system users and caregivers perceive the system

as easy to use and are satisfied with the system. When the HMS users were asked if

QuietCare was easy or difficult to use, 100% felt the home monitoring system was "easy to use."

When asked if it was very easy to use versus somewhat easy to use, 100% stated that the system

was "very easy to use." Again 29 of the 30 HMS caregivers thought the home monitoring

system was "easy to use" and one did not answer. Of the twenty-nine that thought the system

was easy to use, 26 thought the system was "very easy to use," 2 thought it was "somewhat easy

to use," and 1 just stated it was "easy to use."

Of the 29 HMS users surveyed, 26 stated they were "satisfied" with the home monitoring

system and 3 did not respond. Of the 26 who were satisfied, 24 were "very satisfied" and 2 were

"somewhat satisfied." Of the 30 HMS caregivers interviewed, 29 were "satisfied" with the

system and one did not answer. Of the 29 that were satisfied with the home monitoring system,

28 were "very satisfied" and one was "somewhat satisfied."

When the HMS users were asked if they had ever considered discontinuing QuietCare,

only 5 of the 29 (17%) had. The most common reason given for possibly discontinuing the

system was lack of need.

* Hypothesis 2b: Home monitoring system users and their caregivers recommend

additional features and changes to the system to improve the home monitoring system.









When asked what they would change about the HMS system or what were things they wish the

system did that it doesn't do now, 8 of the 29 users had suggested changes or additions to the

home monitoring system to improve its capabilities. About twice as many (17 out of 30)

caregivers had suggested changes or additions. The changes recommended are discussed in

Chapter 5.

* Hypothesis 2c: The QuietCare users and their caregivers experience advantages and

disadvantages of using the system. When asked about the advantages of having the HMS, 27

of the 29 users reported advantages of having the home monitoring system. The most common

advantages were peace of mind for the user and peace of mind for the family. All of the

caregivers reported advantages of having the home monitoring system. Again, the most

frequently reported advantage was providing peace of mind. The advantages of the system are

discussed further in Chapter 5.

When asked about the disadvantages of having the HMS system, only 9 of the 29 users

identified disadvantages of having the system. Cost was the most commonly identified

disadvantage. Thirteen of the 30 caregivers reported disadvantages of the home monitoring

system. Again cost appeared to be the most common disadvantage. Disadvantages are discussed

further in Chapter 5.

Aim 3: To Determine the HMS User's Level of Concern Regarding Invasion of Privacy in
Utilizing a Home Monitoring System.

To determine whether the HMS user was concerned about privacy invasion using the

HMS, the HMS users were asked whether or not they were comfortable being monitored in the

way QuietCare works. They were also asked if they were comfortable with their caregivers

being able to see their activity information. Finally, the users were asked if they were concerned









about their privacy being invaded using the system and if they trusted their information was

adequately protected on the website.

* Hypothesis 3a: Users are comfortable with the way QuietCare monitors them. When

asked if they were comfortable or uncomfortable with being monitored in the way in which

QuietCare works, all of the users reported they were "comfortable" with the way QuietCare

monitors them. When asked if they were very comfortable or somewhat comfortable, 27 of the

29 users stated they were "very comfortable" and 2 of the 29 stated they were "somewhat

comfortable."

When asked if they were comfortable or uncomfortable with those who can view their

activity information being able to see their information, 26 of the 29 stated they were

"comfortable." Three users did not answer the question. Of the 26 who were comfortable, 25

were "very comfortable" with people being able to view their information and 1 was "somewhat

comfortable."

* Hypothesis 3b: Users have minimal concern of privacy invasion in using the

QuietCare system. When the HMS users were asked if they were concerned about their privacy

being invaded using the QuietCare system, 28 of the 29 users stated they were not concerned.

When the one HMS user was asked whether she was very concerned or a little concerned about

her privacy being invaded, the user said she was "a little concerned."

When the HMS users were asked if they believed their activity information was adequately

protected on the QuietCare website, 26 of the 29 users stated they believed their information was

adequately protected. Three users were unsure and did not wish to answer yes or no. When

asked if they trusted that only authorized people were able to view their information, again 26 of









the 29 users stated they believed only authorized people could view their information. The same

3 people did not answer the question.

Summary

The HMS detected all of the users' emergencies; no emergencies went undetected. Most

of the HMS caregivers have never considered discontinuing the system, they check the daily e-

mail to view the user's activity, and they do not receive false alarms. Both the HMS users and

caregivers were satisfied with the system and found it very easy to use. Most of the users and all

of the caregivers identified advantages of having the system and less than half identified

disadvantages of having the system. Overall, the users were comfortable with the way QuietCare

monitors them and did not have concerns of privacy invasion.









Table 4-1. HMS user demographics
Frequency (%) or Mean(SD) Range
Age 80(10.1) 61 >89
Gender
Female 21 (72%)
Male 8 (28%)
Race
Black 0
White 28 (97%)
Hispanic 0
Asian 1 (3%)
Other 0
Educational Level
High School (9-12) 9 (31%)
Some College 11 (38%)
Bachelor's Degree 4 (14%)
Master's Degree 2 (7%)
Ph.D/MD 3 (10%)
Marital Status
Widowed 24 (83%)
Married 1 (3%)
Divorced 3 (10%)
Single 1 (3%)
Other 0 (0%)
No. of Children 2.5 (1.5) 0- 6
No. of Children w/in 20 miles .9 (1.2) 0 5

Table 4-2. Home and HMS user facts
Frequency (%) or Mean (SD) Range
Type of Home
Single Family 16 (55%)
Multi-unit Bldg. (condo) 5 (17%)
Mobile Home 8 (28%)
Semi-detached (duplex) 0 (0%)
Other 0 (0%)
Years in Home 14.4 (15.6) .5 56
Months of HMS Use 7.3 (5.3) .25 24
Referred to HMS by:
Adult child 9 (31%)
Church 9 (31%)
Hospice 4 (14%)
Friend 3 (10%)
MD 1 (3%)
Independently 1 (3%)
Other 2 (7%)










Table 4-3. HMS users' OARS-ADL subset ratings
ADL Capacity Frequency (Percent)
Excellent ADL Capacity 6 (21%)
Good ADL Capacity 10 (34%)
Mildly Impaired ADL Capacity 8 (28%)
Moderately Impaired ADL Capacity 2 (7%)
Severely Impaired ADL Capacity 3 (10%)

Table 4-4. HMS caregiver demographics
Frequency (%) or Mean (SD) Range
Age 59.1(8.9) 38-69
Gender
Female 18 (60%)
Male 12 (40%)
Race
White 30 (100%)
Black 0 (0%)
Asian 0 (0%)
Hispanic 0 (0%)
Other 0 (0%)
Educational Level
High School 4 (13%)
Some college 9 (30%)
Bachelor's Degree 11 (37%)
Master's Degree 6 (20%)
Ph.D./ M.D. 0 (0%)
Marital Status
Married 26 (87%)
Divorced 2 (7%)
Single 1 (3%)
Widowed 0 (0%)
Other 1 (3%)
No. of Children 2.8 (1.7) 0-8
Children at Home 8 (27%)

Table 4-5. The relationship of the HMS caregiver to the HMS user they assist
Caregiver Relationship to User Frequency (Percent)
Adult Child 22 (73%)
Daughter/ Son- in-Law 3 (10%)
Sibling 3 (10%)
Other 2 (7%)









CHAPTER 5
DISCUSSION

The purpose of this study was to explore the most currently advanced, commercially

available home monitoring system, QuietCare. I sought to determine users' and informal

caregivers' perceptions of the QuietCare system, in terms of satisfaction and ease of use. I

examined the users' sense of security and privacy in using this home-monitoring device. The

research method used was a survey. I felt this method was useful to provide an overview of how

the QuietCare system was working for the older adults and informal caregivers. The compilation

of survey results did provide a picture of the general perception of the home monitoring system.

The first part of this chapter includes a discussion of the major findings of the study,

followed by study limitations, areas for future research are suggested, and study conclusions are

presented.

Major Findings

Very few of the HMS users ever experienced an emergency while using the system. The

two HMS users who had experienced emergencies used the system for 8-12 months. Even

though the others had not been rescued from an emergency, they did feel that the QuietCare

system helped them. Likewise none of the caregivers reported that the person they look after had

experienced an emergency, but almost all confirmed the system helped them.

Initially, I sought to describe relatively objective measures of the usefulness and

effectiveness of the HMS. I focused part of the survey on the number of emergencies

experienced, the circumstances around the emergencies, the response time of the responder, and

the outcome of the situation. However, the results indicated that while these measures are

important, the subjective results of how the participants felt about the system were also essential.

The subjective results provide insight into how the system is working for the participants as well.









If the participants felt the system was not reporting accurate data or there were a number of

problems with the system, the participants may have expressed more negative feelings regarding

the system. The following sections discuss some of the more subjective findings.

How QuietCare Has Helped the Users

When asked how the QuietCare system has helped them, 76% of the users who stated the

system helped them said it was because it provides them and their families with peace of mind.

A sampling of their quotes follows.

I have peace of mind knowing my daughters will be alerted if there is no movement (in my
home).

Knowing it is here gives me confidence that someone is looking out for me.

It provides (my children) comfort, even with their busy lives they can check the website.

Three participants also stated the system increased or improved communication with their

children. One stated, "It has improved communication with my children. It makes them more

aware of me and they check on me."

One participant recounted an event when the system noticed he was utilizing the bathroom

more frequently, the user subsequently discovered a medical problem. While this was not

technically an emergency, as the increased bathroom use was a warning that came through an e-

mail rather than an urgent call to the caregiver, it still was seen as a benefit.

The same user stated the system allows him to check on his medication compliance.

Occasionally, he will visit the QuietCare website to see if he consumed his medication. At times

he experiences confusion or memory impairment and the website acts as a back up for him.

One HMS user reported the system saved her life. The individual was home after recent

surgery. She experienced difficulty breathing and remained seated in her living room chair,









which was unusual. The system triggered an alert because her activity level was too low. Her

caregiver was notified and contacted her physician, who detected a pulmonary embolism.

How QuietCare Has Helped the Caregivers

When asked how the QuietCare system has helped them, almost all of the HMS caregivers

stated it has given them peace of mind. The caregivers appreciate being able to read the daily e-

mail report or check the website and know their loved one is all right. Some of their comments

are below.

It continually gives me reassurance as to what she is doing. She has attempted suicide a
couple times. This allows me to see that she is taking her medications and functioning.
We live 30-40 miles apart. It is a comfort to me. She has said she doesn't need it, but my
brother and I told her that we do.

Even when we were in South America we could get information. It is interesting to know
what is happening. I have peace of mind knowing he has something more than a daily call
from my sister. Once there wasn't any movement because he was gone on a trip and they
called. So I know it responds.

I have a sense of peace about her being there alone.

One caregiver explained how the system improved her quality of life, "It has helped my

quality of life. Sometimes the mother-in-law/ daughter-in-law relationship is not the best. This

allows me to check the computer to see that she is okay without having to call her all the time."

Another caregiver also appreciated the reduction in demand to telephone, "The daily e-mail

summarizes the last 24 hours. I like this because of the unobtrusiveness. I don't have to call her

all the time to know she is okay."

Another interesting way the system has helped caregivers is that it allows them to check on

their relative even when they cannot place a phone call. One caregiver stated, "We called her a

couple times and couldn't get through. But we can look on the computer and see she is okay."

One caregiver moved the system with her father when he changed residences. Moving the

system with him was beneficial because they were able to help him adjust to the move. "It









makes us more comfortable. Since we moved him he has a different routine. It allows us to see

that he is adjusting well and lets us know if we need to tweak things. Like when he first moved,

his days were thrown off and he was sleeping until noon. The QuietCare system let us catch

that." Another caregiver also uses the system proactively to watch for potential problems. "The

QuietCare system helped us develop a pattern for mom. She has urinary issues; it helps us know

if she has a UTI coming on."

One caregiver appreciated the ability to handle problems from out of state, "I could tell he

wasn't taking his medications appropriately. Then once his AC quit and the temperature was

over 90 degrees. I was able to deal with both of those problems remotely because I knew what

was going on."

Perceived Advantages of the QuietCare System by the User

While 21 of the users stated the QuiteCare system had helped them, 27 pointed out

advantages of having the system. This may be because the system could be helpful for the

family or other individuals, but not them personally. Ninety-three percent of the users who

identified advantages described peace of mind as a main advantage. Some of their quotes

follow.

The system is insurance. I am (age), alone, and in good shape, but you never know. My
family is (out of state) and it gives them peace of mind. It provides a sense of security.

My children don't have to worry anymore. They can go on the computer and check on me.

It is good to know you are not going to lie on the floor for hours without anyone finding
you.

I know they monitor and watch what I do. My children can see that I am doing all right.
Before I had the system I passed out for 11 hours on the bathroom floor and I know that
wouldn't happen now.









Another advantage noted was the efficiency of getting information. One user stated, "It

lets the nurses know how I am doing without them bugging me and it is efficient for them as

well."

Another advantage identified was that it was non-invasive. The system is non-invasive

because it does not utilize cameras, but also because it does not require the user to wear anything

or to interact with the equipment. Below are HMS users' statements.

I had (a push button system), but I was more capable then. Now I would forget to wear the
necklace.

The advantages are the communication the children have and that it is non-invasive.

Perceived Advantages of the QuietCare System by the Caregiver

All of the caregivers reported advantages of the system and 80% described peace of mind

as a main advantage. Some of the caregivers' statements follow.

The security of knowing if she needs help, she can get some in a reasonable time. I can't
be with her 24 hours a day, but I can know that everything is okay.

Peace of mind for the family and the person using it. That is the main thing.

The fact that you can go on with your own life and not have to worry about the aging
parent (is an advantage). It gives me peace of mind, day or night they can get in touch
with me.

Six of the caregivers also identified efficiency as an advantage of the system. They can get

a picture of the person's day quickly from the daily-e-mail report and know that if an emergency

arises they will be called. Their quotes are included below.

It is an extra security alert with the system if something goes wrong you are quicker to
notice it.

I don't have to call every morning.

It keeps me from having to call her; you see it so you know everything is okay.

Gives people a means to check on the necessities. If I look on the web, I can see if she is
missing medications or meals.









The normal range is enough detail. If her pattern is a little off, I don't get a (warning). I
am not bombarded with (warnings).

The biggest (advantage) is that I can see her whole day.

Three of the caregivers stated its non-intrusive nature as an advantage. One caregiver

explained, "It is a non-intrusive way of monitoring her activity and basic well-being." Another

stated, "There are no cameras. He is very sensitive to that. The sensors are also hidden

discretely, which is important or he would fiddle with them."

Some other advantages mentioned were that it lets the caregiver know when extra services

may be needed in the user's home. It also has an advantage over the push button systems in case

the user fell and was unconscious. Finally, one caregiver stated the cost was not bad for what it

delivers.

Perceived Disadvantages of the QuietCare System by the User

Nine of the users identified disadvantages of which cost was the most frequently

mentioned. Some of their statements follow.

The cost was too much for my friend.

The price may be hard to handle on some budgets.

I have it for a trial; otherwise I couldn't afford to pay for it. I can't see how it helps me
that much. I have people that check on me daily.

Another disadvantage mentioned by the users was related to setting their system on

"vacation." In Chapter 4, the caregivers reported 5 false alarms in the last month due to the user

being gone from the home and the system not set to vacation mode. This may have been more

prevalent because the month before their interviews was the holiday season. More people than

usual may have been out of town and forgot to set their system to vacation. A sampling of the

HMS users' comments follow.

If I don't let them know I am going out of town, it can cause problems.









If I forget to put myself on vacation (and go out of town), it scares everyone.

To get into the system on the website is complicated when putting it on vacation.

A couple of participants thought the system required a large amount of equipment in the

house. One stated, "It is a lot of equipment in the house, but if I am going to have the system I

need the equipment. Houses these days have a lot of equipment." The other stated, "The base

system takes a lot of room on the shelf. It has to be near the phone and mine is in the kitchen."

One HMS user reported he does not like receiving a low meal preparation warning when

he eats out. He stated, "If I am taken out for dinner, there will be a low meal preparation

warning. So I have to wave my hand in front of the refrigerator before I leave." A low meal

preparation warning would not produce an emergency alert to his caregiver, but may be more of

an annoyance to him simply knowing low meal preparation was reported when he actually ate.

A couple of HMS users were concerned about the system's accuracy. Their comments

follow.

Once I was taking cold medication every 4 hours and it reported none had been taken. I
also do a lot of cooking and at times it has a meal preparation warning. Then one time it
said I didn't get up and I had been up since 5 am taking care of my dogs.

I was concerned this morning because if I am not up by ten it is supposed to go off. I used
the bathroom at 5 and slept late and it didn't go off.

Perceived Disadvantages of the QuietCare System by the Caregiver

When asked what the disadvantages of having the system were, 13 of the 30 HMS

caregivers identified some disadvantages. Like the HMS users, the HMS caregivers mentioned

cost most frequently. Some of their comments are below.

The price is too steep for people on a fixed income.

Everything costs way too much. It is out of reach for those who are elderly and retired at a
lower income. The price is difficult for most seniors who need it. Those who can afford it
go to a retirement community with all levels of care or have personal care.









The cost is high. It should be about 30-50 dollars a month.

Depending on income, the cost could be prohibitive for some.

Another disadvantage a few caregivers mentioned was the lag time between when an event

occurs and when they are notified. A couple caregivers had concerns about the time between

when a fall occurs in other areas of the home besides the bathroom and when an alert would be

sent. Bathroom falls are detected and dealt with differently than falls in other areas of the house.

However, in a study by Gill, Williams, & Tinnetti (2000) looking at environmental hazards and

nonsyncopal fall risk, more participants experienced falls in the living room, bedroom, and

kitchen than in the bathroom. Some of the HMS participants concerns are expressed below.

Should he fall, I wish he didn't have to wait for 2 hours for help. A button to push may be
nice.

If something happens, there may be a 3-5 hour lag before I find out about it.

A couple of the caregivers stated the website could use more explanation and is sometimes

slow to respond. One caregiver stated the sensitivity may be a disadvantage because it doesn't

actually tell if the user swallowed the medication. However, to see if the user swallowed the

medication may necessitate the use of cameras and some participants identified the lack of

cameras as an advantage.

Like an HMS user, a caregiver stated a disadvantage of the system as its reporting of low

meal preparation when her mother goes out to dinner on Sundays. Another caregiver stated a

disadvantage as "there are some false alarms like if the phone is off the hook, but I still want to

know about it so it can be fixed."

Another caregiver identified the competing use of the telephone line between the

QuietCare system and the home computer as a disadvantage since his mother is on the computer

often and it causes problems with the QuietCare system. "When her computer is on, it ties up the









phone line and that causes problems with the system. My mom is always on the computer, it is

her life. I guess she should put another phone line in."

A final comment was that use of the system may require a lifestyle change, "It requires a

bit of a lifestyle change. For example, my mom keeps her blood pressure medication on her

nightstand. The rest of her medications are in the kitchen, which have the sensor by them. For

me to actually see that she took her blood pressure medication, she would have to move it and

change her routine."

Recommended Changes to the QuietCare System

Five HMS caregivers and 3 users suggested changes related to putting the system on

vacation. One caregiver would like it made clearer during the installation process of the need to

put the system on vacation when the person is out of town. The others would like the process of

putting the system on vacation made easier. Some of their comments are presented below.

I wish my mom could notify them easier when she is going on vacation. It has to be done
by computer.

Improve the vacation setting. The computer isn't very smart about it. If say she is coming
back at noon, I will get morning alerts for decreased activity.

Other suggestions related to the ability to turn the system to a different setting when they

go out for a meal or have company over.

When she has company we get alerts for too much bathroom use. It would be nice if there
was a way to let the system know there were visitors.

Maybe a way he could override the system if he was going out to breakfast.

Have an easy way to turn the system off when I go out.

Another aspect caregivers and users recommended to change were increased range of

monitoring (i.e. yard) and better ability to detect falls in the rest of the house. Some of their

comments follow.









Place a sensor low to the ground in some rooms to catch a fall.

Have something to alert them if I fell in the house. I know it does if I fall in the bathroom,
but I would like it to alert for the entire house.

If I fell in the house, how could they tell I have fallen?

Increase the distance to monitor out in the yard or connect somehow to a cell phone. If I
go for a walk, I have to grab the phone and push the button.

Maybe have a push button system attached to it.

A few people would like to have additional sensors in the house or on the outside doors.

Sensors are usually located in rooms the resident frequents regularly. Sensors may not be in

every room of the house, such as extra bedrooms or rarely used family rooms. Participants'

comments follow.

He has 2 bathrooms- one he showers in and the other he uses the commode. It would be
nice for us to know which one he has gone to. Also, it would be nice if the sensor at the
door could tell us if he actually went out the door rather than by the door.

I wonder if sensors should be added to his Florida room. Sometimes he goes out there.

I wish it had a sensor to tell when I go out the door into the garage. I could be passed out
in the garage and they wouldn't know for a long time.

Two caregivers suggested adding the ability to determine that medication was actually

taken and the user didn'tjust go near the medication area. Medication areas may have a sensor

in a cupboard or box with medications located inside or a sensor may be placed under a cabinet

and over a counter where the medications are located. The caregivers' comments are below.

I wish the medication and food intake were more exact, but that balances with
intrusiveness.

Something to make sure she has taken her medications and not just gone by them.

Other participants offered some unique suggestions. One caregiver had concerns that her

loved one would wander from home and suggested to "incorporate a GPS into the system. I am

looking into one that is an armband now." Another had experiences a false alert when the HMS









user had gone out of town and not placed the system on vacation. The emergency services

arrived at the home and were met by the caregiver. The caregiver explained the HMS system to

the rescuer, who had never heard of the system and was very interested in learning about it. This

caregiver suggested education for the local 911 services to make them aware of the HMS system.

Another caregiver suggested, "More definitive instructions on how to enter the program on-line

and enter (the user's) parameters. I am not sure they are set appropriately for my mom. Like the

wake time may be an hour too long." One participant suggested improving the marketing of the

system, "It is geared at older women. They should also aim at men who have disabling

conditions like MS or ALS." Finally, a participant suggested the addition of a heart monitor for

use at night in case a medical problem occurred while in bed. "At night it doesn't tell if you have

died, gone in a coma, or had a stroke. It wouldn't know if anything was wrong with me from

8pm to 9am. Maybe include a wrist bracelet to monitor the heart."

HMS User Privacy

Seven of the 29 users described feeling a bit apprehensive about the system at first because

of privacy issues. A sampling of their comments is presented below.

At first I felt perplexed and uncomfortable because I am a private person.

I sort of felt self-conscious, but it wore off.

I was not sure about it. I wanted to know more. I sort of felt like it was a spy thing.

I was a bit concerned because I wasn't sure what it would show. Now I am okay with it
because it just shows the time I went in and not a picture of me in the bathroom.

Even though some HMS users initially had reservations because of privacy, all of the users

reported that they were comfortable with the way the system monitors them and of those who

responded all were comfortable with their caregivers viewing their information. The three users,

who did not answer whether or not they were comfortable with their caregivers viewing their









information, did not answer because they were unfamiliar with the website and felt they could

not answer the question or did not have caregivers who checked the website. These are the same

3 users who did not answer as to whether they believed their activity information was adequately

protected on the website.

Only one participant reported having a little concern of her privacy being invaded in using

the QuietCare system. This user stated that nobody checks her activity information on-line

because they don't want to be bothered with it. However, there was an incident where she

unplugged her phone line for a period of time because she didn't want to be bothered. This

resulted in the system sending an alert to her neighbor, who then came over to make sure she was

all right.

ICF Model

When looking at the ICF model in relation to home monitoring, we see the implementation

of home monitoring in the user's environment may impact the other domains of the model. For

example, the home monitoring system may discover a health issue before it becomes serious or

life threatening. This allows the person to remain active and participate in home and societal

situations. This relationship as described earlier is denoted by the bidirectional arrows in the

model (Figure 1-1).

For the ICF to adequately represent the relationships in this study, it may need to be

expanded. The introduction of the HMS into the user's environment has the potential to impact

the user in various domains, but also may impact the caregiver. In this study, the caregivers

expressed greater peace of mind with the monitoring of the user. One caregiver stated, "The fact

that you can go on with your life and not have to worry about the aging parent (is an

advantage)." Perhaps the peace of mind allows the caregiver to become more active and

participate in other home and societal functions.









Limitations

While a survey is a useful method to provide an overview of a topic, it has limitations.

The major limitation is that it relies on self-report. Deception, poor memory, and

misunderstanding of items may lead to inaccurate data. As for deception, people are more likely

to give truthful answers to sensitive topics on a paper questionnaire than during a telephone

survey (Bourque & Fielder, 2003). Some of the questions asked about sensitive material such as

emergencies experienced and physical abilities. As an example of memory impacting the study,

participants were asked how long they had used the HMS and at times could only provide a

rough estimate because they were not able to remember the exact month the system was

installed. Finally, the item regarding if the system made them feel more or less independent was

unanswered 62% of participants because respondents felt it did not apply. This is discussed

further below.

Even though 71% of the potential participants responded to the survey, the non-response

by some may enter bias into the study. Those who chose not to respond may have felt negatively

towards the system and been uncomfortable with expressing themselves. In addition, non-

response occurred to some of the items within the surveys, which could have introduced bias.

For example, 62% of the respondents did not say whether the system made them feel more or

less independent, but refused to answer because they felt the question did not apply to them.

Others answered this question based on the choices provided, but if given the choice of "neither"

or "does not apply" may have picked a different answer. Non-response to this item could also

make it appear as if the system really does make people feel more independent because 100% of

those who responded to the item stated that it makes them feel more independent.

Another limitation of the study was the relatively short amount of time the HMS users had

utilized the QuietCare system. Had the average length of use been longer, more emergency









experiences might have been reported and discussed. In addition, the participants might have

expressed more ideas to improve the system. The average length of use was 7 months and the 2

individuals who experienced emergencies used the system for 8-12 months.

Due to the relatively small sample size and obtaining the sample through one distributor,

the results may not generalize to the overall population of QuietCare users/ caregivers or other

HMS users/ caregivers.

Future Research

While a survey provided an overview of the users and caregivers perceptions of the

QuietCare system, an in-depth qualitative study would also be an appropriate method for future

research. A qualitative study may provide additional insight into important constructs to study

and assess when examining the user and caregiver perceptions of the HMS.

In addition, some of the unique findings of this study brought insight into future areas of

research. Not only should the home monitoring of frail, older adults be further explored, but also

the home monitoring of younger people with chronic disabilities or illnesses as well as those

with mental health disorders. Based on results of this study, I would expect these populations to

also benefit from home monitoring and behavioral tracking.

Another area for exploration is the acceptance of home monitoring among different racial

groups. Twenty-eight of the 29 HMS users were white. When the distributor was asked about

the predominantly white customers, they responded that one African-American customer used

the system for a few months and then had it removed from the home. They were unsure why

minorities are not as likely to subscribe to the HMS.

In this study, users completed the OARS-ADL subset so a description of their functional

abilities could be obtained. In the future, a functional measure could be used to help describe

when the system is most beneficial or no longer enough.









Recently, assisted living facilities in various parts of the nation have been installing the

QuietCare system. Future research may explore how the facilities are using the system. Another

interesting area would be to compare variables of interest (i.e. quality of life, quality of care)

between a group of residents in assisted living who use the QuietCare system and a group who

does not.

Finally, it would be beneficial to determine if increased length of use with the HMS

provides more information on responding to emergencies and other aspects of the system. Also

community-based QuietCare users could be compared to community-based older adults who do

not utilize home monitoring on various outcome measures, such as functional ability and

hospitalization.

Implications and Conclusions

As illustrated in the findings of this study, the HMS users and caregivers were satisfied

with the system and found it easy to use. It has provided both the users and the caregivers with

peace of mind knowing if something were to happen in the home, the caregiver would be

notified in a reasonable amount of time. The HMS also provided the caregiver with necessary

information about the user's day and activities while still allowing the user to maintain a

comfortable level of privacy.

The findings of this research suggest the HMS system is meeting the users' and caregivers'

needs. The HMS system has detected the emergencies which have occurred and has alerted

users and caregivers to other potential problems allowing them to intervene. While very few of

the users ever experienced an emergency and required assistance from the system, nearly all

participants stated the HMS has helped them.

A home monitoring system such as QuietCare may be a solution for people who forget to

wear, or refuse to wear, the pendant needed for an actively operated emergency response system.









However, the HMS explored in this study was more than an emergency response system in that

several participants were using it to track behaviors and subsequently prevent potential problems.

In that regard, this system may be a more powerful tool to help an older adult age in place than a

system that solely provides a method of calling for help in an emergency.









APPENDIX A
HMS USER SURVEY

1. When did you have QuietCare installed?

month year

2. Who told you about QuietCare? (Examples: daughter/ son, friend, doctor)


3. At first how did you feel about getting QuietCare?





4. Why did you get QuietCare?





5. Has QuietCare helped you?

Yes (continue below) No (Go to #8)

A. How has QuietCare helped you?





6. What kinds of things do you expect QuietCare to help you with?





7. Have you ever used a personal emergency response system, such as Lifeline?

Yes (continue below) No (Go to #6)

A. When did you get the personal emergency response system?

month year









B. How long did you use it?

For months) or years)

8. Before subscribing to QuietCare, did you consider any other alternatives to using

the QuietCare system?

Yes (continue below) No (Go to #7)

A. What were they?



9. How many times in the last month did you have an emergency and need help?

times (If '0', go to question #12)

A. Did QuietCare respond to all emergencies within the last month?

Yes (Go to #10) No (continue below)

B. What types of emergencies did QuietCare miss?







10. When was the last time you used QuietCare to respond to an emergency?





A. What type of emergency was it?









B. About how long did it take for someone to respond to your emergency

using the QuietCare system?

Hours Minutes

C. In your opinion, was the response time fast enough?

Yes No

11. In the past month, has QuietCare called for help when none was needed?

Yes (continue below) No (Go to #17)

A. How many times in the past month has this happened?

times

B. Why do you think this happened?








12. Is the QuietCare system easy or difficult to use?

Easy (Go to A) Difficult (Go to B)

A. Is it very easy or somewhat easy to use?

Very easy to use Somewhat easy to use

B. Is it very difficult or somewhat difficult to use?

Very difficult to use Somewhat difficult to use

13. Does QuietCare make you feel more secure or less secure?

More (Go to A) Less (Go to B)

A. Does QuietCare make you feel much more secure or a little more secure?

Much more secure A little more secure









B. Does QuietCare make you feel much less secure or little less secure?

Much less secure A little less secure

14. Does QuietCare make you feel more independent or less independent?

More (Go to A) Less (Go to B)

A. Does QuietCare make you feel much more independent or a little more

independent?

Much more independent A little more self-confident

B. Does QuietCare make you feel much less independent or a little less

independent?

Much less independent A little less independent

15. Have you ever considered discontinuing QuietCare?

Yes (continue below) No (Go to #18)

A. Why have you considered discontinuing QuietCare?





16. What are some advantages of having the QuietCare system?







17. What are some disadvantages of having the QuietCare system?









18. What would you change about QuietCare?


19. Is there anything you wish QuietCare did that it does not do now?

Yes (continue below) No (Go to #22)

A. What do you wish QuietCare did?







20. Would you say you are satisfied or dissatisfied with QuietCare?

Satisfied (Go to A) Dissatisfied (Go to B)

A. Are you very satisfied or somewhat satisfied with QuietCare?

Very satisfied Somewhat satisfied

B. Are you very dissatisfied or somewhat dissatisfied with QuietCare?

Very dissatisfied Somewhat dissatisfied

21. Have visitors ever commented on the system?

Yes (continue below) No (Go to #24)

A. What comments have you heard?









22. Are you comfortable or uncomfortable with your activity being monitored in the

way QuietCare works?

Comfortable (Go to A) Uncomfortable (Go to B)

A. Are you very comfortable or somewhat comfortable with your activity

being monitored in the way QuietCare works?

Very comfortable Somewhat comfortable

B. Are you very uncomfortable or somewhat uncomfortable with your

activity being monitored in the way QuietCare works?

Very uncomfortable Somewhat uncomfortable

23. Do you know about the website that displays your activity information to people

who are authorized to view it?

Yes No

24. Have you seen the website that displays your activity information?

Yes No

25. Do you ever go on the website yourself to view your information?

Yes No

26. What things are you most interested in on the website?





27. Who has access to your activity information on the QuietCare website?









What kinds of information can they see?


29. Are you comfortable or uncomfortable with those who can access your activity

information being able to view it?

Comfortable (Go to A) Uncomfortable (Go to B)

A. Are you very comfortable or somewhat comfortable with those who can

access your activity being able to view it?

Very comfortable Somewhat comfortable

B. Are you very uncomfortable or somewhat uncomfortable with those who

can access your activity being able to view it?

Very uncomfortable Somewhat uncomfortable

30. Are you concerned about your privacy being invaded in using the QuietCare

system?

Yes (Go to A) No (Go to #29)

A. Are you very concerned or a little concerned about your privacy being

invaded?

Very concerned A little concerned

31. Do you believe your activity information is adequately protected on the QuietCare

website?

Yes No

32. Do you trust that only the authorized people are able to view your information?









Yes No

33. How old are you?

Years old

34. Gender: Male Female:

35. Would you describe yourself as African American, Caucasian, Hispanic, Asian, or

another race?


36. What level of education did you complete?

Grade school (k-6) Some college Doctorate/ MD

Middle school (7-8) Bachelor's degree

High school (9-12) Master's degree

37. Are you married, widowed, divorced, single, other?

Married widowed divorced single

other

38. How many children do you have?

Children

39. How many of your children live within 20 miles of your home?

Children within 20 miles

40. Do you own or rent your home?

Rent Own

41. What type of a home do you live in? For example, a single family home, mobile

home, condo, duplex, etc.

Single family house Multi-unit building (apt/ condo)









Mobile home

Other

42. How long have you lived there?


Semi-detached home (duplex/ town-home)



years









APPENDIX B
MULTIDIMENTIONAL FUNCTIONAL ASSESSMENT OF OLDER ADULTS: SELF CARE
CAPACITY SUBSECTION

Now I would like to ask you about some of the activities of daily living, things\ that we all need to

do as part of our daily lives. I would like to know ifyou can do these activities in ilthint any help

at all, or ifyou need some help to do them, or ifyou can't do them at all. (BE SURE TO READ

ALL ANSWER CHOICES IF APPLICABLE IN THE QUESTIONS BELOW TO THE

RESPONDENT)

Instrumental ADL

1. Can you use the telephone?

2 without help, including looking up numbers and dialing;

1 with some help (can answer the phone or dial operator in an emergency,

but need a special phone or help in getting the number or dialing); or

0 are you completely unable to use the telephone?

not answered

2. Can you get to places out of walking distance...

2 without help (drive your own car, or travel alone on buses, or taxis);

1 with some help (need someone to help you or go with you when

traveling); or

0 are you unable to travel unless emergency arrangements are made for a

specialized vehicle like an ambulance?

Not answered

3. Can you go shopping for groceries or clothes (ASSUMING SUBJECT HAS

TRANSPORTATION)









2 without help (taking care of all shopping needs yourself, assuming you

had transportation);

1 with some help (need someone to go with you on all shopping trips); or

0 are you completely unable to do any shopping?

Not answered

Can you prepare your own meals...

2 without help (plan and cook full meals yourself);

1 with some help (can prepare some things but unable to cook full meals

yourself; or

0 are you completely unable to prepare any meals?

Not answered

Can you do your housework...

2 without help (can clean floors, etc);

1 with some help (can do light housework but need help with heavy work);


0 are you completely unable to do any housework?

Not answered

6. Can you take your own medicine...

2 without help (in the right dose at the right time)

1 with some help (able to take medicine if someone prepares it for you and/

or reminds you to take it); or

0 are you completely unable to take your medicines?

not answered


4.


5.









7. Can you handle your own money?

2 without help (write checks, pay bills, etc);

1 with some help (manage day-to-day buying but need help with managing

your checkbook and paying your bills); or

0 are you completely unable to handle money?

not answered

Physical ADL

1. Can you eat...

2 without help(able to feed yourself completely);

1 with some help (need help with cutting etc); or

0 are you completely unable to feed yourself?

Not answered

2. Can you dress and undress yourself?

2 without help (able to pick out clothes, dress and undress self);

1 with some help; or

0 are you completely unable to dress and undress yourself?

Not answered

3. Can you take care of your own appearance, for example combing your hair and

(for men) shaving...

2 without help;

1 with some help; or

0 are you completely unable to maintain your appearance yourself?

Not answered












4. Can you walk...

2 without help (except from a cane)

1 with some help from a person or with the use of a walker, or crutch, etc.;

or


0 are you completely unable to walk?

Not answered

Can you get in and out of bed...

2 without help or aids;

1 with some help (either from a person or with the aid of some device); or

0 are you totally dependent on someone else to lift you?

Not answered

Can you take a bath or shower...

2 without help;

1 with some help (need help getting in and out of the tub, or need special

attachments on the tub); or

0 are you completely unable to bathe yourself?

Not answered

Do you ever have trouble getting to the bathroom on time?

2 No

0 Yes

1 have a catheter or colostomy

Not answered


5.










6.


7.









If 'YES' ask:

a. How often do you wet or soil yourself (either day or night)?

1 Once or twice a week

2 Three times a week or more

Not answered

8. Is there someone who helps you with such things as shopping, housework,

bathing, dressing, and getting around?

1 Yes

0 No

not answered

If 'YES', ask 'a' and 'b'.

a. Who is your major helper?

Name Relationship

b. Who else helps you?

Name Relationship









APPENDIX C
HMS CAREGIVER SURVEY



1. Why do you think your relative or friend decided to get the Quiet Care system?





2. What were the alternatives to getting the Quiet Care system?





3. Has the Quiet Care system helped you?

Yes (Go to A) No (Go to # 4)

A. How has the QuietCare system helped you?





4. Have you ever thought about discontinuing Quiet Care?

Yes (Go to A) No (Go to #5)

A. Why have you considered discontinuing QuietCare?

Lack of need

Cost

False alarms

Other, what were the other reasons?



5. How many times per day or week do you check on your relative or friend using

the QuietCare website?









times per day or

times per week

6. In the past month, have you received alerts for an emergency from QuietCare?

Yes (Go to A) No (Go to #7)

A. How often do you receive emergency alerts?

times per day or

times per week or

times per month

B. When was the last time you received an emergency alert from QuietCare?





C. What type of emergency was the alert for?





D. What was the outcome of the situation?





E. Do you feel that QuietCare alerted you to the emergency within a

reasonable amount of time?

Yes No

F. How long did it take for QuietCare to alert you to the emergency from the

time it arose?

hours minutes









7. How do you prefer to receive alerts?

telephone call

notice on website

e-mail

pager

text message

other, if other how

8. Is the QuietCare system easy or difficult to use?

Easy (Go to A) Difficult (Go to B)

A. Is QuietCare extremely easy to use or somewhat easy to use?

Extremely easy to use Somewhat easy to use

B. Is the QuietCare system extremely difficult to use or somewhat difficult to

use?

Extremely difficult to use Somewhat difficult to use

i. What aspects are difficult?








9. In the last month, did you not receive an alert when your relative needed help?

Yes (Go to A) No (Go to # 10)

A. What type of emergency was it?









B. Why do you think you did not receive an alert?


10. Have you received false alarms in the last month?

Yes (Go to A) No (Go to # 11)

A. How often do you receive false alarms?

times a day, times a week, times a month

B. For what type of emergency was the last false alarm you received?





C. Why do you think you received an alert?





11. What are some advantages of having the Quiet Care system?





12. What are some disadvantages of having the QuietCare system?







13. What would you change about the QuietCare system?









14. What are some things you wish the Quiet Care system did that it does not do

now?





15. Are you satisfied or dissatisfied with the QuietCare system?

Satisfied (Go to A) Dissatisfied (Go to B)

A. Are you extremely satisfied or somewhat satisfied?

Extremely satisfied Somewhat satisfied

B. Are you extremely dissatisfied or somewhat dissatisfied?

Extremely dissatisfied Somewhat dissatisfied

16. About how many years have you been caring or providing assistance for your

relative or friend?

Years

17. About how many hours each day or week do you currently spend caring for your

relative or friend, including chores and errands?

hours per day

hours per week

18. Does your relative have any other help at home now, such as cleaning services or a

home health aide?

Yes (Go to A) No (Go to #19)

A. What type of help do they have?
















B. About how much time per day or week does that person help out?

hours per day

hours per week

19. How old are you?

Years old

20. Gender: Male Female

21. Would you describe yourself as African American, Caucasian, Hispanic, Asian, or

another race?


22. What level of education have you completed?

Grade school (k-6) Some college

Middle school (7-8) Bachelor's degree

High school (9-12) Master's degree

23. Are you married, single, widowed, divorced, or other status?

Married Single Widowed

Other

24. How many children do you have?

Children

A. Are any of them living at home?

Yes (Go to B) No (Go to # 29)


Doctorate/ MD








Divorced









B. How many are living at home?

Children living at home

What is your relationship to the QuietCare user?

SSpouse, Friend, Child,


Other, who?









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BIOGRAPHICAL SKETCH

Jessica L. Johnson completed her B.A. in health sciences and M.A. in occupational therapy

at The College of St. Scholastica in Duluth, MN. Jessica entered the University of Florida's

rehabilitation science doctoral program in August 2003. She was granted a 4-year Alumni

Fellowship to pursue her educational goals. During her fellowship, she worked as a research

assistant in the Rehabilitation Engineering Research Center on Technology for Successful Aging.

The assistantship led to Jessica's participation in research studies, 3 peer-reviewed journal

articles, 2 book chapters, and her interest in studying methods of assisting older adults to remain

safe and independent in their homes.





PAGE 1

CONSUMER RESPONSE TO HOME M ONITORING: A SURVEY OF OLDER CONSUMERS AND INFORMAL CARE PROVIDERS By JESSICA LYNN JOHNSON A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL OF THE UNIVERSITY OF FLOR IDA IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY UNIVERSITY OF FLORIDA 2008 1

PAGE 2

2008 Jessica Lynn Johnson 2

PAGE 3

To my husband, Michael; my son, Solomon; and my parents for all your love and support. 3

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ACKNOWLEDGMENTS First, I thank my family. I thank my husba nd, Michael, for his support in every way. I could not have accomplished this without him. I also thank my son, Solomon, for his patience and understanding. He was asked to wait numerous times while mom completed something for school and he did so without much complaint. I th ank my mother, Regis, for listening to me vent and sharing in my triumphs; my step-father, Ed, for his guidance and advice; and my father, Charles, for his support and encouragement. I thank my mentor and chair, William Mann, for his guidance and the opportunities he provided. I thank my committee members (Dr. Linda Shaw, Dr. John Rosenbek, and Dr. Hernan Vera) for their questions, suggestions, and support. I thank Janet Warwick for letting me in the door to do this project, Liz Shen for being open and accommodating, and Terri Fetchel whose help meant so much to me and this project. Without Terris efforts and her c oordination of the efforts of ot hers, this project would never have progressed as it did. Finally, I must thank my rehabilitation scienc e doctoral program (RSD) family. I thank Megan Witte for making me laugh, for our lunches at Leos, and helping this experience be one of the best and most memorable of my life. I thank Rick Davenport for providing words of inspiration and making me go to the gym. I th ank Marieke, Arlene, De nnis, Michael, Roxanna, Patricia, Bhagwant, and Leigh for leading the way. I thank Moorhouse, Eric, Pey-Shan, and Sandy for walking with me the rest of the way. 4

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TABLE OF CONTENTS page ACKNOWLEDGMENTS...............................................................................................................4 LIST OF TABLES................................................................................................................. ..........8 LIST OF FIGURES.........................................................................................................................9 LIST OF ABBREVIATIONS........................................................................................................10 ABSTRACT...................................................................................................................................11 CHAPTER 1 INTRODUCTION................................................................................................................. .13 Background and Significance.................................................................................................13 Conceptual Framework for Home Monitoring.......................................................................14 Introduction to the Internati onal Classification of Functi oning and Disability (ICF).....14 Home Monitoring and Older Adults................................................................................16 Summary.................................................................................................................................17 2 LITERATURE REVIEW.......................................................................................................19 Smart Homes.................................................................................................................... ......19 Tiger Place--University of Missouri--Columbia.............................................................20 Gator-Tech Smart House University of Florida..............................................................20 Center for Future Health--University of Rochester.........................................................21 AwareHome--Georgia Institute of Technology...............................................................21 BT Exact--United Kingdom............................................................................................22 Place Lab--Massachusetts Institute of Technology.........................................................22 MavHome--University of Texas--Arlington...................................................................23 Telehealth..................................................................................................................... ..........23 Personal Emergency Response System (PERS).....................................................................26 QuietCare Home Monitoring System.....................................................................................27 Study Purpose.........................................................................................................................28 3 MATERIALS AND METHODS...........................................................................................29 Introduction................................................................................................................... ..........29 Specific Aims and Hypotheses...............................................................................................29 Aim 1: To Determine If an Advanced HM S Meets the Needs of Older Persons with Disabilities Living Alone.............................................................................................29 Aim 2: To Determine Whether the HMS Us ers and Caregivers Are Satisfied with the Current System Features and What Changes May Improve the System...............29 5

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Aim 3: To Determine the HMS Users Level of Concern Regarding Invasion of Privacy in Utilizing a HMS..........................................................................................29 Participants.............................................................................................................................30 Inclusion Criteria for User...............................................................................................30 Inclusion Criteria for Caregiver.......................................................................................30 Exclusion Criteria............................................................................................................30 Informed Consent............................................................................................................30 Data Collection.......................................................................................................................31 HMS Users......................................................................................................................31 HMS user survey......................................................................................................31 OARSADL subset..................................................................................................33 HMS Caregiver Survey...................................................................................................33 Data Analysis..........................................................................................................................34 4 SURVEY RESULTS..............................................................................................................3 5 Survey Response Rates.......................................................................................................... .35 HMS User and Caregiver Matching.......................................................................................35 User Demographics.............................................................................................................. ..36 User Functional Capacity.......................................................................................................36 Caregiver Demographics........................................................................................................3 7 HMS Caregiver and User Relationship..................................................................................37 Aim 1: To Determine If an Advanced Home Monitoring System Meets the Needs of Frail Older Adults Living Alone.........................................................................................37 Aim2: To Determine Whether the HMS Users and Caregivers Are Satisfied with the Current System Features and What Changes May Improve the System............................41 Aim 3: To Determine the HMS Users Level of Concern Regarding Invasion of Privacy in Utilizing a Home Monitoring System.............................................................................42 Summary.................................................................................................................................44 5 DISCUSSION................................................................................................................... ......47 Major Findings........................................................................................................................47 How QuietCare Has Helped the Users............................................................................48 How QuietCare Has Helped the Caregivers....................................................................49 Perceived Advantages of the QuietCare System by the User..........................................50 Perceived Advantages of the QuietCare System by the Caregiver.................................51 Perceived Disadvantages of the QuietCare System by the User.....................................52 Perceived Disadvantages of the Qu ietCare System by the Caregiver.............................53 Recommended Changes to the QuietCare System..........................................................55 HMS User Privacy...........................................................................................................57 ICF Model.......................................................................................................................58 Limitations.................................................................................................................... ..........59 Future Research......................................................................................................................60 Implications and Conclusions.................................................................................................61 APPENDIX 6

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A HMS USER SURVEY...........................................................................................................63 B MULTIDIMENTIONAL FUNCTIONAL ASSESSMENT OF OLDER ADULTS: SELF CARE CAPACITY SUBSECTION.............................................................................72 C HMS CAREGIVER SURVEY...............................................................................................77 LIST OF REFERENCES...............................................................................................................84 BIOGRAPHICAL SKETCH.........................................................................................................90 7

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LIST OF TABLES Table page 4-1 HMS user demographics....................................................................................................45 4-2 Home and HMS user facts.................................................................................................45 4-3 HMS users OARS-ADL subset ratings............................................................................46 4-4 HMS caregiver demographics............................................................................................46 4-5 The relationship of the HMS caregiv er to the HMS user they assist.................................46 8

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LIST OF FIGURES Figure page 1-1 Home Monitoring Embedded in the ICF Model................................................................18 9

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LIST OF ABBREVIATIONS WHO World Health Organization ICF International Classification of Functioning and Disability ADL Activities of daily living IADL Instrumental activities of daily living HMS Home monitoring system OARS Older Americans Resources and Se rvices Multidimensional Functional Assessment Questionnaire 10

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Abstract of Dissertation Pres ented to the Graduate School of the University of Florida in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy CONSUMER RESPONSE TO HOME M ONITORING: A SURVEY OF OLDER CONSUMERS AND INFORMAL CARE PROVIDERS By Jessica Lynn Johnson May 2008 Chair: William C. Mann Major: Rehabilitation Science As our population ages, the number of people with a disability, who live alone, and who wish to remain in their own homes, is increasi ng. These older individua ls may require personal care and/or assistive technology. Home monitoring systems are assi stive technologies utilized to track an individuals activity pa tterns promoting safety and inde pendence. QuietCare is a home monitoring system embedded in the persons envi ronment designed to detect changes in the users behavior patterns that may indicate an em ergency situation. There has been no research on systems like QuietCare relative to whether user needs are being met and if users are satisfied with the system. The purpose of this study was to explore the percepti ons and experiences of home monitoring system users and informal caregivers. The sample included 29 QuietCare users a nd 30 informal caregivers. Through an interview, users completed an assessment of f unctional capacity and a ho me monitoring survey. The informal caregivers participated in a telepho ne interview and comple ted a survey regarding their perceptions of the Quie tCare home monitoring system. Data were analyzed using descriptive statistics. The HMS user sample was mostly female (72%), white (97%), and widowed (83%) with a mean age of 80. The HMS caregivers were main ly female (60%), white (100%), and married 11

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(87%) with an average age of 59. Both the users and caregivers were satisfied with QuietCare and felt it was easy to use. Only two of the us ers experienced emergencie s; both were detected and users felt the response time was reasonable. Users and caregivers perceived pe ace of mind as an advantage of using the system. Overall, users were not concerne d about privacy invasion in using the system and felt comforta ble being monitored with QuietCare. 12

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CHAPTER 1 INTRODUCTION Background and Significance By 2030, the number of older Americans is ex pected to nearly double to 70 million and will comprise 20% of the U.S. population (Nationa l Center for Health Statistics, 2007). This growth in population of older Americans poses a challenge in providi ng adequate care and support as some older adults age with or acquire disabilities. Approximately 7 million older Americans have chronic disabilities (Federal Interagency Forum on Aging-Related Statistics, 2004). While the rate of disabi lity is decreasing; the number of Americans over 65 who have chronic disabilitie s is increasing, due to the rapid growth in numbers of older adults (Feder al Interagency Forum on Aging-Related Statistics, 2004). As older adults age, they are more likely to acquire a disability (Ostchenga Harris, Hirsch, Parsons, & Kington, 2000). For example, 54% of American s 75-79 have a disability and 16% of them require assistance; whereas 72% over 80 have a di sability and 30% of those require assistance (Steinmetz, 2006). The population increase of olde r adults will also create an increased demand for employees in the health care industry, whic h is expected to grow 22% by 2016, compared to 11% for all other industries combined (Bureau of Labor Stat istics & U.S. Department of Labor, 2007). With the existing shortage of direct care workers, a drastic increase in demand will create a vast predicament with how to ade quately care for older adults (Fleming, Evans, & Chutka, 2003; Hussein & Manthorpe, 2005; Piotrowski, 2003). It is necessary to consider both how to provide care and support for older adul ts with disabilities and wher e to provide these services. Most adults over 45 want to stay in their hom e as long as possible (B ayer & Harper, 2000). This desire increases with age. Seventy-five percent of people 45-54 wish to remain in their 13

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current home, 83% of those 55-64, 92% of thos e 65-74, and 95% of those 75 and over (Bayer & Harper, 2000). Interviews conducted by Tinker & Lansley (2005) c onfirm this desire of older adults to remain in their homes. The ability to age in place may be upset by age-related chronic conditions. However, 82% of older adults want assistance provided in thei r home in the event they need help caring for themselves (Bayer & Harper, May 2000). Much assistance to older adults with disabilities comes from an informal caregiver (Li, 2005). Informal caregivers are generally spouses (38%) or children (41%) of the older adult w ith a disability (Wolff & Kasper, 2006). With todays society being so mobile, adult children relocating for employment reasons and older adults often retiring to places with a mild climate, many older adults do not have children nearby to assume the role of informal caregiver. Nineteen percent of men and 40% of women over 65 live alone (Federal Interagency Fo rum on Aging-Related Statistics, 2004). The percent of older adults living alone increases with age (He, Sengupta, Velkoff, & DeBarros, 2005). The impact of living alone and away from children or other potential sources of informal care may make aging in place difficult for the older adult with a disability. Conceptual Framework for Home Monitoring Introduction to the International Classifica tion of Functioning and Disability (ICF) The World Health Organization (WHO) Intern ational Classification of Functioning and Disability (ICF) is a classificat ion system for health and functioning (Arthanat, Nochajski, & Stone, 2004; Stucki, 2005). The ICF not only codifies health information, but is also useful in research for generating hypothese s, planning studies, and creati ng a common language useful in collaboration and disseminating information (Jette, 2006; Stucki, 2005). The ICF model has two main components F unctioning and Disability and Contextual Factors (Arthanat et al., 2004; Hemmingsson & Jonsson, 2005). These main components are 14

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each further divided into two categories. Functioning and Disability is divided into Body Functions and Structures and Activity and Particip ation. Contextual Fact ors is divided into Environmental Factors and Personal Factors. In classifying home monitoring, the first char acter would be e because home monitoring is considered an environmental factor. Envi ronmental factors are th e physical, social, and attitudinal environments in which people li ve and conduct their liv es (WHO, 2001). The remaining domains coincide with the following codes: body functions = b, body structures = s, activities and participation = d. These letters are then followed by chapter numbers (first, second, third, and fourth levels depending on what is being described). These codes may be followed by a decimal point and a qualifier. Th e qualifiers range from 1 = no problem to 4 = complete problem. Further classification of home monitoring may be more complex because it consists of 2 components. As depicted in Figure 1-1, home monitoring is not only the technology, such as sensors and servers, but also th e people who interact and interp ret the data being retrieved to determine when and how to intervene. Consid ering the technological side, home monitoring could be classified under produc ts and technology, which incl udes natural and human-made products or systems of products, equipment a nd technology in an individuals immediate environment that are gathered, created, produced or manufactured (WHO, 2001). The prefix would be e1. However, it is also reasonabl e to classify home mon itoring under support and relationships when considering the people who are involved in home monitoring and providing support. Support and relationships includes pe ople or animals that pr ovide practical physical or emotional support, nurturing, protection, assistance, and relationships to ot her persons, in their 15

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home, place of work, school or at play or in other aspects of th eir daily activities (WHO, 2001). This type of clas sification is e3. If the product and technology route of classification is ta ken, home monitoring would end in a final classification of e198, which is products and technology, ot her specified (WHO, 2001). However, if the support and relationships route is taken, home monitoring would end in a final classification of e398, which is support and relationships, other specified (WHO, 2001). Figure 1-1 demonstrates the in terrelationship of the domains and that a change in one domain could potentially affect the other domains This is denoted in the ICF diagram with bidirectional arrows. Home monitoring atte mpts to promote health and independence by intervening through a change in th e physical and social environments (Schneidert, Hurst, Miller, & Ustun, 2003). Home Monitoring and Older Adults Home monitoring supports the resident at hom e by monitoring for unsafe situations, such as taking medications inappropriately or undesirabl e temperature inside the home. Home monitoring also attempts to intervene quickly when a problem arises. For example, a fall for an older adult living alone is a potentially life threatening situ ation, home monitoring may decrease the risk of not being found in time after a fall. Home monitoring may not affect body struct ures, but it may have an impact on body functions. WHO (2001) defines bo dy functions as physiological and psychological functions of the body. Home monitoring may help improve physiological functions by reminding the resident to take medications appropriately. For example, medication compliance may be achieved by utilizing a home monitoring system th at tracks medication disp ensing and alerts the caregiver when medications are consumed inappropriately. If an older ad ult takes the right dose 16

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of their medication at the right time, they will be better able to ma intain health and body functions than when following an erratic schedule. Home monitoring may also affect psychol ogical functioning through tracking medication compliance and providing alerts when non-adherence occurs. A person with bipolar disorder will demonstrate better psychological functioni ng when following an appropriate medication regimen (Colom & Vieta, 2002; Lew, Chang, Rajagopalan, & Knoth, 2006). Home monitoring may also impact a residents psychological functioning by providi ng reassurance that someone is watching out for them. Home monitoring may redu ce anxiety and increase sense of security, as has been shown in tele-homecare (Lamothe, Fortin, Labbe, Gagnon, & Messikh, 2006; Tsuji, Suzuki, & Taoka, 2003). Home monitoring is not utilized to increas e independence with an activity, but observes the resident to ensure certain activities are completed within specific parameters. Home monitoring may ensure the resident has exited the bedroom by 10 am or taken their morning medications by 11am. If these activities have not been completed, the home monitoring service may call and prompt the resident to perform th e activity or contact the caregiver to cue the resident. Personal factors may affect how well the pe rson accepts the home monitoring service. Older people may not be as accepting of technol ogy as young adults, or previous experience with technology may contribute to acceptance of home monitoring. Other personal factors that may influence the outcome of home monitoring includ e: gender, race, fitnes s, lifestyle, habits, education, coping styles, behavior pattern, and upbringing (WHO, 2001). Summary Home monitoring may be a benefi cial tool in assisting older adults to remain independent and safe in their homes as long as possible a nd avoid premature assist ed living or nursing home 17

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placement. With growth in the numbers of olde r adults, the increased demand for direct care workers, and the desire for older adults to age in place, new methods for assisting older adults in their homes are needed. The QuietCare system represents the next generation home monitoring and emergency response system, but research is lacking to describe how older adults use the system and if it meets their needs. This study will describe older adults perceptions of the QuietCare system, explore whether their need s are being met, and offer suggestions for improvement in home monitoring systems. Body Functions and Structures Participation Health Cond ition Activity Environmental Factors Personal Factors Home Monitoring Products and Technology Support and Relationships Figure 1-1. Home Monitoring Embedded in the ICF Model. 18

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CHAPTER 2 LITERATURE REVIEW This review focuses on the use of home monito ring to help community living older adults maintain independence and age in place. Home m onitoring to help older adults age in place may range from something as complex as a smart ho me or as simple as a Personal Emergency Response System (PERS). Smart Homes A smart home is an environment constructed with various technological applications and devices to assist residents in performing daily activities. Th e idea of a smart home has been around since the early 1980s, with the goal of helping a person live more comfortably and conveniently (Stefanov, Bien, & Bang, 2004). Resear ch on smart home technology is now being conducted worldwide. This technology has the potential to maximize independence and help older adults age in place. Allen (1996) describe s the smart house as holistic, being directed by a central control unit and interpreting the users ne eds. The smart home is then able to execute actions to respond to the users needs. Smart homes have the potential to restore f unctional status and slow decline in older adults. Smart homes have an extensive list of possible benefits because of the integrated systems, and added benefit of potentially being connected to remote health care providers and caregivers. To realize the potential of sm art homes, many research teams are creating and improving smart home systems. In addition, the users interaction and perception of the technology is being studied to maximize user satisfaction and create useful and usable applications. 19

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Tiger Place--University of Missouri--Columbia Tiger Place is a senior living community near the University of Missouri-Columbia (MU) campus. At Tiger Place, MU is using technology and developing smart apartments to help older adults age in place and promote independence. Through focus groups, MU found older adults are receptive to technology (Rantz et al., 2005). Sixty-six percent of their participants used email and surfed the Internet. In addition, the older adults were willing to install technology in their homes if it was reliable, able to detect em ergencies, affordable, non-intrusive, and required minimal action by the user. Older adults felt they would benefit from smart home technologies that could provide emergency help, assistance with visual and heari ng problems, prevention and detection of falls, temperature monitoring, automatic lighting, monito ring of physiological parameters, stove and oven safety control, property security, intrud er alarm, reminder announcements of upcoming appointments or events, and information on advers e drug events and contraindications (Demeris etal., 2004). Many of these applic ations are for monitoring rather than altering a task to make it easier. Gator-Tech Smart House University of Florida The Gator-Tech Smart Home (GTSH) is a free -standing single family smart home near the University of Florida campus. The purpose of th e GTSH is to develop smart home technologies that assist older adults in ma ximizing independence, maintaining quality of life, and aging in place. The home is equipped with a smart front door that allows the user to identify the visitor and open the door remotely. The smart mailbox announces when the mail has arrived, preventing unnecessary walks to the mailbox. The lights, blinds, and television are also voice controlled, eliminating the need to move about the home and physically interact with these devices. A SmartWave utilizes radio fre quency identification (RFID) technology to 20

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automatically program the microwave for a frozen meal and plays a video helping the user sequence through the task of putting the meal safely into the microwave. The floor of the Gator-Tech Smart home is equipped with pressure sensors and integrated into the homes main computer to track the residents movement throughout the home. With software programming, this system will potentially be able to ask the resident if they are well upon detecting the absence of moveme nt for an unusual length of time. If the resident does not answer or says no, I am not okay, the home woul d call for help. Researchers at the Gator-Tech smart house are also working on cognitive prompting applications to assist an individual with mild dementia in sequencing through activities of daily living, such as washing hands or oral hygiene. Center for Future Health--University of Rochester The University of Rochesters Center for Future Health is attempting to monitor peoples behavior patterns and figure out what an altered pattern means (University of Rochester Medical Center, 2005). This is important because many smart home projects are tracking behavior and using a deviation from a normal pattern as a potentially dangerous situ ation. The Center for Future Health is also trying to monitor physiolo gical parameters wirelessly and communicate the information to a call center with the goal of preventing and detecting disease early (Knecht, 2001). They monitor vital signs, gait, sleep, behavior pattern, and exercise. AwareHome--Georgia Institute of Technology Georgia Techs AwareHome is used to create smart technologies for older adults to age in place (Sanders, 2000). The goal of the AwareHome is to allow older adults to be proactive regarding their health care, assist them in their daily activities, increase opportunities for social communication, and ensure safety and well-bein g (Mynatt, Melenhorst, Fisk, & Rogers, 2004). The AwareHome uses the gesture pendant, a wi reless pendant with both a camera and motion 21

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sensors. The pendant responds to the residents hand movements. Some of the commands the resident can give are to close the blinds, lock the doors, open the front do or, dim the lights, or adjust the thermostat temperature. In interv iews, older adults felt they did not need the technology now, they were afraid of becoming dependent on technology and losing abilities, and viewed the technology as something that would comp ensate for a disability, rather than standard features in future homes. Georgia-Tech is also working on the digital family portrait that provides a graphical view of the residents activity level to a remote caregiver. The digital family portrait provides the caregiver with information regarding the ou tside weather and the inside temperature (Mynatt et al., 2004). Movement between rooms is displayed in 15 minute increments and background shading indicates day or night. Regarding home monitoring, the older adults were interested if it was necessary, but not before. They were agre eable to 1 or 2 family members viewing their information, but no more. They did not want people to know more information than was necessary to maintain their independence. BT Exact--United Kingdom In the UK, BT Exact is working on a project to track a residents well-being and alert a caregiver when a problem is detected (Brown, Hine, Sixsmith, & Garner, 2004). The researchers monitor 6 activities: l eaving and returning home, visitors preparing and eating food, sleeping patterns, personal appearance, a nd leisure activities. To monito r the activities, sensors are strategically placed throughout the home. In the future, the persons activ ity pattern could be sent to a call center and monitored (BT Exact, 2005). Place Lab--Massachusetts Institute of Technology MITs Place Lab is a one-bedroom condo with hundreds of sensors (House_n Research Group, 2005). The goal is to track ac tivities and interactions with the environment. MIT is able 22

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to monitor a participants activity in their own home before and after their stay at Place Lab using a portable system (House_n Research Group, 2005). Some of the areas of study at Place Lab are proactive health (encourage healthy diet exercise, and medicatio n adherence), disease management, and accident prevention, which are all areas that could help an older adult age in place (House_n Research Group, 2004). MavHome--University of Texas--Arlington MavHome is a smart home designed to learn its inhabitants beha vior patterns and automate certain tasks, such as lighting and temperature (Cook, Youngblood, Heierman, Gopalratnam, Rao, Litvin, & Khawaja, 2003). The home is also attempting to monitor a residents health status and alert to any long or short term changes. Th e refrigerator would be able to identify its contents and reorder groc eries on-line. The microwave would search for recipes on-line and the home entertainment syst em would automatically record programs the resident might enjoy. MavHome has a reminder system that can be trig gered if the resident deviates from normal routine or wants to know about upcoming activ ities (Cheek, Nikpour, & Nowlin, 2005). These reminders can be helpful for taking medications correctly, locking doors, and turning off bath water. Residents can automate some of the home functions, such as climate control, water temperature, and lighting. Once the house learns the users preferences, it can automate those settings. If the house provides a reminder and the elder does not res pond, it could automate those activities such as shutting off the bath wa ter, turning off the stove, and locking the doors. Telehealth Smart homes and telehealth technology can be us ed to collect and track data on the homes residents. The data may be monitored by a careg iver, a company, or a hea lth care center. The caregiver may wish to ensure their family memb er is taking medications correctly and getting 23

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about the home. The monitoring company may monitor the resident for emergencies or potential risks and intervene upon detection by calling a local caregiver. The health care center may track specific health parameters to keep a chronic cond ition under control or look for certain signs to catch ailments early. An overall goal of home mo nitoring and telehealth is to keep the resident safe and healthy in the home for as long as possi ble. These interventions also help maximize independence and may allow the individual to age in place. Tele-homecare is used to remotely monitor individuals health parameters and provide medical services to high-risk pa tients and those unable to travel. Typically, the tele-homecare remote monitoring system has a ba se unit that communicates with a care coordina tion center at a hospital or clinic using telephone lines. The base unit may have peripheral attachments to monitor a variety of health parameters includi ng: medication compliance, blood pressure, weight, pulmonary function, glucose level, and more. Ma nn et al (2007) reported the most common uses for home health monitoring were for blood pressure, blood sugar, and pulse. Tele-homecare allows health care providers to intervene quickly when measurements are beyond the desired range. Individua ls are able to sit in the co mfort of their own home while health care providers conduct medical monitoring pr ocedures in their offices. Older adults have a strong acceptance of home health monitori ng devices (Mann, Marchant, Tomita, Fraas, & Stanton, 2002) and 80% are satisfi ed with their home health m onitoring systems (Mann et al., 2007). Tele-homecare enhances feelings of safety and security and increases confidence for the user (Sixsmith, 2000). Home health monitoring de vices also relieve personal and family worry (Mann et al., 2002). For those w ho do not use home health monitoring systems, most cite lack of perceived need and cost as the reasons for non-use (Mann et al., 2007). 24

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Tele-homecare has shown promise in decreasing home health care costs, as well as cost savings through the elimination or reduction of providers travel costs (Binder, HoffmanWellenhof, Salmhofer, Okcu, Kerl, & Soyer, 2007; Finkelstein, Speedie, & Potthoff, 2006; Litzinger, Rossman, Demuth, & Roberts, 2007). Moreover, numerous telemonitoring programs have reported decreased emergency room vis its, reduced hospital admissions and hospital bed days of care, and decreased hospital readmission rates (Frantz, Colgan, Palmer, & Ledgerwood, 2002; Jerant, Azari, & Nesbitt, 2001; Stensla nd, Speedie, Idelker, House, & Thompson, 1999). Because tele-care is becoming more widely used, companies like Cnow, Inc. are emerging. Cnow Inc. provides residents with a way to get face-to-face help over the Internet at all times (Cnow Inc., 2006). If a home health company or health care center wishes to set up a tele-health program, Cnow will take care of all the equipm ent and offer 24 hour technical support. Cnow provides 2-way real time video for customers. In one home tele-health interven tion study, older adults utilized either a hand-held in-home messaging device; a telemonitor with 2 way audi o-video and peripherals that monitored blood pressure, heart rate, weight, oxygen saturation, and heart and l ung sounds; or a video phone with 2-way audio-video communication (Chumbler, Mann, Wu, Schmid, & Kobb, 2004). A control group received usual care. The home tele-hea lth group improved significantly on all outcome measures, including instrumental activities of daily living (IADLs), FIMfunctional independence measure, and MMSEmini mental state exam. The c ontrol group declined significantly in IADL function a nd cognition as measured by the FI M. Other outcome measures remained stable for the control group. Th e control group and the tele-health group were significantly different from each other at 12 months on the IADL and FIM-motor (functional independence). The tele-health group also diffe red significantly on the FI Mcognitive, but not 25

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the MMSE (cognitive) measure. This study indi cates home tele-health programs have the potential to improve function a nd keep frail older adults i ndependent and safe at home. Personal Emergency Response System (PERS) A study of people found incapacitated in their homes reported the av erage amount of time someone spends down before being found is 15 h ours (Gurley, Lum, Sande, Lo, & Katz, 1996). Of those who are down and unable to call for help, 28% die. The difference in time spent down before being found is crucial. The average down time for someone found alive is 2 hours, compared to 18 for those found dead (Gurley et al., 1996). One way older adults can try to prevent becoming stranded in their home s is by using a home monitoring system. Personal emergency response systems (PERS) typically consist of an emergency call button worn on a pendant or bracelet, a base unit, and an emer gency response center (ERC). When the older adult has an emergency, the button is pressed and a signal is transmitted wirelessly to the base unit. The base unit then places a phone call to the ERC. The ERC communicates with the older adult through the base unit and calls a responder if help is needed. Fall risk is the most common reason older ad ults subscribe to a PERS (Mann, Belchior, Tomita, & Kemp, 2005). Subscribers want to know if they fall or require assistance that help is immediately available. Subscribers may even forego adult children as responders in order to utilize a close nei ghbor (Porter, 2003). Older adults report the most important way their PERS helps them is by giving them a feeling of security and decrea sing the worry of family member s (Mann et al., 2005). However, their sense of security may be disturbed if they experience false alarms that result in a responder entering their home unexpectedly or hear an unfamiliar voice in their home when the ERC is trying to communicate with them through the ba se unit (Porter, 2003). False alarms may contribute to the older adult not weari ng the pendant or can celing the service. 26

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Less than 50% of PERS subscr ibers wear their pendant when alone at home (Levine & Tideiksaar, 1995). Besides false alarms, older a dults are often concerned with how the pendant looks to others. In a study by Porter (2005) one of the older wome n took her pendant off because the button could be seen under her clothe s. Others removed their pendants when people came to visit, feeling they did not need it unless alone. Cost, lack of awareness, and perceived lack of need are the most co mmon reasons an older adult does not obtain a PERS (Bernstein, 2000; Ma nn et al., 2005). PERS are typically paid for out of pocket by the user and their family (Ber nstein, 2000). In Porte rs study (2003), 5 women obtained PERS after a recommendation from a home care nurse or case manager and the other 3 obtained PERS at the request of family member s. None of the women obtained the device because they were aware of it and inde pendently determined they needed it. These types of emergency response systems requi re the person to wear the device, to be conscious and able to press the button. If the older adult forgets to wear the device or chooses not to wear the device and falls, th ey may be unable to call for help. To alleviate some of these problems, home monitoring systems such as QuietCare have been developed. QuietCare Home Monitoring System QuietCare is a passively activated emergency response and behavior tracking system. The QuietCare system utilizes 5-6 strategically placed motion sensors in the older adults home, the ADL Communicator (base unit), and the QuietCare Server. The motion sensors are installed in the kitchen, bathroom, bedroom, and near medicati ons to monitor the residents activity. The sensors wirelessly transmit information about the residents movement to the ADL Communicator. The ADL Communicat or stores the information and transmits it via telephone lines to the QuietCare Server every 2 hours. When the server rec ognizes changes in the 27

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residents behavior, it alerts th e response center and the users caregiver. Caregivers may login to a secure website and view the olde r adults activity charts at any time. During the first 2-3 weeks following QuietCare installation, the system learns the users typical activity patterns. Once the QuietCare system has baseline ranges of normal behavior patterns, the system is able to determine when the users pattern is abnormal. The QuietCare system monitors the users following types of behavior: Waking and leaving the bedroom by their normal time Exiting within a certain amount of time after entering the bathroom Visiting the medication ar ea at appropriate times Entering the kitchen regularly for meals Moving around the home in their normal activity range Visiting the bathroom within the rang e of their normal number of visits The QuietCare home monitoring system may provide a method of responding to emergencies and possibly early detection of illness without user action. However, there has been no research on home monitoring systems like QuietC are, in terms of user needs and satisfaction. Study Purpose The purpose of this study was to examine user needs and satisfaction of the most currently advanced, commercially available, home monitori ng system, QuietCare. User sense of security and privacy in using this home mon itoring system was also investigated. 28

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CHAPTER 3 MATERIALS AND METHODS Introduction In this chapter the specific aims and hypothe ses are presented, the sampling criteria and processes are explained, the data collection met hods are discussed, and the data analysis is presented. Specific Aims and Hypotheses Aim 1: To Determine If an Advanced HM S Meets the Needs of Older Persons with Disabilities Living Alone. Hypotheses: (a) The HMS detects emergencies and alerts the call center and/ or caregiver within a reasonable time frame according to the user and informal caregiver. (b) The HMS user does not experience em ergencies that go unanswered by the HMS and call center. (c) The HMS caregiver does not experience si gnificant stress in relation to using the HMS. Aim 2: To Determine Whether the HMS Users and Caregivers Are Satisfied with the Current System Features and What Changes May Improve the System. Hypotheses: (a) HMS users and caregivers perceive the sy stem as easy to use and are satisfied with the system. (b) HMS users and caregivers recommend a dditional features and changes to the system to improve the home monitoring system. (c) HMS users and caregivers experience advantages and disadvantages of using the system. Aim 3: To Determine the HMS Users Level of Concern Regarding Invasion of Privacy in Utilizing a HMS. Hypotheses: (a) HMS users are comfortable with the way QuietCare monitors them. 29

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(b) HMS users have minimal concern of privacy invasion in using the QuietCare system. Note: Emergencies are defined as situations when the user is in danger and unable to obtain assistance (e.g. a fall, medical emergency). Participants Participants were recruited from a QuietCare di stributor in central Florida. The distributor gathered the list of current users and caregivers who met the in clusion criteria and contacted them to determine their interest in participati ng in the study. The distributor determined 41 HMS users and 42 HMS caregivers met the criteria descri bed below. All were invited to participate in the survey. Inclusion Criteria for User Over 60 years of age Lives alone in the community Has used the home monitoring system for at least 3 months Able to provide informed consent Ability to speak and understand English Inclusion Criteria for Caregiver Cares for a home monitoring system user Able to provide informed consent Able to speak and understand English Exclusion Criteria Presence of any health problems or disabilitie s that would interfere with the ability to participate effectively in th e interview process, such as severe hearing or speech impairment based on the investigators clinical impression Informed Consent If the potential participant wi shed to participate in the st udy, the distributor advised that their contact information would be given to the in vestigator at the Univer sity of Florida. The 30

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investigator contacted the pa rticipants by phone, explained the study, answered any questions, and obtained informed consent. Data Collection Of the 41 HMS users who were invited to part icipate in the survey, 29 accepted and were part of the study. Of the 42 HMS caregivers who were invited to partic ipate in the study, 30 agreed to participate and became part of the study. HMS Users Seven HMS users were interviewed in-pers on with the remaining 22 interviewed via the telephone. The interviewer administered the HMS user survey and the Activities of Daily Living section of the Older Americans Resources and Services Multidimensional Functional Assessment Questionnaire (Fillenbaum, 1988). The interviews lasted an average of 39 minutes and were scheduled at the participants convenience. HMS user survey The HMS user survey was implemented to unde rstand perceptions of the QuietCare user: the advantages/ disadvantages in using the syst em, what they would change about the system, and concern for privacy while being monitored. The survey consisted of open ended, closed ended and partially closed-ended questions. Qu estions were assembled using guidelines from Dillmans Mail and Internet Surveys: The Tailored Design Method (Dillman, 2006). The guidelines Dillman (2006) suggests are as follows: Ensure each question requires an answer Form questions so respondents may provide an accurate, readymade answer easily Form questions so the responder can r ecall and report past behaviors easily Refrain from asking the responder for inform ation they may be unwilling to reveal Refrain from using vague quantifiers such as on a scale of 1-10 Choose simple rather th an specialized words Be succinct Use complete sentences 31

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Develop mutually exclusive response categories The home monitoring survey ends with demographic questions including items such as age, gender, marital status, and type of residence. Once the survey was assembled, it was distribute d to two individuals for expert review. The suggested changes to the survey included: Create an Access database and organize the surv ey to easily transfer responses from the paper survey into an Access form. Ask demographics last as they are th e least interesting to the participant Never give respondent more than 4 options in a list, with seniors not more than 3 Ask them about the last month, more th an that may be difficult to remember Break down Likert scales, rather than giving them 4 categories start with 2. For example, rather than Are you very satisfied, somewhat satisfied, somewhat dissatisfied, or very dissatisfied? ask Are you satis fied or dissatisfied? and then ask Are you very satisfied or somewhat satisfied? Most interesting questions go first, most threatening or embarrassing go towards the end A final suggestion was to break down the survey questions considered too difficult for the respondents. For example, one question asked the respondent to estimate how long it takes QuietCare to respond to emergencies. It was recommended to start by asking how many times in the last month the individual had to use QuietCare, when was the last time it was used to respond to an emergency, and how long did it take to get a response. Once the survey was reconstructed following the advice of the expert reviewers, it was administered to the first 2 participants. The da ta from these surveys was reviewed to determine which questions were confusing, superfluous, ontarget, and missing. The survey was finalized and administered to the remaining participants. 32

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OARSADL subset The OARSADL subset is a 15 item inve ntory assessing the amount of assistance the individual requires to complete Instrumental Activities of Daily Living (IADL), such as housekeeping and shopping, as well as Basic Activities of Daily Living (BADL), such as bathing and dressing (Fillenbaum, 1988). To establish cr iterion validity, the ADL subset was compared to physical therapist ratings of individuals pe rformances of ADLs (Fille nbaum, 1988). The two measures were correlate d using Kendalls tau ( tau = .83, p < .001) and Spearmans rank order ( rs = .89, p < .001)) correlations (Fillenbaum, 1988). In terrater reliability was established on the ADL subset by having 11 raters score 30 participan ts. Then the interclass correlation coefficient was derived from an ANOVA perf ormed on the subset (ICC= .865, p < .001) (Fillenbaum, 1988). In scoring the OARS-ADL subset, the indi viduals capacity to perform ADLs is categorized by one of five categories (Fillenbaum, 1988). Excellent ADL capacitycan perform all ADLs without assistance and with ease Good ADL capacitycan perform all ADL s without assistance Mildly impaired ADL capacitysome help is required with 1-3 ADLs Moderately impaired ADL capacityrequires as sistance with at least 4 ADLs, but can get through a single day without hel p. Or regularly requires help with meal preparation Severely impaired ADL capacityneeds help each day but not necessarily throughout the day or night with many ADLs Completely impaired ADL capacityneeds help throughout the day and/ or night to carry out ADLs HMS Caregiver Survey Prior to initiating the interview, the resear cher explained the study and obtained informed consent from the participants. The interviews we re scheduled at the caregivers convenience and 33

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lasted an average of 22 minutes. All 30 caregivers were interv iewed by telephone and administered the HMS caregiver survey. The survey items were designed to obtain caregi vers perceptions on what it is like to be a caregiver for a person using the QuietCare system what they would change about the system, and what works well for them. As with the HMS user survey, the HMS caregiver survey consisted of open ended, closed ended and partiall y closed ended questions. It was also formed using Dillmans (2006) guidelines for developing survey questions. The survey ends with demographic questions including items such as age, gender, marital status, a nd type of residence. The expert review procedure di scussed for the HMS user survey was also applied to the HMS caregiver survey. Data Analysis Surveys were recorded by hand during each interview and then entered into an Access database. Queries were executed to analyze variables of interest. All analyses were done with quantitative data. In Chapter 5, the qualitative information gathered was used to compliment the quantitative data. All data we re analyzed using descriptive statistics (measures of central tendency and frequencies). 34

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CHAPTER 4 SURVEY RESULTS This chapter covers the survey response rate, demographic information and ADL capacity for HMS users, caregivers demographic info rmation, and the results for each hypothesis. Survey Response Rates The sample consisted of 29 HMS users and 30 HMS caregivers. The survey response rate for HMS users was 70.7% and the response rate for HMS caregivers was 71.4%. These response rates are high compared to ot her studies that have utilized telephone interviews for data collection. In a study by Bliesz ner, Ronberto, and Singh (2001), the researchers used telephone interviews to assess service use by older adul ts and achieved a 50.2% response rate. Another study utilized a telephone survey to assess quality of life in older adults w ith chronic illnesses; the response rate was 47% (Bayliss, Ellis, & St einer, 2007). A study used a telephone survey to compare ethnicity and reluctance to use the emergency room and achieved a 56% response rate (Reime, Tu, Tzianetas, & Ratner, 2007). HMS User and Caregiver Matching Not all of the HMS users and caregivers were pairs. Some of the HMS users had caregivers who were unable to participate. Ex amples for non-participation of the caregiver included the caregivers lack of time or the care giver was a professional from an agency such as hospice. Likewise, some HMS caregivers cared for QuietCare subscribers who were unable to participate. Some examples were the subscrib er was hard of hearing, unable to speak, or experienced short term memory loss. Of the total sample, 17 HMS users matched 20 HMS caregivers. Three HMS users had two caregiver s each who were interviewed as part of the study. The remaining users and caregivers did not have counterparts. 35

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User Demographics The home monitoring system users demogra phic information was obtained from the HMS User Survey. As seen in Table 4-1, the HMS user sample was mostly female (72%), white (97%), and widowed (83%) with a mean age of 80. In addition, the majority (52%) of the HMS users had at least one child livi ng within 20 miles of their home. The majority (55%) of the HMS users resided in single family homes and lived in their homes for an average of 14 years as can be seen in Table 4-2. In addition, HMS users subscribed to QuietCare for an average of 7 months. Most of the HMS users were introduced to the system by their adult child (31%) or through church (31%). User Functional Capacity The HMS users functional ADL capacity was assessed with the OARSADL subset (Fillenbaum, 1988). As seen in Table 4-3, 55% of the HMS users were able to perform all ADLs without assistance. Twenty-eight percent of the HMS users reported mildly impaired ADL capacity, the ability to perform all but 1-3 ADLS and able to prepare their own meals. Seven percent reported moderately impaired ADL capacity, regularly needing assistance with at least 4 ADLs or with meal preparation. Finally, 10% of the HMS users reported severely impaired ADL capacity, requiring assistan ce each day with many ADLs. In 2004, 27% of Medicare participants over 65 had difficulty with 1 or more ADLs and those plus another 14% had di fficulty with IADLs (U.S. Ad ministration on Aging, 2006). A remaining 59% of Medicare participants over 65 did not have di fficulty with IADLs or ADLs, which is close to the 55% reported in the HMS user sample if those with excellent and good ADL capacity are combined. 36

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Caregiver Demographics The caregivers demographic information was obtained from the HMS Caregiver Survey. As seen in Table 4-3, the HMS caregivers were ma inly female (60%), white (100%), and married (87%). The HMS caregivers average age was 59, which closely resembles the average age of 60 for caregivers in a meta-analysis conducted by Pinquart and Sorenson (2007). Likewise, the 1999 Informal Caregiver Survey reported the aver age age of caregivers as 62.5 (Wolff & Kasper, 2006). Considering gender of the caregiver, th e HMS caregiver sample resembles that of an AARP and the National Alliance for Caregiving st udy (2004), which reported caregivers in the U.S. as 61% female and 39% male. Only 27% of the HMS caregivers still had children at home. The number of children at home ranged from 0-6. HMS Caregiver and User Relationship As seen in Table 4-5, an adult child ( 73%) was the most common HMS caregiver. According to the Family Caregiver Alliance (2001), the adult child is the most common caregiver (41%), followed by another relative (27%) and a spouse (23%) for a person over 65. However, the meta-analysis on physical health of caregivers by Pinquart and Sorenson (2007) indicated that 50% of the careg ivers were spouses and 38% were adult children. Since the HMS user sample only included people who lived alon e, few (if any) spous al caregivers were expected. Aim 1: To Determine If an Advanced Home Mo nitoring System Meets the Needs of Frail Older Adults Living Alone. To determine if the HMS was meeting the n eeds of community based older adults living alone, HMS users and caregivers were asked severa l questions from their respective surveys. The questions posed to the user included the number of emergencies experienced in the last month, if the system detected all emergencies, a nd if help came in a reasonable amount of time. 37

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The caregiver was also asked if the person for whom they provide assistance experienced any emergencies within the last month, if emerge ncies were detected, and if a responder was contacted within a reas onable amount of time. Finally, the caregiver was asked several qu estions concerning the burden of being a responder. The questions posed involved whet her the system has helped the caregiver, consideration of discontinuing th e service, frequency of checki ng the Internet to track the individual, system ease of use, a nd the frequency of false alarms. Hypothesis 1a: The home monitoring syst em detects emergencies and alerts the call center and/ or caregiver within a reasonable time frame according to the user and informal caregiver. When the HMS users were asked if they had an emergency within the last month, 1 of the 29 users reported they had. When asked about the last time they had an emergency, only one additional person experienced an emergency during the time in which they had been using the HMS. The emergency occurred 3 months prio r to the interview. Both emergencies were detected by the QuietCare system. The types of emergencies experienced were a fall and a medical emergency. The users felt QuietCare re sponded to their emergencies in a reasonable amount of time. None of the caregivers reported caring for a user who experienced an emergency within the last month. None of the caregivers matched th e two HMS users who experienced emergencies. When the users were asked if the QuietCare system has helped them, 21 of the 29 (72%) stated that it has helped them. The ways in which the HMS has helped the participants are discussed in Chapter 5. Hypothesis 1b: The home monitoring system user does not experience emergencies that go unanswered by the home monitoring system and call center. When the HMS users 38

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were asked if they had experienced an emergency in the last month that the QuietCare system did not detect, none of the 29 users reported having an undetected emergency. Likewise, none of the caregivers interviewed reported th e individual they monitor experi enced an emergency that went undetected within the last month. In addition, the HMS users were asked if the syst em makes them feel more or less secure. Twenty-four of the 29 HMS users stated the QuietC are system makes them feel more secure. Of those 24, 18 stated the system makes them feel much more secure. Two of the 24 said the system makes them feel a little more secure and the other two said just more secure. The remaining 5 HMS users stated that the system does not make them feel more secure or less secure. Where the system makes the majority of peopl e feel more secure, it does not make them feel more or less independent. When the HMS users were asked if the system makes them feel more independent or less independe nt, 18 of the 29 (62%) stated ne ither. The other 11 stated the system made them feel more independent. Of those 11, 7 stated it made them feel much more independent and 4 said a little more independent. Hypothesis 1c: The home monitoring system caregiver does not experience significant stress in relation to using the home monitoring system. When asked if the QuietCare system has helped them, 29 of the 30 (97%) of the HMS car egivers stated that it has helped them. The one participant who said that it hadnt helped stated her mother was very independent and she doesnt worry about her. When the HMS caregivers were asked if th ey had ever considered discontinuing the QuietCare service, 11 of the 30 caregivers indicated they ha d considered discontinuing the 39

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service. The most common reason given for cons ideration of discontinuing the service was lack of need. When the HMS caregivers were asked how often they check on their friend or relative using the QuietCare website, 2 car egivers do not check the e-mail or website, but entirely rely on the call center to telephone them if there is an emergency. Seventeen care givers only check the daily e-mail report to view the users activity leve l. Eight people check the website once a day to once a week, as well as the daily e-mail report. Two people check the website 2-3 times per day and read the daily e-mail report. One person says she checks several times a day because she is on the computer constantly anyway. When the HMS caregivers were asked if the Quie tCare system was easy or difficult to use, 29 of the 30 caregivers stated that it was easy to use and one did not answer this item. Of the 29 that answered, 26 stated that it was extremely easy to use, tw o stated it was somewhat easy to use, and one stated it was just easy to use. When the HMS caregivers were asked how ofte n they receive false alarms, 10 of the 30 caregivers experienced one false al arm within the last month. Fi ve of the false alarms were because the user was out of town and the system was not placed on vaca tion mode. Two of the caregivers received false alarms because of too much bathroom activity. In both instances, the user had company and the system was reporting th e activity of everyone in side the residence. One alarm was for a possible bathroom fall, but the user was actually spending more time in the bathroom because she was cutting her hair. Two alerts were for low meal preparation because the user had gone out for a meal. None of th e false alarms were because the system was reporting inaccurate data. 40

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Aim2: To Determine Whether the HMS Users and Caregivers Are Satisfied with the Current System Features and What Changes May Improve the System. Participants were asked questions to determin e if the system was easy versus difficult to use and report their satisfaction with the system. In addition, participants were interviewed to determine what aspects of the system were adva ntageous, if there were disadvantages to having the system, and if there were thi ngs the participants would change. Hypothesis 2a: The home monitoring system users and caregivers perceive the system as easy to use and are satisfied with the system. When the HMS users were asked if QuietCare was easy or difficult to use, 100% felt the home monitoring system was easy to use. When asked if it was very easy to use versus some what easy to use, 100% stated that the system was very easy to use. Again 29 of the 30 HMS caregivers thought the home monitoring system was easy to use and one did not answer Of the twenty-nine that thought the system was easy to use, 26 thought the system was very easy to use, 2 thought it was somewhat easy to use, and 1 just stat ed it was easy to use. Of the 29 HMS users surveyed, 26 stated they were satisfied with the home monitoring system and 3 did not respond. Of the 26 who were satisfied, 24 were very satisfied and 2 were somewhat satisfied. Of the 30 HMS caregiver s interviewed, 29 were satisfied with the system and one did not answer. Of the 29 that were satisfied with the home monitoring system, 28 were very satisfied and one was somewhat satisfied. When the HMS users were asked if they ha d ever considered discontinuing QuietCare, only 5 of the 29 (17%) had. The most common reason given for possibly discontinuing the system was lack of need. Hypothesis 2b: Home monitoring system users and their caregivers recommend additional features and changes to the system to improve the home monitoring system. 41

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When asked what they would change about the HM S system or what were things they wish the system did that it doesnt do now, 8 of the 29 us ers had suggested changes or additions to the home monitoring system to improve its capabil ities. About twice as many (17 out of 30) caregivers had suggested changes or additions. The changes recommended are discussed in Chapter 5. Hypothesis 2c: The QuietCare users and their caregivers experience advantages and disadvantages of using the system. When asked about the advant ages of having the HMS, 27 of the 29 users reported advant ages of having the home monitoring system. The most common advantages were peace of mind for the user a nd peace of mind for the family. All of the caregivers reported advantages of having the home monitoring system Again, the most frequently reported advantage was providing peace of mind. The advantages of the system are discussed further in Chapter 5. When asked about the disadvantages of ha ving the HMS system, only 9 of the 29 users identified disadvantages of having the syst em. Cost was the most commonly identified disadvantage. Thirteen of the 30 caregivers reported disadvant ages of the home monitoring system. Again cost appeared to be the most common disadvantage. Disa dvantages are discussed further in Chapter 5. Aim 3: To Determine the HMS Users Level of Concern Regarding Invasion of Privacy in Utilizing a Home Monitoring System. To determine whether the HMS user was concerned about privacy invasion using the HMS, the HMS users were asked whether or not they were comfortable being monitored in the way QuietCare works. They were also asked if they were comfortable with their caregivers being able to see their activity information. Fina lly, the users were asked if they were concerned 42

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about their privacy being invaded using the syst em and if they trusted their information was adequately protected on the website. Hypothesis 3a: Users are comfortable with the way QuietCare monitors them. When asked if they were comfortable or uncomfortab le with being monitored in the way in which QuietCare works, all of the us ers reported they were comfortable with the way QuietCare monitors them. When asked if they were very comfortable or somewhat comfortable, 27 of the 29 users stated they were very comfortable and 2 of the 29 stated they were somewhat comfortable. When asked if they were comfortable or unc omfortable with thos e who can view their activity information being able to see their information, 26 of the 29 stated they were comfortable. Three users did not answer the question. Of the 26 who were comfortable, 25 were very comfortable with pe ople being able to view their information and 1 was somewhat comfortable. Hypothesis 3b: Users have minimal con cern of privacy invasion in using the QuietCare system. When the HMS users were asked if they were concerned about their privacy being invaded using the QuietCare system, 28 of the 29 users stated they were not concerned. When the one HMS user was asked whether she wa s very concerned or a little concerned about her privacy being invaded, the user said she was a little concerned. When the HMS users were asked if they believed their activity information was adequately protected on the QuietCare website, 26 of the 29 users stated they believed their information was adequately protected. Three users were unsure and did not wish to answer yes or no. When asked if they trusted that only authorized people were able to view their information, again 26 of 43

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the 29 users stated they believed only authorized people could view their information. The same 3 people did not answer the question. Summary The HMS detected all of the users emergenc ies; no emergencies went undetected. Most of the HMS caregivers have never considered discontinuing the system, they check the daily email to view the users activity, and they do not receive false alarms. Both the HMS users and caregivers were satisfied with the system and found it very easy to use. Mo st of the users and all of the caregivers identified advantages of ha ving the system and less than half identified disadvantages of having the system. Overall, th e users were comfortable with the way QuietCare monitors them and did not have concerns of privacy invasion. 44

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Table 4-1. HMS user demographics Frequency (%) or Mean(SD) Range Age 80(10.1) 61 >89 Gender Female 21 (72%) Male 8 (28%) Race Black 0 White 28 (97%) Hispanic 0 Asian 1 (3%) Other 0 Educational Level High School (9-12) 9 (31%) Some College 11 (38%) Bachelors Degree 4 (14%) Masters Degree 2 (7%) Ph.D/ MD 3 (10%) Marital Status Widowed 24 (83%) Married 1 (3%) Divorced 3 (10%) Single 1 (3%) Other 0 (0%) No. of Children 2.5 (1.5) 0 6 No. of Children w/in 20 miles .9 (1.2) 0 5 Table 4-2. Home and HMS user facts Frequency (%) or Mean (SD) Range Type of Home Single Family 16 (55%) Multi-unit Bldg. (condo) 5 (17%) Mobile Home 8 (28%) Semi-detached (duplex) 0 (0%) Other 0 (0%) Years in Home 14.4 (15.6) .5 56 Months of HMS Use 7.3 (5.3) .25 24 Referred to HMS by: Adult child 9 (31%) Church 9 (31%) Hospice 4 (14%) Friend 3 (10%) MD 1 (3%) Independently 1 (3%) Other 2 (7%) 45

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Table 4-3. HMS users OARS-ADL subset ratings ADL Capacity Frequency (Percent) Excellent ADL Capacity 6 (21%) Good ADL Capacity 10 (34%) Mildly Impaired ADL Capacity 8 (28%) Moderately Impaired ADL Capacity 2 (7%) Severely Impaired ADL Capacity 3 (10%) Table 4-4. HMS caregiver demographics Frequency (%) or Mean (SD) Range Age 59.1 (8.9) 38-69 Gender Female 18 (60%) Male 12 (40%) Race White 30 (100%) Black 0 (0%) Asian 0 (0%) Hispanic 0 (0%) Other 0 (0%) Educational Level High School 4 (13%) Some college 9 (30%) Bachelors Degree 11 (37%) Masters Degree 6 (20%) Ph.D./ M.D. 0 (0%) Marital Status Married 26 (87%) Divorced 2 (7%) Single 1 (3%) Widowed 0 (0%) Other 1 (3%) No. of Children 2.8 (1.7) 0-8 Children at Home 8 (27%) Table 4-5. The relationship of the HMS car egiver to the HMS user they assist Caregiver Relationship to User Frequency (Percent) Adult Child 22 (73%) Daughter/ Sonin-Law 3 (10%) Sibling 3 (10%) Other 2 (7%) 46

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CHAPTER 5 DISCUSSION The purpose of this study was to explore the most currently advanced, commercially available home monitoring system QuietCare. I sought to determine users and informal caregivers perceptions of the QuietCare system, in terms of satisfacti on and ease of use. I examined the users sense of security and priv acy in using this home-monitoring device. The research method used was a survey. I felt this method was useful to provide an overview of how the QuietCare system was working for the older a dults and informal caregivers. The compilation of survey results did provide a picture of the general perception of th e home monitoring system. The first part of this chapter includes a di scussion of the major findings of the study, followed by study limitations, areas for future res earch are suggested, and study conclusions are presented. Major Findings Very few of the HMS users ever experienced an emergency while using the system. The two HMS users who had experienced emergencies used the system for 8-12 months. Even though the others had not been rescued from an emergency, they did feel that the QuietCare system helped them. Likewise none of the careg ivers reported that the pe rson they look after had experienced an emergency, but almost al l confirmed the system helped them. Initially, I sought to describe relatively objective measures of the usefulness and effectiveness of the HMS. I focused part of the survey on the number of emergencies experienced, the circumstances around the emergenc ies, the response time of the responder, and the outcome of the situation. However, the re sults indicated that while these measures are important, the subjective results of how the participants felt about the system were also essential. The subjective results provide insi ght into how the system is working for the participants as well. 47

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If the participants felt the system was not repo rting accurate data or there were a number of problems with the system, the participants may ha ve expressed more nega tive feelings regarding the system. The following sections discu ss some of the more subjective findings. How QuietCare Has Helped the Users When asked how the QuietCare system has helped them, 76% of the users who stated the system helped them said it was because it provides them and their families with peace of mind. A sampling of their quotes follows. I have peace of mind knowing my daughters will be alerted if there is no movement (in my home). Knowing it is here gives me confidence that someone is looking out for me. It provides (my children) comfort, even with their busy lives they can check the website. Three participants also stated the system increased or improved communication with their children. One stated, It has improved communication with my children. It makes them more aware of me and they check on me. One participant recounted an event when the sy stem noticed he was utilizing the bathroom more frequently, the user subsequently discov ered a medical problem. While this was not technically an emergency, as th e increased bathroom use was a warning that came through an email rather than an urgent call to the car egiver, it still was seen as a benefit. The same user stated the system allows him to check on his medication compliance. Occasionally, he will visit the QuietCare website to see if he consumed his medication. At times he experiences confusion or memory impairment and the website acts as a back up for him. One HMS user reported the system saved her life. The individual was home after recent surgery. She experienced difficu lty breathing and remained seated in her living room chair, 48

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which was unusual. The system triggered an aler t because her activity level was too low. Her caregiver was notified and c ontacted her physician, who detected a pulmonary embolism. How QuietCare Has Helped the Caregivers When asked how the QuietCare system has helped them, almost all of the HMS caregivers stated it has given them peace of mind. The caregiv ers appreciate being able to read the daily email report or check the website and know their love d one is all right. Some of their comments are below. It continually gives me reassurance as to wh at she is doing. She has attempted suicide a couple times. This allows me to see that she is taking her medicat ions and functioning. We live 30-40 miles apart. It is a comfort to me. She has said she doesnt need it, but my brother and I told her that we do. Even when we were in South America we coul d get information. It is interesting to know what is happening. I have peace of mind knowing he has something more than a daily call from my sister. Once there wasnt any move ment because he was gone on a trip and they called. So I know it responds. I have a sense of peace about her being there alone. One caregiver explained how the system improve d her quality of life, It has helped my quality of life. Sometimes the mother-in-law/ da ughter-in-law relationship is not the best. This allows me to check the computer to see that sh e is okay without having to call her all the time. Another caregiver also appreci ated the reduction in demand to telephone, The daily e-mail summarizes the last 24 hours. I like this because of the unobtrusiveness. I dont have to call her all the time to know she is okay. Another interesting way the system has helped caregivers is that it allows them to check on their relative even when they cannot place a phone call. One caregiver stated, We called her a couple times and couldnt get through. But we can look on the computer and see she is okay. One caregiver moved the system with her father when he changed residences. Moving the system with him was beneficial because they were able to help him adjust to the move. It 49

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makes us more comfortable. Since we moved him he has a different routine. It allows us to see that he is adjusting well and lets us know if we need to tweak th ings. Like when he first moved, his days were thrown off and he was sleepi ng until noon. The QuietCare system let us catch that. Another caregiver also us es the system proactively to watc h for potential problems. The QuietCare system helped us develop a pattern fo r mom. She has urinary issues; it helps us know if she has a UTI coming on. One caregiver appreciated the ability to handle pr oblems from out of state, I could tell he wasnt taking his medications appropriately. Then once his AC quit and the temperature was over 90 degrees. I was able to deal with both of those problems remotely because I knew what was going on. Perceived Advantages of the QuietCare System by the User While 21 of the users stated the QuiteCare system had helped them, 27 pointed out advantages of having the system. This may be because the system could be helpful for the family or other individuals, but not them pe rsonally. Ninety-three percent of the users who identified advantages described peace of mind as a main advantage. Some of their quotes follow. The system is insurance. I am (age), al one, and in good shape, but you never know. My family is (out of state) and it gives them peace of mind. It provides a sense of security. My children dont have to worry anymore. They can go on the computer and check on me. It is good to know you are not going to lie on the floor for hours without anyone finding you. I know they monitor and watch what I do. My ch ildren can see that I am doing all right. Before I had the system I passed out for 11 hours on the bathroom floor and I know that wouldnt happen now. 50

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Another advantage noted was the efficiency of getting information. One user stated, It lets the nurses know how I am doing without th em bugging me and it is efficient for them as well. Another advantage identified was that it wa s non-invasive. The system is non-invasive because it does not utilize cameras, but also becaus e it does not require the user to wear anything or to interact with the equipment. Below are HMS users statements. I had (a push button system), but I was more cap able then. Now I would forget to wear the necklace. The advantages are the communication the ch ildren have and that it is non-invasive. Perceived Advantages of the Quie tCare System by the Caregiver All of the caregivers reported advantages of the system and 80% described peace of mind as a main advantage. Some of the caregivers statements follow. The security of knowing if she needs help, she can get some in a reasonable time. I cant be with her 24 hours a day, but I can know that everything is okay. Peace of mind for the family and the pers on using it. That is the main thing. The fact that you can go on with your own lif e and not have to worry about the aging parent (is an advantage). It gives me peace of mind, day or night they can get in touch with me. Six of the caregivers also identified efficiency as an advantage of the system. They can get a picture of the persons day quickly from the da ily-e-mail report and know that if an emergency arises they will be called. Their quotes are included below. It is an extra security alert with the sy stem if something goes wrong you are quicker to notice it. I dont have to call every morning. It keeps me from having to call her; you see it so you know everything is okay. Gives people a means to check on the necessities. If I look on the web, I can see if she is missing medications or meals. 51

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The normal range is enough detail. If her pattern is a little off, I don t get a (war ning). I am not bombarded with (warnings). The biggest (advantage) is th at I can see her whole day. Three of the caregivers stated its non-intrusive nature as an advantage. One caregiver explained, It is a non-intrusive way of monitoring her activity and basic well-being. Another stated, There are no cameras. He is very se nsitive to that. The se nsors are also hidden discretely, which is important or he would fiddle with them. Some other advantages mentione d were that it lets the caregiv er know when extra services may be needed in the users home. It also has an advantage over the push button systems in case the user fell and was unconscious. Finally, one care giver stated the cost was not bad for what it delivers. Perceived Disadvantages of the QuietCare System by the User Nine of the users identified disadvantages of which cost was the most frequently mentioned. Some of their statements follow. The cost was too much for my friend. The price may be hard to handle on some budgets. I have it for a trial; otherwise I couldnt affo rd to pay for it. I can t see how it helps me that much. I have people that check on me daily. Another disadvantage mentioned by the users was related to setting their system on vacation. In Chapter 4, the caregivers reported 5 false alarms in the last month due to the user being gone from the home and the system not set to vacation mode. This may have been more prevalent because the month befo re their interviews was the ho liday season. More people than usual may have been out of town and forgot to set their system to vaca tion. A sampling of the HMS users comments follow. If I dont let them know I am going ou t of town, it can cause problems. 52

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If I forget to put myself on vacation (a nd go out of town), it scares everyone. To get into the system on the website is complicated when putting it on vacation. A couple of participants thought the system required a large amount of equipment in the house. One stated, It is a lot of equipment in the house, but if I am going to have the system I need the equipment. Houses these days have a lot of equipment. The other stated, The base system takes a lot of room on the shelf. It has to be near the phone and mine is in the kitchen. One HMS user reported he does not like recei ving a low meal preparation warning when he eats out. He stated, If I am taken out for dinner, there will be a low meal preparation warning. So I have to wave my hand in front of the refrigerator before I leave. A low meal preparation warning would not produce an emergency alert to his caregiver, but may be more of an annoyance to him simply knowing low meal pr eparation was reported when he actually ate. A couple of HMS users were concerned about the systems accuracy. Their comments follow. Once I was taking cold medication every 4 hours and it reported none had been taken. I also do a lot of cooking and at times it has a meal preparation warning. Then one time it said I didnt get up and I had been up since 5 am taking care of my dogs. I was concerned this morning because if I am not up by ten it is supposed to go off. I used the bathroom at 5 and slep t late and it didn't go off. Perceived Disadvantages of the Qu ietCare System by the Caregiver When asked what the disadvantages of having the system were, 13 of the 30 HMS caregivers identified some disadvantages. Like the HMS users, the HMS caregivers mentioned cost most frequently. Some of their comments are below. The price is too steep fo r people on a fixed income. Everything costs way too much. It is out of reach for those who are elderly and retired at a lower income. The price is difficult for most seniors who need it. Those who can afford it go to a retirement community with all le vels of care or have personal care. 53

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The cost is high. It should be about 30-50 dollars a month. Depending on income, the cost could be prohibitive for some. Another disadvantage a few caregivers mentione d was the lag time between when an event occurs and when they are notified. A couple caregivers had concerns about the time between when a fall occurs in other areas of the home be sides the bathroom and when an alert would be sent. Bathroom falls are detected and dealt with di fferently than falls in other areas of the house. However, in a study by Gill, Williams, & Tinnetti (2000) looking at environmental hazards and nonsyncopal fall risk, more participants experi enced falls in the living room, bedroom, and kitchen than in the bathroom. Some of the HMS participants concerns are expressed below. Should he fall, I wish he didnt have to wait for 2 hours for help. A button to push may be nice. If something happens, there may be a 3-5 hour lag before I find out about it. A couple of the caregivers stated the website could use more explanation and is sometimes slow to respond. One caregiver stated the sensi tivity may be a disadvantage because it doesnt actually tell if the user swallowed the medicatio n. However, to see if the user swallowed the medication may necessitate the use of cameras a nd some participants identified the lack of cameras as an advantage. Like an HMS user, a caregiver stated a disadva ntage of the system as its reporting of low meal preparation when her mother goes out to dinner on Sundays. Anothe r caregiver stated a disadvantage as there are some false alarms lik e if the phone is off the hook, but I still want to know about it so it can be fixed. Another caregiver identified the competi ng use of the telephone line between the QuietCare system and the home computer as a di sadvantage since his mother is on the computer often and it causes problems with the QuietCare sy stem. When her computer is on, it ties up the 54

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phone line and that causes problems with the syst em. My mom is always on the computer, it is her life. I guess she should put another phone line in. A final comment was that use of the system may require a lifestyle change, It requires a bit of a lifestyle change. For example, my mom keeps her blood pre ssure medication on her nightstand. The rest of her medications are in the kitchen, which have the sensor by them. For me to actually see that she took her blood pressu re medication, she would have to move it and change her routine. Recommended Changes to the QuietCare System Five HMS caregivers and 3 users suggested changes related to putting the system on vacation. One caregiver would like it made clearer during the installation pr ocess of the need to put the system on vacation when the person is out of town. The others would like the process of putting the system on vacation made easier. Some of their comments are presented below. I wish my mom could notify them easier when she is going on vacation. It has to be done by computer. Improve the vacation setting. The computer isn't very smart about it. If say she is coming back at noon, I will get morning alerts for decreased activity. Other suggestions related to the ability to turn the system to a different setting when they go out for a meal or have company over. When she has company we get alerts for too much bathroom use. It would be nice if there was a way to let the system know there were visitors. Maybe a way he could override the syst em if he was going out to breakfast. Have an easy way to turn the system off when I go out. Another aspect caregivers and users recomm ended to change were increased range of monitoring (i.e. yard) and better ability to detect falls in the rest of the house. Some of their comments follow. 55

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Place a sensor low to the ground in some rooms to catch a fall. Have something to alert them if I fell in the house. I know it does if I fall in the bathroom, but I would like it to alert for the entire house. If I fell in the house, how coul d they tell I have fallen? Increase the distance to monitor out in the yard or connect somehow to a cell phone. If I go for a walk, I have to grab the phone and push the button. Maybe have a push button system attached to it. A few people would like to have additional sensors in the house or on the outside doors. Sensors are usually located in rooms the resident frequents regularly. Sensors may not be in every room of the house, such as extra bedrooms or rarely used family rooms. Participants comments follow. He has 2 bathroomsone he showers in and the other he uses the commode. It would be nice for us to know which one he has gone to. Also, it would be nice if the sensor at the door could tell us if he actually went out the door rather than by the door. I wonder if sensors should be added to his Florida room. Sometimes he goes out there. I wish it had a sensor to tell when I go out th e door into the garage. I could be passed out in the garage and they wouldn't know for a long time. Two caregivers suggested adding the ability to determine that medication was actually taken and the user didnt just go near the medication area. Medication areas may have a sensor in a cupboard or box with medications located in side or a sensor may be placed under a cabinet and over a counter where the medications are lo cated. The caregivers comments are below. I wish the medication and food intake were more exact, but that balances with intrusiveness. Something to make sure she has taken her medications and not just gone by them. Other participants offered some unique suggest ions. One caregiver ha d concerns that her loved one would wander from home and suggested to incorporate a GPS in to the system. I am looking into one that is an armband now. Anot her had experiences a false alert when the HMS 56

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user had gone out of town and not placed the system on vacation. The emergency services arrived at the home and were met by the caregiver. The caregiver explained the HMS system to the rescuer, who had never heard of the system and was very interested in learning about it. This caregiver suggested education for the local 911 services to make th em aware of the HMS system. Another caregiver suggested, More definitive instructions on how to enter the program on-line and enter (the users) parameters. I am not sure they are set appropriately for my mom. Like the wake time may be an hour too long. One participant suggested improving the marketing of the system, It is geared at older women. They should also aim at me n who have disabling conditions like MS or ALS. Finally, a participan t suggested the addition of a heart monitor for use at night in case a medical probl em occurred while in bed. At ni ght it doesn't tell if you have died, gone in a coma, or had a stroke. It w ouldn't know if anything was wrong with me from 8pm to 9am. Maybe include a wris t bracelet to monitor the heart. HMS User Privacy Seven of the 29 users described feeling a bit ap prehensive about the system at first because of privacy issues. A sampling of th eir comments is presented below. At first I felt perplexed and uncomfortable because I am a private person. I sort of felt self-conscious, but it wore off. I was not sure about it. I wa nted to know more. I sort of felt like it was a spy thing. I was a bit concerned because I wasn't sure what it would show. Now I am okay with it because it just shows the time I went in and not a picture of me in the bathroom. Even though some HMS users init ially had reservations because of privacy, all of the users reported that they were comfortable with the wa y the system monitors them and of those who responded all were comfortable with their caregivers view ing their information. The three users, who did not answer whether or not they were comfortable with their caregivers viewing their 57

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information, did not answer because they were unfamiliar with the website and felt they could not answer the question or did not have caregiver s who checked the website. These are the same 3 users who did not answer as to whether they be lieved their activity information was adequately protected on the website. Only one participant reported having a little concern of her privacy being invaded in using the QuietCare system. This user stated th at nobody checks her activity information on-line because they dont want to be bothered with it However, there was an incident where she unplugged her phone line for a period of time becau se she didnt want to be bothered. This resulted in the system sending an alert to her ne ighbor, who then came over to make sure she was all right. ICF Model When looking at the ICF model in relation to home monitoring, we see the implementation of home monitoring in the users environment ma y impact the other domain s of the model. For example, the home monitoring system may discove r a health issue before it becomes serious or life threatening. This allows the person to rema in active and participate in home and societal situations. This relationship as described earlier is denoted by the bidirectional arrows in the model (Figure 1-1). For the ICF to adequately re present the relationships in this study, it may need to be expanded. The introduction of th e HMS into the users environment has the potential to impact the user in various domains, but also may impact the caregiver. In this study, the caregivers expressed greater peace of mind with the monitoring of the user. One caregiver stated, The fact that you can go on with your life and not have to worry about the aging parent (is an advantage). Perhaps the peace of mind allows the caregiver to become more active and participate in other home and societal functions. 58

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Limitations While a survey is a useful method to provide an overview of a topic, it has limitations. The major limitation is that it relies on self-report. Deception, poor memory, and misunderstanding of items may lead to inaccurate data. As for deception, people are more likely to give truthful answers to sensitive topics on a paper questionnaire than during a telephone survey (Bourque & Fielder, 2003). Some of the questions asked about sensitive material such as emergencies experienced and physical abilities. As an example of memory impacting the study, participants were asked how long they had us ed the HMS and at times could only provide a rough estimate because they were not able to remember the exact month the system was installed. Finally, the item regard ing if the system made them feel more or less independent was unanswered 62% of participants because responden ts felt it did not apply. This is discussed further below. Even though 71% of the potential participan ts responded to the su rvey, the non-response by some may enter bias into the study. Those who chose not to respond may have felt negatively towards the system and been uncomfortable w ith expressing themselves. In addition, nonresponse occurred to some of the items within the surv eys, which could have introduced bias. For example, 62% of the respondents did not say whether the system made them feel more or less independent, but refused to answer because they felt the question did not apply to them. Others answered this question based on the choices provided, but if given th e choice of neither or does not apply may have picked a different answer. Non-response to this item could also make it appear as if the system really does ma ke people feel more independent because 100% of those who responded to the item stated that it makes them feel more independent. Another limitation of the study was the relativ ely short amount of time the HMS users had utilized the QuietCare system. Had the averag e length of use been longer, more emergency 59

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experiences might have been reported and discus sed. In addition, the participants might have expressed more ideas to improve the system. Th e average length of use was 7 months and the 2 individuals who experienced emergencie s used the system for 8-12 months. Due to the relatively small sample size and obtaining the sample through one distributor, the results may not generalize to the overall population of QuietC are users/ caregivers or other HMS users/ caregivers. Future Research While a survey provided an overview of th e users and caregivers perceptions of the QuietCare system, an in-depth qualitative study w ould also be an appropriate method for future research. A qualitative study may provide additi onal insight into important constructs to study and assess when examining the user a nd caregiver perceptions of the HMS. In addition, some of the unique findings of th is study brought insight into future areas of research. Not only should the home monitoring of frail, older adults be further explored, but also the home monitoring of younger people with chronic disabilities or illnesses as well as those with mental health disorders. Based on results of this study, I would expect these populations to also benefit from home monito ring and behavioral tracking. Another area for exploration is the acceptanc e of home monitoring among different racial groups. Twenty-eight of the 29 HMS users were white. When the distributor was asked about the predominantly white customers, they respond ed that one African-American customer used the system for a few months and then had it removed from the home. They were unsure why minorities are not as likely to subscribe to the HMS. In this study, users completed the OARS-ADL su bset so a description of their functional abilities could be obtained. In the future, a func tional measure could be used to help describe when the system is most beneficial or no longer enough. 60

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Recently, assisted living facilities in various parts of the nation have been installing the QuietCare system. Future research may explore how the facilities are usi ng the system. Another interesting area would be to compare variables of interest (i.e. quality of life, quality of care) between a group of residents in assisted living who use the Qu ietCare system and a group who does not. Finally, it would be beneficial to determin e if increased length of use with the HMS provides more information on responding to emerge ncies and other aspects of the system. Also community-based QuietCare users could be comp ared to community-based older adults who do not utilize home monitoring on various outcome measures, such as functional ability and hospitalization. Implications and Conclusions As illustrated in the findings of this study, the HMS users and caregivers were satisfied with the system and found it easy to use. It has provided both the users and the caregivers with peace of mind knowing if something were to happen in the home, the caregiver would be notified in a reasonable amount of time. The HMS also provided the caregiver with necessary information about the users day and activities while still allowing the user to maintain a comfortable level of privacy. The findings of this research suggest the HMS system is meeting the users and caregivers needs. The HMS system has detected the em ergencies which have occurred and has alerted users and caregivers to other potential problems a llowing them to intervene. While very few of the users ever experienced an emergency and required assistance from the system, nearly all participants stated the HMS has helped them. A home monitoring system such as QuietCare may be a solution for people who forget to wear, or refuse to wear, the pendant needed for an actively operated emergency response system. 61

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However, the HMS explored in this study was more than an emergency response system in that several participants were using it to track behavi ors and subsequently prevent potential problems. In that regard, this system may be a more powerful tool to help an older a dult age in place than a system that solely provides a method of calling for help in an emergency. 62

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APPENDIX A HMS USER SURVEY 1. When did you have QuietCare installed? _____ month _____ year 2. Who told you about QuietCare? (Examples: daughter/ son, friend, doctor) ________________________________________________________________ 3. At first how did you feel about getting QuietCare? __________________________________________________________________ __________________________________________________________________ 4. Why did you get QuietCare? __________________________________________________________________ __________________________________________________________________ 5. Has QuietCare helped you? _____ Yes (continue below) _____ No (Go to #8) A. How has QuietCare helped you? ____________________________________________________________ ____________________________________________________________ 6. What kinds of things do you exp ect QuietCare to help you with? __________________________________________________________________ __________________________________________________________________ 7. Have you ever used a personal emergency response system, such as Lifeline? _____ Yes (continue below) ____ No (Go to #6) A. When did you get the personal emergency response system? _____ month _____ year 63

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B. How long did you use it? For _____ month(s) or year(s) 8. Before subscribing to QuietCare, did you consider any other alternatives to using the QuietCare system? _____ Yes (continue below) _____ No (Go to #7) A. What were they? ____________________________________________________________ 9. How many times in the last month did you have an emergency and need help? _____ times (If go to question #12) A. Did QuietCare respond to all emer gencies within the last month? _____ Yes (Go to #10) _____ No (continue below) B. What types of emergencies did QuietCare miss? ____________________________________________________________ ____________________________________________________________ ____________________________________________________________ 10. When was the last time you used QuietCare to respond to an emergency? __________________________________________________________________ __________________________________________________________________ A. What type of emergency was it? ____________________________________________________________ ____________________________________________________________ ____________________________________________________________ 64

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B. About how long did it take for someone to respond to your emergency using the QuietCare system? ________ Hours _______ Minutes C. In your opinion, was the response time fast enough? _____ Yes _____ No 11. In the past month, has QuietCare called for help when none was needed? _____ Yes (continue below) _____ No (Go to #17) A. How many times in the past month has this happened? _____ times B. Why do you think this happened? ____________________________________________________________ ____________________________________________________________ ____________________________________________________________ 12. Is the QuietCare system easy or difficult to use? _____ Easy (Go to A) _____ Difficult (Go to B) A. Is it very easy or somewhat easy to use? _____ Very easy to use _____ Somewhat easy to use B. Is it very difficult or somewhat difficult to use? _____ Very difficult to use _____ Somewhat difficult to use 13. Does QuietCare make you feel more secure or less secure? _____ More (Go to A) _____ Less (Go to B) A. Does QuietCare make you feel much more secure or a little more secure? _____ Much more secure _____ A little more secure 65

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B. Does QuietCare make you feel much less secure or little less secure? _____ Much less secure _____ A little less secure 14. Does QuietCare make you feel mo re independent or less independent? _____ More (Go to A) _____Less (Go to B) A. Does QuietCare make you feel much more independent or a little more independent? _____ Much more independent _____ A little more self-confident B. Does QuietCare make you feel mu ch less independent or a little less independent? _____ Much less independent _____ A little less independent 15. Have you ever considered discontinuing QuietCare? _____ Yes (continue below) _____ No (Go to #18) A. Why have you considered discontinuing QuietCare? ____________________________________________________________ ____________________________________________________________ 16. What are some advantages of having the QuietCare system? __________________________________________________________________ __________________________________________________________________ __________________________________________________________________ 17. What are some disadvantages of having the QuietCare system? __________________________________________________________________ __________________________________________________________________ __________________________________________________________________ 66

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18. What would you change about QuietCare? __________________________________________________________________ __________________________________________________________________ __________________________________________________________________ 19. Is there anything you wish QuietC are did that it does not do now? _____ Yes (continue below) _____ No (Go to #22) A. What do you wish QuietCare did? ____________________________________________________________ ____________________________________________________________ ____________________________________________________________ 20. Would you say you are satisfied or dissatisfied with QuietCare? _____ Satisfied (Go to A) _____Dissatisfied (Go to B) A. Are you very satisfied or some what satisfied with QuietCare? _____ Very satisfied _____Somewhat satisfied B. Are you very dissatisfied or somewh at dissatisfied with QuietCare? _____ Very dissatisfied _____ Somewhat dissatisfied 21. Have visitors ever commented on the system? _____ Yes (continue below) _____ No (Go to #24) A. What comments have you heard? ____________________________________________________________ ____________________________________________________________ ____________________________________________________________ 67

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22. Are you comfortable or uncomfortable w ith your activity bei ng monitored in the way QuietCare works? _____ Comfortable (Go to A) _____ Uncomfortable (Go to B) A. Are you very comfortable or somewhat comfortable with your activity being monitored in the way QuietCare works? _____ Very comfortable _____Somewhat comfortable B. Are you very uncomfortable or somewhat uncomfortable with your activity being monitored in the way QuietCare works? _____ Very uncomfortable _____ Somewhat uncomfortable 23. Do you know about the website that disp lays your activity information to people who are authorized to view it? _____ Yes _____ No 24. Have you seen the website that displays your activity information? _____ Yes _____ No 25. Do you ever go on the website yourself to view your information? _____ Yes _____ No 26. What things are you most interested in on the website? __________________________________________________________________ __________________________________________________________________ 27. Who has access to your activity info rmation on the QuietCare website? __________________________________________________________________ __________________________________________________________________ 68

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28. What kinds of information can they see? __________________________________________________________________ __________________________________________________________________ __________________________________________________________________ 29. Are you comfortable or uncomfortable with those who can access your activity information being able to view it? _____ Comfortable (Go to A) _____ Uncomfortable (Go to B) A. Are you very comfortable or somewh at comfortable with those who can access your activity being able to view it? _____ Very comfortable _____ Somewhat comfortable B. Are you very uncomfortable or somewhat uncomfortable with those who can access your activity being able to view it? _____ Very uncomfortable _____ Somewhat uncomfortable 30. Are you concerned about your privacy being invaded in using the QuietCare system? _____ Yes (Go to A) _____ No (Go to #29) A. Are you very concerned or a little concerned about your privacy being invaded? _____ Very concerned _____ A little concerned 31. Do you believe your activity information is adequately protected on the QuietCare website? _____ Yes _____ No 32. Do you trust that only the authorized people are able to view your information? 69

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_____ Yes _____ No 33. How old are you? ______ Years old 34. Gender: Male ____ Female: ____ 35. Would you describe yourself as African Am erican, Caucasian, Hispanic, Asian, or another race? _________________________________________________________________ 36. What level of education did you complete? ____ Grade school (k-6) ____ Some college _____ Doctorate/ MD ____ Middle school (7-8) ____ Bachelors degree ____ High school (9-12) ____ Masters degree 37. Are you married, widowed, divorced, single, other? _____ Married _____ widowed _____ divorced _____ single _____ other 38. How many children do you have? _____ Children 39. How many of your children live within 20 miles of your home? _____ Children within 20 miles 40. Do you own or rent your home? _____ Rent _____ Own 41. What type of a home do you live in? For example, a single family home, mobile home, condo, duplex, etc. ____ Single family house ____ Multi-unit building (apt/ condo) 70

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____ Mobile home ____ Semi-detached home (duplex/ town-home) ____ Other 42. How long have you lived there? _______ years 71

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APPENDIX B MULTIDIMENTIONAL FUNCTIONAL ASSESSM ENT OF OLDER ADULTS: SELF CARE CAPACITY SUBSECTION Now I would like to ask you about some of the activities of daily living, things t hat we all need to do as part of our daily lives. I would like to know if you can do these activities without any help at all, or if you need some help to do them, or if you c ant do them at all. (BE SURE TO READ ALL ANSWER CHOICES IF APPLICABLE IN THE QUESTIONS BELOW TO THE RESPONDENT) Instrumental ADL 1. Can you use the telephone? 2 without help, including l ooking up numbers and dialing; 1 with some help (can answer the phone or dial operator in an emergency, but need a special phone or help in getting the number or dialing); or 0 are you completely unable to use the telephone? not answered 2. Can you get to places out of walking distance 2 without help (drive your own car, or travel alone on buses, or taxis); 1 with some help (need someone to help you or go with you when traveling); or 0 are you unable to travel unless emer gency arrangements are made for a specialized vehicle like an ambulance? Not answered 3. Can you go shopping for groceries or clothes (ASSUMING SUBJECT HAS TRANSPORTATION) 72

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2 without help (taking care of all shopping needs yourself, assuming you had transportation); 1 with some help (need someone to go with you on all shopping trips); or 0 are you completely unable to do any shopping? Not answered 4. Can you prepare your own meals 2 without help (plan and cook full meals yourself); 1 with some help (can prepare some things but unable to cook full meals yourself; or 0 are you completely unable to prepare any meals? Not answered 5. Can you do your housework 2 without help (can clean floors, etc); 1 with some help (can do light housewor k but need help with heavy work); or 0 are you completely unable to do any housework? Not answered 6. Can you take your own medicine 2 without help (in the righ t dose at the right time) 1 with some help (able to take medicine if someone prepares it for you and/ or reminds you to take it); or 0 are you completely unable to take your medicines? not answered 73

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7. Can you handle your own money? 2 without help (write ch ecks, pay bills, etc); 1 with some help (manage day-to-day buying but need help with managing your checkbook and paying your bills); or 0 are you completely unable to handle money? not answered Physical ADL 1. Can you eat 2 without help(able to f eed yourself completely); 1 with some help (need he lp with cutting etc); or 0 are you completely unable to feed yourself? Not answered 2. Can you dress and undress yourself? 2 without help (able to pick out clothes, dress and undress self); 1 with some help; or 0 are you completely unable to dress and undress yourself? Not answered 3. Can you take care of your own appearan ce, for example combing your hair and (for men) shaving 2 without help; 1 with some help; or 0 are you completely unable to maintain your appearance yourself? Not answered 74

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4. Can you walk 2 without help (ex cept from a cane) 1 with some help from a person or with the use of a walker, or crutch, etc.; or 0 are you completely unable to walk? Not answered 5. Can you get in and out of bed 2 without help or aids; 1 with some help (either from a person or with the aid of some device); or 0 are you totally dependent on someone else to lift you? Not answered 6. Can you take a bath or shower 2 without help; 1 with some help (need help getting in and out of the tub, or need special attachments on the tub); or 0 are you completely unable to bathe yourself? Not answered 7. Do you ever have trouble getting to the bathroom on time? 2 No 0 Yes 1 have a catheter or colostomy Not answered 75

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If YES ask: a. How often do you wet or soil yourself (either day or night)? 1 Once or twice a week 2 Three times a week or more Not answered 8. Is there someone who helps you with such things as shopping, housework, bathing, dressing, and getting around? 1 Yes 0 No not answered If YES, ask a and b. a. Who is your major helper? Name________________________ Relationship ____________________ b. Who else helps you? Name _______________________ Relationship ____________________ 76

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APPENDIX C HMS CAREGIVER SURVEY 1. Why do you think your relati ve or friend decided to get the Quiet Care system? __________________________________________________________________ __________________________________________________________________ 2. What were the alternatives to getting the Quiet Care system? __________________________________________________________________ __________________________________________________________________ 3. Has the Quiet Care system helped you? _____ Yes (Go to A) _____ No (Go to # 4) A. How has the QuietCare system helped you? ____________________________________________________________ ____________________________________________________________ 4. Have you ever thought about discontinuing Quiet Care? _____ Yes (Go to A) _____ No (Go to #5) A. Why have you considered discontinuing QuietCare? _____ Lack of need _____ Cost _____ False alarms _____ Other, what were the other reasons? ____________________________________________________________ 5. How many times per day or week do you check on your relative or friend using the QuietCare website? 77

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_____ times per day or _____ times per week 6. In the past month, have you received al erts for an emergency from QuietCare? _____ Yes (Go to A) _____ No (Go to #7) A. How often do you receive emergency alerts? _____ times per day or _____ times per week or _____ times per month B. When was the last time you received an emergency alert from QuietCare? ____________________________________________________________ ____________________________________________________________ C. What type of emergency was the alert for? ____________________________________________________________ ____________________________________________________________ D. What was the outcome of the situation? ____________________________________________________________ ____________________________________________________________ E. Do you feel that QuietCare alerted you to the emergency within a reasonable amount of time? _____ Yes _____ No F. How long did it take for QuietCare to alert you to the emergency from the time it arose? ______ hours ______ minutes 78

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7. How do you prefer to receive alerts? _____ telephone call _____ notice on website _____ e-mail _____ pager _____ text message _____ other, if other how ____________________________________________ 8. Is the QuietCare system easy or difficult to use? _____ Easy (Go to A) _____ Difficult (Go to B) A. Is QuietCare extremely easy to use or somewhat easy to use? _____ Extremely easy to use _____ Somewhat easy to use B. Is the QuietCare system extremely di fficult to use or somewhat difficult to use? _____ Extremely difficult to use _____ Somewhat difficult to use i. What aspects are difficult? ______________________________________________________ ______________________________________________________ ______________________________________________________ 9. In the last month, did you not receive an alert when your re lative needed help? _____ Yes (Go to A) _____ No (Go to # 10) A. What type of emergency was it? ____________________________________________________________ ____________________________________________________________ 79

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B. Why do you think you did not receive an alert? ____________________________________________________________ ____________________________________________________________ 10. Have you received false alarms in the last month? _____ Yes (Go to A) _____ No (Go to # 11) A. How often do you receive false alarms? _____ times a day, _____ times a week, _____ times a month B. For what type of emergency was the last false alarm you received? ____________________________________________________________ ____________________________________________________________ C. Why do you think you received an alert? ____________________________________________________________ ____________________________________________________________ 11. What are some advantages of having the Quiet Care system? __________________________________________________________________ __________________________________________________________________ 12. What are some disadvantages of having the QuietCare system? __________________________________________________________________ __________________________________________________________________ 13. What would you change about the QuietCare system? __________________________________________________________________ __________________________________________________________________ 80

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14. What are some things you wish the Quie t Care system did that it does not do now? ___________________________________________________________________ ___________________________________________________________________ 15. Are you satisfied or dissatisfi ed with the QuietCare system? _____ Satisfied (Go to A) _____ Dissatisfied (Go to B) A. Are you extremely satisfied or somewhat satisfied? _____ Extremely satisfied _____ Somewhat satisfied B. Are you extremely dissatisfied or somewhat dissatisfied? _____ Extremely dissatisfied _____ Somewhat dissatisfied 16. About how many years have you been caring or providing assistance for your relative or friend? _____ years 17. About how many hours each day or week do you currently spend caring for your relative or friend, including chores and errands? _____ hours per day _____ hours per week 18. Does your relative have any other help at home now, such as cleaning services or a home health aide? _____ Yes (Go to A) _____ No (Go to #19) A. What type of help do they have? 81

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____________________________________________________________ ____________________________________________________________ ____________________________________________________________ B. About how much time per day or week does that person help out? _____ hours per day _____ hours per week 19. How old are you? ______ Years old 20. Gender: Male ____ Female ____ 21. Would you describe yourself as African Am erican, Caucasian, Hispanic, Asian, or another race? _____________________________________________________________ 22. What level of education have you completed? ____ Grade school (k-6) ____ Some college _____ Doctorate/ MD ____ Middle school (7-8) ____ Bachelors degree ____ High school (9-12) ____ Masters degree 23. Are you married, single, widowe d, divorced, or other status? _____ Married ____ Single ____ Widowed ____ Divorced _____ Other 24. How many children do you have? _____ Children A. Are any of them living at home? _____ Yes (Go to B) _____ No (Go to # 29) 82

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B. How many are living at home? _____ Children living at home 29. What is your relationship to the QuietCare user? ____ Spouse, ____ Friend, _____ Child, ____ Other, who?___________ 83

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LIST OF REFERENCES Allen, B. (1996). An integrated approach to smart house technology for people with disabilities. Medical Engineering and Physics, 18(3), 203-206. Arthanat, S., Nochajski, S., & Stone, J. (2004). The international classification of functioning, disability and h ealth and its application to cognitive disorders. Disability and Rehabilitation, 26 (4), 235-245. Bayer, A., & Harper, L. (2000). Fixing to Stay: A national survey of housing and home modification issues. Washington, DC: AARP. Bayliss, E.A., Ellis, J.L., & Steiner, J.F. (2007). Barriers to self-management and qualityof-life outcomes in seniors with multimorbidities. Annals of Family Medicine, 5(5), 395-402. Bernstein, M. (2000). Low-tech personal em ergency response systems reduce costs and improve outcomes. Managed Care Quarterly, 8 (1), 38-43. Binder, B., Hofmann-Wellenhof, R., Salmhofer, W., Okcu, A., Kerl, H., & Soyer, P. (2007). Teledermatological monitoring of le g ulcers in cooperation with home care nurses. Archives of Dermatology, 143 (12), 1511-1514. Blieszner, R., Roberto, K.A., & Singh, K.T. ( 2001). The helping networks of rural elders: Demographic and social psychologi cal influences on service use. Ageing International, 27 (1), 89. Bourque, L., & Fiedler, E. (2003). How to conduct telephone surveys. Thousand Oaks, CA: Sage Publications, Inc. Brown, S., Hine, N., Sixsmith, A., & Garn er, P. (2004). Care in the community. BT Technology Journal, 22 (3), 56-64. BT Exact. (2005). Independent living Retrieved July 18, 2006, from http://www.btplc.com/Innovation/HelpingSociety/independant/index.htm Bureau of Labor Statistics, U.S. Department of Labor. (2007). Career guide to industries: 2008-2009 edition, Health care. Retrieved February 7, 2008, from http://www.bls.gov/oco/cg/cgs035.htm Chumbler, N., Mann, W. C., Wu, S., Schmid, A., & Kobb, R. (2004). The association of home-telehealth use and care coordinati on with improvement of functional and cognitive functioning in frail elderly men. Telemedicine Journal and E-Health, 10(2), 129-137. Cnow Inc. (2006). Products: Cnow's video program. Retrieved July 20, 2006, from http://www.cnowinc.com/products.html. 84

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BIOGRAPHICAL SKETCH Jessica L. Johnson completed her B.A. in health sciences and M.A. in occupational therapy at The College of St. Scholastica in Duluth, MN. Jessica entered the University of Floridas rehabilitation science doctoral program in August 2003. She was granted a 4-year Alumni Fellowship to pursue her educational goals. Du ring her fellowship, she worked as a research assistant in the Rehabilitation E ngineering Research Center on T echnology for Successful Aging. The assistantship led to Jessicas participation in research st udies, 3 peer-reviewed journal articles, 2 book chapters, and her in terest in studying methods of a ssisting older adults to remain safe and independent in their homes. 90