Evidence-based Synthesis Program Department of Veterans Affairs

Health Services Research & Development Service

November 2012

Prepared for:

Department of Veterans Affairs

Veterans Health Administration

Quality Enhancement Research Initiative

Health Services Research & Development Service

Washington, DC 20420

Prepared by:

Evidence-based Synthesis Program (ESP) Center

Portland VA Medical Center

Portland, OR

Devan Kansagara, M.D., M.C.R., Director

Mobile Applications and

Internet-based Approaches

for Supporting

Non-professional Caregivers:

A Systematic Review

Investigators:

Principal Investigator: 

Edward A. Dyer, M.D.

Co-Investigators: 

Devan Kansagara, M.D., M.C.R.

D. Keith McInnes, Sc.D., M.Sc.

Michele Freeman, M.P.H.

Susan Woods, M.D., M.P.H. 
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PREFACE

Quality Enhancement Research Initiative’s (QUERI) Evidence-based Synthesis Program 

(ESP) was established to provide timely and accurate syntheses of targeted healthcare topics 

of particular importance to Veterans Affairs (VA) managers and policymakers, as they work to 

improve the health and healthcare of Veterans. The ESP disseminates these reports throughout 

VA.

QUERI provides funding for four ESP Centers and each Center has an active VA affiliation. The 

ESP Centers generate evidence syntheses on important clinical practice topics, and these reports 

help:

• develop clinical policies informed by evidence,

• guide the implementation of effective services to improve patient 

outcomes and to support VA clinical practice guidelines and 

performance measures, and 

• set the direction for future research to address gaps in clinical 

knowledge.

In 2009, the ESP Coordinating Center was created to expand the capacity of QUERI Central 

Office and the four ESP sites by developing and maintaining program processes. In addition, 

the Center established a Steering Committee comprised of QUERI field-based investigators, 

VA Patient Care Services, Office of Quality and Performance, and Veterans Integrated Service 

Networks (VISN) Clinical Management Officers. The Steering Committee provides program 

oversight, guides strategic planning, coordinates dissemination activities, and develops 

collaborations with VA leadership to identify new ESP topics of importance to Veterans and the 

VA healthcare system.

Comments on this evidence report are welcome and can be sent to Nicole Floyd, ESP 

Coordinating Center Program Manager, at nicole.floyd@va.gov.

Recommended citation: Dyer EA, Kansagara D, McInnes DK, Freeman M, Woods S. Mobile 

Applications and Internet-based Approaches for Supporting Non-professional Caregivers: A 

Systematic Review. VA-ESP Project #05-225; 2012.

This report is based on research conducted by the Evidence-based Synthesis Program 

(ESP) Center located at the Portland VA Medical Center, Portland OR funded by the 

Department of Veterans Affairs, Veterans Health Administration, Office of Research and 

Development, Quality Enhancement Research Initiative. The findings and conclusions 

in this document are those of the author(s) who are responsible for its contents; the 

findings and conclusions do not necessarily represent the views of the Department 

of Veterans Affairs or the United States government. Therefore, no statement in this 

article should be construed as an official position of the Department of Veterans Affairs. 

No investigators have any affiliations or financial involvement (e.g., employment, 

consultancies, honoraria, stock ownership or options, expert testimony, grants or patents 

received or pending, or royalties) that conflict with material presented in the report.
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TABLE OF CONTENTS

Executive Summary

Background.................................................................................................................................................... 1

Methods......................................................................................................................................................... 1

Results ........................................................................................................................................................... 2

Discussion...................................................................................................................................................... 4

Conclusion..................................................................................................................................................... 5

Definitions And Abbreviations .................................................................................................. 6

Introduction................................................................................................................................................ 8

Methods

Topic Development...................................................................................................................................... 10

Search Strategy............................................................................................................................................ 10

Study Selection............................................................................................................................................ 10

Data Abstraction .......................................................................................................................................... 12

Study Quality............................................................................................................................................... 12

Data Synthesis............................................................................................................................................. 12

Results

Literature Flow ............................................................................................................................................ 13

Key Question #1. How does the use of consumer health information technologies (CHIT) by 

non-professional caregivers of adult patients with chronic illnesses or disability, or by 

such patients who rely on a non-professional caregiver, affect outcomes for caregivers, 

patients, clinical process measures, and healthcare utilization?.................................................................. 14

Key Question #2. What lessons can be learned from studies evaluating consumer health 

information technologies that specifically target the parents/caregivers of children?................................. 28

Key Question #3. What are the major gaps in the consumer health information technology 

literature serving non-professional caregivers of adult patients with regards to technology 

development, availability, and/or evaluation? ............................................................................................. 38

Discussion ...................................................................................................................................................... 42

Limitations................................................................................................................................................... 45

Conclusion................................................................................................................................................... 45

References.................................................................................................................................................... 48
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Tables

Table 1. Characteristics and findings of studies of consumer health information technology 

interventions to support non-professional caregivers of adults with chronic illness or disability, 

stratified by care-recipient population......................................................................................................... 15

Table 2. Characteristics and findings of studies of consumer health information technology 

interventions to support non-professional caregivers of children with chronic illness or disability........... 31

Table 3. Summary of the functionalities available in health informatics interventions to 

support non-professional caregivers, stratified by care-recipient population.............................................. 39

Figure

Figure 1. Literature Flow......................................................................................................................... 13

Appendix A. Search Strategy................................................................................................... 55

Appendix B. Inclusion/Exclusion Criteria...........................................................56
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DEFINITIONS AND ABBREVIATIONS

The following abbreviations are used throughout this document:

ACTION Assisting Carers using Telematics Interventions to meet Older Persons’ Needs

AD Alzheimer’s disease

ADHD Attention deficit and hyperactivity disorder

BSFC Burden Scale for Family Caregivers

BSI Brief Symptom Inventory

CAI Caregiver Appraisal Inventory

CG Caregiver, non-professional family members, friends, or community members

CHESS Comprehensive Health Enhancement Support System

CHIT Consumer health information technologies, defined as interactive technologies 

that provide targeted or tailored health information and/or self-management tools 

or applications designed to support consumers’ management of their health, health 

care, or health information

CR Care-receiver/care-recipient, whether adult, child, or patient

CSES Caregiver Self-Efficacy Scale

CSP Customized Sleep Profile

CVA Cerebrovascular accident, stroke

ER Emergency room

HPN Home Parenteral Nutrition

ICSS Internet-based Caregiver Support Service

ICT Information Computing Technology

ICU Intensive care unit

IRC Internet resources

IVR Interactive voice response

KQ Key question

NR Not reported

OFPS Online Family Problem-Solving

PCP Primary care physician

PDA Personal digital assistant

PDF Portable Document Format, a file format used to represent documents for display 

on computers, smartphones and tablets

PIES Prostate Interactive Education System
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PTSD Post-traumatic stress disorder

QOL Quality of life

RCT Randomized controlled trial

SCL-90 Symptom Checklist-90

SMS Short Message Service, a protocol that supports text messaging for mobile phones

SNF Skilled nursing facility

SRG Stress-Related Growth

SUS System Usability Scale

SWLS Satisfaction with Life Scale

TBI Traumatic brain injury

TOPS Teen Online Problem Solving

Tx Treatment

VA Veterans Affairs, United States Department of

VHA Veterans Health Administration

WAMMI Website Analysis and Measurement Inventory

WECARE Web Enabled Caregiver Access to Resources and Education
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EVIDENCE REPORT

INTRODUCTION

The Department of Veterans Affairs (VA) recognizes the essential contribution of nonprofessional caregivers, who are an important source of physical, emotional and other support 

to ill or injured Veterans, including facilitating the ability for Veterans to remain in their homes. 

With the increased numbers of Veterans who require care and assistance for traumatic brain 

injuries (TBI), physical impairments, serious mental illness, and dementia there is a growing 

demand for spouses, parents or other family members and friends to assume the role of caregiver. 

Given the responsibility and diversity of tasks, and the ever-increasing reliance upon them by 

the healthcare system, caregivers themselves face impacts on their own quality of life, physical 

and mental wellbeing, and ability to manage their own healthcare needs. These impacts have 

been shown to be more frequent and severe for the caregivers of patients with illnesses such as 

dementia, neurologic disorders, and paralysis and likely have implications for Veterans’ health 

status as well. 

Health information technology advocates have long heralded the benefits of computerized tools 

used by patients and families for the delivery of healthcare information, education, and behavioral 

interventions. Opportunities for electronic health-related tools to engage patients in their healthcare 

and improve their health continue to increase as the consumer technology market expands rapidly 

and Internet penetration rises. However, the practical value and actual use of tools is challenged by 

a number of factors.1-3 To be utilized as intended, consumer health information technology (CHIT) 

needs to be perceived as valuable, convenient, and relatively intuitive to use. Finally, these tools 

need to “fit” into an individual’s workflow; for a patient with a medical condition, this represents 

seamless integration into one’s activities of daily living.4

While a patient may not have access to technology, a loved one or caregiver could potentially 

access electronic information and tools on a patient’s behalf. It is estimated that 34 to 52 million 

American adults provide home caregiving to another individual at some point in any given 

year.5 Non-professional caregivers are typically not members of a licensed profession such 

as nursing, medicine, social work or psychology; instead, they are often family members or 

friends who either volunteer or work for small wages in order to coordinate care for the patient. 

Caregiver tasks range from basic (meal preparation, transportation to appointment) to more 

skilled (assistance with physical transfer, healthcare coordination, medication dispensing) and 

often require non-traditional work hours. Caregivers, in fact, increasingly look to the Internet 

for support and assistance with these tasks. According to Pew Internet & American Life national 

surveys, nearly half of those looking for health information online reported that their last 

search was on behalf of someone else.6 In the same surveys, 70 percent to 80 percent of 

caregivers sought health information online, and 26 percent sought peer support online with 

other caregivers.7

Gaps remain in technology access across populations. Internet access continues to climb among 

young and middle-aged adults, yet those aged 65 and older with less than a high school education 

or living in a rural area continue to have lower rates of access.8

 Yet gaps in access continue to 

narrow and consumer demand for connecting to online information increases. Internet access 
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increased from 46 percent of all U.S. adults in 2000, to 78 percent in 2010. Veterans and nonVeterans use the Internet at the same rate.9

 A total of 83 percent of adults now own a cell phone, 

with 77 percent ownership among those with an annual income under $30,000, and 56 percent 

among those aged 65 and older. Notably, the proportion of black or non-white Hispanic adults 

who own a cell phone was higher than the general population (44 versus 35 percent) as of May, 

2011.8

The Veterans Health Administration (VHA) is developing applications for mobile devices 

intended for use by caregivers of chronically ill or disabled Veterans. The objective of this report 

is to identify studies of consumer health information technology applications that aim to support 

the needs of non-professional caregivers, examine the usage and effects of CHIT applications 

on caregiver burden and patient outcomes of interest, and identify gaps in the literature. Because 

some of the earliest research in caregiver needs and support is in pediatric populations, we also 

reviewed the pediatric literature to evaluate potential caregiver technology applications that may 

be further advanced or more rigorously evaluated than in the literature pertaining to caregivers of 

adult patients, and discuss parallels that can be drawn from pediatric literature.
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METHODS

TOPIC DEVELOPMENT

The topic was nominated by the Office of Informatics and Analytics. The research questions for 

this systematic review were developed after a topic refinement process that included consultation 

between investigators, stakeholders, and content experts. 

Key Question #1. How does the use of consumer health information technologies (CHIT) by nonprofessional caregivers of adult patients with chronic illnesses or disability, or by such patients 

who rely on a non-professional caregiver, affect the following outcomes:

a. Caregiver-centered outcomes?

b. Patient-centered outcomes?

c. Process measures?

d. Healthcare utilization outcomes?

Key Question #2. What lessons can be learned from studies evaluating consumer health 

information technologies (CHIT) that specifically target the parents/caregivers of children?

Key Question #3. What are the major gaps in the consumer health information technology 

literature serving non-professional caregivers of adult patients with regards to technology 

development, availability, and/or evaluation?

SEARCH STRATEGY

To systematically identify relevant articles, a research librarian conducted electronic searches 

of multiple databases (MEDLINE® via PubMed®, Embase®, IEEE Xplore, AMIA Symposium 

Proceedings, Healthcare Information and Management Systems Conferences, Med 2.0, and 

Health 2.0) using terms for non-professional caregivers and mobile applications, including but 

not limited to terms for handheld/tablet computers, Internet based, wireless/mobile technology, 

iPad, cellular/mobile/android/smart phone, m-health, SMS, text messaging, and informatics 

application. Appendix A shows the search strategy and the initial yields from each database. We 

obtained additional articles from systematic reviews, reference lists of pertinent studies, reviews, 

editorials, and by consulting experts. 

We conducted a primary review of the literature yielded by the electronic search, and manually 

screened the bibliographies of included primary studies and any systematic or nonsystematic 

reviews that were identified. 

STUDY SELECTION

Reviewers trained in the critical analysis of literature assessed the titles and abstracts for 

relevance. English-language articles included at the abstract stage underwent full-text screening 

by one investigator (ED, KM, MF, or DK), using prespecified inclusion criteria (Appendix B). 

We included studies either specifically enrolling a cohort of adult, non-professional, non-robot 

caregivers of adult patients (KQ1) or children (KQ2) with chronic illnesses or disabilities, 
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or reporting caregiver outcomes. As this was an exploratory review and we anticipated few 

controlled trials would have been published, we did not limit by study design. We defined 

interventions and outcomes of interest as follows: 

Interventions

Health information technologies are not currently limited by the device or operating system on 

which the function is available. We therefore considered technologies, applications, or functions 

that could be used via desktop computer, tablet computer, cell phone, smart phone, and/or 

personal digital assistant (PDA).

For the purposes of this report, studies were included if they utilized patient-facing and/or 

caregiver-facing interactive computerized health information technology. Such CHIT interventions 

include one or more of the applications listed in the taxonomy below:

• Education/skills: education and skill-building, such as topic-specific information, 

coaching modules, Question & Answer libraries, community resource information

• Self-care: decision aids, self-assessment with feedback, self-monitoring of conditions or 

care, patient portal access to electronic health record data

• Peer-to-peer communication: online forums, bulletin boards, listserv, email, chat and/or 

online support groups, with or without health professional moderation

• Caregiver-to-professional communication: secure messaging, email, chat or online 

forums with study staff or health professionals

• Patient-to-caregiver communication: tools that facilitate communication between 

caregivers, family members and care-recipients

• System transactions: transactional tools with the healthcare systems, such as medication 

refills, appointment requests

• Reminders: emails or text messages (SMS) to patient or caregiver on a specific issue, for 

example: medication reminders, notifications, or prompts on recommended care

We excluded non-interactive healthcare technology such as health education materials that are 

passively used and essentially reproduce paper in a digital form. We also excluded technologies 

consisting of access to general information such as directions, phone numbers, benefits review, 

and available services.

Studies that involved only telephony, interactive-voice-response, or synchronous telehealth 

interventions only were excluded in the report. We also excluded fixed home-monitoring 

technologies such as smart-homes, vitals-monitoring, GPS and other location-monitoring, and 

monitoring systems for patient falls.

Outcomes

The outcomes of interest were as follows:

1) Caregiver-centered outcomes: caregiver satisfaction, caregiver burnout, caregiver 

quality of life scores, caregiver depression/anxiety scores.

2) Patient-centered outcomes: patient satisfaction, patient activation, functional status, 

quality of life; quality of patient-caregiver relationship.
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3) Process measures: clinician satisfaction; caregiver perceptions of mobile 

technologies; usage, usability, and barriers to usage of technologies/tools/applications; 

communication with healthcare providers.

4) Utilization outcomes: hospitalizations, ER visits, outpatient/PCP visits.

DATA ABSTRACTION

From the included studies, we abstracted data on the design and objectives of the study, and 

a brief description of the intervention. As there is not currently an agreed-upon convention 

for classifying the functional components of the CHIT interventions, we developed the seven 

categories described above. This taxonomy was adapted from multiple sources including: 

work performed by the Consumer Health Informatics Taxonomy Delphi study at Saint Louis 

University,10 prior work by one of our co-investigators,11 a systematic review performed by the 

Oregon Evidence-based Practice Center under contract to the Agency for Healthcare Research 

and Quality,1

 and a report developed by the VHA Health Informatics Initiative Patient-Facing 

Team.12

We characterized studies by research and implementation phase in categories adapted from 

the definitions put forth by the UK Medical Research Council on the development of complex 

interventions,13 as follows:

• Development phase: studies that investigate intervention design-related outcomes (e.g., 

satisfaction, feasibility, usability) at an early stage of development. 

• Pilot phase: studies that test user-related outcomes after the intervention has reached a 

relatively complete stage of development. Pilot studies are differentiated from evaluation 

studies if they have a small sample size (fewer than 50 participants) or if they do not 

report clinical outcomes.

• Testing and evaluation phase: studies that evaluate important user-related outcomes and 

have a sample size larger than 50 participants.

The categorization of studies by research and implementation phase is presented in Table 3.

STUDY QUALITY

Given the exploratory aims of the key questions, and because the yield of literature was largely 

descriptive, qualitative, and heterogeneous in a number of characteristics, we did not formally 

assess the internal validity of studies. 

DATA SYNTHESIS

We compiled a narrative synthesis of findings, highlighting studies that evaluated caregiver 

outcomes and describing the common characteristics and themes that emerged across studies and 

disease categories.
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RESULTS

LITERATURE FLOW

We reviewed 2,605 titles and abstracts from the electronic search, and identified an additional 16 

studies from reviewing reference lists and consulting technical experts. After applying inclusion/

exclusion criteria at the abstract level, 388 full-text articles were reviewed, as shown in Figure 1. 

Of the full-text articles, we rejected 331 that did not meet our inclusion criteria.

Figure 1. Literature Flow – Mobile Applications for Caregivers

76 Duplicate citations excluded

2681 Citations identified from electronic database searches

2147 from MEDLINE®

266 from IEEE Xplore

268 from AMIA Conference Proceedings

2605 Citations screened for title and 

abstract review

2621 Potentially relevant citations 

identified for further review

388 Potentially relevant articles identified for further review of key question #1

16 Citations identified from reference lists; 

technical experts; and manual searches for 

recent, unpublished or ongoing studies

331 Articles excluded:

2 Non-English language

30 Does not contain original data

175 Not a CHIT intervention 

28 Does not report caregiver 

outcomes

96 Used for contextual purposes only

2233 Citations excluded due to lack 

of relevance in title or abstract

31 Articles of 22 CHIT interventions 

for use by non-professional 

caregivers of adult patients with 

chronic illnesses or disability 26 Articles of 22 CHIT interventions for 

use by non-professional caregivers 

of children with chronic illnesses or 

disability
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We included 31 publications reporting on 22 CHIT interventions that were being 

developed, piloted, or evaluated for their effects on caregiver outcomes, patient outcomes, 

healthcare utilization, or process measures.14-43 Of these, there were five RCTs in seven 

publications;16,19,20,23,26,27,35 the remaining studies consisted of feasibility studies, usability studies, 

pilot tests, qualitative studies, and quasi-experimental studies. We included 26 publications 

reporting on 22 interventions for caregivers of children with chronic illness or disability.44-69

Twelve pediatric studies were RCTs.46-49,55,57,59,63-65,67,70

Studies on caregivers of adults and children with chronic illness or disability are shown in 

Tables 1 and 2, respectively. Table 3 shows the applications and functionality included in each 

intervention, and the phase of the interventions’ lifecycle at the time of the study. Although many 

interventions contained non-interactive educational and resource materials, Table 3 also lists 

all interactive components of the intervention according to the classification taxonomy outlined 

previously. 

KEY QUESTION #1. How does the use of consumer health information 

technologies (CHIT) by non-professional caregivers of adult patients 

with chronic illnesses or disability, or by such patients who rely on a 

non-professional caregiver, affect outcomes for caregivers, patients, 

clinical process measures, and healthcare utilization?

Summary of Findings

The majority of articles described interventions that provided education and one of several 

communication modalities: online peer support groups, online access to providers through email, 

or general disease information and education. Users expressed a desire for more social support 

and studies consistently found that the online peer support groups and chat-rooms were both 

the most-used and most-valued components of any given website, application, or intervention. 

The asynchronous nature of these online communications facilitates participation in support 

groups by mitigating some of the barriers of travel time, geographic separation, and competing 

priorities. Online communications provide access to peers and clinicians that would otherwise 

not be available in many communities, particularly smaller town and rural environs. Anonymity 

was often perceived by users as an important feature of online support groups. 

Several studies described how technical barriers or lack of familiarity with technology could 

limit accessibility of the intervention. Despite the numerous potential technical barriers, few 

studies reported the amount of technical assistance and training provided to users. Older 

caregivers may be less likely to benefit from mobile applications because they are more likely to 

be non-users of handheld technology. Older caregivers may therefore require training in the use 

of the device or application, and may also benefit from applications with special accommodations 

for aging vision and manual dexterity, and their own chronic illness burden. Accommodations for 

language preference may enhance the utility of mobile applications for immigrant caregivers. 

The characteristics and findings on interventions for caregivers of adult patients are shown in 

Table 1. 
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ndings of studies of consumer health information technology interventions to support non-professional caregivers of adults 

y, stratified by care-recipient population

ription of the intervention Results Comments on user experience (usability, access, training, satisfaction)

mpairment

ver Internet Support System (ACISS) is 

e, Internet-based application targeted at 

ical, social, and psychological needs of AD 

ents. ACISS networks caregivers, patients, 

e Alzheimer’s Association, and case 

eriatric care center. 

•	This pilot study collected data only on usage and user satisfaction over 

6 months. 

•	Tx participants (23 CGs) logged on to the site an average of 20x per 

month; Controls (19 CGs) logged on 10x per month. 

•	User satisfaction was high: >75% said they would continue to use ACISS 

on a regular basis and suggest it to other CGs.

•	Study author notes that users were enthusiastic about 

the system. 

•	Participants with the added features of 

videoconferencing and multimedia behavior management tools logged on to the site twice as frequently as the standard features (reference information, secured messaging, chat, and message boards).

ractive Internet- and telephone-based 

port network that includes an Internet 

oard, chat room, and a series of 6 real

sses on positive caregiving. Caregivers 

ter equipment that met the technical 

e interactive classes were eligible to 

s were scheduled in small groups, typically 

group plus the class facilitator, once every 

verage of 16 weeks. 

21 of 40 enrolled caregivers completed the program. Comparison of pretest and posttest results:•	Caregiving Self-Efficacy Scale: statistically significant (p=0.02) increases 

in all 3 subscales.

•	Stress-related Growth Scale: no significant change.•	Caregiver Appraisal Inventory: significant reduction in subjective emotion 

burden subscale (p=0.01), no significant change in positive aspects or time burden subscales. 

•	Of 40 caregivers who matriculated in the Positive 

Caregiving class series, only 21 completed the program.

•	Primary reasons for dropout were work-related 

responsibilities, high involvement with caregiving obligations, and attending community-based support groups. 

me virtual support system includes a 

nders, monitoring of events and behaviors, 

pport; and an integrated web page that 

ally with information from the pocket 

•	Technology in development. •	Interviews with CG volunteers on desired features included quick timers 

and reminders for daily tasks, caregiving checklists, games for stress relief, virtual support group to communicate with other CGs. 

•	Spousal caregivers who pilot-tested the device expressed satisfaction 

with the system and its potential usefulness.

•	Technology is intended for older adult caregivers: 

Internet-based but uses a unique handheld device “PocketBuddy” with features designed to account for aging vision, cognition, motor skills, and hearing. 

•	Pilot study included one 2-hour training session.

 Dealing with Dementia is a web-based 

ntion that provides tailored text material 

del positive caregiving strategies. 

of materials and videos is achieved via 

t results in a list of links based on the 

mentia and the caregiver’s specific 

 evaluation involved 299 employed family 

ating in a pretest/posttest RCT with a 3-day 

tlist control condition.

•	150 Tx and 149 waitlist controls completed at pretest and 30-day followup. Surveys were used. •	Tx CGs reported significant improvements in self-efficacy, intention to 

get support, and caregiver gain, stress, strain, depression, and anxiety, compared with controls.

•	Time spent in the program and composite gain score were significantly 

correlated (r=30, p<0.001). Average exposure to the program was 32 minutes. 

Study author notes: with an average exposure of only 32 minutes to the program over the course of 1 month, 7 of 8 outcome measures yielded significantly positive results at 30-day follow-up.
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ription of the intervention Results Comments on user experience (usability, access, training, satisfaction)

port services (ICSS) for Chinese 

e with Alzheimer disease (AD), has 

) a CG information handbook, and 2) 

 communication between client and a 

st (occupational therapy and/or social 

hronous email exchange occurred in a 

 (English, Simplified Chinese, or Traditional 

•	CGs were grouped by frequency of program use: non-users, occasional 

users (1-2 emails), and frequent users (3+ emails). 

•	Primary outcome measure was BSFC (28-item Burden Scale for Family 

Caregivers). 

•	Non-users (n=9) had increased BSFC scores at post-intervention (BSFC 

Change Score 5.22, 95%CI 10.24 to 0.20). 

•	Occasional users (n=8) had minimal change in BSFC (0.50, 95%CI 

10.86 to -9.86); frequent users (n=10) had a decrease in BSFC (-2.20, 95%CI -2.2 to 6.78). 

•	Comparing non-users and frequent users, the difference in BSFC was 

significant (p=0.02). 

•	Chinese and English language options available. •	CG language preferences between Chinese and 

English varied on the basis of communication mode: 60.7% preferring to write emails in English; while 60.7% were comfortable reading emails in either Chinese or English.

•	Almost all preferred being interviewed in Chinese. 

computer network providing information, 

d decision-support for caregivers 

heimer’s Disease. Communication 

cilitated bulletin board, and private email 

h the nurse for clinical expertise.

ed feature of ComputerLink was the 

mponent, which included a public bulletin 

 and a nurse-facilitated Q&A segment. 

was a 4-module electronic encyclopedia 

ease symptom management, services for 

vers, and self-care for caregivers. 

which 51 caregivers were randomly 

ccess to ComputerLink, and 51 to a control 

ave access to ComputerLink.

-minute training session and coaching on 

erLink

•	Tx (n=47) vs C (n=49)•	Tx group had improved confidence in decision-making (p<0.01) 

between initial assessment and at 12 months.

•	ComputerLink did not significantly improve decision-making skills, or 

lead to decreased perceived social isolation among caregivers. 

•	C-Link reduced strain in CGs who were initially more stressed and 

more frequently used the communication feature. Spouse CGs had reduced relationship strain vs controls. 

•	Care-recipients in both group experienced similar declines in health 

status, although focus groups at the end of the study reflected perceived benefit of being able to communicate with peers and professionals at times of day that were convenient.

NR

 Therapy - Internet-based access to 

nication between memory-impaired people, 

rs, and volunteers. The multi-sensory 

arge screen TV and a device for Internet 

mera, microphone, and sensory media; an 

brator in the sofa to provide olfactory and 

•	Sample size not reported. In group interviews evaluating the need for 

and acceptance of the networked interaction therapy’s capabilities, caregivers reacted positively to all of the intervention’s capabilities except for networked interaction between memory-impaired people. 

NR 

cly accessible Internet-based tool 

dualized, detailed, comprehensive 

 care plans, providing surveillance 

or tumor recurrence, and guidelines for 

See usability comments. >95% of non-provider users reported satisfaction levels 

of good to excellent. Average time to use tool by nonproviders: 7.2 minutes. Of 3,343 users, only 12% of users were family or friends and not necessarily caregivers. Others were patients themselves or clinician providers.
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ription of the intervention Results Comments on user experience (usability, access, training, satisfaction)

alth Enhancement Support System 

multicomponent interactive communication 

ormation services; peer and expert care 

vices; and coaching/training services. 

ved usual care, a laptop computer with 

d a list of high-quality, patient-directed lung 

e care. Tx group received access to the 

th a laptop computer and Internet access.

•	Complicated statistics demonstrated that 2 years of CHESS access is 

associated with improvements in coping strategies compared to controls, and this is mediated through improved bonding. Measured bonding with 5 point Likert scale for feeling universality, obtaining emotional support, obtaining information, sharing feelings/fears, and building bonds. Positively correlated with appraisal-focused coping strategies and problem-focused coping strategies measured by “Brief Cope” which uses 5 point Likert scale to questions on “seeing it in a different light,” “looking for something good,” “concentrating on doing something about situation,” “taking action to make it better,” “getting help and advice”.

Both Tx and control groups given laptop and Internet access and list of quality websites. Training NR. Researchers speculated that formal online discussion groups may have benefits not seen with informal web chat rooms due to closed membership, greater sense of belonging, common patient conditions (lung cancer), and linked educational and group communication components.

website - Internet-based cancer discussion 

for pancreatic cancer patients and family 

•	19% of postings addressed issues of spirituality, 6% of postings 

reported on death of a loved one which researchers suggest may be evidence of a utility in bereavement. One poster cited the chat room as a source of hope in contrast to her medical team. “Perhaps the anonymity of this venue is freeing.”

Use: 600 total postings in 1 month. 68% of the postings explicitly stated relationship of poster to the patient. Of those, 83% (~325 postings) were posted by a family member, who was not necessarily a caregiver. 

 Education System (PIES) is a CD-ROM

 could be Internet based. It uses the 

in a virtual health center (i.e., reception 

cian offices, group meeting room) to 

n. It allows for consultation with a surgeon 

ovides an extensive library of interactive 

ents’ experiences undergoing the same 

stem to assist patients with tailored 

ynamic system tailors information and 

was learned when user exits.

See user experience comments. Caregiver subgroup analysis not performed.

•	CD-ROM-based but can be Internet-ready according 

to authors.

•	Developed by a private vendor: Macromedia’s 

Authorware.

•	5 point Likert scale (5 high, 1 low). Very interested in 

site (4.7 +/- 0.6) and very useful (4.7 +/- 0.5). 

•	83% would prefer software over printed material.•	Participants liked the virtual health center with rooms 

and offices concept, of accessing information in any order, and the mimicry of a human interaction. 

esigned to provide easy and quick access 

ation and support in home settings 

oke survivors. The intervention has 4 

ked websites about stroke and caring; 

cational information or tips specific to 

3) an email forum to ask a nurse specialist 

private questions; 4) a non-structured 

mail discussion among all participants.

•	No difference in caregiver wellbeing after 1 year; measured by 

perceived depression (CES-D 20 item Likert scale, >15 is depression) at baseline: 12 v 11.3, and at 1 year: 12.3 v 9.0; also measured by life satisfaction (SWLS 5 item, measuring agreement with 5 statements) at baseline: 22.3 v 24.1 and at 1 year: 21.7 v 24.6.

•	Compared to participants in the control group, care-receivers in the 

intervention group had decreased healthcare use (self-reported provider visits, ER visits, readmission, SNF placements) decreased over time, with most of use in first 3 months, at which time users had less use. No difference in provider visits at one year 81 v 78, but at 3 months 156 v 188. Significant difference in ER visits 27 v 40 at one year (p=0.001) and readmissions 14 v 41 at 1 year (p=0.0005). 

•	Caregiver emotional support was positively correlated with physical 

help, and with caregiver health (p<0.05). Results stable throughout study, not time-limited, thus caregiving is a continuous experience requiring continuous support.

•	WebTV (Microsoft) or Internet-based. •	Training provided and business hour telephone 

support. 

•	28 subjects did not have computers (and used webTV 

version), 23 had computers but needed Internet access. 

•	Average use: 1-2hr/week. Total hits: 7,121; 102 

messages to RN; 2,148 messages among subjects.
18

et-based Approaches for Supporting Non-professional Caregivers Evidence-based Synthesis Program

ription of the intervention Results Comments on user experience (usability, access, training, satisfaction)

n which 20 participants tested a website for 

s with depression for 10 weeks. 

ises a diary (private and encrypted), and a 

with members-only access. 

See user experience comments for results. Usability optimized with an iterative design methodology.

4/20 dropped out. Usability formally assessed. System Usability Scale (SUS, 0-5 Likert scale, score 0-100, >70 is good): mean 78 (range 43-98).

ort and education intervention for key 

s with schizophrenia or schizoaffective 

on educational and support services 

o included a real-time professionally 

ram in which closed cohorts of 5 to 6 

at specific times with a mental health 

 12-month period. 

easibility trial compared 26 families of 

ophrenia or schizoaffective disorder, 

ne intervention with 16 controls receiving 

•	Brief Symptom Inventory (53 items, 0-4 Likert scale, no distressextreme distress) did not change over time, and no difference between 

groups at 6 or 12 months.Family Attitude Scale (to assess patient-caregiver relationship stress, 30 items, 1-5 Likert scale): only measured in treatment group but did improve over time.Multidimensional Scale of Perceived Social Support (MSPSS, 12 items): only measured in treatment group and did not change.

•	Care-recipient hospitalizations: trend towards decreased admits in 

treatment group: 24% v 50%, X2 2.93, p<0.09.

Participants had to already have computer access at home.Participation: 79% completed year, attendance at weekly session: 59%. Attendance at optional sessions: 30%. 85% used the discussion boards.Usability formally assessed. 92% satisfied-extremely satisfied.Ease of use: 14% somewhat difficult-difficult.Unique challenges of online intervention: insuring access, addressing privacy concerns, managing emergencies adequately. Users had most difficulty with streaming videos and chats.

giver Access to Resources and Education 

modules: 1) an asynchronous online 

nonymously asking questions of experts; 

 a reference library of educational 

ndar of community events; 6) a library of 

es; and 7) technical support. 19 dyads 

ess to the web intervention for 6 months, 

 and Internet service if needed. Caregivers 

who were the significant others of adult 

te to severe TBI.

•	75% very or extremely satisfied. •	94% very or extremely helpful. •	84% very or extremely supported. •	Understanding evenly dispersed between moderately, very and extremely. •	38% not at all or a little motivated.•	14% moderately stressed still, 14% moderately lonely, 21% moderately 

angry, and 13% not at all to a little satisfying.

•	Used online support group most (69% of “hits” of > 1 minute duration). 

Average website visit of 15 minutes.

Avg hits/user: 838 +/- 1015

The online support group was most used (69% of “hits” of > 1 minute duration) and valued module. Investigators noted challenges to use, including “lurking” without contributing, “flaming,” and concerns as to whether electronic support groups provide equivalent emotional support.

 Guide web-based psycho-education 

 online therapy groups, ask-an-expert, 

 asked questions, community activities 

ucational materials.

16 persons with schizophrenia and 11 

other informal support persons assigned 

patients and 10 caregivers assigned to 

•	Outcomes were measured at 3 and 6 months.•	Reported lower perceived stress (p=0.04) among persons with 

schizophrenia in the intervention group compared to controls.

•	Reported trend toward higher perceived level of social support 

(p=0.06) among persons with schizophrenia in the intervention group compared to controls. 

•	Caregiver/family member perceived stress and social support were 

not-significantly different between groups.

•	Total pages accessed: 17,292/3 months by persons with 

schizophrenia, 2,527/3 months by family members and informal support persons.

•	1080 pages/schizophrenic user, 230 pages/caregiver, family member, 

or informal support person. 

•	Most frequently used component: therapy groups. This was most 

highly valued part as well (44% said it was extremely valuable).

•	Web-based. Adapted to “persons who had serious 

mental illnesses.”

•	Usability formally assessed. Measured using 5 point 

ordinal scale (not at all – extremely) of helpfulness, understandability, value, ease of use. Among patients: 6% found it not at all easy, 70-80% found it moderately to extremely easy to use. 13% rarely or sometimes made sense, 88%, often or always made sense. Among caregivers: 0% not at all easy, 9% a little easy. 36% never or rarely made sense.

•	Study author speculates that low engagement rates 

in psycho-education programs (14%) may be due to convenience and stigma.
19

et-based Approaches for Supporting Non-professional Caregivers Evidence-based Synthesis Program

ription of the intervention Results Comments on user experience (usability, access, training, satisfaction)

f a digital device to facilitate caregiver 

nd communication with other helpers and 

speed up appointment decisions; simplify 

prove access to resources; involve care

t to changing support needs. Includes an 

 whiteboard, and dynamic user profiles.

See user experience comments. Based on user needs, the device was designed to 

include speech recognition, large screen display, handwriting recognition, and touch screen.

nication between the patient, hospital, 

ants were sent between 2 and 5 SMS 

a-, and post-operation. 322 family 

y patients received 685 text messages.

See user experience comments. •	Web-based, SMS to phone.

•	92% strongly agreed that they were satisfied.

psychosocial intervention program 

health, quality of life, and medical 

t transplant recipients and their families. 

cluded post-transplant stress and medical 

ent workshops, monitored discussion 

nsplant team with non-emergency 

ary, healthy living tips, and resource/

4 heart recipients and their family 

ven access for 4 months, compared with 

l group of 40 heart recipients and their 

 not have access to the intervention 

Comparing pre- and post-test scores at 4 months:•	Patient Mental Health over prior 2 weeks: as measured by the 

Symptom Checklist-90 (SCL-90), depression and anxiety scores decreased compared to controls (p=0.03, p=0.01). 

•	Patient Anger-hostility score did not change over time and was not 

different between groups. 

•	Caregiver Mental Health over prior 2 weeks (SCL-90): Anxiety 

score decreased compared to controls (p=0.05). Depression score decreased as well but was not different between groups. 

•	Caregiver Anger-hostility score improved compared to controls 

(p=0.03).

•	Health-related QOL: as measured by the Short Form-36 (SF-36: 

measured physical functioning, pain, general health, energy/vitality, emotional wellbeing, role limitations due to physical health, role limitations due to emotional health, and social functioning), improved for both patients and caregivers. Was only administered to intervention group.

•	Self-reported medical compliance over prior 6 months (medication 

compliance, appointment attendance, consistency in lab work, physical exercise) 

•	Greater use of website was associated with improved mental health 

and QOL. No change in compliance but a subgroup analysis of Medical regimen management workshop use was associated with increased compliance.

•	Website accessibility: Able to login: 84%. Also 2 carerecipients and 1 caregiver were Internet novices and 

unable to overcome their hesitancy.

•	Frequency of use by caregivers: 41% monthly, 35% 

multiple per month, 23% weekly. 

•	Avg duration: 15-30 minutes by 50%, >30 minutes by 

12%Ease of use: 93% very easy. 

•	50% never contributed to discussion group, 77% 

never asked an expert.

•	Discussion group most frequently used: 55% often, 

20% sometimes. 

•	Followed by Ask an expert 35% often, 45% 

sometimes, and Q&A library: 40% often, 35% sometimes.
20

et-based Approaches for Supporting Non-professional Caregivers Evidence-based Synthesis Program

ription of the intervention Results Comments on user experience (usability, access, training, satisfaction)

renteral nutrition

ing Telematics Interventions to meet 

eds (ACTION) is an interactive multimedia 

n operated by a remote control instead 

se; a television set instead of a computer 

ased support service enables family 

s education, information, and support; 

ut available choices and engage them 

n-making. ACTION has a range of 

programs accessed via PCs with access 

t care, Internet, and email access 

l to help develop practical caring skills, 

vailable benefits and services, and 

ping.

•	Increased competence, satisfaction and sense of security in caregiving 

role per study, but data not provided. “Majority of 34 caregivers considered that their quality of life had increased.”

•	Used a 40 question Likert scale (1 not at all - 5 a great deal) called 

PREP to measure caregivers preparedness, enrichment (rewards and satisfaction), and predictability. Mean score 3.1. Correlation noted between 7 caregivers who felt intervention was useful and had a PREP score >4. The 4 caregivers who felt it was not helpful had a PREP score <2. Data not presented, but state that intervention improved preparedness but not predictability of stressors implying that it did not reduce caregiver stress or burden.

•	Healthcare providers described feeling a shift in their role to 

empowering the caregiver. Time savings noted because care conferences held using videophone, rather than in-person.

•	Large print, operated with remote control, using TV set 

(for increased familiarity). 

•	Surveyed whether it was hard to read, images were 

clear, terminology difficult to understand (15%), screen layout confusing (11%), difficulty learning to use application, problems with navigating, instructions easy to follow, able to find information they desired, but 77% felt it took too many steps.39

•	4 point Likert scale (4 high, 1 low). 88% gave application 

a 3 or 4 for ease of use, 68% 3 or 4 for satisfaction, 88% 3 or 4 for speed of use, 92% 3 or 4 for helpfulness.

•	Demonstration phase: average WAMMI for 

attractiveness 76, controllability 60, efficiency 71, helpfulness 74, learnability 67.5.

•	5 out of 34 families did not use ACTION.•	On scale from 1-10, caregivers reported usefulness of 

6.4.Some users cited a lack of time as a barrier to use, due to pressures of caregiving.

•	TV based (for increased familiarity) with multimedia 

stored on a connected PC. Videophone software and camera provided that worked through television. Unclear if Internet was provided or if all users already had.

ne bulletin board for patients with 

r caregivers

•	Computers assist people with disabilities that affect communication and 

slowed cognitive processes. Anonymity more important to this population, and finding peers.

•	Many messages had two or more purposes although evaluators only coded 

primary topic. Not focused on obtaining information alone: 55% socioemotional support, 12% cathartic, 21% providing empathy, 11% chitchat, 14% problem solving. 1% taboo topics, 1% universality, <1% damaging statements.

Usage: 718 messages in 3 months, from 42 unique users.

aregivers Website was developed to guide 

the process of caring for themselves by 

giving routine, self-monitoring their mental 

, and practicing good sleep hygiene, while 

complexities of home care. Includes a self

ary checklist for recording daily routines 

egivers’ emotions and energy, and tailored 

mood-elevating activities when caregivers 

Does not have online discussion group, 

ories” where users can submit their ideas/

e then edited by a curator and posted. 

ance of caregivers feeling connected to 

alth information.

See user experience comments. Reports that users found it to be a “quality, reliable, and 

valid site”.
21

Mobile Applications and Internet-based Approaches

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Detailed findings 

Our literature search identified 31 articles describing 22 CHIT interventions for caregivers 

supporting patients with a myriad of medical conditions. Interventions for caregivers of patients 

with Alzheimer’s disease or dementia made up the largest group of studies (7 interventions 

published in 10 reports, of which 2 of these were RCTs examining intervention effects on 

caregiver outcomes).14-21,71,72 The needs of caregivers for patients after cerebrovascular accident 

were targeted in six articles (1 intervention published in 1 RCT, 1 secondary-analysis, 1 

observational study, and 3 feasibility studies);26-31 caregivers of cancer patients in four articles 

(an RCT with lung cancer patient-caregiver dyads, and observational studies of pancreatic, 

prostate, and cancer in general);22-25 caregivers of the frail elderly in four articles regarding 

one intervention,39-41,73 with an additional one article addressing adults with “disabilities” that 

was not otherwise specified.42 Two articles each addressed schizophrenia.33,35 Two articles 

addressed traumatic brain injury.34,36 The needs of caregivers for patients who were diagnosed 

with depression, receiving home-based parenteral nutrition, post cardiac transplant, or currently 

undergoing surgery were addressed in one article each.32,37,38,43 Only one intervention was 

specifically evaluated in a VA population.33 Details of the studies are found in Table 1. 

The most commonly included applications and functionalities included education modules 

(12 studies); self-care aids (9 studies); peer-to-peer communication tools (13 studies); tools 

designed to improve caregiver-to-healthcare provider communication (11 studies). Only two 

studies examined email or text message reminder systems, two studies included tools to facilitate 

patient-caregiver communication, and no studies evaluated transactional tools such as online 

medication refills or appointment requests (Table 3). 

In this section, we highlight studies that evaluated the effects on caregiver outcomes or evaluated 

specific populations relevant to the VA. We subsequently describe the common characteristics 

and themes that emerged across studies and disease categories. 

Caregiver outcomes: Dementia population

One small RCT found that ComputerLink, a computer-based support network, reduced strain 

among caregivers.20 ComputerLink provided a four-module electronic encyclopedia on 

Alzheimer’s disease, but the more widely used feature was a communication component that 

included a public bulletin board, private mail, a nurse-facilitated Q&A segment, and private 

email communication with the nurse for clinical expertise. The study investigators installed 

computer equipment in the participants’ homes and provided a 90-minute training session. 

After 12 months, ComputerLink was associated with reduced relationship strain among spousal 

caregivers compared with controls. Reduced strain was also observed among those caregivers 

who were initially more stressed and used ComputerLink communication features more 

frequently. Although the amount of care received did not differ between the treatment and control 

groups at the end of the study, caregivers perceived benefit from being able to communicate with 

peers and professionals at times of day that were convenient.19

AlzOnline, an Internet- and telephone-based education and support network, was associated with 

increases in perceived self-efficacy and reduced caregiver burden in a pre-/post-test study of 21 

caregivers.71 AlzOnline includes an Internet library, message board, expert forum, and a series of six 

live web- and telephone-based interactive classes on positive caregiving using cognitive-behavioral 
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techniques. Caregivers who owned computer equipment that met the technical requirements for the 

interactive classes were eligible to participate. The average time to complete the series of classes was 

16 weeks. Significant improvements were found on all three subscales of the Caregiver Self-Efficacy 

Scale (CSES), and the subjective emotional burden scale of the Caregiver Appraisal Inventory 

(CAI). No significant changes were found on the positive aspects or time burden subscales of the 

CAI, or on the Stress-Related Growth Scale (SRG). The study authors suggest that these differential 

findings may in part reflect the content of the intervention. The Positive Caregiving series of classes 

focused primarily on increasing skills in relaxation and the management of challenging caregiving 

situations, as well as enhancing perceptions of caregiver mastery and self-efficacy, with little 

emphasis on the rewards and emotional benefits of caregiving.71

Caregiver’s Friend, a worksite-based support program, reduced caregiver strain in an RCT of 

299 family caregivers who were also employed outside the home.16 The Caregiver’s Friend 

intervention was an Internet-based multimedia program that provided tailored text material and 

videos that modeled positive caregiving and coping strategies in a variety of scenarios. Individual 

tailoring of the online content was achievable via an interactive questionnaire that led to a menu 

of links based on the patient’s level of dementia and the caregiver’s specific concerns. Caregivers 

in the treatment group (n=150) were given access to Caregiver’s Friend for 30 days. Pre-test 

and 30-day assessments were compared between caregivers in the treatment group and a waitlist 

control group (n=149). Compared with controls, caregivers in the treatment group reported 

significant improvements in self-efficacy; intention to get support; and caregiver gain, stress, 

strain, depression, and anxiety. Average exposure to the program was 32 minutes, and composite 

gain score was significantly correlated with time spent in the program (r=30, p<0.001).16

Caregiver outcomes: Lung cancer population

The Comprehensive Health Enhancement Support System (CHESS) program for patients with 

lung cancer and their caregivers improved caregiver coping strategies as measured in a twoyear RCT of 285 patient-caregiver dyads.23 The control group (N=141) received usual care, a 

laptop computer with Internet access, and a list of patient-oriented lung cancer and palliative 

care websites that the researchers felt to be of high-quality. The intervention group (N=144) was 

provided laptops and Internet connectivity, as well as access to the CHESS website that provides 

formal online discussion groups, communication with expert care, educational materials, FAQs, 

caregiver tips, health status tools, and decision aid tools, among others. Increased bonding among 

caregivers – suspected to be a result of the communication tools and online discussion groups – 

was found among CHESS users compared to controls (p<0.05). The increased bonding appeared 

to mediate improvements in both appraisal-focused coping (“cognitive efforts to define and 

redefine the personal meaning of the stressful situation,” p<0.05) and problem-focused coping 

(“to modify or eliminate stressors by handling the reality of the demands,” p<0.05) strategies as 

measured by a previously validated scoring tool called “Brief Cope.” The mostly female (68%) 

caregiver users had a mean age of 55.6 years, and 50 percent had completed at least a college 

degree. The amount or frequency of use was not reported for the two-year study. Interestingly, 

only 42 percent of dyads completed the final survey. However, because the investigators were 

studying a population with advanced lung cancer, 84 percent of study dropouts were due to 

the death of the patient; thus, the high attrition rate does not appear to be indicative of use or 

usability obstacles. 
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Caregiver outcomes: Post-surgical population

A two-group prospective, pre-/post-test intervention study of post-heart transplant patients and 

their caregivers demonstrated improved caregiver outcomes in those who used an Internet-based 

website for four months.38 The intervention group comprised 24 heart transplant recipients 

and their family caregivers with access to a website of educational resources and psychosocial 

interventions such as: online, self-paced workshops on post-transplant stress management and 

medication management (both of which included self-assessment tools, decision support, and 

tailored advice), clinician-moderated online discussion groups, email contact with transplant 

team members, a Q&A library, healthy living tips, and a resource library. The control group 

consisted of 40 heart transplant recipients and their caregivers who were enrolled in other 

non-Internet-based interventions at the same institution over a four-month period either 

immediately before or immediately after the present study. Mental health (depression, anxiety, 

and anger-hostility) was measured using the Symptom Checklist-90 (SCL-90), which assesses 

mental health over the past two weeks. Caregivers in the intervention group had significant 

improvements in both their anxiety and anger-hostility scores from pre-intervention to postintervention compared to controls (p=0.05 and p=0.03, respectively). Caregiver depression 

scores also improved over time but were not significantly different between intervention and 

control groups. Health-related quality of life, as measured by the Short Form-36 (SF-36), 

improved for both patients and caregivers in the intervention group over time, but was not 

evaluated in controls. Finally, a subgroup analysis found that those patient/caregiver dyads in the 

intervention group who used a particular component of the website, an online workshop about 

medication management, had increased compliance as measured by frequency of completing 

recommended appointments and lab work. Similarly to other studies, the majority of caregivers 

were female (85%), married (85%), and Caucasian (90%); 50 percent had at least a high school 

education.

Caregiver outcomes: Veterans

Only one intervention was specifically evaluated in a VA population.33 This was a prospective 

trial of a web-based intervention for relatives of Veterans with schizophrenia or schizoaffective 

disorder. It provided educational and support services to relatives, and included an online 

professionally-facilitated multi-family support group. The 26 family members in the intervention 

were compared to an historical control group of 16 family members who had received other 

support services in the four years prior to this study. They found that there was no difference 

between intervention and control groups in family members’ measurement of distress using the 

Brief Symptom Inventory scoring tool. A measurement of stress between the family member 

and patient did improve over time in the intervention group, but was not measured in the control 

group. A trend towards decreased hospitalizations among care-recipients was noted in the 

intervention group compared to controls but was not significant (24% v 50%, X2 2.93, p<0.09). 

Family members were predominantly female, with a mean age of 57 years old and an average of 

14 years of education. Of note, they were not specifically caregivers for the VA patient. Seventynine percent of family members completed the year-long program, 85 percent also used the 

online discussion boards, and there was an average attendance of 59 percent at the weekly online 

family support group sessions.
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Effects on healthcare utilization: Stroke population

The Caring~Web studies were notable for evaluating healthcare utilization by care-recipients. In 

a three-month descriptive study of five caregivers of patients who had recently been discharged to 

home from a rehabilitation treatment center after a stroke, investigators measured the number of 

phone-calls to a clinician’s office (range 1-4), appointments (range 2-3), emergency department 

visits (1), and hospital admissions (1).31 In a subsequent evaluation, a one-year RCT demonstrated 

that self-reported, utilization of healthcare services was less compared to controls.26 The intervention 

group consisted of caregivers of patients with a recent stroke (n=36) who were provided access to the 

Caring~Web application, a website with links to educational information on strokes and caregiving, 

tips for caregivers, an email link to solicit expert care from the institution’s nurse specialist and 

a multi-disciplinary stroke rehabilitation team (consisting of a physician, pharmacist, dietician, 

social worker, and therapists), and an email discussion group facilitated by the nurse specialist. The 

control group comprised caregivers (n=37) that would not be using the web. All recruited caregivers 

were Internet novices. After one year, the intervention group’s care-recipients had 33 percent 

less emergency department visits (p=0.001), and 66 percent less hospital admissions (p=0.0005) 

compared to the patients of caregivers in the control group. Fewer clinician provider outpatient 

visits were noted at three months (156 vs 188 visits), but this had become non-significant at one 

year of follow-up. These findings suggest that care-recipients in the intervention group received 

more appropriate or timely care, thus preventing emergency department visits and subsequent 

hospital admissions, perhaps due to their caregivers having improved access to information or 

closer communication with clinician providers as a result of the Caring~Web intervention. Again, 

caregivers were primarily female (75%), the spouses of the care-receiver (70%), with a mean age of 

55 years, and ~90 percent had achieved a high school education or greater.

Common CHIT intervention characteristics among studies

Regarding the types of caregiver needs that were addressed, the majority of articles described 

interventions that provided one of several communication modalities: either online peer support 

groups, online access to providers through email or SMS/texting, or general disease information 

and education. The majority of interventions provided all three of these communication 

modalities in a single site/application, making it difficult to identify exactly which component of 

the intervention accounted for the outcomes.14,19,20,23,25,27,32-36,38,74

Online peer support groups and chat rooms, whether professionally moderated or not, were 

consistently found to be both the most-used and most-valued components of any given website, 

application, or intervention.23,24,34,73,74 Even preliminary feasibility studies found that users expressed 

a desire for more social support and inter-personal communication, that presumably would be 

addressed with such an intervention.31 Analysis of conversational themes from one online chat 

room found that users frequently acknowledged a perceived benefit both from participating in a 

community of peers, and knowing that other caregivers faced similar challenges.30 Multiple studies 

speculated that, compared to in-person support groups, online peer support groups improved 

access and anonymity. Clearly, online, asynchronous communication allows users to participate 

in a support group while mitigating some of the barriers of travel time, geographic separation, 

and time constraints from competing priorities. Evaluations of Caring~Web also pointed out that 

online communications provide access to a diversity of peers and clinicians that would otherwise 
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Mobile Applications and Internet-based Approaches

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not be available in many communities, particularly smaller town and rural environs.28,30 Anonymity 

was often considered an important feature to users of online support groups, and several authors 

speculated that caregivers and patients with chronic medical illnesses may have feelings of stigma 

or actual communication disabilities (hearing difficulties, slowed cognitive processes, etc.) that are 

overcome in faceless, asynchronous communication.24,28,34,35,42

CHIT interventions commonly allowed users to pose questions to a clinician, variously called 

“Ask an Expert/Nurse,” “Expert Care,” “Q&A,” or “Frequently Asked Questions.” Such 

communication with clinicians allowed users the opportunity to ask questions and, in many 

cases, the intervention included an online “library” of previously asked questions with the related 

responses. All of the interventions in adult caregivers and patients provided this functionality 

via email from the website; none used alternative technology such as SMS/text messagings. In 

the majority of interventions, the email was sent to a nurse specialist; although email access to 

other clinician experts was also described, including an Alzheimer’s disease counselor and case 

manager,14 occupational therapist and social worker.17,18 Two interventions described in detail 

how a multidisciplinary team provided the expert care: the email went to a nurse coordinator who 

then consulted with the cardiac transplant team in one case,38 or a team consisting of a physician, 

pharmacist, dietician, social worker, and therapists.26,31 In the pediatrics literature, use of SMS/

text messaging in the evaluated intervention was quite common perhaps due to researchers’ 

perception that parents of young children were likely to be familiar with current mobile phone 

and computing technologies.

User-centered design

According to the Usability Professionals Association, User-centered Design is the approach to 

design that grounds the process in information about the people who will use the product.75 The 

process focuses on the usability of the product or service, making sure that users can readily and 

effectively accomplish their tasks as intended. Usability is considered part of a wider concept 

of user experience, or the way an individual (user) feels about using a product or service. User 

experience highlights the experiential and affective value or other meaningful aspects of human 

interaction; and also includes perceptions of utility, ease of use and efficiency of the system. User 

experience can be dynamic and change over time as the circumstances change.

Usability

A limited number of studies assessed usability using formal tools and iterative design 

methods.32,39 Chambers et al. used the Website Analysis and Measurement Inventory (WAMMI) 

to assess the initial implementation of the Assisting Carers using Telematics Interventions to 

meet Older Persons’ Needs (ACTION) intervention.39 They found that usability problems related 

to difficulty understanding terminology used on the website (15%), confusing screen layout 

(11%), challenges learning to use the application, and problems with navigation. More telling, 

77 percent felt it took too many steps to reach information they desired. In an exploratory study 

of a Swedish website application to support the informal caregivers of patients with depression, 

Stjernsward et al. found that the 20 pilot users gave the application a mean System Usability 

Score of 78 (range 43-98), suggesting good usability overall (>70). However, notably 20 percent 

of users dropped-out of this exploratory study, which may indicate that some users were unable 

to continue using the application due to usability issues.
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Mobile Applications and Internet-based Approaches

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One pediatric study evaluated the usability of cystic fibrosis, diabetes, or arthritis portals by 

novice users.54 Their approach illustrates some of the very simple and practical information such 

testing can yield. For instance, parents pointed out use of jargon and abbreviations as barriers to 

understanding information, and they wanted confirmation that communication with healthcare 

professionals was received.

The Caregiver Support Service, developed for Chinese Canadians and associated with decreased 

caregiver burden among frequent users, examined language preferences among 28 caregivers 

of patients with dementia.17,18 Users could access a bilingual portal for caregiver information or 

email an occupational therapist and social worker. Most caregivers resided with the patient; the 

typical caregiver was female, aged 40 to 60, worked full-time, had a college education, was born 

outside of Canada and immigrated to Canada 10 to 20 years prior. Most care-recipients were the 

parents who co-resided with the CG. All spousal CGs invited to participate declined use of the 

email support service, and the study authors speculated that this may be a cohort effect associated 

with age. 

A handheld device called PocketBuddy was developed for use by aging adult caregivers, with 

accommodations for poor vision, cognitive function, motor skills and hearing.15 Features of 

the device include landscape mode for greater screen space, optional large font to improve 

readability, button lists, finger tapping, enlarged keyboard, audible cues, and multimodal support 

options. Various functions include assisting in caregiving activities, monitoring the well-being 

of both caregiver and care-recipient, and networking the caregiver with family and friends to 

actively involve others in the daily life of the caregiver and care-recipient. The device was 

pilot-tested by eight older adults (aged 65-89 years), including two spousal Alzheimer’s disease 

caregivers. The caregivers expressed satisfaction with the system and its potential usefulness, 

though further details were not reported.72

ACTION caregiver users had a mean age of 70 years (range 47-88 years) and the technology 

was specifically designed to meet the needs of older adults, including large print to accommodate 

vision deficits.39,41 The Prostate Interactive Education System (PIES) intervention to assist 

diagnosis and treatment decision-making found that 89 percent of users had no vision difficulties 

impacting ability to use technology, and 83 percent had no difficulty with using a mouse.25

In general, these studies highlight some notable barriers and accommodations necessary when 

considering use of technology interventions for older caregivers, whether deployed on mobile 

computer platforms or not. A demographic survey of cell phone Internet usage conducted by 

the Pew Research Center determined that seniors (aged 65+) had the lowest usage rate among 

any major demographic group. Although 70 percent of persons aged 65+ currently own a cell 

phone, only 16 percent of them use their phones to go online.

76 Older caregivers may require 

training in the use of the device or application, and may also benefit from applications with 

special accommodations for aging vision and manual dexterity. However, one study did note 

that streaming video applications that might accommodate older caregivers with vision or 

attention deficits was the component with which users were most likely to experience technical 

difficulties.33 Accommodations for language preference may enhance the utility of mobile 

applications for immigrant caregivers.
27

Mobile Applications and Internet-based Approaches

for Supporting Non-professional Caregivers Evidence-based Synthesis Program

User experience

A number of studies described the usage of the CHIT interventions through the lens of the 

caregiver or patient users. Many of these evaluations or qualitative descriptions were not primary 

goals of the study, yet offer important information related to their drivers or barriers to use. A few 

examples are illustrated here, across the adult and the pediatric literature. 

The modality of tool or type of functionality offered was perceived to be important in a few 

studies. Among teens with traumatic brain injury and family members, the availability of audio 

recording enhanced the users’ ability to relax and comprehend the written content.67 Parents 

given the choice of a DVD or an Internet-based intervention after a child’s injury felt that the 

web tool offered greater accessibility.69

Many studies offered peer-to-peer communication, which as described previously, achieved high 

satisfaction and use. Individual comments about peer communication tools provide glimpses 

into reasons for this user experience. Children with diabetes58 and juvenile arthritis,45 and 

their parents using a portal to communicate with peers received social support by “not feeling 

alone” and perceiving greater universality in their journey. Parents of children with cancer were 

positive about the convenience of communicating at any time, the ability to “vent” their feelings 

through words, and feeling less isolated knowing others were experiencing the same condition 

and issues.50,51 Caregivers of patients with Alzheimer dementia reported that use of peer-peer 

communication was reassuring and led to greater self-efficacy as a caregiver.

18,20 While views 

of peer online peer support were overwhelmingly positive, some users described negative 

experiences. Parents of children with cancer felt stressed when another child died;51 others were 

less satisfied if discussions “went off topic,”51 or there were insufficient numbers of participants 

to achieve “critical mass”.32,50 Of note, although some groups were moderated by staff and others 

were not moderated, there were no comments about the effect of health professional moderation. 

Some studies reviewed for this report also described the process and/or results of soliciting user 

participation in the development and design process. Parents and teens with juvenile arthritis 

provided valuable input during development, leading to improvements in website navigation 

and display of information, such as reducing ambiguity of medication information presented.45

Parents of children with diabetes also pointed out problems with medical jargon and lack of 

information about normal values of laboratory data.54 Caregivers of patients with depression 

found it important for developers to ensure there was clear descriptions of functions so as users 

would understand their value. These caregivers also pointed out that using real names on peer 

communication violated privacy; when reminded by the study team that real names were optional 

and described in the user instructions, users remarked that instructions usually were not read.32

Technical challenges

Technical barriers or lack of familiarity with technology were described in several studies as 

potentially limiting accessibility of the intervention. Dew found that 16 percent of would-be 

users were unable to login and thus never able to access the intervention.38 Five of 34 families 

never used the ACTION intervention site due to technical difficulties.40 Multiple studies 

documented that intended users of the implementation frequently did not have a computer, 

let alone Internet access; those who did were only minimally experienced in their use, and 

sometimes the caregivers’ or care-recipients’ hesitancy to use an unfamiliar technology could 
28

Mobile Applications and Internet-based Approaches

for Supporting Non-professional Caregivers Evidence-based Synthesis Program

not be overcome;25,26,32,34,38 however, these articles are through 2009 and thus might not represent 

current users’ computer and Internet experiences. Both the Caring~Web26,27 and ACTION 

39,40 interventions were designed for use with a standard television and remote control (using 

Microsoft’s WebTV product) in order to increase user familiarity and overcome barriers, such as 

computer and Internet literacy. Of note, no studies found that security or privacy concerns were a 

barrier to use of technology. 

One conference abstract described a qualitative study analyzing reasons why an electronic care 

management tool for type 1 diabetics failed to meet functionality expectations. Investigators 

conducted key informant interviews and surveys of patients and their parents which revealed 

several points of failure, including lack of patient or parent time/interest, glucometer 

malfunction, and lack of Internet service (especially for participants in rural settings).57

Few studies reported the amount of technical assistance and training provided to users. As part 

of the Caring~Web intervention, a technician installed the television software required or, in 

some cases, a computer and Internet connectivity, instructed caregivers and patients on its use, 

provided a paper-based support manual, and was available for technical assistance via phone 

throughout the study. 26,27 Families enrolled in the Online Family Problem-Solving (OFPS) 

intervention for children with TBI were given a computer, printer, and webcam, and extensive 

in-person training on use of the equipment.66 In contrast, Chambers noted that during ACTION’s 

Ireland implementation, staff had insufficient time to explain the system to users.39 Not one study 

quantified the costs or amount of time that user training and ongoing support required; although, 

anecdotal experience suggests that these often surpass the initial capital investment of technology 

implementations. 

KEY QUESTION #2. What lessons can be learned from studies 

evaluating consumer health information technologies (CHIT) that 

specifically target the parents/caregivers of children?

We found 26 studies of 22 CHIT interventions in a variety of pediatric populations describing 

caregiver involvement with the intervention and/or caregiver outcomes (Table 2). In all cases, 

parents were the caregivers being described. Cancer (4 interventions), traumatic brain injury 

(3 interventions), and diabetes (2 interventions) were the most common target conditions. The 

following sections describe examples of different intervention subtypes tested in pediatric 

populations.

Self-management education and enhancing caregiver-patient communication

A number of studies described interactive educational web-based interventions designed to help 

patients and their parents develop self-management skills for chronic illnesses such as TBI and 

asthma. The largest group of studies described a multi-component intervention for children with 

traumatic brain injury and their parents. The online family problem-solving (OFPS) intervention 

includes logistic and educational material presented in 12 distinct interactive web sessions. 

The family collectively completed each module, entering responses to questions posed by the 

program and receiving tailored feedback from the website. Completed exercises were stored 

online and reviewed by a therapist, who also conducted a synchronous online videoconferencing 
29

Mobile Applications and Internet-based Approaches

for Supporting Non-professional Caregivers Evidence-based Synthesis Program

session with the family after each module was completed. A small, unblinded RCT found the 

OFPS was more effective than static Internet resources alone in reducing parental depression 

and anxiety, though it was impossible to separate the effects of the web intervention from the 

videoconferencing sessions. Of note, nearly half the parents had no more than a high school 

education suggesting the potential feasibility of a complex web-based intervention in populations 

with varied educational backgrounds.64 The same group of investigators more recently developed 

a version of OFPS designed for adolescents and similarly found reduced parental depression and 

improved parent-child communication.67,68 An earlier feasibility study of the OFPS intervention 

found that technical issues such as the type of webcam used and virus infection could affect 

intervention usability.66

One RCT of 228 children and their parents evaluated the effects of a multi-media Internet 

asthma education program compared to standard print/verbal education on child/parent disease 

knowledge, asthma symptoms and emergency room utilization.46,47 The intervention, which 

included 44 vignettes designed to be reviewed in about one minute – suited to a child’s attention 

span – increased child and parent knowledge of asthma, and was associated with significantly 

decreased ER utilization and asthma symptoms compared to control participants.

Peer communication

Caring for a chronically ill child can be anxiety-provoking and also isolating, as parents of 

healthy children may not understand their experience. Several studies examined the role of 

electronic peer communication strategies. Han et al. surveyed 73 parents about their experience 

with online support groups for parents of children with cancer.51 Over three-quarters (77%) of 

parents highly valued the informational aspects of the support groups including information 

about the cancer itself and its treatment. While they also valued sharing experiences, receiving 

general support, venting feelings and gaining accessibility, they identified large volumes of 

often off-topic mail/posts and lack of face-to-face contact as drawbacks. 

Demaso et al. evaluated a web-based tool for sharing personal stories about caring for children 

with cancer.56 They found that on a seven-point scale, parents reported the application increased 

their understanding of their experience as a caregiver of a child with depression (mean rating 

of 5.4). In addition, 83 percent reported that the tool helped them to understand symptoms of 

pediatric depression. Families in this study also reported that they learned ways to cope with 

stressful circumstances.

System transactions, accessibility and efficiency

Some of the online tools reported gave 24-hour access to laboratory results, medication lists,52,62

and secure messaging with providers.53 This kind of access – for example, secure-messaging – 

was also seen as more efficient and less frustrating than playing telephone tag with clinicians.53

Two studies evaluated text messaging interventions. One examined the effects of an automated 

text message reminder system on medication adherence and transplant rejection rates in pediatric 

liver transplant patients.60 Participants entered contact information online for patient and 

caregiver, medication information, and the desired time for alerts. Text messages were initially 

sent to the person responsible for medication administration (parents for younger children, and 

the patients themselves in older age groups); the caregiver was notified if a message confirming 
30

Mobile Applications and Internet-based Approaches

for Supporting Non-professional Caregivers Evidence-based Synthesis Program

medication intake was not received within 30 minutes. A pre-/post-study of 41 children found 

significant improvement in immunosuppressive drug levels, and a reduction in biopsy-proven 

transplant rejection over one year. Though the impact of this simple intervention on health 

outcomes is promising, several issues including a high attrition rate (37%) which may raise 

concerns about the acceptability of this type of reminder system should be noted.

One large RCT examined an intervention to increase influenza vaccination rates in an urban, 

low-income pediatric and adolescent population in which parents received up to five weekly 

text messages.59 The messages included educational information about the influenza vaccine 

– to reduce misconceptions – and information about Saturday flu vaccine clinics. Texts were 

personalized to include the child’s name in the body of the text message. Both the intervention 

group and the control group received usual care, which was an automated telephone reminder. A 

higher proportion of intervention group (42.6%) received immunizations, compared to controls 

(39.9%) (relative rate ratio=1.09; CI=1.04-1.15, p=.001). This study demonstrated the feasibility 

of reaching significant numbers of parents/caregivers using text messaging. Though the absolute 

increase in vaccination rates was only three percent, given the low cost of texting, this is still 

likely to be a cost-effective intervention. Of note, the texts used multiple strategies aimed at 

reducing barriers to child vaccination: one was to inform about the vaccine, intended to reduce 

parent concerns about possible dangers from vaccination; a second was providing practical 

logistic information about the time and place for the vaccine clinics; and a third was a reminder 

function.

User experience

This information is summarized in Table 2 and in the “User experience” section under Key 

Question #1.
31

et-based Approaches for Supporting Non-professional Caregivers Evidence-based Synthesis Program

ndings of studies of consumer health information technology interventions to support non-professional caregivers of

r disability

ription of the Intervention Results Findings on usability of technology

ment decision aid to help parents 

ons about the kind of care and 

ould be best for their child with 

•	 Poor response rate (only 12 completed both the pre- and post-test 

questionnaire, which were separated by 3 months).

•	 In 3-month study period about 7,500 visited the online ADHD decision 

aid.

•	 Small non-significant increase in decisional conflict (from mean=55 

(SD=30) to 57 (27), p=0.94, and self-report knowledge (from 6.5 (1.9) to 6.7 (1.5), P=0.89.

•	 Small non-significant decrease of the stage of decision-making (from 

2.6 (1.1) to 2.2 (0.7), P=0.16.

•	 The DA contributed to better preparation for decisions and facilitated 

decision-making. Satisfaction with the information received through the DA was moderate, and 60% felt that the information was too limited. 

94% of respondents did not complete both questionnaires; the authors took this to indicate that the navigational flow and usability of the online decision aid might have been too complicated.

web-based program composed 

es including disease-specific 

elf-management strategies, peer 

and 2 modules designed to help 

mote healthy behavior in their 

n. 

None; development phase. •	 Few navigation errors.

•	 Numerous presentation errors (mostly in finding medication 

links) - improved with corrections.

•	 Control usage errors were also discovered and corrected.•	 Participants identified four types of design aesthetics as 

important: layout, navigation, visual assets, and visual appeal.

•	 89% of teens and 95% of parents felt content was relevant. 

74% teens and 79% parents felt content was trustworthy. 

•	 Participants suggested addition of videos/photos to 

demonstrate exercises would be helpful. 

•	 Adaptive and interactive features were highly rated (glossary, 

audio clips, PDFs, “Ask an Expert” discussion board).

•	 Nearly all teens felt the discussion forums would be helpful, 

while only half the parents felt similarly. 

multi-media, Internet education 

h 44 vignettes that take less than 

 child to complete. For children 

, the parent used the program; 

7-17, the child used the program 

s observed. Ten of the vignettes 

ser to make a decision about 

havior that is likely to affect 

ived just the traditional 

nformation.

•	 Increased asthma knowledge between visit 1 and visit 3 was greater 

for the intervention groups than for controls for caregivers of children <7, Chi-sq=6.92, P<0.01; for caregivers of children 7-17 Chi-sq=7.21, P<0.01; for children 7-17 Chi-sq=11.71, P<0.01. 

•	 Respective increases for these intervention groups were from 47.9 (5.2) 

to 55.7 (4.3); 50.0 (5.6) to 55.4 (4.2); and 43.1 (6.8) to 53.1 (5.6).

•	 Intervention group showed greater decrease in asthma symptom days. 

Decrease of 81 days for intervention vs. decrease of 51 for control, Chi-sq=6.7, P<0.01. 

•	 Intervention showed greater decrease in number of ER visits, 1.93 vs. 

0.62, Chi-sq=5.1, P<0.01.

•	 Intervention group also had lower average daily doses of inhaled 

corticosteroids, 434 μg vs. 754 μg, Chi-sq=7.3, P<0.01.

•	 Modified for children. Short vignettes of under a minute each 

(for shorter attention span). Users reported it was easy to use and navigate, interesting, and enjoyable.

•	 Caregivers of children <7 and caregivers of children 7-17 

reported easy to use (82% and 89% respectively), interesting (68% and 44%), enjoyable (41% and 33%), easy to navigate (82% and 67%), and will use again (86% and 67%).

•	 Teen children found it less enjoyable.
32

et-based Approaches for Supporting Non-professional Caregivers Evidence-based Synthesis Program

ription of the Intervention Results Findings on usability of technology

at allowed secure messaging. 

t photos of child’s eczema, with 

ription to the specialist. Also, 

l in a form about the problem 

ptoms. The specialist responded 

nt advice. Control group used eans for dermatology care.

•	 Intervention patients had fewer visits to providers of complementary 

medicine than controls, mean difference=0.8 vs. 0.09, F(1,66)=2.96(P=0.09).

•	 No change in self management behavior. No change in health 

outcomes. No change in costs for parents.

•	 Showed the feasibility of doing consults via secure message, 

but did not show improved outcomes. 

•	 79% of users would recommend its use to others.

 trial comparing traditional PSST 

T+PDA reminder device. PDA 

gs: 1) review problem-solving 

review and practice the five 

the problem-solving approach; 3) 

ser to use the problem-solving 

 daily log to record problems 

y the mother.

No differences were found on the outcome measures between the traditional PSST group and the PSST+PDA on problem-solving skills, improved mood, reduction of depressive symptoms, and reduction of PTSD symptoms.

•	 Mothers in PSST+PDA group had lower willingness to 

recommend their program than those in the PSST alone group, 7.8 (1.9) vs. 8.6 (0.92), P<0.01.

•	 Among PDA users, 55% thought they were easy to keep (e.g. 

store and carry). Almost all said they were comfortable with text size, wording, and volume of the audio-recorder feature. 

•	 71% said the information in the program was organized and 

understandable. Entering text and audio was seen as helpful, but use of voice recorder was problematic.

•	 The computer-animated character (“Gina”) was seen as 

helpful, providing directions for using the computer program, applying the problem-solving process, and helping participants “feel better”. 60% liked working with Gina, and 49% said Gina understood their problems

•	 There were substantial difficulties in transferring data from the 

PDAs to the computers, making some analyses impossible.

h multiple features: a) home 

rmation and exercises for 

ve discussion groups for different 

 d) Ask an Expert feature; e) Q&A 

sources: links to other relevant 

d local Pittsburgh resources. 

s assessed using a 9-item 

e Website Evaluation Instrument 

tative interviews were conducted 

dy with 24 caregivers (including 

s that did and did not access the 

•	 Eleven individuals from 9 of the 21 families logged on to the website; 

five of these were caregivers, 4 were cancer patients, and 2 were siblings of the patients. 

•	 Most commonly used sections were Discussion Groups (n=257 hits); 

Common Areas of Concern (n=78 hits); Previously Asked Questions (n=66 hits); and Connect to Coping (n=60 hits). 

•	 Nonuse of the web site was related to dislike/unfamiliarity of computers 

(24%) and being too busy (21%). 

•	 Other reasons given for not using the website (not quantified) were 

spending time in hospitals where no Internet; already having sufficient information from research and medical staff, and preferring face-toface interactions instead of computer discussion groups. 

•	 Among the 5 caregivers who accessed the website, most helpful 

aspects were “Ask the Expert” and “Previously Asked Questions”.

•	 Caregivers believed their children did not use the website because 

they wanted to feel “normal,” had sufficient support from family and friends; were too sick; or only used computer for talking to friends.

•	 Hands-on training (as opposed to phone training) appeared to be 

associated with greater use of the tool.

Not discussed. Relatively low use may have been related to this being a high stress time for the families (i.e. shortly after diagnosis of the child with cancer). The participants may have been too tired and overwhelmed to be able to use this site.
33

et-based Approaches for Supporting Non-professional Caregivers Evidence-based Synthesis Program

ription of the Intervention Results Findings on usability of technology

ion. Evaluation study of 3 on-line 

ps (cancer-N-BASTOMA, n=17 

cipated; PED-ALL, n=28 parents 

 and PED-ONC, n=28 parents) of 

hildren with cancer. Participants 

urvey, with structured and open

ions, about the use of computers 

•	 Most (85%) connected daily to the group, while 11% connected 1 to 3 

times a week. 

•	 Mean time connected to the computer group was 5 hours (SD=6.1), 

with range of 30 min. to 40 hours.

•	 Most commonly cited advantage was information giving and receiving 

(cited by 77%), followed by sharing experiences (e.g. gives a sense they are not alone) (67%), general support (29%), venting feelings (14%), accessibility (8%), and use of text (3%).

•	 Disadvantages included noise (i.e. off topic messages) (49%), negative 

emotions (e.g. when you hear bad news from others)(26%), large volume of mail (21%), and lack of physical face-to-face contact (11%).

•	 Technically feasible. •	 The online support group appeared to provide emotional and 

interpersonal support to caregivers, though some users were overwhelmed by the sheer volume of posts/messages, and number of irrelevant/off topic posts.

ection is a web-portal to improve 

vider and family to family 

on. Includes email, access to 

ata, current medication lists. 

rs to be a kind of personal health 

ned for the caregiver.)

•	 Caregivers used the system an average of 1-2 times a day. •	 Greater use appears to occur in the period shortly after diagnosis.•	 Qualitative data indicate caregivers like access to laboratory data; also 

of interest is medication lists. 

•	 Caregivers appeared to appreciate greater access to 

information that typically was only available in paper medical record; easy access to labs results and medication lists was appreciated.

ws parents to communicate (i.e. 

ssaging system) with health 

ide range of professionals). Also 

essionals to communicate with 

•	 43% of parents compared to 14% of professionals used the system. •	 Parents submitted a mean of 5 questions (range 1-17) and 3 

responses (range 1-9). Professionals submitted a mean of 2 questions (range 1-8) and 4 responses (range 1-23). Purpose of the submitted questions was for consultation or advice, information sharing, monitoring, and administrative purposes.

•	 The rehabilitation physician was most often the person identified 

as responsible for feedback (41% of the 111 submitted questions), followed by physiotherapist (20%) occupational therapist (14%), teacher/supervisor (10%). 

•	 Of the 21 parents who used the system, 40% used it regularly, 50% 

occasionally, and 10% rarely. 

•	 Nearly all parents (95%) found it valuable (all but one). They liked the 

accessibility (access 24-7); efficiency (avoid frustrating phone calls); and the transparency. 

•	 Professionals use the system substantially less than parents, and used 

it less often. Only 29% of professional found it valuable.

•	 Parents and professionals thought usability/ease of use could 

be better, e.g. by simplifying the log-in procedure. 

•	 Some parents proposed linking the system to an online 

support group.

•	 May work best with parents who have complex network of 

providers and organizations that they need to interact with.
34

et-based Approaches for Supporting Non-professional Caregivers Evidence-based Synthesis Program

ription of the Intervention Results Findings on usability of technology

ediatric portal with test data. 

were given scenario-based ing tasks. Measures included 

plete tasks; videotaping while 

aloud” technique, followed 

nalysis; Computer Usability 

Questionnaire (CUSQ).

•	 Caregivers liked assistance dealing with insurance companies, and 

preparing for the doctor’s visit. 

•	 Problems identified were use of medical jargon such as the 

abbreviation “Fe” or what a pathology report was. 

•	 Other challenges were figuring how to interpret graphs, and 

understanding laboratory results that had abbreviations and values. 

•	 They asked for fewer clicks to find things; some wanted more 

medication information such as side effects and allergy issues. 

•	 For email, they wanted some kind of confirmation that it was received 

by a provider.

•	 Researchers found several areas where usability could be 

improved including finding date of last pulmonary function test was completed by only one person. 

•	 Finding and interpreting lab results was also a challenge; but 

improvements to the system made it easier to find in Round 3. 

•	 Sending email was also challenging but improved as the 

system improved. 

•	 Satisfaction was about the same regardless of the round of 

testing.

enerated text message to cell 

rent/caregiver 48 hours before 

ppointment. Controls received 

ders on cell phone.

No-show rates were lower in the control group (voice reminder on cell phone)(8.2%) compared to the intervention group (text message reminder) (17.7%), p=0.011.

•	 Not formally tested. •	 Authors hypothesize that the text messages may be perceived 

as impersonal, whereas the voice reminders were from staff that many of the patients would know personally. 

•	 Currently VA does not consider text messages a secure means 

of communication. If it were simply for appointment reminders, this might be acceptable.

d application for caregiver to 

nal stories about caring for their 

pression. Includes writings of 

, poems, stories, video clips. 

d to encourage and facilitate 

and social support among a 

of caregivers.

•	 Satisfaction with tool high (mean 5.75 (SD 1.66) on 7 pt scale).•	 Satisfied with way stories presented, 6.19 (0.95). •	 Satisfied with factual information, 5.44 (1.70).•	 Rating of hurtfulness, 1.43 (1.14).•	 Potential harm to youth, 1.79 (1.14).•	 No negative impact on relationship with child.•	 8 parents thought there were parts that were not helpful. This related 

to repetitive factual information, or material that may not be appropriate for the website, i.e. bipolar, and medications issues.18 said parent stories most helpful. 14 said youth stories most helpful.

•	 3 subjects said parts were hurtful, including “sadness and worry” 

realizing child was depressed; and “hurtfulness” learning how many youth are depressed.

•	 Ideas for improvement included greater number and range of stories, 

i.e. beyond hospitalization stage (n=3), geared to younger audience (n=2); more info on meds (n=2) and narratives by siblings and extended family members (n=2). 

•	 Other suggestions were for more info on meds (n=2), more specific 

advice for parents (n=2), and more information on community resources (n=2). Two suggestions to make the web site more interactive, e.g. Q&A forum with providers, and parent-to-parent forum.

•	 Specific impacts were highest for giving a sense that others are dealing 

with same issues (mean=6.44 (SD=0.91) on 7 pt scale), helpful to read about other families, 6.06 (1.39), decreases isolation 5.83 (1.51), increases hope, 5.44 (1.42) increases their understanding of the experience, 5.4 (1.38) and increase sense of perspective, 5.26 (1.56).

Was not assessed in a systematic way. Social networking reduces sense of isolation; however, 8 parents thought there were parts of the website that were not helpful. This related to repetitive factual information, or material that may not be appropriate for the website, i.e. bipolar and medications issues.
35

et-based Approaches for Supporting Non-professional Caregivers Evidence-based Synthesis Program

ription of the Intervention Results Findings on usability of technology

•	 Coping: 29 said it helped understand symptoms of depression, 24 said 

it gave sense of how common depression is, 19 said it increased their understanding of their child’s experience.

•	 Attitude change: there was a moderate degree of attitude change (did 

the tool help you understand your and your family’s feelings about childhood depression, mean 4.88 (SD not provided); do you think the tool had any effect on how supportive you and your family are of each other, mean 3.41 (SD not provided)).

signed to improve communication 

egivers and patients. RCT was 

y because PDA intervention did 

ctionality expectations.

None reported. Low usability: interviews and questionnaires revealed multiple 

points of failure including lack of patient/parent time or energy to use device, malfunction of glucometer, lack of connectivity with an ISP (especially an issue for rural participants). 

with multiple functionalities 

betes-related information, 

rking, online simulation 

escription renewal, appointment 

contact information.

•	 Perceived reliability of content was important (local practitioners were 

responsible for portal content).

•	 Perception that information is outdated or used infrequently could lead 

to decline in use over time.

•	 Users can generate useful information to share with others, but this 

utility is likely to be weakened by low traffic on site.

•	 Login requirement to access site limited its use. Most common 

negative experiences with portal were access related issues. 

•	 Feasible, but upkeep would require resources.•	 In order to be perceived as useful, CHIT needs to be updated 

frequently and have a certain critical mass of users (if there is a social networking component). Also, the login access issues seem an important barrier as well. 

eived up to 5 weekly text Messaging system was linked 

ization registry. The messages 

ucational information about the 

 information about Saturday flu 

cs. Texts were personalized (e.g. 

ame in body of text).

•	 Higher proportion of intervention group received immunization, 

compared to controls. 42.6% of intervention (n=1653) compared to usual care (39.9%; n=1509) had received flu vaccine as of March 31, 2011, (difference=3.7%; CI=1.5%-5.9%), relative rate ratio=1.09 (1.04-1.15; P=0.001). 

•	 At the earlier (fall 2010) review date the difference also existed: 

27.1%,n=1026 vs. 22.8%,n=864 (difference=4.3%; CI=2.3%-6.3%), RRR=1.19 (1.10-1.28; P<0.001).

•	 Low income populations that are traditionally hard to reach 

were responsive to text messaging technology for preventive care reminders.

•	 Currently VA discourages text messages for clinical care 

because they are not felt to be secure. 

•	 Feasible; might initially need a vendor the does large scale 

texting.

ext messaging system. 

logged in on line and entered 

ct info for patient and caregiver, 

name and frequency, and 

 for alerts. Messages initially 

on responsible for medication 

on (patient or caregiver). If they 

 back message confirming med 

giver would be notified after 30 

d. 

•	 Outcomes included tacrolimus level SD (higher the SD, higher risk of 

rejection), and biopsy-proven rejection episodes. 

•	 Mean tacrolimus SD:

Pre: 3.46 μg/L, Post: 1.37 μg/L (P <.005)Biopsy-proven rejection in one year (data available for all 41 pts) -Pre: 12/41, Post: 2/41, (P = 0.02).

•	 High attrition (37%). •	 Simple, potentially feasible intervention that could potentially 

be useful for adult transplant patients (or similar disease dependent on strict adherence). 
36

et-based Approaches for Supporting Non-professional Caregivers Evidence-based Synthesis Program

ription of the Intervention Results Findings on usability of technology

nk includes multiple functions 

ceive daily updates from NICU, 

ics of baby, communicate with 

access personalized knowledge 

wborn care, provide feedback re: 

s. Nurses could communicate 

 via the portal. Access to medical 

rary also available. Post d/c, 

 also used to support care 

 and follow-up coordination. 

•	 LOS comparing parents who viewed < 3 pages/d to those who viewed 

≥ 3 pages/d: reduction in LOS among high use group compared to low use group was 17.5 days, p = 0.03.

Apparently, company no longer in existence.

 results (positive and negative) 

 on a website for parents to 

email was sent to the parent 

the culture result was available 

te.

•	 61% (186/303) accessed their child’s culture result on the Internet system. •	 Eighty percent (243/303) of families were reached for follow-up and 

27% of these (66/243) reported they had “no time” to go to the website to view results, 10% had lost their login ID, and 20% did not use for other reasons; 43% (104/243) of those reached for follow-up accessed the system within 5 days after results were posted and before receiving a phone call from the research assistant.

•	 The time from sending the email notifying the family that results were 

posted until the results had been viewed was mean of 94 hours (range 1 minute to 611 hours).

•	 Of 141 families (104 at 5-day follow-up, plus 37 at 10-day follow-up) 

who retrieved information from website and who were reached for follow-up, 16% printed the information, 26% reported the results to a family physician or pediatrician, and 5% had changes in treatment made because of the results they saw on the website.

•	 About 10 to 12% reported that they lost the ID number that 

would allow them to get the culture results. 

•	 Training could have helped to reduce the numbers of parents 

who never accessed the system.

•	 This study points to the feasibility and interest from caregivers 

of having access to cultures/lab results of the family member they are caring for. Majority of parents seemed to appreciate the opportunity to find the culture results online. This kind of access is now built into most electronic Personal Health Record systems. 

ized Sleep Profile (CSP) vides parents with individualized 

based on parent survey 

n three domains:

 comparison of their child to 

n, on sleep patterns;

heir child as excellent, good, or 

eeper;

ed advice on how to help their 

etter.

 arms:

c Internet-based intervention;c Internet intervention PLUS 

edtime routine;

oup.

•	 Maternal sleep improved (onset latency, total sleep time, number and 

duration of night wakings, sleep efficiency, total sleep quality) P<0.001; at end of treatment, 25% of mothers in control group were good sleepers vs. 33.3% in Internet group and 47.6% in Internet + routine group (Chi-sq=10.72; p=0.005). 

•	 Maternal mood improved, measured by Profile of Mood States 

(POMS). Significant improvements for mothers in the Internet + routine group were found for all subscales of the POMS (P < 0.001). 

•	 For mothers in the Internet only group, there were significant 

improvements in tension, depression, fatigue, and confusion (P < 0.001).

•	 Overall, children in intervention groups had decreased sleep onset 

latency, decreased number/duration of night wakings, increased sleep continuity, and increased nighttime sleep (P < 0.001). Examples: for Internet group number of night wakings went from 1.81 to 1.44 to 0.99, from baseline, to week 2, to week 3 (p<.001), whereas no significant difference for the control group. There were few significant differences found for the control group.

•	 Tailored sleep instruction for parents of children was very 

helpful in the short-term in reducing child sleep difficulties and improving mood of mothers. 

•	 Survey responses indicated satisfaction with the intervention, 

i.e. 90% found the recommendations helpful; and 93% stating they would continue to use recommendations after the study. 

•	 Usability testing not well described but it appears that it was 

assessed by a small number of survey items.
37

et-based Approaches for Supporting Non-professional Caregivers Evidence-based Synthesis Program

ription of the Intervention Results Findings on usability of technology

mponent of the Online Family 

ving (OFPS)

stic information and educational 

ch is presented in 12-14 

ssions. There are core sessions 

 sessions assigned based on 

 Sessions were interactive, with 

ering responses to questions and 

edback from Web site. Exercises 

y family stored and reviewed 

st. Each session paired with 

us on-line videoconferencing 

 therapist. 

p received IRC which consisted 

 static TBI information on 

ilies in both groups received 

omputing equipment. 

•	 Parents with no history of prior computer use were less likely to benefit 

from OFPS intervention (see Wade studies). The improvements in depression and anxiety seen with OFPS were limited to those parents who had prior experience with computers. 

•	 Depression (CES-D): OFPS v IRC, mean (SD)

9.25 (7.09) v 18.15 (13.49), p <.05

•	 Anxiety inventory: OFPS v IRC, mean (SD)

9.25 (4.99) v 14.05 (7.50), p <.05

•	 Global psychiatric symptoms (SCL-90-R): OFPS v IRC, mean (SD) 

73.45 (9.61) v 69.16 (10.02), p >.05

•	 Analysis of moderators of treatment efficacy found only parental 

socioeconomic status and social advantage were correlated with caregiver outcomes.

•	 Effects of OFPS did not appear to be entirely mediated through 

changes in parental problem solving skills.64

•	 Feasible but quite resource intensive: each family was given 

a computer, printer, and webcam for the intervention, and inperson training on use of equipment/intervention done by an RA. 

•	 Parents with no prior computer experience were more likely to 

miss sessions. 

•	 Families ranked web site as moderately to very easy to use.•	 The type of webcam affected favorability ratings of the 

videoconferencing as did the audio interface. 

•	 Half of the computers were infected with viruses.•	 All but 1 parent rated Web site as moderately to extremely 

easy to use.64

•	 The study population was not highly educated (about half had 

no more than high school education), suggesting a complex web-based intervention may be feasible in populations with varied educational backgrounds.64

 Problem Solving Intervention 

e OFPS described above, but 

specific content was different 

 more on executive function 

•	 TOPS intervention reduced parental depression and distress, and 

improved communication between parents and children.

•	 Conflict Behavior Questionnaire (CBQ - measures parent-adolescent 

communication), pre v post scores: 4.58 (4.40) v 2.08 (1.78), p = 0.04

•	 Global psychiatric symptoms (SCL-90-R), pre v post scores:

53.00 (12.66) v 50.83 (10.51), p = 0.30

•	 CES-D, pre v post scores: 13.17 (9.11) v 6.92 (6.36), p =.01•	 Child Behavior Checklist (CBCL - parent reported measure of child 

behavior problems): fewer internalizing symptoms post-intervention, no difference in total score

•	 Children’s Depression Inventory (CDI), pre and post scores:•	 1.56 (1.51) v 0.67 (0.71), p = 0.02

•	 All families completed all modules.67

•	 Most participants found website very or extremely easy to use. •	 Almost all participants agreed they reached goals they had for 

program. 

•	 All families completed all 10 core sessions. Average time spent 

on each session: 40 min.68

video segments, parents can 

 child reactions and receive 

n a care plan. 

•	 Parents reported high levels of satisfaction with web site and with 

video intervention. 

•	 Interactive web group more likely report they would use intervention 

tools in the future than video only group (76 vs 44%, p < 0.05). 

•	 Otherwise, no real differences between video and interactive web 

groups.

•	 Not formally assessed. •	 Interactive web intervention did not seem to produce different 

knowledge or satisfaction results than video-only intervention, though sample was small and baseline knowledge among this well-educated sample was high. 
38

Mobile Applications and Internet-based Approaches

for Supporting Non-professional Caregivers Evidence-based Synthesis Program

KEY QUESTION #3. What are the major gaps in the consumer health 

information technology literature serving non-professional caregivers 

of adult patients with regards to technology development, availability, 

and/or evaluation? 

Table 3 summarizes the interactive applications and functionality of the interventions included 

in this review, and indicates the current phase of the interventions’ lifecycle at the time of 

publication. 

The CHIT literature reflects a relatively new, developing field. Most studies described 

interventions in early development (ten studies) or pilot-tested (five studies) on a small scale. 

Only seven studies were developed to evaluate health outcomes, but most of these were 

relatively small studies. There is a dearth of literature describing the health outcome effects 

of CHIT in larger populations. Some of the larger studies involved interventions, such as text 

messaging, which might be logistically simpler to deploy and test on a large scale. Almost no 

studies evaluated the actual implementation of interventions that had already been tested and 

found to be efficacious.

Reviewed studies were also not designed to qualitatively develop a contextual understanding of 

the use of the intervention technology. At this time, there is not information to assess how these 

interventions fit into the day-to-day lives of caregivers. Additionally, there is relatively little 

information about how caregiver demographic characteristics affect the user experience. These 

are promising areas for future research; however, longer horizons will be necessary to assess 

usage over time given that caregivers’ needs for information, skills, and support are likely to 

evolve.

Intervention content varied widely. Nearly half the interventions, interestingly, included a 

component designed to facilitate peer communication. On the other hand, despite the focus on 

supporting caregivers, relatively few interventions included components specifically designed 

to enhance communication between caregivers and patients. Similarly few studies analyzed 

outcomes separately for caregiver and patient users; notable exceptions were CHESS,23

Caring~Web,27 WECARE,34 and The Schizophrenia Guide.35 Thus, it largely remains unclear 

if there are differences between caregivers and patients in their interactions with and benefit 

derived from technology. This likely has implications for perceptions of value, usability, utility, 

and satisfaction, as well as usage and challenges to adoption. Studies that simultaneously enroll 

both the patient and caregiver as a dyad, as was performed in CHESS,23 WECARE,34 and Dew 

et al.38 may provide an opportunity to better understand these relationships. The question of 

whether technology implementations should be designed for the caregiver or the patient, or both 

as the end user is not answerable from the current literature, and may be best addressed by expert 

opinion and consensus. Other important gaps include an understanding of how these mobile 

interventions complement existing services. We also found very little information about the costeffectiveness of CHIT.
39

Mobile Applications and Internet-based Approaches

for Supporting Non-professional Caregivers Evidence-based Synthesis Program

Table 3. Summary of the functionalities available in health informatics interventions to support 

non-professional caregivers, stratified by care-recipient population

Study

Intervention Application/Functionality Category Phase in Intervention Lifecycle

Reminders, 

Notification

Education 

Modules, Build 

skills

Self-Care, 

Feedback

Peer-Peer

Caregiver-Patient

CaregiverProfessional

Transaction Tool

Development

Pilot

Evaluation

Alzheimer’s and cognitive impairment

Alzheimer’s Caregiver 

Internet Support 

System (ACISS)

Vehvilainen, 200214

√ √ √ √

AlzOnline

Glueckauf, 200471 √ √ √ √

Becker, 200615 √ √ √

Caregiver’s Friend: 

Dealing with Dementia

Beauchamp, 200516

√ √ √

Internet-based support 

services (ICSS) for 

Chinese caregivers of 

people with AD

Chiu, 200517

Chiu, 200918

√ √

ComputerLink

Bass, 199819

Brennan, 199520

√ √ √ √

Network Interaction 

Therapy

Kuwahara, 200421

√ √ √

Cancer

OncoLife

Hill-Kayser, 200922 √ √

Comprehensive Health 

Enhancement Support 

System (CHESS)

Namkoong, 201123

√ √ √ √ √

Nolan, 200624 √ √

Prostate Interactive 

Education System 

(PIES)

Diefenbach, 200425

√ √

Stroke

Caring~Web

Pierce, 200926

Steiner, 200827

√ √ √ √

Mental illness or traumatic brain injury

Stjernsward, 201132 √ √ √

Glynn, 201033 √ √ √ √
40

Mobile Applications and Internet-based Approaches

for Supporting Non-professional Caregivers Evidence-based Synthesis Program

Study

Intervention Application/Functionality Category Phase in Intervention Lifecycle

Reminders, 

Notification

Education 

Modules, Build 

skills

Self-Care, 

Feedback

Peer-Peer

Caregiver-Patient

CaregiverProfessional

Transaction Tool

Development

Pilot

Evaluation

Web Enabled 

Caregiver Access 

to Resources and 

Education (WE CARE)

Rotondi, 200534

√ √ √ √

The Schizophrenia 

Guide

Rotondi, 200535

√ √ √ √

Chiu, 200636 √ √ √

Surgery and heart transplantation

Huang, 200637 √ √

Dew, 200438 √ √ √ √

Frail elderly, disabled NOS, and home parenteral nutrition

Assisting Carers 

using Telematics 

Interventions to meet 

Older Persons’ Needs 

(ACTION) 

Magnusson, 200540

Chambers, 200239

Magnusson, 200541

√ √ √ √ √

Finn, 199942 √ √

HPN Family Caregivers 

Website

Fitzgerald, 201143

√ √ √

Studies in pediatric populations

ADHD

Ossebaard, 201044 √ √

Arthritis

Stinson, 201045 √ √ √ √

Asthma

Krishna, 200046

Krishna, 200347

√ √

Atopic dermatitis

Bergmo, 200948 √ √

Cancer

Askins, 200949 √ √ √

Cancer

Ewing, 200950 √ √ √ √

Cancer

Han, 200151 √ √

Cancer:

Caring Connection52 √ √ √

Cerebral palsy

Gulmans, 201053 √ √
41

Mobile Applications and Internet-based Approaches

for Supporting Non-professional Caregivers Evidence-based Synthesis Program

Study

Intervention Application/Functionality Category Phase in Intervention Lifecycle

Reminders, 

Notification

Education 

Modules, Build 

skills

Self-Care, 

Feedback

Peer-Peer

Caregiver-Patient

CaregiverProfessional

Transaction Tool

Development

Pilot

Evaluation

Cystic fibrosis, 

diabetes, or arthritis

Britto, 200954

√ √ √

Dental

Nelson, 201155 √ √

Depression

Demaso, 200656 √ √

Diabetes

Keshavjee, 200357 Unclear √

Diabetes

Nordfeldt, 201058 √ √ √ √ √ √

Influenza

Stockwell, 201259 √ √

Liver transplant

Miloh, 200960 √ √

Neonatal ICU: Baby 

CareLink

Safran, 200561

√ √ √ √

Post-ER visit

Goldman, 200562 √ √

Sleep disturbance: 

Customized Sleep 

Profile (CSP)

Mindell, 201163

√ √

TBI: 

Online Family ProblemSolving (OFPS)

Carey, 200865

Wade, 200466

Wade, 200664

√ √ √

TBI: Teen Online 

Problem Solving 

Intervention (TOPS)

Wade, 200867

Wade, 200968

√ √ √

Traumatic injury 

excluding TBI

Marsac, 201169

√ √ √
42

Mobile Applications and Internet-based Approaches

for Supporting Non-professional Caregivers Evidence-based Synthesis Program

DISCUSSION

As the need for most cost-effective and resource-limited healthcare services gains greater 

urgency, the VA plans to expand CHIT web and mobile applications for patients and caregivers 

is essential. A small but growing body of literature examines CHIT interventions developed 

and tested for non-professional caregivers. Overall, a broad diversity of interventions has been 

identified; the majority were multi-component online tools intended to improve knowledge, 

skills and coping, and provide social support of caregivers. Many of these interventions offered 

communication functions such as online peer support groups, email access to clinicians such as 

nurse specialists, and educational content promoting stress-relief, wellbeing, and coping skills. 

Studies also reported a broad diversity of outcomes with little consistency, including patientcentered outcomes, usability, usage, and user-perceptions. The one exception being that user 

satisfaction was frequently reported. In all, only six studies in seven publications reported 

caregiver burden, strain or other caregiver-centered outcomes in the adult literature.16,18,20,23,26,38

Given the heterogeneity of interventions and measured outcomes, as well as of the evaluative 

methodologies used, it is difficult to draw over-arching conclusions regarding the impact of these 

technologies on caregivers, patients, or health systems.

Common intervention components

Online support groups were common among the interventions, and often the most frequently 

used component. Online support groups were typically threaded discussions on the website or 

group emails that facilitated asynchronous communication. Only one intervention provided realtime, synchronous communication in an online chat room so that multiple family members of 

a schizophrenic patient could participate in an online, professionally-mediated group therapy 

session despite the family members being in disparate locations.33 Asynchronous, online support 

groups have advantages compared to their in-person counterparts such as mitigating obstacles of 

distance and time-constraints, as discussed previously. 

Formal online support groups with restricted membership enrollments that are organized around 

specific applications and interventions may have benefits not seen in the informal, loosely 

structured, Internet interest groups, message boards, and chat rooms more typically seen on the 

web.23 CHESS investigators suggested that while the latter builds community around a shared 

condition or illness, formal online support group participants experience an increased sense of 

belonging as a result of restricted group membership, association with a single institution or 

organization, linked educational components, and shared clinical providers. Multiple studies also 

speculated on the benefits of professionally-mediated online discussions.27,28,32,33,38 Usually, the 

participating professional was a nurse specialist prompting discussion with thought-provoking 

questions or providing a clinical perspective to the online support group. Finn et al. believed that 

such a curator role was essential to re-direct misinformation.42 Rotondi et al. suggested that a 

curator may be necessary to quell negative comments, although in their experience, such events 

were rare.34 The benefits and unintended consequences of a moderator within a peer support 

function persist as an issue. 

Applications allowing users to pose questions to a clinician were frequently included in the 

interventions. In the adult literature, interventions provided this functionality via an email to a 
43

Mobile Applications and Internet-based Approaches

for Supporting Non-professional Caregivers Evidence-based Synthesis Program

nurse specialist from the website; none used alternative technology such as SMS/text messaging 

or web-based forms. In the pediatrics literature, use of SMS/text messaging in the evaluated 

intervention was quite common. A possible explanation is that parents in the pediatric literature 

are likely younger on average than their counterparts who are caring for adults with chronic 

illnesses. Thus, parents of young children and adolescents may be more familiar with current 

mobile phone and computing technologies. Regardless, caregivers appreciated the access to 

clinicians both through mediated online discussion groups and email “Ask an Expert” functions 

as it increased their perceptions of support and self-confidence.73

Providing distinct, parallel, private online support groups each for caregivers and patients – that 

was inaccessible to the other – was emphasized by two studies.34,38 Caregivers in particular held 

that they were “better able to voice their concerns in a separate forum” and that this was crucial 

to promote candid, reflective online discussions.

Generalizability

Many studies may reflect utility in highly selected populations. Most studies do not report 

details regarding the recruitment process, thus it remains unknown how many potential-users 

did not sign-up for the study, and how they might differ from the study population. For example, 

the only adult study reporting this data found that as many as 45 percent of those approached 

declined to sign-up because they were too busy, under too much stress, or did not see utility in 

the intervention.18

Several studies questioned whether Internet-based applications are appropriate for all users. 

Concerns include a lack of human contact in online communications;28 online support groups 

may not provide the equivalent emotional support of in-person groups;34 caregivers may not 

welcome outside, non-familial support;30 caregivers may reject technology-based support 

because it is too costly, of insufficient quality, or not geared to their routines and preferences; and 

replacement of face-to-face interactions with Internet applications may not be appropriate for 

caregivers who are particularly overstretched and overburdened, as such individuals may require 

more active support than can be provided online.41 Some of the most highly valued components, 

such as online support groups, might have less benefit in younger populations that are already 

comfortable with using existing social networking applications, such as Facebook.

Some studies included accommodations specifically meant to increase intervention applicability 

for older caregiver populations,15,41 but many studies reported on caregiver users with a mean age 

of 55 to 60 years. Magnusson et al. corrected a common misconception in their assertion that the 

elderly are not inherently negative about technology but, instead, require additional training and 

learning time, and increased computer/Internet access and support compared to younger users.73

Older caregivers may also benefit from applications with special accommodations for aging 

vision and manual dexterity.

The applicability and transferability of the interventions to a VA population remain unclear as 

only one study specifically evaluated Veterans. Many of the interventions could conceivably be 

applicable to caregivers of Veterans. For example, a number of interventions targeted conditions 

frequently seen in Veteran populations such as dementia, cancer, and traumatic brain injury. 
44

Mobile Applications and Internet-based Approaches

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While several studies detailed their security procedures,17,18,32,33,35 many studies provided 

relatively little information. Whether these procedures meet VA’s standards for privacy and 

information security would need to be determined. However, no studies reported privacy 

concerns from a patient or caregiver perspective.

Additional barriers to technology implementation

Some investigators raised specific concerns about incorporating Internet technologies in to the 

collection of care services already being provided. Among these were that users will still have 

time constraints that may preclude taking full advantage of online resources,23 the challenges of 

designing tailored resources for a broad diversity of users with different cultural backgrounds,34

complications of medical practice when users/patients may reside in neighboring states in 

which their providers are not licensed,35 and systems to adequately manage emergencies that are 

revealed online (such as suicidality).33

User experience

Technology development infrequently involves the end user, often resulting in underutilization 

or rejection of the intervention.41 Many investigators asserted that patients and caregivers should 

be included in development of intervention content, not just to ensure harmonization with the 

caregivers’ current life process and perception of need,30 but also to “validate and reinforce 

the importance of their role.”41 Several researchers described qualitative, observational data 

regarding the types of content that caregivers desired. Keaton et al. state that adults learn 

experientially, and need information that is immediately useful and relevant to their situation.28

Pierce et al. found that caregivers wanted additional information about the care-recipients’ 

medical conditions.31 Rotondi et al. described their unpublished data suggesting caregivers 

want better skills for dealing with the medical, cognitive, and behavioral sequelae of illness and 

injuries, and assistance identifying additional community and financial resources. 

Formal usability testing was seldom described in the literature; however, tools do exist, including 

the Website Analysis and Measurement Inventory (WAMMI)39 and System Usability Score 

(SUS).32 In addition, a U.S. government website provides other tools for measuring usability, as 

well as descriptions of underlying principles.77

Inability of users to access website content was frequently acknowledged in studies. In some 

cases, these issues could not be overcome despite provision of computers, Internet connectivity 

and/or training to users. Familiarity and comfort with technology was cited as a possible 

explanation, which may disproportionately affect older adults. Magnusson et al. asserted that the 

elderly are not inherently negative about technology but have increased challenges due to less 

computer access, requiring longer training, and a lack of confidence.73 Additional allowances for 

training and education may overcome such barriers, and technology can accommodate for the 

physical deterioration of age or chronic illness such as decreased vision and mobility.

Three pediatric studies raised potential concerns regarding online support groups. Parents of 

children with cancer experienced distress to postings about the death of a child.51 Two other 

studies cited the need for a critical mass of participants to foster active discussion.32,50
45

Mobile Applications and Internet-based Approaches

for Supporting Non-professional Caregivers Evidence-based Synthesis Program

LIMITATIONS

In setting out to perform a systematic review of a new healthcare technology, a chief limitation 

is the pace of change. The healthcare mobile application market is seeing unprecedented growth 

and dissemination. Although research is ongoing, the evidence base within the published 

literature has yet to appear. Thus, while this was intended to be an expansive review, we noted 

that many relatively new technologies such as text-messaging, tweeting, and interactive, gamebased applications were not represented in the articles captured and reviewed.

Our review focused on CHIT used by caregivers; we acknowledge there are technologies tested 

only in patients that could conceivably be used by caregivers, but these were outside of the scope 

of this review. Of note, our review scope also excluded telehealth and telemedicine interventions, 

even though these are interventions that could potentially be adapted to mobile platforms – these 

are the subject of other reviews.78-81 The review also excluded interactive voice response, or 

IVR, technology. IVR systems are automated, computerized telephonic interventions that deliver 

individualized messages and collect feedback from targeted users through voice recognition 

and telephone keypads. Though outside the scope of our review, IVR has promise as a CHIT 

intervention, particularly in populations with lower access to the Internet or smartphones or for 

delivering less complex interventions. IVR has been assessed in a variety of settings and medical 

conditions relevant to VA, including depression,82 tobacco use,83 post-discharge care,84 heart 

failure and diabetes.85 IVR appears acceptable to patients including those with mental health 

conditions,85 and has shown positive effects on patient behavior related to screening, prevention, 

treatment follow-up and medication reminders.86,87

The lack of a common taxonomy for CHIT might have made it more difficult to find all 

potentially relevant intervention studies as they may have been indexed in ways that we did not 

cover in our search strategy. We used a broad search strategy (Appendix A), and we searched 

bibliographies of included articles. Finally, as this is primarily an exploratory review, we did not 

conduct formal quality assessment of included studies. Many of the included studies represented 

pilot or developmental phase interventions with numerous methodologic weaknesses such as lack 

of control groups and small sample sizes. The results of this review should not be interpreted to 

provide definitive evidence about intervention efficacy. 

CONCLUSION

There is a growing literature of CHIT interventions that are being developed for non-professional 

caregivers. Overall, a broad diversity of interventions has been identified; the majority were multicomponent online tools intended to improve knowledge, skills and coping, and provide social 

support of caregivers. Many of these interventions offered communication functions such as online 

peer support groups; email access to clinicians such as nurse specialists; and educational content 

promoting stress-relief, wellbeing, and coping skills. However, usability testing was infrequently 

reported. Given the heterogeneity of interventions and measured outcomes, as well as of the 

evaluative methodologies used, it is difficult to draw over-arching conclusions regarding the impact 

of these technologies on caregiver, patient, or health system outcomes. Formal usability testing can 

identify important challenges and should be incorporated more often in the development process. 

Patients and caregivers should be involved in the design and improvement of interventions.
46

Mobile Applications and Internet-based Approaches

for Supporting Non-professional Caregivers Evidence-based Synthesis Program

Below is a list that summarizes the emerging themes and future research directions for CHIT 

interventions:

• Consumer health technologies for caregivers may improve caregiver strain, coping 

strategies, self-efficacy, intention to obtain additional support, depression, anxiety, and 

anger.

• Online access to expert care from healthcare providers via text-messing, Q&A, FAQs, 

etc. are also highly valued and may supplement existing communications.

• Text-messaging systems can reach significant numbers of caregivers and have been 

examined as a way to enhance compliance to medications and preventive health actions.

• The asynchronous nature of communication in online peer support groups and textmessaging may facilitate participation by mitigating geographic and temporal barriers.

• Online peer support groups and chat rooms were the most-used and most-valued 

components in several interventions.

• In online support groups, anonymity through the use of a Screen Name or User ID was 

valued by caregivers and patients, and should be incorporated. 

• Privacy issues did not emerge as a major concern for caregivers and patients and 

should not necessarily be perceived as a barrier to the development of consumer health 

technologies.

• Technical barriers and lack of familiarity with technology are the most frequently cited 

reasons for failure to participate in a technology intervention. 

Future directions:

• Consumer health technologies may reduce the frequency of emergency visits and 

hospitalizations.

• Benefits of consumer health technologies may occur with even limited, and short-term 

use.

• User-centered design likely improves the utility, usability and usage of technology 

implementations; caregiver and veteran participation in the design and development of 

consumer health technologies should be solicited.

• Pre-implementation planning and budgets should assign resources to assist caregivers and 

veterans with access issues and ongoing technical support, and programs should assess 

the optimal levels of technical assistance and training required. 

• Programs should assess how technologies can be tailored to the language and cultural 

needs of the caregiver and Veteran.

• Study whether formal online peer support groups exclusive to the VA have advantages 

over existing informal online interest groups.

• Caregivers and patients may seek immediately useful and relevant information online, 

such as skills improvement and assistance identifying community and financial resources. 

Future technology implementation interventions should explore their utility and methods 

for keeping information current.

• There is a need for more studies using mixed-methods and formative evaluation methods 

to help clarify effects and implementation strategies for these complex health technology 

interventions. 
47

Mobile Applications and Internet-based Approaches

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• There are several future research questions that may be of interest:

○ What are the optimal methods for implementing consumer health technologies in 

existing healthcare systems?

○ Does the use of consumer health technologies such as chat rooms, online peer 

support groups, and text messing with providers replace or complement face-toface interactions?

○ How are consumer health technologies integrated into the day-to-day lives of 

caregivers?

○ How do caregiver demographics affect the user experience?

○ Are there differences between caregivers and Veterans in the user experience?

○ Develop tools to enhance caregiver-Veteran communication.

○ Studying the implementation of interventions within the VA using tools with broad 

reach, such as My HealtheVet.
48

Mobile Applications and Internet-based Approaches

for Supporting Non-professional Caregivers Evidence-based Synthesis Program

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