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. 
i

Mobile Applications and Internet-based Approaches

for Supporting Non-professional Caregivers Evidence-based Synthesis Program

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.
1

Mobile Applications and Internet-based Approaches

for Supporting Non-professional Caregivers Evidence-based Synthesis Program

EXECUTIVE SUMMARY

BACKGROUND

Non-professional caregivers are an important source of physical, emotional and other support to 

ill or injured Veterans. With an increasing number of Veterans who require care and assistance for 

traumatic brain injuries (TBI), physical impairments, or other debilitating disorders such as posttraumatic stress (PTSD) and dementia, there is a greater growing demand for spouses, parents or 

other family members and friends to assume the role of caregiver. Electronic health applications 

and tools are increasingly available and have the potential to facilitate caregiving outside of 

traditional healthcare settings, especially in the context of the rising use of smartphones and 

mobile technologies. Lessons learned from prior consumer health information technology 

(CHIT) interventions could help inform the development of health-related mobile applications. 

CHIT applications are defined as electronic tools or technologies intended for use by consumers, 

by patients or family members, that interact directly with users for the management of their 

health or healthcare, and in which data, information, or other recommendations are tailored 

and/or individualized; the system may or may not link to a health professional or health system 

services. The Veterans Health Administration (VA) is currently developing mobile applications 

intended for use by seriously injured post-9/11 Veterans and their family caregivers enrolled in 

the Comprehensive Assistance for Family Caregivers program. This report was requested on 

behalf of the VA offices that are developing these mobile tools. The objectives of this report 

are the following: 1) to identify studies of CHIT applications that aim to support the needs of 

caregivers; 2) examine the usage and effects of CHIT applications on caregiver burden outcomes, 

and patient outcomes, clinical process measures, and healthcare utilization of interest; 3) discuss 

parallels that can be drawn from pediatric literature, and 4) identify gaps in the literature. 

The key questions addressed by this systematic review are as follows: 

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 outcomes for caregivers, patients, clinical 

process measures, and healthcare utilization?

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

information technologies 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?

METHODS

We conducted 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, wireless/mobile 
2

Mobile Applications and Internet-based Approaches

for Supporting Non-professional Caregivers Evidence-based Synthesis Program

technology, iPad, cellular/mobile/android/smart phone, m-health, Internet based, SMS, text 

messaging, and informatics application. We obtained additional articles from systematic reviews, 

reference lists of pertinent studies, reviews, editorials, and by consulting experts. Reviewers 

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

retrieved full-text articles for further review. We included studies if they utilized patient-facing 

and/or caregiver-facing interactive computerized health information technology, regardless 

of whether the device used in the study was mobile (smartphone, tablet, etc.) or stationary 

(desktop). We excluded non-interactive healthcare technology such as health education materials 

that are passively used. Given the broad scope of this topic as well as the presence of other 

reviews, we excluded studies focused on telephony, interactive-voice-response, synchronous 

telehealth interventions, and fixed home-monitoring technologies such as smart-homes, vitalsmonitoring, GPS and other location-monitoring, and monitoring for patient falls.

We compiled a narrative synthesis of findings, highlighting studies that evaluated the effects on 

caregiver outcomes, patient outcomes, processes, healthcare utilization and describe the common 

characteristics and themes that emerged across studies and disease categories. 

RESULTS

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

references through manual searching of reference lists or from input from technical advisors. 

After applying inclusion/exclusion criteria at the abstract level, 388 full-text articles were 

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

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?

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. Of these, there were five RCTs. The remaining studies consisted 

of feasibility studies, usability studies, pilot tests, qualitative studies, and quasi-experimental 

studies. The small sample size, variety of outcomes measured, diversity of interventions, and 

methodologic weaknesses of this body of evidence preclude any definitive assessment of health 

outcome or utilization effects of CHIT. There was little data to inform the effects of CHIT on 

clinical process measures. 

The majority of articles described interventions that provided educational content and one of 

several communication modalities: either online peer support groups, online access to providers 

through email, or general disease information and education. 

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 
3

Mobile Applications and Internet-based Approaches

for Supporting Non-professional Caregivers Evidence-based Synthesis Program

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

priorities. In some studies, online communications provided access to a diversity of 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. Researchers 

speculated that older caregivers may be less likely to benefit from mobile applications because 

they are less likely to be users of handheld technology. A survey conducted in 2012 determined 

that while 70 percent of persons aged 65+ now own a cell phone, only 16 percent use their cell 

phone to access the Internet. 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. Of 

note, no studies found that security or privacy concerns were a barrier to use of technology. 

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

health information technologies 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. 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 largest group of studies described a multi-component intervention for children with 

traumatic brain injury and their parents, in which educational material was presented in 

interactive web sessions. The intervention was associated with reduced rates of parental anxiety 

and depression in three small, unblinded trials. 

A larger trial involving asthma patients found that an intensive web-based intervention designed 

to improve parental and child knowledge of asthma reduced emergency room utilization. This 

intervention involved 44 animated lessons many covering real-life scenarios related to disease 

management and treatment adherence. Questions checked the user’s comprehension. 

Several studies also examined the role of online peer communication strategies. Parental users 

described benefits of peer support such as lowering the sense of isolation. While improving 

parental coping in some instances, users also pointed out the large volume of off-topic posts and 

posts about losing seriously ill children were detracting features. 

Two studies evaluated text messaging interventions. One small trial in liver transplant patients 

found that a text-message medication reminder system involving children and parents reduced 

rates of biopsy-proven rejection. Another very large trial found that a simple text-message 

intervention in which parents received up to five weekly text messages increased influenza 

vaccination rates in a low-income population
4

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? 

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 six 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 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 impact the user experience. These are promising areas 

for future research; however, additional research is needed. For example, studies are needed 

to assess usage of mobile applications over time and to determine the most effective types of 

information, skills, and support that are needed to improve caregiver and patient outcomes. 

The question of whether technology implementations should be designed for the caregiver or the 

patient as the end user is not answerable from the current literature, and may be best addressed 

by expert opinion and consensus. 

DISCUSSION

There is a growing literature of CHIT interventions developed and tested for non-professional 

caregivers. Overall, a broad diversity of interventions has been identified, but the literature 

is insufficient to conclusively determine the effects of CHIT on caregiver/patient, healthcare 

utilization, or clinical process measure outcomes for a particular function or a specific condition. 

There is some evidence that CHIT interventions that target skill-building and stress reduction 

can be effective. Peer support and communication were the most commonly used intervention 

components; these functionalities were usually perceived as highly valuable. Though formal 

usability testing was not described in most studies, many studies described usage in more 

informal ways. Overall, the perceived utility of various technologies and their usage appeared to 

vary depending upon the caregiver target population. Some, but not all, studies described a usercentered design process. This may be particularly important for interventions targeting caregivers 

since they are burdened with self-care and the care of others, and the technology needs to fit into 

an often busy workflow. 

It is unclear what CHIT interventions should be the focus of development in upcoming years. 

Multimodality interventions that combine different types of functions, applications, and devices 

(e.g., Internet, smart phones, text-messaging) may prove to be the most practical, given the rapid 

changes occurring in consumer technology development. Interventions focused on social support 

may reduce caregiver strain. Interventions, such as text messaging designed for cell phones 
5

Mobile Applications and Internet-based Approaches

for Supporting Non-professional Caregivers Evidence-based Synthesis Program

without Internet, can reach large and low-income populations, and may be able to improve 

specific health behaviors. No studies described integration of CHIT tools with the healthcare 

provider’s electronic medical record. A move toward greater interoperability could offer 

caregivers a valuable opportunity to access their care-recipients’ personal health data, as well as 

to input information that could be used by clinicians such as home medications, side effects, and 

patient symptoms. 

CONCLUSION 

There is a growing literature of 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 multi-component interventions offered 

communication functions such as online peer support groups, email access to clinicians such as 

nurse specialists, “ask an expert” forum where questions are answered, informational tools such 

as online libraries and consumer guides to specific diseases, and educational content promoting 

stress-relief, wellbeing, and coping skills. 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 utilization 

outcomes. Nevertheless, lessons learned about usability and user experience from these studies 

may offer some valuable insight to help guide ongoing CHIT development. 
6

Mobile Applications and Internet-based Approaches

for Supporting Non-professional Caregivers Evidence-based Synthesis Program

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
7

Mobile Applications and Internet-based Approaches

for Supporting Non-professional Caregivers Evidence-based Synthesis Program

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