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From the Department of Psychiatry and Behavioral Sciences, University of Miami School of Medicine, Miami, Florida.
Address reprint requests to: Sara J. Czaja, PhD, Department of Psychiatry and Behavioral Sciences, University of Miami School of Medicine, 1695 NW 9th Ave., Suite 3204, Miami, FL 33136. Email: sczaja{at}med.miami.edu
| ABSTRACT |
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METHODS: The intervention involves a telecommunications system designed to augment a family therapy intervention by enhancing access to formal and informal support services. Specifically the system is intended to facilitate linkages between caregivers and other family members, friends, and other caregivers as well as to facilitate access to information on available resources. A total of 76 caregivers of dementia patients, including Cuban American and white American caregivers, received the telecommunications intervention. Data include real-time usage data and measures of usability at 6 months, 12 months, and 18 months after the initiation of the intervention.
RESULTS: The data reported in this article are based on responses to the usability questionnaire at 6 months from a sample of 44 caregivers. Overall the results indicate that the system is easy to use and the caregivers find it valuable. The most common reason that the caregivers use the system is to communicate with other caregivers, especially those who are not nearby. The caregivers, especially the Cuban Americans, reported that the system facilitated their ability to communicate with family members and their therapist. The caregivers also indicated that they found participation in the "online discussion" groups to be very valuable and also found the "online resource guide"useful.
CONCLUSIONS: The results demonstrate how current information and communication technologies can be used to help caregivers meet the challenges of caregiving and improve the quality of life for caregivers. The potential benefit of this type of technology for health care providers is also discussed.
Key Words: technology-based interventions, telecommunication interventions, caregiving, Alzheimers disease.
Abbreviations: AD = Alzheimers disease;; CTIS = computer-integrated telephone system;; REACH = Resources for Enhancing Alzheimers Caregiver Health Project;; SET = structural ecosystems therapy;; TLC-AD = Telephone-Linked Care for Alzheimers Disease.
| INTRODUCTION |
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During the past decade there have been a substantial number of studies directed toward the development of interventions for family caregivers. These interventions include family and community support groups, respite care programs, and psychoeducational programs such as skills training. However, despite the proliferation of these intervention programs, they have had only limited success for a variety of reasons. Services are not always available to caregivers, and many caregivers are unwilling to use available community services because of issues such as cost, logistical problems, or feelings of guilt about receiving help outside the family structure. For example, problems such as difficulty arranging alternative help, inaccessible meeting places, or scheduling conflicts often prevent family caregivers from attending support group meetings (5). These findings suggest that current intervention strategies may need to be modified to be more responsive to the needs of caregivers.
Current information technologies offer the potential of providing support to family caregivers of dementia patients. Computer networks can link caregivers to each other, family members, friends, and local support organizations. Many caregivers report isolation from family members and friends and having to give up pleasurable personal activities. Isolation from family members is especially problematic for caregivers who are geographically distant either from friends and family or from the care recipient. It is quite common for family members within the United States to be dispersed among different geographic regions. In fact, nearly 7 million Americans are long-distant caregivers for older relatives (6). Clearly network linkages can make it easier for family members to communicate, especially those who live in distant time zones. Network linkages can also make it more convenient for caregivers to participate in support groups or communicate with healthcare professionals. Communicating via computer networks does not require caregivers to leave home or disrupt caregiving routines. Computer communication can also occur asynchronously, and computer networks can be accessed at any time of the day or night; this is especially beneficial in a time of crisis.
Information technology can also enhance a caregivers ability to access health-related information or information about community resources. The Alzheimers Association has a home page on the World Wide Web. Finally, technology can be used by healthcare professionals to monitor the status of caregivers or care recipients or to actually deliver care. For example, telemedicine technology may be used to link caregivers to mental health professionals. Most studies examining the health effects of dementia caregiving show a consistent pattern of increased depression and anxiety symptomatology among dementia caregivers (7,8).
The use of information technology as an intervention for caregivers of dementia patients is quite plausible given the increased use of technology within most domains and across most segments of the population. Most people, including older people, are willing to use technology for tasks such as seeking information and communication (9). Although research in this area is limited, there are several examples in the literature of successful use of technology among this population. Gallienne et al. (10) found that access to a computer network, ComputerLink, increased the amount of psychological support provided by nurses to a group of homebound caregivers of Alzheimers patients. ComputerLink also enabled caregivers to access a caregiver support network that enabled them to share experiences, foster new friendships, and gather information on the symptoms of the disease. Older women with breast cancer have also successfully used a multidimensional computer-based support system, CHESS. The system contains integrated information and referral, decision, and social support programs. Preliminary data indicate that the women like the system, find it easy to use, and experienced more positive emotions as a result of using the system (11).
Telephone-Linked Care for Alzheimers Disease (TLC-AD) is an automated telecommunications system for AD caregivers that is currently being evaluated by Mahoney et al. (12). TLC-AD monitors the primary caregivers stress and health status and provides a voice-mail caregiver support network, an "ask the expert" call option, and a respite function to provide caregivers with a break from caregiving duties. Caregiver Interventions via Telecommunications (CIT) is a telecommunication system designed to deliver psychotherapy to family caregivers of elders with dementia. The system has been implemented with a sample of caregivers, and preliminary data indicate that the caregivers enjoy participating in the therapy sessions (13).
The current article describes a telecommunications intervention for family caregivers of persons with dementia that is being evaluated at the Miami site of the Resources for Enhancing Alzheimers Caregiver Health (REACH) program. REACH is a multisite program, funded by the National Institute on Aging and the National Institute of Nursing Research, that is evaluating the efficacy of a variety of interventions with respect to reducing burden and enhancing the quality of life of family caregivers of persons with dementia. The intervention involves a computer-integrated telephone system (CTIS) designed to augment a home-based family therapy intervention also being evaluated at the Miami site. The intent of the CTIS is to enhance the family therapy intervention by facilitating the caregivers ability to access formal and informal support services.
The following sections provide an overview of the REACH program, the Miami component of the program, and the CTIS intervention. Preliminary data regarding the caregivers perceptions of the usability and usefulness of the CTIS intervention are also provided. The overall goals of this article are to demonstrate the feasibility of using technology-based interventions for caregiver populations and to provide some insight regarding applications that are useful for this population. Home-based technologies are relatively new for this population, and before they are broadly implemented it is important to systematically evaluate the quality, acceptability, accessibility, and cost of the technology (14).
| Overview of the REACH Project |
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| Overview of the Miami Program |
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SET, a structural family therapy intervention, is based on previous work by Szapocznik and colleagues (eg, Ref. 15) for treatment of behavioral problems in Hispanic families. The goal of the SET intervention is to identify specific family interactions that may be linked to caregivers burden, to empower the family by teaching them new ways to communicate with each other, and to restructure the familys interactions. The challenge is to identify specific problems caregivers are experiencing, the range of useable resources to the caregiver and their formal support systems, the range of useable community resources available and accessible to the family, and the capacity of the caregiver and family to collaborate in the caregiving effort (16). Treatment intensity varies on the basis of the needs of the caregivers, but caregivers could receive weekly in-home family therapy sessions for the first 4 months of the intervention period, biweekly sessions for months 5 and 6, and monthly booster sessions for months 7 to 12. The duration of the sessions is typically 1 to 11/2 hours.
The CTIS intervention augments the therapeutic intervention by facilitating linkages of the caregiver with both their family and with supportive resources outside the home. In addition, the CTIS provides the therapist with enhanced access to both the caregivers and their family members. For example, the system allows family members who are unable to attend sessions (eg, those who are at distant locations, physically incapacitated, or too frail to leave their home) to participate in therapy. The therapists can also use the system to send messages or reminders to caregivers. There is no set protocol for the caregivers use of the system since this is a variable of interest. However, both the caregivers and therapists are encouraged to use the system as often as possible.
| Overview of the Computer-Integrated Telephone System |
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REACH discussion groups.
These are "online" telephone conferences with other caregivers that are held monthly. The caregivers are invited to participate in a group with trained professionals, including family therapists (note: therapists did not facilitate groups that included their own clients).
Voice messaging.
All caregivers and their family members are provided with a voice mailbox. They may leave messages for each other and/or their therapist. Both single and broadcast messaging are available.
Reminders.
Therapists are able to leave reminders to caregivers (eg, reminding them of upcoming appointments). The reminders can be made on a one-time or daily basis.
Caregiver resources.
The contents of the local Alzheimers Association resource guide was placed on the system with active linking to the providers telephone number if selected by the caregiver. The services were arranged geographically to help the caregivers with their selections.
Caregiver respite functions.
To provide some respite to the caregiver, family members were asked to develop vignettes for the patient. These vignettes are typically reminiscences about pleasant past events shared by the patient and the family member. The patient is able to listen to these messages on the screen phone using the speaker or the handset.
The features were added in an incremental manner to minimize complexity for the user. Screen phone technology was chosen for use in this project because a telephone is highly familiar and thus the CTIS would not be perceived as a complex, entirely new technology. Furthermore, use of the system is relatively simple and requires little instruction because most people are familiar with the basic operation of a telephone. Even the most complex feature, conferencing with multiple family members, was designed to involve selection of family members in an incremental manner from a menu. It was determined that usability issues would be particularly important for caregivers because they are already faced with many demands and do not need to be burdened with complex or cumbersome technologies.
This article presents preliminary data regarding the caregivers perceptions of the usability and usefulness of the system from the usability questionnaire administered at the 6-month assessment point. Data on actual usage are also presented. The intent is to demonstrate the feasibility of using technology for this population.
| METHODS |
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2(1,44) = 3.076, p > .05), gender (
2(2,44) = 6.35, p > .05), age (F(1,75) = 0.676, p > .05), level of education (
2(2,44) = 0.77, p > .05), or income level (
2(3,44) = 6.35, p > .05). There was also no difference in terms of the caregivers relationship to the care recipient (eg, spouse vs. daughter) (
2(2,44) = 3.55, p > .05).
The respondent sample includes 21 Cuban American and 23 white American caregivers. Of these 34 were female and 10 were male. The average age of the sample was 67.5 years (SD = 12.55). Eighteen percent of the sample had less than a high school education, 23% had completed high school, and 59% had education beyond high school. Forty-eight percent of the sample had a household income of $15,000 to $29,999 per year, 14% had an income level below $15,000 per year, and 38% had an income of $30,000 or more per year. There were no significant differences between the Cuban American caregivers and the white American caregivers in gender composition
2(1,44) = 0.310, p > .05); age (t(42) = 1.84, p > .05); education
2(2,44) = 1.82, p > .05); or income (
2(3,44) = 3.19, p > .05).
The length of time of caregiving ranged from 20 years (N = 1) to 1 year (N = 5) with an average of 4 years (mean = 3.90, SD = 3.29), and the majority (68%) of the sample had been providing care for 2 to 5 years. There was no difference between Cuban American caregivers and white American caregivers (F(1,42) = 2.17, p > .05) in length of time providing care. The majority of the care recipients were moderately to severely cognitively impaired; the average Folstein Mini Mental State Evaluation score of the care recipient was 14.82 (SD = 7.64). There was no difference between the Cuban American care recipients and the white American care recipients in level of cognitive impairment (t(42) = 0.59, p > .05). Sixty-four percent of the caregivers are spouses, and the remaining 36% are daughters, daughter-in-laws, or nieces. Most of the caregivers had a CESD score (mean = 18.33, SD = 11.23) exceeding the general accepted clinical cutoff (CESD > 16) for clinically significant symptoms of depression. Level of depression did not vary significantly (t(37) = -0.972, p > .05) between Cuban American and white American caregivers.
Materials and Equipment
The CTIS is a custom-built application that uses computer-telephone technology. The computer-telephone system is based on PC running Windows NT and Visual Voice Pro software to operate three specialized telephony boards: a multiline analog interface, a digitizing board, and a conferencing board. ADSI-capable Philips P-100 screen phones, which allow both text and voice to be sent and received during an interactive session, were placed in the users homes. The phones include a handset, base unit, and display. The display is capable of displaying eight lines of text. The system allows users to place and receive calls, send and receive messages, leave reminders, access databases, and conference with several people simultaneously.
The systems present configuration makes use of 12 lines. The limitation for any single conference call is one incoming call and six outbound calls (conference participants are added by the originating caller). A user accesses the system by dialing the University of Miami REACH number and entering a four-digit personal identification number (PIN). The system identifies the user (each user is assigned a unique five-digit identification code that is linked to his or her PIN), and the messages are then given in the preferred language (Spanish or English).
System data are collected on a real-time basis for both therapists and caregivers on a per-call basis. These data include user ID, frequency of use, options selected, persons/groups accessed through the system, length of call, and time and date of call.
Users are also asked to complete a 31-item usability questionnaire assessing their perceptions of the system. The questionnaire includes items related to likes and dislikes, preferences, usability, and utility. Most of the questions require a "yes" or "no" response. This questionnaire is completed at the 6-, 12-, and 18-month assessment points.
Procedure
The caregivers and family members were trained in the use of the CTIS in their own homes by their therapist. To minimize disruption of the family therapy intervention, the CTIS was installed by the therapist over the first three visits to the familys home. The system was introduced and described during the initial visit, and caregivers were asked for a list of family members and friends they wanted placed on the menus. During the second visit the system was installed (the location was chosen by the caregiver), and caregivers and family members received training and practice using the system according to a training script developed for the project. During the third visit the caregivers were observed using the system and completed a simple training. The caregivers were also provided with a users manual and a customized, laminated help card with their PIN. The other family members also received help cards. The system also has a help function that users can access at any time during the use of the system. The help function is designed so that it is specific to each function. It is accessed by pressing the pound (#) key.
The caregivers were encouraged to use the system as often as possible, and they were given examples of potential uses of the system by their therapist. The therapists were also encouraged to use the system for messages, reminders, and family therapy sessions.
| RESULTS |
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When asked why they used their screen phone, 80% of the respondents indicated that they used the system to contact family members; in fact, 50% of the participants indicated that one of the reasons that they used the screen phone, as compared with their regular phone, was because of the connection to family and friends and because the screen phone facilitated communication (40%). Seventy-two percent of the caregivers indicated that the screen phone made it easier to communicate with their families, and 67% indicated that the screen phone made it easier for them to communicate with their therapist. The other primary reasons for using the screen phone included calls to therapists (39%), to "attend" the REACH discussion groups (34%), and to call other caregivers (32%).
The majority of caregivers (93%) found it valuable to participate in family conference calls and found the family conference calls valuable (85%). Caregivers who liked participating in family conferences (87%) were also more likely to report that they liked using the screen phone (
2(1,39) = 11.24, p < .05). In several cases, out-of-town family members were able to participate in the family therapy sessions via the conferencing feature. It should also be noted that in a few cases family members who were unwilling to participate in "face-to-face" family therapy sessions were willing to participate via the system.
The caregivers also indicated that they liked participating in the REACH discussion groups (82%) and found participation in these groups valuable (86%). Eighty percent of the caregivers participated in the discussion groups. People who liked family conferences (85%) were also more likely to report that the discussion groups were valuable (
2(1,27) = 10.55, p < .05). Concerning the caregiver resource feature, the caregivers found the link to the Alzheimers Association the most valuable (50%), followed by the link to community support groups (44%), general information and referral (40%), and respite care (33%). Participants were also queried about what other features they would like on the screen phone. The most frequent requests were information about medical benefits (59%) and community service information (41%). In this regard the Cuban American caregivers (76%) were more likely than the white American caregivers (44%) (
2(1,44) = 4.86) to indicate that they would like medical services and benefits added to the resource feature.
Perceptions of the System
Generally the data indicated that the participants like the system and found it easy to use. Most (86%) of the participants found the screen phone valuable, liked using the system (88%), and were satisfied using the screen phone to communicate (80%). The majority (88%) of the participants also indicated that they were satisfied with the design of the system. Only 16% indicated that they had difficulty using the system. When asked specifically what they liked about the phone, the most frequent responses included the ability to make conference calls and the speakerphone feature. In terms of dislikes, the most common complaint was that the system was often slow in responding.
With respect to the physical design of the system, only 13% of the caregivers indicated that they had trouble using the equipment. Some (11%) of the caregivers indicated that they had difficulty reading the screen and that the characters on the screen should be larger (39%). Few caregivers reported problems hearing their messages (8%), using the menus (12%), locating the keys (7%), or pressing the keys (7%). However, the respondents indicated that they had some difficulty remembering the procedures (31%) and using the help function (24%).
There were some ethnic differences in perceptions of the system. For example, the Cuban Americans (52%) were more likely to report that the system was easy to use than the white Americans (21%) (
2(1,44) = 4.45, p < .05), and they were also more satisfied using the screen phone (
2(1,44) = 11.45, p < .01). Seventy-six percent of the Cuban Americans indicated that they were very satisfied with the screen phone as compared with 30% of the white Americans. In contrast, 30% of white Americans indicated that they had neutral feelings or were dissatisfied with the phone, as compared with 6% of the Cuban Americans. The Cuban Americans (95%) were also more likely than the white Americans (67%) to report that they would miss the screen phone if it were removed from their home (
2(1,42) = 5.56, p < .05). The data suggested that the Cuban Americans (85%) also found that the screen phone made it is easier to contact family members (
2(1,43) = 3.09, p = .08) more than the white Americans (61%). The data also suggested that the Cuban Americans (80%) found that the screen phone made it easier for them to communicate with their therapist (
2(1,42) = 3.06, p = .08) as compared with the white Americans (55%).
| DISCUSSION |
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The data also indicated that the system was easy to use and that it was readily adopted by the caregivers. All of the caregivers were able to learn to use the system, and only a few reported any difficulty with system use. Also, the majority of the caregivers indicated that they liked using the system and found it valuable. These findings highlight the importance of consideration of usability issues in system design. The current system was chosen because it is relatively simple and highly familiar technology, thus minimizing the need for new learning. The user was also guided through the use of the system with voice and text prompts, thus minimizing the need to remember complex operating procedures or commands. With respect to design improvements, the data indicated that the design of the menus might be improved by increasing the size of the text. This would necessitate increasing the screen portion of the phone. Stability with respect to system operation is another area of needed design improvement. A frequent complaint of the participants was that the system was too slow in responding. Finally, the system might also be improved by adding additional features such as information about health benefits or other services such as legal services or community events (eg, upcoming meetings of the Alzheimers Association). Most data indicate (eg, Ref. 9) that people tend to use technology such as computers if they perceive it as useful.
In addition to facilitating communication with other family members, the system enhanced the ability of the participants to communicate with other caregivers. The majority of the participants regularly participated in the online discussion groups and indicated that they enjoyed participating in the discussion groups and found them to be valuable. Many times caregivers are unable to attend community support groups because of logistical problems such as difficulty arranging alternative help. These data suggest that online support groups may provide a feasible alternative for many caregivers. In fact, anecdotal evidence from this study indicated that several caregivers who were unable to participate in face-to-face support groups because of physical limitations were able to participate in discussion groups using the system.
| SUMMARY AND CONCLUSION |
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However, before the full benefits of this and other types of technology can be realized for caregiver populations, there are a number of issues that need to be addressed. For example, more information on applications that are useful to caregivers as well as healthcare providers is needed. Data are also needed on the cost-effectiveness of technological interventions. Information is also needed on how technology affects other outcomes, such as caregiver burden, access to services, service utilization, and the costs and benefits of technology relative to current practices (13). Finally, optimal strategies for combining technology with other interventions need to be identified, and there are a number of issues concerned with privacy, safety, and quality control that also need to be considered. Answers to these questions depend on systematic evaluations of technology. Evaluation must be considered an essential component of system design, implementation, and redesign.
| ACKNOWLEDGMENTS |
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Received for publication July 25, 2000.
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