Elsa Marziali, PhD, Professor and Schipper Chair, Gerontological Social Work Research, University of Toronto and Baycrest Centre for Geriatric Care, Toronto, ON.

An internet-based psychotherapeutic support group for family caregivers of persons with dementia was developed in a series of pilot studies and evaluated in a feasibility study with 34 participants. A user-friendly website was developed that included video conferencing in two formats: group and one-on-one. Following 10 professionally facilitated sessions, each group evolved into a web-based self-help support group. Six-month follow-up interviews showed overall positive participant responses with regard to learning to use computers, negotiating the website, providing mutual guidance and support, and improving management of caregiver burden and stress.

Key words: internet, caregiver, support groups.

Introduction
Family caregivers, largely women, provide the health and social care for dependent family members who have long-term chronic illnesses. Family caregiving can span many years depending on the stage of illness progression and the family’s resources for managing the needs of the care recipient. Caregiver stress and negative health outcomes are common. Intervention programs for family caregivers typically focus on a) support and/or educational groups; b) individual psychotherapy; c) interventions focused on the care recipient such as respite care; or d) combinations of two or more of these approaches. Most models of intervention produce small-to-moderate improvements in caregiver stress, depressive mood, subjective well-being, and coping ability.^1-3 Intervention programs are delivered face-to-face in either group or individual formats and are either clinic based or provided in the home of the caregiver or care recipient. Providing similar services using technology such as the Internet presents significant challenges.

E-Health Programs for Family Caregivers
Technology has been used in the past to enhance intervention strategies with family caregivers of persons with dementia. ComputerLink is an Internet-based support network including a public bulletin board, private e-mail, and a text-based question-and-answer forum facilitated by nurses.^4,5 The participants benefit in the short term but participation lags in the long term. REACH (Resources for Enhancing Alzheimer’s Caregiver Health),⁶ a comprehensive multisite research program, evaluated the benefits of interventions designed to enhance family caregiving for Alzheimer’s disease and related dementias. In addition to face-to-face support services, two of six participating sites used digital telephone systems to enhance the delivery of information and consultation to caregivers. The Internet was not used for service delivery in any of the REACH programs. Overall, the intervention programs showed benefits to caregivers in terms of reduced stress and higher skill acquisition.

Virtual Support Groups
Our intervention program for dementia caregivers was developed through a series of pilot studies and subsequently evaluated in a feasibility study implemented in two remote areas: Timmins, Ontario and Lethbridge, Alberta. For the pilot studies, three groups of six spousal caregivers agreed to participate with informed signed consent. The groups were facilitated by two experienced social workers, initially in face-to-face format and subsequently via Internet-based video conferencing. The overall aim of the intervention was to decrease the amount of stress experienced by the caregivers as well as enhance their knowledge and skills in managing the care of the dependent relative. The professional facilitators provided the intervention online for 10 sessions, and continual feedback was solicited from the participants regarding both the technical and clinical aspects of the program.

The pilot studies yielded several modules. The first was an easy-to-use, password-protected website with links to a) online disease-specific information handbooks and self care strategies for the caregiver; b) e-mail; c) a question-and-answer forum; and d) video conferencing for one-on-one communication or virtual group interactions. Secondly, we used an intervention training manual that included a theoretical framework and strategies for facilitating an online virtual group. Next, a computer training manual presented a simplified way of understanding the basic steps for using computer hardware and software (Figure 1).

These program modules were used to implement the feasibility study. In all, 34 caregiver-care recipient dyads were recruited (17 at each site with five to six caregivers of persons in each of three disease groups--Alzheimer’s, Parkinson’s, and stroke). With informed, signed consent the caregivers agreed to baseline and follow-up interviews as well as having the video conferencing sessions archived for subsequent analyses. Technicians at each site installed computer equipment and software in the homes of all participants and used the computer training manual to train the users. A clinician at each site was trained to facilitate the groups according to the intervention training manual. Subsequent to the 10 facilitated sessions, in each group a member assumed the facilitator role and the groups continued to meet weekly for an additional period of three months. Research assistants interviewed the caregiver participants in their homes prior to participating in the online group intervention and six months later.

Caregivers’ Responses
At six month follow up, over 90% of the caregivers reported benefiting from their participation in the virtual support group either “extremely” or “very” positively. They formed strong, mutually supportive bonds within the group and acquired new knowledge and psychosocial support that enhanced their caregiving role functions. All reported a decrease in levels of stress associated with caregiving and several reported that their participation in the group supported a decision to delay admission of their family member to institutional care.

When asked about their experiences using the website for communication, 78% indicated that it was very easy to use. When asked what they liked most about the website, some of the caregivers responded “that it was accessible,” and appreciated the opportunity to “have visual contact with other group members.”

Conclusions
Overall, the project results demonstrated that an online, video conferencing based intervention program for caregivers is feasible. The older caregivers with no prior experience with computers readily learned to manage both the hardware and software. This program is replicable because of the emphasis placed on careful development and evaluation of both the clinical intervention and the “Caring for Others” website through which it was delivered.

This project was supported by grants from CANARIE, Canada, Bell Canada University Laboratories at the University of Toronto, Canada, and the Katz Centre for Gerontological Social Work, Baycrest Centre for Geriatric Care. Renee Climans and Arlene Consky, social workers at the centre, provided clinical expertise throughout the implementation of the project.

References

1. Bourgeois MS, Schulz R, Burgio LD. Interventions for caregivers of patients with Alzheimer’s disease: a review and analysis of content, process, and outcomes. Int J Aging Hum Dev 1996;43:35-92.
2. Sörenson S, Pinquart M, Duberstein P. How effective are interventionswith caregivers? An updated meta-analysis. Gerontologist 2002;42:356-72.
3. Schulz R, O’Brien A, Czaja S, et al. Dementia caregiver research: in search of clinical significance. Gerontologist 2002;42:589-602.
4. Brennan P, Moore S, Smyth K. The effects of a special computer network on caregivers of persons with Alzheimer’s disease. Nursing Research 1995;44:166-72.
5. Payton FC, Brennan PF. How a community health information network is really used. Communications of the ACM 1999;42:85-9.
6. Schulz R, Burgio L, Burns R, et al. Resources for enhancing Alzheimer’s caregiver health (REACH): overview, site-specific outcomes, and future directions. Geronologist 2003;43:514-31.

 

Feisal A. Adatia, MD, MSc, First Year Ophthalmology Resident, University of Toronto, Toronto, ON.

The Internet has become the world's greatest information resource. Physicians have come to depend on sites such as MD Consult (www.mdconsult.com) and PubMed (www.pubmedcentral.org) for their clinical queries, and family physicians have found Family Practice Notebook (www.fpnotebook.com) to be a valuable resource. As well, journals such as the Canadian Medical Association Journal (www.ecmaj.ca) and Geriatrics & Aging (www.geriatricsandaging.ca) are available online to allow physicians to keep up with new developments in medicine.

With the SARS outbreak, the international community has used the Internet to share knowledge and information. The World Health Organization has responded to the threat of SARS by using its website to publish daily updates about the number of worldwide cases, thus allowing analysts to monitor the progress of this outbreak. In the U.S., the Centers for Disease Control and Prevention has posted dozens of fact sheets, travel advisories and a breakdown of domestic cases by state on its site.

Moreover, the Internet has become a trusted way to communicate, with e-mail having supplanted the use of the telephone in many regards. Given these changes, there is a great deal of excitement over new technologies that allow physicians to have the power of the Internet in a wireless device. Wireless systems also provide ways to share Internet connections and information between computers.

Bluetooth™ Wireless Technology
Bluetooth and Wireless Fidelity, or Wi-Fi, technologies are reshaping the way the Internet can be accessed. Bluetooth provides a means for devices to communicate with one another. This short-range technology allows for a wireless voice and data link between a broad range of devices, including desktops, notebooks, handheld computers, printers, mobile phones and digital cameras. Bluetooth creates a Wireless Personal Area Network (WPAN) consisting of all the Bluetooth-enabled electronic devices immediately surrounding a user, allowing these devices to communicate with one another. With this technology, desktop computers can send files to a printer, handhelds can synchronize with a notebook computer, one can surf the web via a mobile phone, and a wireless headset can be used to talk on a cell phone while driving. Physicians can use a Bluetooth-enabled notebook or handheld computer, such as the Palm Tungsten T, Sony TG50, iPAQ h5455 or Toshiba e740, to connect to the Internet via a Bluetooth-enabled cell phone, from companies such as Nokia, Motorola, Samsung and Sony Ericsson. However, to communicate, these devices need to be in close proximity, usually less than 10 metres.

Wireless Fidelity Technology
Wi-Fi technology allows one to develop a network, linking enabled devices through radio waves transmitted from a base station or access point. With this technology files can be shared between computers, and a single Internet connection can be shared by many computers. A larger range of approximately 100 metres allows this technology to become more feasible for broad access in public places.

It seems likely that many of us will adopt this technology, with mainstream pushes from suppliers such as Intel whose Pentium M chip, branded Centrino, includes Intel's Pro Wireless 2100 802.11b (Wi-Fi) module, expected to be included in 125 models of notebook computers by the end of this year. Palm's Tungsten C and certain HP iPAQ and Toshiba handhelds are currently Wi-Fi enabled. Intel is also teaming with Hilton Hotels and Resorts, Borders Group and McDonald's restaurants to offer wireless access to customers in certain areas. Mainstream Wi-Fi access is even available at Starbucks locations in the U.S., with 2,000 cafes expected to be wired for Wi-Fi by this year's end. AT&T and IBM have formed a company called Cometa Networks Inc. and plan to blanket the 50 largest U.S. metropolitan areas with public wireless access points, or "hot spots". Toshiba and Accenture also plan to have 10,000 hot spots across North America by the end of the year. In Canada, Toshiba has announced plans for a nationwide pay-per-use network of hot spots in more than 1,000 locations, including coffee chains, hotels and travel terminals. Bell Canada, Toronto-based Rogers Cable Inc. and Calgary's Shaw Cable Inc. also are expected to provide Wi-Fi access points, with Bell Canada having recently run a pilot project offering free wireless access at 19 public places in Montreal, Toronto, Kingston and Calgary.

In the health care setting, U.S. hospitals are using this technology to help provide working environments that will attract nursing staff. Internet Protocol (IP) wireless headset phones can use a Wi-Fi network to make and receive telephone calls. This allows nurses to answer doctors' pages on the spot, rather than having to hustle to a nursing station telephone. They can also use laptops or phones to update medical charts at bedsides. In fact, even north of Toronto at the Markham-Stouffville hospital, nurses use Wi-Fi-enabled laptops to feed information into the hospital's electronic documentation system from a patient's bedside. Although the employment of this technology is just beginning in the hospital environment, it is likely to become increasingly important in health care.

Technologies such as Wi-Fi are going mainstream and, perhaps more intriguingly, may revolutionize the accessibility of hospital staff and data access in our hospitals. In the future, wireless networks and everywhere access to the Internet may be a standard in clinical practice and in our homes.

Seniors Benefit from Being Online

David Patrick Ryan, PhD, C.Psych
Director of Education, Regional
Geriatric Program of Toronto,
Faculty of Medicine,
University of Toronto, Toronto, ON.

There is an interesting paradox at the heart of Internet use by seniors which is: Although seniors are under-represented among Internet users, when they do get online, they become its most frequent users. Only 16% of seniors use the Internet, compared to the national average of 44%. Yet, once online, Canadian seniors use the Internet, on average, for 12 hours weekly. This is more than the average for teenagers (7 hours) and 80 minutes more than for any other age group. Given the emerging realization that the Internet expands the world of seniors, particularly disabled seniors, at a time when it would otherwise be contracting, and the developing evidence that computers and the Internet can be powerful tools for maintaining health and well-being, it is imperative that an attempt be made to reduce the digital divide amongst seniors.¹

The Obstacles to Internet Use for Seniors
What are the obstacles to seniors' use of the Internet? Anxiety is one obstacle.

This article was reproduced from the CMAJ 1998;159 (6 Suppl), with permission of the Heart and Stroke Foundation of Ontario. Please visit the Heart and Stroke Foundation at www.hsfpe.org to view the complete Stroke: Costs, practices and the need for change supplement.

 

Internet Resources on Stroke
Heart and Stroke Foundation of Ontario:	www.hsfpe.org
Canadian Neuroscience Network:	www.cns.ucalgary.ca
American Academy of Neurology:	www.aan.com
Neurosurgery//On-Call:	www.aans.org
American Heart Association:	www.amhrt.org
American Medical Association:	www.ama-assn.org
National Stroke Association:	www.stroke.com
Neurosciences on the Internet:	www.neuroguide.com
The Journal of Neuroscience:	www.jneurosci.org
Stanford Stroke Center:	www.med.stanford.edu/school/stroke
Columbia University:	www.columbia.edu/~dwd2/
National Library of Medicine:	www.nlm.nih.gov