Caring for others Pilot Study (Marziali)

Name of Intervention: Internet-based Video Conferencing Support Groups for Family Caregivers of Persons with Chronic Disease

Principal Investigator (s): Elsa Marziali

Institutional Affiliation: Baycrest & University of Toronto

Caregiver Intervention Description

1. Summary of Intervention

Caregivers meet online via a password-protected website (Caring for Others [CFM©]. The group meetings are facilitated by a health professional (e.g. nurse, social worker, occupational therapist). The group meets weekly for one hour for ten weeks. Subsequently, the group continues to meet as a self-help group technically facilitated by one of the group members. The group can ask the health professional to join the group as needed for consultation. The aim of the support group is to help caregivers deal with the emotional stress of caring for a family member with a chronic disease. Our approach is based on the theory that emotions form barriers to information processing. Consequently, caregivers have difficulty applying information about caregiving strategies to their individual situations with a resulting escalation in stress and burden. The group members form supportive bonds and identify readily with each others caregiving experiences. They benefit in terms of reduced stress and increased psychosocial support.

Studies of our Internet-based intervention for caregivers have shown a reduction in stress pre-post intervention when compared with caregivers who did not receive the intervention.

Key search terms:

psychosocial support group, caregivers, dementia, Parkinson, stroke, traumatic brain injury, internet video conferencing.

2. Intervention Materials

We have developed a password protected web site, information handbooks by disease type posted on the web site, an intervention training manual to insure reliable adherence to our model of intervention, a computer training manual focused onhelping participants to negotiate our web site. Our materials and web site are copyrighted and available through licensing.

Contact for more information: elsa.marziali@utoronto.ca

3. Implementing the Intervention

A training program is available through licensing of the web site and materials.

The cost of the web site license is based on amount of customization required. To implement the program the sponsoring organization would need to support training of one clinician, support a technician part time to assist participants (caregivers) with installation of software and training to access the web site. Also a server to support the web site use by participants and clinical staff would need to be provided (these usually are available through IT departments of most institutions)

Additional implementation information: To participate in the intervention program participants need to have access to computers, web cams, audio headsets and high speed internet service. During the research studies we supplied equipment to those who did not have access and trained those participants who had no experience using computers. However, increasingly we have found that most caregivers have some computer experience and most have high speed internet access.

4. For more information

See published papers:

Marziali, E. (2004). Virtual support group: Helping caregivers cope. Rehab and Community Care Medicine. 13, 36.

Marziali, E., Donahue, P., & Crossin, G. (2005). Computer-Internet Health Care Support Interventions for Family Caregivers of Persons with Dementia (Alzheimer or Other), Stroke, or Parkinson Disease. Families in Society, 86, 530-538.

Marziali, E. (2005). Virtual Support Groups for Family Caregivers of Persons with Dementia. Geriatrics and Aging, 8, 74.

Marziali, E., Damianakis, T., Donahue, P. (2006). Virtual support for family caregivers: theoretical framework, intervention model and outcome. Journal of Technology in Human Service, 24, 39-54.

Marziali, E. & Donahue, P. (2006). Caring for Others: Internet, video-conferencing group intervention for family caregivers of older adults with neurodegenerative disease. The Gerontologist, 46, 398-403.