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Internet-Based Caregiver Support for Chinese Canadians Taking Care of a Family Member with Alzheimer Disease and Related Dementia*

Published online by Cambridge University Press:  01 December 2009

Teresa Chiu ,
Elsa Marziali ,
Angela Colantonio ,
Anne Carswell ,
Marilyn Gruneir ,
Mary Tang  and
Gunther Eysenbach
Teresa Chiu*
Affiliation:
COTA Health Hong Kong Polytechnic University
Elsa Marziali
Affiliation:
Baycrest Rotman Research Institute Faculties of Medicine and Social Work, University of Toronto
Angela Colantonio
Affiliation:
Department of Occupational Science and Occupational Therapy, University of Toronto Toronto Rehabilitation Institute
Anne Carswell
Affiliation:
School of Occupational Therapy, Dalhousie University
Marilyn Gruneir
Affiliation:
COTA Health
Mary Tang
Affiliation:
COTA Health
Gunther Eysenbach
Affiliation:
Department of Health Policy, Management, and Evaluation, University of Toronto Centre for Global eHealth Innovation, University Health Network, Toronto
*
†Correspondence and requests for offprints should be sent to / La correspondance et les demandes de tirés-à-part doivent être adressées à : Teresa Chiu, Ph.D. Department of Rehabilitation Sciences The Hong Kong Polytechnic University Hung Hom Kowloon Hong Kong China (teresa.ml.chiu@inet.polyu.edu.hk)
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Abstract

The aim of this study was to assess the usability of a new Internet-based Caregiver Support Service (ICSS) and evaluate its effects on health outcomes of Chinese Canadians who cared for a family member with dementia. Demographic and questionnaire data were collected from 28 participants, and in-depth interviews were conducted with 10 participants. Results showed that non-users reported higher levels of burden post-intervetion, and frequent users showed post-intervention reduction in experienced burden. Traditional beliefs shaped caregivers’ needs; also, ethno-cultural-linguistic contexts affected system usability and were associated with usage behaviour. This study indicates that caregivers can benefit from receiving professional support via asynchronous e-mails and a dedicated information web site. The ICSS is a feasible approach for supporting caregivers who prefer an alternative service model. This emerging service requires more research in: enhanced technology design, service delivery models for immigrant caregivers, and evaluation of effectiveness and cost-effectiveness.

Résumé

L’objectif de cette étude était d’évaluer la facilité d’utilisation d’un nouveau service de soutien pour personnel soignant basé sur Internet (ICSS) et d’évaluer ses effets sur la santé des Canadiens chinois qui ont soigné un membre de la famille atteinte de démence. Les données démogaphiques et de questionnaire ont été recueillies auprès de 28 participants, et des entrevues approfondies ont été realisées avec 10 participants. Les résultats ont démontré que ceux qui n’ont pas participé à ICSS ont revelé plus hauts niveaux de charge après l’intervention, lors que les participants fréquents a montré une réduction en charge après l’intervention. Les croyances traditionelles ont formées les besoins des soignants; de plus, les contextes ethnoculturelle-linquistiques ont touchées la facilité d’utilisation et ont été associées au comportement pendant l’utilisation. De même, l’utilisation d’ICSS a été influencée par la compétence informatique et par préferences linguistiques. Cette étude indique que les soignants peuvent bénéficier du soutien professionnel par e-mails asynchrones et un site Web dedié d’informations. L’ICSS est une approche possible pour soutenir les soignants qui préferent un modèle de service alternative. Ce service emergent nécessite plus de la recherche sur: la conception technologique amélioré, les modèles de prestation de services pour les immigrants soignants et l’évaluation de l’efficacité et rentabilité.

Keywords

aide familialeergothérapieinformatiquemultilinquismerésultatsservice socialfamily caregiversclinical informaticsmultilingualismoccupational therapysocial worktreatment outcome
Type
Articles
Information
Canadian Journal on Aging / La Revue canadienne du vieillissement , Volume 28 , Issue 4 , December 2009 , pp. 323 - 336
Copyright
Copyright © Canadian Association on Gerontology 2009

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Footnotes

*

The study team would like to acknowledge the important contributions by the following people and organizations that made this study possible: Alzheimer Society of Canada, CIHR Fellowship, and Toronto Rehabilitation Institute Foundation; K.Y. Liu, Maria Choi, and Maria Chu of Yee Hong Center for Geriatric Care; family members who participated in the study; Rosana Chan and Crystal Tse who provided the online service; Andrew Bartle and Danielle Lottridge for usability and software engineering support; Xiaohong Song, William Wang, and Jason Yu for translation support; and Zahid Naseer for data analysis support.

References

Bass, D.M., McClendon, M.J., Brennan, P.F., & McCarthy, C. (1998). The buffering effect of a computer support network on caregiver strain. Journal of Aging and Health, 10, 20–43.CrossRefGoogle ScholarPubMed
Belle, S.H., Burgio, L., Burns, R., Coon, D., Czaja, S., Gallagher-Thompson, D., et al. (2006). Enhancing the quality of life of dementia caregivers from different ethnic or racial groups. Annals of Internal Medicine, 145, 727–738.Google Scholar
Brennan, P.F., Moore, S., & Smyth, K. (1995). The effects of a special computer network on caregivers of persons with Alzheimer’s disease. Nursing Research, 44, 166–172.CrossRefGoogle ScholarPubMed
Brinck, T., Gergle, D., & Wood, S.D. (2002). Usability for the Web: Designing Web sites that work. San Francisco, CA: Morgan Kaufmann.Google Scholar
Burns, A., & Rabins, P. (2000). Carer burden in dementia. International Journal of Geriatric Psychiatry, 15(Suppl. 1).S9–S13.Google Scholar
Charmaz, K. (2005). Grounded theory in the 21st century. In Denzin, N.K. & Lincoln, Y.S. (Eds.), The SAGE handbook of qualitative research (3rd ed., pp. 507–536). Thousand Oaks, CA: Sage.Google Scholar
Chiu, T., & Henderson, J. (2005). Developing internet-based occupational therapy services. American Journal of Occupational Therapy, 59, 626–630.Google Scholar
Chiu, T., & Lottridge, D. (2005a). The language of information exchange for Chinese-English caregivers: a preliminary evaluation of preferences and barriers. Paper presented at the eHealth Conference: Realizing the Vision, Apr 30–May 3, 2005, Toronto, Ontario.Google Scholar
Chiu, T., & Lottridge, D. (2005b). Development and Iterative Refinement of an Internet-based Service for Chinese Family Caregivers of People with Alzheimer Disease. Paper presented at the AMIA Conference, Oct 22–26, 2005, Washington, DC.Google Scholar
Chiu, T., Marziali, E., Tang, M., Colantonio, A., Carswell, A., Eysenbach, G., et al. (2008). How do family caregivers and occupational therapists interact via emails? Paper presented at the 2008 International Occupational Therapy Conference. Guangzhou, ChinaGoogle Scholar
Chui, T., Tran, K., & Flanders, J. (2005). Chinese Canadians: Enriching the cultural mosaic. Canadian Social Trends, 76, 24–33.Google Scholar
Cohen, C.A., Colantonio, A., & Vernich, L. (2002). Positive aspects of caregiving: Rounding out the caregiver experience. International Journal of Geriatric Psychiatry, 17, 184–188.CrossRefGoogle ScholarPubMed
Colantonio, A., Cohen, C., & Corlett, S. (1998). Support needs of elderly caregivers of persons with dementia. Canadian Journal of Aging, 17, 330–345.CrossRefGoogle Scholar
Colantonio, A., Cohen, C., & Pon, M. (2001). Assessing support needs of caregivers of persons with dementia: Who wants what? Community Mental Health Journal, 37, 231–234.Google Scholar
Connell, C.M., & Gibson, G.D. (1997). Racial, ethnic, and cultural differences in dementia caregiving: Review and analysis. The Gerontologist, 37, 355–364.Google Scholar
Czaja, S.J., & Rubert, M.P. (2005) Telecommunications technology as an aid to family caregivers of persons with dementia. Psychosomatic Medicine, 64, 469–476.CrossRefGoogle Scholar
Eisdorfer, C., Czaja, S.J., Loewenstein, D.A., Rubert, M.P., Arguelles, S., Mitrani, V.B., et al. (2003). The effect of a family therapy and technology-based intervention on caregiver depression. The Gerontologist, 43, 521–531.CrossRefGoogle ScholarPubMed
Finkel, S., Czaja, S.J., Schulz, R., Martinovich, Z., Harris, C., Pezzuto, D. (2007). E-care: A telecommunications technology intervention for family caregivers of dementia patients. American journal of geriatric psychiatry: Official Journal of the American Association for Geriatric Psychiatry, 15, 443–448.CrossRefGoogle ScholarPubMed
Fuh, J.L., Liu, C.Y., Wang, S.J., Wang, H.C., & Liu, H.C. (1999). Revised memory and behavior problems checklist in Taiwanese patients with Alzheimer’s disease. International Psychogeriatrics, 11, 181–189.CrossRefGoogle ScholarPubMed
Galinsky, M.J., Schopler, J.H., & Abell, M.D. (1997). Connecting group members through telephone and computer groups. Health and Social Work, 22, 181–188.CrossRefGoogle ScholarPubMed
Glueckauf, R.L., Ketterson, T.U., Loomis, J.S., & Dages, P. (2004). Online support and education for dementia caregivers: Overview, utilization, and initial program evaluation. Telemedicine Journal and e-Health: The Official Journal of the American Telemedicine Association, 10, 223–232.CrossRefGoogle ScholarPubMed
Gräsel, E. (1995). Somatic symptoms and caregiving strain among family caregivers of older patients with progressive nursing needs. Archives of Gerontology and Geriatrics, 21, 253–266.Google Scholar
Gräsel, E., Chiu, T., & Oliver, R. (2003). Development and validation of the Burden Scale for Family Caregivers. Toronto, Ontario, Canada: COTA Comprehensive Rehabilitation and Mental Health Services.Google Scholar
Haley, W.E., Han, B., & Henderson, J.N. (1998). Aging and ethnicity: Issues for clinical practice. Journal of Clinical Psychology in Medical Settings, 5, 393–409.CrossRefGoogle Scholar
Ho, B., Friedland, J., Rappolt, S., & Noh, S. (2003). Caregiving for relatives with Alzheimer’s disease: Feelings of Chinese-Canadian women. Journal of Aging Studies, 17, 301–321.Google Scholar
Ikels, C. (2002). Constructing and deconstructing the self: Dementia in China. Journal of Cross Cultural Gerontology, 17, 233–251.Google Scholar
Janevic, M.R., & Connell, C.M. (2001). Racial, ethnic, and cultural differences in the dementia caregiving experience: Recent findings. The Gerontologist, 41, 334–347.CrossRefGoogle ScholarPubMed
Lai, D.W.L., & Chau, S.B.Y. (2007). Predictors of health service barriers for older Chinese immigrants in Canada. Health and Social Work, 32, 57–65.CrossRefGoogle ScholarPubMed
Mahoney, D.F., Tarlow, B.J., & Jones, R.N. (2003). Effects of an automated telephone support system on caregiver burden and anxiety: Findings from the REACH for TLC intervention study. Gerontologist, 43(4), 556–567.Google Scholar
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.Google Scholar
Marziali, E., Donahue, P., & Crossin, G. (2005). Caring for others: Internet health care support intervention for family caregivers of persons with Alzheimer’s, stroke, or Parkinson’s disease. Families in Society, 86, 375–383.CrossRefGoogle Scholar
National Institute on Aging. (2001). New checklist shows how to make Web sites senior friendly. Retrieved July 13, 2002, from http://www.nia.nih.gov/news/pr/2001/0222.htmGoogle Scholar
Older Americans Resources and Services. (1978). Multidimensional functional assessment: The OARS methodology. A manual. Durham, NC: Duke University, Center for the Study of Aging and Human Development.Google Scholar
Pang, F.C., Chow, T.W., Cummings, J.L., Leung, V.P.Y., Chiu, H.F.K., Lam, L.C.W., et al. (2002). Effect of neuropsychiatric symptoms of Alzheimer’s disease on Chinese and American caregivers. International Journal of Geriatric Psychiatry, 17, 29–34.CrossRefGoogle ScholarPubMed
Patterson, T.L., Semple, S.J., Shaw, W.S., Yu, E., He, Y., Zhang, M.Y., et al. (1998). The cultural context of caregiving: A comparison of Alzheimer’s caregivers in Shanghai, China and San Diego, California. Psychological Medicine, 28, 1071–1084.Google Scholar
Patton, M.Q. (1990). Qualitative evaluation and research methods (2nd ed.). Newbury Park, CA: Sage Publications.Google Scholar
Powell, J., Chiu, T., & Eysenbach, E. (2008). Networked technologies supporting carers of people with dementia: Systematic review. Journal of Telemedicine and Telecare, 14, 154–156.Google Scholar
Radloff, L.S. (1977). The CES-D scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 385–401.CrossRefGoogle Scholar
Rankin, S.H., Galbraith, M.E., & Johnson, S. (1993). Reliability and validity data for a Chinese translation of the Center for Epidemiological Studies-Depression. Psychological Reports, 73(Pt. 2), 1291–1298.CrossRefGoogle ScholarPubMed
Schulz, R., Burgio, L., Burns, R., Eisdorfer, C., Gallagher-Thompson, D., Gitlin, L.N., et al. (2003). Resources for Enhancing Alzheimer’s Caregiver Health (REACH): overview, site-specific outcomes, and future directions. Gerontologist, 43(4), 513–520.Google Scholar
Sörensen, S., Pinquart, M., & Duberstein, P. (2002). How effective are interventions with caregivers? An updated meta-analysis. The Gerontologist, 42, 356–372.CrossRefGoogle ScholarPubMed
Strauss, A.L., & Corbin, J.M. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory (2nd ed.). Thousand Oaks, CA: Sage Publications.Google Scholar
Teri, L., Truax, P., Logsdon, R., Uomoto, J., Zarit, S., & Vitaliano, P.P. (1992). Assessment of behavioral problems in dementia: The revised memory and behavior problems checklist. Psychology and Aging, 7, 622–631.Google Scholar
White, M.H., Dorman, S.M., Mahoney, D.F., Tarlow, B., & Sandaire, J. (2000). Online support for caregivers. Analysis of an Internet Alzheimer mail group: A computer-mediated intervention for Alzheimer’s caregivers. Computers in Nursing, 18, 168–176.Google Scholar
Yu, E.S.H., Kean, Y.M., Slymen, D.J., Liu, W.T., Zhang, M., & Katzman, R. (1998). Self-perceived health and 5-year mortality risks among the elderly in Shanghai, China. American Journal of Epidemiology, 147, 880–890.CrossRefGoogle ScholarPubMed
Zhang, J., & Norvilitis, J.M. (2002). Measuring Chinese psychological well-being with western developed instruments. Journal of Personality Assessment, 79, 492–511.CrossRefGoogle ScholarPubMed
Zimet, G.D., Dahlem, N.W., Zimet, S.G., & Farley, G.K. (1988). The multidimensional scale of perceived social support. Journal of Personality Assessment, 52, 30–41.Google Scholar