389
Views
6
CrossRef citations to date
0
Altmetric
Articles

An Investigation of the Interaction Patterns of Peer Patrons on an Online Peer-Support Portal for Informal Caregivers of Alzheimer’s Patients

ORCID Icon, , , &
Pages 313-342 | Received 28 Aug 2019, Accepted 16 Oct 2019, Published online: 02 Dec 2019

References

  • ALZConnected. 2014. Alzconnected.org. Accessed February 19 2019. https://www.alzconnected.org/.
  • Alzheimer’s Association. 2018. “2018 Alzheimer's Disease Facts and Figures.” Alzheimers Dement 14 (3):367–429.
  • Andrén, S., and S. Elmståhl. 2005. “Family Caregivers' Subjective Experiences of Satisfaction in Dementia Care: Aspects of Burden, Subjective Health and Sense of Coherence.” Scandinavian Journal of Caring Sciences 19 (2):157–68.
  • ATLAS.ti. 1993. The Qualitative Data Analysis & Research Software.
  • Bane, C. M. H., C. M. B. Haymaker, and J. Zinchuk. 2007. “Social Support as a Moderator of the Big-Fish-in-a-Little-Pond Effect in Online Self-Help Support Groups 1.” Journal of Applied Biobehavioral Research 10 (4):239–61.
  • Bank, A. L., S. Argüelles, M. Rubert, C. Eisdorfer, and S. J. Czaja. 2006. “The Value of Telephone Support Groups among Ethnically Diverse Caregivers of Persons with Dementia.” The Gerontologist 46 (1):134–38.
  • Barak, A., M. Boniel-Nissim, and J. Suler. 2008. “Fostering Empowerment in Online Support Groups.” Computers in Human Behavior 24 (5):1867–83.
  • Belle, S. H., Burgio, L., Burns, R., et al. 2006. “Enhancing the Quality of Life of Dementia Caregivers from Different Ethnic or Racial Groups: A Randomized, Controlled Trial.” Annals of Internal Medicine 145 (10):727–38.
  • Birks, M., Y. Chapman, and K. Francis. 2008. “Memoing in Qualitative Research: Probing Data and Processes.” Journal of Research in Nursing 13 (1):68–75.
  • Boyatzis, R. E. 1998. Transforming Qualitative Information: Thematic Analysis and Code Development. Thousand Oaks, CA: Sage.
  • Braun, V., and V. Clarke. 2006. “Using Thematic Analysis in Psychology.” Qualitative Research in Psychology 3 (2):77–101.
  • Campbell, H. S., M. R. Phaneuf, and K. Deane. 2004. “Cancer Peer Support Programs—Do They Work?.” Patient Education and Counseling 55 (1):3–15.
  • Campbell, J. L., C. Quincy, J. Osserman, and O. K. Pedersen. 2013. “Coding in-Depth Semistructured Interviews: Problems of Unitization and Intercoder Reliability and Agreement.” Sociological Methods and Research 42 (3):294–320.
  • Carretero, S., J. Garcés, F. Ródenas, and V. Sanjosé. 2009. “The Informal Caregiver’s Burden of Dependent People: Theory and Empirical Review.” Archives of Gerontology and Geriatrics 49 (1):74–79.
  • Centola, D. 2010. “The Spread of Behavior in an Online Social Network Experiment.” Science 329 (5996):1194–97.
  • Cheung, W. S., K. F. Hew, and C. S. L. Ng. 2008. “Toward an Understanding of Why Students Contribute in Asynchronous Online Discussions.” Journal of Educational Computing Research 38 (1):29–50.
  • Chien, Ling-Yu, Hsin Chu, Jong-Long Guo, et al. 2011. “Caregiver Support Groups in Patients with Dementia: A Meta-Analysis.” International Journal of Geriatric Psychiatry 26 (10):1089–98.
  • Christakis, N. A., and J. H. Fowler. 2007. “The Spread of Obesity in a Large Social Network over 32 Years.” New England Journal of Medicine 357 (4):370–79.
  • Committee on Family Caregiving for Older Adults. 2016. Families Caring for an Aging America. Washington, DC: National Academies of Sciences, Engineering, and Medicine.
  • Coulson, N. S. 2005. “Receiving Social Support Online: An Analysis of a Computer-Mediated Support Group for Individuals Living with Irritable Bowel Syndrome.” Cyberpsychology and Behavior 8 (6):580–84.
  • Cuijpers, P. 2005. “Depressive Disorders in Caregivers of Dementia Patients: A Systematic Review.” Aging and Mental Health 9 (4):325–30.
  • Czaja, S. J., and M. P. Rubert. 2002. “Telecommunications Technology as an Aid to Family Caregivers of Persons with Dementia.” Psychosomatic Medicine 64 (3):469–76.
  • Dam, A. E. H., M. E. de Vugt, M. P. J. van Boxtel, and F. R. J. Verhey. 2017. “Effectiveness of an Online Social Support Intervention for Caregivers of People with Dementia: The Study Protocol of a Randomised Controlled Trial.” Trials 18 (1):395.
  • Dam, A. E. H., M. P. J. van Boxtel, N. Rozendaal, F. R. J. Verhey, and M. E. de Vugt. 2017. “Development and Feasibility of Inlife: A Pilot Study of an Online Social Support Intervention for Informal Caregivers of People with Dementia.” PLoS One 12 (9):e0183386.
  • Eysenbach, G., J. Powell, M. Englesakis, C. Rizo, and A. Stern. 2004. “Health Related Virtual Communities and Electronic Support Groups: Systematic Review of the Effects of Online Peer to Peer Interactions.” BMJ 328 (7449):1166.
  • Folkman, S., R. S. Lazarus, R. J. Gruen, and A. DeLongis. 1986. “Appraisal, Coping, Health Status, and Psychological Symptoms.” Journal of Personality and Social Psychology 50 (3):571–79.
  • Fowler, J. H., and N. A. Christakis. 2008. “Dynamic Spread of Happiness in a Large Social Network: Longitudinal Analysis over 20 Years in the Framingham Heart Study.” BMJ 337 (Dec04 2):a2338.
  • Fox, S. 2011. The Social Life of Health Information. Washington, DC: Pew Internet and American Life Project.
  • Fox, S. 2013. “After Dr Google: Peer-to-Peer Health Care.” Pediatrics 131 (Supplement):S224–25.
  • Gallienne, R. L., S. M. Moore, and P. F. Brennan. 1993. “Alzheimer’s Caregivers. Psychosocial Support via Computer Networks.” Journal of Gerontological Nursing 19 (12):15–22.
  • Haley, W. E., E. G. Levine, S. L. Brown, and A. A. Bartolucci. 1987. “Stress, Appraisal, Coping, and Social Support as Predictors of Adaptational Outcome among Dementia Caregivers.” Psychology and Aging 2 (4):323–30.
  • Hoefman, R. J., J. van Exel, and W. B. F. Brouwer. 2013. “Measuring the Impact of Caregiving on Informal Carers: A Construct Validation Study of the CarerQol Instrument.” Health and Quality of Life Outcomes 11 (1):173.
  • Hruschka, Daniel J., Deborah Schwartz, Daphne Cobb St. John, et al. 2004. “Reliability in Coding Open-Ended Data: Lessons Learned from HIV Behavioral Research.” Field Methods 16 (3):307–31.
  • Hupcey, J. E. 1998. “Clarifying the Social Support Theory-Research Linkage.” Journal of Advanced Nursing 27 (6):1231–41.
  • Joffe, H., and L. Yardley. 2004. “Content and Thematic Analysis.” Research Methods for Clinical and Health Psychology 56:68.
  • Khanassov, V., I. Vedel, and P. Pluye. 2014. “Case Management for Dementia in Primary Health Care: A Systematic Mixed Studies Review Based on the Diffusion of Innovation Model.” Clinical Interventions in Aging 9:915–28.
  • LaMascus, A. M., M. A. Bernard, P. Barry, J. Salerno, and J. Weiss. 2005. “Bridging the Workforce Gap for Our Aging Society: How to Increase and Improve Knowledge and Training. Report of an Expert Panel.” Journal of the American Geriatrics Society 53 (2):343–47.
  • Madathil, K. C., A. J. Rivera-Rodriguez, J. S. Greenstein, and A. K. Gramopadhye. 2015. “Healthcare Information on YouTube: A Systematic Review.” Health Informatics Journal 21 (3):173–94.
  • McKhann, Guy M., David S. Knopman, Howard Chertkow, et al. 2011. “The Diagnosis of Dementia Due to Alzheimer’s Disease: Recommendations from the National Institute on Aging-Alzheimer’s Association Workgroups on Diagnostic Guidelines for Alzheimer’s Disease.” Alzheimer's and Dementia 7 (3):263–69.
  • Mo, P. K. H., and N. S. Coulson. 2008. “Exploring the Communication of Social Support within Virtual Communities: A Content Analysis of Messages Posted to an Online HIV/AIDS Support Group.” Cyberpsychology and Behavior 11 (3):371–74.
  • Narasimha, Shraddhaa, Kapil Chalil Madathil, Sruthy Agnisarman, et al. 2017. “Designing Telemedicine Systems for Geriatric Patients: A Review of the Usability Studies.” Telemedicine Journal and E-Health 23 (6):459–72.
  • National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press.
  • Nonaka, L., H. Takeuchi, and K. Umemoto. 1996. “A Theory of Organizational Knowledge Creation.” The International Journal of Technology Management 11:833–45.
  • OSF. 2019. Accessed 28th August. https://osf.io/.
  • Padgett, D. K. 2011. Qualitative and Mixed Methods in Public Health. Thousand Oaks, CA: SAGE Publications.
  • Parikh, M. 2001. “Knowledge Management Framework for High-Tech Research and Development.” Engineering Management Journal 13 (3):27–34.
  • Pinquart, M., and S. Sörensen. 2006. “Helping Caregivers of Persons with Dementia: Which Interventions Work and How Large Are Their Effects?.” International Psychogeriatrics 18 (4):577–95.
  • Pleasant, M. L., V. Molinari, J. V. Hobday, et al. 2017. “An Evaluation of the CARES® Dementia Basics Program among Caregivers.” International Psychogeriatrics 29 (1):45–56.
  • Polanyi, M. 1966. “The Logic of Tacit Inference.” Philosophy 41 (155):1–18.
  • Raban, D., and F. Harper. 2008. “Motivations for Answering Questions Online.” New Media and Innovative Technologies 73.
  • Roberts, J. 2000. “From Know-How to Show-How? Questioning the Role of Information and Communication Technologies in Knowledge Transfer.” Technology Analysis and Strategic Management 12:429–43.
  • Saldaña, J. 2009. “An Introduction to Codes and Coding.” The Coding Manual for Qualitative Researchers 3.
  • Salfi, J., J. Ploeg, and M. E. Black. 2005. “Seeking to Understand Telephone Support for Dementia Caregivers.” Western Journal of Nursing Research 27 (6):701–21.
  • Scharett, Emma, Kapil Chalil Madathil, Snehal Lopes, et al. 2017. “An Investigation of the Information Sought by Caregivers of Alzheimer’s Patients on Online Peer Support Groups.” Cyberpsychology, Behavior, and Social Networking 20 (10):640–57.
  • Schulz, R., Eden, J., & National Academies of Sciences, Engineering, and Medicine and others. 2016. “Programs and supports for family caregivers of older adults.” In Families Caring for an Aging America. Washington, DC: National Academies Press (US).
  • Schüz, B., A. Czerniawski, N. Davie, et al. 2015. “Leisure Time Activities and Mental Health in Informal Dementia Caregivers.” Applied Psychology: Health and Well-Being 7 (2):230–48.
  • Shinosaki, K., T. Nishikawa, and M. Takeda. 2000. “Neurobiological Basis of Behavioral and Psychological Symptoms in Dementia of the Alzheimer Type.” Psychiatry and Clinical Neurosciences 54 (6):611–20.
  • Sillence, E., C. Hardy, and P. Briggs. 2013. “Why Don’t We Trust Health Websites that Help Us Help Each Other?: An Analysis of Online Peer-to-Peer Healthcare.” Proceedings of the 5th Annual ACM Web Science Conference 396–404, ACM, New York, NY.
  • Sillence, E., C. Hardy, P. R. Harris, and P. Briggs. 2014. “Modeling Patient Engagement in Peer-to-peer Healthcare.” Proceedings of the 23rd International Conference on World Wide Web 481–486, ACM, New York, NY.
  • Sørensen, L. V., F. B. Waldorff, and G. Waldemar. 2008. “Early Counselling and Support for Patients with Mild Alzheimer’s Disease and Their Caregivers: A Qualitative Study on Outcome.” Aging and Mental Health 12 (4):444–50.
  • Spender, J. C. 1993. “Competitive Advantage from Tacit Knowledge? Unpacking the Concept and Its Strategic Implications.” Academy of Management Proceedings 1993 (1):37–41.
  • Stages of Alzheimer’s. 2018. “Alzheimer’s Disease and Dementia.” Accessed August 30. https://www.alz.org/alzheimers-dementia/stages.
  • Starkstein, S. E., R. Jorge, R. Mizrahi, and R. G. Robinson. 2006. “A Diagnostic Formulation for Anosognosia in Alzheimer’s Disease.” Journal of Neurology, Neurosurgery, and Psychiatry 77 (6):719–25.
  • Stone, R. 2007. “Introduction: The Role of Training and Education in Solving the Direct Care Workforce Crisis.” Gerontology and Geriatrics Education 28 (2):5–16.
  • Strauss, A., and J. Corbin. 1990. Basics of Qualitative Research. Thousand Oaks: Sage publications
  • Tausczik, Y. R., and J. W. Pennebaker. 2010. “The Psychological Meaning of Words: LIWC and Computerized Text Analysis Methods.” Journal of Language and Social Psychology 29 (1):24–54.
  • Thalhauser, C. J., and N. L. Komarova. 2012. “Alzheimer’s Disease: Rapid and Slow Progression.” Journal of the Royal Society Interface 9 (66):119–26.
  • Thomas, D. R. 2006. “A General Inductive Approach for Analyzing Qualitative Evaluation Data.” American Journal of Evaluation 27 (2):237–46.
  • Tonsaker, T., S. Law, I. Ormel, C. Nease, and G. Bartlett. 2017. “Engaging Caregivers: Exploring Perspectives on Web-Based Health Information.” Family Practice 34 (4):479–84.
  • Valente, T. W., and P. Pumpuang. 2007. “Identifying Opinion Leaders to Promote Behavior Change.” Health Education and Behavior 34 (6):881–96.
  • Van Mierlo, L. D., F. J. M. Meiland, H. G. Van der Roest, and R.-M. Dröes. 2012. “Personalised Caregiver Support: Effectiveness of Psychosocial Interventions in Subgroups of Caregivers of People with Dementia.” International Journal of Geriatric Psychiatry 27 (1):1–14.
  • Volicer, L., D. G. Harper, B. C. Manning, R. Goldstein, and A. Satlin. 2001. “Sundowning and Circadian Rhythms in Alzheimer’s Disease.” American Journal of Psychiatry 158 (5):704–11.
  • Wilcox, K., and A. T. Stephen. 2013. “Are Close Friends the Enemy? Online Social Networks, Self-Esteem, and Self-Control.” Journal of Consumer Research 40 (1):90–103.
  • Wills, T. A., and O. Shinar. 2000. “Measuring Perceived and Received Social Support.” Social Support Measurement and Intervention: A Guide for Health and Social Scientists 4:86–135.
  • World Health Organization and Alzheimer’s Disease International. 2012. Dementia: A Public Health Priority. Geneva, Switzerland: World Health Organization.
  • World Health Organization. 2017. Global Action Plan on the Public Health Response To Dementia 2017–2025. Geneva: World Health Organization.
  • Wyatt, J. C. 2001. “Management of Explicit and Tacit Knowledge.” Journal of the Royal Society of Medicine 94 (1):6–9.
  • Zhao, K., J. Yen, G. Greer, B. Qiu, P. Mitra, and K. Portier. 2014. “Finding Influential Users of Online Health Communities: A New Metric Based on Sentiment Influence.” Journal of the American Medical Informatics Association 21 (e2):e212–18.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.