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

Abstract

Online peer support portals are an effective way for informal caregivers to obtain support from the comfort of their homes. Having realized a dearth of research focusing on users of healthcare peer-support portals, this study focused on top contributors, termed as ‘peer patrons’, on one such portal. In order to understand their contribution in helping caregivers cope with their situation and to investigate any unique patterns of interaction, a qualitative thematic analysis was carried out on 1405 openly available comments on an online peer support group for informal caregivers of Alzheimer’s patients. The analysis revealed five themes related to content of peer patrons’ interaction with other portal members - Advice provider, information source, shoulder to cry on, portal star, and caregiver advocate. An additional theme related to the structure of the responses by peer patrons was also uncovered. In order to explain their contribution to these portals, parallels were drawn between the Stress and Coping model as applied to Dementia caregivers to show that peer patrons may be contributing towards caregivers’ coping mechanisms.

KEYWORDS:

• Alzheimer’s disease
• content analysis
• informal caregivers
• online peer-support portals
• peer-to-peer healthcare

Acknowledgement

The first author was involved in the idea conception, study design, data analysis, manuscript-creation and editing. The second author was involved in data analysis and manuscript review. The third author was involved in data analysis and the final author was involved in manuscript review and in providing research guidance throughout the study duration.

The authors would like to acknowledge the Alzheimer’s Association and the ALZConnected.org portal. Our gratitude to Dr. Sarah Griffin for her support in guiding us through the qualitative data analysis. We would also like to acknowledge Prateek Sreedhar Bharadwaj and Bala Vineeth Netha Tatipamula who helped with data scraping.

Additional information

Notes on contributors

Shraddhaa Narasimha

Shraddhaa Narasimha is a PhD candidate in Industrial Engineering at Clemson University. Her research spans across telemedicine systems, Virtual Reality, and online social networks with a focus on understanding collaboration, impression formation and use of these systems. Her expertise lies in designing and developing user centered systems and products, and the application of human factors principles to evaluate human interaction with existing and new-age technology.

Mackenzie Wilson

Mackenzie Wilson is undergraduate researcher at Clemson University and recently graduated with an undergraduate degree in Industrial Engineering. She was a recipient of the NSF-Research Experience for Undergraduates (REU) program.

Emma Dixon

Emma Dixon is a PhD student in the College of Information Studies at the University of Maryland, College Park. Her research focuses on the use of User Centered Design procedure to design technology to cater to progressive Dementia patients.

Nicole Davis

Nicole Davis is an Assistant Professor and board-certified Adult and Gerontological Nurse Practitioner. Her areas of interest are in urinary incontinence, chronic illness management, the needs of the aging, and the use of health information technology to support family caregivers. Nicole has worked on several NIH and VA-funded, multi-site studies as part of the urinary incontinence clinical and research program, through the Birmingham/Atlanta Geriatrics, Research, Education and Clinical Center at the Atlanta VA Medical Center.

Kapil Chalil Madathil

Kapil Chalil Madathil is an Assistant Professor of Civil and Industrial Engineering at Clemson University. His research covers the entire spectrum of system design; from identifying user needs to designing and developing systems that inform and motivate user behavior and empirically evaluate the efficacy of these interventions. He has specific expertise in the areas of human factors and system design and is currently active in the application of these principles to healthcare domain.