Surfacing the Voices of People with Dementia: Strategies for Effective Inclusion of Proxy Stakeholders in Qualitative Research

Document Title

Surfacing the Voices of People with Dementia: Strategies for Effective Inclusion of Proxy Stakeholders in Qualitative Research

Document Information

• Topic Area: Strategies for effective inclusion of dementia patients and proxy stakeholders in HCI research
• Keywords: Dementia, proxy, stakeholders, reflection, practical guidance

Research Background and Problem

• Identified Issues or Challenges:
  Dementia patients often face challenges in expressing themselves. Some studies have adopted designs and research methods involving proxies (e.g., family members or professionals), but the proxies' voices may overshadow the patients' genuine opinions. Furthermore, existing research rarely provides specific guidance on managing the roles and power dynamics of proxies.
• Significance:
  The authentic voices of dementia patients are crucial for designing adaptive technologies that enhance their quality of social life and uphold dignity and respect during the design process.
• Research Motivation and Related Work:
  Based on observations and interviews from the "Tales & Travels" community project, the authors reflect on the roles played by proxy stakeholders during interviews and their impact on patient expression. They aim to provide more specific practical guidelines.

Solution

• Proposed Methods or Solutions:

  1. The authors critically reflect on previously collected data and conduct an in-depth content analysis to explore better ways to manage proxy involvement.
  2. They propose a three-stage process with 12 specific guiding principles to help researchers effectively collaborate with proxies while ensuring dementia patients' voices are prioritized.

• Innovative Aspects:
  This study not only analyzes the role of proxies but also summarizes practical strategies to adjust research design in response to the complex dynamics of proxies. It provides specific strategies to prevent proxies from suppressing patients' voices.

• Implementation Steps and Techniques:

  1. Data Collection and Reflection:
     • Conduct secondary analysis of observation notes and interview records from the "Tales & Travels" project.
     • Use qualitative content analysis methods with a categorized coding framework to identify success and failure points.
  2. Proposing Practical Strategies:
     • Extract strategies for managing proxy roles and dynamics from the collected data.
     • Develop guidelines to enhance participant expression, such as cross-channel triangulation methods and multi-sensory probes.
  3. Three-Stage Process:
     • Preparation and Research Design: Building trust with the community, selecting appropriate proxy roles, and preparing multi-sensory tools.
     • Data Collection: Setting up flexible research environments, intervening to balance power dynamics, and paying close attention to non-verbal cues.
     • Data Analysis: Adding an extra analysis stage focused on power dynamics and triangulating information.

Research Outcomes

• Specific Results:

  1. Proposed 12 guiding principles across different stages, covering the process from preparation to data analysis.
  2. Summarized how proxies can assist when patients face expression limitations (e.g., providing calendars, prompt tools, etc.).
  3. Offered solutions for specific scenarios, such as addressing situations where proxies' expressions deviate from participants' opinions.

• Advantages:
  Compared to existing literature, the authors' work emphasizes guiding researchers on strategically managing proxy roles in dementia research while highlighting patients' voices. This helps make research designs more inclusive and diverse.

• Limitations and Future Directions:

  1. The study is based on a single project and limited context ("Tales & Travels"), and its applicability needs validation through research in diverse settings.
  2. Reflexive analysis may involve subjective bias from the authors; future studies should expand to collaborative research teams to enhance neutrality and breadth.
  3. Suggested testing the applicability of these guidelines in other cognitive or communication impairment domains (e.g., aphasia).

Conclusion

Through reflection and content analysis, this paper proposes practical strategies for collaborating with proxies in dementia research within the HCI field, emphasizing the importance of ensuring patients' voices are not overshadowed by proxies. By employing methods such as multi-channel triangulation, power dynamics analysis, and extended participation, this study lays a solid foundation for future research and invites further discussion.