Investigating Daily Practices of Self-care to Inform the Design of Supportive Health Technologies for Living and Ageing Well with HIV

Title of the Paper

Investigating Everyday Self-Care Practices to Design Health Technologies Supporting Life and Aging with HIV

Paper Information

• Subject Areas: Human-Computer Interaction (HCI), Health Informatics, Chronic Condition Management, Self-Care Technology Design
• Keywords: Self-care, Personal Health Informatics, Chronic Conditions, Diary Study, Reflection, Human-Computer Interaction

Research Background and Issues

• Identified Problems or Challenges:

  • Current digital health tools fail to meet the complex needs of individuals with chronic conditions (LTC), especially marginalized groups, lacking solutions designed based on users' everyday experiences.
  • People living with HIV need to self-manage their condition, medication adherence, and contend with psychological and social barriers such as stigma and isolation.
  • Existing health technology designs often lean towards "medicalization," neglecting the everyday dimensions of self-care.

• Importance of the Research:

  • In the UK, 98% of people living with HIV are on treatment, and 97% have undetectable viral loads, demonstrating that self-management of medication is crucial for maintaining quality of life (QoL).
  • During the pandemic, the deployment of telehealth and social isolation has created more complex barriers to health management and self-care for people living with HIV, highlighting the urgent need for better-designed health technologies.

• Motivation and Related Work:

  • Existing mHealth applications primarily focus on medication adherence but fail to support emotional care, reflective data analysis, and social acceptability.
  • Many studies have called for better ways to support patients' everyday self-care practices and technology use, but research specific to HIV remains limited.

Solution

• Proposed Methods or Solutions:

  • This study investigates the everyday self-care practices of seven HIV patients in the UK using a diary method, exploring their daily health behaviors, reflective processes, and data-sharing intentions.
  • A customized paper diary was designed, inviting participants to record daily self-care activities, and a longitudinal study was conducted over 12 months.

• Innovative Aspects:

  • Focuses on the everyday and emotional dimensions of self-care, moving beyond traditional medicalized approaches centered on medication adherence.
  • Explores the reflective advantages of paper-based tools and the integration of digital and non-digital resources.

• Implementation Steps and Techniques:

  1. Design a structured paper diary with daily and weekly prompts and visual trackers (mood, energy, sleep, and weather).
  2. Conduct a diary study, complemented by entry, mid-point, and exit interviews, collecting diary content and audio recordings.
  3. Use Interpretative Phenomenological Analysis (IPA) for qualitative coding and theme generation.

Research Outcomes

• Specific Findings:

  • HIV management and self-care are interrelated practices. Patients track bodily signals for delayed responses, such as identifying triggers and adjusting balance.
  • Paper diaries facilitate emotional health reflection and medical strategy formulation. The chart trackers help patients identify health patterns and visualize data.
  • Participants viewed the diary as an important tool for enhancing self-control and confidence, though emotional lows could hinder sustained use.

• Advantages Over Existing Solutions:

  • Offers a design perspective based on patients' real-life experiences, emphasizing the role of non-digital tools in emotional support.
  • Focuses on extracting content from patients' daily practices to present "holistic care" rather than mere disease management.

• Experimental and Evaluation Results:

  • The diary study revealed specific challenges in mental health and medication management, showing patients' emotional preference for non-digital tools.
  • Highlighted participants' concerns about data privacy, such as fears of online sharing, government data usage, and anonymity issues.

• Limitations and Future Directions:

  • The study's small sample size of only seven participants may not represent the broader population of people living with HIV.
  • Future research could expand to other countries and explore hybrid resource designs combining digital tools.
  • For the long-term future of telehealth and post-pandemic contexts, reassessing technology access challenges for socioeconomically disadvantaged groups is recommended.

The study emphasizes moving beyond "medicalized" technology design by integrating digital and non-digital elements to create a trusted, safe, and emotionally supportive health technology ecosystem.