RareICT: A web-based resource to augment self-care and independence with a rare medical condition

Abstract

Objective: Everyday challenges to "live well" with a rare disorder, anorectal anomaly, was the starting point to design a social-software environment, called RareICT, to help patients and family members in their everyday, additional un-paid work.

Participants: Persons with the rare disorder, family members and health providers were recruited to elaborate challenges to daily living given this condition.

Methods: An exploratory study was designed, and we set up a series of participatory design workshops to explore challenges to everyday living with a rare medical condition.

Results: Anorectal anomaly has few visible outward signs, and is often surrounded with secrecies. Findings shed light on efforts to maintain physical functioning, psychosocial and emotional wellbeing. For an affected person to "live well" modifications to everyday routines, along with management work, support work and planning work are required. Accumulating practical strategies, everyday experiences and knowledge, along with virtual access to peers may augment such health maintenance work if integrity, accountability and trust, confidentiality and privacy are maintained.

Conclusion: A social-software environment was set up to offer co-evolving content and augment health-related decision-making at home. To evaluate the project will focus on interest in maintaining participation determined and how users benefit from services such as RareICT.