Affiliations: Institute of Health and Society, University of Oslo,
Oslo, Norway | InterMedia, University of Oslo, Oslo, Norway
Note: [] Address for correspondence: Anne Moen, RN, PhD, Institute of
Health and Society, P.O. Box 1130, Blindern, N-0318 Oslo, Norway. Tel.: +47
22850540; Fax: +47 22850570; E-mail: anne.moen@intermedia.uio.no
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.
Keywords: Self-care, health maintenance in the home, Web 2.0, wiki, social software, rare diagnoses
