Universal Design Patterns for stoma care away-from-home

Abstract

RESEARCH Please cite this paper as: Froyen H, Verdonck E, De Meester D, and Heylighen A. Universal design patterns for stoma care away-from-home. AMJ 2009, 1, 13, 213-216 Doi 10.4066/AMJ.2009.159 Abstract Accommodating the real diversity of user populations, including those with physical and / or mental impairments and functional limitations, requires a large amount of design information in connection with human dis-abilities (limitations and possibilities). In order to collect and organise this information for designers and decision makers, Universal Design Patterns (UD Patterns) offer descriptive information about, on the one hand, CONFLICTS between users and built environments, and on the other hand, empirically evident design RESOLUTIONS. Direct collaboration with users / experts was tested in the development of a specific UD Pattern for a (Semi-) ambulant accessible toilet for personal care, with specific emphasis on stoma-care in public facilities. The paper illustrates how people with ostomies and care-givers communicate with researchers, and how relevant design information is extracted and structured. On a more general level, results show how environment-related dimensions of human functioning differ from medical aspects, and how direct involvement of end-users enriches the content of design information. Key words: accessibility, disability, evidence-based design, stoma care, Universal Design, Universal Design Patterns, users / experts Introduction Including the real diversity of user populations in the design of the built environment requires a large amount of design information in connection with human dis-abilities (limitations and possibilities). In order to collect and organise this information for decision makers and designers, we advance Universal Design Patterns [1] as key elements in the process of the systematic elimination of handicap situations in the built environment [2]. By way of example, a search was made into major design aspects for toilet facilities for stoma care away-from-home. Contrary to the incredible amount and diversity of architectonic aspects and elements, potentially responsible for disabling built environments, the disability of people who use urostomy and colostomy bags is centred on toileting, often involving a frequent and urgent need to use a toilet to empty or change their bag [3]. This is a primary reason for the strategic choice of this clearly delimited research theme of ‘conflicts’ and ‘resolutions’ for stoma care. A second reason is that colostomy manifests itself in the social area as ‘a hidden disability’ and that designers cannot distil data from first principles from informal observations of the persons involved. A third reason is that comprehensive generic design information in connection with this theme is also lacking, for example, in architectural design guides [4], and also in the many printed and digital ‘Patient’s Guides to Colostomy Care’. Exceptions, such as the recent The Accessible Toilet Resource [3], confirm this situation. Methods The limited research into relevant architectural design aspects for spaces and facilities for stoma care away-from-home was carried out in Belgium in the period July to December 2008. A literature search on relevant architectural design aspects included medical and paramedical sources of information. In August 2008 these design aspects were discussed with care-giver TL (Enterostomal Therapist) and the facilities for stoma care in Imelda Hospital, Bonheiden were analysed. On location, discussions were conducted with hospitalised persons with ostomies (female, 40 yrs., ileostomy; male 75 yrs., colostomy). As a consequence, the list of relevant design aspects was adapted and expanded. In September 2008 the tentative research data were presented orally to the local Ostomy Association Keerbergen, with 40 persons with ostomies and their spouses / significant others in the audience. A questionnaire that was handed out, which listed and described relevant architectural design aspects was answered anonymously by 18 persons with ostomies. Discussions were conducted with two persons present with