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Should your visuals be wearing blue, pink or yellow pants (or no pants at all)? Developing specimen self-collection instructions that are more sensitive to the needs of traditionally marginalized and underserved client populations

Farrell J, Haag D, Bondyra M, Thomson K, Gilbert M.

Poster presentation. Gay & Lesbian Medical Association Annual Meeting 2015, Portland, USA. Sept 24-26, 2015.

Background Self-collecting specimens for sexually transmitted infections (STI) and HIV testing is increasingly common, at home and clinical settings. In British Columbia, self-collection will be recommended for some clients of a new online STI/HIV testing platform (GetCheckedOnline). We set out to develop self-collection materials effective and sensitive to the spectrum of bodies, genders, identities, experiences and sexualities of our client population.

Methods We conducted focus groups to gauge acceptability of self-collection and review existing examples of instruction guides and test kits. Based on participant feedback we developed
self-collection materials for oral, anal, and vaginal swabs, which were then tested for usability by participants ranging in gender identity, sexuality, age, education and ethnic background.

Results Overall self-collection was acceptable to 10 focus group participants; however, existing examples of kits/guides elicited distaste due to factors considered barriers to use including being overly gendered (pink/blue; girls/boys), complex, busy, wordy, hard to understand, and for having intimidating medical diagrams and visuals that depict genders that didn’t necessarily match client gender. 11 participants testing the final instruction guides and testing kits considered them easy to read and understand, sensitive to various genders and sexual identities, and conducive to successful self-collection.

Discussion Clinical materials have implicit biases that ‘turn off’ clients and often breed feelings of distrust and alienation from health systems. Focus groups and usability testing that invite and integrates the honest opinions of ‘vulnerable’ communities is a small step that can make a big difference to many patients.