How can we make self-sampling packs for sexually transmitted infections and bloodborne viruses more inclusive? A qualitative study with people with mild learning disabilities and low health literacy

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Middleton, Alan and Pothoulaki, Maria and Woode Owusu, Melvina and Flowers, Paul and Mapp, Fiona and Vojt, Gabriele and Laidlaw, Rebecca and Estcourt, Claudia S. (2021) How can we make self-sampling packs for sexually transmitted infections and bloodborne viruses more inclusive? A qualitative study with people with mild learning disabilities and low health literacy. Sexually Transmitted Infections, 97. pp. 276-281. ISSN 1368-4973 (https://doi.org/10.1136/sextrans-2020-054869)

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Abstract

Objectives: 1.5 million people in the UK have mild to moderate learning disabilities. STIs and bloodborne viruses (BBVs) are over-represented in people experiencing broader health inequalities, which include those with mild learning disabilities. Self-managed care, including self-sampling for STIs/BBVs, is increasingly commonplace, requiring agency and health literacy. To inform the development of a partner notification trial, we explored barriers and facilitators to correct use of an STI/BBV self-sampling pack among people with mild learning disabilities. Methods: Using purposive and convenience sampling we conducted four interviews and five gender-specific focus groups with 25 people (13 women, 12 men) with mild learning disabilities (July-August 2018) in Scotland. We balanced deductive and inductive thematic analyses of audio transcripts to explore issues associated with barriers and facilitators to correct use of the pack. Results: All participants found at least one element of the pack challenging or impossible, but welcomed the opportunity to undertake sexual health screening without attending a clinic and welcomed the inclusion of condoms. Reported barriers to correct use included perceived overly complex STI/BBV information and instructions, feeling overwhelmed and the manual dexterity required for blood sampling. Many women struggled interpreting anatomical diagrams depicting vulvovaginal self-swabbing. Facilitators included pre-existing STI/BBV knowledge, familiarity with self-management, good social support and knowing that the service afforded privacy. Conclusion: In the first study to explore the usability of self-sampling packs for STI/BBV in people with learning disabilities, participants found it challenging to use the pack. Limiting information to the minimum required to inform decision-making, € easy read' formats, simple language, large font sizes and simpler diagrams could improve acceptability. However, some people will remain unable to engage with self-sampling at all. To avoid widening health inequalities, face-to-face options should continue to be provided for those unable or unwilling to engage with self-managed care.

ORCID iDs

Middleton, Alan, Pothoulaki, Maria, Woode Owusu, Melvina, Flowers, Paul ORCID logoORCID: https://orcid.org/0000-0001-6239-5616, Mapp, Fiona, Vojt, Gabriele, Laidlaw, Rebecca and Estcourt, Claudia S.;
CORE (COnnecting REpositories)