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Middleton A, Pothoulaki M, Woode Owusu M, et al. 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. Sex Transm Infect. 2021;97(4):276-281doi: 10.1136/sextrans-2020-054869.
Middleton, A., Pothoulaki, M., Woode Owusu, M., Flowers, P., Mapp, F., Vojt, G., Laidlaw, R., & Estcourt, C. 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(4), 276-281. https://doi.org/10.1136/sextrans-2020-054869
Middleton, Alan, et al. "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 vol. 97,4 (2021): 276-281. doi: https://doi.org/10.1136/sextrans-2020-054869
Middleton A, Pothoulaki M, Woode Owusu M, Flowers P, Mapp F, Vojt G, Laidlaw R, Estcourt CS. 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. Sex Transm Infect. 2021 Jun;97(4):276-281. doi: 10.1136/sextrans-2020-054869. Epub 2021 Apr 27. PMID: 33906976; PMCID: PMC8165145.
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Sex Transm Infect. 2021 Jun;97(4):276-281. doi: 10.1136/sextrans-2020-054869. Epub 2021 Apr 27.

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

Alan Middleton, Maria Pothoulaki, Melvina Woode Owusu, Paul Flowers, Fiona Mapp, Gabriele Vojt, Rebecca Laidlaw, Claudia S Estcourt

Affiliations

  1. Nursing & Community Health, School of Health 7 ife Sciences, Glasgow Caledonian University, Glasgow, UK [email protected].
  2. Glasgow Caledonian University, School of Health and Life Sciences, Glasgow, UK.
  3. The Institute for Global Health, University College London, London, UK.
  4. School of Psychological Sciences and Health, University of Strathclyde, Glasgow, UK.
  5. Nursing & Community Health, School of Health 7 ife Sciences, Glasgow Caledonian University, Glasgow, UK.

PMID: 33906976 PMCID: PMC8165145 DOI: 10.1136/sextrans-2020-054869

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.

© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ.

Keywords: delivery of health care; health services research; patient participation; qualitative research; sexual health

Conflict of interest statement

Competing interests: None declared.

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