How can we make self-sampling packs for sexually transmitted infections and blood borne viruses more inclusive? A qualitative study with people with mild learning disabilities and low health literacy
Authors: Middleton Alan , Pothoulaki Maria , Owusu Melvina Woode , Flowers Paul , Mapp Fiona , Vojt Gabriele , Laidlaw Rebecca , Estcourt Claudia S 
Published: November 2020

Objectives

1.5 million people in the UK have mild to moderate learning disabilities. Sexually transmitted infections (STIs) and blood borne 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 amongst 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 female, 12 male), 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 vulvo-vaginal 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.

Key messages

People with mild learning disabilities found the existing self-sampling pack overly complex; many would not use it and did not feel able to engage with self-managed care at all.

Minimum “need to know” information, very simple diagrams, and “easy read” formats specific to the needs of people with mild learning disabilities, could improve acceptability.

Adoption of self-sampling and other elements of self-managed care without provision of alternative care models could widen health inequalities.

Face-to-face options need to be provided but identifying those with limited health literacy will be challenging.