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

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 ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement This work presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (reference number RP-PG-0614-20009). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. The funders had no role in study design, collection, management, analysis and interpretation of data; writing of the report and the decision to submit the report for publication. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: Ethical approval was obtained from Glasgow Caledonian University School of Health and Life Sciences Ethics Committee (HLS/PSWAHS/17/194). All necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines and uploaded the relevant EQUATOR Network research reporting checklist(s) and other pertinent material as supplementary files, if applicable. Yes The data that support the findings of this study are available from the corresponding author, [AM], upon reasonable request.