Challenges in conducting sexual health and violence research in older adults beyond GDPR : a Belgian case study
Authors & affiliation
Anne Nobels, Adina Cismaru Inescu, Laurent Nisen, Bastien Hahaut, Gilbert Lemmens, Christophe Vandeviver, Ines Keygnaert
Background: Because of a growing older population, the sexual health (SH) of older adults, including sexual violence (SV), is becoming an increasingly important public health concern. Yet, reliable SV prevalence rates and risk factors are lacking, due to methodological shortcomings in current studies. SV research involves challenges regarding safety and disclosure, especially in older adults. In this paper we reflect on the methods used in a SH&V study in older adults balancing between GDPR imposed privacy rules and ethical and safety guidelines. Methods: To ensure the acceptability of the questionnaire, it was tested in a two-phase pilot study. To maximize SV disclosure, the questionnaire built up gradually towards the more sensitive SV modules. Interviewers were trained to approach participants in a non-judgemental manner. Due to GDPR, our data collection method was changed from a random sampling via the National Register to a cluster random probability sampling with a random route finding approach. Results: Older adults were willing to discuss SH&V during a face-to-face interview with trained interviewers. Following strict safety guidelines, no major incidents were reported. The cluster random probability sampling with random route finding approach provided an adequate sampling frame, but was inefficient and time-consuming. Conclusion: Doing research on SH&V in older adults is feasible, but requires a substantial investment of time and the challenges involved may incur greater costs. Research institutions, donors, and policy makers should convene to investigate how problems related to GDPR can be solved, especially regarding research on sensitive topics and hard to reach populations.
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