Alternative knowledge claims about the risks of copper IUDs and HPV vaccine in the social media era

The Internet has created new opportunities to search for information about health, which has been linked to increased questioning of expert knowledge, the spread of false information and threats to health. This project has investigated alternative knowledge claims regarding the contraceptive copper IUD, as well as attitudes to HPV vaccination. 

Our interview studies of alternative knowledge claims about serious side effects of the copper IUD found that these are based on different types of knowledge. The claims should not be regarded as unscientific per se, as that gives a simplified picture that risks increasing the distance to those making them. The women drew on their own experiences, and we investigated aspects of how this was done. This, and an account of what we see as the strengths and weaknesses of their arguments, offers resources for distinguishing between and evaluating different alternative knowledge claims. The study of the claims and of healthcare providers’ approach to them further shows that both revolve around principles of evidence-based medicine and patient-centered care. The women pointed out shortcomings in the form of insufficient research and unclear routines regarding the reporting of suspected side effects, and inadequate treatment of patients. Overall, the studies enable more informed and nuanced discussion of alternative knowledge claims.

A survey study of attitudes to the copper IUD showed that a negative attitude was linked to lower trust in and satisfaction with healthcare, and to lower perceived access to and ability to value information about the IUD. Many called for more research and better communication about side effects.

The survey study also investigated attitudes to the HPV vaccine. A majority reported, as expected, a positive attitude. Still, 34 percent indicated some hesitation and many expressed uncertainty about the vaccine’s risks and benefits. Regarding vaccination overall, only 55 percent expressed a very positive attitude. Many described an active process of evaluating information, including a changing attitude over time. This is in some opposition to a polarizing understanding of people as either strongly for or against vaccines. Hesitancy was more common in groups with lower education and income and linked to a lack of trust in heathcare. 

Publications

Gunnarsson, Lena & Wemrell, Maria (2023). The different facets of ‘experiential knowledge’ in Swedish women's claims about systemic side effects of the copper intrauterine device. Sociology of Health and Illness, 45 (7), 1483-1501.   

Gunnarsson, Lena & Wemrell, Maria (2023). On the verge between the scientific and the alternative: Swedish women’s claims about systemic side effects of the copper intrauterine device.  Public Understanding of Science, 32 (2), 175-189. 

Gunnarsson, Lena & Wemrell, Maria (2024). Assessing the validity of counter-authority knowledge: The case of Swedish women’s epistemic patchworking around the risks of copper IUD use. Journal of Critical Realism, 23 (5), 480-502. 

Wemrell, Maria & Gunnarsson, Lena (2022). Attitudes Toward HPV Vaccination in Sweden: A Survey Study.  Frontiers in Public Health, 10. 

Wemrell, Maria & Gunnarsson, Lena (2022). Attitudes Toward the Copper IUD in Sweden: A Survey Study.  Epidemiologic Methods, 3. 

Wemrell, Maria & Gunnarsson, Lena (2023). Claims in the clinic: A qualitative group interview study on healthcare communication about unestablished side effects of the copper IUD. PLOS ONE, 18 (9). 

Wemrell, M, Perez, Vicente R & Merlo, J. Mapping sociodemographic and geographical differences in HPV non-vaccination among young girls in Sweden. Scandinavian Journal of Public Health. 2022: 14034948221075410. 

Wemrell, Maria & Gunnarsson, Lena (2022). Systemiska biverkningar av kopparspiralen? Kvinnors berättelser  och vårdgivares förhållningssätt. 

Harradine, Linda (2023) Att dra allt över en kam påverkar förtroendet för sjukvården, Örebro universitet, 20 april.