The taboo of sexuality and the desire for parenthood of people with intellectual disabilities living in care facilities in France

Abstract

How do the support staff and the families of the residents with intellectual disabilities of care facilities in France perceive the latter’s sexual life and desire for parenthood and how is this taken into account in their interactions? Life-history interviews conducted with seven family caregivers and four focus groups using Photolanguage^® conducted with the support staff were analyzed using a thematic and a psychodynamic analysis. Both institutional rules and families’ concerns impact the sexual expression of the residents. Their sexual and intimate lives are primarily perceived as an ‘additional problem’. Fearing the reactions of the families, support staff tend to keep residents in the dark about reproductive and sexual health issues These findings reveal an urgent need to change the paradigm in these institutions: a vision of residents as fully-fledged adults who can make choices and who have the right to clear information in their sexual and intimate life.

Points of interest

• In France, people with intellectual disabilities still largely live in care homes administered by parents’ associations, where there are not always explicit common rules on the sexual and intimate lives of the residents.

• The sexual and intimate lives of care home residents are both recognised and set aside by families and staff, who tend to view these aspects as problems to be managed. The autonomy and free choice of residents on these issues are largely prevented, which forces them into a position of incapacity.

• This tendency to prevent residents from making informed choices generates a culture of incident that makes sexual violence against professionals and other residents more likely.

• There is an urgent need for training for French professionals and residents on intimate and sexual life in the residential setting, along with ongoing support for parents of children with intellectual disabilities.

Keywords:

• Intellectual disability
• desire
• care homes
• family
• institution
• support network

Acknowledgments

We would like to thank the IReSP and CNSA for their funding of this research and all the institutions, families and professionals that participated in the study.

Ethical approval

The study was conducted according to the guidelines of the Declaration of Helsinki. Ethical review and approval were waived for this study, as it involved experiments in humanities and social sciences in the field of health, and was therefore not regarded as research involving human persons under Article R1121-1 of the French Public Health Code.

Informed consent

Informed consent was obtained from all subjects involved in the study.

Authors contributions

Conceptualization, T.G.; methodology, T.G. and B.S.; validation, A.E., E.V. and A.C.; formal analysis, M.M.; investigation, M.M. and T.G.; resources, T.G.; data curation, M.M.; writing—original draft preparation, M.M.; writing—review and editing, T.G. and B.S.; visualization, A.E.; supervision, B.S. and A.C.; project administration, T.G.; funding acquisition, T.G. All authors have read and agreed to the published version of the manuscript.

Disclosure statement

The authors declare no conflict of interest. The funders had no role in the design of the study; in the collection, analyses, or interpretation of data; in the writing of the manuscript, or in the decision to publish the results.

Additional information

Funding

This research received an external funding by IReSP, grant [number 1811034-00].