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Medical Mistrust Among Family Members of Adults with Intellectual Disabilities
Objective/Hypothesis. We undertook a qualitative study to explore potential barriers to screening for women with ID who lived with their families.
Methods. 16 family members underwent semi-structured interviews with prompts focused on health care experiences, cancer screening, and breast health.
Results. Family members reported mistrust of healthcare professionals that had evolved during the early years of caring for their child. While this mistrust often resulted in their being stronger advocates for their child’s care, it also caused them to question and sometimes not heed recommendations regarding screening.
Conclusions. The phenomenon of mistrust should be considered when crafting interventions to improve adherence to healthcare recommendations among women with ID who live with family caregivers.
Learning Areas:
Advocacy for health and health educationAssessment of individual and community needs for health education
Ethics, professional and legal requirements
Provision of health care to the public
Learning Objectives:
List 3 reasons that family members of adults with intellectual disabilities may experience/express mistrust of the medical system, health care providers or medicine
Describe 2 implications that medical mistrust may have for health care access and outcomes of adults with intellectual disabilities
Keyword(s): Disabilities, Marginalization
Qualified on the content I am responsible for because: I am an early career investigator focused on health care access and disparities for women with intellectual disabilities (ID), including cancer screening and primary care, reproductive health and aging among women with ID. This study was conducted in partnership with my mentor, Dr. Joanne Wilkinson, a leader in primary care access for adults with intellectual disabilities who holds multiple federal grants related to increasing access to care for this population.
Any relevant financial relationships? No
I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.