Preconception needs and experience of people with mobility disability: Qualitative study of people with lived experience and clinical experts

OBJECTIVES: The purpose of this study was to qualitatively examine preconception health and counseling experiences of people with mobility disabilities through evaluation of personal lived and professional experiences. METHODS: From March 2023 to July 2023, we conducted a descriptive qualitative study of free-text responses collected as part of a larger Delphi study involving a convened panel of experts, including physicians, researchers, and individuals with lived experience of mobility disability, in preconception care and education for individuals with mobility disabilities. Participants were identified by a systematic review of published and gray literature and purposive sampling. Free -text responses were collected from waves of the Delphi study survey questions and analyzed using constant comparison analysis to develop thematic results from the raw data through comparison of experiences, beliefs, and concepts noted within and between respondents. RESULTS: The participants (n = 17) in this study were a group of experts on preconception health and disability, including individuals living with mobility disabilities (n = 7) as well as physicians and researchers in fields related to pregnancy and disability (n = 10). Four major themes were identified: strong patient interest in preconception counseling, ableist perceptions strongly affect the presence and quality of preconception counseling, implicit barriers to preconception counseling and pregnancy planning, and expectations and concerns about a multidisciplinary approach to preconception counseling. CONCLUSIONS: Personalized preconception health is of great interest to women with disabilities, and there are clear knowledge and communication barriers to optimal evaluations of preconception risk and interventions to improve health before and during pregnancy. PRACTICE IMPLICATIONS: Preconception education should be personalized to the specific medical needs and social challenges present for people with mobility disabilities considering pregnancy.