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Pregnancy Decision-Making Among Women With Physical Disabilities: Cross-Sectional Survey Study
Claire Z Kalpakjian1, Susan D Ernst2, Heidi J Haapala1
1Department of Physical Medicine and Rehabilitation, University of Michigan Medical School, Ann Arbor, Michigan, USA.
Objective:
Understand the pregnancy informational needs and decision-making of women with physical disabilities.
Design:
Cross-sectional.
Setting:
Community.
Sample:
114 adult American women with physical disabilities who had experience making a decision about pregnancy while disabled.
Methods:
Online survey.
Main Outcome Measures:
Pregnancy information needs and decision-making survey.
Results:
Among the most important factors (very much-quite a bit) for decision-making were risks to the baby (72.8%) and themselves (58.7%), happiness of their partner (65.8%), and long-term effects of pregnancy on health (58.8%). Most had the least (not at all-a little bit) knowledge about equipment to care for an infant (57.9%), how to adapt as their body changed (54.4%), or ways to care for their infant (53.5%). Most had some to a lot of confidence (66.7%) in healthcare providers' recommendations but were highly variable about how much their individual concerns were understood. Important information (very much-quite a bit) included other health problems (92.5%), caring for an infant (94.2%), medications (88.4%), ambulation (78.5%), balance problems (82.6%), and spasticity (68.2%); this information was often difficult to find and unhelpful. Others were helpful when engaging in realistic discussions, being emotionally supportive, and providing financial and physical support. Healthcare providers were supportive when setting realistic expectations, providing non-biased information, discussing risks, providing reassurance, and collaborating with other specialists.
Conclusions:
While pregnancy decision-making was challenging, participants had realistic concerns, often amplified by their disability and disability-related concerns. These results highlight areas where interventions can be developed to improve the experience of pregnancy decision-making.
