SPECIAL ISSUE: Sexual and Reproductive Health of Women with Disability
Research paper
Reproductive healthcare experiences of women with cerebral palsy

https://doi.org/10.1016/j.dhjo.2017.03.015Get rights and content

Abstract

Background

Little is known about pregnancy rates in women with disabilities in general and even less is known about women with child-onset disabilities such as cerebral palsy (CP).

Hypothesis

We hypothesized that discussions about pregnancy with healthcare providers and pregnancy rates for woman with CP would be related to their functional levels.

Methods

Survey methodology was used to gather information about demographics, function, whether women were asked about their desire for children, pregnancy outcomes, and services offered during pregnancy and postpartum.

Results

Of the 375 women with CP who participated in the survey, 76 (20%) reported 149 pregnancies resulting in 100 live births. Using Chi square statistics, mobility, manual dexterity, and communication function were significantly higher in women who were queried about or who experienced pregnancy. More than half of the women experienced a loss of mobility during pregnancy but few received referrals for physical or occupational therapy. Few reported screening for postpartum depression. A higher rate of Cesarean sections (50.4%), preterm births (12.1%), low birth weight infants (15.7%), and very low birth weight infants (7.1%) was reported by women with CP compared to national statistics.

Conclusions

Pregnancy rates and discussions were related to functional levels. As 20% of women with CP surveyed experienced pregnancy, there is a need to increase awareness, education, support, and advocacy for achievement of optimal reproductive health. More research is needed to identify factors contributing to maternal and infant health in women with CP.

Section snippets

Methods

Participants were included in this study if they were diagnosed with CP and were ≥18 years of age. CP describes a group of permanent disorders of the development of movement and posture, that can be associated with cognitive and communication difficulties, due to non-progressive disturbances that occurred in the developing fetal or infant brain.25 Participants were recruited from CP Centers and clinics at four large university-based medical institutions. In addition, flyers were distributed to

Results

The participant survey was completed by 375 women with CP. Nineteen women completed a paper survey and 46 women (12.3%) completed the survey over the telephone. The largest response came from areas surrounding the coordinating site in New York (n = 185) followed by Chicago (n = 74), Los Angeles (n = 73), and Boston (n = 43) areas. The majority of respondents (73.3%) checked “myself” as completing the survey. As expected, many women (n = 100) required assistance. Of these women, 30.0% required

Discussion

There is limited research on pregnancy of women with disabilities, and much is based on small samples that are qualitative in nature.9 Findings from this study indicated 20% of the women surveyed experienced at least one pregnancy resulting in 149 pregnancies and 100 live births. However, fewer than one-third of the participants in this study were ever asked by a health care provider about their desire to have children. Functional abilities were significantly linked with whether women were

Conclusions

This is the largest study to focus on pregnancy and delivery for women with CP and yields important information. Approximately 20% of the women surveyed had one or more pregnancies, and the participant pool included young women just beginning their reproductive years. There is a need to discuss and support their desire for sexual relationships and pregnancy. CP specialists should begin these conversations and make referrals during adolescence and early adulthood. Our data reveal the need to

Prior Presentations

Data included in this manuscript was presented at the American Public Health Assoc. meeting in Denver, CO on October 2016, the American Academy of Cerebral Palsy & Developmental Medicine (AACPDM) meeting in Hollywood FL September 2016, the European Academy of Childhood Disability meeting in Stockholm, Sweden June 2016, and the AACPDM annual meeting in Austin, TX October 2015.

Funding

This study was funded by a donation from the 100 Women in Hedge Fund organization to the Cerebral Palsy Foundation. The authors have no financial conflicts to declare.

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