Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2021 Jul;14(3):101056.
doi: 10.1016/j.dhjo.2020.101056. Epub 2020 Dec 24.

Development of a new pregnancy informational and decisional needs survey for women with physical disabilities

Claire Z Kalpakjian  1 , Heidi J Haapala  2 , Susan D Ernst  3 , Brittany R Orians  4 , Melissa L Barber  4 , Ashley L Wiseman  5 , Lukonde Mulenga  2 , Shannen Bolde  2 , Sara Rosenblum  2 , Gina M Jay  2
Affiliations

Development of a new pregnancy informational and decisional needs survey for women with physical disabilities

Claire Z Kalpakjian et al. Disabil Health J. 2021 Jul.

Abstract

Background: While the literature on pregnancy and disability is growing, generating important knowledge of barriers to care and health risks, there is limited literature on pregnancy decision-making and informational needs. Such knowledge is critical for the development of interventions to mitigate the challenges women with disabilities and health care providers face in making this important decision.

Objective: /Hypothesis: Develop a survey of pregnancy decisional and informational needs of women with physical disabilities.

Methods: We developed a conceptual framework that guided item writing, defined the characteristics of the target population, engaged stakeholders with disabilities to collaborate with investigators, and tested the interpretability and relevance of items, and preferred mode of responding (online vs. telephone). A total of 123 women participated in cognitive interviews (N = 13), mode testing (N = 10), or survey data collection (N = 114).

Results: Instructions, three screening questions, and 156 items were tested in one round of 17 cognitive interviews; 25 items were deleted, 94 were revised, and 37 items were retained without changes. The final version of the survey included six sub-sections: the experience of making a decision; information about pregnancy and disability; things affecting a decision; knowing what is important; support for making a decision; and working with health care providers.

Conclusions: The overall performance of the survey supported its content validity and utility as a useful way to gather information about the pregnancy decision-making experience and informational needs of women with physical disabilities.

Keywords: Decision-making; Physical disability; Pregnancy; Survey.

PubMed Disclaimer

Figures

Fig. 1.
Fig. 1.. Item flow of survey development.
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

References

    1. Gavin NI, Benedict MB, Adams EK. Health service use and outcomes among disabled Medicaid pregnant women. Wom Health Issues. 2006;16(6):313–322. - PubMed
    1. Chen YH, Lin HL, Lin HC. Does multiple sclerosis increase risk of adverse pregnancy outcomes? A population-based study. Mult Scler. 2009;15(5): 606–612. - PubMed
    1. Bowden AP, Barrett JH, Fallow W, Silman AJ. Women with inflammatory polyarthritis have babies of lower birth weight. J Rheumatol. 2001;28(2):355–359. - PubMed
    1. Horner-Johnson W, Kulkarni-Rajasekhara S, Darney BG, Dissanayake M, Caughey AB. Live birth, miscarriage, and abortion among U.S. women with and without disabilities. Disabil Health J. 2017;10(3):382–386. - PMC - PubMed
    1. Dissanayake MV, Darney BG, Caughey AB, Horner-Johnson W. Miscarriage occurrence and prevention efforts by disability status and type in the United States. J Wom Health. 2020;29:345–352. 10.1089/jwh.2019.7880. - DOI - PMC - PubMed

Publication types