Dataset Information

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

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.

SUBMITTER: Kalpakjian CZ

PROVIDER: S-EPMC8222421 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:ObjectiveDesign and pilot test a new decision making tool for women with physical disabilities (impairment of physical function due to chronic conditions) considering pregnancy.Data sources and study settingQuantitative surveys and qualitative interviews were collected from participants living in the community.Study designClinical guidelines and survey and focus group data about pregnancy informational and decisional needs guided content development. The tool was pilot tested in a 12-week trial with participants with physical disabilities considering or actively planning a pregnancy. Feasibility outcomes were acceptability, implementation, and demand (collected at end of the trial); preliminary efficacy focused on decisional conflict and readiness (baseline, 6 weeks, and end of trial).Data collectionSurvey data were collected using an online form. One-on-one interviews were conducted to learn more about experience using the tool.Principal findingsThirty eight participants with mild, moderate, or severe physical disabilities participated. Feasibility outcomes indicated that the tool provided participants with information, guiding questions, and helped them to consider multiple aspects of the decision about pregnancy. Most participants responded positively to the new decision making tool, finding it easy to use and the information balanced. Feedback highlighted opportunity for improvement, such as more specific information, peer stories, and the limitations of a paper format. There was significant linear effect of time, with increased decisional certainty and readiness, values clarity, and decisional support (partial η2 [90% CI] = 0.310 [0.08, 0.46], 0.435 [0.19, 0.60], 0.134 [0, 0.29], 0.178 [0.01, 0.35], respectively). Decisional certainty and readiness had high observed power (96.7% and 99.3%, respectively) with lower observed power for clarity and support (60.6% and 75.1%, respectively).ConclusionsThe new tool shows promise for supporting women with physical disabilities in navigating pregnancy decision making. Future development of complementary strategies to support health care providers will help improve shared decision making and patient-centered care.

Project description:ObjectivesTo explore the current status to which Canadian obstetrics and gynaecology (Ob-Gyn) programmes teach residents about pregnancy in patients with physical disabilities, and to assess the level of interested in providing formal education sessions in this field. This study also assesses the residents' perception of their knowledge and their comfort level caring for women with physical disabilities (WWPD), which will further determine the need for incorporation of this topic into the residency curriculum.DesignCross-sectional survey.SettingAll Canadian English accredited Ob-Gyn residency programmes.ParticipantsProgramme directors and residents.Main outcome measuresThe current self-reported education and exposure Canadian Ob-Gyn residents have surrounding WWPD in pregnancy, and if there is an interest in further education in this area.MethodsAn online survey was developed and distributed to all Canadian English accredited Ob-Gyn residency programme directors and residents. Answers were collected over a 2-month period in 2017, which consisted of an initial email and two email reminders. Questions were in three key areas: demographic characteristics, knowledge gap and level of interest in a formal method of education.ResultsEighty-four residents and nine programme directors participated in the surveys. Eighty-six per cent of residents and all programme directors responded that there are no formal scheduled training sessions on WWPD as part of the residency curriculum. Two-thirds of the residents reported being uncomfortable with the management issues surrounding a woman with a disability in pregnancy. A vast majority of residents (91.67%) and all programme directors have an interest in incorporating this topic into the residency curriculum to meet the need of pregnant women with disabilities.ConclusionsThis survey indicated that there is both a need for and interest in education in the area of pregnancy and physical disability in the Canadian Ob-Gyn residency programme. This information suggests that the development of educational materials in this area should be considered to address an unmet need with the ultimate goal of improving the care provided to WWPD in pregnancy. Future projects in this area should focus on content development taking into account the CanMEDS and competency-based medical education framework.