Supporting Patients and Families Survey

We are conducting a survey to understand which support services are essential to patients and their families who’ve had severe maternal events in pregnancy, childbirth and the postpartum period.

Findings will be used to help develop support guidelines for hospitals.

Thank you for your interest in this project. The survey is now closed and we are compiling the responses.

About This Study

Project Summary

Preeclampsia Foundation will develop and execute a mixed methods design to evaluate the support needs of women experiencing a severe maternal event and their families.

Through combining needs assessment survey (quantitative) data and focus group (qualitative) data we will determine meaningful support methods from persons who have suffered a severe maternal event (SME) and their families from across the United States, representing diverse demographics.

Through analysis of the data from patients and families, recommendations will be drafted to influence hospital response and protocol for patients suffering SMEs. Reactions and input will be collected from healthcare system administrators and front-line workers in regards to perceived challenges and opportunities for patient support to be offered as part of the care plan. Health system workers will also provide guidance on the feasibility of recommendations informed by patient and staff data to increase utilization.

The insights yielded by this study will be used to inform and update the Alliance on Maternal Health’s (AIM) Patient and Family Support after a Severe Maternal Event Bundle. This bundle will serve as a best practices protocol for hospital systems in the United States.

Study Goals and Objectives

The first aim of the project is to determine the support needs of patients and their families who have experienced a SME, as well as identify patient support resources and services to meet these needs.

Question 1

What processes, supports and services are considered critical to patients and their families in the course of surviving a severe maternal event?

Objective 1a

In collaboration with a workgroup comprised of patient advocacy and healthcare professionals, review the available literature and evidence based resources on patient

support as it relates to SME

Objective 1b

Conduct 3 focus groups with approximately 30 survivors of SME on perceived gaps in patient support, and potential value of support services received.

Objective 1c

In collaboration with a work group comprised of patient advocacy and healthcare professionals, design two needs assessment tools for both survivors of SME and family members of SME.

Objective 1d

In collaboration with a workgroup comprised of patient advocacy and healthcare professionals collect needs assessment responses of at minimum 150 survivors of SME and approximately 60 family members of SME survivors, recruited through voluntary response sampling and ensuring diverse demographic and geographic representation.

The second aim of the study is to determine the feasibility of implementing support resources and to gauge healthcare system buy-in.

Question 2

What is required for the successful implementation and measurement of the recommended supports for patient, families and staff?

Objective 2a

An advisory group of healthcare system administrators will be assembled to provide guidance on the feasibility of recommendations informed by patient and provider data to increase utilization

Patient Selection Criteria and Study Criteria

Selection criteria includes that participants must be (1) at least 18 years of age (2) survivors of severe maternal event or either a spouse/partner, parent or sibling of someone who suffered a severe maternal event; (3) the severe maternal event occurred in the United States. Respondents will self -report whether or not they meet this criterion through a screening survey.

This is a program of the Preeclampsia Foundation, a 501(c)(3) non-profit organization, and is supported by a grant through Merck for Mothers. For more information, visit mommasvoices.org and preeclampsia.org.

3840 W Eau Gallie Blvd, Suite 104

Melbourne, FL 39234

United States of America

info@preeclampsia.org

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