{"id":{"repo_id":"ku","oai_identifier":"oai:kuscholarworks.ku.edu:1808/37881"},"canonical_url":"https://search.dev.ndltd.org/etd/ku/oai:kuscholarworks.ku.edu:1808/37881","repository":{"repo_id":"ku","name":"University of Kansas","base_url":"https://kuscholarworks.ku.edu/server/oai/request"},"display":{"title":"Scale Development to Identify Psychosocial Distress During Pregnancy with Fetal Anomaly: A Mixed Method Study","abstract":"Abstract My interest in children and families began early in my career as a clinician in community mental health. I quickly came to understand that children thrive when their parents are supported and well - yet in many systems of care, parents are often treated as secondary to the needs of the child. This realization shaped my professional trajectory and eventually led me to a role in a newly developing fetal health center, a novel model of care that integrates prenatal and obstetric services within a pediatric hospital setting. In this role, I supported pregnant individuals and their partners through the profound uncertainty and emotional complexity of receiving a fetal diagnosis, helping them navigate both the present and an uncertain future. This work deepened my awareness of the psychosocial challenges faced during these pregnancies and ultimately led to the research questions that shaped this dissertation. Despite growing recognition of the emotional toll of a fetal diagnosis, the psychosocial experiences of pregnant individuals navigating these diagnoses remain underexplored in both research and practice. Existing studies often focus on clinical outcomes or neonatal interventions, leaving significant gaps in our understanding of how these diagnoses affect mental health, identity, and emotional wellbeing during pregnancy. Moreover, the tools commonly used to assess perinatal mental health have been validated primarily in low-risk populations and may fail to capture the specific forms of distress experienced in the context of fetal anomaly. These gaps limit our ability to provide meaningful, patient-centered care during a particularly vulnerable time. My dissertation seeks to address this knowledge gap by advancing our understanding of psychosocial distress in this unique population and developing more relevant ways to identify and support those at risk. Two manuscripts provided the foundation for my dissertation. The first, “Mental Health in pregnancy complicated by fetal anomaly: Depression screening and referrals in a single fetal care center”, was a quantitative retrospective study to identify the rate of positive depression screening with individuals diagnosed with fetal anomaly. We examined a number of socioeconomic variables, fetal diagnoses and prognoses, and uptake of mental health referrals alongside the screening data. The results showed a 30% positive depression screening rate, double that of individuals in all pregnancies, and a higher likelihood for positive screening with an uncertain fetal prognosis. The second manuscript, “Psychological Impact of Fetal Anomaly Diagnosis: A Scoping Review”, reviewed and analyzed 10 studies that examined the prevalence of mental health symptoms during pregnancy with fetal anomaly. The review identified the use of nine different screening instruments for depression, anxiety, and traumatic stress, with inconsistent thresholds for determining intervention and varied timing of administration. It also highlighted a notable lack of attention to broader psychosocial distress and limited reporting of participants' sociodemographic characteristics. My dissertation is presented in two manuscripts. The first manuscript, “Carrying Uncertainty: How a Fetal Anomaly Diagnosis Shapes Maternal Mental Health and Psychosocial Distress”, focused on the lived psychosocial and mental health experience of individuals who carried a pregnancy with fetal anomaly. Findings highlighted common dimensions of psychosocial distress, including identity disruption, stigma, isolation, and uncertainty. Participants’ mental health was influenced by both social and healthcare factors, and was supported by compassionate, person-centered care. The second manuscript, “Developing a Psychosocial Distress Screening Instrument for Pregnancy with Fetal Anomaly Using the Delphi Method,” described the development of validated items to compose a screening tool tailored to the unique psychosocial needs of this population. Using a multi-round Delphi process with expert stakeholders, the study identified core domains of distress and achieved consensus on priority items to guide screening in clinical settings.","abstract_html":"Abstract My interest in children and families began early in my career as a clinician in community mental health. I quickly came to understand that children thrive when their parents are supported and well - yet in many systems of care, parents are often treated as secondary to the needs of the child. This realization shaped my professional trajectory and eventually led me to a role in a newly developing fetal health center, a novel model of care that integrates prenatal and obstetric services within a pediatric hospital setting. In this role, I supported pregnant individuals and their partners through the profound uncertainty and emotional complexity of receiving a fetal diagnosis, helping them navigate both the present and an uncertain future. This work deepened my awareness of the psychosocial challenges faced during these pregnancies and ultimately led to the research questions that shaped this dissertation. Despite growing recognition of the emotional toll of a fetal diagnosis, the psychosocial experiences of pregnant individuals navigating these diagnoses remain underexplored in both research and practice. Existing studies often focus on clinical outcomes or neonatal interventions, leaving significant gaps in our understanding of how these diagnoses affect mental health, identity, and emotional wellbeing during pregnancy. Moreover, the tools commonly used to assess perinatal mental health have been validated primarily in low-risk populations and may fail to capture the specific forms of distress experienced in the context of fetal anomaly. These gaps limit our ability to provide meaningful, patient-centered care during a particularly vulnerable time. My dissertation seeks to address this knowledge gap by advancing our understanding of psychosocial distress in this unique population and developing more relevant ways to identify and support those at risk. Two manuscripts provided the foundation for my dissertation. The first, “Mental Health in pregnancy complicated by fetal anomaly: Depression screening and referrals in a single fetal care center”, was a quantitative retrospective study to identify the rate of positive depression screening with individuals diagnosed with fetal anomaly. We examined a number of socioeconomic variables, fetal diagnoses and prognoses, and uptake of mental health referrals alongside the screening data. The results showed a 30% positive depression screening rate, double that of individuals in all pregnancies, and a higher likelihood for positive screening with an uncertain fetal prognosis. The second manuscript, “Psychological Impact of Fetal Anomaly Diagnosis: A Scoping Review”, reviewed and analyzed 10 studies that examined the prevalence of mental health symptoms during pregnancy with fetal anomaly. The review identified the use of nine different screening instruments for depression, anxiety, and traumatic stress, with inconsistent thresholds for determining intervention and varied timing of administration. It also highlighted a notable lack of attention to broader psychosocial distress and limited reporting of participants' sociodemographic characteristics. My dissertation is presented in two manuscripts. The first manuscript, “Carrying Uncertainty: How a Fetal Anomaly Diagnosis Shapes Maternal Mental Health and Psychosocial Distress”, focused on the lived psychosocial and mental health experience of individuals who carried a pregnancy with fetal anomaly. Findings highlighted common dimensions of psychosocial distress, including identity disruption, stigma, isolation, and uncertainty. Participants’ mental health was influenced by both social and healthcare factors, and was supported by compassionate, person-centered care. The second manuscript, “Developing a Psychosocial Distress Screening Instrument for Pregnancy with Fetal Anomaly Using the Delphi Method,” described the development of validated items to compose a screening tool tailored to the unique psychosocial needs of this population. Using a multi-round Delphi process with expert stakeholders, the study identified core domains of distress and achieved consensus on priority items to guide screening in clinical settings.","abstract_has_math":false,"creators":["Hansen, Kara"],"institution":"University of Kansas","degree_name":null,"degree_level":null,"degree_discipline":null,"degree_department":null,"school":null,"contributors":[],"advisors":["Mische-Lawson, Lisa"],"committee_chairs":[],"committee_members":[],"year":2025,"date_issued":"2025-01-01","date_published":"2025-01-01","updated_at":"2026-07-24T02:44:56Z","subjects":["Psychology","Social work","Health sciences","congenital anomaly","fetal anomaly","maternal fetal","perinatal mental health","psychosocial distress"],"languages":["en"],"rights":["This item is protected by copyright and unless otherwise specified the copyright of this thesis/dissertation is held by the author."],"rights_urls":[],"identifier_entries":[{"key":"dc:identifier.other","label":"Dc Identifier Other","values":["https://www.proquest.com/LegacyDocView/DISSNUM/32113520"],"render_values":[{"text":"https://www.proquest.com/LegacyDocView/DISSNUM/32113520","href":"https://www.proquest.com/LegacyDocView/DISSNUM/32113520","code":true}]}]},"links":{"outbound_url":"https://hdl.handle.net/1808/37881","outbound_label":"Handle","outbound_source":"dc:identifier.uri"},"metadata_groups":[{"id":"people","label":"People","entries":[{"key":"dc:contributor.advisor","label":"Advisor","values":["Mische-Lawson, Lisa"]},{"key":"dc:creator","label":"Author","values":["Hansen, Kara"]}]},{"id":"academic_context","label":"Academic Context","entries":[{"key":"dc:date.accessioned","label":"Dc Date Accessioned","values":["2026-04-21T21:02:40Z"]},{"key":"dc:date.available","label":"Dc Date Available","values":["2026-04-21T21:02:40Z"]},{"key":"dc:date.issued","label":"Date","values":["2025-01-01"]},{"key":"dc:publisher","label":"Institution","values":["University of Kansas"]},{"key":"dc:type","label":"Dc Type","values":["Dissertation"]}]},{"id":"subjects_keywords","label":"Subjects and Keywords","entries":[{"key":"dc:subject","label":"Dc Subject","values":["Psychology","Social work","Health sciences","congenital anomaly","fetal anomaly","maternal fetal","perinatal mental health","psychosocial distress"]}]},{"id":"language_rights","label":"Language and Rights","entries":[{"key":"dc:language.iso","label":"Language (ISO)","values":["en"]},{"key":"dc:rights","label":"Dc Rights","values":["This item is protected by copyright and unless otherwise specified the copyright of this thesis/dissertation is held by the author."]}]},{"id":"identifiers","label":"Identifiers","entries":[{"key":"dc:identifier.other","label":"Dc Identifier Other","values":["https://www.proquest.com/LegacyDocView/DISSNUM/32113520"]},{"key":"dc:identifier.uri","label":"Identifier URI","values":["https://hdl.handle.net/1808/37881"]}]},{"id":"additional","label":"Additional Metadata","entries":[{"key":"dc:description.abstract","label":"Abstract","values":["Abstract My interest in children and families began early in my career as a clinician in community mental health. I quickly came to understand that children thrive when their parents are supported and well - yet in many systems of care, parents are often treated as secondary to the needs of the child. This realization shaped my professional trajectory and eventually led me to a role in a newly developing fetal health center, a novel model of care that integrates prenatal and obstetric services within a pediatric hospital setting. In this role, I supported pregnant individuals and their partners through the profound uncertainty and emotional complexity of receiving a fetal diagnosis, helping them navigate both the present and an uncertain future. This work deepened my awareness of the psychosocial challenges faced during these pregnancies and ultimately led to the research questions that shaped this dissertation. Despite growing recognition of the emotional toll of a fetal diagnosis, the psychosocial experiences of pregnant individuals navigating these diagnoses remain underexplored in both research and practice. Existing studies often focus on clinical outcomes or neonatal interventions, leaving significant gaps in our understanding of how these diagnoses affect mental health, identity, and emotional wellbeing during pregnancy. Moreover, the tools commonly used to assess perinatal mental health have been validated primarily in low-risk populations and may fail to capture the specific forms of distress experienced in the context of fetal anomaly. These gaps limit our ability to provide meaningful, patient-centered care during a particularly vulnerable time. My dissertation seeks to address this knowledge gap by advancing our understanding of psychosocial distress in this unique population and developing more relevant ways to identify and support those at risk. Two manuscripts provided the foundation for my dissertation. The first, “Mental Health in pregnancy complicated by fetal anomaly: Depression screening and referrals in a single fetal care center”, was a quantitative retrospective study to identify the rate of positive depression screening with individuals diagnosed with fetal anomaly. We examined a number of socioeconomic variables, fetal diagnoses and prognoses, and uptake of mental health referrals alongside the screening data. The results showed a 30% positive depression screening rate, double that of individuals in all pregnancies, and a higher likelihood for positive screening with an uncertain fetal prognosis. The second manuscript, “Psychological Impact of Fetal Anomaly Diagnosis: A Scoping Review”, reviewed and analyzed 10 studies that examined the prevalence of mental health symptoms during pregnancy with fetal anomaly. The review identified the use of nine different screening instruments for depression, anxiety, and traumatic stress, with inconsistent thresholds for determining intervention and varied timing of administration. It also highlighted a notable lack of attention to broader psychosocial distress and limited reporting of participants' sociodemographic characteristics. My dissertation is presented in two manuscripts. The first manuscript, “Carrying Uncertainty: How a Fetal Anomaly Diagnosis Shapes Maternal Mental Health and Psychosocial Distress”, focused on the lived psychosocial and mental health experience of individuals who carried a pregnancy with fetal anomaly. Findings highlighted common dimensions of psychosocial distress, including identity disruption, stigma, isolation, and uncertainty. Participants’ mental health was influenced by both social and healthcare factors, and was supported by compassionate, person-centered care. The second manuscript, “Developing a Psychosocial Distress Screening Instrument for Pregnancy with Fetal Anomaly Using the Delphi Method,” described the development of validated items to compose a screening tool tailored to the unique psychosocial needs of this population. Using a multi-round Delphi process with expert stakeholders, the study identified core domains of distress and achieved consensus on priority items to guide screening in clinical settings."]},{"key":"dc:title","label":"Title","values":["Scale Development to Identify Psychosocial Distress During Pregnancy with Fetal Anomaly: A Mixed Method Study"]}]}],"canonical_facts":{"dc:contributor.advisor":["Mische-Lawson, Lisa"],"dc:creator":["Hansen, Kara"],"dc:date.accessioned":["2026-04-21T21:02:40Z"],"dc:date.available":["2026-04-21T21:02:40Z"],"dc:date.issued":["2025-01-01"],"dc:description.abstract":["Abstract My interest in children and families began early in my career as a clinician in community mental health. I quickly came to understand that children thrive when their parents are supported and well - yet in many systems of care, parents are often treated as secondary to the needs of the child. This realization shaped my professional trajectory and eventually led me to a role in a newly developing fetal health center, a novel model of care that integrates prenatal and obstetric services within a pediatric hospital setting. In this role, I supported pregnant individuals and their partners through the profound uncertainty and emotional complexity of receiving a fetal diagnosis, helping them navigate both the present and an uncertain future. This work deepened my awareness of the psychosocial challenges faced during these pregnancies and ultimately led to the research questions that shaped this dissertation. Despite growing recognition of the emotional toll of a fetal diagnosis, the psychosocial experiences of pregnant individuals navigating these diagnoses remain underexplored in both research and practice. Existing studies often focus on clinical outcomes or neonatal interventions, leaving significant gaps in our understanding of how these diagnoses affect mental health, identity, and emotional wellbeing during pregnancy. Moreover, the tools commonly used to assess perinatal mental health have been validated primarily in low-risk populations and may fail to capture the specific forms of distress experienced in the context of fetal anomaly. These gaps limit our ability to provide meaningful, patient-centered care during a particularly vulnerable time. My dissertation seeks to address this knowledge gap by advancing our understanding of psychosocial distress in this unique population and developing more relevant ways to identify and support those at risk. Two manuscripts provided the foundation for my dissertation. The first, “Mental Health in pregnancy complicated by fetal anomaly: Depression screening and referrals in a single fetal care center”, was a quantitative retrospective study to identify the rate of positive depression screening with individuals diagnosed with fetal anomaly. We examined a number of socioeconomic variables, fetal diagnoses and prognoses, and uptake of mental health referrals alongside the screening data. The results showed a 30% positive depression screening rate, double that of individuals in all pregnancies, and a higher likelihood for positive screening with an uncertain fetal prognosis. The second manuscript, “Psychological Impact of Fetal Anomaly Diagnosis: A Scoping Review”, reviewed and analyzed 10 studies that examined the prevalence of mental health symptoms during pregnancy with fetal anomaly. The review identified the use of nine different screening instruments for depression, anxiety, and traumatic stress, with inconsistent thresholds for determining intervention and varied timing of administration. It also highlighted a notable lack of attention to broader psychosocial distress and limited reporting of participants' sociodemographic characteristics. My dissertation is presented in two manuscripts. The first manuscript, “Carrying Uncertainty: How a Fetal Anomaly Diagnosis Shapes Maternal Mental Health and Psychosocial Distress”, focused on the lived psychosocial and mental health experience of individuals who carried a pregnancy with fetal anomaly. Findings highlighted common dimensions of psychosocial distress, including identity disruption, stigma, isolation, and uncertainty. Participants’ mental health was influenced by both social and healthcare factors, and was supported by compassionate, person-centered care. The second manuscript, “Developing a Psychosocial Distress Screening Instrument for Pregnancy with Fetal Anomaly Using the Delphi Method,” described the development of validated items to compose a screening tool tailored to the unique psychosocial needs of this population. Using a multi-round Delphi process with expert stakeholders, the study identified core domains of distress and achieved consensus on priority items to guide screening in clinical settings."],"dc:identifier.other":["https://www.proquest.com/LegacyDocView/DISSNUM/32113520"],"dc:identifier.uri":["https://hdl.handle.net/1808/37881"],"dc:language.iso":["en"],"dc:publisher":["University of Kansas"],"dc:rights":["This item is protected by copyright and unless otherwise specified the copyright of this thesis/dissertation is held by the author."],"dc:subject":["Psychology","Social work","Health sciences","congenital anomaly","fetal anomaly","maternal fetal","perinatal mental health","psychosocial distress"],"dc:title":["Scale Development to Identify Psychosocial Distress During Pregnancy with Fetal Anomaly: A Mixed Method Study"],"dc:type":["Dissertation"]},"updated_at":"2026-07-24T02:44:56Z"}