Threat and adaptation: The maternal lived experience of continuing pregnancy after receiving a prenatal diagnosis of agenesis of the corpus callosum.

One stated objective of prenatal screening and diagnosis is the preparation for delivering a baby with medical needs or disability, however, psychosocial outcomes of parents who received a prenatal diagnosis suggest that this objective is not yet realised. Preparation may be complicated by diagnostic and prognostic uncertainty. A prenatal diagnosis that includes significant uncertainty due to the heterogeneous presentations, classifications, causes and outcomes is agenesis of the corpus callosum. As a neuroanatomical anomaly identified in the second or third trimesters, the diagnosis is likely to cause distress for expectant mothers, yet there is limited guidance for holistic support. To begin to address the paucity of research, this hermeneutic phenomenological study sought to explore, and provide a telling of the maternal experience of continuing pregnancy after a prenatal diagnosis of agenesis of the corpus callosum. Through interviews and a series of online, asynchronous and facilitated focus groups, lived experiences during pregnancy from the time of diagnosis to birth were explored with 26 mothers who participated in this international study. Themes were constructed through reflexive thematic analysis to describe the experience of the lived phenomenon. The first theme, Under Threat, included subthemes of The Threat to the Life of the Baby and Threatened Image of the Expected Family. The second theme, Day to Day Toward Adaptation, included subthemes of Holding it Together and Falling Apart, and More Than Information, Searching for Meaning, Hope and Control. To realise the commonly stated objective of prenatal diagnosis, to support maternal preparation, healthcare professionals require awareness of the profound, yet individual experience of prenatal diagnosis to adequately respond and support mothers through their continued pregnancies. Healthcare services should be designed to flexibly respond in a woman- and family-centred manner to reduce the threat and support maternal adaptation after a prenatal diagnosis.

Mental health nursing and the prenatal diagnosis of a congenital anomaly; a narrative of experience.

WHAT IS KNOWN ON THE SUBJECT: Many parents find out that their unborn baby has a difference in their health, development, or genetics. This news is often unexpected and can be distressing and traumatic, which can lead to anxiety. There is a gap in support for parents. WHAT THE PAPER ADDS TO EXISTING KNOWLEDGE: This paper offers a story of the lived experience of the first-author, a mental health nurse who was told that her baby had a difference late in pregnancy. The narrative moves through the anxiety and difficulties faced when falling between gaps in the systems. WHAT ARE THE IMPLICATIONS FOR PRACTICE: This paper identifies the need for more support for parents who receive a prenatal diagnosis. This support is within the mental health nurse scope of practice across a range of settings and services. People who have been given a psychiatric diagnosis have been excluded from other studies that explore the experience of the unexpected news of a congenital anomaly. Research in this area is indicated. RELEVANCE TO MENTAL HEALTH NURSING: Mental health nurses are well-positioned to address the gap in psychosocial support for parents who have received a prenatal diagnosis. As clinicians who are recognized to deliver federally funded pregnancy support counselling, psychosocial support is within the mental health nurse scope of practice. Some parents will require a higher level of support, assessment and intervention when they experience reactive mental illness or pre-existing mental illness is exacerbated. Furthermore, people who have received a psychiatric diagnosis have been excluded from studies that explore the experience of receiving a prenatal diagnosis. This exclusion has resulted in a gap in knowledge. ABSTRACT: Introduction Expectant parents who receive a prenatal diagnosis of a congenital anomaly often experience shock, distress and a heightened risk of mental illness. Aim This paper aimed to highlight the gap in psychosocial support for parents who receive a prenatal diagnosis through the personal narrative of a mental health nurse who received a third-trimester diagnosis. Method The first-author reviewed her medical records and photos to recall moments of the experience and prompt reflection. Findings The narrative moved through the shock, guilt and subsequent pathological anxiety that followed a prenatal diagnosis at 32-week gestation and the option to terminate. Discussion The gap in psychosocial supports for parents who receive a prenatal congenital anomaly diagnosis raises the risk to parental mental health and potentially confounds the risk to the baby. Mental health nurses are well-positioned as service providers to fill this gap. Implications for Practice The provision of psychosocial support after a prenatal diagnosis is within the mental health nurse scope of practice. This support may be provided through pregnancy support counselling, innovative nurse-led perinatal mental health services or as additional support to a parent with the lived experience of mental illness who receives a prenatal diagnosis of a congenital anomaly.

Scoping Review of the Prenatal Diagnosis of Agenesis of the Corpus Callosum.

OBJECTIVE: To map and summarize the literature related to the prenatal diagnosis of agenesis of the corpus callosum (ACC) to inform nursing practice. DATA SOURCES: We searched MEDLINE, CINAHL, PyscINFO, and Academic Search Complete with the use of strings of curated terms to cover the broad ACC nomenclature. Documents were published in English between 2009 and June 1, 2020. We also hand searched the reference lists of included documents. STUDY SELECTION: We screened 582 abstracts and retrieved the full texts of primary research articles, reviews, discussion papers, and peer-reviewed book chapters if the abstracts specifically mentioned ACC and the prenatal period. We excluded case reports, conference and poster abstracts, papers on broader anomalies, and animal studies. We reviewed 84 full-text documents and identified 61 for inclusion. DATA EXTRACTION: We charted the data through an iterative process under headings for location, article type, study design, participant age, ACC type, recruitment, method, tools/assessments, results, key recommendations, gestational age at diagnosis, termination of pregnancy rate, the definition of isolated ACC, and our notes of critique of the document. DATA SYNTHESIS: We constructed a narrative synthesis from thematically arranged data. In the included documents, ACC was diagnosed between 17 and 38 weeks gestation and was frequently described as heterogeneous because of different causes, presentations, and outcomes. Whether the ACC was isolated as the only anomaly or present with other anomalies was considered the key factor for prenatal counseling. However, the definition of isolated ACC was inconsistent. CONCLUSION: The inconsistent nomenclature and definitions of an isolated presentation of ACC increase the ambiguity in the prenatal diagnosis and must be considered when the outcome and diagnostic efficacy studies are interpreted. There is an absence of research on parents' experiences of prenatal diagnoses of ACC to inform holistic nursing interventions and the provision of psychosocial support.

An Analysis of Twitter Discourse Regarding Identifying Language for People on the Autism Spectrum.

Person-first language, to refer to a person with autism, has been dominant within peer-reviewed literature; however, there are autistic people who prefer identity-first language. This is a shift from the language championed within mental health nursing; therefore it is important to understand the meaning and actions within identifying language. This analysis of 29,606 words of Twitter discourse explored the political struggle between the modes of language. Differences within the conceptualisation of autism and disability underpinned varied subject positions and the rearticulation of autism and expertise was identified. Contextually driven adoption of identifying language requires awareness of the potential benefits and consequences.

Identifying Language for People on the Autism Spectrum: A Scoping Review.

Person-first language is considered a central component to recovery oriented person-centred care; however, there is a growing adoption of identify-first language among autistic advocates. Mental health nurses require awareness of critical autism issues given the high prevalence of comorbid psychopathology. This scoping review of literature from 2010 to 2018 regarding identifying language for people on the autism spectrum identified a paucity of research that systematically explored and considered antagonisms, representation, and potential consequences of either of the current modes of identifying language becoming dominant. Mental health nurses should appreciate the complexity within identifying language and adopt context dependent language.