The impact of anencephaly on parents: A mixed-methods study.

This study used a convergent parallel mixed-method design to explore the impact of an anencephalic pregnancy on parents. Twenty women and four men between 18-59 years old participated. Interview transcripts were analyzed using interpretive phenomenology and synthesized with Perinatal Grief Intensity Scale scores using a Pearson's correlation. Overall, 75% of parents scored intense grief. Qualitative patterns included overwhelming trauma, patient-centeredness as critical, stigmatizing perinatal loss, embracing personhood, and reframing reality. Control over care was associated with decreased grief (p =.019). Health care professionals are ideally positioned to reduce the risk of intense grief in parents experiencing an anencephalic pregnancy.

Providing Palliative Care to Neonates With Anencephaly in the Home Setting.

Parents who choose to carry a pregnancy complicated by a life-limiting congenital anomaly such as anencephaly may give birth to a live neonate and be discharged home. Very little guidance is available to health care professionals providing palliative care in the home setting to this population. This article is a secondary analysis that discusses the concerns and complications that parents experienced after bringing home a neonate with anencephaly. Each parental experience is a qualitative descriptive summary extracted from a larger study on the impact of anencephaly on parents. Parents reported feeling alone in their grief and struggled with their partners' differing style of grief. Parents' primary concerns after hospital discharge included transporting their neonate home, feeding their neonate, changing cranial defect dressings, managing pain and seizures, addressing uncertainty, and facilitating a good death. All parents received hospice services from health care professionals without perinatal bereavement training or experience. Only 1 woman received follow-up care after the death of her son. Preparing and educating health care professionals providing hospice and palliative services with perinatal bereavement training may be beneficial. Identifying and allocating local and online perinatal bereavement resources may provide parents with the tools and support necessary to facilitate healing after perinatal loss.

Uncovering Prolonged Grief Reactions Subsequent to a Reproductive Loss: Implications for the Primary Care Provider.

INTRODUCTION: There is a paucity of clinical guidelines for the routine assessment of maladaptive reproductive grief reactions in outpatient primary care and OB-GYN settings in the United States. Because of the disenfranchised nature of perinatal grief reactions, many clinicians may be apt to miss or dismiss a grief reaction that was not identified in the perinatal period. A significant number of those experiencing a reproductive loss exhibit signs of anxiety, depression, or post-traumatic stress disorder. Reproductive losses are typically screened for and recorded numerically as part of a woman's well-visit intake, yet this process often fails to identify patients emotionally troubled by a prior pregnancy loss. MATERIALS AND METHODS: A summative content analysis of 164 recent website blogs from female participants who self-reported having experienced a miscarriage or abortion in their lifetime was conducted. The narratives were reviewed for details regarding the time span between the pregnancy loss and the composition of the blog post. The stories were analyzed for subsequent relationship problems and detrimental mental health conditions. Maladaptive reactions were contrasted for those that indicated a greater than 12 months' time-lapse and those who had not. RESULTS: More than a third (39.6%) of the women reported in the narrative that at least one year or more had passed since experiencing the miscarriage or abortion. For those women, the median time span between the loss and composing the blog was 4 years with a range of 47 years. Mental health conditions attributed to the reproductive loss by those who reported longer bereavement times included subsequent relationship problems, substance misuse, depression, suicidal ideation, and PTSD. The percent of reported maladaptive issues was more than double (136.9% vs. 63.6%) for those who reported that a year or more had passed since the loss of the pregnancy. DISCUSSION: Grief reactions following the loss of a pregnancy may be prolonged or delayed for several months which can contribute to adverse biopsychosocial outcomes. Recognition and treatment of maladaptive grief reactions following a pregnancy loss are critical. Screening methods should be enhanced for clinicians in medical office settings to help identify and expedite the appropriate mental health assistance.

Qualitative Interpretive Metasynthesis of Parents' Experiences of Perinatal Loss.

OBJECTIVE: To identify and synthesize common, experiential themes from qualitative studies of parents who experienced perinatal loss. DATA SOURCES: We searched PubMed, CINAHL, and PsycINFO for qualitative articles about parents' experiences of perinatal loss. STUDY SELECTION: We included research on parents' experiences of perinatal loss published in English in the last 10 years. We excluded articles on the perspectives or experiences of health care professionals or persons other than the biological parent who experienced the perinatal loss, systematic reviews, outcome studies, and gray literature. DATA EXTRACTION: We used a priori inclusion and exclusion criteria and identified five articles in which perinatal loss was described from the parents' perspectives. We extracted thematic findings and supporting quotes from each article and documented them in a table for subsequent synthesis. DATA SYNTHESIS: We used a qualitative metasynthesis and interpretive model to synthesize findings from the included studies. Findings were synthesized into one overarching theme, The Paradox of Perinatal Loss, and four subthemes: Complex Emotional Responses, Prenatal Bonding-Acknowledging Personhood, Interactions With Health Care Professionals, and Traversing the Social Sphere. CONCLUSION: Our findings indicate that perinatal loss is often a transformative event during which parents experience multiple losses and intense, complex emotions. Interactions with health care professionals greatly affected the pregnancy experience, which places professionals in a unique position to positively influence parents' overall experiences. Therefore, it is important to develop protocols related to perinatal loss and ensure that staff are adequately trained and equipped to care for parents during this experience. Findings from this synthesis may also inform the future development of theory related to bereavement surrounding perinatal loss.

The Impact of Communication Surrounding Intrauterine Congenital Anomaly Diagnoses: An Integrative Review.

Congenital anomalies are the leading cause of infant death in the United States, accounting for 20% of the annual infant mortality. Advancements in ultrasound diagnostic technology allow practitioners to diagnose fetal anomalies as early as 11 weeks' gestational age, 75% of which are detected in low-risk pregnancies. Communicating a fetal anomaly diagnosis to parents and initiating perinatal end-of-life discussions are difficult for healthcare providers and parents alike. Furthermore, poorly communicated diagnoses have had long-term negative impacts on perinatal grief intensity, which can manifest into lifelong symptoms of adverse psychosocial outcomes such as anxiety, depression, substance abuse, and suicidal ideation. The purpose of this integrative review is to examine the impact of communication in discussing an intrauterine diagnosis of a fetal congenital anomaly on perinatal grief. An integrative review was conducted following the distinct 5-stage process of problem identification, searching the literature, evaluating data, analyzing, and presenting findings. A systematic literature review using the PICO model (Population, Intervention, Comparison, Outcome) and structured after the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA). This framework was completed between November 2017 and May 2018 using PubMed, CINAHL, and PsycINFO databases. Of the 931 article results, 15 satisfied search criteria. Emerging themes included parental need for appropriate time to assimilate and understand the diagnosis, freedom to explore options and alternatives, and the need for clinicians with expert communication skills. The initial conversation communicating the diagnosis of a congenital anomaly impacts expectant parents for the remainder of their lives. Healthcare professionals are in a unique position to either positively or negatively impact the intensity of perinatal grieving reactions. The application of empathetic, sensitive communication may offer solace and promote healing surrounding perinatal end-of-life discussions.