Parental perceptions of neonatal therapeutic hypothermia; emotional and healing experiences.

Introduction: Parents of infants who undergo therapeutic hypothermia experience emotional challenges that have not been fully characterized. Comprehensive understanding of the parental experience of hypothermia is needed to provide better care to the family of the infant. This study aimed to improve the understanding of the parental emotional experience of therapeutic hypothermia in the Neonatal Intensive Care Unit (NICU).Methods: Semistructured interviews were conducted in a group setting with parents matched into groups according to the severity of the infant's presenting encephalopathy. The interviews were transcribed and coded into principal and additional subthemes.Results: Families of 15 infants, who were between 2 months and 2 years at the time of the interview, participated. Infants had a mean gestational age of 40.0 weeks and 11 (73%) were male. Eleven (73%) were transferred from other hospitals following birth and eight (53%) had seizures. Emotional Experiences was a principal theme and included subthemes of traumatic experiences, Loss of normalcy, and Separation of parent and infant. The birth was frequently described as traumatic with descriptions of chest compressions, excessive blood loss and infants not crying. Trauma was also described in the parental observations of the shivering hypothermic infant. Parents highlighted the loss of normalcy in terms of their expected birth narrative and the loss of the early opportunity to breastfeed and hold their infant. Parents reported that the physical separation imposed by hypothermia adversely impacted their ability to bond with their infant. Healing Experiences was the other principal theme with subthemes identified as Incorporation of parents into NICU care, Reclaiming parenthood and Support from other hypothermia families. Parents reported feeling a connection to their infant when they were involved in medical rounds and when asked to participate in routine care of their infant. Occasionally, parents strongly advocated for their own participation in a particular aspect of their infant's care such as a diaper change and this was perceived as reinforcing their role as parent. Lastly, parents requested greater access to peer support from parents who had experienced therapeutic hypothermia.Conclusion: Parents of infants treated with hypothermia reported the experience of their unexpected adverse delivery and their baby subsequently being treated with therapeutic hypothermia as traumatic. This trauma can be compounded by the pale, still and shivering appearance of their newborn and the delay in bonding as a result of physical separation during hypothermia treatment. Parents described feeling connected to their infant in the context of performing routine care activities and desired greater access to peer support. The themes reported in this study could be used to inform high level NICU care and raise provider awareness of the parent experience.

Exploring parent expectations of neonatal therapeutic hypothermia.

OBJECTIVE: We aimed to assess the parent experience of therapeutic hypothermia (TH), specifically focusing on unmet expectations. STUDY DESIGN: Open-ended questions were used in a focus group setting. We employed an inductive approach to develop thematic content from the transcribed recordings. RESULTS: 30 parents of infants treated with TH participated. Within the principal theme of managing expectations, four sub-themes emerged. These included parental concerns about morphine use; specifically the association of morphine with end-of-life care and addiction. Parents perceived their role as key in the decision to implement TH and were emotionally burdened by this during and after TH. Parents recall intense fear for the infant's immediate survival and were not sufficiently reassured regarding survival. Parents also experience ongoing uncertainties about the long-term prognosis after TH. CONCLUSION: The identification of these four areas in which parents have unmet expectations is important in order to improve the delivery of care.

The Interplay Between Digital Media Use and Development.

Today's youth develop immersed in a digital media world and the effects are specific to their developmental stage. Clinicians and caretakers should be mindful regarding digital media use patterns; however, this complex and reciprocal relationship defies simple linear descriptions. The impacts of digital media can be powerful. It is important to be cautious but not over-pathologize media use because digital media enables social connections, allows self-soothing in some children, and fills needs for stimulation and self-expression. Young children or those with psychiatric disorders or developmental delays should be considered vulnerable to harmful effects of media content and overuse.

Exploring Parent Experience of Communication About Therapeutic Hypothermia in the Neonatal Intensive Care Unit.

BACKGROUND: The unique communication challenges faced by parents of infants undergoing therapeutic hypothermia have not been well characterized. PURPOSE: To develop awareness of communication challenges experienced by families of infants treated with therapeutic hypothermia. METHODS: Semistructured interviews were conducted in a group setting with parents matched into groups according to the severity of the infant's presenting encephalopathy. The interviews were transcribed and coded into principal and additional subthemes. RESULTS: Thirty adults were interviewed including 15 mothers, 12 fathers, 2 grandmothers, and 1 grandfather. The 15 infants were between 2 and 24 months of age at the time of the interviews. The principal theme of communication included the following 3 subthemes; transparency, consistency, and delivery style. Parents reported a strong desire for improved early and transparent communication about therapeutic hypothermia, particularly during transfer from an outside hospital. Parents also reported a preference for consistent communication and highlighted parental touch of the hypothermic infant, obstetrical nurse-to-neonatal intensive care unit nurse communication, and parent and visitor presence in the infant's room as areas in need of greater communication consistency. Parents valued direct and compassionate communication styles that excluded medical jargon. IMPLICATIONS FOR PRACTICE: All providers can implement recommendations for communication to parents of infants treated with therapeutic hypothermia by increasing transparency, developing greater consistency in the communication delivered, and employing a direct and compassionate style to improve the parental experience of therapeutic hypothermia. IMPLICATIONS FOR RESEARCH: Further investigation is needed into the specific challenges parents face with a lack of transparent communication prior to the transfer of an infant for therapeutic hypothermia.

Erythroid-lineage-specific engraftment in patients with severe hemoglobinopathy following allogeneic hematopoietic stem cell transplantation.

OBJECTIVE: We aimed to create a molecular assay to monitor erythroid (red blood cell [RBC]) engraftment in any patient following allogeneic hematopoietic stem cell transplantation, independent of disease-specific mutations. MATERIALS AND METHODS: We identified 10 common single nucleotide polymorphisms (SNPs), expressed by genes encoding RBC antigens and structural proteins. These SNPs were polymerase chain reaction-amplified from total RNA extracted from peripheral blood, which contains nucleated erythroid progenitors. Mixing studies validated that each SNP can quantitatively measure donor/recipient DNA and RNA. RESULTS: We directly genotyped 23 patients who underwent hematopoietic stem cell transplantation and their human leukocyte antigen-matched donors and found a median of three informative SNPs (i.e., discordant between donor and recipient) per pair. By using the informative RBC SNPs to quantify donor-derived RBC transcripts, we compared rates of RBC engraftment in 13 patients with hemoglobinopathies vs donor mononuclear cell (white blood cell [WBC]) engraftment. Consistent with known ineffective erythropoiesis associated with hemoglobinopathies, we detected up to threefold greater RBC-specific compared to overall WBC engraftment in five of eight patients who were mixed chimeras by transplant day 30. The remaining three of eight who received ABH-incompatible grafts, demonstrated at least 0.5-fold lower RBC compared to WBC engraftment that was related to persistence of host-derived anti-isohemagglutinin antibodies. CONCLUSION: This RNA-based assay can be used to monitor RBC-specific engraftment regardless of a patient's specific hemoglobin mutation or even diagnosis. We propose that panels of expressed SNPs informative for other cell lineages can be created to comprehensively assess the impact of novel stem cell-based therapies on lineage-specific engraftment.

Isolated antibody to hepatitis B core antigen in human immunodeficiency virus type-1-infected individuals.

We screened 651 human immunodeficiency virus (HIV)-1-infected subjects for hepatitis B surface antigen (HBsAg) and antibody to hepatitis B surface antigen (anti-HBs). Of a total of 387 subjects who tested negative for both HBsAg and anti-HBs, 142 underwent further testing for isolated presence of antibody to hepatitis B core antigen (anti-HBc). Of these 142 subjects, 60 (42%) tested positive for anti-HBc (isolated anti-HBc). Individuals coinfected with HIV-1 and hepatitis C virus (HCV) were more likely to have isolated anti-HBc than were subjects with HIV-1 alone (80% vs. 16%, respectively). Our findings suggest that individuals with HIV-1/HCV coinfection for whom there is no serological evidence for hepatitis B virus when screened with HBsAg and anti-HBs will be positive for anti-HBc in >75% of cases. A screening strategy that tests only for HBsAg and anti-HBs in HIV-1-infected patients will miss a large number of individuals with isolated anti-HBc.