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.

Survey of Neonatal Intensive Care Unit Nurse Attitudes Toward Therapeutic Hypothermia Treatment.

BACKGROUND: The traumatic experiences of parents of babies treated with therapeutic hypothermia (TH) have been described. No research has assessed neonatal intensive care unit (NICU) nurse experience in providing care to hypothermic babies and emotional support to their parents. PURPOSE: To assess NICU nurse attitudes to the provision of TH with respect to perceptions about baby pain/sedation, need for nurse and parent education, decision making about initiation of TH, and barriers to best care. METHODS: A survey was electronically sent to 219 nurses at 2 affiliated academic level III NICUs: 1 rural and 1 urban location. There were 17 questions where responses were selected from a preset list and 7 opportunities for nurses to provide free text responses. FINDINGS: The response rate was 38% (N = 83). Overwhelming similarities between the urban and rural institutions were found with NICU nurses expressing understanding of the indications for initiating TH, agreement that TH improves long-term outcomes and that the benefits of TH outweigh the risks. Nurses at the urban institution more frequently expressed concerns surrounding inadequate treatment of baby pain/sedation, and nurses at both institutions strongly emphasized the need for more nurse and parent education about TH and improved timeliness of decision making for initiation of TH. IMPLICATIONS FOR PRACTICE: NICU nurses specifically want to learn more about outcomes of babies after treatment with TH and feel that parents need more education about TH. IMPLICATIONS FOR RESEARCH: Research is urgently needed to better understand the implications of TH treatment for parent-baby bonding.

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.