Parental perceptions of hypothermia treatment for neonatal hypoxic-ischaemic encephalopathy

Thyagarajan, Balamurugan; Baral, Vijay; Gunda, Ranjit Kumar; Hart, Denise; Leppard, Lisa; Vollmer, Brigitte

doi:10.1080/14767058.2017.1346074

Cited by 29 publications

(29 citation statements)

References 23 publications

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“…For some nurses, the experience of supporting holding improved their ability to empathise with the families of infants undergoing TH. The qualitative data from nurses strongly support previous qualitative work done on the parental experience of TH where it was suggested that holding during TH would have a positive impact on the parent–infant relationship .…”

Section: Discussionmentioning

confidence: 99%

“…Due to concerns for dislodging equipment and potential for warming the infant, many institutions have not permitted parents to hold their infants during TH. While TH has important neurological benefits to the newborn, prior research conducted with nurses and parents indicates that the experience can be psychologically traumatic . The inability to hold an infant during TH is cited as an impediment to bonding , which is generally defined as the feeling of an early emotional connection between a parent and a child.…”

Section: Introductionmentioning

confidence: 99%

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Maternal holding during therapeutic hypothermia for infants with neonatal encephalopathy is feasible

et al. 2019

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Aim Concerns for infant destabilisation often prohibit parental holding of infants during therapeutic hypothermia (TH). We assessed the feasibility of maternal holding during TH, as the inability to hold can impede bonding. Methods Vital signs were assessed in stable infants before, at two‐minute intervals during and 30 minutes after a single 30‐minute holding session. The infant remained on the blanket throughout holding, and both infant and blanket were placed into the mother's arms on top of a thin foam insulating barrier. Mothers and nurses were surveyed about their experience. Results Ten infants undergoing TH for neonatal encephalopathy had no equipment malfunctions or dislodgement. The mean temperature was 33.4°C prior to and 33.5°C (p = 0.18) after holding. There was no significant bradycardia (heart rate <80 beats per minute), hypotension (mean arterial pressure <40 mm Hg) or oxygen desaturation (<93%). Nurses either strongly agreed (75%) or agreed (25%) with the statement ‘After assisting with the holding protocol, I feel that holding during cooling is safe’. Mothers (100%) strongly agreed that other parents would benefit from holding. Conclusion In a small sample of ten stable infants treated with TH for neonatal encephalopathy, holding resulted in no adverse events and positive feedback from mothers and nurses.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Maternal holding during therapeutic hypothermia for infants with neonatal encephalopathy is feasible

et al. 2019

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“…Parents benefit from frequent updates, use of plain English and regular sign-posting to the next step in their infant’s assessment and treatment. Summary discussions that review the infant’s progress from admission provide a vital opportunity to correct misunderstandings 26–28. Communication to parents who cannot understand or speak the English language must include use of a qualified medical translator.…”

Section: Parental Communication Challengesmentioning

confidence: 99%

“…Parental–infant attachment is challenged due to early and prolonged separation. TH apparatus, ventilator tubing and monitoring present both physical and psychological barriers 27 28. Opportunity to be involved in infant cares from an early stage, milk expression and normalisation of infant handling following rewarming may help 27…”

Section: Parental Communication Challengesmentioning

confidence: 99%

“…Box 1 lists some of the key learning points that have been identified by qualitative research studies into parental experiences.

Key learning from qualitative studies investigating parental experiences following admission of an infant with hypoxic ischaemic encephalopathy for therapeutic hypothermia (TH)26–28 (1) Consistent and frequent communication: Brief update by the neonatal team prior to transfer to the neonatal unit.Senior member of the neonatal team should update parents as soon as possible after admission.If the mother is unable to come to the neonatal unit, the neonatal team should go to the mother (or direct telephone call where in a different hospital).Medical updates should be provided at least daily or after any significant event.Ideally both parents, or alternatively an additional supporting family member, should be present for significant updates.Summary discussions should be provided to clarify parents’ total understanding of events.Obstetric debrief, before the mother’s discharge, will be beneficial for parental understanding of delivery events. (2) Avoid jargon and acknowledge prognostic uncertainty: Use simple lay language; explain jargon if used.TH within guideline criteria is not experimental; parents should be reassured it is well researched and ‘proven’.Be honest regarding uncertainty; this is inevitable.Share what prognostic information is known openly and honestly.Ensure postdischarge follow-up is offered with sufficient time to address parental anxiety and questions. (3) Address barriers to attachment :Parents should see, and by preference have physical contact with, baby prior to transport from delivery room.Maximise opportunities for parental physical contact and involvement (eg, stationary holding of infant’s hand, scheduled cares/nappy changes and feeding if started).Ensure pain is monitored and attended to; reassure parents of this.Provision of parent room on unit or patient hotel, if distance from home is barrier to parental visiting.Explain the function of monitoring equipment used in basic terms.Ensure early parental orientation to hospital facilities and unit routines (including coffee room/vending machines/restaurant, ward round/hand over times, visiting hours for extended family and parking).…”

Section: Parental Communication Challengesmentioning

confidence: 99%

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Fifteen-minute consultation: Therapeutic hypothermia for infants with hypoxic ischaemic encephalopathy—translating jargon, prognosis and uncertainty for parents

Cawley

Chakkarapani

2019

Arch Dis Child Educ Pract Ed

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Hypoxic ischaemic encephalopathy may lead to death or severe long-term morbidity. Therapeutic hypothermia (TH) increases survival without impairments in childhood, but prognostic uncertainty may remain for years after birth. Clear and accurate communication is imperative but challenging. This article explores the predictive value of routinely performed assessments during TH, as well as the qualitative research relating to parental experience. This article will benefit paediatric trainees, consultants and nurse practitioners in providing: (1) the background information needed for initiating a conversation with parents regarding outcome and (2) optimising their communication with parents in translating jargon, prognosis and uncertainty.

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Experiences of parents whose school‐aged children were treated with therapeutic hypothermia as newborns: A focus group study

Kokkonen Nassef,

Blennow Bohlin,

Jirwe

2023

Nursing Open

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AimTo describe parents' past and present experiences of their newborn infant's therapeutic hypothermia (TH) treatment after perinatal asphyxia 10–13 years after the event.BackgroundNewborn infants are treated with TH following perinatal asphyxia to improve neurodevelopmental outcomes.DesignA qualitative descriptive design using focus groups (FGs).MethodsTwenty one parents to 15 newborn infants treated with TH between 2007 and 2009 participated in five FGs. The FGs were transcribed verbatim and analysed using framework approach. The SRQR checklist was followed for study reporting.ResultsTwo main categories were identified: hardships and reliefs during TH treatment and struggles of everyday life. Both categories include three subcategories, the first: (1) concern and gratitude for the unrecognized treatment, (2) insufficiency of information and proposed participation and (3) NICU nurses instilled security and hope. The second with subcategories: (1) unprocessed experiences of the TH treatment, (2) later challenges at school and (3) existential and psychological challenges in everyday life.ConclusionTH of their newborns affected the parents psychologically not only during the treatment, but lasted months and years later. Information and communication with health care professionals and school management were inefficient and inadequate. The parents' concerns could be prevented by an improved identification and understanding of the problems and the needs of the infants and their families before discharge.Relevance for Clinical PracticeThrough more personalized and efficient preparation and communication by the nursing staff before discharge, many of the parents' worries and problems could be reduced. Check‐up of parents' needs of psychosocial support before and after discharge and offering counselling should become routine. Also, nurses at Well‐Baby Clinics and in school health care should receive knowledge about TH treatment and the challenges the children and the parents experience.Patient or Public ContributionParticipation of parents was limited to the data provided through interviews.

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Parental perceptions of hypothermia treatment for neonatal hypoxic-ischaemic encephalopathy

Cited by 29 publications

References 23 publications

Maternal holding during therapeutic hypothermia for infants with neonatal encephalopathy is feasible

Maternal holding during therapeutic hypothermia for infants with neonatal encephalopathy is feasible

Fifteen-minute consultation: Therapeutic hypothermia for infants with hypoxic ischaemic encephalopathy—translating jargon, prognosis and uncertainty for parents

Experiences of parents whose school‐aged children were treated with therapeutic hypothermia as newborns: A focus group study

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