Parent experience of HIE and hypothermia: A call for trauma informed care

Purpose/Background: Therapeutic hypothermia (TH) is the standard treatment for hypoxic ischemic encephalopathy (HIE). We surveyed parents of infants treated with TH about their experiences of communication and parental involvement in the Neonatal Intensive Care Unit (NICU). Methods/Approach: A 29-question anonymous survey was posted on a parent support website (https://www.hopeforhie.org) and sent to members via e-mail. Responses from open-ended questions were analyzed using thematic analysis. Results: 165 respondents completed the survey and 108 (66%) infants were treated with TH. 79 (48%) respondents were dissatisfied/neutral regarding the quality of communication in the NICU, whereas 127 (77%) were satisfied/greatly satisfied with the quality of parental involvement in the NICU. 6 themes were identified: 1) Setting for communication: Parents preferred face to face meetings with clinicians. 2) Content and clarity of language: Parents valued clear language (use of layman’s terms) and being explicitly told the medical diagnosis of HIE. 3) Immediate and Longitudinal Emotional Support: Parents required support from clinicians to process the trauma of the birth experience and hypothermia treatment. 4) Clinician time and scheduling: Parents valued the ability to join rounds and other major conversations about infant care. 5) Valuing the Parent Role: Parents desired being actively involved in rounds, care times and decision making. 6) Physical Presence and Touch: Parents valued being physically present and touching their baby; this presence was limited by COVID-related restrictions. Conclusion: We highlight stakeholder views on parent involvement and parent-clinician communication in the NICU and note significant overlap with principles of Trauma Informed Care: safety (physical and psychological), trustworthiness and transparency, peer support, collaboration and mutuality, and empowerment, voice and choice. We propose that a greater understanding and implementation of these principles may allow the medical team to more effectively communicate with and involve parents in the care of infants with HIE in the NICU.

The utility of continuous glucose monitoring systems in the management of children with persistent hypoglycaemia

Objectives Glucose monitoring is vital in children with persistent hypoglycaemia to reduce the risk of adverse neuro-behavioural outcomes; especially in children with hyperinsulinism. The role of continuous glucose monitoring (CGM) systems in monitoring glucose levels in this cohort is limited. The objective of this study was to ascertain the effectiveness of CGM and to evaluate parents’ experience of using CGM for monitoring glucose levels in children with hypoglycaemia. Methods Retrospective analysis of sensor glucose (SG) values from Dexcom G4 CGM with paired finger-prick blood glucose (BG) values was performed to determine the accuracy of CGM. The parent experience of CGM was assessed using a questionnaire administered to families of children with congenital hyperinsulinism currently attending the clinic. Results SG data from 40 children (median age 6 months) with persistent hypoglycaemia (60% Hyperinsulinism) were analysed. The mean difference between 5,650 paired BG and SG values was 0.28 mmol/L. The sensitivity and specificity of CGM to identify severe hypoglycaemia (BG < 3.0 mmol/L) were 54.3% (95% CI: 39.0%, 69.1%) and 97.4% (95% CI: 96.9%, 97.8%) respectively. Parents (n=11) reported less anxiety (n=9), better sleep at night (n=7) and preferred to use CGM for monitoring (n=9). Conclusions Although the high number of false-positive readings precludes the routine use of CGM in the evaluation of hypoglycaemia, it avoids unnecessary BG testing during normoglycaemia. It is an acceptable tool for parents for monitoring their children who are at risk of hypoglycaemia. Newer CGM systems with improved accuracy at lower glucose levels have the potential to further improve monitoring.

Parents Experience in Giving Sex Education to Adolescents in North Kuta

Sexual education is an important think that parents can do to prevent free sex and it effects in adolescent. It is possible because family is the first place of education, but it appears to be inadequately practiced in Indonesia. This study aims to determine parent experience to provide sexual education in adolescents. We used a phenomenology interpretative approach in this study. We collected the data through in-depth interviews with ten parents. We found five themes: (1) good perception about sexual education, (2) sexual education delivered assisted by social media, (3) the topic is free sex, (4) difficult to start because of taboo and shame, (5) need support from health worker. The study reveals that sexual education is limited and need to be increased. It is essential that Indonesian parents become better informed and skilled, so that they may be involved in the sexual education of adolescent start from their family. Index Terms— sexual education, adolescent, parents experience