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.

Parental Support for Speech Delay in Early Childhood in Kalisari Village, Natar District, South Lampung Regency

This study was aims to explore, describe, and analyze parent support for the speech delay early childhood. This study used to the qualitative method of the research subject is both parents of children who experience speech delay in Kalisari village. This study was used to three methods of data collection, namely observation, interviews, and documentation. The data analyze used to descriptive qualitative. Based on the results of the discussion that has been described it can be concluded that parent support that has been given to children who experience speech delay is informational support, assessment support, instrumental support, emotional social support, and real support. Of the five supports, the researchers concluded that the support often used by subjects was informational support, namely parents provided support through the provision of good advice and advice, giving instructions by installing pictures in the refrigerator so that the twins could understand the food taken and want to say food they took, and provided information by taking the twins for a walk to get a new vocabulary.

The Function of Ritualized Acts of Memory Making after Death in the Neonatal Intensive Care Unit

(1) Background: Some infants die shortly after birth, leaving both parents and nurses in grief. In the specific setting where the data were collected, the bereaved parents receive a scrapbook made by the nursing staff in the NICU, and a box made by a local parent support group. Making a scrapbook and a box when an infant dies in the NICU can be regarded as ritualized acts. The aim of this study is to explore the functions of these ritualized acts of making a scrapbook and memory box when an infant dies in the NICU. (2) Methods: Focus group interviews were performed with experienced nurses in the NICU, and with members of a parent support group. Reflexive thematic analysis was used to interpret the data. (3) Three main themes were constructed: “Making memories”, “showing evidence of the infant’s life and of the parenthood”, and “controlling chaos”. (4) Conclusions: Through the ritualized acts of making scrapbooks and boxes, nurses and members of the parent support group collect and create memories and ascribe the infant with personhood, and the parents with the status of parenthood. In addition, the ritualizing functions to construct meaning, repair loss, relieve sorrow, and offer a sense of closure for the makers of these items.

A systematic scoping review of early interventions for parents of deaf infants

Background Over 90% of the 50,000 deaf children in the UK have hearing parents, many of whom were not expecting a deaf child and may require specialist support. Deaf children can experience poorer long-term outcomes than hearing children across a range of domains. After early detection by the Universal Newborn Hearing Screening Programme, parents in the UK receive support from Qualified Teachers of the Deaf and audiologists but resources are tight and intervention support can vary by locality. There are challenges faced due to a lack of clarity around what specific parenting support interventions are most helpful. Methods The aim of this research was to complete a systematic scoping review of the evidence to identify early support interventions for parents of deaf infants. From 5577 identified records, 54 met inclusion criteria. Two reviewers screened papers through three rounds before completing data extraction and quality assessment. Results Identified parent support interventions included both group and individual sessions in various settings (including online). They were led by a range of professionals and targeted various outcomes. Internationally there were only five randomised controlled trials. Other designs included non-randomised comparison groups, pre / post and other designs e.g. longitudinal, qualitative and case studies. Quality assessment showed few high quality studies with most having some concerns over risk of bias. Conclusion Interventions commonly focused on infant language and communication followed by parental knowledge and skills; parent wellbeing and empowerment; and parent/child relationship. There were no interventions that focused specifically on parent support to understand or nurture child socio-emotional development despite this being a well-established area of poor outcome for deaf children. There were few UK studies and research generally was not of high quality. Many studies were not recent and so not in the context of recent healthcare advances. Further research in this area is urgently needed to help develop evidence based early interventions.

Validação da Career-Related Parent Support Scale numa amostra de estudantes portugueses

A Career Related Parent Support Scale (CRPSS) procura avaliar, de acordo com as principais fontes de autoeficácia, o suporte parental percebido, em quatro dimensões: modelação de carreira, suporte emocional, apoio instrumental, e persuasão verbal. No presente estudo, tivemos como objetivo apresentar os principais resultados do processo de tradução e de adaptação à população portuguesa da CRPSS, com uma amostra de 338 estudantes dos ensinos básico e secundário. Globalmente, os resultados das análises realizadas aos itens e às diferentes subescalas atestam a qualidade psicométrica da CRPSS. No que se refere à análise fatorial confirmatória (AFC), os índices de qualidade do ajustamento ao modelo em quatro fatores foram satisfatórios, embora tenha sido necessário eliminar três itens, o que parece estar de acordo com os resultados obtidos em outros estudos de validação. A CRPSS associou-se de modo significativo à autoeficácia na tomada de decisão e aos comportamentos de exploração de carreira, evidenciando a sua validade convergente. Em síntese, os bons níveis de precisão e de validade obtidos parecem suportar a utilização da versão portuguesa na avaliação do suporte parental percebido em adolescentes portugueses.