Early stress during NICU stay and parent-reported health-related quality of life after extremely preterm birth: an exploratory study with possible targets for early intervention.

Introduction: The association between neonatal intensive care unit (NICU) related stress in preterm infants and their health-related quality of life (HRQoL) in the first year following preterm birth remains unexplored. Understanding this association is crucial for enhancing preventive and supportive measures for infants and parents within and beyond the NICU. Methods: From a single center observational cohort study, we included infants with gestational ages below 30 weeks and/or birth weights under 1,000 grams. HRQoL was quantified using the Infant Quality of Life Instrument (IQI) at 3-, 6-, 9- and 12-months corrected age, covering seven domains. NICU stress was quantified using the Neonatal Infant Stressor Scale (NISS) for the first week of life. We performed Spearman's correlation analyses to test this association. Results: Of the 45 included infants, the IQI was completed for 27 (60%) at 3, 15 (33%) at 6, 14 (31%) at 9 and 15 (33%) at 12 months. The HRQoL sum scores were related to neonatal stress at 9 and 12 months (ρ = 0.643 and 0.591, p = 0.013 and p = 0.019, respectively) but not at 3 and 6 months (ρ = -0.001 and -0.077 respectively, p > 0.05). Higher NICU stress tended to be associated with more respiratory and mood problems throughout the first year. Discussion: From a parental perspective on infant HRQoL, extremely preterm infants with higher stress exposure show more problems in the second half-year of life, mainly breathing and possibly mood-related problems. This knowledge may help improve our neonatal care, both during NICU stay and in follow-up clinics, by implementing targeted interventions.

Parental Perspectives on Early Life Screening and Genetic Testing for ASD: A Systematic Review.

Autism Spectrum Disorder (ASD) is a prevalent neurodevelopmental condition for which no prenatal or early life screening tests exist. Early life recognition of ASD is key to accessing behavioral intervention when brain plasticity is at its peak. The purpose of our study was to systematically review the literature researching parental perspectives around early life screening for autism and specifically genetic testing. A total of 30 studies were included and coded against the following variables: parental characteristics, child characteristics, research design, data collection and data analysis methods, type of early screening, and parental perspectives towards early life screening and genetic testing. The outcomes of the review showed that caregivers need more knowledge about ASD genetic testing, they are in general in favor of early life screening, and they prefer to access ASD genetic testing and early behavioral intervention as early as possible. As emerging genetic tests are likely to increase diagnostic accuracy for ASD in the near future, it is of paramount importance for research and practice to embrace parental needs and preferences. Healthcare providers can be pivotal in empowering parents to make informed decisions through clear, compassionate communication and counseling. Future research should seek to fill in an essential gap in the literature, which is to capture parental views from a diverse population.

Prenatal Workshops and Support Groups for Prospective Parents Whose Children Will Need Neonatal Care at Birth: A Feasibility and Pilot Study.

Introduction: Support groups in neonatal intensive care units (NICUs) are beneficial to parents. The usefulness of prenatal support groups for prospective parents who will have a newborn requiring admission to the NICU has never been investigated. Methods: We assessed the needs of NICU parents regarding topics they would have wished to discuss prenatally and developed the content of a prenatal support workshop. A standardized survey prospectively evaluated the perspectives of pregnant women admitted to a high-risk pregnancy unit who participated in the resulting workshops. Results: During needs assessment, 295 parents invoked themes they would have wished to discuss antenatally: parental guilt, future parental role, normalizing their experience/emotions, coping with many losses, adapting to their new reality, control and trust, information about the NICU, technology around the baby, common neonatal interventions, the NICU clinical team, and the role of parents in the team. These findings were used to develop the workshop, including a moderator checklist and a visual presentation. Practical aspects of the meetings were tested/finalized during a pre-pilot phase. Among 21 pregnant women who answered the survey (average gestational age 29.3 weeks), all agreed that the workshop was useful, that it made them feel less lonely (95%), that exchanges with other women were beneficial (95%) and gave them a certain amount of control over their situation (89%). All answers to open-ended questions were positive. Conclusion: Prenatal educational/support workshops provide a unique and useful means to support future NICU parents. Future investigations will explore whether these prenatal interventions improve clinical outcomes.

Butterflies and Ribbons: Supporting Families Experiencing Perinatal Loss in Multiple Gestation.

Introduction: In neonatology, multiple pregnancies are common. Unfortunately, it is not rare for one baby to die. Communication with parents in these circumstances has been demonstrated to be sub-optimal. Methods: Two educational programs were evaluated with pre- and post-course surveys, questionnaires administered to participants, and audits. Results: In the online Butterfly project (UK; n = 734 participants), all participants reported that the training exceeded or met their expectations, 97% reported they learned new skills, and 48% had already applied them. Participants expressed gratitude in their open-ended answers: "I feel a lot more confident in supporting parents in this situation". In the Ribbon project (workshop for neonatal clinicians, Quebec; n = 242), 97% were satisfied with the training and reported feeling more comfortable caring for bereaved parents. Knowledge improved pre-post training. Audits revealed that 100% of cases were identified on the incubator and the baby's/babies' admission card, all changed rooms after the death of their co-twin/triplet, and all had the name of their co-twin/triplet on the discharge summary. All clinicians (55) knew what the ribbon symbol meant when asked during surprise audits at the bedside. Conclusion: Different educational strategies to optimize communication with families after the perinatal loss of a co-twin are appreciated and have a positive impact.

Parental Awareness, Knowledge, and Attitudes Regarding Current and Future Newborn Bloodspot Screening: The First Report from Thailand.

Newborn screening (NBS) is a public health service that is used to screen for treatable conditions in many countries, including Thailand. Several reports have revealed low levels of parental awareness and knowledge about NBS. Because of limited data on parental perspectives toward NBS in Asia and the differences in socio-cultural and economic contexts between Western and Asian countries, we conducted a study to explore parental perspectives on NBS in Thailand. A Thai questionnaire to assess awareness, knowledge, and attitudes regarding NBS was constructed. The final questionnaire was distributed to pregnant women, with or without their spouses, and to parents of children aged up to one year who visited the study sites in 2022. A total of 717 participants were enrolled. Up to 60% of parents were identified as having good awareness, which was significantly associated with gender, age, and occupation. Only 10% of parents were classified as having good knowledge relative to their education level and occupation. Providing appropriate NBS education should be initiated during antenatal care, focusing on both parents. This study noted a positive attitude toward expanded NBS for treatable inborn metabolic diseases, incurable disorders, and adult-onset diseases. However, modernized NBS should be holistically evaluated by multiple stakeholders in each country because of different socio-cultural and economic contexts.

Long Term Impact of Age at Implantation on Quality-of-Life Outcomes in Cochlear Implant Recipient Children.

Cochlear implantation (CI) is used in management of children with bilateral severe to profound sensorineural hearing loss (SNHL). Recently, due to technological advancements, more and more infants and toddlers are undertaking the CI. The age at implantation may have an impact on CI outcomes. The primary aim of this study was to determine the long-term impact of 'age at implantation' on Health Related Quality of Life (HRQoL) outcome post-CI. In this prospective study at a tertiary care centre, we evaluated 50 CI recipient children from 2011 to 2018. Group A consisted of 35 (70%) children who received CI at less than or equal to 5 years of age and Group B with 15 (30%) children who underwent CI at more than 5 years of age. Following CI, all children received auditory-verbal therapy and thereafter we evaluated their long-term HRQoL outcomes at 5 years post-CI. Children were assessed by Nijmegen Cochlear Implant Questionnaire (NCIQ) and Children with cochlear implants: parental perspectives-questionnaire (CCIPPQ). There were significantly improved HRQoL outcomes (with an increase of 11.7% in mean NCIQ and 11.4% in mean CCIPPQ scores) at 5 years post-CI in CI recipients of age group '5 years or less' as compared to those who underwent CI at 'more than 5 years' age [P value < 0.05 for both the mean NCIQ scores and mean CCIPPQ scores respectively]. However, for children with 'more than 5 years' age at implantation, mean NCIQ and CCIPPQ scores were still more than 80% of maximum achievable NCIQ and CCIPPQ scores. In this study, CI recipient children who were implanted at less than or equal to 5 years of age were found to have significantly improved HRQoL outcomes at 5 years post-CI. Hence, it seems desirable to provide CI at an early age. However, even in children who received CI at more than 5 years of age, there was a substantial enhancement in HRQoL outcomes and CI was still effective in these children. Hence, knowledge of 'age at implantation' may provide reasonable assistance in predicting the HRQoL outcomes and optimal counseling of parents and families of CI candidates.

Decision-making for extremely preterm infants with severe hemorrhages on head ultrasound: Science, values, and communication skills.

Severe intracranial hemorrhages are not rare in extremely preterm infants. They occur early, generally when babies require life-sustaining interventions. This may lead to ethical discussions and decision-making about levels of care. Prognosis is variable and depends on the extent, location, and laterality of the lesions, and, importantly also on the subsequent occurrence of other clinical complications or progressive ventricular dilatation. Decision-making should depend on prognosis and parental values. This article will review prognosis and the uncertainty of outcomes for different lesions and provide an outline of ways to conduct an ethically appropriate discussion on the decision of whether to continue life sustaining therapy. It is possible to communicate in a compassionate and honest way with parents and engage in decision-making, focussing on personalized information and decisions, and on function, as opposed to diagnosis.

Pulmonary important outcomes after extremely preterm birth: Parental perspectives.

AIM: To describe pulmonary important outcomes (PIO) reported by parents of children born extremely preterm. METHODS: Over 1-year, all parents of children aged 18 months-7-years born <29 weeks' GA were asked regarding their perspectives. The proportion of parents who described PIO and the themes they invoked were examined. Results were analysed using mixed methods. RESULTS: Among parental responses (n = 285, 98% participation rate), 44% spoke about PIO, invoking 24 themes pertaining to NICU hospitalisation and/or long-term respiratory health. Some themes had an impact primarily on the child (e.g. exercise limitation), while the majority had an impact on the whole family (e.g. hospital readmissions). None mentioned oxygen at 36 weeks nor bronchopulmonary dysplasia (BPD). The proportion of responses invoking PIO were statistically similar between parents of children with and without BPD, born before or after 25 weeks or with birthweight < or ≥750 g. PIO were more likely to be mentioned in males and among those readmitted for respiratory problems. CONCLUSION: Parents describe many PIO, most related to the functional impact of lung disease on their child (and family), rather than the diagnosis of BPD itself. Most of these PIO are not primary outcomes in large neonatal trials nor collected in neonatal databases.

German newborn screening for Cystic fibrosis: Parental perspectives and suggestions for improvements.

PURPOSE: Cystic fibrosis (CF) was added to the German newborn bloodspot screening (NBS) panel in 2016. This study assesses parental perceptions of CF-NBS and confirmatory testing. METHODS: Prospective questionnaire-based survey administered to parents of children with positive CF-NBS over 40 months after initiation of CF-NBS in Southwest Germany. Parental perceptions were compared to results from Bavaria and Switzerland. RESULTS: Questionnaires with 29 standardized questions were sent to 343 families with children born between October 2016 and January 2020. A total of 178 (51.9%) replied. Although required by law, only a minority were informed about CF-NBS by a physician. The information provided about NBS was sufficient for 78% of parents. Regarding the information about positive CF-NBS, 52.9% were satisfied but the majority expressed negative emotions (89.5%). While most of these were resolved after confirmatory diagnostics, 17% of parents of children with false-positive CF-NBS and 66.7% of children confirmed with CF remained anxious. Waiting time for sweat testing was >3 days in 56.1%, considerably longer than in more centralized screening systems. Parents who waited for a maximum of 3 days were significantly more satisfied. 70.7% of parents were satisfied with the information given during confirmatory diagnostics and 91.4% were satisfied with participating in CF-NBS. CONCLUSIONS: CF-NBS stands in high regard with parents. Smooth organization, timely initiation of confirmatory testing, and professional communication are most important to limit parental anxiety. A more centralized system of confirmatory diagnostics appears advantageous in several regards as it reduces time from positive NBS to final diagnosis and increases parental satisfaction.

Guilt and Regret Experienced by Parents of Children Born Extremely Preterm.

OBJECTIVES: To explore decisional regret of parents of babies born extremely preterm and analyze neonatal, pediatric, and parental factors associated with regret. STUDY DESIGN: Parents of infants born <29 weeks of gestational age, aged between 18 months and 7 years, attending neonatal follow-up were enrolled. Hospital records were reviewed to examine morbidities and conversations with parents about levels of care. Parents were asked the following question: "Knowing what you know now, is there anything you would have done differently?" Mixed methods were used to analyze responses. RESULTS: In total, 248 parents (98% participation) answered, and 54% reported they did not have regret. Of those who reported regret (n = 113), 3 themes were most frequently invoked: 35% experienced guilt, thinking they were responsible for the preterm birth; 28% experienced regret about self-care decisions; and 20% regretted decisions related to their parental role, generally wishing they knew sooner how to get involved. None reported regret about life-and-death decisions made at birth or in the neonatal intensive care unit. Impairment at follow-up, gestational age, and decisions about levels/reorientation of care were not associated with regret. More mothers reported feeling guilt about the preterm birth (compared with fathers); parents of children with severe lesions on ultrasonography of the head were less likely to report regret. CONCLUSIONS: Approximately one-half of the parents of infants born extremely preterm had regrets regarding their neonatal intensive care unit stay. Causes of regret and guilt should be addressed and minimized.

A multicentre Canadian survey of caregiver perspectives on COVID vaccine-related pain and stress for their family.

Background: Caregiver hesitancy for their children to receive the COVID-19 vaccine remains due to concerns regarding safety and efficacy, but also due to fear of vaccine administration-related pain and distress. Study objectives were to determine caregivers' perceptions regarding both their personal and child's COVID-19 vaccine administration-related stress and fear and relate this to their likelihood to allow their child to receive COVID-19 vaccinations. Methods: This study was a secondary data analysis of a multicentre, cross-sectional survey of caregivers presenting to four Canadian pediatric emergency departments. Caregivers were surveyed between December 2020 and March 2021 and completed a digital survey on their own smartphones. Results: 331 caregivers responded to the survey (mean age 39.9 years [SD 7.71]); 74.2% (245/331) were mothers. Children's mean age was 8.8 years [SD 5.4]; 49.8% (165/331) were female. 64.1% (209/326) of caregivers were willing to vaccinate their child against COVID-19, while 35.9% (117/326) were not. Greater perceived COVID-19 vaccine administration-related pain (0.88 [0.80; 0.95], p = .003) and stress (0.82 [0.76; 0.89], p = <.001) for their child as well as greater perceived personal stress with their own COVID-19 vaccine administration (0.81 [0.75; 0.88], p = <.001) were associated with caregivers being less likely to vaccinate their child. Conclusions: During the time period between COVID-19 pandemic waves 2 and 3, and after the vaccine had been federally approved for adults, one-third of Canadian caregivers surveyed reported being unwilling to vaccinate their child against COVID-19 in the future. Managing children's and caregivers' vaccine administration-related fear and stress may improve vaccine uptake for children.

Parental perspectives of home-schooling of children with special educational needs and disabilities during the COVID-19 pandemic: a review.

The purpose of this paper is to review recent literature on parental perspectives of the impact of the COVID-19 pandemic on the home-schooling of children with special educational needs and disabilities, as well as to consider implications for their education and well-being. Eleven papers were reviewed, published between 2020 and 2021, selected according to a systematic protocol from three widely used online databases. Analysis of the reviewed papers found that transitioning to home-schooling during the pandemic had negative consequences for most of the children, as well as for their parents, though a small but significant number reported positive consequences. Three key areas of concern were identified in the analysis: balancing home-schooling with parent work activities; parent relationships with schools and support services and agencies and home-schooling effects on the well-being and mental health of parents and children.

"Music Therapy Was Never on the Table": Perspectives of Parents of Young Autistic Children.

Parent coaching of music interventions is emerging as a viable model for families with young autistic children, yet recruitment difficulties have been apparent in previous studies. Understanding parent perspectives of early intervention services is critical to ensure that interventions are acceptable, feasible, and effective for all family members. In order to understand possible parental resistance to this type of parent education, we explored perspectives regarding music therapy, research, and parent coaching in parents of young autistic children. Fourteen parents attended virtual focus groups to discuss their experiences. We used a descriptive phenomenological approach to uncover the essence of their experience. Our findings indicate that, contrary to our preconceptions, participants did not show negative dispositions towards music therapy, research, or parent coaching. Instead, most participants had very little or no knowledge of music therapy services. They had limited experience with research in general, and only two participants had experienced music therapy directly. Several participants had varying amounts of experience with parent participation or parent coaching outside of music therapy and shared positive experiences with it. Parents seemed willing and eager to learn music strategies to support their children and saw value in the use of music for their child's development. First-contact providers (i.e., early interventionists and diagnosticians) and social media seem influential in parents' decision-making as they navigate early intervention services soon after diagnosis. Music therapy organizations are encouraged to design targeted efforts to make information on music therapy available through these sources.

Personalized communication with parents of children born at less than 25 weeks: Moving from doctor-driven to parent-personalized discussions.

Communication with parents is an essential component of neonatal care. For extremely preterm infants born at less than 25 weeks, this process is complicated by the substantial risk of mortality or major morbidity. For some babies with specific prognostic factors, the majority die. Although many of these deaths occur after admission to the intensive care unit, position statements have focused on communication during the prenatal consultation. This review takes a more comprehensive approach and covers personalized and parent-centered communication in the clinical setting during three distinct yet inter-related phases: the antenatal consultation, the neonatal intensive care hospitalization, and the dying process (when this happens). We advocate that a 'one-size-fits-all' communication model focused on standardizing information does not lead to partnerships. It is possible to standardize personalized approaches that recognize and adapt to parental heterogeneity. This can help clinicians and parents build effective partnerships of trust and affective support to engage in personalized decision-making. These practices begin with self-reflection on the part of the clinician and continue with practical frameworks and stepwise approaches supporting personalization and parent-centered communication.

Parent-Reported Motivators and Barriers to Participation in a Community-Based Intervention Designed for Children With Motor Skill Difficulties: A Qualitative Program Evaluation.

INTRODUCTION: Parents play a critical role in their child's participation in community-based intervention programs. Yet, their perspectives remain largely overlooked in the literature. This qualitative program evaluation used social cognitive theory to understand parents' motivators and barriers to participation in a community-based intervention program designed for children with motor skill difficulties. METHOD: Parents (n = 15) of children with motor skill difficulties enrolled in a community-based intervention program participated in semistructured interviews. RESULTS: Thematic analysis revealed six motivators (child needs, satisfaction, perceived impact, affordability, design, and program culture) and three perceived barriers (parent knowledge, access, and accommodations). DISCUSSION: Parents' motivators and barriers reflected a combination of personal and environmental factors consistent with social cognitive theory. This study revealed novel insight into program-related environmental motivators and barriers. Program leaders should consider ongoing evaluation and application of parental perspectives to optimize family participation and retention in community-based interventions.

End-of-life decision making in critical illness: Perspectives of Asian parents.

OBJECTIVE: To explore parents' perspectives regarding end-of-life (EOL) decisions, factors and possible barriers that influence the EOL decision making process, and to understand parental preferences for communication about EOL care in an Asian population. METHOD: A prospective questionnaire cohort study conducted in a university-based tertiary care hospital. 30 parents of children who had been admitted to general pediatric wards for acute ailments and/or were being followed up in general pediatric outpatient clinics after inpatient admissions or emergency department visits completed 30 interviewer-administered questionnaires. With the first 10 completed questionnaires, we sought feedback on the design of the four case vignettes and related questions. Responses to specific questions related to each case vignette were rated on a Likert scale. RESULTS: The majority of parents were able to comprehend and identify with the issues in the case vignettes, which allowed them to respond appropriately. Parents tended to avoid active withdrawal or withholding of life-sustaining treatment. The top three priorities for parents making EOL decisions for their children were: the chance of improvement, the presence of pain or discomfort, and information provided by healthcare staff. Parents reported that they would prefer to know immediately if their child is at risk of dying; they also preferred to get as much information as possible from the healthcare team and thought that meeting with the healthcare team before making EOL decisions was pivotal. SIGNIFICANCE OF RESULTS: Parents place highest priorities on their child's likelihood of improvement, perception of their child's pain, and information provided by healthcare professionals in making EOL decisions.

Clinical application of a scale to assess genomic healthcare empowerment (GEmS): Process and illustrative case examples.

The Genome Empowerment Scale (GEmS), developed as a research tool, assesses perspectives of parents of children with undiagnosed disorders about to undergo exome or genome sequencing related to the process of empowerment. We defined genomic healthcare empowerment as follows: perceived ability to understand and seek new information related to the genomic sequencing, manage emotions related to the diagnostic process and outcomes, and utilize genomic sequencing information to the betterment of the individual/child and family. The GEmS consists of four scales, two are primarily emotion-focused (Meaning of a Diagnosis, and Emotional Management of the Process) and two are action-oriented (Seeking Information and Support, and Implications and Planning). The purpose of this research was to provide a strategy for interpreting results from the GEmS and present illustrative cases. These illustrations should serve to facilitate use of the GEmS in the clinical and research arena, particularly with respect to guiding genetic counseling processes for parents of children with undiagnosed conditions.

Parental perspectives on inclusive education for children with intellectual disabilities in Greece.

The current study explores the parental perspectives of children with intellectual disabilities (ID) on the effectiveness of inclusive education in Greek mainstream schools. The participants were 83 parents, whose children had different degrees of ID and all of them were attending mainstream schools at the time of the study. They completed a questionnaire examining their perspectives with regard to (a) the most effective educational placement in mainstream schools (special class, mainstream class or co-teaching), (b) their satisfaction with the inclusive mainstream education, (c) their cooperation with the teachers, (d) the perceived benefits of their children's educational placement and (e) their suggestions regarding the improvement of the inclusive educational model. Results indicated that most parents of children with ID would like their child to attend a mainstream class with a co-teaching arrangement. The perceived benefits are mostly related to the development of their children's social skills. Significant considerations regarding cooperation with the teachers, lack of individualized information and guidance, administrative and organizational issues were expressed.

Parents' Views to Strengthen Partnerships in Newborn Intensive Care.

Background: Parental involvement in their newborn's neonatal intensive care reduces stress and helps with the parent-child attachment, transition to home, and future development. However, parents' perspectives are not often sought or considered when adapting family-centered care in neonatal intensive care units (NICUs). Aim: To identify what parents believe helps or hinders their involvement in their newborn's care when admitted to our Level 3B NICU. Methods: Between August and October 2018, nine mothers and one father were interviewed during three 60- to 90-min audiotaped focus groups using a semi-structured interview tool. From the content analysis of the verbatims, three reviewers identified key themes that affected how involved parents could be in their newborn's care. Results: Parents provided examples of factors that facilitated or restricted their involvement. The analysis identified themes: (1) parent-staff interactions, (2) supportive/trustworthy healthcare professionals, (3) consistency in care and caring staff, (4) family, couple, and peer support, (5) newborn status, (6) resources and education for parents, (7) the NICU environment, and (8) academic and research participation. Conclusion: We identified a conceptual framework to allow our NICU team to prioritize working strategies to strengthen parental involvement in newborn care. In addition to implementing ways to involve parents, we need to address parents' satisfaction with their participation. These findings may help other investigators explore parents' expectations toward their NICU experience.

"So, I told him to look for friends!" Barriers and protecting factors that may facilitate inclusion for children with Language Disorder in everyday social settings: Cross-cultural qualitative interviews with parents.

PURPOSE: Although researchers have explored parental perspectives on childhood speech and language disorders, this work has mostly been conducted in English-speaking countries. Little is known about parental experiences across countries. Participation in the COST Action IS1406 'Enhancing children's oral language skills across Europe and beyond' provided an opportunity to conduct cross-cultural qualitative interviews. The aims were to explore how parents construe inclusion and/or exclusion of their child and how parents involve themselves in order to facilitate inclusion. METHOD: Parents from nine countries and with a child who had received services for speech-language disorder participated in semi-structured qualitative interviews. We used thematic analysis to analyze the data. RESULTS: Two overarching themes were identified: 'Language disabilities led to social exclusion' and 'Promoting pathways to social inclusion'. Two subthemes were identified Interpersonal relationships are important and Deliberate proactiveness as stepping stones for social inclusion. CONCLUSIONS: Across countries, parents report that their children's hidden disability causes misunderstandings that can lead to social exclusion and that they are important advocates for their children. It is important that the voices and experiences of parents of children with developmental disabilities are understood and acknowledged. Parents' recommendations about how to support social inclusion need to be addressed at all levels of society.