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BACKGROUND: Emotional eating is associated with adverse health outcomes in children, including elevated weight status. Currently, there is not a well-validated parent-report measure of emotional eating for young children. This study assessed the reliability and validity of the 10-item parent version of the Emotional Eating Scale Adapted for Children and Adolescents (EES-C) Short-Form. METHODS: The participants were 207 parents and 144 children from the southern United States. They completed the parent- and child-report EES-C Short-Form and responded to measures related to child eating behaviors, mood, and gratitude. RESULTS: The parent-report EES-C Short-Form demonstrated good internal consistency reliability (Cronbach's alpha = 0.94). Test-retest reliability was also supported, as evidenced by a medium correlation (ICC = 0.56, p < 0.001) between parent-rated emotional eating across two time points. Additionally, the measure demonstrated a significant correlation with a scale of emotional overeating (r = 0.25, p < 0.001)-a theoretically related construct. Supporting discriminant validity, the measure was not significantly related to a measure of parent-reported gratitude (r = 0.07, p = 0.30). A unidimensional model provided good fit for the data (CFI = 0.997, SRMR = 0.046). CONCLUSIONS: The results from the current study provide preliminary evidence supporting the reliability and validity of the parent version of the EES-C Short-Form. For the purpose of screening children in school or primary care settings, the EES-C Short-Form may be practical and helpful in identifying children who may be at risk of developing adverse health outcomes or more-severe eating disorder pathology.

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BACKGROUND: Attitudes toward childhood disability have historically focused on biomedical efforts on 'fixing'. The introduction of WHO's ICF framework for health and Canadian researchers' 'F-words' (functioning, fitness, fun, friends, family and future) have significantly changed the field. To explore whether the F-words ideas influenced parents' perspectives on their child's abilities and rehabilitation goals, this qualitative pilot study introduced the F-words to Iranian parents with a child with a developmental disability. METHODS: This study was conducted in Tabriz, Iran, in 2023, using Iranian educational F-words materials built on ideas available on the CanChild F-words Knowledge Hub. Data were collected through semistructured interviews with five mothers of children <5 years old with a developmental disability before and after attending an 'F-words Awareness Session' and analysed using thematic analysis. RESULTS: In the preinterviews, six themes (and 20 subthemes) were identified: (i) routines (5); (ii) challenges (4); (iii) parental concerns (3); (iv) child's needs and priorities (3); (v) the role of parents in satisfying needs and challenges (2); and (vi) expectations of rehabilitation (3). In the postinterview, the same six themes and four additional subthemes emerged. CONCLUSION: Findings from the pilot study showed that the intervention had an impact on the attitudes and behaviours of participants. Specifically, teaching about the F-words reduced parents' emphasis on the concept of 'normality'. Families' positive response to the 'F-words Awareness Session' indicates their openness to incorporating this approach into their daily lives. These findings highlight the potential benefits of utilizing the F-words in rehabilitation in Iran. Studies like these can serve as a foundation for developing effective strategies for integrating the F-words into existing rehabilitation practices in Iran.

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BACKGROUND: Fragile X syndrome (FXS) is the most common inherited cause of intellectual disability. Early Check, a voluntary newborn screening study, screened 18,833 newborns for FXS over ∼3 years. Exploring parental attitudes and perspectives can provide insight to the potential future acceptability of public health screening. METHODS AND PROCEDURES: Mothers of infants who received a screen positive result for FXS (n = 6) or fragile X premutation (FXPM; n = 18) were interviewed about their perceptions and experiences. OUTCOMES AND RESULTS: Mothers of children with FXS described utility in receiving information about their child, particularly to monitor for potential developmental issues and intervene early; overall mothers did not regret participating. Mothers reported various reactions to receiving the FXS or FXPM results including (1) stress and worry; (2) guilt; (3) sadness and disappointment; (4) neutrality, relief, and acceptance; and (5) confusion and uncertainty. CONCLUSIONS AND IMPLICATIONS: Despite initial reactions such as sadness, stress, and worry, mothers found value in learning of their child's presymptomatic diagnosis of FXS, particularly the anticipated long-term benefits of early diagnosis to their child's health and wellbeing. Our results indicate that professionals returning positive newborn screening results should anticipate and prepare for reactions such as parental shock, guilt, sadness, and uncertainty. Genetic counseling and psychosocial support are critical to supporting families.

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BACKGROUND: Longstanding inequities in the USA have resulted in the disproportionate impact of COVID-19 on Black Americans. Coupled with medical mistrust, COVID-19 vaccine uptake is lower in Black populations. METHODS: We sought to understand the perspectives of Black parents on the COVID-19 pandemic, COVID-19 vaccination for themselves and their children, and trust with the medical community. Using qualitative methodology, we conducted in-depth semi-structured in-person interviews of Black parents of children admitted to the inpatient pediatric units in our tertiary academic medical center in Connecticut from July to November 2021. We used the grounded theory approach, and the constant comparative method until saturation was reached. RESULTS: We interviewed 20 parents who identified as Black; 50% were vaccinated against COVID-19. The following 5 themes and sub-themes emerged: (1) mixed feelings influenced COVID-19 vaccine decision-making ranging from much needed relief and feelings of uncertainty, distrust, and fear; (2) COVID-19 vaccine uptake was influenced by individual and family's health concerns and job or school mandates; (3) deferring the COVID-19 vaccine was influenced by the perception of risk and concerns about vaccine integrity; (4) institutional mistrust within the Black community bred by systemic racism influenced vaccine decision-making; and (5) conflicted feelings about the COVID-19 vaccine for their child. CONCLUSION: Our findings reiterate the complexities around vaccine decision-making and underscore the importance of recognizing the pervasive influence of institutional mistrust when counseling Black families about the COVID-19 vaccine.

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AIMS: To explore how parents experienced their child with delirium and how parents viewed our delirium management bundle. DESIGN: We conducted a qualitative exploratory descriptive study using semi-structured individual or dyad interviews. METHODS: Twelve semi-structured interviews with 16 parents of 12 critically ill children diagnosed with delirium in a paediatric intensive care unit were conducted from October 2022 to January 2023 and analysed through a reflexive thematic analysis. FINDINGS: We generated five themes: (1) knowing that something is very wrong, (2) observing manifest changes in the child, (3) experiencing fear of long-term consequences, (4) adding insight to the bundle, and (5) family engagement. CONCLUSION: The parents in our study were able to observe subtle and manifest changes in their child with delirium. This caused fear of lasting impact. The parents regarded most of the interventions in the delirium management bundle as relevant but needed individualization in the application. The parents requested more information regarding delirium and a higher level of parent engagement in the care of their child during delirium. IMPACT: This paper contributes to understanding how parents might experience delirium in their critically ill child, how our delirium management bundle was received by the parents, and their suggestions for improvement. Our study deals with critically ill children with delirium, their parents, and staff working to prevent and manage paediatric delirium (PD) in the paediatric intensive care unit. REPORTING METHOD: The consolidated criteria for reporting qualitative research guidelines were used to ensure the transparency of our reporting. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution to the research design. WHAT DOES THIS PAPER CONTRIBUTE TO THE WIDER GLOBAL COMMUNITY?: - It increases awareness of the parent's perspective on PD in critically ill children. - It shows how PD might affect parents, causing negative emotions such as distress, frustration, and fear of permanent damage. - It shows that the parents in our study, in addition to the care bundle, requested more information on delirium and more involvement in the care of their delirious child.

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This paper is part two of a series of papers written by the mothers of Neonatal Intensive Care Unit (NICU) graduates. The companion paper, "Parent Perspectives: Part 1-Considerations for Changing the NICU Culture", considers all aspects of the NICU experience and provides recommendations for interventions and improvements from a life-course perspective while families are in the NICU. In part two, the focus is the transition home post-NICU stay. The time after NICU discharge is a critical and sensitive developmental period for NICU babies and their families, and an important life course transition. This paper provides a parent's perspective of how to improve the transition home post-NICU stay. Our perspectives draw on the Life Course Health Development approach, which regards health as an active process that is developed over time based on a person's internal biologic and physiologic systems, their external environment and circumstances, and the interactions or relationships between them. This paper describes a collaborative care model where parents and their healthcare teams work together to develop shared care plans. It also describes how we can build trust and family capacity to support long-term care, ensure family well-being, and link families to needed resources and support that can ease the transition from the NICU back to the home and optimize family health trajectories.

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PURPOSE: This study reported the experiences of New Zealand caregivers of children with language and literacy difficulties in having their child's needs identified. METHOD: The participants were 14 mothers of children with idiopathic language and literacy difficulties, recruited through social media language and literacy difficulties support groups. Two mothers identified as Maori and 12 New Zealand European. Data were collected through semi-structured interviews. A phenomenological approach using reflexive thematic analysis was used. RESULT: These mothers had learned about language, literacy, and the education system to advocate for their child and perceived a lack of knowledge on the part of schools. Nearly all had sought a diagnosis, with understanding and access to support reported as positive consequences and stigma as a negative. Some preferred labels emphasising difference rather than disorder, consistent with traditional Maori and neurodiversity views. The mothers described their experience as a fight, due to their concerns being ignored, the need to pay for private diagnostic assessments and difficulty accessing services. They appreciated assessors who gave useful, comprehensible information and supported school liaison. CONCLUSION: These mothers wanted improved teacher training and publicly funded diagnostic assessment services to improve access to best practice language and literacy instruction for their children.

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Neurodevelopmental challenges in children born very preterm are common and not improving. This study tested the feasibility of using Evidence-based Practice to Improve Quality (EPIQ), a proven quality improvement technique that incorporates scientific evidence to target improving language abilities in very preterm populations in 10 Canadian neonatal follow-up programs. Feasibility was defined as at least 70% of sites completing four intervention cycles and 75% of cycles meeting targeted aims. Systematic reviews were reviewed and performed, an online quality improvement educational tool was developed, multidisciplinary teams that included parents were created and trained, and sites provided virtual support to implement and audit locally at least four intervention cycles of approximately 6 months in duration. Eight of ten sites implemented at least four intervention cycles. Of the 48 cycles completed, audits showed 41 (85%) met their aim. Though COVID-19 was a barrier, parent involvement, champions, and institutional support facilitated success. EPIQ is a feasible quality improvement methodology to implement family-integrated evidence-informed interventions to support language interventions in neonatal follow-up programs. Further studies are required to identify potential benefits of service outcomes, patients, and families and to evaluate sustainability.

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LAY ABSTRACT: Parents might have problems in getting support services for their autistic child due to certain barriers. However, there might also be things that can ease or facilitate parents' access to support services. In this study, New Zealand parents were asked about their experiences in getting support services for their autistic child. We also looked at differences in reported barriers and facilitators based on several demographic factors with a focus on family level of financial resourcing. A total of 173 parents completed a survey. The results suggested that parents experienced several barriers, particularly related to service pathways. Facilitators were also experienced, predominantly related to providers. Financial resourcing predicted the number of parent-reported barriers. Both lower level of family financial resourcing and having a non-binary child predicted parents' rating of the extent of barriers. Child age and level of speech were predictors for reports of experiencing a higher number of facilitators, with parents of younger children or of non-speaking autistic children reporting a greater number of facilitators. We discuss how these results may be useful to support service delivery and identify areas for future research.

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Parents of children with both cortical visual impairment (CVI) and complex communication needs offer unique perspectives on their children's journeys to receiving proper diagnoses, supports, and interventions, such as augmentative and alternative communication (AAC). This study explored the lived experiences, supports, and barriers identified by parents through a qualitative phenomenological approach. Nine parents of children with both CVI and complex communication needs were interviewed virtually. Results indicated five themes descriptive of the parents' experiences: Challenges Piecing Together a CVI Diagnosis; Dealing with Low Expectations of Others; Parents Empowered to Take Action; Guessing Game to Determine Appropriate AAC to Accommodate CVI; and Aligning Professional Practice with Parent Priorities. Whereas some of these themes echoed the experiences of parents of children with complex communication needs (such as those with cerebral palsy) who were not specifically diagnosed with CVI, other themes were unique to this set of parents including the uncertainty of AAC design and intervention given the challenges of CVI and the necessity of more than one way for children to communicate given their visual challenges. This study highlighted the dire need for continued investigation to determine effective AAC interventions for individuals with CVI.

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BACKGROUND: This exploratory study examined parents' experiences with "Growing at Home" (G@H), a remote patient monitoring program for stable infants discharged from the Neonatal Intensive Care Unit (NICU) with continued need for nasogastric tube feeding. METHODS: We used classical content analysis to identify and refine emergent themes from 13 semi-structured key informant interviews. RESULTS: The primary emergent theme was the desire to return to normalcy, which was expressed as a primary motivator for participating in G@H. Parents reported G@H assisted them in transitioning from the NICU's highly medicalized setting to establishing a new normal with incorporation of their infant into their lives and families. Parental preparation is important, as some parents experienced challenges that indicate the program may not be suitable for all families. CONCLUSIONS: Parental experiences offer insight into benefits and challenges of early discharge from the NICU and highlight opportunities to support families beginning in the NICU and as they transition home.

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OBJECTIVES/PURPOSE: Childhood cancer survival brings continued mental and physical health challenges both for the child and for the family. In this study, we investigated how parents viewed their roles in their child's health and symptom monitoring during the survivorship period. METHODS: Twenty-one parents of childhood cancer survivors (n = 18 mothers; parent mage = 49.78 years, child mage = 18.50 years; range = 12-25 years), whose children were at least one year off-treatment (m = 3.67 years; SD = 2.25; various diagnoses), completed semi-structured interviews. Interviews were recorded, transcribed, and analyzed using reflexive thematic analysis. RESULTS: Analyses generated three themes which reflect roles that parents may adopt in the context of monitoring symptoms in their childhood cancer survivor. "Vigilant Mama and Papa" (theme 1) described parents who expressed a strong sense of responsibility for protecting their child's health during survivorship resulting in careful monitoring of their child's symptoms and health. "Pragmatic Mamas and Papas" (theme 2) described parents who adopted an approach to symptom and health monitoring that emphasized moving past cancer and focusing on the future. Finally, "Encouraging Mamas and Papas" (theme 3) described parents who focused on educating and preparing their child to develop an autonomous approach to health and symptom self-monitoring as they transitioned to survivorship and adulthood. CONCLUSION: Parents take on varying roles in monitoring their child's symptoms and health after finishing childhood cancer treatment. IMPLICATIONS FOR CANCER SURVIVORS: Understanding the ways in which parents continue to be involved in their child's cancer journey helps researchers develop interventions to support dyadic coping in survivorship.

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LAY ABSTRACT: Families from underrepresented ethnic or racial groups and those with limited financial resources could experience more difficulty in accessing support services for their autistic child due to certain types of barriers. We searched academic journals, websites, and other sources for studies which looked at what barriers might be present for such families and what might help families access support services for their autistic child. The search found 18 studies. Results from each study were examined and coded into themes. Parents reported that accessibility, diversity of support services, and stigma influenced their experiences with support services. We discuss what these findings might mean for future research and for service delivery.

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PURPOSE: Parents of children with autism spectrum disorder often report poorer sleep compared to parents of typically developing children. When parents do not obtain enough quality sleep, functioning may be compromised placing the onus of care on already stressed parents. However, improving sleep duration may not improve sleep quality and is not always feasible. This study aimed to measure sleep quality in parents of children with autism spectrum disorder, determine if stress and children's sleep are associated with sleep quality and whether resources, appraisals, and coping moderate these relationships. MATERIALS AND METHODS: Multivariable regression was used to determine the effects of stress and children's sleep problems on sleep quality and test modifying effects. RESULTS: Mean (SD) Pittsburgh Sleep Quality Index scores was 8.81 (3.76), with 77.6% of parents scoring above the clinical cut-off. Mean (SD) Children's Sleep Habits Questionnaire scores was 54.03 (8.32), with 96.3% of parents rating their child's sleep above the clinical cut-off. Children's sleep was the only significant predictor and none of the expected effect modifiers were significant. CONCLUSION: Children's sleep may be an important target to improve parent sleep quality but requires systematic assessment with interventional research. Implications for rehabilitationBoth parents and their 4-10-year-old children with ASD experience high levels of sleep disturbances.Clinicians can start the conversation early with parents about their children's sleep by providing them with information to increase awareness and recognize healthy sleep habits in their children.Clinicians are important in the assessment, management, and evaluation of pediatric sleep problems, which may have significant spillover effects on parents of children with ASD.There is a need for more resources and training to be available to clinicians to assess children and their parents for sleep problems, which could extend beyond the assessment of sleep and consider parent's daytime functioning and mental health.

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PURPOSE: To elicit preliminary pediatrician and parent perspectives on physical activity (PA) counseling and identify opportunities for improvement. DESIGN: Mixed methods, including a cross-sectional survey and semi-structured interviews. SETTING AND PARTICIPANTS: Primary care pediatricians (N = 73; 40% response rate) within a single large healthcare system and parents of students (N = 20) participating in a local school-based PA program in eastern Massachusetts. METHODS: Electronic survey of pediatricians assessing opinions of American Academy of Pediatrics (AAP) PA guidelines and potential PA promotion tools; semi-structured qualitative interviews with parents assessing overall discussion, education, and recommendations relating to PA. ANALYSIS: We report descriptive statistics for survey items and bivariate analyses comparing responses by physician characteristics. We performed thematic analysis of qualitative interviews and present results through an implementation science framework. RESULTS: In this preliminary study, pediatricians reported adoption, appropriateness, and lower perceived effectiveness of PA counseling. School-based programs and educational materials were most often chosen as PA promotion tools. Responses varied by pediatrician characteristics. While parents reported satisfaction, opportunities for improvement included connections with community resources and continued conversations with the child about PA. CONCLUSIONS: Pediatricians and parents highlighted gaps in PA counseling in primary care. While results are preliminary given small sample size, this study provides actionable targets to support PA promotion as a preventive health priority in this setting.

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This study explores Korean-American parents' perceptions on successful transition to kindergarten (TTK) for their child on the autism spectrum. It further examines challenges experienced during this process, and possible predictors for their challenges. Findings from an online survey (N = 212) indicate that participants consider their child's behavioral readiness and cooperation with teachers as the most important school readiness skills for successful TTK. They further consider building positive relationships with teachers and providing support at home as the most important support parents could provide during this process. Moreover, the child being a vocal communicator, higher income and parent's educational level were found to buffer against their reported challenges, while first-generation immigrant status and restrictive school placement were found to predict more challenges.

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During the COVID-19 pandemic, significantly fewer of New York City's (NYC's) 1.1 million public school children participated in emergency grab-and-go meals-heightening the risk of inadequate nutrition security for many of NYC's most vulnerable residents. This study sought to examine student families' facilitators and barriers to participation in the grab-and-go meal service and their experiences with pandemic-electronic benefit transfer (P-EBT) funds, a cash benefit distributed when schools were closed. We recruited 126 parents of children in NYC public schools who had participated in the grab-and-go service. Using opened-ended questions, we interviewed 101 parents in 25 1-h online focus groups. We identified four main themes which broadly impacted school meal participation: communication, logistics, meal appeal, and personal circumstances. Key facilitating subthemes included clear communication, ease of accessing sites, and high variety. Key sub-themes negatively impacting participation included limited communication and low meal variety. Accurate, timely communication; easily accessible distribution locations; and convenient distribution times could have increased participation and satisfaction. For P-EBT, parents welcomed the funds and used them readily, but some experienced difficulties obtaining payments. The simultaneous inclusion of community-based research in the evaluation of emergency feeding programs could improve future outcomes for school meal participation and electronic benefits.

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Pompe disease was added to the United States recommended uniform screening panel in 2015 to avoid diagnostic delay and implement prompt treatment, specifically for those with infantile-onset Pompe disease (IOPD). However, most newborns with abnormal newborn screening (NBS) for Pompe disease have late-onset Pompe disease (LOPD). An early diagnosis of LOPD raises the question of when symptoms will arise which is challenging for parents, patients, and providers managing an LOPD diagnosis. This study aimed to characterize mothers' experiences of their child's LOPD diagnosis and medical monitoring. A qualitative descriptive approach was chosen to gain an in-depth understanding of parental experiences. Eight mothers were interviewed about their experiences with positive NBS and diagnosis, experiences with living with the diagnosis, and experiences with medical monitoring. Interview transcripts were analyzed through conventional content analysis. Negative emotions like fear were more frequent with communication of NBS results. Participants expressed uncertainty surrounding age of symptom onset and the future. The medical monitoring experience increased worry but participants expressed that being vigilant with management reassured them. Parental emotions shifted to thankfulness and reassurance with time and education. These findings can provide guidance to providers about the psychosocial implications of receiving positive NBS results and an LOPD diagnosis.

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Despite the potential positive impact of augmentative and alternative communication, the literature suggests that many individuals with disabilities experience barriers in developing communication skills and access to appropriate supports. Parents can provide valuable insight into the barriers and facilitators experienced by their children with complex communication needs. Previous studies exploring parent perspectives of the complex communication needs of children with various disabilities have revealed similarities and differences in experiences. This supports the need to examine the barriers and facilitators experienced by different populations, including individuals with Koolen de Vries syndrome (KdVS). As a newly identified syndrome, information on individuals with KdVS is limited, and studies examining parent experiences in supporting the communication needs of children with KdVS have not been conducted. This study obtained parents' perspectives regarding the communication barriers and facilitators experienced by their children with KdVS. Fifteen parents participated in one of two focus group sessions. The data were analyzed through qualitative content analysis, resulting in 13 categories discussed in relation to previous research and conceptual frameworks. Research and practical implications for developing a deeper understanding of the barriers experienced by children with KdVS are proposed.

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Adolescence is a prime developmental period to explore human-pet relationships, particularly given that teens are often relying less on their families, and more on other attachment figures such as peers and pets. However, most research on pet companionship is conducted with adults and young children. Moreover, lived experiences around having pets in households with adolescents are underexplored, particularly from parents' perspectives. This qualitative interview study of 31 parents/guardians in the Northeast U.S. explored perceptions of the benefits and challenges of having pets for their adolescent's well-being as well as how adolescents affected their pet's well-being. Our three main themes for perceived benefits of pets included social (e.g., reducing anxiety), physical (e.g., screen time companionship), and emotional (e.g., regulation of difficult emotions such as anger, loneliness). Challenges to adolescent well-being included such social topics as family tension around unevenly shared responsibilities, physical themes such as problematic animal behaviors, and emotional themes related to grieving the passing of pets. We offer a developmental systems approach to understanding pets within adolescent families, noting future directions for developing family interventions to improve pet-adolescent interactions given the demands of child and pet upbringing during adolescence.