Parental Resources Research Articles

Development and evaluation of an educational resource for parents of children with 22q11.2 deletion syndrome about the psychiatric manifestations of the condition.

Parents of children with 22q11.2 deletion syndrome (22q11DS) report concern about the psychiatric manifestations of the condition, but typically receive little information about this in clinical encounters and instead find information about it elsewhere. We developed an educational booklet about the psychiatric manifestations of 22q11DS and assessed its utility among parents of children with the condition. First, six parents of individuals with 22q11DS completed cognitive interviews to review an established generic booklet about the genetics of psychiatric conditions-and to suggest 22q11DS-specific adaptations. We used these suggestions to develop a novel booklet specific to psychiatric conditions and 22q1DS. Then, before and 1-month after reading the novel 22q11DS-specific online booklet, 73 parents of children with 22q11DS (with/without psychiatric conditions) completed validated scales (measuring empowerment, stigma, intolerance of uncertainty), an adapted version of a scale measuring worry about their child developing psychiatric illness, and purpose-designed items assessing perceptions of understanding of 22q11DS and mental illness, confidence in recognizing early signs, etc. After reading the 22q11DS online booklet, participants' feelings of empowerment increased (p = 0.002), while feelings of worry about their child developing psychiatric illness decreased (p = 0.05), and they reported better understanding 22q11DS and mental illness, and increased confidence in recognizing early warning signs. There is potential benefit in broadly distributing this educational booklet to parents of children with 22q11DS.

Parental perceptions of social and emotional well-being of young children from Australian military families.

Many Australian Defence Force (ADF) and Veteran families are affected by the stressors of Defence family life, including frequent and prolonged parental deployments, and frequent relocations. To address a gap in information about Defence and Veteran (hereafter Defence) parents' knowledge, confidence and resources to support their young children's well-being and build their resilience. This study used a mixed methods design to explore Defence parent's perceptions of their young children's (aged 2-8 years) social and emotional well-being and understanding of their children's responses to unique stressors as well as their confidence in providing support. Data from 41 parents were available. Overall, parents reported positive well-being evaluation of their children. However, just over a third of parents also reported that their children rarely cope well on two indicators combined (adapting to new situations and sharing negative emotions with others). Significantly, more than half of the parents (61%) were only partially confident in their ability to assist their children to cope with unique stressors in military families. Qualitative data provided further insights into children's struggle with relocations and parental absence and the challenges parents face in supporting them. Parents reported having limited access to effective age- and culturally appropriate resources to support their young children. In a first-of-its kind study, we found that Australian Defence parents reported their young children were coping on most of the key well-being indicators. However, awareness of currently available supports for children remains a barrier as well as access to contextualised, age- and culturally appropriate resources are lacking. There is a need for access to free, quality, online, research-based Australian resources to support young children from Defence families, especially for those living in regional and rural locations and are less likely to have access to mental health and other specialist supports.

A co-designed online education resource on gastrostomy feeding for parents and caregivers to support clinical care.

Children with complex needs and severe disability may undergo gastrostomy insertion to support feeding difficulties. Parent education programs are critical components of clinical care pathways but there is little information on parent-reported educational needs. This study describes the collaborative process that yielded a resource to assist parents considering gastrostomy tube placement for their children, and the evaluation of the resource. A qualitative descriptive study was conducted to identify parent needs for gastrostomy education. Based on these data and co-designing with parents with a child with gastrostomy tubes, an online resource comprising video and written materials was developed. Twenty parents then evaluated its suitability for parent learning. Data describing parent needs were coded into categories which represented the gastrostomy "journey" - Decision Making, Hospital Stay and Living with Gastrostomy. Called Nourish, the gastrostomy training resource comprised 19 videos and 18 accompanying worksheets. Twenty parent caregivers rated it highly for its support for learning, confidence building and planning. The process that created Nourish generated a useful resource for parents considering or managing gastrostomy tube feedings for their children. Positive feedback suggests that this approach could be a valuable adjunct to clinical care.

The experiences of families of children with cancer during the COVID-19 pandemic: A qualitative exploration.

The COVID-19 pandemic posed new challenges to physical and psychological well-being. Families with pediatric cancer patients were particularly vulnerable due to changes like children staying at home, hospital policy shifts, and caring for an immunocompromised child. Limited research exists on COVID-19's effects on these families. This study aimed to assess the pandemic's impact and identify psychosocial support gaps. Participants (N = 256) were parents of children with cancer recruited via Facebook in partnership with Momcology®, a community-based organization for pediatric cancer, between February and May 2021. Qualitative analyses used open-ended responses about the pandemic's impact on the family. Analysis revealed 6 themes, with positive and negative sentiments: family changes (n = 169; 61% negative), social isolation (n = 154; 100% negative), emotional impact (n = 143; 89% negative), school changes (n = 126; 80% negative), health-care changes (n = 111; 96% negative), and physical health (n = 49; 73% negative). Family changes overarched all themes and included financial strains, at-home schooling, and family bonding. Parents highlighted social isolation and the emotional impact of pandemic-related changes. School changes forced parents to balance remote-work and childcare. Health-care changes limited resources and visitation. Parents reported their children were less active and slept less but had fewer illnesses. Many common pandemic challenges were exacerbated by the stress of caring for a child with cancer. Parents struggled most with loss of social support and feelings of isolation. Careful consideration should be given to providing resources for parents of children with cancer and their families.

Digital parenting divides: the role of parental capital and digital parenting readiness in parental digital mediation

Abstract This study investigates digital parenting divides, or how parents' strategies for regulating their children’s online activities differ based on their available resources and digital parenting readiness (i.e., digital parenting self-efficacy, attitudes, and knowledge). We conducted a survey of 530 parents that reflected the composition of the U.S. population to explore how parents’ resources and digital parenting readiness predict their digital mediation strategies. The results indicate that parents’ economic, social, and cultural resources, as well as their digital parenting readiness, play a significant role in how they approach digital mediation. Furthermore, digital parenting readiness has emerged as an underlying mechanism explaining the relationship between parental resources and parental mediation strategies. The presence of digital parenting divides highlights the need for tailored interventions to support parents in effectively using digital mediation strategies based on their family’s circumstances.

Exploring Vegan Mothers’ Experiences of Making Food Choices for Infants and Young Children

ObjectiveOur study aimed to explore vegan mothers’ experiences and decision-making processes when feeding their children (up to 3 years old). MethodsWe conducted a qualitative photo-elicitation interview study in the United Kingdom. Eight vegan mothers provided 5 photographs of food choices they had made for their children and completed online photo-elicitation interviews to discuss these images. Data were transcribed verbatim and analyzed using reflexive thematic analysis. ResultsFive themes were developed: role modeling eating behavior, shared decision-making, nutritional guidance for vegan parents, fear of judgment for being vegan, and desire for convenience. Conclusions and ImplicationsFindings illustrate the complexity of the decision-making process and highlight the need for targeted resources for vegan parents. There is a need for awareness raising and training for health care professionals and the development of vegan-specific child-feeding resources to facilitate the provision of evidence-based nutritional guidance for vegan parents.

Does social origin modify the heritability of cognitive ability? A close look at the relevance of different parental resources

Cognitive ability plays a prominent role among individual characteristics favorable for success in life. The extent to which endowments for cognitive ability can be realized is an important aspect of unequal life chances in a society. Social origin is considered particularly relevant for realizing cognitive genetic potentials, but related empirical findings are mixed. This paper examines whether there are differences in the interactions between genetic variation and social origin across distinct parental resources and whether the patterns of interactions are (non)linear for three different cohorts of twins (late childhood, adolescents, young adults). Our results showed inconsistent interaction patterns across cohorts and parental resources. A pattern following the Scarr-Rowe Interaction (SRI) was observed only for the younger twins (late childhood) and only for parental occupational status. There were (for the most) no interaction patterns for the adolescent twins. For the young adult twins, patterns partly followed a “reverse” SRI. Taken together, the results suggested that, first of all, parental occupational status and household income moderate either genetic or environmental contributions to cognitive ability in Germany, however, not consistently as a Scarr-Rowe interaction. Using composite measures would have obscured these differential effects of social origin. The interaction patterns are mostly not in line with an SRI but can be approximated using a linear approach in many cases.

Gene-environment interplay in internalizing problem behavior.

Behavior genetic methods are useful for examining mechanisms underlying the interaction between genetic and family environmental factors of internalizing problem behavior (INT). Previous twin studies, however, have shown little consistency in interaction patterns, depending on type and operationalization of measured environments. The aim of the current study was to explore different gene-by-environment interaction patterns among different family-level environmental risk factors and resources known to correlate with INT. Using an empirical-based approach, we combined various indicators of the family environment to derive four dimensions: positive parenting, negative parenting, lack of parental resources, and socioeconomic status. We then used a genetically informed design of twins raised in the same family to test whether interaction patterns followed a diathesis stress or vantage sensitivity model formulation. The sample consisted of 2,089 twin pairs and their families from two twin birth cohorts (ages 11 and 17) participating in Wave 1 of the German TwinLife study of social inequalities. In line with a vantage sensitivity pattern of interaction and with the bioecological model of development (Bronfenbrenner & Ceci, 1994), evidence for a general mechanism of gene-environment interaction with increasing nonshared environmental variance for more adverse and less propitious family conditions was found. In preadolescence, parenting behavior had a greater moderating influence on INT compared to general family conditions like socioeconomic status. Interventions for INT that directly involve parents, thus, may be more important in preadolescent populations whereas individual interventions for adolescents may be more successful if they are adapted to different levels of socioeconomic status. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Autism and bilingualism: A thematic analysis of practitioner perspectives in the United Kingdom.

At least 25% of autistic children worldwide have the potential to grow up in a bilingual environment. However, many autistic children are being denied opportunities to access additional languages and the cultural, familial and community connections that come with this. There is little evidence identifying the barriers to language learning and access, and no research addressing the perspectives of speech and language therapists (SLTs), who are crucial in supporting parents to make informed choices about bilingualism with their child. The aim of this research was to understand the experiences of SLTs working with autistic bilingual children, to understand the main considerations when working with families, and the opportunities and barriers for training, including the sources of information that current practice is based on. Twelve SLTs from across the United Kingdom were recruited for this study. All participants were experienced in working with autistic bilingual children and their families (M = 7 years, range 4-23 years). Semi-structured interviews were conducted and focused on the experiences of SLTs regarding familial bilingual experiences, the effect of sociocultural factors of practice, and the extent to which practice is based on current research. Data were analysed using reflexive thematic analysis. Three central themes were identified from the interviews: (1) participants discussed parental uncertainties as to whether they were doing the right thing for their child, (2) while participants were in support of bilingualism, they were not always confident that they were providing the right advice and found it difficult to in keep up to date with relevant, evidence-based research, and (3) participants highlighted a need to shift towards a more inclusive and culturally diverse practice. This is the first qualitative study to understand the perspectives of SLTs working with autistic bilingual children. We identify several key difficulties in supporting access to language learning, and these findings have immediate and longer-term implications for supporting SLTs, and in turn, the children and families they support. What is already known on the subject Research suggests that autistic children currently have fewer opportunities to maintain bilingualism compared to neurotypical peers. Despite the lack of evidence, many families remain concerned that bilingualism will have a negative impact on their child's development. To date, little is known about the perspectives of speech and language therapists (SLTs) who play a significant role in supporting the development of autistic bilingual children. This is the first study to provide an in-depth qualitative analysis of the experiences of SLTs working with autistic bilingual children and their families in the United Kingdom. What this study adds The results highlight a number of reoccurring barriers in providing optimal support: first, frequently cited concerns about bilingualism from parents that link to a lack of understanding about autism and the role of SLTs more generally. Second, SLTs do not have confidence in the assessments and tools available and described a lack of emphasis on cultural factors in practice. Many SLTs were concerned about the limited options for resources and interventions available in other languages, which could be challenging for parents who were less proficient or confident communicating in English. Third, SLTs reported having limited opportunities to keep up to date with relevant research to support their decision-making processes. What are the clinical implications of this work? These results have several important implications for practice-they highlight the need for more inclusive practices where possible, a need for more diversity within the profession and further opportunities to be provided with evidence-based advice around good practice. The results also suggest a benefit of providing accessible, evidence-based resources for parents about autism and bilingualism, to ensure that research key findings are reaching families.

Pre-pandemic family resources and child self-regulation in children's internalizing problems during COVID-19: a multi-level social-ecological framework for emotional resilience.

Children's psychological adjustment to adverse events can be determined by multiple risk and resilience factors. This study explored multi-level protective factors against children's internalizing problems and investigated the mechanism regarding how diverse environmental and child-level resources influence children's mental health in the context of COVID-19. Our participants included a nationally representative sample of 2,619 young children (48.3% girls) and their primary caregivers (95.1% mothers) in Singapore. They were a subset of the participants in the Singapore Longitudinal Early Development Study (SG LEADS). Data were collected over two waves-before the outbreak of the COVID-19 pandemic (Wave 1) when these children aged 3 to 6, and during the second year of the pandemic (Wave 2). Primary caregivers completed measures of verbal cognitive ability, self-control, economic stress, and positive and negative parental control in Wave 1. Children's self-regulation was assessed by the Delay of Gratification task in Wave 1, and their internalizing problems were rated by their primary caregivers in both waves. Other pre-pandemic family and community characteristics were collected as covariates. Structural equation modeling was performed. Pre-pandemic parental resources (i.e., verbal cognitive ability, self-control, and low economic stress) predicted children's fewer internalizing problems during the pandemic and less aggravation of internalizing problems from before to during the pandemic, through more positive parental control (i.e., limit setting) and less negative parental control (i.e., harsh discipline). Moreover, children's self-regulation during early childhood was predicted by their primary caregivers' verbal cognitive ability and self-control, as well as positive parental control. Early childhood self-regulation further alleviated the aggravation of internalizing problems over time. Among the covariates, parental education, family income, parental psychological well-being, living with both parents, having a live-in domestic helper, and neighborhood quality also longitudinally predicted fewer child internalizing problems. Our findings underscore the importance of nurturing children's emotional resilience under adverse and uncertain circumstances by boosting protective factors in their social-ecological system, including community-, family-, parent-, and child-level resources.

Educational achievement among children with a disability: do parental resources compensate for disadvantage?

We examined the impact of child disability on Grade Points Average (GPA) using all children aged 15–16 years who completed their lower secondary education and registered with a GPA score in the period from 2016 to 2020 in Norway (n = 247 120). We use registry data that contain information on the child's main diagnosis, such as physical-, neurological- and neurodevelopmental conditions, and the severity of the condition, additional to the child's family characteristics. First, we examined whether the impact of the child's disability on the GPA scores varied by diagnosis and the severity of the child's condition. Second, we examined whether higher parental socioeconomic status (SES) buffers against the negative impact of child disability on GPA scores. Using longitudinal register data with the school fixed-effect model, the results showed that children with neurological and neurodevelopmental disabilities obtained lower GPA scores than their typically developing peers without chronic conditions, however children with asthma and diabetes had comparable GPA scores. These associations were most evident for neurodevelopmental conditions, such as ADHD and autism but also notable for neurological conditions such as epilepsy. In general, a severe condition impacts GPA scores more negatively than a less severe condition. Moreover, our analysis revealed that children of highly educated parents obtained higher GPA scores than children who had parents with short education. This applied to both disabled and typically developing peers, except children with autism and epilepsy, among whom buffering due to the parent's education did not seem to apply.

Screening and Identification of Host Factors Interacting with the Virulence Factor P0 Encoded by Sugarcane Yellow Leaf Virus by Yeast Two-Hybrid Assay.

Sugarcane yellow leaf virus (SCYLV), a member of the genus Polerovirus in the family Luteoviridae, causes severe damage and represents a great threat to sugarcane cultivation and sugar industry development. In this study, inoculation of Nicotiana benthamiana plants with a potato virus X (PVX)-based vector carrying the SCYLV P0 gene induced typical mosaic, leaf rolling symptoms and was associated with a hypersensitive-like response (HLR) necrosis symptom, which is accompanied with a systemic burst of H2O2 and also leads to higher PVX viral genome accumulation levels. Our results demonstrate that SCYLV P0 is a pathogenicity determinant and plays important roles in disease development. To further explore its function in pathogenic processes, a yeast two-hybrid assay was performed to screen the putative P0-interacting host factors. The recombinant plasmid pGBKT7-P0 was constructed as a bait and transformed into the yeast strain Y2HGold. The ROC22 cultivar (an important parental resource of the main cultivar in China) cDNA prey library was constructed and screened by co-transformation with the P0 bait. We identified 28 potential interacting partners including those involved in the optical signal path, plant growth and development, transcriptional regulation, host defense response, and viral replication. To our knowledge, this is the first time we have reported the host proteins interacting with the P0 virulence factor encoded by sugarcane yellow leaf virus. This study not only provides valuable insights into elucidating the molecular mechanism of the pathogenicity of SCYLV, but also sheds light on revealing the probable new pathogenesis of Polerovirus in the future.

Physical Education and the Importance of Lifelong Fitness Habits

This paper employed a mixed-methods approach, examines the connection between "Physical Education and the Importance of Lifelong Fitness Habits" in a sample of 500 participants. Quantitative results reveal a positive and statistically significant correlation between perceived physical education quality and lifelong fitness habits (r = 0.59, p < 0.01), with student engagement acting as a key mediator (r = 0.45, p < 0.01). Teacher competence positively associates with both program quality (r = 0.56, p < 0.01) and student engagement (r = 0.68, p < 0.01). Qualitative insights further underscore the role of engaging, well-structured physical education classes and effective teaching in shaping future fitness behaviors. Participants attribute their commitment to lifelong fitness habits to positive experiences within these programs and emphasize the vital roles of parental support and accessible community fitness resources beyond school. In summary, this research underscores the significance of quality physical education, student engagement, effective teaching, and parental involvement in fostering lifelong fitness habits. These findings advocate for investments in high-quality physical education, student engagement strategies, and parental support mechanisms. This study enriches the understanding of the multifaceted dynamics involved in lifelong fitness cultivation, with potential for further research exploring the moderating influence of environmental factors.

Assessing the Importance of Foster Parent Resources in Late Adulthood – An Analysis Based on Steven Hofoll’s Theory of Resource Conservation

The article presents the results of own research presenting differences in assessing the importance of resources in the older adults acting as foster parents for their grandchildren. For this purpose, the Questionnaire of Self-Assessment of Profits and Losses in Resources in a shortened version (40 items) in the Polish adaptation of B. Dudek, J. Koniarek, E. Gruszczyńska and the author’s questionnaire were used. One hundred sixty people took part in the study. The study group consisted of 80 foster parents in late adulthood. The control group comprised 80 older adults who did not perform this function. The analysis of validity assessment included in this paper is based on Steven Hobfoll’s Theory of Conservation of Resources.Statistical analysis showed statistically significant differences in the scope of individual categories of resources. It turned out that foster parents give significantly more value to family resources but less value to hedonistic and economic-political resources than people from the control group. On this basis, it can be concluded that older adults acting as foster parents, taking up the challenge of caring for their grandchildren, are guided by the good of the family and family values, which they consider the most valuable. At the same time, it can be assumed that due to their role, they need to have the opportunity to meet their own needs, which they perceive as less important.

Parental resources and heritability as factors shaping children's health. An analysis of twins' self-rated health using TwinLife.

We assess the relative and joint contributions of genetic and environmental factors on health during childhood and assume that parental resources are part of the environmental factors shaping children's health. We discuss theoretical background and empirical evidence concerning the effects of parental resources and heritability on children's health. Based on these findings we formulate six hypotheses guiding our empirical analysis, using data from TwinLife, a nationally representative sample of same sex twin pairs in Germany. We analyze self-rated health of 1,584 twin pairs aged 4-18. We did find strong support for the idea that parental resources influence children's health: household income and fathers' education consistently show positive effects. In contrast to our expectation, we did not find that genetic factors influence the health of well-off children less than the health of children living in families with lower SES. We also did not find that the genetic influence on health increases during childhood and adolescence. On the contrary our results indicate that the role played by genetic factors diminishes whereas environmental factors gain importance for health of children while growing up. This finding is good news for those interested in improving health chances of children from lower SES backgrounds because it demonstrates the malleability of children's health.

Easing pandemic-related restrictions, easing psychosocial stress factors in families with infants and toddlers? Cross-sectional results of the three wave CoronabaBY study from Germany

BackgroundFamilies with young children are particularly vulnerable for the stressors induced by the COVID-19 pandemic. However, studies on their psychosocial situation during the course of the crisis are still sparse.MethodsIn a comparison of three survey waves (wave I and III = high COVID-19 incidences), we cross-sectionally investigated the proportion of families (Ntotal = 2940) with children aged 0–3 years experiencing pandemic burden, parenting stress, and parental and child mental health problems in relation to COVID-19 incidences and restrictions in Southern Germany via validated questionnaires. Potential influencing factors were also explored.ResultsThe number of parents with a high pandemic burden decreased over the course of the pandemic with a peak of 65.3% in wave I (significant changes except wave II versus III). Participants with high parenting stress significantly increased from 38.2% in wave I to 51.2% in wave III. The number of parents with symptoms of depression and anxiety remained constantly high with a maximum of 28.4% being affected. Infants with crying/sleeping problems increased significantly from 26.4% in wave I to 35.5% in wave III. Toddlers’ emotional and behavioral problems showed a peak of 23.9% in wave III (no significant changes). Increased family conflicts were the strongest predictor for parenting stress (ß = 0.355), maternal (ß = 0.305), infants’ (ß = 0.149) and toddlers’ (ß = 0.216) mental health problems during the pandemic.ConclusionsPsychosocial stress factors in families with infants and toddlers remained highly pronounced and even partly increased irrespective of pandemic events. The findings suggest a staggered negative impact of pandemic-related factors on young children’s mental health. Promoting infants’ mental health as well as strengthening parental resources by reducing parenting stress should be a top healthcare priority in the aftermath of COVID-19.Trial registration The study was pre-registered in OSF (https://osf.io/search/?q=tksh5&page=1)

Disseminating online parenting resources through community-academic partnerships.

This community-engaged study aimed to understand effective strategies for disseminating online parenting resources (OPRs) in schools. OPRs were disseminated through seven E-Parenting tips and eight Facebook posts. Facebook posts were viewed a total of 12,404 times, and each post reached an average of 505 people each month. Average engagement rate was 2.41% per post. E-Parenting tips yielded 1514 total clicks, and the average clicks per message was 216.29. E-Parenting tips related to internalizing problems (e.g., anxiety, depression) had a higher click rate than E-Parenting tips related to externalizing problems (e.g., oppositional behavior). OPRs disseminated through Facebook posts, and E-Parenting tips resulted in wide reach and engagement. Different media channels should be utilized to disseminate different OPRs to as many parents as possible.

Features of the training of specialists in the social and pedagogical sphere for the prevention of deviant behavior of minor children: foreign and ukrainian experience

Modern social and economic and socio-pedagogical realities in Ukraine have put on the agenda the necessity and expediency of purposeful training of future social workers and social pedagogues to prevent deviant behavior of minors. After all, the presence of deviant forms of behavior among minors, as the most vulnerable socio-demographic group, poses a threat to the stability, security and progress of society. Therefore, prevention, early detection, localization of antisocial phenomena, minimizing their negative consequences and creating optimally favorable conditions for successful socialization of the individual should become a priority area of activity of specialists whose professional activities are related to children and youth. The author substantiates the feasibility of a systematic approach to improving the professional training of future specialists in the social and pedagogical sphere in the context of global priorities of social work and the modern interpretation of the mission of social and pedagogical activity as an important mechanism for the implementation of social policy tasks regarding the creation of favorable conditions for life, life support and life fulfillment of all members of society and humanization of the system of social relations. The mechanism of ensuring the cognitive-technological component of the readiness of future specialists to combine the resources and efforts of all socio-pedagogical institutions in order to create optimally favorable conditions for the socialization and social education of minors and the use of innovative models and technologies for the prevention and prevention of deviant behavior in them is revealed. Possibilities of improving educational and professional programs for training future social work specialists and social pedagogues to carry out preventive work in the children's and youth environment, relying on the strengths and resources of civil society, social institutions, territorial communities, pedagogical teams, parents, family members, public and volunteer associations.

Exploring Parents' Perceptions Toward Early Childhood English Language Education in Jakarta

This study investigates parents' perceptions of early childhood English language education in Jakarta, Indonesia. With an increasing emphasis on English proficiency in a globalized world, understanding parental attitudes toward introducing English early age is essential. This research employed a mixed-methods approach, utilizing a survey questionnaire to gather insights from 52 parents, consisting of 40 mothers and 12 fathers, whose children were between 3 to 6 years old. The survey revealed that 92% of parents agreed that early English education enhances language development, 88% believed it provides a competitive edge, 83% considered it crucial for opportunities, and 74% saw its potential to boost cognitive skills. In-depth interviews were conducted with 16 participants, selected through purposive sampling, to delve deeper into parental perceptions, providing further insight. The findings underscore parents' collective recognition of the positive impact of early English education on language development and cognitive skills, presenting a valuable resource for parents seeking informed decisions about their children's early language learning journey. The study offers input for educators, policymakers, and curriculum designers aiming to create effective early English programs resonating with parental perspectives.

Misunderstood terms and concepts identified through user testing of educational materials for fragile X premutation: "Not weak or fragile?"

Complicated genetic mechanisms and unpredictable health risks associated with the FMR1 premutation can result in challenges for patient education when the diagnosis is made in a newborn. From October 15, 2018, to December 10, 2021, North Carolina parents could obtain FMR1 premutation results about their newborns through a voluntary expanded newborn screening research study. The study provided confirmatory testing, parental testing, and genetic counseling. We developed web-based educational materials to augment information about fragile X premutation conveyed by a genetic counselor. Many genetics education materials are developed for the lay population. However, relatively little research is published on how well individuals understand these materials. We conducted three rounds of iterative user testing interviews to help refine web-based educational materials that support understanding and self-paced learning. The participants included 25 parents with a 2-year college degree or less and without a child identified with fragile X syndrome, premutation, or gray-zone allele. Content analysis of interview transcripts resulted in iterative changes and ultimately saturation of findings. Across all rounds of interviews, there were two terms that were commonly misunderstood (fragile and carrier) and two terms that elicited initial misconceptions that were overcome by participants. Many also had difficulty understanding the relationship between fragile X premutation and fragile X syndrome as well as appreciating the implications of having a "fragile X gene." Website layout, formatting, and graphics also influenced comprehension. Despite iterative changes to the content, certain issues with understandability persisted. The findings support the need for user testing to identify misconceptions that may interfere with understanding and using genetic information. Here, we describe a process used to develop and refine evidence-based, understandable parental resources on fragile X premutation. Additionally, we provide recommendations to address ongoing educational challenges and discuss the potential impact of bias on the part of expert content developers.