Understanding barriers to well-child visit attendance among racial and ethnic minority parents.

OBJECTIVES: To assess racial and ethnic minority parents' perceptions about barriers to well-child visit attendance. METHODS: For this cross-sectional qualitative study, we recruited parents of pediatric primary care patients who were overdue for a well-child visit from the largest safety net healthcare organization in central Massachusetts to participate in semi-structured interviews. The interviews focused on understanding potential knowledge, structural, and experiential barriers for well-child visit attendance. Interview content was inductively coded and directed content analysis was performed to identify themes. RESULTS: Twenty-five racial and ethnic minority parents participated; 17 (68%) of whom identified Spanish as a primary language spoken at home. Nearly all participants identified the purpose, significance, and value of well-child visits. Structural barriers were most cited as challenges to attending well-child visits, including parking, transportation, language, appointment availability, and work/other competing priorities. While language emerged as a distinct barrier, it also exacerbated some of the structural barriers identified. Experiential barriers were cited less commonly than structural barriers and included interactions with office staff, racial/ethnic discrimination, appointment reminders, methods of communication, wait time, and interactions with providers. CONCLUSIONS: Racial and ethnic minority parents recognize the value of well-child visits; however, they commonly encounter structural barriers that limit access to care. Furthermore, a non-English primary language compounds the impact of these structural barriers. Understanding these barriers is important to inform health system policies to enhance access and delivery of pediatric care with a lens toward reducing racial and ethnic-based inequities.

Study protocol OKRA: orientation compass for the preparing, delivering and following up on breaking bad news conversations in paediatric oncology.

INTRODUCTION: In paediatric oncology, 'breaking bad news'-BBN-like cancer diagnosis is perceived as particularly challenging. Enabling a trialogue between children with their relatives and health professionals requires profound communication skills. Lacking the skills, experience or adequate support tools might result in negative consequences for both paediatric oncologists as BBN transmitters and BBN receivers as children with cancer and their relatives.In contrast to oncology for adults, multiperspective studies that explore BBN experience and specific support needs are rare, especially in Germany. Systematically developed and practically piloted support instruments, which address the specific needs of paediatric oncology, are missing. OBJECTIVE: To systematically design and mature in practice an orientation compass for preparing, delivering and following up on BBN conversations in paediatric oncology-so-called Orientierungskompass zur Übermittlung schwerwiegender Nachrichten in der Kinderonkologie (OKRA). METHODS AND ANALYSIS: OKRA is based on a QUAL-quant mixed study design, comprising two phases. Four groups will contribute (1) experts through personal experience (representatives for children receiving BBN and their parents), (2) medical care providers and representatives of national medical societies, (3) ambulant psychosocial/psychological support providers and (4) researchers. In phase 1, multiperspective knowledge is generated through a participatory group Delphi that involves in-depth interviews, focus group discussions and questionnaires. This process culminates in formulating theses for a high-quality BBN process (output phase 1). In phase 2, based on the theses, a pilot orientation compass is designed. Through iterative cycles with the participatory action research method, this instrument will be piloted in three paediatric oncological settings and consequently optimised. ETHICS AND DISSEMINATION: OKRA was approved on 19 September 2023 by the ethics committee of the Medical Faculty of the University of Cologne (No. 23-1187). After project completion, the OKRA compass will be distributed to multidisciplinary paediatric oncology teams throughout Germany. TRIAL REGISTRATION NUMBER: DRKS00031691.

Engaging Youth Voice and Family Partnerships to Improve Children's Mental Health Outcomes.

Promoting active participation of families and youth in mental health systems of care is the cornerstone of creating a more inclusive, effective, and responsive care network. This article focuses on the inclusion of parent and youth voice in transforming our mental health care system to promote increased engagement at all levels of service delivery. Youth and parent peer support delivery models, digital innovation, and technology not only empower the individuals involved, but also have the potential to enhance the overall efficacy of the mental health care system.

Childhood Interests: what they are and why it matters.

This paper examines the concept and moral significance of "childhood interests." This concept is important in medical decision-making for children and more broadly in the field of pediatric ethics. The authors argue that childhood interests are identifiable components of childhood well-being that carry moral weight. Parents have a special role in protecting and promoting these interests and special obligations to do so. These parental obligations are grounded by the independent interests of the child, as well as the good of society more generally. Because parents have these child-rearing obligations, they must also have the authority and wide discretion necessary to fulfill them. However, while parental discretion is wide, it is not unlimited, for it must be used to safeguard and advance childhood interests.

Pediatric Decision-Making: ethical aspects specific to neonates.

Recently published consensus recommendations on pediatric decision-making by Salter and colleagues (2023) did not address neonatal decision-making, due to the unique complexities of neonatal care. This essay explores three areas that impact neonatal decision-making: legal and policy considerations, rapid technological advancement, and the unique emotional burdens faced by parents and clinicians during the medical care of neonates. The authors evaluate the six consensus recommendations related to these considerations and conclude that the consensus recommendations apply to neonates.

Teenage Development and Parental Authority: applying consensus recommendations to adolescent care.

The consensus recommendations by Salter and colleagues (2023) regarding pediatric decision-making intentionally omitted adolescents due to the additional complexity their evolving autonomy presented. Using two case studies, one focused on truth-telling and disclosure and one focused on treatment refusal, this article examines medical decision-making with and for adolescents in the context of the six consensus recommendations. It concludes that the consensus recommendations could reasonably apply to older children.

Decision-Making for Adolescents with Gender Dysphoria.

Legislation banning gender-affirming medical care (GAMC) for minors is inconsistent with the Consensus Recommendations for Pediatric Decision-Making (Salter et al. 2023). Gender dysphoria is a medical condition, and GAMC promotes adolescents' health interests. The evidence for GAMC is comparable to the evidence for other types of pediatric medical care. Parents are permitted to consent for similar risks in the treatment of other conditions. Evaluation of the potential benefits, risks, and treatment alternatives is contingent on individual patients' clinical conditions and adolescents' and their parents' values and preferences. Such decisions are within the scope of parental discretion and should be made through shared decision-making with health-care providers. Parents' declining GAMC does not inherently create a significant risk of serious imminent harm required to justify state intervention. Usurping parental discretion for GAMC is unjust: it treats this medical care differently than other comparable types of medical care without sufficient justification.

Limits on Parental Discretion in Medical Decision-Making: pediatric intervention principles converge.

Pediatric intervention principles help clinicians and health-care institutions determine appropriate responses when parents' medical decisions place children at risk. Several intervention principles have been proposed and defended in the pediatric ethics literature. These principles may appear to provide conflicting guidance, but much of that conflict is superficial. First, seemingly different pediatric intervention principles sometimes converge on the same guidance. Second, these principles often aim to solve different problems in pediatrics or to operate in different background conditions. The potential for convergence between intervention principles-or at least an absence of conflict between them-matters for both the theory and practice of pediatric ethics. This article builds on the recent work of a diverse group of pediatric ethicists tasked with identifying consensus guidelines for pediatric decision-making.

Pediatric Decision-Making for Children in State Custody.

In summer 2022, six points of consensus emerged from a symposium addressing the question, "In the context of U.S. pediatric care, what moral precepts ought to guide parents and clinicians in medical decision making for children?" (Salter et al. 2023). The authors of this statement wrote, however, that the points of consensus may require modification or may not apply in their entirety to children in state custody. This article addresses the consensus recommendations in the context of the thousands of children removed annually from the custody of their parents. While the consensus statements developed at the symposium provide a good starting point for decision-making in the context of these children, some alterations and nuance must be applied to attend to the specific needs of this population. The article works through what special considerations and changes ought to be made to expand the reach of the original points of consensus without neglecting the particular conditions of children in state custody, as well as their parents and caregivers.

Medical Decision-Making for Children in Families with Siblings: parental discretion and its limits.

This article examines how parents should make health decisions for one child when they may have a negative impact on the health interests or other interests of their siblings. The authors discuss three health decisions made by the parents of Alex Jones, a child with developmental disabilities with two older neurotypical siblings over the course of eight years. First, Alex's parents must decide whether to conduct sequencing on his siblings to help determine if there is a genetic cause for Alex's developmental disabilities. Second, Alex's parents must decide whether to move to another town to maximize the therapy options for Alex. Third, Alex's parents must decide whether to authorize the collection of stem cells from Alex for a bone marrow transplant for his sibling who developed leukemia. We examine whether the consensus recommendations by Salter and colleagues (2023) regarding pediatric decision-making apply in families with more than one child.

See us, hear us! children, adolescents and families in Saskatchewan coping with mental health during the COVID-19 pandemic.

PURPOSE: To examine the lived experiences of children and adolescents coping with mental health issues and seeking mental health services in Saskatchewan during the COVID-19 pandemic. METHODS: In our descriptive phenomenological qualitative study, we interviewed forty-six individuals, including children aged 8-15 and their parents. Thematic analysis was applied to interpret the interview data. RESULTS: Our analysis identified three key themes: pyscho-behavioural impact, academic impact, and social impact. The pandemic adversely affected children due to factors like changes in behaviours such as increased screen time and decreased physical activity, limited access to mental health services, and disruptions to schooling and social interactions. Coping mechanisms varied, ranging from the utilization of available mental health supports and services to individual and family-based strategies. Disparities in timely access to mental health services were evident, with financially stable families accessing private services, while others struggled, particularly in rural areas. Families demonstrated resilience through parental efforts to seek balance and prioritize safety amidst COVID-19 challenges. CONCLUSIONS: Social connectedness served as a crucial buffer against pandemic-induced stress. Children faced difficulty in accessing timely mental health services and supports. Echoing participant experiences, our findings emphasize the urgency of targeted interventions and policy adjustments to address existing gaps in mental health service accessibility and availability.

Childhood vaccination hesitancy in Saudi Arabia: are we still facing a problem? A narrative review.

Vaccination is a crucial public health intervention for infection prevention. Yet, vaccine hesitation has emerged as a pressing public health concern. The objective of this review is to identify the widespread and causes of vaccine hesitancy prevalance among parents of children in Saudi Arabia. A narrative review, surveying several databases, including PubMed, PubMed Central, Scopus, Google Scholar, and relevant regional journals. We selected studies related to vaccine hesitancy prevalence and causes after removing duplicates and screening for relevance and access to full text. A total of 18 articles met the final selection criteria.The prevalence of parental vaccination reluctance in Saudi Arabia shown significant variability; ranging from 3.1-72.2%. Concerns regarding vaccine side effects appeared as the foremost reason for vaccine hesitancy. The review concluded that numerous Saudi Arabian parents still hesitate to vaccinate their children. They believe the potential adverse effects of vaccination outweigh the protective benefits against diseases.

Validation of an improved questionnaire assessing the social cognitive constructs of the Health Action Process Approach among parents regarding brushing their children's teeth.

OBJECTIVE: The Health Action Process Approach (HAPA) describes social cognitive constructs related to behaviour change. A validated questionnaire is needed to measure these constructs in paediatric dentistry. The aim of this study was to improve an existing HAPA-based questionnaire for parents regarding brushing their children's teeth and to assess its validity and reliability in a population of parents of high caries risk children. METHODS: Parents of high caries risk children of 3-10 years filled out the adjusted HAPA-based questionnaire. Mokken scale analysis, graded response model analyses, factor analyses and reliability analyses were performed according to the protocol of Dima. Discriminant validity was assessed by comparing the mean scores of the HAPA constructs between two groups of participants, based on different levels of caries experience, brushing frequency and education level of the mother. RESULTS: The Mokken scale analysis and factor analyses indicated a multidimensional eight factor scale. The graded response model did not fit our data. The subscale action control could be identified as a two-factor subscale. Reliability indices from the Dima protocol varied, for instance Cronbach alpha ranged from 0.73 to 0.96. The constructs coping self-efficacy, action planning and action control discriminated between brushing frequencies. CONCLUSIONS: The adjusted HAPA-based questionnaire is an improved, valid and reliable instrument that could be used to evaluate HAPA-based interventions to improve children's oral health.

Moral aspects of filial concern for a parent living with dementia: Social imaginaries in contemporary narratives.

Many adults face the difficulties of a parent living with dementia. Although not always caregiving for a parent living with dementia, they care about and are concerned for the vulnerability of their parent. This concern is invaluable but often an experience with a far-reaching impact. Qualitative research on filial concerns and experiences of caregiving has resulted in a vast body of knowledge about the experience of family carers. Far less research, however, has examined the moral concern of children. The aim of this study is to gain insight into the normative aspects of their concern. An international collection of 24 books written by adult children about their involvement with an ageing parent was analysed using the Dialogical Narrative Analysis method. Our study shows that the stories deal with children's moral questions about independence, identity, and suffering. These questions can be related to social imaginaries of individualism and progress. The two social imaginaries may have both positive and negative impacts on children's ability to cope with their concern for a parent living with dementia. The moral questions that arise from children's concern seem to originate from both the appeal of the vulnerable parent and from the social imaginaries. These moral sources may compete, resulting in moral friction. Children with a parent living with dementia deliberate upon the personal and societal held beliefs and need moral space to embody their concern.

Translation and Cross-Cultural Adaptation of Arabic Version of the Speech, Spatial, and Qualities of Hearing Scale for Parents.

OBJECTIVE: In this study, we aimed to translate into Arabic and culturally adapt the Speech, Spatial, and Qualities of Hearing Scale for parents (SSQ-P). METHODS: This was a cross-sectional study conducted over a 10-month period from February to November 2021. Translation of the SSQ-P into Arabic was performed using the forward-backward translation methodology, as recommended by the World Health Organization. Parents of 130 Arabic children aged 5-11 years with normal hearing were asked to complete the Arabic adaptation of the SSQ-P. RESULTS: The SSQ-P was successfully translated and cross-culturally adapted into Arabic with only a few changes to ensure the comprehensibility and cultural appropriateness of the Arabic version. All parents returned the Arabic SSQ-P, with no missing data. The Arabic SSQ-P showed high internal consistency, with the Cronbach's alpha of approximately 0.91. The intraclass correlation coefficient of the individual items and total SSQ-P score was 0.90, indicating high reliability (P < 0.001). CONCLUSION: The Arabic translation and cultural adaptation of the SSQ-P is currently available. Further studies are needed to assess test-retest reliability and discriminant validity of the Arabic SSQ-P to better understand its usefulness and applicability.

Family adjustment and resilience after a parental cancer diagnosis.

PURPOSE: To explore the resources, parents with cancer and their partners draw upon to sustain their family resilience through the cancer experience. METHODS: Fifteen participants who were parents of children aged 8 to 25 years completed phone, audio-recorded, and semi-structured interviews. Of these participants, 11 were parents diagnosed with cancer, and four were partners of a parent diagnosed with cancer. Interview questions aimed to increase understanding about how families communicate, connect, and face challenges from the cancer experience. Interview data was analysed using inductive thematic analysis to provide scope to generate themes from parent's experiences rather than to test pre-existing frameworks. RESULTS: The thematic analysis of interview transcripts generated three key themes related to family resilience: (1) adaptability to changes in roles and routines, (2) open communication within the family, and (3) accepting support from others. CONCLUSION: This study found that parents' ability to use personal resources when faced with significant challenges helped to improve the resilience of parents' family system. Further research is needed to understand the factors that influence family resilience when a parent is diagnosed with cancer. Implications for the development of targeted interventions that provide support to not only the patient, but their whole family system will be discussed.

Burnout during the COVID-19 pandemic among nurses in Taiwan: the parental role effect on burnout.

BACKGROUND: During the COVID-19 pandemic, medical workers were concerned about the care of their children or family members and the impact of being separated from them. This increased stress could harm the relationship between nurses and patients. This study assessed how medical workers' parental role may affect burnout during such a high-stress period. METHODS: This cross-sectional observational study was carried out in 2021 during the COVID-19 pandemic. The client burnout (CB) scale of the Copenhagen Burnout Inventory, the Nordic Musculoskeletal Questionnaire, and a demographic questionnaire were used. Statistical methods such as the t-test, one-way ANOVA, and univariable/multiple linear regression were applied. RESULTS: A total of 612 nurses were included in this study. The likely risk factors of CB were identified and the parenthood effect was found to be associated with reduced CB. The parental role and leisure activity with family and friends on CB were found to have an impact. Engaging in leisure activity with family and playing the role of a parent diligently will help relieve nurses' burnout from frequent contact with patients and their families, thus lowering the risk of clinical burnout. CONCLUSION: The parental role, family/friends relationships, and a complex work environment associated with nurses' burnout during the COVID-19 pandemic. This finding allows us to re-examine the importance of family life and parent-child relationships in high-stress work environments.

Parent Education and Adolescent Health Outcomes: The Potential Role of Adolescent Academic Intention.

Parental educational attainment significantly shapes child socioeconomic status, potentially influencing various aspects of adolescent health. This study aimed to uncover the relationships between parental education and self-reported adolescent health outcomes, including overall health, mental well-being, and body mass index (BMI). Analyzing data from 1,448 participants in the Future of Families and Child Wellbeing Study, we identified notable associations. Our findings revealed that higher maternal and paternal education correlated with reduced odds of adolescent obesity. Furthermore, increased adolescent academic intention was associated with better overall and mental health in adolescents. Notably, it also played a mediating role in lowering adolescent BMI, thereby potentially explaining the association between parent education and adolescent BMI category (overweight vs. obese). These findings emphasize the significant impact of both parent education and adolescent academic intention on adolescent health. Future research should explore interventions leveraging academic intention to positively influence the health trajectory of adolescents.

Attitudes towards Telemedicine among Pregnant People and Parents of Toddlers in an Urban Safety-net Setting.

OBJECTIVE: To understand attitudes towards telemedicine and to further elucidate benefits, disadvantages, and visit preferences in a largely minority, urban safety-net setting. METHODS: Between 2020 and 2021, pregnant people, and parents of children younger than two years old were recruited from outpatient clinics. Interviews were conducted via phone, recorded, transcribed, and translated. Data were analyzed using content analysis. RESULTS: Seventy-four (74) individuals participated including 42 pregnant people and 32 parents. Most participants cited advantages to telemedicine including safety, convenience, improved access, and less disruption of work schedules, and wished to continue to have the telemedicine option available after the pandemic. CONCLUSIONS: Patients seeking care in safety-net settings, many of whom are working parents, noted that telemedicine improves access to care by providing an efficient and accessible option that overcomes barriers related to transportation and work schedules. Their experiences highlight the importance of continuing to offer telemedicine services.

Empowering parents to optimize feeding practices with preschool children (EPO-Feeding): A study protocol for a feasibility randomized controlled trial.

BACKGROUND: Parental feeding practices (PFPs) play a key role in fostering preschoolers' dietary habits and in mitigating the risk of childhood obesity. Nevertheless, parents often employ inappropriate feeding practices, leading to children's potential nutrition-related issues. Thus, research is needed to inform interventions that focus on optimizing feeding practices. METHODS: This protocol describes the evaluation of a novel intervention-Empowering Parents to Optimize Feeding Practices (EPO-Feeding Program). The program will be evaluated with a two-arm feasibility randomized controlled trial (RCT) in Yangzhou, China. The program includes four weekly group-based training sessions led by healthcare professionals for parents of preschool children. The intervention incorporates sessions, group discussions, motivational interviewing, and supplementary materials (e.g., key messages and educational videos) aimed at enhancing parents' knowledge, skills, and behaviours related to feeding practices. The primary outcomes include i) implementation feasibility, primarily assessed through retention rates; and ii) program acceptability through a survey and qualitative process evaluation. Secondary outcomes encompass the potential impacts on i) PFPs, ii) parental perception of child weight (PPCW), iii) parenting sense of competence, iv) children's eating behaviours, and v) child weight status. Quantitative analyses include descriptive estimates for evaluating the feasibility and linear mixed regression analysis for testing the potential effects. Qualitative valuation will use thematic framework analysis. DISCUSSION: If this study shows this program to be feasible to implement and acceptable to parents, it will be used to inform a fully powered trial to determine its effectiveness. The research will also help inform policy and practices in the context of child nutrition promotion, particularly regarding implementing group-based training sessions by healthcare providers in similar settings. TRIAL REGISTRATION: Clinicaltrials.gov, Protocol #NCT06181773, 20/11/2023.