Provision For Children Research Articles

Evaluating mental health support by healthcare providers for patients with atopic dermatitis: A cross-sectional survey.

Atopic dermatitis (AD) is associated with psychosocial symptoms, resulting in significant mental health burden and reduced quality of life. To understand mental health support received by patients from their primary eczema provider. We administered a cross-sectional survey (N=954) to US caregivers and adult patients with AD. The National Eczema Association (United States) conducted an online survey in October 2022 among self-selected patients and caregivers. Patients and caregivers of AD patients reported on mental health conversations and types of mental health support received by their/their child's provider. Many patients did not discuss (41.9%) or were not asked (50.5%) about their mental health by their eczema provider, and 64% reported not receiving a mental health referral. Patients were more likely to receive mental health support if they were male (2.00 [1.08-3.69]), low or middle education level (4.89 [2.10-11.36], 2.71 [1.36-5.40]), or had purchased insurance policies (4.43 [1.79-10.98]). Providers were most likely to refer patients to counseling services (22.5%), followed by alternative mental health therapy (14.9%), cognitive behavioural therapy (13.3%) and peer/social support groups (12.2%). Despite the strong association between AD and mental health conditions, there is a significant proportion of patients that report not receiving mental health support from their/their child's primary eczema provider. Screening with validated measures may improve the identification of patients requiring additional support. Future research should evaluate the efficacy of mental health resources and barriers to accessing and referring patients for mental health care.

Using Vignettes as a Research Method to Investigate Placement and Provision for Children with Special Educational Needs in Different Countries

Using Vignettes as a Research Method to Investigate Placement and Provision for Children with Special Educational Needs in Different Countries

The intergenerational transmission of filial norms and children's provision of long-term care to parents

Abstract In the light of an increasing future demand for long-term care services in ageing societies, families' provision for current and future long-term care needs has been subject to debate. Within this context, there is little discussion about parents' incentives to socialise their children to their own traits to achieve a desired child behaviour. Our study contributes to the literature by analysing to what extent parents transmit filial norms to their children and whether this transmission process affects children's care-giving behaviour if a parent needs long-term care. Using data from the German Family Panel, we initially analyse the transmission of filial norms from mothers and fathers to their children. Second, we examine the importance of filial norms that prevail in the child's local environment. Third, we assess whether an intergenerational transmission of norms transmits into child behaviour if a parent needs long-term care. We estimate linear regression models and account for child and parent characteristics as well as for the living environment. The results show that children have stronger filial norms when both parents report stronger filial norms. But, children also tend to be influenced by average norms in their local environment. Furthermore, children are more likely to provide support to a parent in need when their filial norms are stronger. We conclude that children's filial norms are at least partially shaped via a process of socialisation and that these norms transmit into children's care-giving behaviour if a parent needs long-term care. It is, therefore, important that filial norms that prevail in a society are in accordance with the institutional long-term care system that prevails within that country.

Обеспеченность витамином D детей с детским церебральным параличом

Цель. Оценить обеспеченность витамином D детей с детским церебральным параличом и представить ее характеристику. Материалы и методы. В исследование включено 127 детей в возрасте от 2 до 18 лет (медиана возраста – 9,3 (6,1; 12,9) года) с детским церебральным параличом, находившихся на обследовании в республиканском центре детского остеопороза. Пациенты были разделены на 2 группы: 1-я группа (n=93, 73,2%) – не получавшие препараты витамина D; 2-я группа (n=34, 26,8%) – принимавшие препараты витамина D. Уровни общего 25-гидроксивитамина D (25(OH)D) в сыворотке крови определяли методом хемилюминесцентного иммуноанализа. Тяжелый дефицит витамина D определялся при уровне 25(OH)D <10 нг/мл, дефицит – при уровне 10–19 нг/мл, недостаточность – 20–29 нг/мл. Результаты. Медиана 25(OH)D сыворотки крови для всех исследуемых составила 17,6 (13,2; 27,2) нг/мл (диапазон: от 2,3 до 114,3 нг/мл). Дети, принимавшие витамин D, имели значимо более высокие уровни 25(OH)D в сравнении с пациентами без такой терапии – 29,5 (22,9; 40,7) нг/мл и 16,2 (11,2; 19,8) нг/мл соответственно (p<0,001). В 1-й группе тяжелый дефицит витамина D, дефицит и недостаточность выявлены у 16,1%, 59,2%, 17,2% соответственно (всего 92,5%); во 2-й группе дефицит витамина D и недостаточность зарегистрированы у 8,8% и 44,1% соответственно (всего 52,9%). Во 2-й группе обнаружена отрицательная корреляция между уровнем 25(ΟH)D и возрастом (rs=–0,503, p=0,002). В 1-й группе выявлены значимые сезонные колебания уровней 25(OH)D: наиболее высокие уровни 25(OH)D регистрировались летом (20,2 (15,7; 28,9) нг/мл), а наиболее низкие – зимой (12,1 (8,8; 16,8) нг/мл). Выводы. Выявлена высокая распространенность дефицита и недостаточности витамина D среди детей с детским церебральным параличом. Полученные данные детерминируют необходимость оптимизации мероприятий по профилактике дефицита витамина D у пациентов с данной патологией. Purpose. To evaluate vitamin D status in children with cerebral palsy and to present its characteristics. Materials and methods. The study included 127 children aged 2 to 18 years (age median being 9.3 (6.1; 12.9) years) with cerebral palsy undergoing examination in the Republican Center for Pediatric Osteoporosis. The patients were divided into 2 groups: group 1 (n=93, 73.2%) included children who did not receive vitamin D preparations; group 2 (n=34, 26.8%) included children who received vitamin D preparations. Serum total 25-hydroxyvitamin D (25(OH)D) levels were determined by chemiluminescent immunoassay. Severe vitamin D deficiency was defined as serum 25(OH)D level <10 ng/mL, deficiency 10–19 ng/mL, and insufficiency 20–29 ng/mL. Results. The median serum 25(OH)D for all subjects studied was 17.6 (13.2; 27.2) ng/mL (ranged from 2.3 to 114.3 ng/mL). Children who received vitamin D had significantly higher 25(OH)D levels compared with those who did not receive such therapy: 29.5 (22.9; 40.7) ng/mL and 16.2 (11.2; 19.8) ng/mL, respectively (p<0.001). In group 1, severe vitamin D deficiency, deficiency and insufficiency were detected in 16.1%, 59.2%, 17.2%, respectively (92.5% in total); in group 2, vitamin D deficiency and insufficiency were registered in 8.8% and 44.1%, respectively (52.9% in total). In group 2, a negative correlation was found between 25(ΟΗ)D levels and age (rs=–0.503, p=0.002). In group 1, significant seasonal variations in 25(OH)D levels were revealed: the highest 25(OH)D levels were recorded in summer (20.2 (15.7; 28.9) ng/ml), and the lowest ones in winter (12.1 (8.8; 16.8) ng/ml). Conclusions. A high prevalence of vitamin D deficiency and insufficiency among children with cerebral palsy was revealed. The data obtained determine the need to optimize measures for vitamin D deficiency prevention in patients with this pathology.

Survey of Lesbian, Gay, Bisexual, Transgender, and Queer Parents' Experiences Accessing Health Care for their Children With Developmental Disabilities

This study explored the impact of health care (HC) bias and discrimination on lesbian, gay, bisexual, transgender, and queer (LGBTQ) parents and their children with developmental disabilities. We conducted a national online survey of LGBTQ parents of children with developmental disabilities using social media and professional networks. Descriptive statistics were compiled. Open-ended responses were coded using inductive and deductive approaches. Thirty-seven parents completed the survey. Most participants identified as highly educated, White, lesbian or queer, cisgender women and reported positive experiences. Some reported bias and discrimination, including heterosexist forms, LGBTQ disclosure challenges, and, because of their LGBTQ identity, feeling mistreated by their children's providers or being refused needed HC for their child. This study advances knowledge around LGBTQ parents' experiences of bias and discrimination while accessing children's HC. Findings highlight the need for additional research, policy change, and workforce development to improve HC for LGBTQ families.

Filial piety, love or money? Foundation of old-age support in urban China

This article explores the intertwining issues of filial obligation, material interest and emotional intimacy in driving adult children's provision of old-age support in family settings. Drawing upon multi-generational life history interviews with urban Chinese families, this article reveals how the configuration of these multiple forces is governed by the socio-economic and demographic context of a particular time. The findings dispute a lineal modernization model of transition and generational change (from past family relations structured by filial obligation to the present emotion-laden nuclear family). Instead the multi-generational analysis reveals a tightening association of multiple forces around the younger generation, intensified by the one-child demographic structure, post-Mao commercialization of urban housing and establishment of the market economy. Finally, this article highlights the role of performance in carrying out old-age support. “Surface work” is enacted in situations where tensions between conformity to public morality and private intents (emotional or material) cannot be reconciled.

Effects of training parents in dialogic book‐sharing: The Early‐Years Provision in Children's Centers (EPICC) study

Shared picture-book reading is well-recognized as beneficial for children's early language development, especially where “dialogic book-sharing” techniques are used. Possible benefits of dialogic book-sharing to other aspects of child development have been little investigated, and it has not been widely studied in European populations. We conducted a randomized trial of dialogic book-sharing in Children's Centers in the UK, with parents of 2- to- 4-year-old children, hypothesizing that it would benefit parenting and a range of child developmental outcomes. Intervention group parents (n = 110) received 7, weekly, group training sessions, and control parents (n = 108) the usual center input. Parenting and a range of child outcomes (language, attention, executive function, social development, and emotional-behavior difficulties) were assessed on 3 occasions: before, after, and 4–6 month following intervention. For all study outcomes we compared controls with each of the Intention-to-Treat population and the per-protocol population (participants attending the requisite number of sessions); and, for primary child outcomes only, the population of parents who engaged well with the intervention. There were substantial benefits of dialogic book-sharing training to parental behavior during book-sharing, especially for sensitivity and cognitive scaffolding. For all 3 sets of comparisons there were small-medium effects of on child expressive language, and, for the per protocol and engaged populations, similar sized effects on child receptive language and attention. There was no evidence of benefit of dialogic book-sharing for the other areas of child development; we suggest that specific intervention components need to be added to standard dialogic book-sharing to effect change in these areas.

“You Had This Clean Window, But It was Glued Shut”: Identifying the Needs of Parents and Providers of Children and Youth with Autism Spectrum Disorders in Rural Areas Through a Life Course Perspective

“You Had This Clean Window, But It was Glued Shut”: Identifying the Needs of Parents and Providers of Children and Youth with Autism Spectrum Disorders in Rural Areas Through a Life Course Perspective

Evaluating Outdoor Nature-Based Early Learning and Childcare Provision for Children Aged 3 Years: Protocol of a Feasibility and Pilot Quasi-Experimental Design.

Systematic reviews have demonstrated the scarcity of well-designed evaluations investigating outdoor nature-based play and learning provision for children in the early learning and childcare (ELC) sector among global Western countries. This study will examine the feasibility and acceptability of the programme and the evaluation design of outdoor nature-based play and learning provision across urban ELC settings in a Scottish metropolitan city. Six ELC settings with different outdoor nature-based play delivery models will be recruited. One trial design will be tested: a quasi-experimental comparison of children attending three different models of outdoor play and learning provision. Measures will be assessed at baseline and five weeks later. Key feasibility questions include: recruitment and retention of ELC settings and children; suitability of statistical matching based on propensity score; completeness of outcome measures. Process evaluation will assess the acceptability of trial design methods and provision of outdoor nature-based play among ELC educators. These questions will be assessed against pre-defined progression criteria. This feasibility study will inform a powered effectiveness evaluation and support policy making and service delivery in the Scottish ELC sector.

Identifying Gaps for Service Provision in Children and Young People With Learning Disability and Challenging Behaviours And/or Mental Health Needs

AimsChildren and adolescents with learning disability need multi-disciplinary input when they present with challenging behaviours or mental health disorders. This patient group needs specialist skills from the clinicians and professionals to support and meet their needs. There is no commissioned Child and Adolescent Learning Disability Mental Health Service (CAMHS) in Waltham Forest and support comes from Specialist Tier 3 generic CAMHS which comprises of Emotional Difficulties Pathway, Neurodevelopmental Disorders Pathway and recently developed Behaviour Pathway which mostly comprises of specialist parenting training/interventions. To identify gaps in service provision for children and young people with learning disability presenting with challenging behaviours and/or mental health needs in Waltham Forest as there is no formally funded CAMHS learning disability service in the locality.MethodsAll children and young people under 18 with learning disability under Waltham Forest CAMHS with ASD/ADHD and other neurodevelopmental disorders who meet the project criteria are included. Project criteria include 1) Main diagnosis of Learning Disability (Including clients with Learning difficulty (global), likely to have low IQ with cognitive impairment.), with or without associated other Neurodevelopmental disorders (e.g., ASD, ADHD or tics) or other mental health disorders and 2) Engages in challenging behaviours. Challenging behaviours defined as behaviours significantly limiting engagement in daily & family life, education and/or social activities, and have persisted for at least a period of 3 months. Data were collected from electronic recoding system of individual patients; using a data collection sheet on level of learning disability; comorbid neurodevelopmental or emotional and mental health disorders; profession of allocated clinician; joint working with discipline; involvement with social care; allied health professionals input; presenting difficulties and severity; CETR or hospital admissions; referral to National services; What interventions offered (Medications, Behaviour assessment and/or interventions); if medications offered, was it used as first line and how long for; parents’ view on medication management.ResultsAs we have expected, medication management were used as first line and there were limited offers of behaviour support. Joint working with social care, speech therapy and occupational therapy but with limited input especially occupational therapy in cases with high sensory needs. It was unclear with the cognitive assessment and diagnosing the learning disability in the population under 16s.ConclusionThere is a service gap for CAMHS learning disability population and more joint working needed among relevant health professionals.

Parent-Provider Communication in Hospitalized Children with Advanced Heart Disease

Communication between parents and providers of children with cardiac disease is essential to parental decision-making. This study explored how parents of hospitalized children with advanced heart disease perceived communication with their child's providers. We performed a prospective survey study of parents and physicians of children with advanced heart disease age 30days to 19years admitted to the hospital for > 7days over a 1-year period at a single institution (n = 160 parent-provider pairs). Descriptive statistics were primarily used and Fisher exact tests and kappa statistics were used to assess agreement. All parents rated communication with their child's care team as excellent, very good, or good, but 56% of parents reported having received conflicting information. Parental perception of "too many" people giving them information was associated with overall poorer communication and less preparedness for decision-making. One-third (32%) of parents felt unprepared for decision-making, despite 88% feeling supported. Parents and physicians showed poor agreement with respect to overall adequacy of communication, receipt of conflicting information, and evaluation of the most effective way for parents to receive information. Interventions involving physician communication training and proactive assessment of parent communication preferences may be beneficial.

Health care provider support and factors associated with breastfeeding beyond infancy: A cross-national study.

Breastfeeding beyond infancy (12months) remains atypical in the United States, United Kingdom, Canada, and Australia, and the role of health care providers is unclear. The objective of this study was to compare women's perceptions of provider support and other factors affecting breastfeeding beyond infancy across countries, among women who had each successfully breastfed at least one child that long. Women completed an online questionnaire distributed via La Leche League, USA (2013), about sources and ratings of support for breastfeeding for their oldest child who was breastfed at least 12months and participant demographics. Multivariable log-binomial regression was used to compare ratings of health care provider support and the importance of 13 factors by country. Some similarities and many differences were observed across countries in support received from providers, whereas modest or no differences were observed in the importance women placed on factors like health benefits and enjoyment of breastfeeding. Of 59581 women, less than half discussed their decision to breastfeed beyond infancy with their child's provider. United Kingdom women rated their comfort in discussing breastfeeding beyond 12months with their providers and the support received as lower than United States women. Canadian women gave lower ratings than United States women, but inconsistently. Australian women rarely differed from United States women in their responses. Providers' recommendations were not important to the decision to breastfeed beyond infancy, especially for United Kingdom women. Rates of breastfeeding beyond infancy are low in these countries; improving provider support may help achieve global breastfeeding goals.

The new normal: parental use of online health communities in the NICU.

The aim of this study was to identify if and why NICU families use online health communities (OHCs) and to assess how participation in these virtual spaces impacts relationships between parents and their child's medical team. Surveys were administered to eligible persons. Quantitative analysis was conducted using standard statistical methods. Publicly accessible posts from the platform Reddit were aggregated and analyzed for recurring themes. In all, 58.3% (n = 141) of NICU parents surveyed endorsed OHC use, primarily for the purpose of connecting with other NICU families and alleviating distress regarding their child's health. Risks of OHCs as discussed in previous studies including health information privacy and medical misinformation were similarly identified. However, parents did not report a harmful association between OHC use and their relationship with their child's providers, with only 2.8, 4.3, and 2.8% of participants reporting an overall negative effect of OHC use on communication, trust, and confidence, respectively. OHCs are a commonly used resource that help NICU families build communities and reduce anxiety. These data suggest that OHCs do not inherently pose a threat to the parent-provider relationship and should be validated by the medical team as a valuable potential resource, while acknowledging the legitimate risks that exist. Use of OHCs is increasingly common among NICU parents; however, it has been met with concern by many medical professionals. Existing literature has not yet explored the effect on dynamics in the NICU. Overall, our data show that OHCs have become a vital resource for families looking to build community among NICU parents and reduce anxiety. Though risks do exist around patient privacy and access to medical misinformation, fears regarding the impact of OHC use on parent-provider relationships may be largely unfounded. By using data to demonstrate how OHCs benefit the NICU parent experience, we hope to reframe OHC use and allow physicians to validate engagement and therefore mitigate legitimate concerns.

Racial differences in HPV vaccine uptake based on provider recommendations

<h3>Objectives:</h3> The purpose this study was to evaluate racial differences in HPV vaccine uptake and the impact of healthcare providers' recommendations on parents' decision to vaccinate their children. <h3>Methods:</h3> This was a population-based survey in rural Alabama (Escambia County) in 2019. A 16-page questionnaire was developed based on questions from the Behavioral Risk Factor Surveillance System (BRFSS) and other sources. Specific focus was placed on HPV vaccine uptake and healthcare access. Participants included parents with at least one child between the ages of 9 and 18 and were recruited proportionally from the nine Census Tract regions in the county. The questionnaire was anonymous and participation was voluntary. Statistical analysis was performed using SPSS v.25. <h3>Results:</h3> A total 329 individuals were interviewed with 151 non-Hispanic Whites and 178 non-Hispanic Blacks included. Other ethnicities and races were not included and comprised <10.0% of patients. 39.7% of White parents and 41.0% of Black parents had been advised by a healthcare provider to have their child vaccinated against HPV. There was no difference between groups if they were ever advised to get the HPV vaccine (p=0.2). The provider's recommendations were largely the same for both groups, but Black parents compared to White parents were significantly more likely to report that the healthcare provider explicitly said that their child should get the vaccine (76.7% vs 48.3%; p=0.001). Black parents compared to White parents were significantly more likely to follow their child's provider's recommendation and get their child vaccinated that day or schedule it based on the recommendations (68.4% vs. 84.9%; p=0.02). Black parents were also significantly more likely to get the impression that it was urgent to get their child vaccinated than White parents (p=0.004). While the majority of parents in both groups got the impression that the vaccine was important, 76.7% of White and 61.6% of Black parents got the impression that it was optional. <h3>Conclusions:</h3> Recommendations for getting children vaccinated against HPV is still low in Alabama. Black parents were more likely than White parents to get the impression from their provider that the HPV vaccine was urgent and that they should get their child vaccinated. A large portion of both groups of parents also got the impression that the vaccine was optional. It is imperative that healthcare providers continue to counsel parents on HPV vaccination and encourage the importance of it in order to increase uptake.

Engaging Caregivers and Providers of Children With Sickle Cell Anemia in Shared Decision Making for Hydroxyurea: Protocol for a Multicenter Randomized Controlled Trial.

BackgroundSickle cell anemia (SCA) is a genetic blood disorder that puts children at a risk of serious medical complications, early morbidity and mortality, and high health care utilization. Until recently, hydroxyurea was the only disease-modifying treatment for this life-threatening disease and has remained the only option for children younger than 5 years. Evidence-based guidelines recommend using a shared decision-making (SDM) approach for offering hydroxyurea to children with SCA (HbSS or HbS/β0 thalassemia) aged as early as 9 months. However, the uptake remains suboptimal, likely because caregivers lack information about hydroxyurea and have concerns about its safety and potential long-term side effects. Moreover, clinicians do not routinely receive training or tools, especially those that provide medical evidence and consider caregivers’ preferences and values, to facilitate a shared discussion with caregivers.ObjectiveThe aim of this study is to understand how best to help parents of young children with sickle cell disease and their clinicians have a shared discussion about hydroxyurea (one that considers medical evidence and parent values and preferences).MethodsWe designed our study to compare the effectiveness of two methods for disseminating hydroxyurea guidelines to facilitate SDM: a clinician pocket guide (ie, usual care) and a clinician hydroxyurea SDM toolkit (H-SDM toolkit). Our primary outcomes are caregiver reports of decisional uncertainty and knowledge of hydroxyurea. The study also assesses the number of children (aged 0-5 years) who were offered and prescribed hydroxyurea and the resultant health outcomes.ResultsThe Ethics Committee of the Cincinnati Children’s Hospital Medical Center approved this study in November 2017. As of February 2021, we have enrolled 120 caregiver participants.ConclusionsThe long-term objective of this study is to improve the quality of care for children with SCA. Using multicomponent dissemination methods developed in partnership with key stakeholders and designed to address barriers to high-quality care, caregivers of patients with SCA can make informed and shared decisions about their health.Trial RegistrationClinicalTrials.gov NCT03442114; https://clinicaltrials.gov/ct2/show/NCT03442114International Registered Report Identifier (IRRID)DERR1-10.2196/27650

Assessing Parents' Communication of Weight and Weight Management from Clinic to Home.

Background: Family-oriented therapies are the gold standard of childhood obesity treatment, yet little is known about if or how information gathered by one parent from a health care provider is translated to the home. We assessed how families of children and adolescents with overweight and obesity communicate weight-related information received from their provider to family members not present at the visit. Methods: Parents and children (9-18 years old, N = 112) completed the McMaster's Family Assessment Device Communication Subscale (FADc) and investigator-derived questions describing weight-related communication practices with family members. We used descriptive statistics to describe communication practices and separate logistic regression models to assess associations of communication practices with parent-reported FADc, child BMI z-score, child sex, parent BMI, household income, and site. Results: Most parents discuss with other family members: their child's weight (60.4%) or weight management discussions with the child's provider (57.9%). Median parent FADc score was 2.0 (IQR 0.5). The most common facilitator to weight-related conversations was understanding what the provider said (95.1%). Higher FADc score (worse communication) was associated with whether parents ask other family members' opinions about weight information received from their child's provider [odds ratio 0.22 (95% confidence interval 0.05-0.99)]. Higher income was associated with many healthy communication practices. Conclusions: Slightly more than half of parents discuss with family members what their provider said regarding their child's weight. More effort must be placed on aiding parents in relaying information from the provider to other family members in the home to encourage family lifestyle changes and alleviate childhood obesity.

Evaluation of a Vaccine-Communication Tool for Physicians

To evaluate a Kaiser Permanente Northern California physician training tool entitled "Effective Communication without Confrontation" aimed at improving communication with vaccine-hesitant parents, building trust, and alleviating physician stress surrounding vaccination visits. Trainings were held May to July 2015. Pre- and post-training surveys assessed physician comfort and perceived effectiveness in communicating with vaccine-hesitant parents. We measured vaccination coverage at the 2-, 4-, and 6-month well-child visits, and days undervaccinated at 9months of age. We compared vaccination rates before and after the training. Of 415 physicians who received training, 249 completed post-training surveys. Physicians reported that the training helped them feel "much more or more" comfortable talking with parents who are unsure (72.3%), want to delay (73.9%), or refuse (63.5%) vaccinations and "much more or more" effective at persuading parents who are unsure (67.5%) or want to delay vaccinations (61.4%). They reported feeling "the same or less" effective persuading parents who refuse vaccinations (66.3%). Vaccine coverage remained unchanged and high from before to after the training (95%-96%), as did parent satisfaction with his or her child's provider (4.73/5.00). The Effective Communication without Confrontation training did not increase vaccine coverage, but did improve physicians' comfort and perceived effectiveness communicating with most vaccine-hesitant parents and may help to ease potentially stressful vaccination visits.

Isolation in Parents and Providers of Children With Chronic Critical Illness.

An increasing number of children with medical complexity spend months or more in PICUs, lending to isolation for their parents and providers. We sought to better describe the experiences of parents and providers of children with chronic critical illness specifically around isolation during PICU admission. In-person interviews and surveys of pediatric critical care providers and parents of children with chronic critical illness. Interview transcripts were analyzed for themes. Academic institution; PICU. Seven PICU physicians, eight nurse practitioners, and 12 parents of children with chronic critical illness. Surveys and semi-structured interviews. PICU providers acknowledge feeling medically isolated from children with chronic critical illness, fueled by a lack of chronic critical illness training and burnout. Providers also perceive medical isolation in parents of children with chronic critical illness manifesting as a declining level of parental engagement. Parents did not feel medically isolated in our study. Providers also perceive social isolation in families of children with chronic critical illness, identifying the child's protracted disease and lack of tangible support systems as contributing factors. Parents self-reported adequate social supports but scored high on depression scales suggesting a disconnect between perceived and actual support. Both parents and providers acknowledge that the child's chronic critical illness could be a source of support. PICU providers perceived social and medical isolation in parents of children with chronic critical illness; however, parents did not endorse either directly. A majority of parents showed signs of depression despite reporting good social support. Providers reported feeling medically isolated from children with chronic critical illness and their families related to burnout and insufficient training. Novel methods to address these issues are needed.

The Development of Ironchild: A Web-Based Intervention to Improve Adherence in Children with Iron Deficiency Anemia

INTRODUCTION Iron deficiency anemia (IDA) affects approximately 3% of children 1 to 3 years of age and is associated with poor neurocognitive outcomes. Children of Hispanic/Latino ethnicity, from primarily Spanish-speaking homes, and/or those of low socioeconomic status, are disproportionately affected. Oral iron therapy for 3 to 6 months is considered standard care therapy and mitigates these effects. Yet non-adherence often results in treatment failure, prolonging the treatment course and negative health consequences of IDA. Limited previous work has focused on interventions to improve adherence to iron therapy. Behavior change interventions, particularly when designed within a theoretical framework, can improve rates of treatment adherence. Our objective was to design a theoretically-based behavioral intervention to improve adherence to oral iron therapy in young children with nutritional IDA. METHODS Formative research was conducted via a mixed-methods study of 20 children with nutritional IDA and their primary caretaker. Demographic information, including number of children and caregivers in the home, was obtained from the primary caregiver. Clinical aspects of patients' IDA diagnosis and iron therapy were obtained from the electronic medical record. Semi-structured interviews with caregivers were conducted to characterize barriers to and facilitators of iron therapy. A framework for a technology-based intervention, named IRONCHILD, was created to coincide with clinical visit time points over a three-month period. Results from the formative research, along with constructs from the self-determination theory of motivation (autonomy, competence, relatedness), informed message content for the intervention scripts. This theory was selected because the degree to which its three principle constructs (basic psychological needs) are met drives levels of motivation to perform a specific behavior such as medication adherence. Three scripted online intervention sessions were developed, professionally translated into Spanish, and then animated by a professional animation and web design studio. Audio recording with a professional bilingual voice actor provided the narration for online sessions. RESULTS IRONCHILD is an interactive website with specific message content designed to be delivered at three standard of care clinical visits (Figure). At the initial visit, participants are introduced to a relational agent or virtual health educator, Maria, who is a pediatric nurse and mother of a child formerly treated for IDA. Maria provides an introduction to the overall program format and content and guides each session. Participants next view a Topic Introduction animation that provides an overview of the diagnosis of IDA, its clinical consequences, and a typical treatment course with oral iron therapy. This is followed by two unique content segments that provide information on (1) dietary counseling and (2) administration of oral iron therapy. Following each of the content segment, participants view question/response options, make a selection, and receive feedback. At the end of the session, participants select goal(s) related to therapy adherence for the interval between clinical visits. The second session provides two additional content segments that focus on (1) problem-solving for difficulties related to medication administration and (2) identifying motivating factors to adhere to therapy. The third session allows users to access all previous content and provides closing information about adhering to any ongoing treatment recommendations from their child's provider. Between visits, access to the website occurs via a unique username and password caregivers can use to logon to the website and view previous sessions. All aspects of IRONCHILD are available in both English and Spanish. Finally, an administrative dashboard for IRONCHILD captures program usage information as families log onto the program and navigate the sessions (e.g., number of log-ins; responses to question prompts; goals set; goal attainment). CONCLUSIONS IRONCHILD is a theoretically-based online intervention designed to improve adherence to oral iron therapy in caregivers of young children with nutritional IDA. Further research is needed to assess the effectiveness of the intervention on adherence as well as factors that affect implementation into routine clinical care.

Perceptions of Pediatric Primary Care Among Mothers in Treatment for Opioid Use Disorder.

To assess receipt of anticipatory guidance and family-centered care during well-child care (WCC) for children of mothers with opioid use disorder (OUD). Cross-sectional survey of 157 mothers receiving treatment for OUD who had a child < 3years old and received primary care. Survey items evaluated (1) receipt of anticipatory guidance on 15 topics during WCC for the participant's child and (2) whether WCC was family-centered. The percentage of participants who reported guidance for each topic and the distribution of responses on family-centered items were calculated. A Pearson correlation was conducted to evaluate the association between the total number of topics for which anticipatory guidance was received and the family centeredness summary score. Receipt of anticipatory guidance varied by topic, ranging from 59% for guidance on childcare to 98% for guidance on safe sleep. Less than two-thirds of mothers reported that their child's provider "always" knew their child's medical history (56%), listened carefully (58%), clearly explained things (61%), and respected the mother (62%). Less than half reported that the provider spent enough time with them, and less than one-third reported that they were asked for their viewpoints. Anticipatory guidance and family-centeredness scores were positively correlated (r = 0.22, P = 0.006). Mothers with OUD report gaps in anticipatory guidance on important WCC topics, and limited family-centered care for their children. Further research may focus on refinements to the delivery of care for this population.