Caregivers Of Children Research Articles

Rib-on-pelvis deformity: a modifiable driver of pain and poor health-related quality of life in cerebral palsy.

Cerebral Palsy (CP) often presents with a sweeping thoracolumbar scoliosis and pelvic obliquity. With severe pelvic obliquity, the ribs come into contact with the high side of the oblique pelvis, termed rib-on-pelvis deformity (ROP). ROP can result in costo-iliac impingement, or pain associated with ROP, and can also adversely affect breathing and sitting balance. The goal of this study was to evaluate whether CP patients with ROP have worse health-related quality of life (HRQOL) before surgery and a greater improvement in HRQOL after surgery. A retrospective analysis of a prospectively collected, multicenter, international registry was performed for all nonambulatory patients with CP treated with spinal fusion with at least two-year follow-up. HRQOL was measured via the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD) questionnaire domains (0 = most disability, 100 = least disability). ROP was defined as having a rib distal to the superior portion of the iliac crest on preop upright radiographs. The ROP group and control group without ROP were compared regarding six domain scores and total score of CPCHILD. Multiple linear regression was used to control for curve apex location, major coronal Cobb angle, type of tone, and pelvic obliquity. 340 patients met inclusion criteria (52% female, mean age 14.0years). The mean major coronal Cobb angle was 81 degrees and mean pelvic obliquity was 22 degrees. 176 patients (51.8%) had ROP while 164 patients (48.2%) did not. ROP was independently associated with worse preoperative Positioning/Transfers/Mobility (PTM), Comfort & Emotions (C&E), and total CPCHILD score via the CPCHILD questionnaire (p < 0.05). Patients with preoperative ROP experienced a greater improvement in the C&E and PTM domains as well as total CPCHILD score than patients without ROP (p < 0.05). CP patients with rib-on-pelvis deformity experience more pain and worse HRQOL than patients without this deformity. These patients experienced a greater improvement in HRQOL after spinal fusion measured via the CPCHILD questionnaire.

A Qualitative Study Exploring Experiences in Caregiving for Patients With Advanced Wilson Disease.

BACKGROUND: Wilson disease (WD) is a rare disease characterized by impaired copper metabolism. It is usually diagnosed in children and has several distinct attributes that can make the caregiving experience different. The advanced stage of the illness is quite challenging, and caregiver experiences during this phase of the disease are underexplored. METHODS: The present study is an exploratory qualitative investigation with in-depth interviews aiming to understand the experiences of family caregivers of children with advanced WD receiving neuropalliative care services at a tertiary care hospital. Interviews from 7 family caregivers were recorded, transcribed, and analyzed using an inductive and interpretive approach. RESULTS: Family caregivers in the study were predominantly mothers. The major themes that emerged are: being a parent and the caregiver, uncertainty related to illness, financial implications, understanding the disease dynamics, constructive coping strategies, and extended family networks and societal influences. CONCLUSION: The experiences and the encounters of family caregivers of children with advanced WD are multifaceted. Their challenging experiences underscore the need for extended supportive services and neuropalliative nursing care to assist the caregivers and families, and navigate the process of treatment and rehabilitation for the child.

Assessment of the Quality of Life and Family Function in Attention Deficit Hyperactivity Disorder Caregivers in Al-Ahsa, Saudi Arabia.

Background Attention deficit hyperactivity disorder (ADHD) is the most prevalent neurobehavioral disorder in children and teenagers. The condition is debilitating, affecting numerous cognitive and behavioral processes and leading to substantial long-term consequences. Affected individuals, their families, and society as a whole bear a heavy functional, psychological, and financial cost. Aim The objective of this study was to evaluate the quality of life (QOL) among parents of children with ADHD diagnoses, as well as the burden and level of dysfunction in the family. Additionally, to ascertain the sociodemographic factors that influence these issues. Methods This cross-sectional study used an online survey to collect data from caregivers of children with a confirmed diagnosis of any type of ADHD who were exhibiting symptoms before the age of seven, speaking Arabic fluently and consented to take part in the study. The Arabic version questionnaire of the World Health Organization Quality of Life instrument (WHOQOL-BREF) was used to assess the QOL, and the Zarit Burden Interview questionnaire was employed to assess the degree of the experienced burden. Participants were recruited by a systematic random sampling method. Results A total of 103 ADHD caregivers were included in the study. A total of 89 out of 103 (86.4%) participants reported having various degrees of burden. There was a significant relation between the marital status of the caregiver and the degree of burden (p=0.024). Divorced caregivers were (4, 57.1%) severely burdened. Ninety out of 103 participants (87.4%) reported having dysfunctional families, and the majority of them (60, 60.1%) reported moderate family dysfunction. All quality-of-life domains were negatively impacted, with the environmental domain experiencing the most disruption. The overall four subdomains of QOLdid not differ significantly with various sociodemographic characteristics. Conclusion There was a high prevalence of burden and family dysfunctionamong caregivers of ADHD children. Marital status was associated with a significant impact on the level of burden.In addition, there was a detrimental influence on every aspect of quality of life, with the environmental domain suffering the most. It is important to take into account family therapy and other interventions that strengthen caregivers' and families' relationships.

Caregivers of children with asthma alarmed by climate change: a cross-sectional study.

Climate change poses significant health risks, with children being particularly vulnerable to its adverse health effects. Children with asthma are expected to have worsening disease due to increased exposure to heat, air pollution, mold from flooding, and pollen. Understanding caregiver perspectives on these health harms is crucial for informing public health policy and education. Therefore, we aimed to explore caregiver perceptions of climate change-related health risks to children with asthma. In this cross-sectional study, a survey instrument was created and distributed to caregivers of children with asthma during their visits to pulmonology clinics located in an urban northeastern US setting and via email. Among 198 completed surveys, 78% of participants reported high levels of concern about climate change, with most respondents agreeing that climate change has already impacted their child's health. Examples provided by respondents included worsening asthma control due to air pollution, wildfire events, pollen exposure, and rapid changes in weather. Respondents who self-identified as female had greater concern. Most respondents agreed that these topics should be further discussed with their child's doctor. Although, barriers to such discussions were noted by the respondents. Caregivers of children with asthma have high levels of concern regarding climate change and report adverse impacts on their child's asthma. Clinicians caring for children with asthma should consider discussing the respiratory health impacts of climate change with caregivers. However, barriers to these discussions need further examination.

Beyond babysitting: an analysis of the quality of childcare service in Ethiopia

ABSTRACT Empirical evidence underscores the importance of investing in early childhood care to ensure its quality. This study examined the quality of child care in day-care centers in Bahir Dar and Gondar cities, Amhara region, Ethiopia, employing an embedded mixed-methods approach. Utilizing descriptive and inferential statistics, including t-tests, regression analysis, and thematic analysis, the research assessed both distal quality – encompassing environmental and staffing conditions – and proximal quality – focusing on caregiver–child interactions. The findings revealed significant deficiencies in distal quality, including inadequate space, activities, and staff qualifications. Proximal quality was also found to be lacking, with government centers exhibiting higher levels of harshness in caregiver interactions compared to private centers. Key factors influencing interaction quality were staff education, experience, and child-to-worker ratios. Despite existing regulatory standards, their enforcement was found to be inadequate. The study recommends that policymakers enhance and enforce regulations, improve staff training and invest in professional development. Further research should explore regulatory enforcement challenges and assess the long-term impacts of training improvements on care quality.

Quality of life and associated factors among primary caregivers of children and adolescents with neurodevelopmental disorders attending public hospitals in Addis Ababa, Ethiopia: a cross-sectional study.

Neurodevelopmental disorders are a set of disorders that negatively affect the acquisition of skills in a variety of developmental domains, including motor function, learning, socialization, language and cognition. However, there is no information available on the standard of living of Ethiopian primary caregivers of children and adolescents with neurodevelopmental disorders. Therefore, this study aimed to assess the quality of life (QOL) and associated factors among primary caregivers of children and adolescents with neurodevelopmental disorders in Addis Ababa, Ethiopia. A cross-sectional study was conducted during 1-30 May 2022. Systematic random sampling was used to obtain 352 samples. QOL was measured using the WHO Quality of Life Brief. The gathered information was coded, entered into EpiData 4.6.0.2 and analyzed with SPSS version 26. Multiple linear regression analysis was used to identify the correlates of QOL and the strength of the correlation was measured by β coefficient with 95% CI. The mean score of the overall QOL was 62.61 with a SD of 5.17. The mean (±SD) scores for the physical health, psychological, environmental and social relationship domains of primary caregivers were 57.36±9.98, 66.98±9.39, 66.06±12.91 and 60.02±9.14, respectively. Age was significantly associated with physical domain (β=-0.25, 95% CI -0.43 to -0.07) and with environmental domain (β=-4.57, 95% CI -9.06 to -0.09). Being divorced/widowed was negatively associated with psychological health (β=-2.99, 95% CI -5.82 to -0.17) and social health (β=-0.62, 95% CI -1.33 to -0.10). The presence of medical illness was negatively associated with the physical health domain (β=-4.32, 95% CI -7.64 to -2.91) and the environmental domain (β=-3.11, 95% CI -5.71 to -0.51). Poor social support was negatively associated with psychological health (β=-3.25, 95% CI -5.89 to -0.61) and the social health domain (β=-3.39, 95% CI -11.3 to 4.6), and moderate social support (β=8.62, 95% CI 3.15 to 14.09) was positively associated with physical health. Depression (β=-6.32, 95% CI -11.96 to -0.67) and anxiety (β =-3.07, 95% CI -5.80 to -0.34) were negatively associated with physical health and the psychological health domain, respectively. The findings from this study indicate that all dimensions of QOL of primary caregivers of children and adolescents with neurodevelopmental disorders in this study setting were compromised. Being divorced or widowed, lack of formal education, age, average monthly income, poor social support, depression, anxiety and the presence of medical illness were factors associated with QOL in all domains. This requires integrating a bio-psychosocial perspective, a positive mental health strategy and pharmaceutical therapies to enhance QOL for caregivers of children and adolescents with neurodevelopmental disorders.

Abstract B078: Tailoring human papillomavirus (HPV) vaccine outreach for rural and Hispanic communities in Washington state: A modified Boot Camp Translation approach

Abstract Introductory sentences indicating the purposes of the study: Using a modified version of Boot Camp Translation (BCT), a validated community participatory approach, we co-created locally relevant and culturally appropriate human papillomavirus (HPV) vaccination materials and messages for parents and caregivers of HPV vaccine-eligible children in Washington state. Brief description of pertinent experimental procedures: The HPV vaccine, recommended for children starting at age 9, reduces the risk of HPV infection and HPV-related cancers. However, HPV vaccine rates are significantly lower in rural regions compared to urban areas. In partnership with Kaiser Permanente Center for Health Research, the Huntsman Cancer Institute, and Sea Mar Community Health Centers, a large federally qualified health center in Washington state, we used a modified BCT approach to elicit input from parents and caregivers of HPV-vaccine eligible children to develop materials and messages that motivate parents to vaccinate their children. Eligible participants were parents or caregivers of children between the ages of 9-15 who had at least one vaccination, spoke English or Spanish, and were able to participate in the entire BCT process. Two BCT sessions were conducted (one in English and one in Spanish), both consisting of three meetings over a four-month period. The sessions included a five-hour in-person meeting in Aberdeen, Washington (English) and Bellingham, Washington (Spanish), and two one-hour follow-up virtual calls for each language. The in-person meetings included HPV vaccine education by Sea Mar providers and an expert in HPV research, discussions on HPV knowledge, perceptions, and barriers to vaccination, and small group discussions to generate HPV messages and materials. The follow-up calls gathered feedback on drafted materials and messages. Summary of the new unpublished data: Eight parents or caregivers participated in the English session and nine participated in the Spanish session. Key themes identified to incorporate in messages and materials included: stressing the benefits of vaccination, highlighting research on the vaccine’s safety and efficacy, including statistics and images of both girls and boys, reporting local statistics, spelling out HPV in materials, and emphasizing the words “prevent” and “protection” from cancers/infections later in a child’s life. The preferred materials and dissemination methods included: fact sheets and brochures (available in the clinic, mailed home, or in school nurses’ offices), posters (displayed in the clinic lobby and exam rooms), and animated videos (played on the clinic lobby TV and texted to parents’ phones). Participants also requested live phone calls from Sea Mar to discuss the importance of the vaccine and assist with vaccine scheduling. Final materials will be showcased.Statement of conclusions: We used a modified BCT approach to incorporate participant feedback to develop HPV vaccine messages and materials and identified preferred dissemination channels for rural communities in Washington state. Citation Format: Priyanka Gautom, Jamie H. Thompson, Jennifer S. Rivelli, Ludy Villegas, Anna C. Edelmann, Katherine Vaughn, Becca Slagle, Stephen Gubler, Kaila Christini, Amanda F. Petrik, Gloria D. Coronado, Deanna Kepka. Tailoring human papillomavirus (HPV) vaccine outreach for rural and Hispanic communities in Washington state: A modified Boot Camp Translation approach [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B078.

Impact of Adverse Experiences on Maternal Trust in Pediatric Primary Care

ABSTRACT Caregiver trust in medical providers and the healthcare system is essential to pediatric primary care. Relatively little research has been conducted on contributors to caregivers’ trust, or lack thereof, in aspects of pediatric primary care, especially for those who have experienced adversity. To examine the relationship between caregiver trust and adverse childhood experiences (ACEs) in pediatric primary care, we measured four aspects of trust in 76 caregivers (74 mothers, 2 aunts) of children at an urban primary care clinic. We ran correlation and regression analyses to examine the relationship between the Philadelphia ACEs and caregiver trust. Results indicated that specific ACEs (e.g. experiencing abuse) were associated with caregiver mistrust in the healthcare system and lower trust in the child’s pediatrician. Some ACEs (e.g. community discrimination) were associated with only general trust. Thus, the relationship between trust and trauma varied based on the levels of trust and types of ACEs.

Evaluating Access to Health Care in Mothers and Caregivers of Children under Five Years of Age in Rural Communities of Yucatán, Mexico.

Populations in rural communities have more limited access to health care and attention than urban populations. The present study aimed to evaluate barriers to access to health care in mothers and caregivers of children under five years of age, twelve months after an educational intervention. The study was carried out from February to September 2022, and 472 mothers from eight communities in the state of Yucatán, in the southeast of the United Mexican States, participated. A comparative analysis was carried out on help-seeking times, obstacles to reaching it, and illnesses in children. The results revealed that the main barriers to access to care were long times to decide to seek help, lack of financial resources to pay for the transfer to another health unit, lack of someone to accompany the mother or caregiver when the child needed be transferred, and lack of transportation for the transfer. Disease knowledge remained at different levels in the eight communities; the significant differences occurred in four communities, one specifically for heart defects. It was concluded that, in the rural populations studied, there are barriers to access to health care which have to do with neglected social determinants, such as those related to conditions of gender, income, social support network, and the health system. Access to health care must be universal, so public health interventions should be aimed at reducing the barriers that prevent the population from demanding and using services in a timely manner.

Characterizing medical decision-making in sickle cell disease during childhood: Qualitative perspectives of caregivers.

Sickle cell disease (SCD) is the most common genetic disorder among children. As the most common type of SCD, sickle cell anemia (SCA) is associated with severe complications across the lifespan. As parents/caregivers hold primary disease management responsibility during childhood, their involvement in disease management activities, including medical decision-making, is critical to successful and timely management of pediatric SCD. However, the processes through which caregivers make SCD-related decisions remain unknown. The current paper examined caregivers' decision-making processes and priorities when managing their child's SCD. Parents and primary caregivers (N=27) of children with SCA (ages 0-12) completed individual semi-structured qualitative interviews exploring links between caregivers' decision-making and both daily and ongoing SCA management practices. Data were transcribed verbatim, cleaned, systematically coded, and analyzed using applied thematic analysis. Participating caregivers were primarily Black or African American (88.9%), mothers (81.5%), publicly insured (55.6%), and single (51.9%). Caregivers described medical decision-making across acute symptom response, preventive disease management, and treatment initiation and/or discontinuation. Across these contexts of disease management, caregivers overarchingly prioritized protecting and improving their child's quality of life. Caregivers' medical decision-making processes were influenced by their SCA management experience, acquisition of SCA knowledge, and trust in medical providers. The extent to which these influences impacted caregivers' decision-making varied based on disease severity, disease management experience, and time since diagnosis. Findings highlight how processes underlying caregivers' decision-making are directly influenced and informed by caregivers' lived experiences. Future work should develop provider-initiated collaborative interventions to support medical decision-making.

Effectiveness of Coping Strategies for Stress and Anxiety for Parents (Caregiver) of Cerebral Palsy children using Thumb Abduction Splint

Effectiveness of Coping Strategies for Stress and Anxiety for Parents (Caregiver) of Cerebral Palsy children using Thumb Abduction Splint

Provider Perspectives on Techniques for Healthy Eating Promotion and Dietary Behavior Change in Caregiver–Child Dyads

Provider Perspectives on Techniques for Healthy Eating Promotion and Dietary Behavior Change in Caregiver–Child Dyads

Contingency and Synchrony: Interactional Pathways Toward Attentional Control and Intentional Communication

In this article we examine how contingency and synchrony during infant–caregiver interactions help children learn to pay attention to objects and how this, in turn, affects their ability to direct caregivers’ attention and to track communicative intentions in others. First, we present evidence that, early in life, child–caregiver interactions are asymmetric. Caregivers dynamically and contingently adapt to their child more than the other way around, providing higher-order semantic and contextual cues during attention episodes, which facilitate the development of specialized and integrated attentional brain networks in the infant brain. Then, we describe how social contingency also facilitates the child's development of predictive models and, through that, goal-directed behavior. Finally, we discuss how contingency and synchrony of brain and behavior can drive children's ability to direct their caregivers’ attention voluntarily and how this, in turn, paves the way for intentional communication.

“Build back the confidence”: qualitative exploration of community experiences with polio vaccination in the Covid-19 context in Cameroon and Ethiopia

BackgroundIn 2020, as the Global Polio Eradication Initiative worked to address outbreaks of vaccine-derived poliovirus Type 2, particularly in sub-Saharan Africa, the Covid-19 pandemic suspended routine immunization campaigns worldwide. There were concerns about how Covid-19 – and the introduction of Covid-19 vaccines – might influence uptake of the oral polio vaccine (OPV). To inform communications strategies, we conducted a qualitative study to explore insights from community stakeholders into how Covid-19 influenced perceptions of OPV and vaccination campaigns.MethodsWe conducted 32 focus group discussions with caregivers of children under 5 and polio frontline workers as well as 22 in-depth interviews with healthcare practitioners and social influencers in Cameroon and Ethiopia. In each country, we purposively sampled stakeholders per discrete eligibility criteria from one urban (Yaoundé and Addis Ababa) and one peri-urban site (Bafia and Adama).ResultsWe found that the Covid-19 pandemic and related precautionary measures introduced new challenges for OPV campaigns in Cameroon and Ethiopia, including reduced caregiver confidence in routine immunizations and an erosion of trust between caregivers and frontline workers. A salient concern among caregivers was that Covid-19 vaccines might be delivered in place of OPV. When asked how to maximize community support for future OPV campaigns, stakeholders suggested to rebuild caregiver trust for frontline workers; use a variety of information sources to ensure consistent messaging on vaccination reaches caregivers in a timely manner; increase remuneration, resources, and training for frontline workers; and leverage existing community influencers and groups.ConclusionsDespite the challenges to vaccination campaigns experienced during the Covid-19 pandemic, it was anticipated that the Polio Programme would continue to experience community support for OPV with appropriate messaging and community coordination. These efforts would “build back the confidence” among caregivers and other community stakeholders regarding community-based vaccination campaigns. Social and behavior change approaches that leverage clear, consistent messaging from multiple trusted platforms could address caregiver trust and dismantle mis/dis-information that creates confusion surrounding vaccines.

The development, feasibility and acceptability of Empower-Autism: A new psychoeducational and psychotherapeutic programme for caregivers of children recently diagnosed with autism.

What is already known about the topic?Parents and carers face many challenges following their child's autism diagnosis. They often look for information, and social and emotional support. There has been relatively little research into how best to provide this support and this means that there is no evidence to guide the delivery of services. Studies have suggested that an approach called Acceptance and Commitment Therapy can help parents and carers with their adjustment and emotional wellbeing.What does this article add?This article describes the development of a new group-based programme to address the diverse needs of caregivers after their child's autism diagnosis. The new programme was developed with caregivers, autistic people and professionals. It was called Empower-Autism and contained lots of information about autism and strategies to support autistic children, alongside therapeutic aspects based on Acceptance and Commitment Therapy. The programme was delivered to 29 parents/carers in three groups. Attendance at the groups was satisfactory. Both parents/carers and facilitators liked and valued the programme and found it accessible. They made suggestions for improvements. After the programme, parents and carers described improved wellbeing. They felt more positive and more connected to other people. They also described parenting their child in a more informed and sensitive way.Implications for practice, research or policyThe new programme is being tested within a large clinical trial. If there are positive results, the programme could be recommended for delivery and this would address an important gap in evidence-based practice.

Covid-19 and Role of the Caregivers of the Children with Autism Spectrum Disorder (ASD) in Dhaka, Bangladesh

Background: Children with Autism Spectrum Disorder (ASD) are the most vulnerable group in the society, who have suffered a lot during the Covid-19 pandemic. Objectives: The main objective of this study is to explore the strategies taken by the caregivers of the ASD children during the Covid-19 pandemic. Methodology: The study followed a holistic mixed-method approach. Simple random sampling was used to select the respondents to conduct a survey for the research. For quantitative analysis Chi-square test has been conducted to examine the association between the variables. For the qualitative part of the study, 5 Key Informant Interviews (KIIs) were carried out from the experts (such as therapists and teachers) by constructing 15 open-ended questions. Results: Analysis of data revealed the strategies taken by the caregivers of the ASD children during the Covid-19 pandemic such as- assigning therapists, providing teletherapy, making session plans and taking online classes. It has also disclosed the behavioral changes noticed by the caregivers of the ASD children such as hyperactivity, lack of attention. In this research, for quantitative analysis a total 248 data were collected from the caregivers (parents) of the ASD Children in Dhaka City and most of the respondents (80%) were the mother of the children. 98% of the parents observed some sorts of behavioral changes and 90% of them followed different strategies for their mental and physical development during the Covid-19 pandemic. Conclusion: To put it simply, sufferings of the ASD children and their caregivers know no bounds during the pandemic. The caregivers fought many more challenges than we can imagine from the outside.

A parenting program delivered through existing community-based peer groups to improve early child development in Homabay and Busia Counties, Kenya: study protocol for a cluster-randomized controlled trial

BackgroundPoor early childhood development (ECD) is a major global health concern that is associated with various adverse outcomes over the lifecourse. Parenting interventions especially during the earliest years of life can benefit ECD. However, there is limited evidence from Kenya about the effectiveness of parenting interventions for improving ECD outcomes especially across rural disadvantaged communities. This paper describes the study protocol for an impact and implementation evaluation of a community-based group parenting program that aims to improve ECD in rural Kenya.MethodsWe will conduct a cluster-randomized controlled trial to determine the effectiveness of a parenting program for caregivers of young children in Homabay and Busia counties in Western Kenya. Sixty-four village clusters will be randomly assigned to either the parenting intervention arm or the waitlist control arm with stratification by county. In each village, 10 primary caregivers with a child aged 0–24 months will be enrolled. The parenting program will be delivered through existing peer groups within communities whereby caregivers will receive counseling and psychosocial support to enhance their parenting skills and wellbeing to in turn promote ECD. The intervention curriculum comprises 21 sessions targeting various nurturing care messages, including early learning, responsive caregiving, child nutrition, health, protection, and caregiver mental health. Group sessions are facilitated by a trained volunteer biweekly for a total of 11 months. The primary trial outcome is an overall measure of ECD using the Global Scales of Early Development long form version. Secondary outcomes include various caregiver outcomes (e.g., parenting practices, mental health) and other child outcomes (e.g., socioemotional development, dietary diversity). All outcomes will be assessed at baseline and endline. We will also conduct a qualitative implementation evaluation at endline and interview various stakeholders to assess program fidelity, quality, and sustainability.DiscussionThis trial will evaluate the effectiveness of a parenting intervention on ECD and caregiving outcomes and assess program implementation quality as delivered through existing community-based peer groups. This study will provide rigorous evidence that can be used to inform scale-up of this program model that leverages existing community social networks and resources for improving caregivers’ parenting skills and promoting ECD in rural Kenya and other similar settings across LMICs.Trial registrationClinicalTrials.gov #NCT06165315. Registered on December 11, 2023.

Developmental Milestones for Children With Down Syndrome.

The American Academy of Pediatrics recommends that children and adolescents with Down syndrome receive anticipatory guidance regarding development and behavior. However, few tools provide specific guidance on developmental norms for children with Down syndrome. Our objective was to estimate age ranges at which children and adolescents with Down syndrome achieve developmental milestones to facilitate developmental screening by pediatric practitioners. We used standardized questionnaires to obtain information from clinicians and caregivers of children with Down syndrome who received care at the Boston Children's Hospital Down Syndrome Program between March 2018 and March 2023. Data included information from 2599 visits for 842 individuals with Down syndrome ages 2 months to 24 years. We used mixed-effects logistic regressions to predict the probability of achieving 25 specific developmental milestones with 15%, 30%, 45%, 60%, 75%, and 90% probability as a function of age. We further stratified results by individuals' sex. We present age norms for our study's population of people with Down syndrome for key milestones in academic, adaptive, language, and motor domains by calculating the ages at which milestone achievement was 75% probable. We then compare these norms to published norms for the general population. This study provides clinicians and families with age-based norms for achievement of key developmental milestones for children and adolescents with Down syndrome.

Bullying Involvement and Subtypes of Disabilities: Who is Likely to be Affected by What?

The current study uses latent class analysis (LCA) and binary logistic regression analysis to explore profiles of bullying and how they might be associated with the types of disabilities. LCA was used to determine a categorization of involvement in bullying among youth with various types of disabilities. Binary logistic regression analysis was conducted to explore how profiles of bullying involvement might be associated with types of disabilities. The study uses the 2016 National Survey of Children's Health, a large-scale survey completed on children's health, ages 0-17, in the United States. A total of 139,923 households were screened for eligibility. The study participants consisted of 50,212 caregivers of a child who completed the survey. Findings revealed that among caregivers of children without disabilities, 79.5% reported that their child was uninvolved, and 20.5% reported that their child was a victim of bullying. Children in the developmental disabilities, speech and/or language disorders, and learning disabilities groups, showed significant odds of being in the bullying victim group compared to those without any disabilities. The study did not find that children in any disability groups were likely to be in the perpetrator group.

The relationship of pain catastrophizing in principal caregivers of postoperative children with malignant bone tumors and children's kinesiophobia and pain perception: A cross-sectional survey

ObjectiveTo examine the phenomenon of pain catastrophizing among the principal caregivers of postoperative children with malignant bone tumors and explore its impact on pain perception and kinesiophobia in children. DesignA cross-sectional study design. MethodsUsing a cross-sectional study design, a questionnaire-based survey was conducted among 140 children with malignant bone tumors and their principal caregivers, who were admitted to a tertiary hospital in Shanghai from 2020 to 2023. Pearson's univariate and multiple regression analyses were conducted. The questionnaire included general data, the Parental Pain Catastrophizing Scale, the Short-Form McGill Pain Questionnaire, and the Tampa Scale of Kinesiophobia. ResultsThe frequency of pain catastrophizing for the principal caregivers was 16.8%. The frequency of kinesiophobia in children was 93.1%. The level of pain catastrophizing was positively correlated with the level of kinesiophobia and pain perception (r = 0.556, 0.614, p < 0.05). Multiple logistic regression analysis showed that the level of pain catastrophizing in principal caregivers was an important factor of kinesiophobia in children (B = 0.370, Std. = 0.119, Wald = 9.687, Ex (P) = 1.448, p = 0.002). Multiple linear regression analysis showed that the incidence of pain catastrophizing and the level of kinesiophobia were important influencing factors in pain perception (p < 0.05), with R2 = 0.272, adjusted R2 = 0.249, F = 11.579, and p < 0.001. ConclusionsThe level of pain catastrophizing in the principal caregivers was an important factor in postoperative kinesiophobia and pain perception in children with a malignant bone tumor. Practice implicationsIt is important to evaluate the patients' and their families' emotional changes and psychological needs during the perioperative period. Nurses play a crucial role in providing appropriate interventions for patients or families to reduce the negative pain experience and improve patients’ prognosis.