Caregivers Of Pediatric Patients Research Articles

Prevalence of social risk factors and social needs in a Medicaid Accountable Care Organization (ACO)

BackgroundHealth-related social needs (HRSN) are associated with higher chronic disease prevalence and healthcare utilization. Health systems increasingly screen for HRSN during routine care. In this study, we compare the differential prevalence of social risk factors and social needs in a Medicaid Accountable Care Organization (ACO) and identify the patient and practice characteristics associated with reporting social needs in a different domain from social risks.MethodsCross-sectional study of patient responses to HRSN screening February 2019-February 2020. HRSN screening occurred as part of routine primary care and assessed social risk factors in eight domains and social needs by requesting resources in these domains. Participants included adult and pediatric patients from 114 primary care practices. We measured patient-reported social risk factors and social needs from the HRSN screening, and performed multivariable regression to evaluate patient and practice characteristics associated with reporting social needs and concordance to social risks. Covariates included patient age, sex, race, ethnicity, language, and practice proportion of patients with Medicaid and/or Limited English Proficiency (LEP).ResultsTwenty-seven thousand four hundred thirteen individuals completed 30,703 screenings, including 15,205 (55.5%) caregivers of pediatric patients. Among completed screenings, 13,692 (44.6%) were positive for ≥ 1 social risk factor and 2,944 (9.6%) for ≥ 3 risks; 5,861 (19.1%) were positive for social needs and 4,848 (35.4%) for both. Notably, 1,013 (6.0%) were negative for social risks but positive for social needs. Patients who did not identify as non-Hispanic White or were in higher proportion LEP or Medicaid practices were more likely to report social needs, with or without social risks. Patients who were non-Hispanic Black, Hispanic, preferred non-English languages or were in higher LEP or Medicaid practices were more likely to report social needs without accompanying social risks.ConclusionsHalf of Medicaid ACO patients screened for HRSN reported social risk factors or social needs, with incomplete overlap between groups. Screening for both social risks and social needs can identify more individuals with HRSN and increase opportunities to mitigate negative health outcomes.

Interviewing Teen Parents: Simulated Patient Experience for Clinical Education and Outreach.

Many medical students' initial experience obtaining a history from a pediatric patient happens in their clerkship years. There is a shift in medical education to provide early clinical experiences to train physicians. To increase the exposure to pediatric history in the pre-clinical years, we developed this simulation-based session involving students in their second year of medical school. They are tasked with eliciting a history from a babyprovided by a teenager who functions both as a standardized patient (SP)and the parent of the infant. Our goal was to have second-year medical students learn and practice interviewing an adolescent while obtaining history about an infant to assist in the transition to Year three Pediatric clerkship. Collaborating with the Office of Diversity at our medical school, we recruited students registered in medical academies in public middle and high schools in our county and asked them to be part of this simulation-based activity. A majority of these medical academy students are underrepresented in medicine (URiM). The students functioned as SPs for pre-clerkship medical studentswhile gaining exposure to a career in medicine and the medical school environment. The medical students obtained a history, with faculty providing formative feedback, followed by documentation of the encounter. Medical students felt they gained skills to communicate with caregivers of pediatric patients. They also practiced the skill of eliciting a pediatric history from an infant whose parent is a teenager. The middle and high school students that functioned as SPs gained a better appreciation for the medical education systemand felt that the experience was valuable for all parties involved. This session exposed pre-clerkship medical students to the nuances of eliciting a pediatric history from pediatric caregiverswhile also engaging URiM from middle and high school in the medical education process. This session could be used at other institutions to expand diversity in the medical fieldwhile also providing pre-clerkship medical students with pediatric experiences. This article was previously presented as an oral presentation at the AAMC Group on Education Affairs (GEA) Virtual Regional Spring Meeting on April 21, 2021.

Comprehension and compliance with discharge instructions among pediatric caregivers

BackgroundGood comprehension and compliance with the discharge instructions are vital to the patient for effective care of their own health at home. This study planned to assess the prevalence of non-comprehension and non-compliance with discharge instructions among caregivers of pediatric patients. MethodsA cross-sectional study was conducted in the pediatric department of Christian Medical College & Hospital, Punjab, India, from January 2022 to May 2022. For assessment of comprehension, a face-to-face interview was conducted with caregivers at the time of discharge from the hospital, and compliance was assessed while the patient appeared for a follow-up visit. English/Hindi or Punjabi speaking primary caregivers of children aged ≤12 years and discharged from the hospital with more than 1 medication were eligible to include in this study. ResultsA total of 100 caregivers of pediatric patients were recruited in the study. The majority of patients (62%) were females. The mean (±SD) age of patients was 4.6 (±5.5) years and the mean (±SD) age of caregivers were 32 (±6.4) years. The majority (78%) of caregivers were mothers. The prevalence of non-comprehension for medications, diet and follow-up plans were 27%, 9.3%, and 4% respectively, while the prevalence of noncompliance with medications, diet, and follow-up plans were 70%, 15%, and 14% respectively. ConclusionNon-comprehension and non-compliance with discharge instruction was prevalent among caregivers of pediatric patients. Various measures need to be taken by healthcare professionals to improve comprehension and compliance among caregivers.

Economic burden and catastrophic cost among people living with sickle cell disease, attending a tertiary health institution in south-east zone, Nigeria.

Out-of-pocket spending and lack of adequate health policy support for people living with sickle cell disease in Nigeria may predispose to high economic burden and catastrophic cost. The objective of the study was to evaluate the economic burden and catastrophic cost of sickle cell disease patients in a Nigerian tertiary health institution. In this study, a cross-sectional descriptive survey design was used to study a sample of 149 sickle cell disease patients managed at University of Nigeria Teaching hospital Enugu, South east Nigeria. A structured pre-tested interviewer-administered questionnaire was used to collect primary data from adult participants and caregivers of paediatric patients. Data collection lasted for three months. The major findings were median monthly economic burden of approximately N76, 711 (US$385) per person. Of this, outpatient cost constituted approximately 88%. Admission, drugs and blood transfusion constitute the major contributors to the economic burden experienced by the sickle cell disease patients in the study. All socio-economic status groups suffered catastrophic expenditure but the poorest quartile had the highest incidence: 61% at 40% threshold, 71% at 30% threshold and at 88% at 10% threshold. Conclusion: economic burden was high for sickle cell disease patients who also suffered high catastrophic costs due to the impact of out-of-pocket expenditure. People living with sickle cell disease need financial protection especially for the poorest since they buy from the same market and incur same costs. Policy decision making to assist the sickle cell disease patients cope with cost of care is needful in Nigeria.

Health-related Internet Use by Caregivers of Children and Adolescents With Cancer.

Caregivers of children with cancer have needs for information and social support related to their child's diagnosis. The internet serves as a resource to help meet these needs. There is growing interest in health-related internet use (HRIU) by caregivers of pediatric patients as the internet rapidly evolves. This survey study describes patterns of internet use by caregivers of children with cancer and examines associations between socioeconomic status and internet use. 114 caregivers participated between 2014 and 2016. The majority (82%) reported frequent general internet use, but fewer (25-54%) reported frequent HRIU. Very few respondents (4%) reported difficulty accessing the internet; those reporting difficulty were more likely to report lower income, public/no insurance, and lower educational attainment. There were no consistent associations between socioeconomic status variables and frequency of HRIU. Less than half (43%) of caregivers reported that their internet use raised questions that they discussed or planned to discuss with the child's nurse or doctor, and only 4% reported having changed medical decisions based on information found on the internet. We conclude that caregivers of children with cancer engage in HRIU, and this is an area for improvement in oncology anticipatory guidance and family-centered care.

381 Assessing the ease of use and adherence of topical corticosteroid drug delivery devices in caregivers of pediatric patients with atopic dermatitis

Topical corticosteroids are the mainstay of treatment for atopic dermatitis (AD) and when used as directed, are highly effective. Upwards of 50% to 88% of children and adolescents are non-adherent with their prescribed regimen. In addition, inaccurate dosing of topical steroids is a large source of treatment failure. Existing studies exploring the barriers and interventions in adherence place the blame and responsibility on patients and clinicians to improve outcomes. Little is known about topical drug delivery devices as a source of non-adherence, specifically issues concerning inaccurate dosing.

Burden Among Caregivers of Pediatric Patients with Neurofibromatosis Type1 (NF1) and Plexiform Neurofibroma (PN) in the United States: A Cross-Sectional Study.

IntroductionPatients with neurofibromatosis type 1 (NF1) may develop plexiform neurofibromas (PNs) that can cause disfigurement, pain, and dysfunction, and may even be life-threatening. Studies have indicated NF1-PN can substantially impact the quality of life (QoL) of pediatric patients. However, research on caregiver burden is scarce.MethodsCaregivers of pediatric patients ages 2–18 years with NF1-PN in the USA were recruited through the Children’s Tumor Foundation to participate in an online cross-sectional survey (December 2020–January 2021). Caregiver burden was measured using the Zarit Burden Interview (ZBI), and productivity loss from patientcare was measured using the Work Productivity and Activity Impairment questionnaire, adapted for caregiving (WPAI:CG).ResultsNinety-five caregivers were recruited with a median age of 44.0 years. Most were female (88.4%), white/Caucasian (85.3%), and did not have NF1 or PN (86.3% and 89.5%, respectively). Commonly reported health conditions among caregivers include anxiety (48.4%) and depression (34.7%). On the ZBI (range 0–88; higher = greater burden), mean (SD) scores were 23.0 (13.8) and 12.7% of caregivers reported moderate–severe (scores 41–60) or severe burden (scores 61–88). Fifty-six caregivers were employed and working in the 7 days prior to completing the WPAI:CG. They reported missing an average of 6.9% of their working hours and an average reduction of 17.3% of on-the-job effectiveness, contributing to 22.3% loss in work productivity. Among all 95 caregivers, an average of 17.2% of regular daily activities were impaired.ConclusionsThe burden among caregivers of pediatric patients with NF1-PN is considerable and underscores an unmet need for better disease management.

Unmet psycho-social needs of parents of children who die from cancer.

e24005 Background: Cancer is the leading disease-related cause of death for children in the United States, but there is limited data on the needs of caregivers who have lost a child to cancer, and few evidence-based bereavement interventions exist. Parents whose children die from cancer have increased rates of depression, anxiety, and health problems. Prior studies have shown that bereaved parents desire continued contact with their child’s medical team and to connect with parents who have had similar losses. Methods: This is a cross sectional survey of primary caregivers of pediatric patients who died from cancer and were cared for at a moderate size pediatric oncology program (50 new diagnoses per year) from 2010 to 2020. Participation was solicited by mail in English and Spanish. Research packets contained five surveys: Demographic Survey, The Needs Assessment for Family Caregivers Bereaved to Cancer, Quality of Life Survey (SF-36), Brief Grief Assessment, and Social Support Questionnaire (SSQ-6). Interested subjects also participated in a semi-structured, in-depth qualitative interview. Results: One hundred six potentially eligible families were identified. 27 families consented, 10 were without a known address, and 2 opted out. Twenty research packets and 9 interviews were completed, representing 19% of the population of interest and 23% of the invited population. The sample was diverse in gender, age, income, and education level, but not race. The greatest unmet needs were finding meaning in the death, personal wellness, and social activities. Caregivers reported good physical functioning but poor emotional well-being and fatigue. Complicated grief was most profound in the interference (grief interfering with life) and intrusion (images and thoughts of the child) domains. Quantity of social support correlated with satisfaction with social support (P = 0.02). Bereaved parents with greater unmet needs were found to have poorer quality of life in the following domains: energy/fatigue (P = 0.005), role limitations due to emotional problems (P = 0.01), pain (P = 0.01), and emotional well-being (P = 0.02). Greater unmet needs did not correlate to more complicated grief (P = 0.30) or satisfaction with social support (P = 0.08). Interview themes elicited were inadequate current bereavement services, necessary support for siblings, desired contact with the medical team, and connections to other bereaved caregivers. Conclusions: Findings support the need for implementation of more intensive evidence-based bereavement programs for families of children who died from cancer. The data suggests that interventions targeting emotional well-being and increased social supports, in the form of connections to the medical team and other bereaved families, will be the most efficacious in mitigating poor bereavement-related outcomes.

In Anticipation of Sharing Pediatric Inpatient Notes: Focus Group Study With Stakeholders

BackgroundPatient portals are a health information technology that allows patients and their proxies, such as caregivers and family members, to access designated portions of their electronic health record using mobile devices and web browsers. The Open Notes initiative in the United States, which became federal law in April 2021, has redrawn and expanded the boundaries of medical records. Only a few studies have focused on sharing notes with parents or caregivers of pediatric patients.ObjectiveThis study aimed to investigate the anticipated impact of increasing the flow of electronic health record information, specifically physicians’ daily inpatient progress notes, via a patient portal to parents during their child’s acute hospital stay—an understudied population and an understudied setting.MethodsA total of 5 in-person focus groups were conducted with 34 stakeholders most likely impacted by sharing of physicians’ inpatient notes with parents of hospitalized children: hospital administrators, hospitalist physicians, interns and resident physicians, nurses, and the parents themselves.ResultsDistinct themes identified as benefits of pediatric inpatient Open Notes for parents emerged from all the 5 focus groups. These themes were communication, recapitulation and reinforcement, education, stress reduction, quality control, and improving family-provider relationships. Challenges identified included burden on provider, medical jargon, communication, sensitive content, and decreasing trust.ConclusionsProviding patients and, in the case of pediatrics, caregivers with access to medical records via patient portals increases the flow of information and, in turn, their ability to participate in the discourse of their care. Parents in this study demonstrated not only that they act as monitors and guardians of their children’s health but also that they are observers of the clinical processes taking place in the hospital and at their child’s bedside. This includes the clinical documentation process, from the creation of notes to the reading and sharing of the notes. Parents acknowledge not only the importance of notes in the clinicians’ workflow but also their collaboration with providers as part of the health care team.

YouTube™ for information on paediatric oral health instructions.

Parents and caregivers of paediatric patients usually tend to search for health information on social networks and other online platforms. At this point, the quality and reliability of these sources play an essential part in maintaining the oral health of paediatric patients. The recent study aimed to analyse the reliability, quality and content of YouTube™ videos on paediatric oral health instructions; assess the efficacy of these videos; and help health providers lead the parents accessing accurate information on the subject mentioned. The searching term was detected as 'children oral health' (Google Trends Application). The first 150 videos were taken into the study. Six excluding criteria were used, and 40 videos have lasted for the further examinations. Content headings were determined according to the AAPD guidelines on paediatric oral health. The content analysis scores, reliability scores and Global Quality Score were calculated for each of these 40 videos. SPSS 26statistical software was used in the statistical analysis process of the data; p<0.05 was considered statistically significant. The recent study results showed that according to content analyses, the videos were classified as 'poor' content with the mean values 4.07 (±1.32). The mean reliability score 2.96 (±0.69) has shown that the reliability of the videos was moderate. Mean Global Quality Score values were 2.95 (±0.73), which means the subjects were moderate quality. The mean reliability of the rich content videos (3.39±0.59) and the Global Quality Score of them (3.43±0.62) were statistically higher compared to the average values of the poor content videos (respectively; 2.73±0.64; 2.69±0.66) (p<0.05) The average number of likes, dislikes, length, interaction index and viewing rate of rich content videos were higher than the same features of poor content videos (p<0.05). The videos with rich content were determined in the first 50 videos listed for analyses, and the distribution of the included videos on the list was equally. The present study concluded that the YouTube™ videos providing oral health instructions for paediatric patients and their parents had poor content, medium quality and reliability. Although all the listed content headings were not mentioned in the videos, the content of them still may be useful and educational for individuals. However, dental hygiene practitioners and dentists should be aware of the need in this area and put more effort into improving the YouTube™ videos on children's oral health in a more detailed way regarding content headings, quality and reliability.

Communication Gaps Between Providers and Caregivers of Patients in a Pediatric Emergency Department.

Communication gaps between the healthcare team and caregivers of pediatric patients can result in negative consequences. This study aims to identify specific words and phrases used in a pediatric emergency department (ED) that are unclear or confusing to caregivers. Research assistants at the Primary Children’s Hospital recorded caregivers’ responses to the question, “What words or phrases have been used during this visit that are unclear or don’t make sense to you?” Across all steps in the care process, 62 of 220 participants (28.2%) reported unclear words and phrases used by the healthcare team. Responses recorded after the discharge step had the highest proportion of communication problems, followed by the initial evaluation and then the update step (χ2 [2, N = 220] = 6.30, P = .043). Themes among responses included ED logistics, signs/symptoms, the diagnostic process, treatment/procedures, general confusion, and language barriers. These results provide feedback to pediatric emergency medicine providers about potential communication gaps and point to a need for further efforts to train providers in the practice of high-quality communication.

Social-emotional functioning in pediatric hydrocephalus: comparison of the Hydrocephalus Outcome Questionnaire to the Behavior Assessment System for Children.

Hydrocephalus can impact all areas of health, including physical, cognitive, and social-emotional functioning. The social-emotional health of children who have had surgery for hydrocephalus is not well characterized. In this study, the authors sought to examine social-emotional functioning using the Behavior Assessment System for Children, Third Edition (BASC-3) and the Hydrocephalus Outcome Questionnaire (HOQ) in 66 children aged 5 to 17 years. Caregivers of pediatric patients with hydrocephalus completed the BASC-3 and the HOQ. BASC-3 internalizing, externalizing, and executive functioning caregiver-reported scores were compared with the BASC-3 normative sample using one-sample t-tests to evaluate overall social-emotional functioning. BASC-3 scores were correlated with the social-emotional domain of the HOQ using Pearson's r to determine if the HOQ accurately captured the social-emotional functioning of children with hydrocephalus in a neurosurgery setting. BASC-3 and HOQ scores of children with different etiologies of hydrocephalus were compared using the Kruskal-Wallis one-way analysis of variance to determine if differences existed between the following etiologies: intraventricular hemorrhage secondary to prematurity, myelomeningocele, communicating congenital hydrocephalus, aqueductal stenosis, or other. Children with hydrocephalus of all etiologies had more difficulties with social-emotional functioning compared with normative populations. Children with different hydrocephalus etiologies differed in executive functioning and overall HOQ scores but not in internalizing symptoms, externalizing symptoms, or social-emotional HOQ scores. The social-emotional domain of the HOQ correlated more strongly with the BASC-3 than did the physical and cognitive domains. These results have provided evidence that children who have had surgery for hydrocephalus may be at increased risk of social-emotional and behavioral difficulties, but etiology may not be particularly helpful in predicting what kinds or degree of difficulty. The results of this study also support the convergent and divergent validity of the social-emotional domain of the HOQ.

Prevalence of Social Risk and Social Need in a Medicaid Accountable Care Organization

Research ObjectiveAdverse social determinants of health (SDoH) are associated with higher chronic disease prevalence and healthcare utilization. In 2018, Mass General Brigham implemented SDoH screening in its Medicaid Accountable Care Organization (ACO) to measure social risk (specific adverse social conditions associated with poor health) and social need (request for assistance). The overlap between patient‐identified social risk and social need is not well understood. The goals of this study were: (1) to compare prevalence of social risk and social need in primary care and (2) to identify patient factors associated with differential prevalence.Study DesignWe conducted a cross‐sectional study of patient responses to a SDoH questionnaire from February 2019 to February 2020. The questionnaire assessed social risk in eight domains (food, housing, medication, transportation, utilities, family care, employment, education) as well as social need by a request for more information in these domains. The questionnaire was available in English or Spanish through a patient portal or on a tablet before routine primary care visits. We applied descriptive statistics to the prevalence of social risk and social need, stratified patient responses by language and race/ethnicity, and compared patient groups using a chi‐squared test.Population StudiedAdult and pediatric primary care patients in151 practices in the Mass General Brigham Medicaid ACO. Mass General Brigham is a large health system across Massachusetts including both academic medical centers and community physician organizations.Principal FindingsThe study population included 27,500 individuals who completed 30,820 screenings, including 15,219 (55.3%) caregivers of pediatric patients. Of individuals screened, 14.9% were Spanish‐speaking, 32.1% identified as Hispanic or Latino, and 10.2% identified as non‐Hispanic Black or African American. Of completed screenings, 13,736 (44.6%) were positive for 31 social risk and 2954 (9.6%) for33 risks; 5879 (19.1%) were positive for social need and 4863 (35.4%) for both social risk and social need. Notably, 1016 (6.0%) screenings were positive for a social need but negative for social risk. Patients who were Spanish‐speaking, Hispanic, or non‐Hispanic Black reported significantly more social risk and social need, and reported social need while screening negative for social risk significantly more than English‐speaking (9.2% v. 5.4%, p &lt; 0.001) and White patients (8.2% and 8.6% v. 3.8%, p &lt; 0.001) respectively, both overall and in sub‐domains of housing, transportation, utilities, employment, and education.ConclusionsAlmost half of Medicaid ACO patients screened for SDoH reported social risk or social need, with incomplete overlap between these groups. Individuals who identified as Hispanic or non‐Hispanic Black, or who were Spanish‐speaking, had more social risk, social need, and more often reported social needs without reporting risk. Screening for social risk and social need identify different patient populations and screening for both identifies more individuals with adverse SDoH, particularly among historically disadvantaged demographic groups.Implications for Policy or PracticeScreening for social risk alone is not sufficient to identify all patients with adverse SDoH. We encourage health systems and Medicaid programs to consider screening tools for social risk and patient‐centered questions for social need. Identifying both populations increases the opportunity for intervention and mitigation of negative health effects.

Screening for Interpersonal Violence: Missed Opportunities and Potential Harms

Screening for interpersonal violence is used in healthcare settings to identify patients experiencing violence. However, using unvalidated screening tools may misclassify patients' experience with violence. The Center for Medicare & Medicaid Innovation adapted a previously validated intimate partner violence screening tool for use in assessing interpersonal violence and retained the tool's original scoring rubric, despite the new tool's broader scope. This study evaluates the scoring system for detecting safety concerns. This was a cross-sectional survey of a convenience sample of adult patients and caregivers of pediatric patients at 7 primary care clinics and 4 emergency departments (2018-2019). Surveys included the adapted 4-item Hurt Insult Threat Scream tool. Questions are scored by frequency on a Likert scale (1=never; 5=frequently). Scores of 11-20 are considered positive for safety concerns. Two-sided Fisher's exact tests were used for descriptive analyses. Data analyses occurred in 2019-2020. Of 1,014 participants, 66 (6.5%) reported any frequency of physical violence. Of these, 54 (81.8%) did not reach the threshold score of 11. Of the 1,014 participants, 93 (9.2%) reported any frequency of physical violence or being threatened with harm; 76 of 93 participants (81.7%) scored <11. Using the original scoring criteria for the adapted Hurt Insult Threat Scream, >80% of participants reporting physical violence did not screen positive for potential safety concerns. The scoring criteria did not reliably identify participants experiencing or at high risk for violence. To improve patient safety, the adapted Hurt Insult Threat Scream scoring rubric should be updated on the basis of stakeholder input and additional validation studies.

Patient information portal for congenital aortic and pulmonary valve disease: a stepped-wedge cluster randomised trial

BackgroundIn response to an increased need for patient information in congenital heart disease, we previously developed an online, evidence-based information portal for patients with congenital aortic and pulmonary valve disease....

Spacer microbial contamination and asthma outcomes: case series

Objective The primary method of drug delivery to treat asthma is through pressurized metered dose inhalers (pMDI). Asthma guidelines recommend that providers prescribe a spacer for all patients using pMDI. The objective of this study was to examine whether microbial contamination of spacer devices is associated with poor asthma outcomes. Methods This was a cross-sectional, single-center case series of seven pediatric patients with persistent asthma who had previously been prescribed a spacer. Spacers were swabbed with sterile cotton and samples assessed for bacterial/fungal growth. Parents completed a questionnaire including Asthma Control Test (ACT) and asthma control was assessed by an Allergist/Immunologist physician. Results Two (n = 2) children’s parent-completed ACT score indicated poorly controlled asthma and three (n = 3) patients were noted to be poorly controlled by the physician. All but one caregiver reported cleaning the spacer with most reporting (n = 5) that they cleaned their child’s spacer monthly and one (n = 1) reporting cleaning it every two weeks. One spacer had detected Candida albicans. There was not a statistically significant association between ACT score and microbial growth (p > 0.05). Conclusion Most spacers in a pediatric sample were not contaminated, despite lack of consistent cleaning, as recommended by spacer manufacturers. Providers and pharmacists should discuss proper cleaning of spacers with caregivers of pediatric patients.

A IMPORTÂNCIA DO ESPAÇO LÚDICO NO AMBIENTE HOSPITALAR

O período de internação pode tornar-se traumático na vida da criança, pois geralmente a mesma está em um ambiente diferente do habitual. A Lei n°11.104 de 2005 tornou obrigatória a implementação de brinquedotecas nos hospitais. No entanto, nem todos os hospitais têm suporte para tal função. Objetivo: demonstrar a importância do espaço lúdico para crianças hospitalizadas. Trata-se de uma pesquisa de campo com abordagem qualitativa, com parecer do Comitê de Ética nº 3.337.363, fazendo parte de uma Pesquisa PIBIC. Foram realizadas entrevistas com acompanhantes de crianças de dois hospitais do município de Cascavel, sendo ao todo 20 entrevistas com acompanhantes de pacientes pediátricos, 10 no hospital onde há espaço lúdico (Hospital A) e 10 no hospital onde não há espaço lúdico (Hospital B). Os resultados obtidos vêm, de acordo com a literatura, demonstrando positivamente o aproveitamento do espaço lúdico e ao contrário dos que não possuem espaço lúdico. Além disso, foi possível averiguar a relação do uso de tecnologias no ambiente hospitalar. Evidencia-se que há aproveitamento do Espaço Lúdico para a criança em condição hospitalar de modo a colaborar com o bem-estar do cliente pediátrico.

The psychosocial profile of family caregivers of children with chronic diseases: a cross-sectional study

BackgroundA family caregiver is defined as a person who has a significant emotional bond with the patient; this caregiver is a family member who is a part of the patient’s family life cycle; offers emotional-expressive, instrumental, and tangible support; and provides assistance and comprehensive care during the chronic illness, acute illness, or disability of a child, adult, or elderly person. The objectives of this study were to identify the psychosocial profiles of family caregivers of children with chronic diseases and to establish the relationship between these profiles and sociodemographic variables.MethodsA cross-sectional study was conducted involving 401 family caregivers of children with chronic diseases at the National Institute of Health in Mexico City. The participants responded to the Sociodemographic Variables Questionnaire (Q-SV) for research on family caregivers of children with chronic disease and a battery of 7 instruments that examined anxiety, caregiver burden, family support, depression, resilience, parental stress, and the World Health Organization Well-Being Index.ResultsA hierarchical cluster analysis and its confirmation through a nonhierarchical cluster analysis confirmed two profiles of caregivers of pediatric patients with chronic diseases. Profile 1, called Vulnerability of family caregivers, is characterized by high levels of anxiety, depression, parental stress and caregiver burden, accompanied by low levels of family support, resilience, and well-being. Profile 2, called Adversity of family caregivers, shows an inverse pattern, with high levels of family support, resilience, and well-being and low levels of anxiety, depression, parental stress and caregiver burden. The sociodemographic characteristics are similar for both profiles, with the exception of the caregiver’s family type. Profile 1 shows more single-parent caregivers, while profile 2 includes more caregivers with a nuclear family. However, the type of family did not reach significance for predicting the caregiver’s profile in a bivariate logistic regression model.ConclusionsThe psychosocial profile of family caregivers of children with chronic diseases can be structured according to their psychosocial characteristics. Although no causal factors were detected that define criteria for belonging to one or another profile, the characteristics identified for each indicate the need for specific and differentiated intervention strategies for families facing adversity, risk and vulnerability during a child’s disease.

What Caregivers Want: Preferences for Behavioral Health Screening Implementation Procedures in Pediatric Primary Care.

There has been a national push for universal psychosocial prevention screening in pediatric primary care. Implementation science highlights the importance of considering patients' perspectives when developing such procedures; however, minimal studies have examined this. The present study employed a mixed-methods design to examine caregivers of pediatric patients' (n = 149) preferences and comfort with psychosocial screening procedures. A subset of participants (n = 20) were interviewed to better understand reasons for responses. Results indicated that caregivers rated screening for physical health, development, emotion and behavior, caregiver adverse childhood experiences (ACEs), and child ACEs within primary care as important or very important. The majority of caregivers were not comfortable completing screenings in the waiting room and preferred the exam room. Caregivers primarily preferred the primary care provider to administer screenings and communicate results and recommendations. Parents also preferred the behavioral health provider to provide recommendations on emotion and behavior, parent ACEs, and child ACEs. Qualitative reasons for responses included relationship quality, knowledge of child, expertise, and desire for direct communication. Findings have implications for developing family-centered, trauma-informed practices within primary care, particularly among those within under-resourced rural communities.

Enfermedades respiratorias y gastrointestinales en pediatría: ¿cómo las manejan los padres en casa?

&lt;p&gt;&lt;span&gt;&lt;strong&gt;Objetivo:&lt;/strong&gt; identificar cómo los cuidadores de pacientes pediátricos manejan los síntomas respiratorios y gastrointestinales y analizar diferentes aspectos como su arraigo y seguridad; también el posible impacto de dichas prácticas en la comunicación entre cuidadores y pediatras. &lt;strong&gt;Métodos:&lt;/strong&gt; se realizó un estudio cualitativo, narrativo, desarrollado en el Instituto Roosevelt en Bogotá, Colombia, a través de doce entrevistas a cuidadores de pacientes pediátricos hospitalizados que cursaban con sintomatología respiratoria o gastrointestinal de forma aguda. Se indagó sobre el manejo inicial a dichos síntomas y su experiencia al compartir dichas prácticas con el médico tratante. &lt;strong&gt;Resultados:&lt;/strong&gt; el grupo entrevistado incluyó cuidadores entre los veinte y los 42 años, con diferentes niveles de escolaridad; se encontró una variabilidad en el tipo de tratamientos para atender los síntomas respiratorios y gastrointestinales. Dentro de esta variabilidad se identificaron prácticas benéficas, inocuas o riesgosas para el manejo de los síntomas señalados. Respecto a la comunicación, la mayoría de los cuidadores sienten que el médico no brinda un espacio para hablar del tema y en caso de hacerlo hubo un rechazo. &lt;strong&gt;Conclusiones:&lt;/strong&gt; se hallaron, por parte de los cuidadores, prácticas que coinciden con la postura médica, pero otras prácticas tenían alto riesgo para los menores y se deben corregir. Es necesario integrar y validar la narrativa del cuidador para disminuir prácticas peligrosas que pongan en riesgo la salud de los menores.&lt;/span&gt;&lt;/p&gt;