Parental Burden Research Articles

Preliminary Randomized Controlled Trial of the Supportive Parenting for Anxious Childhood Emotions Intervention for Highly Dependent Adult Children

Adults who do not work, pursue higher education, or live independently from their parents despite the absence of a diagnosed physical, neurodevelopmental, or intellectual disability are often referred to as having ‘failure to launch’ (FTL). This preliminary randomized controlled trial evaluated a new parent-based intervention for FTL: Supportive Parenting for Anxious Childhood Emotions for FTL (SPACE-FTL). Parents of adults with FTL were assigned to SPACE-FTL or a waitlist. Primary outcomes included feasibility, acceptability, treatment satisfaction, and the change in FTL status and symptoms. Secondary and exploratory assessments included parental burden, family accommodation, cost-of-illness, and the adult child’s anxiety and depression symptom severity. Trial completers’ satisfaction score was 28 (87.5% of the maximal score). Post-treatment, FTL was absent in 60% of cases; no change was noted in the waitlist. Symptom severity, parental burden, and family accommodation were significantly reduced. The study provides preliminary evidence that SPACE-FTL can address FTL.

Caregiver Burden, Parenting Stress and Coping Strategies: The Experience of Parents of Children and Adolescents with Osteogenesis Imperfecta.

Only a few studies, mainly qualitative thematic analyses of interviews, have dealt with the psychological experience of parents of children and adolescents with osteogenesis imperfecta (OI), a rare genetic syndrome involving skeletal fragility and increased exposure to bone fractures. The aim of the present study was to evaluate both negative (i.e., parental burden and parenting stress) and positive (i.e., coping strategies and perceived social support) experiences of parents related to their children's disease and behaviour. The participants were 34 parents of children and adolescents with OI who completed a specifically developed online survey assessing their psychological experience with caregiving, their perception of the severity level of their children's condition and any possible behavioural problems experienced by their children. Data analyses showed that 65% of the parents showed a clinical level of caregiver burden and nearly 30% a clinical level of parenting stress. Caregiver burden was related to the perceived severity level of the condition and the externalising problems shown by their children. Concerning the positive aspects of the parents' experience, a high level of perceived social support was connected to a lower level of parenting stress; the same did not happen for caregiver burden. Coping strategies were connected to stress and burden; in particular, a higher level of stress corresponded to a higher level of avoidance, and a higher level of burden corresponded to a higher level of positive attitude.

Factors affecting care burden and life satisfaction among parents of children with type 1 diabetes

AimParents in the caregiving role for children with type 1 diabetes (T1D) are affected from many aspects including physically, psychologically, socially, financially and spiritually. The aim of this study was to determine the factors affecting the care burden and life satisfaction of parents caring for a child with T1D and to examine the relationship between them. MethodThis research was completed with 293 parents of children with T1D aged 3–18 years, attending the pediatric health and diseases clinics in two state hospitals located in [redacted for peer review] from May 2023 to September 2023. For collection of data, a survey form, the Zarit Burden Interview (ZBI) and Adult Life Satisfaction Scale (ALSS) were used. Analysis of data used percentages, means, one-way ANOVA (post-hoc Tukey test), independent samples t-test, regression and correlation tests. Statistical significance level was accepted as p < 0.05. ResultsParents had mean care burden scale scores of 56.30 ± 12.4, with mean adult life satisfaction scale scores of 69.39 ± 11.61. According to the regression analysis results, the ZBI scores were affected by the child's general health status after T1D diagnosis, impact on responsibilities after T1D diagnosis and diabetes management skills (p < 0.05). ALSS scores were affected by the variables of caregiver assessment of health status before and after the child's T1D diagnosis, income level, impact on responsibilities after T1D diagnosis and diabetes management skills (p < 0.05). There was a negative weak level of significant correlation identified between the ZBI and ALSS total scores (r = −0.36; p < 0.05). ConclusionGeneral health status after receiving T1D diagnosis, impact on responsibilities after diabetes diagnosis and diabetes management skills are factors affecting the care burden and life satisfaction of parents. Additionally, a negative relationship was determined between parents' care burden and life satisfaction. Nurses should develop family-centered care plans and work to reduce factors increasing care burden while increasing life satisfaction.

The relationship between the caregiver burden and quality of life in parents of Turkish children with anorectal malformation or Hirschsprung's disease

BackgroundAnorectal malformation (ARM) or Hirschsprung's disease (HD) in children impact on parents' burden of care and quality of life (QoL). The aim of this study was to investigate the relationship between caregiver burden and QoL in parents of children with ARM or HD. Design and methodsThis cross-sectional study was conducted with 51 parents who completed the Zarit Burden Inventory (ZBI) and World Health Organization Quality of Life Scale-Short Form Turkish Version (WHOQOL-BREF-TR). ResultsThe mean (±SD) ZBI score was 33.6 (±12.7), and 47.1% of parents (n = 24) perceived their caregiver burden as mild, 31.4% (n = 16) as moderate, and 3.9% (n = 2) as severe. According to the multivariate linear regression, associated anomalies (β1 = 5.912), family income (β1 = −6.007), stoma care (β1 = 8.287), and diagnosis were identified to be significant determinants of caregiver burden. A negative, moderate, and significant relationship was identified between the ZBI scores and the physical domain (r = −0.417, p < .01), psychological domain (r = −0.421, p < .01), social relations domain (r = −0.398, p < .01), and environmental domain (r = −0.495, p < .01) scores of the WHOQOL-BREF-TR. ConclusionsThe mothers perceived their caregiver burden as mild. However, a significant number of parents suffer from moderate to heavy caregiver burden. An increase in the caregiver burden of parents reduces their quality of life. Practice implicationsHeightened awareness of the potential for caregiver burden and its association with quality of life among parents of children with ARM and HD may contribute to improved.

Factors affecting caregiver burden among parents of children with cancer: A path analysis.

To investigate the relationships between parental resilience, illness perception and pain catastrophizing as factors affecting caregiver burden among parents of children with cancer, based on the Transactional Model of Stress and Coping. Parents, as the primary caregivers of children with cancer, often face universal challenges. These include adverse health impacts, work, financial disruptions, strained social and family relationships, and the need for specialised support and intervention. A cross-sectional design using path analysis. The STROBE guidelines for cross-sectional studies were followed. An online questionnaire was distributed through Facebook pages operated by various organisations that support parents of children with cancer, such as 'The Israel Cancer Association', 'Giving Hope' and 'Hayim Association' from October 2021 to February 2022. The participants completed a questionnaire about demographic and child-related characteristics, resilience, illness perception, pain catastrophizing, social support and caregiver burden. Associations between the variables were explored using Pearson's correlations and path analyses. The study included 67 parents of children with cancer with an average age of 41.79 (SD = 6.31). The majority were mothers (n = 54, 80.6%) with a steady partner (n = 62, 92.5%). The level of caregiver burden was M (SD) = 25.00 (7.15) out of 48 possible, indicating a high burden level. Illness perception was directly positively associated with caregiver burden (β = .280, p = .017) and pain catastrophizing (β = .340, p < .01), and directly negatively with resilience (β = -.318, p < .01). Illness perception and pain catastrophizing serially mediated the relationship between resilience and caregiver burden among parents of children with cancer (β = -.190, p = .001). This study found that both illness perception and pain catastrophizing serially mediated the relationship between personal resilience and caregiver burden. To ease caregiver burden for parents of children with cancer, programmes should address their psychological and emotional needs, including managing perceptions of illness and coping with pain-related distress.

Psychological Burden Faced by Parents having Children with Thalassemia in a Teaching Hospital of Birgunj, Madhesh province

Introduction: Caring a child suffering from thalassemia is very stressful to parents. The study was aimed to identify the psychological burden of parents having children with thalassemia. Method: Cross-sectional study was done. The parents having children diagnosed with thalassemia and who were receiving service from Pediatric OPD, National Medical College were the study participants. Non-probability convenience sampling technique was used and sample size was 88. Data was collected through face-to-face interview using structured interview schedule. Data analysis was done in SPSS version 16. Chi-square test and odds ratio was used to examine the association. Result: Mean psychological burden score was 47.47 ± 10.9, and 71.6% of parents had a moderate level of psychological burden. Level of psychological burden was associated with parents’ sex (p=0.03), education level (p=0.024), and income (p=0.01). Odds ratio determined that psychological burden was 2.9 times higher (95% CI = 1.1-7.6) among mothers, 3.7 times higher (95% CI = 1.4-9.9) for the parents whose income was insufficient to get the needs met, and illiterate parents were 3.6 times and parents with primary to secondary level education were 1.6 time more likely to have psychological burden, while those with higher secondary or above level of education were less likely to perceive psychological burden (OR=0.3). Conclusion: More than two-thirds of the parents having children with thalassemia tend to have moderate levels of psychological burden. The measures to reduce psychological burden of parents should focus more towards mothers, those parents with low education level and with less income. Key words: Children, parents, psychological burden, thalassemia

유치원과 어린이집에 대한 부모 요구를 중심으로 한 유보통합 방안 제안

The purpose of this study is to identify the needs of parents for kindergartens and daycare centers in S city and to suggest ways to bridge the gap, and based on this, we intend to propose the direction of integration of kindergartens and daycare centers. In S city, most of the kindergartens are national and public kindergartens, and daycare centers consist of national and public kindergartens, private, workplace, and family daycare centers. It is an area that minimizes the burden on parents and exemplarily presents the operation model of public kindergartens. Therefore, it is intended to identify differences according to the use of parents who use national and public kindergartens and daycare centers, and to suggest ways to resolve them as a way to integrate kindergartens and daycare centers. A focused-group interview was conducted with 54 parents who send their children to kindergartens and daycare centers in S city. As a result, kindergarten parents were satisfied with the lack of parental burden, the operation of children-centered, play-centered curriculum, the sharing of children's learning with parents, the working environment of teachers with low stress index, sufficient and diverse facilities, and high-quality free meals. They were dissatisfied with the deviation of curriculum operation by teacher, specialized activities that are not diverse and high in quality, poor snacks, communication problems with teachers and kindergartens, poor working environment of teachers, and non-flexible operation hours. Parents of daycare centers were satisfied with the operation of various special activities, a variety of morning snacks, easy and comfortable communication, and flexible operating hours, and were not satisfied with the difference in the cost of parents' burden, special activities that are not high in quality, the quality of meals, narrow classroom, lack of communication about learning and growth, and poor teacher working environment. In conclusion, measures to bridge the gap between daycare centers and kindergartens are to ensure equal quality of kindergartens and daycare centers, equalization of curriculum operating hours, complete free education, and equal treatment of teachers.

Mental health and professional outcomes in parents of children with chronic kidney disease.

This study evaluated parenting stress, anxiety, and depression symptoms and their associated factors in parents of children with chronic kidney disease (CKD). This cross-sectional study compared parents of patients with CKD (0-18years) with a matched control group of parents of healthy children. Both groups completed the Parenting Stress Index - Short Form, the Hospital Anxiety and Depression Scale, and a sociodemographic questionnaire. The study group consisted of 45 parents (median age 39; 32 mothers) of CKD patients (median age 8; 36% female). Nearly 75% of children had CKD stages 2, 3, or 4, and 44.5% had congenital anomaly of the kidney and urinary tract. Five children (11%) were on dialysis, and 4 (9%) had a functioning kidney graft. Compared with parents of healthy children, more stress and anxiety symptoms were reported. Since the CKD diagnosis, 47% of parents perceived a deterioration of their own health, and 40% reduced work on a structural basis. Higher levels of stress, anxiety, and depression symptoms were associated with a more negative perception of own health, and more child medical comorbidities and school absence. This study showed higher levels of parenting stress and anxiety symptoms in parents of children with CKD compared with parents of healthy children. This was associated with a less positive perception of their own health, especially if the child had more medical comorbidities or more absence from school. Psychosocial interventions to reduce the parental burden should be integrated in the standard care of pediatric nephrology departments.

Postural-motor development, spinal range of movement and caregiver burden in Prader-Willi syndrome-associated scoliosis: an observational study.

Prader-Willi syndrome (PWS) is a rare genetic disorder characterized by hypothalamic dysfunction, hypotonia, cognitive deficits, and hyperphagia, primarily resulting from genetic abnormalities on chromosome 15. Among its varied manifestations, musculoskeletal issues, notably scoliosis, pose important challenges in management. This study aims to investigate differences in postural-motor development and spinal range of movement between preadolescents and adolescents with PWS, with and without scoliosis, while also exploring the potential impact of scoliosis on caregiving burden, an aspect yet to be thoroughly explored in existing literature. This observational study evaluated 13 individuals diagnosed with PWS, including 5 with scoliosis (PWS-Sc) and 7 without (PWS-NSc). Inclusion criteria comprised ages 8 to 18 years, confirmed PWS diagnosis through genetic testing, and scoliosis diagnosis. Anamnestic data, physical examinations, and surface measurements were collected, along with parental burden assessments using the Zarit Burden Interview (ZBI). Both groups displayed delays in achieving postural-motor milestones, with the PWS-Sc group exhibiting a more pronounced delay, although statistical significance was not achieved. The main curve magnitude in the PWS-Sc group averaged 31.5° Cobb, with 60% of cases presenting an S-shaped curve. Surface measurements of physiological curves did not differ significantly between groups, but the scoliosis-affected group exhibited lower lumbar extension values (p=0.04). The overall ZBI revealed higher scores in the PWS-Sc group, although statistical significance was not reached. However, significant differences were observed in single questions score evaluating aspects such as social life and caregiver uncertainty (p=0.04 and p=0.03, respectively). Despite the small sample size, delays in achieving postural-motor milestones, particularly in individuals with scoliosis, were observed. The differences recorded in lumbo-pelvic movement suggest that tailored interventions may be beneficial. The heightened caregiving burden in the scoliosis group underscores the need for targeted support. Early intervention and ongoing monitoring should be important for accurate diagnosis and appropriate care, potentially with psychological support for caregivers.

Qualitative analysis of mothers’ perception related to the delivery of information regarding preterm births

BackgroundPreterm birth is a major health issue due to its potential outcomes and socioeconomic impact. Prenatal counseling is of major importance for parents because it is believed that the risk of preterm birth is associated with a higher parental mental burden. Nowadays in France, the content and delivery of antenatal counseling is based on personal experience since there is a lack of official guidelines. The goal of the study was to evaluate maternal perception of antenatal information delivered in the setting of preterm births.MethodsA qualitative study was performed using semi-structured individual interviews of 15 mothers with a child born > 26–34 GW. Data analysis was based on a constant comparative method.ResultsConcerning prenatal counseling content, parents wanted to be informed of their role in the care of their preterm child more so than statistics that were not always considered relevant. Parents’ reactions to the announcement of the risk of a preterm birth was dominated by stupefaction, uncertainty and anxiety. When it comes to the setting of prenatal counseling, patients’ room was deemed an appropriate setting by parents and ideally the presence of a coparent was appreciated as it increased patients’ understanding. The physicians’ attitude during the counseling was considered appropriate and described as empathic and optimistic. The importance of support throughout the hospitalization in the form of other parents’ experiences, healthcare professionals and the possibility to preemptively visit the NICU was emphasized by participants. Delivery experience was dominated by a sense of uncertainty, and urgency. Some leads for improvement included additional support of information such as virtual NICU visit; participants also insisted on continuity of care and the multidisciplinary aspect of counseling (obstetrician, neonatologist, midwife, nurse, lactation consultant and psychologist).ConclusionHighlighting parents’ expectations about prenatal counseling could lead to the establishment of overall general guidelines. However, some topics like the use of statistics and mentioning the risk of death underline the importance of a personalized information.

Caregiver and parent-child relationship during COVID-19: The mediator role of anxiety and life satisfaction.

This research was conducted to evaluate the mediation effect of anxiety and life satisfaction on the relationship between Care burden and Parent Child Relationship in Turkish parents during the COVID-19 epidemic. The research was carried out with parents (221 women and 219 men) who have children between the ages of 6-18 living in Turkey. Data were collected in June-July 2021 using the demographic data form, "Care Burden Scale," "Pervasive Anxiety Disorder-7 Test," "Satisfaction with Life Scale," and "Parent Child Relationship Scale." Path analysis was used to analyse the relationships. In this study, structural equation modelling (SEM) was used to examine the path analysis. It was found that the burden of care and anxiety of the parents and the parent-child conflict relationship were positively correlated and negatively correlated with the life satisfaction and parent-child closeness relationship (p < 0.05). Path model analyses revealed that the burden of care had a direct effect on anxiety and life satisfaction, and an indirect effect on the parent-child relationship, respectively. It shows that parents' perceptions of how the COVID-19 pandemic is affecting their mental health have implications for parent and child well-being, with stronger relationships for low-income families. Anxiety and life satisfaction had a mediating effect between care burden and parent-child relationship. Given the demonstrable impact of COVID-19 on the parent-child relationship, this study may guide the planning of coping strategies and programmes focused on mental health.

Parents’ Evaluation of Changes in Parents’ and Children’ Physical and Psychological Health Status in COVID-19 Pandemic

Introduction: People’s social activities were restricted by COVID-19 pandemic measures such as blocking access to cities, suspending schools. For normal psychological development and well-being of children, social interaction is an essential component. COVID-19 crisis has affected the psychological well-being of both parents and children through parental job loss, income loss, caregiving burden and terror of infection. &#x0D; Materials &amp; Methods: This research was done in the 2020-2021 academic year. Snowball sampling method is used, and 100 participants were reached during a 4-week time interval after ethical approval. Survey was created as an online form and its link was distributed via social media platforms. Survey composed of demographic questions and topic related questions about COVID-19 to both parents and children. Questionnaire was designed for parents to fill out. For data analysis, Chi-Square test was used.&#x0D; Results: The mean age of participants was 40.36 ± 6.463 and mean age of participants’ children was 11.69 ± 3.390. 93% of participants indicated that internet usage of their child increased during the pandemic. 91.9% of the parents stated that they have fears/concerns about the coronavirus becoming pandemic in the world. 52% of the parents stated that their child gained weight during the pandemic process. Significant association was found between the child's weight gain and the increase in the child's fears/worries (p= .006). A significant relationship was found between the presence of COVID-19 cases in or around the family and the increase in the fears/worries of the children (p= .024). &#x0D; Conclusion: According to parents’ perspective, 93% of participants’ child internet usage increased during pandemic. 73% of the parents reported that there has been an increase in the fears/ worries of children. On the other hand, 96% of the participants have stated that they have concerns of being negatively affected economically due to coronavirus pandemic. Significant relationship between fears/worries of parents’ and children was not found. In our study, there has been a significant relationship between fears/worries of children and their weight status. Parents of children who stated an increase in the worries of their child also stated that their children gained weight. Also, significant relationship was found between the presence of COVID-19 cases in or around the family and the increase in the fears/worries of the children.

The Effectiveness of Education for Children with Intellectual Disabilities on reducing the burden of parental care

&#x0D; &#x0D; &#x0D; Introduction: Although the pressure of care has an adverse effect on mental health of parents with children with intellectual disabilities, educational training for these children can be helpful by creating independence for these children. Accordingly, the present study is conducted by determining the effectiveness of educational training for children with intellectual disabilities on reducing the burden of care for their parents.&#x0D; Methods: The current research was conducted as a semi-experimental study with pre-test and post-test and a control group. The statistical population consisted of all the children under 14 withintellectual disabilities in Pakdasht city in 2021; 30 of them were selected through convenience sampling and randomly assigned to two experimental and control groups (15 people in each group). The experimental group underwent 20 training sessions, -two sessions a week for 5 hours, but the control group did not receive any training. Zarit Burden Interview was completed by their parents. Then, the obtained data was analyzed by SPSS 18 software and univariate covariance.&#x0D; Results: Data illustrated the significant difference of the parental burden mean scores between the experimental and control groups (F=107/535, P&lt;0/01); so, it can be concluded that educational training for children with educable intellectual disabilities significantly impacts caregiving-induced burden.&#x0D; Conclusion: Educational training for children with educable intellectual disabilities in centers related with welfare organization (private and governmental), can reduce the caregiving-induced burden and its possible devastating consequences.&#x0D; &#x0D; &#x0D;

Affiliate stigma and caregiver burden in parents of children with epilepsy

ObjectiveThis study aimed to investigate the current status of affiliated stigma and caregiver burden among parents of children with epilepsy, analyze their correlation, and identify factors influencing affiliated stigma. MethodsA cross-sectional survey was conducted among 194 parents of children with epilepsy who met the inclusion and exclusion criteria in Shenzhen City, Guangdong Province, China. Data were collected through questionnaires, including a demographic information sheet, an affiliated stigma scale, and a caregiver burden scale. ResultsThe results revealed that parents of children with epilepsy experienced a moderate level of affiliated stigma, with an average score of 54.92 ± 10.44. Similarly, caregiver burden scores fell within the moderate range, with an average score of 44.14 ± 16.02. Factors influencing affiliated stigma scores included the frequency of epileptic seizures in children, the types of anti-epileptic medications taken by children, and the place of residence. The total caregiver burden score and scores in various dimensions (emotional, cognitive, and behavioral) of caregivers for epilepsy patients were positively correlated with the affiliated stigma score. Affiliated stigma was found to independently explain 21.3 % of the variation in caregiver burden. ConclusionIn the future, healthcare professionals should develop targeted interventions for children with epilepsy and their parents to reduce affiliated stigma, decrease caregiver burden, and enhance the caregiving capabilities of parents of children with epilepsy. These measures are essential to improve the overall well-being of both parents and children affected by epilepsy.

Parental concerns about genital differences in children with congenital adrenal hyperplasia persist regardless of the selected intervention.

Congenital Adrenal Hyperplasia (CAH) due to 21-hydroxylase deficiency (21HD) can affect the in utero development of the genital anatomy of people with the 46XX karyotype. Health professionals engage parents in decision-making regarding managing genitals with this difference, including genital surgery options and patient communication. We sought to investigate parental communication with their daughters regarding clitoral size variation related to neonatal CAH. Semistructured in-person interviews of 24 parents of chromosomal XX children with clitoral size variation attributable to a neonatal CAH diagnosis comprised 3 management categories: (1) clitoral reduction surgery (RS) (7 parents, 9 children), (2) clitoral concealment surgery (CS) (8 parents, 8 children), and no surgery on or around the clitoris (NS) (9 parents, 7 children). Four representative themes, Obvious Choice, Still Different, Parental Burden, and Ignorance Is Bliss, were common across all 3 treatment groups. For most parents, none of the 3 options of genital appearance alteration via clitoral reduction, clitoral concealment surgery, or avoidance of clitoral surgery ameliorated concerns, with most parents expressing an aversion to educating their child on the topic of genital differences, past treatment, or future function. Reliance on surgical treatment pathways to manage this psychosocial concern is ineffective in alleviating parental uncertainty without the application of psychosocial interventions. This was a qualitative study but was limited to parents of children with a specific genital difference, without direct exploration of parental values regarding the clitoris or the application of adequate psychosocial care. Healthcare services must have an impact on parental ability to engage in essential communication with their children in cases such as clitoral size variation related to neonatal CAH. Improved communication skills allow parents to engage in more genuine decision-making and adapt to enduring genital reality, including possible future sexual challenges for their adult child, without resorting to burdensome strategies focused on attempts to perpetuate a benevolent ignorance.

Initial updosing phase of oral immunotherapy improves quality of life and psychological burden in parents of children with food allergy.

Background: Oral immunotherapy (OIT) can impose psychological burdens on patients and their parents due to the necessary preparations and repeated adverse reactions. Objective: To investigate changes in quality of life (QoL) and psychological burden in parents of children receiving OIT for food allergy (FA). Methods: Children aged 3-13 years with FA were enrolled. Parents were asked to fill out the Korean versions of the Food Allergy Quality of Life-Parental Burden (FAQL-PB), the Korean versions of the Food Allergy Quality of Life-Parental Form (K-FAQLQ-PF), the Korean versions of the Beck Anxiety Inventory (K-BAI), and the Korean version of the Patient Health Questionnaire-9 (PHQ-9) for depression before OIT (T1), after 2 months of updosing (T2), and after the end of the updosing phase (T3). Results: A total of 111 parents were enrolled. The total FAQL-PB scores were decreased at T2 and T3 compared with those at T1 (all p < 0.001). Greater improvement in the total FAQL-PB score at T2 was noted in parents with a higher parental burden (FAQL-PB score ≥ 74 points) at baseline than in those with a lower parental burden (p = 0.001). Among the K-FAQLQ-PF domains, "food anxiety" scores were decreased at T2 and T3 compared with those at T1 (p = 0.049 and p = 0.030, respectively), whereas there was no change in "social and dietary limitation" and "emotional impact" scores between T1 and T2 and between T1 and T3. However, no differences were observed in K-BAI and PHQ-9 scores between T1 and T2 and between T1 and T3. Conclusion: Our results suggest that OIT improves parental burden and QoL in parents of children with FA.

Caregiver burden among parents of children with type 1 diabetes: A qualitative scoping review

ObjectivesType one diabetes (T1D) in children places substantial responsibility on parents as caregivers. This study investigated caregiver burden in parents of children with T1D by exploring the financial, physical, social, spiritual, and emotional or psychological problems they experienced. MethodsWe conducted a qualitative scoping review of the databases PsycINFO, PROSPERO, OVID Medline, OVID EMBASE, Cochrane Library (CDSR and Central), EBSCO CINAHL, ProQuest Dissertations and Theses Global, and SCOPUS. Of 119 full text articles assessed for eligibility, 18 peer-reviewed qualitative studies were included. Studies were considered relevant if they focused on diabetes management and parental burden or the experience of caregiving for a child with T1D. ResultsUsing thematic analysis, six interrelated themes were identified: (a) experiencing chronic sorrow, (b) assuming responsibility for glucose highs and lows, (c) managing T1D and nighttime sleep disturbances, (d) making career sacrifices and choices to optimize T1D care, (e) navigating social experiences postdiagnosis, and (f) discovering new sources of support through online platforms. ConclusionsThis synthesis highlights an all-encompassing experience involved in caretaking for a child with T1D. Caregiving duties lead to a constant sense of vigilance, especially due to fear of hypoglycemic incidents. Parents commonly experience challenges with balancing work demands with T1D management, which lead to career and financial sacrifices. Their burden of care is exacerbated by a lack of reliable respite care but helped somewhat by online peer support. Future research is needed on the care burden differences between mothers and fathers and how sociodemographic factors affect how caregiver burden is experienced.

A Pilot Study Comparing the Efficacy, Fidelity, Acceptability, and Feasibility of Telehealth and Face-to-Face Creative Movement Interventions in Children with Autism Spectrum Disorder.

We compared the efficacy, fidelity, acceptability, and feasibility of a creative movement (CM) intervention for children with autism spectrum disorder (ASD), delivered face-to-face (F2F) or through telehealth (TH). Fifteen children with ASD received the CM intervention F2F or through TH. Motor assessments were used to evaluate effects of F2F and TH interventions on children's motor skills, while video coding was used to assess affect, socially directed verbalization, interpersonal synchrony, and motor coordination during training. Stakeholder feedback and training fidelity data on the intervention were also collected. Children in both subgroups showed similar baseline performance and training-related improvements in motor skills, positive/interested affect, socially directed verbalization, interpersonal synchrony, and dual/multilimb coordination. Parents in the TH subgroup considered the intervention feasible and acceptable; however, they reported greater effort to supervise and redirect their child's attention compared to the F2F subgroup. Trainers for the TH subgroup reported more communication difficulties, technological issues, and longer session lengths, but found greater parental involvement compared to the F2F subgroup. CM interventions are consistent, acceptable, feasible, and effective in improving social, behavioral-affective, and motor skills of children with ASD, regardless of the method of delivery. Clinicians should make efforts to reduce communication/technological issues and parental burden when delivering CM interventions through TH. ClinicalTrials.Gov Study ID-NCT04258254.

유보통합 정책 추진 현황에 대한 부모의 인식 연구: 우선 이행과제와 실천방안 중심으로

This study aims to analyze parents' perceptions of the priority tasks and action plans of the government's kindergarten integration policy, which is being promoted to prevent gaps in education and care from the infant and toddler period, the starting point of life. The results of an analysis of a total of 256 parents with children aged 0 to 5 are as follows. First, as a result of analyzing parents' awareness of the current status of the kindergarten integration policy implementation, overall awareness of the government's priority implementation tasks and action plans for kindergarten integration was found to be at a high level. In particular, the detailed implementation tasks include 'Providing integrated information on the status of kindergartens and daycare centers', 'Supporting improvement of indoor and outdoor safety, health, and hygienic environments and expanding safety education', and 'Using information on additional recruits to kindergartens and daycare centers, improving the convenience of applying for admission and admission'. Awareness was at the highest level. Second, as a result of analyzing the differences in parents' perception of the current status of childcare integration policy implementation according to background variables, the area of “Support for the healthy development of infants and young children” showed differences by parent age, education level, type of work hours at work, child age, and financial institution group. It was found that the area of 「Alleviating parental cost burden and support for raising children」 showed differences by parent age, type of work hours, child age, and financial institution group, and the area of 「Improvement of user convenience and strengthening of cooperation base」 showed differences by group. It was found that there were differences by parent age, child age, and funding institution group. Based on these results, it is recommended that, firstly, additional policy supplementation without discrimination in the area of 'healthy development support' is necessary for the group of parents whose children are attending kindergarten, and secondly, legal content that ensures a stable budget base needs to be included as well. Third, it suggests that systems and institutional improvements to improve the convenience of consumers using services should be continuously developed.

Long-term burden of informal caregiver 7-years after severe childhood traumatic brain injury in the traumatisme grave de l’Enfant (TGE) study

ABSTRACT Objective To investigate reported burden by the Primary Family Caregiver (PFC) 7-years after severe pediatric traumatic brain injury in the TGE (Traumatisme Grave de l’Enfant) longitudinal study. Methods Subjective burden was estimated with the Zarit Burden Inventory (ZBI) in 36 PFC (parents), who rated their own health status (Medical Outcome Study Short Form-12), family functioning and their child’s level of care and needs (Pediatric/Adult Care And Needs Scale [PCANS/CANS]). Data collection included: child and PFC sociodemographic characteristics, injury-related factors, ‘objective’ (e.g. overall level of disability: Glasgow Outcome Scale – Extended, GOS-E/GOS-E-Peds) and ‘subjective’ outcomes (e.g. participation, behavior, executive functions, quality of life and fatigue). Results 25% of PFC reported mild-moderate burden, and 19% moderate-severe burden. Higher burden correlated with worse outcomes in all ‘subjective’ PFC-rated outcomes, and with self-reported participation. The ZBI correlated strongly with CANS/PCANS and GOS-E/GOS-E-Peds. Overall level of disability and PFC-reported executive functioning explained 62% of the ZBI variance. For equal levels of disability, burden was higher when PFC reported a ‘negative’ picture of their child. Conclusion Significant PFC-reported burden 7-years post-injury was associated with overall disability and ‘subjective’ PFC-rated outcomes. Factors influencing parental burden in the long term should be identified and psychological support implemented over time.