Pediatric Inventory For Parents Research Articles

Exploring Stress and Coping in Caregivers of Children with Pulmonary Vein Stenosis: A Mixed-Method Study.

(1) Background: This mixed-method study aims to identify and describe factors associated with acute and long-term parenting stressors and coping strategies in caregivers of children with intraluminal pulmonary vein stenosis (PVS). (2) Methods: Parents of children with severe PVS were recruited from a large quaternary hospital to complete a survey that included demographics, the Pediatric Inventory for Parents (PIP), and the Coping Health Inventory for Parents (CHIP). We determined the Social Vulnerability Index (SVI) based on self-reported home address. A subset of caregivers completed a 60 min semi-structured interview via Zoom exploring the impact their child's diagnosis had on their family; experience managing stress in the hospital and at home; current resources and processes for coping; and potential recommendations for hospitals to build resilience and coping. We used multivariable linear regression to examine the association between SVI and parental stress and coping while adjusting for possible confounders. Thematic analysis identified themes related to stress and coping. Finally, we assessed instances of convergence and difference between the qualitative and quantitative results. (3) Results: Participants included 32 caregivers who were 91% female with a mean age of 39 years. The children of participants were 66% female, with a mean age of five years. The parents reported a high amount of stress with an average PIP score of 120, nearly 46 points higher than similar studies in the congenital heart community. We observed no significant associations between SVI and either parental stress or coping in adjusted models. We identified 13 themes, including medical care, hospital, family, support systems, and home medical routine or support. (4) Conclusions: Our study found high levels of illness-related parental stress among caregivers of children with PVS. Stress evolved over time from what caregivers described as 'survival mode' to a future-oriented outlook. Currently, caregivers rely heavily on support networks that are not available to all caregivers or may experience strain over time. Caregivers indicated that communication and parental role functioning were coping strategies that could be better supported by providers and health systems.

The Relationships between Family Resources, Parental Stress, and Child Well-Being in Pediatric Sickle Cell Disease

Introduction: Parents and caregivers play an important role in the management of pediatric chronic illness. In sickle cell disease (SCD), families often manage multiple components simultaneously, such as attending clinic appointments, following a medication regimen, and treating pain symptoms. The availability of resources is known to affect disease management. However, it is unknown how children and parents view their resource availability, and how this can impact both parent stress and child quality of life (QoL). The current study examined the ways in which family resources, parental stress, and child well-being interact with and potentially influence each other. We hypothesize the following: 1) There is a relationship between family resources and child well-being such that more family resources leads to higher quality of life reporting; 2) There is a relationship between family resources and parental stress such that more family resources leads to lower parental stress; and 3) Parental stress moderates the relationship between family resources and child well-being. Methods : Parents of youth with SCD reported on the adequacy of their family's resources by completing the 30-item Family Resource Scale (FRS), rating items on a 5-point Likert scale (1 = not adequate at all to 5 = almost always adequate). Parents also reported on their parental stress by completing the 42-item Pediatric Inventory for Parents (PIP), rating items on a 5-point Likert scale (1 = never/not at all to 5 = very often/extremely). Children and parents reported on the child's overall well-being by completing the 43-item PedsQL SCD Module self-report form and 43-item parent proxy-report, rating items on a 5-point Likert scale (0 = never to 5 = almost always). Pearson's correlation coefficients were calculated to measure relationships between family resources (FRS) and child well-being (PedsQL), family resources (FRS) and parental stress (PIP), and parental stress (PIP) and child well-being (PedsQL). Multiple regressions were used to determine if parental stress moderated, or changed the effect of, family resources on child well-being. Results: Seventy-eight primary caregivers of youth aged 7-16 with SCD (Mean age = 10.37, SD = 2.86; 58% female; 68% HbSS; 87% African American or Black; 90% Not Hispanic) completed measures on their family resources and parental stress. Preliminary correlation analyses show the relationship between family resources and child self-reports on QoL was weak, positive, and not significant (r = 0.18, p = .167). The relationship between family resources and parent proxy-reports on QoL, however, was moderate, positive, and significant (r = .36, p = .001). The correlation between family resources and parental stress was moderate, negative, and significant (r = -.42, p < .001). The correlation between parental stress and child QoL self-reports was weak, negative, and significant (r = -.225, p = .05). The correlation between parental stress and parent proxy-reports on child QoL was moderate, negative, and significant (r= -.50, p = <.001). Multiple regression results for parent proxy-reports on child QoL show parental stress significantly and negatively impacts parent proxy-reports on child QoL (b = -5.52, p = .034). The relationship between family resources and parent proxy-reports on child QoL was not moderated by parental stress (b = 2.44, p = .207). Conclusion: There is a relationship between family resources and child well-being such that more resources reflect higher quality of life, but only when the parents are reporting on their child's well-being. Current results also show that as family resources decrease, parental stress moderately increases. Parental stress significantly impacted both self-reports and parent proxy-reports on child quality of life, though there was a weaker relationship shown in child self-reports. It's likely that parents who are more stressed view their child as being more stressed. Future interventions should consider including parent components to 1) further understand the role of parental stress as it relates to pediatric SCD management and 2) identify ways to best support families experiencing resource inadequacy or high levels of parental stress. Developing screeners to give to parents of youth with SCD during clinic appointments could offer a destigmatized way of connecting families to resources and providing tools for parental stress management.

Effect of the virtual training program for managing fever and seizures on the stress of mothers of children with febrile seizures

Background and aims: This study investigates the effect of virtual training on the stress of mothers of children with febrile seizures. Methods: This quasi-experimental research was conducted on 64 mothers of children with febrile seizures in Shahrekord in 2022. The samples were randomly distributed into intervention and control groups. The intervention group received WhatsApp training during three individual and 3 group sessions, and the control group received routine training. Mothers' stress was measured using the Pediatric Inventory for Parents (PIP) questionnaire, completed by two groups before, immediately, and two months after the intervention. Data analysis was done using the SPSS 18 version, descriptive statistics, repeated measure analysis of variance, independent t-test, chi-square, and Fisher tests. Results: Before the intervention, the average total score of stress in frequency level in intervention and control groups was 117.29±20/70 and 122.50±24.69 and in difficulty level in intervention and control groups were 122.21±25.32 and 129.83±3.24. There was no statistically significant difference on the two levels between the groups (P=0.363) and (P=0.285). Immediately after the intervention, the average total score on the two levels in the intervention group was significantly lower than the control group (P=0.001) and (P=0.003). Two months after the intervention, the average score on two levels in the intervention group was lower than the control group (P<0.001). Conclusion: Using virtual training is suggested as an effective method to reduce the stress of mothers of children with febrile seizures.

Illness-related parental stress and quality of life in children with kidney diseases.

This cross-sectional study investigated quality of life (QoL) and illness-related parental stress in children with kidney diseases by (1) comparing mean levels of these two variables between several kidney disease categories; (2) exploring correlations between QoL and parental stress; and (3) describing which disease category reports lowest QoL and highest parental stress. We included 295 patients with a kidney disease (0-18years) and their parents, followed at 6 reference centers for pediatric nephrology. Children's QoL was assessed by the PedsQL™ 4.0 Generic Core Scales, and illness-related stress by the Pediatric Inventory for Parents. All patients were divided into 5 kidney disease categories according to the multidisciplinary care program criteria prescribed by the Belgian authorities: (1) structural kidney diseases, (2) tubulopathies and metabolic diseases, (3) nephrotic syndrome, (4) acquired diseases with proteinuria and hypertension, and (5) kidney transplantation. Child self-reports showed no differences in QoL between kidney disease categories, in contrast to parent proxy reports. Parents of transplant patients reported lower QoL in their child and more parental stress compared with the 4 non-transplant categories. QoL and parental stress were negatively correlated. Lowest QoL and highest parental stress scores were mainly found in transplant patients. This study showed lower QoL and higher parental stress in pediatric transplant patients compared with non-transplants, based on parent reports. Higher parental stress is associated with worse QoL in the child. These results highlight the importance of multidisciplinary care for children with kidney diseases, with special attention to transplant patients and their parents. A higher resolution version of the Graphical abstract is available as Supplementary information.

Evaluating caregiver stress in craniosynostosis patients.

Caregiver stress from a child's diagnosis can impact a caregiver's ability to participate in treatment decisions, comply, and manage long-term illness. The aim of this study was to compare caregiver stress in children with craniosynostosis at diagnosis and postoperatively. This prospective study included caregivers of pediatric patients with craniosynostosis receiving operative intervention. Demographics and Parenting Stress Index, Short Form (PSI-SF) and Pediatric Inventory for Parents (PIP) surveys at baseline (preoperatively) and 3 and 6 months postoperatively were completed. PSI-SF scores between 15 and 80 are considered normal, with > 85 being clinically significant and requiring follow-up. Higher PIP scores represent increased frequency and difficulty of stressful events due to the child's illness. Pairwise comparisons were performed using the Wilcoxon signed-rank test. Multivariate analysis was performed to assess for PSI-SF and PIP predictors. Of 106 caregivers (84% Caucasian), there were 62 mothers and 40 fathers. There were 68 and 45 responses at 3 and 6 months postoperatively, respectively. Regarding the baseline group, more than 80% were between 20 and 40 years of age and 58% had less than 2 years of college education. The median household income fell in the $45,001-$60,000 bracket. There was no significant difference between median baseline PSI-SF score (65, IQR 51-80) and those at 3 months (p = 0.45) and 6 months (p = 0.82) postoperatively. Both median PIP frequency (89 vs 74, p < 0.01) and difficulty (79 vs 71, p < 0.01) scores were lower at 3 months, although no significant difference was observed at 6 months (frequency: 95 vs 91, p = 0.67; difficulty: 82 vs 80, p = 0.34). Female sex, uninsured status, and open surgery type were all risk factors for higher parental stress. Stress levels ranged from normal to clinically significant in the caregivers, with sex, uninsured status, and open repair predicting higher stress. Stress decreased at 3 months postoperatively before increasing at 6 months. Intervention targeting caregiver stress should be explored to maintain lower stress observed at 3 months after surgery.

Parenting Stress over the First Year of Inflammatory Bowel Disease Diagnosis.

A diagnosis of inflammatory bowel disease (IBD) in children can disrupt the family, including altered routines and increased medical responsibilities. This may increase parenting stress; however, little is known about parenting stress changes over the first year following an IBD diagnosis, including what demographic, disease, or psychosocial factors may be associated with parenting stress over time. Fifty-three caregivers of children newly diagnosed with IBD (Mage = 14.17 years; Mdays since diagnosis = 26.15) completed parenting stress (Pediatric Inventory for Parents), child anxiety (Screen for Child Anxiety-Related Disorders), and child health-related quality of life (HRQOL; IMPACT) measures within 1 month of diagnosis and 6-month and 1-year follow-ups. Multilevel longitudinal models assessed change and predictors of parenting stress. Parenting stress was significantly associated with greater child anxiety and lower HRQOL at diagnosis (rs = 0.27 to -0.53). Caregivers of color and caregivers of female youth reported higher parenting stress at diagnosis (ts = 2.02-3.01). Significant variability and declines in parenting stress were observed across time (ts = -2.28 and -3.50). In final models, caregiver race/ethnicity and child HRQOL were significantly related to parenting stress over the first year of diagnosis (ts = -2.98 and -5.97). Caregivers' parenting stress decreases across 1 year of diagnosis. However, caregivers of color and those rating their child's HRQOL as lower may be at risk for greater parenting stress. More research is needed to understand why caregivers of color reported greater parenting stress compared to White caregivers. Results highlight the importance of providing whole-family care when a child is diagnosed with IBD.

Parenting a child with a chronic illness during a pandemic

BackgroundNearly 20% of children in the United States experience one or more chronic health conditions. Parents of a child with a special healthcare need (CSHCN) experience increased stress caring for a child with chronic illness. PurposeThe purpose of this descriptive study is to describe stress in parents of a child with chronic illness during the COVID-19 pandemic. MethodsParents of CSHCN (n = 34) were asked to fill out the Pediatric Inventory for Parents (PIP) and answer two questions related to caring for their child during the COVID-19 pandemic. ConclusionsThe means of the PIP-F (M = 146.6, SD = 20.5) and PIP-D (M = 141.9, SD = 23.9) were significantly higher than in previous studies. There is statistically significant positive correlation between parent stress and variables of age of the child and the length of time since diagnosis. In response to the questions about the impact of COVID, nearly all parents reported COVID increased their stress and reported their stress was related to isolation, lack of resources, and concern for the mental health of other children in the household. Practice implicationsCOVID-19 likely exacerbated feelings of stress for parents of children with chronic health conditions. Although unprecedented, COVID-19 shed light on the existing fragility and high stress of parents of CSHCN. Pediatric nurses not only care for children, but must be advocates for the mental health of their patient's parents.

The Effects of a Web-Based Tool for Parents of Children With Juvenile Idiopathic Arthritis: Randomized Controlled Trial.

BackgroundJuvenile idiopathic arthritis (JIA) is a group of autoinflammatory diseases that cause pain and disability if not controlled by treatment. Parenting a child with JIA is stressful for parents, who express concerns about their child’s treatment and may experience anxiety and powerlessness concerning their child’s illness. Parenting stress is greater in parents of children with chronic illness than in those with healthy children and is related to poorer psychological adjustment in both parents and children. It is therefore important to develop interventions to support parents. This paper reports the evaluation of a web-based tool that provides information and practical skills to help increase parents’ confidence in managing their child’s illness and reduce parenting stress.ObjectiveThe aim of this study is to evaluate the benefits of a web-based tool (WebParC) for parents of children with recently diagnosed JIA.MethodsA multicentered randomized controlled trial was conducted at pediatric rheumatology centers in England. We recruited parents of children aged ≤12 years who had been diagnosed with JIA within the previous 6 months. They were randomized to the intervention (WebParC access plus standard care) or the control (standard care alone) and followed up 4 months and 12 months after randomization. Where both parents participated, they were randomized by household to the same trial arm. The WebParC intervention consists of information about JIA and its treatment plus a toolkit, based on cognitive behavioral therapy, to help parents develop skills to manage JIA-related issues. The primary outcome was the self-report Pediatric Inventory for Parents measure of illness-related parenting stress. The secondary outcomes were parental mood, self-efficacy, coping, effectiveness of participation in their child’s health care, satisfaction with health care, and child’s health-related quality of life.ResultsA total of 203 households comprising 220 parents were randomized to the intervention (100/203, 49.3%) or control (103/203, 50.7%) arm. Follow-up assessments were completed by 65.5% (133/203) of the households at 4 months (intervention 60/100, 60%, and control 73/103, 70.9%) and 61.1% (124/203) of the households at 12 months (intervention 58/100, 58%, and control 66/103, 64.1%). A main effect of the trial arm was found on the Pediatric Inventory for Parents: the intervention participants reported less frequency (subscales communication F1,120627=5.37; P=.02, and role function F1,27203=5.40; P=.02) and difficulty (subscales communication F1,2237=7.43; P=.006, medical care F1,2907=4.04; P=.04, and role function F1,821=4.37, P=.04) regarding illness-related stressful events than the control participants.ConclusionsThe WebParC website for parents of children with JIA reduced illness-related parenting stress. This web-based intervention offers a feasible preventive approach for parents of children with JIA and potentially could be adapted and evaluated for parents of children with other chronic illnesses.Trial RegistrationInternational Standard Randomized Controlled Trial Number (ISRCTN) 13159730; http://www.isrctn.com/ISRCTN13159730

527-P: Pediatric Parenting Stress, Child Behavior, and COVID-19-Specific Parent Functioning among Parents of Youth with Type 1 Diabetes (T1D)

Introduction: Parents of children with T1D experience substantial caregiving distress, and child behavior problems are common among children with T1D. Stressors associated with the COVID-19 pandemic may disrupt T1D management and/or parent psychological functioning. This study examined the associations among pediatric parenting stress, child behavior, and diabetes- and COVID-19-specific psychosocial experiences among parents of children with T1D during the initial months of the COVID-19 pandemic. Methods: Participants were 100 parents of young children with T1D (M age=6.7±1.6; M T1D duration=2.9±.5 years), who had completed participation in a multi-site behavioral intervention trial. In June/July 2020 (≥6 months after trial completion), parents self-reported on demographics, pediatric parenting stress (Pediatric Inventory for Parents; PIP), child behavior (Eyberg Child Behavior Inventory; ECBI), and a newly developed questionnaire measuring negative/positive impact of COVID-19 on T1D management and parent mood related to COVID-19. Results: During the COVID-19 pandemic, there were significantly lower ECBI scores for married versus non-married participants (t=2.53, p&amp;lt;.05). PIP was positively correlated with ECBI (r=.35, p&amp;lt;.01) and negative COVID-related T1D management (r=.42, p&amp;lt;.01), but negative COVID-related T1D management was not associated with ECBI. Worse COVID-19-specific parent mood was associated with PIP (r=.63, p&amp;lt;.01) and ECBI (r=.28, p&amp;lt;.01). Positive COVID-related T1D management was unrelated to PIP or ECBI. Conclusion: Given the increased demands of managing home, school, work and adhering to social distancing measures while managing a chronic illness, parents of children with T1D are particularly vulnerable during the COVID-19 pandemic. Clinically, findings highlight the importance of assessing parent psychosocial functioning, child behavior, and challenges to children’s T1D management. Disclosure K. Rooney: None. C. H. Wang: None. M. E. Hilliard: None. R. Streisand: None. C. Danko: None.

Coping self-efficacy and parenting stress in mothers of children with congenital heart disease

BackgroundMothers of children with congenital heart disease (CHD) experience high parenting stress that affects both mothers and children. ObjectivesThe purpose was to examine the relationship between coping self-efficacy and parenting stress in mothers of children with CHD and to identify the factors related to parenting stress. MethodsData were collected using a self-reporting questionnaire from 100 mothers whose children, aged 0 to 12, had been diagnosed with CHD. The Coping Self-Efficacy scale was used to measure coping self-efficacy, and Pediatric Inventory for Parents was used to measure the parenting stress. Multiple linear regression analysis was conducted to investigate the factors related to parenting stress. ResultsHigher parenting stress was related to lower coping self-efficacy to obtain social support and having any other children. ConclusionInterventions that consider factors related to parenting stress and to enhance coping self-efficacy is required. Effective practice could be delivered by paying more attention to mothers with less supporters and those who have other dependent children.

Factors associated with stress when caring for a child with a short stature

Short stature (SS) is one of the main diagnoses in Pediatric Endocrinology. SS can have a negative impact on family dynamics, causing stress and psychopathology. Poor adaptation by the family caregiver negatively affects the pediatric patient. Our objective was therefore to study the adjustment of the main family caregivers of pediatric patients with SS, analyzing the factors influencing it. One hundred and ten primary family caregivers of pediatric SS patients from hospitals in Valencia, Spain, participated. Parental stress (Pediatric Inventory for Parents), anxious and depressive symptoms (Hospital Anxiety and Depression Scale), family functioning (Family Cohesion and Adaptation Scale), and adult attachment (Adult Attachment Questionnaire) were evaluated. Fuzzy set qualitative comparative analysis (fsQCA) was performed. The caregiver’s age, anxiety, and attachment variables are significant when predicting the main family caregiver’s adaptation to the stress caused by the diagnosis. These results will help improve adaptation to the diagnosis, since healthcare personnel will be able to establish that caregivers and/or families present a greater risk of mismatch more quickly and apply the necessary intervention.

Translational cultural adaptation and psychometric study of the Persian version of pediatric inventory for parents.

BACKGROUND:Cancer, as a life-threatening disease in children, poses several challenges for parents. It is necessary to have a tool that can comprehensively examine the stressful events for parents of children with cancer. The aim this present study was done with the aim of study the Persian version of pediatric inventory for parents (PIP).MATERIALS AND METHODS:The study was a conducted based on methodological research design. Four hundred and fifteen parents of children with cancer referring to Alia Asghar Children's Hospital and Children's Medical Centre in Tehran answered the Persian version of PIP questionnaire in 2019. a confirmatory factor analysis was carried out using LISREL (software version 8.8) to test the construct validity of PIP. The two tools of parental stress scale and state-trait anxiety inventory (STAI-Y) were used for concurrent validity purposes.RESULTS:The results showed that, the overall score of the questionnaire was higher than the average and related to emotional distress. The internal correlation coefficient (Cronbach's alpha) in both parts of the PIP was between 0.808 and 0.957 and acceptable. Concurrent validity analysis indicated positive and significant correlation of this tool in the difficulty section of the scale with both Parental Stress Scale and STAI-Y. The results of confirmatory factor analysis indicated that the factor loads of all items except three items in the frequency section were more than 0.3 and were appropriate.CONCLUSION:The Persian version of PIP can be available to health and family experts as a valid and reliable tool to assess stressful events of parents of children with cancer.

Online assessment of problem-solving skills among fathers of young and school-age children with type 1 diabetes: Associations with parent and child outcomes.

Type 1 diabetes (T1D) is a pediatric chronic illness that is associated with significant parenting stress due to its lifelong course, burdensome disease management, and life-threatening complications. Although mothers of children with T1D have been studied extensively in relation to parenting stress, coping, and diabetes outcomes, there is a need to examine similar variables among fathers. The aim of the present study was to examine if fathers' use of problem-solving skills was related to parenting stress and diabetes regimen adherence and if problem-solving skills moderated the associations between paternal involvement in diabetes care and parenting stress in a national online sample of 215 fathers of children with T1D. Self-report measures completed by fathers through Qualtrics included a demographic and disease-related questionnaire, the Social Problem-Solving Inventory-Revised; Parenting Stress Index-Fourth Edition, Short Form; Pediatric Inventory for Parents; Dads' Active Disease Support Scale; and Self-Care Inventory-Revised. Pearson correlations were computed to assess associations among study variables. Four separate multiple linear regression analyses were conducted to determine the interactive effects of problem-solving skills and paternal involvement on parenting stress. Analyses revealed a large positive correlation between problem-solving skills and general parenting stress (r = .63), and a large negative correlation between problem-solving skills and pediatric parenting stress (r = -.52). The interaction between problem-solving skills and father involvement accounted for a significant amount of variance in a general parenting stress subscale (p < .01) and pediatric parenting stress (p < .05). These results highlight the importance of problem-solving skills for father outcomes in the context of T1D while implicating the potential benefit of a problem-solving intervention for this population.

The Pediatric Inventory for Parents: Development of a short-form in fathers of children with type 1 diabetes (T1D).

The Pediatric Inventory for Parents (PIP) is a 42-item measure of paediatric parenting stress that results in 84 responses. Although this measure has been extensively validated, the number of items in the instrument may hinder clinical applicability. The current study reports on the development of a short-form of the PIP using data from 344 fathers of children with type 1 diabetes. Recommendations for short-form development as well as item response theory (IRT) were used to construct a 13-item PIP Short-Form that results in 26 responses. The retained items were chosen to reflect the content domains of the original form of the PIP and demonstrated acceptable item fit under the partial credit model (PCM; Infit and Outfit indices closest to one and items with thresholds across the span of the latent trait). The PIP Short-Form may allow health care professionals to more feasibly assess paediatric parenting stress among parents of children with chronic health conditions. Future studies are needed to validate this new short-form.

Readiness for Hospital Discharge, Stress, and Coping in Mothers of Children Undergoing Cardiac Surgeries: A Single-Center Prospective Study.

To examine the relationship between stress, coping, and discharge readiness in mothers of children undergoing congenital heart surgeries. Quantitative descriptive study at three time points: pre surgery (time point I), day of hospital discharge (time point II) and 2 weeks following discharge (time point III). Tertiary care pediatric hospital in Singapore. One hundred mothers whose children had undergone congenital heart surgeries. Data collection included self-reported questionnaires of the Pediatric Inventory for Parents and the Coping Health Inventory for Parents across three time points. Readiness for Hospital Discharge Scale was administered at hospital discharge (time point II). The utilization of health services and support was reported at post discharge (time point III). One-hundred mothers participated in this study between May 2016 and July 2017. Their mean age was 35.8 years (SD = 7.0), and the mean age of their children was 3.7 years (SD = 4.6). There was significant reduction in mean stress difficulty (Pediatric Inventory for Parents) of mothers (F = 4.58; p = 0.013) from time point I to III. No significant changes were found in the overall mean coping score (Coping Health Inventory for Parents) of mothers across time. The mean overall score for the readiness for discharge (Readiness for Hospital Discharge Scale) of mothers at hospital discharge was 207.34 (SD = 29.22). Coping through family integration subscale and communication stress predicted discharge readiness of mothers (adjusted R = 0.11; p = 0.034). Mothers who reported higher overall stress (Pediatric Inventory for Parents) 2 weeks post discharge were more likely to call a friend or family member, visit the emergency department, or have their child readmitted to hospital following hospital discharge. We identified coping by family integration and communication-related stress as predictors of readiness for discharge. Strategies targeted at communication and family integration for discharge preparation may improve caregivers' readiness for hospital discharge.

Parental levels of stress managing a child diagnosed with type 1 diabetes in Riyadh: a cross sectional study

BackgroundCaring for a child with Type 1 Diabetes (T1D) pose a significant burden on parents especially when they struggle with their child’s T1D management. The experience of not coping or struggling to cope increases the level of stress in parents, which may adversely affect their child’s diabetic control (Al Dubayee et al, Horm Res Paediatr 88:2019). In this study, we assessed the level of stress parents experience in caring for a child diagnosed with T1D in four different domains.MethodsThis was a cross-sectional study conducted in two specialized diabetic centers in Riyadh, Saudi Arabia, from February to May 2015 (Al Dubayee et al, Horm Res Paediatr 88:2019). We used an Arabic translation of the validated Pediatric Inventory for Parents (PIP) questionnaire. The frequency and perceived difficulty of stressful events were rated by interviewing parents caring for children with T1D using two 5-point Likert scales.ResultsThe sample realized as 390 parents. The level of stress increased in separated and unemployed parents. The frequency (mean 64.9/210, SD 7.529) and difficulty (mean 65.3/210, SD 9.448) indices of the parental level of stress were compared with variables possibly associated with stress. Both of the frequency difficulty indices correlated with the marital status, the father’s level of education and occupation as well as HbA1c level (P-value < 0.05). In addition, the frequency index correlated with the frequency of hypoglycemia and the difficulty index correlated with the number of children in the family (P-value < 0.05).ConclusionParents of children with T1D in Riyadh experience a significant level of stress that may affect the child’s glycemic control (Al Dubayee et al, Horm Res Paediatr 88:2019). Assessing the level of stress and providing support for these families has the potential to improve the clinical outcome.

Increased parental anxiety and a benign clinical course: Infants identified with short-chain acyl-CoA dehydrogenase deficiency and isobutyryl-CoA dehydrogenase deficiency through newborn screening in Georgia

The long-term consequences and need for therapy in children with short-chain acyl-CoA dehydrogenase deficiency (SCADD) or isobutyryl-CoA dehydrogenase deficiency (IBDD) identified via newborn screening (NBS) remains controversial. Initial clinical descriptions were severe; however, while most cases identified through NBS have remained asymptomatic, clinical concerns have been raised in these populations. It is not clear whether these children are asymptomatic because of the success of NBS, or because the normal clinical course of these disorders is relatively benign. To evaluate these possibilities in our program, we evaluated the clinical outcomes of children with SCADD or IBDD identified by the Georgia NBS compared to the health status of a healthy age-matched control group. We also assessed parental anxiety during a phone interview both subjectively and objectively using the Pediatric Inventory for Parents (PIP), a validated measure of illness-related parental stress. The general health of 52 SCADD and nine IBDD cases from 2007 to 2016 were compared to the general health of unaffected control children obtained through the Centers for Disease Control and Prevention (CDC) parent listserv. We also collected statements from parents who participated in a phone survey regarding events they experienced during and after their diagnostic process. Overall, the children with SCADD and IBDD had no major health problems. There was no significant difference in cognitive development (p = .207). We identified a slightly higher incidence of reported neonatal hypoglycemia in the SCADD group; two of these occurred in the context of maternal diabetes. All interviewed parents reported extreme anxiety during the diagnostic period and current feelings of uncertainty about their child's future. PIP scores for all six caregivers who responded to that portion of the survey were consistent with some degree of parental stress. The greatest reported stressor was the unknown long-term impact of the illness. All children with SCADD and IBDD had no significant long-term sequelae. The phone interviews revealed substantial parental anxiety about the identification and follow-up of SCADD and IBDD. Based on our findings, the anxiety parents experience may be unwarranted given that we see no disease-associated morbidity or mortality in these children. Consideration should be given to the removal of these conditions from NBS panels, or if that is not possible, clinicians could educate parents on the benign nature of these diagnoses and release them from follow-up without treatment.

S5A-01 SESSION 5A: GENERALITIES IN CRANIOSYNOSTOSIS – PART II EVALUATING STRESS IN CAREGIVERS OF CHILDREN WITH CRANIOSYNOSTOSIS

Introduction: Caregiver stress brought on by a child’s diagnosis impacts a caregiver’s ability to participate in treatment decisions, comply and manage an illness long-term. In this study, we aim to identify baseline stress levels in caregivers of children with craniosynostosis at time of diagnosis and treatment planning. Methods: This prospective study includes caregivers of pediatric patients under the age of 18 treated for craniosynostosis at our institution. Once surgical intervention was confirmed, caregivers were approached for consent and enrollment. Demographic, along with baseline Parenting Stress Index (PSI) and Pediatric Inventory for Parents (PIP) surveys were completed. PSI scoring is as follows: percentile scores between 15 and 80 are considered typical, while high stress scores range from 81 to 84. Clinically significant stress levels requiring follow-up are above 85. Larger PIP scores represent increased frequency and difficulty of stressful events due to the child’s illness. Results: Fifty-seven caregivers (93% Caucasian) of 36 patients represented 30 mothers, 22 fathers, and 5 other (legal guardian, grandparent, etc.). Over 85% were between 20–40 years old with 52% having less than 2 years of college. Median household income ranged from $45-60,000. Sixty-five percent were caregivers of open procedure patients. The median baseline PSI percentile for our cohort was 33% (IQRS 19–64). Over 43% of caregivers felt they gave up more of their life than expected. Twenty percent of caregivers felt their child’s illness impacted partner and friend relationships. Eighteen percent felt they could not handle things very well; 12% felt trapped by responsibilities. However, 76% felt they were good parents, and 70% felt they were still able to enjoy life. Females exhibited higher frequency of stressful events (PIP frequency score: 104.8 vs. 85.5) than male caregivers. Compared to caregivers of patients undergoing open surgery, caregivers of patients undergoing endoscopic surgery exhibited less frequency (82.3 vs. 103.4, respectively) and difficulty (77.7 vs. 97.2, respectively) with stressful events. Conclusion: Our preliminary baseline data suggests stress levels range from normal to clinically significant in our caregivers and many carry stress that impacts external relationships or interactions but not the way they view their child or how they parent. Additionally, gender and procedure type impact baseline stress levels. We continue to follow this cohort over time to evaluate how stress levels change post-surgery, and areas of caregiver life most impacted.

Coping Among Parents of Teens With Inflammatory Bowel Disease.

Parents of teens with inflammatory bowel disease must prepare their children for independent disease self-management. This study characterizes the stressors and coping strategies adopted among parents of teens with inflammatory bowel disease. Teens aged 16-22 years with inflammatory bowel disease who were consecutively seen by a pediatric gastroenterologist prior to transition to adult-centered care and their parents completed sociodemographic data, and two validated questionnaires for coping (Coping Health Inventory for Parents) and stress (Pediatric Inventory for Parents). Sixty-six patient-parent pairs were enrolled in this study-impairment was highest in role function (e.g., trying to attend to the needs of other family members, being unable to go to work, and feeling uncertain about how to maintain consistent discipline). These concerns seemed to be most pronounced among parents of children 18 years and older (χ (df) = 1, p = .04) with Crohn disease (χ (df) = 1, p = .02). The top five listed concerns differed depending on the caregiver's gender. Parents of teens with inflammatory bowel disease are concerned about parenting role function. Parents of teens 18 years and older with Crohn disease reported the highest stress. Caregiver gender differences were noted.

Parenting Stress, Sleep, and Psychological Adjustment in Parents of Infants and Toddlers With Congenital Heart Disease.

Parents of children with chronic medical needs report increased parenting challenges, poor sleep, and maladjustment. The impact of parenting stress on both sleep and adjustment has yet to be evaluated for parents of infants and young children with congenital heart disease (CHD). We studied the relations among parenting stress, sleep, and adjustment in parents of infants and toddlers with CHD. We expected that sleep quality would mediate the relationship between parenting stress and adjustment. Sixty-nine parents of infants and toddlers with CHD were evaluated on self-report measures of illness-related parenting stress (Pediatric Inventory for Parents), sleep (Pittsburgh Sleep Quality Index), and psychological adjustment (Brief Symptom Index-18). The parents of infants and toddlers with CHD reported elevated levels of parenting stress, sleep problems, and maladjustment. The positive relationship between parenting stress and parent maladjustment was mediated by sleep quality. Findings suggest that parents of infants and toddlers with CHD report high parenting stress, poor sleep, and maladjustment. Analyses indicate the stress-adjustment relationship is mediated by quality of sleep. Given the multiple demands on parents of infants and children with CHD, it is important to attend to parents' overall functioning and mental health. Our findings highlight targets for intervention to improve the well-being of parents of young children with CHD.