Burden In Caregivers Of Children Research Articles

Effect of brief psycho-education module on psychological wellbeing and family burden in caregivers of children with intellectual disability

Effect of brief psycho-education module on psychological wellbeing and family burden in caregivers of children with intellectual disability

Psychiatric disorders and caregiver burden in children with transfusion dependent β-thalassaemia and their caregivers

Children with thalassemia need care from the first years of life owing to the physical and psychological effects of their disorder. Thalassemia is a concern not only for the children's physical health but also the mental health of themselves and their caregivers.To screen the psychosocial problems and assessment of psychiatric morbidities among thalassaemic children and their caretakers, along with an assessment of caregiver burden in them.In this observational cross-sectional study, children with transfusion-dependent thalassemia, were included and were assessed for psychiatric morbidity and global functioning. Their parents were assessed for psychiatric morbidity and the caregiver burden they faced. All the parents completed two different questionnaires to assess their knowledge about the psycho-social functioning [using Pediatric Symptom Checklist-35 (PSC-35)] of their children and the level of the burden faced by them by Caregiver Burden Scale (CBS).A total of 46 children (28 boys and 18 girls) with transfusion-dependent thalassemia with a mean age of 8.83 ± 2.70 years and 46 parents (12 fathers and 34 mothers) were included in this study. More than 32 children had some psychosocial problems on screening by PSC-35. On assessment by CBS moderate caregiver burden was perceived in domains of general strain, isolation, disappointment, emotional involvement, and environment. A total of 65.3% of children and 62.7% of parents were diagnosed with psychiatric problems.Thalassemia affects not only the persons with the disorder but also their caregivers in several aspects, including their psychosocial well-being. This study emphasizes the role of a supportive group in the psychological well-being of caregivers, which could be used to prevent the pathological effects of caregiver burden and enhance their psychological well-being through counselling.

Burden in caregivers of children with congenital Zika syndrome in Pernambuco, Brazil: analysis and application of the Zarit burden interview scale.

This study aimed to analyze the burden on caregivers of children with congenital Zika syndrome associated with viral infections in the state of Pernambuco, Brazil using the Zarit Burden interview scale. A quantitative study was conducted at the Oswaldo Cruz University Hospital, Recife City, State of Pernambuco, Brazil. By convenience sampling, 56 mothers, two grandmothers, and two caregivers were enrolled, all are female. Data were collected from July 2019 to January 2020. In the analysis, the percentage frequencies were calculated. The normality was identified using the Kolmogorov-Smirnov test, and participant profiles were compared using Student's t-test and analysis of variance. In descriptive statistics, quantitative variables are described by the median and interquartile range and categorical variables by proportions using the Chi-square test. In the comparative analysis, all factors evaluated were significant, except for the "gestational period in which the disease occurred" (p<0.111). The significance of differences in all activities was evaluated. In the mean comparison test, only the factor "has a job" was significant (p<0.043). When comparing the average of caregivers' responses to the categories of the Zarit burden interview scale, the highest level of burden was regarding the feeling that the child is dependent on the caregiver (3.62 points). Caregiver burden was classified as absence, light, moderate, and high. The consequences of contracting the Zika virus in the first trimester of pregnancy, lack of paid work, financial scarcity, full-time dedication to the child, and lack of time for themselves increase the burden on caregivers. Thus, caregivers have mild burden.

Disease Burden in Caregivers of Children with Congenital Heart Disease in Children’s Medical Center, Tehran, Iran

Background: Congenital Heart Disease (CHD) is the most common congenital malformation in infants. The burden is defined as the perceived caregiver’s sufferings of their emotional or physical health, social and financial life as a result of caring for loved ones. Lifelong CHD endures significant burdens on patients, families, and society. Parents of children with chronic illnesses such as CHD are more likely to be challenged than other parents. Furthermore, evidence shows the impact of this burden on parents’ health. Therefore, this study aimed to evaluate the burden on caregivers of patients with CHD.&#x0D; Methods: In this cross-sectional study, 72 caregivers of patients with CHD in the Children’s Medical Center, Tehran, Iran were recruited. Face-to-face interviews with caregivers had been done. The demographic and disease-related data were collected. Zarit Burden Interview (ZBI) was applied for disease burden assessment. Statistical analysis was performed in SPSS version 22.&#x0D; Results: In the present study, most caregivers 34 (47.2%), suffered from moderate to severe burden. The mean caregiver burden score was 42.78 which is categorized as a moderate to severe burden score. The siblings’ number and level of caregivers’ education had a significant association with the caregiver’s disease burden.&#x0D; Conclusion: CHD is associated with a significant caregivers’ disease burden. Although the disease-related factors were not related to disease burden, the higher caregivers’ education was related to fewer caregivers’ disease burden. Therefore, paying attention to the caregiver’s burden is an important clinical issue.

Burden Experienced by Primary Caregivers of Children With Psychotic Disorders and at Clinical High Risk for Psychosis.

Despite the existing research exploring caregiver burden in adult psychosis, few studies have examined the experience of providing care to children diagnosed with psychotic disorders (PDs) and those identified as having clinical high risk for psychosis (CHR-P). This study measured the level of burden in caregivers of children with PD and CHR-P and examined associated risk factors, including social support, caregiver-child relationship, severity of illness, and frequency of psychiatric hospitalizations. A total of 56 caregivers completed validated measures and provided demographic information. Measures included the Zarit Burden Interview, the Multidimensional Scale of Perceived Social Support, the Behavior Assessment System for Children, Third Edition, Parenting Relationship Questionnaire-Child and Adolescent Form (BASC-3 PRQ-CA), and the Clinical Global Impression-Severity scale. The majority of caregivers were women (86%), mothers (84%), White (63%), married (66%), working full-time (50%), college-educated (79%), and whose mean age was 45.7 years (SD = 8.09). Nearly half of the caregivers (45%) reported a high level of caregiver burden, 39% rated their burden in the mild to moderate range, and 16% reported little to no burden. There was no significant difference in mean burden between PD and CHR-P groups. Higher caregiver burden was associated with lower levels of social support (r = -.408, p = .002), lower levels of parenting confidence (r = -.514, p < .001), higher levels of relational frustration (r = .612, p < .001), and higher severity of illness (r = .316 p = .025). These findings underscore the critical unmet need for support for caregivers of children with PD and CHR-P. Applications to clinical practice are discussed.

388 Impact of crisaborole & tacrolimus 0.03% on patient-reported outcomes and caregiver burden in children with atopic dermatitis

Poor quality of life (QoL) is common in children with atopic dermatitis (AD) and their caregivers. This study used patient-reported outcomes (PROs) to monitor the impact of crisaborole (CRIS) and tacrolimus 0.03% (TAC) on children (2-15 years) with mild/moderate AD and on caregiver burden. This open-label study randomized 47 child-caregiver dyads to CRIS or TAC for 12 weeks. Disease severity (Eczema Area & Severity Index [EASI], % body surface area, Investigator Global Assessment [IGA]), QoL (Children’s Dermatology Life Quality Index, Family Dermatology Life Quality Index), itch (PROMIS Peds Itch-Short Form), anxiety (PROMIS Anxiety-Peds), pain interference (PROMIS Pain Interference-Peds), depression (PROMIS Depression-Peds), sleep (Children’s Sleep Habits Questionnaire), and caregiver burden (Caregiver Burden Inventory) were assessed at baseline, 6 and 12 weeks.

Caregiver Burden of Children with Chronic Disease at Teaching Hospital

Handling children with chronic diseases may negatively impact caregivers' quality of life. This research objective is to identify the caregiver burden in children with chronic disease care. A cross-sectional study used the PedsQl Family Impact Module questionnaire to identify the caregiver burden among 230 caregivers of children with chronic diseases at UMCC. The participant perceived burden (n=154, 67%) with mean M=1.67 (SD 0.47). However, age and gender are not significantly associated with caregiver burden. In conclusion, caregivers perceive the burden of caring for children with chronic diseases. Therefore, continuous support from healthcare providers may help reduce the caregiver burden. Keywords: Caregiver, burden, children, chronic disease eISSN: 2398-4287 © 2022. The Authors. Published for AMER ABRA cE-Bs by e-International Publishing House, Ltd., UK. This is an open access article under the CC BYNC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/). Peer–review under responsibility of AMER (Association of Malaysian Environment-Behaviour Researchers), ABRA (Association of Behavioural Researchers on Asians/Africans/Arabians) and cE-Bs (Centre for Environment-Behaviour Studies), Faculty of Architecture, Planning &amp; Surveying, Universiti Teknologi MARA, Malaysia. DOI: https://doi.org/10.21834/ebpj.v7i20.3300

Caregiver Burden in Caregivers of Children With Special Health Care Needs and Association With Chronic Pain.

Chronic noncancer pain (CNCP) affects millions of individuals in the United States but evidence of its prevalence among caregivers of children with special health care needs is sparse. We sought to estimate the prevalence of CNCP and its association with caregiver burden, in a nationally representative sample. Retrospective cross-sectional study using pooled Medical Expenditure Panel Survey data for 2010-2015. Within interviewed households, family groups consisting of at least 1 parent and 1 child (0-17 y) were identified. CNCP was identified by one or more International Classification of Diseases, Ninth Revision (ICD-9)-CM codes utilizing previously published approaches. Level of caregiver burden was defined using a validated screener questionnaire identifying children with high burden of care (ie, special health care needs), for example, high or low burden. We estimated prevalence of CNCP as a function of caregiver burden, as well as the association of risk factors with CNCP, including parent sociodemographic features, clinical diagnoses, and family level characteristics. We identified 46,525 caregivers of whom 3.6% reported experiencing high caregiving burden. The prevalence of CNCP was 25.5% and 14.0% among parents with high compared with low caregiving burden, respectively. Odds of CNCP were higher among parents with high compared to those with lower caregiver burden (odds ratio=1.29, 95% confidence interval=1.06-1.55). Being obese, experiencing disability, and having a mental health diagnosis were associated with higher odds of CNCP. Chronic pain is more common among caregivers with high caregiver burden. Our findings highlight the need to further explore the nature and impact of risk factors on caregiver health and disability.

Depression and psychological burden in a sample of caregivers of children with CKD

Abstract Background Studies have suggested that caregivers of patients with chronic illnesses experience higher rates of depression and burden than the general population. The Aim of this study To assess the rate of depression and psychological burden in caregivers of children with CKD and compare it with a healthy control group. Patients and Methods This is a case control comparative study conducted in El Demerdash pediatric hospital aimed at screening symptoms of depression and psychological burden in a sample of 30 cases of caregivers of children with CKD compared to 30 controls of caregivers, as well as socioeconomic stress as a factor for burden and depression. Results The current study confirmed that caregivers of children with chronic kidney disease have significantly more depression and psychological burden compared to their matched controls. Conclusion There is a high rate of depression and burden in caregivers of children with CKD which often go unnoticed and neglected.

Contextual Therapy for Couples who are Primary Caregivers for a Parent(s) with Alzheimer’s Disease

The number of individuals experiencing Alzheimer’s disease is increasing as the population ages. The majority of individuals experiencing Alzheimer’s disease receive care from a family member, most often a spouse or adult child. Adult child caregivers have unique needs and life situations that put them at increased risk for caregiver burden and burnout. While both individual therapy and family therapy have been used with family caregivers, little scholarship has explored the role of couples therapy in improving caregiver outcomes. This article explores contributing factors to adult child caregiver burden and applies contextual therapy to treat these problems in couples therapy. We use a clinical vignette to illustrate the application of fairness, balance, loyalty conflicts, and constructive/destructive entitlement to caregiving. In all, we identify common dynamics in couples wherein one or both partners are primary caregivers for parents with Alzheimer’s disease and provide clinical suggestions on how to assess and treat these challenges in couples therapy.

Evaluation of Caregiving Burden in Caregivers of Children with Chronic Disease

Evaluation of Caregiving Burden in Caregivers of Children with Chronic Disease

Psychological Distress among Caregivers of Children with Neurodevelopmental Disorders in Nepal.

Parenting a child with neurodevelopmental disorder (NDD) is related to a higher rate of anxiety and depression, increased stress, and reduced quality of life. Although there is reason to believe that parenting children with NDD in low- and middle-income countries (LMIC) can be challenging, there is a lack of knowledge on the psychological distress among these caregivers, especially in rural areas. The aim of the study was to examine the psychological distress among caregivers having children with NDD in rural Nepal. Sixty-three caregivers were visited in their homes and interviewed by experienced mental health professionals. This study examined demographic information, severity of disability, perceived caregiver burden, and psychological distress, measured by the General Health Questionnaire-12 (GHQ-12). The study found a high level of psychological distress in the caregivers (M = 5.38, SD = 2.8). A majority (90.5%) scored two or higher, indicating the presence of a common mental disorder (CMD). Almost half (46%) scored six or higher, indicating a high level of distress. A majority of the caregivers reported that caring for their disabled child had a negative effect on the caregiver’s economy (70%), physical health (65%), social life (64%), and dreams and expectations for the future (81%). There was a significant relationship between the caregiver’s psychological distress (GHQ-12) and degree of disability in the child (Gross Motor Function Classification System), degree of caregiver burden, feeding problems, having health workers as a possible source of help, receiving incentive from the government, having somebody to confide in, and caregiver illiteracy. A forward regression analysis entering the significant factors indicated that caregiver burden, having someone to confide in, and having health workers as a possible source of help were significant related to psychological distress. The final step of the model explained 42.4% of the variance in psychological distress among the caregivers. The study indicates a high level of psychological distress and high overall burden in caregivers of children with NDD in rural Nepal. Further implications for research and service development are discussed.

Prader-Willi Syndrome in children: Quality of life and caregiver burden.

To evaluate quality of life and caregiver burden in children with Prader-Willi syndrome. All children with Prader-Willi syndrome, attending a tertiary referral centre, were invited to participate (n=44). Quality of life was evaluated using the PedsQL questionnaire. Family impact modules and parent proxy reports evaluated the impact on the quality of life of the child and family. Additional challenges were captured using a burden questionnaire. Nineteen children participated. Median age was 7.9years (0.6-18.1years). Majority were female (n=14, 74%). Median age at diagnosis was 2.5weeks (range birth-2years 8months). Growth hormone treatment was in place for the majority (n=14, 74%). Increased weight and age were identified as significantly impacting on family functioning and relationships. Parents perceived increased weight and age to have a significant negative impact on their child's psychosocial health and social functioning. Caregivers of children >12years reported an increased burden of care. Disruption to routines, restriction of social activities and psychological difficulties were reported as increasing caregiver burden. Prader-Willi syndrome impacts significantly on quality of life for both the affected child and the family.

PND96 A Systematic Literature Review of the Humanistic Burden in Caregivers of Children and Adolescents with Autism Spectrum Disorder

Autism Spectrum Disorder (ASD) is a lifelong developmental disorder with a substantial clinical and humanistic burden for patients and caregivers. A systematic literature review (SLR) was conducted to provide a comprehensive review of instruments that have been used to measure the humanistic burden of ASD in the US, France, UK, Germany, Italy and Spain. We focus on the impact of ASD on caregiver quality of life (QoL). The literature search was conducted on July 24th 2019, for the period 2014-2019 to identify instruments used to capture humanistic burden. Inclusion criteria were pediatric population (2 to <18 years), US and EU-5 and original articles in English language. Records focusing on caregivers QoL were selected in this analysis. A total of 64 studies were included in this analysis as they are specific to the caregiver (5 European studies). Four generic scales, four specific caregiver QoL scales and 92 functioning tools have been used to assess impact of ASD on Caregiver QoL. The most frequently used QoL scales were: EQ-5D (n=4 studies) and SF-6D/SF-12(n=4/4) as generic tools and FQOL (n=6) and CarerQOL (n=4) as specific tools.The mean caregiver QoL was estimated as EQ-5D = 0.85, SF-6D score of 0.74 and CarerQol-VAS = 7.4. These scores were negatively correlated with child sleep problems and caregivers with <5 hours sleep per night had significantly lower scores. A comparison with the US general population (EQ-5D = 0.89, SF-6D = 0.80) shows lower ASD caregiver scores, particularly in terms of SF-6D. A limited number of studies have been conducted in Europe. The SLR established that caregivers of ASD children have decreased QoL when compared to the general population. However, no consensus currently exists on the most appropriate tool to capture caregiver QoL and the large variety of available tools makes comparisons challenging.

Behavioral Problems, Quality of Life and Caregiver Burden in Children with Idiopathic Nephrotic Syndrome: Improving Outcomes by Pragmatic Interventions in a Resource-Poor Setting.

A cross-sectional questionnaire-based study was conducted on 38 children with idiopathic nephrotic syndrome. The prevalence and pattern of behavioral abnormalities was studied. Except in the conduct domain, the prevalence of behavioral problems was comparable with controls. Severe complications of disease and adverse drug effects were significantly associated with abnormal behavior. The Quality of life (QOL) of these children and their caregivers was assessed. It appeared to be unaffected by illness. Additional findings were high maternal literacy, no disruption of schooling, regular follow-up and good adherence to treatment. Behavioral problems in childhood nephrotic syndrome can be minimized by regular follow-up and supportive interventions to reduce caregiver burden. Such children and their caregivers can do well in terms of QOL, even in a resource-poor setting, with appropriate psycho-social support.

Caregiver burden in children with cystic fibrosis and primary ciliary dyskinesia

Caregiver burden impacts both the social and economic framework of society. Cystic fibrosis (CF) causes significant caregiver burden, but the current data is scarce. In the case of primary ciliary dyskinesia (PCD), even less is known. This study aims to compare the caregiver burden of the parents of patients with CF and PCD. Patients with CF and PCD between the ages of 6 to 13 and their parents were included. Patients' clinical information and parents' demographics were recorded. Caregiver burden was measured with Zarit Caregiver Burden Scale (ZCB), while the quality of life (QOL) was measured with CFQOL-revised (CFQOL-R) and PCD QOL questionnaire as the patients' age and diagnosis indicated. A total of 63 patients, 44 with CF (69%) and 85 caregivers (35 mothers, 6 fathers, and 22 mother-father dyads) participated in the study. Caregiver burden was significantly higher in mothers of the CF group with a mean ZCB of 30.5 ± 10.7 when compared to the PCD group with a mean ZCB of 21.93 ± 8.26 (P = .006). This was similar in fathers with mean ZCB of 27.5 ± 9.21 in the CF group and 20.36 ± 7.43 in the PCD group (P = .03). In correlation analyses, mothers' caregiver burden moderately and inversely correlated with CFQOL-R subscales in the CF population. Caregiver burden is significantly higher in the CF population when compared to PCD. It is correlated with pulmonary functions and QOL in patients with CF.

Reliability and validity of the revised impact on family scale (RIOFS) in the hospital context

BackgroundThe lack of formal instruments to measure Burden in primary caregivers of Children in a hospital context is limited because mostly of published instruments are related to cancer survivors, ambulatory environment or general context for children with chronic conditions, but none of them adapted property to prolonged hospitalization context. This leaves the rising population of hospitalized chronic children’s caregivers without a proper assessment. The aim of this study was to develop a version of the Revised Impact on Family Scale adapted to primary caregivers of chronic hospitalized children. A cross-sectional study with two main stages was conducted. The first one describes the linguistic and contextual adaptation process of the instrument, and the second refers to the psychometric testing and analysis..ResultsLess than 15% of the participants expressed problems with some adapted items in the scale. Eighty-six caregivers were evaluated at Josefina Martinez Hospital, mostly female (34.2 ± 11.6 years old). Majority of participants were graduated from high school, salaried employee and mothers of the chronic child. The scale exhibits a high level of internal consistency (Cronbach’s alpha 0.73), excellent intra-observer reliability (Intraclass Correlation Coefficient 0.9), acceptable empirical evaluation of content validity and low and negative construct validity (Pearson’s correlation coefficient − 0.23).ConclusionsThis adapted version of the Revised Impact on Family Scale to the hospital context is a reliable, valid, self-administered and simple instrument to implement in order to assess the burden of primary caregivers with chronic hospitalized children.

Caregiver burden in children with intellectual disability: Does special school education help?

Background:Caregivers are playing a vital role in mentally ill patients in India. Families of children with intellectual disability encounter a high degree of stress such as physical, emotional, and financial.Aim:The aim of this study was to compare and evaluate the caregiver burden and depression between the special school-going children and nonschool-going children with intellectual disability.Materials and Methods:The present study was conducted on caregivers of patients with intellectual disability at Radianz Health Care and Research Private Limited, Ahana Hospitals, Akash Special School, and M. S. Chellamuthu Trust and Research Foundation, Madurai. The Zarit Burden Interview scale was utilized to assess the level of burden experienced by the caregivers. The Major Depression Inventory scale was utilized to assess the severity of depression experienced by the caregivers. The Binet Kamat Test of Intelligence was administered by a psychologist to assess the IQ level of the children.Results:Totally 80 caregivers were participated in the study. The mothers of children with intellectual disability suffered from burden and depression when compared to the fathers (P < 0.0001). The parents of nonschool-going children had a higher level of burden and depression as compared to the parents of special school-going children (P < 0.0001).Conclusion:Special school is playing a vital role for children with intellectual disability. It can be reasonably concluded from the study that both the groups face burden and depression. However, the severity of burden and depression is comparatively higher among parents of nonschool-going children.

Feeding and swallowing impairment in children with stroke and unilateral cerebral palsy: a systematic review.

This systematic review targeted frequency estimates of dysphagia (feeding and swallowing problems), related health outcomes, and caregiver burden in children with stroke or unilateral cerebral palsy (CP). Six electronic databases were searched from their inception to November 2017 along with a manual search of eight relevant journals. Two blinded raters assessed abstracts and full articles for eligibility. Discrepancies were resolved by consensus. Accepted articles were evaluated for quality. Data were extracted and analysed descriptively. Of 1660 abstracts, five met inclusion criteria, of which three focused on stroke and two unilateral CP. Across studies, operational definitions of feeding and swallowing varied. Insufficient details were provided on assessment methods and timing. Reported frequencies of dysphagia ranged from 24.2% to 88.6%. One study reported dysphagia-related health outcomes and none reported caregiver burden. These results suggest that dysphagia is common in children with stroke and unilateral CP; however, its frequency is yet unknown as is its impact on health and caregiver burden. Availability of a standardized tool to identify dysphagia in these children accurately is a recommended first step to address this evidence gap. There is limited data on the incidence of dysphagia after childhood stroke and unilateral cerebral palsy. Available evidence shows reported dysphagia frequencies from 24.2% to 88.6%. Only one study reported on dysphagia-related health outcomes. No study reported on caregiver burden.

Prevalence of caregiver burden, depressive and anxiety symptoms in caregivers of children with psychiatric disorders in Durban, South Africa

BackgroundThere is increased caregiver burden, depressive and anxiety symptoms associated with the care of mentally ill children. This may be influenced by child or caregiver factors such as socio-demographic and clinical factors and has not been explored in the South African context.AimTo describe the prevalence of depression, anxiety symptoms and caregiver burden in caregivers of children treated at psychiatric outpatient services at two public sector hospitals.MethodsA cross-sectional questionnaire study of 121 adult primary caregivers of children aged 1–17 years with mental illness using a socio-demographic questionnaire, Patient Health Questionnaire (PHQ-9), Generalised Anxiety Disorder-7 Questionnaire (GAD-7), and the Child and Adolescent Impact Assessment (CAIA) to assess caregiver burden.ResultsThe caregivers were predominantly female (n = 96, 79.5%) and married (n = 72, 59.5%), with a mean age of¬34.99 years (SD 10.38), and 74% were mothers. Among the children, there was a predominance of boys with a 1:4 ratio of girls to boys. The most common diagnoses in the children were attention deficit hyperactivity disorder (ADHD) (n = 56, 59.6%) and autism spectrum disorder (n = 22, 23.4%). Fifty-four (44%) caregivers were depressed with a mean PHQ9 score of 5.75 (SD 5.98), and 65 (54 %) reported anxiety symptoms with a mean GAD7 score of 5.71 (SD 5.03). Mothers reported significantly higher levels of anxiety (p = 0.045) and experienced higher impact on feelings of personal well-being on the CAIA (p = 0.004) in comparison with fathers. Caregiver burden was predominantly reported in the domains of restrictions in activities (n = 40, 32.8%), feelings of personal well-being (n = 37, 30.7%) and economic impact (n = 21, 17.4%).The caregivers of children with ADHD reported higher anxiety levels (p = 0.023) than for autistic children. A diagnosis of autistic spectrum disorder was associated with higher income impact (p = 0.004) and restrictions impact (p = 0.001) than for children with ADHD diagnosis in terms of caregiver burden.ConclusionThe high prevalence of depression and anxiety symptoms reported amongst caregivers suggests the need for improved mental health screening and psycho-social support programmes for caregivers, particularly mothers. Programmes should consider the impact of caregiving, particularly on mental health, income and social restrictions of caregivers.