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1.  Study of behavioral problems in multi-transfused thalassemic children 
Indian Journal of Psychiatry  2012;54(4):333-336.
Background:
Beta-thalassemia major is a chronic disorder of blood, having an extensive impact on the affected child. It involves lifelong therapeutic regime, with repeated blood transfusions. With improved life expectancy, due to improved medical management psychosocial aspects of thalassemia are gaining importance.
Objective:
To assess the behavioral problems in multi-transfused thalassemic children and psychosocial factors affecting them.
Setting:
The study was conducted in a tertiary care level hospital and research institute catering mainly to a population of low socioeconomic status.
Design:
The study was a cross-sectional study involving 50 multi-transfused thalassemic children of age 5–10 years.
Materials and Methods:
Fifty multi-transfused thalassemic children, aged 5–10 years, not suffering from any other major medical illness, were included. Child Behavior Check List (Achenbach) (CBCL) was used to collect data from each parent regarding the child's behavior. Parental Attitude Scale (Rangaswamy 1989) was applied. Descriptive statistical analysis was used with analysis of variance (ANOVA) and Student's t test to find the significance of data.
Results:
The CBCL total scores were high in 32% patients, indicating the presence of behavioral problems. Higher CBCL scores were found in children of older age group, those with poor school performance, whose mothers’ education was more than eighth standard, had history of death of thalassemic relative in family, greater duration of diagnosed illness, poor pre-transfusion hemoglobin level, and who had longer periods of school absenteeism.
Conclusions:
Behavioral problems are common in multi-transfused thalassemic children. Early diagnosis and intervention of behavioral problems in these children would make them cope with thalassemia better.
doi:10.4103/0019-5545.104819
PMCID: PMC3554964  PMID: 23372235
Behavioral problems; child behavior check list; multi-transfused thalassemia
2.  Pregnant women affected by thalassemia major: a controlled study of traits and personality 
BACKGROUND:
The reproductive and sexual health issues concerning persons affected by thalassemia major are complex. The study was planned to investigate the psychological attitudes and expectations in a group of thalassemic pregnant women attending hospital for regular blood transfusion.
METHODS:
This is a preliminary cross-sectional study involving 20 consecutive thalassemic patients and a control group of 42 healthy pregnant volunteers. The personality structure was evaluated by Rorschach’s test and the presence of psychic symptoms by SCL-90-R and STAI.
RESULTS:
Narcissism and sexual traumas are significantly higher in thalassemic women with respects to the control group. Also the percent of anxiety and depression observed with the SCL-90-R was significantly higher than in control group (45% vs. 3%, p < 0.001, mean and SD values are 1.65 ± 0.15 vs. 0.43 ± 0.18 for anxiety; 55% vs. 12%, p < 0.001, mean and SD values are 1.76 ± 0.18 vs. 0.85 ± 0.25 for depression). The score observed with the STAI shows that the trait of anxiety differed between thalassemic pregnant women and the control group, even though the score values aren’t pathologic in neither group (87% vs. 42%, p < 0.05, mean and SD values are 33 ± 0.8 vs. 22 ± 0.2).
CONCLUSIONS:
This study addresses the need for developing, implementing and evaluating proper psychological support for thalassemic pregnant patients. Moreover, psychological screening and support prior to, during and following pregnancy would be indicated.
PMCID: PMC3082795  PMID: 21526066
Personality; Pregnancy; Thalassemia Major
3.  Parents' concerns about children are highly prevalent but often not confirmed by child doctors and nurses 
BMC Public Health  2008;8:124.
Background
The aim of this study was to assess the prevalence in the general population of parents' concerns about the development of their child, to identify groups at risk and to assess the association between parents' concerns and professional judgement.
Methods
We obtained cross-sectional data on a Dutch nationally representative sample of children aged 14 months, 3 3/4, 5–6 and 8–12 years within the setting of routine well-child visits provided to the entire population. A total of 4,107 participated (response rate 85.3%). Data were about concerns that parents reported by questionnaire before the visit regarding behavioural and emotional problems, developmental delay, consequences of disease and contact with peers that needed professional assistance, and about the assessment of these domains by doctors and nurses during the visit. Moreover, we obtained data on parent-reported psychosocial problems using the Infant-Toddler Social and Emotional Assessment and the Child Behavior Checklist.
Results
Of all parents, 49.3% reported some concerns and 8.7% reported frequent concerns, most frequently on child behaviour. Frequent concerns were most likely to refer to young children, children from labour immigrant families, with fathers of medium educational level and in low-income families. The prevalence rates of professional-assessed parenting problems were much lower than parent-reported ones. The rates of psychosocial problems were highest in the case of shared concerns, but also higher if parents expressed concerns that were not confirmed by professionals.
Conclusion
A very large proportion of parents of young children have concerns regarding their child, but agreement on these concerns with child health professionals is relatively low.
doi:10.1186/1471-2458-8-124
PMCID: PMC2383909  PMID: 18423036
4.  The effect of family-centered empowerment model on quality of life of school–aged children with thalassemia major 
BACKGROUND:
Chronic nature of thalassemia causes changes in different aspects of life in patients, including their quality of life. Because of the important role of family in caring for children with thalassemia, this study was done to evaluate the effect of family-centered empowerment model on quality of life of the children aged 6-12 years with thalassemia in Kerman Thalassemia Center.
METHODS:
The present experimental study was carried out on 86 thalassemic children aged 6-12 years who were randomly divided into case and control groups. Data collection tools consisted of demographic and general quality of life questionnaires in children that included physical, emotional and social aspects in addition to school functions. The questionnaires were used after determination of content validity and reliability by internal correlation method. This model was performed in test group according to four steps (threat perception, problem solving, educational participation and evaluation). Quality of life was measured 1.5 months after the intervention.
RESULTS:
The results showed that the average quality of life of thalassemic children before the intervention was 26.23 in test group and 27.62 in the control group and they were not significantly different (p > 0.05). However after performing the model, the average quality of life in the test group reached 35.19 while it was 28.02 in control group and the observed difference was statistically significant (p < 0.05).
CONCLUSIONS:
According to the impact of this model on quality of life in thalassemic children, it is recommended that evaluating the effectiveness of this model should be considered in further studies of other ages and other chronic diseases.
PMCID: PMC3583099  PMID: 23450080
Children; empowerment; quality of life; thalassemia
5.  Externalizing Behaviors among Children of HIV Seropositive Former and Current Drug Users: Parent Support Network Factors as Social Ecological Risks 
Journal of Urban Health   2007;85(1):62-76.
Children affected by their parents’ dual drug use and HIV/AIDS face considerable challenges to their psychosocial development, including parent dysfunction and foster care placement. While HIV/AIDS may increase parents’ mobilization of social support, their drug use may restrict who is available to help them, with potential implications to the adjustment of their children with whom they remain in contact. This study sought to identify dually affected children’s living situations, and parent and parent’s support network factors as correlates of children’s externalizing problem behaviors. An urban community sample of 462 HIV seropositive, current or former drug-using parents were queried about their children aged 5–15 years old. One hundred ninety-four children were reported by 119 parents. The outcome was children’s externalizing behaviors of ever having been suspended or expelled from school, criminal-justice system involvement, or illicit drug or heavy alcohol use. Independent variables included kin and drug users in parent’s support network. Generalized estimating equations were used to adjust for the potential correlation of children of the same parent. Among parents, 63% were mothers, 57% current opioid or cocaine users, 85% were African American, 35% had AIDS or CD <200, and 53% had high depressive symptoms (CES-D ≥ 16); median age was 38. Among children, median age was 12; 23% lived with the nominating parent, 65% with other family, and 11% in non-kin foster care. While only 34% of parents reported child custody, 43% reported daily contact with their child, and 90% reported high emotional closeness. Parents reported externalizing behaviors among 32% of the children. Logistic regression indicated that externalizing behavior was positively associated with parent’s physical limitations and proportion of illicit drug users in parent’s support network. A significant interaction was found indicating that the effect of parent’s support network-level drug use was greater for children living with versus not living with the parent. The model adjusted for parent’s current drug use and depressive symptoms, which were not significant. Results indicate that while only a minority of these dually affected children lived with the parent, the parents’ physical limitations and embeddedness in drug using support networks, particularly if living with their children, was associated with the children’s maladjustment. It is plausible that these factors interfere with parenting, expose the children to conflict or adverse social influences, or obligate children to assume caregiving for their parent. While dually affected children’s contact with their parents may have important benefits, results suggest it presents ongoing needs for intervention with the children, their parents, and caregivers.
doi:10.1007/s11524-007-9236-9
PMCID: PMC2430131  PMID: 18004664
Parental illicit drug use; HIV/AIDS affected children; Child psychosocial functioning; Externalizing behaviors; Social support networks; Informal caregiving; Foster care
6.  Depression in mothers of children with thalassemia or blood malignancies: a study from Iran 
Background
Several studies have found that parents of children with chronic diseases or disabilities have higher depression scores than control parents. Mothers usually take on the considerable part of the extra care and support that these children need and thus are at markedly increased risks of suffering from psychological distress and depression. The main aim of the present study was to investigate if mothers of children with thalassemia or blood malignancies have higher scores of depression compared with a group of control mothers.
Methods and materials
In this cross – sectional study, 294 mothers were recruited in three groups and assessed using the Beck Depression Inventory (BDI): mothers of children with thalassemia, mothers of children with blood malignancies and a control group. SPSS version 11.5 with chi square, ANOVA, linear and logistic regression were used for statistical analysis.
Results
The only variable bearing a statistically significant relationship with the depression score of mothers was the child's disease: for thalassemia with OR of 2.17 (95% CI = 1.16–4.0, P = 0.015), for blood malignancies with OR of 2.71 (95% CI = 1.48–4.99, P = 0.001).
Discussion and conclusion
The results of this study can contribute to the development of a screening program for decreasing depression burden and promoting quality of life for mothers of children with thalassemia or blood malignancies.
doi:10.1186/1745-0179-2-27
PMCID: PMC1599717  PMID: 17020622
7.  Children and adolescents adjustment to parental multiple sclerosis: a systematic review 
BMC Neurology  2014;14:107.
Background
Families are the primary source of support and care for most children. In Western societies, 4 to 12% of children live in households where a parent has a chronic illness. Exposure to early-life stressors, including parenting stress, parental depression and parental chronic disease could lead to harmful changes in children’s social, emotional or behavioural functioning. Little is known about the child living with a parent who has Multiple Sclerosis (MS). We systematically reviewed the literature regarding possible effects of having a parent with MS on the child’s or adolescent's psychosocial adjustment.
Methods
The following databases: MEDLINE, PsychInfo, CINAHL, EMBASE, Web of Knowledge, ERIC, and ProQuest Digital Dissertations were searched (from 1806 to December 2012). References from relevant articles were also manually searched. Selected studies were evaluated using the Graphic Appraisal Tool for Epidemiology (GATE).
Results
The search yielded 3133 titles; 70 articles were selected for full text review. Eighteen studies met inclusion criteria. Fourteen studies employed quantitative techniques, of which 13 were cross-sectional and one was longitudinal. Four studies were both qualitative and cross-sectional in design. Only 2 of 18 studies were rated as having high methodological quality. Overall, eight studies reported that children of MS patients exhibited negative psychosocial traits compared with children of “healthy” parents. Specifically for adolescents, greater family responsibilities were linked to lower social relationships and higher distress. Three studies indicated that parental MS was associated with positive adjustment in children and adolescents, such as higher personal competence, while four found no statistically significant differences.
Conclusion
Although having a parent with MS was often reported to have negative psychosocial effects on children and adolescents, there was a lack of consensus and some positive aspects were also found. However, few high quality studies were identified which makes it difficult to draw evidence-based conclusions at this point. There are potentially important, long-term impacts of early life stressors, such as having a parent with a chronic disease, on subsequent life chances and health, and thus more extensive and higher quality research in this area is greatly needed.
doi:10.1186/1471-2377-14-107
PMCID: PMC4040480  PMID: 24886162
Multiple sclerosis; Child development; Parenting; Child of impaired parents; Cohort studies
8.  Zinc and Copper Status in Children with Beta-Thalassemia Major  
Iranian Journal of Pediatrics  2010;20(3):297-302.
Objective
There are some reports in which a condition of zinc deficiency and its associated outcomes with a change in concentration of serum copper among the thalassemic patients has been highlighted. The aim of this prospective study was to determine the serum zinc and copper levels in children with beta-thalassemia major.
Methods
In this cross sectional study all children under 12 years affected by beta thalassemia major (40 patients) were evaluated for serum zinc and copper levels in Qazvin thalassemia center (Qazvin, Iran) in 2007. Serum measurements for zinc and copper were performed by atomic absorption spectrophotometer.
Findings
The mean concentrations of serum zinc and copper levels were 67.35±20.38 and 152.42±24.17 µg/dl respectively. Twenty-six (65%) of thalassemic patients had zinc concentration under 70 µg/dl (hypozincemia). None of the thalassemic children had copper deficiency. No significant correlation between serum zinc level with age, weight, height, body mass index, duration of blood transfusion, desferrioxamine dose and ferritin level was observed in thalassemic patients (P=0.3).
Conclusion
This study revealed that hypozincemia is common in thalassemic patients, but in contrast, there is no copper deficiency. Further evaluation in this regard is recommended.
PMCID: PMC3446035  PMID: 23056720
Beta-thalassemia; Zinc; Copper; Children
9.  Quality of the parent-child interaction in young children with type 1 diabetes mellitus: study protocol 
BMC Pediatrics  2011;11:28.
Background
In young children with type 1 diabetes mellitus (T1DM) parents have full responsibility for the diabetes-management of their child (e.g. blood glucose monitoring, and administering insulin). Behavioral tasks in childhood, such as developing autonomy, and oppositional behavior (e.g. refusing food) may interfere with the diabetes-management to achieve an optimal blood glucose control. Furthermore, higher blood glucose levels are related to more behavioral problems. So parents might need to negotiate with their child on the diabetes-management to avoid this direct negative effect. This interference, the negotiations, and the parent's responsibility for diabetes may negatively affect the quality of parent-child interaction. Nevertheless, there is little knowledge about the quality of interaction between parents and young children with T1DM, and the possible impact this may have on glycemic control and psychosocial functioning of the child. While widely used global parent-child interaction observational methods are available, there is a need for an observational tool specifically tailored to the interaction patterns of parents and children with T1DM. The main aim of this study is to construct a disease-specific observational method to assess diabetes-specific parent-child interaction. Additional aim is to explore whether the quality of parent-child interactions is associated with the glycemic control, and psychosocial functioning (resilience, behavioral problems, and quality of life).
Methods/Design
First, we will examine which situations are most suitable for observing diabetes-specific interactions. Then, these situations will be video-taped in a pilot study (N = 15). Observed behaviors are described into rating scales, with each scale describing characteristics of parent-child interactional behaviors. Next, we apply the observational tool on a larger scale for further evaluation of the instrument (N = 120). The parents are asked twice (with two years in between) to fill out questionnaires about psychosocial functioning of their child with T1DM. Furthermore, glycemic control (HbA1c) will be obtained from their medical records.
Discussion
A disease-specific observational tool will enable the detailed assessment of the quality of diabetes-specific parent-child interactions. The availability of such a tool will facilitate future (intervention) studies that will yield more knowledge about impact of parent-child interactions on psychosocial functioning, and glycemic control of children with T1DM.
doi:10.1186/1471-2431-11-28
PMCID: PMC3098161  PMID: 21492413
10.  Psychological health of family caregivers of children admitted at birth to a NICU and healthy children: a population-based cross-sectional survey 
BMC Pediatrics  2004;4:24.
Background
There is little information in the research literature on how parents of children who spend time in a neonatal intensive care unit (NICU) adapt psychologically to the demands of caregiving beyond the initial hospitalization period. Our aim was to compare parents of NICU children with parents of healthy full-term children, looking specifically at the relationship between parental psychosocial health and child characteristics, as well as the relationship between important predictor variables and psychosocial health.
Methods
A cross-sectional survey was sent to parents as their child turned 3 1/2 years of age. The setting was the province of British Columbia, Canada. The sample included all babies admitted to tertiary level neonatal intensive care units (NICU) at birth over a 16-month period, and a consecutive sample of healthy babies. The main outcome was the SF-36 mental component summary (MCS) score. Predictor variables included caregiver gender; caregiver age; marital status; parental education; annual household income; child health status; child behavior; birth-related risk factors; caregiver strain; and family function.
Results
Psychosocial health of NICU parents did not differ from parents of healthy children. Child health status and behavior for NICU and healthy children were strongly related to MCS score in bivariate analysis. In the pooled multivariate model, parental age, low family function, high caregiver strain, and child's internalizing and externalizing behavioral symptoms were independently associated with lower psychosocial health. In addition, female gender was associated with lower psychosocial health in the NICU group, whereas lower education and child's problem with quality of life indicated lower psychosocial health in the healthy baby group.
Conclusions
Overall, parental gender, family functioning and caregiver strain played influential roles in parental psychosocial health.
doi:10.1186/1471-2431-4-24
PMCID: PMC544865  PMID: 15598353
11.  The Long-Term Health Consequences of Child Physical Abuse, Emotional Abuse, and Neglect: A Systematic Review and Meta-Analysis 
PLoS Medicine  2012;9(11):e1001349.
Rosana Norman and colleagues conduct a systematic review and meta-analysis to assess the relationship between child physical abuse, emotional abuse, and neglect, and subsequent mental and physical health outcomes.
Background
Child sexual abuse is considered a modifiable risk factor for mental disorders across the life course. However the long-term consequences of other forms of child maltreatment have not yet been systematically examined. The aim of this study was to summarise the evidence relating to the possible relationship between child physical abuse, emotional abuse, and neglect, and subsequent mental and physical health outcomes.
Methods and Findings
A systematic review was conducted using the Medline, EMBASE, and PsycINFO electronic databases up to 26 June 2012. Published cohort, cross-sectional, and case-control studies that examined non-sexual child maltreatment as a risk factor for loss of health were included. All meta-analyses were based on quality-effects models. Out of 285 articles assessed for eligibility, 124 studies satisfied the pre-determined inclusion criteria for meta-analysis. Statistically significant associations were observed between physical abuse, emotional abuse, and neglect and depressive disorders (physical abuse [odds ratio (OR) = 1.54; 95% CI 1.16–2.04], emotional abuse [OR = 3.06; 95% CI 2.43–3.85], and neglect [OR = 2.11; 95% CI 1.61–2.77]); drug use (physical abuse [OR = 1.92; 95% CI 1.67–2.20], emotional abuse [OR = 1.41; 95% CI 1.11–1.79], and neglect [OR = 1.36; 95% CI 1.21–1.54]); suicide attempts (physical abuse [OR = 3.40; 95% CI 2.17–5.32], emotional abuse [OR = 3.37; 95% CI 2.44–4.67], and neglect [OR = 1.95; 95% CI 1.13–3.37]); and sexually transmitted infections and risky sexual behaviour (physical abuse [OR = 1.78; 95% CI 1.50–2.10], emotional abuse [OR = 1.75; 95% CI 1.49–2.04], and neglect [OR = 1.57; 95% CI 1.39–1.78]). Evidence for causality was assessed using Bradford Hill criteria. While suggestive evidence exists for a relationship between maltreatment and chronic diseases and lifestyle risk factors, more research is required to confirm these relationships.
Conclusions
This overview of the evidence suggests a causal relationship between non-sexual child maltreatment and a range of mental disorders, drug use, suicide attempts, sexually transmitted infections, and risky sexual behaviour. All forms of child maltreatment should be considered important risks to health with a sizeable impact on major contributors to the burden of disease in all parts of the world. The awareness of the serious long-term consequences of child maltreatment should encourage better identification of those at risk and the development of effective interventions to protect children from violence.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Child maltreatment—the abuse and neglect of children—is a global problem. There are four types of child maltreatment—sexual abuse (the involvement of a child in sexual activity that he or she does not understand, is unable to give consent to, or is not developmentally prepared for), physical abuse (the use of physical force that harms the child's health, survival, development, or dignity), emotional abuse (the failure to provide a supportive environment by, for example, verbally threatening the child), and neglect (the failure to provide for all aspects of the child's well-being). Most child maltreatment is perpetrated by parents or parental guardians, many of whom were maltreated themselves as children. Other risk factors for parents abusing their children include poverty, mental health problems, and alcohol and drug misuse. Although there is considerable uncertainty about the frequency and severity of child maltreatment, according to the World Health Organization (WHO) about 20% of women and 5%–10% of men report being sexually abused as children, and the prevalence of physical abuse in childhood may be 25%–50%.
Why Was This Study Done?
Child maltreatment has a large public health impact. Sometimes this impact is immediate and direct (injuries and deaths), but, more often, it is long-term, affecting emotional development and overall health. For child sexual abuse, the relationship between abuse and mental disorders in adult life is well-established. Exposure to other forms of child maltreatment has also been associated with a wide range of psychological and behavioral problems, but the health consequences of physical abuse, emotional abuse, and neglect have not been systematically examined. A better understanding of the long-term health effects of child maltreatment is needed to inform maltreatment prevention strategies and to improve treatment for children who have been abused or neglected. In this systematic review and meta-analysis, the researchers quantify the association between exposure to physical abuse, emotional abuse, and neglect in childhood and mental health and physical health outcomes in later life. A systematic review uses predefined criteria to identify all the research on a given topic; a meta-analysis is a statistical approach that combines the results of several studies.
What Did the Researchers Do and Find?
The researchers identified 124 studies that investigated the relationship between child physical abuse, emotional abuse, or neglect and various health outcomes. Their meta-analysis of data from these studies provides suggestive evidence that child physical abuse, emotional abuse, and neglect are causally linked to mental and physical health outcomes. For example, emotionally abused individuals had a three-fold higher risk of developing a depressive disorder than non-abused individuals (an odds ratio [OR] of 3.06). Physically abused and neglected individuals also had a higher risk of developing a depressive disorder than non-abused individuals (ORs of 1.54 and 2.11, respectively). Other mental health disorders associated with child physical abuse, emotional abuse, or neglect included anxiety disorders, drug abuse, and suicidal behavior. Individuals who had been non-sexually maltreated as children also had a higher risk of sexually transmitted diseases and/or risky sexual behavior than non-maltreated individuals. Finally, there was weak and inconsistent evidence that child maltreatment increased the risk of chronic diseases and lifestyle risk factors such as smoking.
What Do These Findings Mean?
By providing suggestive evidence of a causal link between non-sexual child maltreatment and mental health disorders, drug use, suicide attempts, and sexually transmitted diseases and risky sexual behavior, these findings contribute to our understanding of the non-injury health impacts of child maltreatment. Although most of the studies included in the meta-analysis were undertaken in high-income countries, the findings suggest that this link occurs in both high- and low-to-middle-income countries. They also suggest that neglect may be as harmful as physical and emotional abuse. However, they need to be interpreted carefully because of the limitations of this meta-analysis, which include the possibility that children who have been abused may share other, unrecognized factors that are actually the cause of their later mental health problems. Importantly, this confirmation that physical abuse, emotional abuse, and neglect in childhood are important risk factors for a range of health problems draws attention to the need to develop evidence-based strategies for preventing child maltreatment both to reduce childhood suffering and to alleviate an important risk factor for later health problems.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001349.
The World Health Organization provides information on child maltreatment and its prevention (in several languages); Preventing Child Maltreatment: A Guide to Taking Action and Generating Evidence is a 2006 report produced by WHO and the International Society for Prevention of Child Abuse and Neglect
The US Centers for Disease Control and Prevention provides information on child maltreatment and links to additional resources
The National Society for the Prevention of Cruelty to Children (NSPCC) is a not-for-profit organization that aims to end all cruelty to children in the UK; Childline is a resource provided by the NSPCC that provides help, information, and support to children who are being abused
The Hideout is a UK-based website that helps children and young people understand domestic abuse
Childhelp is a US not-for-profit organization dedicated to helping victims of child abuse and neglect; its website includes a selection of personal stories about child maltreatment
doi:10.1371/journal.pmed.1001349
PMCID: PMC3507962  PMID: 23209385
12.  Causes of New Cases of Major Thalassemia in Sistan and Balouchistan Province in South-East of Iran 
Iranian Journal of Public Health  2012;41(11):67-71.
Background
Thalassemia is the most common monogenic disease in South-East of Iran. Despite the 70% reduction in Iranian thalassemia cases after thalassemia control comprehensive program, 601 affected babies were born in Sistan and Balouchistan Province, Iran from 2002 to 2010, so this study aims at investigating the causes of new thalassemia cases.
Methods:
Data from this retrospective cross-sectional study was collected through interviews and information in the patients’ hospital records.
Results:
Data revealed that 52.4% of fathers and 78.4% of mothers of thalassemic children had elementary education or less. In addition, 78.6% of the couples did not undergo premarital screening for thalassemia and 71.2% of the couples were not notified of their own minor thalassemia until a child was born with major thalassemia. Of the diagnosed minor couples, about 25% did PND and the others did not carry out because mothers were unaware of proper gestational age and of the importance of this issue, financial problems, and the husbands’ disagreement to take the tests. Moreover, 16 mothers, in spite of being diagnosed of having a major fetus, refused to terminate the pregnancy.
Conclusion:
The most preventable causes for affected births include couples’ unawareness of being minor and unawares of the PND importance and process.
PMCID: PMC3521888  PMID: 23304678
Thalassemia; Prevention; Prenatal diagnosis; Premarital screening; Iran
13.  Social-Emotional Problems in Preschool-Aged Children 
Objectives
To estimate the prevalence of positive screens for social-emotional problems among preschool-aged children in a low-income clinical population and to explore the family context and receptivity to referrals to help guide development of interventions.
Design
Observational, cross-sectional study.
Setting
Two urban primary care clinics.
Participants
A total of 254 parents of 3- and 4-year-old children at 2 urban primary care clinics.
Main Outcome Measures
Score on a standardized screen for social-emotional problems (Ages and Stages Questionnaire: Social-Emotional) and answers to additional survey questions about child care arrangements, parental depressive symptoms, and attitudes toward preschool and behavioral health referrals.
Results
Twenty-four percent (95% CI, 16.5%-31.5%) of children screened positive for social-emotional problems. Among those screening positive, 45% had a parent with depressive symptoms, and 27% had no nonparental child care. Among parents of children who screened positive for social-emotional problems, 79% reported they would welcome or would not mind a referral to a counselor or psychologist; only 16% reported a prior referral.
Conclusions
In a clinical sample, 1 in 4 low-income preschool-aged children screened positive for social-emotional problems, and most parents were amenable to referrals to preschool or early childhood mental health. This represents an opportunity for improvement in primary prevention and early intervention for social-emotional problems.
doi:10.1001/archpediatrics.2012.793
PMCID: PMC3578344  PMID: 22926145
14.  Improving mental health of adolescents with Type 1 diabetes: protocol for a randomized controlled trial of the Nothing Ventured Nothing Gained online adolescent and parenting support intervention 
BMC Public Health  2013;13:1185.
Background
Management of Type 1 diabetes comes with substantial personal and psychological demands particularly during adolescence, placing young people at significant risk for mental health problems. Supportive parenting can mitigate these risks, however the challenges associated with parenting a child with a chronic illness can interfere with a parent’s capacity to parent effectively. Interventions that provide support for both the adolescent and their parents are needed to prevent mental health problems in adolescents; to support positive parent-adolescent relationships; and to empower young people to better self-manage their illness. This paper presents the research protocol for a study evaluating the efficacy of the Nothing Ventured Nothing Gained online adolescent and parenting intervention which aims to improve the mental health outcomes of adolescents with Type 1 diabetes.
Method/Design
A randomized controlled trial using repeated measures with two arms (intervention and wait-list control) will be used to evaluate the efficacy and acceptability of the online intervention. Approximately 120 adolescents with Type 1 diabetes, aged 13–18 years and one of their parents/guardians will be recruited from pediatric diabetes clinics across Victoria, Australia. Participants will be randomized to receive the intervention immediately or to wait 6 months before accessing the intervention. Adolescent, parent and family outcomes will be assessed via self-report questionnaires at three time points (baseline, 6 weeks and 6 months). The primary outcome is improved adolescent mental health (depression and anxiety). Secondary outcomes include adolescent behavioral (diabetes self-management and risk taking behavior), psychosocial (diabetes relevant quality of life, parent reported child well-being, self-efficacy, resilience, and perceived illness benefits and burdens); metabolic (HbA1c) outcomes; parent psychosocial outcomes (negative affect and fatigue, self-efficacy, and parent experience of child illness); and family outcomes (parent and adolescent reported parent-adolescent communication, responsibility for diabetes care, diabetes related conflict). Process variables including recruitment, retention, intervention completion and intervention satisfaction will also be assessed.
Discussion
The results of this study will provide valuable information about the efficacy, acceptability and therefore the viability of delivering online interventions to families affected by chronic illnesses such as Type 1 diabetes.
Trial registration
Australian New Zealand clinical trials registry (ANZCTR); ACTRN12610000170022
doi:10.1186/1471-2458-13-1185
PMCID: PMC3878581  PMID: 24341465
Diabetes; Mental health; Parenting; Adolescents; Online intervention
15.  Assessment of psychosocial functioning and its risk factors in children with pectus excavatum 
Background
Psychosocial functioning is poor in patients with pectus excavatum (PE). However, a comprehensive understanding of this issue does not exist. The aim of this study was to assess the severity of psychosocial problems as associated with PE, as well as to identify its risk factors.
Methods
A comparative study was performed at the Sichuan Academy of Medical Sciences/Sichuan Provincial People's Hospital in Chengdu, China. Patients age 6 to 16 who admitted to the outpatient department for the evaluation or treatment for PE were included in the study. In addition to parental reports of child psychosocial problems on the Achenbach Child Behavior Checklist (CBCL), parents also filled in other structured questionnaires, including socio-demographic variables, patients' medical and psychological characteristics. The severity of malformation was assessed by CT scan. For comparison, an age- and gender- matched control group was recruited from the general population. The socio-demographic and scores on CBCL were compared between patients and control subjects. Univariate and multivariate analysis were performed to examine risk factors for psychosocial problems in patients.
Results
No statistically significant differences were found with respect to social-demographic variables between children with PE and control subjects. Compared with control subjects, children with PE displayed higher prevalence of psychosocial problems in the different scales of the CBCL questionnaire such as 'withdraw', 'anxious-depressed', 'social problems' and 'total problems'. Both univariate and multivariate analyses suggested that age, severity of malformation, and being teased about PE were significantly associated with patients' psychosocial problems.
Conclusions
The information derived from this study supports the opinion that children with PE have more psychosocial problems than children from the general population. Multiple medical and psychosocial factors were associated with patients' impairment of psychosocial functioning.
doi:10.1186/1477-7525-9-28
PMCID: PMC3098203  PMID: 21542911
16.  Perceived HIV stigma among children in a high HIV-prevalence area in central China: Beyond the parental HIV-related illness and death 
AIDS care  2010;22(5):545-555.
Objectives
(1) examine the psychometric properties of two parallel measures of HIV-related stigma (i.e., perceived public stigma and children’s personal stigma against PLWHA) among these children; (2) examine whether expressions of stigma measures differ by child’s sex, developmental stage, family SES, or orphanhood status (i.e., AIDS orphans, vulnerable children, and comparison children); and (3) examine the association between HIV-related stigma and children’s psychosocial adjustments among these children.
Methods
Cross-sectional data were collected from 755 AIDS orphans (children who had lost one or both their parents to AIDS), 466 vulnerable children who lived with HIV-infected parents, and 404 comparison children who did not experience HIV-related illness and death in their families. The measures included perceived public stigma, personal stigma, depressive symptoms, loneliness, self-esteem, future expectations, hopefulness about the future, and perceived control over the future.
Results
Both stigma scales were positively associated with psychopathological symptoms (e.g., depression, loneliness) and negatively associated with psychosocial wellbeing (e.g., self-stigma, positive future expectation, hopefulness about future, and perceived control over the future). Both stigma measures contribute to children’s psychosocial problems independent of their orphanhood status and other key demographic factors.
Conclusion
Community-wide stigma reduction and psychological support should be part of the care efforts for children affected by AIDS. Stigma reduction efforts should not only target the stigma against PLWHA but also possible stigma against the entire community (e.g., villages) with a high prevalence of HIV/AIDS. The stigma reduction efforts also needs to be appropriate for children’s age, gender, family SES and AIDS experience in the family. Future research should explore individual and contextual factors such as social support, coping and attachment in mitigating the negative effect of stigma among these children.
doi:10.1080/09540120903253999
PMCID: PMC2943535  PMID: 20397077
17.  Motives for choosing growth-enhancing hormone treatment in adolescents with idiopathic short stature: a questionnaire and structured interview study 
BMC Pediatrics  2005;5:15.
Background
Growth-enhancing hormone treatment is considered a possible intervention in short but otherwise healthy adolescents. Although height gain is an obvious measure for evaluating hormone treatment, this may not be the ultimate goal for the person, but rather a means to reach other goals such as the amelioration of current height-related psychosocial problems or the enhancement of future prospects in life and society. The aim of our study was to clarify the motives of adolescents and their parents when choosing to participate in a growth-enhancing trial combining growth hormone and puberty-delaying hormone treatment.
Methods
Participants were early pubertal adolescents (25 girls, 13 boys) aged from 11 to 13 years (mean age 11.5 years) with a height standard deviation score (SDS) ranging from -1.03 to -3.43. All had been classified as idiopathic short stature or persistent short stature born small for the gestational age (intrauterine growth retardation) on the basis of a height SDS below -2, or had a height SDS between -1 and -2 and a predicted adult height SDS below -2. The adolescents and their parents completed questionnaires and a structured interview on the presence of height-related stressors, parental worries about their child's behavior and future prospects, problems in psychosocial functioning, and treatment expectations. Questionnaire scores were compared to norms of the general Dutch population.
Results
The adolescents reported normal psychosocial functioning and highly positive expectations of the treatment in terms of height gain, whereas the parents reported that their children encountered some behavioral problems (being anxious/depressed, and social and attention problems) and height-related stressors (being teased and juvenilized). About 40% of the parents were worried about their children's future prospects for finding a spouse or job. The motives of the adolescents and their parents exhibited rather different profiles. The most prevalent parental worries related to the current or future functioning of their children, while a few cases were characterized by no observed motives or by psychosocial problems only reported by the adolescents themselves.
Conclusion
The motives for participating in a growth-enhancing hormone trial are more obvious in the parents than in the adolescents themselves. Two out of three parents report worries about the future opportunities or observe modest current psychosocial problems in their children. The adolescents want to gain height, but the motivation underlying this remains unclear. Few of the adolescents experience psychosocial problems. Our analyses revealed differences among individuals in terms of motives, which implies that in an evaluation of hormone treatment, the importance of divergent outcome variables will also differ among individuals. Effectiveness evaluations of hormone treatment to increase height and the consequential fulfillment of other goals must be awaited.
doi:10.1186/1471-2431-5-15
PMCID: PMC1177961  PMID: 15943869
18.  Prevalence and socio-demographic correlates of stunting and thinness among Pakistani primary school children 
BMC Public Health  2011;11:790.
Background
Child growth is internationally recognized as an important indicator of nutritional status and health in populations. Child under-nutrition is estimated to be the largest contributor to global burden of disease, and it clusters in South Asia but literature on under-nutrition among school-aged children is difficult to find in this region. The study aimed to assess the prevalence and socio-demographic correlates of stunting and thinness among Pakistani primary school children.
Methods
A population-based cross-sectional study was conducted with a representative multistage cluster sample of 1860 children aged 5-12 years in Lahore, Pakistan. Stunting (< -2 SD of height-for-age z-score) and thinness (< -2 SD of BMI-for-age z-score) were defined using the World Health Organization reference 2007. Chi-square test was used as the test of trend. Logistic regression was used to quantify the independent predictors of stunting and thinness and adjusted odds ratios (aOR) with 95% confidence interval (CI) were obtained. Linear regression was used to explore the independent determinants of height- and BMI-for-age z-scores. Statistical significance was considered at P < 0.05.
Results
Eight percent (95% CI 6.9-9.4) children were stunted and 10% (95% CI 8.7-11.5) children were thin. Stunting and thinness were not significantly associated with gender. Prevalence of stunting significantly increased with age among both boys and girls (both P < 0.001) while thinness showed significant increasing trend with age among boys only (P = 0.034). Significant correlates of stunting included age > 8 years, rural area and urban area with low SES, low-income neighborhoods, lower parental education, more siblings, crowded housing and smoking in living place (all P < 0.001). Significant correlates of thinness included rural area and urban area with low SES, low-income neighborhoods and lower parental education (all P < 0.001), and age > 10 years (P = 0.003), more siblings (P = 0.016) and crowded housing (P = 0.006). In multivariate logistic regression analyses adjusted simultaneously for all factors, older age (aOR 3.60, 95% CI 1.89-6.88), urban area with low SES (aOR 2.58, 95% CI 1.15-5.81) and low-income neighborhoods (aOR 4.62, 95% CI 1.63-13.10) were associated with stunting while urban area with low SES (aOR 2.28, 95% CI 1.21-4.30) was associated with thinness. In linear regression analyses adjusted for all factors, low-income neighborhoods and older age were associated with lower height-for-age z-score while rural area with low/disadvantaged SES was associated with lower BMI-for-age z-score.
Conclusions
Relatively low prevalence of stunting and thinness depicted an improvement in the nutritional status of school-aged children in Pakistan. However, the inequities between the poorest and the richest population groups were marked with significantly higher prevalence of stunting and thinness among the rural and the urban poor, the least educated, the residents of low-income neighborhoods and those having crowded houses. An increasing trend with age was observed in prevalence of stunting and thinness. Smoking in living place was associated with stunting. Findings suggest the need to implement evidence-based child health policy and strategies, prioritizing the poor and socially disadvantaged population.
doi:10.1186/1471-2458-11-790
PMCID: PMC3209698  PMID: 21988799
19.  Psychological morbidity among suicide-bereaved and non-bereaved parents: a nationwide population survey 
BMJ Open  2013;3(8):e003108.
Objective
To determine how psychological premorbidity affects the risk of depression in parents who lost a child through suicide.
Design
Population-based survey.
Setting
Sweden, between 2009 and 2010.
Participants
All parents who lost a child, age 15–30, through suicide between 2004 and 2007 according to National population registries. Non-bereaved parents matched for age, sex, living area, marital status, number of children. Exclusion criteria: born outside a Nordic country, not Swedish speaking, contact details missing. Participants: 666 of 915 (73%) suicide-bereaved and 377 of 508 (74%) non-bereaved parents.
Main outcome measures
Depression measured by the nine-item depression scale of the Patient Health Questionnaire (PHQ-9) and study-specific questions to assess psychological premorbidity and experience of the child's presuicidal morbidity.
Results
In all, 94 (14%) suicide-bereaved and 51 (14%) non-bereaved parents (relative risk 1.0; 95% CI 0.8 to 1.4) had received their first treatment for psychological problems or had been given a psychiatric diagnosis more than 10 years earlier. The prevalence of moderate-to-severe depression was 115 (18%) in suicide-bereaved versus 28 (7%) in non-bereaved parents (RR 2.3; 95% CI 1.6 to 3.5). For those without psychological premorbidity, the relative risk was 2.3 (95% CI 1.4 to 3.6). 339 (51%) suicide-bereaved parents expressed worry over the child's psychological health during the month preceding the suicide and 259 (39%) had anticipated the suicide.
Conclusions
In parents who lost a child through suicide in Sweden we did not find a higher prevalence of long-term psychological premorbidity than among parents who had not lost a child; the more than twofold risk of depression among the bereaved can probably be explained by the suicide and the stressful time preceding the suicide.
doi:10.1136/bmjopen-2013-003108
PMCID: PMC3758979  PMID: 23996818
EPIDEMIOLOGY
20.  Assessment of psychosocial variables by parents of youth with type 1 diabetes mellitus 
Purpose
To evaluate the impact of type 1 diabetes (T1D) on family functioning and child-rearing practices from parents’ point of view, to assess parents’ health-related quality of life and to explore the relations between psychosocial variables and diabetes care outcomes in youth with diabetes.
Methods
This research was part of the cross-sectional multicenter Brazilian Type 1 Diabetes Study, conducted between December 2008 and December 2010 in 28 public clinics of 20 cities across four Brazilian geographical regions. Psychosocial questions were addressed to 1,079 parents of patients with T1D through an interview (89.3% mothers, 52.5% Caucasians, 38.6 ± 7.6 years old). Overall, 72.5% of the families were from low or very low socioeconomic levels. Parents were also submitted to health-related quality of life instruments (EQ-5D+EQ-VAS). Clinical data from the last medical appointment were collected by a physician using standardized chart review forms. The demographic, educational and socioeconomic profiles were also obtained and HbA1c levels registered.
Results
Discomfort and anxiety/depression were the main complaints in EQ-5D, and were significantly more frequent in mothers (37.3% and 53.4%, respectively) than in fathers (25.7% and 32.7%, respectively). The mother was the only parent involved in diabetes care in 50.5% of the cases. The majority of parents (78.5%) mentioned changes in family functioning after the diagnosis, although they neither treated their diabetic children differently from the others (76.3%), nor set prohibitions (69.1%) due to diabetes. The majority was worried about diabetes complications (96.4%) and felt overwhelmed by diabetes care (62.8%). Parents report of overwhelming was significantly associated with anxiety/depression, as measured by the EQ-5D questionnaire. Less than half of the patients had already slept over, and the permission to do it increased as a function of children’s age. Nearly half of the parents (52%) admitted to experiencing difficulties in setting limits for their children/adolescents. HbA1c levels in patients from this group (9.7 ± 2.5%) were significantly higher than those of children/adolescents whose parents reported no difficulties towards limit-setting (8.8 ± 2.1%). Parents whose children/adolescents reported the occurrence of hypoglycemic episodes in the last month complained significantly more about anxiety/depression (55.1%) than parents from patients who did not report it (45.7%). Also a significantly greater proportion of parents whose children/adolescents had been hospitalized due to hyperglycemia reported anxiety /depression (58.7%) than those whose children/adolescents had not been hospitalized (49.8%).
Conclusions
After the diagnosis of T1D, the lifestyle of all family members changes, what interferes with their quality of life. Mothers are still the primary caregivers for children/adolescents with diabetes. Difficulty to set limits for children/adolescents may be a risk for poor metabolic control. The study demonstrates the importance of family context in the adjustment of young patients to T1D. The specific needs of T1D patients and their impact on a family routine must be considered for future improvement on therapy elements and strategies.
doi:10.1186/1758-5996-4-48
PMCID: PMC3538713  PMID: 23174044
Type 1 diabetes; Family functioning; Psychosocial variables; Diabetes in youth; Glycemic control
21.  Health-related quality of life in girls and boys with juvenile idiopathic arthritis: self- and parental reports in a cross-sectional study 
Background
Juvenile Idiopathic Arthritis (JIA) affects children and adolescents with both short-term and long-term disability. These children also report lower health-related quality of life (HRQOL) compared to their healthy peers. However, there seems to be some discrepancies between self- and parent-reports, and gender differences need to be further studied. This study aims to describe HRQOL in girls and boys with JIA, and to explore gender differences in self-reports compared to parent-reports of HRQOL in children with JIA.
Methods
Fifty-three children and adolescents with JIA (70% girls and 30% boys) with a median age of 14 years (8–18 years), and their parents, participated in this cross-sectional study in Sweden. Data was systematically collected prior to ordinary visits at a Pediatric outpatient clinic, during a period of 16 months (2009–2010). Disability was assessed with the Childhood Health Assessment Questionnaire (CHAQ), and disease activity by physicians’ assessments and Erythrocyte Sedimentation Rate (ESR). The Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL) was used to assess self- and parent-reports of HRQOL in the child.
Results
In this sample of children with generally low disease activity and mild to moderate disability, more than half of the children experienced suboptimal HRQOL, equally in girls and boys. Significant differences between self- and parent-reports of child HRQOL were most evident among girls, with lower parent-reports regarding the girl’s physical- and psychosocial health as well as in the total HRQOL score. Except for the social functioning subscale, where parents’ reports were higher compared to their sons, there were no significant differences between boys- and parent-reports.
Conclusions
More than half of the girls and boys experienced suboptimal HRQOL in this sample, with no gender differences. However, there were differences between self- and parent-reports of child HRQOL, with most significant differences found among the girls. Thus, differences between self- and parent-reports of child HRQOL must be taken into account in clinical settings, especially among girls with JIA.
doi:10.1186/1546-0096-10-33
PMCID: PMC3523024  PMID: 22985358
Adolescent; Child; Gender; Parents; Pediatrics; Questionnaire
22.  Waist circumference, waist-hip ratio and waist-height ratio percentiles and central obesity among Pakistani children aged five to twelve years 
BMC Pediatrics  2011;11:105.
Background
Central obesity has been associated with the risk of cardiovascular and metabolic disease in children and anthropometric indices predictive of central obesity include waist circumference (WC), waist-hip ratio (WHR) and waist-height ratio (WHtR). South Asian children have higher body fat distribution in the trunk region but the literature regarding WC and related indices is scarce in this region. The study was aimed to provide age- and gender-specific WC, WHR and WHtR smoothed percentiles, and to explore prevalence and correlates of central obesity, among Pakistani children aged five to twelve years.
Methods
A population-based cross-sectional study was conducted with a representative multistage random cluster sample of 1860 primary school children aged five to twelve years in Lahore, Pakistan. Smoothed percentile curves were constructed for WC, WHR and WHtR by the LMS method. Central obesity was defined as having both age- and gender-specific WC percentile ≥90th and WHtR ≥0.5. Chi-square test was used as the test of trend. Multivariate logistic regression was used to quantify the independent predictors of central obesity and adjusted odds ratios (aOR) with 95% CI were obtained. Linear regression was used to explore the independent determinants of WC and WHtR. Statistical significance was considered at P < 0.05.
Results
First ever age- and gender-specific smoothed WC, WHR and WHtR reference curves for Pakistani children aged five to twelve years are presented. WC increased with age among both boys and girls. Fiftieth WC percentile curves for Pakistani children were higher as compared to those for Hong Kong and British children, and were lower as compared to those for Iranian, German and Swiss children. WHR showed a plateau pattern among boys while plateau among girls until nine years of age and decreased afterwards. WHtR was age-independent among both boys and girls, and WHtR cut-off of ≥0.5 for defining central obesity corresponded to 85th WHtR percentile irrespective of age and gender. Twelve percent children (95% CI 10.1-13.0) had a WC ≥90th percentile and 16.5% children (95% CI 14.7-18.1) had a WHtR ≥0.5 while 11% children (95% CI 8.9-11.6) had both WC ≥90th percentile and WHtR ≥0.5. Significant predictors of central obesity included higher grade, urban area with high socioeconomic status (SES), high-income neighborhood and higher parental education. Children studying in higher grade (aOR 5.11, 95% CI 1.76-14.85) and those living in urban area with high SES (aOR 82.34, 95% CI 15.76-430.31) showed a significant independent association. Urban area with high SES and higher parental education showed a significant independent association with higher WC and higher WHtR while higher grade showed a significant independent association with higher WC.
Conclusions
Comprehensive worldwide reference values are needed to define central obesity and the present study is the first one to report anthropometric indices predictive of central obesity for Pakistani school-aged children. Eleven percent children were centrally obese and strong predictors included higher grade, urban area with high SES and higher parental education. These findings support the need for developing a National strategy for childhood obesity and implementing targeted interventions, prioritizing the higher social class and involving communities.
doi:10.1186/1471-2431-11-105
PMCID: PMC3239239  PMID: 22104025
23.  Parental Smoking and Education as Determinants of Overweight in Israeli Children 
Preventing Chronic Disease  2006;3(2):A48.
Introduction
Obesity is a well-recognized risk factor for many chronic diseases. Pediatric overweight is an especially severe problem because its childhood onset increases the overall length of exposure to the detrimental effects of overweight, accelerates the onset of chronic disease, and affects children's physical, psychological, and social development. Several parental traits have been shown to be associated with an increased risk for childhood overweight. In our study, we quantified the mutual effects of parental education and smoking on the risk of filial overweight in a large population-based sample of Israeli schoolchildren, adjusting for the effects of age, sex, and immigration status.
Methods
Data were collected in 1997 and 2000 from 8623 Israeli schoolchildren aged 8 to 13 years in two cross-sectional samples. Overweight was defined as body mass index (BMI) of greater than the 85th percentile for age and sex, and severe overweight was defined as BMI greater than the 95th percentile for age and sex.
Results
Mean BMI was positively associated with number of parental smokers for a child. Parental smoking was an independent risk factor for both overweight and severe overweight, with a dose–response relationship between the number of parental smokers and the risk of filial overweight. Children whose parents did not attend college were at increased risk for overweight (odds ratio [OR], 1.21; 95% confidence interval [CI], 1.03–1.42) and severe overweight (OR, 1.49; 95% CI, 1.09–2.05) compared with children whose parents both attended college. Children with one college-educated parent were at increased risk for severe overweight (OR, 1.31; 95% CI, 1.004–1.71) compared with children whose parents both attended college.
Conclusion
Parental education and smoking are independent risk factors for filial overweight. Children of less-educated, smoking parents should be targeted for overweight prevention and intervention efforts. These findings should also be included as key messages in adult smoking prevention and cessation campaigns. Parents who smoke should be warned that not only is their own health at stake, but their children are also at increased risk for overweight and its associated diseases.
PMCID: PMC1563963  PMID: 16539789
24.  Moroccan parents caring for children with juvenile idiopathic arthritis: positive and negative aspects of their experiences 
Background
Juvenile idiopathic arthritis (JIA) can lead to serious disability in children and adolescents, requiring intensive home care usually provided by parents .These parents must also cope with physical, familial, social and financial constraints.
The aim of this study is to evaluate the positive and negative impacts of caregiving on parents to children with JIA, and identify diseases-related variables that affect these outcomes.
Methods
Cross-sectional study including 47 patients diagnosed with JIA defined by the International League of association for Rheumatology (ILAR) 2001 classification. Socio-demographic, clinical and biological data related to patient and disease were collected. Positive and negative effects of caregiving on parents of children with JIA were assessed via a validated instrument; the Caregiver Reaction Assessment (CRA).The CRA assesses parent’s self-esteem, financial problems, health problems, disrupted schedule and lack of family support. All parents completed the CRA questionnaire. A statistical analysis was conducted to determine the influence of disease-related variables on caregivers.
Results
Forty-seven patients were included with 40.4% female. The average patient age was 11 years, and a mean patient body mass index (BMI) was 18. Forty patients were in school. Median disease duration of JIA was 4 years. The most frequent arthritis subtype was persistent oligoarthritis in 12-patients. Nearly 15% had extra-articular manifestations most frequently ocular involvement (6.4%). Median of global Visual analogic scale (VAS) was 20 and median Child health assessment questionnaire (CHAQ) was 0. The primary caregiver was the mother for all patients. Mean maternal age was 38 years, 42% of mothers were illiterate, and nearly all (95%) were without employment. The mean values of different dimensions of the CRA were respectively: self-esteem 3.5, financial problems 3.7, health problem 2.4, disrupted schedule 3.6 and familial support 2.9. Disrupted schedule of parents was correlated with disease severity assessed by physician VAS (p = 0.02). Financial problems of parents were significantly associated with disease duration (p = 0.04). There was no significant association between the type of JIA, activity or severity of the disease and other dimensions of the CRA.
Conclusion
This study suggests that the management of children with JIA has a high negative impact among caregiving parents, represented mainly by the disruption of their activities, the lack of family support, financial problems and health problems. However, caregiving often also improves caregiver’s self-esteem (feeling of gratification to be helping).
doi:10.1186/1546-0096-11-39
PMCID: PMC3854764  PMID: 24138932
Juvenile idiopathic Arthritis; Caregiver; CRA; Burden; Care at home
25.  Health-Related Quality of Life in Children and Adolescents with Sickle Cell Disease 
Objective
To assess health-related quality of life (HRQOL) in children and adolescents with sickle cell disease (SCD).
Design, Setting, and Participants
The PedsQL™ 4.0 Generic Scales, a multidimensional self-report instrument that has been shown to be valid and reliable for use in children and adolescents with chronic illness, consists of 23 items that assess physical, emotional, social, and school functioning. Questionnaires were administered to 124 children and adolescents (aged 8-18 years, child self-report) with SCD (100 sickle cell anemia [SS], 24 sickle beta zero thalassemia [Sβ0thal]) and their parents (parent-proxy report). Summary scores for children’s and parents’ ratings of overall HRQOL and psychosocial health and subscale scores for physical, emotional, social, and school functioning were compared to published data for healthy children. Both summary and subscale scores for children with SCD were also compared to those of their parents.
Results
Children with SCD and their parents rated overall HRQOL and all sub-domains of HRQOL lower than ratings of healthy children and their parents (p < .001). Children with SCD rated their own HRQOL significantly better than their parents for overall HRQOL and all sub-domains (p <.001) except emotional functioning (p = .06).
Conclusions
Children with SCD and their parents perceived overall HRQOL and all HRQOL sub-domains to be lower than scores reported in healthy children. Therefore, successful therapeutic efforts to improve HRQOL could represent important advances in the health of children with SCD.
doi:10.1016/j.pedhc.2009.12.006
PMCID: PMC3124665  PMID: 21700135
Quality of Life; Health Related Quality of Life; Sickle Cell Disease; Chronic Illness; Children and Adolescents

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