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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.  Investigating the mental health and coping strategies of parents with major thalassemic children in Bandar Abbas 
Introduction:
Major thalassemia is a hereditary, chronic blood disease caused by the synthesis deficiency of one or more polypeptide chains of globin during childhood. This leads to the rise of blood pressure and family tensions. Therefore, the coping strategies of the family could seriously affect and facilitate the thalassemic child's healthy growth. The present research sought to investigate the mental health and coping strategies of families with major thalassemic children in Bandar Abbas in 2013.
Materials and Methods:
This study is of a descriptive-analytical and cross-sectional type. Research population consisted of 140 parents of major thalassemic children who visited Shahid Mohammadi Hospital of Bandar Abbas. The instruments used were the 12-item General Health Questionnaire of Goldberg and Williams along with the coping strategies questionnaire. Nonprobabilistic, convenient sampling method was used. To analyze the data, Spearman's correlation coefficient, Chi-square and descriptive statistical tests were used. The significance level was set at P < 0.05.
Results:
Data analysis showed that parents’ mental health (32 ± 4.25) along with their coping strategy scores (45 ± 7.50) was about the average. The most prevalent coping strategies among the parents were represented as: “I trust in God in order to get my problems solved” (87%), “to get mentally and spiritually relieved, I would visit mosques and holy shrines” (53%), and “to overcome problems, I make harder attempts” (50.7%). A significant correlation was found between the parents’ coping strategies and general health (P < 0.001). A significant correlation was also observed between mother's educational level (P = 0.044), age (P = 0.022) and general health.
Discussion and Conclusion:
According to the results of this research, it is categorical for the ministry of health and medical education and those in charge to pay special and adequate attention to the social, spiritual, and mental health of these children and their families.
doi:10.4103/2277-9531.162375
PMCID: PMC4579777  PMID: 26430686
Children; mental health; parents’ coping strategies; thalassemia
3.  Psychological Aspects in Children and Adolescents With Major Thalassemia: A Case-Control Study 
Iranian Journal of Pediatrics  2015;25(3):e322.
Background:
Thalassemia is an inherited blood disease. It is a serious public health problem throughout the Mediterranean region, the Middle East and the Indian subcontinent, as well as in Southeast Asia.
Objectives:
Thalassemia is an inherited blood disease. It is a serious public health problem. In this study we assessed psychological aspects in Iranian children and adolescents with thalassemia major.
Patients and Methods:
In this case-control study sixty healthy subjects aged 7-18 years and Sixty Patients with confirmed diagnosis of major thalassemia were enrolled. After obtaining informed consent from parents of all participating thalassemia patients and healthycontrols, we assessed psychological aspects and quality of life by Pediatric Quality of LifeTM (PedsQL™), Strengths and Difficulties Questionnaires (SDQ), State and Trait Anxiety, Children's Depression Inventory (CDI).
Results:
The results of this study indicate that there are significant changes in depression, anxiety, QOL and behavioral screening between children with thalassemia major compared with healthy subjects by means of both parents and children reports. According to the results, children with thalassemia major have more psychological problems than healthy ones. Patients with thalassemia have a lower QOL than their peers (P = 0.001), the rate of depression is higher in this group (P = 0.015), Also behavioral problems in these children are more than healthy subjects (P = 0.009).
Conclusions:
We recommend appropriate treatment and counseling procedures in addition to specific treatment of thalassemia. According to the results we suggest to establish pediatric psychiatric clinics beside thalassemic clinics to cure psychological aspects of the disease.
doi:10.5812/ijp.25(3)2015.322
PMCID: PMC4505986  PMID: 26199704
Adolescents; Children; Quality of Life; Thalassemia Major
4.  Psychosocial implications of blindness and low vision in students of a school for children with blindness 
Objective:
To find out the psychosocial implications of blindness and low vision in students of blind school Bahawalpur.
Methods:
A cross sectional descriptive study was carried out in Higher Secondary School for blind, Bahawalpur after getting approval from Institutional review board of Quaid-e-Azam Medical College, Bahawalpur and Principal of Blind School, Bahawalpur. Forty willing students filled a customized questionnaire, consisting of questions about logistic variables and questions regarding areas of satisfaction. Statistical analysis was performed using SPSS version 18.
Results:
Out of 40, 55% (22/40) of them were found depressed (as assessed through DSM-lV), 50% (20/40) were having difficulty in making new contact but 52.5% (21/40) were satisfied with family care.
Conclusion:
Sixty percent (24/40) of blind school children experienced difficulty in their life. This study showed that blindness or low vision does have psychological implications like feeling of guilt, anxiety, sadness & depression.
doi:10.12669/pjms.322.8737
PMCID: PMC4859038  PMID: 27182255
Psychosocial adjustment; Individual differences; Visual impairment & blindness
5.  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
6.  Health-related quality of life and depression among medical sales representatives in Pakistan 
SpringerPlus  2016;5(1):1048.
Pharmaceutical companies have been known to pose stress and mental harassment on medical sales representatives (MSRs) in-order to increase pharmaceutical sales. This cross sectional descriptive study, conducted during November and December 2014 in the Lahore and Bahawalpur districts of Punjab, Pakistan, evaluates the Health-Related Quality of Life (HRQoL) and extent of depression among MSRs in Pakistan. The significant predictors of HRQoL and depression among the MSRs were also determined. Using a convenience sampling technique, all consenting MSRs (N = 318) of pharmaceutical companies were asked to self-complete the Short Form-36 (SF-36v2) Health Survey and Stanford Personal Health Questionnaire (PHQ-8). The standard scoring scheme for the SF36v2 and PHQ-8 questionnaires was used. The PHQ-8 scores showed that 16.4 % (n = 52) and 2.5 % of respondents were suffering from major depression and severe major depression, respectively. Being depressed and having difficulty in achieving sales targets were the factors independently associated with lower physical health. Similarly, depression, insufficient time for the family and monthly income less than 36,000 Pakistan Rupees were significant predictors of lower mental health. The factors associated with depression included insufficient time for the family and unsatisfactory behavior of the managers. Compromised mental health and the prevalence of depression among the MSRs suggest pharmaceutical companies need to devise health management strategies and interventions to ensure effective prevention and management of mental health problems among Pakistani MSRs.
Electronic supplementary material
The online version of this article (doi:10.1186/s40064-016-2716-1) contains supplementary material, which is available to authorized users.
doi:10.1186/s40064-016-2716-1
PMCID: PMC4940353  PMID: 27462496
7.  Life Satisfaction in children and adolescents with beta thalassemia major in southwest Iran 
Electronic Physician  2014;6(1):759-767.
Background:
Beta thalassemia major has a considerable impact on quality of life. The purpose of this study was to determine the life satisfaction of beta-thalassemic children and adolescents compared to healthy controls.
Methods:
This research, conducted in 2009, was a controlled, cross-sectional study in which beta-thalassemic patients, who were being followed-up by the Thalassemic Center in Bushehr, a city in southern Iran, were compared with a healthy control group. The Multi-dimensional Student Life Satisfaction Scale (MSLSS) was used to measure the participants’ quality of life in five domains. The chi-squared test, t-test, Pearson’s Product Moment Correlation, and multiple regression analysis were used for the statistical analyses.
Results:
The unadjusted mean scores of three of the domains, i.e., school, friends, and living environment, and the total score of five domains, i.e., school, friends, living environment, family, and self, were significantly higher in thalassemic patients than in the control group (P < 0.05). These significant differences were persistent after adjusting the mean scores of the three domains and the total score of the five domains for age, gender, and educational level.
Conclusion:
The thalassemic patients were more satisfied with life than the healthy controls in Bushehr. Many factors may be responsible for this finding. The results of this study suggest that the attitude of parents and society concerning assigning responsibility to patients should be assessed. The assessment should include comparing the satisfaction with life of thalassemic patients with that of their healthy siblings and conducting national studies on the quality of life of thalassemic patients and their satisfaction with life.
doi:10.14661/2014.759-767
PMCID: PMC4324286  PMID: 25763142
β-thalassemia; multi-dimensional student life satisfaction scale (MSLSS); personal satisfaction; quality of life
8.  Mortality after Parental Death in Childhood: A Nationwide Cohort Study from Three Nordic Countries 
PLoS Medicine  2014;11(7):e1001679.
Jiong Li and colleagues examine mortality rates in children who lost a parent before 18 years old compared with those who did not using population-based data from Denmark, Sweden, and Finland.
Please see later in the article for the Editors' Summary
Background
Bereavement by spousal death and child death in adulthood has been shown to lead to an increased risk of mortality. Maternal death in infancy or parental death in early childhood may have an impact on mortality but evidence has been limited to short-term or selected causes of death. Little is known about long-term or cause-specific mortality after parental death in childhood.
Methods and Findings
This cohort study included all persons born in Denmark from 1968 to 2008 (n = 2,789,807) and in Sweden from 1973 to 2006 (n = 3,380,301), and a random sample of 89.3% of all born in Finland from 1987 to 2007 (n = 1,131,905). A total of 189,094 persons were included in the exposed cohort when they lost a parent before 18 years old. Log-linear Poisson regression was used to estimate mortality rate ratio (MRR). Parental death was associated with a 50% increased all-cause mortality (MRR = 1.50, 95% CI 1.43–1.58). The risks were increased for most specific cause groups and the highest MRRs were observed when the cause of child death and the cause of parental death were in the same category. Parental unnatural death was associated with a higher mortality risk (MRR = 1.84, 95% CI 1.71–2.00) than parental natural death (MRR = 1.33, 95% CI 1.24–1.41). The magnitude of the associations varied according to type of death and age at bereavement over different follow-up periods. The main limitation of the study is the lack of data on post-bereavement information on the quality of the parent-child relationship, lifestyles, and common physical environment.
Conclusions
Parental death in childhood or adolescence is associated with increased all-cause mortality into early adulthood. Since an increased mortality reflects both genetic susceptibility and long-term impacts of parental death on health and social well-being, our findings have implications in clinical responses and public health strategies.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
When someone close dies, it is normal to grieve, to mourn the loss of that individual. Initially, people who have lost a loved one often feel numb and disorientated and find it hard to grasp what has happened. Later, people may feel angry or guilty, and may be overwhelmed by feelings of sadness and despair. They may become depressed or anxious and may even feel suicidal. People who are grieving can also have physical reactions to their loss such as sleep problems, changes in appetite, and illness. How long bereavement—the period of grief and mourning after a death—lasts and how badly it affects an individual depends on the relationship between the individual and the deceased person, on whether the death was expected, and on how much support the mourner receives from relatives, friends, and professionals.
Why Was This Study Done?
The loss of a life-partner or of a child is associated with an increased risk of death (mortality), and there is also some evidence that the death of a parent during childhood leads to an increased mortality risk in the short term. However, little is known about the long-term impact on mortality of early parental loss or whether the impact varies with the type of death—a natural death from illness or an unnatural death from external causes such as an accident—or with the specific cause of death. A better understanding of the impact of early bereavement on mortality is needed to ensure that bereaved children receive appropriate health and social support after a parent's death. Here, the researchers undertake a nationwide cohort study in three Nordic countries to investigate long-term and cause-specific mortality after parental death in childhood. A cohort study compares the occurrence of an event (here, death) in a group of individuals who have been exposed to a particular variable (here, early parental loss) with the occurrence of the same event in an unexposed cohort.
What Did the Researchers Do and Find?
The researchers obtained data on everyone born in Denmark from 1968 to 2008 and in Sweden from 1973 to 2006, and on most people born in Finland from 1987 to 2007 (more than 7 million individuals in total) from national registries. They identified 189,094 individuals who had lost a parent between the age of 6 months and 18 years. They then estimated the mortality rate ratio (MRR) associated with parental death during childhood or adolescence by comparing the number of deaths in this exposed cohort (after excluding children who died on the same day as a parent or shortly after from the same cause) and in the unexposed cohort. Compared with the unexposed cohort, the exposed cohort had 50% higher all-cause mortality (MRR = 1.50). The risk of mortality in the exposed cohort was increased for most major categories of cause of death but the highest MRRs were seen when the cause of death in children, adolescents, and young adults during follow-up and the cause of parental death were in the same category. Notably, parental unnatural death was associated with a higher mortality risk (MRR = 1.84) than parental natural death (MRR = 1.33). Finally, the exposed cohort had increased all-cause MRRs well into early adulthood irrespective of child age at parental death, and the magnitude of MRRs differed by child age at parental death and by type of death.
What Do These Findings Mean?
These findings show that in three high-income Nordic countries parental death during childhood and adolescence is associated with an increased risk of all-cause mortality into early adulthood, irrespective of sex and age at bereavement and after accounting for baseline characteristics such as socioeconomic status. Part of this association may be due to “confounding” factors—the people who lost a parent during childhood may have shared other unknown characteristics that increased their risk of death. Because the study was undertaken in high-income countries, these findings are unlikely to be the result of a lack of material or health care needs. Rather, the increased mortality among the exposed group reflects both genetic susceptibility and the long-term impacts of parental death on health and social well-being. Given that increased mortality probably only represents the tip of the iceberg of the adverse effects of early bereavement, these findings highlight the need to provide long-term health and social support to bereaved children.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001679.
The UK National Health Service Choices website provides information about bereavement, including personal stories; it also provides information about children and bereavement and about young people and bereavement, including links to not-for-profit organizations that support children through bereavement
The US National Cancer Institute has detailed information about dealing with bereavement for the public and for health professionals that includes a section on children and grief (in English and Spanish)
The US National Alliance for Grieving Children promotes awareness of the needs of children and teens grieving a death and provides education and resources for anyone who wants to support them
MedlinePlus provides links to other resources about bereavement (in English and Spanish)
doi:10.1371/journal.pmed.1001679
PMCID: PMC4106717  PMID: 25051501
9.  Biochemical Markers of Bone Turnover in Patients with β-Thalassemia Major: A Single Center Study from Southern Pakistan 
Advances in Hematology  2016;2016:5437609.
Objectives. Skeletal complications in β-homozygous thalassemic patients are uncommon but often debilitating, even amongst children and adolescent patients with well maintained transfusion and chelation therapy. The aim is to evaluate the biochemical markers of bone turnover in regularly transfused thalassemic patients and its possible correlations with demographic data and hematological and biochemical markers. Methods. In this prospective cross-sectional study, 36 β-thalassemia major patients were enrolled from March 2012 to March 2014. All patients underwent complete blood counts, LFTs, serum ferritin, serum calcium, phosphorus, serum albumin, alkaline phosphatase, 25-OH vitamin D, and parathormone (PTH) levels. Results. There were 17 males and 19 females with mean age of 12.56 ± 5.9 years. Hypocalcemia and hypophosphatemia were seen in 66.6% and 19.4%, respectively, while 25-OH vitamin D deficiency was present in 72.2% of thalassemic children and adolescents. Hypoparathyroidism was seen in 13.8% while hyperparathyroidism was detected in 8.3% of patients. There was direct correlation between serum phosphorus and ferritin levels (P < 0.05). No correlation was found between indirect bilirubin and skeletal parameters, calcium and parathyroid hormone (P > 0.05). Conclusions. Biochemical profile is significantly altered in patients with β-thalassemia major and bone associated biochemical abnormalities like hypocalcaemia, 25-OH vitamin D deficiency, and hypophosphatemia are not uncommon in Pakistani patients with thalassemia major.
doi:10.1155/2016/5437609
PMCID: PMC4783526  PMID: 27006658
10.  Parents of young people with self-harm or suicidal behaviour who seek help – a psychosocial profile 
Background
Deliberate Self-Harm (DSH) is a common problem among children and adolescents in clinical and community populations, and there is a considerable amount of literature investigating factors associated with DSH risk and the effects of DSH on the child. However, there is a dearth of research examining the impact of DSH on parents, and there are few support programmes targeted at this population. This cross-sectional study examines the profile of a sample of parents of young people with DSH who participated in a support programme (Supporting Parents and Carers of young people with self-harm: the SPACE programme), with the goal of investigating pre-test parental well-being, family communication, parental satisfaction, perceived parental social support, and child strengths and difficulties.
Methods
Participants were 130 parents who attended the SPACE programme between 2009 and 2012, and who completed six questionnaires at baseline: the General Health Questionnaire-12, Strengths and Difficulties Questionnaire, Kansas Parenting Satisfaction Scale, General Functioning Scale of the McMaster Family Assessment Device, Multidimensional Scale of Perceived Social Support, and a demographic questionnaire.
Results
The majority of parents met criteria for minor psychological distress (86%) and rated the quantity and severity of their children’s difficulties as being in the abnormally high range (74%) at baseline. A majority of participants (61%) rated their perceived social support as being poor. Lower parental well-being was significantly correlated with poorer family communication, poorer parenting satisfaction, and a greater number of difficulties for the child. Perceived social support was not significantly correlated with parental well-being. Parents whose children were not attending school at baseline had significantly lower well-being scores than those whose children were. Parents whose children had received a formal diagnosis of a mental health disorder also had significantly lower well-being scores than those whose children had not.
Conclusions
Parents of young people with DSH behaviours face considerable emotional and practical challenges; they have low levels of well-being, parenting satisfaction, social support, and experience poor family communication. Given the importance of parental support for young people with DSH behaviours, consideration should be given to the need for individual or group support for such parents.
doi:10.1186/1753-2000-7-13
PMCID: PMC3645953  PMID: 23618077
Deliberate self-harm; Parents; Help-seeking; Adolescents; Suicidal behaviour; Parental well-being; Group support programme
11.  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
12.  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
13.  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
14.  The Reproductive Behavior of Families with Thalassemic Children in Hormozgan 
Background:
Thalassemic disorders are the most prevalent monogenic hereditary diseases around the world caused by decreased and altered synthesis or agenesis in one or more globin chains. Families who have a child with thalassemia major face a myriad of significant problems. Hormozgan province ranks second with thalassemic patients in Iran. Therefore, current research is aimed to analyze the reproductive behavior of such families in the southern province of Iran.
Methods:
In this descriptive study 190 mothers of patients suffering from thalassemia major were included. The reproductive behavior of mothers was investigated by a questionnaire regarding the number of thalassemic infants born after their first child with thalassemia major.
Results:
About 23% of these mothers had more than 1 child with major thalassemia. The findings showed that the reasons for conception among these mothers were to have a healthy child (64.2%) and to have a boy (20%). In about 92.6% of mothers CVS test was not performed.
Conclusion:
This study showed that awaring mothers and families regarding the prevention of birth of afflicted infants and provision of accessible diagnostic facilities can reduce the number of children with thalassemia major.
PMCID: PMC4508356  PMID: 26913236
Mothers; Reproductive behavior; Thalassemia
15.  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
16.  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
17.  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
18.  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
19.  Does a parental history of cancer moderate the associations between impaired health status in parents and psychosocial problems in teenagers: a HUNT study 
Cancer Medicine  2014;3(4):919-926.
Severe disease in a parent is associated with increased psychosocial problems in their children. However, moderating factors of such associations are less studied. In this cross-sectional population-based controlled study we examined the moderating effects of a history of parental cancer on the association between impaired health status in parents and psychosocial problems among their teenagers. Among families with both parents responding to the adult Health Survey of Nord-Trøndelag County of Norway (the HUNT-2 study) 71 couples were identified with primary invasive cancer in one parent. Their 81 teenage children took part in the Young-HUNT study. These families were compared to 322 cancer-free families with 328 teenagers. Based on self-report data the relations between three variables of parental impaired health and six psychosocial problems in teenagers were analyzed family wise by structural equation modeling. Significant associations between parental and teenagers' variables were observed in eight of 18 models. A history of parental cancer was a significant moderator which decreased four of eight significant associations. Such a history significantly weakened the associations between parental poor self-rated health and teenagers' anxiety/depression and school problems. A similar association of a history of parental cancer was found between psychological distress in parents and teenagers' feelings of loneliness and poor self-rated health. This study confirmed strong associations between impaired parental health and psychosocial problems in their teenagers. A history of parental cancer weakened several of the significant associations between parental impaired health variables and psychosocial problems in their teenagers.
doi:10.1002/cam4.245
PMCID: PMC4303159  PMID: 24723456
HUNT-2; parental cancer; psychosocial problems; teenagers; young-HUNT
20.  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
21.  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
22.  Parenting Changes in Adults with Cancer 
Cancer  2015;121(19):3551-3557.
Background
Children whose parents have cancer are at-risk for psychosocial difficulties, however, the mechanisms are not well understood. This cross-sectional study sought support for a model connecting parental cancer to child distress through its impact on parent self-efficacy beliefs and parenting behaviors, by examining relationships among parental illness, quality of life/parent functioning, parent and co-parent efficacy beliefs, and concerns about children's emotional distress.
Methods
194 adult oncology outpatients, with children 18 years of age and younger completed questionnaires assessing health-related quality of life (FACT-G), depression and anxiety symptoms (HADS), overall distress (Distress Thermometer), and parent and co-parent efficacy beliefs and parenting concerns (PCQ).
Results
Parent and co-parent efficacy scores declined significantly after diagnosis. This decline correlated with having more visits to a medical clinic, treatment with IV chemotherapy in the past month, poorer health-related quality of life, and more depression and distress. Parents experiencing the most concern about the impact of mood, physical limitations and changes in routines on their children, experienced the biggest declines in their own sense of efficacy as a parent, and in their belief in their co-parent's efficacy. Finally, declines in parenting efficacy beliefs correlated to parent concerns about children's emotional distress about aspects of the parent's illness.
Conclusions
The study highlights the importance of identifying and addressing parenting concerns to alleviate patient distress, and may help guide future intervention efforts.
doi:10.1002/cncr.29525
PMCID: PMC4575606  PMID: 26094587
Parenting; self-efficacy; family relations; quality of life; depression; cancer
23.  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
24.  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
25.  Psychological interventions for parents of children and adolescents with chronic illness 
Background
Psychological therapies have been developed for parents of children and adolescents with a chronic illness. Such therapies include interventions directed at the parent only or at parent and child/adolescent, and are designed to improve parent, child, and family outcomes. This is an updated version of the original Cochrane review published in Issue 8, 2012, (Psychological interventions for parents of children and adolescents with chronic illness).
Objectives
To evaluate the efficacy of psychological therapies that include parents of children and adolescents with chronic illnesses including painful conditions, cancer, diabetes mellitus, asthma, traumatic brain injury (TBI), inflammatory bowel diseases (IBD), skin diseases, or gynaecological disorders. We also aimed to evaluate the adverse events related to implementation of psychological therapies for this population. Secondly, we aimed to evaluate the risk of bias of included studies and the quality of outcomes using the GRADE assessment.
Search methods
We searched the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, EMBASE and PsycINFO for randomised controlled trials (RCTs) of psychological interventions that included parents of children and adolescents with a chronic illness. Databases were searched to July 2014.
Selection criteria
Included studies were RCTs of psychological interventions that delivered treatment to parents of children and adolescents with a chronic illness compared to an active control, waiting list, or treatment as usual control group.
Data collection and analysis
Study characteristics and outcomes were extracted from included studies. We analysed data using two categories. First, we analysed data by each individual medical condition collapsing across all treatment classes at two time points. Second, we analysed data by each individual treatment class; cognitive behavioural therapy (CBT), family therapy (FT), problem solving therapy (PST) and multisystemic therapy (MST) collapsing across all medical conditions. For both sets of analyses we looked immediately post-treatment and at the first available follow-up. We assessed treatment effectiveness for two primary outcomes: parent behaviour and parent mental health. Five secondary outcomes were extracted; child behaviour/disability, child mental health, child symptoms, family functioning, and adverse events. Risk of bias and quality of evidence were assessed.
Main results
Thirteen studies were added in this update, giving a total of 47 RCTs. The total number of participants included in the data analyses was 2985, 804 of whom were added to the analyses in the update. The mean age of the children was 14.6 years. Of the 47 RCTs, the studies focused on the following paediatric conditions: n = 14 painful conditions, n = 13 diabetes, n =10 cancer, n = 5 asthma, n = 4 TBI, and n = 1 atopic eczema. We did not identify any studies treating parents of children with gynaecological disorders or IBD. Risk of bias assessments of included studies were predominantly unclear. Evidence quality, assessed using the GRADE criteria, was judged to be of low or very low quality.
Analyses of separate medical conditions, across all treatment types, revealed two beneficial effects of psychological therapies for our primary outcomes. First, psychological therapies led to improved adaptive parenting behaviour in parents of children with cancer post-treatment (standardised mean difference (SMD) −0.20, 95% confidence interval (CI) −0.36 to −0.04, Z = 2.44, p = 0.01). In addition, therapies also improved parent mental health at follow-up in this group (SMD = −0.18, 95% CI −0.32 to −0.04, Z = 2.58, p = 0.01). We did not find any effect of therapies for parent behaviour for parents of children with a painful condition post-treatment or at followup, or for parent mental health for parents of children with cancer, diabetes, asthma, or TBI post-treatment. For all other primary outcomes, no analysis could be conducted due to lack of data.
Across all medical conditions, three effects were found for the primary outcomes of psychological therapies. PST had a beneficial effect on parent adaptive behaviour (SMD = −0.25, 95% CI −0.39 to −0.11, Z = 3.59, p < 0.01) and parent mental health (SMD= −0.24, 95% CI −0.42 to −0.05, Z = 2.50, p = 0.01) immediately post-treatment and this effect was maintained at follow-up for parent mental health (SMD= −0.19, 95% CI −0.34 to −0.04, Z = 2.55, p = 0.01). The remaining analysis for PST on parent behaviour found no effect. No effects were found for CBT post-treatment or at follow-up for either parent outcome. For FT, only one analysis could be run on parent mental health and no effect was found. Due to lack of data, the remaining analyses of primary outcomes could not be run. For MST, no parent outcomes could be analysed due to lack of data.
Secondary outcome analyses are presented in the Results section. Five studies reported that there were no adverse events during the trial. The remaining 42 studies did not report adverse events.
Authors’ conclusions
This update includes 13 additional studies, although our conclusions have not changed from the original version. There is little evidence for the efficacy of psychological therapies that include parents on most outcome domains of functioning, for a large number of common chronic illnesses in children. However, psychological therapies are efficacious for some outcomes. CBT that includes parents is beneficial for reducing children’s primary symptoms, and PST that includes parents improved parent adaptive behaviour and parent mental health. There is evidence that the beneficial effects can be maintained at follow-up for diabetes-related symptoms in children, and for the mental health of parents of children with cancer and parents who received PST.
doi:10.1002/14651858.CD009660.pub3
PMCID: PMC4838404  PMID: 25874881
Chronic Disease [*psychology]; Cognitive Therapy; Family Therapy; Parenting [psychology]; Parents [*psychology]; Problem Solving; Psychotherapy [*methods]; Randomized Controlled Trials as Topic; Adolescent; Child; Humans

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