Pilot Study on Parental Stress and Behavioral Adjustment to the Thalassemia Major Disease Process in Children Undergoing Iron-Chelation in Western Taiwan

Thalassemia was first described by Cooley and Lee in 1952 in several Italian children as a severe anemia with spleen and liver enlargement, skin discoloration, and bony changes. Great strides in management and intervention have not been matched by progress in psychosocial rehabilitation. Because parental stress and adaptation are of concern, this study focuses on parental stress and adjustment in response to the disease process of their afflicted children in western Taiwan. The parents of 18 thalassemia major patients (under 12 years of age) were interviewed (in two sessions) to determine their feelings, sources of stress, and support during their childrens' disease process. The study found that: 1) many parents suffer from stress as a result of the disease process, 2) all parents had similar concerns about iron chelation treatment, and 3) some resilience factors were present in the support system.     

Quality of life of children with juvenile idiopathic arthritis and its relationship with parental stress

ObjectiveTo determine the quality of life and parental stress in children with juvenile idiopathic arthritis (JIA).MethodsPatients with juvenile idiopathic arthritis (JIA) and their parents were interviewed by a trained nurse in the clinic. Demographic data of parent's education, income, children disease subtype, medications and disease severity were collected. Quality of life was assessed by the Juvenile Arthritis Quality of Life Questionnaire (JAQQ) and parental stress was assessed by Pediatric Inventory for Parents (PIP).Results69 Consecutive children with JIA were recruited. Those children with Polyarticular JIA subtype and with deformity as JIA disease severity grade had poor QOL and those parents of children with Polyarticular subtype and with deformity had high parental stress. The was negative correlation between the QOL and parental stress (r = ?0.55; p = 0.003).ConclusionQuality of life in children with JIA depends on disease subtype and outcome. As the child's QOL decreases parental stress increases. Clinicians should adopt effective techniques to help parents understand their children's medical condition and support them.     

Parental HIV disclosure: from perspectives of children affected by HIV in Henan,China

Culturally and developmentally appropriate parental HIV disclosure (i.e., parents disclose their HIV infection to children) has been shown to be closely related with the well-being of both HIV-infected parents and their children. However, current practices and effects of parental HIV disclosure remain poorly understood in low- and middle-income countries including China. Quantitative data from 626 children affected by parental HIV (orphans and vulnerable children) in Henan, China, were collected in 2011 to examine children's perceptions and knowledge regarding their parents' HIV disclosure practices and to assess the associations of these practices with children's demographic and psychosocial factors. The data in the current study revealed that only a small proportion of children learned parental HIV infection from their parents (direct disclosure), and many of these disclosure seemed being unplanned. Among the children who were not told by their parents, at least 95% of them either knew parental illness from others (indirect disclosure) or from their own observations or suspicions. The children reported similar disclosure practices by fathers and mothers. There were minimum differences between disclosed and nondisclosed children on a number of psychosocial measures. The findings support the notion that parental HIV disclosure is a complex process and can only be beneficial if it is carefully planned. The data in the current study suggest the needs for the culturally and developmentally appropriate approach in parental HIV disclosure in order to maximize both short- and long-term benefits to children, parents, and family functioning.     

应对方式在支气管哮喘患儿父母社会支持与养育压力间的中介作用研究

背景父母的养育压力会直接影响其育儿方式,从而影响患儿的心理健康及疾病转归,故明确应对方式在支气管哮喘(以下简称哮喘)患儿父母社会支持与养育压力间的作用并采取正确的应对方式对改善哮喘患儿疾病转归具有重要意义。目的探讨应对方式在哮喘患儿父母社会支持与养育压力间的中介作用。方法选取2019年5月-2020年9月在广州市红十字会医院和南方医科大学南方医院就诊的哮喘患儿及其父亲或母亲作为研究对象,采用一般资料调查表收集患儿及其父母一般资料,分别采用养育压力短式量表(PSI-SF)、社会支持评定量表(SSRS)、特质应对方式问卷(TCSQ)评估患儿父母养育压力、社会支持及应对方式。哮喘患儿父母PSI-SF及其各维度评分、SSRS及其各维度评分、TCSQ各分量表评分间的相关性分析采用Pearson相关分析;采用Mplus 7.4软件构建结构方程模型及Bootstrap法验证应对方式在哮喘患儿父母社会支持与养育压力间的中介作用。结果本研究共发放295份问卷,回收有效问卷276份,有效回收率为93.56%。哮喘患儿父母PSI-SF评分为(108.36±18.88)分,其中养育压力大者225名(占81.52%),各维度中亲职愁苦评分最高。哮喘患儿父母SSRS及社会支持、支持利用度评分均低于健康儿童父母(P <0.05)。哮喘患儿父母积极应对评分低于健康儿童父母,消极应对评分高于健康儿童父母(P <0.05)。Pearson相关分析结果显示,哮喘患儿父母PSI-SF及其各维度评分与SSRS及其各维度评分、积极应对评分呈负相关,与消极应对评分呈正相关(P <0.05);哮喘患儿父母SSRS及其各维度评分与积极应对评分呈正相关,与消极应对评分呈负相关(P <0.05);哮喘患儿父母PSI-SF评分与其各维度评分间、SSRS评分与其各维度评分间均呈正相关,积极应对评分与消极应对评分呈负相关(P <0.05)。构建的哮喘患儿父母社会支持、应对方式、养育压力中介模型的拟合度指数为χ2/df=4.34,近似误差均方根(RMSEA)=0.041。Bootstrap法检验社会支持→应对方式→养育压力的间接效应占73.12%,其中社会支持→积极应对→养育压力的间接效应占43.58%、社会支持→消极应对→养育压力的间接效应占29.54%,表明应对方式在哮喘患儿父母社会支持和养育压力间的中介效应成立。结论哮喘患儿父母养育压力大、社会支持水平低、更倾向于消极应对,且应对方式在哮喘患儿父母社会支持与养育压力间起部分中介作用,故医护人员应引导哮喘患儿父母采取积极应对方式,以提高其社会支持水平、减轻其养育压力。     

Parenting a child with phenylketonuria or galactosemia: implications for health-related quality of life

Parents of children with chronic disorders have an impaired health-related quality of life (HRQoL) compared to parents of healthy children. Remarkably, parents of children with a metabolic disorder reported an even lower HRQoL than parents of children with other chronic disorders. Possibly, the uncertainty about the course of the disease and the limited life expectancy in many metabolic disorders are important factors in the low parental HRQoL. Therefore, we performed a cross-sectional study in parents of children with phenylketonuria (PKU, OMIM #261600) and galactosemia (OMIM #230400), metabolic disorders not affecting life expectancy, in order to investigate their HRQoL compared to parents of healthy children and to parents of children with other metabolic disorders. A total of 185 parents of children with PKU and galactosemia aged 1–19 years completed two questionnaires. Parents of children with PKU or galactosemia reported a HRQoL comparable to parents of healthy children and a significantly better HRQoL than parents of children with other metabolic disorders. Important predictors for parental mental HRQoL were the psychosocial factors emotional support and loss of friendship. As parental mental functioning influences the health, development and adjustment of their children, it is important that treating physicians also pay attention to the wellbeing of the parents. The insight that emotional support and loss of friendship influence the HRQoL of the parents enables treating physicians to provide better support for these parents.     

Parental social support, coping strategies, resilience factors, stress, anxiety and depression levels in parents of children with MPS III (Sanfilippo syndrome) or children with intellectual disabilities (ID)

Mucopolysaccharidosis type III (MPS III, Sanfilippo syndrome) is a lysosomal storage disorder, caused by a deficiency in one of four enzymes involved in the catabolism of the glycosaminoglycan heparan sulphate. It is a degenerative disorder, with a progressive decline in children’s intellectual and physical functioning. There is currently no cure for the disorder. To date there is a paucity of research on how this disorder impacts parents psychological functioning. Specifically, research in the area has failed to employ adequate control groups to assess if the impact of this disorder on parents psychological functioning differs from parenting a child with intellectual disability (ID). The current study examined child behaviour and parental psychological functioning in 23 parents of children with MPS III and 23 parents of children with ID. Parents completed postal questionnaires about their child’s behaviour and abilities and their own psychological functioning. Parents of children with MPS III reported fewer behavioural difficulties as their child aged, more severe level of intellectual disability, and similar levels of perceived social support, coping techniques, stress, anxiety and depression levels as parents of children with ID. Both groups of parents scored above the clinical cut off for anxiety and depression. Parents of children with MPS III rated themselves as significantly less future-orientated and goal directed than parents of children with ID. Services should develop support packages for parents of children with MPS III that incorporate an understanding of the unique stressors and current-difficulty approach of this population. Future research should examine gender differences between parental psychological functioning, using mixed qualitative and quantitative approaches, and utilise matched developmental level and typically developing control groups.     

The development and establishment of a care map in children with asthma in Taiwan.

BACKGROUND: It is often difficult to predict the timing and frequency of asthma attacks. In addition to interrupting the daily life of both the affected child and his/her family, asthma can also pose sudden danger to a child. Based on clinical observations, many asthma-affected children and their parents must constantly adjust themselves to the uncertainty of the disease, which leads to increased stress on the family. The use of care maps has demonstrated increased efficiency and effectiveness in the care of asthma patients from a variety of settings. OBJECTIVE: We designed this study to construct and evaluate a care map for asthmatic children in Taiwan. Specific attention was placed on comparing the study and control subjects by parental knowledge of asthma, medication used for asthma, hospital readmission, and health care resource usage. SUBJECTS AND METHODS: The care map was constructed by in-depth interviews with eight sets of parents of children with asthma. Forty-four parents of 42 asthma children were randomized into two groups in the Allergic Clinic of the Chang Gung Children's Hospital. The experimental group of 22 parents received individual instruction and training sessions in addition to the regular care provided to the control group of 22 parents. RESULTS: Forty-two children with asthma were surveyed in this study. To examine the reliability and validity of a care map for children with asthma, a quantitative survey was conducted with 42 outpatient parents with asthmatic children. There was less emergency room attending rate in experimental group (6/month; p<0.05) The understanding of the disease was much improved in parents of experimental group (13.85+/-1.04 vs. 10.91+/-2.14; p<0.01). Furthermore, parents acquired a more positive attitude to asthma, and almost all of the control group had irregular follow-ups by a physician and had irregular use of medication. CONCLUSION: This study emphasizes that a care map in children with asthma (CACM) can be used to educate parents in how to provide the best treatment plan for their children. This study also shows how a CACM can help parents train their children in the best behaviors during asthma attacks. Empathetic assessment and elimination of cultural barriers, a well-designed educational program, and a mutually developed treatment plan could significantly improve the quality of life for families and specific asthma outcomes.     

Long-term effects of pediatric intensive care unit hospitalization on families with young children.

OBJECTIVE: The purpose of this study was to prospectively examine the long-term effects of the pediatric intensive care unit experience on parents and on family adaptation. DESIGN: A three-group prospective, comparison, convenience sample was used in this study. SETTING: The study took place in a midwestern university-affiliated tertiary pediatric medical center. SUBJECTS: Three groups of parents (parents with children in the pediatric intensive care unit, parents with children in a general care unit, and parents with nonhospitalized ill children) were studied. The children were ages 5 years or younger. OUTCOME MEASURES: Indicators of family adaptation included parental stress, stress symptoms, family functioning, and life events. RESULTS: The mothers' stress symptoms in all groups were more prevalent than a normative sample, and they perceived their families as dysfunctional after discharge from the hospital. Slope analysis was used to examine the patterns of stress symptoms and family functioning and indicated little directional change over time for the mothers. CONCLUSION: Despite the smaller than expected sample sizes over time, results suggest that parents are still having stress-related symptoms and difficulties with family functioning as long as 6 months after a child's illness event.     

Parental anxiety before invasive cardiac procedure in children with congenital heart disease: Contributing factors and consequences

Objective: Medical information provided to parents of a child with a congenital heart disease can induce major stress. Visual analog scales have been validated to assess anxiety in the adult population. The aim of this study was to analyze parental anxiety using a visual analog scale and to explore the influencing factors.
Design: This prospective cross‐sectional study.
Setting: Tertiary care regional referral center for congenital heart disease of Marseille-La Timone university hospital.
Patients: Parents of children with a congenital heart disease, as defined by the ACC‐ CHD classification, referred for cardiac surgery or interventional cardiac catheterization, were offered to participate.
Intervention and outcome measure: The parental level of anxiety was assessed using a visual analog scale (0‐10) before intervention and after complete information given by the cardiologist, the surgeon or the anesthetists.
Results: Seventy‐three children [7 days‐13 years], represented by 49 fathers and 71 mothers, were included in the study. A total of 42 children required cardiac surgery and 31 children underwent interventional cardiac catheterization. The mean score of maternal anxiety was significantly higher than the paternal anxiety (8.2 vs 6.3, P < .01). A high level of maternal anxiety (visual analog scale > 8) was associated with paternal anxiety (P = .02), the child's comorbidity (P = .03), the distance between home and referral center (P = .04), and the level of risk adjustment for congenital heart surgery (P = .01). In multivariate analysis, maternal anxiety was associated with paternal anxiety (OR = 4.9; 95% confidence interval [1.1‐19.2]), and the level of risk adjustment for congenital heart surgery (OR = 11.4; 95% confidence interval [1.2‐116.2]). No significant association was found between parental anxiety and prenatal diagnosis.
Conclusion: This study highlighted several factors associated with the parental anxiety. Identifying the parents at risk of high stress can be useful to set up psychological support during hospitalization.     

Association between parental perception of children's vulnerability to illness and management of children's asthma

This study examined the relationship between asthma management strategies used by parents and parental perception of children's vulnerability to illness. Home interviews were conducted with 101 parents of children previously hospitalized with asthma. The child vulnerability scale (CVS) was employed to assess parents' perception of their children's vulnerability to illness. The asthma severity index (ASI) was used to measure the frequency and intensity of asthma symptoms experienced by children in the preceding 12 months. Five markers of parental asthma management were assessed: (i) school absences; (ii) visits to the general practitioner (GP); (iii) visits to the emergency room (ER); (iv) hospitalizations; and (v) whether children are using a regular preventer. After controlling for the frequency and intensity of children's asthma symptoms, parents who perceived that their children were more vulnerable to medical illness were significantly more likely to keep their children home from school (P = 0.01), were more likely to take their children to the GP for acute asthma care (P = 0.02), and were more likely to be giving their children regular preventer medication (P = 0.02). In contrast, the use of tertiary pediatric care services was not significantly associated with parental perceptions of their children's vulnerability. The results suggest that parental attitudes and beliefs about the vulnerability of their children to illness were associated with greater use of GP services by parents and more frequent school absences for children. The use of hospital services by parents appeared to be more strongly associated with the actual level of children's asthma symptoms than their vulnerability to illness.     

The Changing Impact of the AIDS Epidemic on Older-Age Parents in the Era of ART: Evidence from Thailand

Previous research makes clear that before antiretroviral therapy (ART), when HIV led to disabling illness and certain death, many older persons as parents of infected adults experienced adverse emotional, material and social consequences. The present study examines how widespread access to ART is transforming the situation in Thailand. Interviews with parents of adult ART recipients reveal that major improvements in the health of their adult children under treatment is associated with major reductions in parental caregiving and expenses associated with their HIV-infected child although parents continue to provide psychological support. Parents own worry about their child’s health also declines. Most adult children on ART are able to continue or resume economic activity and many contribute to support of the parental household. ART appears to reduce negative community reaction. Nevertheless, given uncertainty surrounding how long ART can protect against fatal illnesses, whether the adverse impacts of the AIDS epidemic on parents are being eliminated or only postponed remains an open question.     

Reciprocity in parent-child relations over the adult life course.

OBJECTIVES: This research assessed how parents' transfers of sentiment, time, and financial assets to their adolescent/young adult children affect the children's propensity in middle age to provide social support to their aging parents. We tested whether the mechanism of long-term intergenerational exchange is better modeled as a return on investment, an insurance policy triggered by the longevity or physical frailty of parents, or the result of altruistic (or other nonreciprocal) motivations on the part of adult children. METHODS: Models were examined with 6 waves of data from the University of Southern California Longitudinal Study of Generations. The sample consisted of 501 children who participated in the 1971 survey and who had at least 1 parent surviving in 1985. Growth curve modeling was applied to predict average levels and rates of change in social support provided to mothers and fathers between 1985 and 1997 as a function of early parental transfers of affection, association, and tangible resources to their children. RESULTS: Children who spent more time in shared activities with their mothers and fathers in 1971 provided more support to them on average. Receiving greater financial support from parents in 1971 raised the marginal rate at which support provided by children increased over time. Maternal health operated synergistically with early affection to produce greater levels of support. Both levels and rates of increase in support from children were positive, even for children who received no early transfers from their parents. DISCUSSION: The results offer some support for investment, insurance, and altruistic models of intergenerational exchange. Sharing time in activities provides a direct return to the parent that is characteristic of an investment strategy, whereas financial transfers provide a time-contingent return that is characteristic of an insurance mechanism. That affection triggers greater support to more functionally impaired mothers suggests that emotionally investing in children as a health insurance mechanism may be based on the greater moral equity accorded to mothers. The motivation of adult children to provide social support to their older parents is partially rooted in earlier family experiences and guided by an implicit social contract that ensures long-term reciprocity.     

What is the burden of chronic cough for families?

BACKGROUND: The burden of children's chronic cough to parents is largely unknown. The objectives of this study were as follows: (1) to determine the burden of chronic cough using a purposely designed questionnaire, and (2) to evaluate psychological (child's anxiety and parental emotional distress) and other influences on the reported burden of cough. METHODS: Parents of children newly referred for chronic cough completed three questionnaires (Spence anxiety scale; depression, anxiety, and stress 21-item scale [DASS]; and burden of cough questionnaire) at enrollment. The last 79 parents also completed these questionnaires at follow-up. RESULTS: Median age of the 190 children recruited was 2.6 years. The number of medical consultations for coughing illness in the last 12 months was high: > 80% of children had > or = 5 doctor visits and 53% had > 10 visits. At presentation, burden scores correlated to parental DASS scores when their child was coughing. Stress was the largest contributor to parents' emotional distress. Parental anxiety and depression scores were within published norms. Scores on all three DASS subscales reduced significantly when the children ceased coughing. At follow-up, the reduction in burden scores was significantly higher in the "ceased coughing" group (n = 49) compared to the "still coughing" group (n = 32). CONCLUSIONS: Chronic cough in children is associated with a high burden of recurrent doctor visits, parental stress, and worries that resolve when cough ceases. Parents of children with chronic cough did not have above-average anxiety or depression levels. This study highlights the need to improve the management of children with chronic cough, including clinicians being cognizant of the emotional distress of the parents.     

How much do parents know about their children's heart condition and prophylaxis against endocarditis?

BACKGROUND: Caregivers are frequently expected to serve as a conduit for information between heath care providers; however, few previous studies showed inadequate parental knowledge about their children's heart disease. OBJECTIVES: To assess parental knowledge regarding their children's congenital heart disease, risk of bacterial endocarditis (BE) and requirement for BE prophylaxis. METHODS: Parents of 65 consecutive children with heart disease, aged from two months to 16 years, were asked to complete a survey while awaiting their ambulatory appointment. RESULTS: On average, patients had been seen by 1.7 cardiologists and had attended 7.8 clinic appointments before the study, with 55% having undergone heart surgery and 18% currently taking cardiac medications. In general, caregivers felt they had received full explanation of their child's condition (89%) and were informed sufficiently about ongoing care (91%), yet only 71% knew the specific name of their child's heart defect, with 65% being able to correctly explain the condition in layman's terms. Of the 55 children whose heart defects fulfilled risk criteria for BE, only 47% of their parents declared to have ever heard of the disease, with just 25% able to correctly define it. Although 71% of the children's parents knew that special medication was required when seeing a dentist, only 29% were aware of any other situations when they would also require it. As many as 27% of the children who required BE prophylaxis had had significant dental problems in the past, including root canals, extracted teeth, braces, caps and gingivitis. CONCLUSION: Many parents are not familiar with their child's heart disease and do not understand the risks of BE or the need for BE prophylaxis. Results of this study and several other queries published over the past 20 years point to the need for continuous education of patients and their parents by physicians, nurses and allied health care providers.     

Cooperation between parents in caring for diabetic children: relations to metabolic control and parents'' field-dependence-independence

Aspects of parental interaction were assessed in 20 families with diabetic, insulin-dependent children, using hour-long video-taped interviews, the children being in optimal (O, n = 10) or poor (P, n = 10) metabolic control and showing optimal or poor psychological adaptation. In comparison with the O-group parents, the P-group parents were less appreciative of one another, were less congruent in their attitudes to diabetes care, and appeared not to respect their childrens' independence and integrity; the mothers were discontented with the support given them by their husbands; the children assumed less responsibility for managing their diabetes and seemed less confident during the interview. The results are interpreted in light of an earlier finding that the P-group fathers are more field-dependent (FD) than their wives while the opposite is true for the O-group fathers. With reference to evidence from the cognitive style literature, we suggest that the relatively FD P-group fathers have difficulties in acting as autonomous sources of support to their wives resulting in marital discord and a delayed transition from maternal to self care in their children.     

Parents of children with rheumatic disease as peer counselors

Objective. A parent consultant program was established to promote active family involvement in the health care process and to provide parent-to-parent support, education, and training. Methods. Parents of children with rheumatic disease were hired by 7 pediatric rheumatology centers to serve as role models and advocates for other parents whose children attended the clinics. In the clinic, the parent consultants provided support, advocacy, and education regarding specific nonmedical issues. At the local level, they assisted parents in obtaining community-based services, such as individual educational plans at school, local physical therapy, or access to recreational resources. Results. Program impact was evaluated by an anonymous, mail-response questionnaire sent to parents who met with a parent consultant during a clinic visit for their child. Surveys were sent within 6 months of the initial parent consultant meeting; 257 questionnaires were mailed, 33% were returned. The majority of respondents (87%) felt their interaction with the parent consultant was helpful. The general support received and the specific information and/or assis-tance received were found to be equally useful by respondents. The majority of respondents (98%) stated they would recommend that other parents meet with the parent consultant. Conclusion. Parents of children with rheumatic disease are effective peer counselors, providing general support and specific assistance to enhance family involvement in care.     

Posttraumatic stress disorder in children affected by sickle-cell disease and their parents

Children affected with sickle-cell disease experience painful crises that may be life threatening, or felt as if they were. We evaluated by semistructured interviews and questionnaires the presence of posttraumatic stress disorder in 11 children affected by sickle-cell disease and having suffered at least one hospitalization for a painful crisis, and in their parents (10 mothers, 1 father). Three children (27%) and four parents (40%) were diagnosed with the disorder. It was not correlated to the disease severity but, in parents, to a feeling of powerlessness over the child's illness (P = 0.04).     

Family conditions and dietary control in phenylketonuria

Summary Objective This investigation is an attempt to describe coping with phenylketonuria (PKU) in order to understand some aspects underlying good compliance. Methods The coping concept was applied to PKU in two questionnaires. Self- and parental ratings were combined with assessments of phenylalanine levels and the severity of the disease. All Swedish patients with PKU born in 1980–91, a total of 53 children and youths with their parents, were invited to participate in the study and 41 (77%) of them did so. Results The patients turned out to have good compliance with the diet. The main result was that patients with separated or divorced parents were more likely to have higher phenylalanine levels and this association was not diminished by adjustment for the potential confounding factors. Conclusion Patients’ need for support must be judged individually according to different family conditions. Competing interests: None declared