Health-Related Quality of Life in Children and Adolescents With Inflammatory Bowel Disease

This study examined the health-related quality of life (HRQOL) of children with Inflammatory Bowel Disease (IBD) compared with physically healthy children and the impact of IBD and steroidal side-effects on children's HRQOL. The HRQOL of 49 children and adolescents (ages 10 to 18 years) with IBD and their parents who completed the Child Health Questionnaire (CHQ; Landgraf & Abetz, 1997; Landgraf, Abetz, & Ware, 1996) was compared to that of a sample of physically healthy children (N = 49). Caregivers of children with IBD reported that their children's physical and psychological health were more limited and that they experienced more emotional worry and greater impact on their personal time compared to caregivers reporting on healthy same-age children. Children and adolescents reported worse HRQOL than physically healthy children in only one domain: general health. Children and adolescents with more IBD-related and steroidal symptoms had less adequate HRQOL as reported by their parents. Limitations in HRQOL were most pronounced in children who experienced more frequent IBD-related symptoms together with symptoms of steroidal side effects.     

Quality of life among parents of children with congenital heart disease,parents of children with other diseases and parents of healthy children

We compared quality of life among parents of children with congenital heart disease (PCCHD, n = 1092), parents of children with other diseases (PCOD n = 112) and parents of healthy children (PHC, n = 293). We also identified determinants of quality of life among the parents. The parents completed a questionnaire about such areas as quality of life and financial situation. The design was cross-sectional and data were collected during 20 consecutive days. The univariate analyses showed that PCCHD tended to report lower quality of life than PHC. Mothers reported lower quality of life than fathers, with the lowest levels among mothers of children with CHD. The multivariate analyses revealed however that variables such as distress, hopelessness and financial situation were more important in explaining the reduced quality of life than parental gender and the presence/severity of the children's heart diseases. We corroborated previous findings and may have provided new insights into the quality of life experiences of parents of children with CHD that may be important when considering interventions to improve their situation.     

Impact of Parental Involvement in Life-Support Decisions: A Qualitative Analysis of Parents' Adjustment Following Their Critically Ill Child's Death

A retrospective, qualitative, preliminary study examined if parental involvement in a life-support withdrawal (LSW) decision impacts the perceptions and adjustment of parents whose child died in a pediatric critical care unit. Participants were parents whose child died following an LSW decision (11 mothers, 7 fathers) and parents whose child died without an LSW decision (5 mothers, 4 fathers). At 6 to12 months after their child's death, the two groups of parents were interviewed and asked to reexamine their perceptions of the following categories: understanding of child's medical condition, staff communication, support, and feelings of closure. Content analysis of the interview data indicated that in comparison to parents whose child died without an LSW decision, a significantly greater number of parents whose child died following an LSW decision were certain about their child's future health; believed that their child's quality of life would have been unacceptable; and reported less dissatisfaction with time spent with their child, fewer negative changes in family functioning, and more positive changes in feelings toward staff.     

Child and parent perspectives of life quality of children with physical impairments compared with non-disabled peers

Background: Life quality has become a widely used concept within rehabilitation and occupational therapy practice.

Aim: This study explored child and parent perspectives of life quality of children with physical impairments compared with a group of non-disabled children.

Method: Data were collected with the Icelandic self- and proxy-reported versions of the KIDSCREEN-27. For children with physical impairments, reports from 34 children and 40 parents were included in the analyses, and in control group reports from 429 children and 450 parents were included.

Results: Children with physical impairments evaluated their life quality within the average range on four out of five life quality dimensions. The lowest scores were within the physical well-being dimension. Self-reported scores of children with physical impairments were higher than those of their parents on all dimensions except autonomy and parent relations. Thus, the parents considered more environmental and personal factors to negatively influence their child’s life quality than children did themselves.

Conclusion: Children with physical impairments experience their life quality similarly to non-disabled children.

Significance: Focus on life quality can help occupational therapists to identify what circumstances positively or negatively influence client well-being and to focus more on contextual factors that contribute to disablement.     

Disentangling Associations of Children's Sports Participation and Compulsive Exercise With Parenting Practices and Child Disordered Eating Behavior

PurposeExercise can enhance health and well-being. Exercise can also, when it is highly driven and compulsive, reflect eating disorder psychopathology. The present study examined associations of compulsive exercise and youth athletics with child disordered eating behaviors (overeating, binge eating, and secretive eating) and with parenting practices related to eating and weight, including how parents talk to their children about weight.MethodsParticipants were parents (N = 875) who completed an online cross-sectional survey. Parents reported whether their child was an athlete and how often their child exercised in a “driven” or “compulsive” way to control their weight. Four groups were compared: child athletes with compulsive exercise (Group AE: n = 34, 3.9%), athletes without compulsive exercise (Group A: n = 314, 35.9%), nonathletes with compulsive exercise (Group E: n = 40, 4.6%), and nonathletes without compulsive exercise (Group X: n = 487, 55.7%).ResultsThere was a significant, graded association of eating/weight-related parenting: parents of Group E children had the most negative eating/weight-related parenting, followed by parents of Group AE children, followed by both noncompulsive exercise groups (Group A and Group X). Parents reported significantly more “fat talk” in both compulsive exercise groups (Group AE and Group E) than noncompulsive exercise groups (Group A and Group X). Significantly more youth had regular disordered eating behaviors (overeating, binge eating, and secretive eating) in compulsive exercise groups (Group AE and Group E) compared with noncompulsive exercise groups (Group A and Group X).ConclusionsOverall, relatively few youth were categorized as engaging in compulsive exercise. However, compulsive exercise, particularly among nonathletes, was consistently associated with both disordered eating behaviors and eating/weight-related parenting practices. Stronger associations emerged for compulsive exercise than child athletics.     

Impact of Lifestyle Disruption on Parent and Child Coping, Knowledge, and Parental Discipline in Children With Sickle Cell Anemia

We compared the knowledge of sickle cell disease, child and parent coping strategies, and parent discipline methods/knowledge in three groups of children and their parents. The groups were composed of: (a) children with sickle cell anemia who experienced disease-related significant lifestyle disruption, (b) children with sickle cell anemia who experienced disease-related minimal lifestyle disruption, and (c) non-ill Black children. The groups were matched for age, sex, and ethnicity. No differences were found among the groups on measures of child coping. Children with sickle cell anemia, regardless of level of disruption, reported more knowledge about sickle cell disease than did healthy peers. Parents of children in the significant lifestyle disruption groups scored lower on the Engagement, Emotional Engagement, and Problem-Focused Disengagement, and higher on the Medical Coping scales of the Coping Strategies Inventory than parents of healthy children and children in the minimal lifestyle disruption group. Surprisingly, the groups did not differ in discipline knowledge; however, parents of children in the minimal lifestyle disruption group reported significantly greater use of effective discipline methods than parents of healthy children. Further research on the relations among coping, discipline, and lifestyle disruption due to SCA in children is suggested.     

Exploring quality of life in families of children living with and without a severe food allergy

This study aimed to explore the impact of food allergy on quality of life in children with food allergy and their primary caregivers, compared to a healthy non-food allergy comparison group. Food allergy children (n = 34) and control children (n = 15), aged 8-12, and their respective primary caregivers (n = 30/n = 13), completed generic quality of life scales (PedsQL™ and WHOQOLBREF) and were asked to take photographs and keep a diary about factors that they believed enhanced and/or limited their quality of life, over a one-week period. Questionnaire analysis showed that parents of children with food allergy had significantly lower quality of life in the social relationships domain and lower overall quality of life than the comparison parents. In contrast, children with food allergy had similar or higher quality of life scores compared to comparison children. Content analysis of photograph and diary data identified ten themes that influenced both child and parental quality of life. It was concluded that although food allergy influenced quality of life for some children, their parent's quality of life was hindered to a greater extent. The variability in findings highlights the importance of assessing quality of life in individual families, considering both children with allergies and their primary caregivers.     

孤独症儿童家长生存质量的研究

目的 分析孤独症患儿对其父母生存质量的影响,为有关机构展开工作提供参考依据。方法 采用普适性生存质量测定量表(SF-36),对90例孤独症患儿父母及120例正常儿童的父母进行评定。结果 1)孤独症组父母的生存质量总分及各领域评分均低于正常父母组(P＜0.01);2)低功能孤独症组的父母生存质量评分明显低于高功能孤独症组(P＜0.01);3)患儿家长的生存质量与患儿病情程度呈负相关,与智力水平呈正相关 (P＜0.01)。 结论 孤独症儿童对患儿父母生存质量有影响,低功能孤独症患儿则影响更大。     

Feeding and sleeping problems in infancy – a follow‐up at early school age

Background Feeding and sleeping problems are common during infancy. Many regulatory problems of this kind are connected to various child and family factors. This study is a follow‐up of children with early feeding and/or sleeping problems, 6 years after clinical contacts. Methods A total of 230 families (72%) participated in the questionnaire follow‐up. Children and parents were compared with 227 (71%) reference families regarding sleeping and feeding problems, health factors in parent and child, psychosocial problems, stressful life events, social support, life satisfaction, and externalizing and internalizing behaviour in the child. Results Six years after clinical contacts the children with early feeding and/or sleeping problems still had more problems of this kind compared with the reference children. Early child health problems were more frequent within the clinical group, but recent health problems did not separate the two groups. Mothers in the clinical sample reported more health problems than mothers in the reference group and clinical parents were less content with their social support and had more psychosocial problems, including stressful life events. Children in the clinical sample had more internalizing problems than comparison children. Recent feeding and sleeping problems were connected to more externalizing and internalizing problems. Conclusions Early regulatory problems, concerning sleeping or feeding, are less frequent when the child grows up, but nevertheless tend to remain. A clinical recommendation for child health care is to take both child and family factors into account, to individualize contacts, work with an all‐inclusive perspective and have close follow‐ups.     

Quality of Life in Obese Youth With and Without Sleep Problems

This study compared quality of life (QOL) and psychosocial functioning of youth who are overweight and obese, with and without sleep troubles. A total of 80 youth (8-17 years) and their parents completed questionnaires assessing child QOL, psychosocial functioning, and sleep during an outpatient Obesity Clinic appointment. Twenty-nine percent of children reported sleep troubles. Youth with sleep troubles reported lower QOL and more internalizing problems than youth without sleep troubles. Longitudinal research with repeated measurement and use of validated measures of sleep is warranted. These preliminary data suggest improved sleep may help increase behavioral and psychosocial functioning in obese youth.     

Congenital defects and occupational factors. A comparison of different methodological approaches

In a previous study of children with congenital CNS (central nervous system) defects (N = 120), it was shown that exposure had occurred more often among the study mothers than among their referents. In the present study this population, extended with a one-year material of parents of children with oral clefts (N = 102) and their referents, was analyzed in a conventional way concerning occupational factors. This procedure was carried out in order to determine whether information on occupational factors only would provide enough hints to confirm known information concerning exposure, which had been acquired with the more-detailed but laborious interview method. No significant differences were observed in a comparison between the study groups and their referents when work of the mothers outside the home during pregnancy was considered. According to the social class grouping, classes 3 and 4 appeared more often among parents of children with congenital CNS defects than among their referents. With respect to industrial classification, manufacturing and different community services occurred more often among mothers of children with congenital CNS defects and oral clefts than among their referents. Some clustering could be observed with regard to the occupations of the parents in the two study groups as compared to their referents. When the material was methodologically processed in the conventional way described, no obvious conclusions could be drawn about exposure.     

Which source should we use to measure quality of life in children with asthma: The children themselves or their parents?

This study compares the reproducibility, construct validity and responsiveness of self-report and parent-report quality of life questionnaires How Are You (HAY) for 8–12-year-old children with asthma. A total of 228 Dutch children with asthma and their parents completed the HAY and daily recorded the child's asthma symptoms in a diary. Additionally 296 age- and -gender matched healthy children and their parents completed the generic part of the HAY. Reproducibility and responsiveness were examined in a sub-group of 80 children with asthma. In this group, three measurements were carried out, at baseline, after one week and once during the following 6 month when the clinical asthma status had changed. The within-subject standard deviations (SD) of three dimensions (physical activities, social activities, self-management) differed significantly (p < 0.05) in favour of the parent-version, indicating that the reproducibility of the parent version was better than that of the child version. The mean score-differences between children with asthma and healthy children as reported by parents did not significantly differ from those reported by children, except for cognitive activities (e.g. be able to concentrate on school work). The mean differences with regard to children with a different actual asthma status (symptom analysis), as reported by both informants, did not differ. Compared to the child-version, the parent-version showed greater ability to detect changes in children's quality of life over time for all but one dimension, indicating better responsiveness. The results indicate that in discriminative studies child and parents reports can be substituted on a group-level. In longitudinal studies data have to be obtained from parents. Consequently, caregivers collecting quality of life data for longitudinal purposes in daily practice should collect these data simply from parents. This revised version was published online in June 2006 with corrections to the Cover Date.     

白血病患儿及家长的心理状况及干预

目的调查白血病患儿及家长心理健康状况和疾病应对方式,为心理干预提供依据。方法采用焦虑性情绪障碍筛查表、抑郁障碍自评量表、患病行为问卷、SCL-90症状自评量表、医学应对方式和应对方式问卷,对60例白血病患儿（初治和强化组各30例）、39例非恶性血液病患儿（对照组）及52例健康组儿童和家长,进行心理卫生和应对方式调查。结果与健康组相比,白血病组患儿及家长存在较多负性情绪,初治组更明显;白血病组较对照组更多采用回避和放弃方式来应对疾病,其家长的自责、求助和幻想的分数高于对照组。结论白血病儿童及家长存在较多的心理问题及消极应对方式。有效的心理干预有助于提高患儿的生活质量和改善家长的身心健康。     

Parent-proxy and child self-reported health-related quality of life: using qualitative methods to explain the discordance

Background Although parent-proxy reports of health-related quality of life (HRQOL) are only moderately correlated with child reported HRQOL, it remains unknown why these scores differ. The aim of this study was to use a qualitative methodology to examine why parents and children report different levels of HRQOL. Method The sample consisted of 15 parent–child pairs. A think-aloud technique was used where parents and children were given a generic HRQOL instrument (KIDSCREEN) and instructed to share their thoughts with the interviewer. Qualitative analyses were conducted to assess whether parents and children base their answer on different experiences or reasoning, have different response styles, or interpret the items differently. Results There was discordance between parents and children, in terms of rating scale and in terms of the reasoning for their answer. Children tended to have different response styles to parents, where for example, children tended to provide extreme scores (highest or lowest score) and base their response on one single example, more than parents. Parents and children interpreted the meaning of the items very similarly. Discussion This study provides evidence to suggest that discordance among parent-child pairs on KIDSCREEN scores may be as a result of different reasoning and different response styles, rather than interpretation of items. These findings have important implications when parent-proxy reported HRQOL is used to guide clinical/treatment decisions.     

An Evaluation of an Integrated Health Care Program for Children With Special Needs

This study was designed to evaluate a program integrating physical and mental health services for children with special health care needs. Clinical outcomes were assessed by comparing families in integrated clinics (N = 80) with families in traditional clinics (N = 36). Parents and children ages 8 to 16 completed a series of questionnaires to assess differences in child behavior and coping, parents' perceptions of child vulnerability, and parent well-being and coping. Demographic variables and child's health status were also assessed with questionnaires and controlled for in subsequent analyses. There were no differences between groups on demographic variables or health status, though children in the integrated clinics had been diagnosed at an earlier age. Parents in the integrated program reported significantly fewer behavioral symptoms than parents in the nonintegrated clinics. Significantly fewer children from integrated clinics were in the clinical range for poor school functioning compared to children in nonintegrated clinics. No differences emerged in coping or parent well-being. Results provide preliminary support for integrating health and mental health care services for children with special needs. Suggestions for improving future evaluation efforts and clinical practice are discussed.     

Parental Report of Eating Problems and Gastrointestinal Symptoms in Children With Pervasive Developmental Disorders

Parents of children of 89 children with pervasive developmental disorder were surveyed about their child's eating, gastrointestinal symptoms, and behavior problems. Results revealed potentially interesting relationships among self-injurious behavior, pica, feeding problems, and gastrointestinal symptoms in this population. Although over 60% of children were reported to have strong food preferences, only 6.7% of parents reported that their child had a feeding problem. Most children exhibited high rates of pica and self-injurious behavior that affected the family's quality of life. Some children experienced at least one symptom of gastrointestinal distress weekly, and bowel problems appeared to be related to some aspects of feeding. Although methodological issues limit these data, future research should focus on further relations among these factors in this population.     

An Evaluation of an Integrated Health Care Program for Children With Special Needs

This study was designed to evaluate a program integrating physical and mental health services for children with special health care needs. Clinical outcomes were assessed by comparing families in integrated clinics (N = 80) with families in traditional clinics (N = 36). Parents and children ages 8 to 16 completed a series of questionnaires to assess differences in child behavior and coping, parents' perceptions of child vulnerability, and parent well-being and coping. Demographic variables and child's health status were also assessed with questionnaires and controlled for in subsequent analyses. There were no differences between groups on demographic variables or health status, though children in the integrated clinics had been diagnosed at an earlier age. Parents in the integrated program reported significantly fewer behavioral symptoms than parents in the nonintegrated clinics. Significantly fewer children from integrated clinics were in the clinical range for poor school functioning compared to children in nonintegrated clinics. No differences emerged in coping or parent well-being. Results provide preliminary support for integrating health and mental health care services for children with special needs. Suggestions for improving future evaluation efforts and clinical practice are discussed.     

Parenting Satisfaction and Efficacy Among Caregivers of Children With Diabetes

This study assessed parenting satisfaction and efficacy in 53 parents of children with diabetes and 39 parents of physically healthy children. In addition, the relationship between parenting self-esteem and perceptions of child behavior, child age, disease duration, and metabolic control were examined. Parents of children with diabetes reported significantly lower levels of parenting satisfaction and efficacy compared to parents of healthy children, and their negative parental cognitions are most influenced by perceptions of more internalizing child problems, shorter diabetes duration, and poorer metabolic control. Parenting self-esteem was significantly inversely correlated with both internalizing and externalizing child behavior problems for patents of healthy children. The clinical implications of poor parental cognitions and directions for future research are highlighted.     

Delayed or Forgone Care and Dissatisfaction with Care for Children with Special Health Care Needs: The Role of Perceived Cultural Competency of Health Care Providers

To better understand if reported delayed/forgone care and dissatisfaction with care for children with special health care needs (CSHCN) are associated with the parent’s perception of health care providers’ cultural competency. National survey. Fifty United States and the District of Columbia yielding 750 families per state and District of Columbia with CSHCN ≤ 18 years participated in the 2005–06 National Survey of CSHCN. Outcome measures were delayed/forgone care in the past 12 months (yes or no) and dissatisfaction (very dissatisfied to very satisfied). Demographic/clinical characteristics and the parent’s perception of health care providers’ cultural competency were examined. Perception of cultural competency was defined by questions related to time spent with child, respect for family values, listening to the family, sense of partnership, and information provided. Delayed/forgone care and dissatisfaction with care were associated with perceived health care provider cultural competency. Parents whose children were older, whose children’s condition affected their ability to do things, whose interviews were not conducted in English, and were from certain racial and ethnic groups reported more delayed or forgone care and were more dissatisfied with their children’s health care. Delayed/forgone care and dissatisfaction with care were associated with perceived cultural competency of health care providers. This did not appear to differ consistently by racial or ethnic group. Further research using more refined instruments and longitudinal designs is needed to assess the effects of health care providers’ cultural competency and other cultural factors on the delayed/forgone care for CSHCN and on the dissatisfaction with care of parents with CSHCN.     

Pre-diagnostic and Diagnostic Stages of Autism Spectrum Disorder: A Parent Perspective

This study examined the experiences of parents receiving an autism spectrum disorder (ASD) diagnosis for their child. Mixed methods were used to give a detailed account of the sequence of events, parents’ experiences and actions associated with the ASD diagnosis. Parents waited nearly two and a half years (mean = 28.72 months) before receiving the ASD diagnosis. Parents with lower general and autism-specific social support, poorer physical health functioning and children with more severe communication problems reported longer wait times. Surprisingly, parents reported more positive than negative experiences from receiving the diagnosis. Paediatricians and psychologists were consulted most frequently; paediatricians and general physicians were rated most likely to neglect early ASD symptoms and least likely to make appropriate referrals. Qualitative analyses revealed seven themes describing the parent experience during the diagnostic process: “heightened awareness”, “initial search”, “dissatisfaction with medical or associated processionals”, “long process/delay”, “feeling uninformed”, “parent psychological and relational experiences” and “diagnosis goals”. A set of commonly experienced stages characterising the process of obtaining a diagnosis were identified and formulated into a six-stage model of diagnostic delay adapted from the patients’ health-seeking model.