Parent-Reported Quality of Life of Children With Cerebral Palsy in Europe

OBJECTIVE. The goal was to determine whether the type and severity of the child's impairments and the family's psychosocial, social, and economic characteristics influence parent-reported child quality of life across the spectrum of severity of cerebral palsy.

METHODS. Our population-based, cross-sectional survey conducted in 2004 to 2005 involved 818 children with cerebral palsy, 8 to 12 years of age, from 7 countries (9 regions) in Europe. Child quality of life was assessed through parent reports by using the Kidscreen questionnaire, and data were analyzed separately for each of its 10 domains.

RESULTS. The parental response rates were >93% for all domains except one. Gross motor function and IQ level were found to be associated independently with quality of life in most domains. However, greater severity of impairment was not always associated with poorer quality of life; in the moods and emotions, self-perception, social acceptance, and school environment domains, less severely impaired children were more likely to have poor quality of life. Pain was associated with poor quality of life in the physical and psychological well-being and self-perception domains. Parents with higher levels of stress were more likely to report poor quality of life in all domains, which suggests that factors other than the severity of the child's impairment may influence the way in which parents report quality of life.

CONCLUSIONS. The parent-reported quality of life for children with cerebral palsy is associated strongly with impairment. However, depending on the areas of life, the most severely impaired children (in terms of motor functioning or intellectual ability) do not always have the poorest quality of life.

Reliability and Validity of the Child Health QuestionnairePF-50 for European Children with Cerebral Palsy

Objective: To evaluate the psychometric performance of the Child Health Questionnaire (CHQ) in children with cerebral palsy (CP).
Method: 818 parents of children with CP, aged 8–12 from nine regions of Europe completed the CHQ (parent form 50 items). Functional abilities were classified using the five-level Gross Motor Function Classification Scheme (Levels I–III as ambulant; Level IV–V as nonambulant CP).
Results: Ceiling effects were observed for a number of subscales and summary scores across all Gross Motor Function Classification System levels, whilst floor effects occurred only in the physical functioning scale (Level V CP). Reliability was satisfactory overall. Confirmatory factor analysis (CFA) revealed a seven-factor structure for the total sample of children with CP but with different factor structures for ambulant and nonambulant children.
Conclusion: The CHQ has limited applicability in children with CP, although with judicious use of certain domains for ambulant and nonambulant children can provide useful and comparable data about child health status for descriptive purposes.

Psychological problems in children with hemiplegia: a European multicentre survey

Objective: To describe the prevalence and determinants of psychological problems in European children with hemiplegia. Design: Cross-sectional survey. Setting: Home visits in nine European regions by research associates who administered standard questionnaires to parents. Patients: 279 children with hemiplegia aged 8–12 years were recruited from population-based case registers. Outcome measure: Strengths and Difficulties Questionnaire comprising emotion, conduct, hyperactivity, peer problems and prosocial domains. An “impact score” (IS) measures the social and psychological impact of the child’s difficulties. Results: Children with hemiplegia had higher mean scores on the total difficulties score (TDS) compared with a normative sample (p<0.001). 48% and 57% of children, respectively, had borderline–abnormal TDS and IS. Significant, independent associations were observed between intellectual impairment and an increased risk for hyperactivity (odds ratio; OR 8.4, 95% CI 3.4 to 20.8), peer problems (OR 3.1, 95% CI 1.7 to 5.5), psychological and social impact (OR 3.0, 95% CI 1.6 to 5.6) when children with an intellectual quotient (IQ) <50 were compared with those with an IQ >70. Boys had an increased risk for conduct (OR 2.1, 95% CI 1.2 to 3.7) and hyperactivity disorders (OR 2.5, 95% CI 1.4 to 4.6). Poor self-esteem was associated with an increased risk for peer problems (OR 5.8, 95% CI 2.5 to 13.4) and poor prosocial skills (OR 7.5, 95% CI 2.4 to 23.2) compared with those with high self-esteem. Other determinants of psychological adjustment were impaired communication, severe pain and living with a single parent. Conclusions: Many of the psychological problems identified are amenable to treatment. Special attention should be given to those at highest risk of developing psychological difficulties.

Psychological status of patients referred for orthognathic correction of skeletal II and III discrepancies

Objective: To establish the extent of psychological problems among patients who require orthognathic treatment. Materials and Methods: Five aspects of psychological functioning were assessed for 162 patients who required orthognathic treatment and compared with 157 control subjects.

Results: Analysis of variance did not detect any significant difference in the five psychological scores recorded for the skeletal II, skeletal III, and control groups. The proportion of subjects with one or more psychological measure beyond the normal range was 27% for skeletal II subjects, 25% for skeletal III subjects, and 26% for control subjects. One skeletal II subject (1.5%), three skeletal III subjects (3%), and five control subjects (3%) required referral for psychological counseling.

Conclusions: The orthognathic patients did not differ significantly from the control subjects in their psychological status. © 2010 by The EH Angle Education and Research Foundation, Inc.

The Impact of Engagement Processes on the First Appointment Attendance Rate at a Regional Outpatient Psychological Trauma Service.

The effectiveness of simple measures to increase attendance at first appointments is briefly reviewed. The Family Trauma Centre’s remit and pre-study engagement process are described. The perceived idiosyncratic aspects of inviting people suffering from psychological trauma to attend a clinical service are noted as contributory factors in initially tolerating a high first appointment DNA rate. Three new initial engagement processes are then described and results of their application to 30 referrals in total are presented. The overwhelming finding is that paying close attention to any of the three initial engagement processes significantly increases first appointment attendance. Based on these findings the Centre developed a new initial engagement protocol.. The principle that services should pay more attention to their engagement processes than on the characteristics of their client groups when seeking to reduce first appointment DNA rates is supported.

Internet Use and Psychological Well-being among 10-year-old and 11-year-old Children

This paper uses data from the 2009 Kids’ Life and Times Survey, involving 3657 children aged 10 or 11 years old in Northern Ireland. The survey indicated high levels of use of Internet applications, including social-networking sites and online games. Using the KIDSCREEN-27 instrument, the data indicate that the use of social-networking sites and online games is related to poorer psychological well-being among girls, but not boys. Boys and girls who experience “cyberbullying” have poorer psychological well-being. This association between psychological well-being and some Internet applications merits more attention in future research and policy development.

Young children's food brand knowledge. Early development and associations with television viewing and parent's diet

Brand knowledge is a prerequisite of children's requests and choices for branded foods. We explored the development of young children's brand knowledge of foods highly advertised on television - both healthy and less healthy. Participants were 172 children aged 3-5 years in diverse socio-economic settings, from two jurisdictions on the island of Ireland with different regulatory environments. Results indicated that food brand knowledge (i) did not differ across jurisdictions; (ii) increased significantly between 3 and 4 years; and (iii) children had significantly greater knowledge of unhealthy food brands, compared with similarly advertised healthy brands. In addition, (iv) children's healthy food brand knowledge was not related to their television viewing, their mother's education, or parent or child eating. However, (v) unhealthy brand knowledge was significantly related to all these factors, although only parent eating and children's age were independent predictors. Findings indicate that effects of food marketing for unhealthy foods take place through routes other than television advertising alone, and are present before pre-schoolers develop the concept of healthy eating. Implications are that marketing restrictions of unhealthy foods should extend beyond television advertising; and that family-focused obesity prevention programmes should begin before children are 3 years of age.

Use of the child health utility and strengths and difficulties outcome measures in economic evaluations of school-based interventions: data from a cluster-randomised controlled trial in Northern Ireland

Background There is growing evidence linking early social and emotional wellbeing to later academic performance and various health outcomes including mental health. An economic evaluation was designed alongside the Roots of Empathy cluster-randomised trial evaluation, which is a school-based intervention for improving pupils’ social and emotional wellbeing. Exploration of the relevance of the Strengths and Diffi culties Questionnaire (SDQ) and Child Health Utility 9D (CHU9D) in school-based health economic evaluations is warranted. The SDQ is a behavioural screening questionnaire for 4–17-year-old children, consisting of a total diffi culties score, and also prosocial behaviour,
which aims to identify positive aspects of behaviour. The CHU9D is a generic preference-based health-related quality of life instrument for 7–17-year-old children.

Assessing elements of a family approach to reduce adolescent drinking frequency: parent-adolescent relationship, knowledge management, and keeping secrets

AIMS: To estimate 1) the associations between parent-adolescent relationship, parental knowledge and subsequent adolescent drinking frequency and 2) the influence of alcohol use on parental knowledge.

DESIGN: Path analysis of school based cohort study with annual surveys SETTING: Post primary schools from urban and intermediate/rural areas in Northern Ireland PARTICIPANTS: 4,937 post primary school students aged around 11 years in 2000 followed until around age 16 in 2005.

MEASUREMENTS: Pupil reported measures of: frequency of alcohol use; parental-child relationship quality; sub-dimensions of parental monitoring: parental control, parental solicitation, child disclosure and child secrecy.

FINDINGS: Higher levels of parental control (Ordinal logistic OR 0.86 95% CI 0.78, 0.95) and lower levels of child secrecy (OR 0.83 95% CI 0.75 0.92) were associated with less frequent alcohol use subsequently. Parental solicitation and parent-child relationship quality were not associated with drinking frequency. Weekly alcohol drinking was associated with higher subsequent secrecy (Beta -0.42 95% CI -0.53, -0.32) and lower parental control (Beta -0.15 95% CI -0.26, -0.04). Secrecy was more strongly predictive of alcohol use at younger compared with older ages (P=0.02), and alcohol use was less strongly associated with parental control among families with poorer relationships (P=0.04).

CONCLUSIONS: Adolescent alcohol use appears to increase as parental control decreases and child secrecy increases. Greater parental control is associated with less frequent adolescent drinking subsequently, while parent-child attachment and parental solicitation have little influence on alcohol use. 

Bullying Experiences of Child and Adolescent Mental Health Service-users: A Pilot Survey

Victims and perpetrators of bullying experience a variety of psychological problems. The aim of the current pilot study was to explore the bullying experiences of Child and Adolescent Mental Health (CAMHS) service-users. The investigation was conducted as a cross-sectional survey at a community-based specialist CAMH service. A modified version of the Revised Olweus Bully/Victim Questionnaire was used to assess bullying experiences. Participants comprised an opportunity sample of 26 adolescent male and female CAMH service-users. Results indicated that 61.5% of participants reported being bullied. Clear links were made between being bullied and the mental health of participants, with 62.5% of bullied participants reporting that being bullied was a ‘‘moderately importantvery important’’ reason for their attendance at the CAMH service. Therapists at the CAMH service made appropriate enquiries about young people being victims of bullying, but more enquiries could be made about young peoples’ experiences as perpetrators. Service-users favoured therapist-led bullying interventions such as assertiveness training, therapy and/or psychological coping strategies, and social skills training. These findings underline the need for ecological approaches to dealing with bullying, and suggest that CAMH services could play an important role in establishing and supporting such interventions.

The U.N. convention on the rights of the child: Relevance and application to pediatric clinical bioethics

This article provides an overview of the relevance and import of the U.N. Convention on the Rights of the Child (CRC) to child health practice and pediatric bioethics. We discuss the four general principles of the CRC that apply to the implementation of all rights contained in the document, the right to health articulated in Article 24, and the important position ascribed to parents in fulfilling the rights of their children. We then examine how the CRC is implemented and monitored in law and practice. The CRC and associated principles of child rights provide strategies for rights-based approaches to clinical practice and health systems, as well as to policy design, professional training, and health services research. In light of the relevance of the CRC and principles of child rights to children’s health and child health practice, it follows that there is an intersection between child rights and pediatric bioethics. Pediatric bioethicists and child rights advocates should work together to define this intersection in all domains of pediatric practice.

The Growth, Learning and Development Study: Summary of Research, Findings and Recommendations.

The Growth, Learning and Development (GLAD) study aimed to examine how a broad range of factors influence child weight during the first year of life. Assessments were undertaken within a multidisciplinary team framework. The sample was drawn from the community and data collection was undertaken in the four Greater Belfast Trusts. Twohundred and thirty-four families took part, each receiving a total of five home visits during which physical growth, oral-motor skills and development were assessed. Psychosocial evaluation examined parent-child interaction, feeding and other parental and child characteristics using quantitative and observational techniques. This paper outlines the main findings and recommendations from the GLAD study.

Health status of children with cerebral palsy living in Europe: a multi-centre study

Aim The aim of this report is to describe the health status of 8–12-year-old children with cerebral palsy (CP) of all severities in Europe using the Child Health Questionnaire (CHQ).

Method A total of 818 children with CP from nine centres in defined geographical areas participated. CP type, gross and fine motor function, additional impairments were classified and family data were obtained. The CHQ was used to measure the parent's perception of their child's physical (PHY) and psychosocial (PSY) health.

Results PHY scores were lower than the reference samples with a median of 46. The severity of gross motor function influenced the CHQ scores significantly in the PHY scale with the lowest scores for children with least gross motor function. There were significant differences between the CP types in PHY with the higher scores for children with unilateral spastic and the lowest scores for children with bilateral spastic and dyskinetic CP type. Fine motor function severity significantly affected both the PHY and PSY scales. The severity of intellectual impairment was significantly associated with CHQ scores in most dimensions with higher scores for higher IQ level in PHY and PSY. Children with seizures during the last year had a significantly lower health compared with children without seizures. The results of the multivariate regression analyses (forward stepwise regression) of CHQ scores on CP subtype, gross and fine motor function, cognitive function, additional impairments, seizures, parental education and employment revealed gross motor function, cognitive level and type of school attended were significant prognostic factors.

Conclusion This report is based on the largest sample to date of children with CP. Health status as measured using the CHQ was affected in all children and was highly variable. Gross motor function level correlates with health from the PHY well-being perspective but the PSY and emotional aspects do not appear to follow the same pattern.