Predictors of participation of adolescents with cerebral palsy: A European multi-centre longitudinal study.

We investigated whether childhood factors that are amenable to intervention (parenting stress, child psychological problems and pain) predicted participation in daily activities and social roles of adolescents with cerebral palsy (CP). We randomly selected 1174 children aged 8-12 years from eight population-based registers of children with CP in six European countries; 743 (63%) agreed to participate. One further region recruited 75 children from multiple sources.

Self-reported quality of life of adolescents with cerebral palsy: a cross-sectional and longitudinal analysis.

Background: Children with cerebral palsy who can self-report have similar quality of life (QoL) to their able-bodied peers. Is this similarity also found in adolescence? We examined how self-reported QoL of adolescents with cerebral palsy varies with impairment and compares with the general population, and how factors in childhood predict adolescent QoL.

Methods: We report QoL outcomes in a longitudinal follow-up and cross-sectional analysis of individuals included in the SPARCLE1 (childhood) and SPARCLE2 (adolescent) studies.

Association between participation in life situations of children with cerebral palsy and their physical, social, and attitudinal environment: a cross-sectional multicenter European study.

Objective: To evaluate how participation of children with cerebral palsy (CP) varied with their environment.

Design: Home visits to children. Administration of Assessment of Life Habits and European Child Environment Questionnaires.

Predictors of drop-out in a multi-centre longitudinal study of participation and quality of life of children with cerebral palsy.

Background: SPARCLE is a study across nine European regions which examines the predictors of participation and quality of life of children with cerebral palsy. Children and their families were initially interviewed in 2004/2005 when the children were aged 8-12 years (SPARCLE1); they were approached again in 2009/2010 at age 13-17 years (SPARCLE2). The objective of this report is to assess potential for bias due to family non-response in SPARCLE2.

Experiences of fathering a baby admitted to neonatal intensive care: a critical gender analysis.

More fathers than ever before attend at the birth of their child and, internationally, there is a palpable pressure on maternity and neonatal services to include and engage with fathers. It is, thus, more important than ever to understand how fathers experience reproductive and neonatal health services and to understand how fathers can be successfully accommodated in these environments alongside their partners. In this paper we advance a theoretical framework for re-thinking fatherhood and health services approaches to fatherhood based on Critical Studies on Men (CSM).

Comparing the needs of families of children dying from malignant and non-malignant disease: an in-depth qualitative study.

Objective: To examine the experiences of bereaved parents concerning the care provided to children who died from cancer compared to those who died from a non-malignant condition.

Design: An in-depth qualitative study with bereaved parents of children who died as a result of a life-limiting diagnosis, recruited through two regional centres.

Results: Although parents' accounts displayed commonalities, key differences were discernible.

Recruitment bias and characteristics of participants with severe cerebral palsy in a cross-sectional survey.

Aim: This article is a report of recruitment bias in a sample of 5-25-year-old patients with severe cerebral palsy.

Background: The way in which study participants are recruited into research can be a source of bias.

Method: A cross-sectional survey of 5-25-year-old patients with severe cerebral palsy using standardized questionnaires with parents/carers was undertaken in 2007/2008.

Parenting stress and children with cerebral palsy: a European cross-sectional survey.

Aim: The aim of this study was to describe stress in the parents of children with cerebral palsy and investigate associations with very high stress.

Method: A cross-sectional survey was conducted of parents of 818 children aged 8 to 12 years from nine regions in Europe. Families were eligible to participate if they were living in one of the specified geographic areas.

Living through the death of a child: a qualitative study of bereaved parents' experiences.

Design: Cross-sectional qualitative study.

Data Sources: Interviews with purposeful sample of 25 recently bereaved parents.

Methods: Semi-structured in-depth interviews.

The health of children and young people with cerebral palsy: a longitudinal, population-based study.

Background: Cerebral palsy (CP) is a chronic condition about which little is known in relation to the long term stability of and factors influencing health.

Objectives: To describe the health status of 4-17 year olds with ambulant CP, compare with the general population and identify factors predicting change in health over time.

Design: A longitudinal, clinical survey.

Age-related changes in energy efficiency of gait, activity, and participation in children with cerebral palsy.

Aim: The aim of this study was to use a prospective longitudinal study to describe age-related trends in energy efficiency during gait, activity, and participation in ambulatory children with cerebral palsy (CP).

Method: Gross Motor Function Measure (GMFM), Paediatric Evaluation of Disability Inventory (PEDI), and Lifestyle Assessment Questionnaire-Cerebral Palsy (LAQ-CP) scores, and energy efficiency (oxygen cost) during gait were assessed in representative sample of 184 children (112 male; 72 female; mean age 10y 9mo; range 4-16y) with CP. Ninety-four children had unilateral spastic CP, 84 bilateral spastic CP, and six had other forms of CP.

Oromotor dysfunction and communication impairments in children with cerebral palsy: a register study.

Aim: to report the prevalence, clinical associations, and trends over time of oromotor dysfunction and communication impairments in children with cerebral palsy (CP).

Method: multiple sources of ascertainment were used and children followed up with a standardized assessment including motor speech problems, swallowing/chewing difficulties, excessive drooling, and communication impairments at age 5 years.

Results: a total of 1357 children born between 1980 and 2001 were studied (781 males, 576 females; median age 5y 11mo, interquartile range 3-9y; unilateral spastic CP, n=447; bilateral spastic CP, n=496; other, n=112; Gross Motor Function Classification System [GMFCS] level: I, 181; II, 563; III, 123; IV, 82; IV, 276).

The needs of children and young people with cerebral palsy.

Because cerebral palsy (CP) is a sufficiently common condition of childhood and adolescence, the number and needs of these children and young people with cerebral palsy are monitored by centres across the UK (Surman et al 2006) and Europe (Surveillance of Cerebral Palsy in Europe 2000). This article describes the epidemiology of CP in childhood using data derived from the Northern Ireland Cerebral Palsy Register, which is one of the longest running CP registers in Europe. The findings presented here are similar to, and representative of, the epidemiology of CP in the western world (Dolk et al 2006).

Access of children with cerebral palsy to the physical, social and attitudinal environment they need: a cross-sectional European study.

Purpose: The UN Convention on the Rights of Persons with Disabilities requires states 'to ensure to persons with disabilities access, on an equal basis with others, to the physical environment, transportation, information and communications.' We explored whether this convention was respected for disabled children in Europe.

Method: One thousand one-hundred and seventy-four children aged 8-12 years were randomly selected from population-based registers of children with cerebral palsy in eight European regions.

Socio-economic inequalities in cerebral palsy prevalence in the United Kingdom: a register-based study.

Evidence is unclear as to whether there is a socio-economic gradient in cerebral palsy (CP) prevalence beyond what would be expected from the socio-economic gradient for low birthweight, a strong risk factor for CP. We conducted a population-based study in five regions of the UK with CP registers, to investigate the relationship between CP prevalence and socio-economic deprivation, and how it varies by region, by birthweight and by severity and type of CP. The total study population was 1 657 569 livebirths, born between 1984 and 1997.

To what extent do children with cerebral palsy participate in everyday life situations?

The aims of the study are to describe participation of children with cerebral palsy in everyday life situations, to investigate the relationship between participation (primary outcome variable) with child and parent characteristics (independent variables) and to compare the frequency of participation (secondary outcome variable) of children with cerebral palsy with children without disabilities. A cross-sectional survey of parents of children with cerebral palsy in Northern Ireland was undertaken in families' homes using standard questionnaires. Children with cerebral palsy born between 31/8/1991 and 1/4/1997 were identified from a case register of people with the condition.

Children with cerebral palsy: severity and trends over time.

Increasingly, more very-low-birthweight infants in the developed world are now expected to survive the neonatal period than was previously the case. There are concerns that there may be a related increase in the number of infants developing severe sensorimotor impairments. Pooled data from five registers contributing to the UK Network of Cerebral Palsy Registers, Surveys and Databases were used to identify patterns of motor impairment in relation to additional impairments and to birthweight, and to assess whether prevalence of cerebral palsy (CP) by birthweight and by severity of motor impairment had changed over time.

The health of children with cerebral palsy and stress in their parents.

Title: The health of children with cerebral palsy and stress in their parents.

Aim: This paper is a report of a study conducted to describe the health of children with cerebral palsy and investigate predictors of stress in their parents.

Background: Children with severe cerebral palsy tend to have poorer health than their able-bodied peers, and their parents are more likely to be stressed and have poorer health.

Participation in life situations of 8-12 year old children with cerebral palsy: cross sectional European study.

Objectives: To evaluate how involvement in life situations (participation) in children with cerebral palsy varies with type and severity of impairment and to investigate geographical variation in participation.

Design: Cross sectional study. Trained interviewers visited parents of children with cerebral palsy; multilevel multivariable regression related participation to impairments, pain, and sociodemographic characteristics.

Experiences of fathers of babies in intensive care.

Around 2,000 sick or premature infants are admitted each year to intensive care units in Northern Ireland--8.1 per cent of the live birth population. Studies show that having a premature or 'high-risk' infant is stressful for both parents, yet most research focuses on the mothers' experiences.

Frequency of participation of 8-12-year-old children with cerebral palsy: a multi-centre cross-sectional European study.

Participation in home, school and community is important for all children; and little is known about the frequency of participation of disabled children. Frequency of participation is a valuable outcome measure for evaluating habilitation programmes for disabled children and for planning social and health services. We investigated how frequency of participation varied between children with cerebral palsy and the general population; and examined variation across countries to understand better how the environmental factors such as legislation, public attitudes and regulation in different countries might influence participation.

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).

Energy efficiency in gait, activity, participation, and health status in children with cerebral palsy.

The aim of the study was to establish if a relationship exists between the energy efficiency of gait, and measures of activity limitation, participation restriction, and health status in a representative sample of children with cerebral palsy (CP). Secondary aims were to investigate potential differences between clinical subtypes and gross motor classification, and to explore other relationships between the measures under investigation. A longitudinal study of a representative sample of 184 children with ambulant CP was conducted (112 males, 72 females; 94 had unilateral spastic C P, 84 had bilateral spastic C P, and six had non-spastic forms; age range 4-17 y; Gross Motor Function Classification System Level I, n=57; Level II, n=91; Level III, n=22; and Level IV, n=14); energy efficiency (oxygen cost) during gait, activity limitation, participation restriction, and health status were recorded.

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.

Psychological problems in children with cerebral palsy: a cross-sectional European study.

Objectives: To describe psychological symptoms in 8-12-year-old children with cerebral palsy; to investigate predictors of these symptoms and their impact on the child and family.

Design: A cross-sectional multi-centre survey.

Participants: Eight hundred and eighteen children with cerebral palsy, aged 8-12 years, identified from population-based registers of cerebral palsy in eight European regions and from multiple sources in one further region.