Jackie Parkes

• PhD BNurs
• Queen's University Belfast

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 si...

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...

Objective To determine the prevalence and associations of self- and parent-reported pain in young people with cerebral palsy (CP). Design and setting Cross-sectional questionnaire survey conducted at home visits in nine regions in seven European countries. Participants were 13 to 17-year-olds (n=667) drawn from population CP registers in eight reg...

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. Structural equation modeling of putative associations between specific domains of participation and environment, w...

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). T...

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. 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. Although parents' accounts...

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 successfu...

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

This article is a report of recruitment bias in a sample of 5-25-year-old patients with severe cerebral palsy. The way in which study participants are recruited into research can be a source of bias. A cross-sectional survey of 5-25-year-old patients with severe cerebral palsy using standardized questionnaires with parents/carers was undertaken in...

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 longitudi...

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). Gross Motor Function Measure (GMFM), Paediatric Evaluation of Disability Inventory (PEDI), and Lifestyle Assessment Questionnaire-Cerebral Pal...

Cerebral palsy is the most common cause of physical disability in childhood and half of these children will have an intellectual impairment. This article reports on the quality of life of children with cerebral palsy and explores the impact of intellectual impairment. Learning disability nurses have a critical role to play in improving the quality...

to report the prevalence, clinical associations, and trends over time of oromotor dysfunction and communication impairments in children with cerebral palsy (CP). multiple sources of ascertainment were used and children followed up with a standardized assessment including motor speech problems, swallowing/chewing difficulties, excessive drooling, an...

Cerebral palsy (CP) is a leading cause of physical disability in childhood with evidence that 90% of children with the condition sustain damage or malformation to their developing brain during the antenatal period. With half of all cases of children with CP being born prematurely many need extra help and support in the neonatal period. The aims of...

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. One thousand one-hundred and seve...

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 usi...

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 prevalen...

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 ce...

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 P...

The health of children with cerebral palsy and stress in their parents. 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. Children with severe cerebral palsy tend to have poorer health than their able-bodied peers, and their parents are more like...

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. A literature review was undertaken in preparation for a...

To describe the prevalence and determinants of psychological problems in European children with hemiplegia. Cross-sectional survey. 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 register...

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. Cross sectional study. Trained interviewers visited parents of children with cerebral palsy; multilevel multivariable regression related participation...

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. A literature review was undertaken in preparation for...

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). 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 classifie...

Cerebral palsy (CP) refers to a collection of motor impairments which result in abnormal posture and movement following an insult or damage to the developing brain. Psychological adjustment in children with CP is under researched with little population-based or longitudinal data, but there is sufficient evidence to suggest that children with CP are...

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...

To evaluate the psychometric performance of the Child Health Questionnaire (CHQ) in children with cerebral palsy (CP). 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...

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. A cross-sectional multi-centre survey. Eight hundred and eighteen children with cerebral palsy, aged 8-12 years, identified from population-based registers of cerebral palsy in eight...

This paper is a presentation of a study protocol to establish the prevalence of orthopaedic problems (hip dislocation, pelvic obliquity, spinal deformity and contractures) and their impact on pain, function, participation and health in a population of children and young people with severe cerebral palsy. Cerebral palsy is the commonest cause of mot...

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 cl...

Purpose: To compare visual data held by the Northern Ireland Cerebral Palsy Register (NICPR) with that collected prospectively as part of a survey of visual function in cerebral palsy (CP) by an optometrist. Methods: 90 subjects with CP (aged 4–15 years) were recruited via the NICPR to a population‐based study of visual function in CP. Objective me...

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. Our population-based, cross-sectional survey conducted in 2004 to 2005 involved 818 children with ce...

The differences between child self-reports and parent proxy reports of quality of life in a large population of children with cerebral palsy were studied. We examined whether child characteristics, severity of impairment, socioeconomic factors, and parental stress were associated with parent proxy reports being respectively higher or lower than chi...

To review the psychometric performance of the Child Health Questionnaire (CHQ) in samples of children with cerebral palsy (CP). Four search terms were applied to five databases in a search for papers published between 1993 and January 2007. A total of 13 papers were identified, providing data on 1229 unique children aged 2-18 years old. Three studi...

Little is known about the quality of life (QoL) of disabled children. We describe self-reported QoL of children with cerebral palsy, factors that influence it, and how it compares with QoL of the general population. 1174 children aged 8-12 years were randomly selected from eight population-based registers of children with cerebral palsy in six Euro...

Gross Motor Function Classification System (GMFCS) level was reported by three independent assessors in a population of children with cerebral palsy (CP) aged between 4 and 18 years (n=184; 112 males, 72 females; mean age 10y 10mo [SD 3y 7mo]). A software algorithm also provided a computed GMFCS level from a regional CP registry. Participants had c...

The purpose of this analysis was to assess recruitment bias in a population-based study of locomotor ability in children with cerebral palsy. A population-based case register was used as a sampling frame and was considered a highly ascertained record of children with the condition. A twin track approach to recruitment for the Locomotor Study was ad...

We describe trends in the prevalence of cerebral palsy (CP) by birthweight group, and in the severity of motor impairments and presence of associated intellectual impairment, in Northern Ireland from 1981 to 1997 (n=909; 510 males, 399 females; total population 415,936 live births) using data from a population-based register of CP. Children with su...

Cerebral palsy (CP) is a relatively rare condition with enormous social and financial impact. Information about CP is not routinely collected in the United Kingdom. We have pooled non-identifiable data from the five currently active UK CP registers to form the UKCP database: birth years 1960-1997. This article describes the rationale behind this co...

To determine the prevalence, nature, and degree of accommodative dysfunction among children with different types and severities of cerebral palsy (CP) in Northern Ireland. Ninety subjects with CP (aged 4-15 years) were recruited through the Northern Ireland CP Register (NICPR). Modified Nott dynamic retinoscopy was used to measure lag and lead of a...

SPARCLE is a cross-sectional survey in nine European regions, examining the relationship of the environment of children with cerebral palsy to their participation and quality of life. The objective of this report is to assess data quality, in particular heterogeneity between regions, family and item non-response and potential for bias. 1,174 childr...

BACKGROUND: SPARCLE is a cross-sectional survey in nine European regions, examining the relationship of the environment of children with cerebral palsy to their participation and quality of life. The objective of this report is to assess data quality, in particular heterogeneity between regions, family and item non-response and potential for bias....

The concurrent validity of a 1 minute walk test at a child's maximum walking speed was assessed in children with bilateral spastic cerebral palsy (BSCP). The distance covered during the 1 minute walk test was compared with the children's gross motor function as assessed by the Gross Motor Function Measure (GMFM). Twenty-four male and 10 female chil...

The concurrent validity of a 1 minute walk test at a child's maximum walking speed was assessed in children with bilateral spastic cerebral palsy (BSCP). The distance covered during the 1 minute walk test was compared with the children's gross motor function as assessed by the Gross Motor Function Measure (GMFM). Twenty-four male and 10 female chil...

To investigate factors that influence the frequency of physiotherapy currently used by a population of children with moderate to severe cerebral palsy (CP). A survey using a postal questionnaire was sent to 212 parents of children with moderate to severe CP. The families were identified from a geographically defined case register of children with C...

To describe the use of physiotherapy services and alternative therapies by a population of children with moderate to severe cerebral palsy (CP). Descriptive cross-sectional survey. A total of 212 parents of children aged 4-14 years with moderate to severe CP were identified from the Northern Ireland Cerebral Palsy Register (NICPR) and a random subs...

This paper describes the method of compilation of the Northern Ireland Cerebral Palsy Register (NICPR) and outlines the epidemiology of cerebral palsy (CP) in Northern Ireland in 1981--93 based on an analysis of 784 cases. Multiple and overlapping sources of notification were used to compile the NICPR. Each case was followed up with a standardised...

This paper describes the method of compilation of the Northern Ireland Cerebral Palsy Register (NICPR) and outlines the epidemiology of cerebral palsy (CP) in Northern Ireland in 1981-93 based on an analysis of 784 cases. Multiple and overlapping sources of notification were used to compile the NICPR. Each case was followed up with a standardised a...

This paper assesses the usefulness of the Child Health Computing System as a source of information about children with cerebral palsy. A comparative survey of information held on the Child Health Computing System (CHCS) and the Northern Ireland Cerebral Palsy Register (NICPR) in one Health and Social Services Board in Northern Ireland was carried o...