Hardship, dedication and investment: an exploration of Irish mothers commitment to communicating with their children with cerebral palsy.

This qualitative study investigated the experiences of mothers who have a child with communication difficulties resulting from cerebral palsy (CP). There is a dearth of information about parents' experiences of having a child with CP and communication difficulties. Three participants, whose children had moderate or severe CP and communication difficulties, were recruited from a voluntary organization. Participants were interviewed using an in-depth, semi-structured interview guide. Interviews were audio-recorded, then transcribed and subsequently analysed using Grounded Theory methods. Five main themes emerged, combining to form the core category of mothers dedicating their attention to their children. The information gleaned from this study could have important implications for nurses involved in facilitating communication, including speech and language therapists, occupational therapists and registered nurses. By becoming more aware of the experiences of parents with a child with CP and communication disorders, nurses may be better able to plan and implement therapy and also support communication aims. The study concludes with a discussion of further research avenues, suggesting that a study investigating the experiences of parents of children with other types of physical disabilities affecting communication should be conducted to determine the similarities and differences of parents of children with other kinds of disability. A similar study with a larger sample could be conducted to validate the findings of the current study.

Dyskinetic cerebral palsy in Europe: trends in prevalence and severity.

OBJECTIVE: To describe the trends for and severity of dyskinetic cerebral palsy in a European collaborative study between cerebral palsy registers, the Surveillance of Cerebral Palsy in Europe (SCPE). METHODS: The prevalence of dyskinetic cerebral palsy was calculated in children born in 1976-1996. Walking ability, accompanying impairments and perinatal adverse events were analysed. RESULTS: 578 children had dyskinetic cerebral palsy, of whom 70% were born at term. The prevalence per 1000 live births increased from 0.08 in the 1970s to 0.14 in the 1990s. For the 386 children (70%) with a birth weight of > or =2500 g, the increase was significant (0.05 to 0.12). There was a concurrent decrease in neonatal mortality among children with a birth weight of > or =2500 g. Overall, 16% of the children walked without aids, 24% with aids and 59% needed a wheelchair. Severe learning disability was present in 52%, epilepsy in 51% and severe visual and hearing impairment in 19% and 6%, respectively. Accompanying impairments increased with motor severity. In children born in 1991-1996, perinatal adverse events, that is an Apgar score of <5 at 5 min and convulsions before 72 h, had occurred more frequently compared with children with bilateral spastic cerebral palsy (BSCP, n = 4746). Children with dyskinetic cerebral palsy had more severe cognitive and motor impairments than children with BSCP. CONCLUSIONS: The prevalence of dyskinetic cerebral palsy appears to have increased in children with a normal birth weight. They have frequently experienced perinatal adverse events. Most children have a severe motor impairment and several accompanying impairments.

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.

Discussion groups with parents of children with cerebral palsy in Europe designed to assist development of a relevant measure of environment.

BACKGROUND: An instrument to measure environmental factors relevant to physically impaired children is being developed in a European context. Preliminary work in England had identified some potentially important themes. Further inquiry was needed to identify issues important in other European countries. OBJECTIVE: To inform the content of a questionnaire relevant to the environment of children with cerebral palsy (CP) living in Europe. DESIGN: A qualitative study using discussion groups. PARTICIPANTS: Parents of 28 children with CP from five countries; Denmark, France, Italy, Ireland and Sweden. One discussion group was held in each country with an average of seven parents per group. RESULTS: The four themes identified in the preliminary work done in England were strongly confirmed across Europe - namely: Mobility, Transport, Support by and to parents, and Attitudes of individuals and institutions towards children. Two new themes identified in the discussion groups were Bureaucracy and Access to information about rights and entitlements. CONCLUSIONS: The environmental factors that cause concern to parents of children with CP are similar across Europe. A prototype environmental questionnaire has been developed based on these findings. The environmental questionnaire is in use in a study in nine European centres.

Case gender and severity in cerebral palsy varies with intrauterine growth.

BACKGROUND: There is an unexplained excess of cerebral palsy among male babies. There is also variation in the proportion of more severe cases by birth weight. It has recently been shown that the rate of cerebral palsy increases as intrauterine size deviates up or down from an optimum about one standard deviation heavier than population mean weight-for-gestation. AIMS: To determine whether the gender ratio or the severity of cases also varies with intrauterine size. METHODS: A total of 3454 cases of cerebral palsy among single births between 1976 and 1990 with sufficient data to assign case severity (based on intellectual impairment and walking ability) and to compare weight-for-gestation at birth to sex specific fetal growth standards, were aggregated from nine separate registers in five European countries. RESULTS: The greater the degree to which growth deviates either up or down from optimal weight-for-gestation at birth, the higher is the rate of cerebral palsy, the larger is the proportion of male cases, and the more severe is the functional disability. Compared to those with optimum growth the risk of more severe cerebral palsy in male babies is 16 times higher for those with a birth weight below the 3rd centile and four times higher when birth weight is above the 97th centile. In contrast, for mild cerebral palsy in female babies the excess risks at these growth extremes are about half these magnitudes. CONCLUSIONS: Among singleton children with cerebral palsy, abnormal intrauterine size, either small or large, is associated with more severe disability and male sex.

Are hospital based notifications enough? Achieving accurate case ascertainment--the Southern Ireland Cerebral Palsy Register (SICPR).

The Southern Ireland Cerebral Palsy Register (SICPR) attempts to identify all cases of cerebral palsy in the Southern Health Board region. Multiple sources of case ascertainment are necessary to achieve a complete register. The aims of the study were to ensure the accuracy of case ascertainment to this register. A postal survey to all general practitioners in the Southern Health Board region did not confirm any new cases of cerebral palsy to the register. We encourage all health professionals to notify our register of any child with suspected cerebral palsy.

Link Family Support - an evaluation of an in-home support service.

A significant body of research has shown that parents who have a child or a dependent adult with a disability experience significant and persistent levels of stress. One of the recognized strategies for coping includes the provision of in-home practical support. Enable Ireland provides a range of services for children and adults with a physical disability. The present study explored home support services with a sample of 16 families of service users of Enable Ireland Cork. Practical support was deemed to be whatever support or intervention requested by the parent of the child/dependent adult which afforded the service user the opportunity to engage in social/recreational opportunities and that gave the parent free time. Sixteen members of the chosen families were interviewed (15 mothers and one father) using a semi-structured interview schedule and a standardized stress measure before and after the introduction of Link Family Support (LFS). LFS was put in place for a period of 12 months, tailored to the families and service users' individual needs. Although levels of stress continued to be high and scores on the Parenting Stress Index (PSI) did not show a statistically significant reduction after the programme, reported stress levels had improved. Parents reported LFS to be very helpful in reducing perceived stress and improving family's quality of life through providing free time and access to leisure and recreation facilities. This study provided limited but clear evidence of the need for regular, flexible, in-home support for families with children and dependent adults with a disability. LFS provided a personal, regular and effective means of meeting this need as the findings of this study demonstrated.

Enhancement of true-positive rates for nonpalpable carcinoma of the breast through mammographic selection.

A retrospective review of 332 needle localization biopsies for nonpalpable mammographic abnormalities was performed. Twenty-one invasive and 12 noninvasive carcinomas were identified in this population, for a true positive biopsy rate of 10 percent. A review of all needle localization mammograms performed on these patients by a radiologist specializing in mammography identified 225 mammograms with a low probability of malignancy. In this group, there were four in situ and six invasive carcinomas (true positive biopsy rate of 4 percent). In the remaining 107 mammograms with a high probability of malignancy, there were eight in situ and 15 invasive carcinomas (true positive biopsy rate of 21.4 percent). In the low probability group, fine needle aspiration or excisional biopsy were recommended for six of the ten neoplasms and follow-up mammograms at three to six months for the remaining four (two in situ and two invasive carcinomas). Using selectivity, 225 biopsies could have been avoided at a savings of $97,368 (Canadian dollars) in fees for physicians alone while still identifying 29 of 33 neoplasms (87 percent of all neoplasms) and possibly delaying diagnosis for three to six months or longer in four of 33 neoplasms (13 percent, two in situ and two invasive) for which follow-up mammograms were recommended.