Assessment of data quality in a multi-centre cross-sectional study of participation and quality of life of children with cerebral palsy

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. Methods: 1,174 children aged 8–12 years were selected from eight population-based registers of children with cerebral palsy; one further centre recruited 75 children from multiple sources. Families were visited by trained researchers who administered psychometric questionnaires. Logistic regression was used to assess factors related to family non-response and self-completion of questionnaires by children. Results: 431/1,174 (37%) families identified from registers did not respond: 146 (12%) were not traced; of the 1,028 traced families, 250 (24%) declined to participate and 35 (3%) were not approached. Families whose disabled children could walk unaided were more likely to decline to participate. 818 children entered the study of which 500 (61%) self-reported their quality of life; children with low IQ, seizures or inability to walk were less likely to self-report. There was substantial heterogeneity between regions in response rates and socio-demographic characteristics of families but not in age or gender of children. Item non-response was 2% for children and ranged from 0.4% to 5% for questionnaires completed by parents. Conclusion: While the proportion of untraced families was higher than in similar surveys, the refusal rate was comparable. To reduce bias, all analyses should allow for region, walking ability, age and socio-demographic characteristics. The 75 children in the region without a population based register are unlikely to introduce bias

Maternal appraisals of risk, coping and prenatal attachment among women hospitalised with pregnancy complications

One goal of pregnancy is the development of maternal emotional attachment to
the unborn baby, and this attachment has been shown to be related to later
relationships and development. There are many factors which may hinder the
development of prenatal attachment, including the presence of complications,
hospitalisation, and anxiety. However, women’s appraisals of risk may not be
congruent with medical assessments of risk. The current study sought to model
the relationships between risk (maternal perceptions and medical ratings), coping, psychological well-being, and maternal–foetal attachment among 87 women hospitalised for pregnancy-related complications. Analysis indicated that positive appraisal as a coping strategy mediates the relationship between maternal appraisals of risk and maternal–foetal attachment, and that medical ratings of risk were not predictive of maternal–foetal attachment. Awareness of the potential incongruence between patients’ and health professionals’ perceptions of risk is important within the clinical environment. The potential benefits of promoting positive appraisal in high-risk pregnancy merit further research.

Disaggregating conservative Protestant groups in Northern Ireland: Overlapping categories and the importance of a born-again self-identification

Rather than treating conservative Protestantism as a homogenous phenomenon, recent literature has underlined the importance of disaggregating this group to illuminate important attitudinal and behavioral differences between conservative Protestants. However, the methods used to empirically operationalize conservative Protestantism have not always been able to capture variations within the groupings. Based on analysis of the 2004 Northern Ireland Life and Times Survey, we argue that religious self-identification is a more useful way of analyzing conservative Protestant subgroups than denomination or religious belief. We show that many of these identifications are overlapping, rather than stand-alone, religious group identifications. Moreover, the identification category of born-again has seldom been included in surveys. We find having a born-again identification to be a better predictor than the more frequently asked fundamentalist and evangelical categories of the religious and social beliefs that are seen as indicative of conservative Protestantism.

Resolution of a taxonomic conundrum: an ultrastructural and molecular description of the life cycle of Pleistophora mulleri (Pfeiffer 1895; Georgevitch 1929)

The classification of a microsporidian parasite observed in the abdominal muscles of amphipod hosts has been repeatedly revised but still remains inconclusive. This parasite has variable spore numbers within a sporophorous vesicle and has been assigned to the genera Glugea, Pleistophora, Stempellia, and Thelohania. We used electron microscopy and molecular evidence to resolve the previous taxonomic confusion and confirm its identification as Pleistophora mulleri. The life cycle of P. mulleri is described from the freshwater amphipod host Gammarus duebeni celticus. Infection appeared as white tubular masses within the abdominal muscle of the host. Light and transmission electron microscope examination revealed the presence of an active microsporidian infection that was diffuse within the muscle block with no evidence of xenoma formation. Paucinucleate merogonial plasmodia were surrounded by an amorphous coat immediately external to the plasmalemma. The amorphous coat developed into a merontogenetic sporophorous vesicle that was present throughout sporulation. Sporogony was polysporous resulting in uninucleate spores, with a bipartite polaroplast, an anisofilar polar filament and a large posterior vacuole. SSU rDNA analysis supported the ultrastructural evidence clearly placing this parasite within the genus Pleistophora. This paper indicates that Pleistophora species are not restricted to vertebrate hosts.

The Rights of Religious Associations to External Relations: A Comparative Study of the OSCE and the Council of Europe

This paper argues that religious associations have a number of substantive rights when it comes to their external relations. It does so though comparing the position of the OSCE and the Council of Europe. This paper considers whether the emerging framework includes: (1) a right to legal entity status, (2) a right to establish and run charitable or educational institutions, (3) a right to privileges and substantive benefits and (4) a right to anything else. It concludes that the current developments are welcome because religious freedom has a collective aspect that is essential to the lives of many believers.