bluuebunny/crossref_metadata_2025_split huggingface dataset:
Responding to the experiences of minority ethnic children in virtually all‐white communities
Authors: Scourfield Jonathan , Evans Jonathan , Shah Wahida , Beynon Huw 
Published: March 2003

ABSTRACTThis paper aims to contribute to the relatively small body of literature on the minority ethnic experience in almost entirely white communities, by reporting the findings of qualitative research into the experiences of minority ethnic children living in the South Wales valleys. Twenty‐eight interviews were conducted with children and their parents/carers. Interviews with children also included sentence completion and card‐sorting tasks. The paper focuses on the views expressed about quality of life, sense of community, leisure activities, experience of racism and dealings with institutions. The children and adults revealed a complex picture, which challenges both optimistic accounts of ‘traditional’ communities and also the negativity of pressure group reports on racism in similar areas. There is considerable variety of experience, mediated by class and gender. Whilst racism is in many respects an ever‐present reality for these children, many of them find creative ways of responding to their situation. Several also spoke of their lives in the valleys in generally very positive terms. The paper concludes by reflecting on the potential implications of the research for policy and practice.
‘Your friends don’t understand’: Invisibility and unmet need in the lives of ‘young carers’
Authors: Thomas Nigel , Stainton Timothy , Jackson Sonia , Cheung Wai Yee , Doubtfire Samantha , Webb Amanda 
Published: March 2003

ABSTRACTThis paper is based on a study of the experiences of people identified as ‘young carers’, commissioned by the National Assembly for Wales as part of a wider review of carers’ needs and services. Following a brief review of some of the previous research in this area, the paper reports key findings of the research, using the words of children and young people as much as possible. It then goes on to explore some of the wider implications of this and other research for the identification and support of ‘young carers’ and their families, and for the understanding of the needs and wishes of children and young people so defined. The paper concludes with an alternative definition of a ‘young carer’ and with some recommendations for professional practice, suggesting that the role of social work is crucial in this area of service.
Characteristics of paediatric home care provision: the two dominant models in England
Authors: While A E , Dyson L 
Published: March 2003

Summary Aim To describe characteristics of paediatric home care teams Background Home care provision is increasing and recent government initiatives such as support for Princess Diana Memorial Fund nursing teams will provide additional impetus to universal provision. However, little is known about the characteristics of paediatric home care teams. Method A postal survey of all services in England (n= 137) listed in the 13th edition of RCN 1996 Directory of Community Children’s Nursing Services was undertaken. A response rate of 85.5% was achieved. Findings More than half (54.6%) of the teams had been founded after 1990. Most (72.2%) were managed through paediatric or child health directorates and most (77.8%) were based in hospitals. The size of teams varied enormously (range 1–22; median 3). Only a small (5.6%) minority of teams provided care at night although over a third (37%) reported making special arrangements for terminally ill children. Conclusion The survey revealed two dominant models of paediatric home care: the community model with strong links to primary health care and other local provisions and the hospital outreach model with strong links to the hospital service. A number of weaknesses in current provision are identified: variability in geographical coverage; undesirably low core staffing numbers; poor 24‐h coverage; and potentially compromised staff skills and knowledge. The need for research to clarify the strengths of the different models and their effectiveness is highlighted.
Organising habilitation services: team structures and family participation
Authors: Larsson M 
Published: March 2003

SummaryThis study is part of a project focusing on co‐operation between receivers of habilitation services (families) and professionals. The study focuses on the organisation and co‐ordination of the services, and compares two structures for their accomplishment. The first is the typical multiprofessional habilitation team (MHT), and the second is the individualised team (ISP). MHT teams are organised within the habilitation agency, while ISP teams span institutional boundaries. An ISP team is formed around the individual child who receives services from the habilitation centre, and includes parents (sometimes the child), professionals from the habilitation centre, and professionals from other service‐providing institutions that are actively involved (for instance pre‐school teacher, schoolteacher etc.). The team maps child and family needs, organises assessments and services and formulates goals that subsequently are monitored and followed up. A questionnaire (Measures of Processes of Care) was used to assess the experiences of 385 service receivers. The questionnaire focuses on service receivers' experiences of the family‐centredness of the service, operationalised in 56 items, along with five items concerning perceptions of level of control over service provision. The experiences of families having individualised teams were compared to those not having these teams. Significant differences were obtained, suggesting the impact of the form of service organisation on the content. Families having ISP teams report both more family‐centred service, and a greater level of control over service provision. Results are discussed in terms of organising structures and co‐ordination of services, and in terms of family participation.
The development of a theoretically driven generic measure of quality of life for children aged 6–12 years: a preliminary report
Authors: Eiser C , Vance Y H , Seamark D 
Published: March 2003

SummaryObjective To report the development and psychometric properties of a generic computer‐delivered measure of quality of life (QoL) suitable for children aged 6–12 years: the Exqol. The theoretical model adopted is based on an assumption that poorer QoL is the result of discrepancies between an individual's actual (‘like me’) and ideal self (‘how I would like to be’).Method The Exqol consists of 12 pictures, each of which is rated twice; first in terms of ‘like me’ and second as ‘I would like to be’. The Exqol is delivered using a Macintosh Powerbook and takes approximately 20 min to complete. Data are reported for 58 children with asthma (Mage = 8.95 years) and 69 healthy children (Mage = 7.49 years). In order to determine validity of the Exqol, children with asthma also completed the Childhood Asthma Questionnaire (CAQ) and their mothers completed a measure of child vulnerability and caregiver QoL.Results Higher discrepancies were found for children with asthma compared with healthy children (P < 0.05). For children with asthma, significant correlations were found between discrepancy scores and two of the four subscales of the CAQ. Children who rated their asthma to be more severe also had higher discrepancy scores (P < 0.05).Conclusions The Exqol has acceptable internal reliability and validity and distinguishes between children with asthma and healthy children. These data provide preliminary support for the theoretical assumption that QoL reflects perceived discrepancies between an individual's actual and ideal self. Methodological refinements to the Exqol are suggested.
The construct validity of the Griffiths Scales of Mental Development
Authors: Luiz D M , Foxcroft C D , Stewart R 
Published: March 2003

SummaryThe aim of this study was to contribute to our knowledge of the construct validity of the Griffiths Scales of Mental Development (Griffiths Scales) through an examination of the underlying dimensions tapped by the six subscales, using Common Factor Analysis. A sample of 430 South African children, from four ethnic groups (i.e. White, Mixed Race, Asian and Black) participated. The correlation coefficients obtained for the South African groups were compared to those Griffiths obtained in her work with the British standardization sample of the Griffiths Scales. The pattern of correlation for South African and British subjects was found to be similar. This suggests that the Scales are measuring a construct which is consistent across cultures and through time. A factor analysis was performed with the data for each South African ethnic group separately and the factor solutions were compared to determine whether the Griffiths Scales measure similar or different constructs for the groups. The results indicate that the Griffiths Scales tend to measure one factor, and including only common variables, the factor appears to be similar cross‐culturally.
Working children and accidents: understanding the risks
Authors: White L , O’Donnell C 
Published: March 2003

SummaryRecent research suggests that a significant proportion of school children aged 10–16 years are employed outside the home during the school term. Delivery work represents only a minority of such employment and children are found working in a wide range of ‘adult’ jobs, particularly in the service sector. This raises concerns about health and safety hazards faced by working children. There is an absence of data on the effects of different kinds of work and working conditions on child health and development, which is thus a barrier to defining goals, policies and effective action. This paper aims to address these issues through presenting some research findings on child employment and incidences of accident. The study is based on surveys of school children in North Tyneside and Norfolk. Our analysis shows that there is a high level of accidents occurring at work among children aged 10–16 years old. While legislation exists in the UK to prevent children from working in the most hazardous environments and to prohibit young children from undertaking any employment, it is clear that such work does take place. Our findings indicate that it is time to look at the occupational health of children as a major concern.
Treatment demands and differential treatment of patients with cystic fibrosis and their siblings: patient, parent and sibling accounts
Authors: Foster C , Eiser C , Oades P , Sheldon C , Tripp J , Goldman P , Rice S , Trott J 
Published: March 2003

SummaryCystic fibrosis (CF) is a progressive disease with no known cure. Advances in diagnosis and treatment have resulted in patients living longer and thus families live with the illness for longer. Treatments are becoming increasingly demanding and are largely performed in the family home. Mothers are often reported to experience greater stress and poorer adjustment than mothers of well children or population norms. Patients and siblings are also reported to display adjustment difficulties. Siblings have rarely been included in research designs. This qualitative study investigates the impact of CF and treatment on eight patients, eight mothers, one father and eight siblings. A family systems perspective was adopted. Each individual was interviewed independently using semistructured interviews. Patients and siblings were aged between 9 and 21 years. Qualitative analyses revealed high levels of non‐adherence (intentional and unintentional) and parental involvement in treatment, minimal involvement of siblings, and preferential treatment towards patients. Demanding treatment, coupled with the progressive nature of CF, promote high levels of parental involvement for younger children as well as older teenagers, often due to attempted or actual non‐adherence. Siblings may receive less attention while patients' needs take priority. Future development of a measure of adherence suitable for children and adolescents should take into account different motivations for non‐adherence, particularly regarding the level of personal control over adherence to treatment. In addition, the potential impact of having a brother or sister with CF should not be underestimated and the needs of siblings should not go unnoticed.
The long‐term costs of preterm birth and low birth weight: results of a systematic review
Authors: Petrou S , Sach T , Davidson L 
Published: March 2003

AbstractThe high rates of morbidity and mortality arising from preterm birth and low birth weight impose an immense burden on the health, education and social services, and on families. This paper presents the results of a systematic review of the published and unpublished evidence regarding the long‐term economic implications of preterm birth and low birth weight for various sectors of the economy and for individuals. The paper highlights the variable methodological quality of the bulk of long‐term economic studies of preterm birth and low birth weight and suggests ways in which these methodological limitations can be overcome. The paper reveals that preterm birth and low birth weight can result in substantial costs to the health sector following the infant's initial discharge from hospital. It can also impose a substantial burden on special education and social services, on families and carers of the infants and on society generally. In addition to the costs identified by the literature, preterm birth and low birth weight can have other long‐term consequences that require evaluation from an economic perspective.
Sanitary towel provision and disposal in primary schools
Authors: Jones R , Finlay F 
Published: March 2003

AbstractThis study was designed to look at arrangements for menstruating girls in primary schools. We report the results of a questionnaire sent to the head teachers of 344 randomly selected primary schools throughout the UK. Although sanitary towels were available in 90% of schools, most girls had to ask an adult for a towel. Almost 60% of schools had disposal facilities, but in only 43% were facilities situated within individual toilet cubicles. The deficiencies identified in provision for girls in primary schools should be addressed.
Child care in Slovenia: an example of a successful transition
Authors: Stropnik N 
Published: March 2003

SummarySlovenia is a country which has managed to retain most of its advantages and achievements in preschool child care attained in the socialist period, while, during the transition years, rather successfully reforming services according to principles of the market economy. The female activity rate has been high since the mid 1940s, and female employment has been the main factor influencing the demand for preschool child care services. Slovenian mothers work full‐time and after 1 year of paid maternity and parental leave they mostly stay in the labour market. Child care facilities, 70% of them constructed in the period 1971–1985, are sufficient for almost 60% of the preschool population, and just a very small percentage of demand remains unmet. Child care services are traditionally highly subsidised. On average, parents finance up to a quarter of the current costs, so that the average in‐kind transfer for a child in child care amounts to about 30% of the average net salary. Social assistance recipients are exempt from paying fees altogether, while the rest of the parents pay from 15% to 80% of the current costs. The highest fee is paid by families with a per capita income > 110% of the average salary in Slovenia. Research into the burden of parental fees for child care in Ljubljana in 1994 has shown that three‐quarters of families spent between 5 and 15% of their total net income on child care (for one or more children). For three‐quarters of families, the total of fees paid did not exceed 30% of their net income per family member. The lower middle income group was relatively most burdened by child care fees.
Environmental barriers in mainstream schools
Authors: Hemmingson H. , Borell L. 
Published: March 2003

AbstractResearch on students with disabilities in mainstream schools often focuses on the students’ personal abilities rather than on the establishment itself. To promote inclusive education, the environmental prerequisite for participation has to be explored also. The aim of this study was to identify the barriers to participation in Swedish mainstream schools, from the personal perspective of students with physical disabilities. The study also investigated how gender, diagnosis, level of mobility, academic years and availability of an assistant were related to student–environment fit. A total of 34 students with physical disabilities, aged between 10 and 19 years, participated in the study. The students were assessed by ‘The school‐setting interview’. Results show that two‐thirds of the students experienced barriers to participation in both the physical and the social environment. A majority of the barriers originated from the way in which school activities were organized and carried out in schools. Failure to provide adequate environmental adjustments resulted in restricted participation or exclusion from some of the activities in class. Older students experienced significantly more barriers than younger ones because the school organization was less favourable. The results suggest that the way in which activities are organized in school is the area in need of most improvements to promote participation of students with physical disabilities.
‘I’ve come for his throat’: roles and identities in doctor–parent–child communication
Authors: Tates K. , Meeuwesen L. , Elbers E. , Bensing J. 
Published: March 2003

AbstractPrevious studies on doctor‐parent‐child communication at the general practitioner’s surgery showed that the GP and the parent differ fundamentally in the way they enable or constrain child participation. The question how to explain these differences is at the core of the present study. The aim is to describe how the three participants display their orientation to their institutional roles and identities; how they collaboratively co‐construct the course of action; and how these discursive constructions structure the ongoing interaction. A qualitative analysis of 106 videos shows that although GP and parent initially show incongruent orientations toward child participation, in the further course of the encounter all three participants jointly establish a situation in which child participation appears to be rather an exception. It is concluded that parental speaking for the child is, in a way, institutionally co‐constructed; parents take their responsibility, which is hardly ever questioned by children, and GPs ratify this behaviour by refraining from meta‐communicative comments and by aligning with the parent in the course of the interaction. The results are discussed in terms of enabling child participation and implications for medical practice.
Predictors of parental adjustment to children’s epilepsy in rural India
Authors: Pal D. K. , Chaudhury G. , Das T. , Sengupta S. 
Published: March 2003

AbstractBackground Negative societal attitudes towards disability affect the adjustment of parents when their child is diagnosed with epilepsy. Recent studies have suggested that parental and child outcomes, including adjustment, can be influenced by non‐directed social support to mothers of children with disability. The objective of our study was to test the hypothesis that maternal satisfaction with social support, measured at the beginning of treatment, would predict parental adjustment to the child’s epilepsy after 1 year of treatment.Methods We enrolled 46 mothers of children aged 6–18 years with epilepsy in the study. We measured social support using the modified Dunst family support scale, and parental adjustment using a locally validated instrument (S‐PAM). Correlation was tested using a multiple linear regression model, allowing for confounding variables.Results Parental adjustment at outcome was positively independently correlated with satisfaction with social support at baseline, and negatively with severity of the child’s epilepsy. The regression model explained 34% of the total variance.Conclusions Taken together with evidence from previous studies, this finding supports the idea that helping parents to find more satisfaction within their (new or existing) social networks will promote adjustment to their child’s disability.
Functional limitations of school‐aged children seen in primary care
Authors: Palermo T. Mizell , Childs G. , Burgess E. S. , Kaugars A. Seja , Comer D. , Kelleher K. 
Published: March 2003

AbstractObjectiveThe purpose of the present study was to assess the prevalence of functional limitations in children seen in a large paediatric practice network and to identify sociodemographic, family and psychosocial factors related to functional limitations.Study designCross‐sectional analysis.PopulationChildren were recruited from two large, practice‐based primary care research networks during their paediatric office visits. For the present study, participants included 14 630 school‐aged children (ages 6–15 years) and their caregivers.Outcomes measuredParents completed written questionnaires including the Pediatric Symptom Checklist, the Family Apgar and the Functional Limitations Index.ResultsFindings indicated that 15% of children surveyed had some limitation in their daily functioning. More children had schoolwork and physical function limitations than limitations in personal and self‐care. Logistic regression equations predicted functional limitations and health status in children from a model of sociodemographic factors, psychosocial symptoms and family functioning.ConclusionsA low but significant number of school‐age children seen in the primary care setting experience functional limitations. Children with any psychosocial symptoms were at increased risk for functional limitations, indicating the critical need to screen for functional impairment in children with suspected behavioural or emotional problems. A screening tool of functional limitations may be useful for assessing the presence or absence of such limitations in children's daily function and warrants further investigation.
Requirement of CD28‐CD86 costimulation for allergen‐specific T cell proliferation and cytokine expression
Authors: Van Neerven  , Van DE Pol  , Van Der Zee  , Stiekema  , DE Boer  , Kapsenberg  
Published: March 2003

BackgroundAllergen‐specific T lymphocytes biased to the production of type 2 cytokines play an important role in the pathophysiology of atopic disease. It is not known whether optimal activation of these T cells requires costimulation via interaction of B7 (CD86/CD80) with CD28.MethodsPeripheral blood mononuclear cells (PBMC), isolated from 10 house dust mite Dermatophagoides pteronyssinus (Der p)‐allergic asthma patients and 10 non‐allergic control individuals, were stimulated with house dust mite (Der p) and the control antigens Candida albicans (CA) and tetanus toxoid (TT). The role of costimulation in activation for proliferation and cytokine mRNA production of peripheral blood T cells was studied by blocking CD28, CTLA‐4, and their ligands CD80 (B7–1) and CD86 (B7–2).ResultsThe proliferation and the production of type 1 and 2 cytokine mRNA by T cells in response to Der p as well as the control antigens TT and CA was inhibited by simultaneously masking CD80 and CD86 using CTLA4‐Ig, a soluble form of CTLA‐4. Notably, Der p‐specific proliferation of T cells from Der p‐allergic asthma patients and non‐allergic controls were inhibited equally well. Additional experiments with MoAbs revealed that activation of these T cells was optimally inhibited by blocking the interaction of CD28 with CD86.Conclusion In vitro responses of allergen‐ and antigen‐specific T cells of allergic patients and non‐allergic control persons are equally dependent on costimulation via the CD28‐CD86 pathway, suggesting that inhibition of this pathway may prevent complete activation of allergen‐specific T cells in allergic individuals in vivo.