Human rights of children with intellectual disabilities: comparing self-ratings and proxy ratings.

BACKGROUND: A child rights-based approach to research articulates well with Article 12 of the United Nations Convention on the Rights of the Child (CRC) and highlights the importance and value of including children's own views about aspects that concern them. The aim of this study is to compare children with intellectual disability's own ratings (as self-raters) to those of their primary caregivers (as proxy raters) regarding human rights of children. The study also aims to establish whether there is an inter-rater agreement between the self-raters and proxy raters concerning Maslow's hierarchy of needs. METHOD: This study is nested in a larger study examining the human rights of children with intellectual disability in South Africa. In total, 162 children with intellectual disability from 11 schools across three provinces and their primary caregivers participated by answering parts of a Children's Rights Questionnaire (CRQ) developed by the researchers based on the United Nation's CRC. We compared the answers for six questions in the questionnaire that were addressed to self-raters (children) and proxy raters (primary caregivers) in the same way. RESULTS: Questions regarding basic needs, such as access to clean water or whether the child had food to eat at home, were answered similarly by self-raters and proxy raters. Larger differences were found when self-raters and proxy raters were asked about whether the child had things or friends to play with at home. Socio-economic variables seemed to affect whether self-raters and proxy raters answered similarly. CONCLUSION: The results underscore the importance of promoting children's rights to express themselves by considering the opinions of both the children as self-raters and their primary caregivers as proxy raters - not only the latter. The results indicate that it is especially important to include children's own voices when more complex needs are surveyed. Agreement between self- and proxy ratings could be affected by socio-economic circumstances.

Health and functioning in the everyday lives of young children with cancer: documenting with the International Classification of Functioning, Disability and Health--Children and Youth (ICF-CY).

BACKGROUND: Health care focus is shifting for children from surviving childhood cancer to living with it on a daily basis. There is a need to document health and function in the everyday lives of young children with cancer using the multidimensional framework and language of the International Classification of Functioning, Disability and Health--Children and Youth (ICF-CY). AIMS: The aims of this study were (1) to document health and functioning in the everyday lives of young children with cancer using ICF-CY codes and (2) to identify a comprehensive code set that can aid clinical assessment. METHOD: Interviews with children diagnosed with cancer and their parents, were transcribed, reviewed for content and coded to the ICF-CY using linking procedures. RESULTS: A comprehensive code set (n = 70) for childhood cancer was identified. The majority of content identified to codes was related to activity and participation describing social relations with family, peers and professionals, preschool attendance and play, as well as issues related to support and independence. CONCLUSIONS: The ICF-CY can be used to document the nature and range of characteristics and consequences of cancer experienced by children. The identified comprehensive code set could be helpful to health care professionals, parents and teachers in assessing and supporting young children's health and everyday life through the cancer trajectory. The comprehensive code set could be developed as a clinical assessment tool for those caring for young children with cancer. The universal language of the ICF-CY means that the utility of a clinical assessment tool based on identified codes can have wide reaching effects for the care of young children with cancer.

Detection of Cryptosporidium and Giardia in clinical laboratories in Europe--a comparative study.

To determine the routine diagnostic methods used and compare the performance in detection of oocysts of Cryptosporidium species and cysts of Giardia intestinalis in faecal samples by European specialist parasitology laboratories and European clinical laboratories. Two sets of seven formalin-preserved faecal samples, one containing cysts of Giardia intestinalis and the other, containing oocysts of Cryptosporidium, were sent to 18 laboratories. Participants were asked to examine the specimens using their routine protocol for detecting these parasites and state the method(s) used. Eighteen laboratories answered the questionnaire. For detection of Giardia, 16 of them used sedimentation/concentration followed by light microscopy. Using this technique the lower limit of detection of Giardia was 17.2 cysts/mL of faeces in the best performing laboratories. Only three of 16 laboratories used fluorescent-conjugated antibody-based microscopy. For detection of Cryptosporidium acid-fast staining was used by 14 of the 17 laboratories that examined the samples. With this technique the lower limit of detection was 976 oocysts/mL of faeces. Fluorescent-conjugated antibody-based microscopy was used by only five of the 17 laboratories. There was variation in the lower limit of detection of cysts of Giardia and oocysts of Cryptosporidium between laboratories using the same basic microscopic methods. Fluorescent-conjugated antibody-based microscopy was not superior to light microscopy under the conditions of this study. There is a need for a larger-scale multi-site comparison of the methods used for the diagnosis of these parasites and the development of a Europe-wide laboratory protocol based upon its findings.

Engagement in family activities: a quantitative, comparative study of children with profound intellectual and multiple disabilities and children with typical development.

BACKGROUND: Participation is known to be of great importance for children's development and emotional well-being as well as for their families. In the International Classification of Functioning, Disability and Health - Children and Youth version participation is defined as a person's 'involvement in a life situation'. Engagement is closely related to involvement and can be seen as expressions of involvement or degree of involvement within a situation. This study focuses on children's engagement in family activities; one group of families with a child with profound intellectual and multiple disabilities (PIMD) and one group of families with children with typical development (TD) were compared. METHODS: A descriptive study using questionnaires. Analyses were mainly performed by using Mann-Whitney U-test and Spearman's rank correlation test. RESULTS: Engagement in family activities differed in the two groups of children. The children with PIMD had a lower level of engagement in most family activities even though the activities that engaged the children to a higher or lesser extent were the same in both groups. Child engagement was found to correlate with family characteristics mostly in the children with TD and in the children with PIMD only negative correlations occurred. In the children with PIMD child engagement correlated with cognition in a high number of listed family activities and the children had a low engagement in routines in spite of these being frequently occurring activities. CONCLUSIONS: Level of engagement in family activities in the group of children with PIMD was lower compared with that in the group of children with TD. Families with a child with PIMD spend much time and effort to adapt family living patterns to the child's functioning.

An international comparison of patterns of participation in leisure activities for children with and without disabilities in Sweden, Norway and the Netherlands.

PURPOSE: To investigate whether there are differences in participation in leisure activities between children with and without disabilities in Sweden, Norway and the Netherlands and how much personal and environmental factors explain leisure performance. METHODS: In a cross-sectional analytic design, the Children's Assessment of Participation and Enjoyment, CAPE, was performed with 278 children with disabilities and 599 children without disabilities aged 6-17 years. A one-way between-groups ANOVA explored the differences in participation between the countries. Hierarchical multiple regression analysis assessed if age, gender, educational level, living area and country of residence explained the variance in participation. RESULTS: Scandinavian children with disabilities participated in more activities with higher frequency compared to Dutch children. The strongest predictor was country of residence. For children without disabilities, differences existed in informal activities, the strongest predictor was gender. CONCLUSION: Differences in school- and support systems between the countries seem to influence patterns of participation, affecting children with disabilities most.

Subtype analysis of Blastocystis isolates in Swedish patients.

Blastocystis is a genetically diverse and widespread intestinal parasite of animals and humans with controversial pathogenic potential. At least nine subtypes of Blastocystis have been found in humans. The genetic diversity of Blastocystis was examined in stool samples from 68 patients from the Stockholm area, Sweden. Blastocystis was identified by light microscopy, and subtyped by sequencing the 5'-end of the small subunit ribosomal RNA gene. Five Blastocystis subtypes were identified in the 63 patients whose samples were successfully subtyped: ST1 (15.9%), ST2 (14.3%), ST3 (47.6%), ST4 (20.6%), and ST7 (1.6%). ST3 was more common in males compared to females (P=0.049). Comparative molecular analysis of Blastocystis sequences revealed intra-subtype variations within the identified subtypes with the exception of ST4. Among ST4 sequences in this study, as well as in the majority of human GenBank sequences, a limited genetic diversity was found compared to what was found among the other common subtypes (ST1, ST2 and ST3). The relative prevalence of ST4 in this study was comparable to the overall distribution of ST4 in European cohorts (16.5%). This contrasts with the sparse reports of ST4 in studies from other continents, which may indicate that the distribution of this subtype is geographically heterogeneous.

Antimicrobial resistance in colonizing group B Streptococci before the implementation of a Swedish intrapartum antibiotic prophylaxis program.

The prevalence of antibiotic resistance and their genetic determinants in colonizing group B streptococci (GBS) sampled in a Swedish nationwide survey was examined. In five GBS isolates (1.3%), kanamycin/amikacin resistance and the presence of the aphA-3 gene was identified. Three of these isolates carried the aad-6 gene and were streptomycin-resistant. Screening with kanamycin and streptomycin 1,000-µg disks enabled a rapid and easy detection of these isolates. In all, 312/396 (79%) GBS were tetracycline-resistant and 95% of the examined isolates harbored the tetM gene. Among the 22 (5.5%) GBS resistant to erythromycin and/or clindamycin, the ermB gene was detected in nine isolates (41%) and erm(A/TR) in ten isolates (45%). A high level of erythromycin and clindamycin resistance with minimum inhibitory concentrations (MICs) >256 mg/L was found in four serotype V isolates that harbored ermB. The erythromycin/clindamycin resistance was distributed among all of the common serotypes Ia, Ib, II, III, IV, and V, but was not present in any of the 44 serotype III isolates associated to clonal complex 17. Screening for penicillin resistance with 1-µg oxacillin disks showed a homogenous population with a mean inhibition zone of 20 mm. A change in the present oxacillin breakpoints for GBS is suggested.

High sense of coherence in adolescence is a protective factor in the longitudinal development of ADHD symptoms.

UNLABELLED: The key feature of salutogenesis is that good health can be directly sustained by positive factors. The Sense of Coherence (SOC) scale was developed by Antonovsky as a measure related to the concept of salutogenesis including aspects of comprehensibility, manageability and meaningfulness. AIM: The aim was to investigate whether Sense of Coherence can serve as a salutogenetic factor modifying the long-term development of Attention Deficit Hyperactivity Disorder (ADHD) Symptoms. SUBJECTS AND METHODS: Twin study of Child and Adolescent Development (TCHAD) is a longitudinal study of all twin pairs born in Sweden between May 1985 and December 1986. The present project is a sub-sample of 312 individuals (135 boys and 177 girls). At 16 years of age, the young persons and their parents were interviewed with K-SADS especially symptoms of ADHD. The young person also completed the SOC questionnaire. At 21 years of age, the young person completed a questionnaire about symptoms of ADHD. FINDINGS: Higher (worse) ADHD scores at 16 years of age were associated with higher (worse) ADHD scores at 21 years of age. However, this relationship was stronger for lower (worse) SOC. A higher (better) SOC at 16 years was associated with lower (better) ADHD at 21 years and this relationship was stronger for higher (worse) ADHD at 16 years. CONCLUSION: A high Sense of Coherence in adolescence was a protective factor for the long-term development of ADHD.

Preschool children in need of special support: prevalence of traditional disability categories and functional difficulties.

AIM: To investigate the prevalence of children who are in need of special support in the total population of children attending preschools (CA 1-6) in two Swedish counties, and the functional problems exhibited by the children in relation to demographical and environmental factors in the preschool context. METHOD: Survey distributed to (N = 1138) preschools in two Swedish counties. RESULTS: The majority of children perceived by preschool teachers and in need of special support were undiagnosed children with functional difficulties related to speech, language and interaction with peers. CONCLUSION: Undiagnosed and diagnosed children share the same type of difficulties. Thus, in estimating the prevalence of children in need of special support in a preschool context, traditional disability categories capture only a small proportion of the children experiencing difficulties. Therefore, a functional approach in studies of children in need of special support is recommended.

Development of a new assessment of time processing ability in children, using Rasch analysis.

BACKGROUND: Children with disabilities like ADHD, Autism or Intellectual Disabilities may have problems with everyday functioning related to time management and hence there is a need to develop systematic methods for evaluation of the ability to understand and use time information. The purpose of this study was to examine aspects of construct validity of a new instrument, KaTid, for assessing time processing ability (TPA) in children. METHODS: Data from 144 typically developing, 5-10-years-old typically developing children, were analysed with Rasch analysis. Instruments used were the KaTid, a self-rating scale measuring autonomy in daily routines and a parent scale measuring daily time management. RESULTS: Fifty-one items in KaTid, initially defined in three subcategories: time perception, time orientation and time management, all demonstrated acceptable goodness-of-fit to a Rasch model, indicating evidence of internal scale validity. Performance of the children on the KaTid also provided evidence for validity in response processes and that it may discriminate among children with different levels of TPA. Relationships between the KaTid measures and the parents' ratings of the child's daily time management indicated further evidence of construct validity. CONCLUSIONS: The results of this study supports evidence of construct validity in the KaTid when used with typically developing 5-10 years-old children. Further research is needed to evaluate the validity of KaTid in children with known time processing difficulties.

A discussion of individual variability, in activity-based interventions, using the niche concept.

BACKGROUND: Activity-based intervention has been defined as a child-directed, transactional approach that uses logically occurring antecedents and consequences to develop functional and generative skills by embedding intervention of children's individual goals and objectives in routine, planned or child-initiated activities. In this approach, clear goals and objectives that are functional and embedded in a play activities or routines are developed. The teacher mediates the child's environment to facilitate learning with the child directing the teacher on the pace, duration spent on the objective. Learning and development in this framework occur through both a carefully planned environment and adult facilitation. Progress made by a child using this approach focuses on observational data that describe if the child is able to respond in functional and generative ways. While activity-based interventions are usually provided for a group of children, progress is measured by describing individual children's responses. Individual variations in the children's progress, despite exposure to the same interventions are an area that is seldom discussed. This article aims to explore the niche concept and its application to explaining this variation between individuals. METHODS: Four children participated in this single-subject, multiple-probe study across four participants. A 3-week long activity-based aided language stimulation programme was developed. The effect of the programme was determined by describing the individual participants understanding of the 24 targeted vocabulary items. RESULTS: The results of the activity-based language programme are presented and the variability among the participants is discussed using the niche concept. The role of the niche concept in individual development is described and the implications thereof are discussed. CONCLUSIONS: Finally, activity-based intervention research is placed in a systems perspective and possible outcome measures of this intervention are discussed from a multidimensional ecological perspective.

Parent-child interaction: a comparison of parents' perceptions in three groups.

PURPOSE: To evaluate a children's version of the ICF that takes children's dependency on their parents and a developmental perspective into consideration. METHOD: This study explored how 91 parents perceived child participation in terms of parent/child immediate interaction, and desires for ideal interaction in relation to body impairments and activity limitations. Similarities and differences were investigated in three matched groups of families through questionnaires. Group 1 consisted of parents of children with profound multiple disabilities, Group 2 was developmentally matched and Group 3 was matched according to chronological age. RESULTS: The children with profound multiple disabilities expressed the same amount of emotions as the other groups, but they had difficulties expressing more complex emotions. Parents perceived the children's behaviour styles in a similar way in the three groups. There were significant differences in how the immediate interaction was perceived with parents to children of Group 1 perceiving difficulties in maintaining joint attention and directing attention. CONCLUSIONS: The results suggest that parental perceptions of the interaction with their children with profound multiple disabilities in the immediate setting to a certain extent are related to the body impairments of the children but not strongly to communicative skills /activity limitations. Thus, to focus communication intervention on participation and interaction, assessment and questions to parents have to be focused directly on these issues.

Behaviour style and interaction between seven children with multiple disabilities and their caregivers.

INTRODUCTION: Recent studies show that the existing interaction patterns of children with multiple disabilities should be taken into consideration when planning communication interventions. For children with disabilities, it is especially important that the partner in interaction is sensitive and well aware of the importance of a qualitatively successful interaction. Wilder (unpublished report) found that the behaviour style of 30 children with multiple disabilities was more related to the caregiver-perceived interaction than the communicative skills and functional abilities of the children. This study inductively explored the caregivers' perceptions of interaction within seven caregiver-child dyads. The research questions were: How do the caregivers perceive the interaction? How do the caregivers perceive the children's behaviour style to be related to the interaction with the caregivers? METHOD: The children were selected individually from the participants in Wilder (unpublished report) depending upon the responses the caregivers had given about the children's self-regulation and reactivity in the Carolina Record of Individual Behaviour questionnaire. The study was undertaken by means of home visits where the caregivers participated in an interview asking about their strategies for interaction, how they perceived the roles of the children and their own roles in interaction, the caregivers' opinion of what an interaction constituted of and the caregivers' aims and aspiration for interaction. The data analysis was performed by meaning concentration and categorization through a pendulum between the parts and the entirety of the interviews. In this way, hermeneutics and thematic analysis were both being practised. RESULTS: The results of the interviews are presented as a model with categorizations as a network. The categorizations reflect the system of themes that permeate how the caregivers perceived interaction in the dyad. The themes are: sharing of experience, successful interaction, role of the child, role of the caregiver, interaction methods, obstacles and facilitators and aims and aspirations. DISCUSSION: The caregivers perceived their own role in interaction to be of a sensitive leading kind. The caregivers lead the interaction by using their knowledge about the children's usual way of interacting, the children's behaviour styles, functional abilities, the children's current mood and situation as well as the whole context. They monitored the interaction such that, throughout an interaction sequence, the caregivers always tried to optimize the interaction between the parties in the dyad. The behaviour style was a background factor that the caregivers had knowledge of and scanned in their everyday turn taking. Although there were differences in the children's behaviour styles, the caregivers discussed the same themes in the interviews. The behaviour style became a facilitator for the whole interaction, forced the interaction in certain directions and made the interaction more complete with turn taking of different kinds from both parties. The findings show that it is imperative to see caregivers as experts on their children and to make them assertive in this in relation to professionals. Furthermore, as a successful interaction can boost the development of children, it is essential to direct interventions to the everyday interaction in caregiver-child dyads.

Mutually exclusive distribution of IS1548 and GBSi1, an active group II intron identified in human isolates of group B streptococci.

The present study shows that active, self-splicing group II intron GBSi1 is located downstream of the C5a-peptidase gene, scpB, in some group B streptococcus (GBS) isolates that lack insertion sequence IS1548. IS1548 was previously reported to be often present at the scpB locus in GBS isolated in association with endocarditis. Since none of 67 GBS isolates examined, 40 of which were of serotype III, harbored both IS1548 and GBSi1, these two elements are suggested to be markers for different genetic lineages in GBS serotype III. The DNA region downstream of scpB in GBS isolates harboring either GBSi1, IS1548, or none of these mobile elements was found to encode the laminin binding protein, Lmb, which shows sequence similarities to a family of streptococcal adhesins. IS1548 is inserted 9 bp upstream of the putative promoter for lmb, while the insertion site for GBSi1 is located 88 bp further upstream. Sequences highly similar to GBSi1 exist also in Streptococcus pneumoniae. An inverted repeat sequence, with features typical of transcription terminators, was identified immediately upstream of the insertion site for the group II intron both in the GBS and S. pneumoniae sequences. This motif is suggested to constitute a target for the GBS intron as well as for rather closely related introns in Bacillus halodurans, Pseudomonas alcaligenes, and Pseudomonas putida. When transcripts containing the GBSi1 intron were incubated at high concentrations of ammonium and magnesium, a major product with the expected length and sequence for the ligated exons was generated. Unlike, however, all members of group II investigated so far, the excised intron was in linear, rather than in a branched (lariat), form.

Identification of a novel insertion element, IS1548, in group B streptococci, predominantly in strains causing endocarditis.

Hyaluronidase has been postulated to be a virulence factor in group B streptococci (GBS). No hyaluronidase activity was found in 15 of 50 GBS isolates from adults studied. Most of these hyaluronidase-negative strains belonged to serotype III. In strains lacking hyaluronidase activity, an insertion of 1317 nucleotides was found in the hyaluronidase gene. The fragment was cloned and sequenced and found to have characteristics of a novel insertion sequence, designated IS1548. As well as in GBS serotype III, this sequence was found in 3 of 6 serotype II isolates and in all 10 group A streptococcal strains (GAS) tested. Homologies were found with repeated sequences in Streptococcus pneumoniae and with H repeats in Escherichia coli. All GBS strains harboring IS1548 and some GAS strains had one copy of IS1548 located downstream of the C5a peptidase gene. IS1548 was present in 9 of 13 GBS isolates from blood in endocarditis patients and in 3 of 22 vaginally colonizing strains.

CD4 lymphopenia in a patient with cryptococcal osteomyelitis.

Cryptococcus neoformans is a rarely reported cause of osteomyelitis. In most cases, no obvious underlying condition is found. Immunological laboratory data, however, are not generally available. In the present case of cryptococcal osteomyelitis, idiopathic CD4 lymphopenia was detected. This immunodeficiency is found in cases of disseminated cryptococcosis by chance. Possibly, it may be one so far unrecognized underlying condition in cryptococcal osteomyelitis.

Leuconostoc spp. septicaemia in a child with short bowel syndrome.

Septicaemia caused by the vancomycin-resistant Gram-positive bacteria Leuconostoc spp. is uncommon. We report a case of Leuconostoc spp. septicaemia in a child with short bowel syndrome fed through a central venous catheter and a gastrostomy. Leuconostoc spp. were isolated from several blood cultures. Despite several courses of antibiotics the fever continued and her condition deteriorated. After removal of the thrombotized central venous catheter her condition improved. Leuconostoc spp. was isolated from the thrombotic masses.