"Not such a kid thing anymore": Young adults' perspectives on transfer from paediatric to adult cardiology care.

BACKGROUND: Transfer of adolescents with congenital heart disease from paediatric cardiology providers to specialized adult congenital heart disease (ACHD) care providers is becoming a standard practice. However, some paediatric cardiologists continue to provide care for their patients into adult life. Little is known about the perspectives of young adult patients who have been transferred to ACHD clinics versus those who continue to receive their cardiology care in paediatric settings. METHODS: Content and thematic analysis of structured telephone interviews with 21 young adults age 18-25 (13 transferred to ACHD clinic and 8 who had not transferred) was conducted to identify similarities and differences in patient characteristics of those in ACHD versus paediatric settings. RESULTS: There were no appreciable differences in gender, age, heart disease type, and independence between those transferred to ACHD care versus those not transferred. Participants in both groups were aware of differences between the paediatric and ACHD care settings and providers, with some favouring the familiarity offered by the paediatric setting and providers. Participants had varying views on parental involvement in their care; most of them had attended clinic appointments on their own. Those who had transferred to ACHD care acknowledged that it would take time to adjust to new relationships. Positive perspectives on actual or anticipated transfer to ACHD care included a growing sense of autonomy and responsibility, as well as access to reproductive information relevant to ACHD patients. CONCLUSIONS: The absence of patient characteristics distinguishing those in ACHD care versus those still followed in paediatric care suggests that system, provider, and parent factors, rather than patient factors, may account for patients' perspectives on transfer to ACHD care.

Siblings of children with complex care needs: their perspectives and experiences of participating in everyday life.

BACKGROUND: Participating in everyday life is essential to the healthy development and emotional well-being of children. However, little is known about siblings of children with complex care needs (CCN), and their perspectives and experiences of participating in everyday life. The aim of this paper is to present research findings that add to our understanding of how siblings of children with CCN view and experience participation in everyday life. METHODS: To arrive at a detailed and accurate understanding of the siblings' perspectives and experiences, we used the qualitative research design of ethnography. Sixteen siblings (seven brothers, nine sisters) of children with CCN were recruited. The siblings ranged in age between 7 and 25 years, with a mean age of 14 years. All siblings took part in opened-ended interviews and completed ecomaps to describe how they participate. Five siblings also took part in the photovoice method. Analysis involved several iterative steps, congruent with ethnography. RESULTS: Four main themes emerged as follows: (1) participation is about being part of a group; (2) it feels good; (3) I love my sibling but…; and (4) promoting participation. Siblings of children with CCN identified challenges to participation and also described ways that they participate that relate to the care of their sibling. CONCLUSIONS: Siblings prioritized the relationship with their sisters and brothers with CCN in their life, and a great deal of their participation was chosen with their sibling in mind. Sibling-to-sibling relationships were distinct and meaningful and, as a result, participation was always done mindfully and with the family needs at the forefront. Nonetheless, clinicians caring for children with CCN must keep in mind the challenges that siblings of children with CCN experience and provide strategies to siblings that will help to promote their participation in everyday life.

Validation of a gas chromatography/thermal conductivity detection method for the determination of the water content of oxygenated solvents.

A gas chromatographic (GC) method for the determination of the water content of acetone solutions containing methyl isobutyl ketone (MIBK) and other by-products of MIBK synthesis was developed and validated. Linearity is demonstrated (R2=0.9999) over a broad range of water concentrations in acetone ranging from 0.04 to 15.2% (w/w). The quantitation limit (QL) of this technique was found to be 0.346% (w/w) and the detection limit (DL) was estimated to be 13ppm. Validation of this analytical method's accuracy against a coulometric Karl Fischer titration (KFT) method showed excellent agreement between these two techniques. The GC/TCD method is accurate to within a relative error of 3.49% with respect to the KFT method for water concentration above the QL. However, the analysis of six samples below the QL showed an average relative error of 10.96%. Consequently, the KFT method is recommended for the moisture analysis of samples for water concentrations below 0.35% (w/w). Excellent precision is realized for water concentration above the QL (RSD<<0.8%). Good precision (RSD=1.1%) was obtained for the sample with the lowest water concentration investigated (0.04%, w/w). Repeatability, robustness and excellent specificity of this technique are demonstrated.

Growth in children with cerebral palsy fed via gastrostomy.

Growth characteristics of 57 children with feeding gastrostomies attending the cerebral palsy clinic at a regional medical facility were evaluated. All children had severe neuromotor and orofacial involvement and mental retardation. More than 90% of the patients were less than fifth percentile for height and weight, and 80% were underweight for height before gastrostomy tube placement. Following gastrostomy, 33% remained underweight for height and 21% became overweight for height. The majority of children remained at less than the fifth percentile for height and weight. Improvement in linear growth was much less common than improvement in weight. Children with gastrostomies placed in the first year of life were most likely to exceed the fifth percentile for height and weight. The mechanisms of growth retardation in children severely affected by cerebral palsy are not known, but poor nutrition is thought to be the major contributor. Gastrostomy feeding in children severely affected by cerebral palsy can improve nutritional status but does not eliminate growth retardation. The importance of growth and adequate nutrition in reducing morbidity in children with severe neuromotor involvement remains to be established.

Effect of a Soft Boston Orthosis on pulmonary mechanics in severe cerebral palsy.

Spinal braces such as the Soft Boston Orthosis (SBO) help stabilize scoliosis and improve sitting, positioning, and head control in individuals with cerebral palsy. However, their impact on pulmonary mechanics in this population has not been studied. We examined the effect of a Soft Boston Orthosis on the pulmonary mechanics and gas exchange in 12 children and young adults (5-23 years of age) with severe cerebral palsy. Pulmonary resistance, compliance, tidal volume, minute ventilation, work of breathing, oxygen saturation, and end-tidal CO2 tension were measured with the subjects seated both with and without the orthosis and in the supine position without the orthosis. There were no significant differences in the measured parameters when comparing subjects with and without their orthoses in the sitting or in the supine position. As would be expected in individuals with severe cerebral palsy, pulmonary resistance was increased (7.33 cm H2O/L/s) and compliance was decreased (0.12 L/cm H2O) compared to reported normal values. Work of breathing was greatest in the sitting position without the orthosis (1.2 dynes/cm), suggesting that the improved positioning achieved with the orthosis may decrease the work of breathing. We conclude that the application of a Soft Boston Orthosis does not impact negatively on pulmonary mechanics and gas exchange in young people with severe cerebral palsy.

Atomic-absorption spectrometric determination of metals and silicon in tar-sands fly-ash.

Atomic-absorption spectrometric methods are described for the determination of metals and silicon in a fly-ash which is produced during oil recovery from Alberta tar sands. The techniques of standard additions and matrix matching are compared. An experimental design for the detection, estimation and correction of interference effects arising in the determination of specific elements in the fly-ash is presented.

Computerised acoustical respiratory phase detection without airflow measurement.

A simple, non-invasive acoustical method is developed to detect respiratory phases in relationship to swallows without the direct measurement of airflow. In 21 healthy subjects (4-51 years) breath sounds are recorded at the trachea and at five different recording locations at the chest wall, with simultaneous recording of airflow by a pneumotachograph. The chest signal with the greatest inspiratory-expiratory power difference ('best location') is either in the mid-clavicular line in the second interspace on the left or third interspace on the right. Using the 'best location' on the chest wall and the tracheal signal, a phase detection algorithm is developed and achieves 100% accuracy in the estimation of respiratory phases without using the measured airflow signal. Thus, acoustically monitoring breaths and swallows holds promise as a non-invasive and reliable assessment tool in the study of swallowing dysfunction.

Special considerations for medication use in children with developmental disabilities.

Regardless of the underlying cause of a child's developmental disability, a similar constellation of associated medical conditions may occur. Successful management approaches in children with developmental disabilities are generally interdisciplinary, frequently involving a variety of medical and surgical disciplines, allied health professionals, and the child's family. Pharmacologic intervention is an integral aspect of the management plan, but consideration must be given both to the possible effects of the medications on a child's growth and development, and to the avoidance of adverse drug interactions and reactions.

[Reconstruction of vascular bed in the affected segment of the leg in patients with defects of the crural bones complicated by chronic osteomyelitis]. / Vosstanovlenie sosudistogo rusla v porazhennom segmente u bolnykh s defektami kostei goleni, oslozhnennymi khronicheskim osteomielitom.

The article analyses the results of medical rehabilitation of 176 patients with defects in the leg bones complicated by chronic osteomyelitis by methods of transosseous osteosynthesis. In average hospitalization terms of 380.8 +/- 15.6 days, medical rehabilitation was achieved in 88.6% of patients. The results of complex clinical and laboratory examination of 46 patients by means of angiographic, radionuclide, and physiological methods confirm gradual correction of the initial regional arterial insufficiency which was combined with anatomical and physiological rehabilitation of the affected leg by the end of treatment. It was established that the high clinical result of the developed methods of transosseous osteosynthesis is based on the formation of a new zone of the vascular channel in the affected limb segment.