Psychosocial aspects of feeding children with neurodisability

The psychosocial support needs of parents considering a gastrostomy feeding tube for their disabled child are often overlooked, yet there is a growing body of evidence that attests to the decisional conflicts parents, often mothers, experience. This may be in addition to the stress associated with feeding a disabled child. The support needs of families and caregivers should be assessed, including the values parents attach to oral and tube feeding. Structured support should be embedded within the care pathway and both professionals, and service users, with appropriate training should be identified to ensure parental information needs, and any emotional, practical and financial issues are addressed

Prevalence of hip dislocation among children with cerebral palsy in regions with and without a surveillance programme: a cross sectional study in Sweden and Norway

<p>Abstract</p> <p>Background</p> <p>Hip dislocation is a serious complication among children with cerebral palsy (CP). The aim of this study was to compare the prevalence of hip dislocation among children with CP in an area providing regular care with an area providing hip surveillance services.</p> <p>Methods</p> <p>This is a cross-sectional study in seven Norwegian counties providing regular care and one Swedish healthcare region where a hip surveillance programme was introduced in 1994. Data were provided by the Norwegian Cerebral Palsy Register and the CP Register in Southern Sweden. Children born 1996 - 2003 with moderate to severe CP, defined as Gross Motor Classification System (GMFCS) levels III - V, were included. In all, 119 Norwegian and 136 Swedish children fulfilled the criteria. In Norway, data on hip operations and radiographs of the hips were collected from medical records, while these data are collected routinely in the Swedish register. The hip migration percentage was measured on the recent radiographs. Hip dislocation was defined as a migration percent of 100%.</p> <p>Results</p> <p>The proportion of children at GMFCS levels III - V was 34% in the Norwegian and 38% in the Swedish population. In the Norwegian population, hip dislocation was diagnosed in 18 children (15.1%; CI: 9.8 - 22.6) compared with only one child (0.7%; 95% CI: 0.01 - 4.0) in Southern Sweden (p = < 0.001). Hip surgery was performed in 53 (44.5%) of the Norwegian children and in 43 (32%) of the Swedish children (p = 0.03). The total number of hip operations was 65 in Norway and 63 in Sweden. Norwegian children were first operated at a mean age of 7.6 years (SD: 2.9) compared with 5.7 years (SD: 2.3) in Sweden (p = 0.001).</p> <p>Conclusions</p> <p>The surveillance programme reduced the number of hip dislocations and the proportion of children undergoing hip surgery was lower. However, with the surveillance programme the first operation was performed at a younger age. Our results strongly support the effectiveness of a specifically designed follow-up programme for the prevention of hip dislocation in children with CP.</p

Cerebral palsy and neonatal death in term singletons born small for gestational age.

BACKGROUND AND OBJECTIVES: To investigate the probable timing of events leading to cerebral palsy (CP) in singletons born small for gestational age (SGA) at term, taking neonatal death into consideration. METHODS: In this registry-based cohort study, data on 400 488 singletons born during 1996-2003 were abstracted from the Medical Birth and the CP registries of Norway. Among 36 604 SGA children (birth weight &lt;10th percentile), 104 died in the neonatal period and 69 developed CP. Apgar scores at 5 minutes, risk factors, MRI findings, and CP subtypes were used to assess the timing of events leading to CP or neonatal death. RESULTS: Intrapartum origin of CP was considered in 5 SGA children (7%; 95% confidence interval: 3-16) in comparison with 31 of 263 (12%; 95% confidence interval: 8-16) non-SGA children (P = .28). The proportions of children who died in the neonatal period after a probable intrapartum event did not differ between the groups when children with congenital malformations were excluded. Probable antenatal events leading to CP and neonatal death were more common among SGA than non-SGA children (P &lt; .001). CONCLUSIONS: In ~90% of children born SGA the event leading to CP is of probable antenatal origin. The low proportion of SGA children with CP after a probable intrapartum event was not outweighed by a higher neonatal mortality rate when congenital malformations were excluded. The higher risk of CP among SGA than among non-SGA children is probably due to a higher prevalence of antenatal risk factors