Parental strees and support of parents of children with spina bifida in Uganda

Background: Children with disabilities in Sub-Saharan Africa depend for a large part of their functioning on their parent or caregiver. This study explores parental stress and support of parents of children with spina bifida in Uganda. Objectives: The study aimed to explore perceived stress and support of parents of children with spina bifida living in Uganda and the factors that influence them. Methods: A total of 134 parents were interviewed. Focus group discussions were held with four parent support groups in four different regions within the country. The Vineland Adaptive Behaviour Scales, Daily Functioning Subscales and Parental Stress Index Short Form (PSI/SF) were administered to measure the child’s daily functioning level and parental stress levels. Results: Parental stress was high in our study population with over half of the parents having a > 90% percentile score on the PSI/SF. Stress outcomes were related to the ability to walk (Spearman’s correlation coefficient [ρ] = −0.245), continence (ρ = −0.182), use of clean intermittent catheterisation (ρ = −0.181) and bowel management (ρ = −0.213), receiving rehabilitative care (ρ = −0.211), household income (ρ = −0.178), geographical region (ρ = −0.203) and having support from another parent in taking care of the child (ρ = −0.234). Linear regression showed parental stress was mostly explained by the child’s inability to walk (β = −0.248), practicing bowel management (β = −0.468) and having another adult to provide support in caring for the child (β = −0.228). Parents in northern Uganda had significantly higher scores compared to parents in other regions (Parental Distress, F = 5.467*; Parent–Child Dysfunctional Interaction, F = 8.815**; Difficult Child score, F = 10.489**). Conclusion: Parents of children with spina bifida experience high levels of stress. To reduce this stress, rehabilitation services should focus on improving mobility. Advocacy to reduce stigmatisation and peer support networks also need to be strengthened and developed. Keywords: Parents; Stress; Spina Bifida; Disability; Afric

Congenital Malaria in Newborns Presented at Tororo General Hospital in Uganda: A Cross-Sectional Study.

Despite recent large-scale investments, malaria remains a major public health concern. Few studies have examined congenital malaria, defined as the presence of malaria parasitemia within the first 7 days of life, in endemic areas. This study aimed to determine the prevalence, to describe the clinical presentation, and to examine factors associated with congenital malaria in newborns aged up to 7 days attending Tororo General Hospital in Uganda. A total of 261 mother/baby pairs were recruited in this cross-sectional study. Giemsa-stained thick blood smears for malaria parasites and rapid malaria diagnostic tests were performed on capillary blood samples from all newborns and mothers, as well as on placental and cord samples from newborns delivered in the hospital. The prevalence of congenital malaria in the newborns was 16/261 (6.1%). No single clinical feature was associated with congenital malaria. However, there were associations between congenital malaria and maternal parasitemia (P < 0.001), gravidity of one (P = 0.03), maternal age < 19 years (P = 0.01), cord blood parasitemia (P = 0.01), and placental malaria (P = 0.02). In conclusion, congenital malaria is not rare in Uganda and there are no obvious clinical features associated with it in the newborn. Based on these findings, we recommend strengthening malaria prevention during pregnancy to reduce the occurrence of congenital malaria in newborns

Rehabilitation for cognitive impairments after cerebral malaria in African children: strategies and limitations

Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/72221/1/j.1365-3156.2006.01685.x.pd

Cognitive Abilities of Pre- and Primary School Children with Spina Bifida in Uganda

This study investigates cognitive abilities of pre/primary school children without and with spina bifida in Uganda. Qualitative semi structured interviews and quantitative functioning scales measurements were combined and conducted with 133 parents, 133 children with spina bifida, and 35 siblings.  ANCOVA was used to test for differences in cognitive scores between children and siblings. Logistic regression analyses were used to study predictive demographic, impairment specific, and environmental factors of cognitive functioning. Children with spina bifida in Uganda had lower cognitive outcomes compared to their siblings. Cognitive outcomes were predicted by age, household income, motor functioning, and schooling. Better motor functioning was predicted by age, the presence of hydrocephalus, and parental support. Continence management was predicted by parental support and household income. Schooling was predicted by age, household income, and motor functioning. Limited access to neurosurgery and rehabilitative care, and schooling had a negative effect on cognitive functioning. Children of parents who have support had better motor functioning, and continence management. A holistic approach for children with spina bifida and their families, including community based rehabilitation; ensuring social support and livelihoods for parents; and access to health and education services can contribute to better cognitive outcomes

Lack of mortality in 22 children with sickle cell anemia and severe malarial anemia

Retrospective studies suggest that there is high mortality in children with sickle cell anemia (SCA) and severe malaria. We assessed mortality in Ugandan children with severe malarial anemia (SMA, n = 232) or cerebral malaria (CM, n = 267) by sickle cell hemoglobin genotype. Admission and 2‐year follow‐up mortality did not differ among children with SMA who had homozygous form of sickle cell hemoglobin (HbSS) versus normal form of adult hemoglobin (admission, 0/22, 0%, vs. 1/208, 0.5%; follow‐up, 1/22, 4.5%; 7/207, 3.4%, respectively; all P > 0.6). The single child with CM and HbSS survived. The study findings highlight the need for large prospective studies of malaria‐related mortality in children with SCA

Patterns of traumatic brain injury and six-month neuropsychological outcomes in Uganda

Abstract Background Traumatic brain injuries in Uganda are on the increase, however little is known about the neuropsychological outcomes in survivors. This study characterized patients with traumatic brain injury (TBI) and the associated six-month neuropsychological outcomes in a Ugandan tertiary hospital. Methods Patients admitted at Mulago Hospital with head injury from November 2015 to April 2016 were prospectively enrolled during admission and followed up at six months after discharge to assess cognition, posttraumatic stress symptoms (PTSS), depression symptoms and physical disability. The outcomes were compared to a non-head-injury group recruited from among the caretakers, siblings and neighbours of the patients with age and sex entered as covariates. Results One hundred and seventy-one patients and 145 non-head injury participants were enrolled. The age range for the whole sample was 1 to 69 years with the non-head injury group being older (mean age (SD) 33.34 (13.35) vs 29.34 (14.13) years of age, p = 0.01). Overall, motorcycle crashes (36/171, 38.6%) and being hit by an object (58/171, 33.9%) were the leading causes of TBI. Head injury from falls occurred more frequently in children < 18 years (13.8% vs 2.8%, p = 0.03). In adults 18 years and older, patients had higher rates of neurocognitive impairment (28.4% vs 6.6%, p < 0.0001), PTSS (43.9% vs 7.9%, p < 0.0001), depression symptoms (55.4% vs 10%, p < 0.0001) and physical disability (7.2% vs 0%, p = 0.002). Lower Glasgow Coma Score (GCS) on admission was associated with neurocognitive impairment (11.6 vs 13.1, p = 0.04) and physical disability (10 vs 12.9, p = 0.01) six months later. Conclusion This first such study in the East-African region shows that depth of coma on admission in TBI is associated with neurocognitive impairment and physical disability.https://deepblue.lib.umich.edu/bitstream/2027.42/147735/1/12883_2019_Article_1246.pd

Changing trends in incidence and aetiology of childhood acute non-traumatic coma over a period of changing malaria transmission in rural coastal Kenya: a retrospective analysis

OBJECTIVES: Recent changes in malaria transmission have likely altered the aetiology and outcome of childhood coma in sub-Saharan Africa. The authors conducted this study to examine change in incidence, aetiology, clinical presentation, mortality and risk factors for death in childhood non-traumatic coma over a 6-year period. DESIGN: Retrospective analysis of prospectively collected data. SETTING: Secondary level health facility: Kilifi, Coast, Kenya. PARTICIPANTS: Children aged 9 months to 13 years admitted with acute non-traumatic coma (Blantyre Coma Score =2) between January 2004 and December 2009 to Kilifi District Hospital, Kenya. EXCLUSION CRITERIA: delayed development, epilepsy and sickle cell disease. RESULTS: During the study period, 665 children (median age 32 (IQR 20-46) months; 46% were girls) were admitted in coma. The incidence of childhood coma declined from 93/100 000 children in 2004 to 44/100 000 children in 2009. There was a 64% overall drop in annual malaria-positive coma admissions and a 272% overall increase in annual admissions with encephalopathies of undetermined cause over the study period. There was no change in case death of coma. Vomiting, breathing difficulties, bradycardia, profound coma (Blantyre Coma Score=0), bacteraemia and clinical signs of meningitis were associated with increased risk of death. Seizures within 24 h prior to admission, and malaria parasitaemia, were independently associated with survival, unchanging during the study period. CONCLUSION: The decline in the incidence and number of admissions of childhood acute non-traumatic coma is due to decreased malaria transmission. The relative and absolute increase in admissions of encephalopathy of undetermined aetiology could represent aetiologies previously masked by malaria or new aetiologies