| 1. |
- Andrews, Carin, et al.
(författare)
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A Goal-Directed Program for Wheelchair Use for Children and Young People with Cerebral Palsy in Uganda : An Explorative Intervention Study
- 2023
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Ingår i: Journal of Clinical Medicine. - : MDPI. - 2077-0383. ; 12:6
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Tidskriftsartikel (refereegranskat)abstract
- In this exploratory study, we investigate whether goal-directed intervention for wheelchairs can increase the activities of daily living for children and young people with cerebral palsy (CP) when implemented in rural Uganda. Thirty-two children and young people with CP (aged 3–18 years) participated in a home-visit intervention program, which included donating wheelchairs and setting individual goals. Goal achievement, frequency of wheelchair use, condition of wheelchairs, and caregivers’ perspectives were collected by interviews at 6–10 month after the start of intervention and the after three years. Our result show that most wheelchairs were in good condition and frequently used after 6–10 month with 83% goal achievement (132/158 goals; mean 4.3 (range 0–7). The caregivers reported several advantages (e.g., the child being happier) and few disadvantages (e.g., poor design and durability). At the three-year follow-up, only eleven wheelchairs were still used by 23 available participants (seven deceased and two moved). The children achieved 60% of their goals (32/53 goals mean 2.9; range 1–5). This demonstrates that the goal-directed intervention program for wheelchairs can be successfully implemented in a low-income setting with a high rate of goal achievement and frequent wheelchair use, facilitating participation. However, maintenance services are crucial to obtain sustainable results.
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| 2. |
- Andrews, Carin
(författare)
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Cerebral palsy in Uganda : prevalence, mortality, functional development, access to services and wheelchair intervention
- 2021
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background and aim: Cerebral palsy (CP) is one of the most common causes of childhood physical disability, but little is known of children and young people with CP living in low and middle-income countries (LMIC). The studies in this thesis are some of the first population-based studies on CP from sub-Saharan Africa. This PhD project aims to describe the prevalence, mortality, functional development and access to care for children and youth with CP in Uganda, and to explore a strategy for wheelchair intervention in a LMIC. Methods and participants: We did a three stage screening of 31 756 children living in the Iganga/Mayuge Health and Demographic Surveillance Site (IMHDSS), and identified 86 children that were diagnosed with CP, in addition 11 children were found in a triangulation using village key informants. These 97 children were included in a CP cohort, described in study I-IV. Study I and III describe the prevalence, time of injury, functional impairments, care-seeking behaviour and access to services. Study II and IV follow the cohort over a four-year period investigating functional development and mortality. In paper V we conveniently sampled 32 children to be included in an exploratory intervention study testing a goal-directed support program for donated manual wheelchairs. Main findings: The crude prevalence of CP per 1000 children was 2.7 (95% CI 2.2-3.3). The CP prevalence after triangulation was 3.1. The CP prevalence decreased with increasing age, due to a decrease of children with more severe motor impairments. Timing of brain injury was postneonatal (25%) and preterm (2%) and the rest were considered full term. For the children that could not walk 8% had wheelchairs and none had walkers. The children had no assistive devices for communication, vision or hearing. One third of the children had epilepsy, and the treatment gap for epileptic medication was 61%. One third of the children attended school, and school attendance decreased with associated impairment and lower gross motor function. Care seeking for child’s motor impairment was low among caregivers, the main barriers to seeking care were lack of money, lack of knowledge and having lost hope. Fifteen children in the CP cohort died over four years. The mortality rate ratio was 25.3 for children with CP compared to the general population. The risk of death for children with CP was higher for children with severe motor impairment and severe malnutrition. The most common causes of death were anemia, malaria and other infections. Children with CP in Uganda had a slower development in mobility and gross motor function compared to children in HIC, because children with mild motor impairments and younger children (2-5 years) did not follow the steep developmental trajectories from high-income countries (HIC). The goal achievement of set goals for wheelchair use in the intervention was high at 82.6% to 100%. At the start of the wheelchair intervention 12/32 participants had no daily activities other than eating and hygiene, this deceased to 1/31 after the intervention. The main advantages of the wheelchairs according to the caregivers were; not having to carry their child, easier to bring their child, easier feeding, being able to change child’s position, increased social interactions with other children and child being happier. Conclusions: The prevalence of CP in Uganda was higher than in HIC, but this is an underestimate due to high mortality. Children with CP were 25 times more likely to die than children in the general population. Children and young people with CP in Uganda had a slower development in mobility and gross motor function compared to their peers in HIC, this is probably because of their poor access to rehabilitation, assistive devices, health care and education. The wheelchair intervention showed promising results with high attainment of set goals, increased participation in activities, improved positioning, improved mobility and high satisfaction. The findings from this thesis highlight the urgent need to prioritize research and interventions for children with CP in low-income settings. In the current situation not alone do they not thrive but they are struggling to just survive. Directing efforts towards this group has the potential to reduce mortality, increase participation and help the children achieve their developmental potential.
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| 3. |
- Andrews, Carin, et al.
(författare)
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Impairments, functional limitations, and access to services and education for children with cerebral palsy in Uganda : a population-based study
- 2020
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Ingår i: Developmental Medicine & Child Neurology. - : Mac Keith Press. - 0012-1622 .- 1469-8749. ; 62:4, s. 454-462
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Tidskriftsartikel (refereegranskat)abstract
- AIM: To describe the functional limitations and associated impairments of children with cerebral palsy (CP) in rural Uganda, and care-seeking behaviour and access to assistive devices and education.METHOD: Ninety-seven children with CP (42 females, 55 males; age range 2-17y) were identified in a three-stage population-based screening with subsequent medical examinations and functional assessments. Information on school and access to care was collected using questionnaires. The data were compared with Swedish and Australian cohorts of children with CP. We used the χ2 test and linear regression models to analyse differences between groups.RESULTS: Younger children were more severely impaired than older children. Two-fifths of the children had severe impairments in communication, about half had intellectual disability, and one third had seizures. Of 37 non-walking children, three had wheelchairs and none had walkers. No children had assistive devices for hearing, seeing, or communication. Care-seeking was low relating to lack of knowledge, insufficient finances, and 'lost hope'. One-third of the children attended school. Ugandan children exhibited lower developmental trajectories of mobility and self-care than a Swedish cohort.INTERPRETATION: The needs for children with CP in rural Uganda are not met, illustrated by low care-seeking, low access to assistive devices, and low school attendance. A lack of rehabilitation and stimulation probably contribute to the poor development of mobility and self-care skills. There is a need to develop and enhance locally available and affordable interventions for children with CP in Uganda.WHAT THIS PAPER ADDS: Development of mobility and self-care skills is lower in Ugandan than Swedish children with cerebral palsy (CP). Older children in Uganda with CP are less impaired than younger children. Untreated seizures and impairments of communication and intellect are common. Access to health services, assistive devices, and education is low. Caregivers lack knowledge and finances to seek care and often lose hope of their child improving.
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| 4. |
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| 5. |
- Ashish, K. C., et al.
(författare)
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A longitudinal multi-centric cohort study assessing infant neurodevelopment delay among women with persistent postpartum depression in Nepal
- 2024
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Ingår i: BMC Medicine. - : BioMed Central (BMC). - 1741-7015. ; 22:1
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundInfant neurodevelopment in the first years after birth is determined by multiple factors, including parental care and maternal mental wellbeing. In this study, we aim to assess the impact of persistent maternal depressive symptoms during the first 3 months postpartum on infant neurodevelopment at 6 months.MethodsUsing a longitudinal cohort design, 1253 mother-infant pairs were followed up at 7, 45, and 90 days to assess postpartum depressive symptoms using the Edinburgh Postnatal Depression Scale (EPDS); infants were followed up at 6 months to assess neuro-developmental status using the WHO's Infant and Young Child Development (IYCD) tool. A generalized linear regression model was used to assess the association between persistent postpartum depressive symptoms and infant neurodevelopmental delay at 6 months. A generalized linear mixed model (GLMM) with a hospital as a random intercept was used to assess the persistent postpartum depressive symptoms with an IYCD score. Linear regression was used to compare the IYCD scores between exposure groups.ResultsIn the study population, 7.5% of mothers had persistent depressive symptoms, and 7.5% of infants had neurodevelopmental delay. Infants born to mothers with persistent depressive symptoms had a higher proportion of neurodevelopmental delay than infants born to women without persistent symptoms (48.6% vs 5.1%; p < 0.001). In the adjusted regression model, infants whose mothers had persistent depressive symptoms at 7, 45, and 90 days had a 5.21-fold increased risk of neurodevelopmental delay (aRR, 5.21; 95% CI, 3.17, 8.55). Mean scores in the motor domain (12.7 vs 15.2; p < 0.001) and language domain (6.4 vs 8.5; p < 0.001) were significant when a mother had persistent depression vs. no depression. Mean scores in the general behavioral domain (5.9 vs 10.4, p < 0.001) and the socio-emotional domain (15.4 vs 17.7; p < 0.001) were significantly different when a mother had persistent depression vs no persistent depression.ConclusionsOur results suggest that 6-month-old infants are at higher risk for neurodevelopment delays if their mother reports persistent symptoms of depression from 7 to 90 days postpartum. The neurodevelopmental delay can be observed in all functional domains. Preventive intervention to reduce maternal postpartum depression may reduce the impact on infant developmental delay.
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| 6. |
- Farnham, Andrea, et al.
(författare)
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Early career researchers want Open Science
- 2017
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Ingår i: Genome Biology. - : Springer Science and Business Media LLC. - 1474-7596 .- 1474-760X. ; 18:1
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Tidskriftsartikel (refereegranskat)abstract
- Open Science is encouraged by the European Union and many other political and scientific institutions. However, scientific practice is proving slow to change. We propose, as early career researchers, that it is our task to change scientific research into open scientific research and commit to Open Science principles.
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| 7. |
- Kakooza-Mwesige, Angelina, et al.
(författare)
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Prevalence of cerebral palsy in Uganda : a population-based study
- 2017
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Ingår i: The Lancet Global Health. - : Elsevier. - 2214-109X. ; 5:12, s. e1275-e1282
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Few population-based studies of cerebral palsy have been done in low-income and middle-income countries. We aimed to examine cerebral palsy prevalence and subtypes, functional impairments, and presumed time of injury in children in Uganda.METHODS: In this population-based study, we used a nested, three-stage, cross-sectional method (Iganga-Mayuge Health and Demographic Surveillance System [HDSS]) to screen for cerebral palsy in children aged 2-17 years in a rural eastern Uganda district. A specialist team confirmed the diagnosis and determined the subtype, motor function (according to the Gross Motor Function Classification System [GMFCS]), and possible time of brain injury for each child. Triangulation and interviews with key village informants were used to identify additional cases of suspected cerebral palsy. We estimated crude and adjusted cerebral palsy prevalence. We did χ2 analyses to examine differences between the group screened at stage 1 and the entire population and regression analyses to investigate associations between the number of cases and age, GMFCS level, subtype, and time of injury.FINDINGS: We used data from the March 1, 2015, to June 30, 2015, surveillance round of the Iganga-Mayuge HDSS. 31 756 children were screened for cerebral palsy, which was confirmed in 86 (19%) of 442 children who screened positive in the first screening stage. The crude cerebral palsy prevalence was 2·7 (95% CI 2·2-3·3) per 1000 children, and prevalence increased to 2·9 (2·4-3·6) per 1000 children after adjustment for attrition. The prevalence was lower in older (8-17 years) than in younger (<8 years) children. Triangulation added 11 children to the cohort. Spastic unilateral cerebral palsy was the most common subtype (45 [46%] of 97 children) followed by bilateral cerebral palsy (39 [40%] of 97 children). 14 (27%) of 51 children aged 2-7 years had severe cerebral palsy (GMFCS levels 4-5) compared with only five (12%) of 42 children aged 8-17 years. Few children (two [2%] of 97) diagnosed with cerebral palsy were born preterm. Post-neonatal events were the probable cause of cerebral palsy in 24 (25%) of 97 children.INTERPRETATION: Cerebral palsy prevalence was higher in rural Uganda than in high-income countries (HICs), where prevalence is about 1·8-2·3 cases per 1000 children. Children younger than 8 years were more likely to have severe cerebral palsy than older children. Fewer older children than younger children with cerebral palsy suggested a high mortality in severely affected children. The small number of preterm-born children probably resulted from low preterm survival. About five times more children with post-neonatal cerebral palsy in Uganda than in HICs suggested that cerebral malaria and seizures were prevalent risk factors in this population.FUNDING: Swedish Research Council, Promobilia.
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| 8. |
- Namaganda, Lukia H., et al.
(författare)
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Excessive premature mortality among children with cerebral palsy in rural Uganda : A longitudinal, population-based study
- 2020
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Ingår i: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 15:12
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundStudies from high-income countries reported reduced life expectancy in children with cerebral palsy (CP), while no population-based study has evaluated mortality of children with CP in sub-Saharan Africa. This study aimed to estimate the mortality rate (MR) of children with CP in a rural region of Uganda and identify risk factors and causes of death (CODs).Methods and findingsThis population-based, longitudinal cohort study was based on data from Iganga-Mayuge Health and Demographic Surveillance System in eastern Uganda. We identified 97 children (aged 2-17 years) with CP in 2015, whom we followed to 2019. They were compared with an age-matched cohort from the general population (n = 41 319). MRs, MR ratios (MRRs), hazard ratios (HRs), and immediate CODs were determined. MR was 3952 per 100 000 person years (95% CI 2212-6519) in children with CP and 137 per 100 000 person years (95% CI 117-159) in the general population. Standardized MRR was 25 center dot 3 in the CP cohort, compared with the general population. In children with CP, risk of death was higher in those with severe gross motor impairments than in those with milder impairments (HR 6 center dot 8; p = 0 center dot 007) and in those with severe malnutrition than in those less malnourished (HR = 3 center dot 7; p = 0 center dot 052). MR was higher in females in the CP cohort, with a higher MRR in females (53 center dot 0; 95% CI 26 center dot 4-106 center dot 3) than in males (16 center dot 3; 95% CI 7 center dot 2-37 center dot 2). Age had no significant effect on MR in the CP cohort, but MRR was higher at 10-18 years (39 center dot 6; 95% CI 14 center dot 2-110 center dot 0) than at 2-6 years (21 center dot 0; 95% CI 10 center dot 2-43 center dot 2). Anaemia, malaria, and other infections were the most common CODs in the CP cohort.ConclusionsRisk of premature death was excessively high in children with CP in rural sub-Saharan Africa, especially in those with severe motor impairments or malnutrition. While global childhood mortality has significantly decreased during recent decades, this observed excessive mortality is a hidden humanitarian crisis that needs to be addressed.
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