Health beliefs regarding pediatric cerebral palsy among caregivers in Botswana: A qualitative study

Patel, Payal; Baier, James; Baranov, Esther; Khurana, Esha; Gambrah-Sampaney, Claudia; Johnson, Andrea C; Monokwane, Baphaleng; Bearden, David

doi:10.1111/cch.12490

Cited by 17 publications

(17 citation statements)

References 19 publications

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“…Typically developing children are increasingly more independent but children with severe CP are not. Caregivers face many challenges, such as stigma and negative attitudes, when caring for their child and often lack knowledge of their child's condition or prognosis and are fearful of the future [11,[34][35][36]. Additionally, caregivers are typically overburdened with numerous tasks, including household chores, farming, and caring for other children.…”

Section: Plos Onementioning

confidence: 99%

“…There are enormous challenges studying the epidemiology of children with CP in rural sub-Saharan Africa such as lack of population registers, poorly enacted laws and policies regarding their specific needs and rights, stigma and marginalization of children with disabilities [34][35][36]. The unique strength of this study was the utilization of the IM-HDSS, which performs annual surveys registering child birth and child death and with a validated system determining the COD through verbal autopsies.…”

Section: Strengths and Limitationsmentioning

confidence: 99%

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Excessive premature mortality among children with cerebral palsy in rural Uganda: A longitudinal, population-based study

et al. 2020

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Background Studies 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 findings This 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 25·3 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 6·8; p = 0·007) and in those with severe malnutrition than in those less malnourished (HR = 3·7; p = 0·052). MR was higher in females in the CP cohort, with a higher MRR in females (53·0; 95% CI 26·4–106·3) than in males (16·3; 95% CI 7·2–37·2). Age had no significant effect on MR in the CP cohort, but MRR was higher at 10–18 years (39·6; 95% CI 14·2–110·0) than at 2–6 years (21·0; 95% CI 10·2–43·2). Anaemia, malaria, and other infections were the most common CODs in the CP cohort. Conclusions Risk 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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Section: Plos Onementioning

confidence: 99%

Section: Strengths and Limitationsmentioning

confidence: 99%

Excessive premature mortality among children with cerebral palsy in rural Uganda: A longitudinal, population-based study

et al. 2020

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“…Thus, implementation of community-based rehabilitation should help to lower the risk of stigmatizing children with disability and their parents. 13,14 Financial impediments for most parents in seeking medical care, together with stigmatization, are factors likely to induce biases in hospital-based studies conducted in low-income countries such as Benin. 15 Indeed, such factors might bring about overrepresentation of high-need children, whose parents possess sufficient financial resources to obtain medical care.…”

mentioning

confidence: 99%

A Cross-sectional Study of the Clinical Profile of Children With Cerebral Palsy in Benin, a West African Low-Income Country

et al. 2019

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Cerebral palsy is a common cause of pediatric motor disability. Although there are increasing amounts of data on the clinical profile of children with cerebral palsy in high-income countries, corresponding information about low-income countries and developing countries is lacking. Therefore, we aimed to describe the clinical spectrum of cerebral palsy in children in Benin, a representative West African low-income country. Our cross-sectional observational study included 114 children with cerebral palsy recruited from community-based rehabilitation centers and teaching hospitals (median age: 7 years, range 2-17; sex: 66% male). Data were collected through review of medical records and interviews with children’s mothers. Assessment included risk factors, clinical subtypes according to the Surveillance of CP in Europe criteria, severity of motor outcome scored by the Gross Motor Function Classification System (GMFCS) and Manual Ability Classification System, comorbidities, and school attendance. We recorded a high prevalence of intrapartum adverse events. Seventeen percent of children had postneonatal cerebral palsy, with cerebral malaria being the most common cause. Most children were severely affected (67.5% as bilateral spastic; 54.4% as GMFCS IV or V), but severity declined substantially with age. Only 23% of the children with cerebral palsy had attended school. Poor motor outcomes and comorbidities were associated with school nonattendance. These results suggest that intrapartum risk factors and postnatal cerebral malaria in infants are opportune targets for prevention of cerebral palsy in Sub-Saharan low-income countries.

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“…4,15 As is the case with epilepsy, there may be substantial stigma attached to having a family member with cerebral palsy, resulting in decreased service utilization and fewer educational opportunities for patients with cerebral palsy. 68 Lack of services and support combined with stigma may also result in substantially higher rates of malnutrition in children with cerebral palsy in low-resource settings. 69…”

Section: Cerebral Palsymentioning

confidence: 99%

“…In addition, there may be hesitancy on the part of both parents and medical care providers to provide feeding tubes to children with neurologic disorders, as stigma regarding neurologic disorders may make parents hesitant to have outward signs of a disability such as a feeding tube. 68 A summary of commonly encountered nutritional disorders presenting with neurologic manifestations is presented in ►Table 1.…”

Section: Nutritional Disordersmentioning

confidence: 99%

Global Health: Pediatric Neurology

Bearden¹,

Ciccone

Patel

2018

Semin Neurol

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Neurologic disorders contribute significantly to both morbidity and mortality among children in resource-limited settings, but there are a few succinct studies summarizing the epidemiology of neurologic disorders in these settings. A review of available literature was performed to identify data on the prevalence, etiology, outcomes, and treatment of neurologic disorders in children in resource-limited settings. The burden of neurologic disorders in children is high in resource-limited settings. Barriers to optimal care include lack of trained personnel, limited access to diagnostic technology, and limited availability of drugs used to treat common conditions. Several solutions have been suggested to deal with these challenges including increased collaborations to train neurologists willing to practice in resource-limited settings and increased training of physician extenders or community health workers. Further studies are necessary to improve our understanding of the epidemiology of neurologic disorders in resource-limited settings. Future epidemiologic studies should incorporate multiple countries in resource-limited settings and utilize standardized definitions and methodologies to enable comparison across regions.

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Health beliefs regarding pediatric cerebral palsy among caregivers in Botswana: A qualitative study

Abstract: Health beliefs regarding CP in Botswana likely have a significant impact on utilization of healthcare resources. Information from this study should inform future educational interventions for caregivers of children with CP.

Cited by 17 publications

References 19 publications

Excessive premature mortality among children with cerebral palsy in rural Uganda: A longitudinal, population-based study

Excessive premature mortality among children with cerebral palsy in rural Uganda: A longitudinal, population-based study

A Cross-sectional Study of the Clinical Profile of Children With Cerebral Palsy in Benin, a West African Low-Income Country

Global Health: Pediatric Neurology

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