Caring for children with disabilities in Kilifi, Kenya: what is the carer's experience?

BACKGROUND: Carers of children with disabilities have repeatedly highlighted their feelings of discrimination, stigma and exclusion in many domains of their lives. There is little research from Africa addressing these issues. This study investigated the challenges encountered by these carers and the mechanisms of coping with these challenges while caring for children with disabilities in a poor rural setting in Kenya. METHODS: Thirty-five in-depth interviews were conducted with 20 carers, 10 community members and 5 primary school teachers. Ten unstructured observations were also conducted in home environments to observe mechanisms used in meeting the needs of the children with disabilities. All interviews were tape-recorded, transcribed and translated from the local dialect. Note-taking was performed during all the observations. Data were stored in NVivo software for easy retrieval and management. RESULTS: The arrival of a disabled child severely impairs the expectations of carers. Hospital staff underestimate carers' emotional distress and need for information. Fear for the future, stress, rumour-mongering and poverty are encountered by carers. As they grapple with lost expectations, carers develop positive adaptations in the form of learning new skills, looking for external support and in some cases searching for cure for the problem. For their emotional stability, carers apply spiritual interventions and sharing of experiences. CONCLUSION: Despite the challenges faced by the carers, values and priorities in adaptation to the challenges caused by the child's disability were applied. It is recommended that these experiences are considered as they may influence programmes that address the needs of children with disabilities.

Prevalence, incidence and risk factors of epilepsy in older children in rural Kenya.

BACKGROUND: There is little data on the burden or causes of epilepsy in developing countries, particularly in children living in sub-Saharan Africa. METHODS: We conducted two surveys to estimate the prevalence, incidence and risk factors of epilepsy in children in a rural district of Kenya. All children born between 1991 and 1995 were screened with a questionnaire in 2001 and 2003, and those with a positive response were then assessed for epilepsy by a clinician. Active epilepsy was defined as two or more unprovoked seizures with one in the last year. RESULTS: In the first survey 10,218 children were identified from a census, of whom 110 had epilepsy. The adjusted prevalence estimates of lifetime and active epilepsy were 41/1000 (95% CI: 31-51) and 11/1000 (95% CI: 5-15), respectively. Overall two-thirds of children had either generalized tonic-clonic and/or secondary generalized seizures. A positive history of febrile seizures (OR=3.01; 95% CI: 1.50-6.01) and family history of epilepsy (OR=2.55; 95% CI: 1.19-5.46) were important risk factors for active epilepsy. After the second survey, 39 children from the same birth cohort with previously undiagnosed epilepsy were identified, thus the incidence rate of active epilepsy is 187 per 100,000 per year (95% CI: 133-256) in children aged 6-12 years. CONCLUSIONS: There is a considerable burden of epilepsy in older children living in this area of rural Kenya, with a family history of seizures and a history of febrile seizures identified as risk factors for developing epilepsy.

Identifying children with neurological impairment and disability in resource-poor countries.

BACKGROUND: The burden of neurological impairment (NI) in children living in resource-poor countries (RPCs) is unknown. This lack of data is caused by inappropriate case detection techniques. In RPCs, the most appropriate method should be inexpensive, simple, rapid and accurate. This article reviews methods used to identify children with NI and disability in RPCs, evaluating their effectiveness and suitability. METHODS: A search of relevant articles was performed using the National Library of Medicine via PubMed and Medline search engines. In addition, bibliographies of reviews were also browsed to identify additional articles, particularly those from World Health Organization and United Nations sources and from government and unpublished reports. Key phrases used included impairment, disability or handicap and the following terms: identification, screening, prevalence and developing countries. Studies included were those that fulfilled the following criteria; performed in RPCs, presented data in detail to allow reanalysis and provided data on cost and validity of the methods. RESULTS: Use of the national census, key informants and methods using rapid rural appraisal have low sensitivity and are not able to provide adequate information on diagnostic categories or risk factors. House-to-house surveys using questionnaires have high sensitivities (63-100%) in the detection of impairment, but this approach remains relatively expensive and cannot be applied to an entire population (e.g. a region or country) and is thus less useful for assessing the needs of disability. Furthermore, the sensitivity is decreased in the detection of some domains, e.g. cognition. CONCLUSIONS: Most of the approaches used for identifying individuals with NI or disability suffer from inadequacies, the main ones being low sensitivity and underreporting. To assess the burden, nationwide censuses combined with surveys in selected areas of the country may be useful. These systems, however, require validation to establish their suitability.

Prevalence and risk factors of neurological disability and impairment in children living in rural Kenya.

BACKGROUND: There is little data on the burden of neurological impairment (NI) in developing countries, particularly in children of Africa. METHODS: We conducted a survey of NI in children aged 6-9 years in a rural district of Kenya. First, we screened for neurological disability by administering the Ten Questions Questionnaire (TQQ) to parents/guardians of children in a defined population. In phase two, we performed a comprehensive clinical and psychological assessment on children who tested positive on TQQ and on a similar number of children who tested negative. RESULTS: A total of 10 218 children were screened, of whom 955 (9.3%) were positive on TQQ. Of these, 810 (84.8%) were assessed, and of those who tested negative 766 (8.3%) were assessed. The prevalence for moderate/severe NI was 61/1000 [95% confidence interval (95% CI) 48-74]. The most common domains affected were epilepsy (41/1000), cognition (31/1000), and hearing (14/1000). Motor (5/1000) and vision (2/1000) impairments were less common. Of the neurologically impaired children (n = 251), 56 (22%) had more than one impairment. Neonatal insults were found to have a significant association with moderate/severe NI in both the univariate [odds ratio (OR) = 1.70; 95% CI 1.12-2.47] and multivariate analyses (OR = 1.30; 95% CI 1.09-1.65). CONCLUSIONS: There is a considerable burden of moderate/severe NI in this area of rural Kenya, with epilepsy, cognition, and hearing being the most common domains affected. Neonatal insults were identified as an important risk factor.

Persistent neurocognitive impairments associated with severe falciparum malaria in Kenyan children.

OBJECTIVES: There is little information on the characteristics of persisting impairments associated with severe forms of falciparum malaria. Previous work has suggested the existence of a group of children with particularly poor performance on neurocognitive assessments in the context of average group performance. The aim of this study was to provide a detailed characterisation of impairments in this subgroup. METHODS: Three groups of children were recruited: children admitted up to nine years earlier with cerebral malaria (CM) (n = 152), malaria and complicated seizures (M/S) (n = 156), or those unexposed to either condition (n = 179). Each child underwent a series of developmental assessments. Standard definitions were used to classify impairment. RESULTS: Twenty-four percent of the CM and M/S groups had at least one impairment in the major domains assessed in the study, compared with 10% of the unexposed group. CM was associated with a higher proportion of multiple impairments and an increased risk of mortality in the first year after recovery in those identified with impairments on discharge. CONCLUSIONS: After severe malaria, some children have neurocognitive impairments that are evident as long as nine years later. Impairments may become more evident as children progress and face more complex cognitive and linguistic demands, socially and educationally. The child's neurological status at discharge was not a good predictor of later neurocognitive impairment. This highlights the importance of follow up for children with severe malaria and the involvement of therapists and educators in the provision of services for this population.

Validity and reliability of the 'Ten Questions' questionnaire for detecting moderate to severe neurological impairment in children aged 6-9 years in rural Kenya.

BACKGROUND: The 'Ten Questions' Questionnaire (TQQ) is used to detect severe neurological impairment in children living in resource-poor countries. Its usefulness has been established in Asia and the Caribbean, but there are a few published studies from Africa. We evaluated the TQQ as part of a larger study of neurological impairment in a rural community, on the coast of Kenya. METHODS: The study was conducted in two phases from June 2001 to May 2002; in phase one, a community household screening of 10,218 children aged 6-9 years using the TQQ was performed. Phase two involved a comprehensive clinical and psychological assessment of all children testing positive on the TQQ (n = 810) and an equivalent number of those testing negative (n = 766). Data were interpreted using the impairment-specific approach. RESULTS: Overall, the sensitivity rates for screening the different impairments were: cognitive (70.0%), motor (71.4%), epilepsy (100%), hearing (87.4%) and visual (77.8%). All the specificity rates were greater than 96%. However, the positive predictive values were low, and ranged from 11 to 33%. CONCLUSIONS: These results are similar to those from other continents and provide evidence that the TQQ can be used to compare the epidemiology of moderate/severe impairment in different parts of the world. Furthermore, the TQQ can be used to screen for moderately/severely impaired children in resource-poor countries; however, the low positive predictive values mean that other assessments are required for confirmation.

Speech and language sequelae of severe malaria in Kenyan children.

PRIMARY OBJECTIVE: To conduct a preliminary investigation into the occurrence of speech and language impairments following severe malaria in Kenyan children. RESEARCH DESIGN: Cohort study comparing the prevalence of impairments in children exposed or unexposed to severe malaria. METHODS AND PROCEDURES: The study recruited 25 children who had previously been admitted to hospital with severe falciparum malaria and 27 unexposed to the disease. Assessments of comprehension, syntax, lexical semantics, higher level language abilities, pragmatics and phonology were administered to each child at 8-9 years of age, at least 2 years after admission to hospital in children exposed to severe malaria. MAIN OUTCOMES AND RESULTS: Exposed children were found to have lower scores on each assessment and significantly lower scores on four aspects of language ability: comprehension (p = 0.02); syntax (p = 0.02); content words (p = 0.02) and function words (p = 0.004) components of lexical semantics. CONCLUSIONS: These data suggest that speech and language deficits may be an important and under-recognized sequela of severe falciparum malaria.

Maternal mobility across the rural-urban divide: empirical data from coastal Kenya.

This paper describes the mobility patterns, rural-urban linkages and household structures for a low-income neighbourhood on the outskirts of Mombasa, Kenya's main port, and a rural settlement 60 kilometres away. Drawing on interviews with a sample of mothers resident in each location, it documents their perceptions of the advantages and disadvantages of rural and urban life, and shows the continuous interchange between the two areas. It also highlights how most rural to urban migrants are familiar with urban environments before moving and how, having moved, many maintain strong rural ties. The ways in which households are split across rural and urban areas is influenced by intra-household relations and by household efforts to balance the income-earning opportunities in town, the relatively low cost of living in rural areas and future family security. This produces dramatic differences between and among rural and urban mothers and suggests a need for policy makers and planners to recognize diversity and to build upon complex livelihood strategies that span the rural-urban divide.

Brain damage after neonatal tetanus in a rural Kenyan hospital.

OBJECTIVE: Neonatal tetanus (NNT) is an important cause of mortality in resource poor countries, particularly sub-Saharan Africa. There are no reports of the long-term outcome of children who survive NNT in African hospitals. DESIGN: In a retrospective study of children discharged from Kilifi District Hospital (KDH), Kenya with NNT, each child was linked with a comparative child (CC) in the community matched for age, sex and locality. PARTICIPANTS: A total of 123 patients were admitted with NNT between 1992 and 1996, of whom 68% died. Twenty-three (59%) of the 39 survivors were traced in the community, 10 had moved away, six had died. OUTCOME MEASURES: NNT survivors underwent a neurological and developmental examination and a questionnaire was administered to the parents about the behaviour of the child. A verbal autopsy was used to determine the cause of death in children who had died after discharge. RESULTS: The head circumference of NNT survivors was significantly smaller than that of CC (P=0.037); eight children had microcephaly compared with one CC (P=0.011). NNT survivors had more problems with hand-eye co-ordination tasks (P=0.035), a lower summated developmental score (P=0.023) and more mild neurological abnormalities (P=0.008) than CC. Parents of NNT survivors reported more behavioural problems (P=0.02) than parents of CC. CONCLUSIONS: Children who survive NNT have evidence of brain damage that manifests as microcephaly, mild neurological abnormalities, developmental impairment - particularly fine motor difficulties - and behaviour problems.

Paediatric survival and re-admission risks following hospitalization on the Kenyan coast.

The district general hospital (DGH) is a common feature of health service provision in many developing countries. We have used linked demographic and clinical surveillance in a rural community located close to a DGH on the Kenyan coast to define the use and public health significance of essential clinical services provided by it. Of a birth cohort of over 4000 children followed for approximately 6 years, about a third were admitted to hospital at least once. Significantly more children admitted with major infectious diseases such as malaria and acute respiratory tract infections were readmitted with the same condition during the surveillance period than would have been expected by chance. Among surviving admissions, mortality post-discharge was significantly higher than in the cohort which had not been admitted within 3, 6 and 12 months. Most of the patients who died after discharge had been admitted with a diagnosis of gastroenteritis. Most children admitted to the DGH survive hospitalization and the remaining period of childhood. Despite no clinical trial evidence to support the claim, it seems reasonable to assume that in the absence of intensive clinical management provided by a DGH, a significant proportion of these children would not have survived. However, the DGH is able to define a group of at-risk children who re-present with severe complications of infectious disease, and of these several may have underlying conditions not amenable to DGH intervention and continue to have a poor prognosis. Both groups of children represent statistically significant subsets of a rural paediatric community and the future organization and co-ordination of DGH and primary care services need to work in unison to strengthen the service needs of children at risk.

Maternal responses to childhood fevers: a comparison of rural and urban residents in coastal Kenya.

Urbanization is an important demographic phenomenon in sub-Saharan Africa, and rural-urban migration remains a major contributor to urban growth. In a context of sustained economic recession, these demographic processes have been associated with a rise in urban poverty and ill health. Developments in health service provision need to reflect new needs arising from demographic and disease ecology change. In malaria-endemic coastal Kenya, we compared lifelong rural (n = 248) and urban resident (n = 284) Mijikenda mothers' responses to childhood fevers. Despite marked differences between the rural and urban study areas in demographic structure and physical access to biomedical services, rural and urban mothers' treatment-seeking patterns were similar: most mothers sought only biomedical treatment (88%). Shop-bought medicines were used first or only in 69% of the rural and urban fevers that were treated, and government or private clinics were contacted in 49%. A higher proportion of urban informal vendors stocked prescription-only drugs, and urban mothers more likely to contact a private than a government facility. We conclude that improving self-treatment has enormous potential to reduce morbidity and mortality in low-income urban areas, as has frequently been argued for rural areas. However, because of the underlying socio-economic, cultural and structural differences between rural and urban areas, rural approaches to tackle this may have to be modified in urban environments.