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Introduction: The precise epidemiological burden of autism is unknown because of the limited capacity to identify and diagnose the disorder in resource-constrained settings, related in part to a lack of appropriate standardised assessment tools and health care experts. We assessed the reliability, validity, and diagnostic accuracy of the Developmental Diagnostic Dimensional Interview (3Di) in a rural setting on the Kenyan coast. Methods: Using a large community survey of neurodevelopmental disorders (NDDs), we administered the 3Di to 2,110 children aged between 6 years and 9 years who screened positive or negative for any NDD and selected 242 who had specific symptoms suggestive of autism based on parental report and the screening tools for review by a child and adolescent psychiatrist. On the basis of recorded video, a multi-disciplinary team applied the Autism Diagnostic Observation Schedule to establish an autism diagnosis. Internal consistency was used to examine the reliability of the Swahili version of the 3Di, tetrachoric correlations to determine criterion validity, structural equation modelling to evaluate factorial structure and receiver operating characteristic analysis to calculate diagnostic accuracy against Diagnostic Statistical Manual of Mental Disorders (DSM) diagnosis. Results: The reliability coefficients for 3Di were excellent for the entire scale {McDonald’s omega (ω) = 0.83 [95% confidence interval (CI) 0.79–0.91]}. A higher-order three-factor DSM-IV-TR model showed an adequate fit with the model, improving greatly after retaining high-loading items and correlated items. A higher-order two-factor DSM-5 model also showed an adequate fit. There were weak to satisfactory criterion validity scores [tetrachoric rho = 0.38 (p = 0.049) and 0.59 (p = 0.014)] and good diagnostic accuracy metrics [area under the curve = 0.75 (95% CI: 0.54–0.96) and 0.61 (95% CI: 0.49–0.73] for 3Di against the DSM criteria. The 3Di had a moderate sensitivity [66.7% (95% CI: 0.22–0.96)] and a good specificity [82.5% (95% CI: 0.74–0.89)], when compared with the DSM-5. However, we observed poor sensitivity [38.9% (95% CI: 0.17–0.64)] and good specificity [83.5% (95% CI: 0.74–0.91)] against DSM-IV-TR. Conclusion: The Swahili version of the 3Di provides information on autism traits, which may be helpful for descriptive research of endophenotypes, for instance. However, for accuracy in newly diagnosed autism, it should be complemented by other tools, e.g., observational clinical judgment using the DSM criteria or assessments such as the Autism Diagnostic Observation Schedule. The construct validity of the Swahili 3Di for some domains, e.g., communication, should be explored in future studies. [ABSTRACT FROM AUTHOR]

Background: Rehabilitation services are scarce in low-income countries, where under-representation of some specialist professions has led to the role extension of others. An example of this can be found in Kilifi in Kenya where the role of speech and language therapy has been taken on by occupational therapists and teachers. Aims: To investigate the communication practices used by these professional groups to support children with complex communication needs in a rural part of Kenya and to explore the ways in which this might be seen to facilitate or obstruct improved communication by asking the following questions: What are the critical features of interactional discourse in practitioner-child dyads with caregiver-child dyads providing a natural comparison? What communicative modalities and practice techniques are invoked? And how does this information relate to extending professional roles? Methods & Procedures: An in-depth, descriptive study of a case series was conducted in a school for deaf children and the occupational therapy department of a district general hospital. A mixed methodology was used involving naturalistic observation and applied linguistics analysis. A convenience sample was established comprising six practitioner-child dyads assigned to partnership types: (A) three children with hearing impairment and their teachers; and (B) three children with cerebral palsy and their occupational therapists. As a natural comparator, the same three children in B were also observed with their mothers (partnership type C). Dyadic interaction was video recorded on three occasions. The video data were sampled, transcribed into standard orthography and translated. Codes were applied to determine turn structure, linguistic move types and communicative modalities. Sequential analysis was conducted on the move types. Outcomes & Results: Partnership type A dyads showed a fairly even turn distribution between teacher and child. A common pattern was teacher-initiated "Instruct" and "Model/Prompt", followed by child response in the form of an "Action". The most frequently used modality was "Sound Production" and "Hands-on-Articulators", which corresponded to articulation drill practice. Partnership type B dyads revealed a tendency towards adult domination of turns. The majority of adult-initiated moves required no response from the child. The practice technique "Hands-on-Articulators" involved manipulating the oral musculature of the child. Partnership type C dyads showed resonances of type B dyads, although focused more on "Motor-Action" in relation to task performance. Conclusions & Implications: The assignment of speech and language therapy duties to teachers and occupational therapists has resulted in suboptimal practice for children with complex communication needs.

Background: There is an increasing demand for the assessment of speech and language in clinical and research situations in countries where there are few assessment resources. Due to the nature of cultural variation and the potential for cultural bias, new assessment tools need to be developed or existing tools require adaptation. However, there are few guidelines on how to develop "culturally appropriate" assessment tools. Aims: To review the literature on cross-cultural assessment in order to identify the major issues in the development and adaptation of speech and language assessments for children and to illustrate these issues with practical examples from our own research programme in Kenya. Methods & Procedures: Five broad categories pertaining to cross-cultural assessment development were identified: the influence of culture on performance, familiarity with the testing situation, the effect of formal education, language issues and picture recognition. It was outlined how some of these issues were addressed in our research. The results of the review were integrated to produce a list of ten guidelines highlighting the importance of collaboration with mother tongue speakers; piloting; familiar assessment materials; assessment location; and practice items and prompts. Conclusions: There are few clinicians and assessors, whether in the UK or abroad, who do not assess or treat children from a culture different to their own. Awareness of cultural variation and bias and cooperative efforts to develop and administer culturally appropriate assessment tools are the foundation of effective, valid treatment programmes.

Background: Little is known about the educational experiences of children diagnosed with autism spectrum disorders (ASDs) in the Kenyan Coastal context. Objectives: We examined the diagnostic and placement procedures used in education on the Kenyan coastal region. In addition, we investigated the education-related challenges faced by children with ASD. Methods: We conducted focus group discussions and in-depth interviews with 21 participants, including teachers, clinicians and educational administrators. Data were analysed using an inductive thematic framework on qualitative data analysis software, NVIVO 10. Results: The findings from this study indicate that there were no systematic approaches to diagnosing children as having ASD. Teachers reported experiencing many challenges, including a lack of specialised training, inadequate resources and difficulty in managing children with different functional abilities in one class. Conclusion: There is an urgent need for contextually relevant evidence-based identification, placement and management services to be put in place to meet the educational needs of children with ASD. [ABSTRACT FROM AUTHOR]

Bringing up a child with disabilities in a low-income setting is challenged by inadequate resources, limited psycho-social support and poverty. Not surprisingly, many caregivers experience fatigue, distress and isolation. To address and investigate these issues, action was taken to set up twenty self-help groups focusing on caregiver empowerment. A realist evaluation design was adopted to evaluate impacts associated with the self-help process and to identify mechanisms determining the outcomes. Monthly monitoring visits were conducted to the groups during a ten-month set-up period, at the end of which eleven active groups remained, nine having dissolved due to disputes, corruption and extreme environmental conditions. A facilitated intervention was delivered to the active groups (N = 154) over a six-month period. The members were guided to review and discuss topics such as economic empowerment, personal situation, peer support, community inclusion, access to health and education. Evaluation employed mixed methods using questionnaires (n = 75) and semi-structured interviews (n = 36) pre- and post-intervention. At baseline, the burden of caregiving was characterised by aloneness, challenges, stigma and discrimination. Post-intervention, caregiver agency was defined by togetherness, capacity-building, acceptance and well-being. Significant impacts associated with caregiver perceptions included increased social support, reduced severity of child's disability and decreased effects of extrinsic factors affecting the caregiver's role. Mechanisms of 'handling goods and money' and 'social ties and support' appeared to underpin the outcomes. Caregiver empowerment was associated with newly developed skills, social connectedness and resource mobilisation. Documentation of group processes contributes to the evidence on community-based inclusive development. [ABSTRACT FROM AUTHOR]

Background: Over 75% of people with mental neurological and substance use disorders (MNSD) live in low and middle-income countries with limited access to specialized care. The World Health Organization’s Mental Health Gap Action Program (mhGAP) aims to address the human resource gap but it requires contextualization. Aims: We conducted a qualitative study in rural coastal Kenya to explore the local terms, perceived causes and management modalities of priority MNSD listed in the mhGAP, to inform implementation in this setting. Methods: We conducted 8 focus group discussions with primary health care providers and traditional health practitioners and used the framework method to conduct thematic analysis. We identified local terms, perceived causes and treatment options for MNSD. We also explored possibilities for collaboration between the traditional health practitioners and primary health care providers. Results: We found local terms for depression, psychoses, epilepsy, disorders due to substance use and self-harm/ suicide but none for dementia. Child and adolescent mental and behavioral problems were not regarded as MNSD but consequences of poor parenting. Self-harm/suicide was recognized in the context of other MNSD. Causes of MNSD were broadly either biological or supernatural. Treatment options were dependent on perceived cause of illness. Most traditional health practitioners were willing to collaborate with primary health care providers mainly through referring cases. Primary health care providers were unwilling to collaborate with traditional health practitioners because they perceived them to contribute to worsening of patients’ prognoses. Conclusions: Local terms and management modalities are available for some priority MNSD in this setting. Community level case detection and referral may be hindered by lack of collaboration between traditional health practitioners and primary health care providers. There is need for training on the recognition and management of all priority MNSD. [ABSTRACT FROM AUTHOR]

Background: The upsurge in the uptake of antiretroviral therapy (ART) has led to a significant increase in the survival of vertically acquired HIV infected children, many of whom are currently living into adolescence and early adulthood. However little if anything is known of the lived experiences and the challenges faced by HIV positive adolescents in the African context. We set out to investigate psychosocial challenges faced by HIV infected adolescents on the Kenyan coast.Methods: A total of 44 participants (12 HIV-infected adolescents, 7 HIV uninfected adolescents, and 25 key informants) took part in this qualitative study, using individually administered in-depth interviews. A framework approach was used to analyze the data using NVIVO software.Results: We observed that the challenges faced by adolescents in rural Kenya could be placed into six major themes: poverty, poor mental and physical health, the lack of a school system that is responsive to their needs, challenges in how to disclose to peers and family members, high levels of stigma in its various forms, and challenges of medical adherence leading to the need for close monitoring.Conclusion: In this African community, vertically acquired HIV-infected adolescents face a complex set of social, economic and medical challenges. Our study points to the urgent need to develop multisectorial intervention support programmes to fully address these challenges. [ABSTRACT FROM AUTHOR]

Cultural narratives on disability have received much attention over the past few decades. In contexts of poverty, limited information and everyday challenges associated with having, or caring for someone with a disability, different understandings have emerged. A project was set up to promote disability awareness in neighborhood communities in a rural part of Kenya, using a process of reflection and education. This paper reports on the first aspect–reflection. The aim was to investigate local understanding of disability as a co-constructed concept. The research questions were: 1. What cultural beliefs shape local understanding of disability? 2. What challenges are perceived to be associated with disability? A phenomenological approach was adopted. Focus group discussions were conducted with twenty-one community groups involving 263 participants and audio-recorded. The data were transcribed and thematic analysis was carried out. Visual maps were created to illustrate any interconnections, before establishing the final conclusions. Local beliefs attributed disability to: human transgression of social conventions, particularly concerning inappropriate family relations, which invoked a curse; supernatural forces affecting the child; the will of God; unexplained events; and biomedical factors. Challenges associated with disability related to the burden of caregiving and perceived barriers to inclusion, with stress as a shared bi-product. Local understanding of disability in this rural part of Kenya demonstrated overlapping explanations and plurality of beliefs. Two possible interpretations are offered. Firstly, oscillation between explanatory lines demonstrated instability, affecting broader acceptance of disability. Secondly, and more positively, in the face of challenges, the desire to make sense of the existing situation, reflected a healthy pluralism. [ABSTRACT FROM AUTHOR]

Objective: To explore parents’ and professionals’ perceived causes and treatment of Autism Spectrum Disorders (ASD) on the Kenyan Coast. Methods: In-depth interviews and focus group discussions using guiding questions were utilized in data collection. One hundred and three participants, who included parents of children with ASD, special needs teachers, clinicians, and social workers from diverse cultural background, participated in this study. The interviews and focus groups were recorded, transcribed verbatim and then translated to English. Themes were generated using content analysis. Results: Preternatural causes were mentioned and included evil spirits, witchcraft, and curses. Biomedical causes comprised infections, drug abuse, birth complications, malnutrition, and genetic related problems. Treatment varied from traditional and spiritual healing to modern treatment in health facilities, and included consultations with traditional healers, offering prayers to God, and visits to hospitals. Conclusions: The results suggest that regardless of cultural backgrounds, people on the Kenyan Coast have similar views on perceived causes and treatment of ASD. These findings provide valuable conceptual understanding for professionals when planning and implementing community based rehabilitation interventions targeting children with ASD within a local context. [ABSTRACT FROM AUTHOR]

A high level of unmet communication need exists amongst children with developmental disabilities in sub-Saharan Africa. This study investigated preliminary evidence of the impact associated with a home-based, caregiver-implemented intervention employing AAC methods, with nine children in rural Kenya who have complex communication needs. The intervention used mainly locally-sourced low-tech materials, and was designed to make use of the child's strengths and the caregiver's natural expertise. A pretest-posttest design was used in the study. Data were gathered using an adapted version of the Communication Profile, which was based on the International Classification of Functioning, Disability, and Health (ICF) framework. The non-parametric Wilcoxon signed-rank test was applied to data from the first two sections of the Communication Profile-Adapted. Qualitative analysis was conducted on the final section. The data provided evidence of statistically significant positive changes in caregiver perceptions of communication at the levels of Body Structure and Function, and Activities for Communication. Also, analysis of the Participation for Communication section revealed some expansion to the children's social activities. The potential impact of the home-based intervention would benefit from investigation on a larger scale. Limitations of the study are discussed. [ABSTRACT FROM AUTHOR]

Purpose: Information regarding the nature, availability and distribution of rehabilitation services for children with disabilities across developing countries is scarce, and data that do exist are of variable quality. If planning and development are to progress, information about service provision is vital. The aim was to establish the scope and nature of rehabilitation support available to children with disabilities (0-15 years) and their families in rural Kenya. Method: A comprehensive sample comprising service provision in the health and special education sectors was established. Non-governmental and community-based organisations were also included. A survey of rehabilitation services was conducted through examination of service-related documentation and key informant interviews with the heads of services. Results: Rehabilitation comprised hospital-based occupational therapy, physiotherapy and orthopaedic technology; and seven special education establishments plus an education assessment resource centre. There was one non-government organisation and one community-based organisation relevant to children with disabilities. Activities focused on assessment, diagnosis and raising community awareness. Provision was challenged by inadequate staffing, resources and transport. Government funding was supplemented variously by donations and self-sufficiency initiatives. Rehabilitation approaches appeared to be informed by professional background of practitioner, rather than the needs of child. Service documentation revealed use of inconsistent recording methods. Conclusions: The data highlight the challenges of rehabilitation, demanding greater investment in personnel and their training, more material resources, improved access to the community and better recording mechanisms. [ABSTRACT FROM AUTHOR]

Background: Severe childhood illnesses present a major public health challenge for Africa, which is aggravated by a suboptimal response to the child's health problems with reference to the health-seeking behaviour of the parents or guardians. We examined the health-seeking behaviour of parents at the Kenyan coast because understanding impediments to optimal health-seeking behaviour could greatly contribute to reducing the impact of severe illness on children's growth and development. Methods and Results: Health-seeking behaviour, and the factors influencing this behaviour, were examined in two traditional communities. We held in-depth interviews with 53 mothers, fathers and caregivers from two rural clinics at the Kenyan Coast. Biomedical medicine (from health facilities and purchased over the counter) was found to be the most popular first point of treatment. However, traditional healing still plays a salient role in the health care within these two communities. Traditional healers were consulted for various reasons: a) attribution of causation of ill-health to supernatural sources, b) chronic illness (inability of modern medicine to cure the problem) and c) as prevention against possible ill-health. In developing an explanatory model of decision-making, we observed that this was a complex process involving consultation at various levels, with elders, but also between both parents, depending on the perceived nature and chronicity of the illness. However, it was reported that fathers were the ultimate decision makers in relation to decisions concerning where the child would be taken for treatment. Conclusions: Health systems need to see traditional healing as a complementary system in order to ensure adequate access to health care. Importantly, fathers also need to be addressed in intervention and education programs. [ABSTRACT FROM AUTHOR]

This study sought to adapt a battery of Western speech and language assessment tools to a rural Kenyan setting. The tool was developed for children whose first language was KiGiryama, a Bantu language. A total of 539 Kenyan children (males=271, females=268, ethnicity=100%Kigiryama) were recruited. Data were initially collected from 52 children (pilot assessments), and then from a larger group of 487 children (152 cerebral malaria, 156 severe malaria and seizures, 179 unexposed). The language assessments were based upon the Content, Form and Use (C/F/U) model. The assessment was based upon the adapted versions of the Peabody Picture Vocabulary Test, Test for the Reception of Grammar, Renfrew Action Picture Test, Pragmatics Profile of Everyday Communication Skills in Children, Test of Word Finding and language specific tests of lexical semantics, higher level language. Preliminary measures of construct validity suggested that the theoretical assumptions behind the construction of the assessments were appropriate and re-test and inter-rater reliability scores were acceptable. These findings illustrate the potential to adapt Western speech and language assessments in other languages and settings, particularly those in which there is a paucity of standardised tools. [ABSTRACT FROM AUTHOR]

Childhood epilepsy is common in Africa. However, there are little data on the developmental and behavioral problems experienced by children living with epilepsy, especially qualitative data that capture community perceptions of the challenges faced by these children. Identifying these perceptions using qualitative approaches is important not only to help design appropriate interventions but also to help adapt behavioral tools that are culturally appropriate. We documented the description of these problems as perceived by parents and teachers of children with or without epilepsy. The study involved 70 participants. Data were collected using in-depth interviews and focus group discussions and were analyzed using NVIVO to identify major themes. Our analysis identified four major areas that are perceived to be adversely affected among children with epilepsy. These included internalizing and externalizing problems such as aggression, temper tantrums, and excessive crying. Additionally, developmental delay, especially cognitive deficits and academic underachievement, was also identified as a major problematic area. There is a need to supplement these findings with quantitative estimates and to develop psychosocial and educational interventions to rehabilitate children with epilepsy who have these difficulties. [ABSTRACT FROM AUTHOR]