Perspectives of key stakeholders on educational experiences of children with autism spectrum disorders at the Kenyan Coast.

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.

Empowering self-help groups for caregivers of children with disabilities in Kilifi, Kenya: Impacts and their underlying mechanisms.

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.

Development of self-help groups for caregivers of children with disabilities in Kilifi, Kenya: process evaluation

Background: Caring for a child with disabilities in a resource-poor setting brings many challenges to the caregiver. We examined the development of self-help groups for caregivers in a rural part of Kenya. Objectives: To conduct a process evaluation on the development of self-help groups during a 10-month set-up period, focusing on implementation and mechanisms associated with their functional status. Methods: Using a realist evaluation design, we set up 20 self-help groups for 254 caregivers. An evaluation was conducted to investigate implementation and mechanisms of impact. Implementation focused on caregiver registration, community group support and monitoring visit compliance. Data were collected from group registers, records of meetings and field notes. Mechanisms of impact employed a framework of strengths­weaknesses­opportunities­threats to review the groups at the end of the 10-month set-up period. Results: Recruitment resulted in registration of 254 participants to 18 groups ­ two groups disbanded early. Post-evaluation included 11 active and 7 inactive groups. Compliance with the monitoring visits was consistent across the active groups. All groups engaged in 'merry-go-round' activities. The active groups were characterised by strong leadership and at least one successful income generation project; the inactive had inconsistent leadership and had dishonest behaviour both within the group and/or externally in the community. Mediators associated with functional status included the following: available literacy and numeracy skills, regular meetings with consistent attendance by the members, viable income generating projects, geographical proximity of membership and strong leadership for managing threats. Conclusion: Self-help groups have the potential to progress in resource-poor settings. However, critical to group progression are literacy and numeracy skills amongst the members, their geographical proximity, regular meetings of the group, viable income generating projects and strong leadership

Development of self-help groups for caregivers of children with disabilities in Kilifi, Kenya: Process evaluation.

Background: Caring for a child with disabilities in a resource-poor setting brings many challenges to the caregiver. We examined the development of self-help groups for caregivers in a rural part of Kenya. Objectives: To conduct a process evaluation on the development of self-help groups during a 10-month set-up period, focusing on implementation and mechanisms associated with their functional status. Methods: Using a realist evaluation design, we set up 20 self-help groups for 254 caregivers. An evaluation was conducted to investigate implementation and mechanisms of impact. Implementation focused on caregiver registration, community group support and monitoring visit compliance. Data were collected from group registers, records of meetings and field notes. Mechanisms of impact employed a framework of strengths-weaknesses-opportunities-threats to review the groups at the end of the 10-month set-up period. Results: Recruitment resulted in registration of 254 participants to 18 groups - two groups disbanded early. Post-evaluation included 11 active and 7 inactive groups. Compliance with the monitoring visits was consistent across the active groups. All groups engaged in 'merry-go-round' activities. The active groups were characterised by strong leadership and at least one successful income generation project; the inactive had inconsistent leadership and had dishonest behaviour both within the group and/or externally in the community. Mediators associated with functional status included the following: available literacy and numeracy skills, regular meetings with consistent attendance by the members, viable income generating projects, geographical proximity of membership and strong leadership for managing threats. Conclusion: Self-help groups have the potential to progress in resource-poor settings. However, critical to group progression are literacy and numeracy skills amongst the members, their geographical proximity, regular meetings of the group, viable income generating projects and strong leadership.

Persons with disabilities as experts-by experience: using personal narratives to affect community attitudes in Kilifi, Kenya.

BACKGROUND: The last decade has seen improved public awareness of disability in sub-Saharan Africa. However, negative and stereotypical views of disability still persist in many communities. We conducted a study to promote awareness of disability in rural Kenya, using a process of reflection and education. This paper reports on the second aspect - education. The research question was: How can personal narratives of living with disability affect community attitudes and responses to disability? METHODS: A qualitative phenomenological approach was adopted. Twenty community-based groups involving 249 participants took part. Each group participated in one focus group discussion at baseline, to explore the members' personal experiences and views of disability. The intervention involved three adults with disabilities sharing their personal narratives with each group. After the intervention, repeat focus group discussions were conducted with each group. Thematic analysis was carried out according to the framework method. RESULTS: The emergent framework consisted of four main themes, organised as opposing constructs: 'burden' and 'agency', 'sub-human' and 'human'. 'Burden' focused on the perceived hopelessness of the situation. Post-intervention revealed greater support for the 'agency' of persons with disabilities, evidenced by what the person could do, rather than their inability, and the relevance of support. The 'sub-human' to 'human' construct captured dehumanising and discriminating practice towards persons with disabilities on one side, and recognition of the person and inclusion in the community on the other. Whilst support and empathy were evident at the pre-intervention stage, post-intervention revealed greater recognition of people with disabilities as fellow human beings. CONCLUSION: This study provides a proof of concept regarding the deployment of persons with disabilities as agents for change. Exposure to experts-by-experience provided community groups with opportunities to reflect on, examine and adjust their views on disability in this rural part of Kenya. The sharing of personal narratives appeared to resonate with group members, to encourage recognition of the person and not just the disability, and to move their resolve toward ideas for collective action. Further research is needed to assess the effects of such interventions.

The perception of disability by community groups: Stories of local understanding, beliefs and challenges in a rural part of Kenya.

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.

Challenges and coping strategies of parents of children with autism on the Kenyan coast.

INTRODUCTION: Research on the challenges of raising a child with autism is mostly conducted in Europe, North America and Australia, and has revealed that parents have to come to terms with living with a lifelong developmental disability. In addition, parents are faced with numerous concerns, such as caring burdens, poor prognosis, and negative public attitudes. Virtually no research has been conducted in Africa on this subject. METHODS: Thirty-seven interviews and eight focus group discussions were conducted with parents of children with autism and professionals in regular contact with these parents from rural and urban counties of the Kenyan coast. The study investigated challenges faced by parents and how they cope with those challenges. A purposive-convenience sampling procedure was used in selecting the study participants. A digital recorder was used to record all the interviews and focus group discussions. Transcriptions were done in Swahili, translated into English, and then imported to the NVivo software program for content analysis. RESULTS: The results indicate that parents of children with autism on the Kenyan coast experience common challenges including stigma, lack of appropriate treatment, financial and caring burdens regardless of their religious and cultural backgrounds. Coping strategies applied by parents comprised problem-focused aspects that involve diet management and respite care, and emotion-focused aspects that consist of beliefs in supernatural powers, prayers and spiritual healing. CONCLUSIONS: This qualitative study reveals a range of challenges that could have significant impact when caring for a child with autism. Coping strategies applied by parents target the physical health of the child and the psychological wellbeing of the parent. Consideration of these outcomes is vital as they could impact the initiation of a community-based rehabilitation service delivery in rural settings where parents play an active role.

Parents' and professionals' perceptions on causes and treatment options for Autism Spectrum Disorders (ASD) in a multicultural context on the Kenyan Coast.

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.

Caregiver perceptions of children who have complex communication needs following a home-based intervention using augmentative and alternative communication in rural Kenya: an intervention note.

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.

Survey of rehabilitation support for children 0-15 years in a rural part of Kenya.

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. IMPLICATIONS FOR REHABILITATION: There needs to be greater investment in rehabilitation provision in developing countries. Consideration of community-based initiatives is required to support better access for all. In order to argue the case for improved resources, better skills and mechanisms for recording, monitoring and evaluating practice are needed.

Socio-cultural determinants of health-seeking behaviour on the Kenyan coast: a qualitative study.

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.

Investigation of practices to support the complex communication needs of children with hearing impairment and cerebral palsy in a rural district of Kenya: a case series.

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.

Users' experiences of physiotherapy treatment in a semi-urban public hospital in Kenya.

INTRODUCTION: Physiotherapy practice in Africa faces a number of challenges, one of which is the limited number of therapists in most public hospitals. In Africa, physiotherapy is still mainly institution based with very little community-based practice, leading to lack of access to services for a large part of the population. This study explores users' perceptions of physiotherapy, challenges faced by users, possible options for management, and determines whether current physiotherapy practice in a rural Kilifi District general hospital in Kenya facilitates future self-management of chronic conditions. METHODS: Eight in-depth interviews, 3 focus groups discussions and 4 participant observations were conducted for data collection. All interviews and focus group discussions were recorded using a digital recorder, transcribed into the Swahili language and then translated into English. The transcriptions were imported to NVivo 9 (www.qsrinternational.com) for management and storage. Inductive data analysis was used to generate themes from the rich-text data of the transcriptions. RESULTS: Many of the users perceived physiotherapy as being effective. Challenges included distance from health facilities, negative experiences with some therapists, and lack of staff and equipment. Rehabilitation options included community- and home-based programs fostering self-management of chronic conditions. Current hospital practice lacks emphasis on self-management skills for patients with chronic conditions who can do their physiotherapy at home. CONCLUSIONS: Users' experiences of physiotherapy treatment in this rural hospital indicate that a host of challenges exist. In the face of these challenges, the needs of the users seemed to be compromised, especially those with chronic conditions. Rehabilitation services that are accessible and affordable would be better options in rural and low-resource settings. There is therefore need for community-based services that place emphasis on self-management of chronic conditions for fostering better health outcomes in rural communities.

Identification of people with disabilities using participatory rural appraisal and key informants: a pragmatic approach with action potential promoting validity and low cost.

BACKGROUND: Surveys have been the conventional methods used for identification of people with disabilities; however, they have been observed to be expensive and time-consuming that may not be affordable or practical. As a result, the participatory rural appraisal (PRA) and key informant (KI) approaches have been developed and increasingly used in the resource-poor countries. OBJECTIVE: To investigate the strengths and weaknesses of PRA and KI approaches in the identification of people with disability in resource-poor countries. METHOD: A review of published related papers was performed by searching electronic databases including PubMed, Scirus, Health on the Net (HON), Ovid Medline and SOURCE disability database. RESULTS: A total of 11 relevant papers were identified from the literature that used PRA or KI methods or both. The PRA and KI approaches were not only consistently less expensive than conventional surveys, but also observed to be simple and fast for identifying disabilities according to local perceptions, although they were less sensitive. The evidence showed that PRA and KI processes had the benefit of engaging and developing long-term partnerships with the local communities and so the likelihood of positive long-term impact on the community. CONCLUSIONS: The PRA and KI approaches could be fast and cost-effective methods for identifying people with disabilities as an alternative to surveys. They are especially useful when identification is related to subsequent development of community-based services for persons with disabilities. However, surveys were shown to be more sensitive and therefore more accurate for establishing prevalence rates of impairment.

Using participatory rural appraisal (PRA) in the identification of children with disabilities in rural Kilifi, Kenya.

INTRODUCTION: Cross-sectional surveys have been used widely for identifying children with disabilities, but they have several disadvantages. The surveys concentrate on identifying impairments and do not encourage the participation and ownership of the community. Participatory rural appraisal (PRA) provides a cost-effective and efficient method that reflects the local perceptions of disability and involves local people. These factors are important for sustainability in resource-poor countries. PURPOSE: To evaluate the application of PRA to identifying children with disabilities in a rural setting. METHODS: PRA was used to identify children with disabilities in two rural sub-locations in Kilifi, Kenya. Data were collected through 12 focus group discussions and 12 social mapping activities. A purposive convenience sample of teachers, village leaders and women groups participated in the PRA. The perceptions of disability were established before identification of the children. The categories of identification were based on these local perceptions. The qualitative data were analyzed thematically and validation was performed through triangulation. RESULTS: Disability was perceived locally as the existence of impairments, activity limitations and participation restrictions. Disabilities were associated with traditional beliefs including witchcraft, evil spirits and punishments from God. In some cases these categories were mutually exclusive and in others they were concurrent. Children who had lost their parents and were not being cared for by relatives (disadvantaged orphans) were also perceived as disabled children by teachers and local women, but not by community leaders. CONCLUSION: The results suggest that PRA is an efficient and cost-effective method of identifying children with disabilities according to local perceptions, and it may be useful in community-based rehabilitation as an alternative to surveys.

Severe falciparum malaria and acquired childhood language disorder.

Language disorders have been reported after severe falciparum malaria but the deficits have not been described in detail. We assessed language outcome in three groups of children aged 6 to 9 years (n=487): those previously admitted to Kilifi District Hospital, Kenya, with cerebral malaria (CM; n=152; mean age 7y 4 mo [SD 1y 1mo]; 77 males, 75 females); or those with malaria and complicated seizures (M/S; n=156; mean age 7y 4mo [SD 1y 2mo]; 72 males, 84 females); and those unexposed to either condition (n=179; mean age 7y 6mo [SD 1y 1mo]; 93 males, 86 females). Median age at hospital admission was 28 months (interquartile range [IQR] 19 to 44 mo) among children with a history of CM and 23 months (IQR 12 to 35mo) among children with a history of M/S. A battery of eight assessments covering the major facets of speech and language was used to measure language performance. Cognitive performance, neurological/motor skills, behaviour, hearing, and vision were also measured. Eighteen (11.8%) of the CM group, 14 (9%) of the M/S group, and four (2.2%) of the unexposed group were found to have a language impairment. CM (odds ratio 3.68, 95% confidence interval 1.09 to 12.4, p=0.04) was associated with significantly increased odds of an impairment-level score relative to the unexposed group. The results suggest that falciparum malaria is one of the most common causes of acquired language disorders in the tropics.