A home-based intervention using augmentative and alternative communication (AAC) techniques in rural Kenya: what are the caregivers' experiences?

BACKGROUND: Caring for a child with complex communication needs associated with a developmental condition frequently adds stress to the caregiver. Furthermore, professional assistance is scarce in low-income rural settings. For such children speech is frequently unachievable. Augmentative and alternative communication provides options for supplementing or replacing speech with other techniques. The current study aimed to examine the experiences of caregivers in Kenya before and after a home-based intervention using augmentative and alternative communication techniques with children with complex communication needs. METHODS: Caregivers were interviewed pre- and post-intervention. The interviews were digitally recorded, transcribed and translated into English. Content analysis was applied through the stages of text familiarization and topic organization. Emergent themes and their sub-themes were identified and labelled. Connections between themes were established and interpretations made. The procedure was completed by a second researcher independently. Conflicting ideas were jointly discussed until consensus was achieved. RESULTS: Four themes emerged from the data: communication process; struggle; normality; and supernatural power. Before intervention, the caregivers acknowledged their expertise in communications with the child, while also revealing their sense of isolation, burden and pain. Normality was present as a source of comparison and also an aspirational goal. Post-intervention more positive language was used to describe the child. There was an 'opening up' of communication that recognized the child's strengths and some social support systems were re-established. The power of the supernatural was recognized before and after intervention. CONCLUSION: Caring of a child with complex communication needs presents many challenges. A home-based intervention using augmentative and alternative communication techniques appears to have been a catalyst for some positive transformations in the caregivers' experiences, although it is not possible to attribute this change to any one aspect. The potentials of the home-based intervention would benefit from further investigation on a larger scale.

Perceptions, social life, treatment and education gap of Tanzanian children with epilepsy: a community-based study.

The effects of epilepsy on children and their families, factors influencing the treatment and education gap and socio-cultural beliefs about epilepsy in children in rural sub-Saharan Africa are not clearly defined. We conducted a qualitative study, with 38 in-depth interviews and 2 focus group discussions with carers of children with epilepsy (CWE) in Tanzania. Discrimination, isolation and lack of hope were identified as major issues. Poor school attendance was attributed to learning difficulties, behavior problems, ongoing seizures and restricted school access. The treatment gap was related to misdiagnosis, preferential use of traditional treatment and cost of biomedical treatment. The hopes expressed for the future centered on access to treatment and education. Improved access to diagnosis, cost-effective treatment, sensitization of the community on epilepsy, collaborative care provision with traditional and faith healers and improved access to specialist schooling could improve the quality of life and future of CWE in this region.

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.