The development of a primary level communication intervention protocol for children with severe disabilities

Abstract

Service delivery to children with severe disabilities (CSDs) in developing countries share some common characteristics. These include inaccessible services due to the fact that the majority of services are located in a few large cities, the focus of services are usually on school-age children (with few for pre-schoolers), many services require specialised staff and high technology equipment that is not always available and professionals who tend to work in isolation with minimal integration between services. A particularly vulnerable group within the sphere of CSDs are beginning communicators because of their inability to articulate their needs, feelings and rights. Programmes to specifically address these communication needs by equipping them with the necessary skills to interact and participate in society, are very limited. Often the first contact that primary caregivers of a CSD have with professionals, is with the community health nurse. Furthermore, they often remain the only professionals who provide continuous support and assistance to these caregivers. It is therefore clear that these nurses need to be equipped with the necessary knowledge and skills in order to assist caregivers in dealing with their children with severe disabilities. This can be done by training these nurses (through multiskilling) to function as transdisciplinary professionals. Furthermore, a need for appropriate materials for service delivery to this population also exists. Consequently the BCIP (Beginning Communication Intervention Protocol) was developed. The BCIP addresses four important communication domains, namely communication means (including objects, photographs, manual signs, PCS symbols and a simplified 4-option digital speaker), functions (namely informational functions e.g. requesting more, requesting help, etc. and social functions, e.g. greeting, drawing attention to self, etc.), partners (both adults and peers) and the deliberate creation of communication opportunities (e.g. by providing small portions, placing desired items out of research) etc. Care was taken to ensure culture sensitivity and the authenticity of the BCIP. Twenty community health nurses were trained in the application of the BCIP. Training employed adult learning principles and was one week long, followed by three follow-ups that were conducted in situ (at two weeks, six weeks and five months post-training). Multiple measurements were used to evaluate the knowledge and skills acquired after training, namely questionnaires, structured interviews, skill demonstrations (which were video recorded and rated by the researcher and an independent rater) and a focus group. Results indicated that the BCIP training is relevant in bringing about a significant change in the targeted domains, namely knowledge and skills. Peripheral behaviours (namely attitudes, job satisfaction and type of service delivery provided) were all rated high at the onset of the research and thus quantitative data failed to show improvement. On the other hand, qualitative data from the focus group suggested improvement.