A scoping review of primary caregivers'perceptions of their involvement in augmentative and alternative communication of their children

Abstract

BACKGROUND: Augmentative and alternative communication (AAC) intervention is pivotal for obtaining functional outcomes in communication and participation of children with complex communication needs (CCN). Various studies focused on the experiences and perceptions of parents as primary caregivers with regards to their involvement in AAC intervention and implementation of their child with CCN. The value of the findings of these studies lies therein that from the findings it could be derived how parents view their involvement and how their nature of involvement could possibly influence the successful and beneficial implementation of AAC intervention. Since the primary caregiver is the only constant factor in the life of a child with CCN, it has proven to be feasible to investigate the primary caregivers’ perception of their involvement in AAC intervention. METHODS: A scoping review was used during which articles were screened from various databases using predetermined Boolean search terms. In a pilot study, the search terms were refined to obtain optimal selection of articles after selecting articles on abstract level, selection was done based on full text which eventually led to 10 articles being identified on a full text level using a qualitative method based on tables generated from the data. Data were extracted from these 10 articles using a self-developed data extraction tool and then organised into various tables which led to compiling the final findings and conclusion for the review. RESULTS: The results indicated the benefit of AAC intervention when involving the parents in AAC intervention of their child with CCN. It mainly indicated the needs of parents not involved in their child’s AAC intervention, not only the influence on them as parents but on the family system and the various ecological systems of the family and the child. The knowledge and skills required by the parents are prominent needs and the lack thereof as well as not being consulted on their opinion often leaves them feeling disempowered and unvalued. CONCLUSIONS: A family-centred approach to AAC intervention is of the utmost importance in AAC intervention of a child with CCN. If the parent as primary caregiver and the members of the family system are not included in decision making, goal setting, and planning, AAC intervention will most likely not be successful and lead to the abandonment of the selected AAC system. This abandonment will impact on the family system as well as the ecological systems of the child which in turn, will impact negatively on the child’s development and communication. Keywords: Augmentative and alternative communication; communication intervention; family and ecological systems; involvement; perceptions; primary caregivers