Developing an information program for parents whose children are cochlear implant candidates

Cochlear Implant (CI) on children have begun in 1990s and recently the number of these applications continues to increase. As the National Newborn Hearing Screening Program became active throughout the country CI became accessible to wider populations and age has shown a decrease. Since children have to be operated on at a very young age this decision is made by their parents on their behalf. For parents the CI process beginning by decision consists of a series of stages: candidate evaluation, speech processor turn-on, mapping, technical maintenance of the device and auditory-verbal training. This whole process can be very complex and hard to cope for the parents. Researchers repeatedly emphasize that in order to ensure the parents can overcome the challenges they will meet throughout the process they should be informed about the process in detail. However, any standard, integrated information program based on analysis of needs and which can be simultaneously presented to a group of parents as necessary could not be found in the available the accessible national and international literature. In this scope, the main purpose of this study is to develop an information program for parents whose children are CI candidates. In order to achieve this purpose a two-staged research process is planned, which include: (1) analysis stage aimed at determining information needs of parents in CI process and (2) program development, implementation and evaluation stage. Mixed methods design was conducted as the research design with 149 participants. In the first stage consisting of analysis of needs, focus group interview, a qualitative data gathering technique, was exercised with CI team members (n = 6) and parents whose children are CI users (n = 7), while semi-structured interviews were conducted with various CI company representatives (n = 4). The data obtained from these interviews were subjected to descriptive analysis by inductive reasoning. In result of the analysis three main themes have emerged in regard of information needs: (1) Program necessity, (2) Program structure and (3) Program content. 12 sub-themes of the 3rd theme indicating which subjects should be included in the program include the following: effects of hearing loss, CI process, operation stage, auditory-verbal training stage, hearing and language development, general development of the child, CI device, protection needs, legal rights, parent psychology, experiences of other parents, and future treatment/technology possibilities. At this stage the Cochlear Implant Information Needs Survey (KİBA) was also practiced with 100 parents whose children are CI users. Results of this survey were subjected to quantitative descriptive analysis and integrated with the qualitative findings. The second stage of the study consists of development, implementation and evaluation of program. Taba-Tyler Model was taken as reference for program development. In scope of this model program development and program goals, content, educational strategy, methods and techniques were determined in collaboration with experts in the field. The program consisting of four main modules (CI process, development with CI, CI device, parent experiences) was applied to 32 parents whose children are CI candidates. The effectiveness of the implemented program was evaluated with the pretest – posttest – follow up test experimental design without control group. In this scope, results of Related Samples ANOVA and results of Paired Samples t-Test were found to be significant for multiple comparisons of pretest – posttest – follow up test scores. Therefore the developed program was evaluated as effective to the extent of limits of the utilised experimental pattern and sample. Finally, an Information Program Satisfaction Survey (BİPMA) was practiced with the parents in order to determine the social validity level of the program, and the answers given to the survey have shown the program has a very high level of social validity. Findings of the study have shown that the parents whose children are CI candidates needs a wide variety of information in all stages of CI process, that the information program developed on basis of analysis to meet these needs was effective for this purpose, and the parents were satisfied with the program. Our hope is this program will serve as a first step towards new studies in this direction and it is our belief this program has the potential to overcome an important deficiency in practice.