Phase Two-Research on Effectiveness of BASICS: Baby Awareness & Support Through Interactive Computer Systems

The purpose of this 2-year research on effectiveness project is to examine the success of a Steppingstones project BASICS:Baby Awareness and Support Through Interactive Computer Systems. The phase 1 BASICSgrant was to develop an interactive computer system (ICS)that was user friendly, multi-level, and provided a touch screen kiosk. The system is used to support families of infants who have a high probability of having a handicapping condition as evidenced by the presents of an established risk (risk of handicapping condition greater than 80% that identified in Kentucky State Regulation, I.e. Down Syndrome. The ICSpathways developed through this grant are de~crlbed more fully on our website at http://webdev.mccs.uky.edu/BASICS/ and a description is following for your conv~yance. Effectiveness will be evaluated using Parent/Consumer focus groups and expert reviews to ensure that project topics are complete and user friendly. Use of focus groups will allow for formative evaluation using both qualitative and quantitative data gathering techniques. Also, a matched-randomized, experimental design to examine the effectiveness..of the package. Plans are to use a treatment group (TG, n=60) and a control group (CG, n=60). Families will be asked to participate if they have an infant residing In the NICUand having an established risk. Infants who have not yet reached 7 days chronological age and survival is likelywillbe eligible for participation in the study. Iffamilies agree to participate, they willbe asked to provide written consent for participation In an IRBapproved study. The TG will receive a 1-hour orientation to the ,interactive system and support in using the system as needed. TGwillalso receive an ICShandbook for self-activated learners. Families in the TGgroup wilibe given access to the system for 4 weeks. The CG willreceive the standard care provided to all families in the NICU. Participation In the study will not affect the care provided to the CG beyond not having early access to the ICS. Further, following completion of the 4 weeks study and completion of dependent evaluation forms, they too, will have access to the ICS.Families willbe informed of the monitoring b!JiltInto the ICS,the system willrecord the number of times each member uses the system, how long they use the system, and the frequency and duration with which branches are accessed. Thisquantitative data will be obtained through the built-In database features of the system. Additionally, CG and TG will participate in collection of dependent measures. Dependent measures includes: a) Number of hospital visits,b) Parent Stress Scale: Neonatal Intensive Care Unit(Miles, 1987, 1991), c) A bedside observation tool, d) The Family Needs Survey (Bailey& Simeonsson, 1988), e) Family Resource and: f) Parent satisfaction scale (Sampers &Nowak, 1999). Additionally, an evaluation of the system will be completed to examine the person-computer interface with open-ended observations and InteNiews. Also, sessions willbe video recorded for later event recording analysis. Functionality of the system willbe explored by persons with disabilities and they willbe asked to complete sUNey information including Bug Reports, Content Evaluation Forms, Design Evaluation, and Sibling Reactions Forms.