Constructing a relevant decision aid for parents of children with bronchopulmonary dysplasia.

BACKGROUND: To develop and test a decision aid for counseling parents of children with bronchopulmonary dysplasia (BPD).Local problem:Parental education about complex conditions is not standardized and communication and understanding may not be adequate. METHODS: Semi-structured interviews were conducted with 33 neonatal clinicians and 12 parents of children with BPD using a qualitative research design. The interviews were used to identify education topics that were felt to be important in BPD education. These topics were then used to create a visual decision aid to be used in counseling sessions with parents. The decision aid was then used in mock counseling sessions with 15 'experienced' participants and 7 'naïve' participants to assess its efficacy. The participants completed a pre and post test to assess change in knowledge as well as an 11-question Likert style acceptability survey. INTERVENTION: Implementation of a decision aid while educating parents about BPD. RESULTS: Topics identified during the interviews were used to create eight educational cards which included pictures, pictographs and statistics. Overall, participants thought the decision aid contained an appropriate amount of information, were easy to understand and improved their knowledge about BPD. Testing demonstrated a significant increase in knowledge in both the 'experienced' (P<0.0001) and 'naïve' group (P=0.0064). CONCLUSION: A decision aid for parents of children with BPD may improve understanding of the condition and help facilitate communication between parents and doctors.

Development of a video decision aid to inform parents on potential outcomes of extreme prematurity.

OBJECTIVE: The objective of the study is to develop and validate a video-based parental decision aid about the outcomes of extremely premature infants. STUDY DESIGN: Thirty-one clinicians and 30 parents of extremely premature infants (<26 weeks gestation) previously underwent semi-structured interviews to assess perceptions of antenatal counseling. Interviewees recommended a video. A video was iteratively developed, with final validation by three groups: clinicians (n=16), parents with a history of extreme prematurity (n=14) and healthy 'naïve' women without prior knowledge of prematurity (n=13). Two iterations of the video were created. Following a simulated counseling session, an eight-question survey and the State-Trait Anxiety Inventory (STAI) were administered to parents and 'naïve' participants to assess usefulness and stress provocation. RESULTS: The final 10-min video shows six children/parent dyads of former 23 to 25 week premature children with a wide range of outcomes. This video was well accepted by clinicians as well as parent and 'naïve' participants, who perceived it as 'balanced' with a 'neutral' message. The video was felt to provide useful information and insight on prematurity. The final version of the video did not induce anxiety: parents STAI-S 36.1±12.1; 'naïve' 30.2±8.9. CONCLUSIONS: A short video showing the range of outcomes of extreme prematurity has been produced. It is well accepted and does not increase levels of anxiety as measured by the STAI. This video may be a useful and non-stress-inducing aid at the time of counseling parents facing extreme prematurity.