A comparison of two approaches to education about carrier testing for cystic fibrosis

Abstract

We tested the efficacy of two types of educational materials for genetic counseling: a traditional information brochure and one adding a role model story. Brochures were alternated weekly at a prenatal genetics center. Subjects were asked to read the brochure and fill out a questionnaire covering demographics and variables from the health belief model (impact, barriers, motivation, susceptibility, knowledge, severity). A group of 409 pregnant women and 251 male partners participated. Study design was quasiexperimental, using a post-test only comparison group. The brochure with modeling enhanced the perception of both risk and the severity of the disease and was inversely associated with the assessment of barriers, but did not directly impact on the decision to pursue testing; only 12% chose to be tested, with no significant differences between groups. While suggestive, the study is not confirmatory and should be repeated with a more heterogenous group of women.

Psychosocial aspects of genetic screening of pregnant women and newborns: a systematic review

“…Ten papers [89][90][91][92][93][94][95][96][97][98] refer to knowledge before or around the time of testing.…”

“…97 This study compared knowledge in two groups of women (total N = 409) receiving either a traditional information brochure or an expanded one including a story. The women were attending a prenatal genetics centre, usually because they were ≥ 33 years old.…”

“…89,90,92,94,[96][97][98][99][100][101][102][103][104]107,[123][124][125][126] Seven studies employed an RCT design; five evaluated interventions offering screening information in two or more ways 48,62,63,97,124 and two that provided screening in different ways (couple versus stepwise carrier screening). 94,101 Nine studies referred to the psychological literature when developing a measure or coding frame to assess women's decision-making strategies.…”

“…94,101 Nine studies referred to the psychological literature when developing a measure or coding frame to assess women's decision-making strategies. Of these, five were based on expectancy-value models adapted for understanding health behaviours, 17,97,103,107,124 three on information processing theory 45,48,62 and one on feminist psychological theory. 117 As there is little similarity in the measures employed across studies, statistical integration of findings is not possible.…”

“…Fifteen papers assessed cognitions associated with just one of the possible screening options, such as those that accepted screening only or only those that decided to have a diagnostic test. Most studies employed questionnaire or interview survey methods to explore women's choices, seven administered before the testing decision was made, 89,94,96,97,123,124,126 nine after testing but before receipt of results 17,45,48,90,92,107,113,115,125 and the rest after receipt of results. These variations in research design mean it is likely that many findings about cognitions during decision making were prone to some bias, either representing the cognitions associated with just one aspect of the screening process or reporting cognitions that are in some way 'readjusted' postdecision-making.…”