Presenting life with cystic fibrosis: a Q-methodological approach to developing balanced, experience-based prenatal screening information.

BACKGROUND

Cystic fibrosis (CF) is one of the most common life-threatening genetically inherited conditions and prenatal screening for CF is available in many countries. Genetic counsellors and other health professionals are expected to provide information about the condition in a way that facilitates personal decision making. Knowing what information to deliver about complex genetic conditions to support informed screening decisions can be challenging for health professionals.

OBJECTIVE

To solicit views from those with personal experience with CF on which aspects of the condition they consider most important to include in prenatal screening materials.

METHODS

Q-methodology; an approach to systematically explore variations in viewpoint that combines factor analytic techniques with qualitative approaches to pattern interpretation.

SETTING AND PARTICIPANTS

Twelve adults with CF and 18 parents of affected children were recruited from a regional centre in the UK.

RESULTS

Five distinct viewpoints on the items most and least important to include in screening information were identified: Factor 1 the normality of life with CF and increasing life expectancy; Factor 2 the hardships and reduced lifespan. Factor 3 medical interventions and the importance of societal support. Factor 4 longer-term consequences of CF. Factor 5 the ability to adjust to the condition.

DISCUSSION

The identification of five different views on what represented the most and least important information to include about CF highlights the challenge of portraying a complex genetic condition in a balanced and accurate manner. Novel ways in which Q-methodology findings can be used to meet this challenge are presented.