Open AccessPresenting life with cystic fibrosis: a Q‐methodological approach to developing balanced, experience‐based prenatal screening information
Author(s) -
Wright Katherine F.,
Bryant Louise D.,
Morley Stephen,
Hewison Jenny,
Duff Alistair J.A.,
Peckham Daniel
Publication year - 2015
Publication title -
health expectations
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.314
H-Index - 74
eISSN - 1369-7625
pISSN - 1369-6513
DOI - 10.1111/hex.12113
Subject(s) - genetic counseling , normality , viewpoints , life expectancy , genetic condition , psychological intervention , interpretation (philosophy) , psychology , medicine , qualitative research , cystic fibrosis , applied psychology , social psychology , computer science , nursing , pediatrics , genetics , art , population , social science , environmental health , sociology , visual arts , biology , programming language
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.