Presenting life with cystic fibrosis: a Q-methodological approach to developing balanced, experience-based prenatal screening information.
Health Expect
; 18(5): 1349-62, 2015 Oct.
Article
em En
| MEDLINE
| ID: mdl-23910894
ABSTRACT
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 ANDPARTICIPANTS:
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.Palavras-chave
Texto completo:
1
Base de dados:
MEDLINE
Assunto principal:
Diagnóstico Pré-Natal
/
Educação em Saúde
/
Fibrose Cística
Tipo de estudo:
Diagnostic_studies
/
Prognostic_studies
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Qualitative_research
/
Screening_studies
Limite:
Female
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Humans
/
Pregnancy
País como assunto:
Europa
Idioma:
En
Ano de publicação:
2015
Tipo de documento:
Article