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Considering consent : an analysis of factors influencing parental perceptions of decisional quality in the context of newborn screening

By Stuart G. Nicholls

Abstract

This thesis explores decision-making and perceptions of decisional quality in parents whose children have undergone newborn bloodspot screening. Newborn bloodspot screening is the programme through which newborn babies are screened for a variety of conditions shortly after birth. In the UK babies are screened for phenylketonuria (PKU), congenital hypothyroidism (CH), sickle cell diseases (SCD), cystic fibrosis (CF) and medium chain acyl-CoA dehydrogenase deficiency (MCADD), with Duchenne muscular dystrophy (DMD) offered as additional screen in Wales. Much has been written about the applicability of consent to newborn bloodspot screening, yet research has tended to revolve around parental knowledge and information provision. These studies say little in terms of actual or perceived decisional quality or whether parents are making an informed choice. Taking an exploratory sequential mixed methods approach, the present study aims to identify and model factors that in fluence parental perceptions of decisional quality within the context of newborn bloodspot screening. The thesis draws on two studies; an exploratory study of parental experiences of newborn bloodspot screening using semi-structured interviews, and a subsequent quantitative phase which analysed data collected through a postal questionnaire. The results of these studies provide significant insights into parental decision-making. Attitudes toward medicine were shown to have a significant causal infl uence on perceived decisional quality through its indirect effect on parental attitudes towards screening. Through the disaggregation of these general and specific attitudes, the significant role of perceived choice is identified. Perceived choice is demonstrated not only to be a significant contributing factor to the perceived quality of decision made, but is also shown to have a strong infl uence on attitudes towards screening through an indirect and positive relationship with perceived knowledge of screening. Both of these elements suggest that the context of screening and its presentation are key determinants of parental decisional quality

Publisher: Lancaster University
Year: 2010
OAI identifier: oai:eprints.lancs.ac.uk:34959
Provided by: Lancaster E-Prints

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