Considering consent: a structural equation modelling analysis of factors influencing decisional quality when
Stuart G Nicholls1, Kevin W Southern
1Department of Epidemiology and Community Medicine, University of Ottawa, K1H 8M5, Ottawa, Canada, snicholl@uottawa.ca.
Insights
Parental perceptions of decision quality in newborn bloodspot screening (NBS) are improved by increasing perceived choice and positive attitudes towards screening. Understanding the context of screening is key to improving parent decision-making.
Area of Science:
- Public Health
- Medical Ethics
- Health Psychology
Background:
- Newborn bloodspot screening (NBS) programs present an ethical challenge balancing public health benefits with informed consent.
- Parental decision-making regarding NBS involves complex factors influencing perceptions of quality.
Purpose of the Study:
- To investigate factors influencing parental perceptions of decision quality when accepting NBS.
- To analyze the relationship between attitudes, knowledge, choice, and decision quality in NBS.
Main Methods:
- Survey of 154 parents who had children screened in 2008 (32% response rate).
- Utilized structural equation modeling to analyze latent constructs of attitudes to medicine, perceived knowledge, attitudes to screening, and perceived choice.
- Primary outcome measured was decision quality.
Main Results:
- Increased perceived choice and positive attitudes towards screening significantly enhanced decision quality.
- Perceived knowledge positively correlated with attitudes towards screening (0.375, p < 0.01).
- Perceived choice also positively influenced perceived knowledge (0.806, p < 0.01).
Conclusions:
- The presentation of screening information and the management of consent processes are critical determinants of decision quality.
- Understanding parent decision-making requires examining the context of screening, not just information content or recall.
Introduction:
Newborn bloodspot screening (NBS) programs generate an ethical tension between promoting the uptake of effective public health measures and facilitating informed consent from individuals.
Aim:
To explore the factors that affect parental perceptions of decision quality when accepting NBS METHODS: Survey of parents with children screened in 2008 (n = 154, 32% response rate). Questions were based on previous research and existing measures. The primary outcome was decision quality. Predictors were latent constructs of Attitudes to medicine, Perceived knowledge, Attitudes to screening, and Perceived choice. Responses were analysed using structural equation modelling.
Results:
Increases in perceived choice and positive attitudes towards screening improved decision quality. Perceived knowledge had a significant and positive relationship with attitudes to screening (0.375, p < 0.01) as did perceived choice on perceived knowledge (0.806, p < 0.01). Attitudes to screening were also significantly influenced by attitudes to medicine, although less so than the effect of perceived knowledge. The model had good fit on all indices (χ(2) = 61.396, df = 48, p = 0.093; CFI = 0.979; RMSEA = 0.043).
Conclusions:
Our results implicate the presentation of screening as a key determinant of decision quality both in terms of the immediate information regarding the potential benefits and risks, but also the way in which consent processes are managed. If we want to better understand parent decision-making we need to go beyond analyses of information content, or parental recall of this, but consider the context in which screening is provided.
