Parental reflections on choice and decisions to accept newborn bloodspot screening. snicholl@uottawa.ca A total of 154 completed questionnaires were received (32% response rate) Over 80% of parents felt that it was expected that their child had the heel prick. 40% disagreed to some extent that the heel prick was presented as an optional test. Over 30% of respondents felt that they did not have the choice to decline the test. Over 10% did not feel that they had made an informed choice. Parents who felt they had a greater choice were less uncertain in the decisions made, with choice having a greater effect on perceived decisional quality than attitudes towards the screening itself (see figure). Discussion Availability of choice appears to be a greater issue than ability to make a choice. Choice elements were affected by the presentation of screening and, consistent with previous studies, experienced as a routine procedure. 4,5 This was interpreted by some parents as something that they did not have a choice in. The importance of choice is shown by its significant impact on the perceived quality of decision made by parents. The factors identified within the interviews may be appropriate avenues for development, with the provision of information pre-natally being spontaneously offered by parents as a way to facilitate decision-making. References 1. Creswell J, Clark VP. Designing and conducting mixed methods research. Thousand Oaks: Sage publications; 2007 2. Boyatzis R. Transforming qualitative information. Thousand Oaks: Sage publications; 1998 3. Kline, R. Principles and practice of structural equation modeling. New York: The Guilford Press: 2005 4. Parsons E, Moore C, Israel J, et al. Emphasizing parental choice on newborn screening. British Journal of Midwifery 2005; 13: 165-168 5. Detmar S, Hosli E, Dijkstra N, et al. Information and informed consent for neonatal screening: opinions and preferences of parents. Birth 2007; 34: 238-244. Introduction Newborn bloodspot screening (NBS) is an international population health intervention. Programs such as this resemble traditional public health programs because they are targeted at large groups of the population and are offered as preventive interventions to a population considered healthy. Such programs potentially generate an ethical tension between promoting the uptake of supposedly effective public health measures and facilitating informed consent from individuals. To date there is a lack of understanding about how parents experience choice given this tension. Methods Two-stage exploratory sequential mixed methods design 1 using interviews and survey. Stage 1: Interviews Parents were identified through laboratory records and organisations that provide support for parents with young children. Parents were excluded if they were unable to converse freely in English. Interviews were audio- recorded, transcribed verbatim and analysed using a thematic analysis approach 2 . Stage 2: Survey A random sample of n=500 parents were drawn from laboratory records. Scales were constructed from responses using a measure of internal consistency (Cronbach’s alpha) and the effect of choice on parental decisional quality evaluated using structural equation modelling. 3 Results From the interviews two overarching themes of choice emerged: the proceduralisation of newborn screening and the concomitant effect on the perceived availability of choice (Avch) and the self-assessed ability to make a choice (Abch). Proceduralisation and the availability of choice Parents recalled being told that "we're going to come and do this..." Indeed several parents prefaced their interviews by saying that they hadn't considered the screening a choice. "It was just [...] it’s just, not like a tread mill but you realise that you are part of this as I said, system." This experience was perpetuated by the way that the screening was included with other post-natal checks that were being conducted by the midwife, both for the child and for the mother. Competence, constraints and the ability to make a choice For some parents the lack of time between being informed about the screening and the midwife wanting to conduct the screening meant that actually making a considered and informed choice was difficult, if not impossible. For others the difficulty lay in other aspects of the time, with some questioning their competence and ability to focus and make a decision. "I think just my emotions kicked in, hormones or something like that. So I was, I felt more of a sound mind when I was going to antenatal" This was reflected in the way a number of parents stated a preference for the provision of information pre-natally. Stuart G Nicholls 1,2 1 Department of Epidemiology and Community Medicine, University of Ottawa, Canada. 2 Department of Politics, Philosophy & Religion, Lancaster University, UK Figure 1. Path diagram showing the proposed decision-making model with unstandardised parameter estimates. Standardised parameter estimates are in parentheses. NOTE: *= p≤0.05, **= p ≤ 0.01, n=151 (variable errors and disturbances not shown).