Children's participation in genetic counselling : a theme-oriented discourse analytic investigation

Abstract

The importance of children’s participation in matters that affect their own lives is generally acknowledged and highly advocated in academia. The United Nation Convention on the Rights of the Child enacted since 1989 foregrounds children’s rights to express their views. One fundamental research site to study children’s participation is healthcare settings (Lansdown, 2000). While previous research on children’s participation has largely been in primary care and paediatric settings, few studies have been conducted on genetic counselling. Against the backdrop of childhood protectionist and liberationist ideologies (Archard, 2004), this study investigates the discourses in genetic counselling involving children, particularly regarding the ‘how much’, ‘where’ and ‘how’ of children’s participation in genetic counselling for Sudden Arrhythmic Death Syndrome.

The study explores 23 genetic counselling sessions which include 16 families with children ageing from 3 to 17 years old. Drawing on activity type theory (Sarangi, 2000, 2010a) and theme-oriented discourse analytic approach (Roberts & Sarangi, 2005; Sarangi, 2010b), the focal theme of ‘children’s participation’ is examined using both quantitative and qualitative perspectives (Angouri, 2010; Culpeper et al., 2008). The study also draws on several analytical concepts, including multimodal participation frameworks (de León, 2011; Goffman, 1981; Goodwin & Goodwin, 2004; Ochs et al., 2005) and interactional epistemics (Heritage, 2012a, 2012b) to examine how children’s participation is negotiated in interactions between genetic professionals, parents and children.

Results from Interactional mapping reveal that children occupy a marginalised participation role in terms of both turn frequency (number of verbal turns) and turn volume (number of words uttered). Based upon the variations in children’s participative patterns, multiple regression models suggest that a child’s age constitutes a significant contributing factor to children’s verbal participation in genetic counselling. Other significant factors include the presence of a father, a paediatrician, or a clinical geneticist as well as condition types (e.g. rarity of sub-conditions). Structural mapping indicates notable verbal input from children in ‘medical history discussion’ and ‘assessment of understanding’.

Thematic mapping and microanalysis of children’s participation in medical history discussion suggest several socio-interactional factors that impact children’s participation, including children’s preferences and psychosocial needs, interactional competence, epistemic status, and their ‘sense of entitlement’ to participate and to challenge adults’ epistemic stances. The findings support the notion of children's participative agency, even when they do not contribute to the interactions verbally (Clemente, 2009). The analysis of the ‘assessment of understanding’ phase demonstrates that children’s increased verbal participation can also result from adults’ assumptions of children’s lower epistemic status and authority (Heritage & Raymond, 2005) as regards their genetic condition.

The study provides reflections useful for both academic scholars and genetic professionals. The methodological framework is extended to integrate quantitative statistical analysis and qualitative analysis which offers multilevel understanding of the activity of genetic counselling. The study also presents evidence of the salient discourse features of childhood genetic counselling. The findings of the study foreground the importance of avoiding presumptions on children’s (lower) epistemic status held by clinical practitioners when interacting with children.