A “Thick” Conception of Children’s Voices: A Hermeneutical Framework for Childhood Research

Unheard Children’s Experiences

The following narratives are drawn from my professional experience as a nurse, psychologist, and clinical ethicist. Names and other details have been modified to protect confidentiality.

Nathan is 12 year old and has lived with a degenerative neuromuscular illness since early childhood, which has affected his motor function (including breathing). He requires mechanical ventilation to sustain his vital functions. He lives at home with his mother and sister but has been hospitalized recently for treatment of aspiration pneumonia. Although his mother seems to understand everything he says, health care providers (HCPs) find him difficult to understand because his voice is faint. His facial muscle function is weakened, so it is also difficult to interpret his nonverbal communication. He is frequently silent and teary. HCPs sense he is very unhappy, but they have difficulty in understanding what he is unhappy about specifically, and what they can do to help him feel better.

Jessica is 2 months old and endured severe asphyxia during birth, which resulted in hypoxic-ischemic encephalopathy. She currently requires enteral (i.e., tube) feedings to maintain her nutrition, as she is unable to suckle and swallow adequately. Neurologists have projected that she will be severely disabled for as long as she lives, including severe impairment of her mental functions. Her parents and the HCPs caring for her are trying to decide whether it is right to continue to sustain her life with enteral feedings and other treatments. They are trying to understand her daily experiences of medical treatments to determine how these may affect her well-being but are unsure how to interpret her facial and bodily expressions and how these should be related to her best interests.

William is 10 years old and has been admitted to hospital for treatment of an end-stage recurrence of cancer. He has lived with cancer since he was 2 years old. He is currently undergoing chemotherapy to slow the course of his cancer. Current treatment seems to be effective in prolonging his life—likely for several weeks or months. One night he told his nurse that “I do the chemo because my parents want me to.” He explained that he did not want to be in hospital and he did not like how he felt with the chemotherapy. He also explained that he knows the cancer is serious and that he may die soon. He added that he did not want the nurse to tell his parents about this conversation because he thought it would upset them, which he did not want to do.

David is 8 years old and was admitted to hospital because he lost consciousness briefly. His cardiologist thinks this was likely due to a cardiac arrhythmia but has been unable to establish a definitive diagnosis based on this sole episode. The cardiologist has proposed surgical insertion of an implantable cardioverter-defibrillator as a precautionary measure. David was present when this was proposed to his parents. His parents stated that they did not want him to undergo surgery without having a clear diagnosis, while the cardiologist expressed significant concern about the harms that could result if this recurs, including potential death, while he considered this intervention as minor surgery (involving only one night in hospital). Throughout this discussion, David was silent. When he was asked directly by the cardiologist what he thought was best for him, David shrugged his shoulders, seeming to imply that he didn’t know.

Maria is 15 years old and has been admitted to a mental health unit for treatment of severe weight loss. She was diagnosed with anorexia nervosa. A court authorization was required to admit her because she refused to be admitted and has refused treatment. Her primary physician attested that her weight loss and inadequate nutrition are compromising some of her vital functions. She has stated many times to her parents and several HCPs that she does not want to increase her food intake. She would actually like to lose more weight. She has twice had a nasogastric tube inserted to provide enteral feedings, for which she was restrained because she resisted these treatments.

Introduction

Each of these narratives raises concerns about children’s experiences and well-being (NB: See Next Section for Key Definitions That are Applicable Throughout This Article). Advances in childhood studies have shed light on how to understand and respond to these concerns in a manner that is maximally attuned to each child’s specific interests (Esser et al., 2016; Greene & Hogan, 2005; James et al., 1998; James & Prout, 1997; Lee, 2001; Prout, 2000; Qvortrup, 2005). Among these advances, a significant body of work has focused on “listening to children’s voices” (Spyrou, 2016). Listening to their voices can foster respectful regard for their experiences and promote the recognition of children as active agents; that is, persons who have interests and capacities to participate in discussions and decisions that affect them and other people (Montreuil & Carnevale, 2016).

However, “listening to children’s voices” can have many different forms, and the ways that these voices should be related to children’s agency can be unclear. Are all expressions agential? What can we infer from silence, apparent nonexpression, or difficult-to-understand expressions? Indeed the narratives described above highlight situations where children’s voices are frequently unintelligible for researchers or professionals who work with them.

Several common misconceptions can impede “listening to children’s voices.” First, researchers and professionals tend to draw on caricatural universalized stage-based—and outdated—models of child development that characterize children’s perspectives as immature and incapable and thus not substantively meaningful (Hogan, 2005). Second, initiatives calling for greater attention to children’s voices tend to have a “psychosocial” aim rather than an “ethical” one. That is, children are commonly “listened to” as a demonstration of compassion to comfort children’s distress (e.g., children expressing distress toward treatments) without also recognizing children’s voices as agential expressions that should have ethical weight in making decisions that affect them (Carnevale et al., 2015). The “ethical” significance of children’s voices is further developed below, where the moral meaningfulness of these voices as demonstrations of agential expression is discussed within a hermeneutical perspective. Third, some outlooks relate agency to autonomy, recognizing agency solely in persons who are considered legally autonomous decision makers who can bear responsibility for the consequences for their decisions (Carnevale, 2012). This significantly limits which persons can be recognized as agents. Fourth, participation in decision making is commonly restricted to persons who are deemed to have cognitive and communication capacities associated with legal conceptions of decision-making capacity (Carnevale et al., 2017). This can impede the participation of persons with cognitive and communication differences who may still have strong participation interests and capacities. In short, children can encounter various forms of “epistemological oppression” (Burns et al., 2018) toward the recognition of their voices as morally meaningful.

This problem is amplified by problematic thin conceptions of voice. A thin conception of voice is focused on explicit utterances and their intelligibility by others, regarding statements as direct representations of a person’s (individualistic) independent will. A thick conception of voice regard expression as always hermeneutical—relationally, socially, culturally, and politically embedded—including generational embedment. The latter refers to generational ordering, which “relates to the on-going social construction of the complementary categories of children and adults, and makes it possible to analyse the discourses and practices in which different positions, forms of authority, responsibilities and access to resources are distributed across the generations” (Esser et al., 2016, p. 7).

Understanding voices involves a thick interpretive discernment of utterances, silences, and bodily expressions in light of related expressions by others and the “webs of significance” in the surrounding context that can help reveal the meanings of voices (i.e., referring to Geertz’s “webs of significance” as sociocultural outlooks and practices that generate and maintain local meanings; Geertz, 1973).

The aim of this article is to advance a thick conception of children’s voices rooted in an agential view of children. This builds on prior work promoting the recognition of children’s agency, including research conducted within the Views on Interdisciplinary Childhood Ethics (VOICE) research program that I lead (www.mcgill.ca/voice). Although the principal focus of this article is on eliciting and understanding children’s voices in research, I also refer to professional practice because (a) hermeneutical inquiry practices with children can be similar in research and in professional practice and (b) professional practice improvement is an important goal of childhood research. Moreover, although examples frequently refer to health-related inquiry, the ideas developed in this article are applicable to research and practice with children from other realms as well (e.g., education, child welfare, community settings, youth justice).

Definitions and Orienting Notes

For the purposes of this article, the following definitions are applicable throughout: (a) The terms children and young people are used interchangeably and along with childhood refer to all persons below the age of majority (Ages can vary somewhat in different jurisdictions. I acknowledge that children may not appear adequately inclusive of older young people referred to as youths. I have chosen to use children to maintain congruence with terms used in the field of childhood studies and with the definition of children in the United Nations Convention on the Rights of the Child [UN-CRC], 1989); (b) older people refers to persons commonly described as adults; (c) children’s voices is used to recognize pluralism in childhood perspectives rather than the voice of the child to guard against “homogenizing” universalist depictions of diverse children’s perspectives; (d) children’s interests relates to the meaning implied in best interests, referring to matters of particular importance to a child (Kopelman, 2010), rather than leisure-type interests that are commonly implied by lay uses of the term; (e) recognition implies an acknowledgment of the legitimacy of a particular claim, drawing on Charles Taylor’s Politics of Recognition (Taylor, 1992); (f) professionals refers broadly to practitioners within professions that work with children (e.g., education, social work, psychology, law, health care professions).

Listening to Children’s Voices: A Hermeneutical Framework

Numerous childhood studies scholars have critiqued dominant conceptions of childhood that have been rooted in universalized stage-based developmental conceptions of childhood (Esser et al., 2016; Greene & Hogan, 2005; James et al., 1998; James & Prout, 1997; Lee, 2001; Prout, 2000; Qvortrup, 2005). These have perpetuated approaches to children as immature and incapable of meaningful engagement in matters that affect them and others, favoring strategies that “control” their behaviors, “educate” them, and “protect” them until they have autonomous decisional capacity (Hogan, 2005; Montreuil, Floriani, et al., 2018). More current child development research has advanced transactional models that characterize development as a bidirectional interplay between children and their social environments (Burman, 2017; Sameroff, 2009)—highlighting that development is rooted in social contexts. However, these transactional conceptions of children’s development are largely absent from the dominant conceptions of children depicted within the child-related professional literature (Montreuil, Floriani, et al., 2018).

Childhood studies researchers have highlighted significant theoretical, methodological, empirical, and normative problems with these dominant approaches (Esser et al., 2016; Hogan, 2005; James et al., 1998; James & Prout, 1997; Lee, 2001; Prout, 2000; Qvortrup, 2005). These reveal that children have aspirations and capacities to participate in promoting their interests as well as the interests of others; that children are active agents. Suppression of the recognition of children as agents, through the use of dominant stage-based conceptions of children, can be considered a form of epistemological oppression (Burns et al, 2018). Emancipation from this oppression can be fostered through a paradigmatic shift in how children and childhood are imagined toward agential conceptions of young people (Carnevale, 2016).

Recognizing children as agents implies an acknowledgment of their experiences as morally meaningful (Carnevale, 2012, 2016; Carnevale et al., 2015). That is, a child’s expression of distress or joy is not a merely emotional expression calling for adult compassion or celebration (respectively). Rather, children’s expressions are agential expressions of their aspirations and related concerns, which also inform our understandings of their best interests; the latter being the ethical standard that should orient all actions involving children (Kopelman, 2010).

In short, children’s experiences are morally meaningful and should imply “ethical weight” in discerning what is right and wrong for them. This view of experiences has been further articulated as moral experience within our VOICE research. That is, “moral experience encompasses a person’s sense that values that he or she deems important are being realised or thwarted in everyday life. This includes a person’s interpretations of a lived encounter, or a set of lived encounters, that fall on spectrums of right-wrong, good-bad or just-unjust” (Hunt & Carnevale, 2011, p. 2).

Listening to children’s voices is a necessary condition for understanding their interests and recognizing their agency. It is therefore important to examine the paradigmatic foundations of listening to an agential thick conception of children’s voices (Carnevale, 2016): “What are children’s voices?” (ontology), “How can children’s voices be known or understood?” (epistemology), and “How can children’s voices be elicited and interpreted?” (methodology).

Methodological Approaches to Listening to Children’s Voices

In his renowned paper “Can Ethnography Save the Life of Bioethics?,” Hoffmaster (1992) called for bioethics to turn to ethnography to develop stronger contextual orientations for bioethical analysis. He argued that moral matters could not be adequately understood without a rigorous ethnographic analysis of the sociocultural underpinnings of the concerns being analyzed. Bridging Hoffmaster’s work with Geertz’s (1973) notion of ethnographic thick description, I developed a framework for a thick bioethics approach to clinical practice with children (Carnevale, 2005), which I further developed more recently as a hermeneutical rapprochement framework for practice (Carnevale, 2017). The latter draws further on Taylor’s work on hermeneutics and social imaginaries (Carnevale, 2013; Taylor, 2004). Moreover, in an attempt to address communication challenges that can arise in working with children, particularly children who may communicate differently, I developed the notion of empathic attunement (Carnevale, 2009). This retrieves initial conceptions of empathy that involve not only trying to sense the emotional perspective of the “other” but also implies a striving to grasp the person’s understandings of the situation to the greatest extent possible. Empathic attunement can be considered an operationalization of Gadamer’s (1960/1994) fusion of horizons or Taylor’s (1992) rapprochement describing an ethical stance of authentic humility and genuine interest in understanding the experiences of another, including a young child, an infant, or a child who communicates differently. This requires an a priori commitment to valuing the significance of a child’s experiences and a hermeneutical framing of the inquirer’s (researcher or professional) preunderstandings, mindful of the risks of inadvertently imposing one’s own views or interpretive orientation to the perspectives of the children we are trying to understand (e.g., a priori assumptions that all children’s experiences can be categorized according to stage-based developmental categories). For instance, little is known about the emotional or existential experiences of some children; for example, the extent to which these resemble or differ from the experiences of older people (Carnevale, 2009). Drawing on concerns highlighted in the opening narratives, when an infant expresses sentiments that resemble common understandings of joy and wonder or apprehension and despair, or when an older child with cognitive differences may seem to be content or suffering, or when a child that communicates differently seems to express agreement or disagreement, or when a child is silent and appears disinterested in a particular discussion, significant caution should be exercised to guard against projections of the inquirer’s presumed meanings of these expressions—favoring instead an empathically attuned orientation.

Hermeneutical inquiry can sometimes be challenging, particularly in empirical research or professional practice settings where there may be significant time or relational restrictions in access to participants. This form of inquiry originated with textual analyses (e.g., analyses and interpretations of religious texts), where there are few restrictions in accessing the principal sources (i.e., documents). To facilitate the operationalization of hermeneutical inquiry with children, some strategies can facilitate thick elicitation of children’s voices and foster rich understandings of their experiences. In our VOICE work, we use guiding questions as an orienting strategy (Carnevale, 2017). Guiding questions can be developed in advance and continually adapted throughout the course of an inquiry, in consultation with collaborators (including young people), to help ensure the inquiry is maximally attuned to the particularly meaningful aspects of experiences within a projected participant group. I have published a general model of guiding questions for inquiry with a broad focus on moral experiences, that is, experiences that are morally meaningful (Carnevale, 2017). These guiding questions should be (a) adapted for the specific aims of a particular inquiry and (b) continually adapted through the course of the inquiry to address arising questions or analytical speculations.

These questions orient the researcher in developing specific discussion questions (e.g., interview guides), follow-up “probes,” and other forms of inquiry (e.g., observation guide for participant observation), which need to be adapted to participants’ styles of expression. These approaches also need to be adapted on an individual basis as child participants can have unique ways of expressing their experiences, particularly younger children and children who communicate differently. An initial step in this process is to clarify how a participating child expresses approval or disapproval to discussion questions as well as consent/assent toward participating in a project or discussion. Some young people may prefer or may require an interlocutor to help interpret their responses in the inquiry (e.g., parent, professionals who know the child well).

Voices can be elicited thickly through conversations as well as other methods or activities (e.g., play, art, diaries). Augmentative and alternative communication methods can be used with children who communicate differently (Carnevale et al., 2017; Montreuil, Teachman, & Carnevale, 2019; Teachman et al., 2018). These methods can explore initial participant perspectives as well as follow-up “deeper dive probes” and clarification questions—oriented by the guiding questions outlined below. Adapted from the moral experience research framework (Hunt & Carnevale, 2011), questions can be framed to explore “What is important for the child participant?” as well as “How is this important—what is at stake?” in light of the inquiry’s specific aims. Further inquiry can explore how these things that matter for the child are bolstered or thwarted by the social context.

Recognizing the Political Dimension

Given that political structures and processes are inherent in social life, hermeneutical inquiry should examine how they operate in the horizons of significance and social imaginaries of the study context (Carnevale, 2017). These are shaped through political structures and processes that are grounded in particular outlooks, striving to perpetuate corresponding conceptions of good/bad, right/wrong, and just/unjust. To ensure that hermeneutical inquiry is attentive to this political dimension, additional guiding questions should be considered. Politically focused guiding questions that can be directed to personal disclosures, observations, and documents can include, for example, Which views are dominant/favored/privileged? Which advantages/disadvantages and harms/benefits are borne by whom in relation to these views? Which advantages/disadvantages and harms/benefits are particularly valued by those involved in the situation? Does the distribution of advantages/disadvantages and harms/benefits seem fair/unfair? Are there concealed advantages/disadvantages and harms/benefits? Which persons/groups and processes are perpetuating this concealment?

Voicing Participation

Eliciting children’s voices and recognizing their ethical significance can help promote their participation in discussions and decisions that affect them, supported as a child’s right in the UN-CRC (1989). Various forms of children’s active participation in research are described in the literature, which call for particular ways to engage children’s voices (Montreuil & Carnevale, 2018; Veale, 2005). These include (a) developing participatory research approaches with children, (b) facilitating their participation in the review of research proposals, and (c) promoting their involvement in knowledge utilization initiatives such as policy making and the management of children’s services (e.g., health care). Participating in such initiatives—contributing to discussions and decisions that affect their broader children’s community—can further reveal additional political dimensions of children’s agency. Children are not exclusively self-interested. They are community members and can have interests, aspirations, and concerns regarding their community and how various research or practice initiatives can affect their lives. Although there is a small body of literature describing these forms of children’s participation, there is little knowledge of how such participation should be undertaken (Montreuil & Carnevale, 2018). Which children should participate and in what manner, to ensure research is conducted in a participatory manner? Should these children be drawn from the group of children who actually participate in a study to ensure that they are currently living circumstances that correspond closely with those of the research participants group? Or, is it preferable to draw on older or otherwise different children who are currently living with some “distance” from the experiences examined in the study? Should these children contribute as advisors for the investigators (e.g., as stakeholders), or should they partner with the investigators (e.g., as coinvestigators or collaborators)? What experiences (e.g., specific illness or social experiences examined in the study) or capabilities (e.g., cognitive or expressive abilities) are required for children to contribute to these roles? Which specific activities should they participate in and in what manner (e.g., participate in meetings or review texts; in person or through online channels)? In participatory research with children, what are the implications for older persons with responsibilities toward those children (e.g., parents, professionals)? How should their potential duties to protect children be reconciled with a recognition of children’s agency? For example, under which conditions should parental consent be required for children to participate in projects as advisors or coinvestigators? More research is needed to identify the optimal ways to address these questions. Some specific approaches used by our VOICE team are described further below.

Research Ethics and Children’s Voices

The recognition of children’s voices, whether for research or professional inquiry, is important not only for the substantive understandings of children’s experiences that they can help advance but also for ensuring ethical practices toward their participation in these inquiries (Carnevale et al., 2008; Hill, 2005). The latter commonly require, to the greatest extent possible, the child’s expression of voluntary willingness to participate in the inquiry (i.e., through informed consent or assent, depending on which standards apply) as well as respect for children’s privacy and confidentiality regarding their voices. The ways in which respect for consent/assent and privacy/confidentiality are ascertained with each participating child require an authentic conversation with the child, providing ample opportunities for the child to raise questions or concerns and clearly express agreement or disagreement regarding participation in the study. Creating opportunities for children to agree (or disagree) to participate in research can further foster expression of political dimensions of their agency by deciding whether or not to support the contributions to knowledge that can result from participating in a particular study and judging if this research would be worthwhile for other children. Moreover, ethical approval of research involving children requires a determination that the benefits of the research for children outweigh the risks. Participatory approaches, such as the ones described above, can help ensure that these benefits and risks are understood from children’s perspectives to the greatest extent possible, as implied by this research ethics standard.

Listening to Children’s Voices in Qualitative Research

In this section, I describe various methods and approaches that our VOICE work has drawn on to help elicit expressions and better understand children’s experiences and agency, as well as recognize the significance of their participation, based on a thick conception of children’s voices. The elicitation of children’s voices requires relational approaches (Carnevale et al., 2017). Relational aspects of hermeneutical inquiry with children can be both a means and an end. As a means, relational engagement with children is required for promoting trust, respect, and empathic attunement, as well as countering power differentials, which are necessary conditions for fostering children’s disclosures and ensuring thick interpretations and understandings of children’s experiences. As an end, developing authentic respectful relationships with children helps ensure their meaningful (political) participation in discussions and decisions that affect them.

Particularly crucial is the recognition of children as partners with (a) knowledge and expertise regarding their experiences and (b) views on priorities for knowledge and practice advancement that can affect them and other children (Montreuil & Carnevale, 2018). It is important to develop methods that can optimize the participation of young people in the development, implementation, analysis and interpretation, and knowledge utilization aspects of every study that involves or affects them. In most of our VOICE research, we invite young people to work with us as advisors, seeking their input on study design, participant selection procedures, adapting data generation tools (e.g., interview and observation guides), as well as data analysis, interpretation, and utilization (see, e.g., Kooiman et al., 2012; Kutcher et al., 2019; Montreuil & Carnevale, 2018; Montreuil, Thibeault, McHarg, & Carnevale, 2018; Montreuil, Thibeault, McHarg, & Carnevale, 2019; Sebti et al., 2019; Sherman et al., 2011). Most commonly, this advisory engagement has involved young people within primary school and high school, although we have sometimes consulted with younger children as young as 3 years old, adapting their forms of participation to their interests. They can choose to contribute through group or one-on-one meetings, or online exchanges—with or without their parents’ presence. Our VOICE team has established formal partnership agreements with various youth leader groups (e.g., children living with disabilities, Indigenous children), with whom we can consult early in the development of a study or a knowledge mobilization project.

Common approaches to research—such as the use of interviews or self-report instruments (e.g., paper-and-pencil or online forms) conducted in “artificial” settings (e.g., private interview rooms)—involve methods that are foreign to children’s usual ways of engaging in their worlds and expressing their voices. Childhood researchers should adapt their methods to optimally align with children’s preferred ways of sharing their experiences, while also entering into children’s own social contexts where they can share their experiences through their usual ways of expression—using oral as well as other forms (Greene & Hogan, 2005). Our preferred VOICE research method is participant observation documented with field notes; noting the full scope of children’s expressions (e.g., verbal, bodily) within their own social spaces (e.g., schools, hospitals, community organizations; Carnevale et al., 2008). While conducting participant observation, we try to elicit children’s expressions of their thoughts and sentiments through informal interviews (i.e., casual chatting), children’s preferred expressive activities (e.g., art-making, play), and structured activities. The latter are frequently used toward the end of a study, developed in consultation with study participants (including children) as a way of exploring additional dimensions of children’s experiences as well as verifying provisional data interpretations (e.g., healthy pizza-making workshop to further explore children’s views on health and nutrition, performing a community play to examine children’s political agency; Kooiman et al., 2012; Kutcher et al., 2019; Sherman et al., 2011).

Researchers also need to work out how older people should (or should not) participate in childhood inquiries, in ways that will promote children’s agential participation and optimize researchers’ thick understandings of children’s voices and experiences (Montreuil & Carnevale, 2018). Older people can serve as “protective gatekeepers” who can enable access to child participants (e.g., parents with the authority to provide consent for their children’s participation), experienced community advisors (i.e., with knowledge on local viewpoints, norms, and practices), child participants’ family and community members who can serve as children’s voice interlocutors (i.e., with children who are difficult to understand or communicate differently) or as local experience interpreters (i.e., to help ensure thick interpretations of children’s voices, anchored in local community horizons of significance and social imaginaries).

Concluding Remarks

The children’s narratives presented at the beginning of this article highlighted numerous complex challenges involved in eliciting and understanding children’s voices. I have argued for the ethical recognition of children’s voices as morally meaningful expressions of agency. This calls for a thick conception of children’s voices, acknowledging that children’s expressions are relationally embedded expressions of their agency. Understanding children’s voices and experiences requires hermeneutical approaches that can help discern what is meaningful in a particular situation. I have discussed ontological, epistemological, and methodological shifts that are required for hermeneutical inquiry with children and have outlined specific methods that can be used, oriented by guiding questions. This hermeneutical methodology can help advance our understanding of children’s aspirations and concerns in research and in professional practice. For detailed discussions of how hermeneutical inquiry can be used in situations such as those described in the opening narratives—whether for research or professional practice—readers can consult other work published by our VOICE team regarding the voices of children who communicate differently (Carnevale et al., 2006, 2017), newborns’ voices (Carnevale et al., 2019), children living with mental health concerns (Montreuil, Thibeault, et al., 2018; Montreuil, Thibeault, et al., 2019), keeping secrets/respecting privacy and confidentiality (Noiseux et al., 2018), seeking consent and assent (Carnevale, 2012), practicing empathic attunement (Carnevale, 2009), or thick inquiry with children (Carnevale, 2005, 2017).