1 Introduction

The right of children to express their views on any issue concerning them is a general principle of the UN Convention on the Rights of the Child (CRC) and a core value of children’s human rights. However, children may not be able to grasp all the aspects and complexities of decisions that have to be taken with regard to their lives. This is why the CRC has introduced the concept of the child’s evolving capacities (CRC, Art 5), which says that adults must provide appropriate guidance to children in the exercise of their rights. The ability of the child to make decisions about their life evolves gradually, and the child’s views must be given due weight according to that child’s age and maturity (CRC, Art 12). This means that decision-making is normally a shared process where the roles and autonomy levels of the child and the adult(s) involved are not clearly determined. In many spheres of children’s lives such ambiguity does not cause any fundamental problems; children and adults negotiate children’s rights and duties daily. In healthcare, however, treatment must be based on free and informed consent. Therefore, healthcare professionals may justifiably question who has the right to give consent when they treat a child-patient. Normally, the domestic laws of countries put in place clear rules; for example, by determining an age limit from which the right to decide transfers from the parent to the child. However, there are countries, such as Estonia, Sweden, Austria and others (European Union Agency for Fundamental Rights, 2018), where the healthcare professional must judge whether the child is mature enough to make decisions about his/her health independently.

Scholars from different fields have tried to determine the principles for assessing the competence and capacity of children (e.g., for legal aspects: Daly, 2020, and other authors in the special issue of the International Journal of Children’s Rights 28, 2020; for developmental and neuroscientific perspectives, e.g. Grootens-Wiegers et al., 2017), and have looked for standardised tools for assessing the competence of children in healthcare (Hein et al., 2015; Ruhe et al., 2015). However, such assessment can never be fully standardised, as every child and every situation is unique. Moreover, the decision-making competence of children is not only dependent on their own capacity, but essentially also on the attitudes of their parents and the healthcare professionals (Mårtenson & Fägerskiöld, 2008), on the information they are given (Adewumi et al., 2001), on their disease-experience (Pyke-Grimm et al., 2019) and other situational and contextual factors. Therefore, exploring the relational process of child-patient autonomy-making is as important as studying the developmental and neuroscientific aspects or legal principles of patient consent.

There seems to be a consensus among scholars that there is a gap in the research into the involvement of children in decision-making, and that future research must study inter alia how parents, paediatricians and children negotiate the extent of involvement (Ruhe et al., 2015), how child-patients interact with their families in decision-making (Pyke-Grimm et al., 2019) and what factors contribute to or inhibit a child’s involvement (Moore & Kirk, 2010). There has also been criticism that there is an over-reliance on interviews as a research method (Moore & Kirk, 2010) in research about child-patient involvement in decision-making. Little is known about what actually happens in child-adult communication during clinic visits.

The aim of this paper is to explore child-patient autonomy in decision-making during clinic visits. More specifically, the study explores how child-patient autonomy is exercised in a child-parent-doctor triadic relationship and how communication among all parties is affected by the fact that the patient is represented by two individuals – the child and the parent (i.e., a dual patient). The paper studies whether patient autonomy is clearly attributed either to the child or to the parent by doctors, or whether it remains blurred. By analysing these questions, the study enables us to pinpoint obstacles and identify how to encourage child-patient participation in decision-making, and thereby make recommendations for improving clinical practice and parenting. Why is this important? Involving child-patients in decision-making increases their self-esteem, reduces their fear and makes them more satisfied with their treatment (Adewumi et al., 2001; Kelly et al., 2017). This in turn contributes to better adherence to the medical treatment, which advances the children’s wellbeing overall.

This study draws data from a corpus of ethnographic observations of appointments with doctors involving 31 children and young people ranging in age from 2 to 19 years. The empirical data is analysed thematically within the framework of Shier’s five-level participation model, which defines listening to children as the lowest level of child participation and children sharing decision-making power with adults as its highest level.

From the perspective of its disciplinary boundaries, this article falls within children’s rights studies and childhood sociology, and aims to bridge these streams. This is done by combining the model of child participation (Shier, 2001) with a relational sociological approach (Burkitt, 2016; Dépelteau, 2015; Donati, 2015; Prandini, 2015).

The article begins by introducing the theoretical framework for the study. First, participation models established in children’s rights scholarship (Hart, 1992; Lundy, 2007; Shier, 2001) are explored. This paper concentrates on Shier’s model, as it facilitates the deconstruction of the participation process into procedural fractions or stages, reflecting the status of a child’s involvement in the decision-making process. Second, the paper adds a relational angle to the concept of participation by analysing how relationality affects the autonomy-making process. The subsequent sections of the paper introduce the methods used in this study and analyse the findings. The discussion section analyses how triadic relationality could be reflected in children’s rights-based participation models and how bridging the relationality with the normative framework of child participation could help shed light on practical issues, such as who is obliged to do what in a healthcare relationship. This will help adults, both doctors and parents, to better define and understand their roles, and thereby encourage the meaningful participation of children in decision-making. The discussion section also debates the child’s right to be a decision-maker, analyses the parents’ role in a healthcare relationship, and elaborates on educational and procedural implications for healthcare policymaking.

2 Theoretical Approach

The underlying basis of the theoretical approach applied in this article is normative. The CRC lays down the fundamental principle of children’s autonomy – children must be treated as the subjects of their own rights. Article 12 of the CRC requires that the child who is capable of forming his or her own views must be assured the right to express those views freely in all matters affecting the child, whereby the views of the child must be given due weight in accordance with the age and maturity of the child. In decision-making about one’s health, the principle of autonomy in medical ethics requires that any medical intervention must be based on free and informed choice. Being autonomous means that the patient is not under the control of others and is free from limitations (Beauchamp & Childress, 2001). By respecting patient autonomy, their right to hold views and have personal values is honoured (Herring, 2018).

Children exercise their autonomy by participating in the process of decision-making. This is why theories around Article 12 of the CRC in children’s rights scholarship have been conceptualised as participation, even though the convention itself does not mention participation (CRC Committee’s General Comment No. 12, 2009, para. 3). The degree of a child’s participation (proportion of involvement) differs according to the child’s age and maturity (CRC, Art 12) and is dependent on several factors, such as the attitudes and behaviours of adults, among others (Mårtenson & Fägerskiöld, 2008). Several scholars have offered models conceptualising children’s participation through levels of their involvement (Hart, 1992; Lundy, 2007; Shier, 2001). In 1992, Hart wrote in his famous essay that participation “is the means by which a democracy is built and it is a standard against which democracies should be measured” (Hart, 1992, p. 5). He offered a diagram called “The Ladder of Participation” as a beginning typology for thinking about children’s participation in different projects within the public domain (school, community groups, other organisations or informal groups). On this ladder, he visualised 8 levels of child participation: (1) manipulation, (2) decoration, (3) tokenism, (4) assigned but informed, (5) consulted and informed, (6) adult-initiated, shared decisions with children, (7) child-initiated and directed, and (8) child-initiated, shared decisions with adults. Inspired by Hart’s ladder, Shier (2001) elaborated a model omitting the lowest three levels of the ladder (manipulation, decoration and tokenism) that are labelled non-participation. It is noteworthy that Hart and Shier considered the collective involvement of children when envisaging their models. However, the same levels of participation are present when involving individual children in making decisions about their lives. In 2007, Lundy elaborated on children’s participation in the school environment and offered a visual model of Article 12 of the CRC identifying four main elements of child participation: space, voice, audience and influence.

All of these models are complementary and do not contradict one another. This article applies Shier’s participation model as a theoretical basis for data analysis. Shier’s model envisages five levels of children’s participation:

  1. (1)

    children are listened to;

  2. (2)

    children are supported in expressing their views;

  3. (3)

    children’s views are taken into account;

  4. (4)

    children are involved in decision-making processes; and.

  5. (5)

    children share power and responsibility for decision-making.

Within each level, Shier differentiates three stages: openings (adults are ready to), opportunities (adults take concrete action) and obligations (policy requirements). This paper does not specifically refer to these stages in the data analysis, as the behaviour and actions of adults are the very core of this article, and these are analysed in the framework of relationality. Policy requirements are not within the scope of this study.

This paper uses Shier’s model as an analytical tool, as it facilitates a deconstruction of the participation process into procedural fractions or stages, reflecting the status of a child’s involvement in the decision-making process. The findings of the study are organised and discussed within this framework.

This paper also aims to add a dimension that is missing in Shier’s model, as well as in the other models considered above – the conceptualisation of a child’s participation as a process that the child shares with his/her parent (or other legal guardian). In real-life situations, especially in healthcare, a child is usually represented by a parent (Paron, 2018). This means that the child and the parent participate in decision-making together vis-à-vis a professional, be it a doctor, social worker or other specialist. Applying Article 12 of the CRC (as conceptualised in the participation models) is not a straightforward process for a healthcare specialist. In a healthcare context, the patient “consists” of two individuals – the child and the parent. This means that both the child and the parent must be listened to, and must be supported in expressing their views. It also means that even if the doctor is trained and willing to support the participation of the child in the decision-making process, the parent’s behaviour may hinder this or render it impossible.

Therefore, a more nuanced conceptualisation of the participation process is needed. Moreover, it is necessary to move beyond participation, as the concept itself may hinder a broader understanding of the involvement of children, limiting it to a procedural issue. Therefore, this paper refers to the process of exercising autonomy as autonomy-making, and aims to offer a more nuanced way of understanding this concept by looking at a child’s autonomy through the lens of relational sociology. The aim of relational sociology is to “understand and explain the infinite abilities of the human being to generate relations” (Donati, 2015, p. 88), where social relations are a reality and produce social change. In Donati’s words, “society is made by individuals but is not made of individuals” (Donati, 2015, p. 90). Individuals produce particular effects on one another through their relational connections and joint actions, and could therefore be thought of as ‘interactants’, not just as actors (Burkitt, 2016). When relating to one another, those interactants do not have a single valued position or status, like being clearly dominant or dominated, being active or passive. In Burkitt’s words “in interrelation, interdependence and interactions with others, interactants are always active and passive, powerful and yet vulnerable to various degrees, acting on others and being acted on by those others” (Burkitt, 2016, p. 336). A relational sociological approach is valuable as it enables us to get closer to the unique and individual social experiences of people than universal theories can (Dépelteau, 2015). As Dépelteau argues, there is no such thing as a universal, average individual, and this is why scientific knowledge is never definitive.

This article explores the relations between three social actors – the child, the parent and the doctor – who create child-patient autonomy with their interdependent actions. All of them do what they do only in reaction to what each of them says or does, and because of what kinds of people they are (Dépelteau, 2015). This means that the social relation between “interactants” is shaped by their “identities and interests, the cultural institutions involved, their networked culture, their interchanges, their strategies, conflicts, struggle for recognition, their reputation management, balance of power, etc.” (Prandini, 2015, p. 13). Therefore, child-patient autonomy can never be the same, it is constantly changing and is uniquely shaped by the participants of the healthcare relationship and their personal characteristics. Such an “emergent effect of reciprocal actions” forms the very essence of a social relation – “a molecule of the social world” (Donati, 2015). It is a helpful concurrence that Donati, when giving an example of the emergent effect of reciprocal actions of social actors, refers inter alia to a doctor-patient relationship. He explains that the relationship that emerges “is made of elements that come in part from the doctor and in part from the patient” (Donati, 2015, p. 95). From the perspective of this study, these elements come from a dual patient – the child and the parent.

To conclude, this paper uses a relational approach to rectify the limitations of child participation models. These models do not reflect the fact that participation is often a process that a child shares with a parent, especially in healthcare. To fill this gap, Shier’s model of child participation (2001) is bridged with relational sociology in this paper. The process of child participation in decision-making is deconstructed into stages (Shier, 2001) and each stage is explored through a relational lens by analysing the effect of reciprocal actions reiterated by social actors – the child, the parent and the doctor. This enables us to obtain a deeper understanding of how child autonomy emerges within and through social relations.

3 Methods

3.1 Participants and Procedures

The study is based on ethnographic non-participatory observations of ambulatory doctor-appointments involving 29 children and 2 young adults (13 males and 18 females) ranging in age from 2 to 19 years in two Estonian clinics. The objective of the study was to include only children in the sample; that is, individuals under 18 years of age. However, during the days of the study, two young adults (aged 18 and 19) visited the children’s clinic, where the 19-year-old visited the clinic with his mother. These young adults were included in the sample to enrich the data analysis. The study targeted clinic visits where a child visited a doctor with his or her parent(s) focusing on the child-parent-doctor triadic relationship. However, four young patients, one 15-year-old, two 17-year-olds and one 18-year-old, visited the doctor alone. They were included in the study as these appointments serve as a valuable reflection point in the data analysis.

Two clinics were approached, a children’s hospital and a family medical centre, to find doctors who would agree to allow their appointments to be observed. Two paediatricians from the children’s hospital and three family doctors from the family medicine centre agreed to participate in the study. The researcher agreed with the doctors on the days the patient appointments would be observed. The patients (children and parents) that booked clinic visits for the days of the study were approached in the clinic before their appointment and asked for permission to observe their appointment.

3.2 Data Collection and Analysis

The observations of the appointments were non-participatory, and only ambulatory appointments (outpatient care) were observed. Written shorthand notes of the appointments were taken which were rewritten into thorough transcripts after each day of observations. Video- or voice recording was not used in this study as, based on previous research experience, patients would have considered it more intrusive on their privacy. The collected data was analysed thematically (Braun & Clarke, 2006) by applying deductive and inductive approaches for identifying themes. At first themes were identified on the basis of the framework of Shier’s five-level participation model, with each level constituting one theme. The process of analysis involved systematic and repeated readings of the transcripts and classifying the data into themes. Through a repetitive process of going through the transcripts, the data itself helped the author identify new subthemes, which are presented in the findings section (see Table 1).

3.3 Ethics

The study has been approved by the Ethics Committee of the National Institute for Health Development and by the legal representatives of the clinics involved. The participants were informed about the purpose of the study and the ethical rules of voluntary consent; the confidentiality of their data and anonymous data processing were explained to them before signing the consent form. No reference to personal data was made either in the notes or in the full transcripts, and the children were identified only by their gender and age. However, for the ease of reading, fictional pseudonyms are used in this article. The children’s medical data and diagnoses were not the focus of this study, and therefore such information is referred to only if it provides relevant context; for example, a child with a long history of diabetes is generally well aware of the treatment options (counting carbohydrates in food, checking blood sugar and injecting insulin).

3.4 Estonian Context

Since ratification of the CRC in 1991, Estonia has taken several steps to promote and raise awareness of children’s rights. As of today, the general principles of the CRC are transposed into Estonian law, and hearing the child as enshrined in Article 12 of the CRC is a legal rule in any proceedings involving a child, be it child protection cases or court proceedings. In practice, however, there is room for improvement with regard to the awareness of children’s rights – 75% of adults and 70% of children in Estonia have heard of children’s rights (Praxis, 2018). It is also problematic that positive attitudes towards the child’s right to be heard and participate in making decisions about her/his life do not extend to all areas of a child’s life. Although 97% of adults agree that hearing a child is as important as hearing an adult, only 61% of them agree that a child has the right to be informed about decisions regarding his/her health and the right to participate in making such decisions (Praxis, 2018). Praxis research also demonstrates that there is a need to raise awareness about the health rights of children, as knowledge about those rights is lowest among adults in comparison to some other rights that were studied within the Praxis research, such as the right to have a family and be cared for, and the right to protection by the state.

4 Findings

The right of the child to be heard and the corresponding responsibility of adults to enable the child to be heard, as provided in Article 12 of the CRC, is an overarching theme of the study. Within this normative framework, Shier’s model of participation (2001) is applied and this generated four main themes corresponding to Shier’s participation levels – (i) listening to children; (ii) supporting children in expressing their views; (iii) taking children’s views into account, and (iv) involving children in decision-making process / sharing power and responsibility with children for decision-making (see Table 1). The collected data did not enable any differentiation between being involved in decision-making and sharing power for decision-making (Shier’s levels four and five); therefore, those two levels constitute one theme in this study. Each theme describes the procedural fraction or stage of the participation process, reflecting the status of a child’s involvement in the decision-making process and contains several sub-themes induced by the data analysis (see Table 1).

Table 1 Themes
Full size table

The interpretation of the themes focuses on the triadic interaction between the child, the parent and the doctor. Each stage of participation is explored through a relational lens by analysing the effect of reciprocal actions reiterated by the social actors involved.

4.1 Listening to Children

According to Shier, this level includes the adult’s willingness and ability (training) to listen to the child with care and attention if the child takes the initiative to express his/her view. The analysis of the data facilitated the identification of three sub-themes with regard to this participation level: (i) physical space and proximity, (ii) doctor’s expression of interest towards the child/creating a relationship, and (iii) doctor’s willingness to listen.

4.1.1 Physical Space and Proximity

The importance of physical space and proximity for child participation is well demonstrated by this study. In one doctor’s office the doctor’s desk was between the doctor and the patient in such a position that the computer screen on the desk hid the face of the child from the doctor when the child leaned back on his/her chair, cutting off eye-contact between the doctor and the child, hindering direct communication. The position of the desk also functioned as a barrier between the doctor and the child. In another room, the doctor had a chair with wheels so she could easily roll closer to the child or turn the chair 180 degrees when switching between talking to the child and the parent (the child’s chair was next to the doctor’s desk, and the parent’s chair was on the other side). The position of the chairs in the doctor’s office had an impact on the seating arrangements of the children and parents: when the chairs were all side by side, then the child and the parent would sit next to each other. In some rooms there was a single chair next to the doctor’s desk and there were other chairs against the wall. In such doctor’s offices a clear pattern emerged where the child sat on the single chair next to the doctor’s desk. It seemed to be an unwritten rule. Therefore, it could be called the “patient’s chair”, which has a symbolic value referring to who is the primary subject in the room. In some cases, the doctor specifically asked the child to sit on that chair; for example, saying “Please come and sit here [gesturing at the same time towards the chair], tell me how you have been!” (doctor to a 13-year-old girl who visited the doctor with her father). With the youngest participants the seating pattern was less clear. In the case of a 5-year-old girl, the mother sat on the patient’s chair, and the girl sat on the chair against the wall, while one 4-year-old girl sat on her father’s lap on the patient’s chair.

Another essential aspect with direct impact on communication during the appointments was the use of computers. Doctors have to document information about the appointment that has medical relevance, and obviously this takes time. Only in the case of one doctor (out of five), the work was arranged such that the nurse stayed in the room the entire time and helped the doctor with documentation or with finding relevant data from the previous medical records of the patient. In all other cases there was no nurse present during the appointment, and the doctors had to find and insert the data themselves. If doctors have to insert data themselves during an appointment, then inevitably they will have less time for the patient and their attention will be constantly interrupted by the use of the computer.

For younger children, toys and other playful elements may have an essential role. In those doctor’s offices where there was a box of toys, this worked as an ice-breaker with young children; for example, when a crying 2-year-old girl entered the examination room with her mother, the doctor started to show her toys from the toy-box and the girl instantly cheered up, walked to the box and started to play.

4.1.2 Expressing Interest Towards the Child

According to Shier, within the first level of participation, listening to the child occurs “only in so far as children take it upon themselves to express a view” (Shier, 2001: 112). However, it is likely that the doctor will initiate this, as it is unlikely that a child would start a conversation with a professional without any question or introduction by that specialist. This is why expression of interest towards the child was identified as a key-element within this theme.

The study shows that doctors generally express interest towards the child. All of the doctors involved in the study made some introductory remarks or asked general questions to initiate a conversation with the child. As the observations were carried out in August, which is during the long school holiday, it was most common that the doctors asked about the holidays at the beginning of the appointment: “How has your summer holiday been?; “What have you done during your summer holiday?”; “Are you looking forward to going to school again?”; “Which grade will you start this school year?”. In the case of younger children, some doctors showed interest in something the child had, like asking about a toy in the child’s hand (“Did the rabbit also come to the doctor?”) or complimenting the child’s dress or nail colour (“What a beautiful colour, did your mum help you?”). A clear distinction could be drawn from the observations that the doctors tended to ask more about the personal lives of the child if the child was a regular patient of that particular doctor. They asked about events that they knew were happening in the child’s life, such as trips or sports competitions or graduating from school or kindergarten. This created an informal and friendly atmosphere for the child. In a previous qualitative study (Paron, 2018), children reported that they like it when doctors take a genuine interest in their lives.

4.1.3 Doctors’ Willingness to Listen

This study demonstrates that doctors are willing to listen to the children when they share their thoughts and concerns. At no time during any appointment did any doctor’s behaviour reflect reluctance to listen to the child. Moreover, on several occasions, the doctors showed their willingness to listen to the child even though the parent’s reaction tended to suppress the child’s self-expression. An illustrative example of this is an interaction between a doctor and a 7year-old boy where the doctor asked the mother: “Is he looking forward to going to school?” The mother replied: “Yes, he is very excited, he already liked pre-school very much.” The boy to his mother: “Who told you that?” The doctor to the boy: “You did not like pre-school?” The mother to her son, before he was able to answer, in a cheerful tone: “Oh, what are you talking about, don’t make things up!” The doctor to the boy: “But what was it that you did not like there?”. The boy was silent. The doctor: “Didn’t you like the teachers or you did not like to go there?” The boy remained silent. The doctor: “What was it exactly that you did not like?” The boy: “I don’t know”. The doctor in a reflective manner: “I see, you don’t know what you did not like. Maybe you then liked it a little too?”

4.2 Supporting Children in Expressing Their Views

At this level, according to Shier, adult specialists must take positive action to support and enable children to express their views, which may require a creative approach or use of age-appropriate communication techniques. The data collected in this study induced three sub-themes at this participation level: (i) ways of communication, including age-appropriate techniques (verbal and non-verbal); (ii) encouragement/discouragement by a parent; and (iii) encouragement/discouragement by a doctor.

4.2.1 Ways of Communication

One of the most challenging aspects of communication, as revealed by the study, is the fact that the “patient” consists of two individuals (dual patient). This means that the doctor has to constantly choose which one to address – the child or the parent or both of them. First, such duality was revealed from a linguistic aspect. Two linguistic patterns emerged from the study: using plural forms of address or switching between addressing the child and the parent. Some doctors addressed the child and parent in the plural formFootnote 1: “Have you been ill this summer?”; “How have you been this summer?”. In the Estonian language, this means that the doctor asked both the child and the parent whether they had been ill or how they had been, even though it was evident that the question was only about the child. Some doctors clearly distinguished whether they addressed the child or the parent, either using the child’s name: “What do you think about it, Martin?” or giving a clear indication about the switch: “Now I will ask your mother” (doctor to a 15-year-old girl); “I will talk to your mummy for a moment” (doctor to a 4-year-old girl). Only one doctor in five displayed an evident practice of making it clear whether she was talking to the child or the parent.

The study reveals that doctors adapt their communication according to the child’s age. With younger children it was common for the doctors to bend or squat down to be on the same level with the child. One doctor asked a 5-year-old girl about her joint pain, bent down towards the child to show her a pain scale with face images, and asked the child to show how she felt about her pain. The doctors also used creative communication methods. One 2-year-old girl had to be measured but was reluctant to allow this to be done. The doctor said: “Let’s measure your mummy first”, and the doctor and the mother both squatted down to the measuring instrument and the doctor measured the mother. The child looked on with interest and became eager to let herself be measured. In order to check the lymph nodes of the child, the doctor said “You have been such a good girl, may I caress your head?” while she at the same time slid her hands from the child’s head to her neck.

4.2.2 Encouragement/discouragement of the Child by the Parent

The study demonstrates that there are considerable differences in parent behaviour with regard to allowing and encouraging their child’s involvement in communication and discussions. According to the study, some parents discussed with their children how to communicate with the doctor before coming to the clinic, and guided their children on how to communicate with the doctor.

Mother of a 12-year-old boy (addressing the doctor): “I’ll talk myself, although we agreed that Peter would talk, but he won’t anyway”.

Mother of a 15-year-old girl (addressing the girl): “Do not rush when talking!”

Father of a 15-year-old girl (addressing the girl): “You must explain yourself how it feels exactly” (the girl had been very silent during the appointment).

Father of a 6-year-old boy (addressing the doctor): “Ralf has a concern he wants to talk about”.

Father of a 4-year-old girl (addressing the girl when waiting for the appointment in the corridor): “Please tell the doctor everything, how much it hurts and how it feels exactly”.

Although the study demonstrated the positive practices of some parents, it also revealed that some parents did not encourage their child’s involvement in discussions, and some even hindered it by doing most of the talking themselves or not letting their child answer the doctor’s questions, replying themselves to the questions addressed to their children.

4.2.3 Encouragement/discouragement of the Child by the Doctor

Under Shier’s model, a specialist’s positive action is the key to a child’s participation. This study demonstrated that doctors generally encourage children to be involved. This may happen in the opening of the discussion: “Please tell me what brings you here today” (doctor to a 17-year-old boy); “I see your GP’s explanation in your health record, but please tell me in your own words what’s concerning you” (doctor to a 15-year-old girl); “We have not met for a long time, please tell me how you fell ill” (doctor to a 15-year-old girl). In the case of children who were shy or untalkative, the doctors often tried to involve them by personally addressing them: “What is your own opinion, you are already a ‘big child’Footnote 2?” (doctor to a 14-year-old boy whose mother had mostly answered the doctor’s questions); “Laura, how does this pain feel exactly?” (doctor to a 9-year-old girl who had been silent when her mother explained about her daughter’s joint pain); “Is there anything else you want to tell me?” (doctor to a 13-year-old boy at the end of the appointment).

However, this study also revealed some practices that do not support children in expressing their views. For example, some doctors asked about things regarding the child from the parent and not the child, even if the child was clearly able to answer: “How tall is he?” (doctor asking the parent of a 14-year-old); “Has he eaten this morning?” (doctor asking the parent of a 14-year-old). Another example of a discouraging practice was asking closed questions which can be answered either ‘yes’ or ‘no’ (“Do you feel well?”), and therefore do not encourage further contributions. Although such closed questions may be fully adequate in some situations, such as to ascertain pain (“Does it hurt here?), they do not invite the child to contribute further as efficiently as open questions such as the previously noted, “Please tell me in your own words what’s concerning you”. Some doctors also asked about something in a negative form; for example, “Doesn’t it hurt here?” which is common in spoken language but should be avoided with child-patients, as it can easily lead to an affirmative answer by the child such as “No, it does not”.

4.3 Taking Children’s Views into Account

At the third level of Shier’s participation model, children’s views are taken into account ‘according to their age and maturity’ (wording of Article 12 of the CRC). This means that the proportion of weight given to a child’s opinion will depend on the child’s age and maturity. The more the child herself/himself knows, has experienced and understands, the greater the weight that must be given to his/her opinion (CRC Committee, General Comment No 12, para. 84). Within this level, it is also essential that the child be given explanations and feedback if it is not possible to follow his/her wishes. What is also important when exploring this level of participation is that in practice it is complicated to distinguish between situations where the child’s view is taken into account (Shier’s level three) and situations where the child participates in decision-making (Shier’s levels four and five). The fact that a child’s opinion is considered may already reflect the fact that the child is participating in decision-making. Shier sees the distinction in that at the lower levels (1–3) children provide their input to aid the decision-making, but at level four children are directly involved at the point where the decisions are made (Shier, 2001). In real-life situations, as this study showed, the difference may not be so clear. For the purposes of this study, decision-making about treatment and the further action plan is analysed at levels four and five, and discussions relating to procedural issues such as taking samples (blood, urine) or what is the best time for the next appointment are explored at level three.

The collected data made it possible to identify two sub-themes with regard to this participation level: (i) children’s negotiations with adults about what they want; and (ii) who decides whether to take the child’s opinion into account.

4.3.1 Children’s Negotiations with Adults

The study revealed that children are not just passive recipients of information and instructions in a healthcare relationship. According to this study, children often disagree or are reluctant to do what is proposed during doctor’s appointments, as illustrated by the following examples:

  • A 13-year-old boy with his mother. The doctor to the boy: “We have to take your blood sample today.” The boy: “Is it possible to take blood from my fingertip?”. The doctor: “We cannot get as much as is needed from there”. The mother to his son: “You aren’t the one who commands here”. The boy: “I’m not commanding, I’m just asking”. The doctor (looking at the medical records): “Actually we can do it next time we meet”. The mother: “Let’s do it today!” The boy sighed and placed his head on his knees.

  • A 4-year-old boy (with his mother and an older brother) visiting his GP for a regular check-up. The doctor wanted to measure the boy’s blood pressure and took out the instrument. The boy (while almost crying): “I don’t want it”. The doctor: “Would you like to measure it with another instrument that we use for younger children?” (the doctor started to take the instrument out of a box). The boy: “No, I don’t”. The mother bent down to the child and said: “You see, your brother also did it and it did not hurt at all”. The boy looked at the table and pointed to the instrument that was used for measuring the blood pressure of his older brother. The doctor started to measure and the boy agreed to it.

  • A 14-year-old girl (with special educational needs) visiting the doctor with her mother. The doctor: “We have to take a blood sample today”. The girl: “I’ll run away”. The doctor: “We have such a good nurse here; you will not feel anything”. The girl started to move towards the door, with her mother and the doctor standing next to her. The mother to the girl: “What are you doing, don’t start!”. The doctor grabbed a woollen toy from the bed that had been knitted by another child-patient and that the girl had been admiring earlier and said: “Here, do you want to have it”. The girl took the toy, smiled and agreed to go to the nurse.

These examples demonstrate that the main strategies used by the children to exercise their autonomy in the case of disagreement about what has to be done is either negotiation (the first example) or resistance (the second and third examples). However, all of the cases of resistance or negotiation initiated by the children ended with parental decision-making in this study. Therefore, as far as the internal dynamics of the dual patient are concerned, the parent was the dominating power. It was the parent who made the ultimate decision and convinced the child. In the cases where medical intervention was necessary in the doctor’s view, the doctor was an ally to the parent in convincing the child.

4.3.2 Who Decides Whether the Child’s Opinion is Taken into Account?

The above reflected the internal dynamics of the dual patient. However, it may also be that a doctor’s view clashes with the parent’s view as to what is best for the child or whether the child’s opinion should be taken into account. This study demonstrated that in situations where the doctors asked about procedural issues (a new appointment, taking samples), it was most often the parent who decided whether to take the child’s opinion into account, not the doctor.

  • A 12-year-old boy and his mother were discussing a new appointment with the doctor. The doctor offered a date for a new appointment, and the mother said: “Let’s put it in the calendar”. The boy to his mother: “I have a training session on Monday”, and the mother replied: “Then you’ll just have to skip it.”

  • A 16-year-old boy and his mother were discussing with the doctor which samples needed to be taken. The doctor to the boy: “I will take your blood sample today”, the boy: “I don’t want to do that at all”. The mother to the boy (in a positive tone): “You will survive it!”. The doctor to the boy (in a comforting tone): “Do you remember how often we had to take blood when you were younger?”

The above examples demonstrate that the doctors accepted parental authority as a decisive factor, and were reluctant to intervene in such situations. It may also mean that without the parents’ intervention the doctors would have been ready to take the child’s view into account.

4.4 Involving Children in Decision-making Processes/sharing Power and Responsibility for Decision-making

Compared to level 3 (taking children’s views into account), where the child’s views form an input to the decision-making process, according to Shier (2001), at levels four and five the child participates actively in the decision-making process. Levels four and five were explored together in this study, as the collected data did not allow for one to be distinguished from the other. Three sub-themes were identified at this participation level: (i) presence of the decision-making phase; (ii) illusory involvement of the child in decision-making; and (iii) decision-making when the child visits the doctor alone.

4.4.1 Presence of the Decision-making Phase

This study demonstrated that the decision-making phase is least represented in the children’s clinical visits. Decision-making as such was hardly ever clearly addressed during the clinical visits. The routine practices of only one doctor clearly reflected that the doctor addresses decision-making with children and involves children in decision-making:

  • Doctor addressing a 15-year-old girl (who was with her mother): “Now we’ll have to discuss what to do. I don’t see any inflammation, but of course, I understand that you have pain. … It is a pain syndrome and it is related to growing. … You have to choose the right sport, you can’t do any sport you like. You also need physiotherapy”. A discussion followed as to whether physiotherapy was available where the family lives. The doctor to the girl: “Let’s also discuss what sport would suit you. Athletics surely is not good for you (the girl had said earlier that she does athletics), do you like swimming?” The girl: “I did swimming, but I got an allergy from it.” The doctor: “What about some group exercise, Pilates would be good for you.” (discussion about different sports followed). The doctor clearly wrapped up the conversation with the girl: “Even if we were to take those samples from you, nobody would find a disease that could be treated with pills. A lot depends on you now. I’ll write a prescription for support insoles for you. Taking too many pain-killers is definitely not good. You can use cremes, like Icepower.”

Even though the visit ended without a diagnosis requiring treatment with medicine, the example demonstrate that the doctor addressed the girl as the primary subject who had the final say about the next steps (“A lot depends on you now”). The doctor offered several options to the girl that helped the girl choose the most suitable solution for her. It is also worth noting that the doctor made a clear opening statement (“Now we’ll have to discuss what to do”) that enabled the child-patient to understand that she was the one with whom decisions about further steps would be made.

4.4.2 Illusory Involvement in Decision-making

The findings reveal that involving children in decision-making may sometimes be expressed verbally by adults without the readiness to actually give weight to the child’s view. In one case, a child was given the impression that he was involved in decision-making and that his opinion counted, when actually it was the parent who decided the issue:

  • A 7-year-old boy was making a regular visit to his GP with his father. At that age, children are given a DTap-IPV vaccination. The doctor asked the boy whether he knew what vaccines were and explained how they functioned. After the explanation the doctor asked the boy: “If you could choose between one little injection instead of many if you were to get this serious disease and have to go to hospital, what would you choose?” The boy was silent. The father intervened: “In a nutshell, you have to choose between either getting a nasty disease or you have this little injection and you won’t get the disease.” The boy did not say anything. The doctor said to the boy: “You don’t have to decide right now, you can discuss it with your dad”. The boy left the room with his father saying: “I don’t want this”. They discussed it further in the corridor and finally the father said “We will do it”, and they walked into the nurse’s room with the boy crying.

In the above example both the doctor and the father told the boy that it was his choice whether he agreed to have the vaccination or risked getting a nasty disease. However, it was only the adults’ way of trying to convince the boy to have the vaccination. They used the rhetoric of choice presuming that after the explanations they gave, the boy would choose vaccination, but he did not. This was not an acceptable choice in the father’s eyes, and therefore he used his parental power and made the decision himself. This may be justified in the case of a 7-year-old child. Nevertheless, it is important that the child understands whether he has a choice or not.

4.4.3 Decision-making when the Child Visits the Doctor Alone

During this study, three children visited the doctor alone (two 17-year-old girls and one 15-year-old girl). In two of these cases, the child had a chronic disease (one diabetes and the other arthritis) and knew the doctor whom they visited regularly. In the third case, it was the first visit of a 17-year-old girl to the doctor.

The study revealed that if a child visits the doctor alone, the doctor clearly involves the child in the decision-making phase and accepts the idea that the child is the decision-maker:

  • Doctor discussing a treatment scheme with a 17-year-old girl with diabetes. The doctor: “Is the treatment scheme working?”. The girl: “It is, rather. When I was in summer camp then once my blood sugar went up and did not come down anymore.” The doctor: “If you used a sensor, then you could get it down easily. I’m wondering whether the insulin dose is enough at the moment? Now that you will start school again, there will be more sitting.” The girl: “Actually not, I’ll be doing an apprenticeship right away and there will only be a little sitting involved.” The doctor: “Maybe we should still raise the base dose?” The girl: “I guess we could”. The doctor took the instrument from the girl and entered the exact doses.

  • Doctor discussing a treatment plan with a 15-year-old girl with arthritis. The doctor: “What do you think, shall we start treatment now or shall we wait until it bothers you?” The girl responded: “It would be better to start with treatment now, rather than waiting until it gets really bad.”

The study showed that the instances where a child visited a doctor alone were the only occasions where the child clearly shared power and responsibility for decision-making with an adult specialist (level 5 in Shier’s model). It must be kept in mind, however, that it may have been “forced” involvement, as there was no other option since the parent as a possible interactant was missing. However, a previous study shows (Paron, 2018) that in cases where a child visits a doctor alone, one of the strategies used by doctors is to postpone decision-making or contact the parent (e.g. via telephone) to discuss treatment. Therefore, it may have been a well-considered choice by the doctors to share decision-making with the child only. It is also important that in both examples the doctor knew the child which made assessment of the child’s maturity easier.

5 Discussion

5.1 Child-patient Autonomy is a Relational Phenomenon

This study explored how a child-patient autonomy is exercised in a child-parent-doctor triadic relationship, and how communication among all parties is affected by the fact that the patient is represented by two individuals – the child and the parent (dual patient). This was done by deconstructing the participation process into procedural fractions or stages, reflecting the status of the child’s involvement in the decision-making process (Shier’s levels of participation, 2001). All levels were analysed within the framework of a relational sociological approach (Burkitt, 2016; Dépelteau, 2015; Donati, 2015; Prandini, 2015). A healthcare relationship (relation) and the child-patient autonomy therein is generated by three “interactants” (Burkitt, 2016) – the child, the parent and the doctor. They produce particular effects on one another through their relational connections (Burkitt, 2016). Therefore, in accordance with Donati (2015), child-patient autonomy consists of elements partly from the doctor, partly from the parent and partly from the child. They all generate a triadic relationship that constitutes the essence of the child-patient autonomy, making the relationship at the same time both a process and an outcome of that process (Donati, 2015). This study demonstrated that patient autonomy is not clearly attributed to either the child or the parent by the doctor, but is shared between them, and therefore child-patient autonomy is a relational phenomenon. However, looking at the internal dynamics of the dual patient, the parent is the dominating power. It is the parent who makes the ultimate decisions in the case of child-parent disagreement, and doctors are reluctant to intervene in such situations.

5.2 The Triadic Relationality should be Reflected in Children’s Rights-based Participation Models

This study demonstrated that the child-patient autonomy functions in a unique triadic relationship – three individuals meet in a healthcare setting: a child who has a health issue, his/her parent who exercises parental authority, and a doctor who exercises professional authority. The patient is represented by two individuals (dual patient), and therefore relationality functions on three axes: child-doctor, child-parent, and parent-doctor. This makes the application of Article12 of the CRC – allowing the child to be heard and to participate in decision-making – a complex relational process. Moreover, none of the established participation models (Hart, 1992; Lundy, 2007; Shier, 2001) reflects the fact that a child’s participation is often a process that the child shares with his/her parent (or other legal guardian). The participation models remain passive by referring to what has to be done; they do not engage the participants of the relationship as social actors. This has direct practical implications, as health practitioners are lacking guidance on how to solve this complexity (Paron, 2018).

This paper offers a relational approach to the established participation models that could help practitioners and families to understand their roles. A practical question that is relevant here is who does what? In the findings section, it is explored who does what in light of the levels of child participation in the triadic relational connections and joint actions of the interactants. Bridging this approach with the normative framework of child participation should lead to the question of who is obliged to do what?

Looking at the doctor-patient relationship from the medical professional perspective, the doctor bears responsibility (derived from medical ethics and professionalism) towards the patient. The patient, in this study, consists of two individuals, the child and the parent (dual patient). This means that the doctor bears a professional duty towards both of them. When adjusting Shier’s participation model to this reality of a healthcare relationship, the responsibilities within each level should be rephrased respectively, identifying the doctor as the primary duty bearer (see Table 2). However, when looking at the doctor-patient relationship as one between the child and the adults, using the normative guidance of CRC principles, the adults should be identified as duty bearers towards the child (see Table 2).

Table 2 Patient-orientated approach compared to child-orientated approach in a triadic healthcare relationship
Full size table

Table 2 illustrates the fact that the doctor and the parent have indeed multiple roles within a healthcare relationship. It is not the aim of the above comparison to prefer one approach over the other, as both are valid from their starting point. The aim is to acknowledge these multiple roles and relational axes within a triadic healthcare relationship, and thereby enable to better conceptualise this unique relationship. Above all, healthcare professionals and parents should be made aware of their complex roles. They have common duties and aims and must therefore inevitably cooperate to improve the involvement of children in the process of making decisions about their health.

5.3 Child-patient Autonomy Should not be Limited to Participation Only

An essential finding of the study is that a decision-making phase of the participation process (as envisaged by Shier) is hardly present in the healthcare practice observed. It was rare for the doctors to clearly talk about decision-making or use words that would lead the children to an understanding that they were involved in decision-making. This may indicate the adults’ limited understanding of the involvement of children, but it may also be related to the established conceptualisations of children’s rights under Article 12 of the CRC as participation (Committee, 2009, para. 3). Within this conceptualisation, children are usually seen as participating in decision-making but not as decision-makers. However, under the CRC principles, children’s involvement should not only mean a technical/procedural opportunity to be involved and give input. Accepting a child as an autonomous human being, a subject with their own rights, requires adults to involve children in decision-making in such a way that their wishes and opinions are honoured as much as possible, taking into account their age and maturity. Moreover, at a certain point, when the child’s maturity is comparable to that of an adult, the child’s opinion becomes paramount in decision-making (Lundy et al., 2019); that is, the child should become the decision-maker. Depending on the situation, on the child’s age and the legal context, this may mean that children are decision-makers alone or together with their parent(s).

5.4 The Parent is the Dominating Interactant in the Triadic Relationship

The most valuable finding of this study is that the parents, their behaviour and parenting styles impact the child-patient’s autonomy-making. This accords with findings from previous studies (Coyne & Gallagher, 2011; Mårtenson & Fägerskiöld, 2008). As this study demonstrates, some parents clearly encourage their children’s involvement in communication and decision-making from an early age and some do not. This may either be intentional, related to the parents’ attitudes, values and established parenting style, or unintentional, being the result of inter alia a gap in knowledge about child rearing and education. The study also demonstrates that in negotiations about what has to be done, a parent’s decision is final and may overrule the doctor’s position. This concerned procedural issues, as there were no disagreements about treatment in this study. Research by Stivers and Timmermans (2020), and Wang and Liu (2021) about parental resistance to treatment demonstrates that in doctor-parent negotiations about treatment, the doctors prevail in most cases. In the context of this study, it is important that the parents’ awareness and attitudes played as significant a role in enabling child participation as those of the doctors. Moreover, this means that parents hold the key to allowing their children’s meaningful involvement in healthcare discussions and decision-making.

5.5 Practice-orientated Value of the Study

This study has two kinds of practical implications for healthcare policymaking and practice: (i) educational, and (ii) technical/procedural.

Educational implications. The study demonstrates that healthcare professionals and parents need awareness-raising and training on how to encourage the involvement of children in decision-making and support their autonomy. First, healthcare professionals and parents should be made aware of their complex roles in the triadic relationship; Table 2 presented in the article may enhance their understanding of this. Parents and doctors need to cooperate in fulfilling their common duties towards the child in encouraging and supporting the child’s autonomy-making. Moreover, as presented in this study, healthcare professionals and parents need training relating to the decision-making phase within a healthcare relationship and how to allow children to practice decision-making. Without opportunities to practice decision-making in a safe and supportive environment, children cannot become rational decision-makers by their 18th birthday. There are several ways to raise awareness of these matters. One effective way is to distribute educational leaflets in the waiting rooms of clinics. This study also indicated that where there is regular contact between a doctor and a child, visiting the doctor alone may be one effective way of educating children about autonomous decision-making and taking responsibility.

Technical/procedural implications. Encouraging the involvement of children starts with creating a safe space for children in clinics and thinking through all the aspects of the child-patient’s journey in the clinic. First, room design itself may have essential effects on children – where they can sit, whether they can sit next to their parent(s), whether the allocation of furniture contributes to direct contact between the doctor and the child or hinders it, are there toys for younger children, etc. Second, clinics should have routines in place with regard to the use of computers during a visit, as this affects whether and how attention is given to the child. Third, health institutions could have manuals/guidelines about child-friendly and age-appropriate ways of communication – how to address children, which questions can be asked and which should not be, what are age-appropriate choices, how to involve younger children who may not be able to express themselves verbally and, above all, how to support the child-patient autonomy.

This study is not without its limitations. It is an exploratory research on child-patient autonomy in healthcare. The doctors who agreed to allow the observation of their appointments with patients may have had greater awareness of child-friendly healthcare in general. Further research could concentrate on the practices of a larger variety of healthcare professionals, including nurses. The study involved a limited number of participants, and does not therefore allow the author to make generalised conclusions. However, ethnographic observations of clinic visits by children from a variety of age groups and from a variety of family contexts enabled the exploration and analysis of the process of the exercise of child-patient autonomy, which allows conclusions to be drawn that are relevant for improving child-friendly healthcare policy.

6 Conclusion

This study demonstrated that child-patient autonomy is created within a triadic relational process. The autonomy-making process is shared among all three participants – the child, the parent and the doctor. Within this process, patient autonomy is not clearly attributed either to the child or the parent, but is shared between them. However, within the internal dynamics of the dual patient, the parent is the dominating interactant. It is the parent who makes the ultimate decisions in the case of child-parent disagreement. In order to encourage the involvement of children in decision-making, as the CRC requires, it is important that adult participants to the healthcare relationship understand and acknowledge their complex roles and common responsibilities towards the child. The findings of the study also illustrate that autonomy is not something that children either possess or not. Instead, patient autonomy is acquired through practice and its degree grows gradually as the child’s capacities develop.