Children are gradually attaining recognition as service users and their involvement in service development has been advanced in recent years. This study draws on empirical research in social and health-care services designed for children and families. The purpose of this paper is to analyse how professionals understand children’s involvement as experts by experience. The focus is on professionals’ views and intergenerational relations.
The research data comprise 25 individual and 10 group interviews with managers and professionals working in social and health-care services in one Finnish province. The data were analysed using qualitative thematic analysis.
The professionals recognised the value of children’s service user involvement. However, they concentrated more on the challenges than the possibilities it presents. Health-care professionals emphasised parental needs and children’s vulnerability. In turn, the professionals from social services and child welfare non-governmental organisations perceived children as partners, although with reservations, as they discussed ethical issues widely and foregrounded the responsibilities of adults in protecting children. In general, the professionals in both domains saw themselves as having ethical responsibility to support children’s service user involvement while at the same time setting limits to it.
This study confirmed the importance of taking intergenerational relations into account when developing children’s service user involvement. The results indicate that professionals also need to reflect on the ethical challenges with children themselves as, largely owing to the generational position of children as minors, they rarely perceive them as partners in ethical reflection.
Kiili, J., Itäpuisto, M., Moilanen, J., Svenlin, A.-R. and Malinen, K.E. (2021), "Professionals’ views on children’s service user involvement", Journal of Children's Services, Vol. 16 No. 2, pp. 145-158. https://doi.org/10.1108/JCS-10-2020-0069
Emerald Publishing Limited
Copyright © 2021, Johanna Kiili, Maritta Itäpuisto, Johanna Moilanen, Anu-Riina Svenlin and Kaisa Eveliina Malinen.
Published by Emerald Publishing Limited. This article is published under the Creative Commons Attribution (CC BY 4.0) licence. Anyone may reproduce, distribute, translate and create derivative works of this article (for both commercial and non-commercial purposes), subject to full attribution to the original publication and authors. The full terms of this licence may be seen at http://creativecommons.org/licences/by/4.0/legalcode
Children are one of the main user groups of social and health-care services, which are as important for their well-being as for those caring for them. In many European countries, Finland included, growing interest is being shown in more participatory forms of service provision (Kierkegaard, 2020; Meriluoto, 2018; Toikko, 2016), also in the case of children. Children’s involvement in service development, including collective peer support and policy lobbying, has been advanced by a number of child welfare non-governmental organisation (NGOs) and governmental and public sector actors (Larkins et al., 2014; Lundy et al., 2011; Pösö, 2018; Tisdall, 2017). Pösö (2018, 112) states that in child protection service production the input of children, considered as experts by experience, is increasingly being recognised in developing services and providing professionals, policymakers, politicians and other stakeholders with relevant knowledge. Pösö argues that alongside formal and research-based knowledge we need experience-based knowledge that only service users can provide.
This paper draws on empirical research in social and health-care services designed for children and families. The study is part of the VerKo-research project, aimed at studying and developing service user involvement in child and family social and health-care services. In the present study, thematic analysis was applied to data from interviews with social and health-care professionals and managers working in the public sector and in non-profit organisations (NGOs) in one province in Finland. The purpose was to analyse how professionals understand children’s involvement as experts by experience. The focus is on professionals’ views and on intergenerational relations. In accordance with the United Nations Convention on the Rights of the Child (United Nations, 1989), children are defined as people under 18 years of age.
Service user involvement, children and knowledge
Expert by experience is a contested and multidimensional concept, as are other related concepts such as service user involvement, co-production of services and lay participation. In this paper, the concepts “expert by experience” and “service user involvement” are used with reference to children and young people who are or have been clients of social and health-care services and who represent individuals or groups who share common experiences of social and health issues (Barker and Maquire, 2017, 598). These children and young people draw on their experience-based knowledge to inform, lobby and influence decision and policymakers, politicians, service providers and/or other service users. The concepts also refer to moments when children provide knowledge beyond their immediate service user experiences (Pösö, 2018, 112–113).
Here, children’s service user involvement refers to a form of collective participation involving children (Seim and Slettebø, 2011; Lundy, 2018; Raby, 2014) in which groups of children produce experience-based knowledge and seek changes in practices or policies that affect them (Larkins et al., 2014). Collective participation is about implementing the UNCRC and specifically conceptualising Article 12 which confirms the right of children to have a say in all matters concerning them, as well as other key rights such as freedom of expression (Article 13), freedom of association (Article 15), protection of privacy (Article 16) and access to information (Article 17) (United Nations, 1989). The UNCRC has inspired numerous researchers in their efforts to develop models for participation. One widely used model on children’s participation is developed by Lundy (2007; Lundy et al., 2011) (Kiili and Moilanen, 2019; Bourke and MacDonald, 2018; Davies et al., 2019). The model has four interrelated elements: Space (opportunity to express views), Voice (facilitation in expressing views), Audience (views must be listened to) and Influence (views must be acted upon) (Lundy, et al., 2011, 717). Jackson et al. (2020, 9) have used the model in their analysis of the collective participation of young people in care. The authors emphasise the need for further developing communication structures with young people if they are to experience participation as meaningful.
Research has shown that children’s collective participation needs multiple resources such as time and money (Larkins et al., 2014), spaces and opportunities for inter- and intra-generational dialogue (Lundy et al., 2011; Raby, 2014) and cultures that respect children, along with their knowledge and rights, i.e. children as citizens (Kiili and Larkins, 2018; Tisdall, 2017). While models, structures and resources for children’s participation have been developed, it has also been criticised as tokenistic, that is, as having limited impact on decision-making and applying only to some children, and hence not representative. While some initiatives (such as voice groups, school councils, etc.) have been taken to embed democratic participatory mechanisms in institutional structures in children’s lives, these mechanisms have been limited, formal and often used for educational purposes rather than to include children in decision-making processes (Moran-Ellis and Sünker, 2018; Lundy et al., 2011). However, Lundy (2018, 351) has expressed the valid concern that the argument of tokenism is used as an excuse not to involve children or to justify their exclusion.
Tisdall (2017, 69–71) investigated three concepts related to collective participation: vulnerability, social accountability and co-production. Vulnerability refers to the need for a wide understanding of human rights and the potential for (inter)dependency, not just in relation to children but also adults. Social accountability refers to power-holders accountability and their will to “create a robust system to address power”, co-production refers to understanding children as decision makers including a promise of more transformative change. However, while all three concepts can also be used to confirm the position of adults as gatekeepers, co-production explicitly addresses the issue of hierarchies of knowledge (ibid.). This is important, as knowledge is central to collective participation. The involvement of children as experts by experience is justified by their everyday knowledge on how given services meet or fail to meet their needs (Misca et al., 2019; Pösö, 2018).
Service user involvement can be regarded as a knowledge-sharing practice in which the key question is: what is the role of service users in the formation of knowledge (Beresford, 2007, 308)? Blume (2017, 100) asks whose lay experiences come to be constituted as “knowledge” and suggests that as experiential knowledge becomes an increasingly important form of cultural capital, the question arises of whose knowledge is valuable, and hence the possibility of competing claims. Noorani et al. (2019, 224) identify a need to acknowledge the heterogeneity in experiential knowledge, as the quality of such knowledge is rarely made explicit. Experiential knowledge can deepen over time, it can also be collective and, via repeated examination in service-user peer-groups, robust. However, whose knowledge is accepted, collected or used and by whom and how are important questions (ibid.). For example, some children are at risk of being “over-consulted” because of their visibility as experts by experience (Tisdall, 2017, 61). Therefore, it is important, as underlined by Cuevas-Parra and Tisdall (2019), to consider both knowledge and how it is used and generated in the contexts of generational difference and power.
Children, adults and intergenerational relations
Although the involvement of service users is increasingly accepted, at least as an ideal and aim, insufficient research exists on the power imbalance between different actors (Kierkegaard, 2020; Misca et al., 2019), while even more questions remain in relation to children’s involvement. In their analysis of the family justice context, Misca et al. (2019) problematise the concept expert by experience, which they see as referring to a partnership or relationship of equals. In their view, we need more research-based knowledge on the power relationships informing service user involvement and to take a critical stance towards protectionist frameworks that can suppress children’s views (also Walker and Misca, 2019, 378). This is especially important when analysing children’s participation (Tisdall, 2017).
When discussing children as experts by experience, child-adult relations as generational positioning becomes important, as it is not only a matter of professionals and service users but also of children and adults, i.e. the generational order. Children and adults are dependent on each other; adulthood and childhood are relational in many ways, including generationally. Punch (2020) argues that the existing research on and with children lacks engagement with the generational order (also Alanen and Mayall, 2001; Alanen, 2009). The concept of position refers to the social locations (of children and adults) in intergenerational relations. Generational position-taking (generationing) means that one position cannot exist without the other; there are no children without adults and vice versa (Alanen and Mayall, 2001). The generations as social structures are reproduced daily in the interactions of children and adults, also when they are service users and professionals. Devine and Cockburn (2018, 153–154) emphasise that analysing intergenerational relations and dynamics is important in discourses, expectations and understandings relating to children’s role and status, as these are usually dominated by adults.
Generation is the site both of social reproduction and social change. Empirically, it is a question of how generational positions become a reality and how they are defined and exercised in different times and cultures, including professional cultures. Punch (2020, 133) suggests that in research the concept of generational orderings has relevance, as “the generational order can take shape in a variety of manners and can also be performed in different ways”. As a social structural category, the generational order(s) is always present, if not necessarily that visibly or always the most important standpoint, but it is invariably there (Punch, 2020; Alanen and Mayall, 2001). The current literature on children’s collective participation emphasises the importance of intergenerational relations and calls for a focus on the generational difference (Cuevas-Parra and Tisdall, 2019; Kiili and Larkins 2018; Moran-Ellis and Sünker, 2018). Although our study is confined to professionals’ views, it does enable us to unpick meanings given to children’s service user involvement.
The research methodology and data
The focus of this article is on how professionals perceive the generational position of minors and how they position themselves in relation to children and the experience-based knowledge that children can furnish them with. Specifically, the research question was: How do child and family social and health-care professionals understand intergenerational relations and position children when discussing service user involvement?
The research data comprise the group and individual interviews collected between May 2019 and February 2020 in one Finnish province.
Group interviews. In total, 36 front-line professionals took part in 10 group interviews. The number of participants in each group ranged from 2 to 6. Several occupations were represented such as nurses, practical nurses, social workers, social care workers, psychologists, occupational therapists and doctors. In six (6/10) group interviews all the participants worked in the non-profit sector (social services), two (2/10) were conducted with participants working in the public health-care sector and two (2/10) with participants from inter-organisational groups representing both non-profit and public sector actors in social and health-care services.
Individual interviews. All 25 individually interviewed professionals were managers in social and health-care organisations in the public and non-profit sectors. In total, 8 (8/25) worked in the non-profit sector (social services and child welfare NGOs), 10 (10/25) in public social services and 7 (7/25) in public health-care services.
Qualitative thematic interviews were conducted by four members of the research group. Participants for the group interviews were recruited via contact persons from the organisations involved in the developmental component of project Verko-research project (service user involement and peer support in child and family services). In total, 8 group interviews were conducted in the participating organisations’ offices and two by telephone and video interview. All 10 interviews were conducted by two interviewers who asked questions in turns. The interviewees for the individual interviews were contacted directly and the interviews were conducted by telephone by a single interviewer. The interview frame for all interviews consisted of four main themes. Firstly, the terms and concepts pertaining to service user involvement were discussed (such as lay expertise, expert by experience and peer support). The second theme covered organisational and individual knowledge in service user involvement. The third and fourth themes covered leadership and management along with the opportunities and risks for the organisation, including one question concerning children (Can children act as experts by experience? What do you think of this?). Handout materials consisting of current national contributions to the topic of service user involvement in media were used to stimulate conversation. The group interviews lasted between 1 h 33 min and 1 h 59 min and the individual interviews between 37 and 90 min, with most lasting approximately 45 min. All the interviews were digitally recorded, transcribed verbatim and anonymised by a research assistant.
The study was carried out in accordance with the ethical guidelines for the responsible conduct of research issued by the Finnish Advisory Board on Research Integrity (2012). Consent was formally sought from one organisation, while the others gave their consent without requiring a specific application procedure. Each group interview began by collecting written consents from the participants. The participants in the individual interviews gave both verbal consents and scanned consents by email. No other personal data were collected. All professionals taking part in the study participated voluntarily. To ensure anonymity, the organisations and professionals taking part in the study are not named or described in detail.
The focus of the analysis was on general meaning-making by the two sets of interviewees. For the analysis, episodes in the data containing speech about children were extracted and stored in a separate file. The data was studied using qualitative thematic analysis, following the six-phase model proposed by Clarke et al. (2015, 224). The six phases are familiarisation, coding, searching for and reviewing themes, defining and naming themes and writing the article. In the preliminary phase, instances, where the interviewees spoke about children as service users and experts by experience, were extracted and coded.
In the first phase of the analysis, themes pertaining to the involvement of children as service users were inductively identified from the condensed empirical data. A close reading of the data yielded six preliminary themes:
the knowledge that children have and can provide;
peers as a resource in service user involvement;
parental needs and children as family members;
the ethical challenges and risks;
the resources professionals have and need; and
childhood as a challenging time.
In the second phase, the preliminary themes formed the basis for the final analysis. This analysis focussed on how the interviewed professionals positioned children in relation to each other and to adults and professionals, with a special interest in intergenerational relations and children’s knowledge. The analysis, thus, provides a critical perspective on childhood as a social phenomenon by engaging with the generational order and using generation as a lens through which to study child-adult relations (Warming, 2020, 4–7). Three main themes were identified and these are discussed next.
Children’s service user involvement was not widely discussed in the interviews and usually, it came up in answer to questions put by the interviewer. Specific examples of how the interviewees had worked together with children to develop services or lobby decision makers were provided in five (5/10) group interviews and six (6/25) interviews with managers. The analysis yielded three main themes. The first was labelled structural challenges in children’s service user involvement. The second, protected children, concerned the vulnerability of children and the responsibilities of professionals. The third, children’s knowledge, included discussions of the unique experience-based knowledge possessed by children.
The theme of structural challenges foregrounds the structural position of children as experts by experience. The theme of structural challenges comprised three subthemes: an overemphasis on parents and their needs, lack of resources and the problem of the representativeness of children’s voices.
In both the group and individual interviews, service user involvement was mainly discussed in relation to parents and adults in general. Apart from a few exceptions, including professionals in two child welfare NGOs and some in social services, discussions related to families primarily focussed on supporting parents’ well-being and parenthood. The subtheme of parental needs indicates that children’s well-being was perceived as highly dependent on parents and their parenting skills. This view was commonly expressed by the health-care sector participants, particularly in those services aimed at families with babies and toddlers or with teenagers. This suggests the existence of a model deeply embedded in health-care practice in which children are perceived as inseparable from the family unit (Davies et al., 2019, 3). While the health-care professionals recognised the value of children’s participation, they seemed to regard peer-support amongst parents as more important, as they extensively discussed the need to support parents in educating and raising children, citing such problems as parental exhaustion and feelings of insufficiency, partner relationship problems, etc. The interviewees also emphasised parental knowledge and expertise and how professionals can benefit from that knowledge. Improved parental well-being was automatically regarded as having a positive influence on children, who were primarily perceived as recipients of care and generationally positioned as needy and reliant (Davies et al., 2019; Fern, 2014, 17–18). Moreover, parents know what children need.
Manager 8: […] these children whose behaviour is really challenging, their parents are really the ones who are the experts by experience, not only in relation to their own children but also in relation to day-care or school.
Manager 19: […] our main aim is to support parents in their families so that they get the help and information they need.
Professionals, especially in the public sector, have heavy caseloads, and thus little time left over for developmental work, which in turn needs extra funding, another scarce resource. All the professionals argued that they not only need more time but also other resources such as education, to update their skills. As a result of the above-mentioned factors, children’s service user involvement remains a challenge for the future. Children were also identified as a demanding group because of their generational position (Devine and Cockburn, 2018): age and maturity were seen as basic criteria for participation. One social service manager stated: “Work with them is more demanding, especially with young children. I think there should be age-limit, like 12 or 13”. In another interview by the NGO manager, it was stressed that implementing children’s participation would also need stronger support from governmental actors, including binding regulations for municipalities and other service providers.
Manager 16: […] participation and service user involvement should be part of our structures, so it will need actions and binding regulations from governmental actors.
Some interviewees working in social services and NGOs perceived this as continuing future challenge for all organisations working with children, including their own. In Finland, participatory initiatives are usually governance-driven, meaning that professionals predefine the aims and structures of actions such as timetables, forums and partners (Meriluoto, 2018, 81). This was criticised by the interviewees, who emphasised that service user involvement is too often and mainly professional-led and that children should be integrated into structural development “from the outset”. This is also widely recognised as a problem in research on children’s participation (Tisdall, 2017; Moran-Ellis and Sünker, 2018).
In mentioning their own need for education to implement inclusion, four interviewees from social services also pondered the representativeness of children’s voices. They were critical of the idea that a single child can act as an expert by experience. They raised questions such as “who exactly is being heard”? And “what about the other children using these services”? They saw a model in which one child represents the voices of others as tokenistic (Kiili and Larkins, 2018; Tisdall, 2017). Instead, they talked about collective methods for gathering service user experiences from children. In one child welfare NGO, the issue of representativeness had already been considered. The interviewees emphasised that children who act as experts by experience in the NGO work with other minors and represent their voices collectively, and thus it is not just a matter of single insights or opinions. They viewed the collective use of multiple voices as generating a robust corpus of experience-based knowledge (Noorani et al., 2019).
To sum up, children’s service user involvement as a structural challenge was connected with parental needs, lack of resources and the problem of representativeness. The health-care professionals emphasised parental needs and positioned children generationally as reliant on their parents. A few professionals in the social service sector and child welfare NGOs discussed the structural challenges extensively and critically. They saw child participation as a challenge for all professionals, who would need guidance and resources to incorporate, for example, collective methods of working with children and young people into their organisational cultures.
The theme of protection, referring to the understanding that children are minors who need support and have no full responsibilities towards professionals or other clients, was present in most interviews. The emergence of this theme indicates that childhood and adolescence are understood as challenging and confrontational periods of time that require understanding from adults in general, especially from professionals in social services and health-care. This was contemplated in relation to two subthemes: ethical expertise and publicity.
The need for ethical expertise when working with children was widely perceived to include sensitivity and most importantly, the ability to “see the child behind the problems” (e.g. self-harming, substance abuse, violence) instead of predefining children on the basis of their personal histories. This was particularly stressed by the front-line professionals and managers in the child welfare NGOs and social services. In their view, professionals have a duty to support children and their development, not to burden them too much and to understand their boundaries. In this generational position, they have the right to present their views and work with professionals, but they also have the right to withdraw and to be vulnerable, unknowing and passive. This positioning emphases the duty of the professionals to protect children. However, it remained unclear in the interviews who would be responsible for drawing the line between the duty of professionals to protect children and children’s right to participate. This is a familiar dilemma for most professionals and researchers working with children, as they are often faced with contrasting and co-existing conceptualisations some of which emphasise children’s capabilities and others their vulnerabilities (Fern, 2014; Warrington and Larkins, 2019, 134). As the interviewees saw it, work with children is sensitive and it requires situational knowledge and careful reasoning. For them, children’s service user involvement is not a one-size-fits-all approach but a contextually embedded process (also Mazanderani et al., 2020).
Group-interview 7: Working with children is more delicate, more sensitive, you must be able to anticipate and be able to stop and have space to think much more, it’s not that straightforward and instant. You must follow the children’s timetable and do it in their way and as an adult, you can so often do it wrong, if you are not paying attention and being sensitive and doing it calmly, the adult role is really important.
Other challenges and risks were also discussed in the interviews. Most of the social service and health-care professionals emphasised that while peerness is a resource, it also carries elements of risk. The most common of these were fatigue and stress. Many children are struggling with various challenges in their lives and those who might feel obliged to help their peers could experience this role as a burden. Ethical expertise is, therefore, needed from professionals to support minors in setting their limits. The professionals discussed their own role in deciding what themes are suitable for children to work with, as “in the end, children’s well-being is our responsibility”. In the contexts of peer-support and service user involvement, the themes mentioned as appropriate for children to work with revealed the relative generational positions of professionals and children (Alanen and Mayall, 2001; Punch, 2020). The professionals listed several themes, including sexual abuse, sexual identity and severe mental health problems requiring professional knowledge and skills, that were not within the lay expertise provided by peers. The position of professionals as responsible actors was evident in their view that they decide what themes are appropriate for discussion with children.
This also applied to publicity. Children have the right to be protected from negative, sometimes even cruel feedback and publicity, including feedback from other professionals, social media and the wider public. In social and health-care services, the anonymity of children is essential, both in relation to publicity and as a general ethical standard. The health-care professionals, especially, discussed the challenges of service user participation. On the issue of privacy, the health-care professionals stressed that children are private persons with the right to be anonymous, including when acting as experts by experience and that it is the duty of professionals to protect their privacy. Service user involvement was seen as something that might impair children’s health if they were to be identified by peers, classmates and other locals as clients of, for example, mental health services. Further, it could have long-lasting effects on their self-esteem and identity.
Social service professionals and professionals in the child welfare NGOs, who had already worked with children as experts by experience, reported that they had advised children not to talk to the media alone or publish their personal histories in social media where they could be identified. Instead, they recommended stories containing perspectives from many children in social media posts or when children are interviewed by journalists. The professionals in the child welfare NGOs underlined that other professionals can sometimes be cruel and unprofessional when giving feedback, especially if the experiences children communicate in public are critical of them.
Group interview 7: […] sometimes it is other professionals who are not correct and respectful. There have been very sad cases over the years when other professionals have behaved inappropriately, they have forgotten that these people really open up their own lives and it is really something to respect, but sometimes they (experts by experience) experience really vicious back-stabbing, even bullying in social media.
The interviewees also emphasised that minors do not necessarily understand the limits on how much to say about their private experiences and thoughts (in relation to, e.g. substance abuse, sexual abuse, violence). Media attention can be tempting and gratifying and may lead children to say things they later regret. For example, “one young person was really telling it all, including abuse and violence”. For children, it was also considered a learning-process in which adult professionals can guide and support them: “it is so gratifying as a professional to be able to help these young people to understand privacy and personal limits”.
To sum up, children’s protection was discussed in relation to their vulnerability and the responsibilities of professionals and adults. The professionals from social services and NGOs emphasised participation as a contextually embedded process. However, the themes that clearly illustrated the generational positioning of children and adults (Punch, 2020) were the topics deemed suitable for children to work with and the anonymity of children in relation to publicity. It is important to note that protectionist frameworks can sometimes constrain children’s views. It is easy to comprehend vulnerability (and protection) as universal and natural, and therefore not think through its’ contextual and structural causes (Tisdall, 2017, 64). Lee et al. (2018, 396) emphasise intergenerational co-learning as a practice that could foster children’s participation, in their case in relation to sexting (minors sending sexualised texts and images through digital devices). In social and health-care service contexts, this could mean co-learning together on what peer-support means to children and professionals and how privacy and anonymity are understood when working with sensitive topics.
Knowledge has distinct importance in service user involvement (Meriluoto, 2018; Blume, 2017). Most interviewed professionals argued that children have valuable experience-based knowledge, thus positioning them as an important client group. However, they also expressed reservations about the quality of children’s knowledge and how it should be used. The generational position of children as knowledge providers was analysed in relation to three subthemes: unique knowledge, peerness and professional expertise.
Children have and are able to provide unique perspectives and experiences, related to their position as minors (Pösö, 2018, 112). Their experiences are something that, by definition, adults cannot have. This means hearing “authentic messages” from children, messages that are not “manipulated by adults”. The professionals in the child welfare NGOs emphasised that when delivering children’s authentic expressions, they also need to “translate” children’s messages, do “interpreting work” for them to be understood and accepted by other professionals. Because such messages need to be credible, their credibility must first be assessed by the collaborating professionals. What, then, can be considered as knowledge in child service user involvement? According to the interviewees, to be regarded as knowledge, children’s messages must be authentic, understandable and convincing. Intergenerationally, this means that while children are the owners of their messages, their collaborating professionals act as gatekeepers, evaluating the quality of these messages and whether they can be regarded as knowledge. After this, other professionals decide if and how they will use this knowledge. This confirms that while children’s collective participation is accepted as an ideal, adults can act as gatekeepers in many ways, this case in relation to knowledge formation (also Tisdall, 2017, 69–71).
Generally, when professionals discuss children’s knowledge, they tend to focus on children as peers. However, facilitating peer-support group activities for minors was reported by social service and child welfare NGO professionals in only three group interviews. Peerness was seen as a generational position to which adults lack access. The interviewees stated that children are much more likely to turn to and confide in their contemporaries than adults and that peer-support develops their social skills and self-confidence. Research on peer support amongst minors confirms this (Foster et al., 2016; Rogers, 2017). In one group interview, the child welfare NGO interviewees heavily emphasised that at its best peerness means powerful experiences of sameness with others, especially in relation to being in care, living in residential care or having an illness, disability or diagnosis. Children can provide support and knowledge for others based on their personal history.
Group-interview 8: […] when we talk as professionals most of the young people could not care less, but then when the young people, our experts, start talking you could cut the air with a knife, their whole demeanour sharpens up and they start focussing.
However, peerness is not something that was automatically seen as helpful; in professional contexts, it is supervised, administered and assessed. In one group interview, the child welfare NGO professionals described how they had engaged young people as coordinators in online chat discussions. Having minored in the role of a coordinator was seen as important; it made chat discussions more inviting, comfortable and convincing to their contemporaries. However, coordinators did not work alone but were supported and supervised by professionals. The interviewees felt that young coordinators need their support and that, at least for now, they have neither “had the courage” to leave them to work on their own nor fully considered the issue of young people working without supervision. These professionals also said that while young people acting as camp counsellors are there to provide peer support, they have no actual responsibilities as “they can just leave whenever they feel like it”. Thus, while the generational position of children as other minors’ contemporaries was regarded as a valuable resource, it was not a position of full responsibility.
Professional responsibility was also discussed by two managers from the health-care sector, who contemplated the importance of professional expertise in relation to child service user involvement. They emphasised that many children need therapeutic expertise, i.e. professional knowledge, not actions where hasty conclusions are drawn from their experiences. One gave an example of a public discussion in which child experts by experience criticised child welfare and mental health services in different public forums (social and print media). This interviewee reflected that many children using these services are “sick children” who have serious problems and do not necessarily understand what is in their best interest. Despite this, they are listened to by the media when providing experience-based knowledge. The interviewee explained that such knowledge could be considered as of the “sensationalist” kind, which attracts media attention.
Manager 15: […] if this is the end result of service user involvement, that some sick children tell about things that have been done to them and I mean this might have happened, but I mean, things are going awry ( […] ) if these who are regarded as experts by experience when they have really big and serious problems in their lives, conclusions are drawn based on what they say.
These two health-care managers expressed concerns that children’s participation involves risks, especially in relation to professional expertise. They felt that experience-based knowledge could be a threat, especially if it is considered equal or superior to professional knowledge. While these professionals acknowledged the importance of feedback on services, which children are also qualified to give, they saw experience-based knowledge as overvalued. Noorani et al. (2019) refer to the concept of “experiential authority”, which can contest professional authority. It may be that service user involvement is perceived as a threat eroding the credibility of professional knowledge. This argument positions children’s knowledge as a risk and not to be included in the knowledge base for boosting services as, for example, advocated by Pösö (2018).
In connection with professional expertise and responsibilities, some health-care professionals considered that the boundaries of children’s service user involvement in relation to professional expertise “have gone too far”. As minors, children cannot be considered responsible actors in the same way as adults or professionals. One interviewee argued that as minors have neither autonomy nor full citizen rights, their acting as experts by experience is highly problematic. This interviewee considered that many organisations, especially NGOs, “go with the flow and with the latest trends” and do not think through the possible ethical challenges and risks such as the exploitation of children’s experiences, fatigue and stress. In her view, children’s participation is one of those trends that are too easily and superficially adopted as an aim, especially in the non-profit sector, as they “do what they think they need to do to get funding”.
To summarise, children have unique everyday knowledge, which is primarily recognised as such in their intra-generational relations with peers. In their inter-generational relations, it is more a question of how and by whom the experience-based knowledge is used, this being the responsibility of professionals. In this sense, children are generationally positioned as important sources of knowledge but not as decision makers (Punch, 2020; Tisdall, 2017). For some health-care professionals, children are acting irresponsibly when they criticise professionals in public or question their professional knowledge and practices. Although such critical reflections were present in only three interviews, they help build a picture of the understandings present amongst professionals and of the ways in which the generational positioning of children influences how they are perceived as experts by experience. Much emphasis was put on their age, contrary to the view that children’s capabilities in presenting their views are not influenced only by their age but also by their experiences, interests and “the multiple milieus within which they live” (Walker and Misca, 2019, 378–379).
This study yielded insights on how professionals acknowledge children as experts by experience in social and health-care services. Although as minors, children do not have the same rights and responsibilities as professionals or adults generally, the UNCRC accords children several participation rights such as the right to express views and have them listened to and acted upon (Lundy et al., 2011). The analysis confirmed the importance of considering intergenerational relations and orderings (Punch, 2020; Alanen, 2009) when analysing children’s service user involvement, as expectations and understandings relating to the role and status of children are usually dominated by adults (Devine and Cockburn, 2018). Intergenerational positioning was evident in the professionals’ thinking in numerous ways, but especially in relation to professional resources, ethical expertise, children’s everyday knowledge, publicity and professional expertise.
It was evident in all the interviews that the professionals placed more emphasis on the challenges related to child service user involvement than its possible benefits. Health-care professionals emphasised parental needs and children’s vulnerability. Some of the professionals working in social services and child welfare NGOs perceived children as partners, although with reservations, discussing ethical issues widely and pondering the responsibilities of adults to protect children. All the professionals considered children’s participation a structural challenge for which they would need support and other resources in developing their organisational cultures. They also perceived children as a special and challenging group owing to their generational position as minors. Children were universally seen as fragile and vulnerable human beings; this and their lack of legal status meant that their rights to participation were conditional upon adults’ actions (also Tisdall, 2017, 62).
The professionals emphasised the uniqueness of children’s experiential knowledge and their role in providing social support for their peers. However, being a source of knowledge and a peer was considered important only in the context of issues that children are deemed to feel comfortable with. Serious themes, including abuse and violence, are the responsibility of professionals. Children are generationally positioned as the owners of their own, valuable knowledge. However, it is for professionals to decide how such knowledge is used and by whom. Thus, while children are important owners of knowledge and providers of peer support, they are not decision makers. Co-learning (Lee et al., 2018) or co-production of services (Tisdall, 2017) together with children is not something the professionals explicitly reported as an aim, as this would also require them to view children as decision makers.
The professionals considered that ethical issues are important and should be properly addressed when cooperating with children. The generational positioning of children as needing protection was most clearly evident in the domain of publicity. The professionals saw themselves as having ethical responsibility to support children’s participation while at the same time setting limits to it. One such limit concerns the way children present themselves as service users in the public arena. Here, the professionals saw protecting the anonymity of children as their key task.
Based on the present analysis, service user involvement is characterised by uncertainty and ambiguity regarding the respective rights and responsibilities of children and professionals. However, these challenges had been discussed with children in only one child welfare NGO. While the results indicate that professionals need to reflect on these ethical challenges, they rarely perceive children as partners in this process, largely owing to their generational position as minors. Intergenerationally, children hold the positions of peer and knowledge owner while how these positions are used is regarded as an adult responsibility. The results show that professionals easily prioritise their duty to protect children.
This study has its limitations. The selection of the research-participants was based on the authors’ networks established in connection with development project xxx (anonymised). The interviewed professionals were interested in service user involvement, and hence do not represent the wide spectrum of professionals in social and health-care. A further limitation is that the data were generated in one province in Finland. It is important to bear these limitations in mind when considering the findings.
Implications for future research and practice
The present results prompt the question of whether the needs of children are fully met, especially if service user involvement is developed mainly according to professionals’ perceptions. Professionals need training and resources in developing child service user involvement. The results should also encourage research on collective participation in multi-professional contexts, as they revealed different professional expectations and understandings. The way professionals conceptualise children’s participation is decisive for how they act and work (Križ and Skivenes, 2017). It would be useful for professionals to have a shared understanding, as children use many kinds of services. For children themselves, the issue is not about who organises services targeted to them but how they are organised and how their participation is supported (Larkins et al., 2014; Kiili and Moilanen 2019; ibid.).
In childhood and child welfare research, the criticism has been made that opportunities for child participation are all too often made available only to children judged to be capable of doing so by child welfare professionals and researchers (Kim, 2016; Kiili and Moilanen, 2019). In the context of service user involvement, this is a valid concern. Children were not considered to be partners in ethical reflection, despite the fact that children’s needs, aspirations and realities should be at the core of service user involvement. Several studies have shown that effective service user participation involves encouraging and supporting children to express their views and challenge uncritical acceptance by authorities of the gatekeeping of their knowledge by professionals (Kiili and Moilanen, 2019; Tisdall, 2017; Jackson et al., 2020).
In conclusion, more consideration should be given to the experiences and interests of children and the social realities within which they live and not only on their age (Walker and Misca, 2019). The question of what constitutes knowledge is also important. Noorani et al. (2019) see experimental knowledge as particularly robust when it is produced and examined collectively by service users. As stated by a few of the professionals in this study, collective user participation is a future challenge and could help professionals tackle ethical challenges such as child anonymity and the long-lasting risks associated with publicity. However, this needs a strong commitment to co-development: collective structures should not be developed for but together with children (Kiili and Larkins, 2018; Lee et al., 2018; Tisdall, 2017).
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About the authors
Johanna Kiili is based at the Department of Social Sciences and Philosophy, University of Jyväskylä, Jyväskylä, Finland.
Maritta Itäpuisto is based at the Department of Psychology, JAMK University of Applied Sciences, Jyvaskyla, Finland.
Johanna Moilanen is based at the Department of Social Sciences and Philosophy, University of Jyväskylä, Jyväskylä, Finland.
Anu-Riina Svenlin is based at the Department of Social Sciences, Kokkola University Chydenius Consortium, Kokkola, Finland.
Kaisa Eveliina Malinen is based at the School of Health and Social Studies, JAMK University of Applied Sciences, Jyvaskyla, Finland.