Recommendations from children and young people with disabilities for enhanced participation in local communities

Abstract

Participation of children and young people with disabilities is often restricted and needs to be higher on the agenda of relevant municipal service providers. With a sociology of childhood perspective and based on thematic analysis of two focus group discussions and one individual interview with children and young people with various (dis)abilities, we present and discuss their recommendations for achieving increased participation in activities and services within their local communities in two Norwegian municipalities. The findings are presented as six themes concerning service development participation, local activities, staff interaction, language and respect, community meeting places for youth with functional variations and inclusive built environments. Our findings should be of immediate concern for service providers, healthcare staff, policymakers and others who are responsible for services and policies aiming at increasing children’s participation in their daily life environments.

Keywords:

• Children
• young people
• participation
• services
• disabilities
• recommendations

REVIEWING EDITOR:

• Joe Thomas, Institute of Health and Management, Australia

SUBJECTS:

• Children and Youth
• Disability
• Research methods

Introduction

Having the right and opportunity to participate fully and directly in questions affecting one’s own life is fundamental for children and youth and promoted through both the United Nations Convention on the Rights of the Child (UNICEF UK, 1989), and the United Nations Convention on the Rights of Persons with Disabilities (2006). Despite the rights to and benefits of participation, accumulating evidence shows that participation of children and youth with disabilities is often restricted or slow to develop (Anaby et al., 2013; McNeilly et al., 2015; Tonkin et al., 2014; Willis et al., 2018). There is substantial evidence that children and youth with disabilities face additional barriers to participation (McNeilly et al., 2015). Implementing interventions that lead to significant, long-term social participation outcomes is challenging (Willis et al., 2017), and there is little experience and knowledge on ways to improve participation (Law et al., 2015). This article is based on a recent qualitative study and presents recommendations from children and youth with disabilities on how to promote participation in everyday life. The study is part of a research and innovation project called ‘Developing a method for strengthening the quality of municipal services to children and youth with disabilities’ funded by the Research Council of Norway in 2019 to assist Norwegian municipalities in improving the quality of services for the target groups (Eide et al., 2022).

Even if scarce, research and innovation efforts have been undertaken to fill knowledge gaps concerning children and young people’s experiences with participation. In a Nordic context, the recent research of Steinhardt et al. (2021) is particularly relevant, building on separate group interviews with children with disabilities, parents and healthcare professionals in Norway to explore their different perspectives on leisure activity participation. Children viewed positive peer relationships to be the most important factor. Parents called attention to children’s abilities, peer relations and equal participation, in addition to formal and informal support for the family. Professionals were concerned with how participation was influenced by the children-parent relationships as well as physical and institutional aspects (Steinhardt et al., 2021). Other studies confirm that social acceptance and positive peer relations are main facilitators for participation from children and youth’s perspectives (Wright et al., 2019). In a Dutch study, children, their parents and health professionals described ‘fun’ and ‘social contact’ to be significant facilitators of participation in sports (Jaarsma et al., 2015).

Taking a social justice lens and a relational understanding of participation, McNeilly et al. (2015) explored participation of children with disabilities and young people in Northern Ireland. Their study demonstrated how children and young people with disabilities frequently lack information to meaningfully participate in decisions affecting themselves, and how recognition of children and young people with disabilities in social interactions with professionals need to be paired with ‘a redistribution of resources and opportunities to have their needs met so that they are not disadvantaged and their voices are truly heard’ (McNeilly et al., 2015, p. 279). The authors call for professionals and parents to actively encourage participatory practices, provide children and young people with the information they need and further develop necessary communication skills to meet their needs.

New ways to develop services that deliberately support participatory practices and acknowledge children and youth as health actors and service users are emerging. Maxwell and Corliss (2020) provide a literature review on best co-productive practices in public services involving children and young people, highlighting five engagement levels: listening to children’s voices, supporting children in articulating views, considering children’s views, involving children in decision making, and shared power and responsibility in decision making. Co-production was found to be a means for exercising children’s rights to have their voices heard and represented in matters concerning themselves and provides opportunities for realizing direct and indirect benefits such as improved self-esteem, confidence and service development (Maxwell & Corliss, 2020). Co-production was however associated with a number of challenges including recognition of children as able and capable to co-produce. By elevating the voices of children and young people with lived experiences of disabilities in local communities, we contribute incrementally to the field by specifically providing knowledge on how challenges in creating conditions for participation can be addressed.

Theoretical framework

Drawing on fundamental premises from the sociology of childhood, we understand children, youth and childhood to be social constructions influenced by intersecting factors such as age, class, gender, (dis)ability and ethnicity (Prout & James, 2015). This implies seeing children and childhood in light of historical and sociocultural contexts. Since the 1980s, representing children as social actors has been one of the most important theoretical contributions of the sociology of childhood, and its parent field of ‘childhood studies.’ This perspective confirms that children’s viewpoints, social relationships and cultures are worthy of study in all their diversity and in their own right (Connors & Stalker, 2007; James, 2009; Swauger et al., 2017). To understand central themes in the lives of children, the sociology of childhood offers a theoretical framework to account for young actors’ agency, competence and participation in the world through paying attention to their narratives and personal experiences (Connors & Stalker, 2007; Prout & James, 2015).

In parallel, disability studies also underwent a paradigm shift of re-conceptualising disability and persons with disabilities (Tisdall, 2012). Several scholars have promoted unifying the sociology of childhood with the social model of disability to explore children’s disability experiences (e.g. Connors & Stalker, 2007; Shakespeare & Watson, 1998). The social model builds on the notion that disability is a result of social barriers as opposed to individual traits (Barne- og likestillingsdepartementet, 2016) and is founded on principles of equality and rights (Kanter, 2015; Sandland, 2017). The work of Thomas (1999) has been important in further developing a view of disability that directly relates to people’s lived experiences and as being rooted in unequal social relationships (Connors & Stalker, 2007). The International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) (World Health Organization, 2007) has been a crucial tool for positioning participation as a central component in understanding health and disability for children and youth, defining participation as ‘involvement in life situations’ (World Health Organization, 2001, p. 10).

In their efforts to bridge developments in the sociology of childhood with studies of child health and wellbeing, Brady et al. (2015) argued that situating children and young people as health actors and service users through specific investigations of their lived experiences is an important cross-cutting theme. In line with Steinhardt et al. (2021), we take participation to be a multidimensional construct which includes both objective and subjective perspectives, and following Imms et al. (2016), this complex construct can be discussed and applied both as a process and an outcome. We seek specific recommendations from children and young people through their expressed accounts about participation.

Drawing on perspectives from disability studies and the sociology of childhood, Connors and Stalker (2007) explored children with disabilities’ understanding of disability in Scotland. They found that children experienced disability in four ways: impairment, difference, other people’s reactions and material barriers. Parents were the children’s main sources of information about the cause of their impairments, but generally the topic of impairment seemed to be absent in discussions within the families. Although none of the children seemed to view impairment as a ‘tragedy’, children with disabilities tended to view impairment in medical terms, something that could be explained by their regular contact with health services. Regarding differences, interestingly, the majority of children focused on ‘sameness’ – how their lives were similar or the same as those of their peers, whereas parents usually thought their children viewed themselves as different from other children. Still, inappropriate comments and behaviour of other people, both known and strangers, could make children feel different and of lesser value. Material barriers included lack of access to leisure facilities, transport difficulties and lack of support with communication. Connors and Stalker (2007) connected the latter two respectively to what Thomas (1999) identified as ‘barriers to being’ and ‘barriers to doing’.

The study

Municipalities in Norway are required to organize and implement relevant services to promote participation and inclusion of children and youth with disabilities. The overarching philosophy of our research and innovation project is that establishing close collaboration and co-creation between people who are likely to use and offer services and acknowledging their understanding of the current context and needs within their everyday lives is a premise for best practice service development. As such, the project includes focus group discussions (FGDs) with children and young people with disabilities, parents and municipal service employees in various Norwegian municipalities (Eide et al., 2022). To ensure that services in fact reach the ambitions of inclusion and participation, we need to understand how services work both as part of the environment and as agents for changes in the environment.

Our research and innovation project attempts to address challenges with participation through a collaboration with different municipalities in Norway, utilising participatory research and service development. In this article, we specifically concentrate on first-hand insights and experiences of children and young people from two Norwegian municipalities as expressed in two FGDs and one individual interview conducted in 2019–2020. The purpose is to address the following question: Which recommendations do children and young people with various (dis)abilities offer for achieving enhanced participation in activities and services within their local communities?

Our work contributes to strengthen representation of children and youth perspectives in the context of various (dis)abilities, participation and service use and development. Reflecting our project’s orientation and research questions, we clearly expect that the voices of children and young people are crucial in this conversation. Therefore, we hypothesize that their recommendations will enhance the discourse about equitable service delivery for children and youth living with disabilities and provide solid contributions to service development.

Method

Research design

The article is based on a deductive thematic analysis of two FGDs with children and young people in addition to an individual interview with a young adult. FGDs can provide rich descriptions of phenomena, enhancing our understanding of the context surrounding events in addition to the events themselves (Sofaer, 1999). FGDs are characterized by a) involving a small number of people who have something in common; b) gathering data based on the participants’ subjective experiences; and c) having a facilitator guide the discussion by proposing topics of interest (Hennessy & Heary, 2005). FGDs are well suited to uncover latent attitudes and collective opinions and hence to form a more holistic picture of the relevant context. A key assumption is that the group context is suitable to reach a meaningful conversation among peers leading to a careful unpacking of the phenomenon (Kroll et al., 2007). An important advantage of using FGDs with children is the potential to establish a safe peer environment in which the power imbalance between adult and child in individual interviews is evened out and experienced support allows participants to respond more openly (Heary & Hennessy, 2002; Hennessy & Heary, 2005). We chose a deductive thematic analysis (Nowell et al., 2017) based on the environmental factors of the International Classification of Functioning, Disability and Health (ICF) (World Health Organization, 2001), categorizing themes into strengths, weaknesses, and recommendations, to ensure that the findings would be directly applicable for service providers, healthcare staff, and policymakers. This approach allows for immediate, targeted actions to enhance services and policies affecting children’s participation.

The research team included academics and practitioners: one female and two males with PhDs (A1, A3, and A4), and one female and one male with master’s degrees (A2 and A5). Their combined expertise covered participatory design with and for children, disability research, service design, and policy development. The on-site research team had considerable experience and training in participatory research and facilitating FGDs.

Research participants

The participants comprised two mixed gender groups of children and young people, with five participants in each. The age range of our study participants spanned 10–34 years with a principal segment of 10–25 years. One of the participants participated as sibling, bringing his unique view as a brother of a girl with profound disability into the discussion. Diagnoses represented in the study included cerebral palsy, mild cognitive impairments, physical impairments and severe multifunctional disability.

In addition, an individual interview with a young adult in his early 20s was carried out based on recommendation from one of the municipal teams. The interviewee was a former resident of the municipality who had extensive earlier experience with the municipal services. Given his active commitment to the target group, the project team considered it relevant to invite him for an individual interview.

Participant recruitment

Participants were selected through purposive sampling. The inclusion criteria concerned a) participants’ interest; and b) participants’ ability to express experiences on their own or through a proxy. We aimed for the groups to include 4 − 6 participants with gender balance and diversity in represented disabilities, diagnoses and ages. The collaborating municipal teams identified an employee to be responsible for the recruitment process for the FGDs. Information letters, which included a presentation of the research and the research team, guiding questions and consent forms, were sent to those interested in participating. The recruiter quality assured the descriptions of the research team’s assumptions, reasons and interests in the research topic. A preparatory task was sent to the participants in advance to ensure that participants were more informed and confident upon attendance. In line with best practice participatory research principles, this approach helps establish a relationship before the study begins by building familiarity and enhancing communication.

For the individual interview, the young adult was first approached by the recruiter responsible for the given municipality to clarify interest. Next, the researchers were given his contact information and sent him the information letter including guiding questions and consent form.

Data collection

FGD1 was conducted on site in a northern municipality in December 2019. The group consisted of three female and two male participants. All of the participants knew or were familiar with at least one other participant. Four researchers from the project team were present of which one (A1) was responsible for facilitating the discussion while the others made notes and supplemented with questions or comments.

FGD2 was conducted on site in a western municipality in February 2020. The group consisted of one female and four male participants. All participants were familiar with each other and most of them knew each other well. Three researchers from the project team were present of which one (A1) was responsible for facilitating the discussion while the others made notes and supplemented with questions or comments.

Both FGDs were conducted in a meeting room at the respective town halls, lasted 90 minutes each and included an adult assistant (municipal employee) who was familiar to the most or all of the participants. The research team started by welcoming the participants and introducing ourselves by using a preparatory task developed by SINTEF called ‘My home’ (Figure 1), displaying a house on which they could draw or note down everyday activities and close relations. The FGDs started out with each participant explaining what they had included in ‘their home’. We made sure to explain the purpose of the project, emphasized that their participation was voluntary and gave examples of how they could withdraw from the project or avoid answering anything they did not want to discuss. Both FGDs were concluded with a lunch together after all questions had been discussed.

Figure 1. Preparatory ‘My home’ task (Source: SINTEF).

The individual interview, which took place in January 2020, was conducted at the participant’s workplace because it was considered the most convenient. The interview lasted 60 minutes. Two researchers from the project team were present of which one (A3) was responsible for facilitating the discussion while the other made notes and supplemented with questions or comments.

The FGDs and the interview were audio recorded upon agreement and semi-structured around topics and questions reflecting our ambition to understand which, how, when and why activities are experienced as accessible, relevant and fun for our participants in their local communities, which ideas they have for improvements, how they understand the key concepts of participation and inclusion, and their recommendations for improvements. Two central questions for sparking conversation about recommendations were: ‘If you were the leader of your municipality, what would you have done for children and youth? Do you have any advice you would like to give to parents about activities?’ The individual interview was centred on the same guide and adapted during the conversation.

Data analysis

One of the researchers transcribed the first audio file, whereas a professional transcriber did the remaining two. We followed the steps of thematic analysis: familiarizing with the data, generating initial codes, searching for themes, reviewing potential themes, defining and naming themes and writing their descriptions (Braun & Clarke, 2012).

Inspired by Anaby et al. (2013), we used a de­ductive approach by employing the environmental factors of the ICF, namely: services/systems/policies (e.g. community programs); attitudes (e.g. perceptions about disability); supports/relationships (e.g. people or animals who give practical or emotional support); and products/technology/natural environment (e.g. accessibility of equipment, buildings or landforms). The data was also coded by using three additional categories of supports, barriers and recommendations. These factors and categories collectively functioned as a coding tree.

For constructing the subthemes, two researchers (A1 and A2) organized and coded the data from each of the FGDs and the individual interview. First, data associated with each ICF factor was colour-coded in a shared digital spreadsheet. Second, the colour-coded snippets were assessed in relation to the categories of supports, barriers and recommendations. The initial colours were kept but adjusted in strength. Next, a description of each proposed subtheme was formulated and accompanied with illustrative quotes and fictional names. Finally, three researchers (A1, A2 and A3) collectively reviewed and modified the subthemes.

The findings in this article mainly concern the recommendations yet informed and supported by insights and experiences responding to supports and barriers.

Trustworthiness

The criteria of credibility, transferability, and dependability are key components to establish trustworthiness in qualitative research (Guba & Lincoln, 1989). Credibility concerns accuracy and match between participants’ views and researchers’ representations (Nowell et al., 2017). Our on-site research team was committed to creating a safe atmosphere where participants could speak freely and trust our intentions. While one researcher led the conversation, the other(s) were active listeners and contributed with questions and comments where appropriate. Both researcher triangulation and data triangulation, conducted through the preparatory task and the conversation, where verbal expressions and observed nonverbal cues, such as nodding, laughter, and affirming or negating signals, formed part of the basis for credibility. The research team conducted internal peer debriefing in multiple rounds, both immediately following the FGD with the on-site team and during the analysis process with the full team. These measures ensured coherence and consensus.

Transferability refers to how the findings of one study could fit into other contexts (Koch, 2006). Our selection of data analysis and the construction of findings were indended to provide municipalities with the opportunity to take targeted action straightaway. Throughout the project, we aimed to demonstrate that the perspectives of children and youth with disabilities, as well as those of parents and service employees across various municipalities, can be used as a driving force for service change and innovation. The theoretical framework of the sociology of childhood provides a perspective considered suitable for the development of services and policies related to participation and inclusion of children and youth.

Dependability is demonstrated by a research process that is logical, traceable and clearly documented (Nowell et al., 2017), as well as by the ways in which a research process can be audited (Koch, 2006). The research team has followed a systematic research process in which decisions related to theory, method, and analysis have been justified and explicitly discussed in various parts of the article. Reports with findings and the process by which we arrived at them were presented and shared with the municipalities (Eide et al., 2022). The overall feedback was that the findings were recognisable and made sense.

Ethics

Written informed consent to participate in the research was obtained from the children and their parents or legal guardians when under the age of 16 or otherwise required. To ensure participants’ anonymity, we removed all identifying information from the transcripts and referred to participants by age or terms such as child or young person. Transcripts were not returned to the research participants for comments or corrections; however, data analysis and preliminary findings were presented to municipal stakeholders along the way. The study was reviewed by SIKT – Norwegian Agency for Shared Services in Education and Research (reference number 506299). The data that support the findings of this study are available from the corresponding author, MH, upon reasonable request.

Limitations

A limitation of the present study is that we only met the participants once. Conducting a second round of FGDs or repeat interviews could have provided more information because the participants would have had more time to reflect. Another limitation may be that children adopt perspectives raised by other children instead of offering their own (Heary & Hennessy, 2002). As such, it would have been useful to observe and interact with the participants in their everyday environments for deeper understanding of the ways in which participation is experienced.

Findings

As noted by the research team, the two focus groups differed in that participants in one group appeared more verbally dominant and consistently provided examples at a more abstract level, while the other group had some participants who spoke more frequently and provided rather concrete examples, with others contributing more through affirmations such as nodding and brief responses. Despite the variability in responses within and among the participants, the findings still reflect coherence. While most of the direct quotes were provided by participants in one of the FGDs, the themes are supported by meaningful data across both FGDs and/or the individual interviews, and are thus considered robust themes. This coherence is conveyed through the use of words indicating quantities in the presentation of the findings.

From the preparatory task, we found that all participants had hobbies or participated in activities that they enjoyed and made them happy, such as playing the piano, listening to music, going to the gym, swimming and job training, computer games, wheelchair bandy, hiking, bowling, watching TV and movies and being at the weekly club. Here, we present six themes representing participants’ recommendations for achieving enhanced participation in activities and services within their local communities.

Opportunity to participate in service development

Our participants expressed an interest in influencing service development. A general interest to participate was confirmed throughout their engagement in the focus groups where they shared experiences, listened and responded to their peers, with one participant explicitly asking when we could repeat the session. They wanted to attend, be involved in and have opportunities for engaging in matters of concern. A second participant articulated a particular interest by explaining how she had previously tried to contact the municipality and wanted to exercise participation through dialogue with the public service providers:

‘I’ve always wanted to talk to the municipality-man, but I haven’t gotten a hold of him. So, it is at least a request [I have].’ (Camilla, 18 years old)

This request to establish some kind of mutual exchange of experiences and ideas with service providers also relates to the specific request of a third participant who called for clearer information and communication about what was possible or realistic to achieve concerning participation in activities and services within their local community. He pointed out how much of the information they had received came through their own networks rather than through the municipality.

The participants gave examples of activities that they considered successful in terms of facilitating participation and good experiences. Specifically, a gymnastics group and an activity week were discussed. One participant described how the gymnastics group divided the children into smaller groups based on their current abilities and how it was combined with additional individual training support once a week. Another participant talked about an activity week arranged by the seniors in high school each year to which people with various (dis)abilities are invited on equal footing with everyone else who wants to participate.

Several examples of activities lacking adaptation were also given. One participant explained that she struggled to get the volleyball over the net and the feeling of never succeeding while people around commented and laughed. The lack of opportunities for people in wheelchairs to participate in football and handball was mentioned by several participants and one girl explained how the selection of location for playing football can prevent participation for people in wheelchairs:

‘One can make it easier for wheelchair users by having it indoors at a gym where there is no artificial turf pitch, for example, because then it is much easier to roll while playing football, because it is very hard to roll on artificial turf pitch, and it’s not allowed either. Yes, that was what I was told, so … because they say it’s being destroyed.’ (Basma, 14 years old)

The participants were concerned about seeing others, in similar situations as themselves, thrive and for the municipality to have better service.

Local activities that are available

Several participants expressed that they wanted an overview of existing activities and ways in which one could participate. Some said that the activities they participated in appeared a bit random and they did not seem quite sure why they had gotten into this when they started.

‘I would have made sure to get informed about what different activities we have here in [name of place], and then I would have done it in such a way that everyone can participate in the various activities.’ (Henrik, 20 years old)

Others would like more activities at the weekly club, such as listening to music, going to the city centre for concerts, seeing more cultural shows or having better access to books.

More time with staff and access to personal assistants

One participant experienced that the staff in the residential care home had little time for togetherness and always had to hurry on to the next resident. The participant would have liked the staff to have spent more time with the residents to get to know them:

‘In the past, the staff was often around us and got to know us and stuff. Now they, mostly, don’t even have time for us.’ (Ivar, 34 years old)

Some participants specified that they would like to choose the gender and age of their support contact. Another participant would have liked a support contact at their own age, preferably someone they knew from before.

One participant emphasized experiencing challenges from a systems and policy standpoint, stressing how the arrangement with a support contact was not considered good enough due to a low number of hours and poor wages. He was particularly concerned about the specific service user-controlled personal assistance (UPA) seeing it as a tool for people to be able to participate and do the things they wish to do in everyday life. The aim of UPA is to give people with disabilities and substantial long-term needs for personal assistance more freedom to manage their services and everyday lives themselves (Askheim, 2019; Helsenorge.no, 2023). In our participant’s experience several municipalities have little knowledge about UPA as a tool and that the bar is set high to receive it. As an example, the participant explained how the decision on UPA is linked to the municipality and not the person. Despite his desire to move back to his childhood municipality to stay close to family, he is currently reluctant to do so because he is afraid of losing the freedom he has experienced with UPA:

‘If I for instance moved to [name of municipality], then I have to apply for UPA again. And that is very, very stupid.’ (Leif, 21 years old)

More focus on language and respect

Language is crucial in communication, and several of the participants recounted their experiences of being bullied or stigmatized through use of words such as ‘handicapped’. The importance and effect of changing the use of language was demonstrated when one of the participants coined the term ‘functional variation’ in the FGD as a new concept. Several of the other participants as well as the researchers were inspired by this and used the new term multiple times throughout the rest of the conversation. As eloquently noted by the participant who introduced the term,

‘And a reason why it’s called functional variation is [to point out] how you actually [do] manage and how you truly [do] function.’ (Camilla, 18 years old)

The participants wanted more attention to language and respect, which relates to attitudes. Their concrete suggestions were to offer training courses about functional variation for all who do not have knowledge and to arrange for meetings with parents of pupils who bully and tease others:

‘I would kind of have found out who the pupils were and then I would have found out who the parents were and then set up a meeting with all parents, meaning for the one who was bullying and teasing and similar and taken a serious talk to say this you have to learn not to do… and then when they get back home they should explain the children or that person, the daughter or son, that “this you have to quit because it is not okay”’ (Frida, 10 years)

Attitudes can act as both supports and barriers to participation. Our participants described the ways positive language, self-image and being independent enhanced their participation. However, our participants also experienced negative attitudes and behaviour from both peers and adults, in and outside services, as general barriers to participation. They pointed to the way school can be an arena in which lack of support or direct intimidation from classmates as well as teachers and health nurses contribute to hindering participation. Two participants described it like this:

‘I have been asked because I walk a little weird and stuff and I do get very sad because, in one way, I think, "Oh, they are trying to bully me, they are somehow about to start bullying”; but in a different way, I think, "Maybe they’re trying to help me, sort of….” But most of all, I think they are, in a way, trying to bully me a little and then I just feel like walking away because I do not like to answer to this.’ (Frida, 10 years)

‘She was new, of course … the teacher, and then she came back and asked what kind of [hand]writing this was, or who had written it. And of course, it was me. And then she turned around to everyone in the class, pointed to the board, and said, "Look here folks, this is how you shouldn’t write ‘cause this is the worst writing I have ever seen". It’s for a reason that I say I have writing difficulties: [It is] because I’m afraid to write, so.’ (Camilla, 18 years old)

Community for youth with functional variation/a meeting place

The participants desired more commitment from the community supporting and empowering people with functional variation:

‘Like, that we could in a way have created a community for people who are disabled or have functional variation, that they could have been together more and had fun and enjoyed themselves.’ (Geir, 17 years old, sibling)

Several of our participants talked about experiences of social exclusion and a limited circle of friends. Networks were identified as a barrier when participants struggled to find and meet peers in similar situations. The participants requested relevant meeting places where they could meet and talk or do something with others in similar situations. A physical meeting place was preferred so that youth could travel or experience live interaction. The municipality was requested to take the initiative to establish and coordinate such a meeting place.

Built environment that promotes participation

Several participants requested built environments that facilitate participation. The specific examples given were sports fields and changing rooms. One participant said,

‘I would first of all make sure that all wheelchair users had access to the activity they enjoy.’ (Basma, 14 years old)

This request must be seen in context with how participants identified the built environment as a barrier. One example being the outdoor football field with artificial turf pitch which was not deemed suitable for people in wheelchairs. Another example concerned lack of universal design in the changing rooms in the swimming pool where a participant experienced discomfort associated with other visitors’ glances and whispers:

‘If we are going to the pool, there is always someone who is sort of watching me while I change. It’s… I haven’t been asked, but it’s those looks that sort of reveal what they… what they’re thinking or something, the whispering or […], but it’s that feeling that everyone is looking at you’ (Camilla, 18 years old)

Discussion

We set out to investigate which recommendations children and young people with various (dis)abilities present for achieving enhanced participation in activities and services within their local communities. Our participants requested investments in areas connecting to all aspects of environmental factors, defined in the ICF-CY (World Health Organization, 2007, p. xvi) as ‘the physical, social and attitudinal environment in which people live and conduct their lives’.

Three recommendations belonging to the services/systems/policies category were identified. First, our participants placed participation on the municipal agenda. Children and youth want to attend, be involved in and have opportunities for engaging in matters of concern. Here, we would like to emphasize the value of acknowledging the process of participation as a means to realize participation (Willis et al., 2018). Imms et al. (2016) challenge the view that participation is primarily understood as a downstream effect of rehabilitation, and rather promote the idea of viewing participation as an entry point for changes by promoting its value as a means. Their conceptual framework is designed to position participation as both a means and an end, with an intention to inform and unify research and practice across education, health and lived experience. This aligns with emerging co-productive practices relying on acknowledging people as health actors and service users. Second, our participants called for an overview of existing activities and clear information about possibilities for what could be achieved. Access to information is a commonly reported barrier to participation of children and youth with disabilities (Anaby et al., 2013; McManus et al., 2006; McNeilly et al., 2015; Radell et al., 2008). Moreover, a lack of low-threshold services was identified as a service-related barrier that restricted the feeling of freedom. Other studies have shown that experiencing interconnectedness with their environments stimulated children’s feelings of happiness, excitement, freedom and acceptance (Harding et al., 2009) and that the environment often can be identified as a mediator of successful participation (Heah et al., 2007; Tonkin et al., 2014). One aspect of low-threshold services can be understood in terms of the importance of participating in community activities and experiencing a sense of belonging (Willis et al., 2017). Third, our participants would like to spend more time with staff in residential care or day settings and increased UPA support. Service-related barriers to participation were perceived as fixed municipal constraints and their inability to adapt, weaknesses in the support contact service and late or inadequate support. This is in line with other studies recognizing time pressure (Mihaylov et al., 2004), lack of support from staff and service providers (Anaby et al., 2013) and rigid or non-inclusive policies within institutions (Anaby et al., 2013; Law et al., 2007) as significant service-related barriers influencing successful participation. The quality of the interaction with service staff was also connected to participation. For example, having staff showing positive commitment by initiating processes for obtaining access to support contacts, residential care or day settings can make an important difference. This is in agreement with the findings of Steinhardt et al. (2021), who identified inclusive/competent activity leaders and leisure assistance as facilitators for children’s participation.

Regarding attitudes that facilitate participation, our participants reflected on how positive language, self-image and being independent enhanced their participation. This aligns with Heah et al.’s (2007) findings, in which both children and their parents recognize such aspects when defining successful participation. Similar to Steinhardt et al. (2021), our participants also experienced negative attitudes and behaviour from both peers and adults, in and outside services, as general barriers to participation. They requested increased attention to language and respect. This should be prioritized in further development of services. As pointed out by Law et al. (1999), several studies confirm that getting to know people with disabilities through integration and inclusion is an effective method for changing attitudes.

Further requested service aspects relate to the supports/relationships category and include new and relevant meeting places, improved quality, and specific as well as more services. Studies focusing on participation as a primary outcome have found that tailored interventions containing elements of education and mentoring enhance participation (Adair et al., 2015; Anaby et al., 2018). Integrating such elements could be worth exploring in future services. The participants frequently mentioned school as a relevant arena and experiencing lack of support from school was identified as a barrier to participation. This is also emphasized in other studies, for example a large empirical study in Canada found that the highest overall impact of barriers was linked to school and work (Law et al., 2007). Our participants told stories demonstrating how social exclusion and a limited circle of friends undermined the quality of their experienced participation. Related research emphasizes that school participation of children and youth is challenged by the absence of peer buddy systems or the presence of bullying and social marginalization (Law et al., 2007).

Concerning the product/technology/environment category, the participants called for built environments that facilitate participation. Our participants confirmed that appropriate adaptation of housing/residence, work and activities caused positive experiences and emotions. In their scoping review, Willis et al. (2017) stress that activities in which children experienced success were consistently considered meaningful and influenced their activity choices, persistence and overall enjoyment connected to it. However, lack of universal design was expressed as a significant barrier. Similar to other studies (Anaby et al., 2013; Heah et al., 2007; Tonkin et al., 2014), our participants also pointed out inaccessible facilities and costs as barriers to participation.

From a sociology of childhood perspective, an interesting finding is that our participants did not cite physical inability as an explicit reason for non-participation. This contrasts findings from other studies, such as the study of Heah et al. (2007) and may be due to the specific questions we asked. However, it could also be the case that our participants were indeed accustomed to the mindset of viewing the environment as the key factor to participation as opposed to their own bodily condition. The latter seems likely given that several participants promoted a desire to contribute to share their lived experiences and had concrete ideas for improving services with regards to successful participation, similar to the findings of Connors and Stalker (2007). Hence, our participants had a clear understanding about how services can be developed to be agents for change in the environment. Indeed, one of the requests eloquently confirms a mature understanding of agency – i.e. demanding a seat at the table to participate in service development.

Conclusions

The findings of our study provide recommendations and experiences from the viewpoint of children and youth with various (dis)abilities regarding their participation in activities and services offered in two Norwegian municipalities. We argue that these recommendations contribute to address challenges with participation as both a process and an outcome. The voiced experiences and needs by our participants represent important knowledge for service providers in charge of ensuring a desired quality. From the participants’ perspectives, developing services through target group collaboration seems to be a desired, yet underexploited approach to reach goals of promoting participation and inclusion of children and young people with disabilities.

Returning to our hypothesis that the recommendations of children and young people will enhance the discourse about equitable service delivery for children and youth living with disabilities and provide solid contributions to service development, we suggest it is confirmed by findings that cover all aspects of environmental factors. Moreover, our participants demonstrated an interest in sharing experiences and provided specific ideas for improving the quality of the municipal services in question. By speaking from experiences that encompass participation in and across various services that children and young people engage with, from daily ones like school to regular ones like leisure activities, or more infrequent ones like annual events, we can also assume that children and youth’s perceptions of equality and diversity in service delivery and local communities can, in turn, contribute to strenghten inclusion and participation.

Our findings are important for improving the participation of children and youth with various abilities in service use and development and should be of immediate concern for service providers, healthcare staff, policymakers and others who are responsible for services and policies aiming at increasing children’s participation in their daily life environment. Looking forward, raising our gaze, and taking into consideration what our participants formulated as future challenges, we find at least three initiatives necessary when meeting the target groups for discussing and forming future improvements in their life world. Firstly, the municipality should create a cross-sectoral strategy for children and young people with disabilities, where they are included as contributors to the strategy with all their knowledge and commitment. Secondly, the strategy should include a strong and coordinated structure comprising all the agencies with responsibilities towards the target group, with a visible, strong and vital executive coordinating unit of the strategic plan. Finally, the strategy should include a hub – an arena for a mixed variety of physical activities, cultural, social, and gaming events, powered by passionate people and strongly supported, both financially and ideologically, by the municipality. This hub could also be responsible for community information-sharing, education of support personnel and general promotion of participation.

Disclosure of interest

No potential conflict of interest was reported by the author(s).

Acknowledgments

We thank all the participants, especially children, youth, young adults and staff participating in the FGDs and the interview and the participating municipalities.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by The Research Council of Norway, Grant number 296365.

Notes on contributors

Marikken Høiseth

Marikken Høiseth, PhD in Design from the Norwegian University of Science and Technology (NTNU), is Associate Professor and Deputy Head of the Department of Design at NTNU. She leads NTNU’s PhD programme in Design and is a researcher at SINTEF Health Research. Her research interests include human-centred design, design for and with children, meaning-making processes, service design, user experience, social semiotics, healthcare design, and co-design.

Marit Støylen

Marit Støylen is a service designer with a Master’s degree in Design from the Oslo School of Architecture and Design. Before joining SINTEF and the reported research project, she worked on creating high-quality user experiences for various organisations. She has significant experience in qualitative research and effectively conveying the user’s perspective.

Arne Henning Eide

Arne Henning Eide (PhD) is Chief Scientist at SINTEF Health Research and Professor at Department for Social Work at NTNU. His research interest spans disability research, participation and inclusion, access to health services and community-based participatory approaches.

Dag Sverre Ofstad

Dag Sverre Ofstad holds a PhD in Professional Practice from Nord University Bodø, Norway. He managed the Norwegian National Advisory Unit on Disabilities in Children and Youth (NKBUF). Ofstad was the Project Manager and researcher for the project “Developing a Method for Strengthening the Quality of Municipal Services to Children and Youth with Disabilities” supported by the Research Council of Norway. His research focuses on youth development, exploring how relational interactions help them understand themselves and harness their capacities, talents, and entrepreneurial qualities for their own and society’s benefit.

Emil Hansen

Emil Hansen, with a Master’s degree in Economics specialising in socioeconomics, has a diverse career in healthcare management and public service. He has served as a hospital director in Norway and Spain, a State Secretary in the Ministry of Social Affairs, and the president of the ‘Healthcare Leadership Association.’ He also has experience as a researcher at NKBUF.