Facilitators and Barriers in the Acquisition of Self-Determination in Children with Intellectual Disabilities Who Exhibit Behaviors That Challenge: A Qualitative Study

Design

This study adopted an exploratory–descriptive design (Hernández Sampieri, Fernández Collado, and Baptista Lucio 2014) to provide an overview of the contextual characteristics that may promote or hinder the exercise of self-determination in a group of children aged 6 to 10 years with ID who exhibit BtC. The research was guided by Actor–Network Theory (ANT) (Latour 2005), which facilitates the understanding of how children’s interactions shape their actions, from initial motivation to goal achievement. ANT provides an adaptable conceptual framework for understanding the social life of both people and objects, based on the premise that for action to occur, contributions from a series of activities are required, in which both human and non-human agents (such as artifacts or tools) can participate (Mol 2010).

The role of each agent in the development of the course of action initiated by the child can be traced through the interactions established within their participation environments. These environments are distributed across a network of relationships that may span different contexts (Correa 2023), allowing for the description of factors that facilitate or hinder the enactment of actions at various socioecological levels (Callon 2001). Through ANT, both human and non-human agents are considered key mediators of the child’s actions, influencing the achievement of their goals. This study focused on identifying these agents and examining their roles as intermediaries that shape the exercise of self-determination, either enabling or constraining opportunities for children to act self-determinedly.

Sample

The inclusion criteria required that participants be mothers of children aged 6 to 10 years with ID, who were enrolled in school and exhibited BtC, as identified in a previous study led by one of the co-investigators. That study involved a large number of families from various regions of Chile and included the administration of the Strengths and Difficulties Questionnaire (SDQ) (Goodman 1997) to help identify BtC.

From this database, ten mothers residing in the Metropolitan Region and belonging to the middle socioeconomic segment were initially invited, in order to minimize variability in factors such as access to rehabilitation or educational services. However, due to recruitment challenges, the search was expanded to other regions in central Chile, and the socioeconomic criterion was relaxed. The final sample included five mothers from Santiago (Metropolitan Region), two from Viña del Mar (Valparaíso Region), and three from Rancagua (O’Higgins Region). All participants spoke Spanish, and all interviews were conducted in that language. No exclusion criteria were applied.

A summary of participant characteristics is presented in Table 1.

Instrument

Data were collected through semi-structured interviews divided into three sections. Section 1 included open-ended questions aimed at characterizing the child based on their interests, preferences, and the challenges perceived by mothers in child-rearing. Section 2 explored how families understood the concepts of self-determination and BtC. At the end of this section, standardized definitions of self-determination (based on the CAT, Wehmeyer 2008) and BtC (Emerson and Einfeld 2011) were provided. Using these definitions, participants identified situations in which their child acted self-determinedly. Section 3 focused on identifying factors that promoted or hindered self-determined actions and explored mothers’ expectations regarding their children’s development.

All interviews and the initial data analysis were conducted by the principal investigator, with ongoing discussions and validation from the co-investigators throughout the research process.

Procedure

The sample was drawn from participants in a prior project led by one of the co-investigators, which focused on the mental health of mothers of children with ID who exhibit BtC. The database from that study was reviewed to identify individuals who met the inclusion criteria and had agreed to be contacted for future research. Each potential participant was contacted and informed about the objectives of the current project and the nature of their participation.

Those who agreed to participate were invited to either a face-to-face or virtual meeting, according to their preference. During this meeting, participants received detailed information regarding the study’s objectives, procedures, potential risks and benefits, and ethical safeguards. They were explicitly informed that participation was voluntary and that they could withdraw at any time without explanation or consequence. Written informed consent was obtained prior to the interview, along with permission to record the session (audio or video, depending on the interview format), which was documented at the start of each recording.

The informed consent process guaranteed the confidentiality of all information shared. Identifying data were removed or pseudonymized during transcription and analysis, and all data were stored securely and scheduled for destruction five years after project completion. These procedures were reviewed and approved by the Ethics Committee of Universidad de los Andes (CEC2022012).

All interviews were conducted by the lead researcher, a clinical psychologist with over ten years of experience working with persons with disabilities and their families. His prior clinical and research experience informed his approach to participants and the interpretation of their narratives. Given his professional background, it is possible that participants perceived him as an expert, which may have influenced the way they described their experiences—particularly regarding parenting practices and help-seeking behaviors. To mitigate potential bias, the interviewer emphasized a collaborative and non-evaluative stance, expressing interest in learning from participants’ lived experiences.

The co-investigators, who are experienced researchers in socio-community studies, health, inclusion, and disability, acted as methodological advisors throughout the study, strengthening its reflexivity and analytical rigor.

Eight interviews were conducted online via Google Meet, and two were conducted in person at the researcher’s office. All interviews were recorded (audio or video, as appropriate). Sessions lasted between 45 and 60 min. Transcriptions were initially produced using the AI-based tool TurboScribe (https://turboscribe.ai) and subsequently reviewed and corrected by the researcher using the original recordings. For collaborative analysis and publication, the interviews were later translated into English by the principal investigator and reviewed by the co-investigators, who provided stylistic and grammatical refinements.

Data analysis

Data were analyzed using Thematic Analysis from an inductive perspective, allowing patterns and themes to emerge from the participants’ accounts (Braun and Clarke 2006). The principal investigator conducted the initial coding, which was reviewed and refined collaboratively with the co-investigators to ensure analytical validity.

Data from each interview were segmented based on issues raised by participants and subsequently grouped into 15 preliminary themes, including: definitions of self-determined behaviors and BtC, importance of self-determination, expression of will, participation at school, participation at home, relationships with peers, child-rearing challenges, resources, management of BtC, support networks, self-determination promoters, use of technology, limitations to self-determination, and technical supports.

These themes were then coded for content (Guest, MacQueen, and Namey 2012), leading to the identification of three core themes: (1) definitions, encompassing participants’ understandings of BtC and self-determined behaviors; (2) contexts, referring to the settings in which children engage in self-determined actions; and (3) actions and intermediaries, addressing the actions and mediations of other actors that facilitate or hinder self-determined behaviors, from initial motivation to goal attainment.

The themes were further organized into two analytical categories. The first category comprised definitions of self-determined behavior and BtC, which were essential for understanding the conditions under which self-determination can be exercised (Summers et al. 2014). The second category combined contexts and actions and intermediaries, enabling the identification of courses of action that support the enactment of self-determined behaviors. This category also highlighted the roles of both human actors (e.g., caregivers, teachers, and peers) and non-human actors (e.g., routines, tools, and technological artifacts) as intermediaries that enable or constrain behavior across three key contexts: home, school, and peer relationships. These actors form networks that facilitate the transfer and replication of behaviors across different settings, consistent with the ANT framework.

Figure 1 schematizes the sequential stages of data coding conducted for the final analysis.

Figure 1

Relationship between BtC and self-determination

Self-determined behaviors were described as actions that express the child’s interests and through which they exercise autonomy and agency. Opportunities to engage in such behaviors were often limited to activities explicitly permitted by the mothers or to a narrow range of options, typically recreational tasks, choosing clothing, or participating in household chores under supervision. A positive perception of the child’s ability to act autonomously fostered greater freedom to choose activities, whereas a negative perception heightened maternal apprehension and restricted exploration of the child’s interests. The involvement of professionals, technicians, or family members often helped parents relax their control. This dynamic was illustrated by one mother: ‘Until 11:20 someone is watching him, monitoring, but if the time goes over, my husband says, “we have to go find him because he might be doing something else”. So maybe we don’t give him the option to decide what to do in those situations, or a teacher might say “I can’t manage him anymore”.’ (Interview 6)

Self-determined behaviors included both actions carried out independently (i.e., when the child could manipulate the required objects, such as watching television or using a cellphone) and actions in which a clear goal existed but assistance was required to achieve it. In such cases, others’ involvement ranged from supervision to direct intervention, depending on the child’s abilities and the adult’s perceptions. Thus, third-party mediation could either promote self-determination by enabling active participation, or constrain it when excessive intervention limited the child’s role in the activity.

The mothers typically equated BtC with oppositional conduct. However, analysis of their accounts revealed a broader range of behaviors reflecting resistance to participating in adult-imposed activities that did not align with the child’s interests. These behaviors resembled BtC manifestations described in adults with ID (Nicholson, Finlay and Stagg 2021).

According to participants, BtC often occurred when a preferred activity (usually recreational) was interrupted to engage in another that was either undesired or overly demanding relative to the child’s abilities. Such behaviors disrupted interactions in daily contexts, including school and home, and reduced opportunities to participate in new settings such as family outings or public spaces (e.g., cinemas and malls), contributing to social isolation and diminished access to support networks.

Overall, the mothers’ narratives revealed an inverse relationship between self-determination and BtC: higher levels of self-determination were associated with fewer BtC, whereas BtC tended to restrict opportunities for autonomous action. Participation in activities chosen autonomously increased motivation, sustained engagement, and skill development supporting self-determination, while reducing frustration. This relationship was mediated by adults’ perceptions of the child’s capabilities: positive appraisals encouraged exploration and autonomy, whereas negative evaluations led to restrictions and over-assistance that limited independent action.

Self-determination and BtC through contexts of participation

Based on these definitions, we identified factors that facilitate or hinder self-determined action by analyzing the child’s interactions with human and non-human actors across three participation contexts: Home, School, and Peer Relationships.

Peer relationships

A significant portion of the children’s daily lives unfolded in institutional settings such as schools or therapy centers, where interactions with peers were mediated by professionals. The use of therapeutic-sensory supports, toys, or individualized reinforcement strategies played a key role in preventing BtC and promoting group participation.

Such professional mediation supported the development of essential self-determination skills (self-regulation, decision-making, and persistence) which could be transferred to other contexts. Family involvement reinforced this process by allowing the replication of successful strategies across environments. One mother reflected: ‘She obviously doesn’t obey all day… In a very challenging moment for her, she gets motivated, puts on her sticker, and stops the behavior. For example, the positive reinforcement box helps her a lot—they used it at school too.’ (Interview 2).

Non-institutional settings (homes of relatives, parks, or playgrounds) provided opportunities for interaction with more diverse peer groups. These contexts fostered less hierarchical social dynamics, allowing children to explore different roles and actions. Unlike institutional settings, participation here was voluntary: choosing to engage or not was itself an expression of will. However, this autonomy was sometimes misinterpreted as opposition or as a symptom of disability, creating tension and undermining the child’s decision-making. As one participant explained: ‘His brother always says, “Let’s go outside and jump.” He’s always encouraging him to do something (…) Sometimes there’s a fight because my younger son says, “Mom, he doesn’t want to go out.” And I tell him, “Go play.” – “I don’t want to,” and then the fight starts.’ (Interview 7)

Despite the developmental potential of these environments, numerous barriers limited participation, including inaccessible play areas, transportation difficulties, and limited support networks. Mothers described avoiding public outings for fear of behavioral incidents, which further restricted their children’s participation.

The incorporation of technology into daily routines helped mitigate some of these spatial barriers by enabling remote peer interaction through video games, mobile phones, or social media. These devices could be used independently or with assistance, depending on the child’s skills. Over time, children developed greater digital competence, often through imitation, as illustrated below: ‘Sometimes he takes my younger son’s phone and pretends to play the same game as his brother, but he doesn’t understand how it works yet. So, he pretends he’s playing, but he’s not really playing.’ (Interview 3)

Access to digital tools also enabled engagement with shared cultural content like memes, cartoons, and games, helping children connect across different social contexts.

Figure 2 presents a summary of the key findings emerging from the interviews.

Figure 2

Continuity of support across participation contexts

Mothers emphasized that a key factor in promoting self-determination and preventing the emergence of BtC lies in the capacity of those interacting with the child to recognize their actions as expressions of will. This recognition allows the child to carry out an action from the initial intention through to the achievement of the goal, in alignment with their own beliefs about agency and control.

This process is supported by the involvement of various human (e.g., professionals and family members) and non-human (e.g., technological devices or assistive tools) actors that enable continuity of action across participation contexts. Skills acquired in one setting can be transferred to others when the strategies used to promote these actions are adaptable. In this way, self-determined behaviors become generalized and consolidated as part of the child’s habitual behavioral repertoire, facilitating engagement in new activities.

This dynamic is evident, for instance, in the coordination between schools and therapeutic institutions regarding behavioral support plans, particularly when families have access to such services. Another relevant example is the active role of mothers as mediators, who incorporate and adapt strategies learned in institutional settings for use at home or in community environments. Their ability to adjust support mechanisms helps sustain the continuity of interventions that promote self-determined behaviors and prevent the occurrence of BtC.

When families face greater barriers to accessing specialized support, or when support networks are insufficient, mothers often act as mediators using their own resources. This can lead to high levels of stress and fatigue, diminishing their capacity to respond effectively to their children’s needs (Grenier-Martin and Rivard 2022). Such constraints not only affect the management of BtC but may also have long-term consequences for the development of more self-determined life trajectories, particularly when these limitations restrict social participation and access to diverse contexts that promote the development of autonomy and agency, such as peer interactions.

An important implication of these findings is that the active participation of families in the provision and coordination of support should be considered a strategic axis in the design of family-centered policies and interventions (Mumbardó-Adam et al. 2023), recognizing their role as co-constructors of environments that foster self-determination. In this regard, parent support networks represent a crucial resource for coping with the demands associated with BtC and for promoting the development of self-determination-related skills. These networks provide not only emotional support but also opportunities to exchange experiences and strategies that strengthen caregiving capacities. However, their presence within the public health system remains limited, and in the private sector they are rarely included in service offerings, despite evidence highlighting their importance in mitigating the social impact of disruptive behaviors (Dew et al. 2019).

Provision of support in Chile

The literature on access to specialized support for people with ID in Chile reveals significant structural limitations, including low service coverage, a shortage of specialists, and long waiting lists (Arango, Aparicio and Tenorio 2018). However, the mothers’ narratives also exposed other major obstacles related to their lived experiences as service users. These include transportation difficulties, limited territorial availability, the absence of support networks that would enable balancing service attendance with household and caregiving responsibilities, and the high cost of private services.

Participants also noted that improved financial conditions do not necessarily guarantee sustained access to professional support. The greater intensity and frequency of interventions required to meet their children’s needs result in significantly higher costs, which may limit or interrupt service provision.

Although this study represents a preliminary exploration and its scope is limited by the small number of interviews and the focus on a specific geographic context, these issues warrant further investigation in future research, particularly regarding the availability of support for individuals with ID compared to those with other developmental conditions. The implementation of Law 21.545 (Gobierno de Chile 2023) has created a significant gap in access to school-based support services in Chile, which are now prioritized to individuals identified with autism, even though it was not the intention of the law.

The evidence gathered suggests the need to re-envision support systems within a framework that incorporates the multiple variables influencing the effective exercise of the rights of persons with disabilities in Chile. This perspective aligns with recent proposals by other scholars (Jorgensen, Nankervis and Chan 2023; Schalock, Luckasson and Shogren 2020).

Actor–network theory

This study employed ANT as a methodological tool to describe and analyze the interactions that children establish with other actors, enabling the development of self-determined behaviors across various participation contexts. This approach allowed self-determination to be conceptualized not as an individual attribute but as a relational and interdependent process (Watson 2012), in which the actions of others can either support or hinder its expression.

From the ANT perspective, the social is not fixed or predetermined but emerges from the interactions among human (e.g., family members and professionals) and non-human (e.g., electronic devices and objects) actors within a dynamic network of relations. This framework made it possible to observe how the environment contributes to the child’s causal agency by identifying components of self-determination, as described in CAT and SDT, as reflected in the mothers’ narratives. Consequently, specific interactional configurations were identified that, depending on the context, enable or restrict the exercise of self-determination and the emergence of BtC (Correa 2023; Tirado Serrano and Domènech i Argemí 2005).

Through ANT, we were able to reconstruct non-linear developmental trajectories in which self-determination is understood as the outcome of the convergence between the child’s actions and those of other actors. This allowed for a detailed mapping of the relational networks shaping the child’s capacity to act at different levels of participation. The study enabled a progressive description from the home, where environmental variables are more limited, to institutional and community environments, where relational complexity increases. ANT facilitated this exploration while honoring the singularity of each interviewee’s experience and avoiding generalizations that could obscure individual differences (Soto 2023).