Abstract
Speech and language impairment (SLI) or developmental language disorder (DLD) is highly likely to affect children’s well-being. Children with SLI/DLD are much more likely than typically developing children to have academic and social learning difficulties and to experience mental health issues (anxiety and depression; Feeney et al., 2012; McGregor, 2020; St. Clair et al., 2011). However, not all children with speech and language disorders experience negative outcomes. Some have a better sense of well-being and appear more resilient in the face of adversity. Researchers reported that children defined well-being in terms of feeling good about one’s self, the absence of psychological distress, the presence of positive affective states (e.g., happiness and contentment), and integrating sadness with happiness (Fattore et al., 2006). Resilience is defined as a process of adaptation when exposed to adverse conditions and has been conceptualized in terms of risk and protective factors (Ungar, 2015). Resilience is determined both by the individual’s capacity and by the capacity of their social context (e.g., home, school, and social contexts). This social conceptualization of resilience considers risk factors to be at both the individual level and the societal level (Thomas, 2004). Within a social model of disability framework, risks to the well-being of children with SLI/DLD may arise from a range of factors, such as potential negative feelings associated with having a communication disability and difficulties related to social inclusion. Because children can have positive outcomes despite adversity, it is important to identify protective factors that help children to overcome adversity.
The authors note that research about quality of life in children with SLI/DLD focuses on individual factors rather than social and environmental factors and tells us little about how children cope with potential stressors (de Chavez et al., 2005). Article 12 of the United Nations Convention on the Rights of the Child (United Nations, 1989) states that children have the right to express their views on all matters affecting their lives, in accordance with their age and maturity. Therefore, researchers should listen to children’s own perspectives and respect children’s perspectives as valid. In this study, the authors interviewed children to explore the emotional tone of stories about their experiences to gain insights into the children’s sense of identity and potential protective strategies they employed to maintain a positive self-identity. The researchers sought to address the following:
How children with speech and language disorders talk about their everyday experiences.
What children’s evaluations suggest about potential risks to their well-being and protective strategies they employ that promote resilience.
Participants
Participants in this study were between 9 and 12 years of age and met the criteria for specific language disorder. Their nonverbal ability was in the average or above-average range, and they had a score of 2 SDs below the norm in one or more areas on speech or language tests. Children were either currently attending or had attended speech-language therapy in the past 2 years. Seven girls and four boys were interviewed 5 or 6 times.
Procedures
The first author of this article, an experienced speech-language pathologist and researcher who did not know any of the participants, conducted semi-structured interviews with the children, which typically lasted between 45 min and 1 hr. A flexible topic guide was used that included open-ended questions about events, happenings, and relationships in different contexts, such as home, school, and leisure. A range of techniques were used to generate narratives and to probe for further information when the responses were short or vague. For example, the researcher introduced a topic by asking broad grand tour questions (e.g., “Can you tell me about your favorite sports?”), which were followed with more specific and focused mini-tour questions (e.g., “Can you tell me about a game that you played in?”). The researcher used active listening techniques, restating and summarizing what the child had said, as well as encouraging extensions of the topic (e. g., “Can you tell me about another time that you played a game of soccer?”). The researcher also encouraged the children to keep the conversation going by responding with “uh huh,” “really,” “what happened next,” nodding, and eye contact. Personal photographs were also used to support children to remember events because there is evidence to suggest that children with language disorder may have difficulty producing autobiographical memories without scaffolding
All interviews were transcribed and the transcriptions entered into QSR NVivo 8 (http://www.qsrinternational.com), a computerized qualitative research program that facilitates analysis of narrative data. Each of the children’s stories was coded for content under topic headings explored in the interviews (e.g., stories about family and peers in school and leisure contexts). First, the plot structure in each of the stories was analyzed and stories were categorized as progressive narratives, which had positive outcomes; stable narratives, which represented a status quo where there was no change in the situation; and regressive narratives, which reflected a deterioration in circumstances. Second, each of these stories was coded for evaluative devices (emotion words, causal connectives, prosodic emphasis, negatives) and agency markers. Agency is concerned with presentations of self as the passive recipient of the influence of others (such as parents or teachers) or as an agentic self exerting control over the environment The stories were then assigned to categories of positive or negative evaluations within each case and, then, across cases. In the next phase, the data were reviewed and subthemes were formed under the two broad themes of potential risks to well-being and potential protective strategies.
Results
Two main themes relating to well-being were identified: potential risks to well-being and potential protective strategies. Under the theme of potential risks to well-being, there were three subthemes that reflected negative feelings: communication impairment and disability, difficulties with relationships, and concern about academic achievement. Under the theme of potential protective strategies, three subthemes that reflected positive feelings were identified: hope, agency, and positive relationships.
The plot structure in the majority of the children’s narratives could be characterized as progressive because the situation had changed for the better. There were also some stable plots, and one regressive plot was identified, in which situations became worse. When some children talked about what could be considered by adults as negative experiences in the past (e.g., experiences of bullying), their evaluations had changed over time and were now positive because the problem had resolved. Therefore, the term potential risks to well-being was used to describe one of the overall themes because, although the problem had now resolved, it could have had a negative impact on well-being at the time. The term potential protective factors was also used because the researchers identified these factors as protective rather than the children.
Potential Risks to Well-Being
Communication impairment and disability
Eight children talked about their talking when the topic was brought up by the researcher, whereas three talked about their talking a few times or not at all. Four of the children appeared concerned about their communication impairments, one child was uncertain about whether or not she had a communication impairment, one child appeared to avoid the topic, and five talked about their communication impairment in a neutral way.
The children conceptualized communication impairment and disability in different ways, with some talking about their own intrinsic difficulties and others talking about contexts where others could not understand them. The authors used the term impairment to refer to the difficulties the children had in talking, whereas they used the term disability to refer to social barriers, such as others not understanding the children. In describing their communication impairments, the children used words such as difficulties with pronunciation of words, speech, just cannot think, voice, talk, forget, hard, cannot say the words, and get mixed up. Many of the children also used terms such as something wrong, right, and properly when they spoke about their talking, which suggested an awareness of the construct of normality. Some used evaluative devices, such as intensifiers and adjectives, to represent how frustrating and difficult talking was for them. Two children used temporal markers to distance themselves from what their talking was like in the past. For example, one child talked about rehearsing what he wanted to say, getting mixed up, and having difficulty thinking. He used the compulsion verb “have to” when he had to start over again, which may suggest frustration. One child attributed a communication breakdown both to his own impairment (e.g., “really hard to say it”) and to others not understanding him. He expressed feelings of annoyance and sadness about this.
Difficulties with relationships
Eight children evaluated relationships with others in negative ways; they talked about conflict with parents, siblings, and teachers and difficulties with peer relationships. Conflicts with parents and teachers often involved restrictions in autonomy, such as not being allowed to do things or go to places, “having to” follow rules, and getting into trouble when the children perceived that they were wrongly accused of some wrongdoing. Four children also talked about conflict with siblings. Children gave differing responses regarding peer relationships. Three reported they had lots of friends, three reported they had some friends, and four clearly wanted more friendship. Four children experienced verbal bullying, such as name-calling, and three physical bullying. Two children reported feelings of frustration, loneliness, upset, and exclusion.
It is possible that some children had difficulties with peer relationships because they positioned themselves in passive roles in relation to peers or on the sidelines of peer groups. They may show indecision regarding entering peer groups and joining in play. In a study of the playground social behaviors of typically developing children and those with language disorder, the children with language disorder demonstrated more withdrawal behaviors than their typically developing peers (Fujiki et al., 2001).
Concern about academic achievement
Nine of the children were concerned about academic achievement and their future in education. They reported that some aspects of the schoolwork were difficult. Three children expressed worries about secondary school and asked if it was necessary to go to college for certain jobs, and how many years would be required. Three were positive in their evaluations of their experiences in a specialized language class, three were ambivalent, and three disliked it. Their criticisms included the few children in the class (they would have liked more children to talk to), travel to the class, being associated with other children with special needs, and experiences of bullying incidents. Three children found the workload in their general education classes challenging. Four children had mixed feelings regarding receiving help from a resource teacher in their mainstream classes. Two downplayed the support, explaining they were not the only ones getting extra help. Two disliked the resource teacher’s assistance in class because it singled them out from peers.
Potential Protective Strategies
Three subthemes were identified as protective factors for well-being and resilience: hope, agency, and positive relationships.
Hope
Although the children were negotiating potentially difficult situations (e.g., sibling rivalry, bullying, and challenges with academic work), many evaluated their experiences in positive ways. The predominant plot structure in many of the narratives could be characterized as progressive with positive outcomes—problems were lessened or resolved, or positive possibilities were imagined for the future. One child specifically stated, “you have to keep your hopes up and it will improve.”
Agency
Agency is the quality that enables a person to initiate intentional action to achieve goals or the power persons have to affect their own lives. Some children demonstrated agency in their narratives, giving examples in which they exhibited control over their environment and were active agents in their narratives. For example, in relation to academic work, three children demonstrated self-efficacy, stating that they could do their work even when it was difficult. Eight children presented themselves as agents in peer relationships. For example, one child described how she presented herself in an active role by using direct speech to initiate interaction with a peer in basketball and made a friend. One child demonstrated agency when he explained how he dealt with a negative experience with peers who wanted to exclude him from a game because they did not think he was a good player. He explained how he proved them wrong by showing them he was a good player. In relation to speech and language skills, three children demonstrated agency using a range of problem-solving strategies to be understood, such as repeating the word, saying it louder, drawing it, writing it down, and spelling the word, and they used metacognitive strategies, such as rehearsing the words, thinking first, and deliberately using shorter sentences.
Several children displayed agency when talking about ways they dealt with bullying, for example, telling someone in authority, ignoring them, dealing with the bullies themselves by fighting back or trying to understand the bully’s motives, or having friends help them.
Positive relationships
Children with speech and language disorders may be at higher risk of difficulties with peer relationships because of factors related to both child and social acceptance by peers. For example, there is some evidence to suggest that children with language disorders may have difficulties with social cognition, which may impact peer relationships (Andrés-Roqueta et al., 2016; Bakopoulou & Dockrell, 2016). Although some children talked about conflicts in relationships, all children described having positive relationships with their families, peers, and pets. These positive relationships provided the children with opportunities to demonstrate their abilities, which were recognized and affirmed by others. In some instances, they served as a buffer against bullies because friends supported and defended children when they were victimized.
The findings of this study are consistent with a social model of disability (Thomas, 2004) that includes three dimensions: impairment effects, barriers to doing, and barriers to being which involves people with disabilities feeling lesser by the words or actions of nondisabled people. In this study, impairment effects could be difficulty saying words; barriers to doing were exclusion and frustration when the children were not understood by others (barriers to doing); and barriers to being involved internalizing negative evaluations by others (barriers to being).
Implications
Much of the published literature on children with SLI/DLD has focused on their deficits. Little research has been framed within the social model framework or with a focus on resilience in this cohort of children. Therefore, it is important to understand the lived experiences of children, both positive and negative, across a range of contexts with different people to complement what is already known from quality-of-life studies. This understanding has the potential to inform speech and language pathology assessment and intervention. It is important that coping and protective strategies, at both an individual and social network level, can be identified and that there is a move toward a strengths-based approach to serving children and families.
It is important that children at risk in relation to well-being can be identified so that supports can be put in place as early as possible to reduce potential long-term effects. This requires a deeper understanding of the everyday experiences and coping strategies used by children with speech and language disorders from their own perspectives. These data could shape the support that could be offered to children and families.