Perceptions of ADHD Among Diagnosed Children and Their Parents: A Systematic Review Using the Common-Sense Model of Illness Representations

Abstract

Research on children and parents' experiences of ADHD has grown in recent years, attracting attention to their subjective perception of ADHD as a disorder. Theoretical accounts of illness perception suggest that it is multi-dimensional, consisting of at least five core constructs (see the common-sense model of illness representations or CSM: Leventhal et al., in: Rachman (ed) Medical psychology, Pergamon, New York, vol 2, pp 7-30, 1980, in: Baum, Taylor, Singer (eds) Handbook of psychology and health: social psychological aspects of health, Earlbaum, Hillsdale, vol 4, pp 219-252, 1984). We suggest that the application of CSM in children/adolescents with ADHD and their parents may play an important role in understanding their coping behavior, treatment adherence, and emotional well-being. A systematic search identified 101 eligible studies that investigated the perception of ADHD among diagnosed children/adolescents and their parents. In general, these studies support the existence of the multiple facets of illness representations proposed by the CSM in both diagnosed youngsters and parents indicating substantial variability among both parents and youngsters on each of these facets. The comprehensive assessment of the representations of ADHD indicates imbalance attention to the different representations of ADHD in the literature; disproportional research attention has been paid to the perceived effectiveness of treatment (i.e., treatment control dimension) compared to other illness representations (e.g., timeline, consequence, and coherence), despite research showing their relevance to treatment adherence among other implications. The review identifies the limitation of existing relevant research, needed foci for future studies, specific testable hypotheses, and potential clinical implications of the multifaceted representations of ADHD among youngsters and carers alike.

Utilizing the Common-Sense model of illness representations to explore children’s perceptions of, and coping with ADHD

“…The results have showed that children construct beliefs about the identity of their ADHD, the consequences it has for their life, how long it will carry out and about their ability to control it (if such control is needed). Similar to the results of Wong and colleagues (Wong et al, 2018), it was found that there is a broad variation in those beliefs. This variation makes the CSM particularly useful as a theory as it aims to explain and predict variations between individuals who have similar conditions (Petrie et al, 2008).…”

“…Wong and colleagues (Wong, Hawes, Clarke, Kohn, & Dar-Nimrod, 2018) have suggested that the model may help us to understand psychosocial outcomes of ADHD in children. In a systematic review of qualitative and quantitative studies on children's perceptions of their ADHD, the researchers categorized the results of those studies according to the CSM dimensions in order to explore characteristics and possible implications of those perceptions.…”

“…The researchers have found heterogeneous views regarding children's beliefs on what the symptoms of ADHD are, the duration of the disorder, the causes for it, as well as their perceived control and the consequences it has for their lives. However, even if the researchers concluded that perceptions of ADHD among children have been captured overall by the dimensions suggested by the CSM, the limited number of studies may not capture the richness of those representations and their implications (Wong et al, 2018).…”

Identity Formation in Adolescents with Concentration Problems, High Levels of Activity or Impulsiveness: A Pragmatic Qualitative Study

“…Symptoms related to ADHD may affect individuals throughout their lifespan, due to complex genetic and neurobiological factors that hamper self-regulation (Tarver, Daley, & Sayal, 2014). A recent review on perceptions of symptoms related to ADHD calls for research that examines the potential implications of children's recognition of their symptoms for their psychological well-being (Wong et al, 2018). The present study represents a response to this request by exploring perceived identity, friendship and well-being in a group of students in which some had an ADHD diagnosis and others did not.…”

The premise, promise and disillusion of the ADHD categorisation – family narrative about the child’s broken school trajectory

“…It is mobilized to absolve cultural blame of what may be seen as poor parenting, since asserting that a child "suffers" from a neurobiological disorder is not as delicate a matter as asserting that the child manifests unwanted ADHD-like symptoms in response to an unsteady home life (e.g., Frigerio and Montali 2016;Wong et al 2018). Thus, for parents, an ADHD diagnosis functions as a means to normalize their child and themselves, establish their moral status as competent educators and receive emotional reprieve from guilt (Frigerio and Montali 2016;Schubert et al 2009;Singh 2011;Wong et al 2018). However, receiving an ADHD diagnosis does not necessarily remove the risk of experiencing stigma.…”