Parents’ sensemaking processes in the identification of developmental delays and engagement with early intervention services

Author

Scherr, C.L., Getachew-Smith, H.J., Sudec, L., Brooks, J.J., & Roberts, M.Y. (2020). Parents’ sensemaking processes in the identification of developmental delays and engagement with early intervention services. Social Science & Medicine, 255(C). https://doi.org/10.1016/j.socscimed.2020.112941

Section Snippets

Study design and sample

Following IRB approval at our University, 20 semi-structured in-depth individual interviews were conducted between July 2017 and January 2018. We used a non-probability based purposeful sampling strategy (Patton, 2015) to recruit 50% Black and 50% white participants through our institution’s Early Intervention Research Group (EIRG) registry, posts on the EIRG’s website and social media pages, and flyers distributed to existing network of patients and clinical partners (e.g., pediatric offices,

Sample characteristics

Table 1 summarizes sample characteristics for parents and Table 2 does so with regard to their children.

Qualitative themes based on CSM domains

We initially sought to identify differences between Black and white parents, however, few emerged. The term parents refers to both Black and white parents. Race is only explicitly included in the description when differences were identified. Exemplar quotes include parenthetical information about parents’ race (i.e., BP = Black parent; WP = white parent), but should not be interpreted as a discussion.

This qualitative study used the CSM to understand the process by which Black and white parents’ concerns about their toddler’s development led to EI service uptake. Few meaningful differences emerged between Black and white parents’ mental models. By exploring parents’ narratives, we identified additional nuance in the CSM’s theoretical domains and processes. First, we present theoretical insights, and follow with practical implications.

Conclusions

Early identification of developmental delays during toddlerhood, and timely intervention is essential to improve functional outcomes and reduce need for long-term treatment and the associated long-term costs (Adams and Tapia, 2013). This study provides several directions for future research using the CSM. First, additional explorations of key transitions between stimuli and cognitive and emotional representations and between behavior and adherence are needed. This study suggests that examining.

Introduction

Approximately 12% of toddlers (i.e., age 3 and younger) in the United States have developmental delays, but up to 90% of these are not identified at the youngest ages possible (American Academy of Pediatrics, 2018; Rosenberg et al., 2013). Early identification of toddlers who do not meet key developmental milestones is critical to increase early intervention (EI) service use, and maximize functional outcomes (Adams and Tapia, 2013; American Academy of Pediatrics, 2006). Untreated developmental delays can contribute to early school failure and social and emotional problems (American Academy of Pediatrics, 2006). Efforts to improve early identification of developmental delays have primarily focused on pediatricians (Ertem et al., 2009), including the recommendation that pediatricians routinely elicit parental concerns regarding their child’s development (American Academy of Pediatrics, 2001). Although nearly half of parents have concerns about their child’s development, few parents report their pediatrician elicits their concerns (Adams and Tapia, 2013; Marshall et al., 2015; Woolfenden et al., 2015). Furthermore, studies documented parents are unaware of standard developmental milestones, and often lack the language or empowerment to share concerns about their toddlers’ development with their pediatrician (Adams and Tapia, 2013; Woolfenden et al., 2015).

Racial, ethnic (Valicenti-McDermott et al., 2012), and socio-economic (Fountain et al., 2011; Mazurek et al., 2014; Wittke and Spaulding, 2018) disparities exist in screening and identification of delays, access to care, and participation in EI (Zuckerman et al., 2014). Despite similar developmental delay prevalence (Boyle et al., 2011), African American/Black (Black) children are five times less likely to participate in EI services compared to white children at 24 months (Feinberg et al., 2011). Black parents are also more likely than white parents to report unmet therapy needs (Magnusson and Mistry, 2017). In a study about therapy services for developmental delays, low-income Black mothers reported few meaningful conversations with their child’s pediatrician about developmental concerns or EI services (Magnusson and Mistry, 2017), suggesting a need to further understand differences between Black and white parents’ experience identifying a developmental delay and obtaining EI services.

Many systematic factors, often the result of explicit or implicit racial bias (Chapman et al., 2013; Hall et al., 2015), contribute to these disparities including differences in physician referrals, insurance coverage, trust in health care providers and the health care system, and ability to navigate the system (Rosenberg et al., 2008; Zuckerman et al., 2014). These factors are multifaceted, impact racial minority experience with healthcare in the United States, and may contribute to the development of cognitions and emotions that affect how parents understand developmental delays and navigate the EI evaluation and therapy system. For example, Black parents reported fewer concerns about children’s behavior prior to receiving an autism spectrum disorder (ASD) diagnosis, compared to white parents (Donohue et al., 2017).

Exploratory studies about parents’ experiences identifying a developmental delay or obtaining EI services have focused on knowledge of delays (Magnusson and Mistry, 2017; Marshall et al., 2016), or systemic barriers and facilitators (Marshall et al., 2017). Still, it is well known that information deficit models do not fully capture processes that influence health behavior (Grimshaw et al., 2001; Marteau et al., 2002) compared with behavioral theory (Glanz and Bishop, 2010). Yet, few leveraged behavior change theories to understand parents’ cognitions and internal processes. Many health behavior models like the Health Belief Model or Theory of Planned Behavior view individuals as rational decision makers, neglect dynamic processes, and fail to provide conceptual explanations for behavior (Cameron and Leventhal, 2003; Leventhal et al., 1980). Theories like the Common Sense Model (CSM), which focus on cognitive and emotional models associated with uptake and adherence to behavior change (e.g., EI uptake) can provide additional insight and a more complete explanation of the cognitive processes underlying parental identification of a developmental delay and EI uptake.

The CSM is a widely used health behavior theory that provides a framework for a sense-making process whereby an individual perceives and evaluates a health threat and selects a response (Hagger et al., 2017; Leventhal et al., 1980, 1984). Specifically, the health threat or stimuli (e.g., information or symptoms) generate a threat schema (i.e., mental model) based on cognitions and emotions, which an individual uses to inform coping strategy selection to manage the threat (Leventhal et al., 1992). Both internal (e.g., somatic changes) and external (e.g., comments from others) stimuli serve as cues to a potential health threat, which initiates parallel but interconnected cognitive and emotional processes and generates representations that drive coping strategies and appraisals to monitor coping strategy effectiveness (Diefenbach and Leventhal, 1996; Hale et al., 2007; Leventhal et al., 1992). Past and present informational inputs from the environment, social structures, or experiences influence mental model development and coping strategy selection.

Cognitive representations are comprised of five domains: 1) identity – the label or description of the condition; 2) timeline – whether the condition is acute or chronic; 3) cause – the instigator of the condition (e.g., genetics, contagion, injury); 4) the potential to control or cure the condition; and 5) consequence – the emotional, social, financial impact (Diefenbach and Leventhal, 1996; Leventhal et al., 1980, 1992). Although important to the model, the emotional process of the CSM has received less attention, but includes emotions like fear, worry, and anxiety, and others known to motivate behavior (Cameron and Jago, 2008). Cognitive and emotional representation are thus believed to be significant determinants of health-related behaviors and adherence (Diefenbach and Leventhal, 1996).

Though initially applied to individual beliefs about one’s own illness, the CSM has been used to understand parents’ cognitive and emotional representations of children’s health conditions and pediatric healthcare use (Moran & O’Hara, 2006), including how parents of children with Attention Deficit Hyperactivity Disorder conceptualize and cope with their child’s condition (Wong et al., 2018). Yet, little is known about (1) how parents of toddlers with developmental delays conceptualize their toddler’s condition; and (2) differences between Black and white parents’ CSM in this context. Given late identification and underutilization of EI services, particularly among Black parents, it is crucial to identify processes that may support parents in the identification of delays and EI service uptake.

Although CSM is traditionally used to predict how threat schemas foretell coping, over the last few years, Leventhal and colleagues called for a focus on the dynamic processes that underlie action within the CSM (Leventhal, 2019; Leventhal et al., 2016). Leventhal et al. (2016) suggest, for example, mechanisms that affect self-efficacy, “a well-known predictor of self-management,” may be an appropriate target. To address these calls, research recently has begun to focus on understanding how representations are formed, and the processes that underlie mental models, as doing so will help to inform future research and intervention development (Leventhal, 2019). For example, scholars noted a lack of focus on social processes (DeLongis and Morstead, 2019), despite the importance of social contextual factors (e.g., culture, media influences, conversations with family/friends) in generating the stimuli and mental model (Leventhal et al., 2016). The current study contributes to this new wave of research by using qualitative methods to identify potential mechanistic targets and explore processes that influence parents’ identification of developmental delays and EI service uptake.

Research employing the CSM has largely capitalized on the availability of validated quantitative measures including the Illness Perception Questionnaire (Weinman et al., 1996), the Revised Illness Questionnaire (Moss-Morris et al., 2002), and the Brief Illness Questionnaire (Broadbent et al., 2006). While useful, such methods may oversimplify the processes within the CSM and obfuscate new ways of theorizing (Revenson and Diefenbach, 2019). In particular, methods that allow for greater understanding of emotional content can provide insight to the influence of emotion and the interactions between cognitive and emotional representations (Revenson and Diefenbach, 2019). A qualitative descriptive approach using the CSM to guide the exploration of participants’ narratives may identify additional processes worthy of further investigation (Sandelowski, 2000; Thorne et al., 1997). Consistent with the cognitive models that underpin the CSM, personal narratives, like those elicited through qualitative methods, integrate past and present experiences and perceptions to create the epistemological frameworks and structures from which an individual makes sense of the world (Petraglia, 2007).

Utilizing the CSM as a framework, this qualitative study explored the cognitive and emotional representations of Black and white parents of toddlers with developmental delays who received EI services. The goals of this study were to identify the framework used by parents to engage with EI services, explore differences between Black and white parents’ frameworks, and identify any underlying processes that may prove fruitful for future CSM research. We intentionally explored exceptional cases, which is to say, parents who obtained EI services. By understanding more about exceptional cases, or those who adopt the desired health behavior, we may be better able to predict the processes and inputs required to achieve outcomes of behavior change and adherence (Leventhal et al., 2016).