Attention Deficit Hyperactivity Disorder (ADHD) is the most common neurodevelopmental condition of childhood with a prevalence rate of 5 to 11% in the United States (Centers for Disease Control and Prevention [CDC], 2015). Family, especially caregivers, are considered an important and integral aspect to the care, management, and well-being of children with ADHD (Bussing & Lall, 2010; Cunningham, 2007; Davis, Claudiu, Palinkas, Wong, & Leslie, 2012; DeMarle, Denk, & Ernsthausen, 2003; Dishion & Stormshak, 2007). The literature suggests that the behavioral management by families is a key determinant in treatment outcomes (Bussing & Gary, 2001). In fact, prior research has shown greater improvement in childhood ADHD outcomes with active family engagement and participatory collaboration between health care providers and family caregivers as compared to children without strong family involvement (Power, Soffer, Cassano, Tresco, & Mautone, 2011). In American societies, however, major health disparities exist in ADHD symptom recognition, diagnostic rates, treatment acceptability, and service use as a result of a myriad of socioecological influences, especially for children from diverse racial and ethnic backgrounds (Eiraldi, Mazzuca, Clarke, & Power, 2006). Despite this knowledge, there is a paucity of research on: 1.) how caregivers from ethnically diverse families view ADHD, and 2.) how their views influence the behavioral management of childhood ADHD and subsequent outcomes, including children’s level of functional impairment. Using socio-ecological theory to underscore child, family, school, healthcare, and community level factors, the purpose of this study is to understand how ethnically diverse caregivers manage childhood ADHD in their everyday lives and how family management factors influence children’s level of functional impairment.
Methods:
Using an embedded concurrent nested design, the proposed research is a mixed methods study independently analyzing and then, integrating cross-sectional qualitative (n=50) and quantitative (n=50) data from ethnically diverse caregivers of children with ADHD. Participants are caregivers of children ages 5 to 12 years old with ADHD who live at least 50% of the time in the same household as their child. An eligible caregiver for this study is a biological or adoptive parent, legal guardian, grandparent, or family member, who views him or herself as assuming major responsibility for their child’s care and lives in a primary residence within the city of interest. In this study, adequate representation of caregiver participants from different racial and ethnic backgrounds is ensured by using a stratified sampling plan using U.S. census data. Eligible and enrolled caregivers participate in a 60-90 minute in-person interview to complete surveys, including a demographic questionnaire, NICHQ Vanderbilt ADHD Assessment Scale, Family Management Measure (FaMM), and Impairment Rating Scale (IRS), and participate in a semi-structured interview with the lead investigator of the study. Guided by the Family Management Framework, caregiver interviews focus on key family management factors, such as the child’s daily life, condition management ability, condition management effort, and view of condition impact, and the barriers and facilitators for each family management factor. This research is approved by the Institutional Review Board within the academic and health care institution in which the study takes place. Caregivers who complete the study receive a $40 Visa gift card, binder of ADHD information and resources, and thank you card for their participation.
Results:
After data collection and analysis is complete, the study findings will answer the following specific aims: 1) Qualitative:to explore how ethnically diverse caregivers manage ADHD in their everyday lives and understand the barriers and facilitators of family management; 2) Quantitative:to examine how child characteristics, family management factors, and caregiver and environmental characteristics influence children’s level of functional impairment; and 3) Mixed-Methods: to integrate findings to explicate complementary themes and family management factors that influence the functional impairment of children with ADHD. Measurements are empirically validated and reliable instruments used in pediatric research. Proposed analytic techniques are described including content analysis, descriptive and inferential statistics, and data integration.
Conclusion:
By identifying the most salient family management factors that influence higher and lower levels of children’s functional impairment, this study extends previous research on family management and ADHD in diverse populations and builds upon existing knowledge about cultural and family perspectives of children with ADHD. Within the conference theme of culturally-diverse health practices, this research provides transformative knowledge about how families understand and manage childhood ADHD within different cultural contexts and provides a launching point for future nursing research and implications for practice and policy. The knowledge gained from the study may lead into a program of research that aims to develop or adapt family-based interventions for culturally and ethnically diverse children with ADHD. Pediatric and mental health registered nurses and advanced practice nurses are at the forefront of implementing changes within nursing practice and nursing education regarding family and cultural perspectives, which may improve patient care outcomes for children with ADHD. Additionally, nurses are strong advocates for their patients, families, and communities, which can influence local, national, and international policy and decision-makers regarding the access, care, and services for childhood ADHD. Study limitations, methodological considerations, and final thoughts are addressed at the conclusion of this presentation.