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| Promoting Caregiver Involvement in Research and Exploring Perspectives on Barriers to Caregiver Adherence to Behavioral Recommendations |
| Sunday, May 25, 2025 |
| 10:00 AM–10:50 AM |
| Marriott Marquis, M4 Level, Archives |
| Area: DDA/AUT; Domain: Applied Research |
| Chair: Sacha T. Pence (Stakeholder Partnership for Adherence Research and Collaboration) |
| CE Instructor: Sacha T. Pence, Ph.D. |
| Abstract: Individuals with intellectual and developmental disabilities (IDD) who engage in several challenging behavior often require intensive services to help address and manage their behavioral needs. A key factor in long-term positive outcomes for individuals with IDDs and challenging behavior is caregiver adherence to behavioral recommendations following intensive services. This symposium will discuss the importance of actively engaging caregivers at different levels in our research, including as members of the research team. The symposium will review a model to evaluate research questions that directly involve caregivers who have children with IDDs and severe problem behavior. The symposium will discuss factors that can impact caregiver adherence to behavioral recommendations by summarizing common themes reported through interviews with professionals and caregivers. The symposium will also discuss data collected on caregivers’ views of their behavioral recommendations as well as the extent to which professionals are monitoring caregiver adherence. The symposium will discuss areas of future research on caregiver adherence. |
| Instruction Level: Advanced |
| Keyword(s): behavioral interventions, caregiver adherence, caregiver perspectives, severe behavior |
| Target Audience: Audience members should be familiar with interventions to address severe problem behavior (e.g., FCT, DRO, DRA, schedule thinning). Audience members should be familiar with procedures to train caregivers (e.g., behavior skills training, in-situ feedback, coaching). |
Learning Objectives: 1. Discuss at least three ways to incorporate caregivers into research.
2. Summarize common themes on barriers to caregiver adherence.
3. Describe potential mitigation strategies to address barriers to caregiver adherence.
4. Define adherence. |
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| Engaging Caregivers to Conduct Patient-Centered Research |
| SACHA T. PENCE (Stakeholder Partnership for Adherence Research and Collaboration), Katie Brown (Utah State University), Maria Diaz-Myers (Stakeholder Partnership for Adherence Research and Collaboration; Solidarity Parent to Parent), Jim Corbin (Stakeholder Partnership for Adherence Research and Collaboration) |
| Abstract: Creating sustainable behavioral health outcomes for individuals with intellectual and developmental disabilities (IDD) who engage in severe challenging behavior is important. To achieve this, it is important to consider the perspectives of caregivers of individuals with IDDs who balance caregiving challenges, responsibilities in their everyday life, and implementation of behavior interventions in the home and community. Unfortunately, caregivers and patients in the IDD community have not historically been incorporated and shared in the development and identification of research priorities or implementation of research. This is problematic given engaging stakeholders (e.g., professionals, caregivers) to inform patient-centered research can result in greater understanding of the area of study and lead to the development of higher quality research focused that is most relevant for those in the IDD community. We outline a method our research team has used to successfully engage stakeholders in the IDD community at various levels in the research process. We share data on stakeholders’ willingness and interest to participant in patient-centered research, satisfaction following key events (e.g., trainings, activities), and resources on how researchers can support and engage caregivers’ involvement in research in the IDD community. |
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| Exploring Behavior-Analytic Professionals Perspectives on Barriers to Caregiver Adherence |
| ALYSSA HURD (Utah State University), Katie Brown (Utah State University), Sacha T. Pence (Stakeholder Partnership for Adherence Research and Collaboration), Abby Lavin (Utah State University) |
| Abstract: Caregiver adherence with behavioral recommendations is necessary to achieve positive outcomes for individuals with intellectual and developmental disabilities who engage in severe challenging behavior. Several functional (related to the behavioral recommendations) and contextual (related to the environment) variables may impact caregiver adherence. The purpose of the current study was to gain insight into the variables that can impact caregiver adherence from the perspective of behavior-analytic professionals. Individual interviews were conducted with 24 professionals. Professionals reported that caregiver adherence was impacted by a number of functional variables (e.g., ongoing professional support, treatment alignment, treatment procedures and complexity) and contextual variables (e.g., social support, caregiver mental and physical health, social-economic status). Professionals provided their perspectives on how to promote caregiver adherence. We also gathered data on the extent to which professionals do or do not monitor adherence and strategies to monitor adherence (e.g., verbal report, data-collection systems). The presentation will discuss how these insights can help inform areas of future research on caregiver adherence. |
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An Examination of Caregivers’ Perspectives on Barriers to Adherence With Behavioral Recommendations |
| SHARRUKINA TAMRAZI (Western Michigan University), Sacha T. Pence (Stakeholder Partnership for Adherence Research and Collaboration), Katie Brown (Utah State University), Alyssa Hurd (Utah State University) |
| Abstract: Caregiver adherence with behavioral recommendations is vital to long-term positive outcomes for their children with intellectual and developmental disabilities (IDD) and severe challenging behavior. Several variables may impact caregiver adherence, including factors related to the behavioral recommendations (functional variables) and the environmental (contextual variables). The purpose of the current study was to explore caregivers’ perspectives on behavioral recommendations and the variables that can impact their ability to adhere to behavioral recommendations. Individual interviews were conducted with 16 parents of children with IDD and severe challenging behavior. Caregivers discussed the extent to which they do or do not implement behavioral recommendations. Caregivers reported that adherence to behavioral recommendations was impacted by a number of variables related to the recommendations (e.g., treatment procedures and complexity, access to ongoing services) and their personal life (e.g., family and work responsibilities, social supports). We collected data on the caregivers’ reports of the feasibility of the recommendations, the extent to which they thought the recommendations changed their child’s behavior, and if the recommendations aligned with their cultural and community beliefs. The presentation will summarize common themes across caregiver interviews and provide suggestions on areas of future research. |
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