Susan M. Wilczynski

Risk and Strategic Decision-Making in Developing Evidence-Based Practice Guidelines

Evidence-based practice (EBP) represents an important approach to educating and treating individuals diagnosed with disabilities or disorders. Understanding research findings is the cornerstone of EBP. The methodology of systematic reviews, which involves carefully analyzing research findings, can result a practice guideline that recommends treatments based on the best available evidence. Educators and practitioners will be best positioned to effectively use these guidelines when they recognize both the strengths and limitations of these documents. This article highlights some of the limitations of these documents by reviewing the decisions experts make when they develop practice guidelines. The risks associated with each of the decisions are outlined, with the National Standards Project serving as an example for each decision and resulting risks. The implications of the risks are considered so that educators and practitioners will be better able to evaluate the usefulness of any practice guideline when they select treatments for the children they serve.

Lived Experiences of Parents of Gifted Students With Autism Spectrum Disorder: The Struggle to Find Appropriate Educational Experiences

The purpose of this phenomenological, qualitative study was to illuminate the lived, shared experiences of parents of gifted children diagnosed with autism spectrum disorder. Thirteen parents were interviewed and the interviews were transcribed and qualitatively analyzed. This article specifically examines the parents’ experiences navigating the educational system for their children. All participants described the challenges associated with finding appropriate educational placements for their children due to the children’s unique social and academic needs. Parents recognized the incompatibility between their child’s characteristics and typical educational environments, and this incompatibility required parents to take an active role in designing and finding appropriate educational opportunities. These findings provide insight for school personnel and parents as they develop flexible services for twice-exceptional students.

Chapter 5 – Client Preferences

This is the third chapter in the section on client variables, values, and preferences. Client preferences can help evidence-based practitioners to select from an array of effective treatments. Preference assessments can be conducted to identify materials, activities, and opportunities that are highly preferred by a client and reinforcement-based interventions can be built around these preferences. This chapter reviews less commonly described methods for conducting preference assessments, such as group administration and methods used with infants and toddlers. Choice is another method for incorporating preference into treatment. Clients can regularly express their changing preferences when they are consistently given choices within the context of therapy. Finally, when preference is a natural by-product of a given treatment, it should be given priority. Client preference can be incorporated into the treatment selection process irrespective of the age and developmental functioning level of clients.

Treatment Feasibility and Social Validity

This is the sixth chapter in the section on client variables, values, and preferences. Evidence-based practitioners recognize that a treatment may be supported by many well-controlled studies and all parties may agree it is the ideal treatment, but a treatment cannot be considered appropriate for implementation if there are obstacles to accurate implementation that cannot be overcome. Treatment feasibility may be problematic due to resource constraint and environmental supports, such as lack of training, impact on other family members, barriers to sustainability, etc. Evidence-based practitioners may address problems with feasibility in numerous ways. Brainstorming sessions can resolve obstacles to feasibility. In addition a dual treatment selection process may emerge. Specifically a feasible short-term treatment is immediately implemented while a long-term plan to build systematic capacity for a preferable treatment is developed and activated.

Chapter 11 – Progress Monitoring

This is the second chapter in the section on professional judgment. Progress monitoring is essential for determining whether or not a treatment has produced meaningful outcomes for target clients. Procedures for collecting data and selecting appropriate single-subject research designs that can be used in real-world settings are briefly reviewed. However evidence-based practitioners collect considerably more information than client progress data to determine if an appropriate treatment is in place. Treatment fidelity, quality of adherence, and an implementation plan can all be used to determine if potential problems for the feasibility or sustainability of the treatment may occur. In addition, evidence-based practitioners collect ongoing data regarding target client preference, tolerability, and client satisfaction data in order to have an informed perspective before determining if a treatment should be retained, adapted, or rejected. Strategies for managing conflicting forms of evidence are offered.

Client Repertoire and Behavioral Cusps

This is the second chapter in the section on client variables, values, and preferences. Evidence-based practitioners compare their client’s repertoire to the set of skills needed in order for a treatment to be effective before they select treatments. If the prerequisite skill set is not within a client’s repertoire, the evidence-based practitioner has two options. First the treatment can be eliminated from consideration altogether. Second the evidence-based practitioner can help stakeholder clients (e.g., parents, teacher, direct care staff) devise a plan to develop these skills. Similarly, when an array of treatment options are all effective and viable, evidence-based practitioners select the treatment that could lead to a behavioral cusp. If access to a specific treatment can change clients’ behavior in a way that can increase their access to new environments, this treatment should be given serious consideration.

Other Sources of Evidence

This is the last chapter in the section on best available evidence. Evidence-based practice requires access to evidence. Although systematic reviews represent the least-biased form of evidence, bias can enter the process of systematic reviews so they are not perfect forms of evidence. In addition, real-world clients are often more complicated and live in more complex situations than research participants. Evidence-based practitioners manage this gap between research ideals and reality by examining multiple sources of evidence. This chapter describes the value of using narrative reviews, practice guidelines, scientific principles of human behavior, client history, and current client data as sources of evidence when selecting treatments. The strengths and limitations of each approach are briefly examined.

Chapter 6 – Quality of Life, Generalization, and Social Validity

This is the fourth chapter in the section on client variables, values, and preferences. Social validity reflects whether or not a treatment is viewed as fair and appropriate. A treatment cannot be socially valid if it fails to lead to meaningful outcomes. This chapter examines quality of life and generalization in relation to social validity. Specifically, evidence-based practitioners should prioritize treatments based on the client’s quality of life. In addition, generalization represents a significant problem for individuals with autism spectrum disorder. It is hard to argue that socially meaningful outcomes have resulted from treatment when clients cannot use a new skill or manage their behavior under relevant real-world conditions. In addition to planning for generalization after a treatment is selected, evidence-based practitioners can select treatments that are more likely to lead to generalization of new academic, social communication, and behavioral self-regulation skills.

Initial Selection: Weighing and Integrating Information

This is the first chapter in the section on professional judgment. Evidence-based practitioners begin by gathering the best available evidence, information about relevant client variables, and evaluating target, stakeholder, and leader client values, and preferences. Yet the great challenge is to weigh and integrate these sources of evidence and information in order to select a treatment that is most likely to produce a positive outcome for the client. This chapter describes the six-step evidence-based practice process that results in meaningful outcomes for target clients. The process includes facilitating a discussion among target, stakeholder, and leader clients to initially select the treatment, to test the effectiveness of the treatment and its “goodness of fit” with the client and the culture in which treatment is provided, and finally determining if the treatment should be retained, adapted, or rejected.

Chapter 3 – Client Health

This is the first chapter in the section on client variables, values, and preferences. Prior to recommending treatment, evidence-based practitioners consider a range of client variables. Client health plays an important role in selecting appropriate treatments. A client may lack a skill or show excessive behavior problems that interfere with their capacity to fully benefit from school, home, therapeutic, and/or community environments. These skills and behaviors may be directly or indirectly a result of client health. Medication, medical conditions, comorbidity (cooccurring conditions), biological variables, and mental health are all key features that evidence-based practitioners evaluate before identifying the “right” treatment for a given client. The influence of pain on behavior, particularly in clients who cannot communicate about their pain, must be assessed before treatments can be selected. Similarly, evidence-based practitioners identify how abuse history and seizure activity should influence treatment selection.