Trauma in People with Intellectual and Developmental Disabilities: Reactions of Parents and Caregivers to Research Participation

Abstract

Generally, studies have revealed that only a minority of people are bothered by participation in research on traumatic stress. Severity of traumatic events and subsequent responses are typically unrelated to negative reactions. We included 386 family members and caregivers (respondents) of people with intellectual and developmental disabilities (focus people). Focus people (ages 4-82) had a wide range of physical and intellectual disabilities, medical and behavioral problems, and exposure to potentially traumatic events. The measures of impact of research participation (based on J. I. Ruzek & D. F. Zatzick's [2000] Reactions to Research Participation Questionnaire [RRPQ]; S. Folkman and R. S. Lazarus's [1986 , 1988 ] Emotional Responses to Participation Scale) showed good psychometric properties. Response to participation was highly skewed toward good understanding of informed consent, valuing participation, and minimal negative reactions. Number of traumatic events was related, positively, to only one RRPQ subscale: Valuing Participation. Implications for research and clinical work are discussed.

Perceptions of Trauma Research with a Sample of At-Risk Youth

“…Studies on the benefits and costs of trauma research now include clinical samples (Carlson et al, 2003;Griffin et al, 2003), medical samples (Newman, Walker, & Cefiand, 1999;Walker et al, 1997), community samples (DePrince & Hebenstreit & DePrince, 2012), and college samples (DePrince & Freyd, 2004;Shorey, Cornelius, & Bell, 2011). This benefit-to-cost pattern also holds for populations viewed as particularly vulnerable, such as children (Chu, DePrince, & Weinzierl, 2008;KassamAdams 8f Newman, 2002, 2005, pregnant women (Schwerdtfeger, 2009;Schwerdtfeger & Nelson Goff, 2008), and individuals with intellectual or developmental disabilities (Scotti et al, 2012). Taken together, the growing body of work suggests that people who disclose their trauma histories as part of research studies generally report positive perceptions of their research experiences.…”

Trauma‐Informed Day Services: An Initial Conceptualization and Preliminary Assessment

“…In addition, TIC acknowledges the likelihood of trauma in the lives of service recipients and service providers (Bloom, ; Harris & Fallot, ). It was previously noted that nearly 80% of individuals with IDD may be exposed to potentially traumatic events (Scotti et al, ) with emerging evidence suggesting similar rates among employed caregivers. For example, Esaki and Larkin () found that 70% of child care workers experienced at least one potentially traumatic event in childhood, approximately 11% higher than had been noted in a population‐based study (i.e., 59.4% of individuals experienced at least one such event; Bynum et al, ).…”

“…For example, it has been noted that individuals with IDD are between 3 and 6 times more likely than persons without IDD to be abused or neglected (Hulbert‐Williams et al, ; Soylu, Alpaslan, Ayaz, Esenyel, & Oruc, ; Spencer et al, ; Sullivan & Knutson, ). Scotti et al () reported that 79% of individuals with IDD were exposed to at least one potentially traumatic event, with individuals exposed to, on average, 2.8 events. Further, the types of events that individuals with IDD experience, such as institutionalization, dependency on caregivers and being physically restrained, are likely uncommon in the non‐IDD population (Hulbert‐Williams et al, ; Wigham et al, ).…”

“…While the use of such techniques and interventions has become increasingly controversial given their potential risks for injuring, traumatizing, or retraumatizing individuals, such practices continue to be used (Williams, ). Similarly, service providers’ failure to screen individuals for traumatic experiences and assess for trauma symptomology has often led to reliance upon traditional interventions (e.g., behavior management) that do not appropriately address trauma‐related behaviors and needs (Scotti et al, ). As such, there is a need for increased sensitivity toward trauma in what and how services are delivered, as well as the policies that govern practice.…”

Suicidal Ideation, Attempts, and Associated Psychosocial Risk and Protective Factors in American Indian Youth and Young Adults

“…Because of the sensitive nature of the survey and the history of research abuses in this population (210), three questions were included at the end of the survey to assess participant reactions to participating, including: feeling upset, thought worth the time, and felt free to skip questions or stop at any time (457). Responses ranged from not at all to a great deal.…”