Trauma in people with intellectual and developmental disabilities: reactions of parents and caregivers to research participation.
Parents of trauma-exposed clients with IDD welcome research, so recruit boldly and ethically.
01Research in Context
What this study did
The team asked parents and caregivers of people with IDD one big question: How do you feel about joining trauma research?
They used a short survey. Caregivers rated how well they understood the consent form and how upset (or glad) they felt about being in the study.
What they found
Almost every caregiver said they understood the consent form and felt okay about joining.
The more trauma the family had lived through, the more they valued being in the study. No one dropped out because the topic was too heavy.
How this fits with other research
Ramsden (2024) looked at 13 studies on attachment work for the same families. That review says evidence is thin and mixed, so new data like this survey still matter.
Bhaumik et al. (2009) also used a caregiver survey, but on sex-ed, not trauma. Both papers show caregivers will answer tough questions when you ask respectfully.
Lin et al. (2011) found low support scores for reproductive health. Heinicke et al. (2012) found high support scores for research. Same method, different topic—caregivers step up when the goal is clear.
Why it matters
You can stop worrying that trauma questions will scare families away. Tell parents why the study helps services, keep consent forms plain, and invite them in. More data equals better supports for clients with IDD.
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02At a glance
03Original 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.
Intellectual and developmental disabilities, 2012 · doi:10.1352/1934-9556-50.3.199