Self-Reported Guilt Among Adult Siblings of People With Intellectual and Developmental Disabilities.
Most adult siblings of people with IDD carry hidden guilt—ask about it before it drags down the whole family.
01Research in Context
What this study did
Shivers (2019) sent a survey to adult brothers and sisters of people with intellectual or developmental disabilities.
The survey asked how much guilt they felt about their sibling. It also asked about their mood, their bond with their sibling, and their general well-being.
What they found
Over half of the siblings said they felt more guilt than most people.
Those who felt guiltier also said their sibling bond was weaker, they felt more depressed, and life felt harder.
How this fits with other research
Griffith et al. (2012) asked the same group who would likely become the future caregiver. They found women who live close and feel close are the ones who step up.
Huang et al. (2014) looked at parents, not siblings. They showed that when adults with ID sleep poorly, their parents grow depressed.
Together the three papers draw a family circle: the person with ID ages, the parent burns out, and the sibling feels guilty about maybe taking over.
de Jonge et al. (2025) add that caregiver mood is tied to simple, checkable things like grip strength, so quick screens can catch trouble early.
Why it matters
If you write behavior plans or hold team meetings, add one question: “How are you feeling about your role?” When guilt shows up, link the sibling to a support group or respite before depression sets in. A five-minute screen can save years of strain.
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02At a glance
03Original abstract
As more siblings become responsible for their aging brothers and sisters with intellectual and developmental disabilities, it becomes increasingly important to understand these siblings' emotional needs, including potential negative emotions such as guilt. This study examined the presence and correlates of self-reported guilt among 1,021 adult siblings of people with intellectual and developmental disabilities. Respondents completed the Adult Sibling Questionnaire, a national survey examining characteristics of adult health, depression, and feelings of guilt. Over 50% of siblings reported feeling increased guilt. Siblings who experienced increased guilt (versus those who did not) experienced less close sibling relationships, more depressive symptoms, and lower levels of well-being. Siblings experiencing more guilt also had brothers/sisters with more severe emotional/behavioral problems.
American journal on intellectual and developmental disabilities, 2019 · doi:10.1352/1944-7558-124.5.470