Family Caregiver Uplift and Burden: Associations With Aggressive Behavior in Adults With Intellectual Disability

Abstract

The purpose of this study was to investigate the experience of family caregivers caring for adults with intellectual disabilities (ID) who display aggressive behavior in terms of associations with caregiver burden and uplift. The family caregivers of 44 people with ID and aggressive behavior were interviewed using a suite of questionnaires and assessment scales. Data were collected on the personal characteristics of the person with ID and his or her behavior. Outcome measures captured caregivers' uplift and burden. Severity of aggression was the most significant predictor of caregiver burden. Severity of aggression was positively correlated with caregiver burden. Conversely, caregiver uplift was negatively correlated with severity of aggression; however, this association was weaker. Caregiver outcome was not associated with any characteristics of the person with ID apart from presence of a psychiatric disorder. Caregiver burden was significantly greater in those with a comorbid psychiatric disorder. Severity of aggression and presence of a psychiatric disorder may be useful risk factors in predicting caregiver burden. Services should be aware of this link and provide services to caregivers to help mediate the effects of providing care in these circumstances. Caregiver uplift is less associated with severity of aggression and generally high among caregivers.

Keywords:

• aggression
• self-injurious behavior
• family caregivers
• caregiver burden
• caregiver concerns
• adults

ACKNOWLEDGMENTS

We thank the Baily Thomas Charitable Trust, UK for funding the research and thank the people with intellectual disabilities and their caregivers for taking part in the study.