Date of Award


Document Type


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PHD - Doctor of Philosophy




Recent federal rulings have led to an increasing population of individuals with disabilities receiving support services from paid caregivers in their communities rather than in institutions. Paid caregivers are strangers who enter an individual's life and often spend prolonged periods of time in a one to one relationship with an individual. The dynamics between an individual and a paid caregiver are quite different than those between healthcare workers and patients in institutional settings or between an individual and a family caregiver. Constructivist Grounded Theory methodology was used to explore the perceptions of individuals with brain injury and their paid caregivers within Connecticut's Acquired Brain Injury Medicaid Waiver program. Thirty-four interviews were conducted with eight participants over a six-month period. The interviews included two in-depth semi-structured interviews with each participant and, in between these interviews, short phone interviews using an adapted Ecological Momentary Assessment method. Based on the study findings a model was developed which represents the factors and perceptions that influenced the day-to-day interactions between individuals with a brain injury and their paid caregivers. Individuals with brain injury and their paid caregivers had differing conceptualizations of brain injury and incongruent views of the paid caregiver's role. These differences, along with power imbalances at times led to conflict within the relationship however typically the respect and fondness between the dyad neutralized these issues. the medical model significantly influenced the beliefs of both the individuals with a brain injury and their paid caregivers. The core category that integrated all parts of the model was learning understood as an interactive process between the individual with brain injury, the paid caregiver, and the broader sociocultural community.



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