The Grief and Bereavement Experiences of Children with Intellectual Disabilities
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Gaines, Arlen
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Abstract
Overlooked in grief research, children with intellectual disabilities (ID) have cognitive and developmental differences that may impact their processing and coping after the death of a significant person in their lives. This thesis provides a cohesive body of work that furthers the evidence base related to the grief and bereavement experiences of children with ID. First, a narrative review explored the limited literature related to grieving children with developmental disabilities. Themes from this review informed the second manuscript, which examined measurement tools for the concept of death understanding in bereaved teens with ID. These papers highlighted gaps in the extant literature, including the lack of the family perspective and a guiding grief theory. Therefore, the purpose of the original research was to elucidate the grief and bereavement experiences of children with ID following the death of a significant person in their lives and to develop a substantive theory to guide developmentally informed interventions. This study used interpretive grounded theory methodology to guide the approach and analysis. Eligible participants were caregivers of a child with ID who was 5-17 years old when they experienced the death of someone in their life within the past 6 months to 3 years. Caregiver participants could optionally include their child to include the voices of those being studied. After purposive sampling, caregiver participants (n=19) and children (n=6) participated in semi-structured interviews. Caregiver participants, largely parents, resided in 15 states, ranged from 38-58 years (M=47.1, SD=5.6), were female (100%), and represented children with a range of conditions who were 57.9% female, 42.1% male, and ages 5-17 years at the time of the loss (M=11.0, SD=3.6). This research resulted in the substantive theory of Caring Connections, an explanatory model of the grief and bereavement experiences of children with ID. Categories in the model include how children with ID understand and experience loss, maintain connections with the deceased, care for others in their grief, and cope through the familiarity of the known support system. With practical implications, the data suggest that enhancing coping for grieving children with ID includes facilitating caring connections and inclusion in the loss experience.
