Caring Connections: A Grounded Theory Study of the Grief and Bereavement Experiences of Children With Intellectual Disabilities

Children with intellectual disabilities (ID) have been minimally represented in grief research. This grounded theory study aimed to elucidate the grief and bereavement experiences of children with ID from the perspective of their caregivers, and optionally from their child, and to develop a substantive theory to guide developmentally inclusive interventions. Eligible participants were caregivers of a child with ID who was 5-17 years old when they experienced the death of someone significant within the past six months to three years. After purposive sampling through disability organizations, adult caregivers (<i>n</i> = 19) and children (<i>n</i> = 6) participated in semi-structured interviews. Constant comparative analysis led to the Caring Connections theory, which delineates processes related to internal loss experiences and the outward desire to care for others. With clinical implications, this theory highlights that supporting grieving children with ID includes fostering opportunities for caring and connection, which can enhance coping and may mitigate disenfranchised grief.

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Publication Details

Journal
OMEGA - Journal of Death and Dying
Published
2025-10-08
DOI
https://doi.org/10.1177/00302228251384463
Primary Topic
Family and Disability Support Research
Type
article
Field-Weighted Citation Impact
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article

Caring Connections: A Grounded Theory Study of the Grief and Bereavement Experiences of Children With Intellectual Disabilities

Mary Lynn McPherson, Jaime Goldberg, John G. Cagle, Arlen G. Gaines et al.
OMEGA - Journal of Death and Dying
Family and Disability Support Research
article

Caring Connections: A Grounded Theory Study of the Grief and Bereavement Experiences of Children With Intellectual Disabilities

Mary Lynn McPherson, Jaime Goldberg, John G. Cagle, Arlen G. Gaines, Elizabeth McAdams Ducy, Patricia Moyle Wright
article en

Abstract

Children with intellectual disabilities (ID) have been minimally represented in grief research. This grounded theory study aimed to elucidate the grief and bereavement experiences of children with ID from the perspective of their caregivers, and optionally from their child, and to develop a substantive theory to guide developmentally inclusive interventions. Eligible participants were caregivers of a child with ID who was 5-17 years old when they experienced the death of someone significant within the past six months to three years. After purposive sampling through disability organizations, adult caregivers (<i>n</i> = 19) and children (<i>n</i> = 6) participated in semi-structured interviews. Constant comparative analysis led to the Caring Connections theory, which delineates processes related to internal loss experiences and the outward desire to care for others. With clinical implications, this theory highlights that supporting grieving children with ID includes fostering opportunities for caring and connection, which can enhance coping and may mitigate disenfranchised grief.

OMEGA - Journal of Death and Dying
University of Scranton (US), University of Maryland, Baltimore (US), University of Wisconsin–Madison (US), Sonoma State University (US)
Openalex Percentile: Top 60%
Family and Disability Support Research
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