Date of Conferral

8-9-2024

Date of Award

August 2024

Degree

Ph.D.

School

Counselor Education and Supervision

Advisor

Jade Letourneau

Abstract

Knowledge of the impending death of a loved one has been connected with experiences of anticipatory grief. Specific grief experiences such as caring for a parent with dementia and caring for a child with cancer have been explored. Other rarely occurring anticipatory grief experiences have yet to be explored. The occurrence of Cockayne syndrome (CS) is 2.7 births in 1,000,000 worldwide. CS caregivers begin grieving the moment they learn of their child’s diagnosis, and counseling professionals are ill prepared to counsel the bereaved in even the more typical post death situations. Therefore, this qualitative, narrative study asked the question: what are the anticipatory grief narratives of caregivers of children with CS? Narrative data analysis was used to focus on content, storytelling constructs, and story meanings. Results found commonly occurring themes such as: “we change our entire lives; we advocate for medical assistance; we love and live in the present; we experience pain; and we help others.” CS caregivers shared stories of emotional pain and personal growth. Similarly, participants expressed strong emotions during storytelling but insisted that they continue their interviews. Additionally, patterns across interviews indicated secure attachment to CS children and withdrawal from others at various times throughout the anticipatory grief journey. Counselor educators and supervisors may promote positive social change by encouraging shared unique anticipatory grief experiences with developing counselors to ensure clients are properly supported as they navigate life changes, caregiving, and the continued awareness of current and future losses.

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