DOI
https://doi.org/10.25772/BQ3Z-9040
Author ORCID Identifier
https://orcid.org/0000-0002-3974-634X
Defense Date
2023
Document Type
Dissertation
Degree Name
Doctor of Philosophy
Department
Psychology
First Advisor
Ashlee Loughan, PhD
Second Advisor
Bruce Rybarczyk, PhD
Third Advisor
Jared Keeley, PhD
Fourth Advisor
Suzanne Mazzeo, PhD
Fifth Advisor
Gary Rodin, MD
Abstract
The field of psychosocial oncology seeks to improve the quality of life of patients and families affected by cancer. This task becomes increasingly important when there are limited, non-curative treatment options, a high probability of recurrence, and rapid functional decline, such as in the case of a malignant glioma (MG). Indeed, the diagnosis of a MG is associated with negative sequalae that often translates to higher caregiver burden. Caregivers—who must manage the functional decline of the patient, changes within the family, and a complicated medical system—often feel overwhelmed, isolated, and ill-equipped to handle these myriad responsibilities. While they also report significant depression and anxiety, caregivers specifically endorse death distress (i.e., fear, despair, or preoccupation with the patient’s inevitable mortality). Few evidenced-based interventions exist for ameliorating caregiver psychological distress, despite their stated desire for increased professional support., and none targets death distress in caregivers. Managing Cancer and Living Meaningfully (CALM) is a brief, evidence-based, supportive-expressive psychotherapy developed to address the practical and profound issues associated with advanced cancer and may benefit caregivers’ death distress. However, the suitability of CALM has yet to be evaluated in caregivers specifically. Therefore, the overarching purpose of the current study was to evaluate the suitability of CALM in caregivers of patients diagnosed with MG by collecting the foundational data necessary to enhance the intervention to meet the unique needs of this population. To achieve this goal, the current study recruited 22 bereaved caregivers to complete a focus group and subsequent questionnaires. During the focus groups, caregivers learned about the standard CALM intervention and provided feedback/recommendations to improve its suitability, feasibility, and acceptability. Their responses were qualitatively analyzed by a team of coders using thematic, deductive, latent analysis (Kappa = 0.86). The results suggest that the CALM intervention is highly relevant to the caregiving experience and might benefit caregivers emotionally, make them feel more prepared/effective, improve their communication with the patient, and provide a unique opportunity to receive specialized care specific to neuro-oncology. Potential hurdles for caregivers' participation included not having sufficient time and energy, not feeling emotionally ready, fearing they would burden the patient with their emotionality, and believing their loved one would not be emotionally or cognitively capable to participate. Participants also provided recommendations for additional content areas (e.g., caregiver burden and bereavement), how to introduce services, when to initiate treatment, when to participate as an individual versus as a dyad, and how to address logistical concerns. Although CALM might be only one of many necessary interventions to support caregivers’ needs, participants’ feedback was largely positive. Their recommendations will be valuable in developing a final, optimized CALM protocol that addresses the needs of the forgotten patient in cancer care: the caregiver.
Rights
© Kelcie D. Willis
Is Part Of
VCU University Archives
Is Part Of
VCU Theses and Dissertations
Date of Submission
5-10-2023