Date of Award

2020

Document Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

Department

Biology

Abstract

This study is an exploratory, qualitative research study of nonpaid caregivers for advanced cancer patients. Fifteen caregiver participants completed semi-structured interviews. The patients for whom they provided care lived at home and were diagnosed with advanced (stage 3 or 4) cancer. The original site of cancer and involvement in treatment was not important for the study. Research recruitment prioritized caregivers residing in rural settings, knowing these areas often lack resources. During the semi-structured interviews, caregivers discussed their perceived challenges and rewards, discussed their stressors and how they managed stress, and discussed their supports. Caregivers addressed the impact of caregiving on each domain of quality of life (social, physical, emotional/psychological, and spiritual). Caregivers discussed positive and negative impacts of living in a rural area while caregiving. Once the interview questions were addressed, the participants were invited to contribute any closing thoughts they would like to add. Interview data was analyzed to determine codes, themes, and present theory grounded in the data of the caregiver experience. Themes of the study include caregiver multi-faceted experience of loss, medicine as a foreign language, unexpected strength in community, significant impact of the caregiving role on caregiver quality of life, and the balance of forced mindfulness (staying in the moment) versus anticipating grief and loss (being future-oriented). Results indicate that caregiving has significant impacts on caregiver quality of life, which mutually impacts the patient experience and the status of health and wellness of both parties. The results concluded with presentation of the theory, which indicates caregiver use of negative social comparisons to cope with their challenging circumstances in the tone of it could be worse.” This method of coping minimizes the caregivers experience of stress and loss by downplaying the effects of their experiences and level of hardship. It is of note that the caregiver experience of stress and emotional response was nearly always maintained privately from the patient, except in one experience of long-term caregiving (14 years) in a spousal relationship. However, even in this patient caregiver dyad, there was still some protection of information from the caregiver to the patient.

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