Date of Submission

2009

Degree Type

Dissertation

Degree Name

Doctor of Psychology (PsyD)

Department

Psychology

Department Chair

Robert A. DiTomasso, Ph.D., ABPP

First Advisor

Stephanie Felgoise, Ph.D., Chairperson

Second Advisor

Bruce Zahn, Ed.D., ABPP

Third Advisor

Zach Simmons, M.D.

Abstract

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disorder that results in degeneration of motor neurons of the cerebral cortex, the brainstem, and the spinal cord. Also known as Lou Gehrig’s disease, ALS has no conclusive etiology and no known cure. The disease is ultimately fatal within approximately 3 to 5 years and robs individuals of all physical functions while leaving their intellectual capacity and personalities intact. Therefore, patients’ quality of life (QOL) becomes increasingly important in their lives and in the lives of their caregivers. Patients with ALS and their caregivers face a number of psychological, psychosocial, and existential stressors. When caregivers demonstrate signs of depression and anxiety, functional impairment is likely transferred onto the ALS patient. Clearly, caregivers benefit from effective and adaptive coping strategies. Some researchers suggest that religiosity and spirituality may play a sustaining and buffering role when patients and caregivers face the stress of a terminal illness. Other researchers suggest that the cultivation of positive emotion can help psychological well-being over time. This was a cross-sectional study with data generated by ALS caregivers and patients using the following measures: Idler Index of Religiosity, Brief Multidimensional Measure of Religiousness/Spirituality, ALS Specific Quality of Life Questionnaire—Revised, Life Orientation Test—Revised, and Adult State Hope Scale. The following hypotheses were tested: (a) Patient negative emotion would be inversely correlated with patient religiosity and patient spirituality; (b) Caregiver hope would be directly related to patient religiosity and patient spirituality; (c) Caregiver optimism would be directly related to patient religiosity and patient spirituality; (d) Patient negative emotion would be predicted by caregiver hope, optimism, and religiosity and spirituality over and above patient physical functioning, patient religiosity and spirituality, and level of care provided by the caregiver. Analyses of the data collected from the sample of ALS patients (n = 137) and caregivers (n = 54) did not support a strong relationship between caregiver distress and patient negative emotion and QOL. However, there was a small, and slightly obscure relationship, depending on the measure used, between patients’ experience of negative emotion and practice of religiosity and spirituality. These results, although preliminary, support the notion that caregivers’ psychological and physical states do not considerably impact, negatively or positively, patients’ psychologically well-being. The present study did not find a relationship between patient negative emotion and the use of religiosity and spirituality as coping. For reasons perhaps inherent in the current sample of patients and caregivers, they did not utilize religious or spiritual experiences to cope with distress. Despite the results of the current study, we believe that caregiver well-being impacts patient QOL. Limitations of the study and clinical implications of coping with ALS are discussed.

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