Psychological Adaptation to Serious Illness: A Qualitative Study of Culturally Diverse Patients With Advanced Chronic Kidney Disease |
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| Authors: | Devika Nair Kemberlee Bonnet Marcus G. Wild Ebele M. Umeukeje Rachel B. Fissell Marquetta L. Faulkner Nader S. Bahri Marino A. Bruce David G. Schlundt Kenneth A. Wallston Kerri L. Cavanaugh |
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| Affiliation: | 1. Division of Nephrology and Hypertension, Department of Medicine, Vanderbilt University Medical Center, Nashville, Tennessee, USA;2. Vanderbilt O''Brien Center for Kidney Disease, Nashville, Tennessee, USA;3. Department of Psychology, Vanderbilt University, Nashville, Tennessee, USA;4. Division of Nephrology, Meharry Medical College, Nashville, Tennessee, USA;5. Program for Research on Faith, Justice, and Health, Department of Population Health, John D. Bower School of Population Health, University of Mississippi Medical Center, Jackson, Mississippi, USA;6. Institute for Medicine and Public Health, Vanderbilt University Medical Center, Nashville, Tennessee, USA;7. Center for Effective Health Communication, Vanderbilt University Medical Center, Nashville, Tennessee, USA;1. ICES, Toronto, Ontario, Canada;2. Division of Biostatistics, Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada;3. Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada;4. Department of Oncology, Tom Baker Cancer Centre, University of Calgary, Calgary, Alberta, Canada;1. Department of Palliative, Rehabilitation and Integrative Medicine, The University of Texas MD Anderson Cancer, Houston, Texas, USA;2. Department of Biostatistics, The University of Texas MD Anderson Cancer, Houston, Texas, USA;1. Department of Psycho-Oncology, National Cancer Center Hospital, Chuo-ku, Tokyo, Japan;2. Behavioral Sciences and Survivorship Research Group, Division of Health Care Research, Center for Public Health Sciences, National Cancer Center Japan, Chuo-ku, Tokyo, Japan;3. Innovation Center for Supportive, Palliative and Psychosocial Care, National Cancer Center Hospital, Chuo-ku, Tokyo, Japan;4. Behavioral Sciences and Survivorship Research Group, Center for Public Health Sciences, National Cancer Center Japan, Chuo-ku, Tokyo, Japan;5. Division of Biostatistics, Tohoku University Graduate School of Medicine, Sendai, Miyagi, Japan;6. Department of Anesthesia and Intensive Care, National Cancer Center Hospital, Chuo-ku, Tokyo, Japan;7. Department of Hepatobiliary and Pancreatic Surgery, National Cancer Center Hospital, Chuo-ku, Tokyo, Japan;8. Department of Head and Neck Surgery, National Cancer Center Hospital, Chuo-ku, Tokyo, Japan;9. Department of Esophageal Surgery, National Cancer Center Hospital, Chuo-ku, Tokyo, Japan;10. Department of Colorectal Surgery, National Cancer Center Hospital, Chuo-ku, Tokyo, Japan;11. Department of Musculoskeletal Oncology and Rehabilitation, National Cancer Center Hospital, Chuo-ku, Tokyo, Japan;12. Department of Gynecology, National Cancer Center Hospital, Chuo-ku, Tokyo, Japan;13. Department of Urology, National Cancer Center Hospital, Chuo-ku, Tokyo, Japan;14. Department of Psycho-Oncology, Cancer Institute Hospital of JFCR, Koto-ku, Japan;1. Department of Healthcare Epidemiology, School of Public Health in the Graduate School of Medicine, Kyoto University, Kyoto, Japan;2. Department of General Medicine, Shirakawa Satellite for Teaching And Research (STAR), Fukushima Medical University, Shirakawa, Fukushima, Japan;3. Section of Clinical Epidemiology, Department of Community Medicine, Graduate School of Medicine, Kyoto University, Kyoto, Japan;4. Institute for Health Outcomes and Process Evaluation Research (iHope International), Kyoto, Japan;5. Center for Innovative Research for Communities and Clinical Excellence (CIRC2LE), Fukushima Medical University, Fukushima, Fukushima, Japan;1. Saint Thomas West Hospital, Nashville, Tennessee, USA;2. The George Washington University Hospital, Washington, District of Columbia, USA;3. Department of Medicine (Palliative Care), Northwestern Feinberg School of Medicine, Chicago, Illinois, USA;1. Division of Medical Support and Partnership, Center for Cancer Control and Information Services, National Cancer Center, Chuo-ku, Tokyo, Japan;2. Department of Palliative Nursing, Health Sciences, Tohoku University Graduate School of Medicine, Sendai, Miyagi, Japan;3. Department of Nursing, Nagoya University Graduate School of Medicine, Nagoya Higashi-ku, Aichi, Japan;4. Division of Psycho-Oncology, Exploratory Oncology Research and Clinical Trial Center, National Cancer Center, Kashiwa, Chiba, Japan;5. Department of Palliative Care, Tokatu Hospital, Nagareyama, Chiba, Japan;6. Division of Palliative Medicine, Kobe University Hospital, Kobe University School of Medicine, Chuo-ku, Kobe, Hyogo, Japan;7. Department of Palliative and Supportive Care, Palliative Care Team, and Seirei Hospice, Seirei Mikatahara General Hospital, Hamamatsu, Shizuoka, Japan |
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| Abstract: | ![]()
ContextPsychological distress is associated with adverse health outcomes in serious illness and magnified among patients of low socioeconomic status. Aspects of one's culture, such as religion and spirituality, can influence these patients' coping response to distress. Advanced chronic kidney disease (CKD) is a serious illness that disproportionately affects patients of low socioeconomic status, but a theory-based understanding of this group's lived experience of CKD is lacking.ObjectivesWe explored the cognitions, emotions, and coping behaviors of patients with CKD with emphasis on those of low socioeconomic status. We further inquired into any influences of religion or spirituality.MethodsWe interviewed 50 English-speaking or Spanish-speaking adults with advanced CKD from three medical centers in Nashville, Tennessee. Analyses occurred with isolation of themes; development of a coding system; and creation of a conceptual framework using an inductive-deductive approach.ResultsMedian age was 65 years; median annual income was $17,500 per year; and 48% of participants had not progressed beyond high school. Key beliefs (awareness of mortality and lack of control) influenced patients' emotions (existential distress in the form of death anxiety, prognostic uncertainty, and hopelessness) and coping behaviors (acceptance, avoidance, emotion regulation via spirituality, and seeking social support via a religious community).ConclusionIndividuals with advanced CKD and low socioeconomic status lack control over disease progression, experience death anxiety and existential distress, and emphasize spirituality to cope. Our study identifies novel components for a psychotherapeutic intervention for patients with advanced CKD at high risk for adverse health outcomes. |
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| Keywords: | Qualitative socioeconomic disadvantage kidney existential distress |
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