Engaging patients in population-based chronic disease management: A qualitative study of barriers and intervention opportunities |
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| Institution: | 1. The International Federation of Kidney Foundation – World Kidney Alliance (IFKF-WKA), Division of Nephrology and Hypertension and Kidney Transplantation, University of California Irvine, Orange, CA, USA;2. Department of Medicine and Therapeutics, Carol & Richard Yu PD Research Centre, Prince of Wales Hospital, Chinese University of Hong Kong, Hong Kong;3. Division of Nephrology, Hypertension and Kidney Transplantation, Department of Medicine, University of California Irvine School of Medicine, Orange, CA, USA;4. Tanker Foundation, Chennai, India;5. Division of Nephrology and Hypertension, 1st Department of Internal Medicine, AHEPA Hospital, Aristotle University of Thessaloniki, Thessaloniki, Greece;6. Hong Kong Kidney Foundation and the International Federation of Kidney Foundations – World Kidney Alliance, The Jockey Club School of Public Health and Primary Care, The Chinese University of Hong Kong, Hong Kong, China;7. Renal Unit, Department of Medicine, College of Medicine, University of Nigeria, Ituku-Ozalla, Enugu, Nigeria;8. James Whitcomb Riley Hospital for Children, Indiana University School of Medicine, Indianapolis, IN, USA;9. Italian Kidney Foundation, Rome, Italy;10. World Kidney Day Office, Brussels, Belgium;11. Polycystic Kidney Disease Charity, London, UK;12. American Association of Kidney Patients. Tampa, FL, USA;13. Hong Kong Kideny Foundation, Hong Kong, China;14. Nephrology Unit, Department of Internal Medicine, Faculty of Medicine, Cairo University, Giza, Egypt;15. Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia;1. Department of Family Medicine, American University of Beirut, Lebanon;2. Division of Orthopedic Surgery / Department of Surgery, American University of Beirut, Lebanon;3. Department of Arts and Science, American University of Beirut, Lebanon;1. Division of General Internal Medicine, Department of Medicine, University of California San Francisco (UCSF), USA;2. Multiethnic Health Equity Research Center, Division of General Internal Medicine, University of California San Francisco (UCSF), USA;3. Department of Psychiatry and Behavioral Sciences, Immigrant Health and Cancer Disparities Service, Memorial Sloan-Kettering Cancer Center, USA;1. Division of Cancer Survivorship Research, Center for Cancer Control and Information Services, National Cancer Center, Japan;2. School of Nursing and Social Service, Health Sciences University of Hokkaido, Japan;3. Department of Palliative Medicine, Saitama Medical University International Medical Center, Japan;4. Faculty of Health Sciences, Yamaguchi University Graduate School of Medicine, Japan |
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| Abstract: | ObjectiveCardiovascular disease (CVD) continues to be a leading cause of morbidity in the U.S. Managing CVD risk factors, such as diabetes or hypertension, can be challenging for many individuals. We investigated the barriers experienced by patients who persistently struggled to reach their CVD risk factor control goals.MethodsThis qualitative study examined patient, clinician, and researcher observations of individuals’ experiences in a chronic disease management program. All participants (n = 332) were enrolled in a clinical trial testing a skills-based group intervention seeking to improve healthcare engagement. Data were analyzed through a general inductive approach and resulting themes were structured along the Capability-Opportunity-Motivation-Behavior framework.ResultsAnalyses identified care engagement barriers related to participants’ communication skills and activation, care team relationship processes, and emotional factors. Although most participants reported benefitting from skills training, persistent barriers included distrust of their providers, shame about health challenges, and dissatisfaction with care team interactions that were described as impersonal or unresponsive.Conclusions and practice implicationsEfforts to support engagement in CVD risk factor management programs should address whether patients and their care team have the necessary skills, opportunities and confidence to proactively communicate health needs and engage in non-judgmental interactions for goal-setting, rapport-building, and shared decision-making. |
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| Keywords: | Cardiovascular disease Diabetes Hypertension Patient education Patient activation Motivation Patient-provider communication Patient participation in healthcare |
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