Alina Palimaru1, William E Cunningham2,3, Marcus Dillistone4, Arturo Vargas-Bustamante2, Honghu Liu5, Ron D Hays2,3. 1. Department of Health Policy and Management, UCLA Fielding School of Public Health, 650 Charles E. Young Dr. S., Los Angeles, CA, 90095, USA. alinapalimaru@ucla.edu. 2. Department of Health Policy and Management, UCLA Fielding School of Public Health, 650 Charles E. Young Dr. S., Los Angeles, CA, 90095, USA. 3. Division of General Internal Medicine & Health Services Research, Department of Medicine, UCLA, Geffen School of Medicine, Los Angeles, CA, 90095, USA. 4. Royal Society of Medicine, 1 Wimpole Street, Marylebone, London, W1G 0AE, UK. 5. Division of Public Health & Community Dentistry, School of Dentistry, UCLA, Los Angeles, CA, 90095, USA.
Abstract
PURPOSE: To identify which aspects of life are most important to adults with spinal cord injury (SCI) and compare perspectives in the United States and the United Kingdom. METHODS: We conducted 20 in-depth interviews with adults with SCI (ten in the US and ten in the UK). Verbatim transcriptions were independently analyzed line-by-line by two coders using an inductive approach. Codes were grouped into themes about factors that constitute and affect quality of life (QOL). RESULTS: Five overarching themes emerged: describing QOL in the context of SCI; functional adjustment; medical care; financial resources; and socio-political issues. Twenty subthemes emerged on factors that affect QOL. Participants in both samples identified medical care as a key influence on QOL. The US group talked about a predominantly negative influence (e.g., fragmented primary and specialist care, insurance constraints, bureaucracy), whereas UK interviewees mentioned a predominantly positive influence (e.g., universal provision, including free and continuous care, free wheelchairs and home care, and length of rehabilitation commensurate with level of injury). Functional adjustment, such as physical and mental adjustment post-discharge and aging with SCI, was another important contributor to QOL, and varied by country. Most US interviewees reported poor knowledge about self-care post-discharge and poor quality of home adaptations compared to the UK group. CONCLUSIONS: For adults living with SCI, good QOL is essential for successful rehabilitation. Differences between interviewees from the two countries in perceived medical care and functional adjustment suggest that factors affecting QOL may relate to broader health system characteristics.
PURPOSE: To identify which aspects of life are most important to adults with spinal cord injury (SCI) and compare perspectives in the United States and the United Kingdom. METHODS: We conducted 20 in-depth interviews with adults with SCI (ten in the US and ten in the UK). Verbatim transcriptions were independently analyzed line-by-line by two coders using an inductive approach. Codes were grouped into themes about factors that constitute and affect quality of life (QOL). RESULTS: Five overarching themes emerged: describing QOL in the context of SCI; functional adjustment; medical care; financial resources; and socio-political issues. Twenty subthemes emerged on factors that affect QOL. Participants in both samples identified medical care as a key influence on QOL. The US group talked about a predominantly negative influence (e.g., fragmented primary and specialist care, insurance constraints, bureaucracy), whereas UK interviewees mentioned a predominantly positive influence (e.g., universal provision, including free and continuous care, free wheelchairs and home care, and length of rehabilitation commensurate with level of injury). Functional adjustment, such as physical and mental adjustment post-discharge and aging with SCI, was another important contributor to QOL, and varied by country. Most US interviewees reported poor knowledge about self-care post-discharge and poor quality of home adaptations compared to the UK group. CONCLUSIONS: For adults living with SCI, good QOL is essential for successful rehabilitation. Differences between interviewees from the two countries in perceived medical care and functional adjustment suggest that factors affecting QOL may relate to broader health system characteristics.
Entities:
Keywords:
Health-related quality of life; Outcomes; Quality of life; Rehabilitation; Spinal cord injury
Authors: Alina Ionela Palimaru; William E Cunningham; Marcus Dillistone; Arturo Vargas-Bustamante; Honghu Liu; Ron D Hays Journal: Arch Phys Med Rehabil Date: 2018-04-26 Impact factor: 3.966
Authors: Alina Ionela Palimaru; William E Cunningham; Marcus Dillistone; Arturo Vargas-Bustamante; Honghu Liu; Ron D Hays Journal: J Spinal Cord Med Date: 2018-05-23 Impact factor: 1.985
Authors: Agata Goraczko; Grzegorz Zurek; Maciej Lachowicz; Katarzyna Kujawa; Wiesław Blach; Alina Zurek Journal: Int J Environ Res Public Health Date: 2020-10-13 Impact factor: 3.390