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Quality of Life Research
Published in: Quality of Life Research 11/2017

01-11-2017

A comparison of perceptions of quality of life among adults with spinal cord injury in the United States versus the United Kingdom

Authors: Alina Palimaru, William E. Cunningham, Marcus Dillistone, Arturo Vargas-Bustamante, Honghu Liu, Ron D. Hays

Published in: Quality of Life Research | Issue 11/2017

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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.
Literature
1.
2.
Werndle, M. C., Zoumprouli, A., Sedgwick, P., & Papadopoulos, M. C. (2012). Variability in the treatment of acute spinal cord injury in the United Kingdom: Results of a national survey. Journal of Neurotrauma, 29(5), 880–888.CrossRefPubMed
3.
4.
5.
Felce, D., & Perry, J. (1995). Quality of life: Its definition and measurement. Research in Developmental Disabilities, 16(1), 51–74.CrossRefPubMed
6.
Naess, S. (1999). Subjective approach to quality of life. Feminist Economics, 5(2), 115–118.CrossRef
7.
Kahn, R. L., & Juster, F. T. (2002). Well-being: Concepts and measures. Journal of Social Issues, 58(4), 627–644.CrossRef
8.
Christoph, B., & Noll, H.-H. (2003). Subjective well-being in the European Union during the 90s. Social Indicators Research, 64, 521–546.CrossRef
9.
Fung, C., & Hays, R. D. (2008). Prospects and challenges in using patient-reported outcomes in clinical practice. Quality of Life Research, 17(10), 1297–1302.CrossRefPubMedPubMedCentral
10.
Franceschini, M., Di Clemente, B., Rampello, A., Nora, M., & Spizzichino, L. (2003). Longitudinal outcome 6 years after spinal cord injury. Spinal Cord, 41(5), 280–285.CrossRefPubMed
11.
Westgren, N., & Levi, R. (1998). Quality of life and traumatic spinal cord injury. Archives of Physical Medicine and Rehabilitation, 79(11), 1433–1439.CrossRefPubMed
12.
Vogel, L. C., Klaas, S. J., Lubicky, J. P., & Anderson, C. J. (1998). Long-term outcomes and life satisfaction of adults who had pediatric spinal cord injuries. Archives of Physical Medicine and Rehabilitation, 79, 1496–1503.CrossRefPubMed
13.
Glass, C. A. (1993). The impact of home based ventilator dependence on family life. Paraplegia, 31(2), 93–101.CrossRefPubMed
14.
Siosteen, A., Lundqvist, C., Blomstrand, C., Sullivan, L., & Sullivan, M. (1990). The quality of life of three functional spinal cord injury subgroups in a Swedish community. Paraplegia, 28, 476–488.CrossRefPubMed
15.
Clayton, K. S., & Chubon, R. A. (1994). Factors associated with the quality of life of long-term spinal cord injured persons. Archives of Physical Rehabilitation and Medicine, 75, 633–638.CrossRef
16.
Lin, K.-H., Chuang, C.-C., Kao, M.-J., I-Nan, L., & Tsauo, J.-Y. (1997). Quality of life of spinal cord injured patients in Taiwan: A subgroup study. Spinal Cord, 35, 841–849.CrossRefPubMed
17.
Dijkers, M. P. (2005). Quality of life of individuals with spinal cord injury: A review of conceptualization, measurement, and research findings. Journal of Rehabilitation Research and Development, 42(3), 87–110.PubMed
18.
Hammell, K. R. (2010). Spinal cord injury rehabilitation research: Patient priorities, current deficiencies and potential directions. Disability and Rehabilitation, 32(14), 1209–1218.CrossRefPubMed
19.
Hammell, K. R. (2004). Exploring quality of life following high spinal cord injury: a review and critique. Spinal Cord, 42(9), 491–502.CrossRefPubMed
20.
Dijkers, M. P. (1999). Correlates of life satisfaction among persons with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 80(8), 867–876.CrossRefPubMed
21.
22.
Halvorson, G. C. (2007). Healthcare reform now! A prescription for change. Los Angeles: Jossey-Bass.
23.
Pollock, A. M. (2004). NHS plc. Bath: The Bath Press.
24.
Tseng, H. M., Lu, R. J., & Gandek, B. (2003). Cultural issues in using the SF-36 health survey in Asia: results from Taiwan. Health and Quality of Life Outcomes, 1(72), 1–9.
25.
Atlas.ti. Version 7.5.12 [Computer software]. (1999). Berlin, Scientific Software Development.
26.
Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. London: Sage.
27.
Ryan, G. W., & Bernard, H. R. (2003). Techniques to identify themes. Field Methods, 15(1), 85–109.CrossRef
28.
Bernard, R. H., & Ryan, G. W. (1998). Text analysis qualitative and quantitative methods. In R. H. Bernard (Ed.), Handbook of methods in cultural anthropolgy (pp. 595–646). Walnut Creek: AltaMira Press.
29.
MacQueen, K. M., McLellan, E., Kay, K., & Milstein, B. (1998). Codebook Development for Team-Based Qualitative Analysis. Cultural Anthropology Methods, 10, 31–36.
30.
Cohen, J. (1960). A coefficient of agreement for nominal scales. Educational and Psychological Measurement, 20, 37–46.CrossRef
31.
Cohen, J. (1968). Weighted kappa: nominal scale agreement with provision for scaled disagreement or partial credit. Psychological Bulletin, 70(4), 213–220.CrossRefPubMed
32.
Benner, H., & Kliebsch, U. (1996). Dependence of Weighted Kappa Coefficients on the Number of Categories. Epidemiology, 7(2), 199–202.CrossRef
33.
McHugh, M. L. (2012). Interrater reliability: the kappa statistic. Biochimia Medica, 22(3), 276–282.CrossRef
34.
Shulman, S. W. (2011, November 30). Measure inter-rater reliability and adjudicate coder choices for measures of accuracy. Retrieved November 30, 2011, from Coding Analysis Toolkit: http://​cat.​ucsur.​pitt.​edu.
35.
Hruschka, D. J., Schwartz, D., St, Cobb, John, D., Picone-Decaro, E., Jenkins, R. A., et al. (2004). Reliability in coding open-ended data: Lessons learned from HIV behavioral research. Field Methods, 16(3), 307–331.CrossRef
36.
Duggan, C. H., & Dijkers, M. (2001). Quality of life after spinal cord injury: A qualitative study. Rehabilitation Psychology, 46(1), 3–27.CrossRef
37.
Boswell, B., Dawson, M., & Heininger, E. (1998). Quality of life as defined by adults with spinal cord injuries. Journal of Rehabilitation, 64, 27–32.
38.
Hammell, K. W., Miller, W. C., Forwell, S. J., Forman, B. E., & Jacobsen, B. A. (2009). Managing fatigue following spinal cord injury: A qualitative exploration. Disability and Rehabilitation, 31(17), 1437–1445.CrossRefPubMed
39.
Hammell, K. W., Miller, W. C., Forwell, S. J., Forman, B. E., & Jacobsen, B. A. (2009). Fatigue and spinal cord injury: A qualitative analysis. Spinal cord, 47, 44–49.CrossRefPubMed
40.
Anton, H. A., Miller, W. C., & Townson, A. F. (2008). Measuring fatigue in persons with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 89(3), 538–542.CrossRefPubMedPubMedCentral
41.
Saumure, K., & Given, L. M. (2015). Using Skype as a Research Tool: Lessons Learned from Qualitative Interviews with Distance Students in a Teacher-Librarianship Program.
42.
Sullivan, J. R. (2012). Skype: an appropriate method of data collection for qualitative interviews? The Hilltop Review, 6(1), 54–60.
Metadata
Title
A comparison of perceptions of quality of life among adults with spinal cord injury in the United States versus the United Kingdom
Authors
Alina Palimaru
William E. Cunningham
Marcus Dillistone
Arturo Vargas-Bustamante
Honghu Liu
Ron D. Hays
Publication date
01-11-2017
Publisher
Springer International Publishing
Published in
Quality of Life Research / Issue 11/2017
Print ISSN: 0962-9343
Electronic ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-017-1646-x

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