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Quality of Life Research
Gepubliceerd in:

01-03-2010

Communicating about the experience of pain and fatigue in disability

Auteurs: Kathryn M. Yorkston, Kurt Johnson, Erin Boesflug, Joe Skala, Dagmar Amtmann

Gepubliceerd in: Quality of Life Research | Uitgave 2/2010

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Abstract

Purpose

To examine the experiences of people with chronic disabling conditions as they communicate with health care providers about pain and fatigue.

Method

Twenty-three adults with a variety of chronic disabling conditions participated in 5 focus groups. The following issues were raised: tell me about your pain/fatigue; what things go along with pain/fatigue? how do you talk about pain/fatigue with your health care provider (HCP)? What should your HCP know that they do not ask you about?

Results

Results of qualitative analysis suggested two major themes. The first theme was labeled “Putting it in words” and suggests that both pain and fatigue are described in many ways, including the dimensions of type, intensity, level of interference and temporal aspects. Participants reported difficulty with responding to a single question that asked them to assign a number to their level of pain or fatigue. The second theme was labeled, “Let’s talk about it” and suggested that participants wanted HCPs “to listen and believe me when I describe my experience”. They wanted to be asked about how pain or fatigue interferes with life and about compensatory strategies rather than being asked to rate symptom intensity. Participants wished to be viewed as experts and to be actively involved in decisions about their health care.

Conclusions

Pain and fatigue were viewed as having many facets that are associated in complex ways with other aspects of the health/disability condition. From the participants’ perspective, assignment of a pain intensity rating does not represent the complexity of their pain experience. Suggestions are provided for HCPs when communicating about pain and fatigue with people with chronic conditions.
vorige artikel Deriving SF-12v2 physical and mental health summary scores: a comparison of different scoring algorithms
volgende artikel Somatically ill persons’ self-nominated quality of life domains: review of the literature and guidelines for future studies
Voetnoten
1
Parentheses include the sex and diagnosis of the participant quoted.
 
Literatuur
1.
Robinson, J. P. (2007). Chronic pain. Physical medicine and rehabilitation clinics of North America, 18(4), 761–783.CrossRefPubMed
2.
Johnson, S. L. (2008). The concept of fatigue in multiple sclerosis. Journal of Neuroscience Nursing, 40(2), 72–77.CrossRefPubMed
3.
Repping-Wuts, H., Fransen, J., van Achterberg, T., Bleijenberg, G., & van Riel, P. (2007). Persistent severe fatigue in patients with rheumatoid arthritis. Journal of Nursing & Healthcare of Chronic Illnesses, 16(11c), 377–383.
4.
Appelros, P. (2006). Prevalence and predictors of pain and fatigue after stroke: A population-based study. International Journal of Rehabilitation Research, 29(4), 329–333.CrossRefPubMed
5.
Barat, M., Dehail, P., & de Seze, M. (2006). Fatigue after spinal cord injury. Annales de réadaptation et de médecine physique, 49(6), 277–282. 365–9.CrossRefPubMed
6.
Benrud-Larson, L. M., & Wegener, S. T. (2000). Chronic pain in neurorehabilitation populations: Prevalence, severity and impact. Neurorehabilitation, 14, 127–137.PubMed
7.
Marshall, M., Helmes, H., & Deathe, A. B. (1992). A comparison of psychosocial functioning and personality in amputee and chronic pain populations. The Clinical Journal of Pain, 8, 351–357.CrossRefPubMed
8.
Stenager, E., Knudsen, L., & Jensen, K. (1991). Acute and chronic pain syndromes in multiple sclerosis. Acta Neurologica Scandinavica, 84(3), 197–200.CrossRefPubMed
9.
Turk, M. A., Geremski, C. A., Rosenbaum, P. P., & Weber, R. J. (1997). The health status of woman with cerebral palsy. Archives of Physical Medicine and Rehabilitation, 78, S10–S17.CrossRefPubMed
10.
Michael, K. M., Allen, J. K., & Macko, R. F. (2006). Fatigue after stroke: Relationship to mobility, fitness, ambulatory activity, social support, and falls efficacy. Rehabilitation Nursing, 31(5), 210–217.PubMed
11.
Schepers, V. P., Visser-Meily, A. M., Ketelaar, M., & Lindeman, E. (2006). Poststroke fatigue: Course and its relation to personal and stroke-related factors. Archives of Physical Medicine and Rehabilitation, 87(2), 184–188.CrossRefPubMed
12.
Flachenecker, P., Kumpfel, T., Kallmann, B., Gottschalk, M., Grauer, O., Riech, P., et al. (2002). Fatigue in multiple sclerosis: A comparison of different rating scales and correlation to clinical parameters. Multiple Sclerosis, 8(6), 523–526.CrossRefPubMed
13.
Jahnsen, R., Villien, L., Stanghelle, J. K., & Holm, I. (2003). Fatigue in adults with cerebral palsy in Norwazy compared with general population. Developmental Medicine and Child Neurology, 45(5), 296–303.CrossRefPubMed
14.
Banko, L. (2005). Aging with spinal cord injury: A review of the literature. SCI Nursing, 22(3), 138–145.
15.
McColl, M. A., Arnold, R., Charlifue, S. W., Glass, C., Savic, G., & Frankel, H. (2003). Aging, spinal cord injury, and quality of life: Structural relationships. Archives of Physical Medicine and Rehabilitation, 84(8), 1137–1144.CrossRefPubMed
16.
Williams, A., Davies, H. T. O., & Chadury, Y. (2000). Simple pain rating scales hide complex idiosyncratic meaning. Pain, 85, 457–463.CrossRef
17.
Melzack, R. (2005). Evolution of the neuromatrix theory of pain. The Prithvi Raj Lecture: Presented at the third World Congress of World Institute of Pain, Barcelona 2004. Pain Practice, 5(2):85–94.
18.
19.
Wilson, D., Williams, M., & Butler, D. (2009). Language and the pain experience. Physiotherapy Research International, 14(1), 56–65.CrossRefPubMed
20.
Fisk, J. D., Pontefract, A., Ritvo, P. G., Archibald, C. J., & Murray, T. J. (1994). The impact of fatigue on patients with multiple sclerosis. Canadian Journal of Neurological Sciences, 21(1), 9–14.PubMed
21.
Ehde, D. M., Osborne, T. L., & Jensen, M. P. (2005). Chronic pain in persons with multiple sclerosis. Physical Medicine & Rehabilitation Clinics of North America, 16, 503–512.CrossRef
22.
Widerstrom-Noga, E. G., Felipe-Cuervo, E., & Yezierski, R. P. (2001). Chronic pain after spinal injury: Interference with sleep and daily activities. Archives of Physical Medicine and Rehabilitation, 82(11), 1571–1577.CrossRefPubMed
23.
Krupp, L. B., & Elkins, L. E. (2000). Fatigue and declines in cognitive functioning in multiple sclerosis. Neurology, 55, 934–939.PubMed
24.
Kroencke, D. C., Lynch, S. G., & Denney, D. R. (2000). Fatigue in multiple sclerosis: relationship to depression, disability, and disease pattern. Multiple-sclerosis, 6(2), 131–136.PubMed
25.
Post, D. M., Cegala, D. J., & Miser, W. F. (2002). The other half of the whole: Teaching patients to communicate with physicians. Family Medicine, 34(5), 344–352.PubMed
26.
Iezzoni, L. I., Davis, R. B., Soukup, J., & O’Day, B. (2003). Quality dimensions that most concern people with physical and sensory disabilities. Archives of Internal Medicine, 163, 2085–2092.CrossRefPubMed
27.
Aulagnier, M., Verger, P., Ravaud, J., Souville, M., Lussault, P., Garnier, J., et al. (2005). General practitioners’ attitudes towards patients with disabilities: The need for training and support. Disability and Rehabilitation, 27(22), 1343–1352.CrossRefPubMed
28.
Dudgeon, B. J., Gerrard, B., Jensen, M. P., Rhodes, L. A., & Tyler, E. (2002). Physical disability and the experience of chronic pain. Archives of Physical Medicine and Rehabilitation, 83, 229–235.CrossRefPubMed
29.
Cella, D., Yount, S., Rothrock, N., Cershon, R., Cook, K., Reeve, B., et al. (2007). The patient-reported outcome measurement information system (PROMIS). Medical Care, 45(5 Suppl 1), S3–S11.CrossRefPubMed
30.
Krueger, R. A., & Casey, M. A. (2000). Focus groups: A practical guide for applied research. Newbury Park, CA: Sage Publishers.
31.
DeWalt, D. A., Rothrock, N., Yount, S., & Stone, A. A. (2007). Evaluation of item candidates: The PROMIS qualitative item review. Medical Care, 45(5 Suppl 1), S12–S21.CrossRefPubMed
32.
Benner, P. (Ed.). (1994). Interpretive phenomenology. Thousands Oak, CA: Sage Publications.
33.
Williams, D. A., Park, K. M., Ambrose, K. R., & Clauw, D. J. (2007). Assessor status influences pain recall. The Journal of Pain, 8(4), 343–348.CrossRefPubMed
34.
Barrier, P. A., Li, J. T. C., & Jensen, N. M. (2003). Two words to improve physician-patient communication: What else? Mayo Clinic Proceedings, 78, 211–214.CrossRefPubMed
35.
Kenny, D. (2004). Constructions of chronic pain in doctor-patient relationships: Bridging the communication chasm. Patient Education and Counseling, 52, 297–305.CrossRefPubMed
36.
Butt, Z., Wagner, L. I., Beaumont, J. L., Paice, J. A., Strauss, J. L., Peterman, A. H., Carro, G., Von Roenn, J. H., Shevrin, D., & Cella, D. (2007). Longitudinal screening and management of fatigue, pain, and emotional distress associated with cancer therapy. Support Care Cancer, July 3 (Epub ahead of print).
37.
Passik, S. D., Kirsh, K. L., Donaghy, K., Holtsclaw, E., Theobald, D., Cella, D., et al. (2002). Patient-related barriers to fatigue communication: Initial validation of the Fatigue Management Barriers Questionnaire. Journal of Pain Symptom Management, 24(5), 481–493.CrossRef
38.
Kirmayer, L. J., Groleau, D., Looper, K. J., & Dao, M. D. (2004). Explaining medically unexplained symptoms. Canadian Journal of Psychiatry, 49(10), 663–672.
39.
Smith, R. C., Lein, C., Collins, C., Lyles, J. S., Given, B., Dwamena, F. C., et al. (2003). Treating patients with medically unexplained symptoms in primary care. Journal of General Internal Medicine, 18(6), 478–489.CrossRefPubMed
40.
Shaw, W. S., Zala, A., Pransky, G., Winters, T., & Patterson, W. B. (2005). Perceptions of provider communication and patient satisfaction for treatment of acute low back pain. Journal of Occupational and Environmental Medicine, 47(10), 1036–1043.CrossRefPubMed
41.
Jenkin, P., Koch, T., & Kralik, D. (2006). The experience of fatigue for adults living with HIV. Journal of Clinical Nursing, 15(9), 1123–1131.CrossRefPubMed
42.
De Souza, L. H., & Frank, A. O. (2007). Experiences of living with chronic pain: The physical disabilities. Disability and Rehabilitation, 29(7), 587–596.CrossRefPubMed
43.
Brown, C. A. (2003). Service users’ and occupational therapists’ beliefs about effective treatments for chronic pain: A meeting of the minds or the great divide? Disability and Rehabilitation, 25(19), 1115–1125.CrossRefPubMed
44.
Elwyn, G., Edwards, A. G. K., Wensing, M., Hood, K., Atwell, C., & Grol, R. (2003). Shared decison making: Developing the OPTION scale for measuring patient involvement. Quality and Safety in Health Care, 12, 93–99.CrossRefPubMed
45.
Mauksch, L. B., Dugdale, D. C., Dodson, S., & Epstein, R. (2008). Relationship, communication and efficiency in the medical encounter. Archives of Internal Medicine, 168(13), 1387–1395.CrossRefPubMed
Metagegevens
Titel
Communicating about the experience of pain and fatigue in disability
Auteurs
Kathryn M. Yorkston
Kurt Johnson
Erin Boesflug
Joe Skala
Dagmar Amtmann
Publicatiedatum
01-03-2010
Uitgeverij
Springer Netherlands
Gepubliceerd in
Quality of Life Research / Uitgave 2/2010
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-009-9572-1

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