Despite the tremendous resilience of children with sickle cell anemia, this chronic illness has a significant impact in adaptation in every major area of functioning—personal care, emotional, recreational, educational, and vocational. Assessment of functional ability may help us to develop a fuller understanding of the relationships among illness severity, pain, physical dysfunction, and psychosocial adjustment in this group. A major challenge in the assessment of sickle cell disease (SCD) pain still lies in finding a reliable behavior referent of pain. Unlike the experience in other pain states (procedure-related pain), physical impairment and functional disability are salient characteristics in chronic SCD pain and, therefore, may contribute significantly to evaluations of pain states (pain ratings, pain characteristics, and pain quality). This article seeks to explore the utility of functional ability as an index of pain and pain behavior in children and adolescents with sickle cell anemia.
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References
1.
Adedoyin, M. A.
(1992). Psychosocial effects of sickle cell disease among adolescents. East African Medical Journal, 69, 370-372.
2.
Armstrong, F. D.
, Thompson, R. J., Wang, W., Zimmerman, R., Pegelow, C. H., Miller, S., Moser, F., Bello, J., Hurtig, A., & Vass, K. (1996). Cognitive functioning and brain magnetic resonance imaging in children with sickle cell disease. Pediatrics, 97, 864-870.
3.
Barbarin, O. A.
(1993). Coping and resilience: Exploring the inner lives of African American children. Journal of Black Psychology, 19, 478-492.
4.
Barbarin, O. A.
, Whitten, C. F., & Bonds, S. M. (1994). Estimating rates of psychosocial problems in urban and poor children with sickle cell anemia. Health & Social Work, 19(2), 112-119.
5.
Barrett, D. H.
, Wisotzek, I. E., Abel, G. G., Rouleau, J. L., Platt, A. F., Pollard, W. E., & Eckman, J. R. (1988). Assessment of psychosocial functioning of patients with sickle cell disease. Southern Medical Journal, 81, 745-750.
6.
Battle, S. F.
(1984). Chronically ill children with sickle cell anemia. In D. Mechanic (Ed.), Chronic illness and disabilities in childhood and adolescence. New York: Grune & Stratton.
7.
Belgrave, F. Z.
(1986, October). The relationship between locus of control and select personality traits in two chronically ill adolescent patient groups. Journal of Rehabilitation, 57-60.
8.
Belgrave, F. Z.
(1991, January). Psychosocial predictors of adjustment to disability in African Americans. Journal of Rehabilitation, 37-40.
9.
Bombardier, C.
, & Tugwell, P. (1987). Methodological considerations in functional assessment. Journal of Rheumatology, 15(14), 6-10.
10.
Campbell, J. D.
(1975). Illness is a point of view: The development of children’s concepts of illness. Child Development, 46, 92-100.
11.
Chua-Lim, C.
, Moore, R. B., McCleary, G., Shah, A., & Mankad, V. (1993). Deficiencies in school readiness skills in children with sickle cell anemia: A preliminary report. Southern Medical Journal, 86, 397-402.
12.
Cohen, S.
(1988). Psychosocial models in social support in the etiology of physical disease. Health Psychology, 7, 269-297.
13.
Conner-Warren, R. L.
(1996). Pain intensity and home pain management of children with sickle cell disease. Issues in Comprehensive Pediatric Nursing, 19, 183-195.
14.
Eaton, L. M.
, Haye, J. S., Armstrong, F. D., Pegelow, C. H., & Thomas, M. (1995). Hospitalizations for painful episodes: Association with school absenteeism and academic performance in children and adolescents with sickle cell anemia. Issues in Comprehensive Pediatric Nursing, 18, 1-9.
15.
Elander, J.
, & Midence, K. (1996). Sickle cell disease: Behavioral and interpersonal influence on pain management. Clinical Journal of Pain, 12(3), 187-191.
16.
Elliott, C. H.
, Jay, S. M., & Woody, P. (1987). An observational scale for measuring children’s distress during medical procedures. Journal of Pediatric Psychology, 12, 543-551.
17.
Fuggle, P.
, Shand, P.A.X., Gill, L. J., & Davies, S. C. (1996). Pain, quality of life, and coping in sickle cell disease. Archives of Disabilities in Childhood, 75, 199-203.
18.
Gil, K. M.
(1994). Behavioral assessment of sickle cell disease pain. Journal of Health and Social Policy, 5(3/4), 19-38.
19.
Gil, K. M.
, Williams, D. A., Keefe, F. J., & Beckman, J. C. (1990). The relationship of negative thoughts to pain and psychological distress. Behavior Therapy, 21, 349-362.
20.
Harding, V. R.
, Williams, A. C., Richardson, P. H., Nicholas, M. K., Jackson, J. L., Richardson, I. H., & Pither, C. E. (1994). The development of a battery of measures for assessing physical functioning of chronic pain patients. Pain, 58, 367-375.
21.
Howe, S.
, Levinson, J., Shear, E., Hartner, S., McGirr, G., Schulte, M., & Lovell, D. (1991). Development of a disability measurement tool for juvenile rheumatoid arthritis: The Juvenile Arthritis Functional Assessment Report for children and their parents. Arthritis and Rheumatism, 34, 873-880.
22.
Jensen, M. P.
, Turner, J. A., & Romano, J. M. (1991). Self-efficacy and outcome expectancy: Relationship to chronic pain coping strategies and adjustment. Pain, 44, 263-269.
23.
Keefe, F. J.
, & Block, A. R. (1982). Development of an observational method for assessing pain behavior in chronic low back pain patients. Behavior Therapy, 13, 363-375.
24.
Keefe, F. J.
, Wilkins, R. H., & Cook, W. A. (1984). Direct observation of pain behavior in low back pain patients during physical examination. Pain, 20, 59-68.
25.
Kroneberger, W. G.
, Carter, B. D., & Thomas, D. (1997). Assessment of behavior problems in pediatric inpatient settings: Development of the Pediatric Inpatient Behavior Scale. Children’s Health Care, 26(4), 211-232.
26.
Kumar, S.
, Powers, D., Allen, J., & Haywood, L. J. (1976). Anxiety, self-concept, and personal and social adjustments in children with sickle cell anemia. Journal of Pediatrics, 88, 859-863.
27.
Kwoh, C. K.
, O’Connor, G. T., Regan-Smith, M. G., Olmstead, E. M., Brown, L. A., Burnett, J. B., Hochman, R. F., King, K., & Morgan, G. J. (1992). Concordance between clinician and patient assessment of physical and mental health status. Journal of Rheumatology, 19, 1031-1037.
28.
Lazarus, R. S.
, & Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer.
29.
LePontois, J.
(1975). Adolescents with sickle cell anemia deal with life and death. Social Work in Health Care, 1(1), 71-80.
30.
Leventhal, J. M.
(1984). Psychosocial assessment of children with chronic physical disease. Pediatric Clinics of North America, 31(1), 71-86.
31.
Longmuir, P. E.
, & Bar-Or, O. (1994). Physical activity of children and adolescents with a disability: Methodology and effects of age and gender. Pediatric Exercise Science, 6, 168-177.
32.
Mechanic, D.
(1972). Social psychological factors affecting the presentation of bodily complaints. New England Journal of Medicine, 286, 1132-1139.
33.
Mechanic, D.
(1980). The experience and reporting of common physical complaints. Journal of Health and Social Behavior, 21, 146-155.
34.
Mechanic, D.
(1983). Adolescent health and illness behavior: Review of the literature and a new hypothesis for the study of stress. Journal of Human Stress, 9, 4-13.
35.
Miller, S. M.
, Sherman, H. D., Combs, C., & Kruus, L. (1992). Patterns of children’s coping with short-term medical and dental stressors: Nature, implications, and future directions. In A. M. LaGreca, L. J. Siegel, J. L. Wallander, & C. E. Walker (Eds.), Advances in pediatric psychology: Stress and coping in child health (pp. 157-190). New York: Guilford.
36.
Morgan, S. A.
, & Jackson, J. (1986). Psychological and social concomitants of sickle cell anemia in adolescents. Journal of Pediatric Psychology, 11, 429-440.
37.
Murray, N.
, & May, A. (1988). Painful crisis in sickle cell disease: Patients’perspectives. British Medical Journal, 297, 452-454.
38.
Nagel, R. L.
(1991). Severity, pathobiology, epistatic effects, and genetic markers in sickle cell anemia. Seminars in Hematology, 28(3), 180-201.
39.
Newacheck, P. W.
, & Stoddard, J. J. (1994). Prevalence and impact of multiple childhood chronic illnesses. Journal of Pediatrics, 124, 40-48.
40.
Peterson, L.
(1989). Coping by children undergoing stressful medical procedures: Some conceptual, methodological, and therapeutic issues. Journal of Consulting and Clinical Psychology, 57, 380-387.
41.
Platt, O. S.
, Thorington, B. D., Brambilla, D. J., Milner, P. F., Rosse, W. F., Vinchinsky, E., & Kinney, T. R. (1991). Pain in sickle cell disease: Rates and risk factors. New England Journal of Medicine, 325, 11-16.
42.
Resnick, J.
(1984). Social construct of disability and handicap. In D. Mechanic (Ed.), Chronic illness and disabilities in childhood and adolescence. New York: Grune & Stratton.
43.
Rock, D. L.
, Fordyce, W. E., Brockway, J., Bergman, J. J., & Spengler, D. M. (1984). Measuring functional impairment associated with pain: Psychometric analysis of an exploratory scoring protocol for activity pattern indicators. Archives of Physical and Medical Rehabilitation, 65, 295-300.
44.
Savedra, M. C.
, Holzemer, W. L., Tesler, M. D., & Wilkie, D. J. (1993). Assessment of postoperation pain in children and adolescents using the Adolescent Pediatric Pain Tool. Nursing Research, 42(1), 5-9.
45.
Singh, G.
, Athreya, B. H., Fries, J. F., & Goldsmith, D. P. (1994). Measurement of health status in children with juvenile rheumatoid arthritis. Arthritis & Rheumatism, 37, 1761-1769.
46.
Spirito, A.
, Stark, L. J., Gil, K. M., & Tyc, V. L. (1995). Coping with everyday and diseaserelated stressors by chronically ill children and adolescents. Journal of the American Academy of Child and Adolescent Psychiatry, 34, 283-290.
47.
Sporrer, K. A.
, Jackson, S. M., Agner, S., Laver, J., & Abboud, M. R. (1994). Pain in children and adolescents with sickle cell anemia: A prospective study utilizing self-reporting. American Journal of Pediatric Hematology/Oncology, 16, 219-224.
48.
Stein, R.E.K.
, & Jessop, D. J. (1984a). General issues in the care of children with chronic physical conditions. Pediatric Clinics of North America, 31(1), 189-198.
49.
Stein, R.E.K.
, & Jessop, D. J. (1984b). Relationship between health status and psychological adjustment among children with chronic conditions. Pediatrics, 73(2), 169-174.
50.
Stewart, A. L.
, Greenfield, S., Hays, R., Wells, K., Rogers, W. H., Berry, S. D., McGlynn, E. A., & Ware, J. E. (1989). Functional status and well-being of patients with chronic conditions. Journal of the American Medical Association, 262, 907-913.
51.
Telfair, J.
(1994). Factors in the long term adjustment of children and adolescents with sickle cell disease: Conceptualizations and review of the literature. Journal of Health and Social Policy, 5(3/4), 69-96.
52.
Thompson, K. L.
, & Varni, J. W. (1986). A developmental cognitive-behavioral approach to pediatric pain assessment. Pain, 25, 283-296.
53.
Thompson, R. J.
, Kronenberger, W., & Curry, J. F. (1989). Behavior classification system for children with developmental, psychiatric, and chronic medical problems. Journal of Pediatric Psychology, 14, 559-575.
54.
Walco, G. A.
, & Dampier, C. D. (1987). Chronic pain in adolescent patients. Journal of Pediatric Psychology, 12, 215-225.
55.
Walco, G. A.
, & Dampier, C. D. (1990). Pain in children and adolescents with sickle cell disease: A descriptive study. Journal of Pediatric Psychology, 15, 643-658.
56.
Walker, L. S.
, & Greene, J. W. (1991). The Functional Disability Inventory: Measuring a neglected dimension of child health status. Journal of Pediatric Psychology, 16(1), 39-58.
57.
Westerman, M. P.
, Baily, K., Freels, S., Schiegel, R., & Williamson, P. (1997). Assessment of painful episode frequency in sickle cell disease. American Journal of Hematology, 54, 183-188.
58.
Whaley, A. L.
(1993). Self-esteem, cultural identity, and psychosocial adjustment in African American children. Journal of Black Psychology, 19, 405-422.
59.
Zeltzer, L. K.
, Barr, R. G., McGrath, P. A., & Schecter, N. L. (1992). Pediatric pain: Interacting behavioral and physical factors. Pediatrics, 90, 816-821.
