Abstract
The objective of this study was to examine resilience among adolescents with sickle cell disease (SCD), focusing on the interaction of health-related quality of life with stress processing to explain adaptive behavior. Forty-four adolescents with SCD completed paper-and-pencil measures of health-related quality of life, appraisals (hope), pain coping strategies (e.g. adherence), and adaptive behavior. Self-reported health-related quality of life was significantly associated with adaptive behavior, as was adherence. Findings for moderation were mixed. Pain coping strategies moderated the association of health-related quality of life with adaptive behavior such that at lower levels of Coping Strategies Questionnaire (CSQ) Adherence, better quality of life was associated with higher adaptive behavior. Similarly, at higher levels of hope, better quality of life was associated with higher adaptive behavior, and poorer quality of life was associated with lower adaptive behavior. Adolescents with SCD showed resilience, particularly in terms of personal adjustment, that may be explained by their appraisals and stress processing strategies. Interventions to support an optimistic or hopeful outlook and improve adherence to recommendations for medical management of sickle cell pain may result in improved resilience/adaptive behavior.
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References
Alao, A. O., & Cooley, E. (2001). Depression and sickle cell disease. Harvard Review of Psychiatry, 9, 169–177. doi:10.1080/10673220127896.
Armstrong, F. D., Toledano, S. R., Miloslavich, K., Lackman-Zeman, L., Levy, J. D., Gay, C. L., et al. (1999). The Miami Pediatric Quality of Life Questionnaire: Parent scale. International Journal of Cancer. Supplement, 12, 11–17. doi:10.1002/(SICI)1097-0215(1999)83:12+<11:AID-IJC4>3.0.CO;2-8.
Barakat, L. P., Lash, L. A., Lutz, M. J., & Nicolaou, D. C. (2006). Psychosocial adaptation of children and adolescents with sickle cell disease. In R. T. Brown (Ed.), Comprehensive handbook of childhood cancer and sickle cell disease: A biopsychosocial approach (pp. 471–495). New York, NY: Oxford University Press.
Barakat, L. P., Lutz, M., Smith-Whitley, K., & Ohene-Frempong, K. (2005). Is treatment adherence associated with the quality of life of children with sickle cell disease? Quality of Life Research, 14, 407–414. doi:10.1007/s11136-004-5328-0.
Barakat, L. P., Patterson, C. A., Daniel, L. C., & Dampier, C. (2008). Quality of life among adolescents with sickle cell disease: Mediation of pain by internalizing symptoms and parenting stress. Health and Quality of Life Outcomes, 6, 60–69. doi:10.1186/1477-7525-6-60.
Barakat, L. P., Patterson, C. A., Weinberger, B. S., Simon, K., Gonzalez, E. R., & Carlton, D. (2007). A prospective study of the role of coping and family functioning in health outcomes for adolescents with sickle cell disease. Journal of Pediatric Hematology Oncology, 29, 752–760. doi:10.1097/MPH.0b013e318157fdac.
Barakat, L. P., Pulgaron, E. R., & Daniel, L. C. (2009). Positive psychology in pediatric psychology. In M. C. Roberts & R. G. Steele (Eds.), Handbook of pediatric psychology (4th ed., pp. 763–773). New York, NY: Guilford Press.
Barakat, L. P., Schwartz, L. A., Salamon, K. S., & Radcliffe, J. (2010). A family-based randomized controlled trial of pain intervention for adolescents with sickle cell disease. Journal of Pediatric Hematology Oncology, 32, 540–547. doi:10.1097/MPH.0b013e3181e793f9.
Barbarin, O. A. (1999). Do parental coping, involvement, religiosity, and racial identity mediate children’s psychological adjustment to sickle cell disease? Journal of Black Psychology, 25, 391–426. doi:10.1177/0095798499025003008.
Barbarin, O. A., & Christian, M. (1999). The social and cultural context of coping with sickle cell disease: I. A review of biomedical and psychosocial issues. Journal of Black Psychology, 25, 277–293. doi:10.1177/0095798499025003002.
Barbarin, O. A., Whitten, C. F., Bond, S., & Conner-Warren, R. (1999). The social and cultural context of coping with sickle cell disease: II. The role of financial hardship in adjustment to sickle cell disease. Journal of Black Psychology, 25, 294–315. doi:10.1177/0095798499025003003.
Baron, R. M., & Kenny, D. A. (1986). The moderator–mediator variable distinction in social psychological research: Conceptual, strategic, and statistical considerations. Journal of Personality and Social Psychology, 51(6), 1173–1182. doi:10.1037/00223514.51.6.1173.
Bisignano, A., & Bush, J. P. (2004). Children’s appraisals of stressful medical procedures: Developmentally specific interventions to facilitate adaptive coping. Journal of Psychological Practice, 10, 1–24.
Burlew, K., Telfair, J., Colangelo, L., & Wright, E. C. (2000). Factors that influence adolescent adaptation to sickle cell disease. Journal of Pediatric Psychology, 25, 287–299. doi:10.1093/jpepsy/25.5.287.
Carroll, L. J., Cassidy, J., & Cote, P. (2006). The role of pain coping strategies in prognosis after whiplash injury: Passive coping predicts slowed recovery. Pain, 124, 18–26. doi:10.1016/j.pain.2006.03.012.
Casey, R., Brown, R. T., & Bakeman, R. (2000). Predicting adjustment in children and adolescents with sickle cell disease: A test of the risk-resistance-adaptation model. Rehabilitation Psychology, 45, 155–178. doi:10.1037/0090-5550.45.2.155.
Clay, O., & Telfair, J. (2007). Evaluation of a disease-specific self-efficiency instrument in adolescents with sickle cell disease and its relationship to adjustment. Child Neuropsychology, 13, 188–203. doi:10.1080/0927040600770746.
Dahlbeck, D. T., & Lightsey, O. R. (2008). Generalized self-efficacy, coping, and self-esteem as predictors of psychological adjustment among children with disabilities or chronic illnesses. Children’s Health Care, 37, 293–315. doi:10.1080/02739610802437509.
de Castro, E. K., & Moreno-Jimenez, B. (2007). Resilience in children with physical chronic illness: Theoretical aspects. Psicologia em Estudo, 12, 81–86. doi:10.1590/S141373722007000100010.
Fearnow-Kenney, M., & Kliewer, W. (2000). Threat appraisal and adjustment among children with cancer. Journal of Psychosocial Oncology, 18, 1–17. doi:10.1300/J077v18n03_01.
Folkman, S., Lazarus, R. S., Dunkel-Schetter, C., DeLongis, A., & Gruen, R. J. (1986). Dynamics of a stressful encounter: Cognitive appraisal, coping, and encounter outcomes. Journal of Personality and Social Psychology, 50, 992–1003. doi:10.1037/0022-3514.50.5.992.
Folkman, S., Lazarus, R. S., Gruen, R. J., & DeLongis, A. (1986). Appraisal, coping, health status, and psychological symptoms. Journal of Personality and Social Psychology, 50, 571–579. doi:10.1037/0022-3514.50.3.571.
Gil, K. M., Abrams, M. R., Phillips, G., & Williams, D. A. (1992). Sickle cell disease pain: II. Predicting health care use and activity level at 9-month follow-up. Journal of Consulting and Clinical Psychology, 60, 267–273. doi:10.1037/0022-006X.60.2.267.
Gil, K. M., Anthony, K. K., Carson, J. W., Redding-Lallinger, R., Daeschner, C. W., & Ware, R. E. (2001). Daily coping practice predicts treatment effects in children with sickle cell disease. Journal of Pediatric Psychology, 26, 163–173. doi:10.1093/jpepsy/26.3.163.
Gil, K. M., Thompson, R. J., Keith, B. R., Tota-Faucette, M., Noll, S., & Kinney, T. R. (1993). Sickle cell disease pain in children and adolescents: Change in pain frequency and coping strategies over time. Journal of Pediatric Psychology, 18, 621–637. doi:10.1093/jpepsy/18.5.621.
Gil, K. M., Williams, D. A., Thompson, R. J., & Kinney, T. R. (1991). Sickle cell disease in children and adolescents: The relation of child and parent pain coping strategies to adjustment. Journal of Pediatric Psychology, 16, 643–663. doi:10.1093/jpepsy/16.5.643.
Grewal, R., Cote, J. A., & Baumgartner, H. (2004). Multicollinearity and measurement error in structural equation models: Implications for theory testing. Marketing Science, 23, 519–529. doi:10.1287/mksc.1040.0070.
Hasan, S. P., Hashmi, S., Alhassen, M., Lawson, W., & Castro, O. (2003). Depression in sickle cell disease. Journal of National Medical Association, 95, 533–537. doi:10.1080/10673220127896.
Huguet, A., Eccleston, C., Miro, J., & Gauntlett-Gilbert, J. (2009). Young people making sense of pain: Cognitive appraisal, function, and pain in 8–16 year old children. European Journal of Pain, 13, 751–759. doi:10.1016/j.ejpain.2008.07.011.
Kliewer, W., & Lewis, H. A. (1995). Family influences on coping processes in children and adolescents with sickle cell disease. Journal of Pediatric Psychology, 20(4), 511–525. doi:10.1093/jpepsy/20.4.511.
Knofczynski, G. T., & Mundfrom, D. (2008). Sample sizes when using multiple linear regression for prediction. Educational and Psychological Measurement, 68, 431–442. doi:10.1177/0013164407310131.
Lemanek, K. L., & Ranalli, M. (2009). Sickle cell disease. In M. C. Roberts & R. G. Steele (Eds.), Handbook of pediatric psychology (4th ed., pp. 303–318). New York, NY: The Guilford Press.
Lengua, L. J., & Long, A. C. (2002). The role of emotionality and self-regulation in the appraisal-coping process: Tests of direct and moderating effects. Journal of Applied Developmental Psychology, 23, 471–493. doi:10.1016/S0193-3973(02)00129-6.
Lewis, H. A., & Kliewer, W. (1996). Hope, coping, and adjustment among children with sickle cell disease: Tests of mediator and moderator models. Journal of Pediatric Psychology, 21(1), 25–41. doi:10.1093/jpepsy/21.1.25.
National Heart, Lung, and Blood Institute. (2002). The management of sickle cell disease. Bethesda, MD: National Institutes of Health. NIH Publication 02-2117.
Nicolaou, D. C. (2005). Measurement of quality of life among two pediatric chronic illness groups: Sickle cell disease and brain tumors. Unpublished master’s thesis, Drexel University, Philadelphia, PA.
Noll, R. B., Reiter-Purtill, J., Vannatta, K., Gerhardt, C. A., & Short, A. (2007). Peer relationships and emotional well-being of children with sickle cell disease: A controlled replication. Child Neuropsychology, 13, 173–187. doi:10.1080/09297040500473706.
Noll, R. B., Vannatta, K., Koontz, K., Kalinyak, K., Bukowski, W. M., & Davies, W. H. (1996). Peer relationships and emotional well-being of youngsters with sickle cell disease. Child Development, 67, 423–436. doi:10.1111/j.1467-8624.1996.tb01743.x.
Oliver-Carpenter, G., Barach, I., Crosby, L.E., Valenzuela, Mitchell, M. J. (2011). Disease management, coping, and functional disability in pediatric sickle cell disease. Journal of the National Medical Association, 103(2), 131–137. Retrieved from http://www.nmanet.org/.
Pulgarón, E. R., Salamon, K. S., Patterson, C. A., & Barakat, L. P. (2010). A problem-solving intervention for children with persistent asthma: A pilot of a randomized trial at a pediatric summer camp. Journal of Asthma, 47, 1031–1039. doi:10.1080/02770903.2010.514633.
Reynolds, C. R., & Kamphaus, R. W. (2002). The clinician’s guide to the Behavior Assessment System for Children (BASC). New York, NY: Guilford Press.
Reynolds, C. R., & Kramphaus, R. W. (1992). Behavior Assessment System for Children (BASC). Circle Pines, MN: American Guidance Services.
Reynolds, C. R., & Ou, S. R. (2003). Promoting resilience through early childhood intervention. In S. S. Luthar (Ed.), Resilience and vulnerability: Adaptation in the context of childhood adversities (pp. 436–459). New York, NY: Cambridge University Press.
Rodriguez Parra, M., Esteve Zarazaga, R. M., & Lopez Martinez, A. E. (2000). Emotional repression and coping strategies in cancer chronic pain. Psicothema, 12, 339–345. Retrieved from http://www.psicothema.com/english/.
Scharloo, M., Kaptein, A., Weinman, J., Hazes, J., Willems, L., Bergman, W., et al. (1998). Illness perceptions, coping and functioning in patients with rheumatoid arthritis, chronic obstructive pulmonary disease and psoriasis. Journal of Psychosomatic Research, 44, 573–585. doi:10.1016/S0022-3999(97)00254-7.
Schouws, S., Dekker, J., Tuynman-Qua, H., Kwakman, H., & de Jonghe, F. (2001). Relation between quality of life and coping and social behaviour in depression. European Journal of Psychiatry, 15(1), 49–56. Retrieved from http://scielo.isciii.es/scielo.php?script=sci_serial&pid=0213-6163&lng=en&nrm=iso.
Skinner, E. A., & Zimmer-Gembeck, M. J. (2007). The development of coping. Annual Review of Psychology, 58, 119–144. doi:10.1146/annurev.psych.58.110405.085705.
Snyder, C., Harris, C., Anderson, J. R., Holleran, S. A., Irving, L. M., Sigmon, S. T., et al. (1991). The will and the ways: Development and validation of an individual-differences measure of hope. Journal of Personality and Social Psychology, 60, 570–585. doi:10.1037/0022-3514.60.4.570.
Snyder, C., Hoza, B., Pelham, W. E., Rapoff, M., Ware, L., Danovsky, M., et al. (1997). The development and validation of the Children’s Hope Scale. Journal of Pediatric Psychology, 22, 399–421. doi:10.1093/jpepsy/22.3.399.
Telfair, J., Alexander, L. R., Loosier, P. S., Alleman-Velez, P. L., & Simmons, J. (2004). Providers’ perspectives and beliefs regarding transition to adult care for adolescents with sickle cell disease. Journal of Health Care for the Poor and Underserved, 15, 443–461. doi:10.1353/hpu.2004.0049.
Telfair, J., Ehiri, J. E., Loosier, P. S., & Baskin, M. L. (2004). Transition to adult care for adolescents with sickle cell disease: Results of a national survey. International Journal of Adolescent Medicine and Health, 16, 47–64. Retrieved from http://www.degruyter.de/journals/ijamh/detailEn.cfm.
Telfair, J., Myers, J., & Drezner, S. (1994). Transfer as a component of the transition of adolescents with sickle cell disease to adult care: Adolescent, adult, and parent perspectives. Journal of Adolescent Health, 15(7), 558-565. doi:10.1016/1054-139X(94)90139-T.
Thompson, R. J., Gil, K. M., Burbach, D. J., Keith, B. R., & Kinney, T. R. (1993). Role of child and maternal processes in the psychological adjustment of children with sickle cell disease. Journal of Consulting and Clinical Psychology, 61, 468–474. doi:10.1037/0022-006X.61.3.468.
Thompson, R. J., Gustafson, K. E., George, L. K., & Spock, A. (1994). Change over a 12-month period in the psychological adjustment of children and adolescents with cystic fibrosis. Journal of Pediatric Psychology, 19, 189–203. doi:10.1093/jpepsy/19.2.189.
Thompson, R. J., Gustafson, K. E., Gil, K. M., Godfrey, J., & Murphy, L. M. (1998). Illness specific patterns of psychological adjustment and cognitive adaptational processes in children with cystic fibrosis and sickle cell disease. Journal of Clinical Psychology, 54, 121–128. doi:10.1002/(SICI)1097-4679(199801)54:1<121:AID-JCLP14>3.0.CO;2-M.
Thompson, R. J., Gustafson, K. E., Hamlett, K. W., & Spock, A. (1992). Psychological adjustment of children with cystic fibrosis: The role of child cognitive processes and maternal adjustment. Journal of Pediatric Psychology, 17, 741–755. doi:10.1093/jpepsy/17.6.741.
Walker, L. S., Smith, C. A., Garber, J., & Claar, R. L. (2005). Testing a model of pain appraisal and coping in children with chronic abdominal pain. Health Psychology, 24, 364–374. doi:10.1037/0278-6133.24.4.364.
Walker, L. S., Smith, C. A., Garber, J., & Claar, R. L. (2007). Appraisal and coping with daily stressors by pediatric patients with chronic abdominal pain. Journal of Pediatric Psychology, 32, 206–216. doi:10.1093/jpepsy/jsj124.
Wallander, J. L., Varni, J. W., Babani, L., Banis, H. T., & Wilcox, K. T. (1989). Family resources as resistance factors for psychological maladjustment in chronically ill and handicapped children. Journal of Pediatric Psychology, 14, 157–173. doi:10.1093/jpepsy/14.2.157.
Acknowledgments
This project was supported in part through a Comprehensive Sickle Cell Center Grant P60-HL-62148. The authors wish to thank the patients and their families of the Marian Anderson Sickle Cell Center for their participation, and the pediatric research team at Drexel University for their dedication to this project.
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Ziadni, M.S., Patterson, C.A., Pulgarón, E.R. et al. Health-Related Quality of Life and Adaptive Behaviors of Adolescents with Sickle Cell Disease: Stress Processing Moderators. J Clin Psychol Med Settings 18, 335–344 (2011). https://doi.org/10.1007/s10880-011-9254-3
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DOI: https://doi.org/10.1007/s10880-011-9254-3