Multiple sclerosis (MS) is a chronic, progressive, and often debilitating disease of the central nervous system, for which there is no cure. This article provides insight into the experiences of adolescents with MS and the role of their peer relationships. Through the use of grounded theory, a preliminary theoretical model was developed for understanding the psychosocial experiences of these adolescents. Central to this framework is the interplay between the adolescents' grief and their peer relationships. Social, emotional, and cognitive manifestations of grief were expressed in response to the loss of health. Cyclical movements through grief and acceptance were demonstrated as the adolescents experienced a variety of secondary losses. Dynamic peer relationships either facilitated or impeded this process. Insight can be garnered from this study for further research and the development of multidisciplinary resources for this unique group of adolescents.
Adams, C.D., Streisand, R.M., Zawacki, T., & Joseph, K.E. (2002). Living with a chronic illness: A measure of social functioning for children and adolescents. Journal of Pediatric Psychology, 27(7), 593-605.
2.
Balk, D.E., & Corr, C.A. (2001). Bereavement during adolescence: A review of research . In M. S. Stroebe, R. O. Hansson, W. Stroebe , & H. Schut (Eds.), Handbook of bereavement research: Consequences, coping, and care (pp. 199-218). Washington : American Psychological Association.
3.
Banwell, B., Ghezzi, A., Bar-Or, A., Mikaeloff, Y., & Tardieu, M. (2007). Multiple sclerosis in children: Clinical diagnosis, therapeutic strategies, and future directions. Lancet Neurology , 6(10), 887-902.
4.
Banwell, B.L. (2004). Pediatric multiple sclerosis. Current Neurology and Neurosciences Reports, 4, 245-252.
5.
Boekaerts, M., & Röder, I. (1999). Stress, coping, and adjustment in children with a chronic disease: A review of the literature. Disability and Rehabilitation, 21(7), 311-337.
6.
Boss, P., & Couden, B.A. (2002). Ambiguous loss from chronic physical illness: Clinical interventions with individuals, couples, and families. Journal of Clinical Psychology, 8(11), 1351-1360.
7.
Boyd, J.R., & MacMillan, L.J. (2000). Multiple sclerosis in childhood: Understanding and caring for children with an "adult" disease. Axon, 22(2), 15-21.
8.
Boyd, J.R., & MacMillan, L.J. (2005). Experiences of children and adolescents living with multiple sclerosis. Journal of Neuroscience Nursing, 37(6), 334-342.
9.
Brown, R.T., & Macias, M. (2001). Chronically ill children and adolescents. In J. N. Hughes, A. M. LaGreca, & J. C. Conoley (Eds.), Handbook of psychological services for children and adolescents (pp. 353-372). New York: Oxford University Press.
10.
Bukowski, W. M., Newcomb, A. F., & Hartup, W. W. (Eds.) (1996). The company they keep: Friendship in childhood and adolescence. New York: Cambridge University Press.
11.
Charmaz, K. (2002). Qualitative interviewing and grounded theory analysis . In J. F. Gubrium & J. A. Holstein (Eds.), Handbook of interview research: Context & method. Thousand Oaks, CA: Sage.
12.
Corr, C.A. (2000). What do we know about grieving children and adolescents ? In. K. J. Doka (Ed.), Living with grief: Children, adolescents, and loss (pp. 21-30). Washington, DC: Hospice Foundation of America.
13.
Drotar, D. (2002), Reflections on interdisciplinary collaboration in the new millennium: Perspectives and challenges. Developmental and Behavioral Pediatrics, 23(3), 175-180.
14.
Erikson, E.H. (1968). Identity: Youth and crisis. New York: W. W. Norton.
15.
Farmer, J.E., Clark, M.J., & Marien, W.E. (2003). Building systems of care for children with chronic health conditions. Rehabilitation Psychology, 48(4), 242-249.
16.
Fleming, S.J., & Adolph, R. (1986). Helping bereaved adolescents: Needs and responses . In C. A. Corr & J. N. McNeil (Eds.), Adolescence and death (pp. 97-118). New York: Springer.
17.
Gadoth, N. (2003). Multiple sclerosis in children. Brain & Development, 25, 229-232.
18.
Ghezzi, A., Pozzilli, C., Liguori, M., Marrosu, M.G., Milani, N., Milanese, C., et al. (2002). Prospective study of multiple sclerosis with early onset. Multiple Sclerosis, 8, 115-118.
19.
Glaser, B.G., & Strauss, A.L. (1967). The discovery of grounded theory. Chicago: Aldine.
20.
Helsen, M., Vollebergh, W., & Meeus, W. (2000). Social support from parents and friends and emotional problems in adolescence. Journal of Youth and Adolescence , 29(3), 319-335.
21.
Hogan, N., & DeSantis, L. (1992). Adolescent sibling bereavement: An ongoing attachment . Qualitative Health Research, 2, 159-177.
22.
Kahn, A.M. (1995). Coping with fear and grieving. In I. M. Lubkin (Ed.), Chronic illness: Impact and interventions (3rd ed., pp. 465-478). Boston: Jones and Bartlett.
23.
Kalb, R.C., DiLorenzo, T.A., LaRocca, N.G., Caruso, L.S., Shawaryn, A., Elkin, M.D., et al. (1999). The impact of early-onset multiple sclerosis on cognitive and psychosocial indices [Electronic version]. International Journal of MS Care, 1(1). Retrieved February 5, 2008, from http://www.mscare.org/cmsc/images/pdf/ijmsc-1999-sep.pdf
24.
Kuntz, B. (1991). Exploring the grief of adolescents after the death of a parent. Journal of Child & Adolescent Psychiatric & Mental Health Nursing, 4(3), 105-109.
25.
La Greca, A., Bearman, K., & Moore, H. (2002). Peer relations of youth with pediatric conditions and health risks: Promoting social support and healthy lifestyles. Developmental and Behavioral Pediatrics, 23(4), 271-279.
26.
Mash, E.J., & Dozois, D.J.A. (2003). Child psychopathology: A developmental-systems perspective. In E. J. Mash & R. A. Barkley (Eds.), Child psychopathology (2nd ed., pp. 3-71). New York: Guilford Press.
27.
Meijer, S.A., Sinnema, G., Bijstra, J.O., Mellenbergh, G.J., & Wolters, W.H.G. (2000). Social functioning in children with a chronic illness. Journal of Child Psychology and Psychiatry , 41(3), 309-317.
28.
Morrow, S.L. (2005). Quality and trustworthiness in qualitative research in counseling psychology. Journal of Counseling Psychology , 52(2), 250-260.
29.
Multiple Sclerosis Society of Canada. (2004 ). Frequently asked questions. Retrieved September 23, 2004, from http://www.mssociety.ca/en/information/faq.htm
30.
Ness, J.M., Chabas, D., Sadovnick, A.D., Pohl, D., Banwell, B., & Weinstock-Guttman, B. (2007). Clinical features of children and adolescents with multiple sclerosis. Neurology , 68(Suppl 2), 37-45.
31.
O'Toole, D. (1995). Facing change: Falling apart and coming together again in the teen years. Burnsville, NC: Compassion Press.
32.
Parry, C., & Chesler, M.A. (2005). Thematic evidence of psychosocial thriving in childhood cancer survivors. Qualitative Health Research, 15, 1055-1073.
33.
Rubin, K.H., Bukowski, W., & Parker, J.G. (1998). Peer interactions, relationships, and groups. In W. Damon (Ed.), Handbook of child psychology (pp. 619-700). New York: Wiley.
34.
Sällfors, C., Fasth, A., & Hallberg, L.R. -M. (2002). Oscillating between hope and despair: A qualitative study. Child: Care, Health & Development, 28(6), 495-505.
35.
Sharoff, K. (2004). Coping skills therapy for managing chronic and terminal illness. New York: Springer .
36.
Shiu, S. (2001). Issues in the education of students with chronic illness. International Journal of Disability, Development and Education, 48(3), 269-281.
37.
Stevens, M.M., & Dunsmore, J.C. (1996) Adolescents who are living with a life-threatening illness. In C. A. Corr & D. E. Balk (Eds.), Handbook of adolescent death and bereavement (pp. 107-135). New York: Springer.
38.
Strauss, A., & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory (2nd ed.). Newbury Park, CA: Sage.
39.
Wallander, J.L., & Robinson, S.L. (1999). Chronic medical illness . In R. T. Ammerman, C. G. Last, & M. Hersen (Eds.), Handbook of prescriptive treatments of children and adolescents (2nd ed., pp. 364-380). Boston: Allyn & Bacon.
40.
Werner-Beland, J.A. (1980). Grief response to long-term illness & disability . Reston, VA: Reston.
41.
Wise, B.V. (2002). In their own words: The lived experience of pediatric liver transplantation. Qualitative Health Research, 12, 74-90.
42.
Worden, J.M. (1996). Children and grief. New York : Guilford Press.
43.
Worden, J.M. (2002). Grief counseling and grief therapy (3rd ed.). New York: Springer.
44.
World Health Organization. (2002). Towards a common language for functioning, disability and health: ICF. Geneva, Switzerland: Author. Retrieved September 25, 2004, from http://www.3.who.int/icf/beginners/bg.pdf
