Abstract
We examined parental experience of having a child with obsessive-compulsive disorder (OCD) in 62 parent–child dyads. Youth with a primary diagnosis of OCD and their parent(s) were administered the CY-BOCS jointly by a trained clinician. Parents completed several measures about their child’s OCD-related impairment and accommodation, emotional and behavioral functioning, parental distress, caregiver stress, and parental experiences of having a child with OCD. Results indicated that parents of children with OCD are considerably distressed about their child’s condition. As expected, negative parental experiences (e.g., anxiety about child’s condition, uncertainty about their future) were directly related to OCD symptom severity and impairment, as well as child internalizing and externalizing problems, family accommodation of symptoms, and caregiver strain. The presence of emotional resources was negatively related to most outcomes, although some of these relationships did not achieve statistical significance. The presence of internalizing symptoms mediated the relationship between parental experiences and parental distress. Given these findings, addressing parental experiences as part of a family based cognitive-behavioral treatment program for pediatric OCD may help reduce parental distress and improve patient prognosis.
Similar content being viewed by others
References
Abramowitz, J. S., Whiteside, S. P., & Deacon, B. J. (2005). The effectiveness of treatment for pediatric Obsessive-Compulsive Disorder: A meta-analysis. Behavior Therapy, 36, 55–63. doi:10.1016/S0005-7894(05)80054-1.
Achenbach, T. M. (1991). Manuel for the child behavior checklist/4–18 and 1991 profile. Burlington: University of Vermont, Department of Psychiatry.
Amir, N., Freshman, M., & Foa, E. B. (2000). Family distress and involvement in relatives of obsessive-compulsive disorder patients. Journal of Anxiety Disorders, 14, 209–217. doi:10.1016/S0887-6185(99)00032-8.
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, 1173–1182. doi:10.1037/0022-3514.51.6.1173.
Barrett, P., Shortt, A., & Healy, L. (2002). Do parent and child behaviours differentiate families whose children have obsessive-compulsive disorder from other clinic and non-clinic families? Journal of Child Psychology and Psychiatry, and Allied Disciplines, 43, 597–607. doi:10.1111/1469-7610.00049.
Blanco, C., Olfson, M., Stein, D. J., Simpson, H. B., Gameroff, M. J., & Narrow, W. H. (2006). Treatment of obsessive-compulsive disorder by U.S. psychiatrists. The Journal of Clinical Psychiatry, 67, 946–951.
Bonner, M. J., Hardy, K. K., Guill, A. B., McLaughlin, C., Schweitzer, H., & Carter, K. (2006). Development and validation of the parent experience of child illness. Journal of Pediatric Psychology, 31, 310–321. doi:10.1093/jpepsy/jsj034.
Bonner, M. J., Hardy, K. K., Willard, V. W., & Hutchinson, K. C. (2007). Psychosocial functioning of fathers as primary caregivers of pediatric oncology patients. Journal of Pediatric Psychology, 32, 851–856. doi:10.1093/jpepsy/jsm011.
Boulet, J., & Boss, M. V. (1991). Reliability and validity of the Brief Symptom Inventory. Psychological Assessment, 3, 433–437. doi:10.1037/1040-3590.3.3.433.
Brannan, A. M., & Heflinger, C. A. (2001). Distinguishing caregiver strain from psychological distress: Modeling the relationships among child, family, and caregiver variables. Journal of Child and Family Studies, 10, 405–418. doi:10.1023/A:1016705306848.
Brannan, A. M., Heflinger, C. A., & Bickman, L. (1997). The Caregiver Strain Questionnaire: Measuring the impact on the family of living with a child with serious emotional problems. Journal of Emotional and Behavioral Disorders, 5, 212–222.
Burke, C., Burke, J. D., Jr., Regier, D. A., & Rae, D. S. (1990). Age at onset of selected mental disorders in five community populations. Archives of General Psychiatry, 47, 511–518.
Calvocoressi, L., Lewis, B., Harris, M., Trufan, S. J., Goodman, W. K., McDougle, C. J., et al. (1995). Family accommodation in obsessive compulsive disorder. The American Journal of Psychiatry, 152, 441–443.
Chambless, D. L., Bryan, A. D., Aiken, L. S., Steketee, G., & Hooley, J. M. (2001). Predicting expressed emotion: A study with families of obsessive-compulsive and agoraphobic outpatients. Journal of Family Psychology, 15, 225–240. doi:10.1037/0893-3200.15.2.225.
Cooper, M. (1996). Obsessive compulsive disorder: Effects on family members. The American Journal of Orthopsychiatry, 66, 296–304. doi:10.1037/h0080180.
Crawford, M. A., & Manassis, K. (2001). Familial predictors of treatment outcome in childhood anxiety disorders. Journal of the American Academy of Child and Adolescent Psychiatry, 40, 1182–1189. doi:10.1097/00004583-200110000-00012.
Derisley, J., Libby, S., Clark, S., & Reynolds, S. (2005). Mental health, coping and family-functioning in parents of young people with obsessive-compulsive disorder and with anxiety disorders. The British Journal of Clinical Psychology, 44, 439–444. doi:10.1348/014466505X29152.
Derogatis, L. R., & Melisaratos, N. (1983). The Brief Symptom Inventory: An introductory report. Psychological Medicine, 13, 595–605.
Douglass, H. M., Moffitt, T. E., Dar, R., McGee, R., & Silva, P. (1995). Obsessive compulsive disorder in a birth cohort of 18-year-olds: Prevalence and predictors. Journal of the American Academy of Child and Adolescent Psychiatry, 34, 1424–1431. doi:10.1097/00004583-199511000-00008.
Fadden, G., Bebbington, P., & Kuipers, L. (1987). The burden of care: The impact of functional psychiatric illness on the patient’s family. The British Journal of Psychiatry, 150, 285–292.
Freeman, J. B., Garcia, A. M., Fucci, C., Karitani, M., Miller, L., & Leonard, H. L. (2003). Family-based treatment of early-onset obsessive-compulsive disorder. Journal of Child Adolescent Psychopharmacology, 13S1, S71–S80.
Geffken, G. R., Storch, E. A., Duke, D. C., Monaco, L., Lewin, A. B., & Goodman, W. K. (2006). Hope and coping in family members of patients with obsessive-compulsive disorder. Journal of Anxiety Disorders, 20, 614–629. doi:10.1016/j.janxdis.2005.07.001.
Geller, D. A. (2006). Obsessive-compulsive and spectrum disorders in children and adolescents. The Psychiatric Clinics of North America, 29, 353–370. doi:10.1016/j.psc.2006.02.012.
Goodman, W. K., Price, L. H., Rasmussen, S. A., Mazure, C., et al. (1989). The Yale-Brown Obsessive Compulsive Scale: Validity. Archives of General Psychiatry, 46, 1006–1011.
Hastings, R. P., Kovshoff, H., Brown, T., Ward, N. J., Espinosa, F. D., & Remington, B. (2005). Coping strategies in mothers and fathers of preschool and school-age children with autism. Autism, 9, 377–391. doi:10.1177/1362361305056078.
Hibbs, E. D., Hamburger, S. D., Lenane, M., Rapoport, J. L., Kruesi, M. J., Keysor, C. S., et al. (1991). Determinants of expressed emotion in families of disturbed and normal children. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 32, 757–770. doi:10.1111/j.1469-7610.1991.tb01900.x.
Kang, E. J., Brannan, A. M., & Heflinger, C. A. (2005). Racial differences in responses to the Caregiver Strain Questionnaire. Journal of Child and Family Studies, 14, 43–56. doi:10.1007/s10826-005-1112-1.
Kazak, A. E., McClure, K. S., Alderfer, M. A., Hwang, W., Crump, T. A., Le, L. T., et al. (2004). Cancer-related parental beliefs: The Family Illness Beliefs Inventory. Journal of Pediatric Psychology, 29, 531–542. doi:10.1093/jpepsy/jsh055.
Klassen, A. F., Miller, A., & Fine, S. (2004). Health-related quality of life in children and adolescents who have a diagnosis of attention-deficit/hyperactivity disorder. Pediatrics, 114, e541–e547. doi:10.1542/peds.2004-0844.
Lenane, M. C., Swedo, S. E., Leonard, H. L., Pauls, D., Sceery, W., & Rapoport, J. L. (1990). Psychiatric disorders in first degree relatives of children and adolescents with obsessive compulsive disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 29, 407–412. doi:10.1097/00004583-199005000-00012.
Merlo, L. J., Lehmkuhl, H., Geffken, G. R., & Storch, E. A. (in press). Decrease in family accommodation is associated with improved cognitive-behavioral therapy outcome in pediatric obsessive-compulsive disorder. Journal of Consulting and Clinical Psychology.
Merlo, L. J., Storch, E. A., Murphy, T. K., & Geffken, G. R. (2005). Assessment of pediatric OCD: A critical review of current methodology. Child Psychiatry and Human Development, 36, 195–214. doi:10.1007/s10578-005-4079-7.
Pauls, D. L., I. I., Alsobrook, J. P., Goodman, W., Rasmussen, S., & Leckman, J. F. (1995). A family study of obsessive-compulsive disorder. The American Journal of Psychiatry, 152, 76–84.
Pediatric Obsessive-Compulsive Disorder Treatment Study Team. (2004). Cognitive-behavioral therapy, sertraline, and their combination for children and adolescents with obsessive-compulsive disorder: The Pediatric Obsessive-Compulsive Disorder Treatment Study Randomized Controlled Trial. Journal of the American Medical Association, 292, 1969–1976. doi:10.1001/jama.292.16.1969.
Piacentini, J., Bergman, R. L., Jacobs, C., McCracken, J. T., & Kretchman, J. (2002). Open trial of cognitive behavior therapy for childhood obsessive-compulsive disorder. Journal of Anxiety Disorders, 16, 207–219. doi:10.1016/S0887-6185(02)00096-8.
Piacentini, J., Bergman, R. L., Keller, M., & McCracken, J. (2003). Functional impairment in children and adolescents with obsessive-compulsive disorder. Journal of Child and Adolescent Psychopharmacology, 13S-1, S61–S69.
Piacentini, J. C., & Jaffer, M. (1999). Measuring functional impairment in youngsters with OCD: Manual for the Child OCD Impact Scale (COIS). Los Angeles: UCLA Department of Psychiatry.
Pinto, A., Mancebo, M. C., Eisen, J. L., Pagano, M. E., & Rasmussen, S. A. (2006). The Brown Longitudinal Obsessive Compulsive Study: Clinical features and symptoms of the sample at intake. The Journal of Clinical Psychiatry, 67, 703–711.
Scahill, L., Riddle, M. A., McSwiggin-Hardin, M., Ort, S. I., King, R. A., Goodman, W. K., et al. (1997). Children’s Yale-Brown Obsessive Compulsive Scale: Reliability and validity. Journal of the American Academy of Child and Adolescent Psychiatry, 36, 844–852. doi:10.1097/00004583-199706000-00023.
Steketee, G. (1997). Disability and family burden in obsessive-compulsive disorder. Canadian Journal of Psychiatry, 42, 919–928.
Stengler-Wenzke, K., Trosbach, J., Dietrich, S., & Angermeyer, M. C. (2004a). Coping strategies used by the relatives of people with obsessive-compulsive disorder. Journal of Advanced Nursing, 48, 35–42. doi:10.1111/j.1365-2648.2004.03166.x.
Stengler-Wenzke, K., Trosbach, J., Dietrich, S., & Angermeyer, M. C. (2004b). Experience of stigmatization by relatives of patients with obsessive compulsive disorder. Archives of Psychiatric Nursing, 18, 88–96. doi:10.1016/j.apnu.2004.03.004.
Storch, E. A., Murphy, T. K., Geffken, G. R., Soto, O., Sajid, M., Allen, P., et al. (2004). Psychometric evaluation of the Children’s Yale-Brown Obsessive Compulsive Scale. Psychiatry Research, 129, 91–98. doi:10.1016/j.psychres.2004.06.009.
Storch, E. A., Geffken, G. R., Merlo, L. J., Jacob, M. L., Murphy, T. K., Goodman, W. K., et al. (2007a). Family accommodation in pediatric obsessive-compulsive disorder. Journal of Clinical Child and Adolescent Psychology, 36, 207–216.
Storch, E. A., Geffken, G. R., Merlo, L. J., Mann, G., Duke, D., Munson, M., et al. (2007b). Cognitive-Behavioral therapy for pediatric obsessive-compulsive disorder: Comparison of intensive and weekly approaches. Journal of the American Academy of Child and Adolescent Psychiatry, 46, 469–478. doi:10.1097/chi.0b013e31803062e7.
Valleni-Basile, L. A., Garrison, C. Z., Jackson, K. L., Waller, J. L., McKeown, R. E., Addy, C. L., et al. (1995). Family and psychosocial predictors of obsessive-compulsive disorder in a community sample of young adolescents. Journal of Child and Family Studies, 4, 193–206. doi:10.1007/BF02234095.
Yucelen, A. G., Rodopman-Arman, A., Topcuoglu, V., Yazgan, M. Y., & Fisek, G. (2006). Interrater reliability and clinical efficacy of Children’s Yale-Brown Obsessive-Compulsive Scale in an outpatient setting. Comprehensive Psychiatry, 47, 48–53. doi:10.1016/j.comppsych.2005.04.005.
Zohar, A. H. (1999). The epidemiology of obsessive-compulsive disorder in children and adolescents. Child and Adolescent Psychiatric Clinics of North America, 8, 445–460.
Acknowledgments
We acknowledge the efforts of the following individuals: Wayne K. Goodman, Marni Jacob, Valerie Crawford, and Joseph Brand. This study was supported by a grant to Dr. Storch from the National Institute of Health (L40 MH081950-02).
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Storch, E.A., Lehmkuhl, H., Pence, S.L. et al. Parental Experiences of Having a Child with Obsessive-Compulsive Disorder: Associations with Clinical Characteristics and Caregiver Adjustment. J Child Fam Stud 18, 249–258 (2009). https://doi.org/10.1007/s10826-008-9225-y
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10826-008-9225-y