Psychosocial functioning in youth with barth syndrome

Children's Health Care

Volumn 38, Issue 2, 2009, Pages 137-156

  Storch, Eric A ^a,f   Keeley, Mary ^b   Merlo, Lisa J ^b   St Amant, Jay B ^c   Jacob, Marni ^d   Storch, Jill F ^c   Spencer, Carolyn ^e   Byrne, Barry J ^b  

^a UNIVERSITY OF SOUTH FLORIDA   (United States)

^b UNIVERSITY OF FLORIDA COLLEGE OF MEDICINE   (United States)

^c UNIVERSITY OF FLORIDA   (United States)

^d University of Georgia   (United States)

^e BOSTON CHILDREN S HOSPITAL   (United States)

^f UNIVERSITY OF SOUTH FLORIDA   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ACADEMIC ACHIEVEMENT; ADAPTIVE BEHAVIOR; ADOLESCENT; ADULT; ARTICLE; BARTH SYNDROME; BEHAVIORAL STRESS; CHILD; CHILD BEHAVIOR; CLINICAL ARTICLE; COMPARATIVE STUDY; CONTROLLED STUDY; DISEASE ASSOCIATION; EMOTION; FAMILY; FAMILY COPING; FAMILY STRESS; HEART DISEASE; HUMAN; INDEPENDENCE; JUVENILE; LONELINESS; MALE; PARENT; PARENTAL STRESS; PEER GROUP; PILOT STUDY; PRESCHOOL CHILD; QUALITY OF LIFE; RATING SCALE; SAMPLE; SCHOOL CHILD; SIBLING RELATION; SOCIAL DISABILITY; SOCIAL PROBLEM; SOCIAL PSYCHOLOGY; STRESS MANAGEMENT; SYMPTOMATOLOGY; VERBAL BEHAVIOR;

EID: 67649668770     PISSN: 02739615     EISSN: None     Source Type: Journal    
DOI: 10.1080/02739610902813344     Document Type: Article

References (38)

1. Achenbach, T. M. (1991). Manual for the Child Behavior Checklist/4-18 and 1991 profile. Burlington, VT: University of Vermont, Department of Psychiatry.
2. Achenbach, T. M., & Rescorla, L. A. (2001). Manual for the ASEBA school-age forms and profiles. Burlington, VT: University of Vermont Research Center for Children, Youth, and Families.
3. Ades, L. C, Gedeon, A. K., Wilson, M. J., Latham, M., Partington, M. W., Mulley, J. G, et al. (1993). Barth syndrome: Clinical features and confirmation of gene localisation to distal X928. American Journal of Medical Genetics, 45, 327-334.
4. Asher, S. R., & Wheeler, V. A. (1985). Children's loneliness: A comparison of rejected and neglected peer status. Journal of Consulting and Clinical Psychology, 53, 500-505.
5. Barlow, J. H., & Ellard, D. R. (2006). The psychosocial well-being of children with chronic disease, their parents, and siblings: An overview of the research evidence base. Child: Care, Health and Development, 32, 19-31.
6. Barth, P. G., Scholte, H. R., Berden, J. A., van der Klei-van Moorsel, J. M., Luyt-Houwen, I. E. M., van't Veer-Korthof, E. T., et al. (1983). An X-linked mitochondrial disease affecting cardial muscle, skeletal muscle and neutrophil leucocytes. Journal of Neurological Science, 62, 327-355.
7. Barth, P. G., Valianpour, E., Bowen, V. M., Lam, J., Duran, M., Vaz, F. M., et al. (2004). X- linked cardioskeletal myopathy and neutropenia (Barth syndrome): An update. American Journal of Medical Genetics, 126A, 349-354.
8. Barth, P. G., Wanders, R. J., Vreken, P., Janssen, G. A., Lam, J., & Bass, F. (1999). X-linked cardioskeletal myopathy and neutropenia (Barth syndrome). Journal of Inherited Metabolic Disease, 22, 555-567.
9. Bastiaansen, D., Koot, H. M., Ferdinand, R. F., & Verhulst, F. C. (2004). Quality of life in children with psychiatric disorders: Self-, parent, and clinician report. Journal of the American Academy of Child and Adolescent Psychiatry, 43, 221-230.
10. Conners, C. K. (1997). Conners' rating scales revised: Technical manual. Toronto: Multi-Health Systems Inc.
11. Dellve, L., Samuelsson, L., Tallborn, A., Fasth, A., & Hallberg, L. (2006). Stress and well-being among parents of children with rare diseases: A prospective intervention study. Journal of Advanced Nursing, 53, 392-402.
12. Derogatis, L. R., & Melisaratos, N. (1983). The Brief Symptom Inventory: An introductory report. Psychological Medicine, 13, 595-605.
13. Dunn, L., & Dunn, L. (1997). Peabody picture vocabulary test-Third edition. Bloomington, MN: Pearson Assessments.
14. Fisher, M., & Meyer, L. H. (2002). Development and social competence after two years for students enrolled in inclusive and self-contained programs. Research and Practice for Persons With Severe Disabilities, 27, 165-174.
15. Furman, W., & Buhrmester, D. (1985). Children's perceptions of the qualities of sibling relationships. Child Development, 56, 448-461.
16. Hysing, M., Elgen, I., Gillberg, C, Lie, S. A., & Lundervold, A. J. (2007). Chronic physical illness and mental health in children. Results from a large-scale population study. Journal of Child Psychology and Psychiatry, 48, 785-792.
17. Ino, T., Sherwood, W. G., Cutz, E., Benson, L. N., Rose, V., & Freedom, R. M. (1988). Dilated cardiomyopathy with neutropenia, short stature, and abnormal carnitine metabolism. Journal of Pediatrics. 113, 511-514.
18. Kelley, R. (2007). Description of Barth Syndrome. Retrieved April 8, 2008, from http://www.barth syndrome.org/CMFiles/Description-of-Barth- Syndrome-Mar200737QHA-3142007-7837.pdf.8
19. Kelley, R. I., Cheatham, J. P., Clark, B. J., Nigra, M. A., Powell, B. R., Sherwood, G. W., et al. (1991). X-linked dilated cardiomyopathy with neutropenia, growth retardation and 3-methylglutaconic aciduria. Journal of Pediatrics, 119, 738-747.
20. Kluth, P., Biklen, D., English-Sand, P., & Smukler, D. (2007). Going away to school: Stories of families who move to seek inclusive educational experiences for their children with disabilities. Journal of Disability Policy Studies, 18, 43-56.
21. Kochenderfer, B. J., & Ladd, G. W. (1997). Victimized children's responses to peers' aggression: Behaviors associated with reduced versus continued victimization. Development and Psychopathology, 9, 59-73.
22. Kovacs, M., Goldston, D., Obrosky, S., & Iyengar, S. (1992). Prevalence and predictors of pervasive noncompliance with medical treatment among youths with insulin dependent diabetes mellitus. Journal of the American Academy of Child and Adolescent Psychiatry, 31, 1112-1119.
23. Lambert, N., Nihira, K., & Leland, H. (1993). AAMR Adaptive Behavior Scale-School (2nd ed.). Austin, TX: Pro-Ed.
24. Mazzocco, M. M., Henry, A. E., & Kelly, R. I. (2007). Barth Syndrome is associated with a cognitive phenotype. Journal of Developmental and Behavioral Pediatrics, 28, 22-30.
25. Mazzacco, M. M., & Kelley, R. 1. (2001). Preliminary evidence for a cognitive phenotype in Barth syndrome. American Journal of Medical Genetics, 102, 372-378.
26. Montagnino, B. A., & Maruicio, R. V. (2004). The child with a tracheostomy and gastrostomy: Parental stress and coping in the homeA pilot study. Pediatric Nursing, 30, 373-401.
27. Peterson, C. A. (1989). Review of the Brief Symptom Inventory. In J. C. Conoley & J. J. Kramer (Eds.), The tenth mental measurement yearbook (pp. 112-113). Lincoln, NE: Buros Institute of Mental Measurements.
28. Plant, K. M., & Sanders, M. R. (2007). Predictors of care-giver stress in families of preschool-aged children with developmental disabilities. Journal of Intellectual Disability Research, 51, 109-124.
29. Raina, P., O'Donnell, M., Rosenbaum, P., Brehaut, J., Walter, S. D., Russell, D., et al. (2005). The health and well-being of caregivers of children with cerebral palsy. Pediatrics, 115, 626-636.
30. Silver, E. J., Bauman, L. J., & Ireys, H. T. (1995). Relationships of self-esteem and efficacy to psychological distress in mothers of children with chronic physical illnesses. Health Psychology, 14, 333-340.
31. Streisand, R., Braniecki, S., Tercyak, K. P., & Kazak, A. E. (2001). Childhood illness-related parenting stress: The Pediatric Inventory for Parents. Journal of Pediatric Psychology, 26, 155-162.
32. Varni, J. W., Burwinkle, T. M., Jacobs, J. R., Gottschalk, M., Kaufman, F., & Jones, K. L. (2003). The PedsQL in type 1 and type 2 diabetes. Diabetes Care, 26, 631-637.
33. Varni, J. W., Burwinkle, T. M., Rapoff, M. A., Kamps, J. L., & Olson, N. (2004). The PedsQL in pediatric asthma: Reliability and validity of the Pediatric Quality of Life Inventory generic core scales and asthma module. Journal of Behavioral Medicine, 27, 297-318.
34. Varni, J. W., Limbers, C. A., & Burwinkle, T. M. (2007). Impaired health-related quality of life in children and adolescents with chronic conditions: A comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 generic core scales. Health and Quality of Life Outcomes, 5, 43.
35. Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQL: Measurement model for the Pediatric Quality of Life Inventory. Medical Care, 37, 126-139.
36. Wechsler, D. (1991). Wechsler Intelligence Scale for Children-Third Edition. San Antonio, TX: Psychological Corporation.
37. Wechsler, D. (1997). Wechsler Adult Intelligence Scale-Third Edition: Administration and scoring manual. San Antonio, TX: Psychological Corporation.
38. Williams, J., Wake, M., Hesketh, K., Maher, E., & Waters, E. (2005). Health-related quality of life of overweight and obese children. Journal of the American Medical Association, 293, 70-76.