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Gepubliceerd in: Quality of Life Research 8/2011

01-10-2011

Maternal, paternal, and family health-related quality of life in the context of pediatric inflammatory bowel disease

Auteurs: Jennifer Hauser Kunz, Rachel Neff Greenley, Megan Howard

Gepubliceerd in: Quality of Life Research | Uitgave 8/2011

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Abstract

Purpose

The primary aim of this study was to examine the associations of disease activity and adolescent adjustment with parent and family health-related quality of life (HRQoL) among families of youths with inflammatory bowel disease (IBD). A secondary aim was to compare maternal and paternal perceptions of parent and family functioning.

Methods

Ninety-five primarily Caucasian families (92 mothers and 43 fathers) of youths with IBD ranging in age from 11 to 18 participated. Most adolescents were diagnosed with Crohn’s disease and had been diagnosed with IBD for several years at the time of the study. Parents completed the PedsQL Family Impact Module, while youths completed the Pediatric Symptoms Checklist. Disease activity ratings were obtained from medical records.

Results

Multiple regression analyses suggested that disease activity was consistently associated with all father-reported outcomes and explained twice as much of the variance in father-reported parent and family HRQoL outcomes compared to mother-reported outcomes. In contrast, youth adjustment was consistently associated with all maternal outcomes but only one paternal outcome, and explained nearly twice as much variance in maternal-reported outcomes compared to paternal-reported outcomes. No significant differences between maternal and paternal reports of parent or family HRQoL were identified using independent samples t tests.

Conclusions

Although mothers and fathers report similar individual and family HRQoL, the strength of associations between disease and youth adjustment factors with these outcomes differs somewhat by parent gender. Findings underscore the importance of examining maternal and paternal functioning separately and incorporating routine family assessment into the course of treatment.
Literatuur
1.
go back to reference Kappelman, M. D., Rifas-Shiman, S. L., Kleinman, K., et al. (2007). The prevalence and geographic distribution of Crohn’s disease and ulcerative colitis in the United States. Clinical Gastroenterology and Hepatology, 5, 1424–1429.PubMedCrossRef Kappelman, M. D., Rifas-Shiman, S. L., Kleinman, K., et al. (2007). The prevalence and geographic distribution of Crohn’s disease and ulcerative colitis in the United States. Clinical Gastroenterology and Hepatology, 5, 1424–1429.PubMedCrossRef
2.
go back to reference Hanauer, S. B. (2006). Inflammatory bowel disease: Epidemiology, pathogenesis, and therapeutic opportunities. Inflammatory Bowel Diseases, 12, S3–S9.PubMedCrossRef Hanauer, S. B. (2006). Inflammatory bowel disease: Epidemiology, pathogenesis, and therapeutic opportunities. Inflammatory Bowel Diseases, 12, S3–S9.PubMedCrossRef
3.
go back to reference Banez, G. A., & Cunningham, C. (2003). Recurrent abdominal pain, inflammatory bowel disease, and rumination disorder/cyclic vomiting. In M. Roberts (Ed.), Handbook of Pediatric Psychology (pp. 462–478). New York: Guilford Publications. Banez, G. A., & Cunningham, C. (2003). Recurrent abdominal pain, inflammatory bowel disease, and rumination disorder/cyclic vomiting. In M. Roberts (Ed.), Handbook of Pediatric Psychology (pp. 462–478). New York: Guilford Publications.
4.
go back to reference Anderson, B. J., Auslander, W. F., Jung, K. C., Miller, J. P., & Santiago, J. V. (1990). Assessing family sharing of diabetes responsibilities. Journal of Pediatric Psychology, 15, 477–492.PubMedCrossRef Anderson, B. J., Auslander, W. F., Jung, K. C., Miller, J. P., & Santiago, J. V. (1990). Assessing family sharing of diabetes responsibilities. Journal of Pediatric Psychology, 15, 477–492.PubMedCrossRef
5.
go back to reference Greenley, R. N., Josie, K. L., & Drotar, D. (2006). Perceived involvement in condition management among inner city youth with asthma and their primary caregivers. Journal of Asthma, 43, 687–693.PubMedCrossRef Greenley, R. N., Josie, K. L., & Drotar, D. (2006). Perceived involvement in condition management among inner city youth with asthma and their primary caregivers. Journal of Asthma, 43, 687–693.PubMedCrossRef
6.
go back to reference Varni, J. W., Sherman, S. A., Burwinkle, T. M., Dickinson, P. E., & Dixon, P. (2004). The PedsQL family impact module: Preliminary reliability and validity. Health and Quality of Life Outcomes, 2, 55–61.PubMedCrossRef Varni, J. W., Sherman, S. A., Burwinkle, T. M., Dickinson, P. E., & Dixon, P. (2004). The PedsQL family impact module: Preliminary reliability and validity. Health and Quality of Life Outcomes, 2, 55–61.PubMedCrossRef
7.
go back to reference Cunningham, C., & Banez, G. (2006). Inflammatory bowel disease. In pediatric gastrointestinal disorders: Biopsychosocial assessment and treatment (pp. 31–54). New York, NY: Springer Science Business Media. Cunningham, C., & Banez, G. (2006). Inflammatory bowel disease. In pediatric gastrointestinal disorders: Biopsychosocial assessment and treatment (pp. 31–54). New York, NY: Springer Science Business Media.
8.
go back to reference Akobeng, A. K., Miller, V., Firth, D., Suresh-Babu, M. V., Mir, P., & Thomas, A. G. (1999). Quality of life of parents and siblings of children with inflammatory bowel disease. Journal of Pediatric Gastroenterology and Nutrition, 28, S40–S42.PubMedCrossRef Akobeng, A. K., Miller, V., Firth, D., Suresh-Babu, M. V., Mir, P., & Thomas, A. G. (1999). Quality of life of parents and siblings of children with inflammatory bowel disease. Journal of Pediatric Gastroenterology and Nutrition, 28, S40–S42.PubMedCrossRef
9.
go back to reference Engstrom, I. (1991). Parental distress and social interaction in families with children with inflammatory bowel disease. Journal of the American Academy of Child and Adolescent Psychiatry, 30, 904–912.PubMedCrossRef Engstrom, I. (1991). Parental distress and social interaction in families with children with inflammatory bowel disease. Journal of the American Academy of Child and Adolescent Psychiatry, 30, 904–912.PubMedCrossRef
10.
go back to reference Szajnberg, N., Krall, V., Davis, P., Treem, W., & Hyams, J. (1993). Psychopathology and relationship measures in children with inflammatory bowel disease and their parents. Child Psychiatry and Human Development, 23, 215–232.PubMedCrossRef Szajnberg, N., Krall, V., Davis, P., Treem, W., & Hyams, J. (1993). Psychopathology and relationship measures in children with inflammatory bowel disease and their parents. Child Psychiatry and Human Development, 23, 215–232.PubMedCrossRef
11.
go back to reference Goldbeck, L. (2001). Parental coping with the diagnosis of childhood cancer: Gender effects, dissimilarity within couples, and quality of life. Psycho-Oncology, 10, 325–335.PubMedCrossRef Goldbeck, L. (2001). Parental coping with the diagnosis of childhood cancer: Gender effects, dissimilarity within couples, and quality of life. Psycho-Oncology, 10, 325–335.PubMedCrossRef
12.
go back to reference Kazak, A. E., Rourke, M. T., & Crump, T. A. (2003). Families and other systems in pediatric psychology. In M. Roberts (Ed.), Handbook of pediatric psychology (pp. 159–175). New York: Guilford Publications. Kazak, A. E., Rourke, M. T., & Crump, T. A. (2003). Families and other systems in pediatric psychology. In M. Roberts (Ed.), Handbook of pediatric psychology (pp. 159–175). New York: Guilford Publications.
13.
go back to reference Quittner, A. L., DiGirolamo, A. M., Michel, M., & Eigen, H. (1992). Parental response to CF: A contextual analysis of the diagnosis phase. Journal of Pediatric Psychology, 17, 683–704.PubMedCrossRef Quittner, A. L., DiGirolamo, A. M., Michel, M., & Eigen, H. (1992). Parental response to CF: A contextual analysis of the diagnosis phase. Journal of Pediatric Psychology, 17, 683–704.PubMedCrossRef
14.
go back to reference Phares, V., Lopez, E., Fields, S., Kamboukos, D., & Duhig, A. M. (2005). Are fathers involved in pediatric psychology research and treatment? Journal of Pediatric Psychology, 30, 631–643.PubMedCrossRef Phares, V., Lopez, E., Fields, S., Kamboukos, D., & Duhig, A. M. (2005). Are fathers involved in pediatric psychology research and treatment? Journal of Pediatric Psychology, 30, 631–643.PubMedCrossRef
15.
go back to reference Seagull, E. A. (2000). Beyond mothers and children: Finding the family in pediatric psychology. Journal of Pediatric Psychology, 25, 161–169.PubMedCrossRef Seagull, E. A. (2000). Beyond mothers and children: Finding the family in pediatric psychology. Journal of Pediatric Psychology, 25, 161–169.PubMedCrossRef
16.
go back to reference Wallander, J. L., & Varni, J. W. (1998). Effects of chronic physical disorders on child and family adjustment. Journal of Child Psychology and Psychiatry, 39, 29–46.PubMedCrossRef Wallander, J. L., & Varni, J. W. (1998). Effects of chronic physical disorders on child and family adjustment. Journal of Child Psychology and Psychiatry, 39, 29–46.PubMedCrossRef
17.
go back to reference Greenley, R. N., Hommel, K., Nebel, J., Raboin, T., Li, S., Simpson, P., et al. (2010). A meta-analytic review of the psychosocial adjustment of youth with inflammatory bowel disease. Journal of Pediatric Psychology, 35(8), 857–869.PubMedCrossRef Greenley, R. N., Hommel, K., Nebel, J., Raboin, T., Li, S., Simpson, P., et al. (2010). A meta-analytic review of the psychosocial adjustment of youth with inflammatory bowel disease. Journal of Pediatric Psychology, 35(8), 857–869.PubMedCrossRef
18.
go back to reference Halterman, J. S., Yoos, H. L., Conn, K. M., Callahan, P. M., Montes, G., Neely, T. L., et al. (2004). The impact of childhood asthma on parental quality of life. Journal of Asthma, 41, 645–653.PubMedCrossRef Halterman, J. S., Yoos, H. L., Conn, K. M., Callahan, P. M., Montes, G., Neely, T. L., et al. (2004). The impact of childhood asthma on parental quality of life. Journal of Asthma, 41, 645–653.PubMedCrossRef
19.
go back to reference Faulkner, M. S., & Clark, F. S. (1998). Quality of life for parents of children and adolescents with type 1 diabetes. The Diabetes Educator, 24, 721–727.PubMedCrossRef Faulkner, M. S., & Clark, F. S. (1998). Quality of life for parents of children and adolescents with type 1 diabetes. The Diabetes Educator, 24, 721–727.PubMedCrossRef
20.
go back to reference Greenley, R. N., & Cunningham, C. (2009). Parent quality of life in the context of pediatric inflammatory bowel disease. Journal of Pediatric Psychology, 34, 129–136.PubMedCrossRef Greenley, R. N., & Cunningham, C. (2009). Parent quality of life in the context of pediatric inflammatory bowel disease. Journal of Pediatric Psychology, 34, 129–136.PubMedCrossRef
21.
go back to reference Wood, B., Watkins, J. B., Boyle, J. T., Nogueira, J., Zimand, E., & Carroll, L. (1989). The “psychosomatic family” model: an empirical and theoretical analysis. Family Process, 28, 399–417.PubMedCrossRef Wood, B., Watkins, J. B., Boyle, J. T., Nogueira, J., Zimand, E., & Carroll, L. (1989). The “psychosomatic family” model: an empirical and theoretical analysis. Family Process, 28, 399–417.PubMedCrossRef
22.
go back to reference Banez, G. A., & Compas, B. E. (1990). Children’s and parents’ daily stressful events and psychological symptoms. Journal of Abnormal Child Psychology, 18, 591–605.PubMedCrossRef Banez, G. A., & Compas, B. E. (1990). Children’s and parents’ daily stressful events and psychological symptoms. Journal of Abnormal Child Psychology, 18, 591–605.PubMedCrossRef
23.
go back to reference Thompson, R. J., Jr, 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.PubMedCrossRef Thompson, R. J., Jr, 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.PubMedCrossRef
24.
go back to reference Tojek, T. M., Lumley, M. A., Corlis, M., Ondersma, S., & Tolia, V. (2002). Maternal correlates of health status in adolescents with inflammatory bowel disease. Journal of Psychosomatic Research, 52, 173–179.PubMedCrossRef Tojek, T. M., Lumley, M. A., Corlis, M., Ondersma, S., & Tolia, V. (2002). Maternal correlates of health status in adolescents with inflammatory bowel disease. Journal of Psychosomatic Research, 52, 173–179.PubMedCrossRef
25.
go back to reference Burke, P. M., Neigut, D., Kocoshis, S., Chandra, R., & Sauer, J. (1994). Correlates of depression in new onset pediatric inflammatory bowel disease. Child Psychiatry and Human Development, 24, 275–283.PubMedCrossRef Burke, P. M., Neigut, D., Kocoshis, S., Chandra, R., & Sauer, J. (1994). Correlates of depression in new onset pediatric inflammatory bowel disease. Child Psychiatry and Human Development, 24, 275–283.PubMedCrossRef
26.
go back to reference Kugathasan, S., Judd, R. H., Hoffmann, R. G., Heikenen, J., Telega, G., Khan, F., et al. (2003). Epidemiologic and clinical characteristics of children with newly diagnosed inflammatory bowel disease in Wisconsin: A statewide population-based study. Journal of Pediatrics, 143, 525–531.PubMedCrossRef Kugathasan, S., Judd, R. H., Hoffmann, R. G., Heikenen, J., Telega, G., Khan, F., et al. (2003). Epidemiologic and clinical characteristics of children with newly diagnosed inflammatory bowel disease in Wisconsin: A statewide population-based study. Journal of Pediatrics, 143, 525–531.PubMedCrossRef
27.
go back to reference Hyams, J. S., Ferry, G. D., Mandel, F. S., Gryboski, J. D., Kibort, P. M., Kirschner, B. S., et al. (1991). Development and validation of a pediatric Crohn’s disease activity index. Journal of Pediatric Gastroenterology and Nutrition, 12, 439–447.PubMed Hyams, J. S., Ferry, G. D., Mandel, F. S., Gryboski, J. D., Kibort, P. M., Kirschner, B. S., et al. (1991). Development and validation of a pediatric Crohn’s disease activity index. Journal of Pediatric Gastroenterology and Nutrition, 12, 439–447.PubMed
28.
go back to reference Jellinek, M. S., Murphy, J. M., & Burns, B. J. (1986). Brief psychosocial screening in outpatient pediatric practice. Journal of Pediatrics, 109, 371–378.PubMedCrossRef Jellinek, M. S., Murphy, J. M., & Burns, B. J. (1986). Brief psychosocial screening in outpatient pediatric practice. Journal of Pediatrics, 109, 371–378.PubMedCrossRef
29.
go back to reference Stoppelbein, L., Greening, L., Jordan, S. S., Elkin, T. D., Moll, G., & Pullen, J. (2005). Factor analysis of the pediatric symptom checklist with a chronically ill pediatric population. Journal of Developmental and Behavioral Pediatrics, 26, 349–355.PubMedCrossRef Stoppelbein, L., Greening, L., Jordan, S. S., Elkin, T. D., Moll, G., & Pullen, J. (2005). Factor analysis of the pediatric symptom checklist with a chronically ill pediatric population. Journal of Developmental and Behavioral Pediatrics, 26, 349–355.PubMedCrossRef
Metagegevens
Titel
Maternal, paternal, and family health-related quality of life in the context of pediatric inflammatory bowel disease
Auteurs
Jennifer Hauser Kunz
Rachel Neff Greenley
Megan Howard
Publicatiedatum
01-10-2011
Uitgeverij
Springer Netherlands
Gepubliceerd in
Quality of Life Research / Uitgave 8/2011
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-011-9853-3

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