Skip to main content
Top
Published in: Journal of Clinical Psychology in Medical Settings 4/2014

01-12-2014

Caregiving Burden and Parent–Child Quality of Life Outcomes in Neurodevelopmental Conditions: The Mediating Role of Behavioral Disengagement

Authors: Carlos Carona, Neuza Silva, Carla Crespo, Maria Cristina Canavarro

Published in: Journal of Clinical Psychology in Medical Settings | Issue 4/2014

Login to get access

Abstract

The aim of this study was to analyze the direct and indirect effects, via parents’ behavioral disengagement coping, of caregiving burden on the quality of life (QL) of parents and their children with neurodevelopmental conditions. Self-completion questionnaires on the target variables were administered to a sample of 156 parents who had a child with a neurodevelopmental condition, namely epilepsy (n = 65) and cerebral palsy (n = 91). Structural equation modeling was used to test a mediation model and ascertain direct and indirect effects among study variables. Significant direct effects of caregiving burden on parents’ and their children’s QL were found. Additionally, caregiving burden had a significant indirect effect on parents’ QL, via behavioral disengagement, but not on their children’s QL. Finally, this model was found to be invariant across conditions and patients’ age groups. Caregiving burden may be elected as a strategic intervention target to improve parent–child QL outcomes in neuropediatric settings. Parents should be encouraged to avoid or reduce behavioral disengagement coping in relation to their caregiving stress, and alternatively adopt active coping strategies that may positively affect their children’s QL and impede or attenuate the deleterious effects of caregiving burden on their own QL.
Literature
go back to reference Abramson, L. Y., Seligman, M. E. P., & Teasdale, J. (1978). Learned helplessness in humans: critique and reformulation. Journal of Abnormal Psychology, 87, 49–74.PubMedCrossRef Abramson, L. Y., Seligman, M. E. P., & Teasdale, J. (1978). Learned helplessness in humans: critique and reformulation. Journal of Abnormal Psychology, 87, 49–74.PubMedCrossRef
go back to reference Baker, G. A., Gagnon, D., & McNulty, P. (1998). The relationship between seizure frequency, seizure type and quality of life: findings from three European countries. Epilepsy Research, 30, 231–240.PubMedCrossRef Baker, G. A., Gagnon, D., & McNulty, P. (1998). The relationship between seizure frequency, seizure type and quality of life: findings from three European countries. Epilepsy Research, 30, 231–240.PubMedCrossRef
go back to reference Bollen, K. A. (2002). Latent variables in psychology and the social sciences. Annual Review of Psychology, 53, 605–634.PubMedCrossRef Bollen, K. A. (2002). Latent variables in psychology and the social sciences. Annual Review of Psychology, 53, 605–634.PubMedCrossRef
go back to reference Brehaut, J. C., Kohen, D. E., Raina, P., Walter, S. D., Russell, D. J., Swinton, M., et al. (2004). The health of primary caregivers of children with cerebral palsy: How does it compare with that of other Canadian caregivers? Pediatrics, 114, e182–e191.PubMedCrossRef Brehaut, J. C., Kohen, D. E., Raina, P., Walter, S. D., Russell, D. J., Swinton, M., et al. (2004). The health of primary caregivers of children with cerebral palsy: How does it compare with that of other Canadian caregivers? Pediatrics, 114, e182–e191.PubMedCrossRef
go back to reference Browne, M., & Cudeck, R. (1993). Alternative ways of assessing model fit. In K. Bollen & J. Long (Eds.), Testing structural equation models (pp. 136–162). Newbury Park, CA: Sage. Browne, M., & Cudeck, R. (1993). Alternative ways of assessing model fit. In K. Bollen & J. Long (Eds.), Testing structural equation models (pp. 136–162). Newbury Park, CA: Sage.
go back to reference Burker, E. J., Evon, D., Loiselle, M. M., Finkel, J., & Mill, M. (2005). Planning helps, behavioral disengagement does not: coping and depression in the spouses of heart transplant candidates. Clinical Transplantation, 19, 653–658.PubMedCrossRef Burker, E. J., Evon, D., Loiselle, M. M., Finkel, J., & Mill, M. (2005). Planning helps, behavioral disengagement does not: coping and depression in the spouses of heart transplant candidates. Clinical Transplantation, 19, 653–658.PubMedCrossRef
go back to reference Byrne, B. M. (2010). Structural equation modeling with AMOS: Basic concepts, applications, and programming - (2nd ed.). New York: Routledge. Byrne, B. M. (2010). Structural equation modeling with AMOS: Basic concepts, applications, and programming - (2nd ed.). New York: Routledge.
go back to reference Carona, C., Crespo, C., & Canavarro, M. C. (2013). Similarities amid the difference: Caregiving burden and adaptation outcomes in dyads of parents and their children with and without cerebral palsy. Research in Developmental Disabilities, 34, 882–893.PubMedCrossRef Carona, C., Crespo, C., & Canavarro, M. C. (2013). Similarities amid the difference: Caregiving burden and adaptation outcomes in dyads of parents and their children with and without cerebral palsy. Research in Developmental Disabilities, 34, 882–893.PubMedCrossRef
go back to reference Carver, C. S. (1997). You want to measure coping but your protocol’s too long: Consider the Brief COPE. International Journal of Behavioral Medicine, 4, 92–100.PubMedCrossRef Carver, C. S. (1997). You want to measure coping but your protocol’s too long: Consider the Brief COPE. International Journal of Behavioral Medicine, 4, 92–100.PubMedCrossRef
go back to reference Carver, C. S., Scheier, M. F., & Weintraub, J. K. (1989). Assessing coping strategies: a theoretically based approach. Journal of Personality and Social Psychology, 56, 267–283.PubMedCrossRef Carver, C. S., Scheier, M. F., & Weintraub, J. K. (1989). Assessing coping strategies: a theoretically based approach. Journal of Personality and Social Psychology, 56, 267–283.PubMedCrossRef
go back to reference Chou, K. R. (2000). Caregiver burden: A concept analysis. Journal of Pediatric Nursing, 15, 398–407.PubMedCrossRef Chou, K. R. (2000). Caregiver burden: A concept analysis. Journal of Pediatric Nursing, 15, 398–407.PubMedCrossRef
go back to reference Committee on Children with Disabilities, Committee on Psychosocial Aspects of Child and Family Health (CCD & CPACFH). (1993). Psychosocial risks of chronic health conditions in childhood and adolescence. Pediatrics, 92, 876–878. Committee on Children with Disabilities, Committee on Psychosocial Aspects of Child and Family Health (CCD & CPACFH). (1993). Psychosocial risks of chronic health conditions in childhood and adolescence. Pediatrics, 92, 876–878.
go back to reference Crespo, C., Carona, C., Silva, N., Canavarro, M. C., & Dattilio, F. (2011). Understanding quality of life in children with asthma and their parents: family resources and challenges. Contemporary Family Therapy, 33, 179–196.CrossRef Crespo, C., Carona, C., Silva, N., Canavarro, M. C., & Dattilio, F. (2011). Understanding quality of life in children with asthma and their parents: family resources and challenges. Contemporary Family Therapy, 33, 179–196.CrossRef
go back to reference Duffy, L. V. (2011). Parental coping and childhood epilepsy: the need for future research. Journal of Neuroscience Nursing, 43, 29–35.PubMedCrossRef Duffy, L. V. (2011). Parental coping and childhood epilepsy: the need for future research. Journal of Neuroscience Nursing, 43, 29–35.PubMedCrossRef
go back to reference Garner, R. E., Arim, R. G., Kohen, D. E., Lach, L. M., MacKenzie, M. J., Brehaut, J. C., et al. (2011). Parenting children with neurodevelopmental disorders and/or behaviour problems. Child: Care. Health and Development, 39, 412–421.CrossRef Garner, R. E., Arim, R. G., Kohen, D. E., Lach, L. M., MacKenzie, M. J., Brehaut, J. C., et al. (2011). Parenting children with neurodevelopmental disorders and/or behaviour problems. Child: Care. Health and Development, 39, 412–421.CrossRef
go back to reference Gaspar, T., & Matos, M. G. (2008). Kidscreen handbook: Quality of life assessment in children and adolescents. Lisboa: Faculdade de Motricidade Humana/FCT. Gaspar, T., & Matos, M. G. (2008). Kidscreen handbook: Quality of life assessment in children and adolescents. Lisboa: Faculdade de Motricidade Humana/FCT.
go back to reference Guðmundsdóttir, H. S., Guðmundsdóttir, D. B., & Elklit, A. (2006). Risk and resistance factors for psychological distress in Icelandic parents of chronically ill children: An application of Wallander and Varni’s disability-stress-coping model. Journal of Clinical Psychology in Medical Settings, 13, 295–302.CrossRef Guðmundsdóttir, H. S., Guðmundsdóttir, D. B., & Elklit, A. (2006). Risk and resistance factors for psychological distress in Icelandic parents of chronically ill children: An application of Wallander and Varni’s disability-stress-coping model. Journal of Clinical Psychology in Medical Settings, 13, 295–302.CrossRef
go back to reference Hair, J. F., Black, W. C., Babin, B. J., & Anderson, R. E. (2010). Multivariate data analyses (7th ed.). New Jersey: Prentice Hall. Hair, J. F., Black, W. C., Babin, B. J., & Anderson, R. E. (2010). Multivariate data analyses (7th ed.). New Jersey: Prentice Hall.
go back to reference Hu, L., & Bentler, P. M. (1999). Cutoff criteria for fit indexes in covariance structure analysis: Conventional criteria versus new alternatives. Structural Equation Modeling, 6, 1–55.CrossRef Hu, L., & Bentler, P. M. (1999). Cutoff criteria for fit indexes in covariance structure analysis: Conventional criteria versus new alternatives. Structural Equation Modeling, 6, 1–55.CrossRef
go back to reference Judge, S. L. (1998). Parental coping strategies and strengths in families of young children with disabilities. Family Relations, 47, 263–268.CrossRef Judge, S. L. (1998). Parental coping strategies and strengths in families of young children with disabilities. Family Relations, 47, 263–268.CrossRef
go back to reference Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer. Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer.
go back to reference Lin, S. L. (2000). Coping and adaptation in families of children with cerebral palsy. Exceptional Children, 66, 201–218. Lin, S. L. (2000). Coping and adaptation in families of children with cerebral palsy. Exceptional Children, 66, 201–218.
go back to reference Little, T. D., Cunningham, W. A., Shahar, G., & Widaman, K. F. (2002). To parcel or not to parcel: Exploring the question and weighing the merits. Structural Equation Modeling, 9, 151–173.CrossRef Little, T. D., Cunningham, W. A., Shahar, G., & Widaman, K. F. (2002). To parcel or not to parcel: Exploring the question and weighing the merits. Structural Equation Modeling, 9, 151–173.CrossRef
go back to reference Montgomery, R., & Kosloski, K. (2006). The league of experienced family caregivers: Measure development. Milwaukee, WI: University of Wisconsin-Milwaukee. Montgomery, R., & Kosloski, K. (2006). The league of experienced family caregivers: Measure development. Milwaukee, WI: University of Wisconsin-Milwaukee.
go back to reference Nassau, J. H., & Drotar, D. (1997). Social competence among children with central nervous system-related chronic health conditions: A review. Journal of Pediatric Psychology, 22, 771–793.PubMedCrossRef Nassau, J. H., & Drotar, D. (1997). Social competence among children with central nervous system-related chronic health conditions: A review. Journal of Pediatric Psychology, 22, 771–793.PubMedCrossRef
go back to reference Pais-Ribeiro, J. L., & Rodrigues, A. P. (2004). Questões acerca do coping: A propósito do estudo de adaptação do Brief Cope [Some questions about coping: The study of the Portuguese adaptation of the Brief COPE]. Psicologia, Saúde & Doenças, 5(1), 3–15. Pais-Ribeiro, J. L., & Rodrigues, A. P. (2004). Questões acerca do coping: A propósito do estudo de adaptação do Brief Cope [Some questions about coping: The study of the Portuguese adaptation of the Brief COPE]. Psicologia, Saúde & Doenças, 5(1), 3–15.
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
go back to reference Preacher, K. J., & Hayes, A. F. (2008). Asymptotic and resampling strategies for assessing and comparing indirect effects in multiple mediator models. Behavior Research Methods, 40, 879–891.PubMedCrossRef Preacher, K. J., & Hayes, A. F. (2008). Asymptotic and resampling strategies for assessing and comparing indirect effects in multiple mediator models. Behavior Research Methods, 40, 879–891.PubMedCrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference Ravens-Sieberer, U., Erhart, M., Rajmil, L., Herdman, M., Auquier, P., Bruil, J., et al. (2010). Reliability, construct and criterion validity of the KIDSCREEN-10 score: a short measure for children and adolescents’ well-being and health-related quality of life. Quality of Life Research, 19, 1487–1500.PubMedCentralPubMedCrossRef Ravens-Sieberer, U., Erhart, M., Rajmil, L., Herdman, M., Auquier, P., Bruil, J., et al. (2010). Reliability, construct and criterion validity of the KIDSCREEN-10 score: a short measure for children and adolescents’ well-being and health-related quality of life. Quality of Life Research, 19, 1487–1500.PubMedCentralPubMedCrossRef
go back to reference Silva, N., Crespo, C., & Canavarro, M. C. (2013). Transactional paths between children and parents in pediatric asthma: Associations between family relationships and adaptation. Journal of Child and Family Studies, 23, 360–372. Silva, N., Crespo, C., & Canavarro, M. C. (2013). Transactional paths between children and parents in pediatric asthma: Associations between family relationships and adaptation. Journal of Child and Family Studies, 23, 360–372.
go back to reference Speechley, K. N., Sang, X., Levin, S., Zou, G. Y., Eliasziw, M., Smith, M. L., et al. (2008). Assessing severity of epilepsy in children: Preliminary evidence of validity and reliability of a single-item scale. Epilepsy & Behavior, 13, 337–342.CrossRef Speechley, K. N., Sang, X., Levin, S., Zou, G. Y., Eliasziw, M., Smith, M. L., et al. (2008). Assessing severity of epilepsy in children: Preliminary evidence of validity and reliability of a single-item scale. Epilepsy & Behavior, 13, 337–342.CrossRef
go back to reference Surveillance of Cerebral Palsy in Europe (SCPE). (2000). Surveillance of cerebral palsy in Europe (SCPE): A collaboration of cerebral palsy surveys and registers. Developmental Medicine and Child Neurology, 42, 816–824.CrossRef Surveillance of Cerebral Palsy in Europe (SCPE). (2000). Surveillance of cerebral palsy in Europe (SCPE): A collaboration of cerebral palsy surveys and registers. Developmental Medicine and Child Neurology, 42, 816–824.CrossRef
go back to reference Taft, C. T., Resick, P. A., Panuzio, J., Vogt, D. S., & Mechannic, M. B. (2007). Examining the correlates of engagement and disengagement coping among help-seeking battered women. Violence and Victims, 22, 3–17.PubMedCentralPubMedCrossRef Taft, C. T., Resick, P. A., Panuzio, J., Vogt, D. S., & Mechannic, M. B. (2007). Examining the correlates of engagement and disengagement coping among help-seeking battered women. Violence and Victims, 22, 3–17.PubMedCentralPubMedCrossRef
go back to reference Vaz-Serra, A., Canavarro, M. C., Simo˜es, M. R., Pereira, M., Quartilho, M., Rijo, D., et al. (2006). Estudos psicométricos do instrumento de avaliação da qualidade de vida da Organização Mundial de Saúde (WHOQOL-Bref) para português de Portugal [Psychometric studies of World Health Organization Quality of Life instrument—WHOQOL-Bref—in Portugal]. Psiquiatria Clínica, 27(2), 41–49. Vaz-Serra, A., Canavarro, M. C., Simo˜es, M. R., Pereira, M., Quartilho, M., Rijo, D., et al. (2006). Estudos psicométricos do instrumento de avaliação da qualidade de vida da Organização Mundial de Saúde (WHOQOL-Bref) para português de Portugal [Psychometric studies of World Health Organization Quality of Life instrument—WHOQOL-Bref—in Portugal]. Psiquiatria Clínica, 27(2), 41–49.
go back to reference Veale, D. (2008). Behavioural activation for depression. Advances in Psychiatric Treatment, 14, 29–36.CrossRef Veale, D. (2008). Behavioural activation for depression. Advances in Psychiatric Treatment, 14, 29–36.CrossRef
go back to reference 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.PubMedCrossRef 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.PubMedCrossRef
go back to reference WHOQOL Group. (1998). Development of World Health Organization WHOQOL-BREF quality of life assessment. Psychological Medicine, 28, 551–558.CrossRef WHOQOL Group. (1998). Development of World Health Organization WHOQOL-BREF quality of life assessment. Psychological Medicine, 28, 551–558.CrossRef
Metadata
Title
Caregiving Burden and Parent–Child Quality of Life Outcomes in Neurodevelopmental Conditions: The Mediating Role of Behavioral Disengagement
Authors
Carlos Carona
Neuza Silva
Carla Crespo
Maria Cristina Canavarro
Publication date
01-12-2014
Publisher
Springer US
Published in
Journal of Clinical Psychology in Medical Settings / Issue 4/2014
Print ISSN: 1068-9583
Electronic ISSN: 1573-3572
DOI
https://doi.org/10.1007/s10880-014-9412-5

Other articles of this Issue 4/2014

Journal of Clinical Psychology in Medical Settings 4/2014 Go to the issue