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

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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.

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Acknowledgments

Funding for this study was provided by the Portuguese Calouste Gulbenkian Foundation (Ref. 96783-AS), Institute of Cognitive Psychology, Vocational and Social Development of the University of Coimbra (PEst-OE/PSI/UI0192/2011) and Coimbra Cerebral Palsy Association. Neuza Silva and Carla Crespo were also supported by the Portuguese Foundation for Science and Technology [SFRH/BD/69885/2010 and SFRH/BPD/70063/2010].

Human and Animal Rights and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation of the participating institutions (Portuguese Federation of Cerebral Palsy Associations; Leiria Santo Andre Hospital; Coimbra Pediatric Hospital; Coimbra University Hospitals) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all subjects for being included in the study.

Conflict of Interest

Carlos Carona, Neuza Silva, Carla Crespo, and Maria Cristina Canavarro declare that they have no conflict of interest.

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Authors and Affiliations

  1. Faculty of Psychology and Education Sciences, The University of Coimbra, Rua do Colégio Novo - Apartado 6153, 3001-802, Coimbra, Portugal

    Carlos Carona, Neuza Silva, Carla Crespo & Maria Cristina Canavarro

  2. Cognitive-Behavioral Center for Research and Intervention, The University of Coimbra, Coimbra, Portugal

    Carlos Carona

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  1. Carlos Carona
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  2. Neuza Silva
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  3. Carla Crespo
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  4. Maria Cristina Canavarro
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Correspondence to Carlos Carona.

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Carona, C., Silva, N., Crespo, C. et al. Caregiving Burden and Parent–Child Quality of Life Outcomes in Neurodevelopmental Conditions: The Mediating Role of Behavioral Disengagement. J Clin Psychol Med Settings 21, 320–328 (2014). https://doi.org/10.1007/s10880-014-9412-5

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