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Impact of Caring for a Child with Cerebral Palsy on the Quality of Life of Parents: A Systematic Review of the Literature

Abstract

The implications of caring for a child with cerebral palsy (CP) are considerable, and parents have to cope with many changing demands related to the specific needs of their child. A new research field, devoted to the consequences of these caring tasks, has recently emerged. However, an overall vision is lacking, one that would enable us to understand how research is evolving and the relevant data that should be taken into account when planning interventions with these families. In this paper, we review the literature on the effects of caregiving on parents of children with CP, and summarize the factors related to these effects. A systematic search of online databases was performed and further studies were identified based on the reference lists of selected articles. Forty six articles that met the inclusion criteria were analysed. The review shows that caregivers of children with CP tend to have high levels of stress and depression and lower quality of life than parents of healthy children. We identify child behaviour and cognitive problems, low caregiver self-efficacy and low social support as factors that are consistently related with higher levels of stress and depression. The implications of these findings are discussed, especially those related to interventions that should be addressed to the family as a whole and which should aim to enhance parents’ competence and resources to better cope with the demands of the caring task.

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Acknowledgments

This work has been funded by the Spanish Ministry of Science and Technology (PSI2008-01124; Plan Nacional of I + D). Funds were used to pay the translation of the draft.

The authors of this article are members of PSiNET Research Group, which is recognized and supported by the Catalan Government (SGR09-197).

We thank Gerardo Ontiveros for his assistance with the search through the databases.

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Pousada, M., Guillamón, N., Hernández-Encuentra, E. et al. Impact of Caring for a Child with Cerebral Palsy on the Quality of Life of Parents: A Systematic Review of the Literature. J Dev Phys Disabil 25, 545–577 (2013). https://doi.org/10.1007/s10882-013-9332-6

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Keywords

  • Cerebral palsy
  • Parents
  • Quality of life
  • Wellbeing
  • Stress