Lifestyle and quality of life in the ICT society

QUALITY OF LIFE IN CAREGIVERS OF CHILDREN WITH CEREBRAL PALSY

2008-2011 - Ministry of Science and Innovation. PSI2008-01124/PSIC.

The main objective of the project is to use ICT to intervene in the quality of life of parents taking care of children with chronic disorders.

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SUMMARY

In the framework of a theoretical model like the Conceptual Model of Caregiving Process and Caregiver Burden Among Pediatric Population, developed by Parminder Raina and colleagues (Raina et al., 2004, 2005), we intend to design, implement and evaluate an online intervention to reduce the perception of burden of parents with children with cerebral palsy and improve their quality of life.

The basis for our intervention is a web designed in open code that allows “peer to peer” work between parents of children in our study, offering a new intervention perspective based on the promotion of exchange between equals.

The most important results of the project, based on the analysis of the data obtained, allow us to state that:

  1. The most useful sections of the platform are the forums; among which the most highly rated is the general caregivers’ forum, and next the professional forums: psychologist, physical therapist and social worker.
  2. The self-efficacy of the caregiver seems to be a relevant variable in the health and well-being of the caregivers of children with cerebral paralysis, as parents with higher self-efficacy have better physical and mental health, more satisfactory social relationships, fewer depressive symptoms, and greater satisfaction with their relationship with the environment. In addition, it is a main explanatory variable of the overload presented by caregivers. Therefore, it is critical to provide caregivers with strategies to facilitate expectations of self-efficacy and, thus, reduce the overload.
  3. The results coincide with the bibliography on the topic, in that the perceived self-efficacy and social support variables are shown to be related to general parental well-being. All of this leads us to emphasize the need to take this set of variables into account when designing and implementing intervention programmes: it will be fundamental to provide parents resources to face the demands of the family situation and give them adequate coping strategies and spaces for exchange and relationships among equals.

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TEAM

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MATERIALS

Featured publications:

Pousada, M., Guillamón, N., Hernández-Encuentra, E., Muñoz, E., Redolar, D., Boixadós, M. & Gómez-Zúñiga, B. (2013). Impact of Caring for a Child with Cerebral Palsy on the Quality of Life of Parents: A Systematic Review of the Literature. Journal of Developmental and Physical Disabilities, 25(5).

Muñoz-Marrón, E., Redolar, D., Boixadós, M., Nieto, R., Guillamón, N., Hernández, E. & Gómez, B. (2013). Burden on caregivers of children with cerebral palsy. Predictors and related factors. Universitas Psychologica, 12 (3).

Guillamón, N., Nieto, R., Pousada, M., Redolar, D., Muñoz, E., Hernández, E., Boixadós, M. & Gómez-Zúñiga, B. (2013). Quality of life and mental health among parents of children with cerebral palsy: the influence of self-efficacy and coping strategies. Journal of Clinical Nursing, 22, 1579-1590. DOI: 10.1111/jocn.12124

Pousada, M., Boixadós, M., Nieto, R., Muñoz, E., Hernàndez, E., Gómez, B., Guillamon, N., Redolar, D. & Armayones, M. (2009). Proyecto de una intervención a través de la Red para la mejora de la calidad de vida de padres cuidadores de niños con trastornos crónicos. RevistaeSalud.com. Núm. 20, p. 1-12. ISSN.1698-7969.

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COLLABORATIONS

ASPACE Confederation, non-profit association that groups the main entities providing attention to Spanish Cerebral Palsy patients. In this link you can consult the press release about the signing of the agreement between ASPACE and the UOC.

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