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Role of Parents of Children With Rare Diseases

Parents and caregiver’s roles coexist in providing better quality of life for children with rare diseases due to the inherent complexity of diseases and the sensitive emotional context of the situations they create need trust to overcome fear in order to live their experience without overwhelming anxiety.

To emphasize this fact, an open-access study published in the International Journal of Environmental Research and Public Health by researchers from the UOC’s PSINET group, Beni Gmez-Ziga, Modesta Pousada, from the Faculty of Psychology and Education Sciences of the Universitat Oberta de Catalunya (UOC), and Manuel Armayones, from the UOC’s eHealth Centre, and Rafael Pulido, from the Department of Education of the University of Almera, interviewed parents of children with rare diseases.


The authors of the study explain that the role of these parents to raise their children needs more emotional strength like trust not blind faith to live without high levels of stress, fatigue, insecurity or uncertainty as a result of more burden on them.

‘Fear overpowers the parents of children with rare diseases but love empowers them.’


“One mother told us: ‘It’s hopeless’, but another, who had managed to increase her trust for various reasons, told us: ‘Things are going to be all right’. That is the difference, and that is what will mark the experience of these mothers and fathers”, said Manuel Armayones, another of the researchers on the study.

If they perceive the experience with less suffering from the beginning of diagnosis of rare disease in their children, they can easily adapt to the role of parents and caregivers.

So the healthiest role identity built by parents and caregivers is a result of the long process of relative and self-perception on overcoming fear through love and trust.

Source: Medindia

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