Monday, April 12, 2021

Diseases Costs and Impact of the Caring Role on Informal Carers of Children with Neuromuscular Disease

Rodríguez, A.A.; Martínez, Ó.; Amayra, I.; López-Paz, J.F.; Al-Rashaida, M.; Lázaro, E.; Caballero, P.; Pérez, M.; Berrocoso, S.; García, M.; Luna, P.M.; Pérez-Núñez, P.; Passi, N.. International Journal of Environmental Research and Public Health. 2021 Mar;18(6). DOI: 10.3390/ijerph18062991. 

This study shows that carers of children with NMDs have to face a number of high costs related to their own physical and psychological health. Women represented the majority percentage of participants, and most of them had severely dependent children. Therefore, it was perceived that both the group of children with severe support needs, as well as their carers, had greater needs. In turn, it is important to note that there is some public funding for those affected to ensure that they can have access to health services. However, funding from regional governments and non-profit organizations is virtually non-existent for expenses associated with professional support for carers. Moreover, if these carers start from a low socioeconomic situation, dedicating themselves to caregiving increases their vulnerability. Therefore, these situations give rise to social inequality in this group. Finally, our study also found that carers who are female, single or separated and unemployed showed worse physical and psychological health.