Coping with Wolf-Hirschhorn syndrome: quality of life and psychosocial features of family carers
dc.contributor.author | Berrocoso Cascallana, Sarah | |
dc.contributor.author | Amayra Caro, Imanol | |
dc.contributor.author | Lázaro Pérez, Esther | |
dc.contributor.author | Martínez, Óscar | |
dc.contributor.author | López Paz, Juan Francisco | |
dc.contributor.author | García Martín, Maitane | |
dc.contributor.author | Pérez Álvarez, Manuel | |
dc.contributor.author | Al-Rashaida, Mohammad Ali Hussein | |
dc.contributor.author | Rodríguez Bermejo, Alicia Aurora | |
dc.contributor.author | Luna Ovalle, Paula | |
dc.contributor.author | Pérez Núñez, Paula | |
dc.contributor.author | Blanco, Raquel | |
dc.contributor.author | Nevado, Julián | |
dc.date.accessioned | 2025-10-03T11:07:19Z | |
dc.date.available | 2025-10-03T11:07:19Z | |
dc.date.issued | 2020-10-19 | |
dc.date.updated | 2025-10-03T11:07:18Z | |
dc.description.abstract | Background: Wolf-Hirschhorn Syndrome (WHS) is a rare, congenital disease characterized by a distinctive facial phenotype, seizures, intellectual disability and developmental delay, and pre and postnatal growth requiring lifelong care. The psychosocial status of the family caregivers of children diagnosed with WHS is unknown. This study aims to characterize the sociodemographic and psychosocial profile of WHS caregivers and analyze how these variables impact their quality of life (QoL) and well-being. Results: The sociodemographic and clinical profile of 22 Spanish caregivers of children with WHS and the characteristics of those affected have been described. Significant relationships were found between sociodemographic and psychosocial characteristics among caregivers. The impact on the parents’ QoL and negative relationship with the symptomatology were assessed. The use of engagement strategies such as problem focused coping was associated with improved psychological QoL and social support. Conclusions: WHS caregivers share similarities in their profile and needs with caregivers of children with other rare diseases. Pychosocial support groups involving parents caring for children with the same disease could improve caregivers’ well-being and QoL by strengthening their social support network and using positive coping styles. | en |
dc.description.sponsorship | This research was supported by the Education Department of the Basque Government (BOPV, 18th August 2015), grant number: PRE_2015_1_0169 to Sarah Berrocoso | en |
dc.identifier.citation | Berrocoso, S., Amayra, I., Lázaro, E., Martínez, O., López-Paz, J. F., García, M., Pérez, M., Al-Rashaida, M., Rodríguez, A. A., Luna, P. M., Pérez-Núñez, P., Blanco, R., & Nevado, J. (2020). Coping with Wolf-Hirschhorn syndrome: quality of life and psychosocial features of family carers. Orphanet Journal of Rare Diseases, 15(1). https://doi.org/10.1186/S13023-020-01476-8 | |
dc.identifier.doi | 10.1186/S13023-020-01476-8 | |
dc.identifier.eissn | 1750-1172 | |
dc.identifier.uri | https://hdl.handle.net/20.500.14454/3848 | |
dc.language.iso | eng | |
dc.publisher | BioMed Central Ltd | |
dc.rights | © The Author(s). 2020 | |
dc.subject.other | 4p deletion | |
dc.subject.other | Caregivers | |
dc.subject.other | Coping | |
dc.subject.other | Depression | |
dc.subject.other | Quality of life | |
dc.subject.other | Social support | |
dc.subject.other | Spirituality | |
dc.subject.other | Wolf-Hirschhorn syndrome | |
dc.title | Coping with Wolf-Hirschhorn syndrome: quality of life and psychosocial features of family carers | en |
dc.type | journal article | |
dcterms.accessRights | open access | |
oaire.citation.issue | 1 | |
oaire.citation.title | Orphanet Journal of Rare Diseases | |
oaire.citation.volume | 15 | |
oaire.licenseCondition | https://creativecommons.org/licenses/by/4.0/ | |
oaire.version | VoR |
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