RESUMO
The objective of the research is twofold: (1) To understand the emotional process of coping with being at risk or being symptomatic of Huntington's disease (HD), and its effect on the relationship between grandparents and grandchildren. (2) To explore the impact on grandparents of the risk or diagnosis of HD in their grandchildren. A qualitative case-study methodology was used. The interview was used as data collection instrument and the genogram as a graphic representation. The consent of the informants was requested, the permission of the Korean Huntington Association of Castilla y León is obtained and the favorable Report of the Bioethics Commission of the University of Burgos. Avoidance of open conversation about the presence of HD is observed. The impact of HD on the grandparent-grandchild subsystem in family dynamics is confirmed. Greater knowledge of HD-specific coping strategies is needed in this subsystem.
Assuntos
Avós , Doença de Huntington , Adaptação Psicológica , Família , Relações Familiares , Humanos , Doença de Huntington/epidemiologiaRESUMO
This article describes the structural and emotional disturbances in families with one or more members affected by Huntington's disease, according to the different symptoms, the affected member (offspring, parent) and the different stages of the disease. We consider that support services to the family should be made up of professionals who are specialists in the specific needs of the disease and who should help to plan and design individual, suitable and flexible support. This support should focus on overcoming the impact of the disease, providing relevant information, seeking practical solutions, giving emotional support, designing specific care in each case and each stage, and reducing fear of the future.
Assuntos
Família , Doença de Huntington , Família/psicologia , Humanos , Doença de Huntington/psicologia , Doença de Huntington/terapiaRESUMO
Pediatric illnesses are always a family problem. Hospitalization, treatments and their long term consequences constitute a challenge for the family. In this paper, we describe the structural, procedural and emotional alterations that affect the family dynamic. We argue that the child should be treated within the family context and propose a multi-dimensional intervention model centered on the family's singularities and specific needs, the support available in their environment, the development of capacities and resilience, and also the organization of user-centered services that are coordinated with all the services provided by the community.
Assuntos
Doença Crônica , Saúde da Família , Pediatria , Doença Crônica/terapia , HumanosRESUMO
La enfermedad pediátrica es siempre un problemafamiliar. La hospitalización, los tratamientos y las secuelasconstituyen un desafío para la familia. En estetrabajo describimos las alteraciones estructurales, procesualesy emocionales que se producen en la dinámicafamiliar. Consideramos que la intervención del niñoenfermo debe hacerse siempre en el contexto familiary proponemos un modelo de intervención multidimensionalcentrado en la singularidad de las familias y ensus necesidades, en los apoyos disponibles en su entornonatural, en el desarrollo de las competencias y de laresiliencia y en la organización de servicios centradosen el usuario y coordinados con todos los servicios queofrece la comunidad(AU)
Pediatric illnesses are always a family problem.Hospitalization, treatments and their long term consequencesconstitute a challenge for the family. Inthis paper, we describe the structural, procedural andemotional alterations that affect the family dynamic.We argue that the child should be treated within thefamily context and propose a multi-dimensional interventionmodel centered on the familys singularitiesand specific needs, the support available in their environment,the development of capacities and resilience,and also the organization of user-centered servicesthat are coordinated with all the services provided bythe community(AU)
