The impact of chronic disease on the family

Abstract

resUMen Se describen las alteraciones estructurales y emocionales de las familias con uno o más miembros enfermos de Huntington, en función de los diferentes síntomas, del afectado (descendientes, progenitores) y de las diferentes etapas. Consideramos que los servi-cios de ayuda a la familia deben estar compuestos por profesionales expertos en las necesidades específicas de esta enfermedad y que deben ayudar a planificar y diseñar las ayudas de manera individual, adecuada y flexible. Esta ayuda debe centrarse en superar el im-pacto de la enfermedad, en proporcionar información relevante, en buscar soluciones prácticas, en dar apoyo emocional, en diseñar los cuidados necesarios en cada caso y etapa, y en disminuir el miedo al futuro. Palabras clave. Sistema familiar. Reacciones psicológi-cas. Terapia Familiar. Enfermedad de Huntington. Tras-tornos cognitivos. Trastornos del movimiento. ABsTrACT 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.

Life experience of the adult and ageing patient with haemophilia. Practical aspects for psychological support

“…The fact that haemophilia has an impact on PWHs and those around them, both in their functioning and daily activities, is widely acknowledged . People who grow up with haemophilia, sometimes accompanied by an infectious disease, often experience social stigma and fear of rejection .In some societies, the man is traditionally expected to financially support his family, and the disease might make it difficult for him to fulfil this role.…”

“…Haemophilia is a condition usually diagnosed during childhood, and psychosocial aspects of the early years have attracted much attention in the literature. Many authors , including our group , have addressed the psychological impact of the disease, and the necessary support for the family and young patient as he experiences growing up with haemophilia from infancy, through childhood and adolescence . However, the issues of adults or ageing persons with haemophilia (PWHs) have been less frequently discussed.…”

Impact of hemophilia on quality of life of affected children and their parents, a hospital based cross sectional study

“…According to Goldstein G et al have reported that recurrent joint bleeds, change of physical appearance are associated with isolation, depression, anger, and aggressiveness among children with hemophilia. 13 Mothers are reported to bare the maximum burnt due to nature of transmission, resulting in accusations of boys and the family members and associated guilt and isolation within the family. Canclini M et al have reported a lower self-esteem, which tends to increase with age in hemophilic children, as compared to healthy subjects.…”

Hemophilia Care in the Pediatric Age

“…When a child is initially diagnosed, shock, denial, anger and depression are common emotional responses of the parents [79] that play a significant role in the care of a child with hemophilia and refers to experiencing a large responsibility for management of hemophilia at home [80]. Parents have to face not only feelings of anxiety, guilt and worry over their child’s condition, but also the impact of pain during infusion [81].…”