ABSTRACT
In palliative care it is necessary to evaluate and respond to the psychological and spiritual needs of the participants in order to achieve the maximum possible well-being for both the patient and his/her family. Coping with one's own death, the loss of a loved one or the loss of some significant aspect in a person's life is one of the most difficult challenges that human beings have to face. Death, as the maximum expression of loss, is experienced as a threat, as one of the most difficult events to cope with and with the greatest psychological impact. In the final stage of life, the patient has to deal with an important emotional impact, many losses and the need to cope with the fears that the whole situation triggers. This path cannot be chosen, but it is possible to choose the attitude taken towards the way the path is walked, so that the patient's perception of control increases, while the sense of uncertainty and the unforeseeable nature of the situation are reduced. This article reports on the psychological and spiritual needs of the family of a child suffering from a severe disease and receiving palliative care, as well as addressing aspects related to the way they cope with such circumstances.
TITLE: Necesidades psicologicas y espirituales del niño con encefalopatia grave y su familia.En cuidados paliativos, es necesario evaluar y responder a las necesidades psicologicas y espirituales de los participantes para conseguir el maximo bienestar posible tanto del paciente como de su familia. Afrontar la propia muerte, la perdida de un ser querido o la perdida de algun aspecto significativo en la vida de una persona supone uno de los retos mas dificiles que afronta el ser humano. La muerte como expresion maxima de perdida es vivida como una amenaza, como uno de los acontecimientos mas dificiles de afrontar y con mayor impacto psicologico. En la etapa final de la vida, el paciente se enfrenta a un importante impacto emocional, a muchas perdidas y a afrontar los miedos que todo esto provoca. No se elige este camino, pero si puede elegir la actitud en el modo de andar ese camino de forma que aumente su percepcion de control y disminuya la incertidumbre y la sensacion de imprevisibilidad. Se presentan las necesidades psicologicas y espirituales, asi como aspectos relacionados con el afrontamiento de la familia de un niño que padece una enfermedad grave y recibe cuidados paliativos.
Subject(s)
Brain Diseases/psychology , Family/psychology , Spirituality , Adaptation, Psychological , Brain Diseases/therapy , Child , Humans , Needs Assessment , Palliative Care , Severity of Illness IndexABSTRACT
End-of-life care is of growing interest in Paediatrics. The number of children with diseases being treated using high-technology as palliative treatment has also increased. The creation of multidisciplinary care teams with 24/7 hours home care may prevent prolonged hospital stays in these patients. To adapt the treatment in order to avoid new hospital admissions and to obtain a better quality of life is a desirable objective. The taking of decisions and subsequent withdrawal of mechanical ventilation in the home is presented, along with the underlying disease and the acute event that led to the worsening of the patient. The decision-making and clinical management until the death of the patient is then discussed and reviewed.
