Gestión del cuidado de un paciente con adrenoleucodistrofia / Managing the care of a patient with adrenoleukodystrophy

Se muestra la gestión de un caso realizada por parte de un enfermero comunitario de enlace, cuyo trabajo se en marca dentro de gestión de casos como una práctica avanzada de cuidados, con un paciente diagnosticado deadrenoleucodistrofia y su cuidadora, tras la derivación realizada por su enfermero de familia.Se realizó la valoración integral del paciente y su cuidadora, siguiendo los patrones funcionales de M. Gordon y se utilizaron las taxonomías de lenguaje enfermero NANDA, NOC, NIC para reflejar las decisiones del plan de cuidados y los resultados obtenidos.El paciente presentó como problema de colaboración ataxia muscular, como diagnósticos enfermeros: “deterioro de la integridad cutánea” y “baja autoestima situacional”. La cuidadora tenía un diagnóstico de Enfermería de“afrontamiento familiar comprometido”.La atención del caso requirió la participación de un equipo multidisciplinar para completar la prestación de cuidados y el apoyo al paciente y su cuidadora (AU)

This report describes how a community liaison nurse managed a case,whose work is carried out within the framework of case management as a practical course on advanced care on a patient diagnosed of adrenoleukodystrophy and his carer, after referral by the family nurse.An integral evaluation of the patient and the carer were carried out, followingM. Gordon’s functional patterns. The nursing language taxonomies NANDA,NOC, NIC were used to support the decisions of the care plan and the results achieved.The patient presented a collaboration problem manifested as muscularataxia; nursing diagnoses included deterioration of skin integrity and low situational self-esteem. The carer was assessed as having compromised coping skills with the family.The attention to this case required the participation of a multidisciplinary team to complete the provision of care and the support needed by the patient and his carer (AU)

Hospice care for a terminally-ill child in the school setting.

In our society, the words "dying" and "school" are not a natural fit. Recently they have occurred together all too frequently. When this happens, horror, fear, and confusion often prevail. The death of a child is always a tragedy, but handled well, it can bring positive growth and maturity to the school community. The death of a class member, teacher, or student affects the class in a way that no other event does. Accidental deaths, shootings, and other violent deaths cause multiple and complex problems within the school community. These dramatic and tragic events are present in the media and leave people with a violent concept of death. However, death sometimes comes in slow and lingering ways. In this article, the case study of a student named "Tyler" illustrates the painful but positive experiences of his class. This type of death--of a school-age child--brings a prolonged grief and struggle for students, teachers, and the school community.

Adrenoleukodystrophy: a nursing challenge.

Adrenoleukodystrophy has only recently been recognized as a disorder unique to children. Its debilitating sequelae have a profound impact on the physical, psychosocial, and cognitive development of children. Superimposed on coping with the crisis of illness is the stressor of hospitalization, a common experience for children with adrenoleukodystrophy. This article focuses on nursing's contribution to facilitating children's adaptation to the stressors of a progressive disorder, adrenoleukodystrophy, and hospitalization. Utilizing a developmental approach, the psychosocial needs of these children are addressed in a format based on the nursing process.

Adrenoleukodystrophy: a fatal disorder with new opportunities for prevention and treatment.

Adrenoleukodystrophy is an X-linked disorder characterized by adrenal insufficiency and progressive demyelination of the cerebral white matter. Young boys usually become symptomatic during pre- or primary school years and follow a time-variable, downhill, terminal course. Diagnostic and carrier testing and prenatal diagnosis are available. Several treatments have been used but presently treatment is symptomatic. Nursing in adrenoleukodystrophy involves management of issues including but not limited to diagnosis, genetics, counseling, physical care, emotional care, family care and research.