RESUMEN
When a child has a life-limiting illness, parents' goals and strategies for their child's life may need to be drastically altered, especially if early death looms. This article reviews literature and research about how families employ faith, hope, spirituality, and biblical perspectives as their child becomes critically ill and faces death. Suggestions are made for best caring practices for families and children encountering this difficult journey.
Asunto(s)
Niños con Discapacidad/psicología , Esperanza , Personal de Enfermería/educación , Padres/psicología , Apoyo Social , Espiritualidad , Enfermo Terminal/psicología , Adaptación Psicológica , Adolescente , Adulto , Actitud Frente a la Muerte , Niño , Preescolar , Educación Continua en Enfermería , Femenino , Humanos , Lactante , Recién Nacido , Masculino , Persona de Mediana Edad , Relaciones Padres-Hijo , Relaciones Profesional-Familia , Encuestas y CuestionariosRESUMEN
PURPOSE: The purpose of this study was to identify barriers and facilitators to children's use of speech-generating devices (SGD). DESIGN AND METHODS: Interviews with 14 mothers were analyzed with content analysis to identify barriers and facilitators to SGD use. RESULTS: This study identified a number of specific barriers and facilitators to successful and sustained SGD use by children with complex communication disorders. PRACTICE IMPLICATIONS: Nurses can use the list of barriers and facilitators provided here as a springboard to discuss the families' experiences with device use.
Asunto(s)
Equipos de Comunicación para Personas con Discapacidad/estadística & datos numéricos , Barreras de Comunicación , Relaciones Madre-Hijo , Trastornos del Habla/rehabilitación , Adolescente , Adulto , Actitud Frente a la Salud , Niño , Preescolar , Femenino , Hospitales Pediátricos , Humanos , Masculino , Medio Oeste de Estados Unidos , Investigación Cualitativa , Trastornos del Habla/complicaciones , Adulto JovenRESUMEN
Nasogastric (NG) tube misplacement continues to be one of the most common problems associated with enteral tube feedings. Current methods of testing appropriate NG tube placement are ineffective in detecting tube misplacement in a clinically significant number of infants and children. This case study describes an NG tube misplacement into the esophagus in an infant following laser supraglottoplasty; the misplacement was detected on a radiograph obtained as part of a study protocol. Other testing methods used failed to detect the tube misplacement, which could have led to aspiration pneumonia or other complications if the radiograph had not shown the misplacement.
Asunto(s)
Intubación Gastrointestinal/efectos adversos , Intubación Gastrointestinal/enfermería , Evaluación en Enfermería/métodos , Auscultación/enfermería , Broncoscopía/enfermería , Falla de Equipo , Femenino , Determinación de la Acidez Gástrica , Humanos , Concentración de Iones de Hidrógeno , Lactante , Intubación Gastrointestinal/métodos , Laringoscopía/enfermería , Cuidados Posoperatorios/enfermería , Succión/enfermeríaRESUMEN
Many children with neurodevelopmental disabilities require a nasogastric feeding tube for nutrition at some point in their lives. Because of impaired cognition, anatomical factors, excessive drooling, hyperactive gag reflexes, or some medications, nasogastric tube intubation may be extremely difficult. The case study described here is intended to provide the reader with some suggestions for making feeding tube placement easier for the patient, family, and nursing staff.
Asunto(s)
Parálisis Cerebral/enfermería , Discapacidades del Desarrollo/enfermería , Discapacidad Intelectual/enfermería , Intubación Gastrointestinal/enfermería , Adolescente , Actitud Frente a la Salud , Parálisis Cerebral/psicología , Discapacidades del Desarrollo/psicología , Humanos , Discapacidad Intelectual/psicología , Intubación Gastrointestinal/métodos , Intubación Gastrointestinal/psicología , Masculino , Relaciones Enfermero-Paciente , Evaluación en Enfermería , Educación del Paciente como Asunto , Postura , Psicología del AdolescenteRESUMEN
Sexuality is a human right that is important to all individuals regardless of age, gender, orientation, or developmental level. Sexuality is closely related to a person's self-concept and self-esteem. Individuals with I/DD have a right to sexuality and sexual expression. Nevertheless, persons with I/DD have historically been denied this right, and many structural and attitudinal barriers exist to their healthy sexuality. Paradigms in sexuality education have shifted toward recognizing sexuality as a human right, a major life resource, and an integral part of one's makeup. To broadly address the development of healthy sexuality for individuals with I/DD, the issue needs to be normalized, not ignored or avoided; which means involving parents, staff, and professionals. Working with parents to overcome parental overprotection and social isolation is critical. Parents can provide opportunities for their sons and daughters to network and form meaningful personal relationships, with peers including encouraging association with peers outside of school or work hours.