No description available.

The population of medically fragile adolescents has grown in recent decades because of the sequelae of prematurity, injuries, and chronic or terminal illnesses. Medically fragile adolescents who require respiratory assistance are part of this unique population with challenges in their daily lives, yet as nurses, we know little about their experiences and the best approaches to use in caring for them. The purpose of this study was to explore the experiences of medically fragile adolescents who require respiratory assistance. Interpretive phenomenology was used to describe and interpret the experience of 11 medically fragile adolescents who required respiratory assistance. The adolescents ranged in age from 13 to 18 years of age and required respiratory assistances of tracheostomies, ventilator support, and Bi-level positive airway pressure (BiPap). Audiotaped semi-structured interviews were conducted with the adolescents. Data analysis was completed using the steps delineated by Diekelmann and Allen (1989). Six themes and one pattern were identified from the interviews with the adolescents. The major themes were “Get to know me”, “Allow me to be myself”, “Being there for me”, “No matter what, technology helps”, “I am an independent person”, and “The only one I know of”. This study explored medically fragile adolescents who required a specific technology, respiratory assistance, within a distinct developmental stage. These adolescents have a clear view of who they are as a person. They want nurses to view them as a person, not just a patient. The adolescents felt that friends were there for them when they needed support. This was in contrast to those that they did not consider friends who were judgmental. Technology had meanings that encompassed enhanced daily living and existing as a part of their day, not their whole day. The adolescents viewed themselves as an independent person and were actively engaging in activities and strategies to achieve their goals of independence. This study contributes to nursing knowledge by helping nurses to understand what these adolescents experience in their daily lives and aiding nurses in providing better care for these adolescents. Recommendations for nursing practice, education, and research were identified in this study.

No description available.

Technological advances during the past 30 years have dramatically improved survival rates for children with life-threatening conditions (preterm births, congenital anomalies, disease, or injury) resulting in children with special health care needs (CSHCN), children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who require health and related services beyond that required by children generally. There are approximately 10.2 million of these children in the United States or one in five households with a child with special health care needs. Care for these children is limited to home care, medical day care (Prescribed Pediatric Extended Care; P-PEC) or a long term care (LTC) facility. There is very limited research examining health outcomes of CSHCN and their families. The purpose of this research was to compare the effects of home care settings, P-PEC settings, and LTC settings on child health and functioning, family health and function, and health care service use of families with CSHCN. Eighty four CSHCN ages 2 to 21 years having a medically fragile or complex medical condition that required continual monitoring were enrolled with their parents/guardians. Interviews were conducted monthly for five months using the PedsQL TM Generic Core Module for child health and functioning, PedsQL TM Family Impact Module for family health and functioning, and Access to Care from the NS-CSHCN survey for health care services. Descriptive statistics, chi square, and ANCOVA were conducted to determine differences across care settings. Children in the P-PEC settings had a highest health care quality of life (HRQL) overall including physical and psychosocial functioning. Parents/guardians with CSHCN in LTC had the highest HRQL including having time and energy for a social life and employment. Parents/guardians with CSHCN in home care settings had the poorest HRQL including physical and psychosocial functioning with cognitive difficulties, difficulties with worry, communication, and daily activities. They had the fewest hours of employment and the most hours providing direct care for their children. Overall health care service use was the same across the care settings.