ArticlesA natural history study of adolescents and young adults with sickle cell disease as they transfer to adult care: A need for case management services*,**
Section snippets
Literature review
Adolescence is a developmental stage that begins with the onset of puberty. For females puberty usually begins between 10 and 12 years of age and for males between 12 and 14 years of age. Adolescence is psychologically characterized by the movement from a relative state of dependency to a defining growth of autonomy and is physically characterized by rapid bodily changes. Developmental tasks include establishing a sense of identity and autonomy, achieving a vocational/career goal, increasing
Methodology
To answer the research questions, a nonexperimental descriptive research design was used to collect historical and data. Historical data were obtained through record review and face-to-face contact or telephone interviews with primary providers. Descriptive and demographic data on AYAs past and present experiences were obtained through face-to-face interviews with study participants. The following five tools were used for data collection.
Demographic and Informational Inventory, a 17-item form
Results
Data include transfer information and results by research question. Data were analyzed using descriptive and frequency techniques. If there were significant correlations between critical dependent variables, (e.g., uninterrupted care, compliance, independence, self-efficacy), and independent variables, (e.g., preparation, gender, PCC) researchers computed nonparametric statistical tests. Inferences cannot be made because of the small number of participants and the presence of only one ACC site.
Discussion
The aforementioned results corroborate Hauser and Dorn's (1999) earlier work that AYAs receive little if any preparation before leaving PCC. More importantly, our current results support the following: (1) AYAs with chronic illness are transferred to ACC abruptly with little preparation or opportunity to practice managing their care; (2) follow-up care often ceases once the patient leaves PCC; (3) transfer is often initiated because of the AYAs age or pregnancy rather than readiness to
Limitations
As noted in the introduction, the goals of this study were not to offer predictions, but rather to investigate current transfer practices and to identify potential hazards in these practices. There are four major limitations with this study. First, the small sample size precludes determining if any relationships exist among variables or making generalizations to other like populations. Second, a large number of potential cases were lost to follow-up because these patients left pediatrics
Future research
Future research is needed to evaluate those persons with SCD who do not follow-through with obtaining health care beyond pediatric care. This research is crucial to pursue relevant health care policy and its economic ramifications. More specifically, further research is needed to evaluate the efficacy of the transitioning protocol suggested in this study and to develop methods to increase providers' awareness of transition needs. Ideally, results from such studies will influence health policy
Implications for nursing practice
The results of this study show that none of the sites had a transition program and despite the good intentions of the health care providers, most participants received little preparation before transfer. Findings suggest that the participants were not adequately prepared to move to adult care and that many of them ceased to follow-through with care. With this in mind, findings point to a need for reconfiguration of the pediatric and adult care nurses' role in working with AYAs with chronic
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Cited by (0)
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Supported by the Health Research and Policy Centers at the University of Illinois at Chicago, Chicago, IL.
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Address reprint requests to Elizabeth A. Wojciechowski, PhD, RN CS, Clinical Education Program Manager, Rehabilitation Institute of Chicago, 345 East Superior, Rm 162, Chicago, IL 60611. E-mail: [email protected].