During the past forty years, the survival rate of individuals with spina bifida (SB) has improved considerably, resulting in nearly 90% living into adulthood. The needs of adolescents with SB highlight the importance of empirically testing transition self management interventions to support them in making successful biopsychosocial transitions to adulthood (McLone, 1989; Morgan, Blackburn & Bax, 1995). The goal of this prospective controlled trial is to examine whether a cognitive-behavioral program of Transition Preparation Training (TPT), in combination with SB management, will lead to improved transition self management and physiologic and psychosocial outcomes. The self management intervention, TPT program is representative of the supportive-educative nursing system that Orem (2001) describes as enabling improvement in self-care agency and the transition outcomes of subjective well-being, role mastery and well being of relationships (Meleis, 1997). The goal of the Transition Preparation Training (TPT) is to foster the development of competencies and a sense of mastery in adolescents with SB to acquire knowledge and develop skills to transition to adulthood. A total of 78 adolescents with SB from the Childrens Hospital Los Angeles Spina Bifida Center will be recruited for treatment (39) and control groups (39).
The specific aims of this project are to compare adolescents with SB who receive TPT in combination with SB management to adolescents with SB who receive only SB management within four major dimensions: 1) Subjective well being, as measured by the Personal Adjustment and Role Skills Scale; 2) Role mastery, as measured by the Community Life Skills Scale; 3) Well- being of relationships, as measured by My Family and Friends Scale: Teenage Version; and 4) Self-care agency, as measured by the Denyes Self-Care Practice Instrument. Demographic information will be obtained using the Transition Demographic Questionnaire. This study will use a prospective two-group quasi-experimental design. The study hypotheses will test for differences between two groups on the degree of change observed in measures of subjective well-being, role mastery, well being of relationships and self-care agency. Differences in the amount of change observed as a function of the TPT will be assessed using one-way (TPT vs. Control) repeated measures (pre- and post training) analyses of variance or multivariate analyses of variance (MANOVAs). This study is important to public health, as it will test whether the training program is helpful to young people with chronic conditions to learn to become independent adults. ? ? ? ?
| Betz, Cecily L; Smith, Kathryn; Macias, Kristy (2010) Testing the transition preparation training program: A randomized controlled trial. Int J Child Adolesc health 3:595-607 |
| Betz, Cecily L (2008) Health care transitions of youth with special health care needs: the never ending journey. Commun Nurs Res 41:13-29 |
