Practitioner surveys have revealed that many providers do not feel adequately trained to address some of the most prevalent health issues for teens living with disabilities including substance use, sexuality, emotional difficulties, and abuse. Adolescence is a critical time for assuming responsibility for many phases of one’s life. For adolescents with neurodevelopmental and related disabilities as well as adolescents with chronic health conditions, control over their health and wellness may be even more crucial than for other adolescents. To address these needs, the RRTC: Health and Wellness Consortium created a curriculum and training program for students in the University Affiliated Programs (UAPs) Maternal and Child Health Bureau (MCH) sponsored Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programs. LEND programs provide long-term, graduate level interdisciplinary training to health professionals. This brief describes the RRTC’s development and implementation of a training curriculum targeting health care providers in training regarding health and wellness for adolescents living with disabilities. The goal of the training curriculum was to sensitize professionals to core areas of health promotion for teens with disabilities and to increase the professionals’ competence in understanding the issues and addressing the needs of teens. Impact data on participants’ knowledge, skill, and self-efficacy in addressing health and wellness for teens living with disabilities will be discussed as well as implications for future applications of the training curriculum. Targeting the health promotion practices of graduate level health professionals is an important step in decreasing barriers to health and wellness for teens living with disabilities.
The purpose of the UAP/MCH Interdisciplinary Postgraduate Training Project was to develop and implement an innovative, interdisciplinary training program for UAPs, a major trainer of professionals of multiple disciplines serving people with disabilities. This project would target various disciplines, including but not limited to: psychology, special education and rehabilitation counseling, medicine, social work, occupational and physical therapy, augmentative communication. By targeting this audience, the training would develop leadership potential to improve the health status of infants, children, and adolescents with or at risk for neurodevelopmental and related disabilities. There are two primary goals of this training:
To increase the understanding and sensitivity of health care professionals to issues of holistic wellness for teens with a disability and their families and
To increase the comfort level of health care professionals in approaching and talking with teens about a variety of topics that may be considered of a sensitive nature.
Setting: This project focused on working within an existing infrastructure for training, and that has been very successful so far. Most LEND programs have on-going training opportunities through weekly professional seminars. Incorporating our training into these seminars proved successful, as these students were “captive”, motivated, and open to learn. Without an existing training infrastructure, it would be very difficult to provide training to the targeted professionals.
Curriculum: The training curriculum, Health & Wellness for Teens Living with Disabilities: Understanding and Becoming Sensitive to the Issues, was initially developed by two LEND students at Oregon Health & Science University (OHSU). The curriculum is modular and open for adaptation at other programs; short enough to fit into a full training curriculum; based on teen input; and supported by professionals involved in training from different disciplines. The curriculum presents teen’s perspectives as well as research findings and offers providers the opportunity to practice talking about health and wellness through role-plays and case studies. The curriculum is divided into modules that cover health and wellness, relationships and sexuality, mental health and substance abuse, and nutrition and physical activity. It includes video segments in which teens living with disabilities discuss health and wellness topics as well as their relationships with their health care providers. Since its creation, it has gone through several revisions in order to refine its content. More background information has been added to the modules including the results from the most recent research in the field. Pertinent journal articles or publications are included in each module to enhance the academic depth of the training, and there is an increased focus on making the training discussion focused rather than lecture oriented by including more discussion questions, group exercises, and case scenarios.
Participants: The curriculum was pilot tested in Fall 2000 with 12 interdisciplinary LEND students at Oregon Health & Sciences University (OHSU), with evaluation data informing the revision. The curriculum was pilot-tested a second time following revisions in Fall 2001 with 10 interdisciplinary LEND students at OHSU. The UAPs from Pacific West LEND Consortium (Hawaii, Southern California, and Washington) agreed to field-test the curriculum during the 2001-2002 academic year. Hawaii and University of Washington completed the training with approximately 20 students total and provided feedback for revisions. The curriculum was updated during the Fall of 2002 and implemented at OHSU in January of 2003 with 11 LEND students.
Measures: Initial data collected during the pilot and field-testing of the curriculum was primarily qualitative and used to improve the structure and content of the curriculum. In the most recent implementation at OHSU, a quantitative pre-post evaluation of the training was used to measure participant’s knowledge, skills, and perceived self-efficacy related to discussing health and wellness issues with adolescents living with disabilities. Fifteen true-false questions measured the participant’s knowledge of health and wellness issues for teens living with disabilities. Using a Likard scale, participants ranked their own skills by indicating how prepared they felt to talk to teens living with disabilities about particular issues (1=Not Prepared At All, 2=Somewhat Unprepared, 3=Somewhat Prepared, and 4=Very Prepared). Finally, perceived self-efficacy was measured on a scale of 1 to 10 by having participants rank (1 being low, 10 being high) the importance of talking with a teen living with a disability about health and wellness and their own confidence in doing so.
Qualitative results from the pilot and field-tests were used to identify strengths and weaknesses in the curriculum. The feedback from these sessions indicated that participants felt the health behaviors and issues identified in the curriculum (sexuality, abuse, drug and alcohol use, depression, etc.) were important for teens with disabilities. Suggestions included increasing the academic depth of the information presented, including the perceptions of people living with disabilities of health and wellness, addressing the issue of homosexuality, creating more realistic role-plays, and allowing ample time for discussion among the participants. Many of these suggestions were implemented in the revised version of Health & Wellness for Teens Living with Disabilities: Understanding and Becoming Sensitive to the Issues. A quantitative evaluation tool was also developed for the revised curriculum in order to measure changes in knowledge, skill, and perceived self-efficacy among the participants.
Eleven participants completed the pre-post evaluation at OHSU in January of 2003. Paired t tests indicate that participant knowledge increased significantly from a mean score of 64.2% to 78.1% (P < .05) on the 15 true-false questions on health and wellness for teens living with disabilities .
Preliminary data suggest that participants increased their knowledge, skill, and confidence in addressing health and wellness issues in the adolescents they serve. In the coming year we will collect more extensive data on participants’ needs and the impact of the program, in advance of marketing the curriculum to the full LEND network of programs.
Future research needs to measure and analyze the outcomes of provider trainings on the health and wellness behaviors of adolescents living with disabilities.
Future policies need to integrate health and wellness promotion for adolescents with disabilities into graduate health provider training programs.
It is important that future training opportunities advance the preparation of health care providers to promote health and wellness among adolescents living with disabilities.