Structure of the life course model Web site

The specialized transition-related information included in the Life Course Model Web site is organized around the Life Course Model described by Mark E. Swanson in this issue. This model includes four general age ranges; preschool, school-age, adolescence, and young adulthood. Each of these age ranges was noted to contain important transitions in multiple functional life domains. For instance, important academic transitions are experienced by most individuals with SB in each of the noted age ranges, including the beginning of formal schooling, the transition of the individual into the increased academic expectations of third and fourth grade, the transition of the individual into middle school/high school, and the process involved in making plans following high school. Other transition processes can be traced along this time dimension, such as the series of transitions that occur within the parent/child relationship (eg, the development of parent/child attachment in childhood, a gradual shift of responsibilities from parent to child in adolescence, and the eventual development of parent/child interdependence in young adulthood).

In addition to the age clusters described, the logic model that provides the underlying structure to the Life Course Model Web site also includes several broad functional domains that represent another dimension of the model. The first of these broad functional dimensions, self-management/health, includes discrete functional domains related to mobility, skin integrity, sexuality, obesity prevention, bowel/bladder management, and condition self-management. The second broad functional domain area is personal and social relationships; this area includes content specific to discrete functional domains, including the personal development of the individual with SB, as well as his or her relationship with parents, siblings, friends, and romantic/intimate partners. The third and final broad functional domain of the Life Course Model Web site is employment and income support; this area includes a focus upon discrete areas such as cognitive development, mastery of different academic content, functional academics, prevocational skill development, and the development of responsibility-taking behaviors. Discrete functional domains are identified within each of these broad functional areas, and these discrete areas are further subdivided by age to examine smaller transitional steps occurring within each discrete functional domain during the preschool, school-age, adolescent, and young adult time periods.

The Life Course Model Web site allows exploration of the noted SB-related transition information according to both age dimension and the functional dimension, thereby demonstrating the distinct and parallel developmental processes thought to underlie the gradual transition of youth with SB into the roles and responsibilities of adulthood. Specifically, the Web site format allows an exploration of a distinct functional domain (eg, relationship with siblings) sequentially by age (ie, longitudinally), allowing one to see the conceptual manner in which this distinct functional domain develops across the lifespan (eg, managing early sibling conflicts during the school-aged years may facilitate the development of mutual sibling support during young adulthood). The flexibility of the Web-based format also allows for exploration of the functional domain by individual age ranges (ie, cross-sectional), allowing one to see the manner in which distinct functional domain elements might overlap, develop in tandem, or mutually facilitate growth at different periods of time (eg, maximizing mobility during preschool may help prevent obesity during preschool).

The Life Course Model Web site is intended to allow navigation of the transition content in a number of different ways based upon the user’s individual concerns, learning styles, or interests. To organize content areas, specific indicators of milestone achievement are included by age and functional domain. These indicators of developmental progress allow the user to quickly assess the developmental gains of his or her child with SB within the context of the transition model. For instance, a parent of a preschooler can quickly access indicators of success transitional achievement during the preschool years, and use this information to gauge a child’s progress or needs. In turn, the same parent of a preschooler with SB can review indicators of discrete functional development during childhood and adolescence, perhaps in anticipation of upcoming transitional challenges and developmental steps. To facilitate access to these indicators of milestone achievement, the indicators of milestone achievement are worded in question format, which facilitates the possibility of an online developmental survey that can help direct parents, teachers, clinicians, and others to indicators and content that may be of particular interest based upon their survey responses.

In addition to the milestones and indicators described previously, the Life Course Model Web site presents various practical tips, intervention strategies, and assessment techniques that are associated with the indicators/milestones in the transition process. There are currently few (if any) evidenced-based practices that have been developed for addressing the academic, personal/social, or health care and self-management needs of youth with SB. As such, most tips and intervention strategies are generated out of either promising practices or reports of effectiveness based upon parent or clinician anecdotal report. The Web-based platform allows all of these tips and intervention strategies to be available for review at any point at which a parent, clinician, or person with SB encounters a discrete functional content area for which he or she wants intervention advice. In this respect, the tips and interventions are nested within the broader transition related content, and the interested user can access this information via a simple mouse click. Furthermore, link-out options permit direct electronic routing of the user to additional Internet-based resources such as scientific abstracts, source documents, additional explanations of concepts, or additional resources in areas of interest or concern.

In short, the Web site model allows the user to navigate horizontally among the indicators of milestone achievement in different functional domain areas and during various periods of development, but also allows the user to drill down into the Web site for helpful tips and strategies for addressing indicator-related areas of concern. The following examples are presented to illustrate this drill down process. These examples were selected to illustrate the age range included in the Life Course Model Web site (preschool, school age, adolescence, young adulthood), provide examples of the functional domains, and demonstrate the organization of the content included.