This article outlines and summarizes the rationale and the working process that was undertaken by the National Spina Bifida Program to address the issues of transitioning throughout the life course for persons growing up with spina bifida. Their challenges include achieving independent living, vocational independence, community mobility, and participation in social activities, and health management. The creation, the underlying concepts, and the dissemination of the Life Course Model are described.
Spina bifida (SB) is a multidimensional condition thought to impact different life-domains across the course of development. Children born three to four decades ago who were affected by chronic childhood conditions, such as SB and cerebral palsy, generally did not live to adulthood. Survival rates for conditions such as these have increased dramatically in industrialized countries since that time and are no longer considered to result in premature death by default. Nevertheless, growing up with SB or cerebral palsy poses multiple challenges that children without a chronic and complex disabling condition do not experience. Thus, the manner in which SB-related variables influence the transition of youth into adulthood has increasingly become an area of public health interest.
Preparing for life as an adult for any young person with such conditions involves a broad range of concerns, inevitable stumbling blocks, as well as opportunities for creative adaptation. Current understanding of the condition-related impact of SB upon transition processes includes several promising areas of knowledge, but also includes significant research gaps and domains that have been understudied, leaving in many instances decisions to be made based on personal expert opinions. However, research has shown that, in addition to the perhaps obvious medical complications that can occur with complex childhood conditions compared with adolescents without physical disabilities, 11- to 16-year-old adolescents with physical disabilities reported more difficulty with decision making, more difficulty making and communicating with friends, that they were less likely to have plans to attend college, and more likely to be unable to express what they would be doing at age sixteen. Moreover, challenges were also reported in achieving independent living, vocational independence, and community mobility, and in participation in social activities. Although the value that is placed on having a job, living independently, and having hobbies and friends is subjective and, to some degree, culture-specific, they are generally important cornerstones in people’s lives.
The Centers for Disease Control and Prevention (CDC) has a long and successful history in the discovery of causative factors of SB and in the prevention of births that are affected by SB. However, it was not until 2003 that a more coordinated CDC effort was initiated to include a focus on persons who are born and living with SB. The National Spina Bifida Program (NSBP) was developed as a congressionally mandated program and placed at the National Center for Birth Defects and Developmental Disabilities at CDC. The goals of this program are to: facilitate independence, enhance participation in society, increase access to effective health care, and to increase the number of persons living healthy lives with minimal associated health conditions. To achieve these goals, surveillance, intramural and extramural research, close collaboration with SB advocacy organizations such as the Spina Bifida Association (SBA), as well as other mechanisms and partnerships are used.
Many believe that to realize the desired level of independence and participation by adults with SB, intentional preparation for this achievement needs to begin at an early age. However, although it is mandated that aging out of the school system be preceded by “transition” planning, this planning generally occurs when a child reaches the age of 14 to 15 years. The plan typically encompasses what he or she may be doing upon leaving high school—work, further education, or some type of training. Although the condition-related impact of SB is better understood during early periods of child development, it is considerably less well understood during adolescence and young adulthood and there is little research or guidance on how to manage the transition process. Even in well-designed research studies, there is often little linkage between findings and eventual outcomes that might be useful for guiding interventions to improve the outcomes of the adult transition process in SB. The American Academy of Pediatrics has expended much effort to describe the need for and the difficulties associated with the transfer to a health care system that is family-centered, continuous, comprehensive, coordinated, compassionate, and culturally competent for children with special health care needs as they become too old to be cared for in the pediatric system of care. The term “transition” has been used to refer to this transfer of medical care effort as well. However, the issues of transition are much broader and long-standing than either of these definitions and require the interplay of medical, educational, and social systems that are often working independently and not set up to support the achievement of independence or the early and ongoing developmental work that may be necessary for a successful transition into young adulthood for persons living with chronic childhood conditions. The creation of a resource to guide the preparation for adult participation (ie, life-course transitioning) was consequently identified as a high priority area by the NSBP. The availability of a resource of this kind will help individuals with SB as well as their parents, teachers, doctors, and other professionals anticipate common SB-related developmental challenges as well as obtain information regarding known intervention or accommodation approaches.
The process of the NSBP transition initiative
The concept of delineating the problems and developing a plan to be used to facilitate the life-course transition process for persons with SB, and possibly other chronic childhood conditions, was developed by NSBP professionals. The first step involved organizing a two-day Transition Summit hosted by CDC. Persons living with SB and family members of persons living with SB, as well as professionals from different disciplines with recognized expertise in SB and SB research (including developmental pediatrics, nursing, psychology, occupational therapy, and rehabilitation medicine) were invited to participate in the Summit. Professionals representing SBA and CDC also participated. The group was charged with specific tasks. Initially, the group members were asked to state the needs of persons with SB (and other chronic childhood conditions) that must be met in order that they may transition successfully from a child-oriented system of care and services to one focused on the needs of an independent and participating adult. The discussion was then directed to describe the barriers that prevent developmentally appropriate transitions throughout the life course in medical and nonmedical areas; to describe interventions or programs with demonstrated success in addressing the identified barriers to successful and timely transitions; and to describe the expected outcomes of effective transition programs or resources. Toward the end of the Transition Summit, a conversation was held to identify the next steps needed to put available and appropriate transition-related resources into the hands of persons who may need them. To frame this work, the NSBP’s draft “Life-Course Model” (discussed in detail later) was presented as a way to organize the discussion about resources and interventions. The discussion regarding interventions encompassed several specific domains that included: Health Care, Access and Use; Health Promotion; Sexuality and Reproductive Concerns; Self-Advocacy or Self-Care Management; Education or Job Training; Relationships; Socialization or Social Skills; Depression and Mental Health (including during major disasters); Transportation; Mobility; Family Interventions; and Preventing Secondary Conditions. The Transition Summit discussions resulted in the articulation of a number of key principles to guide the development of interventions, as well as the identification of interventions specific to particular age groups. A summary of these key principles is presented in Box 1.
General
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Transition begins early—identify developmental issues at birth and across the life course.
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Monitor developmental progress systematically in different stages or aspects of life.
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Individualize transition interventions as appropriate and based on developmental assessment.
Adolescents
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Begin planning for transition before child becomes an adolescent.
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Education and guidance for adolescents is essential. Information should be provided often and until the adolescent models behavior that is reflective of the education.
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At times, male or female differences and concerns may need to be addressed in same-gender groups.
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Mentor teens with SB by adults with SB.
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Create opportunities for participation in team sports and group activities.
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Create and use peer groups.
Young Adults
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Empower young adults to be self-advocates
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Link young adults to offices of disability at post-secondary schools
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Promote volunteerism and building and sustaining relationships
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