An overview of the importance of “listening to consumers” is the primary theme of this article. This article features perspectives of consumers as to their transition experiences with descriptions of its positive and challenging aspects as a means of illustrating this period of time in “real-life” terms. Summary reflections of the themes of consumers presented highlight the recommendations for professionals who provide services to youth and young adults.
In the professional literature, much is written about the causative factors associated with spina bifida, its prevention, and the interdisciplinary approaches to addressing the biopsychosocial needs for treatment. From the consumer perspective, for those who have spina bifida, the operative word about the knowledge and science of spina bifida is “about.” That is, the literature to inform constituent groups, whether they are interdisciplinary professionals, policymakers, advocates, parents, or individuals with spina bifida themselves, often “lacks the voice” of those who live with spina bifida every moment of their lives.
The advances in medical treatment and interdisciplinary management of spina bifida have led to impressive improvements in the life expectancy of individuals with spina bifida. Issues of survival recede as quality of life issues and concerns about adulthood potential draw greater attention. As has been discussed throughout this issue, comprehensive preparation for adulthood, beginning in early childhood, is of vital importance to foster the attainment of the lifetime goals that individuals with spina bifida dream and seek to achieve.
Best and evidence-based practices are predicated on data gathered through empiric means, expert practice, and the wisdom and insights of others who have had the lived experience, whether the consumers themselves or their family members. This article provides the perspectives and insights of several individuals with spina bifida who have experienced the transition experience themselves. Their unvarnished stories will open the door, metaphorically speaking, to their own candid reflections of this important period of time in their lives. These personal commentaries, each one unique, reveal the commonalities of this shared life experience. Next, preliminary findings of a longitudinal study entitled, “Examining the Trajectory of Transition in Adolescents and Young Adults with Spina Bifida,” conducted at the Gillette Lifetime Specialty Healthcare Clinic, is presented. The compilation of personal impressions serves to inform those involved in the provision of care, services, policymaking, and advocacy services to youth and young adults with spina bifida, their families, and their circle of support of what is of foremost importance during this period of transition. The article concludes with recommendations, many of which can be located in the new transition Web-based resource, for the provision of youth- and adult-centered services and resources.
Amy’s story
Amy’s reflections about living and growing up as a child with spina bifida and later as an adolescent and young adult, reveal a number of significant influences and challenges she faced. As Amy tells her story, she recounts the very important role her parents had in her life—a role of support and guidance, which at times she described as “overprotective.” Her description of her school experiences in high school and college reveal the challenges that she encountered without the assistance of comprehensive transition planning, including for health care planning. Today, experts and advocates alike recognize the importance of supporting families and children with complex medical conditions, including spina bifida, to access services and/or programs that will assist children to develop self-advocacy and self-determination skills as exemplified with the development of the life span Web-based resource tool. Amy’s brief autobiography reveals the power of her positive and accepting attitude toward living her life to its fullest. The following is Amy’s story.
There are many factors that affect how we handle life transitions, but to me the most significant one is the family. Mine has always been supportive. My parents made sure I got the care I needed. But I was also overly protected. Their concentration, understandably, was on doing all they could to help me survive and walk rather than encouraging independence. Yet I’ve struggled with confidence issues throughout my life, which I believe stem in part from that protectiveness. It is vital, in my opinion, for children with spina bifida to be encouraged to explore their world and be independent.
I was excited to enter the new world of school that my older siblings got to experience every day. I was mainstreamed, which I think was a good idea, but I became aware that I was different from the other kids, some of whom stared and made fun of my wobble walk. School took me out of my comfort zone. My self-consciousness grew. I believe now that counseling could have helped but, to my knowledge, it wasn’t suggested by my medical team.
For health reasons, I was frequently absent from class and found it increasingly difficult to keep up with my work. The teachers and staff, although generally caring, didn’t seem to know how to handle my situation. Early on, I went to physical education classes but spent most of the time on the sidelines. No arrangements were made for activities specific to my capabilities, and eventually I was exempt from physical education classes altogether. And I was held back in second grade because of frequent absenteeism more than an inability to do the work. After a rough start, the school provided more tutoring to help me keep up. I preferred this one-on-one learning experience over being in a classroom full of other kids.
With the help of family, friends, understanding teachers, and counseling, I blossomed in high school. My health improved, as did my confidence. I joined clubs, attended school dances, and did volunteer work. But I was still exempt from physical education classes. The school nurse tried to arrange something for me, but by then, unfortunately, I wasn’t interested. I had too often gotten out of doing what I didn’t want to, and I remained stubborn.
That stubbornness led me to go away to college. But it backfired. I was living 6 hours from home, confronted with responsibilities I was ill-prepared to face on my own—most notably health maintenance. I quit after 2 weeks and entered the local community college the next year, where I thrived. There, I was required to take an activity class, so I chose Personal Fitness. The teacher was understanding toward my limitations and adjusted workouts accordingly. It was one of my favorite classes. I also worked as a tutor in my spare time.
Throughout my adult life, I’ve fought depression, confidence issues, and preconceived notions of others. I let others think for me quite often. But through growth and maturity, that attitude has slowly changed. I’ve explored different career paths. When one didn’t work out, I tried something else. Through my experience with spina bifida, I’ve learned the importance of patience, health maintenance, and having empathy for others.
Transitions are a part of life. With a good base of support and a positive attitude, those with spina bifida can more smoothly navigate life transitions.
Carley’s story
As Carley relates in her report of the transition from adolescence to emerging adulthood, she acknowledges the helpful support she received from educators and other professionals to prepare for the transition to college and the world of work. Yet, this same level of assistance was not available from the team of health care professionals who managed her care for many years. Carley described her health care transition planning and transfer to adult health care as a “non-story,” meaning that she did not receive the assistance she obviously needed.
Carley’s disappointment with the lack of acknowledgment of the important milestone of the termination of her pediatric care is apparent as she describes “there was no fanfare,” a ceremonial oversight by her pediatric providers. Curiously, this “rite of passage,” an important one for both the recipient and provider of care is rarely, if ever, acknowledged. As one expert recommended, “Celebrate transitions as they occur with graduation ceremonies, certificates of completion, and other rites of passage.” (p1313) The lack of assistance with the transfer of her care from pediatric to adult providers is obvious as well. Instead, without the helpful guidance from a member of her longstanding specialized pediatric team, Carley forged ahead to locate her own adult physician. Carley’s story follows.
In reflecting on my transition from pediatric to adult health care, I have trouble putting the experience into words. I realize that this is because, while I can clearly recall much preparation going into other transitions in my life, from high school to college and from college into the work force, I see my health care transition as a non-story, with few details to recall. In my educational and career transitions, I remember a lot of preparation, with teams of professionals coming together with me and possibly my parents, and discussing in detail what the next steps would be to help me reach my goals. For my health care transition, there was no fanfare, no official meetings where the next steps would be neatly spelled out to carry me on my way to my goal of optimal health care. I remember mention of final appointments with my pediatric doctors; however, there was no clear answer as to where I would go next for care. I was left to search through multiple provider lists from my mother’s insurance carrier, hoping to find doctors who had at least a basic knowledge of spina bifida. Luckily, I have found doctors that I am confident will help me reach my health care goals; however, I know not everyone has the access to or knowledge of the health care system to navigate it as successfully as I have, which is why comprehensive health care transition planning is crucial for every adolescent with a chronic illness.
Carley’s story
As Carley relates in her report of the transition from adolescence to emerging adulthood, she acknowledges the helpful support she received from educators and other professionals to prepare for the transition to college and the world of work. Yet, this same level of assistance was not available from the team of health care professionals who managed her care for many years. Carley described her health care transition planning and transfer to adult health care as a “non-story,” meaning that she did not receive the assistance she obviously needed.
Carley’s disappointment with the lack of acknowledgment of the important milestone of the termination of her pediatric care is apparent as she describes “there was no fanfare,” a ceremonial oversight by her pediatric providers. Curiously, this “rite of passage,” an important one for both the recipient and provider of care is rarely, if ever, acknowledged. As one expert recommended, “Celebrate transitions as they occur with graduation ceremonies, certificates of completion, and other rites of passage.” (p1313) The lack of assistance with the transfer of her care from pediatric to adult providers is obvious as well. Instead, without the helpful guidance from a member of her longstanding specialized pediatric team, Carley forged ahead to locate her own adult physician. Carley’s story follows.
In reflecting on my transition from pediatric to adult health care, I have trouble putting the experience into words. I realize that this is because, while I can clearly recall much preparation going into other transitions in my life, from high school to college and from college into the work force, I see my health care transition as a non-story, with few details to recall. In my educational and career transitions, I remember a lot of preparation, with teams of professionals coming together with me and possibly my parents, and discussing in detail what the next steps would be to help me reach my goals. For my health care transition, there was no fanfare, no official meetings where the next steps would be neatly spelled out to carry me on my way to my goal of optimal health care. I remember mention of final appointments with my pediatric doctors; however, there was no clear answer as to where I would go next for care. I was left to search through multiple provider lists from my mother’s insurance carrier, hoping to find doctors who had at least a basic knowledge of spina bifida. Luckily, I have found doctors that I am confident will help me reach my health care goals; however, I know not everyone has the access to or knowledge of the health care system to navigate it as successfully as I have, which is why comprehensive health care transition planning is crucial for every adolescent with a chronic illness.
JAMIE’s story
As with Amy, Jamie’s parents had an important role in her life. She credits her parents with not only supporting her but actively encouraging her to learn to become more self-determined and to learn to advocate for herself. She acknowledges her parents’ efforts to foster self-management of her spina bifida in all aspects of her special health care needs from doing her own self-care to making her own decisions regarding her medical care. Her parents started early, apparently recognizing that learning to become independent involves a life span approach. In most schools, formalized transition begins between 14 and 16 years of age. Waiting until then to address transition issues can hinder development of these maturity milestones. This same philosophic approach guided the development efforts of the Web-based resource. The following is Jamie’s story.
When I consider transitioning into adult health care in regard to managing spina bifida, it’s hard to pinpoint just when that happened. I think it’s because, really, there were multiple steps to that transition.
I was blessed to have parents who knew I would be most successful if I was taught to be independent. I wasn’t treated as their “disabled child,” I was simply taught to manage my disability. What I mean is, I was treated like my able-bodied brother was with regard to expectations of responsibility, and so forth.
Another blessing was that my parents included me in on decisions about my medical care from an early age. This included treatment, but mostly on choosing doctors. I remember meeting a new neurosurgeon and I didn’t like how he treated me (he spoke to my parents—not me, etc) so we never went back. I also was allowed to stop seeing my (wonderful) male pediatrician when I was 9 years old because I had started to develop “lady issues” that I felt a woman doctor should hear. So, I started seeing a “grown-up doctor” for my “grown-up issues.” Through these experiences, I was being trained to gauge what kind of doctors I liked and thought were good for me.
I was also taught to make my own doctors’ appointments from the time I was a young teenager. This is a vital skill that I don’t understand waiting until adulthood to learn. Being able to know what doctors to call and when, as well as being able to articulate the reason for the visit is really not as hard as some people with spina bifida make it out to be, in all honesty. It’s a simple phone call that is no more difficult or complicated than ordering a pizza.
All of these skills were incredibly important (and put to the test) when I left home to attend college 2 states away. I was dealing with doctors in a small town that didn’t always fully understand the issues related to being an adult with spina bifida. I learned even better self-advocacy skills that I continue to practice more than a decade later.
What I continue to find challenging is knowing what issues I need to be aware of now that I’m an adult with spina bifida. I have the health care guide for adults, but there’s been several times that I’ve been told that some of the tests mentioned in that book are not necessary. As there is only a growing amount of knowledge of adults with spina bifida, I never know if I should trust information from the Spina Bifida Association, or from doctors who are sitting right in front of me. This is where my decision skills come into play. I’m learning to gauge when I should fight for certain things or trust the doctor’s judgment. It’s a fine line that seems to continue moving.
One thing about this journey into adulthood is that it’s not over yet. And that’s not just because I have spina bifida. As I get older, there will be more and better treatments, but there will also be more issues. I believe I’ve been equipped with the latent skills to handle those as they arise.
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